Taking pills 10 times a day, literally

May 17, 2013

I wrote once about how much time I spend on health stuff. I wrote about lawyers and insurance and doctors… those are the things that you’d expect to be both time consuming and mentally consuming. As I was trying to work out a new pill schedule the other day, it occurred to me that most people probably have no idea just how time consuming, not to mention mentally consuming, it can be to take pills!

A “healthy” person might not take any pills. Or they swallow an occasional multivitamin or birth control pill. I’ve been trying to remember when I last had a day without pills and my guess is that it was probably around 1996 or so. Then for years my pills were simple: a birth control pill, then a BCP and a thyroid pill, then a BCP and the thyroid one and a multivitamin…. and then it got worse.

I miss the days of simply taking a pill or two with meals. Now, everything has to be timed out so carefully. There are the pills that must be taken with food. There are the pills that must be taken away from food. There are pills that must be taken away from each other. There are pills that need to be taken at specific times of day.

Oh, and when I say “pills,” that includes liquid meds as well.

It’s taken a lot of mental energy and help from my naturopath, but I finally have a working schedule (until the next addition or subtraction, that is):

  • 8am: thyroid pill – 1 pill
  • 8:30: adrenal support, dhea – 5 pills
  • after breakfast: a whole bunch – 9 pills and 8 sets of drops, and a cream
  • 2 hours after breakfast: fiber – 2 pills
  • after lunch: another bunch – 5 pills and 7 sets of drops
  • 2pm: adrenal support, dhea, calcium – 4 pills
  • 4pm: fiber – 2 pills
  • before dinner: calcium – 1 pill
  • after dinner: another bunch – 7 pills and 8 sets of drops
  • 9pm: bedtime stuff – 4 pills

Wow, this looks even worse written out than it did in my head. Actually, the original title for this post had “9 times a day” written, because that’s how I’d counted it. Then as I wrote it out, I realized I’d missed one. It’s a lot to keep track of. The thyroid pill has to be an hour before meals. The adrenal support has to be 15 minutes before eating and at specific times of day. The fiber has to be 2 hours after and 1/2 hour before eating. Some of the mealtime pills are taken then because they have to be taken with food. The multivitamin has extra iron, and the iron and calcium have to be taken at least 1/2 hour apart. In fact, I should be taking calcium 3 times per day but I’m only taking it 2 times per day because I can’t figure out where else to squeeze it in! The drops don’t have to be taken at specific times, but they’re hard to carry around, so I need to take them at home. That means that sometimes I only take them 2 times per day, but that’s ok, as long as I at least take the drops for vitamin D. Some of the pills, though, can’t be missed. Like, they really, seriously, can’t be missed. Like, if it’s really late and I don’t want to deal with driving and so my parents say I can just stay the night, I can’t. Because I have to get home. I have to get home to where the pills are. Because I really can’t skip those morning pills, or even take them late. Some don’t seem too important, but they are. I tried cutting the fiber back to 2 times per day instead of 3 and the effects were horrendous. I’m not about to try that again any time soon!

So you may be wondering what my point is? I have three points:

  1. For those who are in a similar situation, you’re not alone. I get it. Lots of us get it.
  2. For those who complain when they have to take a single pill for a cold, or even for something daily, tell it to someone else. I don’t want to listen.
  3. If you think that by not working I just sit around all day and have fun, and you haven’t figured out yet that that’s not how it works, just imagine trying to keep track of all of this. Imagine how long it takes me to fill my pill boxes each week. And since the drops can’t be prepared in batch in advance, I have to deal with those three times, every single day. Trust me, it would be easier to work a job.

And on that note, I’m off to get some sleep. I hope. Because there’s no more sleeping in for me – I have to be up early to take those pills!

4 Comments | Educating, Frustration, Healthcare, Medication, Rants, Symptoms | 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

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.

2 Comments | Educating, Expectations, Frustration, Healthcare, Job, Rants, Support | 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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