Missing opportunities because of illness

January 31, 2013

It isn’t just any job, it’s THE job.  I’ve wanted this job for years.

I used to work in a certain position in a nonprofit.  Then I quit my job and started volunteering at a nonprofit while I looked for new work.  I already had some friends who worked there, and I quickly became friends with a lot of the rest of the staff.  I loved going there, I loved the people, I admired the work they did.  I still volunteer there from time to time when I feel up to it.  They are all fantastic.  I wanted to work there, but there was just the one position that I wanted, and it was filled.  I got the impression the guy might leave, and I was hopeful, but I think something happened to change his mind, and he stayed.  I was so disappointed.  I could have done a fantastic job there.  That was years ago.

Today I found out that he just gave his notice!

I still want that job.  The people are still amazing, the location is still fun, the benefits are still unbelievable.  I don’t know the salary, but I have reason to suspect that it’s in a reasonable range.  If I was able to work, I’d apply tonight.  If I was working someplace else, unless it was a really unbelievable place, I’d apply tonight.  If there was any way at all…. but there isn’t.  My health is lousy.  I couldn’t even work part time right now, never mind full time.

I’ve missed out on a lot of things because of my lousy health.  There have been dates and friendships and romantic relationships and hobbies and family events and social gatherings and career opportunities and so many other things that I’ve missed out on.  Really, this is just one more.  But this hurts.  This is THE job, and I can’t even apply.

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Paranoid or realistic about symptoms?

January 30, 2013

If you have multiple chronic illnesses, then you probably have a huge array of symptoms, and you probably never know if a new feeling is a symptom of an existing condition or if it’s something new.  This always leads to the conundrum: to see the doctor, or to not see the doctor.  If I went to the doctor for every new odd sensation, they’d think I was a hypochondriac.  On the other hand, I don’t want to miss something important.  It can be a fine line.

A few years back, I kept getting numbness in my left hand.  It came and went for several weeks and I just tried to ignore it.  Finally, while I was in the car with a friend who has multiple sclerosis, it returned.  I asked him for his advice and he said what I was thinking: I should get it checked out.  When I got around to it.  No rush.  As someone with a chronic illness, he understood how absurd it would be to freak out over every little thing.  I did finally see the nurse practitioner at my doctor’s office.  She declared it to be a pinched nerve and she prescribed physical therapy.  I had just finished a long round of physical therapy for my back/hips/knees and I didn’t want to expend my time, energy, or money on another round.  I asked her what would happen if I didn’t do it.  She seemed confused.  I clarified: if I do nothing, could there be long term damage to my hand?  She said no.  Could it fix itself?  She said yes, that was possible.  I decided to ignore it.  It eventually fixed itself and I didn’t have to bother with PT.

But then, there was the time I had a bad cold, with a cough that sounded horrible.  I was staying with my parents for a week in between apartment moves.  My mother kept telling me to see a doctor, but I thought that was silly.  It wasn’t until I started to cough up yellow and green phlegm that I finally admitted she might be right.  Unfortunately, by then it was a weekend, which made everything more complicated.  If I’d gone a day before, things would have been much easier.  And of course my mother was right (aren’t they always?)  I had a bronchial infection, which was helped almost immediately by antibiotics.

This week’s problem was with my eyes.  Aside from needing glasses, and not even a very strong prescription, I’ve never had any eye problems.  I see my eye doctor every year for a regular checkup, and also so he can make sure I’m not suffering any negative side effects from the years of Prednisone and Plaquenil use, each of which can cause all sorts of eye-related issues.  Then on Sunday, my eyes started to hurt.  I thought maybe I’d rubbed them too hard when they were itchy.  But they kept hurting.  I never put anything in my eye.  I can’t even watch other people put in contact lenses!  I couldn’t figure it out.  When my eyes still hurt on Monday, I was worried.  They looked normal.  They weren’t red.  But they hurt.  I started thinking about the drugs I’d taken, and I couldn’t remember if this could be a symptom of one of those side effects.  I decided to give it one more day.  I dreamed about my eyes that night and was very stressed out in the morning.  The first thing I did when I woke up was to pay attention to my eyes.  Yep, they still hurt.

Feeling like a huge ass, I called the eye doctor.  I made sure they took my new health insurance.  Then I got an appointment for that afternoon.  I drove over, feeling like I’d be laughed at.  My eyes looked fine.  I seemed ok.  The doctor even remarked on how I didn’t look like I was in pain (he said he can sometimes see the pain in a person’s expressions.)  I pointed out my medical history and my high pain threshold and he immediately understood.  Still, as he checked me in different ways and each was normal, I felt ridiculous.

And then he put something my eye and shone in a light and saw how dry my eyes were.  This level of dryness would have been apparent at my checkup just a few months ago, so this was definitely new.  And it definitely accounted for the pain.  The doctor even said that it’s a known side effect of several of my conditions, especially hypothyroid.  He told me what to do (fish oil, eye drops, set up the humidifier that’s been sitting in a corner, put pots of water next to my radiators, etc.) and sent me on my way.  My eyes felt the same, but my stomach felt a lot better as the anxiety eased.  I felt silly going in, but I was also terrified that there was something seriously wrong.  What a relief!

