A gluten-free dairy-free whoopie pie kind of day

December 13, 2012

I don’t believe in emotional eating, but that doesn’t mean that I don’t do it.

This is a difficult time.  My insurance appeal has been submitted and a response is due back within the next two and a half weeks.  The response could be that they need an extension, but it could also be a yay or nay on the whole thing.  My social security appeal is floating around out there somewhere, with no response deadline on it that I know of.  And worst of all, a close relative is dying a slow, painful, excruciating death, and there is nothing we can do about it.

WhoopiePie

I think that I handle stress fairly well.  I used to be rotten at dealing with stress, and when the doctor who diagnosed me with auto-immune illnesses told me to cut down my stress levels, I laughed.  I thought he was kidding.  Doesn’t everyone want to reduce their stress?  Does he really think it’s so easy?  But over the years I’ve learned that I absolutely must keep my stress down if I want to avoid flares and other problems, and I’ve done that pretty well.  Unfortunately, there are some stresses in life that just can’t be avoided.

I’ve been watching this relative die slowly over the past year.  A year ago it was bad.  Now it’s beyond words.  Even though it’s hard when she doesn’t recognize me, it’s worse when she’s lucid; it’s worse when she’s aware of how bad it is.  In her lucid moments, she has made it clear that she’s done, she wants to die now.  She’s past 90, with a terminal illness and no hope for recovery.  Her life-prolonging meds have been stopped.  Unfortunately, Massachusetts does not have a right-to-die law (and the ballot question for it narrowly failed last month) so there will be no peaceful end.  Instead, she is growing weaker and weaker.  Breathing is hard.  She has 24/7 care, but now that is not enough.  One person is no longer enough to get her to the bathroom, for example.  Before, one person could help her stand up, and she could balance while holding on to something while they pulled her pants down.  Now, she is not strong enough for that, and instead she must relieve herself in an adult diaper.  What way is this to end the life of a woman who was strong, independent, vivacious, and wise?

As I read the email with the latest updates today, I desperately wanted something sweet.  Normally I try to avoid emotional eating, but I let myself do it in extreme circumstances.  This is definitely extreme.  I haven’t bothered learning gluten-free baking yet, so there was nothing in my house.  I’d heard there were gluten-free bakeries in a town near me, so I went online and looked around, then I made a few phone calls to confirm.  I ended up at a bakery only 1/2 mile from another errand I was running.  I wound up with 2 gluten-free, dairy-free mini whoopie pies.  They are not the best I’ve ever had.  I had a gluten-free, dairy-free whoopie pie a couple of months ago that was much better, but that was in another state.  Still, the fat and sugar triggered those parts of my brain that made me feel a bit better.  They don’t fix things, but they sure do help.  I devoured 1/2 of the first whoopie pie while I sat in the car, then took my time eating more of it later.  Since I don’t eat sweets anymore, a little bit goes a long way.  Hopefully these will last a few days, because I don’t see my life getting any less stressful in the near future, especially as the family starts funeral preparations.

Sometimes life stucks.  Sometimes life is stressful.  Sometimes it all feels wrong.  For those times, thank goodness for whoopie pie.


Limbo sucks

December 10, 2012

I hate being in limbo.  I’m not talking about the game with the broom handle.  I’m not talking about religious limbo.  I’m talking about being stuck in life, with no control over the outcome of a situation or of when the outcome will even arrive.

There are small kinds of limbo, where I’m just being indecisive.  Should I cancel my plans for tonight?  I hem and haw and Limbocan’t decide, and then I get this email from a friend:

“I saw on Twitter that you’re in rough shape. Do you want to cancel/reschedule tonight?”

She sent that today.  Totally awesome.  That’s someone who gets it.  But I digress.

Right now I’m talking about the big kinds of limbo.  I like to plan.  We never know what will happen in life, but we can figure out different ways to handle possible situations, right?  So if I quit my job and it takes too long to get a new one, I can do temp work, or do consulting, or get a lower-paying job to handle it.  That was a situation I planned for several years ago.  I didn’t entirely have control over when I’d get the “right” job, but I had control over my responses to the situation.  Besides, I wasn’t totally without control – I knew that I could always take a lower-paying job if I needed to.  That was reassuring.

My current limbo is much more sucky.  I’m waiting for a decision on this damn insurance appeal, and until then I can’t do anything.  I can only make basic plans: if I lose, I’ll move in with my parents and if I win I’ll look for a cheaper place to live.  But I can’t apartment hunt yet.  I can’t start packing.  I don’t know if I’ll be able to afford to finish out my current lease.  I don’t know if I can afford to buy clothes or to go out with friends.  I don’t think my health is good enough to do part-time work or take a class yet, but even if it were, I’d worry about that messing up the appeal.  I can’t plan for a future career, because I have no idea when or if I’ll ever be able to work again.

Six months from now I’ll probably be living someplace else, but I can’t plan for it.  My health could be very different, but I can’t plan for it.  My financial situation will have been determined for the immediate future, but I can’t plan for it.

I’m stuck.  I’m sitting in limbo waiting for some unknown stranger to decide the direction my life will take.  And it sucks.


“A great doc, but you didn’t hear it from me”

December 6, 2012

Our medical system is seriously fucked up.  I’m sure this isn’t news to you (and if it is, you can start learning about it here and here.)  Now, I know that some parts of it work well.  I used my new health insurance for the first time today, and that was great.  But in so many other ways, it just doesn’t make any sense at all.

What do you think is the point of healthcare?  Personally, I think it is to maintain good health, and to achieve improved health when needed.  Unfortunately, healthcare here is a business, so to the people in control, it’s about making money.

I saw my rheumatologist today, and of course at one point we talked about how I need a new endocrinologist since my old one dumped me.  He didn’t like that I require so many expensive tests, so much effort, and so much insurance-related paperwork.  I asked my rheumatologist for her advice.  She confided in me that there were a few in her hospital system that I should stay away from, and she asked me not to tell anyone that she’d said that.  Ok, I get that.  She shouldn’t bad-mouth colleagues.  No problem.  I would never say a word.  No one should bad-mouth a colleague – it’s bad etiquette – but when it’s a matter of someone’s health, it’s worth it.  All good, right?

But then she considered things, and finally told me about a center at another hospital that specializes in thyroid work, which is what I need.  She said multiple times “but you didn’t hear it from me,” and I assured her that I would never let on.  If I thought that writing this would in any way haunt her, I’d never write a word of it.  The last thing I want is to hurt someone who has fought on my behalf many times, helped me immensely, and gone above and beyond.

So here’s why I’m upset: why should a doctor get in trouble for telling a patient about a treatment center that could help them?!?  Think about that.  She would get in trouble because she suggested that I go to a different hospital.  She is not telling me that her hospital sucks.  She is not telling me to leave her practice.  She is not treating me badly. On the contrary, her primary concern is my health, and for that reason she is suggesting that I see the practitioners who are most likely to help me improve my health.  Once again, her focus is on my health!

And that’s why our system is completely fucked up.  Because a doctor can get in trouble for helping a patient improve their health, if it means sending the patient (and therefore the patient’s money) to another center.  Wrong wrong wrong.

So while we’re at it, PLEASE let me know if you can recommend a good endocrinologist in the Boston area.  I will consider my rheumatologist’s suggestion, but I don’t know yet if that place will offer what I need, or if they’re taking new patients.  Please send any and all suggestions.  I need someone who does thyroid work, especially Hashimoto’s.  Thanks!


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!