How do you know if you are really having a heart attack?
Hoe do you know if you are really having a heart attack with my family history?
I have so many memories of me taking my sister Cathy to the ER with horrible chest pain, and back pain. She was hooked up to all the appropriate monitors, EKG's were done, blood work completed, and a few hours later, we were told nothing was wrong, and she could be taken home. No explanation given for all her pain. A week later, the routine would be repeated. Cathy was in her last 20's. This didn't surprise any of us, since my Mother's first heart attack came when she was 34, and the second one, the one that killed her, came when she was 35. From what we have been told, her EKG's were all normal, as well as her blood work, until the day that she died.
But, back to Cathy's problem. None of the Doctors believed that she was having heart problems because they were only looking at the test results, and not at what was happening to her. We didn't have anything in writing about my Mother to prove that there might be something strange about our medical make up. (obviously a mother dying at age 35 from a heart attack in the 70's, wasn't found odd enough)
Finally, Cathy found a cardiologist that agreed to do a stress test, but sad to say that came back normal, but because he had two sisters that told him the same convincing stories about our Mother, he agreed to do a heart cath. They were very shocked. She had had a heart attack, and maybe 2, there was a lot of damage done. She needed a quadruple bypass done, but they wouldn't do it because they had never dealt with a heart with such tiny arteries before, so they got her to Chicago where she spent over a week in recovery. A few years later, it became again, and she needed stents, but at that time, they were too big, she still smoked, and they wouldn't put her on the heart transplant list, so at age 38, my sister passed away from a massive heart attack right in front of me.
Fast forward to about a month ago. My chest pains that I normally have, started getting worse, but only when I took in a deep breath. Charles took me to the ER, where they did all the appropriate testing. Everything looked fine, they thought it was lung related, and my Doctor put me of prednisone for a week. (which did ease the pain in my hips greatly) About 2 weeks later, the pain became consistent, it was in my chest and in between my shoulder blades and was difficult to breath. I was exhausted, and had that "I just don't feel good at all" feeling. This went on for a couple days, until I asked Charles to take me to the ER. While standing in the ER waiting to be admitted, the lightheadness started, and I was so tired, I didn't want to speak, I just wanted the pain to stop and go to sleep. This time, they were more serious. Blood work, EKG...said all that showed was a previous heart attack which I didn't know, and still don't know anything about, Chest x rays, CT scan of my chest...the works. They wanted to keep me, saying that I needed a heart cath in the morning. I agreed, as long as they would do one in the morning!!! (feel for this again)
A few hours later, I called the nurse telling her that my left arm was killing me, going into my left shoulder, up my neck and was making me clench my teeth, like when you have a tooth ache or a sinus infection. Now, I have had a frozen left shoulder and been on oxycodon, and this pain was getting comparable. She keeps telling me that my potassium was really low, so they were giving it to me through my IV, and that was causing my arm to hurt, but she would call the Dr to see if they could stop it. (not ever sure if this happened or not)
I was having a lot of pain from the center of my chest, through my back over to my entire left arm and shoulder area, up my jaw and mouth. Morphine and nitro wasn't really helping much.
Next thing I remember is, this Doctor coming in telling me that I was having to move to another area because I was having a heart attack. I told her I figured I was because it was really hurting, and the morphine wasn't helping much. More morphine, and now some Nitro paste, bedrest w/ bathroom use. It hurt like this for a couple hours from when I started to complain until it eased up that I could say I was getting some relief. I was exhausted. They kept telling me I was going to have a heart cath. By this time we had 2 Doctors telling us I had had a heart attack, numerous cardiac nurses explaining this blood test that ONLY goes up when you have a heart attack. "NO other reason at all will cause it".
The cardiologist came in, and the first thing out of his mouth was, "why are you still going to Prairie Heart for you Cardiac Care, why aren't you picking a doctor here, your other doctor's are here"? He wasn't nice about it at all. I told him I loved my doctor there, and before I could finish, he tells me that I did not have a heart attack, that the blood work cannot go sky high like that, and then fall back to normal, it just doesn't happen. So what happened then?? He didn't know, a lab error maybe, but he did know it wasn't a heart attack. I asked him how a lab error could have done this. Again, he didn't know, he had never seen it, but it wasn't a heart attack. When we told him that 2 other cardiac doctors told us it was, the nurses saying "this test ONLY goes up if you are having a heart attack, NO other reason would cause this".. he told me he didn't care what they said. So, now I wasn't getting a heart cath until Monday. 2 days away!
My last Ejection Fraction rate in 2007, done by this doctor was 58-60%, which tells how efficient your heart is pumping blood. This one, done by another doctor because I refused to let him do it, is down to 52%. Why? Doesn't seem like a big drop, but under 50% is considered left ventricle dysfunction. Was there a heart attack that caused this drop?
I could drive myself crazy wondering what happened. Am I like the rest of my female relatives and respond differently to the EKG's and blood work? Who knows.
They did keep me on bedrest for the rest of the week. (why) They did an endoscopy and gallbladder ultrasound to see if that could have been causing the pain. They both were normal. (still on bedrest) A day or two after this "episode" I was off the morphine because the back pain was gone, though they left me on the nitro paste.
I am signing releases for my Cardiologist to get all the Progress notes, lab tests, discharge notes, CD of the heart cath to see what it actually showed. I have yet to have spoken to anyone in the cardiology Dept after the heart cath to hear their explaination, to answer any questions that I might have. They became like ghosts that just ordered tests, and never gave me the results. The nurses would look them up for me. (but they couldn't answer my questions)
It was a very stressful stay to say the least. If there is a next time, I will take the time to drive to my Cardiologist where I can get the care that I have become use to having.
The first 3-4 days after coming home, I was so exhausted. I couldn't stop myself from falling asleep. Actually, it's been over a week now, and I am just now getting around a littl better. I am still tired most of the time, but I am not falling asleep every time I sit down for more than 10 mins. I have had a couple sharp chest pains, but nothing compares to the pain that I had in the hospital that night...no matter what it was.
You know those little surveys you get in the mail after you have been in the hospital? Hmmmm, I wonder what I will say??? Please, I know exactly what I am going to say......see above.
We will see what my Doctor has to say after he reviews all the information. I'll keep you updated.
Friday, October 8, 2010
Monday, October 4, 2010
Casper, the NOT so friendly dog
It's been awhile since I've written. A lot has happened, but I guess I should start from the beginning. Casper, our new addition to the family. Our 14 mo. old White German Shepherd.
We brought Casper home, not knowing what to expect since he is a rescue dog, and we did get some conflicting stories about his past. The first thing we learned was he does not walk on a leash, at all.
The second, he gets car sick!
Once we got him home, Charles walked him through the house, showing him which rooms he was allowed in, and which ones he was not. (yes, we got this from the Dog Whisper) Then we let him have free roam of the house, he explored everything, and I do mean everything. Shepherds being taller than boxers, and with the added nose, he could get into things that Katie never could, so it was compared to putting things up when your friends come over that have babies. Finding that "no touch" zone.
Then came the dogie door. It was soon obvious that Casper had never seen one before. Charles went outside into the 20 ft. dog run and would call Casper outside as I would try to push him through the door AND hold the dogie door open. Another thing we learned - - Casper does NOT like the area around his tail to be touched!! He finally would go out, only if you held the door open for him, but would not come back in. He didn't want to push his nose on the door. Leaving him outside for awhile, thinking he would get the idea sooner or later resulted in a quiet, strange high pitched whine. Yep, I caved. I thought some more practice was in order, and maybe some treats. It worked, after a few hours. But, we learned he is housebroken. YES, a plus!!!
Food was next. We were told to get him on a feeding schedule of some type to put some weight on him. He is 14 mos. old and only weighs 47 pounds. He needs to gain 30 pounds. Ok, forget the schedule, just feed him, right?
More abuse is showing up as we look him over, and he looks us over. One of his ears is ripped, by the previous owners dogs we were told. Both tips are cut up, by what, we don't know, but it almost looks like fly bites, yet the owner said he was always kept inside. We didn't realize at the rescue how his ribs stuck out so much, you can lay each of your fingers inside each one of them. His backbone is sticking up and out of his fur, along with both of his hip bones. You can't really brush him because of the pain it causes when you touch all the bones. It's so sad really to see him curled up in a ball, and you realize that it's all his bones that are sticking out. My mind just can't grasp the idea that people actually do this to animals and children...I know that they do, I see it right in front of me, but I can't comprehend it I guess. That they are real people? Why do they do it? What do they get out of it? Do they NOT understand this is painful??? I am not sure what I am searching for here..
I guess he has decided he likes us and wants to stay. After a few days and my son came over. He sat on the couch doing the right thing by letting Casper come to him, sniff and check him all out. Everything seemed just fine until my son moved, then we both heard a very low growl. Neither of us moved for a moment, making sure we heard the same thing, my son sat back and everything seemed fine. Casper then leaned against him begging for a belly rub. Odd?? So, he rubbed him, talked to him, and everything seemed fine again. I was sitting on the couch just opposite of them, so Casper was on the floor between us, wondering if that wasn't the problem, but as long as he kept giving him attention, it seemed fine. Finally Casper went to sleep at our feet, but, my son bent down to scratch his own leg, Casper snapped at him. We were so surprised!!! We don't know what happened to cause such a reaction.
The next episode was with Charles' friend. He came over and was at the dog run door asking Casper to come out. From what I heard was, he did the "oh, aren't you so cute" thing, and shaking his head, petting him on top of his head. Seems Casper took this fine, but only for a minute or two, then when Doug stood up to walked away, Casper tried to take a chunk out of his butt. Thank God it was only a scratch, but still the same, he tried.
I guess we can make all kinds of excused for Casper, he was being defensive sitting between me and my son, he felt cornered, yada yada yada...
The facts are the facts..he is growling and has snapped at 2 people in less than a month. I am not sure if it matters why, but what are we going to do about it.
At the rescue, we were told he was great with children, and the previous owner told me that she had 2 teenagers and all their friends were over all the time playing with him. Hmmmm, not sure I believe that story either.
Other than that, he is doing fairly well. He sits, stays, lays down, shakes..all the normal commands. We bought a leash that goes around his nose to stop the pulling, and it works like a dream. (the whispers tricks did not work at all) I can even walk him every day. I spent a good part of the day putting the leash on his nose and taking it back off, giving him a treat..repeat...and trust me, this was not something I would like to do again. Casper might be an abused underweight Shepherd, but let me tell you, he can out muscle me any time, any day of the week. But, it worked. Now if you get his leash down, he starts that very strange whine he has, rubs up against you, flips over a few times - - still up against you, with that high whine, then finally will sit and let you put that leash over his nose, and walks to the door. Ahhh, success! He is getting walked about 3 times a day, and sometimes he also plays outside in the fenced in yard. Sad to say, but I am not wanting him to play too much, he needs his calories right now.
Playing is another sad topic. I don't think Casper has ever had toys before, because he doesn't seem to know how to play. We have purchased numerous toys, and for the longest time, he wouldn't do anything with them. Finally, after much prodding, he began to put them in his mouth and I would squeeze them until they would squeak. He would drop them! This went on for days until he started to figure out he could make that sound himself. He did find one of Katie's old stuff toys and ripped that to pieces. He was very proud of himself, bringing every little piece to show me. Yes, he loves to chew! He still will not play tug of war. He will drop everything you touch in his mouth and act like he has done something bad, but we are working on it. He loves to chase a Frisbee, then rip it into as many pieces as he possibly can when he gets it. I think once he gets over that ripping stage (ha ha) he might be good at Frisbee. He runs good, jumps for it, and brings it just within your reach, then starts destroying it, all while wagging that huge tail in joy.
It had to be decided early on who was the "alpha" in the house, and Charles was going to win this battle. It was hard to watch since Casper was abused so much and you really wanted to see him get some of his pride back, but that wasn't going to happen here. He is a very strong willed dog, and every day it is a test. Charles wins, and Casper loves him for it more and more. He has learned the sounds of the Truck and the Harley when Charles comes home. I make him sit and stay until Charles comes through the door, and it almost takes an act of God to get him to do it. He wiggles with his high pitched whine out of excitement, but he is learning. He is figuring out that if he jumps on Charles, a knee in the chest isn't as much fun as a treat or even a belly rub, but some days all that pent up excitement just takes over and he forgets.
One morning after Charles left for work, Casper must have thought he had the house all to himself. First I heard him running through the house, in and out of the dogie door, back through the house again, then I hear him running down the hall, full speed, and before I could scream "STOP", in one bounce he was on my bed, flipped over with all 4 legs in the air, his head up against my head just like he was expected to be there. But, with one snap of the fingers, he jumped right up and out of that bed and bolted back through the house and ended up at the front window, panting, waiting for Charles to come home. I guess he was just as surprised as I as was finding me in that bed, as I was seeing him make one leap from floor to his back next to me.
Casper and me, well our relationship is different that Charles and his. When Charles corrects him, he comes running to me and rolls over on his back and whines. If he is hungry, it's me he comes running to. When he vomits, he's hurt, scared, etc...it's time for me. Otherwise he is Charles' dog, pure and simple. He follows him everywhere he goes, and if he can't go with him, he waits at the door for him to come back. If he is gone too long, he comes to me with that quiet whine, stares at me with those big amber eyes and when I tell him Daddy will be home soon, he curls up on my feet, and I know he has found a safe place to call home.
We brought Casper home, not knowing what to expect since he is a rescue dog, and we did get some conflicting stories about his past. The first thing we learned was he does not walk on a leash, at all.
The second, he gets car sick!
Once we got him home, Charles walked him through the house, showing him which rooms he was allowed in, and which ones he was not. (yes, we got this from the Dog Whisper) Then we let him have free roam of the house, he explored everything, and I do mean everything. Shepherds being taller than boxers, and with the added nose, he could get into things that Katie never could, so it was compared to putting things up when your friends come over that have babies. Finding that "no touch" zone.
Then came the dogie door. It was soon obvious that Casper had never seen one before. Charles went outside into the 20 ft. dog run and would call Casper outside as I would try to push him through the door AND hold the dogie door open. Another thing we learned - - Casper does NOT like the area around his tail to be touched!! He finally would go out, only if you held the door open for him, but would not come back in. He didn't want to push his nose on the door. Leaving him outside for awhile, thinking he would get the idea sooner or later resulted in a quiet, strange high pitched whine. Yep, I caved. I thought some more practice was in order, and maybe some treats. It worked, after a few hours. But, we learned he is housebroken. YES, a plus!!!
Food was next. We were told to get him on a feeding schedule of some type to put some weight on him. He is 14 mos. old and only weighs 47 pounds. He needs to gain 30 pounds. Ok, forget the schedule, just feed him, right?
More abuse is showing up as we look him over, and he looks us over. One of his ears is ripped, by the previous owners dogs we were told. Both tips are cut up, by what, we don't know, but it almost looks like fly bites, yet the owner said he was always kept inside. We didn't realize at the rescue how his ribs stuck out so much, you can lay each of your fingers inside each one of them. His backbone is sticking up and out of his fur, along with both of his hip bones. You can't really brush him because of the pain it causes when you touch all the bones. It's so sad really to see him curled up in a ball, and you realize that it's all his bones that are sticking out. My mind just can't grasp the idea that people actually do this to animals and children...I know that they do, I see it right in front of me, but I can't comprehend it I guess. That they are real people? Why do they do it? What do they get out of it? Do they NOT understand this is painful??? I am not sure what I am searching for here..
I guess he has decided he likes us and wants to stay. After a few days and my son came over. He sat on the couch doing the right thing by letting Casper come to him, sniff and check him all out. Everything seemed just fine until my son moved, then we both heard a very low growl. Neither of us moved for a moment, making sure we heard the same thing, my son sat back and everything seemed fine. Casper then leaned against him begging for a belly rub. Odd?? So, he rubbed him, talked to him, and everything seemed fine again. I was sitting on the couch just opposite of them, so Casper was on the floor between us, wondering if that wasn't the problem, but as long as he kept giving him attention, it seemed fine. Finally Casper went to sleep at our feet, but, my son bent down to scratch his own leg, Casper snapped at him. We were so surprised!!! We don't know what happened to cause such a reaction.
The next episode was with Charles' friend. He came over and was at the dog run door asking Casper to come out. From what I heard was, he did the "oh, aren't you so cute" thing, and shaking his head, petting him on top of his head. Seems Casper took this fine, but only for a minute or two, then when Doug stood up to walked away, Casper tried to take a chunk out of his butt. Thank God it was only a scratch, but still the same, he tried.
I guess we can make all kinds of excused for Casper, he was being defensive sitting between me and my son, he felt cornered, yada yada yada...
The facts are the facts..he is growling and has snapped at 2 people in less than a month. I am not sure if it matters why, but what are we going to do about it.
At the rescue, we were told he was great with children, and the previous owner told me that she had 2 teenagers and all their friends were over all the time playing with him. Hmmmm, not sure I believe that story either.
Other than that, he is doing fairly well. He sits, stays, lays down, shakes..all the normal commands. We bought a leash that goes around his nose to stop the pulling, and it works like a dream. (the whispers tricks did not work at all) I can even walk him every day. I spent a good part of the day putting the leash on his nose and taking it back off, giving him a treat..repeat...and trust me, this was not something I would like to do again. Casper might be an abused underweight Shepherd, but let me tell you, he can out muscle me any time, any day of the week. But, it worked. Now if you get his leash down, he starts that very strange whine he has, rubs up against you, flips over a few times - - still up against you, with that high whine, then finally will sit and let you put that leash over his nose, and walks to the door. Ahhh, success! He is getting walked about 3 times a day, and sometimes he also plays outside in the fenced in yard. Sad to say, but I am not wanting him to play too much, he needs his calories right now.
