I've been struggling with autonomic neuropothy. Once upon a time last week, I really didn't take care of myself the way I should. Granted it's gotten a lot better since when I was say, 15, when my sugars were in the 400-500 constantly (I had an hba1c of almost 14. Now I dont often go over 300 on my worst of days) I still could do a lot more to take care of myself.
Point is, I'm reaping the benefits of being a lazy adolescent and am having trouble with my heart now. The left ventricle of my heart won't open fast enough when I stand up, leaving he horribly orthostatic. So my endo put me on the lowest dose of Florinef there is. And it works.
The drawback? It makes me incredibly puffy, and there is a side effect of weight gain. Let me talk about puffy. My ankles and calves swell to the point where I can't even wear shoes, and It's painful. My skin feels like it's going to tear open. It's extremely uncomfortable to even wear pants, because when they touch my legs, it either hurts, or I can't get my damn swollen legs to even fit in them. The weight gain? I've been on the med for a grand total of a week and the swelling started on day two. I haven't noticed any weight gain yet, but I'm extremely OCD and I freak out if I gain a pound. I'm scared to death it'll slow my metabolism down to a grinding halt
Here's where I can't win. To combat the swelling, I tried taking half the dose. DID NOT WORK. I might as well have just stopped taking the pills all together. Only without them, I can't even stand. However when I do take them, I can't stand anyway on account of how swollen I am. So what's the point? On top of that, I take antidepressants for my OCD and for depression, which I was taken off of because I was told they would make the orthostasis worse. So therefore the only thing that'll help me get through all this, I can't take.
I have an apt with my endo on the 18th, but in the mean time, I'm going crazy. I feel frustrated, discouraged, and I hate life right now. I can't help but feel like "Hey, you have no right to feel this way, because this is all you're fault anyway." But I do. I watch my friends and family lead normal, active lives where their only worries are whether or not they'll be able to afford their Netflix this month, or if they can afford to go to such and such concert. Meanwhile I keep quiet because I think they ought to shut up and get some REAL problems. Like, hey, nevermind how I'm going to pay for rent, how am I going to pay for this insulin to keep myself ALIVE if I can't even stand long enough to hold down a job so I can make money to get said insulin or health insurance so a doctor will help me figure out why it is that I can't stand the heck up?
No one said life was easy, but it shouldn't be this hard. I want my antidepressants. I just want to be able to deal with this a little better. I want all of this to go away.
And while I'm dreaming, I'd like a pony.
Read Dr. K. Bernstein's Diabetes Solution and also his Diabetes Diet. He has had diabetes for 67 years and now a doctor at 80 years of. He reversed heart complication kidney complication and eyes complication with very low carbing.
Look him up google him. Also try Jenny Ruhl www.bloodsugar101.com.
Wow, you have articulated your problem really well, and that is so key to moving on to solutions. Are there no ways to get your insulin paid for? I’m Canadian, but surely in the US there alternatives for you. And opening up here, with all these great caring people to help you is another thing you’ve done right. Keep us posted, ok?
Gb: To my knowledge, there is not. There is over-the-counter insulin, but it is not the best and I have heard that people have had trouble with it. On its own, the insulin is not that expensive, but coupled with everything else diabetes related that I have to work into my budget, sometimes it seems impossible.
Katy: I have an unbelievably strict diet (father has had 5 heart surgeries and I work at the Bethesda Heart Institute!) But I'm going to check that out. Thank you!! I'll take all the help I can get!
nuropathy is by far one of the worst by products of diabetes. I have seen feet and ankles swell from this complication. As a matter of fact as I read your note all i could think of was my mom and this disease. It was truly awful. i am sorry it is happening and I wish you the very best and please be careful. Standing, walking moving can be dangerous.
It really is an awful disease. Not just for those suffering from it, but for the families of those having to live it with their loved ones.
sorry to hear you're having such a hard time, ugh! what are you symptoms of autonomic neuropathy. didn't you have really bad swelling when you started some insulin, too? high blood sugars can cause weight gain.
The only symptom I'm having is the low blood pressure, which my doctor told me is caused by the left ventricle of my heart not opening quickly enough when I stand. My blood sugars aren't that bad, but since I have been on this pill I have noticed that they have been higher even though I have not been eating more, or taking less insulin.