Wondering why I feel good

March 22, 2014

Today is my third good day in a row! The first was actually really great. Sure, I’m still in pain, and I don’t have as much energy as most “healthy” people my age, but I’m still loving how much better I feel! The question is, what’s causing it? I want to know the cause so maybe I can make it last! Here are my current thoughts:

  1. It’s my new medication. I started the new med exactly 3 weeks before my first good day. The problem is, usually good effects are felt within the first few days on this med. The changes are right – it’s my energy that’s improved, and that’s what I’d expect from this med – but the timing is off.
  2. It’s the medication I stopped taking. At my doctor’s suggestion, I stopped taking a medication two and a half weeks ago. Since the new med hadn’t had an effect yet, I wasn’t to worried about doing both so close together. I wouldn’t expect it to have this effect, but maybe it’s an indirect cause.
  3. It’s the supplement I stopped taking. I stopped it about a week ago when I realized my most recent gastrointestinal problems started just after I added in this supplement. Two days later, my gastro problems were mostly gone, and the third day everything was as it should be. That alone wouldn’t make me feel this good (my gastro problems were fixed for months before I started that supplement, and I didn’t feel this good then) but maybe in combination with something else it’s helping.
  4. It’s daylight savings time. I have seasonal affective disorder, so I always get extra happy and more energetic when we have the extra hour of daylight. The thing is, DST started two weeks ago, and I usually feel the effect within the first couple of days.
  5. It’s a fluke. This is an odd coincidence. Usually when I have a random good day it’s just that: one good day. Not three. But maybe this is just a longer fluke.
  6. Maybe it’s something else I haven’t even thought of yet.
  7. Maybe it’s a combination of all of the above.

Some of you might wonder why I’m not considering my new CPAP machine, and that’s because I only started it last night, two days after I started feeling so much better.

Right now, #1 seems the most likely, but the timing of it just doesn’t fit. But maybe there was so much damage done to my cells, that it was just delayed in taking effect. And my doctor did say it could take up to a month. I didn’t believe him based on all of the research I’d done and what other patients said, but maybe he was right. It’s odd that I’d have felt absolutely nothing for the first 3 weeks, though, instead of a more gradual improvement. But nothing else fits as well. It’s probably that with the other things added in. I just really, really, really hope it’s not a fluke! I’m loving this feeling so much, and I don’t want it to go away! I haven’t felt this good in many months, maybe even a year or more. It’s not like I feel “healthy,” but I sure do feel a hell of a lot closer than I did four days ago. I feel like I can do more so I’m trying to do more without overdoing it. I also feel that I’m thinking more clearly, so I’m reading more and getting more out of it. I feel happier, but I guess anyone would if they saw a spark of hope after feeling so sick for so long. Still, I’m just nonstop happy.

I guess there’s only one thing I can do for now: enjoy it while I can! I’m taking walks each day. I spent more time out with friends today than I normally would. I’m still not going to the party tonight that I had already been planning to skip. Right now I feel up to it, but I don’t want to overdo it. I’m reading more. I’m trying to catch up on insurance paperwork. And mostly I’m just appreciating this feeling of being more alert. It’s not perfect, but boy, I’ll take it!

11 Comments | Expectations, Fatigue, Healthcare, Medication, Milestones, Raves, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Hormones going haywire

March 12, 2014

It started like any other day. I ate, read, dressed, ate again. I went to an appointment. And that’s where it started getting weird. A medical practitioner was pushing me to open up about some things that I usually don’t talk about and I got a bit teary. Ok, that’s not too unusual for me. Then I started crying. That’s a bit odd. Then when I left, I sobbed uncontrollably IMG_20140312_153843for a while. That’s completely out of character.

What was going on? I called a friend and we chatted for an hour. Usually I find crying to be cathartic, so after crying and then talking to a close friend, I should have been feeling much better. Instead, I continued to feel overwhelmed, ashamed, and depressed. When I was still feeling that way at 10pm, I knew something was wrong. When I woke up the next day still feeling that way, I knew there was definitely a problem. Luckily, I quickly figured out what it was.

About 8 or 9 years ago, my endocrinologist put me on natural replacement progesterone to help my PCOS (polycystic ovary syndrome.) This worked out fine for a bit, but then about 5 or 6 years ago I started having PMDD (premenstrual dysphoric disorder.) My doctor had me change birth control pills. It took some time, but we finally figured out what worked. Over time that’s changed, and each time I had to deal with a roller coaster of emotions when PMDD reared its ugly head. Most recently we found that taking half a pill of a certain brand was perfect for me, and of course I continued with the progesterone, too.

With all these hormones, you’d think I’d have regular periods, right? Well, I did for a while. But then recently I was only spotting at that time of the month. Then I didn’t get a period at all. Hmm. There are a couple different things that can cause this, and the only way to find out what’s happening without going off my meds is to do a pelvic ultrasound. Obviously, I don’t want that. So I’m took a leap and went off my meds.

The first 7 days were fine. But then on day 8, when I found myself sobbing, I should have known. On day 9 it was obvious. And now, on day 10, I’m doing much better. Then again, I’m in too much pain to be thinking about anything else anyway. And while being so overwhelmed and depressed felt horrible, it’s a relief to know I won’t be feeling that way long term. If it continues, I’ll just go back on the hormones.

I’ve always been so grateful that I don’t have depression as one of the symptoms of my illnesses. There are usually two types of depression, at least that I know of. One type is a physiological matter. Brain chemicals are off, or the cells aren’t absorbing hormones, etc. The second kind is what you’d expect from someone suffering from daily pain, spending days stuck indoors, unable to work, unable to socialize, etc. I do have that second kind sometimes, but it’s not too severe and it doesn’t last too long, usually just for a couple of days when my physical symptoms are at their worst. I’ve been so grateful for that. And then the other day was a reminder of what I could be dealing with.

And that makes me wonder how many people, especially women, are in the same situation I could have been in. How many are put on antidepressants, when some added estrogen is all they need? How many women spend years in therapy without improving, without realizing that their symptoms get worse approximately every 28 days? How many women and men see a psychiatrist when they should be seeing an endocrinologist? Maybe the answer is that only a few are affected this way. Maybe it’s a lot. I have no idea if this has been studied are not. I just know that a lot of patients fall through the cracks in other areas, so it wouldn’t surprise me if it happened here, too.

I have fallen through many, many medical cracks. Anyone following this blog for a while knows a few of them, but I doubt I’ve even covered all of them at this point. For example, a specialist seeing me for something else once suggested I could have PCOS, but wasn’t allowed to treat me for it because of HMO rules. My own doctor didn’t address it. It took another 7 years for me to actually get diagnosed and treated. I’m so glad I didn’t fall through the cracks with the PMDD and depression. I just hope the medical community doesn’t let it happen to others.

2 Comments | Educating, Frustration, Healthcare, Limitations, Medication, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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

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