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??
Monday, April 26, 2010
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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