I simply forget to complain

May 5, 2013

The other night was a really really bad night. It was one of those nights. You know the ones. They feel endless. Time stops. Nothing helps, yet you know that somehow it will get better.

For me, it was a triple whammy. First, I was dealing with nausea and diarrhea. As I have mentioned in many posts before, I finally found a diet that seems to have healed my leaky gut and I almost never have these symptoms anymore. It’s been truly life-changing! So I don’t know where these came from. Second, I was having trouble breathing. This had been a problem all day, but when I tried to lie down to go to sleep, it got worse. Maybe this had to do with the new med? Finally, I wasn’t at home, I was at my parents’ house. This meant I couldn’t just pop in my go-to feeling-like-crap movie to distract me. It was a very very bad time.

After 2 hours of laying down, then sitting up to help my breathing, then laying down, then moving to the couch to try to sleep while sitting up, then going back to bed, all while sucking on Pepto tablets, I did finally manage to get some sleep. I slept fitfully, though, waking up often, and around 7am I finally gave up altogether.

The next day, I acted like it was a normal day, even though I felt like shit. I didn’t mention anything until late in the afternoon when my father asked how I was. He had been awake when I was roaming the house, trying to get comfortable on the couch. I hadn’t said a word to him that night, so he knew something was wrong. Plus, I don’t usually sit alone in a dark room for over an hour. I gave him a basic summary.  I didn’t think much of it, until I noticed my brother-in-law was paying attention to what I said. And then I wondered how it sounded to him, since I’ve never really spoken to him about any of my symptoms, and I hadn’t mentioned anything that day. No one else knew I had been ill the night before. I wasn’t trying to hide it, I just didn’t think to mention it. What was the point? It was over, and I was on the mend.

That night I was on Facebook, reading posts in the many thyroid-related and pain-related groups that I belong to, and I noticed multiple people commenting on the friends who get tired of listening to them talk about their illnesses. It made me wonder, not for the first time, what it is that people say.

Now, it’s not that I don’t speak about my illnesses or my symptoms at all. Of course I do. I suppose there are a few differences for me compared to what I read. I just have no idea what the reality actually is for others. For me, though:

  1. I don’t talk about it every day.
  2. Mostly I only speak about it when it effects plans with a friend, etc. I’ll say I have to cancel plans because I don’t feel well, or that I need to change things to be more sedentary because the fatigue is bad. But I rarely bring it up out of context.
  3. Except for the worst times, I intentionally try to balance things. When I hear myself talking about my health stuff a lot to someone, I make a point of then asking about their lives, and focusing on what’s going on with them. (I learned this lesson the hard way from a friend many years ago. But I did learn from it, which is why she’s still in my life and is reading this on Monday morning at work while she sips her coffee, I bet. *waves*)
  4. My symptoms came on gradually over many years. It’s not as if I had a particular life and then I woke up one day and everything had changed. Instead, the illnesses slowly eroded my life, so the changes were less startling, and therefore weren’t “news” the way they are when there’s a sudden onset of symptoms.

Do I complain? Of course. Do I whine? Occasionally. But mostly, I forget to bring it up. This crap is such a huge part of my life, that it almost feels normal. It’s sad but true. So I forget to talk about it most of the time. And that’s why I can’t imagine what it is that others say about it every day. I’m just curious. What is it you discuss with your friends and family regarding your illness(es)?

And for the times when I really just need to bitch about the unfairness of it all, well, this blog is great for that!


In my mind I’m different

May 5, 2013

Boston has been having a string of unusually beautiful weather. Don’t get me wrong, I really do love Boston. But usually our weather sucks. I especially dislike summer, since my body is so sensitive to heat and humidity. That’s why this extended Sunny Dayperiod of temperatures in the 60s with lots of sunshine and low humidity has been so wonderful. Even want to be outside!

But just because I want to be outside, doesn’t mean it’ll actually happen.

I wanted to join some friends for a potluck brunch today. The usual driving route is a mess because of outdoor festivals, so I figured I’d take the T. It’s a bit out of the way to take the subway, but what nice weather for walking! I planned out how to pack up the food. I figured I’d bring both a book to read on the train and also my current crochet project, so I’d have options. I emailed a friend about going together. It was all planned out.

And then I woke up and realized I was in no condition to get out of bed. After more than an hour I got up, but only because my hunger beat out my exhaustion in my body’s debate for which negative feeling to try to resolve. If I lived with someone who could have brought me food, I’d probably still be in bed.

The sun is shining, the trees are blooming, and I’m at my computer. I’ve barely moved all day. While I was reading, though, my mind started to wander. I thought about how lovely it would be to ride a bike. I thought about taking a long walk, for hours, walking miles around these lovely old neighborhoods like so many of my friends do. I thought about how nice it would be to get rid of my car and just walk and bike everyplace.

And then I came back to reality. My body aches. My exhaustion is deep. I haven’t ridden a bike in over 17 years, and for good reason, reason that still exists and which has been joined by even more reasons. Walking 1 mile today is out of the question, and walking 3 miles on even my best day isn’t doable at all. I think about who I am and it just doesn’t match what I can do.

I won’t pretend I was ever athletic. I was never someone who played intense sports and was active all the time. I always watched a lot of tv and did a lot of reading. I don’t think my illnesses changed that. But I also believe that right now, if I got my health back, I would be more active. I would ditch the car and buy a bike. I would walk as much as possible. I would throw a frisbee in the park. And I would have joined my friends for brunch.

Too bad I’m not able to be the person I feel I am.


