New pains both literal and figurative

April 3, 2013

The thinking used to be, “That hurts! I better see a doctor.”

Now the thinking is, “That hurts! Damn! I hope it doesn’t last.” And I go on with my day.

Sound familiar?

I’ve been thinking about pain today. In the last couple of days I’ve started feeling pain in new  places. There’s my left elbow, and a specific spot on one wrist. That’s not good. Add to that old pain that’s gotten worse over the last few weeks. Then don’t forget the regular pain that seems to have new triggers that I haven’t figured out yet. And the fatigue and digestive problems have gotten worse too. Not good.

There are a few possible reasons for this new pain. It could be the change in season. It could be all of the added stress from the insurance bullshit that I’ve been dealing with. It could be that the universe is just cruel. Who knows? I sure don’t. But if I had to guess, I’d point to the stress.

That brings me to the other pain: the figurative pain in my ass. Almost two months after I expected a decision on the long term disability insurance appeal, I just received notice of a third delay. They did not give a reason at all. None. Really, I’m not kidding! They just said they couldn’t meet the deadline so they were setting a new deadline. I believed them the first time, but not now. And this comes just a few days after I was denied SSDI again. I knew the SSDI appeal would probably be denied, but when I saw that envelope, a little part of me hoped against hope that maybe, just maybe, I would be approved.

No such luck.

So now it’s April. My bank account is getting scary-low. I don’t know if I should be packing up boxes to move out of my apartment. If I need to move, I’d like to get started. But if I’m not going to move, I don’t want to squander all of that energy on packing – I’d rather use it on searching for doctors! Of course, searching for doctors is hard, because if I win the LTD appeal then I have one insurance and if I lose then I have another insurance. Some of the doctors I’m finding take one but not the other. How can I move forward with treatments when I don’t know which health insurance I’ll have tomorrow, next week, or next month?

So yeah, LTD and SSDI are a huge pain in my ass.

It pisses me off more when I hear stories about people fraudulently getting money from the system. How do they do it? How is it that healthy people are getting approved and I’m not? I really don’t get it! What are they doing? They could probably make a lot more money by helping legitimate applicants like me apply in such a way that we’d get benefits. If they can do it, why can’t I?

I’m tired of justifying myself. I’m sick. I look healthy. Both are possible at once. Get over it.

So this adds up to a whole lot of pain in my life. The figurative pains in my ass are translating to literal pains in many other places. I can only hope this all goes away soon. Before I lose what’s left of my patience and my coping abilities.

11 Comments | Expectations, Fatigue, Frustration, Gastrointestinal, Healthcare, Isolation, Limitations, Medication, Pain, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

The worst scream I’ve ever heard

March 21, 2013

It was the scream that woke me up. It was a horrible sound, full of pain.

It’s odd the way your brain notices things. First I realized I was sitting up in bed in the middle of the night. I heard the screams. Then I realized the screams were coming from me. And it was after that that I noticed the pain. Of course, this all happened in
a just a couple of seconds, but I definitely figured out the screams before I noticed the pain, and that surprised me.

I looked to my open bedroom windows and wondered if I’d woken anyone up, even as I put all of my effort into not screaming again. I had a firm grasp around my knee and there was nothing else to do but wait.

I don’t know what this is. It started happening about two years ago. It only happens occasionally, maybe once every 3 or 4 months. It only happens during the night while I’m asleep. And it’s excruciating. Unfortunately, I think it’s been getting worse. I don’t usually scream. Or even sit up. Whether it’s worse or not, it’s still just as mysterious. My naturopath and rheumatologist are stumped. When I told my father today, he asked if I’d seen an orthopedist. With all of my other problems, it never occurred to me to do anything about my knee locking up in my sleep. It’s horrible, but it’s rare, so why bother? Still, I’d like it to stop. Maybe seeing an orthopedist isn’t the worst idea.

