Seeing potential for progress

March 7, 2014

Whether you’re a long-time reader or you’ve only stopped by recently, you’ve probably noticed that I’m on a mission to feel better. I know I’ll never be 100% better, of course, but there’s a lot of room for improvement.

Two years ago, when I had to leave my job due to fatigue, the doctors told me there was nothing they could do to help me. I started doing my own research, searching out new doctors and other practitioners, and changing my diet. I’ve already seen huge improvement, but I also have a long way to go. Sure, I don’t nap anymore, but I sleep 10-11 hours per night and I’m still tired. I’m in more pain than before. My digestive problems are soooo much better, but still not quite right.

Remember how I was dealing with too many doctors and not enough help? Well, I saw one thyroid doctor last week and he actually agreed to keep me on my current med and give me the new one I wanted to try. Unfortunately, it’s been a week and I haven’t noticed any change yet. Still, it’s a start, and I’m on a very low dose. And I’m seeing the other thyroid doctor next week. So I’m keeping my arthritic fingers figuratively crossed and hoping that he has some new ideas.

At the same time, I did some of the testing that the sleep doctor wanted me to do. Some of it came back normal, which is good. Some of it didn’t, though. As it turns out, in addition to circadian rhythm issues, I have a sleeping condition that’s sometimes lumped in with sleep apnea. It’s similar, but different. When the doctor told me about Upper Airway Resistance Syndrome, it described me exactly. When I got home I looked it up and again, it described me exactly. There’s no doubt I have it, now we have to work on treating it. The doctor warned me that the insurance company might not cover treatment, but we’re going to move forward and see what they say. With any luck, I’ll be trying out a sleep apnea machine in a couple of weeks, and I’ll know shortly after that if it’s helping or not. I’m not thrilled about having to use the machine, but if it works, it’ll be worth it!! After all, I’ve given up gluten, most dairy, most eggs, peanuts, and many of my favorite vegetables (broccoli, beets, parsnips, and more) for the sake of my health. This machine wouldn’t be so bad!

There’s no way to know what’s causing my fatigue, but more and more I don’t believe there’s just one cause. The more I think about it, the more I think there are many contributing factors. My energy improved as my adrenals improved. My energy improved and I tried different thyroid medications. And I’m guessing my energy will improve when my sleep disorder is treated. I doubt any one of these things would “fix” my fatigue, but I’m hoping that all of them combined might just do the trick!

So now I’m really excited to try the CPAP machine. I’m excited in a way that healthy people will just never understand. Because maybe, just maybe, this will make me feel better. Maybe, just maybe, this will allow me to socialize more, date more, go back to work, and in general resume my life. Here’s hoping!

8 Comments | Expectations, Fatigue, Frustration, Healthcare, Limitations, Medication, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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 better! Ok, I’m probably getting ahead of myself. It could take time. But what if…..?

14 Comments | Expectations, Fatigue, Frustration, Healthcare, Limitations, Medication, Raves, Symptoms | Permalink
Posted by chronicrants

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.

Leave a Comment » | Decisions, Frustration, Gastrointestinal, Healthcare, Medication, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

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.

15 Comments | Decisions, Expectations, Frustration, Healthcare, Isolation, Limitations, Medication, Rants, Symptoms | Permalink
Posted by chronicrants

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