I got a call from my Cardiologist's nurse telling me to take off my 30 day heart monitor, and mail it back to them. It had only been 14 days, to the day. I ask her what they found out. She states, "I don't know, I was just to pass on the message to take it off and mail it back". Seriously? She has worked in Cardiology now for some time, does she not yet realize just how paranoid we get over every little change in our routines? Please!
"Could you please have him call me ASAP?"
"of course"
2 hours later, he calls, and bless his heart, talks to me for every second that I need him to, explaining every little detail that I need him to..over and over and over.
He confirms that I have Diabetic Neuropathy, he also tells me that I have "sinus tachycardia", which at that point I am thinking, "no big deal", because that just means having a fast heart beat, and we already knew that..right? Then he tells me he is sorry, that I have a "special" kind....yeah, of course I do, I always have a special kind. I have a special heart, remember. One that no one has seen before. Anyway...
I have Inappropriate Sinus Ttachycardia. (IST) Which means that when I get up to go to the bathroom, my heartbeat starts out at a normal beat, such as 68-72, then jumps to 160 before I even get to the bathroom. That explains why I am out of breath, tired, and feel like I am going to faint. My blood pressure remains at 90/50. Since I didn't do anything but sit around, go to bed, and go to the bathroom, we really have no idea what my heart rate will go up to during strenuous activity. During my bathroom trips, it was 160. (I have since counted to around 200, but losing count all the time because it's so fast, or irregular?)
I also have Dysautonomia, which I believe is about the same as the Diabetic Neuropathy. Anything that is Automatic in your body, breathing, heartbeat, digestion, body temp, circulation, etc...mine is a mess. It is no longer "auto- matic" I already take pills for my food to digest, wear a zipper hoodie all year round to take on and off quickly to regulate my body temperature, expect for the freezing hands and feet, there is nothing to be done there...sorry Charles!!, My puplis. My Eye Doctor couldn't figure out why it was so painful for me to go out into the sun..SOMETIMES. He kept testing me, and couldn't find anything wrong. Well...it seems that dilation of your pupils is another automatic thing, and sometimes one or both of mine will do it when they choose to. And when they choose not to, it's like when the Eye Doctor dilated your eyes in his office and you walk out in the sun without any sun glasses. OUCH! Breathing, there isn't anything I can do about that other than walk slowly. Being careful about doing activities after I eat. My heart rate is going to be regulated by changing my medication, again.
To give you an idea of the amount of medication I'll be taking just for my heart rate, my father just had his second open heart and he takes 10 mg of atenolol, I am now taking 100 mg of it to keep my pulse down. So far, it seems to be working better than what I was on. The main side effect I have noticed is that I am even more tired that I was before. Not pleasant. Not pleasant for others to have to deal with either.
As time goes on, there are other effect that aren't so pleasant that may pop up. My medication that I take to eat may not work any longer, so they are working on a stomach pacemaker to jolt the stomach to work. The intestines may stop working, or work TOO much, and the control of them and the bladder may be gone. Just think of everything that your body does that you don't tell it to....that is what will be effected.
How do you explain to people that a 48 yr. old women is exhausted, all the time. The savella I take is helping a great deal with the pain, so there goes that excuse to be in bed. I have no excuse but I am SO tired. By 4 p.m. I can barely keep my eyes open, by 4:30 p.m. I am asleep. By 10 p.m., I am awake and watching movies, or watching Charles sleep thinking how lucky I am that I have someone that is so supportive of me, and tries so very hard to understand what is going on. Thank God he goes into the Doctor's office with me, and asks questions so he can be just as informed as I am! How did I ever get so blessed??
I am praying that I will adjust to this medication, quickly, and will feel normal. Normal, now there is a word I don't usually use. I don't even know what it is, or what to use about myself to compare it to. It's been so many years now that "something" has been going on, I wouldn't know what normal is.
When I was pregnant with my daughter, a week before her birth I noticed my legs were huge! The next few days, I couldn't put on my shoes. The next few days, couldn't put them on even without the laces. I really didn't feel good, but I think it came up on me so slowly that I was tolerating it well enough, I didn't feel the need to go to the doctor. If I had woken up, and BAM, swollen everything and sick, it would have been a different story. The day I delivered her, I was at the hospital, walking into the ER and stopped to go into the restroom and looked into the mirror, and noticed my eyes were just slits, my face was so swollen. Why I hadn't noticed this before? Don't know. Guess maybe because I had a 5 1/2 yr old and a 10 month old..who knows, but it just hit me, I was very sick and better hurry!!
When they seen me, they all knew. My blood pressure was 220/190 and I was very sick. Padded the rails, turned off the lights for seizure precautions. Lucky for me, I have never had a labor longer than 4 hours, that being this one, and all went well. Both of us survived okay. A few weeks later, I realized how good I felt...Normal!! I also then realized just how SICK I felt as well. I had something to compare it to. It has been so long now that I don't have that feeling to compare it to now. THIS has become normal to me!
I am so sad that my sister Chris didn't have a Doctor that caught on to what she was going through. I now understand all her symptoms of not being able to breath, the horrible fatigue, her racing heartbeat, and the all over body pain. All the Doctors she went to see could not find anything wrong with her. Clear chest x ray, normal blood work..nothing. They would send her home making her feel like she was just lazy and paranoid that her cancer had come back. Nope. I don't think so. She had been diabetic about 10 years longer than I have, and on insulin alot longer as well.
Don't get me wrong. I am so happy that we finally have a name to part of what I have. There isn't a name to what is wrong with my heart. But I am sad that I couldn't get Chris to my Cardiologist sooner. We had talked on Weds night making our promise to go see my Cardiologist on the following Monday. She went into cardiac arrest the next night, and passed on that Monday. Did we wait too long? Could they have been able to do anything even if we had gone that night? I don't know...nobody does. I guess that is one answer I will never have.
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