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

The myth of a healthy youth myth

March 4, 2014

I can’t believe I had this conversation again today. The details vary, but it always goes something like this:

Me: I want to get healthy while I’m young enough to enjoy it.

Other person: Well, the “healthy youth” thing is really a myth. Not everyone feels good, and people get sick, and we’re busy taking care of kids so we can’t go out much anyway. And lots of older people feel great and are active, so maybe you’ll be one of those. Besides, we’ll all be feeling like you one day anyway, and then we’ll all be on the same page.

Yes, people really say this shit. Ok, let’s start with the first thing: the healthy youth myth. That myth idea is a myth itself. I’m not saying that people without chronic illnesses are healthy all the time. They might get the flu or headaches or whatever. Some days they just feel like crap. Sure, I get that. But the point is that they recover! They don’t continue to have the flu for the next 30 years.

Next, just because you use your energy-filled, pain-free days to do things other than jet off to Paris and go to fancy clubs, doesn’t mean you aren’t enjoying your youth. Do you have any idea how many of us would like to have kids but don’t have the energy to take care of them? So while you might say you can’t party because you have kids, others of us say we can’t party OR have kids. See the difference?

I’m not suggesting that every 20- and 30-something parties 7 nights a week. But I’m suggesting they can go to parties on Saturday nights. I’m suggesting they can attend a lecture on Tuesday evening. I’m suggesting they can take a shower and cook a meal without feeling like shit.

And yes, some older folks feel good and are active. But if I feel like shit at 30 and 40 and 50 and 60, do you really think I’ll be skiing and skydiving and traveling and going out with friends at 70 and 80? Do you know any of those active elderly? Maybe it’s just a coincidence (I really doubt it) but all of them were healthy active in their youth and in their middle age and then they continued to be active. You can’t expect an unhealthy body to magically get healthier as it ages. The chances that I’ll feel better at 80 than at 30 are really incredibly slim. And besides, at best I could feel good compared to a typical 80-year-old, but I’ll never get the chance to feel as good as a 30-something again!

And sure, maybe one day my friends will all be tired and in pain with arthritis. But they’ll have already had all of the experiences of youth! That’s the point! Yes, maybe one day we’ll all feel equally miserable. (Though to be honest, I think I experienced more pain and fatigue at 32 than my grandparents did when they were 80. At 80 they were still hopping on planes and traveling. Not me. They still went out with friends all the time. Not me. Just saying.) But when we stiffly sit in our chairs with our achy joints at 80, they’ll be surrounded by kids and grandkids if they chose to have them, and they’ll remember all of their fun adventures and activities from when they were younger, while I’ll remember days of my life seemingly wasted sorting through medical records and insurance forms, feeling lousy, watching tv and ready and missing out on parties and outings that I really wanted to attend. Yes, I’ll have fun times to remember, but not as many. Hopefully I’ll have let go of the anger and sadness of not being able to have children, but maybe not.

So to all of you out there who spout the myth of the healthy youth myth, I’m telling you it’s not a myth. Spend just two months pretending you have the flu. Leave your job, turn down every invitation you’re offered, don’t accept invitations. Now tell me if you feel like your old life allows you to be active or not. I’m guessing you’ll feel pretty damn healthy by comparison. If you’re tired because you stayed out at the bar too late, go to sleep earlier next time, but don’t pretend you have it so tough. At least you have a choice.

I was going to give an update today on the doctor planet orbit, but I was too upset. So please accept my rant as just that (a rant), and I’ll resume my normally unscheduled blogging tomorrow.

4 Comments | Educating, Expectations, Fatigue, Frustration, Insensitive, Isolation, Limitations, Pain, Rants, Relationships: Family & Friends & Dating & Sex, Support, 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

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.

3 Comments | Educating, Expectations, Frustration, Healthcare, Isolation, Limitations, Pain, Rants | Permalink
Posted by chronicrants

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