From unconsciousness into pain awareness

October 6, 2013

Last night I went to bed thinking about the probable rain we’d get today. I made plans with friends a month ago, and they involved being outdoors today, so I was really hoping it wouldn’t rain.

Normally, I would wake up on a rainy Sunday and immediately enjoy the quiet, the peace, that we only get on rainy

Why must you hurt me, thumb?

Why must you hurt me, thumb?

Sundays in this neighborhood. No cars, no trucks, no shouts. The sound of rain against my bedroom windows. Heaven. Normally I’d enjoy that. Today was different. You’d think I’d have first thought about my ruined plans, but no.

The first thing I noticed was pain. I tried to go back to sleep but couldn’t, which made my brain wake up a bit – why couldn’t I sleep? The pain wasn’t that bad, and I’ve gotten good and sleeping through mild to moderate pain over the past 20+ years. I slowly realized that the pain was in a new place. Huh. That’s not good. I figured that’s why I couldn’t sleep. Every time pain appears someplace new, it takes me some time to learn to ignore it. As I lay there in the dark, I started to realize that this pain was different. Instead of pain in my joints, it was in my thumbs, above the top joints. This was weird. And it wasn’t the usual pain, this was a throbbing pain. And it was both thumbs. I never get symmetrical pain, so this worried me. And suddenly I was a bit more awake.

Cuddled under the blankets, I gave it some thought. What did I know? I knew that I had a new kind of pain, in a new place, and it was symmetrical. I could call my doctor, but I doubt she could do anything by phone. And the office is closed on weekends. Was it worth going to the hospital? Nope. I could wait. If was still a problem tomorrow, then I could call and be seen. But I still doubt they could do anything. How worried should I be? I had no clue. Maybe I should go back to sleep? I tried, but no luck.

And then I noticed that it was raining. It was quiet and peaceful. Oh shit! My plans had to be cancelled!

3 Comments | Expectations, Frustration, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

My timeline for going out

September 25, 2013

2 weeks before event: put potluck in calendar

1 week before event: see potluck in calendar, see many other things in calendar, wonder if I’ll make itDinner

Sunday: thinking potluck is a good idea

Monday: figure out what to cook for potluck

Tuesday: feeling optimistic; buy ingredients for dish for potluck

Wednesday morning: stay in all day to rest up for tonight’s potluck – yay!

Wednesday afternoon: figure out timing for cooking and travel

Wednesday evening: cook dish for potluck, look up directions to place of potluck, start getting dressed for potluck

Wednesday evening, later: realize I don’t really want to go to the potluck; ok, I want to go, but not as much as I want to stay in my pajamas and watch tv all evening; yup, that’s what I want

Wednesday night: watch tv, eat the dish I made for the potluck, remember that I’ll go out another time, hope that some day nights aren’t so tiring for me, feel glad that I’m just feeling a bit tired and not feeling completely horrible like some other nights

Thursday will be another day with new opportunities.

8 Comments | Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Impatient for Improvement, Part 2: Stubbornness

September 19, 2013

Brain fog kicked in when I was writing my last post. I lost my train of thought and never came back around to something I really wanted to write about. Then fatigue kicked in and stopped me from proofreading my post. I hate to think about all of the typos, but by not rereading it I also never realized what I forgot to write. So here’s what I would have included:

There’s a danger in having such high hopes. The great thing is that it’s helping me to feel positive, to look towards a brighter future, to feel that there’s potential for and improved quality of life. But the downside is that it might not work. I could be completely wrong. My symptoms could be from another condition or from many conditions. Or maybe I’m right about the problem but for some reason it can’t be fixed. What then?

We all go through many stages of acceptance with our illnesses. I went through denial and depression and anger before finally accepting my condition. Then I got a new diagnosis and I went through it all again. Two years ago I thought there was no hope at all for improvement. I desperately hoped to find a way to slow down the progression, but I couldn’t find what it might be. I felt that what I had was permanent and would only get worse. Even remembering that now, typing these words, my eyes are filling with tears. It was a difficult time.

And then I took matters into my own hands. I read books, called medical professionals around the country, spoke to other patients, and slowly, very slowly, got an idea of what was going on with my body. That is what has brought me to where I am now.

