Too sick to work? Never! Ish. (Updated)

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.


Transitioning to Disability

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:

  • After considering time needed for sleep, for my commute, and a frankly generous estimation of time spent in the doctor’s office and/or pharmacy, a TAB in my situation would have about 105 hours.  I have about 46 hours.  This is before considering a work-week.  46/105 is 44%.
  • After a forty-hour work-week, a TAB would have about 65 hours.  I have 6.  6/65 is 9%.
  • If instead I worked a twenty-hour work-week, I would have 26 hours to a TAB’s 65.  26/65 is 40%.  That’s a number I’m willing to deal with.

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.

Medicines and Side-Effects

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.

Dealing with the Disability Office, Medical Students, and, Oh, So Much More

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.

Staying on the anti-spasmodic and the weird combo of anti-depressants, only one of which is being used to actually treat depression. Hooray for successful off-label use of generic drugs!

Exhausted. In pain. Ruing the purchase of gross pizza from Gino’s…never going back there again. Yuck. I’m sticking with Giordano’s and Lou Malnati’s, thanks. Normal night.

P.S.: Not entirely sure how I feel about the “recommended links”.  Feedback?

It’s me!

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!

First meeting with TN

Fgh.  That’s the closest I can get to the sound my brain is making right now.

First meeting with the new psychologist (who, with the initials “TN”, will inevitably be called “Tennessee” in my head from now on.  Great.) today (despite my failure at calendar-keeping that sent me there last week expecting some psychological relief).

I hate first meetings with therapists.  There’s sooo much paperwork, especially when you have to give a detailed account of all past abuse, self-harm ideation/attempts and suicide ideation/attempts, and go through all of the depression/anxiety checklists.  The latter basically sounded like this:

TN: *Peanuts Teacher Voice*
DBR: Yes.
TN: *Peanuts Teacher Voice*
DBR: Yup.
TN: *Peanuts Teacher Voice*
DBR: Yes.
TN: *Peanuts Teacher Voice*
DBR: Um…I don’t think so.
TN: *Peanuts Teacher Voice*
DBR: Yes.  Oh!  Wait!  That last one was yes, too.  Sorry.
TN: *Peanuts Teacher Voice*
DBR: Yep.
TN: *Peanuts Teacher Voice*
DBR: zzzzzzzzzz

Fun, fun times.

The psychologist (herebefore-and-after referred to as TN because I really am that lazy) said that my affect was good, and I seemed only moderately depressed today.  Hooray.

Hopefully we can get into some of the more urgent problems next week.  Until then, I’ll still be here, feeling relatively shitty and unable to do some of the more emotionally demanding tasks on my plate.  Thank goodness for pain meds, for wheelchairs, and for very nice apartment managers (what do you call the landlord’s son who does all the maintenance?) who lug your chair inside for you with apparently little effort as you struggle to keep up going up the steps to open doors.  It’s been a terrible couple of days pain-wise, and all of those things and people have been so very helpful.  I’ve gone to work, and done everything that needed to be done, and it’s been great.

Time for a nap.

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