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

I’m tired of defending myself against bigots

June 25, 2013

The disability insurance company is trying to prove I’m not really too sick to work. Social security is trying to prove the same thing. My sister apparently has similar thoughts. Medicaid is doing the same thing. And many doctors over the years have thought it was all in my head or that I was exaggerating.

So many people, more than I want to think about, seem to think that I’m not doing enough to get better. They think I should be seeing different doctors and taking magic pills so that I’ll be perfectly healthy.

The Supreme Court is due to hand down decisions on Prop 8 and DOMA this week. These two cases regarding same-sex marriage will change the lives of many people close to me. They will change my life too. If same-sex marriage becomes more commonplace in the US, people will become more accepting of it. I have no doubt of that. And that would make things so much easier.

Even within the LGBT community, so many people say that bisexuality doesn’t exist. Bisexuals aren’t real. They talk about “gay marriage” as if same-sex marriage only affects the gay and lesbian communities.

For the first time in a long time, someone said an anti-semitic slur to me today.

Strangers seem to think it’s ok to call me “honey” or “sweetie” in a diminutive way. People often assume I’m not good with math or with computers. They assume I can figure things out in logical ways. When I get upset, people have suggested that it’s “just my hormones.” They make it clear that my thoughts, feelings, and abilities are less valid to them because I am a woman.

I’m so tired of defending who I am. I am me. That’s it. End of story. So if you have a problem with people with chronic illnesses, or with bisexuals or Jews or women, or with a member of any other minority group, you should think about what’s wrong with you that you think you have to be better than everyone else. Then take your nasty thoughts and keep them to yourself.

4 Comments | Educating, Expectations, Frustration, Insensitive, Rants | 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

Those three magic words: “I believe you”

June 12, 2013

I saw a new doctor today and now I’m beyond exhausted. Sitting up is unpleasant. I feel like my whole body is screaming at me to go rest on the couch with the tv and some popcorn. And who am I to deny my body what it wants? So this will be short.

The doctor I saw specializes in hard cases. He also sees a lot of patients with fatigue. Still, I was doubtful, and I think he could tell. He asked a lot of question – the most thorough questioning I’ve ever received (and I’ve received quite a bit!) At one point he asked if I ever get pins & needles anyplace. I said yes, and told him where. Then he asked if any of my doctors had ever addressed it. I was shocked to realized I hadn’t discussed it with them. Well, I had told one, but he said it was nothing. This guy disagreed. I tried to explain that I always filter what I tell doctors, trying to focus on the biggest issues, so they don’t think I’m a hypochondriac or something. He immediately understood, and said that he knows it’s common for patients to be ignored if they mention too many symptoms. It was amazing! He got it!

But there was one thing that wowed me more than any other. More than once, he uttered those three little words that every patient with a hard (or impossible) to diagnosis illness wants to hear: “I believe you.” I can’t tell you how amazing that felt. Here was a doctor who had read a 2-inch thick pile of my medical records, listened to my story once, and believed me! I don’t think this has ever happened to me before! Sure, I’ve had doctors believe me, but usually I don’t know that they believe me until after several visits, or maybe months or years of treatment. I know that my parents believe me. So do some friends. Other so-called friends (now ex-friends) did not believe me. Employers did not believe me. Strangers did not believe me. And yes, doctors and other medical professionals did not believe me.

I don’t know if he saw my tears. I didn’t want to call attention to them, but I didn’t want him to think I was upset. I was just so relieved! He believed me. He believed me. THE DOCTOR BELIEVED ME!

Since this is a short post, here’s a related bonus. I am so sick and tired of trying to convince people that my illness and disability are real. I am also tired of trying to convince them that ableism is real. Same with sexism and biphobia. So while this article is about sexism, I think it can be equally applied to all of the other -isms. I’m looking for justice and equality. I am happy to educate the uneducated. I will not tolerate the hateful.

2 Comments | Educating, Expectations, Fatigue, Frustration, Healthcare, Isolation, Milestones, Pain, Raves, Support, Symptoms | Permalink
Posted by chronicrants

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