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.

You know what happens when you assume

April 26, 2013

She called me up in tears. She wanted to talk specifically to me, because she knew I’d understand. Now that I’m remembering it, I’m just so angry!

Amy was having a bad day. She was worried about her sick elderly father. She was just told about a potentially career-altering problem at work. She’s still helping out her husband while he recovers from surgery and can’t do as much around the house as usual. She was in a lot of pain, even more than usual. And to top it all off, she’d just gotten bad news from her doctor. It was a bad bad bad bad day.

On the way home from taking care of her father, Amy stopped to pick up take-out food for her and her husband. She couldn’t Handicapped Parkingmanage to cook. She was exhausted and in pain and didn’t think anything of pulling into one of the handicapped spaces. Like me, some days she doesn’t bother with those spaces. It just depends on how she feels. But just about every day, like me, she looks healthy even though she’s not.

Food in hand, Amy returned to her car to find a hand-written note on her windshield. Someone had written that she didn’t look handicapped so she shouldn’t be parking in that space. And like any one of us who have gotten a similar note, dirty looks, or hurtful words thrown at us, she was angry, upset, hurt, and felt the need to defend herself. Of course, the writer of the note was no where around, so all she could do was go home and cry.

I am glad she called me, because I do understand. And at the end of the call, she seemed to be feeling a bit better. I suggested some self-care: a shoulder rub from her husband, good food, a relaxing movie, and lots of sleep. I told her to call me back if she needed to cry or yell, and to throw or punch a pillow. She apologized because she never complains, but I pointed out that she can’t just keep this bottled up.

And neither can I.

Everyone with an invisible disability experiences something like this at some point in their lives. I’m sorry, but it’s true. I have experienced it more times than I want to think about, but still fewer times than I’d expect. Over the years, though, I’m sure I’ll experience it more.

I applaud those who call out people who truly are fraudulent. I often report cars without proper tags that are parked in handicapped spaces. But none of us has any right to judge others for their perceived abilities or lack thereof. No, I do not look like I need to park in handicapped spaces, but I do. No, I do not seem to need a wheelchair, but some times I do. No I do not look like I’m unable to stand on the bus or train, but I am. No, I do not look like I am unable to work, but I am. That is my reality. It’s no one else’s.

And it’s no one else’s to judge.

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.

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