Playing is another sad topic. I don't think Casper has ever had toys before, because he doesn't seem to know how to play. We have purchased numerous toys, and for the longest time, he wouldn't do anything with them. Finally, after much prodding, he began to put them in his mouth and I would squeeze them until they would squeak. He would drop them! This went on for days until he started to figure out he could make that sound himself. He did find one of Katie's old stuff toys and ripped that to pieces. He was very proud of himself, bringing every little piece to show me. Yes, he loves to chew! He still will not play tug of war. He will drop everything you touch in his mouth and act like he has done something bad, but we are working on it. He loves to chase a Frisbee, then rip it into as many pieces as he possibly can when he gets it. I think once he gets over that ripping stage (ha ha) he might be good at Frisbee. He runs good, jumps for it, and brings it just within your reach, then starts destroying it, all while wagging that huge tail in joy.
It had to be decided early on who was the "alpha" in the house, and Charles was going to win this battle. It was hard to watch since Casper was abused so much and you really wanted to see him get some of his pride back, but that wasn't going to happen here. He is a very strong willed dog, and every day it is a test. Charles wins, and Casper loves him for it more and more. He has learned the sounds of the Truck and the Harley when Charles comes home. I make him sit and stay until Charles comes through the door, and it almost takes an act of God to get him to do it. He wiggles with his high pitched whine out of excitement, but he is learning. He is figuring out that if he jumps on Charles, a knee in the chest isn't as much fun as a treat or even a belly rub, but some days all that pent up excitement just takes over and he forgets.
One morning after Charles left for work, Casper must have thought he had the house all to himself. First I heard him running through the house, in and out of the dogie door, back through the house again, then I hear him running down the hall, full speed, and before I could scream "STOP", in one bounce he was on my bed, flipped over with all 4 legs in the air, his head up against my head just like he was expected to be there. But, with one snap of the fingers, he jumped right up and out of that bed and bolted back through the house and ended up at the front window, panting, waiting for Charles to come home. I guess he was just as surprised as I as was finding me in that bed, as I was seeing him make one leap from floor to his back next to me.
Casper and me, well our relationship is different that Charles and his. When Charles corrects him, he comes running to me and rolls over on his back and whines. If he is hungry, it's me he comes running to. When he vomits, he's hurt, scared, etc...it's time for me. Otherwise he is Charles' dog, pure and simple. He follows him everywhere he goes, and if he can't go with him, he waits at the door for him to come back. If he is gone too long, he comes to me with that quiet whine, stares at me with those big amber eyes and when I tell him Daddy will be home soon, he curls up on my feet, and I know he has found a safe place to call home.
Thursday, September 9, 2010
New Beginnings...Old Feelings??
Today is a new day, but what do you do when those old sad feelings are still hanging on? The ones I am talking about is my dear old friend Katie, our Boxer that we just lost. Everyone keeps telling me that the good memories will take over and the sadness will ease up. You did a good thing for her, for the right reasons, etc. I know all this. I DO have wonderful memories of Katie - - tons of them, almost 10 years of them, because she was an amazing dog and best friend. But the fact is, I still miss her, and it still hurts like crazy.
I was reading online about grieving for your pets, and I did get some comfort in the fact that homeowners that were home alone w/ their pets were more likely to have longer periods of grieving than others. Guessing that we are NOW alone all day, which is what I feel I am going through. Not only do I miss Katie, for being her, but I miss our routines together, our talks, playtime,... our everything. My life during the day was centered around her. The article also said it wasn't uncommon to "hear" the animal at specific times of the day, which makes it harder to get over...but could at a later date give some comfort. I am counting those days!! Well, so far, I fit into all those. I still hear Katies dog tags, I hear that heavy sigh at night, I hear the back door moving when she would go outside on her many trips to potty...and at times, I seem to see a flash of white out of the corner of my eye, and I almost trip moving so I don't step on her.
I am really glad that I read that article, because I was really think I was starting to go crazy!! Some people reading this would smile, nod their heads, and just agree.
The other part of the article was, when do you get another dog? Well, if you have been around me these last few weeks, you know my immedicate answer has been, "never again". My rational has been that I cannot go through this pain again. I have fears that I would hold back from loving another dog, and it wouldn't be fair, to either of us. My dilemma is, Charles wants a German Shepherd! He has wanted one since before Katie, during Katie, and even more so now. This is very hard!
My "never" has been weakening knowing that it is not fair to him either, knowing how much he has wanted one, and has been waiting for so long to have one.
So, we started "looking" for a white german shepherd puppy. Figuring that it was going to take some time to find the right one, get the money for one, etc.
I was looking on the internet and to be honest, there really aren't many around this area. I didn't want to tell anyone, for the main reason, that there might be one available right now, and I wasn't ready to get one. But, we finally did tell a couple people, and they didn't know of any either. (Ahhh, see, we aren't meant to have one right now!!) I kept looking at this as signs that my grief and depression weren't over, and we needed more time - - even though I was willing to look and accept one, when ready. Make sense?
A few days ago, Charles and I were out for a ride, and come back from Bloomington through the country, for no reason other than just getting some sun and stress relief. About half way home, we pass a Vet Practice, and I spotted a huge German Shepherd, but not white. Charles yells back to me.."Did you see that sign?"..as I yell up to him..."Did you see that Shepherd?"..we turn around. As we are turning around we exchange what we had seen. He has seen a sign that advertised puppies and kittens. I am not sure if I was scared, or excited...but off we went!
We pulled into the drive, and not only was it a Vet's Office, but it was also a No-Kill Shelter with about 100 dogs. Right off the bat, I spot the large German Shepherd pacing and pacing the kennel. We went in to talk to the keeper.
He informs us about the shepherd, which is young, but no people skills at all. They had a few mixed shepherds, but they were all around 5-8 yrs old. No puppies, but...and here comes the but...these are his words..."I do have this one young german shepherd, but he is white". The look on Charles face said it all!! Off we went!
At the back of the kennel was this young, 1 yr old white german shepherd, male, very scared pup. Yellow/brown eyes that wouldn't look at you, pacing back and forth just the end piece of the cage. 2 other huge dogs were fighting to get our attention. The kennel person asked if we wanted to see him. "yes". He basically had to drag him out, but once away from the other dogs, he started to perk up. Leash trained, he is not! But, he does know how to sit, stay, shake and lay down. His name is Casper, and he is very thin. The previous owner had a large uncut male who didn't like him, and they fought, which I believe took all the food, and a couple pieces of his ear as well. We put him back and went to talk about adoption.
After discussing adoption, we walked back and Casper was excited to see us. I sat down on the ground, he sat down against the cage and pushed against me, wagging his tail. Charles informed me that if we agreed to take him, they could have him ready the very next day. I don't know what happened to the "never no dogs" in me, but feeling Casper against me, and seeing him staring into my eyes..I said tell me we will be here tomorrow for him! It was like Casper knew what was happening. He got all excited, even with the other dogs pushing on him, he got up, wagging his tail, kissing through the kennel, and pushing back against me.
When we walked off, Casper stood up on his back legs, watching us, and started to whine. Not sure if that is a good sign, but it sure makes you feel good, doesn't it? ha ha.
We found out that we can't take him home until today, 9/9/10. We also found out that his birthday is July 4, 2009. A fourth of July puppy!! If he only knew what a political family he was coming to!! ha ha
So, in a few hours, a new chapter will begin, with our new dog Casper!
I have some fears, and I am excited.
We keep saying that finding that kennel, out in the middle of nowhere, with a white german shepherd that no one else seemed to have...was just meant to be.
I got the name of the previous owner and have a wonderful talk with her about Casper, what his likes, dislikes, good habits and bad habits are. She told me we could call anytime we wanted. She lives close and has 2 teenagers who cried for days after having to give him up...I understood. I told her I would send pictures of him growing up, if she wanted. I feel like we have make a great start for him.
Stay tuned, more will be revealed!!
I was reading online about grieving for your pets, and I did get some comfort in the fact that homeowners that were home alone w/ their pets were more likely to have longer periods of grieving than others. Guessing that we are NOW alone all day, which is what I feel I am going through. Not only do I miss Katie, for being her, but I miss our routines together, our talks, playtime,... our everything. My life during the day was centered around her. The article also said it wasn't uncommon to "hear" the animal at specific times of the day, which makes it harder to get over...but could at a later date give some comfort. I am counting those days!! Well, so far, I fit into all those. I still hear Katies dog tags, I hear that heavy sigh at night, I hear the back door moving when she would go outside on her many trips to potty...and at times, I seem to see a flash of white out of the corner of my eye, and I almost trip moving so I don't step on her.
I am really glad that I read that article, because I was really think I was starting to go crazy!! Some people reading this would smile, nod their heads, and just agree.
The other part of the article was, when do you get another dog? Well, if you have been around me these last few weeks, you know my immedicate answer has been, "never again". My rational has been that I cannot go through this pain again. I have fears that I would hold back from loving another dog, and it wouldn't be fair, to either of us. My dilemma is, Charles wants a German Shepherd! He has wanted one since before Katie, during Katie, and even more so now. This is very hard!
My "never" has been weakening knowing that it is not fair to him either, knowing how much he has wanted one, and has been waiting for so long to have one.
So, we started "looking" for a white german shepherd puppy. Figuring that it was going to take some time to find the right one, get the money for one, etc.
I was looking on the internet and to be honest, there really aren't many around this area. I didn't want to tell anyone, for the main reason, that there might be one available right now, and I wasn't ready to get one. But, we finally did tell a couple people, and they didn't know of any either. (Ahhh, see, we aren't meant to have one right now!!) I kept looking at this as signs that my grief and depression weren't over, and we needed more time - - even though I was willing to look and accept one, when ready. Make sense?
A few days ago, Charles and I were out for a ride, and come back from Bloomington through the country, for no reason other than just getting some sun and stress relief. About half way home, we pass a Vet Practice, and I spotted a huge German Shepherd, but not white. Charles yells back to me.."Did you see that sign?"..as I yell up to him..."Did you see that Shepherd?"..we turn around. As we are turning around we exchange what we had seen. He has seen a sign that advertised puppies and kittens. I am not sure if I was scared, or excited...but off we went!
We pulled into the drive, and not only was it a Vet's Office, but it was also a No-Kill Shelter with about 100 dogs. Right off the bat, I spot the large German Shepherd pacing and pacing the kennel. We went in to talk to the keeper.
He informs us about the shepherd, which is young, but no people skills at all. They had a few mixed shepherds, but they were all around 5-8 yrs old. No puppies, but...and here comes the but...these are his words..."I do have this one young german shepherd, but he is white". The look on Charles face said it all!! Off we went!
At the back of the kennel was this young, 1 yr old white german shepherd, male, very scared pup. Yellow/brown eyes that wouldn't look at you, pacing back and forth just the end piece of the cage. 2 other huge dogs were fighting to get our attention. The kennel person asked if we wanted to see him. "yes". He basically had to drag him out, but once away from the other dogs, he started to perk up. Leash trained, he is not! But, he does know how to sit, stay, shake and lay down. His name is Casper, and he is very thin. The previous owner had a large uncut male who didn't like him, and they fought, which I believe took all the food, and a couple pieces of his ear as well. We put him back and went to talk about adoption.
After discussing adoption, we walked back and Casper was excited to see us. I sat down on the ground, he sat down against the cage and pushed against me, wagging his tail. Charles informed me that if we agreed to take him, they could have him ready the very next day. I don't know what happened to the "never no dogs" in me, but feeling Casper against me, and seeing him staring into my eyes..I said tell me we will be here tomorrow for him! It was like Casper knew what was happening. He got all excited, even with the other dogs pushing on him, he got up, wagging his tail, kissing through the kennel, and pushing back against me.
When we walked off, Casper stood up on his back legs, watching us, and started to whine. Not sure if that is a good sign, but it sure makes you feel good, doesn't it? ha ha.
We found out that we can't take him home until today, 9/9/10. We also found out that his birthday is July 4, 2009. A fourth of July puppy!! If he only knew what a political family he was coming to!! ha ha
So, in a few hours, a new chapter will begin, with our new dog Casper!
I have some fears, and I am excited.
We keep saying that finding that kennel, out in the middle of nowhere, with a white german shepherd that no one else seemed to have...was just meant to be.
I got the name of the previous owner and have a wonderful talk with her about Casper, what his likes, dislikes, good habits and bad habits are. She told me we could call anytime we wanted. She lives close and has 2 teenagers who cried for days after having to give him up...I understood. I told her I would send pictures of him growing up, if she wanted. I feel like we have make a great start for him.
Stay tuned, more will be revealed!!
Sunday, September 5, 2010
Our Beloved Katie
This has been put off long enough....
Katie, our lovely boxer had to be put to sleep. Her knee was blown out the way athlete's do. I think theirs is called ACL, but with a dog it is called CCL. After going to the Vet and having her physical and shot, her leg was in extreme pain. She spent the night pacing and panting. I gave her pain pills and benedryl, and it would not come close to touching the pain. I stayed up with her, trying to calm her, thinking, no praying, it was just the anxiety of the day at the Vets. Katie was never out of the house unless it was to get a shot, so going somewhere in the car was very stressful on her.
The next day wasn't much different. She was walking on it like nothing was wrong, but when you went to touch it, she would turn around and give you "the look". We knew what was coming, and tried to give each other the talk about how we would be doing it for the right reasons, for Katie not to be in pain any longer. Which is true, but here is the story:
We got Katie when she was around 6 weeks old, and she was the unwanted white boxer puppy of the litter. I didn't want a puppy, but Charles and my son Jeffrey talked me into it because she was going to die. Breeders do not want a white boxer, and they don't want anyone to know they had a white boxer when people come to inspect their litter mates. So, Katie was kept in the garage by herself, while her litter mates were in the house, nice and warm with mom and dad. Did I tell you she was born in January when it was freezing cold?? So after counting each one of the ribs on her, and watching her shake her way over to me, just wanting to be held, how could I say no? But, the deal was we would keep her until we could find a good home for her. And we did. US! She was so weak that I carried her wrapped up in a blanket like a baby, rocked her in a chair while I was on the computer until she was asleep, and carried her over the grass to do her duty because her paws were raw from the cold concrete. She had sores on her hips bones where her bones actually poked through.
Then I got sick, and was in bed for the next few weeks to come. Katie would learn to love the water bed. I took her out every morning then grabbed her toys and back to my bed we went for the day. This is where she grew up. She became the calmest, quietest, most loving boxer anyone could ever ask for. She never barked. She always knew when I was sick, or in pain. Every night when I would sneak out of bed to get into a hot bathtub, Katie would get up and sit outside the door waiting on me, never leaving until I was back in bed, safe and sound. If I was in there too long, she would come lean her head over the tub and let me know she was really tired and wanted to go back to bed herself, but she wouldn't. She had a bed in her crate, a bed in the living room, and a bed next to my side of the bed..but if I was sick on the couch, her bed was right next to me on the floor by the couch, until she felt I was better. Even up to the end, she stayed by my side, pain and all.
Katie was the easiest dog to train. She knew all the tricks, sit, shake, roll over..you know the main ones. But she also learned to sneeze. One day I was eating grapes, and yes, I know you aren't supposed to feed dogs grapes, and this was before I knew that. Charles said she was a begging dog, but I said we shared food...she while we were sharing some grapes, I started to give her a bite, but I started to sneeze, a few times in a row. Katie stared at me, and slowly started to nod her head, trying to figure out what I was asking of her. Once I noticed, I gave her a bite...pretended to sneeze, she would do it alittle harder , and then harder..until she sneezed!! From that point on, you would tell her to sneeze, and she would.
She also figured out "cheese time". Some how, 6 p.m. because snack time around here. Poor Katie didn't have a snack, so I gave her a piece of cheese. It didn't take long for her to demand that she get something at 6 p.m. She would stand in front of the TV and stare at you. Now, I mean she would literally stare you down until you moved your head, and then she would move hers to match yours. (anything to block your view) She would continue this until someone would start laughing which then she would get excited and run into the kitchen, and stare at the refrig, or just make a lap and come right back and stare at you some more. Sometimes I would forget and she would get right in my face with those big eyes, and stare me down, and when I would ask her what she wanted, Charles would laugh and ask me what time it was, and off to the kitchen she would run.
Katie had a great life. She was very, very spoiled, and was almost 10 yrs. old which is old for a boxer, especially one with the starting in life that she had. She also had congestive heart failure and crappy hips as well. I wouldn't be surprised if she didn't have about 30 toys at one time. She knew every time we came home with a plastic bag, she could stick that pug nose in it and find something that was for her. She has 3 beds, so if one wasn't cool enough or warm enough for her, one of the others would be. We always has a fan running for her since the congestive heart made her panic some, so it would always be the place she would go to when she felt she couldn't breathe. Treats, I can't even count the treats that she would get, and she knew which cupboard had which treat in it, so depending on which mood she was in dictated which cupboard she ran to and stared at until you showed up. Pillows and blankets...she had them too. So many beside my bed that getting up in the middle of the night was a trick trying to toe tap on everything to figure out which was a blanket, pillow or Katie, so I could stand up and get to the bathroom....and as always, her right behind me.
It is so quiet here at home, and I do just about anything not to be here. I miss her terribly. I am still finding her little white hair in places, which brings on the tears, and the memories. Charles and I were with her until the end. She was quiet and out of pain, and it was much harder on us than it was on her. I swear I hear her at night, her little tags clanking together, or her heavy sigh at night by my side of the bed when she is trying to get comfortable. I never thought I could love a dog like I love her...but she wasn't a dog, she was our best friend
Katie, our lovely boxer had to be put to sleep. Her knee was blown out the way athlete's do. I think theirs is called ACL, but with a dog it is called CCL. After going to the Vet and having her physical and shot, her leg was in extreme pain. She spent the night pacing and panting. I gave her pain pills and benedryl, and it would not come close to touching the pain. I stayed up with her, trying to calm her, thinking, no praying, it was just the anxiety of the day at the Vets. Katie was never out of the house unless it was to get a shot, so going somewhere in the car was very stressful on her.
