Friday, October 8, 2010

Did I, or did I not have a Heart Attack?

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.

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.

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!!

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

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.

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.

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!