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.

The incredible amount of time spent on health stuff

April 23, 2013

Phone keypadI’ve been meaning to keep better track of my health stuff. Now, a friend is trying to convince me to write a book about this disability insurance bullshit that I’ve been dealing with. I’d already been thinking about it, but I’m just not sure. Still, in case I do it, I should keep better track of things. So today I started noting the basics. Of course, this doesn’t include the huge amount of time I spent thinking about health-related stuff. And there was a lot more on today’s list that I didn’t get to. No, this is just a short list of a few basic things I did today.

For context, I should have received a decision about my disability insurance appeal two months ago. I figured that would give me plenty of time before the end of April, when I’d have to give notice to my landlord if I was going to move out of my apartment instead of renewing my lease. It was a nice idea, but the insurance company decided not to adhere to the deadline. So now it’s late April, and I was ignoring the letter from my landlord because I just didn’t know yet how to respond. If I move out, it will mean living with my parents.

Health stuff April 23, 2013

11:41 am – Received a call from the landlord’s realtor

11:43 – Spoke to T at landlord’s management office; She offered to either let me decide on the lease renewal by 5/15 or to extend the lease 1 month, which would mean paying another month’s rent but I’d have until the end of May to decide if I’m moving out

12:05 – Left voicemail for lawyer

12:42pm – Called health insurance company to find out about physical therapy benefits; after more than 8 minutes on hold I hung up and ate lunch

1:50pm –  Called health insurance company to find out about physical therapy benefits; found out I need prior authorization for all visits after the intake visit and I can get this from the physical therapist or my doctor

2:23 – Called physical therapy office to make intake appointment but was told doctor order must be faxed over; even though it’s not needed for insurance, they require it themselves

2:26 – Called Dr. K’s office to get physical therapy order; they said they should have it done by tomorrow

Throughout the afternoon – sent over a dozen emails to friends and parents discussing whether I should extend my lease even though I don’t know the disability insurance decision yet

4pm – Called Dr. H (endocrinologist) to get thyroid test results. On phone for almost 8 minutes.

4:10 – Emailed Dr. S (naturopath) with test results from Dr. H

6:57pm – Spent 1 hr 27 min talking to parents about housing; should I extend my lease or move out sooner or do something else? No decision made, but covered everything and will think about it. Lucky to have such supportive parents!


So that was my day. Except for the unusually long phone call at the end, it didn’t feel particularly unusual. I also needed to cancel a followup appointment, call for more test results, and make an appointment. In addition, I needed to resume making phone calls to try and find a new endo who takes my current health insurance. Maybe I’ll get to some of those things tomorrow. That will be in addition to following up on physical therapy and the thyroid test results and of course figuring out my housing issues.

Now, remember that this does not include my physical therapy exercises, time spent taking and tracking pills, rest, sleep, extra cooking time, research, or any of the other things I do for my health.

I am not writing this to complain. I am writing this to educate. People ask what I do with my days since I’m not working. Well, I may not be getting paid, but I sure as hell am working! Taking care of my health is more than a full time job, and I challenge anyone to try and disagree with me.

Ok, time to go research a new-to-me thyroid drug.

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.

Remembering that my body has “normal” problems too

April 18, 2013

I have a high pain tolerance. I guess it’s necessary when you live with chronic pain. That’s probably why I barely noticed yesterday when my knee hurt and I found myself limping a bit. And yet, ripping the tape off my arm after a blood test today was terrible. I hate doing that! Sometimes it’s those little, everyday things that make me pause and remember that despite all of my illnesses, I still have a non-ill body too. And yesterday was a great reminder of that.

After a long break, I had a sex date yesterday. I wrote before about my sexual relationship with D. We’re friends, too, so we’d been texting and emailing, but due to personal problems on his end, we stopped sleeping together for a bit. After more than two months, we were finally going to see each other again! I was so excited. I picked out what to wear. I thought about fun ways to greet him. I indulged in lovely fantasies. (By the way, that’s a great way to pass the time when you have no job to go to.) I considered my health. I made sure to get lots of sleep. My pain levels were ok, and so was the fatigue. The long-lasting cold (thanks to my malfunctioning immune system) was finally over. I was ready! The big date day finally arrived…. and so did my period!

When you’re dealing with unpredictable chronic illnesses, there are so many things that can go wrong. I’m constantly on the lookout for those. Sometimes they affect my plans and sometimes they don’t, but I always try to be prepared. It just never occurred to me to prepare for anything so mundane as my period, something that could affect even “healthy” women.

In the end I was lucky. D isn’t squirmish and told me to do whatever I felt comfortable with. Thankfully, due to the hormones I take for PCOS, my period is very light (though not entirely predictable.) It dampened my libido a bit, but not enough to ruin things. We had a great time and, aside from some sleep deprivation, I feel great.

Now I need to remember the lesson I just learned: even sick people can have non-sick problems. Strange but true.

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