Yeah, that sounds familiar.
Last week I went to the ER because of some vision problems. They referred me to an ophthalmologist and a neurologist, and told me to get an MRI. The ophthalmologist said that my optic nerves are “pristine”, and my MRI was normal (except for some hardening of the arteries due to the frequent inflammation that happens when my brain senses pain). In the visit to the neurologist, I got to see all of the pictures of the MRI – it was pretty neat. We scrolled up from the brain stem to the top of the head. The parts with the eyes were a little disturbing – your eyes aren’t seen in an MRI, but the outlines are visible. So, nothing to worry about – it looks like fibromyalgia/chronic fatigue syndrome stuff all around.
This week I am going in for memory testing*, electromyography and inner-ear testing. I am not looking forward to the EMG at all – it can be quite painful depending on whether or not your nerves are functioning properly – but it will help to rule out anything the fibromyalgia might be hiding.
I apologize for the lack of updates recently. The last month has been miserable, but I am hopeful that things will get better soon. We are doubling the doses of gabapentin for muscle spasms/pain and sertraline for depression/fatigue. I discovered last evening that massive amounts of coffee (I drank somewhere around 8 cups with dinner) combined with my current medications works amazingly well. I was in the least pain I’ve been in for a couple of years, at least.
If anyone wants to mail me a coffeemaker for Christmas or my birthday, I will be very happy. (I just ordered a coffeemaker from Amazon, since it got me free shipping. I also ordered How To Be Sick: A Buddhist Inspired Guide for the Chronically Ill and Their Caregivers. It is written by a Buddhist person with a disability, and I’ve heard very good things about it. A review will probably pop up here in a few weeks.)
*As soon as I remember to call and make an appointment, that is.
Between the pain and the chronic infections, I’ve passed out twice so far today. I got one of the tutors to cover the last half of my lab section after I passed out the second time (the first time was while I was getting on the bus to go to work), but I have to stay on campus until 8:30 or so to proctor an exam.
The doctor says that it’s not (very) contagious, just an over-reaction from my immune system, and there’s really nothing he can do, so there’s no real reason for me to go home.
That thought in and of itself is pretty toxic – I’m still stuck in this mindset that my comfort and health don’t matter as much as how they affect others. A sick day isn’t meant to make me feel better, it’s to prevent others from getting sick. I can tell myself over and over that it’s okay to take a day like this off, to go home and sleep and let someone else check my section into and out of the exam…but it doesn’t sink in. I know that this line of thought is harmful to me and to those around me, but I get so depressed when I fail to achieve even in the modest task which was my charge (but at least I didn’t steal any money or unrepentantly betray anyone’s trust? Sort of?).
So, I’m staying here in the library until 6:30, then going back to proctor.
Update: I should have gone home. There really wasn’t anything to do besides check students into the exam. It wouldn’t have added that much work to anyone else’s plate. I also – Spoiler Alert! – made myself more sick by staying so late. Pointless.
Over the last couple of months, my disability has worsened severely. Word from my doctors is that, even in the best case scenario, I will never get better, just not worse. Not very encouraging, but that’s the way it is. This news has several impacts on my life plans; primarily, that I will never be able to work a forty-hour week or to do work requiring manual dexterity. There go my plans of being a professor.
So, welcome to the World of New Plans. New Plans that don’t include grad school – what’s the point if the only reason I went to grad school was to be a professor? This quarter was overwhelming enough that I have decided finish out the quarter as a teaching assistant, but not as a student. I’ve talked to someone in the department administration who is going to help me to keep getting paid, even though I’m only TAing and not going to class. It involves a bit of subterfuge, but I am comfortable with that.
I was curious about how my time is spent compared to someone without a disability. The results were pretty shocking:
I am meeting with my therapist/social worker TN this afternoon. We will discuss the best way to go about the mountain of paperwork and hostility that is the application for disability benefits. Fortunately, I have paid into the system just long enough to be covered. What happens to people who have been disabled since childhood?
This decision has been an excruciating one to make. I feel such a weird combination of failure and relief; I may fail at having a normal life, but I will finally be able to help with dinner, dishes, or laundry. My husband and I will be under so much less stress, even when we transition from full-time pay to half-time pay at the end of this quarter. There are a lot of things that have to go right for this to work, but we have enough savings to get through most of the negative outcomes. The others, no amount of savings could help us, so I’m not going to kick myself over those.
