A Complete Different Story

I guess I can stare at this blank white screen for a few more days, but nothing is going to get told unless I start typing. I am still not quite sure what to say, see now that I know people are reading this, this blog takes on a complete different identity.

I started this blog to give me some where to dump all my thoughts and feelings, just to be able to get them outside of myself and if they were able to help a stranger...got that...a STRANGER, then fantastic, but now, I have friends and family, and even more so, Charles reading it. So, as I am typing, I seem to catch myself in not wanting to upset him, or not wanting to make him worry more than he already does. Life living with me, not so easy, and it takes a lot of strength being here day after day with me, never knowing what is going to happen.

Well, after our Doctors trip last week, we have now added to that stress. I came home with a heart monitor that I have to wear for the next 30 days. This one is a bit different than the ones I have had over the years. After I have one of my "episodes", or actually while I am having one, I put a "record" button, wait for the beeps, and then call the 800 number and then "send" the recording to "them", who will keep track of all the recordings, and they will send the recordings to my cardiologist.

What my cardiologist is looking for is a "real" irregular heart beat, not like the one that I have, which is just an extra one now and then - - sometimes a few right in a row, which takes your breath away. I think the most it will do is cause you to pass out, which then you will breath again. I kind of compare it to when a child threatens to hold their breath to get their way. "go ahead" The worse they will do is bump their head when they fall down. Same here. Your body has certain mechanisms that it does automatically, such as breathing, heart beating,etc.. which brings me to what is probably the real problem with me, as least what my cardiologist is guessing it is.

Autonomic Neuropathy. (different varieties) My cardiologist seems to think this is the real culprit. This is very common in Diabetics. I keep telling myself, I have only been Diabetic for 12 years now, and I never thought mine was that out of control, but nothing about this body seems to follow the path of normalacy.

The things your body does without being told, digesting food, breathing, heart beating, puplis dialating, body temperature, are a few of the things that are not working on me any more. I have to take pills to get my stomach to digest my food now, and have looked into pace makers that are actually implanted in your stomach that tell your stomach to work when it is signaled by the food. My heart rate jumps up to 130 or higher when I am up walking, or moving around. I couldn't imagine if I ran or did some type of exercise. I already take 3 types of heart medications, which obviously don't keep my pulse down unless I am sitting down or in bed. I am out of breath and exhausted most of the time, which I am guessing is because my heart is beating so fast all the time, and it's trying to keep oxygen everywhere it needs to, and it gets tired as well. My body temperature is much lower than normal, my hands and legs are always cold, which could explain why they are always in such throbbing pain. My puplis I didn't realize was caused by this until now. I have had a lot of problems with pain in my eyes when I am outside. No one seemed to know the cause, the eye doctor just told me to where darker sun glasses, and bigger ones that wrap around so the sun doesn't get in.

The list can go on and on...and from what I understand, it will. I am caught between it's nice knowing, finally knowing what this all is, to, Oh Shit...THIS is what I have? I told my cardiologist I really haven't had that many episodes, but now that I have to call them in, I'm having about 3 per day. A lot more than I realized. It's like keeping a food journal. You don't realize how many bites of cake you really were sneaking until you got honest and wrote it all down. Now that I have to tell someone every time, I have to get honest with myself on how often these are actually occuring.


I have been in bed or on the couch since we returned from the Doctor. I am exhausted. Oh, I have done little things around the house, showered, some laundry, but after everything I do, I am out of breath and so tired, and head straight back to the couch or bed. It's been raining, so I am glad I have had an excuse not to go anywhere, and the Bike has remained in the garage.

I don't know if this is depression? Is it relief of finally, someone gets it and now I can take a break? Is it just in my head because there is relief of FINALLY someone gets it, or I am just exhausted from having so many episodes? I really don't know, and I don't know if it's important or not. What is important is, where do we go from here?


There is no cure. It is progressive. How progressive it gets, I really don't know. But, instead of writing down ALL those diagnoses, now can I just write down ONE??