A new approach to fatigue: fixing sleep

February 28, 2014

It amazes me that some people go to sleep at night, sleep for 6-8 hours, and wake up feeling refreshed, energized, and ready to start the day. I don’t think I’ve felt like that more than a few times in my entire life. But I’d like to try feeling that way more often.

Fatigue is a tricky symptoms. It can be caused by so many things. I’m pretty sure that mine is caused at least in part by my thyroid issues and adrenal problems, because as I fixed my adrenals, I felt better, and when I started dessicated thyroid they fatigue improved even more. I no longer fall asleep while reading (except in bed at night), I don’t nap during the afternoon, I can leave the house three days in a row without feeling like I’m going to collapse. Then again, I still have a ways to go. I can’t leave the house every day for a week, even if it’s only for small things. I can’t do laundry in the afternoon and then go out with friends for dinner. Spending an afternoon chatting with a friend is completely exhausting. I’m so grateful for all of my improvements, but I want to improve even more.

I’m trying new medications for my thyroid problems, and I’m hoping that will help, but I’m not going to assume that’s the solution. What’s if there’s another contributing factor? That’s why I saw a sleep doctor. This guy is one of the best around here, and I really liked him when I saw him many years ago. At that time, I did a sleep study that showed some apnea, but not enough for a cpap machine. That’s the machine where a mask over the face at night helps the person breathe. The doctor found that my circadian rhythm was off, like I was in permanent jet lag. He told me to take a very small dose of melatonin and use a blue light (sometimes called a sun lamp) in the mornings. That made a huge difference, and for a while I felt much better.

With the fatigue over the last couple of years, it seemed worth checking out my sleep again. Besides, I felt like I wasn’t sleeping well. I was waking up just as tired and sleepy as I’d felt when I’d gone to bed. In the last year, I’ve been having dreams that make me feel like my sleep isn’t as restful. In the last few months, I’ve been waking up a lot during the night. I knew something was wrong.

The downside of seeing such a top doctor is that he has very long waiting lists. I made an appointment in June and finally saw him in December. He suggested a few changes to the melatonin and blue light, and ordered some tests. One of those tests was a sleep study and his report on it popped up on my online hospital account today. (I’ll find out more when I meet with the doctor next week, but I can see notes as soon as he enters them into my records, which is awesome. I wish all of my doctors’ systems did this!) According to the doctor’s notes, I have sleep apnea and need to use a cpap machine. Ah hah! I knew it! Ok, I’m not happy about having to use the machine, especially as a single person who hopes to one day share my bed with someone else. On the other hand, what if this helps?! I can’t imagine anyone would feel energetic without ever getting proper sleep, so maybe this is one of the keys.

I don’t think this sleep issue is my entire problem. But maybe, just maybe, the sleep, thyroid, and adrenal issues combined are what’s causing the fatigue. I’m already addressing the thyroid and adrenal issues so maybe, just maybe, fixing the sleep problems will make me feel well enough to slowly, eventually, get my life back. Maybe I’ll be able to socialize more, get a job, and just feel betterOk, I’m probably getting ahead of myself. It could take time. But what if…..?

The big medical marijuana problem: paying for it

February 26, 2014

I was going to write about some events that happened yesterday but I’m still too upset, so those will have to wait. Instead, let’s travel back in time to Monday.

As I wrote then, I had a lot to do on Monday, and most of it was health-related. A big item on my list was to make an appointment to get a prescription for medical marijuana. As it turns out, it’s called a certification, not a prescription, but that’s just one of the things I learned.

I had been putting this off. I kept hoping that if one of my new meds worked, then I wouldn’t need medical marijuana for pain very often, or maybe not at all. But it’s been months and the meds haven’t worked. If anything, some of my symptoms have even gotten worse lately. After a horrible bout of pain and nausea the other night, which was only helped by the marijuana I happened to have already, I’d had enough. I finally decided it was worth getting the certification. I won’t use it often, so I considered just buying it off the street, but even from a trusted source, I couldn’t be sure what I’d get. Besides, some strains are better for the treatment of chronic pain, and I’d need to go to a proper provider for that. I got the names of doctors who will write the certification from friends, and was told it would be $200. Oy! And keep in mind, that’s $200 for the certification. I’d still have to buy the marijuana, the vaporizer, and everything else. But what can I do? And I’m already spending so much money on healthcare that isn’t covered by insurance, so what’s a bit more, right?