The next day wasn't much different. She was walking on it like nothing was wrong, but when you went to touch it, she would turn around and give you "the look". We knew what was coming, and tried to give each other the talk about how we would be doing it for the right reasons, for Katie not to be in pain any longer. Which is true, but here is the story:
We got Katie when she was around 6 weeks old, and she was the unwanted white boxer puppy of the litter. I didn't want a puppy, but Charles and my son Jeffrey talked me into it because she was going to die. Breeders do not want a white boxer, and they don't want anyone to know they had a white boxer when people come to inspect their litter mates. So, Katie was kept in the garage by herself, while her litter mates were in the house, nice and warm with mom and dad. Did I tell you she was born in January when it was freezing cold?? So after counting each one of the ribs on her, and watching her shake her way over to me, just wanting to be held, how could I say no? But, the deal was we would keep her until we could find a good home for her. And we did. US! She was so weak that I carried her wrapped up in a blanket like a baby, rocked her in a chair while I was on the computer until she was asleep, and carried her over the grass to do her duty because her paws were raw from the cold concrete. She had sores on her hips bones where her bones actually poked through.
Then I got sick, and was in bed for the next few weeks to come. Katie would learn to love the water bed. I took her out every morning then grabbed her toys and back to my bed we went for the day. This is where she grew up. She became the calmest, quietest, most loving boxer anyone could ever ask for. She never barked. She always knew when I was sick, or in pain. Every night when I would sneak out of bed to get into a hot bathtub, Katie would get up and sit outside the door waiting on me, never leaving until I was back in bed, safe and sound. If I was in there too long, she would come lean her head over the tub and let me know she was really tired and wanted to go back to bed herself, but she wouldn't. She had a bed in her crate, a bed in the living room, and a bed next to my side of the bed..but if I was sick on the couch, her bed was right next to me on the floor by the couch, until she felt I was better. Even up to the end, she stayed by my side, pain and all.
Katie was the easiest dog to train. She knew all the tricks, sit, shake, roll over..you know the main ones. But she also learned to sneeze. One day I was eating grapes, and yes, I know you aren't supposed to feed dogs grapes, and this was before I knew that. Charles said she was a begging dog, but I said we shared food...she while we were sharing some grapes, I started to give her a bite, but I started to sneeze, a few times in a row. Katie stared at me, and slowly started to nod her head, trying to figure out what I was asking of her. Once I noticed, I gave her a bite...pretended to sneeze, she would do it alittle harder , and then harder..until she sneezed!! From that point on, you would tell her to sneeze, and she would.
She also figured out "cheese time". Some how, 6 p.m. because snack time around here. Poor Katie didn't have a snack, so I gave her a piece of cheese. It didn't take long for her to demand that she get something at 6 p.m. She would stand in front of the TV and stare at you. Now, I mean she would literally stare you down until you moved your head, and then she would move hers to match yours. (anything to block your view) She would continue this until someone would start laughing which then she would get excited and run into the kitchen, and stare at the refrig, or just make a lap and come right back and stare at you some more. Sometimes I would forget and she would get right in my face with those big eyes, and stare me down, and when I would ask her what she wanted, Charles would laugh and ask me what time it was, and off to the kitchen she would run.
Katie had a great life. She was very, very spoiled, and was almost 10 yrs. old which is old for a boxer, especially one with the starting in life that she had. She also had congestive heart failure and crappy hips as well. I wouldn't be surprised if she didn't have about 30 toys at one time. She knew every time we came home with a plastic bag, she could stick that pug nose in it and find something that was for her. She has 3 beds, so if one wasn't cool enough or warm enough for her, one of the others would be. We always has a fan running for her since the congestive heart made her panic some, so it would always be the place she would go to when she felt she couldn't breathe. Treats, I can't even count the treats that she would get, and she knew which cupboard had which treat in it, so depending on which mood she was in dictated which cupboard she ran to and stared at until you showed up. Pillows and blankets...she had them too. So many beside my bed that getting up in the middle of the night was a trick trying to toe tap on everything to figure out which was a blanket, pillow or Katie, so I could stand up and get to the bathroom....and as always, her right behind me.
It is so quiet here at home, and I do just about anything not to be here. I miss her terribly. I am still finding her little white hair in places, which brings on the tears, and the memories. Charles and I were with her until the end. She was quiet and out of pain, and it was much harder on us than it was on her. I swear I hear her at night, her little tags clanking together, or her heavy sigh at night by my side of the bed when she is trying to get comfortable. I never thought I could love a dog like I love her...but she wasn't a dog, she was our best friend
Monday, August 9, 2010
I Think I See A Pattern Here
Today was the day I was going to give it my all. I went to see the Orthopedic Doctor, with my list in hand, nicely typed out. I was prepared. Hmmmm, what happened then?? I ended up with another round of physical therapy. No diagnosis. Compete different view than the pain clinic, which I guess is why you get a second opinion, so then what, you get a third and then flip a quarter to see who wins?
I was ushered into my room by a .... well, I don't know who or what he was, but he was quick as lightening, and he lost me in the hallway, as well, we know I have to walk rather slowly, and this guy was obviously practicing for his 10K.
Enter number 2 person. Very nice women. Could understand her fairly well. She was asking the appropriate questions, but it was taking her f o r e v e r!!! Besides, she had no idea why I was really there, so I jumped in, and went through the numerous appointments over the last few months to catch her up to speed. She got it!!! She even examined me, at which point, I was hoping that she was in the correct room, and was supposed to be doing this, but what the hey...she was understanding what I was getting at, and knew exactly where I was hurting before I could point to it!! She could stay.
Enter my new Doc. Very pleasant fellow. Looked right at you when he talked to you. Ran the story down to him as well. Sat back in his nice over-sized leather chair, shaking his head the entire time. Got on his computer to check my chart, x-rays, and labs. Did the appropriate exam, which I was SO very grateful for that he was gentle and didn't push me around until I cried, unlike some docs I have had recently. Then came the talk!
He feels that the injections that the pain clinic had been doing is just going to damage the bone that have fused.
He feels that once the bone fuses, there usually isn't too much pain, so the pain could be coming from somewhere else, and not just the hip joints, but something called "Piriformis Muscle Syndrome". Basically, this is a tight muscle, on the side of your hip that will trapped a nerve and cause pain.
I have my first physical therapy evaluation appointment in the morning.
He feels that we will start with the easiest to find and fix, and work our way down the list. Of course, he didn't give me the list.
I did ask him, as I have asked all my Doctors - - "HOW" and / or "WHY" did my SI joints fuse? At first, I think he thought I had them fused for pain control. Then with some further searching in my records, he seen that they fused over a period of time on their own, and as a result, my right leg is now 1" plus shorter than the other. Because my pelvis is not straight and it fused that way, that could be another reason for the continuation of pain. When they purposely fuse SI joints, they center the pelvis, making sure it is completely straight, then bolt it, so that it no longer moves when you do. Not the case with me. (of course not)
He also told me that he believes this is genetic and that if my Mother was alive, she probably had it, and if we checked my Father, he probably has it as well....but, he didn't have a name for this. RIGHT!
Looking on the internet, the genetic testing, the scaroiliitis turning into fused SI joints, fatigue, painful joints, and did I say FATIGUE??? ...are all the symptoms of Ankylosing Spondylitis. The same diagnosis the very first pain Doctor gave me.
Why someone won't say the words now, I haven't a clue, but I am going to find a new Rheumatologist and see about treatment.
One thing that the Orthopedic did not address was the stomach pain. The first person that came into the room did, and documented it on her sheets of paper, but he did not. I am not sure if tunnel vision took over, and once he thought he knew what was wrong, he forgot the rest??? Sadly, once he started talking about physical therapy, I forgot the rest! I was so determined not to agree to physical therapy, but he was very convincing, which is his job I guess.
When I went to physical therapy before, I was in so much pain afterwards, and even worse then next day. I am not able to take advil, aleve, or anything like that to reduce the swelling that is caused by the physical therapy, because I am in stage 3 kidney failure. Once I stopped going, I felt better, and my shoulder got better, quicker even. So, I have made myself a deal that if I am in greater pain afterward, like before, I will stop and ask for an earlier appointment with him. (Please, let me keep this deal...please let me keep this deal..)
Until then, I will make a list of my questions that were not addressed at this meeting, so I will be ready for the next one. I will hand them to him at the beginning of the appointment, and I will have my own copy where I can write my answers on. Maybe I will "appear" like I am intimidating, and get some answers?? Maybe.
I was ushered into my room by a .... well, I don't know who or what he was, but he was quick as lightening, and he lost me in the hallway, as well, we know I have to walk rather slowly, and this guy was obviously practicing for his 10K.
Enter number 2 person. Very nice women. Could understand her fairly well. She was asking the appropriate questions, but it was taking her f o r e v e r!!! Besides, she had no idea why I was really there, so I jumped in, and went through the numerous appointments over the last few months to catch her up to speed. She got it!!! She even examined me, at which point, I was hoping that she was in the correct room, and was supposed to be doing this, but what the hey...she was understanding what I was getting at, and knew exactly where I was hurting before I could point to it!! She could stay.
Enter my new Doc. Very pleasant fellow. Looked right at you when he talked to you. Ran the story down to him as well. Sat back in his nice over-sized leather chair, shaking his head the entire time. Got on his computer to check my chart, x-rays, and labs. Did the appropriate exam, which I was SO very grateful for that he was gentle and didn't push me around until I cried, unlike some docs I have had recently. Then came the talk!
He feels that the injections that the pain clinic had been doing is just going to damage the bone that have fused.
He feels that once the bone fuses, there usually isn't too much pain, so the pain could be coming from somewhere else, and not just the hip joints, but something called "Piriformis Muscle Syndrome". Basically, this is a tight muscle, on the side of your hip that will trapped a nerve and cause pain.
I have my first physical therapy evaluation appointment in the morning.
He feels that we will start with the easiest to find and fix, and work our way down the list. Of course, he didn't give me the list.
I did ask him, as I have asked all my Doctors - - "HOW" and / or "WHY" did my SI joints fuse? At first, I think he thought I had them fused for pain control. Then with some further searching in my records, he seen that they fused over a period of time on their own, and as a result, my right leg is now 1" plus shorter than the other. Because my pelvis is not straight and it fused that way, that could be another reason for the continuation of pain. When they purposely fuse SI joints, they center the pelvis, making sure it is completely straight, then bolt it, so that it no longer moves when you do. Not the case with me. (of course not)
He also told me that he believes this is genetic and that if my Mother was alive, she probably had it, and if we checked my Father, he probably has it as well....but, he didn't have a name for this. RIGHT!
Looking on the internet, the genetic testing, the scaroiliitis turning into fused SI joints, fatigue, painful joints, and did I say FATIGUE??? ...are all the symptoms of Ankylosing Spondylitis. The same diagnosis the very first pain Doctor gave me.
Why someone won't say the words now, I haven't a clue, but I am going to find a new Rheumatologist and see about treatment.
One thing that the Orthopedic did not address was the stomach pain. The first person that came into the room did, and documented it on her sheets of paper, but he did not. I am not sure if tunnel vision took over, and once he thought he knew what was wrong, he forgot the rest??? Sadly, once he started talking about physical therapy, I forgot the rest! I was so determined not to agree to physical therapy, but he was very convincing, which is his job I guess.
When I went to physical therapy before, I was in so much pain afterwards, and even worse then next day. I am not able to take advil, aleve, or anything like that to reduce the swelling that is caused by the physical therapy, because I am in stage 3 kidney failure. Once I stopped going, I felt better, and my shoulder got better, quicker even. So, I have made myself a deal that if I am in greater pain afterward, like before, I will stop and ask for an earlier appointment with him. (Please, let me keep this deal...please let me keep this deal..)
Until then, I will make a list of my questions that were not addressed at this meeting, so I will be ready for the next one. I will hand them to him at the beginning of the appointment, and I will have my own copy where I can write my answers on. Maybe I will "appear" like I am intimidating, and get some answers?? Maybe.
Wednesday, July 28, 2010
Is it because I am poor?
I have decided that my frustration is with myself, for putting up with the Doctors insensitivity and complete lack of compassion, and my lack of willpower (ie: balls) to stand up to them, and for myself.
I went to my Doctor to discuss my leaving the trial for Gastroparesis, and getting off the medication, Domperidone. Right off the bat, he wasn't pleased. The nurse, on the other hand, tried to interrupt his train of thought, and inform him that the other Doctors had instructed me to come to him to inform him that I had been vomiting for over a month, and had been having severe abdominal pain for the same amount of time. Well, much to my surprise, he sat back into his chair, and informed me that he was ONLY seeing me because I was in his Gastroparesis study! The nurse must have seen the "deer in the headlights look" because she stumbled all over herself to get into the conversation, letting him know, again, that I was being referred to him, by other Doctors, (as that would make if official) to see what was wrong with me. I added, that the previous Doctors thought that because my SI joints had fused, that some times some diseases such as Crohn's, etc, went along with it.
With a HUGE sigh, he sat up and looked at the computer...my chart...and said my blood work was fine, and since I had a colonoscopy and endoscopy 4 YEARS ago, he couldn't see anything wrong. Does nothing change in 4 years??? Has he read my chart?? Was an exam too much to ask ? He then preceeded to tell me what to eat for the Gastroparesis, and asked me what medication I had tried before, (reglan) and then told me to take it again. HELLO...are you not listening to me?? Obviously not! (giving up)
I have been to four Doctors. Each one telling me that they don't know what is wrong with my stomach, but they are sending me to someone that will....one gave me an appointment with an Orthopedic, a bone specialist!
The clinic that I go to, has now combined with their hospital, and some of the Doctors have made the decision to leave. Three of my Doctors have left, going to other places where they are allowed to continue to accept all their perks, as this clinic has now become a non-for profit group.
I have to think this has become a money issue...and I don't have any! This clinic has been known for not accepting poor people, but I was lucky and got in~ ~ or was I? It has taken me 6 weeks to be passed between four Doctors, and I haven't a clue what is going on with the pain in my stomach, and I have even less of a clue what to do about it, or where to go.
I am going to the Orthopedic appointment, because I was referred there. I am looking forward to the look on his face when I ask him what his opinion is with the pain in my stomach, as that is the reason for my referral!! Priceless! Though, I am going to take advantage of his specialty, and see what he might be able to do for my SI joints, and hip joints. (new x rays show moderate amounts of arthritis and bone spurs in both hip joints) I attend a pain clinic that does injections for those, but would love to get a second opinion if I could sneak one in...
I don't want to make this political, I want everyone to have medical insurance, but if this is what is to come for "us poor people", I am really worried about the care we are going to get ... or not get. I can't imagine how many people like me...poor...are going to be passed on to Doctor after Doctor, not getting the treatment they deserve, while the Doctors are trying to see as many patients, as quickly as they can, to make up for the insurance reimbursements they have lost out on. Who is going to suffer? We are...I feel like I already am, and I am frustrated as hell.
I went to my Doctor to discuss my leaving the trial for Gastroparesis, and getting off the medication, Domperidone. Right off the bat, he wasn't pleased. The nurse, on the other hand, tried to interrupt his train of thought, and inform him that the other Doctors had instructed me to come to him to inform him that I had been vomiting for over a month, and had been having severe abdominal pain for the same amount of time. Well, much to my surprise, he sat back into his chair, and informed me that he was ONLY seeing me because I was in his Gastroparesis study! The nurse must have seen the "deer in the headlights look" because she stumbled all over herself to get into the conversation, letting him know, again, that I was being referred to him, by other Doctors, (as that would make if official) to see what was wrong with me. I added, that the previous Doctors thought that because my SI joints had fused, that some times some diseases such as Crohn's, etc, went along with it.
With a HUGE sigh, he sat up and looked at the computer...my chart...and said my blood work was fine, and since I had a colonoscopy and endoscopy 4 YEARS ago, he couldn't see anything wrong. Does nothing change in 4 years??? Has he read my chart?? Was an exam too much to ask ? He then preceeded to tell me what to eat for the Gastroparesis, and asked me what medication I had tried before, (reglan) and then told me to take it again. HELLO...are you not listening to me?? Obviously not! (giving up)
I have been to four Doctors. Each one telling me that they don't know what is wrong with my stomach, but they are sending me to someone that will....one gave me an appointment with an Orthopedic, a bone specialist!
The clinic that I go to, has now combined with their hospital, and some of the Doctors have made the decision to leave. Three of my Doctors have left, going to other places where they are allowed to continue to accept all their perks, as this clinic has now become a non-for profit group.
I have to think this has become a money issue...and I don't have any! This clinic has been known for not accepting poor people, but I was lucky and got in~ ~ or was I? It has taken me 6 weeks to be passed between four Doctors, and I haven't a clue what is going on with the pain in my stomach, and I have even less of a clue what to do about it, or where to go.
I am going to the Orthopedic appointment, because I was referred there. I am looking forward to the look on his face when I ask him what his opinion is with the pain in my stomach, as that is the reason for my referral!! Priceless! Though, I am going to take advantage of his specialty, and see what he might be able to do for my SI joints, and hip joints. (new x rays show moderate amounts of arthritis and bone spurs in both hip joints) I attend a pain clinic that does injections for those, but would love to get a second opinion if I could sneak one in...
I don't want to make this political, I want everyone to have medical insurance, but if this is what is to come for "us poor people", I am really worried about the care we are going to get ... or not get. I can't imagine how many people like me...poor...are going to be passed on to Doctor after Doctor, not getting the treatment they deserve, while the Doctors are trying to see as many patients, as quickly as they can, to make up for the insurance reimbursements they have lost out on. Who is going to suffer? We are...I feel like I already am, and I am frustrated as hell.
Thursday, July 15, 2010
So Frustrated...but at who?
I went to my doctors appointments, and was passed on down the line from one referral, to the next.
I had started at the Nurse Practitioner, who did some tests to rule out that my appendix was acting up, or that I had kidney stones. Both were negative. She then agreed with the CT Scan that I had had 3 years ago, it was probably adhesions, and referred me to a surgeon, but we couldn't get in for 2 weeks. This means a month with new pain, unknown pain.
OK, we can do this...end in sight.