There’s no way to be sure which problems need to be addressed and which don’t.  It’s all a guessing game, trying to use a biased gut reaction to decide.  Sometimes we’re right and sometimes we’re wrong.  Sometimes we’ll never know.  The night I had diarrhea over and over, each time containing blood?  Maybe I should have been checked out, but an ER on a Saturday night would have been torture.  I’ll never know if I made the right decision (but it did go away on it’s own and hasn’t happened since, so that’s a good sign.)  I guess the best we can do is to make decisions that we feel comfortable with, and about which we won’t have any regrets.  If we can do that, we’re probably ahead of the game.

As for my eyes, I’m just glad I made the right decision to get checked out yesterday.  Now if I could just get the drops in my eyes instead of on my cheeks….


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.


Hormones suck and insurance companies suck more

January 25, 2013

I want to cry.  I am not sad or upset, but I want to cry.   That’s the beauty of having a prescribed hormone yanked away.

When I wrote this post a week ago, I figured the med would be approved eventually, so I’d just have one unpleasant month.  PrescriptionAs it turns out, the insurance company denied it completely.  I’ll need to appeal.  Or try another med.  Never mind that I’ve been on this one for EIGHT YEARS!  Never mind that my DOCTOR prescribed it because he felt it was the best option for me.  Nope, the insurance is deciding this one.

Memory is a funny thing, especially when you have cognitive and memory problems.  I know I’ve been off the med for brief times before, and I remember that it made me emotional, but I didn’t remember it being this particular level of hell.  For the last 24 hours, I’ve been a wreck at times and I’ve felt fine at times.  When I feel fine, I figure the other stuff was a fluke.  Then I’m a wreck again and I know that I need to find another solution.  I can’t just wait to see if my body normalizes over time.  (We tried that once.  It didn’t.)

I’ve been really anxious.  And I’ve been obsessing.  Last week, before the hormone change kicked in, I sent a text to the guy I’m sleeping with.  He didn’t answer right away.  I thought about him occasionally, had some nice sex fantasies, and assumed he was busy and would get back to me later.  Then I moved on and did other things.  Yesterday the hormone stuff started, and it was much earlier than I expected.  I sent him an email yesterday and he didn’t respond right away.  I started wondering if he didn’t like me anymore (even though we sent flirty messages earlier in the day and made a date for next week.)  Then I started thinking he was intentionally ignoring me.  He’s avoiding me.  He’s going to ditch me and that’s why he’s not answering.  He’s sick of dealing with me.

Ok, I know how ridiculous that sounds.  Even while I thought it, I knew it was ridiculous.  And yet, I couldn’t stop thinking it.  And I kept thinking about it.  Even when I tried to do other things, I kept thinking about it.  Every time I had an email or a text message, I wondered if it was him.  That’s not normal.  That’s not me.  I don’t usually obsess like this.  And I’m pretty sure that next week I won’t be obsessing and anxious and weepy.  But right now I am.  Right now I’m crying because I got a call about scheduling an appeal hearing for state medicaid, and I couldn’t thinking clearly enough to make an important decision (because of this mess with the medication,) and I started crying.  Again, that’s not me.

There are a lot of good reasons to stop taking a prescription.  I can think of many.  And they all involve choices being made by the patient and the doctor based on what’s best for the health of the patient.  None of them involve money or insurance companies, and yet that’s how my decision is being made right now.  This is just plain wrong.  I’d like to call the insurance company and tell them that, but when I called before, I started crying.  The irony.

So I’m legitimately angry, pissed off, furious.  That’s my normal response, and I’ll happily embrace it.  As for the rest, I’m hoping it goes away soon, so I can go back to feeling like myself.  I miss me.


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.


The doctor-medication-insurance run-around

January 18, 2013

I have been trying to refill my prescription for more than 3 weeks, and now I won’t have it when I need it, by Tuesday.

I have been on this prescription for a long time, around 7 or 8 years, and it works.  It’s a hormone, and it’s not a life-saving Prescriptiondrug, but it sure does make my life better, especially for several days a month.  For various reasons, I went off of this drug twice in recent years, and each time, I had bad PMS symptoms.  The moodiness was really horrible.  Plus I didn’t get a period.  It’s obvious my body reacts better when I am on this drug.

When I started this drug, my insurance covered it with a $40 copay.  Later, it was covered with a $10 copay.  Now, it may or may not be covered.  They haven’t decided yet.