My current status isn’t great. I know that. But I also know that it could be worse. It was worse. It was worse just two years ago. And that tells me that even if I can’t improve the way I want to, at least I may be able to prevent a backslide to where I was, at least for a while. It also tells me that even if I’m wrong about my current problem, I may be able to figure out another course of action. I may be impatient, but I’m also stubborn as hell. I get annoyed at how stubborn my parents and grandparents can be, but I also thank them for it. After all, they passed that stubbornness on to me, and it is what’s keeping me going, propelling me to move forward, and making me refuse to accept defeat from my illness.

I know I might be wrong about my current health plan. I know that. But I also know that I lived without hope for improvement for many, many years and I managed. I also know that in the long term I can keep a somewhat reasonable level of health; at least, it’s better than what I had before. Finally, I know that I will not give up in the long term. Sure, maybe I’ll give up for short periods of time, but overall, I’ll keep fighting. I’ll hold on to the stubbornness.

 

4 Comments | Decisions, Expectations, Fatigue, Limitations, Medication, Milestones, Rants, Symptoms | Permalink
Posted by chronicrants

Impatient for Improvement

September 17, 2013

I vaguely (damn brain fog!) remembered writing something about wanting to get better soon, so I looked through recent posts and found this one. It’s hard to believe that was only a month ago. I feel like so much has changed, even while it’s all stayed the same.

In that post I wrote about a recent increase in energy. Unfortunately, that didn’t last. After several glorious weeks I had a physically difficult treatment, had several bad days following it, and never got that energy back. Still, I’m feeling fairly optimistic. That when attitude has really taken over my entire perspective.

After many, many years of symptoms, I’d gotten good at understanding my body, but recently it’s gotten to a whole new level. I’m more aware than ever of body temperature changes, heart palpitations, joint stiffness, and other smaller symptoms that I used to ignore. I’ve gotten a really good sense of what’s happening with my body.

On top of that, I’ve been reading! Thanks to my local library, I’ve read a bunch of books about what I now believe is the main cause of most of my serious symptoms: Hashimoto’s Disease. I believe that Hashimoto’s caused my hypothyroid, and when the hypothyroid wasn’t properly treated it led to adrenal insufficiency, low iron, and other issues. For once, I think I know what’s wrong. And even better, I have an idea of how to treat it!

The thing about treating hypothyroid is that the secondary issues (low iron, adrenal insufficiency, vitamin and mineral depletion) must be treated first or else the thyroid treatment won’t work and it could even make symptoms worse. I’ve been working on fixing those secondary issues for a while and I think I’m getting close. I will have tests done next month that will confirm if I’m ready to begin the thyroid treatment, which is very different than the thyroid treatment I’ve been taking for many years now. It’s possible those tests will show I’m not ready to start this new treatment, that I need to work more on the secondary issues, but it’s also possible that I’ll finally be ready to start something new and promising!

So every day I continue to read books that make it sound like this new treatment (or one of the alternative treatments) could do wonders for me. I participate in online patient groups where others talk about how much better they feel after just a few weeks or months (or sometimes even days) on this treatment, after getting off of the one I’ve been taking. I see what could be for me, and I want it so badly! It’s right there, sitting on my dresser. Literally. I filled the prescription already so that it will be ready as soon as I get the test results. (I didn’t want to take a chance of having any last-minute insurance issues or anything, so I filled it as soon as I got the prescription.)

Patience is a virtue that I’ve never had. Hey, no one’s perfect. We all have our faults, and mine is that I’m impatient. But this is a whole new level. It’s one thing to be impatient to get a new cell phone, try a new restaurant, or complete a project. But a return to health* would be HUGE! On the one hand, I’ve waited for years, so what’s a few more months. On the other hand, I’ve waited for YEARS so why should have to wait any longer? I’m ready to be done with the waiting part. I want to be on the doing something part. Sure, I’m doing something by researching and making plans, but I see that pill bottle sitting on my dresser and I’m so impatient to try it. Just try it. Maybe it will work. Maybe, a few months from now, I’ll feel better. Maybe I won’t be sitting home more days than I’m going out. Maybe I won’t have to turn down invitations to go out at night. Maybe I’ll be able to go back to work and earn an income again. Maybe I can feel mostly ok. Or maybe not, but I’d like to at least try.

So for now I’m waiting impatiently to at least try to improve. In 5 or 6 weeks I’ll have all of my test results and I’ll know, one way or another, if I’m ready to move on to this potentially exciting next step. Please send good thoughts my way – I need all the help I can get!

*Like I’ve said before, I don’t expect to ever be 100% healthy again, but I do think I could be much, much better than I am right now.

4 Comments | Decisions, Expectations, Fatigue, Frustration, Healthcare, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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