We get to the new surgeon, and the appointment was quick. I took Charles in with me...my witness on not only how I get treated, but maybe some intimidation for them to do their job. (yeah, right..next time, bring a big stick with us)
She runs through what the previous visit was like, and lets us know right away that she disagrees with her opinion, and feels that it is a pulled muscle. After 5 weeks?? She wants to do an ultrasound, which I have never seen done for a pulled muscle. Charles jumps in and explains to her some of my history of negative stress tests, but then a quadruple bypass, medication to calm you down, and I am wired for days..etc. So, she them says that maybe a CT Scan would be better, but then she wants me to get an evaluation at Physical Therapy. I refuse telling her I have already completed it, but she asked if I would just get the evaluation part..and then I can make up my mind from there. None of this is making sense to me, but I agree, mainly out of totally frustration of being passed on again. She does tell me that the only way of finding adhesions is to open me up and looking, and with "my medical history", they don't want to do that unless they absolutely have to. (ahhhhh, she already read my chart)
So we left, the nurse made all the appointments for us. I had the CT Scan, which of course came back normal, and I cancelled my evaluation with the Physical therapist. By this time, the pain has reached from my back, around to my right hip bone, across my stomach to my left hip bone and down my right thigh.
Nobody is listening.
I have my appointment with the pain clinic. I tell her how frustrated I am for being passed around. She tells me this is now the norm. Doctors are all specialist, and once you reach the end of what they do, they pass you to the next one. But no one is talking to eachother!!! She said they are, through your chart!! ARE YOU KIDDING ME??? She didn't know anything about the pain getting worse, and moving to my lower stomach area..so either she wasn't reading it, or someone didn't document it well. She did tell me I could get a second opinion, which I will since my Rheumatologist was fired!! See, there is something positive about all of this!!!
She decided to do pelvic x rays to see if "it" has spread to my hip joints, or something has happened to my SI joints to make this worse. She did use the word, "Sacroiliitis", and that I needed more injections into my SI joints.
I had my pelvic and SI joint area x rays completed. There were 2 white lines across each side of my hips. Long story about the tech trying to take care of me. Hope nothing is broken. Find out tomorrow, I hope. Then I have to decided if I want more injections....need to make a lot of decisions actually.
More waiting....More being passed on....I still don't know anything. Am I frustrated at them for not doing their job, or am I frustrated at myself for not making them do their job?
I do not want to become one of those screaming idiots you see in the waiting rooms..you know the ones, the ones that get things done, but no one likes them, and they talk about them at their dinner tables at night. Why..Why do I have to become one of those people in order to get things done...the first time?
So frustrated!
I had started at the Nurse Practitioner, who did some tests to rule out that my appendix was acting up, or that I had kidney stones. Both were negative. She then agreed with the CT Scan that I had had 3 years ago, it was probably adhesions, and referred me to a surgeon, but we couldn't get in for 2 weeks. This means a month with new pain, unknown pain.
OK, we can do this...end in sight.
We get to the new surgeon, and the appointment was quick. I took Charles in with me...my witness on not only how I get treated, but maybe some intimidation for them to do their job. (yeah, right..next time, bring a big stick with us)
She runs through what the previous visit was like, and lets us know right away that she disagrees with her opinion, and feels that it is a pulled muscle. After 5 weeks?? She wants to do an ultrasound, which I have never seen done for a pulled muscle. Charles jumps in and explains to her some of my history of negative stress tests, but then a quadruple bypass, medication to calm you down, and I am wired for days..etc. So, she them says that maybe a CT Scan would be better, but then she wants me to get an evaluation at Physical Therapy. I refuse telling her I have already completed it, but she asked if I would just get the evaluation part..and then I can make up my mind from there. None of this is making sense to me, but I agree, mainly out of totally frustration of being passed on again. She does tell me that the only way of finding adhesions is to open me up and looking, and with "my medical history", they don't want to do that unless they absolutely have to. (ahhhhh, she already read my chart)
So we left, the nurse made all the appointments for us. I had the CT Scan, which of course came back normal, and I cancelled my evaluation with the Physical therapist. By this time, the pain has reached from my back, around to my right hip bone, across my stomach to my left hip bone and down my right thigh.
Nobody is listening.
I have my appointment with the pain clinic. I tell her how frustrated I am for being passed around. She tells me this is now the norm. Doctors are all specialist, and once you reach the end of what they do, they pass you to the next one. But no one is talking to eachother!!! She said they are, through your chart!! ARE YOU KIDDING ME??? She didn't know anything about the pain getting worse, and moving to my lower stomach area..so either she wasn't reading it, or someone didn't document it well. She did tell me I could get a second opinion, which I will since my Rheumatologist was fired!! See, there is something positive about all of this!!!
She decided to do pelvic x rays to see if "it" has spread to my hip joints, or something has happened to my SI joints to make this worse. She did use the word, "Sacroiliitis", and that I needed more injections into my SI joints.
I had my pelvic and SI joint area x rays completed. There were 2 white lines across each side of my hips. Long story about the tech trying to take care of me. Hope nothing is broken. Find out tomorrow, I hope. Then I have to decided if I want more injections....need to make a lot of decisions actually.
More waiting....More being passed on....I still don't know anything. Am I frustrated at them for not doing their job, or am I frustrated at myself for not making them do their job?
I do not want to become one of those screaming idiots you see in the waiting rooms..you know the ones, the ones that get things done, but no one likes them, and they talk about them at their dinner tables at night. Why..Why do I have to become one of those people in order to get things done...the first time?
So frustrated!
Monday, July 12, 2010
Friday, July 9, 2010
Change of Name
Just wanted to ad a note about the different name. The "LaughandCry" came from Charles thinking about what people usually say when life gets to them.."well, we could laugh OR cry..." Well, we usually said not for us, we were laughing AND crying because our situation would change so often, it brought tears or fear, anger, joy, sadness...you name it, and it also brought laughter. Sometimes just out of pure surrender. You reach the point of just giving it over to your "God" of your understanding..and in order to keep some sort of sanity, you have to let it go. Well, along with that came laughter. So, long story short...LaughANDcry.
It's been a long, not so good week for me, and I was playing around with this blog..well, honestly staring at it blankly..and I thought maybe I should ad, "living a life with Chronic Pain", because that is also what it is about, basically. Our life, what it is like to have to deal with it, live with it, life that has changed because of it...sometimes on a dime.
It might make it more depressing at times, but, we do have a sense of humor about it, and for some reason, I can't seem to show it. There is also a horrible dark side, another side that I haven't been able to show. But maybe now that I have "named" it, for what it is...it will become, what it is.
It's been a long, not so good week for me, and I was playing around with this blog..well, honestly staring at it blankly..and I thought maybe I should ad, "living a life with Chronic Pain", because that is also what it is about, basically. Our life, what it is like to have to deal with it, live with it, life that has changed because of it...sometimes on a dime.
It might make it more depressing at times, but, we do have a sense of humor about it, and for some reason, I can't seem to show it. There is also a horrible dark side, another side that I haven't been able to show. But maybe now that I have "named" it, for what it is...it will become, what it is.
Thursday, June 17, 2010
Awesome Doctors...So Far
Yesterday, I get a phone call from the Nurse Practitioner that I seen over a week ago. She called to tell me that she was sorry for her nurses not giving me the results of my blood work in a timely manner. She also wanted to know if I understood all of my blood work results, and if I was comfortable with the Surgeon that she had choosen for me. Can you believe this? An apology?? She also offered pain medication since I still had a few days before I seen the surgeon, and she knew it would be a few more days before I could have the actual surgery. She is awesome!!
Tomorrow, I will see this surgeon and we will decide what we will do about all this pain, and if she thinks, as the Nurse Practitioner does, that I have adhesions, and that they need to be removed. Usually, the Doctors will wait for my cardiologist approval to get off the plavix, and then I stop it for 7-10 days before any procedure. Well, I stopped it last Saturday, because I have to have this done, because I cannot live with this pain much longer. I am not waiting for the permission from my cardiologist, because I know he will give it, if they deem this surgery is going to make me painfree. So, I am praying that the surgery date is going to be within a week or so.
From what I understand, this surgery is just a few holes in the belly, find all the scar tissue, cut it out, put some tape on the holes, and go home. As long as my heart doesn't give them any fits, I will be good to go. I don't feel there should be any problems, only less pain, and I am so looking forward to it. :)
I will write tomorrow and let everyone know what her decision is going to be, and hopefully when my surgery is going to be.
Until then....
Tomorrow, I will see this surgeon and we will decide what we will do about all this pain, and if she thinks, as the Nurse Practitioner does, that I have adhesions, and that they need to be removed. Usually, the Doctors will wait for my cardiologist approval to get off the plavix, and then I stop it for 7-10 days before any procedure. Well, I stopped it last Saturday, because I have to have this done, because I cannot live with this pain much longer. I am not waiting for the permission from my cardiologist, because I know he will give it, if they deem this surgery is going to make me painfree. So, I am praying that the surgery date is going to be within a week or so.
From what I understand, this surgery is just a few holes in the belly, find all the scar tissue, cut it out, put some tape on the holes, and go home. As long as my heart doesn't give them any fits, I will be good to go. I don't feel there should be any problems, only less pain, and I am so looking forward to it. :)
I will write tomorrow and let everyone know what her decision is going to be, and hopefully when my surgery is going to be.
Until then....
Sunday, June 6, 2010
Want to See God Smile....Make Plans!
Well, this is what Charles keeps telling me. I think this is more to cheer me up than to explain why nothing "seems" to be going right, and I am willing to take all the blame for it.
In the last 30 days, we have made plans to go camping, twice, and has it happened, even once? Nope. And both times, it has been because of my health. First time, old problems creaping back into our lives. Second time, a new problem surprising us, and at a most inconvenient time.
The first time, we were going to go camping, just about an hour from home. We went shopping, got food, packed our clothes, everything was ready. We drove out to the campsite and I thought this one paticular site was going to be fantastic. It was on a dead end spot. There were 2 right next to eachother. Huge beautiful trees covering the area, so it would be nice and cool, day and night, and the river was running right next to them. Sounds great doesn't it? I thought so. Then the rain came, but that was ok, because it was going to stop before the weekend, but what I hadn't counted on was all that humidity.
Now, as you might remember, a few weeks ago, I started on a new medication to keep my heart rate down and it was to keep me from fainting, and basically feeling horrible. Well, this new little pill is doing it's job as far as keeping my heart rate slow. I have never had a heart rate so low before, but sad to say, all those feelings are still there as if my heart rate is still 180. I can't breath, I am light headed, almost fainting, shaking, and the most horrible fatigue, I am lucky to walk to the car without someone holding onto my hand. Now put all this with the humidity, and camping doesn't seem like much fun after all. Maybe with an oxygen tank, or two. Ha ha.
Since there were going to be quit a few people camping there that weekend, we decided that we wouldn't stay there at night, but ride down there every day, visit, and then come home. If I could handle that okay the first day, we would go the next day...the next..well, you get the picture.
The first night, I had an awesome time. We rode there with another couple, and I got to see a lot of people that I had not seen in years. Lot of hugging, kissing and I miss you's. It was great! There was the biggest campfire that I had ever seen. We stayed for a little over an hour, and decided to ride into town to eat. 3 other couples rode back with us, and one couple split off so it was the 6 of us that went to eat and talk, and talk and talk. It was wonderful. We hadn't just sat and talked to other people for...well, what seems like forever. But, I have to admit, I was so exhausted already.
I love riding in the dark. It feels so cool, the roads aren't so crowded, and it seems like Charles and I are the only ones out there for miles. I can lay my head on his back, close my eyes, and just relax and not have to think or worry about anything. All these medical problems, for awhile, just do not exsist.....did I say for awhile?
We went back to the campground another evening, and again we had a wonderful time. But by that night, I couldn't go on. Once I got into bed, I was there for 2 days. Not sleeping, just couldn't get the energy to get up and move around. I hurt all over, my hips were screaming at me, reminding me that they are fused together and why in the world would I put them through all this?? (unmedicated even!!)
And the best part, in one week, we were going camping for 7 days!!! *whew* This was a vacation for us to RELAX!!!! Remember that...RELAX!! But, after a couple days of rest, I was slowly back up and walking again...on to the next adventure.
Monday night, I sneezed. Shouldn't be a big deal, nothing to blog about, tell your friends about, or get on the phone begging for a doctor to see you ASAP about, right?? Wrong! I even got on facebook asking all my female friends who the best OB/GYN is in our area, not just the one you would go to, but the one that you would refer your best friend forever to!! (because we take far better care of our BFF's that we do ourselves) Got a Doc's name, and was on the phone in a heartbeat....my faster heartbeat, not a normal heartbeat, this was serious. ha ha What happened was, when I sneezed, I felt like I was stabbed in my right side, over and over again, turning that knife and twisting it, just to make sure it was in there!! OMG!!! I couldn't move, I couldn't breath..all I could do was hold my breath and pray it would go away soon. It did, but just not soon enough.
About 3 years ago, I had something like this happen, only farther up my right side. Charles took me to the ER, because we thought it was my gallbladder. It wasn't, they said. They couldn't see anything on the CT Scan, and because I had had so many abdominal surgeries, it was probably something called "adhesions". They don't like to remove them because even the removal will cause more of them...and sent me home. (after loading me up on Morphine)
I got into the Nurse Practitioner on Friday afternoon. She had a few ideas. 1. Kidney stone. 2. Appendix 3. Adensions. Plan would be check urine for blood, for kidney stones, check blood for white cells, if elevated for appendix. If both were negative, she would "hook me up with a good surgeon" to get rid of the adhesions because she feared they were attached to my bladder and intestines, and when I sneezed, (that is what I am feeling), and she was afraid it could rip my bladder or intestine.
SO, I was to call back for the "stat" order results, and the next plan at 4 p.m.
I called at 4 p.m., all was negative, I asked who the surgeon was going to be, and who was going to make the appointment, them or me? The very slow reply was.... "what are you talking about" Seems, as my luck would have it, she left for the day...oh wait, it gets better..and took some vacation days, until Monday the 14th...and didn't leave any instructions for me!!! Now, how does this lead up to the camping trip???
Our next camping trip was to start tomorrow, and end on the 14th. (are ya smiling God??)
This was supposed to be our vacation for this year because, well, because we really can't afford to go to florida this year, or Maine..get the idea? We were going to relax in lawn chairs, have a beautiful campfire, there is a really lovely beach there, take some walks. It's a beautiful place. Take some rides on the bike. Just have some fun doing whatever we wanted to do. BUT...we decided that it would be best that we stick closer to home, closer to the hospital that at least knows what 42 pills I take each day, than to risk falling and ripping something, or having that one big sneeze not knowing where we are. I have to remind myself, I am on blood thinners, and if I do rip something inside, it will bleed rather quickly.
Do you ever start to think that with the snap of your fingers, you can ruin the entire summer? I try hard to tell myself, that I really have no control over this. I don't plan it. I am sorry it happens. WHY it always happens in the summer and fall is beyond me. Why it can't happen when it's freezing outside and nobody wants to get their tired old butt up and outside anyway.
I really am grateful for everything, and everyone that I have in my life, but, it's just so frustrating to be in pain all the time, "feel" you are dependent on people, when you worked so hard to get your independence, you had so many things you wanted to do before you died, and you know in your heart that these things will never happen, now you have forgotten what they were. And then, you start to wonder why you are even here.
Then, last night, our dear friend Brenda calls us up, needing some help moving something. When we got to her house, she called me inside, so excited to show me her NEW house that SHE had just purchased. She was so proud, and I was so proud for her. She has worked SO hard to get her life back in order, and she also now has custody of her daughter. What an accomplishment! Just seeing that pride in her face was pricless. You know that feeling where your heart just swells up in your chest just watching it all?..and it sure knocked me off my pitty pot!! Thank you Brenda!!
See, I've been throwing myself one huge pitty pot. Believe me, I can have a nice one too, with every fixin available, and not invite one single fucking person. Somehow I have to see that I didn't ask to be sick. I take my medications to keep myself going. I do the things the Doctors tell me to do. I have out lived my life expectancy by years, so it is working. I probably do more damage by pushing myself sometimes because I don't want to hurt peoples feelings, or ruin others good times by being the big wuss of the group.
Acceptance. Ouch! I think I'll save that for another day...but I won't wait too long. These pitty parties are getting too expensive.
In the last 30 days, we have made plans to go camping, twice, and has it happened, even once? Nope. And both times, it has been because of my health. First time, old problems creaping back into our lives. Second time, a new problem surprising us, and at a most inconvenient time.
The first time, we were going to go camping, just about an hour from home. We went shopping, got food, packed our clothes, everything was ready. We drove out to the campsite and I thought this one paticular site was going to be fantastic. It was on a dead end spot. There were 2 right next to eachother. Huge beautiful trees covering the area, so it would be nice and cool, day and night, and the river was running right next to them. Sounds great doesn't it? I thought so. Then the rain came, but that was ok, because it was going to stop before the weekend, but what I hadn't counted on was all that humidity.
Now, as you might remember, a few weeks ago, I started on a new medication to keep my heart rate down and it was to keep me from fainting, and basically feeling horrible. Well, this new little pill is doing it's job as far as keeping my heart rate slow. I have never had a heart rate so low before, but sad to say, all those feelings are still there as if my heart rate is still 180. I can't breath, I am light headed, almost fainting, shaking, and the most horrible fatigue, I am lucky to walk to the car without someone holding onto my hand. Now put all this with the humidity, and camping doesn't seem like much fun after all. Maybe with an oxygen tank, or two. Ha ha.
Since there were going to be quit a few people camping there that weekend, we decided that we wouldn't stay there at night, but ride down there every day, visit, and then come home. If I could handle that okay the first day, we would go the next day...the next..well, you get the picture.
The first night, I had an awesome time. We rode there with another couple, and I got to see a lot of people that I had not seen in years. Lot of hugging, kissing and I miss you's. It was great! There was the biggest campfire that I had ever seen. We stayed for a little over an hour, and decided to ride into town to eat. 3 other couples rode back with us, and one couple split off so it was the 6 of us that went to eat and talk, and talk and talk. It was wonderful. We hadn't just sat and talked to other people for...well, what seems like forever. But, I have to admit, I was so exhausted already.
