Why I must be my own medical detective, and you should be yours

March 17, 2015

I just solved a huge mystery. My doctors agreed that it makes total sense. But they didn’t think of it. I did.

It’s not easy to research a health condition. It can feel impossible when you don’t have a diagnosis. I went to the library when my symptoms started, but I didn’t find anything. That was in the pre-household-internet dark ages of the early 1990s. When I got online a few years later, I tried again, but I didn’t find anything. Years later the internet had more information it on so I tried again, and again, no luck. It was looking up symptoms. I didn’t have a diagnosis yet.

11 years after my symptoms started I had a diagnosis, but it wasn’t very helpful. Then I got more diagnoses. And more. And more. Still, I couldn’t piece together the puzzle. I was overwhelmed. I gave up.

One day in the library I was reading a novel and I suddenly had the urge to get rid of (or at least ease) my daily nausea. I found some books, and my journey began.

I was fortunate in many ways. The brain fog was bad, but I was still able to read. It was slow and torturous, but I did it.  I was educated enough to make sense of some difficult matter. I had just enough diagnoses to follow the right breadcrumbs. I had a fantastic library at my fingertips. I found the right books when I was in the right mindset. I was lucky. But I also worked damn hard. It took many, many months to get through those books. And it was worth every minute.

I’ve noticed lately that I have a lot more free time now that I’m not always studying those books and reading websites and following Facebook groups. It’s not that I’m cured, but I learned enough to get stable, and I was ready to take a break before tackling the next thing. I’ll do it at some point, but now I’m resting.

A couple weeks ago I was having bad brain fog. (I still am.) It came on suddenly and I didn’t know why. Maybe it was the estrogen I’d recently started again for my PCOS (polycystic ovary syndrome)? I could imagine why that would make a difference, but that was the only change in my medications. Or maybe it was the change in seasons? I always have trouble when the seasons change, especially in the spring. I checked with my naturopath. She agreed estrogen itself wouldn’t have this effect, but maybe the fillers would. Or it could be the change in seasons. But that didn’t feel right. I know how that feels, and the symptoms, their degree, and the style of onset just didn’t feel like it came from the start of spring.

There was nothing to do but wait and see. I hate that. But I had no choice, so I waited. Then the other day I looked in the mirror and noticed one eyebrow was thinning near the end. That was odd. It’s a classic hypothyroid symptom, but my thyroid has been stable! I have Hashimoto’s Disease, so antibodies are attacking my thyroid. In theory that means that I’ll need to adjust my medications over time, but my immune system has been calmer lately. And besides, wouldn’t the onset of brain fog be more gradual? It didn’t seem right.

Then a few hours later it hit me: the estrogen! I’d read in my research that estrogen affects the thyroid hormone delivery system. I’d paid attention because at the time I was taking estrogen for my PCOS. I went off of it later. If the estrogen I started a few weeks ago was binding those thyroid hormones, then it could have made my current thyroid dose partially ineffective and caused me to become hypothyroid again! This explains other symptoms, too, like my slight depression, moodiness, and increased appetite.

I emailed my naturopath. She agreed. I emailed my thyroid doc. He agreed. I’m getting blood work done tomorrow. There’s no doubt in my mind that I’m right, but the blood work will confirm it and then the doctor can write me a new, higher prescription.

No doctor was going to catch this. That was clear. I was going to continue to get worse and worse and maybe, just maybe, someone would have eventually realized it was my thyroid. But how sick would I have gotten? Instead, we caught it early – I’ve only been on the estrogen for 3 weeks. With any luck, by next week the brain fog will have lifted and I’ll feel stable again!

Being a detective isn’t easy, but it’s necessary. No one cares about my health more than me. No one will fight harder for my health than I will. And no one can understand my body better than me. Someone else would look at my history and say that this was the same thing I deal with every March. Only I could know that it wasn’t because it just didn’t feel like it.

Think about what you know about your body and your health that no one else can know. Then, when you feel up to it, consider doing a little reading. And please come back here and let me know how it goes!

Do you do your own research? Have you felt it was worthwhile? Please share your experiences, good, bad, or otherwise, in the comments!

2 Comments | Educating, Expectations, Frustration, Healthcare, Limitations, Medication, Raves, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

Giving myself permission to have an off day

March 5, 2015

Some days are obviously really good and some are obviously really bad. Some are in the middle. I generally feel happy as long as I don’t feel really awful physically. But there are exceptions to every rule.

Today I feel off. My pain isn’t too bad, maybe a 4 on my pain scale, so I’m ignoring it. I’m not particularly fatigued. I have a long list of things to do, and I’ve been doing them, bit by bit. So really, it’s a fine day. But I feel…. off.