I was wondering the other day about how I could be on so many medications and not notice any of the side effects. Then, it hit me: I am so hesitant to add medications – every new piece you add to the giant, convoluted chemical system stresses that system until the system attains a new equilibrium – that I have to be absolutely miserable to do so.
This is especially true in regards to anti-depressants. Like many suffering from depression in the U.S., I waited way to long to get help because of the strong stigma against mental health care here. I couldn’t get out of bed most days because of the depression; Colin literally took me to some of my appointments with the on-campus counselor. As soon as I started sertraline (prescribed by my GP, because I went in for a check-up and just sat there, quietly and ashamedly weeping, when he asked me how I was doing), I felt so incredibly alive again. I know that I gained some weight, but I hadn’t really eaten for a few months, so that was expected and good. I have no idea if my sex drive was at all affected, because I wasn’t exactly having much sex while I couldn’t move.
Each of my other medications has had a similar effect. The only bad thing I’ve experienced as a direct result of medication that comes to mind right now is that most of the weight I gained went to my chest…and bras are expensive. I think I can live with that. Another, more serious, note is that I can’t take most of my medications if I ever get pregnant. My spouse and I are very careful, and are excited about the idea of adoption, but what will happen if my chemical birth control and condoms fail? There is a very fine line between what would be healthy for a fetus – only the meds that keep you alive – and what is healthy for me…it would be an interesting and frightening line to walk. Let’s just hope I don’t have to think about that. 😀
I should probably get around to the reason I thought about this post. One condition – a slight, usually benign arrhythmia – has gone away as a result of gabapentin, a medication for my pain that operates as an anti-seizure medication. It didn’t even occur to me that gabapentin would solve my PVCs…but when I noticed that the palpitations had stopped, I tried caffeine – no PVCs! Then, JS gave me a prescription of Percocet (a tiny dose of oxycodone + a massive dose of tylenol) instead of my normal plain oxycodone; I was hesitant, but it worked! No palpitations, no skipped heartbeats, and best of all, pain relief. This is the least pain I’ve experienced for a month. I’m probably around a 2 or 3 on the pain scale posted earlier, which is certainly fine by me.
I know that I am very lucky to have had this experience with my medication so far. I know that I am extremely fortunate to have found a combination of treatments that works well for me at all, much less to have avoided some of the more painful side effects. To anyone out there experiencing these problems, I wish you luck. I know it’s a terrible process, and one that may never get you to your goal. I thought I would never be at my pain goal of a 2 or 3 again just a few months ago. I won’t tell you to keep hoping, or to keep searching for something that works. That’s your choice – do what makes you happy. That’s really what matters here.
Two doctors’ appointments today…one with TN (psych) and one with JS (phys). My primary objective was to get the letters I needed for the oh-so-offensively-named Disability Office signed by each. Everything else was just gravy.
TN wanted background. We got to…high school. She asks a lot of questions. Also, TN insisted on putting the letter on her letterhead…which took a good fifteen minutes of appointment time. Such is life.
JS was training a med student. Who didn’t read my chart before examining me. I was annoyed by how he kept interrupting me…then I figured out that he honestly thought that I must have been finished. Nope. JS also decided he needed to demonstrate the concept of fibromyalgia tender points to this student. Needless to say, I was not pleased.
P.S.: Not entirely sure how I feel about the “recommended links”. Feedback?
Although I am having luck with some new medications, I have been in a bad flare-up for the last several days, precipitated by some pretty severe emotional stress. I recently found this pain rating chart, and let me just say that I empathized.
On an average day, I would put myself around a 6: ” Ow. Okay, my pain is super legit now.” Right now, I’m closer to a 10: “I am actively being mauled by a bear.” Really, I think my goal is a 0. I think everyone’s goal is a 0. My much-more-realistic-goal is around a 3: “This is distressing. I don’t want this to be happening to me at all.” I’m ready to go to the doctor…but for tonight I’ll just go to sleep at 7.
On the plus side, anti-spasmodics apparently cure my PVCs. Yay, I get to have coffee again!