I love riding in the dark. It feels so cool, the roads aren't so crowded, and it seems like Charles and I are the only ones out there for miles. I can lay my head on his back, close my eyes, and just relax and not have to think or worry about anything. All these medical problems, for awhile, just do not exsist.....did I say for awhile?
We went back to the campground another evening, and again we had a wonderful time. But by that night, I couldn't go on. Once I got into bed, I was there for 2 days. Not sleeping, just couldn't get the energy to get up and move around. I hurt all over, my hips were screaming at me, reminding me that they are fused together and why in the world would I put them through all this?? (unmedicated even!!)
And the best part, in one week, we were going camping for 7 days!!! *whew* This was a vacation for us to RELAX!!!! Remember that...RELAX!! But, after a couple days of rest, I was slowly back up and walking again...on to the next adventure.
Monday night, I sneezed. Shouldn't be a big deal, nothing to blog about, tell your friends about, or get on the phone begging for a doctor to see you ASAP about, right?? Wrong! I even got on facebook asking all my female friends who the best OB/GYN is in our area, not just the one you would go to, but the one that you would refer your best friend forever to!! (because we take far better care of our BFF's that we do ourselves) Got a Doc's name, and was on the phone in a heartbeat....my faster heartbeat, not a normal heartbeat, this was serious. ha ha What happened was, when I sneezed, I felt like I was stabbed in my right side, over and over again, turning that knife and twisting it, just to make sure it was in there!! OMG!!! I couldn't move, I couldn't breath..all I could do was hold my breath and pray it would go away soon. It did, but just not soon enough.
About 3 years ago, I had something like this happen, only farther up my right side. Charles took me to the ER, because we thought it was my gallbladder. It wasn't, they said. They couldn't see anything on the CT Scan, and because I had had so many abdominal surgeries, it was probably something called "adhesions". They don't like to remove them because even the removal will cause more of them...and sent me home. (after loading me up on Morphine)
I got into the Nurse Practitioner on Friday afternoon. She had a few ideas. 1. Kidney stone. 2. Appendix 3. Adensions. Plan would be check urine for blood, for kidney stones, check blood for white cells, if elevated for appendix. If both were negative, she would "hook me up with a good surgeon" to get rid of the adhesions because she feared they were attached to my bladder and intestines, and when I sneezed, (that is what I am feeling), and she was afraid it could rip my bladder or intestine.
SO, I was to call back for the "stat" order results, and the next plan at 4 p.m.
I called at 4 p.m., all was negative, I asked who the surgeon was going to be, and who was going to make the appointment, them or me? The very slow reply was.... "what are you talking about" Seems, as my luck would have it, she left for the day...oh wait, it gets better..and took some vacation days, until Monday the 14th...and didn't leave any instructions for me!!! Now, how does this lead up to the camping trip???
Our next camping trip was to start tomorrow, and end on the 14th. (are ya smiling God??)
This was supposed to be our vacation for this year because, well, because we really can't afford to go to florida this year, or Maine..get the idea? We were going to relax in lawn chairs, have a beautiful campfire, there is a really lovely beach there, take some walks. It's a beautiful place. Take some rides on the bike. Just have some fun doing whatever we wanted to do. BUT...we decided that it would be best that we stick closer to home, closer to the hospital that at least knows what 42 pills I take each day, than to risk falling and ripping something, or having that one big sneeze not knowing where we are. I have to remind myself, I am on blood thinners, and if I do rip something inside, it will bleed rather quickly.
Do you ever start to think that with the snap of your fingers, you can ruin the entire summer? I try hard to tell myself, that I really have no control over this. I don't plan it. I am sorry it happens. WHY it always happens in the summer and fall is beyond me. Why it can't happen when it's freezing outside and nobody wants to get their tired old butt up and outside anyway.
I really am grateful for everything, and everyone that I have in my life, but, it's just so frustrating to be in pain all the time, "feel" you are dependent on people, when you worked so hard to get your independence, you had so many things you wanted to do before you died, and you know in your heart that these things will never happen, now you have forgotten what they were. And then, you start to wonder why you are even here.
Then, last night, our dear friend Brenda calls us up, needing some help moving something. When we got to her house, she called me inside, so excited to show me her NEW house that SHE had just purchased. She was so proud, and I was so proud for her. She has worked SO hard to get her life back in order, and she also now has custody of her daughter. What an accomplishment! Just seeing that pride in her face was pricless. You know that feeling where your heart just swells up in your chest just watching it all?..and it sure knocked me off my pitty pot!! Thank you Brenda!!
See, I've been throwing myself one huge pitty pot. Believe me, I can have a nice one too, with every fixin available, and not invite one single fucking person. Somehow I have to see that I didn't ask to be sick. I take my medications to keep myself going. I do the things the Doctors tell me to do. I have out lived my life expectancy by years, so it is working. I probably do more damage by pushing myself sometimes because I don't want to hurt peoples feelings, or ruin others good times by being the big wuss of the group.
Acceptance. Ouch! I think I'll save that for another day...but I won't wait too long. These pitty parties are getting too expensive.
Tuesday, May 11, 2010
Giving A Name To The Hidden Secret
I got a call from my Cardiologist's nurse telling me to take off my 30 day heart monitor, and mail it back to them. It had only been 14 days, to the day. I ask her what they found out. She states, "I don't know, I was just to pass on the message to take it off and mail it back". Seriously? She has worked in Cardiology now for some time, does she not yet realize just how paranoid we get over every little change in our routines? Please!
"Could you please have him call me ASAP?"
"of course"
2 hours later, he calls, and bless his heart, talks to me for every second that I need him to, explaining every little detail that I need him to..over and over and over.
He confirms that I have Diabetic Neuropathy, he also tells me that I have "sinus tachycardia", which at that point I am thinking, "no big deal", because that just means having a fast heart beat, and we already knew that..right? Then he tells me he is sorry, that I have a "special" kind....yeah, of course I do, I always have a special kind. I have a special heart, remember. One that no one has seen before. Anyway...
I have Inappropriate Sinus Ttachycardia. (IST) Which means that when I get up to go to the bathroom, my heartbeat starts out at a normal beat, such as 68-72, then jumps to 160 before I even get to the bathroom. That explains why I am out of breath, tired, and feel like I am going to faint. My blood pressure remains at 90/50. Since I didn't do anything but sit around, go to bed, and go to the bathroom, we really have no idea what my heart rate will go up to during strenuous activity. During my bathroom trips, it was 160. (I have since counted to around 200, but losing count all the time because it's so fast, or irregular?)
I also have Dysautonomia, which I believe is about the same as the Diabetic Neuropathy. Anything that is Automatic in your body, breathing, heartbeat, digestion, body temp, circulation, etc...mine is a mess. It is no longer "auto- matic" I already take pills for my food to digest, wear a zipper hoodie all year round to take on and off quickly to regulate my body temperature, expect for the freezing hands and feet, there is nothing to be done there...sorry Charles!!, My puplis. My Eye Doctor couldn't figure out why it was so painful for me to go out into the sun..SOMETIMES. He kept testing me, and couldn't find anything wrong. Well...it seems that dilation of your pupils is another automatic thing, and sometimes one or both of mine will do it when they choose to. And when they choose not to, it's like when the Eye Doctor dilated your eyes in his office and you walk out in the sun without any sun glasses. OUCH! Breathing, there isn't anything I can do about that other than walk slowly. Being careful about doing activities after I eat. My heart rate is going to be regulated by changing my medication, again.
To give you an idea of the amount of medication I'll be taking just for my heart rate, my father just had his second open heart and he takes 10 mg of atenolol, I am now taking 100 mg of it to keep my pulse down. So far, it seems to be working better than what I was on. The main side effect I have noticed is that I am even more tired that I was before. Not pleasant. Not pleasant for others to have to deal with either.
As time goes on, there are other effect that aren't so pleasant that may pop up. My medication that I take to eat may not work any longer, so they are working on a stomach pacemaker to jolt the stomach to work. The intestines may stop working, or work TOO much, and the control of them and the bladder may be gone. Just think of everything that your body does that you don't tell it to....that is what will be effected.
How do you explain to people that a 48 yr. old women is exhausted, all the time. The savella I take is helping a great deal with the pain, so there goes that excuse to be in bed. I have no excuse but I am SO tired. By 4 p.m. I can barely keep my eyes open, by 4:30 p.m. I am asleep. By 10 p.m., I am awake and watching movies, or watching Charles sleep thinking how lucky I am that I have someone that is so supportive of me, and tries so very hard to understand what is going on. Thank God he goes into the Doctor's office with me, and asks questions so he can be just as informed as I am! How did I ever get so blessed??
I am praying that I will adjust to this medication, quickly, and will feel normal. Normal, now there is a word I don't usually use. I don't even know what it is, or what to use about myself to compare it to. It's been so many years now that "something" has been going on, I wouldn't know what normal is.
When I was pregnant with my daughter, a week before her birth I noticed my legs were huge! The next few days, I couldn't put on my shoes. The next few days, couldn't put them on even without the laces. I really didn't feel good, but I think it came up on me so slowly that I was tolerating it well enough, I didn't feel the need to go to the doctor. If I had woken up, and BAM, swollen everything and sick, it would have been a different story. The day I delivered her, I was at the hospital, walking into the ER and stopped to go into the restroom and looked into the mirror, and noticed my eyes were just slits, my face was so swollen. Why I hadn't noticed this before? Don't know. Guess maybe because I had a 5 1/2 yr old and a 10 month old..who knows, but it just hit me, I was very sick and better hurry!!
When they seen me, they all knew. My blood pressure was 220/190 and I was very sick. Padded the rails, turned off the lights for seizure precautions. Lucky for me, I have never had a labor longer than 4 hours, that being this one, and all went well. Both of us survived okay. A few weeks later, I realized how good I felt...Normal!! I also then realized just how SICK I felt as well. I had something to compare it to. It has been so long now that I don't have that feeling to compare it to now. THIS has become normal to me!
I am so sad that my sister Chris didn't have a Doctor that caught on to what she was going through. I now understand all her symptoms of not being able to breath, the horrible fatigue, her racing heartbeat, and the all over body pain. All the Doctors she went to see could not find anything wrong with her. Clear chest x ray, normal blood work..nothing. They would send her home making her feel like she was just lazy and paranoid that her cancer had come back. Nope. I don't think so. She had been diabetic about 10 years longer than I have, and on insulin alot longer as well.
Don't get me wrong. I am so happy that we finally have a name to part of what I have. There isn't a name to what is wrong with my heart. But I am sad that I couldn't get Chris to my Cardiologist sooner. We had talked on Weds night making our promise to go see my Cardiologist on the following Monday. She went into cardiac arrest the next night, and passed on that Monday. Did we wait too long? Could they have been able to do anything even if we had gone that night? I don't know...nobody does. I guess that is one answer I will never have.
"Could you please have him call me ASAP?"
"of course"
2 hours later, he calls, and bless his heart, talks to me for every second that I need him to, explaining every little detail that I need him to..over and over and over.
He confirms that I have Diabetic Neuropathy, he also tells me that I have "sinus tachycardia", which at that point I am thinking, "no big deal", because that just means having a fast heart beat, and we already knew that..right? Then he tells me he is sorry, that I have a "special" kind....yeah, of course I do, I always have a special kind. I have a special heart, remember. One that no one has seen before. Anyway...
I have Inappropriate Sinus Ttachycardia. (IST) Which means that when I get up to go to the bathroom, my heartbeat starts out at a normal beat, such as 68-72, then jumps to 160 before I even get to the bathroom. That explains why I am out of breath, tired, and feel like I am going to faint. My blood pressure remains at 90/50. Since I didn't do anything but sit around, go to bed, and go to the bathroom, we really have no idea what my heart rate will go up to during strenuous activity. During my bathroom trips, it was 160. (I have since counted to around 200, but losing count all the time because it's so fast, or irregular?)
I also have Dysautonomia, which I believe is about the same as the Diabetic Neuropathy. Anything that is Automatic in your body, breathing, heartbeat, digestion, body temp, circulation, etc...mine is a mess. It is no longer "auto- matic" I already take pills for my food to digest, wear a zipper hoodie all year round to take on and off quickly to regulate my body temperature, expect for the freezing hands and feet, there is nothing to be done there...sorry Charles!!, My puplis. My Eye Doctor couldn't figure out why it was so painful for me to go out into the sun..SOMETIMES. He kept testing me, and couldn't find anything wrong. Well...it seems that dilation of your pupils is another automatic thing, and sometimes one or both of mine will do it when they choose to. And when they choose not to, it's like when the Eye Doctor dilated your eyes in his office and you walk out in the sun without any sun glasses. OUCH! Breathing, there isn't anything I can do about that other than walk slowly. Being careful about doing activities after I eat. My heart rate is going to be regulated by changing my medication, again.
To give you an idea of the amount of medication I'll be taking just for my heart rate, my father just had his second open heart and he takes 10 mg of atenolol, I am now taking 100 mg of it to keep my pulse down. So far, it seems to be working better than what I was on. The main side effect I have noticed is that I am even more tired that I was before. Not pleasant. Not pleasant for others to have to deal with either.
As time goes on, there are other effect that aren't so pleasant that may pop up. My medication that I take to eat may not work any longer, so they are working on a stomach pacemaker to jolt the stomach to work. The intestines may stop working, or work TOO much, and the control of them and the bladder may be gone. Just think of everything that your body does that you don't tell it to....that is what will be effected.
How do you explain to people that a 48 yr. old women is exhausted, all the time. The savella I take is helping a great deal with the pain, so there goes that excuse to be in bed. I have no excuse but I am SO tired. By 4 p.m. I can barely keep my eyes open, by 4:30 p.m. I am asleep. By 10 p.m., I am awake and watching movies, or watching Charles sleep thinking how lucky I am that I have someone that is so supportive of me, and tries so very hard to understand what is going on. Thank God he goes into the Doctor's office with me, and asks questions so he can be just as informed as I am! How did I ever get so blessed??
I am praying that I will adjust to this medication, quickly, and will feel normal. Normal, now there is a word I don't usually use. I don't even know what it is, or what to use about myself to compare it to. It's been so many years now that "something" has been going on, I wouldn't know what normal is.
When I was pregnant with my daughter, a week before her birth I noticed my legs were huge! The next few days, I couldn't put on my shoes. The next few days, couldn't put them on even without the laces. I really didn't feel good, but I think it came up on me so slowly that I was tolerating it well enough, I didn't feel the need to go to the doctor. If I had woken up, and BAM, swollen everything and sick, it would have been a different story. The day I delivered her, I was at the hospital, walking into the ER and stopped to go into the restroom and looked into the mirror, and noticed my eyes were just slits, my face was so swollen. Why I hadn't noticed this before? Don't know. Guess maybe because I had a 5 1/2 yr old and a 10 month old..who knows, but it just hit me, I was very sick and better hurry!!
When they seen me, they all knew. My blood pressure was 220/190 and I was very sick. Padded the rails, turned off the lights for seizure precautions. Lucky for me, I have never had a labor longer than 4 hours, that being this one, and all went well. Both of us survived okay. A few weeks later, I realized how good I felt...Normal!! I also then realized just how SICK I felt as well. I had something to compare it to. It has been so long now that I don't have that feeling to compare it to now. THIS has become normal to me!
I am so sad that my sister Chris didn't have a Doctor that caught on to what she was going through. I now understand all her symptoms of not being able to breath, the horrible fatigue, her racing heartbeat, and the all over body pain. All the Doctors she went to see could not find anything wrong with her. Clear chest x ray, normal blood work..nothing. They would send her home making her feel like she was just lazy and paranoid that her cancer had come back. Nope. I don't think so. She had been diabetic about 10 years longer than I have, and on insulin alot longer as well.
Don't get me wrong. I am so happy that we finally have a name to part of what I have. There isn't a name to what is wrong with my heart. But I am sad that I couldn't get Chris to my Cardiologist sooner. We had talked on Weds night making our promise to go see my Cardiologist on the following Monday. She went into cardiac arrest the next night, and passed on that Monday. Did we wait too long? Could they have been able to do anything even if we had gone that night? I don't know...nobody does. I guess that is one answer I will never have.
Sunday, May 9, 2010
Happy Mother's Day
Today is Mother's day, and I hope that everyone takes advantage of taking their Mothers out, or getting her a card, or just calling her and telling her that you love her....but do something.
Today is a bitter sweet day for me. I Iost my mom when I was 12 years old, and I have missed her every single day since then. The sad part is, when you are 12 and your Mom leaves your life, you start to forget her as you get older. Oh, you see pictures of her, and you remember that is your mom, but you don't remember what she sounds like, what she smells like, her facial expressions that just a Mom makes...you know, "the look"...I have forgotten that now, and it makes me so sad.
I can never tell my Mom how sorry I am for the crazy things that a normal 12 year old does, and the things that a not so normal 12 year old does.
My Mom was sick, but I didn't realize just how sick she was, not that would forgive what I was doing. I had started smoking pot when I was 10 years old. I was writing my little school notes to my friends because I thought it was so cool that I was stoned after school, or that I was staying the night with my best friend and we were staying up late, getting stoned and watching Edgar Allen Poe movies on Friday night. My best friends Mom drank Vodka, so of course I was sneaking her vodka as well. This went on for a year before my Mom and Dad found one of my "Cool" notes, and decided to search my room.
I stood next to them, screaming how unfair it was, how they were invaiding my privacy, crying, putting on a great show...and the favorite.."it's only pot"! They found a dozen or so letters telling the stories of us camping in the backyard, sleep overs, etc....all about us getting high. My parents knew nothing about drugs, and knew even less about what to do with a 11 yr. old that used them. My poor Mother, sitting on the floor, letters covering her lap, crying, asking why her baby would use drugs. Why is it THAT memory one I can remember??
