The trouble with sleeping late

June 29, 2013

I had another bout of annoying insomnia last night. This just started in the past year and it’s baffling. I wake up around 4am for no reason that I can figure out, then I just stay awake for a couple of hours before getting back to sleep. Then I wake up around the normal time, just deprived of sleep. It makes no sense to me.

Last night was different, though. After 2.5 hours of lying there awake, I finally drifted back off to sleep. But instead of waking up around 9 or 10 am, I slept until 10:42! I would have probably gone back to sleep, but seeing those numbers on the clock forced me to wake up. My pill schedule was all messed up! And of course it’s a Saturday, so I couldn’t ask my naturopath for advice.

First things first, I took my thyroid pill. That always happens as soon as I wake up. But then, 1/2 hour later, should I take my regular dose of Isocort? It’s an adrenal supplement, and the whole point is to take it at certain times of day based on my adrenal function at those times. My cortisol is low in the mornings, so I usually take it when I wake up (1/2 hour after the thyroid pill to avoid conflicts.) But should I take it at 11:15? That was too late! I compromised and took a half dose. I didn’t think it would be a good idea to skip it completely.

I had to wait a bit longer to eat, so breakfast was going to be around 11:30. Maybe I should just make that lunch. But wait, I have pills that I have to take with food 3 times a day! Ok, so I had a really small breakfast and took my breakfast pills, and I’ll have lunch around 2pm.

But wait! Lunch at 2pm means I can’t take my next round of adrenal supplements until 3pm and that’s too late! I’m supposed to take them around 2pm, but I have to wait an hour after eating before I take them. So ok, maybe I’ll move lunch to 1:30 and take the pills at 2:30. That’s not too bad.

And the fiber I’m supposed to take 2 hours after the breakfast pills and at least 1/2 hour before the lunch pills? Well, too bad. I’ll just have to take it closer to the other pills and so be it.

Before all the pills, if I slept late that just meant I started my day late. When did it become so damn complicated?

2 Comments | Decisions, Frustration, Limitations, Medication, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

And the insurance nightmare continues to wreak havoc with my life

June 19, 2013

I haven’t updated you on the insurance nightmare in a while. Sorry about that. I guess I’ve been trying to ignore it. And now that I think of it, it’s funny that I chose to describe it as a “nightmare,” considering how it’s been messing with my sleep.

For those who don’t know, the short version is that I left my job a year and a half ago when my health took a nosedive and I received payments from short term disability insurance. I expected to return to work long before that ran out, but my health was worse than I’d wanted to admit to myself, so I used up STD and then applied for long term disability. LTD denied me, so I hired a lawyer and appealed. The company’s response to the appeal was due more than 4 months ago, so of course they haven’t given it to me yet.

Now that you’re caught up to everyone else, here’s the latest: I still don’t have a response. The company wanted me to see an independent medical examiner (IME) and a field investigator. If I said no, they’d deny my claim. I guess they’re still looking for some way to deny me? I don’t know. I saw the IME. I met with the investigator. Both went well, I think, but it’s hard to really know.

Of course, both appointments were horrible and exhausting. Both involved local travel. Both were long, a combined total of 4 hours split over two days. And both were incredibly stressful. What if I said the wrong thing? What if they didn’t believe me? What if they thought I seemed to healthy? I need the money, but it’s also the principle! How dare they deny my legitimate claim! Especially when so many fraudulent claims go through. It’s just so wrong! So I had to make them understand.

When the time came for each meeting, though, it wasn’t hard to be convincing. I didn’t sleep well before each one. I was pale and puffy. The stress wore me out. By the end of each meeting, I was so fatigued that I had trouble focusing. I could barely understand what was being said. By the end of the second one, I was having trouble sitting up. How observant were they? Did they notice the way I rubbed various joints while I spoke? Did they see my twitching fingers? Did they realize that I didn’t stand up to say goodbye not to be rude, but because it took too much effort? I may never know.

I’m still in wait-and-see mode. I don’t know how long they will take to respond. I hope that it’s quick, because in a month and a half I will lose my health insurance if they haven’t made a decision. I suppose that’s a story for another day. Still, it’s all part of the same thing.

So instead of hanging out with wonderful friends tonight, including the one I mentioned the other day, I am home alone. Instead of having a fantastic time (because in our 20+ years of friendship, I don’t think I’ve ever seen them and not had a fantastic time,) I’m sad and lonely. Instead of feeling bad in the usual way, I feel much worse.