It’s been dark and overcast. For someone with Seasonal Affective Disorder, that’s a recipe for trouble. I also went back on a med this week, so that could be contributing. But of course, there’s no way to be sure. I’m not sad, exactly, just a bit down. Nothing is wrong. My family is great, my friends are awesome, my health is relatively stable. I didn’t have anywhere to go today but I didn’t feel stuck inside, I just thought of it as an opportunity to get more things done around the apartment. Then again, normally I would push myself to get out and take a walk, but today I didn’t. I knew I needed to; the more I sat, the more I felt my joints stiffen up and become more painful. But then I’d look at that dark sky and I had no desire to go anywhere.

I’m not fighting it. If I felt this way every day, there would be a problem and it would need addressing. But one day? I’m giving myself a pass for one day of feeling this way. I will let myself feel a bit down. I will spend more time than I otherwise would on the computer. I will watch silly tv. And I won’t stress out about it or feel guilty about it, because what’s the point?

I just hope tomorrow is a better day.

Leave a Comment » | Expectations, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
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On not noticing the pain

March 2, 2015

The point of pain is to make you aware that something is wrong with your body. At least, that’s supposed to be how it works. Unfortunately, for some of us that system is malfunctioning.

In theory, you feel pain, you pay attention to it, you try to fix the source of it. But when your pain is constant, that’s not how it works.

My pain started more than 22 years ago. I’d have it for days, weeks, or months at a time. It would randomly go away, only to return at some unexpected time. Then about 19 years ago, it changed: it got worse and it became a 24/7 presence in my life.

Most people would expect me to have been thinking about my pain every day then and now. And in a way I did and do, but not in a focused or conscious way.

After all these years, I know what movements and actions will trigger pain and I avoid those. If I absolutely had to pick up something heavy or move in certain ways, I literally wouldn’t know how to do those things now. It’s been so many years, that I don’t remember how. Like riding a bike. I stopped riding a bike due to the pain and I’m pretty sure that if I tried now, despite the well-known saying, I’d fall over (at least in part because my center of gravity has shifted quite a bit since I was 16.) So I suppose that in avoiding those triggering actions the pain is on my mind, but only in the background.

These days, I only pay attention to the pain in two situations:

  1. When it spikes. I can’t ignore those sudden increases.
  2. When it’s consistently severe. I can ignore pain up to a 6 on my pain scale (with a range of 1-10) fairly well, and a 7 if I need to, but above that I can’t ignore it. When it hits 8.5 I start considering taking pain meds, even though they have side effects that I hate.

So what about the rest of the time? Well, I notice it sometimes, but it doesn’t take up a lot of room in my brain. Other times I forget that I’m even in pain. When the doctor asks if I’m in pain, I sometimes have to stop and take inventory of my body. Because otherwise I’m not sure. Other times I’m in a lot of pain and it’s obvious even to me.

I’m not saying it’s easy to ignore pain or even that it’s natural. For me, it was a matter of self-preservation. When I was 17 I reached a point of exhaustion and I just had to learn to sleep through the pain. There was no other way to function. So first I began to sleep through the pain, then I pushed it farther and farther back in my mind as it became my new normal. And there were other things on my mind. I was applying to colleges, going out with friends, dating for the first time, fighting with my sister, thinking my parents were unfair (hey, give me a break, I was a teenager!) and spending many hours on homework. I had, you know, a life.

In other words, there was more to my life than just the pain.

Even now, when my life is more taken up by my health problems than it was in those early days and I can’t work at a job, I have non-health things going on, too. I date a bit, I spend time with friends, I volunteer. And, yes, I take care of my health constantly. In an odd way, that’s also a distraction from the pain.

So now, like then, sometimes I’m too busy to think about the pain. Sure, a 5 on the pain scale would upset most people. And I admit, if I suddenly feel a 5 in a new place, I can’t ignore it. But if I feel a 5 in an area where I’ve had daily pain for years then sure, it might not get my full attention. A part of my brain picks up on the pain signals, decides it’s not worth addressing, and relegates it to the back row of my attention theater.

A little while ago, in the middle of typing an earlier paragraph, the pain got bad enough that I could no longer sit up in a chair. I noticed the pain. I had been ignoring it for most of the last week and my body finally gave me some clues that if I kept ignoring it, I’d be paying a steep price later. And that’s why I’m now typing to you from my couch. But while I was busy continuing this post, I forgot about the pain completely. I wasn’t aware that I was even in any pain at all. Now that I think about it, yes, it’s still there. It’s significantly better than it was when I was in the chair. No doubt that it’s better. But it’s there. And if I wasn’t so used to it I’d probably be worried that something was wrong with my body.

But I know better than that. And that’s why I’ll keep going about my day, doing as much as I can so I can cross things off my “to do” list for the day, and only noticing the pain if it gets worse again. Until then, it won’t even cross my mind.

And if it does, I’ll shove it away.

6 Comments | Expectations, Frustration, Limitations, Medication, Pain, Symptoms, Unpredictable | Tagged: , | Permalink
Posted by chronicrants

My improved health: how I got here

February 16, 2015

A friend recently asked me what has helped me the most. I’ve thought about that vaguely from time to time, but this time I really considered what got me to where I am.