I did my plea that I would never do it again. They believed me. All was good for awhile. No, I didn't stop, I was just careful about putting things in writing....it never dawned on me my father would follow me, and watch me get high through the window of my best friends house. Horrified, humiliated, I took off running. Wow, you think your parent is old. This man could run, and run fast he did. I was barefoot, and we lived in the country, and I hit a stump in the dirt and broke my toes. I kept running but he caught me. He had me put on a nightgown, and he whipped me, and whipped me, until he couldn't whip me any longer. It's not the pain I remember...it's my Mom's crying in the next room and her begging my father to stop. That is what I remember. Did I stop smoking pot, and by now, doing other drugs and drinking more? Sad to admit, Nope!
My mother died a few months later. I was sitting on the bathroom sink blowdrying my hair, and in the mirror, I watched my father, both sets of grandparents walk in. Mom was supposed to come home. See, she went to the hospital about a week or so before. They couldn't tell she'd had a heart attack because like me, and my sisters, she didn't test positive for the blood work for having a heart attack...nothing came up positive, so they were taking to the floor where they put people who needed their gallbladders out...then something showed on ther EKG, and they realized something must be wrong, so they waited. She was 35! Then she died.
I could tell by looking at their faces she was gone. No one ever told me, they all just wanted to hug me, and then they all started crying, and crying, and talking like I wasn't there, about sending me to the Sisters and letting me go to school with the church.
I went to my sisters and held on to them, not wanting to be sent away to school. I told the middle one of us, that I never got to tell Mom I was sorry for what I had done, and maybe she had a heart attack because of me and what I had been doing. She kept telling me it wasn't me. My sisters promised me that they wouldn't leave me....they both have since gone.
So, the moral of this story is. Back then, no mother ever died of a heart attack at age 35. Life is so very short, and you never know when someone you love so dearly is going to be gone. Don't let some little fight that doesn't mean a thing come between you, because you could wake up the next morning, and not be able to say you are sorry! NEVER be able to say you are sorry. This is something that you carry with all your life, and wow, talk about the hardest thing to forgive yourself for.
Happy Mother's Day!! To the new Mothers, Old Mothers, GrandMothers...ALL Mothers. Celebrate them, Love them, Most of all, forgive them, because you will miss them when they are gone! So, when you go out to eat today, look across that table and count all your blessings that you CAN still look into her eyes and tell her....I LOVE YOU!
Today is a bitter sweet day for me. I Iost my mom when I was 12 years old, and I have missed her every single day since then. The sad part is, when you are 12 and your Mom leaves your life, you start to forget her as you get older. Oh, you see pictures of her, and you remember that is your mom, but you don't remember what she sounds like, what she smells like, her facial expressions that just a Mom makes...you know, "the look"...I have forgotten that now, and it makes me so sad.
I can never tell my Mom how sorry I am for the crazy things that a normal 12 year old does, and the things that a not so normal 12 year old does.
My Mom was sick, but I didn't realize just how sick she was, not that would forgive what I was doing. I had started smoking pot when I was 10 years old. I was writing my little school notes to my friends because I thought it was so cool that I was stoned after school, or that I was staying the night with my best friend and we were staying up late, getting stoned and watching Edgar Allen Poe movies on Friday night. My best friends Mom drank Vodka, so of course I was sneaking her vodka as well. This went on for a year before my Mom and Dad found one of my "Cool" notes, and decided to search my room.
I stood next to them, screaming how unfair it was, how they were invaiding my privacy, crying, putting on a great show...and the favorite.."it's only pot"! They found a dozen or so letters telling the stories of us camping in the backyard, sleep overs, etc....all about us getting high. My parents knew nothing about drugs, and knew even less about what to do with a 11 yr. old that used them. My poor Mother, sitting on the floor, letters covering her lap, crying, asking why her baby would use drugs. Why is it THAT memory one I can remember??
I did my plea that I would never do it again. They believed me. All was good for awhile. No, I didn't stop, I was just careful about putting things in writing....it never dawned on me my father would follow me, and watch me get high through the window of my best friends house. Horrified, humiliated, I took off running. Wow, you think your parent is old. This man could run, and run fast he did. I was barefoot, and we lived in the country, and I hit a stump in the dirt and broke my toes. I kept running but he caught me. He had me put on a nightgown, and he whipped me, and whipped me, until he couldn't whip me any longer. It's not the pain I remember...it's my Mom's crying in the next room and her begging my father to stop. That is what I remember. Did I stop smoking pot, and by now, doing other drugs and drinking more? Sad to admit, Nope!
My mother died a few months later. I was sitting on the bathroom sink blowdrying my hair, and in the mirror, I watched my father, both sets of grandparents walk in. Mom was supposed to come home. See, she went to the hospital about a week or so before. They couldn't tell she'd had a heart attack because like me, and my sisters, she didn't test positive for the blood work for having a heart attack...nothing came up positive, so they were taking to the floor where they put people who needed their gallbladders out...then something showed on ther EKG, and they realized something must be wrong, so they waited. She was 35! Then she died.
I could tell by looking at their faces she was gone. No one ever told me, they all just wanted to hug me, and then they all started crying, and crying, and talking like I wasn't there, about sending me to the Sisters and letting me go to school with the church.
I went to my sisters and held on to them, not wanting to be sent away to school. I told the middle one of us, that I never got to tell Mom I was sorry for what I had done, and maybe she had a heart attack because of me and what I had been doing. She kept telling me it wasn't me. My sisters promised me that they wouldn't leave me....they both have since gone.
So, the moral of this story is. Back then, no mother ever died of a heart attack at age 35. Life is so very short, and you never know when someone you love so dearly is going to be gone. Don't let some little fight that doesn't mean a thing come between you, because you could wake up the next morning, and not be able to say you are sorry! NEVER be able to say you are sorry. This is something that you carry with all your life, and wow, talk about the hardest thing to forgive yourself for.
Happy Mother's Day!! To the new Mothers, Old Mothers, GrandMothers...ALL Mothers. Celebrate them, Love them, Most of all, forgive them, because you will miss them when they are gone! So, when you go out to eat today, look across that table and count all your blessings that you CAN still look into her eyes and tell her....I LOVE YOU!
Monday, April 26, 2010
A Complete Different Story
I guess I can stare at this blank white screen for a few more days, but nothing is going to get told unless I start typing. I am still not quite sure what to say, see now that I know people are reading this, this blog takes on a complete different identity.
I started this blog to give me some where to dump all my thoughts and feelings, just to be able to get them outside of myself and if they were able to help a stranger...got that...a STRANGER, then fantastic, but now, I have friends and family, and even more so, Charles reading it. So, as I am typing, I seem to catch myself in not wanting to upset him, or not wanting to make him worry more than he already does. Life living with me, not so easy, and it takes a lot of strength being here day after day with me, never knowing what is going to happen.
Well, after our Doctors trip last week, we have now added to that stress. I came home with a heart monitor that I have to wear for the next 30 days. This one is a bit different than the ones I have had over the years. After I have one of my "episodes", or actually while I am having one, I put a "record" button, wait for the beeps, and then call the 800 number and then "send" the recording to "them", who will keep track of all the recordings, and they will send the recordings to my cardiologist.
What my cardiologist is looking for is a "real" irregular heart beat, not like the one that I have, which is just an extra one now and then - - sometimes a few right in a row, which takes your breath away. I think the most it will do is cause you to pass out, which then you will breath again. I kind of compare it to when a child threatens to hold their breath to get their way. "go ahead" The worse they will do is bump their head when they fall down. Same here. Your body has certain mechanisms that it does automatically, such as breathing, heart beating,etc.. which brings me to what is probably the real problem with me, as least what my cardiologist is guessing it is.
Autonomic Neuropathy. (different varieties) My cardiologist seems to think this is the real culprit. This is very common in Diabetics. I keep telling myself, I have only been Diabetic for 12 years now, and I never thought mine was that out of control, but nothing about this body seems to follow the path of normalacy.
The things your body does without being told, digesting food, breathing, heart beating, puplis dialating, body temperature, are a few of the things that are not working on me any more. I have to take pills to get my stomach to digest my food now, and have looked into pace makers that are actually implanted in your stomach that tell your stomach to work when it is signaled by the food. My heart rate jumps up to 130 or higher when I am up walking, or moving around. I couldn't imagine if I ran or did some type of exercise. I already take 3 types of heart medications, which obviously don't keep my pulse down unless I am sitting down or in bed. I am out of breath and exhausted most of the time, which I am guessing is because my heart is beating so fast all the time, and it's trying to keep oxygen everywhere it needs to, and it gets tired as well. My body temperature is much lower than normal, my hands and legs are always cold, which could explain why they are always in such throbbing pain. My puplis I didn't realize was caused by this until now. I have had a lot of problems with pain in my eyes when I am outside. No one seemed to know the cause, the eye doctor just told me to where darker sun glasses, and bigger ones that wrap around so the sun doesn't get in.
The list can go on and on...and from what I understand, it will. I am caught between it's nice knowing, finally knowing what this all is, to, Oh Shit...THIS is what I have? I told my cardiologist I really haven't had that many episodes, but now that I have to call them in, I'm having about 3 per day. A lot more than I realized. It's like keeping a food journal. You don't realize how many bites of cake you really were sneaking until you got honest and wrote it all down. Now that I have to tell someone every time, I have to get honest with myself on how often these are actually occuring.
I have been in bed or on the couch since we returned from the Doctor. I am exhausted. Oh, I have done little things around the house, showered, some laundry, but after everything I do, I am out of breath and so tired, and head straight back to the couch or bed. It's been raining, so I am glad I have had an excuse not to go anywhere, and the Bike has remained in the garage.
I don't know if this is depression? Is it relief of finally, someone gets it and now I can take a break? Is it just in my head because there is relief of FINALLY someone gets it, or I am just exhausted from having so many episodes? I really don't know, and I don't know if it's important or not. What is important is, where do we go from here?
There is no cure. It is progressive. How progressive it gets, I really don't know. But, instead of writing down ALL those diagnoses, now can I just write down ONE??
I started this blog to give me some where to dump all my thoughts and feelings, just to be able to get them outside of myself and if they were able to help a stranger...got that...a STRANGER, then fantastic, but now, I have friends and family, and even more so, Charles reading it. So, as I am typing, I seem to catch myself in not wanting to upset him, or not wanting to make him worry more than he already does. Life living with me, not so easy, and it takes a lot of strength being here day after day with me, never knowing what is going to happen.
Well, after our Doctors trip last week, we have now added to that stress. I came home with a heart monitor that I have to wear for the next 30 days. This one is a bit different than the ones I have had over the years. After I have one of my "episodes", or actually while I am having one, I put a "record" button, wait for the beeps, and then call the 800 number and then "send" the recording to "them", who will keep track of all the recordings, and they will send the recordings to my cardiologist.
What my cardiologist is looking for is a "real" irregular heart beat, not like the one that I have, which is just an extra one now and then - - sometimes a few right in a row, which takes your breath away. I think the most it will do is cause you to pass out, which then you will breath again. I kind of compare it to when a child threatens to hold their breath to get their way. "go ahead" The worse they will do is bump their head when they fall down. Same here. Your body has certain mechanisms that it does automatically, such as breathing, heart beating,etc.. which brings me to what is probably the real problem with me, as least what my cardiologist is guessing it is.
Autonomic Neuropathy. (different varieties) My cardiologist seems to think this is the real culprit. This is very common in Diabetics. I keep telling myself, I have only been Diabetic for 12 years now, and I never thought mine was that out of control, but nothing about this body seems to follow the path of normalacy.
The things your body does without being told, digesting food, breathing, heart beating, puplis dialating, body temperature, are a few of the things that are not working on me any more. I have to take pills to get my stomach to digest my food now, and have looked into pace makers that are actually implanted in your stomach that tell your stomach to work when it is signaled by the food. My heart rate jumps up to 130 or higher when I am up walking, or moving around. I couldn't imagine if I ran or did some type of exercise. I already take 3 types of heart medications, which obviously don't keep my pulse down unless I am sitting down or in bed. I am out of breath and exhausted most of the time, which I am guessing is because my heart is beating so fast all the time, and it's trying to keep oxygen everywhere it needs to, and it gets tired as well. My body temperature is much lower than normal, my hands and legs are always cold, which could explain why they are always in such throbbing pain. My puplis I didn't realize was caused by this until now. I have had a lot of problems with pain in my eyes when I am outside. No one seemed to know the cause, the eye doctor just told me to where darker sun glasses, and bigger ones that wrap around so the sun doesn't get in.
The list can go on and on...and from what I understand, it will. I am caught between it's nice knowing, finally knowing what this all is, to, Oh Shit...THIS is what I have? I told my cardiologist I really haven't had that many episodes, but now that I have to call them in, I'm having about 3 per day. A lot more than I realized. It's like keeping a food journal. You don't realize how many bites of cake you really were sneaking until you got honest and wrote it all down. Now that I have to tell someone every time, I have to get honest with myself on how often these are actually occuring.
I have been in bed or on the couch since we returned from the Doctor. I am exhausted. Oh, I have done little things around the house, showered, some laundry, but after everything I do, I am out of breath and so tired, and head straight back to the couch or bed. It's been raining, so I am glad I have had an excuse not to go anywhere, and the Bike has remained in the garage.
I don't know if this is depression? Is it relief of finally, someone gets it and now I can take a break? Is it just in my head because there is relief of FINALLY someone gets it, or I am just exhausted from having so many episodes? I really don't know, and I don't know if it's important or not. What is important is, where do we go from here?
There is no cure. It is progressive. How progressive it gets, I really don't know. But, instead of writing down ALL those diagnoses, now can I just write down ONE??
Thursday, April 22, 2010
We Are On Our Way...Well Sort Of.
Today is the day. Another day at my Cardiologist. Sorry if it sounds so doom and gloom. Actually, I love the guy. We figure if it wasn't for him, and the cardiac surgeon, I wouldn't be here today. We met on funny circumstances.
I was referred to a cardiologist in a different town that offered to do a stress test, "just to see", because of my family history. It came back.."possible blockage, could redo in 6-12 months". When Charles and I met with him to get the results, he could tell we were concerned, considering my sister passed her stress test 100%, and had a heart attack a few month later at age 28. So, he decided to leave it up to us, to either follow their recommendations, or go to a different Doctor and get a heart cath. You can see what we choose.
My entire family showed up for the heart cath. We are all shown into the room, and we wait. The clinic there, all the room are in a circle, so you can watch all the people, patient and doctors go around the circle, going into each room, telling people their fate for the day. Well, in walks our Doctor, well we thought he was. He stops and stares at all of us, finally gets to me, you know the naked one under the flimsy little gown...the excuses himself telling us that he had the wrong room. We all go back to our conversation, but I heard someone say my name out in the hallway. Again, in walks the same doctor, this time, just peeking his head in and walking out. I knew he was looking for me. Just a minute later, he walked in and asked which one of us was Carla..ummmm, the flimsy gown wasn't giving this answer away?? He told us he was sorry he was 1. Late, and 2. Kept coming into our room, but after looking at the test, he expected a women about 75 -80 years old, and that surely was not me.
This new cardiologist, well, putting it nicely, didn't have one ounce of sense of humor in his entire body. None!
While I am on the gurney waiting to go into sugergy, he informs me that he studied the stress test and he feels there is absolutely nothing wrong with my heart and women with "large chests" often have this type of blockage show up on this type of stress test. YEAH...we all look at eachother, and my sister and I make some reference to each other about how these babies are great for some things...the doc, not even a smile, comment,... nothing. He finally starts to walk out. I tell him I want to remain awake so I can watch. (I know, alittle sick, but I wanted to see what it looked like) He tells me no, I say yes...you get the picture...I won. My family and I then decided to start calling him "Dr Smiley", actually so much so, that I forgot his name.
In the operating room, everything is going great, and he keeps saying, "ok", "fine", "ok"..then here comes the famous, "Oh shit"....I said, "hey, remember I am awake under here." All I got out of it, is "yes Carla, you have the same disease your mom and sister died from." and he left. The nurses held me while I cried, uncontrollably, and the rest of them cleaned me up. I tried to yell at him to not tell my family, but he couldn't hear me. Maybe he wouldn't be so blunt...maybe.
Back then, they literally put this clamp on you after a heart cath, that went under your butt, then covered your hip and squeezed the hole where the cath went in and up into your heart to inject the dye. You had to lay still for 4-6 hours, and your head had to remain flat. Not my idea of fun, but it's needed. (much easier now) While they are getting me into position and "clamped", I see my sister coming down the hall, and her face is all red, with swollen eyes, and then Charles next, tears running down his face, my parents behind them. He obviously told them, and knowing Dr. Smiley as I have come to know, he wasn't gentle.
It wasn't just HOW he told them, but what he told them. He informed Charles that I needed to get a Will, and sign a Power of Attorney, NOW, because I wasn't going to be here very long, and yes, I did have the same heart disease that killed my sister and mother. When they pressed him for a time limit, all they got was maybe to the end of the year. This was Feb. 2003. He also didn't want me to leave the hospital without having an Open Heart the next day, and that wasn't a promise that was going to extent my life, but he felt I shouldn't leave. At this hospital, everything is done by "team" effort, so he would present it, and let us know later. I wasn't doing anything for the next 6 hrs. other than laying flat with a clamp on my hip....and thinking!
We didn't realize those 6 hours would seem like an eternity with all of us there being able to entertain eachother, and we figured the news would come quickly. It didn't. And, after 6 hours, we weren't able to entertain eachother any longer either. The news of me dying was starting to settle in, and it was hitting all of us hard. My father was not wanting to bury another daughter, and my sister didn't want to bury another sister. Charles, he could barely talk. Every time we looked at eachother, we would start crying, so we just sat there holding on to eachother hands, and rubbing eachothers backs, but never letting go of one another. Little did we know at that time, it was the wrong sister that we were going to bury. Anyway, it didn't come until after they took the clamp off because they couldn't agree. The surgeon did not want to do it, and he was the only one that was voting no. I decided to go home. I needed to do my Will and give Charles my Power of Attorney before I would do the Open Heart anyway.
