I may have underestimated how much I have going on in my life currently. I said I would be back after my crash, but then Monday I had my neurology appointment and Tuesday was therapy, so they each came with their own downtime. We’ll get back to my Sunday and my crashiness another time. Right now my high brain pressure is what’s overtaking my thoughts, so I’m going to go there for a bit. My neurologist, Dr. J., is consulting with another doctor, Dr. M, who I may be seeing as well to get his thoughts on my condition and my treatment issues.
I have to, at least temporarily, restart the medication that kills my sex drive as we don’t want this to worsen while we work on finding a treatment plan. The reality is I may have to continue with that medication the rest of my life. Not something I consider with any sort of happiness, but the reality is that between my vision or my sex drive, I would rather keep (both, but if not…) my vision. So, back on the pills I go, and immediately notice another side effect that I hadn’t realized. Yay. Trading pain for misery and pain isn’t high on my list of things to do, but we do what we have to in life.
Dr. M is a neuro-opthalmologist, so basically brain/eye issues, he works mainly across the river but has office hours on this side. I didn’t know whether or not there were any neuro-ops on this side, honestly, which was why I went to the Dr. J in the first place. He works at the same practice as the man that diagnosed me five years go – the one that retired… If you’re looking for a specialized specialist, it feels prudent to get the referral from someone else in the same field.
Explaining my problem to Dr. J. I broke down crying three times, maybe more… it’s a good thing they keep tissues on the desk. I was trying to explain the difficulties in making it to appointments across the river, the fact that although I have gotten past a lot of my agoraphobic issues, I can’t travel alone to the city yet, the difficulties with the side effects, how terrified i was that this was still happening…
I had to stop myself and just explain that I’ve been having a really rough month, that although IIH was plenty reason to be upset, I’m usually more composed in these situations. He’s a nice doctor, he just nodded and said “Well we get through it, right?” Right. So apparently, for my condition there are medication treatments (the other easy one of which I’d already been on for psych reasons and had an adverse reaction), there is putting in a shunt – which is actual brain surgery, and there is a type of eye surgery that I do not know much about nor do I know if that’s even a possibility for me. These are why I need to see Dr. M. … after I get brain scans and follow up with Dr. J.
I am scared. Often IIH (idiopathic intracranial hypertension) will resolve itself. In many patients, it does. For some of us, it doesn’t and then they try harder to find out why – is it a medication, is it something else? We don’t know. So right now my brain is acting like there is a tumor in it, even though there is not (hence the other name for it – pseudotumor cerebri). I am scared… That kind of scared where you just want to curl up in a ball and cry. But I won’t, not yet. I have too many other things to handle. Medications, finding a psychiatrist, discussing blood tests with my GP, grieving the loss of a friend, trying not to isolate myself even though I want nothing to do with people.
I may be preoccupied with my health lately, and my own life situations, but I feel like I have enough going on that it’s a valid way to react. I am used to putting myself aside for others and right now I can’t. The situations going on could land me in the hospital if I’m not careful so I need to put myself first. If others can’t see how this is a healthy way to cope, that’s just not my problem. Luckily, most of my friends, if I don’t respond to their messages, understand that I see and hear them, I just can’t invest myself right now. I have really good, very supportive friends. I am lucky in that while my health may be a problem, my support network is part of my solution.