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 I 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.

2 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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.

5 Comments | Expectations, Fatigue, Gastrointestinal, Healthcare, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

More empty days

April 25, 2013

It was in the lower 60s and the sun was shining. To me, that’s perfect weather. I’m sensitive to warmer temperatures so 60s is perfect, and I have seasonal affective disorder so I get much happier when the sun is out. My problems is simply that I had no reason to be out in the gorgeous weather.

Almost everyone I know has a full time 9-5 kind of job. They work during the day. I do not. Sometimes I have medical appointments or I run errands, but it’s rare that I do anything social on weekdays while everyone else is at work. Sometimes I try to make plans for weekday evenings, but that’s hard. It’s hard to find people who are available after a long day of work, and it’s even harder to predict how I’ll be feeling in the evenings. Daytime is definitely better for me in terms of energy.

This is one of those weeks of nothing. And looking at my calendar, I have many more of those coming up. It’s not like I don’t have anything to do during the day. I have social security forms to fill out, medical appointments to make, lab results to review, books to read, Facebook statuses to check, an apartment to clean up, and the typical errands and chores such as laundry, grocery shopping, cooking, and washing dishes. That’s all well and good, but it means that I spend most of my days alone and indoors. That’s no good.

I’ve identified the problem. I’m just not sure how to fix it. Ideas are welcome.

2 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Rants | Permalink
Posted by chronicrants

Elusively trying to measure energy

April 22, 2013

The question seemed simple to her: “How is your energy compared to how it was around the time of your last visit?”

Well first, you’re asking someone with memory problems to remember how she felt a month ago. Then you’re asking her a Fatigue Scalevery subjective question. Try again.

“How is your energy on a scale of 0 to 10?”

That seems better, but it feels even more subjective. I did a lot this weekend. I did more than I had in a long time. And at the end of the weekend I was completely worn out. I was too exhausted to cook dinner last night. I had to sit and rest for close to an hour before I could even get out of my chair to heat up food from the freezer. Still, I was excited at how much I did.

Well, I was excited until I realized how much more everyone else did. Take the brunch. I was a bit late, but still one of the first to arrive. I didn’t have the energy to cook, so I brought chips and salsa. It was such a lovely day and we were near a great park, so afterwards I went for a walk with a friend who was at the brunch, K. It was a short walk, but it was great to get outside. That was all I could manage, though. I went home and collapsed. K, on the other hand, had been out before the brunch. She had gone downtown and visited the memorial at the site of the bombings. She lived farther away and it took her longer to get there. Then, after the brunch and our walk, she met up with a friend for dinner. Huh, I guess people can do that. The host had to get the apartment set up. She prepared everything. She cooked. She entertained. Then after all of that she walked out with us and headed to a meeting for a volunteer group she’s in. Huh, I guess people can do that too.

So how can I possibly measure how I feel? I did so much, yet it was so much less than everyone else seems to do. Still, I tried to be as objective as possible and rated my energy at a 5. Then my doc read back my last visit’s report, from just one month ago: I’d rated it 6 out of 10. I’m sure I don’t feel worse than I did then. I’m certain it’s just my perspective. So now the question is, was I too high last time or too low this time? Or am I really getting worse after all?

I just don’t know. I don’t know. I wish I knew but I don’t. I think I’m getting better but it’s so hard to tell. And there are just so many problems holding me back. I need to find a new doctor to work on my thyroid. I need to get this insurance issue settled so my stress will be reduced. I need to keep adjusting my diet. All of these things are holding back my progress. I just wish I knew if they were holding it back entirely or if I really am moving forward.

I really hope I’m moving forward.

6 Comments | Expectations, Fatigue, Frustration, Healthcare, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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