I…can’t…decide…

January 28, 2013

My brain is on overload.  I just can’t handle it anymore.  There are too many decisions to be made and too many variables to consider.  My cognitive function is much better than it was a year ago, but still not where I should be.

Now, never mind the “little” decisions, like whether to visit someone who was with X yesterday, and last night X came down with norovirus, so the person I want to visit may or may not have been infected.  Or the fact that my eyeballs hurt, and that could have been from rubbing them too much (the air is so dry here) or it could be a symptom of one of the major eye illnesses I’m that could be a side affect of the Prednisone and/or Plaquenil I’ve taken over the years, so maybe I should see the eye doctor even though I just saw him recently.  Let’s ignore those “easier” decisions right now.

The more complicated issue is the medication that my insurance won’t cover.  I could pay out of pocket.  It’s too much money, but then, everything is too much right now.  I could see my doctor, who has an opening today, to discuss other meds.  But we’ve already sort of discussed those, and he didn’t think they were good options – that’s why he prescribed this one!  I could try one of the supplements from my naturopath, but she admits dosing will be difficult at first, so that could be unpleasant for a while.  Doing nothing isn’t an option, thanks to the bad symptoms.  Of course, in 3 weeks I find out about the disability insurance appeal.  If I win the appeal, then I get my old health insurance back and I lose this insurance, and the old insurance will cover this drug.  Then again, if I lose the appeal, I’ll be stuck with this insurance indefinitely (depending on medicaid, but I’ll get to that) and so I’ll need a solution.

And tied into that is state medicaid.  I was denied for it, and I appealed that denial.  A hearing date for the appeal was set, and it happens to be just a couple of weeks before I’ll find out about the disability insurance appeal.  If the disability insurance is instated, then I get my old health insurance back and I’m not eligible for medicaid.  But if I lose the appeal, I might need medicaid.  Then again, I have no idea if medicaid is better than what I have now, because no one will tell me what it covers.  The price can’t be better (I have no premiums now and almost no copays) but maybe it would cover that med or other things that my current insurance won’t cover.

So how do I make this decision?  My doctor has an opening in 4 hours.  Technically, there’s no cost because insurance covers it.  But there’s the emotion toll, especially of having to deal with a doctor who’s derisive towards the other treatments I’m pursuing, not to mention who will probably tell me that the insurance-covered options suck.  Then there’s the energy I’d have to expend to get there and back.  And the time and gas to drive 30 minutes there and one hour back to get home during rush hour, thanks to the timing of that opening.  It probably won’t help.  But can I afford to not pursue a potentially viable option?

And what about that medicaid hearing?  Should I spend many hours and a lot of cognitive effort to read 150 pages of case notes, including hardly legible HANDWRITTEN (!) notes (do they realize we’re in the 21st century now?) in order to prepare for the hearing, in order to fight for insurance that may not be better than what I have and that I may not be be eligible for in a few weeks?  And do I want to put myself through the hell of trying to prove how sick I really am to people who want to insist I should be well enough to work, just because my previous jobs were “sedentary” and they don’t seem to understand that even a “sedentary” job requires being alert, walking to the bathroom, walking to get water or food, and of course getting up early every day, getting dressed, and commuting.  Then again, medicaid could be my best option.

I want to tear my hair out (if only my hair wasn’t so thin already from my illness.)  These decisions are too hard, especially for someone who is emotionally involved and cognitively not at 100%.  It’s too much.  It’s just too damn much.


Skipping the handshakes and the hugs

January 24, 2013

It’s the season of contagious viruses again.  I am amused that as I sat down to write about this, I realized it was almost exactly one year ago that I wrote a similar post.  The big difference now is not in the outside world, but in me.

One year ago, I wrote about how easy it was to catch those germs from other people, especially through socially-mandated handshakes.  What’s changed is that I’m ignoring the social norms.  Last week I avoided shaking hands when I should have, I backed out of a couple of hugs, and I stopped mid-high 5 as I remembered the germs.  Each time, the person was surprised, but a quick, “I have a lousy immune system and the flu is going around” took care of it.  I was amazed at how well people have been responding so far.  Every time I make plans with friends, I ask them if they think they might be coming down with anything.  They aren’t offended, and they understand why I’m asking.

I think the real test will be next week.  I’m going to an event where friends will want to hug and every new person I meet (and there will be many) will want to shake hands.  I plan to wear pretty lace gloves that have been sitting in a drawer just waiting to be worn.  They’ll be a bit of a barrier.  Still, I will try to avoid hugs and handshakes.  I hate to tell people that I have a bad immune system, but simply saying that I’m worried about the flu makes me sound paranoid.  I could say I’m worried about the norovirus (which sounds worse than the flu to me in many ways!) but that’s probably no better.  When the time comes, I’ll figure it out.  But whatever I say, I know what I’ll do…. or actually, what I won’t do: I won’t risk my health by bending to social pressures.  Let the others shake hands and then pick up the veggie sticks and sandwiches.  I’ll be keeping my hands clean… and a bottle of hand sanitizer in my purse, just in case.