It was around 1:15am and I was cold. The windows were open and it was probably 20 degrees outside. I like sleeping in a cold room. But I couldn’t lie down. I couldn’t even move a hand to pull up the blankets. I had to hold onto my knee because if it moved a bit in any direction, the searing pain would just be too much. After more than 20 years of chronic pain, this was the worst I’d ever experienced. The memory of that initial pain has been haunting me all day. But at that point, I just wanted it to go away. Then I was aware that I had to go to the bathroom. There was no way I could get off the bed, though.

After about 20 minutes, I still couldn’t unbend my knee, but I could shift my body a few inches and reach into my night-table drawer. I pulled out the cream that my naturopath had given me months ago for this very problem. I rubbed it on gently and waited. It didn’t help. I waited longer. When enough time had passed, I decided to make my way to the bathroom. I knew it would hurt, but some things can’t wait. I hobbled over, managed to sit, and was thankful (not for the first time!) to have the sink right next to the toilet so I could lower myself and pull myself up without putting as much pressure on my knee. Standing to wash my hands was hard, but I managed it, then I made my way back to the bed. [Note to self: make sure next apartment has bathroom right next to bedroom again.]

After a while I felt into a fitful sleep. I had weird dreams. I dreamed about Downton Abbey. I just watched the first season this week and it was in my head. I think my brain was mostly trying to not think about my knee. I dreamed about the email I would write to my friend, canceling today’s plans. I dreamed things that made no sense at all. And I dreamed about pain. I woke up too often, but at least I did get some sleep. I managed to keep my knee straight. Every time I shifted, it hurt. I wanted to roll over, but gravity’s effect on my knee was too painful. It was a lousy night.

I knew what to expect in the morning. Each time this happens, my knee hurts a bit the next day. I stay off my feet, and the following day it’s fine. I hated to cancel my plans for tonight, but they involved walking to the T, riding the T, and then sitting in cramped theater seats for a while. It was unlikely my knee could handle it, but I held out some hope. For some reason, though, my knee wasn’t just achy today, like all those times before. Today it was painful. Really painful. I’ve spent little time on the computer, because it hurts to sit in a chair where my knee can’t be straight. I mostly sat on the couch with my leg up today. But no matter where I was sitting, even with a brace on it, all would be good for a bit, and then WHAM! PAIN! It’s disturbing, and it’s one of the reasons I know this is getting worse.

It was a frustrating day. I couldn’t do my errands, of course, but I also couldn’t do things around the apartment, like laundry. It was a day of reading, tv, reading, tv, tv, reading, and tv. On the other hand, the pain has been a nice distraction from my other recent problems, so I guess that’s a silver lining.

Over the years my pain has come down on the pain scale. I’ve been thankful for my 2s and 3s. I’ve been glad my 4s and 5s weren’t worse. And today, as I keep feeling twinges of 5s, 6s, and 7s, I keep remembering last night’s 9.5 and I hope I don’t experience that again any time soon. And I wish none of us ever would.

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

Following the gray

March 7, 2013

I thought my last post was a day or two ago. I was shocked just now to see that it was THREE days ago!

This is a bad, bad, bad day for me. Boston has been getting a lot of rain and snow, which I don’t mind too much (as long as thePhoto 3 snow isn’t enough to require shoveling.) What I do mind is the lack of sun. Even on the days without precipitation, there’s no sun! A few times I’ve woken up to see some blue sky out my window, but I can only see a sliver from my bed, by the time I get up an hour later, it’s gone. A day or two ago (I really can’t tell the days anymore) I saw some blue sky. It was so exciting! I had thought about taking a walk, and that gave me the push I needed. I walked a few blocks and back, then found a place to sit. It was too cold to sit still, but I did it anyway for as long as I could because there was blue sky! It really helped. Unfortunately, the sun was behind the clouds and sunset came less than an hour later. And that was the last time I saw blue sky.

When I was a kid, I knew I didn’t like the early sunsets in the winter. I knew it, but I didn’t know why. It wasn’t until much later Photo 1that I realized it was a seasonal thing. And the first time I heard of seasonal affective disorder (SAD), it just clicked. I suddenly knew why I became grumpy every October, and bitchy by November. And those manic days at the start of spring made sense too.