I need to get healthy. I need to get healthy so I can see my friends, date, and go back to work. And so that I can find a way to change this barbaric insurance system.

2 Comments | Fatigue, Frustration, Healthcare, Isolation, Limitations, Rants | Permalink
Posted by chronicrants

What’s “normal” tired?

June 8, 2013

This is Pride week in Boston. I love Pride! It’s such a fun holiday.  Unfortunately, I can’t celebrate as much as I’d like. There are great parties Thursday night, then the Dyke March on Friday followed by the Dyke March after party, and then of course the parade on Saturday. There are parties Saturday night, and then more events on Sunday. And earlier in the week there are dedications, movies, etc. It’s a fun time, but who has the energy for all of that?

Boston Pride

My parents came with me to the parade today for the first time. We all had a lot of fun. We walked around, watched the parade, then walked around some more. By the end I was exhausted. I wanted to stay longer, see more, listen to the music, see more friends… but my body said no. My parents were tired too. So many it was normal to be so tired?

Then again, maybe I shouldn’t be comparing myself to people who are 30 years older than me. Maybe I shouldn’t be as tired as a couple of 60+ people. I looked around at my peers. Many of them went to the festivities that I missed on Thursday night, as well as the Dyke March. They walked in the parade today. They plan to go to a party tomorrow. They’re a bit tired, but after some sleep they’ll be fine. They’re my age. Is that what I should be aiming for? Is that how I’m supposed to feel?

It’s been so long since I felt “normal” amounts of energy that I have no idea what to expect now. The last time I felt that, I was around 20, so I suppose I would have less energy now, in my mid-30s, anyway. But how much less?

I know it’s impossible to measure my own health or even my goals against the health and reality of others. But I also know it’s human nature to try and compare anyway, so I don’t berate myself for it. Still, is there any point? Will I ever be close to achieving that level of so-called normalcy? There’s no way to know. But I’d sure love to get even part way there.

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

Cutting up a cantaloupe

May 30, 2013

I’ve watched my mother cut a cantaloupe. She makes it look so easy! We’ll be in the kitchen, chatting, maybe snacking, and she’ll decide the cantaloupe is ripe enough to eat, so she’ll pull out a knife and quickly cut it up. Simple. I just cut up my first Cantaloupecantaloupe of the season and I can tell you, that’s not how it works for me.

My process starts at the store. After I decide that I want the cantaloupe, I do a quick body assessment. How are my wrists? Will I be able to cut it? How about my back, knees, toes? Will I be able to stand long enough to cut it? I’ve tried sitting, but it doesn’t give me enough leverage to compensate for my wrists. How’s my appetite? Will I be able to eat the whole thing? And cantaloupes  are heavy. Will I be able to carry it into the apartment? Next, I consider the weather. How hot will it be this week? Will it be too hot to spend time in my kitchen while I cut it up? Is the pre-cut cantaloupe on sale so I can buy that instead? Based on all of those answers, I may actually buy the cantaloupe.

Once it’s ready to be cut, I consider all of those same issues. Assuming I feel up to cutting it up, and my kitchen isn’t too hot, I pull out the cutting board and my good knife and I get to work. I go slowly. I have to be careful not to cut myself. After all, with brain fog, distraction, clumsiness, muscle kinks, and balance problems, it’s easy to let the knife slip. Some cantaloupe always ends up on the floor. So at some point I have to be bending over to pick up what dropped and to clean up the sticky spots, and that involves more aches and pains and use of energy. Afterwards, there are dishes to wash and a sticky counter to wipe down. The trash will smell soon from the rinds. It will also attract bugs. So I’ll have to take it out soon.

This time I was lucky. I got the entire cantaloupe cut up with only a few pieces dropped, only one nick with the knife that was too small to draw blood, and no major incidents. The trash will be dealt with later, but the cutting board and knife have been washed. I have some extra pain now, of course, but nothing too much worse than what I’d expect. So all in all, it was a success!

Not too many years ago, before I took Plaquenil, I couldn’t cut up a cantaloupe at all. This is definitely progress. It’s not as effortless as it seems to be for most people, but at least I can enjoy some nice summer cantaloupe.

12 Comments | Decisions, Fatigue, Frustration, Limitations, Pain, Rants, Symptoms | Permalink
Posted by chronicrants

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