April 1 2003, I called and my Doctor was on vacation, but his wonderful nurse took my call, I told her I couldn't breath, couldn't walk to the bathroom without stopping and holding on. April 3, 2003, I was in the hospital having my Open Heart. The surgeon told Charles and I before the operation that he still didn't feel I would need it going by the cath. There were 3 smaller blockages. Charles left it up to me, and I told me I wanted the surgery, everything inside my chest hurt, I couldn't breath, and I "knew" something was wrong. I hated putting him through this, but I felt the alternative was worse.
When they came out of surgery, they told me I was ready to die. I had 4 huge blockages, and the smallest arteries they had ever had there. My surgeon told me later that he had only seen one other person with arteries like mine in his 25 yr career as a heart surgeon. I got excited because I though I had something in common with someone and we could tell stories to eachother. Nope, she died years ago, actually one year after her open heart. Not the odds I was wanting to hear. My heart surgeon was moving away, and hugged me telling me it was a pleasure to know me and wished me the best of luck, and he would call now and then to see how I was doing. (ahhhh, made me cry) He gave me permission, 4 weeks after my surgery to go to South Dakota on a trip with Charles for a job. Ahhhh, the life, relaxing in a hotel room after open heart. What a way to recuperate. :)
My cardiologist came back from vacation and was a new man. He actually smiled at me!!! I told him some jokes...you know the one about how God knows he isn't a cardiologist??? I thought the nurse was going to need to have CPR right then and there . But, he laughed. Later, she came back in the room and told me she didn't know what I had done to him, but he didn't act that way to other patients. I told her maybe she should tell them that joke. Now, we get along great. I adore him, and give him all the credit in the world for me being here, and tell anyone that I can what a fantastic doctor he is, even if he doesn't smile for awhile. (Oh, I remember his name now) A year or so ago, I had to call him, and he called me back and told me he was so glad to hear from me, because he was afraid to call me, he was afraid I had died!
SO, 7 years later, and I am on my way again to go visit him. I usually pack a little bag. You know that little, just in case bag. If they do an EKG and something comes up from all the chest pain I have had, or because of the 130 pulse I've been having - - but has gotten better this past week, and they decide they want me to stay, I'll be ready. Well, they have never asked me to stay, so I continue to take it as my, "insurance". Today, I haven't packed one. Am I testing fate? Or am I going by my own intuition that I know I am truly okay, so I don't need this bag? I guess I will know the answer in a few hours, because ...here we go..............
Nope...can't do it...taking my bag...just can't play with this....it's a small bag, but still a bag. :) Life is good, why test it?
I was referred to a cardiologist in a different town that offered to do a stress test, "just to see", because of my family history. It came back.."possible blockage, could redo in 6-12 months". When Charles and I met with him to get the results, he could tell we were concerned, considering my sister passed her stress test 100%, and had a heart attack a few month later at age 28. So, he decided to leave it up to us, to either follow their recommendations, or go to a different Doctor and get a heart cath. You can see what we choose.
My entire family showed up for the heart cath. We are all shown into the room, and we wait. The clinic there, all the room are in a circle, so you can watch all the people, patient and doctors go around the circle, going into each room, telling people their fate for the day. Well, in walks our Doctor, well we thought he was. He stops and stares at all of us, finally gets to me, you know the naked one under the flimsy little gown...the excuses himself telling us that he had the wrong room. We all go back to our conversation, but I heard someone say my name out in the hallway. Again, in walks the same doctor, this time, just peeking his head in and walking out. I knew he was looking for me. Just a minute later, he walked in and asked which one of us was Carla..ummmm, the flimsy gown wasn't giving this answer away?? He told us he was sorry he was 1. Late, and 2. Kept coming into our room, but after looking at the test, he expected a women about 75 -80 years old, and that surely was not me.
This new cardiologist, well, putting it nicely, didn't have one ounce of sense of humor in his entire body. None!
While I am on the gurney waiting to go into sugergy, he informs me that he studied the stress test and he feels there is absolutely nothing wrong with my heart and women with "large chests" often have this type of blockage show up on this type of stress test. YEAH...we all look at eachother, and my sister and I make some reference to each other about how these babies are great for some things...the doc, not even a smile, comment,... nothing. He finally starts to walk out. I tell him I want to remain awake so I can watch. (I know, alittle sick, but I wanted to see what it looked like) He tells me no, I say yes...you get the picture...I won. My family and I then decided to start calling him "Dr Smiley", actually so much so, that I forgot his name.
In the operating room, everything is going great, and he keeps saying, "ok", "fine", "ok"..then here comes the famous, "Oh shit"....I said, "hey, remember I am awake under here." All I got out of it, is "yes Carla, you have the same disease your mom and sister died from." and he left. The nurses held me while I cried, uncontrollably, and the rest of them cleaned me up. I tried to yell at him to not tell my family, but he couldn't hear me. Maybe he wouldn't be so blunt...maybe.
Back then, they literally put this clamp on you after a heart cath, that went under your butt, then covered your hip and squeezed the hole where the cath went in and up into your heart to inject the dye. You had to lay still for 4-6 hours, and your head had to remain flat. Not my idea of fun, but it's needed. (much easier now) While they are getting me into position and "clamped", I see my sister coming down the hall, and her face is all red, with swollen eyes, and then Charles next, tears running down his face, my parents behind them. He obviously told them, and knowing Dr. Smiley as I have come to know, he wasn't gentle.
It wasn't just HOW he told them, but what he told them. He informed Charles that I needed to get a Will, and sign a Power of Attorney, NOW, because I wasn't going to be here very long, and yes, I did have the same heart disease that killed my sister and mother. When they pressed him for a time limit, all they got was maybe to the end of the year. This was Feb. 2003. He also didn't want me to leave the hospital without having an Open Heart the next day, and that wasn't a promise that was going to extent my life, but he felt I shouldn't leave. At this hospital, everything is done by "team" effort, so he would present it, and let us know later. I wasn't doing anything for the next 6 hrs. other than laying flat with a clamp on my hip....and thinking!
We didn't realize those 6 hours would seem like an eternity with all of us there being able to entertain eachother, and we figured the news would come quickly. It didn't. And, after 6 hours, we weren't able to entertain eachother any longer either. The news of me dying was starting to settle in, and it was hitting all of us hard. My father was not wanting to bury another daughter, and my sister didn't want to bury another sister. Charles, he could barely talk. Every time we looked at eachother, we would start crying, so we just sat there holding on to eachother hands, and rubbing eachothers backs, but never letting go of one another. Little did we know at that time, it was the wrong sister that we were going to bury. Anyway, it didn't come until after they took the clamp off because they couldn't agree. The surgeon did not want to do it, and he was the only one that was voting no. I decided to go home. I needed to do my Will and give Charles my Power of Attorney before I would do the Open Heart anyway.
April 1 2003, I called and my Doctor was on vacation, but his wonderful nurse took my call, I told her I couldn't breath, couldn't walk to the bathroom without stopping and holding on. April 3, 2003, I was in the hospital having my Open Heart. The surgeon told Charles and I before the operation that he still didn't feel I would need it going by the cath. There were 3 smaller blockages. Charles left it up to me, and I told me I wanted the surgery, everything inside my chest hurt, I couldn't breath, and I "knew" something was wrong. I hated putting him through this, but I felt the alternative was worse.
When they came out of surgery, they told me I was ready to die. I had 4 huge blockages, and the smallest arteries they had ever had there. My surgeon told me later that he had only seen one other person with arteries like mine in his 25 yr career as a heart surgeon. I got excited because I though I had something in common with someone and we could tell stories to eachother. Nope, she died years ago, actually one year after her open heart. Not the odds I was wanting to hear. My heart surgeon was moving away, and hugged me telling me it was a pleasure to know me and wished me the best of luck, and he would call now and then to see how I was doing. (ahhhh, made me cry) He gave me permission, 4 weeks after my surgery to go to South Dakota on a trip with Charles for a job. Ahhhh, the life, relaxing in a hotel room after open heart. What a way to recuperate. :)
My cardiologist came back from vacation and was a new man. He actually smiled at me!!! I told him some jokes...you know the one about how God knows he isn't a cardiologist??? I thought the nurse was going to need to have CPR right then and there . But, he laughed. Later, she came back in the room and told me she didn't know what I had done to him, but he didn't act that way to other patients. I told her maybe she should tell them that joke. Now, we get along great. I adore him, and give him all the credit in the world for me being here, and tell anyone that I can what a fantastic doctor he is, even if he doesn't smile for awhile. (Oh, I remember his name now) A year or so ago, I had to call him, and he called me back and told me he was so glad to hear from me, because he was afraid to call me, he was afraid I had died!
SO, 7 years later, and I am on my way again to go visit him. I usually pack a little bag. You know that little, just in case bag. If they do an EKG and something comes up from all the chest pain I have had, or because of the 130 pulse I've been having - - but has gotten better this past week, and they decide they want me to stay, I'll be ready. Well, they have never asked me to stay, so I continue to take it as my, "insurance". Today, I haven't packed one. Am I testing fate? Or am I going by my own intuition that I know I am truly okay, so I don't need this bag? I guess I will know the answer in a few hours, because ...here we go..............
Nope...can't do it...taking my bag...just can't play with this....it's a small bag, but still a bag. :) Life is good, why test it?
Saturday, April 10, 2010
Okay, I Admit It, I Am Scared.
After going through a quadruple bypass, then having 2 stents afterwards, watching both your sisters and your Mother die, you tend to get a little paranoid when you have chest pain. I am talking about little twinges, some pressure after you eat or walk in the cold weather, to waking up in the middle of the night feeling like someone just punched you in the chest.
Since I have now out lived my family on my Mom's side, every twinge of pain I get that "is this it" nagging feeling in my head. I continue to tell myself, "NO", and walk it off, turn over and go to sleep, get on the computer...anything to take my mind off of it to see if it goes away. If not,I pop a nitro or two, and that usually does the trick. (so far)
Six weeks or so, I started on a medication called Domperidone, nope, not the alcohol...then 3 weeks ago, I started on a medication called Savella.
Okay first the domperidone. This medication is not FDA approved, so I am going through a "study" in order to receive it, and then it comes from, well, not here. In the past, when it was FDA approved, when used IV it caused heart attacks. Yeah, I know, of all people to be taking this..but the use for this medication is because I have been diagnosed with something called "Gastroparesis". This is when your stomach stops digesting your food, and it just sits in your stomach, causing you a great deal of pain, vomiting, and your stomach gets huge. This, for me, lasts for hours. I was vomiting food that was over a day old. (too much information huh?) So, my cardiologist and the Gastrologist decided I could try it, as long as I had regular EKG's etc.
Next the Savella. This medication is FDA approved for Fibromyalgia. I started taking it 3 weeks ago. Have no doubts, this is a rough medication to take as well. It caused a lot of nausea, stomach pain...even while I am taking the Domperidone. But, I've made it to week 3, the maximum dose.
Now, here comes the scary part. My pain clinic doctor, the one that prescribed the savella to me, advised me that this medication could cause my heart to increase..."7 beats or so", and "your blood pressure to increase some". She told me to call her if this happened.
Now, what has been happening is....My heart rate, though it has been faster than most normal people, which I take 2 different types of medication to keep it down, has been jumping up to around 130, at which time I cannot breath, and I am extremely exhausted!! This is a tad bit more than the 7 beats she warned me about. This only happens... some times, and during those times, I am up moving around, or moving my arms around such as washing my hair. After I sit down and rest, I calm down. This has been happening for a couple of weeks now. My blood pressure, has never gone up, but actually is very low...lower than normal. It's been running around 90/50. So, my pulse and blood pressure weren't doing "exactly" what she warned me about....Ok, I am stretching it here, I know.
I haven't called my pain clinic doctor to report this to her, but I did make an appointment with my cardiologist. (2 weeks) I already had an appointment with my pain clinic doctor, actually tomorrow.
For anyone that has Fibromyalgia, I would suggest Savella. I have been amazed that the "all over" body pain, has been cut literally in half. I have cut my Vicodin use in half as well!! The only pain that it is not touching, what so ever, is the pain in my hips, from the SI joint fusions. (Hmm, still not thinking that fused SI joints are from Fibromyalgia, maybe that is why Savella isn't working on them??) Since I cannot take Advil, or any type of NSAIDS, Vicodin is all I have right now to get to the pain, but I have cut down to 1 in the morning, and 2 before bedtime. Great, great improvement!! (maybe some of the nausea and vomiting was withdrawal??)
Don't be surprised, it doesn't come without some side effects though, but when I asked my doctor and CVS about it, they both said, most people give up by time they get to the maximum dose, but it you can handle it for a short time, the side effect do go away. I agree, at least for me.
This heart issue, I believe is either a mixture of the 2 medications, and I will probably have to give up 1 of them, or my heart is having problems again. I see the cardiologist on the 21st, and hope to just have an EKG to find out. I have had over 10 heart caths now, and I hope not to add to that list, but if that is what needs to be done to find out if it's my heart or the medication...lets jump to it.
So, until the 21st..I'll keep taking my medication, resting when I can, and waiting for the results to see if my heart is failing more, or I need to stop one of the meds...hmmmm, which one???
Since I have now out lived my family on my Mom's side, every twinge of pain I get that "is this it" nagging feeling in my head. I continue to tell myself, "NO", and walk it off, turn over and go to sleep, get on the computer...anything to take my mind off of it to see if it goes away. If not,I pop a nitro or two, and that usually does the trick. (so far)
Six weeks or so, I started on a medication called Domperidone, nope, not the alcohol...then 3 weeks ago, I started on a medication called Savella.
Okay first the domperidone. This medication is not FDA approved, so I am going through a "study" in order to receive it, and then it comes from, well, not here. In the past, when it was FDA approved, when used IV it caused heart attacks. Yeah, I know, of all people to be taking this..but the use for this medication is because I have been diagnosed with something called "Gastroparesis". This is when your stomach stops digesting your food, and it just sits in your stomach, causing you a great deal of pain, vomiting, and your stomach gets huge. This, for me, lasts for hours. I was vomiting food that was over a day old. (too much information huh?) So, my cardiologist and the Gastrologist decided I could try it, as long as I had regular EKG's etc.
Next the Savella. This medication is FDA approved for Fibromyalgia. I started taking it 3 weeks ago. Have no doubts, this is a rough medication to take as well. It caused a lot of nausea, stomach pain...even while I am taking the Domperidone. But, I've made it to week 3, the maximum dose.
Now, here comes the scary part. My pain clinic doctor, the one that prescribed the savella to me, advised me that this medication could cause my heart to increase..."7 beats or so", and "your blood pressure to increase some". She told me to call her if this happened.
Now, what has been happening is....My heart rate, though it has been faster than most normal people, which I take 2 different types of medication to keep it down, has been jumping up to around 130, at which time I cannot breath, and I am extremely exhausted!! This is a tad bit more than the 7 beats she warned me about. This only happens... some times, and during those times, I am up moving around, or moving my arms around such as washing my hair. After I sit down and rest, I calm down. This has been happening for a couple of weeks now. My blood pressure, has never gone up, but actually is very low...lower than normal. It's been running around 90/50. So, my pulse and blood pressure weren't doing "exactly" what she warned me about....Ok, I am stretching it here, I know.
I haven't called my pain clinic doctor to report this to her, but I did make an appointment with my cardiologist. (2 weeks) I already had an appointment with my pain clinic doctor, actually tomorrow.
For anyone that has Fibromyalgia, I would suggest Savella. I have been amazed that the "all over" body pain, has been cut literally in half. I have cut my Vicodin use in half as well!! The only pain that it is not touching, what so ever, is the pain in my hips, from the SI joint fusions. (Hmm, still not thinking that fused SI joints are from Fibromyalgia, maybe that is why Savella isn't working on them??) Since I cannot take Advil, or any type of NSAIDS, Vicodin is all I have right now to get to the pain, but I have cut down to 1 in the morning, and 2 before bedtime. Great, great improvement!! (maybe some of the nausea and vomiting was withdrawal??)
Don't be surprised, it doesn't come without some side effects though, but when I asked my doctor and CVS about it, they both said, most people give up by time they get to the maximum dose, but it you can handle it for a short time, the side effect do go away. I agree, at least for me.
This heart issue, I believe is either a mixture of the 2 medications, and I will probably have to give up 1 of them, or my heart is having problems again. I see the cardiologist on the 21st, and hope to just have an EKG to find out. I have had over 10 heart caths now, and I hope not to add to that list, but if that is what needs to be done to find out if it's my heart or the medication...lets jump to it.
So, until the 21st..I'll keep taking my medication, resting when I can, and waiting for the results to see if my heart is failing more, or I need to stop one of the meds...hmmmm, which one???
Monday, April 5, 2010
It's Off To The Doctor I Go....
Most people around me don't know that I can't see. Most people that I know, that are following this, are going to be surprised to find out, that I can"t see. I am not blind actually, it is just I can't see. Complicated huh? I'll complicate it more as I explain it.
I have Diabetes. A few years ago, I went to the eye Doctor to get new contacts. I knew the ones that I had were about 2-3 years old. Things were pretty foggy by now, not surprised. What did surprise was, this crazy little eye Doctor told me that my eyes were bleeding, but it "wasn't a big deal". He gave me a new prescription and sent me on my way. Thank God, Charles seen the same crazy man, got new glasses, and off we went. Since our eyes had been dialated, we really didn't notice that we couldn't see out of our new lenses. But the next day was a different story.
I got up, feeling like I had 2 different prescriptions, but thought I would wait a few days to 'let my eyes adjust". (knowing quit well, there should never be any adjustment period) I didn't say anything to Charles, and come to find out, he was having the same problem, and not saying anything to me. FInally, after a week, I told him I could not see out of my contacts correctly, and he told me he was having the same problem - - it was like having 2 different lenses. I called and and when I told the gentlemen that I was also concerned that this Doctor told me I had bleeding in my eyes, but it wasn't a big deal, they told me to come right away.