You might be wondering why it’s so expensive. I’m no expert, but here’s my understanding:

  • Any doctor is allowed to give the certification by law, but most medical centers aren’t comfortable with it and don’t allow their doctors to do it. Also, most doctors don’t have the experience with medical marijuana to make them qualified. After all this isn’t taught in medical schools.
  • The doctors that offer the certifications don’t take health insurance. I’m not sure if this is their choice or the insurance companies’ choice. I’m guessing it’s both.
  • Massachusetts is being very slow to set up medical marijuana dispensaries. They were approved by ballot in November 2012 and we don’t have them yet. In theory, they should be running later this year. That means most people aren’t using medical marijuana yet. So there aren’t as many doctors to offer certifications yet. That lack of competition means that prices can still be high.

So on Monday I picked up the phone to make my calls, and I wasn’t please. One friend told me the place she went was sketchy, and it sounded that way to me, too. That one was $200 for a 1-year certification. The other place seemed more professional and was $250 for the initial visits, with required follow-up visits for recertification every 6 months at a rate of $100 each. I found another online that seems great. That’s $250 for the initial visit and $200 for the recertifications every 6 months. And again, this isn’t for the marijuana, just for the certification so that I can legally buy it.

Those are the numbers, and they really suck. Being sick is expensive. We all know that. But it amazes me just how much of my medical care and treatment isn’t covered by health insurance. This is just one more example. So now I need to decide, should I go to the sketchy place for $200 for the first year, or a more legitimate place for $350-400 for the first year? What lousy choices.

Complaints from a so-called non-complainer

February 24, 2014

My friends often comment on how amazed they are that I never complain about my health problems. I talk about my problems, of course, but I don’t complain about them. I just state everything matter-of-factly.

Maybe that’s why I was greeted by so much silence this evening. I was talking to a friend on the phone who knows about my health problems. In fact, he’s seen me at some of my worst moments. But he’s never heard me really complain about it. He made a comment about the career-ending injuries that professional athletes deal with and how they entitle the athletes to large salaries, and that sent me off on a big rant. I finally calmed down, but then started up again a few minutes later. The thing is, for me, it’s all about timing.

I get frustrated by all of the bullshit I have to deal with. Anyone would. Just look at what I wrote the other day. So yes, I do get upset by this stuff, but I rarely complain to my friends or family. Instead, I think it through. I let it out in small doses by venting about specific issues when they occur, not complaining on end about the situation in general. I write about it on here when I need to. I use my energies to at least try to educate people. And that’s enough for me.

Normally, after a day like today, I wouldn’t have called any friends. I had dealt with a lot and needed to be reflective, so I wasn’t in the mood to talk to anyone anyway. But this friend and I don’t talk often, so when he called and I was in the middle of doing healthcare crap, I said I’d call him back. If only I’d paid more attention to how I was feeling.

I guess that after a day like today, most people would be frustrated. I got 19 things crossed off my to do list today. That’s practically a record for me! I had set aside the day for this. I had actually managed to sleep relatively well and the sun was shining, so that helped a lot. I mixed up easy things and harder things. I didn’t do anything too physically demanding. And I just got it done. And of those 19 things, 3 involved helping family members with their health, 6 had nothing to do with health, and 10 had to do with my own medical and insurance issues. That’s absurd! I spent the day tracking down medical records, making appointments, and researching medical marijuana options. I emailed with my lawyer, texted with a friend about her medical marijuana prescription experience, and left messages for doctors. Sure, I took 30 seconds to renew my library books online. Then I took another minute to request a library book online. Those were quick and easy. The whole time, my computer was running a backup program in the background. That was another item to cross off my list. But the rest of the day, at least the parts that I wasn’t resting, were all about medical shit.

The good part was that I got everything done except the appointment for the medical marijuana prescription (I’m still bracing to spend hundreds of dollars per year for the prescription, in addition to the cost of the marijuana itself, but what choice do I have?) I’m hugely relieved that the rest is done. At least, the rest of today’s list is done. I still have more to do later in the week. And that’s just it. It’s never-ending. And so much of it is unnecessary. I’m spending hours and hours dealing with insurance bullshit and red tape and doctors who won’t run tests because the insurance companies pressure them not to and doctors who won’t prescribe medications because they aren’t “conventional” even though they’ve been proven to work. Who wouldn’t be frustrated after months, years, ages of dealing with that?