What if it doesn’t work?

April 29, 2013

Sometimes I think managing my healthcare is more of an art than a science. That’s how my T3 process feels at the moment.

Two years ago I thought my thyroid problem was just an inconvenience solved by taking a daily pill. Since then, through a huge amount of reading, I’ve come to realize that it might actually be the main cause of most of my problems. Or maybe not. But it could be. So it would be crazy not to try and treat it.

Through this same reading, I realized that the medication I’ve been on for the last 8 years (synthetic T4) may not be adequate. Well whaddayaknow! A lot of people seem to have luck on natural dessicated thyroid (NDT) – that’s part of a thyroid taken from a pig or a cow. They produce the same hormones as healthy humans and in the same proportions. Unfortunately, it’s hard to find a doctor who’s covered by insurance to prescribe it. Most endocrinologists believe in strictly T4 treatments. I have finally found someone who’s covered by my old insurance, so if the disability insurance ruling goes in my favor and I get my old health insurance back, then I’ll head there. But until then, I haven’t found anyone who takes my current insurance. And I don’t really have the funds to pay cash.

So I started to think about the alternative. After months of searching, I considered the benefits of trying a synthetic thyroid med. Many patients report a big improvement on synthetic T3 and then a further improvement on NDT. So why not try T3? It wouldn’t be a complete solution, but at least it could be a partial one. Sounds good, right? Well, first I need the prescription. So I made an appointment with the endocrinologist who has been insisting that T4 is the way to go (as most endos seem to believe.) Before the appointment I asked him to send me a lab form so I could have tests done in advance. Sure enough, the two T3 tests weren’t on there. Hmm…. At the appointment I oh-so-casually mentioned that those tests hadn’t been done in a while, at least a few years. He said he didn’t think it was necessary. I pointed out that I’d be on the same meds for a long time, and maybe we should check just to be sure. He said why not, we could do it at my next appointment. My first thought was, I’m not waiting another 4 months! So I casually said that I didn’t mind having more blood taken. In fact, I joked, I have so much blood taken, I hardly notice anymore! So he said sure, and ordered the tests. Yippee!

Sure enough, one test came back in the range that the lab calls normal, and that my endo calls normal, but that my naturopath and the online patient community think is too low. But the other test, well, that was definitely too high! (They’re inverse tests, so it makes sense that one is high and the other is low.) Bingo! My endo debated with himself while I listened through the phone and nudged him gently. He decided that we should try the lowest possible dose of synthetic T3. If there are no side effects, then we can consider raising the dose. If it works, then I know I’ll have more evidence that NDT could really help me.

On my way home from the pharmacy today, T3 safely in my purse, proud of this small and yet not-so-small accomplishment, I started thinking about what could happen. I’m a bit worried that it could make me “too well” before my big IME appointment. The disability insurance company wants me to be examined by an independent medical examiner (IME) to make sure I’m really unable to work. What if this med makes me feel better and then the doctor rules against me?

And then it hit me: What if it doesn’t?

For some reason, I hadn’t really considered that before. I’ve just been assuming this would help me. I didn’t pursue it sooner because my adrenals were in such a sad state, we had to focus on healing them a bit before trying any thyroid treatments, but all along I knew I’d try it one day and I assumed it would help. Many have us have had a magic-type cure in mind at one point or another. But the scary thing is, if this doesn’t work, then what? I could still try NDT. But if that doesn’t work? Then I have no idea what to try next. I have no idea what else could be causing my problems. And then maybe I could be this sick for the rest of my life.

It’s a scary thought. It’s not impossible. It took me many years to find this avenue to pursue. If need be, I’ll start the research over again and find a new avenue. I know that’s what would happen. But still, right now, knowing that I’ll be starting that new med in the morning, I’m really worried that I could be wrong. That this med I’ve been holding out hope for for so long won’t be my salvation. That maybe it won’t work.


Forget the cloak: become invisible in a handicapped parking space

April 27, 2013

I’ve found there are two reactions from strangers when I park in a handicapped parking spot. It’s either condemnation or obliviousness.

I covered condemnation in yesterday’s post. I experienced obliviousness today.

Do you ever watch how people search for parking spaces? It doesn’t matter if someone plans to walk a mile around and around Handicapped Parkingthe inside of a mall; it’s so very important to them that they don’t walk an extra 50 feet to a farther parking spot. It’s a priority to park as close to the building’s door as possible. It doesn’t matter to them how much time, effort, and gas they waste. They need the “best” possible parking spot. They see it as an accomplishment.

Now, if you happen to be in one of those close-to-the-building parking spaces, drivers will be very happy to wait while you load your packages into the trunk, buckle your kids into their car seats, check your email on the phone, and generally take several extra minutes to pull out of that spot. Because it means they get the spot when you leave. So they wait while traffic backs up behind them.

All of that is different if you park in a handicapped parking space. They can’t park in your spot, so they don’t bother looking in your direction. They just drive right past. I’ve found that waiting patiently doesn’t help with this situation. I’ve tried to back out slowly, but that’s tough too, because the determined drivers will just swing around my car and continue down the aisle. They can’t use my parking space so they have no incentive to let me out. I’ve found that it takes much longer to get out of a handicapped parking space than a non-handicapped one that’s just as close or even one that’s farther away. And it’s infuriating.

I know this problem isn’t about their view of me needing the parking space. It’s about people being selfish, impatient, and rude. Still, it’s just one more added difficulty in an already difficult situation. And I’m fed up with it.