Celebrating a less-bad lab result

January 10, 2013

I just got a test result back and it was only a bit over 10 times higher than it should be!  Yay!

My guess is that most “healthy” people don’t understand why this is cause for celebration.  From my interactions, it seems that their world consists of healthy or not healthy and nothing in between.  But for those of us with chronic illnesses, there’s a huge spectrum, and I’m thrilled to be moving along mine in the right direction.

I got diagnosed with an autoimmune condition at age 23.  My hypothyroid diagnosis came at age 25.  After a lot of research, now I know that many hypothyroid cases are autoimmune and people should be tested for that, but that someone with a history of autoimmune disease should definitely be for Hashimoto’s Disease, which is an autoimmune thyroid condition.  Unfortunately, I only did this research in the last year, and none of my doctors thought to test me for thyroid antibodies until I was 31.  Yep, it took six years for anyone to think of testing me for something that was incredibly likely.  That’s just another in the long list of errors made by my doctors.

Anyway, the point is that they did finally run the test.  On a “normal” scale of 0-35, my score was over 400.  Not good.  The next year it was over 600.  Even worse.  My doctor told me that the only treatment was the pill that I was currently taking, but through my own research I determined that wasn’t the case.  I went on a gluten-free diet.  I started seeing a naturopath.  I made more dietary changes.  I began taking supplements.  I did whatever I felt was right to fix my body.

For a long time, none of my doctors tested my thyroid antibody levels.  Why bother, when there was nothing they could do anyway?  But at my (and my naturopath’s) request, a doctor ran the test last month.  I got the results this week: on a scale of 0-35 my level was 375!  Wow!

The real question is, what does this number really mean?  After all, it’s just a number, just a lab test.  This doesn’t change how I feel.  I feel the same today as I did last week, before getting the result.  But now I know that the hard work, the experimenting, the huge expenses, are all worth it.  Because of all of that, I’m heading in the right direction.  I knew this, of course, because I was feeling better, but there was the nagging worry that maybe my feeling better was the result of a placebo affect, or maybe it was only a random, temporary blip that wouldn’t last much longer.  Of course, these things could still be true, but now it also looks like I’m getting better.  I may never get those antibodies into the “normal” range, but the closer they are, the better I should be feeling.

So for only having my thyroid antibodies at a ridiculously high level, instead of a super ridiculously high level, I’m CELEBRATING!!!

2 Comments | Educating, Expectations, Healthcare, Milestones, Raves | Permalink
Posted by chronicrants

Daring to dream

January 8, 2013

I’ve come up with yet another career plan.  I’ve made so many plans in the last few years.  This one seems as plausible as any… if I go back to work someday.  As my health got worse in recent years, it seemed more and more important to have alternative plans because I knew I couldn’t keep working the way I was.  Then when my health got really bad, I felt too lousy to bother trying to figure out a plan.  And now I’m back to planning.

Dreaming

The specific plans don’t matter.  They generally involve consulting in different fields where I have knowledge, part time work in areas that would provide benefits, and jobs in fields that I always found interesting but that won’t take too much extra training.  And they all have something in common: they require me to be in better health before I can attempt any of them.

My naturopath told me yesterday that she thinks it’s a good sign that I’m so antsy to prepare for the future.  I know she’s right.  I’ve been thinking the same thing lately.  When I felt so horrible that reading a chapter in a book was a chore, of course I wasn’t thinking about returning to work.  But now that I’m feeling somewhat better, I’m anxious to feel completely better so I can do more!  It’s a strange in between zone, where my brain is jumping ahead and my body isn’t ready to follow.

Of course, this isn’t just about jobs, but I think that jobs are the easiest thing to focus on.  My friendships are awesome, so there’s no need to work on those.  My family is great, except for the sibling I don’t get along with, so there’s nothing to work on there.  I want a relationship, but that means dating, and more than that, it means being open to being vulnerable.  While my health is stopping me from dating, it’s my past experiences that’s stopping me from being vulnerable.  I’ve been hurt so many times, and I’m not ready to go through that again.  Now that I’m having sex again, I don’t mind waiting to date.  I really want to be able to do more in a day, like get a haircut and see friends and do laundry all in the same day.  I dream about that a bit, but the idea of “more” is so nebulous, and so hard to imagine, that I don’t dwell on it much.  I worked at a job as recently as late 2011, but doing “more” without feeling horrible was a long time ago and it’s harder to remember.  So I think about jobs, careers, possibilities.

