And then I woke up

July 14, 2013

I’ve been feeling relatively good lately. A couple supplement changes have resulted in more energy, and the recent break in heat and humidity have allowed me to go outside, which greatly helps my mental and emotional outlooks. It’s been really fantastic.

That’s why I was so happy yesterday. I managed to go to a potluck picnic. It was cool enough that I felt ok being outside despite the humidity. I spent time with friends. I laughed and had fun. I was there for 3 hours, which felt like a long time. I wanted to see another friend afterwards but I was tired, so I went home and watched a movie. All in all, it was a great day and I was happy.

Then I woke up this morning and I felt lousy. My throat hurt, a sure sign that my thyroid was acting up, and I had that run down-dragged out feeling. I had gotten up to go to the bathroom around 5am, and that’s when my throat first started to hurt. Maybe it was the heat, maybe it was the lack of sleep, but my body wasn’t happy. When I woke up at 9:30, late even by my standards, it was worse. I wanted to go back to sleep. I just felt miserable.

I knew immediately that I’d be skipping the brunch I had been looking forward to attending. It was already late, I definitely didn’t feel up to rushing, or even moving at a medium speed. Plus, it would involve talking to a lot of people I don’t know, which would mean acting like I felt ok even though I didn’t. No way I’d be doing that. And then I though about my afternoon plans. I’d been feeling so good lately that I ambitiously made plans to do two things in one day. So much for that. I just hoped I could keep the afternoon plans! And what about my plans for tomorrow? That’s something I’ve really been looking forward to for a while, so I hope I don’t have to cancel! And later this week I’m supposed to do something with a friend, it’s our one and only chance, so if I cancel, we won’t be able to reschedule.

And then I took a step back. Yes, I feel horrible today. Yes, I could be getting sick and I could spend the next week in bed. But it’s also possible that this is a short-term reaction to something and that I’ll feel better tomorrow. Who knows? That’s one of the annoying-as-hell aspects to these kinds of illnesses: they’re entirely unpredictable.

So for now I’m waiting and hoping. I still haven’t decided if I’ll see my friends this afternoon, even though I’d have to leave my house in just 2 hours. They’ll understand if I can’t make it. I’m definitely skipping the brunch today. And I can decide on everything else later. I just wish I could go back and change that feeling I had when I woke up.

Leave a Comment » | Expectations, Fatigue, Frustration, Isolation, Limitations, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

Lessons in limitations

July 1, 2013

I’ve been trying to convince myself that, if need be, I could do some part time work. It wouldn’t be much, but maybe a few hours every day. It would be something I could do from home, something computer-based. And then I got a reality check.

The other day I started a new blog. I’d been thinking about it for a while and I finally took the leap. This blog is about 2 years old and I’d forgotten just how long it took to set this up. Also, I was in much better health when I set this up. Hell, I was even working full time!

I set aside lot of time and I got to work. I signed up a domain name, and got the basic site set up. I created an email account to use for the work associated with the site. I signed up for a Twitter account related to the blog. Every time I signed up for something new, I had to confirm it through email. I had to make sure it all connected. I spent some time finding just the right look for the blog. I chose an avatar to associate with the blog account, the email account, and the Twitter account. I wrote the “About” page. I really wanted to write my first post, but I just didn’t have the energy.

In the end, I spent more than 3 hours working on my new blog. I got it all set up and ready for my first post. Well, it was mostly ready. There are some security things I still need to do and some other small items to take care of. But it’s mostly done. And by the time I got to that point, after 3 hours of work on the computer, I was mentally and physically exhausted. I was worn out. I was in pain. I’d had it. All I wanted to do was lie down. My eyes hurt, so I figured it would be good to read a book for a bit. I only read 2 pages. I was too tired to read.

So I learned a lesson. As much as I want to think otherwise, I’m not ready for a job, even a part time one. Sure, I spend lots of time on the computer now, but it’s broken up into small bits and it’s mostly reading. Being more actively engaged and sitting for so long was just too much. I’m not ready.

I just wish the insurance company and social security would read this.

3 Comments | Expectations, Fatigue, Frustration, Job, Limitations, Pain, Rants, Symptoms | 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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