A new low: suppositories

December 5, 2012

About a month ago I wrote about some of the varied “gross” aspects of my health issues.  These have set a whole new standard of “grossness” for me.  I don’t think twice about some things that would make other people really cringe.  And yet, this week’s prescription of suppositories really got to me.

I have had gastrointestinal problems for many, many years.  I’m not even sure when it all started, but I’d say it’s been around 18Suppositories years now.  That’s 18 years of pain, cramps, diarrhea, constipation, gas, heartburn, and nausea.  Oh, and fear.  Definitely don’t forget the fear.  There were so many nights I lay on the bathroom floor, doubled up in agony, wishing the pain to go away.  There were times I hoped I’d die.  I have spent countless hours dealing with this stuff over the years.  At times, it has felt tortuous.  Sometimes, it was worse than any of the other pain I had throughout my body.

So that’s some basic background on why GI stuff is a sensitive area for me.  I guess a lot of people would have emotional issues after 18 years of that.  Thanks for getting through that.  As a reward, here’s a more fun example of my emotional response.

I love sex.  I miss sex, but that’s a subject for another day.  Today’s point is that I love sex.  While I’m not ultra kinky, I’m definitely somewhat kinky, and I’m open to trying a lot of new things.  I’ve been tied up, spanked, and part of a threesome.  I’ve tried a lot of different positions.  I’ve had sex in public places.  I’ve taught my partners to be more kinky.  I’ve taught my partners new positions and techniques.  I’ve worn a collar, used toys, and made all sorts of sounds.  It’s not like I’ve tried everything, but I’m open-minded.  I only have three rules: (1) I’ll only have sex with consenting adults (2) I’ll only have sex with people I trust (3) I won’t let anyone do anything ass-related.  Yeah, that last one is a bit of a surprise, right?

So if I won’t let anyone put anything up my ass for sexual pleasure, do I really want to do it with a medication?  I mean sure, the affects of the med should last longer than an orgasm.  And maybe the med will help me get healthy, which will get me to the point of dating again, which means I’d start having sex again, which would be fantastic.  But that’s a lot of “ifs” and really, she wants me to stick medication up my ass!

After 18 years of pain and everything else, I just can’t stand the idea of using that out-hole as an in-hole.  I can’t do it.  I have rearranged my life for my health.  I left my job.  I started an intense diet.  I stopped dating.  I limit social time with friends.  I limit time with family.  I take a huge assortment of medications, supplements, and homeopathic remedies.  But I can not, I will not, stick anything up my ass.

I finally told my doc of my emotional discomfort with this so she gave me an alternative: it can be inserted vaginally.  Bingo!


Getting bullied by bureaucracy

November 25, 2012

I was never one of the cool kids in school.  That didn’t bother me at the time, and it doesn’t bother me now.  It’s just a fact.  I had friends, and they weren’t considered “cool” either.  I studied and mostly got good grades.  I wasn’t athletic.  I didn’t participate in any of the “cool” clubs.  I didn’t act, and even worse, I did stage crew.  Yeah, I was one of those kids.

On the other hand, I was never bullied or subjected to peer pressure.  I didn’t drink, and no one ever tried to get me to drink.  I didn’t smoke or do drugs, and no one ever offered them to me.  I wasn’t teased or harassed.  Well, there was the boy who used to tease me and chase me around the playground when we were 8, but in hindsight I realize he probably did that because he liked me.  And anyway, he stopped doing it after I kicked him in the groin one day.  Someone tried to cheat off my work once, but there was no pressure.  I just noticed him looking at my paper during a test, and I guess I could have hidden the paper from him.  I hated that class and did really badly in it, so I didn’t bother to hide paper, and was sort of gratified when I got a C.  I never did find out his grade, but I gather it wasn’t so good.

I got through my entire life (so far) without being bullied in any of the standard ways, but now I realize that I’m being bullied after all!  I’m being bullied by the insurance companies.  This may not be the person-to-person bullying that others have experienced, but it still feels personal.  My life is horribly disrupted.  I think about it far more than I’d like to.  I may lose my home.  I have to be public about certain parts of my life that I’d rather keep private.  I’m being told they don’t believe me (essentially) and that they won’t give me what was promised to me.  I’ve spent hours brooding over the situation, trying to come up with nonexistent solutions.  I have enlisted the help of someone else, but still the bullying continues.  Standing up for myself only seems to prolong the misery.

I’VE HAD ENOUGH!

There’s no perfect answer.  All I know is that I am sick (no pun intended) and tired (again, no pun intended) of being treated this way.  I want to get the benefits that I deserve!

My appeal was filed a week and a half ago.  By law the insurance company must respond (even if it’s only to ask for more time) within 45 days.  That puts it right at New Year’s Eve.  I don’t know what the new year will bring.  I hope, I desperately hope, I achingly hope that it does not bring more fighting.  But if I have to fight for my rights, then that’s what I’ll do.  Let’s hope it doesn’t come to that.