So my poor friend called me on exactly the wrong day. I needed to get out my frustrations, and since I couldn’t do my relaxing activities (tv, reading, crochet) and think it through, he got the brunt of all of that built-up anger. And while I’m glad that my friends don’t see me as constantly burdening them with my complaints, it’s also good for them to understand just what I’m going through. Because when they ask what’s going on in my life, the truth is, it’s this.

Orbiting the doctor planets

February 22, 2014

“Can’t you just take a pill”?

“Yeah, right.”

We all hear this. But for me, there’s no cure. The best I can hope for is a combination of treatments that might help. I’ve made a lot of dietary changes. Thankfully, I can do those on my own. I’m also fortunate to be able to research medications and supplements. If I just listened to my old doctors, I’d be much worse off. Instead, I’ve seen a lot of improvement. Unfortunately, I still have a long way to go.

Because of my research, I know what I want to try next. I just don’t know how to get it. Sound familiar? Figuring out what to try was hard enough, but this is even more frustrating. I want to try adding another medication to my current one. It’s a very common combination in some areas, but unfortunately not a lot of doctors around here do it. Actually, that’s not true. Plenty do it, but they don’t take insurance and they cost a lot of money. The doctors that take insurance instead tend to prescribe med X, which is more profitable to the pharmaceutical companies. They buy into the hype from the pharma reps, and that’s all they offer. It took me ages to get med A, and now I’m stuck trying to get med B.

Dr. P prescribes med A a lot, actually. I was lucky to find him. Unfortunately, he doesn’t usually work with med B and he hasn’t been returning my emails. Dr. D could potentially be helpful with this, but he hasn’t returned my last three phone calls about a different, simpler matter, so I can’t really trust him with this. Dr. H works with med B a bit, and has been willing to prescribe it in the past. Unfortunately, he doesn’t believe in med A, and would want to combine med B with that with med X, which I’d rather avoid. I was on med X for 9 years and was very sick. I don’t want to go back. Dr. S thinks I should try something else first, but she understands my reasoning for this, and is willing to support me. Unfortunately, in Massachusetts naturopaths aren’t allowed to prescribe medications, so her support only goes so far.

I’m so lucky to have this many medical professionals to turn to, and yet none of them are able to help me! I can’t see spending thousands of dollars per year for a doctor who isn’t covered by insurance, but I’m feeling like I’m running out of options. The doctors all seem to be clustered together and I’m circling them, unable to find a way to make contact and have a reasonable conversation where we all speak the same language.

My friends try to listen sympathetically when I talk about this bullshit, but the truth is that they don’t really understand, and I don’t blame them. After all, who could possible understand such an absurd system if they don’t have to deal with it directly? I wouldn’t either. But in my current situation, I have no choice. So I’ll spend the weekend feeling annoyed and pissed off and frustrated, and on Monday I’ll go back to making phone calls and trying to get in touch with these moving planets that I’m forced to deal with. Grrr.

Explaining why I don’t work to potential dates

February 15, 2014

I’m a pretty open person when it comes to the health-related crap I have to deal with. There are some things I don’t like to share, but not many. I’ll share about 98% of what I deal with when I talk to family and friends. Acquaintances hear a lot. I’m even pretty open with strangers. Until, that is, the topic of jobs comes up.

Last night was Valentine’s Day, so I did what so many singles do – I went to a singles party. This was a much better party than most, which is why I went. It had awesome people, it wasn’t in a club, there was some background music but it wasn’t too loud, and the entire point of the night was to have actual conversations with people and then exchange phone numbers/email with people you’re interested in. I’d gone once before, and this time was even better. I pushed my body hard and was thoroughly exhausted when I got home, but I felt it was worth it.

Aside from the aches and pains and exhaustion of standing so much, there was just one problem: the question, “What do you do?” This isn’t a very common question in some cultures. In Boston, it’s one of the first things people ask. They use it to define you, to learn more about you. It makes some sense, since people spend so many hours working. The problem is, how can I answer it? In general I’ll gladly tell someone that I’m not working because of health issues, but not if I think I might want to date them. I don’t want to scare them off yet!

