I’ve been in this odd place where things are going better with the Behcet’s, but not better overall. To say it’s discouraging feels like an understatement. My neurological issues haven’t gotten much better, despite my Behcet’s being relatively in remission. For a while I had no symptoms, but due to repeated infections, I had to stop taking Cell Cept for a while. I’ve noted some ulcers on my legs, but nothing like the ones before chemotherapy. My stomach has not responded as well as I had hoped.
Weight gaining happened, but it’s not because I’m eating healthy. I cannot digest things that are difficult to digest normally. No meat, no dairy, and definitely no raw vegetables or fruits. Greasy foods also give me issues. Today I noted a decent amount of blood when I went to the bathroom, which is frustrating. My neurological symptoms have been brutal, and my belief is that it’s related to my stomach issues. I cannot digest well, leaving me either dumping food through very fast, or (more commonly) having food sit in my stomach for hours upon hours. My heart rate and blood pressure are still erratic. Seizures have been relatively well controlled with the addition of a new medication, but consciousness isn’t going great. Heat, stress, and fatigue, all cause me to see stars and black out.
The financial toll has been severe. I’m looking at trying to return to work because my disability was denied, but no place near me works with my health. I can’t lift, bend, walk, or stand, for any prolonged period of time. I also know that any job, even if it met my physical limitations, would be hard to keep because of my fluctuating health. One day I feel great, the next I have the shakes and can’t get out of bed. There isn’t a warning, either. I literally wake up some days, and my body just can’t function. I’m hoping neurology will officially diagnose me with POTS, the hyper adrenal form, and begin the process of getting me a wheel chair. I personally hate the idea of people seeing me in a wheel chair, but I also hate having to avoid things on my weaker days.
Behcet’s takes a toll on your body, as do the treatments for the condition. I don’t know that I’ll ever experience a true remission, because symptoms seem to linger even when the disease isn’t very active. My fatigue is brutal, and neurologically it would appear that I’m doomed to have issues regardless of the status of my Behcet’s. POTS is a secondary condition that a lot of people with autoimmune diseases experience, but diagnosis is difficult. I did a 24-hour urine years ago to test catecholamine production, and the results did show an elevated level of catecholamines, but at the time we were looking for adrenal tumors…I had none.
I’m frustrated. I know my body, and I know medicine, so it isn’t difficult for me to put together my symptoms and recognize how clearly hyper-POTS fits my set of symptoms…but I can’t do anything about it. The doctor has to diagnose me, and thus far all he’s stated is that I have autonomic neuropathy of some sort. When I see him in a few weeks, I plan on bringing up POTS specifically. I hate being the patient who tries to diagnose themselves, but then again, how else do I push for my needs?
My roommate is pushing for me to get my license back, but it isn’t that simple. Even if I could go six months without a reported loss of consciousness, I still wouldn’t be able to drive in a lot of circumstances. My ability to focus, sit up, and not black out or get dizzy, is very limited. Additionally the stress of going back to work, would mean that I wouldn’t be able to drive safely anyhow. He means well, but he just doesn’t get it. Not having a license sucks, but it’s also a reasonable safety measure that I understand. I may get warnings before seizures, but that doesn’t mean I am safe. Even if I can pull over and relax, it can take hours before I’m okay enough to drive.
Life just feels like it’s slipping away. I want so much to get into a normal routine, work, dogs, food, friends…but it feels like a pipe dream. I just don’t know anymore. I don’t know how to be myself in this damaged body.