The new female Doctor examined me, and told me I had bleeding in both eyes, which was "diabetic retinopathy", and my prescription was completely off. She gave me temporary contacts because she referred me to a specialist for diabetics, and thought I would need Lazer Treatments which might change my vision again. She then seen Charles, and again, his prescription was completely changed, and he got new glasses. Yes, we both complained, and found out there were numerous complaints about this doctor, and that they had to redo so many prescriptions that they didn't even have to fire him, he quit!
I got right in and found out I did have numerous spots that needed Lazer Treatments for Diabetic Retinopathy to stop the bleeding. I went back in 6 weeks, and my Doctor had gone, but the new Doctor that I seen, I explain to him the fogginess was still there, and that I could not open my eyes in the sun or bright lights at all. NOW, it's cataracts! Both eyes. So, over the next 6 weeks, I would have both of those removed. That wasn't bad at all, not like it was years ago, where you had to wear patches and all. (Surprise, Charles had to have Cataracts removed after I did as well!)
As time went on though, my vision started to get blurry again, and all these wavy lines started to appear on my right side. My left side, was more blurry, with double vision. I was referred back to the specialist for Macular Degeneration. I was way too young for this, and why was this all happening, one thing right after another? I was really scared my vision was going, and going quickly.
I finally got to the specialist. A new Doctor, who seemed right out of school. He was very calming, but told me there was water, built up behind my eye. I guess that is where the "wet' or "dry" come from when you hear WMD or DMD...and there was a lot of scar tissue in my right eye. This is what was causing all the waves in my vision. It looks like one of the mirrors in a fair that makes you tall, short, skinny or fat. Anyway, there was a treatment that was a small dose of a drug called "Avastin". It is a chemotherapy drug, but they just injection a small dose into your eye, basically to dry it up.
Sadly, there is nothing they can do for the scar tissue, but they have had great success with stopping the progression of the disease. How could you say no to that? I made an appointment for the following week.
Charles took me to my appointment, and as much as he does not like needles, he loves me even more. Bless his heart, he went into the room with me while they gave me the injection. No, you don't get put to sleep, and no, you aren't given anything to calm you down, though the great Doctor I had did joke with me telling me HE took the valium before he came in to do the work. ha ha!
They cover your face with a small cover, leaving your eye exposed. Used some type of gadget that holds your eye open, clean all around your eye very, very well. Then they inject numbing medication into your eyeball. After waiting a few minutes to make sure everything is good and numb, they then inject the medication. All you feel really is the pressure. Sounds horrible, I know..but it was worth every nail biting moment. The nurses and the Doctor were great, and just knowing that Charles was right there...priceless!!
Now...that night, was a different story. I guess I was supposed to keep my eye shut afterwards, but I didn't hear that part of it. I guess I was so excited on how painless it was...WAS being the operative word. OMG!!! I felt like I had ground up glass in my eye!!! Keeping it closed wasn't good enough to stop the pain, because if you just moved your eyeball, it was horrible! No, horrible doesn't come close to how I felt. I was so very, very thankful that I had pain medication, and ativan so I could just go to bed, and sleep it off. But..yeah, there is always a but right...the next morning, my eye ball looked like I got into the biggest bar fight, and LOST!!! It was fire engine red!! Poor Charles, everywhere we went, people would glare at him as if he punched me! It took a few dirty, glaring looks before I realized they thought he did it. At the time, his Mother was in the Nursing Home, and we went there almost every night. So the nurses there knew us very well. When I walked in there....if looks could kill!!! They didn't even bother to ask me what happened, they just glared at him. He finally had to start telling people what happened, because this lasted over 30 days. ha ha!! I felt horrible for him.
So, back to the beginning of this story. The injection worked to dry up the fluid that was causing the damage, which we are very thankful for, but the scar tissue remains and causes all the wavy lines on the right side of my vision. The left side of my vision is doubled and blurry. What I can see though, is far away..and I can see it very well! So, reading is a huge problem for me.
When I do read, it needs to be large, and not move, so that I can move my head to compensate for the waves. If it moves, I basically have to start over, finding my place. I cannot read a phone book what so ever....no matter what size the reading glasses are. (or anything else that is the same size print) SO, for the people that know me, and have wondered why I don't read in public, this may answer some of your questions. OR, if you have waved at me, and you thought I had ignored you..NOPE...couldn't see you. I think you get the idea.
But...here is the last but....I am going to a doctor this week who thinks he can make glasses that might...just might be able to help me read!! At least long enough that I don't feel like I am getting motion sickness, headaches, etc. It is the most encourageing news I have had for years when it comes to me seeing and reading again. I really miss reading my books.
So, I am keeping my fingers crossed, but not getting my hopes up too much. I can type on the computer, because the screen doesn't move, and I can make it the size I want..though I do make a lot of mistakes...but I have gotten over that. I decided I would tell others, just incase there is someone other than me going through this as well.
There is hope...every step of the way....
And, if the worst does happen, I guess Charles will get his wish of getting a white Shephard..except this one will be a service dog...oh..I guess this IS what he wanted. ha ha!
I have Diabetes. A few years ago, I went to the eye Doctor to get new contacts. I knew the ones that I had were about 2-3 years old. Things were pretty foggy by now, not surprised. What did surprise was, this crazy little eye Doctor told me that my eyes were bleeding, but it "wasn't a big deal". He gave me a new prescription and sent me on my way. Thank God, Charles seen the same crazy man, got new glasses, and off we went. Since our eyes had been dialated, we really didn't notice that we couldn't see out of our new lenses. But the next day was a different story.
I got up, feeling like I had 2 different prescriptions, but thought I would wait a few days to 'let my eyes adjust". (knowing quit well, there should never be any adjustment period) I didn't say anything to Charles, and come to find out, he was having the same problem, and not saying anything to me. FInally, after a week, I told him I could not see out of my contacts correctly, and he told me he was having the same problem - - it was like having 2 different lenses. I called and and when I told the gentlemen that I was also concerned that this Doctor told me I had bleeding in my eyes, but it wasn't a big deal, they told me to come right away.
The new female Doctor examined me, and told me I had bleeding in both eyes, which was "diabetic retinopathy", and my prescription was completely off. She gave me temporary contacts because she referred me to a specialist for diabetics, and thought I would need Lazer Treatments which might change my vision again. She then seen Charles, and again, his prescription was completely changed, and he got new glasses. Yes, we both complained, and found out there were numerous complaints about this doctor, and that they had to redo so many prescriptions that they didn't even have to fire him, he quit!
I got right in and found out I did have numerous spots that needed Lazer Treatments for Diabetic Retinopathy to stop the bleeding. I went back in 6 weeks, and my Doctor had gone, but the new Doctor that I seen, I explain to him the fogginess was still there, and that I could not open my eyes in the sun or bright lights at all. NOW, it's cataracts! Both eyes. So, over the next 6 weeks, I would have both of those removed. That wasn't bad at all, not like it was years ago, where you had to wear patches and all. (Surprise, Charles had to have Cataracts removed after I did as well!)
As time went on though, my vision started to get blurry again, and all these wavy lines started to appear on my right side. My left side, was more blurry, with double vision. I was referred back to the specialist for Macular Degeneration. I was way too young for this, and why was this all happening, one thing right after another? I was really scared my vision was going, and going quickly.
I finally got to the specialist. A new Doctor, who seemed right out of school. He was very calming, but told me there was water, built up behind my eye. I guess that is where the "wet' or "dry" come from when you hear WMD or DMD...and there was a lot of scar tissue in my right eye. This is what was causing all the waves in my vision. It looks like one of the mirrors in a fair that makes you tall, short, skinny or fat. Anyway, there was a treatment that was a small dose of a drug called "Avastin". It is a chemotherapy drug, but they just injection a small dose into your eye, basically to dry it up.
Sadly, there is nothing they can do for the scar tissue, but they have had great success with stopping the progression of the disease. How could you say no to that? I made an appointment for the following week.
Charles took me to my appointment, and as much as he does not like needles, he loves me even more. Bless his heart, he went into the room with me while they gave me the injection. No, you don't get put to sleep, and no, you aren't given anything to calm you down, though the great Doctor I had did joke with me telling me HE took the valium before he came in to do the work. ha ha!
They cover your face with a small cover, leaving your eye exposed. Used some type of gadget that holds your eye open, clean all around your eye very, very well. Then they inject numbing medication into your eyeball. After waiting a few minutes to make sure everything is good and numb, they then inject the medication. All you feel really is the pressure. Sounds horrible, I know..but it was worth every nail biting moment. The nurses and the Doctor were great, and just knowing that Charles was right there...priceless!!
Now...that night, was a different story. I guess I was supposed to keep my eye shut afterwards, but I didn't hear that part of it. I guess I was so excited on how painless it was...WAS being the operative word. OMG!!! I felt like I had ground up glass in my eye!!! Keeping it closed wasn't good enough to stop the pain, because if you just moved your eyeball, it was horrible! No, horrible doesn't come close to how I felt. I was so very, very thankful that I had pain medication, and ativan so I could just go to bed, and sleep it off. But..yeah, there is always a but right...the next morning, my eye ball looked like I got into the biggest bar fight, and LOST!!! It was fire engine red!! Poor Charles, everywhere we went, people would glare at him as if he punched me! It took a few dirty, glaring looks before I realized they thought he did it. At the time, his Mother was in the Nursing Home, and we went there almost every night. So the nurses there knew us very well. When I walked in there....if looks could kill!!! They didn't even bother to ask me what happened, they just glared at him. He finally had to start telling people what happened, because this lasted over 30 days. ha ha!! I felt horrible for him.
So, back to the beginning of this story. The injection worked to dry up the fluid that was causing the damage, which we are very thankful for, but the scar tissue remains and causes all the wavy lines on the right side of my vision. The left side of my vision is doubled and blurry. What I can see though, is far away..and I can see it very well! So, reading is a huge problem for me.
When I do read, it needs to be large, and not move, so that I can move my head to compensate for the waves. If it moves, I basically have to start over, finding my place. I cannot read a phone book what so ever....no matter what size the reading glasses are. (or anything else that is the same size print) SO, for the people that know me, and have wondered why I don't read in public, this may answer some of your questions. OR, if you have waved at me, and you thought I had ignored you..NOPE...couldn't see you. I think you get the idea.
But...here is the last but....I am going to a doctor this week who thinks he can make glasses that might...just might be able to help me read!! At least long enough that I don't feel like I am getting motion sickness, headaches, etc. It is the most encourageing news I have had for years when it comes to me seeing and reading again. I really miss reading my books.
So, I am keeping my fingers crossed, but not getting my hopes up too much. I can type on the computer, because the screen doesn't move, and I can make it the size I want..though I do make a lot of mistakes...but I have gotten over that. I decided I would tell others, just incase there is someone other than me going through this as well.
There is hope...every step of the way....
And, if the worst does happen, I guess Charles will get his wish of getting a white Shephard..except this one will be a service dog...oh..I guess this IS what he wanted. ha ha!
Saturday, April 3, 2010
Handicap Plates .... and Venting.........
Yesterday, it was a beautiful day to go on a motorcycle ride. We are planning on a group camping trip in June, so we decided to ride down to the camp ground early to see what I may need to have to make it more comfortable. Planning, Planning, Planning...it is not easy to go places with me unless you have planned everything down to the letter, and have all your lists ready, and always plan for the "what ifs". (did you know not all places have 911, some are 511?) Anyway, it was a fantastic day, and I had just been thinking to myself.."so far, so good".
This past week or so, I have been having horrible problems breathing, and a heart rate of 130 or so. This only seems to happen when I am walking or moving my arms around, such as washing my hair, dressing, etc. We did have an episode, as we call them, when I got ready and walked to the motorcycle, but after sitting on it for a few minutes, all was well. I have an appointment with my wonderful Cardiologist on the 21st, which I know is a bit far away, but that is the soonest he can get me in. Besides, today is the 7th anniversary of my Open Heart...what can happen, right?
I'm getting off the subject here. We are riding down South 57, and decide to go into the rest stop. We have handicap plates on the motorcycle, and we pull into the parking spot. I get off, Charles gets off, and holds onto me as we go into the the rest stop. I decide this is way too much work, and need to sit down. He walks me to a bench outside and sits me down. To me, I think it is obvious that I cannot breath, and he is pretty worried. I told him I was going to be fine and run into the bathroom and I wouldn't move. He does. As he comes out, and he is bending down to help me up...here is comes. 2, I would say early 20 something....PUNKS..are walking up the sidewalk. Now, before anything has been said, one of them has made eye contact with me! The other loud mouth, turns and points to the bike and so every loudly says to his friend, "Look as that s&#@!!", "What a F*&^en Dickweed" Dickweed??? DICKWEED??? Okay, first of all, I don't even know what that is, but it pissed me off, quickly! But, Charles being the proffessional that he is, says to the rather large punk.."it has handicap plates on it"...and Me? Being the gracious person that I have turned into said, "Yeah, so F*$# YOU!!!" I haven't a clue where that came from..but it did, and it came fast!! Wow, maybe Charles should take some MMA fighting classes if all this anger keeps coming out. (?)
I guess I should add, this isn't the first time for me. Last winter in my car, I had a women chase me...yes, chase me into walmart, demanding that I move my "F" car!! She screamed at me over and over, cussing at me that there was nothing wrong with me. It started a fairly large group staring, then she just happened to notice the rather large scar down my chest, and said "OH, unless you have heart issues" and she walked away. No, I am sorry, nothing, just walked off to the next person.
A few years ago, I got tired of people making comments about me walking so slow, or where I parked, so I would return the comments with, "I am on the heart transplant list, would you like to tell me your blood type?" But, my Shrink told me I should stop doing that. So, then I told people, "My shrink told me I cannot ask you what your blood type is, because I am on the heart transplant list, so I have stopped keeping a cooler in my car." It stopped a lot of people from asking too many questions...well, the questions that were rude and uncalled for.
Don't get me wrong. I appreciate people that ask people to move out of the handicap spaces. If you don't think I belong there...ASK ME! Don't call me names, or cuss at me. Yes, Motorcycles can and DO have handicap plates just like a car,van and a truck can.
Just some extra insight on life with handicap plates. Just because "we" get to park close to the door doesn't mean you 1. know what is wrong with us. 2. you know how far we have already walked in that store, or the store before that. 3. You know how far we have to walk when we get all the groceries home. It is not just what you see at that moment..it is an accumulative thing.
So, maybe now when you see a motorcycle with handicap plates, you will stop and give some thought to what that person has had to go through just to be able to enjoy a short ride. It may have been the only enjoyable thing he or she had done that entire day. Same with handicap plates on cars, sometimes getting out once a day is all they can handle...You really don't want to be in their shoes!
This past week or so, I have been having horrible problems breathing, and a heart rate of 130 or so. This only seems to happen when I am walking or moving my arms around, such as washing my hair, dressing, etc. We did have an episode, as we call them, when I got ready and walked to the motorcycle, but after sitting on it for a few minutes, all was well. I have an appointment with my wonderful Cardiologist on the 21st, which I know is a bit far away, but that is the soonest he can get me in. Besides, today is the 7th anniversary of my Open Heart...what can happen, right?
I'm getting off the subject here. We are riding down South 57, and decide to go into the rest stop. We have handicap plates on the motorcycle, and we pull into the parking spot. I get off, Charles gets off, and holds onto me as we go into the the rest stop. I decide this is way too much work, and need to sit down. He walks me to a bench outside and sits me down. To me, I think it is obvious that I cannot breath, and he is pretty worried. I told him I was going to be fine and run into the bathroom and I wouldn't move. He does. As he comes out, and he is bending down to help me up...here is comes. 2, I would say early 20 something....PUNKS..are walking up the sidewalk. Now, before anything has been said, one of them has made eye contact with me! The other loud mouth, turns and points to the bike and so every loudly says to his friend, "Look as that s&#@!!", "What a F*&^en Dickweed" Dickweed??? DICKWEED??? Okay, first of all, I don't even know what that is, but it pissed me off, quickly! But, Charles being the proffessional that he is, says to the rather large punk.."it has handicap plates on it"...and Me? Being the gracious person that I have turned into said, "Yeah, so F*$# YOU!!!" I haven't a clue where that came from..but it did, and it came fast!! Wow, maybe Charles should take some MMA fighting classes if all this anger keeps coming out. (?)
I guess I should add, this isn't the first time for me. Last winter in my car, I had a women chase me...yes, chase me into walmart, demanding that I move my "F" car!! She screamed at me over and over, cussing at me that there was nothing wrong with me. It started a fairly large group staring, then she just happened to notice the rather large scar down my chest, and said "OH, unless you have heart issues" and she walked away. No, I am sorry, nothing, just walked off to the next person.
A few years ago, I got tired of people making comments about me walking so slow, or where I parked, so I would return the comments with, "I am on the heart transplant list, would you like to tell me your blood type?" But, my Shrink told me I should stop doing that. So, then I told people, "My shrink told me I cannot ask you what your blood type is, because I am on the heart transplant list, so I have stopped keeping a cooler in my car." It stopped a lot of people from asking too many questions...well, the questions that were rude and uncalled for.
Don't get me wrong. I appreciate people that ask people to move out of the handicap spaces. If you don't think I belong there...ASK ME! Don't call me names, or cuss at me. Yes, Motorcycles can and DO have handicap plates just like a car,van and a truck can.
Just some extra insight on life with handicap plates. Just because "we" get to park close to the door doesn't mean you 1. know what is wrong with us. 2. you know how far we have already walked in that store, or the store before that. 3. You know how far we have to walk when we get all the groceries home. It is not just what you see at that moment..it is an accumulative thing.
So, maybe now when you see a motorcycle with handicap plates, you will stop and give some thought to what that person has had to go through just to be able to enjoy a short ride. It may have been the only enjoyable thing he or she had done that entire day. Same with handicap plates on cars, sometimes getting out once a day is all they can handle...You really don't want to be in their shoes!
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