Three years ago I had left my job hoping to go back soon, and instead I found myself feeling steadily worse. I was house bound 3-5 days per week, on average. An afternoon with a friend would leave me barely functioning that evening and all of the next day. My memory was lousy, I was nauseated all the time, the fatigue was debilitating, and the pain was getting even worse.

Now, I only spend 1-2 days at home each week, and when I go out, it’s for longer stretches of time. I do more each day. When I’m home, I don’t feel as bad. The GI symptoms are almost entirely gone, the pain is mostly stable and an acceptable (for me) level, my memory is better (but not great yet), the fatigue has improved so much, and I can recover from an afternoon out pretty quickly. It feels like a miracle! But it wasn’t a miracle, it was a lot of hard work and a bit of luck.

I think what helped me was a bit of an insurance doctor, a lot of my naturopath, and a huge amount of me.

The doctor that the disability insurance company made me see encouraged me to see a sleep doctor. I had been thinking about it, but he nudged me more in that direction. I did sleep studies and started using a cpap machine, and it made a huge difference. For the first time in ages I was waking up feeling slightly better than I had when I went to sleep!

My naturopath did a lot for me. I was already gluten free, but she got me off dairy and helped me figure out the other foods I should avoid. She got me on various supplements that have been helpful (and some that weren’t, but that’s ok – it’s all trial and error, right?) She got my vitamin D levels up, improved my zinc levels, and found a multivitamin that didn’t make me feel ill (something have had problems with for many years.) She tested my adrenals and got me on supplements to help them. She guided me through every step of the process.

The luck was that I had medical conditions that could be improved. Not everyone is so fortunate, and I am grateful every single day that I had options, even thought I had to work incredibly hard to find them.

And then there’s me. When I was barely functioning 3 years ago, and the doctors were all telling me there was nothing they could do, I decided to at least learn a bit more about my situation. I picked up a book at the library, and that led to more books, blogs, and online support groups. Reading was slow thanks to the brain fog and fatigue, but I eventually learned that my hypothyroid treatment wasn’t the only option, despite what my doctor had said. I did more research. I learned which kinds of doctors I should see. I made many phone calls. I learned about naturopathy and researched naturopaths, eventually choosing the one that I see now. I went on a gluten-free diet. Later, I stuck to the more restrictive diet that my naturopath recommended. It wasn’t easy, but I did it. More recently, I cut out all trace amounts of gluten, like from lotions and from kissing someone who’s eaten gluten. Again, it isn’t easy, but I’m doing it. I’ve swallowed more pills per day than I’d like to think about. I’ve stressed about the financial cost of it all. I’ve fought with insurance companies and with doctors. When a doctor I’d waited months to see was unexpectedly out of the office and I was given a substitute (who was useless, by the way) I complained to the head of the office and got an immediate appointment with the doctor I wanted (who was incredible!) I pushed myself to do more than I wanted to do. When a doctor didn’t want to give me the hypothyroid treatment I wanted, I found someone new (and the treatment change was a good move!) I found a new podiatrist when I felt my orthodics weren’t right, I restarted physical thearpy, and I learned about trigger points. As I felt better, I moved on to new lines of research. I followed up every lead from books I read and from patients I spoke to. I like to knit, and sometimes, as you’re knitting along, pulling at the yarn, you’ll encounter a knot, and it’s hard to untangle it. I’ve been untangling the knot of my health conditions for the last few years.

The main thing I did was I ignored all of the naysayers. The doctors told me I couldn’t get any better. Friends and family thought I should stick with “traditional” medicine. But I stuck at it. I didn’t do anything that didn’t seem to have some solid research behind it. I listened to patient experience, but I didn’t follow up on anything unless multiple people had had good results, and then I was still careful. And all along, I knew it might be for nothing. I knew the doctors might be right and I might not get any better, but I held out a glimmer of hope, too.

I won’t pretend I’m perfectly healthy now. Or that I ever will be. I know that my health conditions are permanent. The best I can hope for is to go into remission, and even that is a long shot. But I’m trying.

Because I could have given up. I could have accepted what the doctors told me. I would now be bedridden, with no hope of any improvement. That could still happen some day. I know that. But I’m focusing on one thing: today is not that day.

I’m not suggesting that my story is one that can be replicated. I’m not trying to be inspirational or any of that other bullshit. I’m not pushing anyone to do what I did if they don’t want to. I’m simply trying to answer the question I hear over and over from friends and from readers: “How did you manage to improve?” I’ll gladly give more details if anyone wants them, but for now I’ll just say, it was a bit of luck, a fair amount of searching for the right medical providers, and a whole lot of effort by me.

Leave a Comment » | Decisions, Educating, Expectations, Fatigue, Gastrointestinal, Healthcare, Isolation, Limitations, Medication, Pain, Raves, Symptoms, Unpredictable | Tagged: | Permalink
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