And obviously there’s the money part.  I don’t know where I’ll be living in a few months, and it all depends on the insurance appeal decision.  I haven’t been buying new clothes, even new winter socks without holes, because of the money.  I fantasize about being able to buy new slippers without worrying about the money.  So earning an income would be fantastic.

The cognitive aspect is important too.  I miss using my brain.  Of course, I’m still having cognitive problems…. it took me a long time to think of the word “cognitive” as I was starting this paragraph, actually.  But if I can work, then I can use my brain more and give it exercise, and if I’m working then it means that I’m able to use my brain, and how fantastic would that be?

I know that returning to work, to the “normal” world, to the world where I don’t dread the question “what do you do?” is pretty far off.  It could be months, it could be years.  It may never happen.  But right now I’m dreaming.  I’m making plans.  Because if it does happen, I want to be ready.

Leave a Comment » | Expectations, Frustration, Isolation, Job, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

When it’s worth the extra pain

January 3, 2013

“Just what kind of sex are you having?”

Unfortunately, sex is a pretty rare occurrence for me.  But last week an ex texted me, and one thing led to another, and yay!  Later I was telling a friend about how sore I was, and not in the more expected areas.  My arms and legs felt like rubber.  My 1-3-2013 10-59-48 AMabs were a wreck.  Standing up and sitting down hurt every time.  She didn’t understand it, and assumed I was having crazy, kinky sex, but how could I possibly explain it? I haven’t been using those muscles much at all lately, so even trying to support my own body weight, for example, was just too much for my tired, unused body.  Sure, I like to be a bit kinky sometimes, like I said last month, but that’s not what this was.  This was just me pushing myself too hard.

And I knew it would hurt.

That’s the key.  Ok, I didn’t know how or where or for how long it would hurt, but I knew it would hurt.  And I decided in advance that it was worth it.  I was careful not to do anything that would lead to more long-term or high-intensity pain, like leaning on my hand in any way, but I was perfectly willing to accept short term pain, like leaning on my forearm.

I made the same kind of decision recently when I visited with a friend who just had a baby.  There’s something so great about holding a newborn.  They are so peaceful (when they’re not crying, that is.)  They have an inner peace that adults just do not have.  They are simple and content and relaxed.  So that’s why I kept holding her even when I was starting to hurt.  And I continued to hold her even as I hurt more.  It wasn’t until the pain got pretty bad, after about 15 minutes of holding this little 7.5 pound darling, that I finally had to give her back to her parents.  I hated to give her up, but I knew that I was about to cross over from short-term to long-term pain, and I didn’t want to go that far.  Still, one week later, I held her again.  And again, I continued to hold her even as the pain got worse.  And it was worth every second.

Pain is our body’s way of saying DON’T DO THAT!  It’s usually a good idea to respect the pain.  And I think that for the most part we’re all good about listening to our bodies when there’s pain.  But for those of us with chronic pain, who experience pain every single day of our lives, there’s no such thing as avoiding pain completely.  And sure, it sounds like a good idea to minimize pain as much as possible, but that would mean missing out on so much in life.  We have the advantage of knowing our bodies better than most, of knowing what will cause and worsen our pain, so occasionally we’re able to make choices (if we’re lucky) of whether or not to do those things.

For everyone else I know, sex and holding babies are fun things and that’s all.  For me, they’re big choices about how willing I am to be in pain for several days afterwards.  It may not be worth it to me to take a walk in 16 degree weather today, especially with ice on the sidewalks and knees that already sore, but I’m looking forward to having sex again tonight, and I’ll be holding that little baby again the next chance I get.  Those are my choices, and I am very happy with them.

2 Comments | Educating, Expectations, Limitations, Raves, Relationships: Family & Friends & Dating & Sex, Symptoms | Permalink
Posted by chronicrants

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