The process started a few weeks back when I called the pharmacy.  I was out of refills.  They called the doctor.  I called the doctor.  The doctor sent the refill.  Then the insurance company told the pharmacy that they needed prior authorization from the doctor.  The pharmacy then contacted the doctor’s office.  They were closed for the week of Christmas and new year’s.  It’s a small office, just the doctor and one staff member, but I was still annoyed.  Next, the administrative staff member tried to send in the authorization, but there was confusion about the insurance, so she called me.  I had forgotten to tell them about my new insurance.  Oops.  Ok, that was totally my fault.  I scanned a copy of my new insurance card and emailed it to her.  She told me she received it and would take care of everything.  More than a week went by and I didn’t hear from the pharmacy, who was supposed to call.  So I called them.  I assumed everything had gone through and they had just forgotten to send the order.  Nope.  It turns out, the paperwork from the doctor’s office didn’t go through.  They contacted the doctor’s office and the paperwork was sent.  I got a call from the pharmacy that the insurance company was processing it and that it can take up to three days.  Then today I got another call that it might not go through.  I asked how much it would cost out of pocket.  I figured I could pay $30 or $40 if I had to.  It’s $104.  Hmm, not in the budget.  I called the insurance company.  They told me to call the company that handles their prescriptions.  Those folks told me it was still being processed.  Apparently, they need the doctor to explain why he is prescribing this particular drug, instead of having me take something else.  They called his office, and were told to call back on Tuesday.

I need the new prescription by the noon dose on Tuesday.  Let’s say the doctor gets back to the insurance company on Tuesday and actually satisfies their questions.  Let’s say the insurance processes things quickly and sends approval to the pharmacy on Wednesday.  The pharmacy is quick, and could probably send it out on Thursday.  That means I could receive it by UPS on Friday.  3 days too late.  And that’s if they move quickly.  That’s if they even approve it at all.  I won’t take a different drug, not with the kinds of side affects I’ve had in the past.  But then, what choice will I have?

So it looks like 1 month wasn’t enough time to refill this prescription.  And I found the flaw in my supposedly-great health insurance.  It could be a rough month.  As the time approaches, I’ll have to warn my friends about my likely upcoming moodiness.  And that will be around the time I expect to hear about the disability insurance appeal, so I’ll be on edge anyway.

There are many, many ways that the system lets us down, that it seems to put the needs of the patients last, that it makes an already bad situation even worse.  This is just the one I’m dealing with today.  By tomorrow, I’m sure I’ll be dealing with another.


Fun in the sun or sleeplessness and pain?

January 14, 2013

While Australia is battling wildfires and California is dealing with frost, here in New England we’re dealing with our own weather oddity: warmth.  Last week it was in the 30s.  Later this week it should be in the 30s.  Yesterday and today were in the 50s.  And it was sunny.  Go figure.

Aside from all of the concern over climate change, I have another worry: my body doesn’t like severe climate changes.  It especially does not like sudden temperature increases.  And it really doesn’t like more than one day of said increases.

I woke up feeling very hot.  I always sleep better in a cool room, and since it was so warm, I’d gone to sleep with both windows Boston sunshine
wide open and a fan on, but I was still hot.  I looked at the clock: 4:44am.  Yeah, it really said that.  I was not amused.  I got up to turn up the fan and check that the radiator wasn’t running.  While I was up, I got water.  Then back to bed.  No sleep.  I tried reading for a while.  Lights off.  No sleep.  At 5:37 I finally had a good idea.  Just a couple days ago I was cleaning up my living room and feeling frustrated that there was no good place for the box fan that was in a corner of the room.  I stumbled to the living room, noticing the pain in my foot.  Huh, that wasn’t there when I got water, was it?  I haven’t felt that specific type of pain for a while, probably close to a year.  I got the fan, set it in the far window, and went back to bed.  No sleep.  After a while, I switched the fan to the closer window.  Somewhere around 6:15 I finally fell asleep.

It was a miserable hour and a half.  My mind wasn’t racing.  There was nothing mental or emotional to keep me awake.  I just wasn’t responding well to the temperature.  I noticed pain during that time.  A lot of pain.  But that wasn’t keeping me awake either.  I was too tired.  I’m just glad I was able to sleep eventually, and that I didn’t have to get up early.  It wasn’t as much sleep as I usually get, but it was enough to get through the day.

Too bad the first thing I noticed when I got out of bed this morning (at the more appropriate time of 10:30am) was the pain in my foot.  Then later I noticed the pain in my wrist.  And other areas weren’t feeling too good either.  And I was HOT.  I opened all of the windows in my apartment and that helped.  I wore a t-shirt (in January!)  I wore my cooling neck band and that helped more.  But it wasn’t until the temperature began to drop this afternoon that I started to feel better.

Things are continuing to improve, but I’m still dealing with a lot of extra pain.  I’m at Mother Nature’s mercy, and so far, it’s costing me.

So while everyone else is loving this weather, getting outside without heavy coats, throwing balls and frisbees, taking long walks, and getting some sun, I’m counting down the hours until the cooler weather returns, with the glorious 30-something degree days and even colder nights.  For someone who dislikes winter, I’m really anxious for it to return!


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