I spent the night saying, “I’m not working right now.” But then the next question was always to ask what field I work in, and so many people asked if I’m looking for work, or what I’m looking for. I’ll be evasive, but I won’t lie, so that was a lot harder. I usually said I’m considering my options, which is true. I’ve been giving a lot of thought to what kinds of work I could do when/if I’m able to work again, even part time. But I just know that on any first date, the subject will come up again, and what then?

In the long run, whoever I end up with will have to be ok with my health issues and my inability to work, at least right now. The issue is that I want to introduce the topic slowly, and on my own terms. I want them to get to know the parts of me that aren’t controlled by my health problems, and that’s hard to do if health problems are the first thing they learn about it.

It feels like I’m trying to navigate a minefield. So I’m going slowly, one step at a time. I don’t know what I’m doing, but I’m hoping that maybe, one of these days, I’ll figure it out. In the meantime, if you have any suggestions, I’d love to hear them in the comments.

The difference between feeling sick-sick and normal-sick

February 11, 2014

When you feel sick every day, it’s hard to explain to someone that some days can be a different kind of sick. That’s how I feel today, that different kind of sick.

I don’t have a cold. I don’t have the flu. This is more like the feeling I used to get a day or two before I’d get a cold, actually. So technically it’s nothing. I’m not sneezing or coughing and I don’t have a fever. But I don’t feel right.

I’m tired, but not in the way I’m usually tired. My stomach isn’t right, but not in the way my stomach usually isn’t right. I slept late, but not in the way I usually sleep late. I slept later and more restlessly. Something feels wrong, but not the way something usually feels wrong. How can I explain that to people?

My plan for today was to do laundry. Then, if I had energy, I’d go grocery shopping. Then I was going to cook for dinner. I had a feeling that would be too much for one day, but I was going to try. At the very least, I’d do laundry. Instead, I did none of those things. I didn’t even read my book, send emails to doctors and lawyers, or call the cable company like I wanted to. No, today I felt lousy, so I did none of those things. Instead, I emailed a friend and watched a movie. That’s it. And it feels like a lot. I’m tired and run down and wanting to go to bed. I wish someone else could make me dinner, even though I’m not very hungry. Usually I’m tired and run down, but I don’t wan to go to bed. Usually I wish someone else would make me dinner because I’m tired, but I’m also hungry. You see the difference? It’s small, but it’s there. And I know that the way I feel is definitely different.

So yes, I feel sick every day. But today isn’t my chronic illness type of sick. Today is sort of a normal kind of sick. And I won’t say that it’s better or worse. Just different.

Looking so hard for a good treatment path

February 9, 2014

At first I titled this: “Looking so hard for the right treatment path” but I’m not so sure there’s just one right path. And even if there is, I might not be ready for it; I might need to take a bunch of small steps before I’m ready for a bigger one.

Sometimes there are fairly clear treatment options. If you break a leg, you probably need to get it set in a cast. If you have an infection, you’ll probably take antibiotics. If you’re allergic to peanuts, you won’t eat peanuts. But sometimes it’s not so straightfoward.

I’ve written before (and also here and here) about having trouble choosing treatment methods. This is definitely not a new problem for me! But once again I find my path blocked and I’m not sure which way to turn.

I could turn in the direction of medication changes. I could switch to a different brand of my current thyroid med, change the dose of the current med, or switch to a synthetic version of the med.

I could turn in the direction of supplements. A lot of hypothyroid patients swear by the efficacy of iodine. But just as many others say it made them worse. Or maybe there’s a different supplement I should try.

I could turn in the direction of dietary changes. A lot of autoimmune patients say that the Paleo diet helped them put their illness into remission.

I could turn in the direction of other specialties. Maybe I’ve done as much as I can for my thyroid at this point, and instead I should be focusing on other areas.

I could turn in any one of those directions, but I can’t be sure which is best. The doctors disagree. None of the treatments I want to try are “traditional” methods, at least not these days. The literature in inconsistent. Every patient swears by one method while another swears against it. I know that I should only try one thing at a time, but where should I begin?

It’s frustrating, so frustrating, to feel lousy and not know what to do about it. I feel like a broken record, but that’s just what I’m dealing with again and again and again.

The good news is that I will try something. It might work or it might not work, but at least I’m going to take action. For me, that’s better than being passive, at least. I just hope I don’t make things worse. I guess that’s why I research everything so carefully. Now, to figure out what to try next….

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