I’ve been feeling it getting worse every day. Last week I felt so lousy from a resurgence of symptoms that I didn’t leave the house for three days. Those were the sunny days, of course. Since then, I’ve been dealing with SAD, the worse symptoms, and the latest round of insurance bullshit. Add to that concern over 5 ill family members (yeah, it’s been an odd week), uncertainty over my immediate future (thanks to the insurance crap,) and the loneliness of sitting home by myself while my friends are all at work, and you can begin to understand why this hasn’t been the greatest week for me.

The gray weather can’t last forever. That’s what I keep telling myself. This is a long stretch, even for Boston. The sun should be out on Saturday. I have no plans for that day, but I sure hope to be outside. A lot. In the sun. Enjoying every minute of it as much as I can. The rest of the shit will still be in my life, but I have a feeling it won’t be nearly as bad when the sun comes out. I just hope it comes out soon.

2 Comments | Frustration, Isolation, Rants, Symptoms, Unpredictable | Permalink
Posted by chronicrants

One day at home too many

February 21, 2013

I used to stay home when I didn’t feel up to going out. These days I stay home when I have no place to go. Ok, and also when I don’t feel up to going out. But it’s the having no place to go that really bothers me right now, because I feel up to leaving, but I stay in anyway.

Tuesday was a busy day. I sat in a coffee shop, had some tea, and read a book. Then I took the longer route home, so I got in some extra walking. After lunch, I picked up groceries, then I saw my naturopath for a brief meeting. That would have been plenty for one day. But just as I was getting ready to head out for the groceries, I got a text message from the guy I’m sleeping with. He wanted to know if I was free that night and if I could stay over. Sleepovers are rare for logistical reasons, but the stars aligned and he thought it would be a nice surprise. So even though I knew it was too much, I went. I drove 45 minutes in the pouring rain and arrived exhausted (but quickly got a second wind when he kissed me.)

After sex it was still early, so we curled up in the living room and read for a bit. I headed to bed feeling nice and sleepy – between the busy day, the orgasms and the reading, it was definitely time for some sleep. But I’m not used to sharing a bed with anyone, much less with two people. Well, actually it was one person and one dog, but the dog is the size of a small person, and she hogs much more of the bed. And the bed is too soft (I had a wicked backache the next day.) And the pillows are too squishy (my neck is still a bit sore – next time I’ll bring my own pillow.) And the room was way too warm (I sleep with my windows open, even this time of year!) And D gets up to pee at least a half dozen times a night. And the dog repositioned herself during the night to take up even more of my space. So I didn’t get much sleep. When I did sleep, I slept deeply, but there wasn’t too much of it.

And then I woke up way too early. Normally at that hour I’d have gone back to sleep, but I had a partially naked guy next to me and a high libido, so I started something and he gladly gave up on sleep too. It’s a good thing I started it when I did – he barely made it to work on time. And when he left, I could have gone back to sleep, but what was the point? I just wasn’t sleeping well there. So I showered with him and got dressed, and despite his offers I decided not to eat breakfast there. I just hopped in the car and drove home. I made great time, but hit rush hour traffic two miles from home and that slowed me down. The drive took an hour. I dropped my stuff in the bedroom and then headed for the kitchen for breakfast. At an hour when I’d normally be in bed, I was showered, dressed, and eating. And exhausted.

So that’s how I ended up spending all day Wednesday at home. I figured I could push myself to go out, but what was the point? And I hadn’t made any particular plans anyway. I knew was going out Thursday (today) and I wanted to be rested. Between the lack of sleep and the more-than-normal activity and exercise of the previous day (and that morning) I figured a day at home would be good.

And it was. I read and watched tv, cleaned up around the house a bit, and generally relaxed. It felt great.

I slept very deeply last night and felt pretty decent today. I was ready to go out! Unfortunately, the person I was going out with didn’t feel as well and we agreed to put it off until tomorrow. Luckily, everyone involved is free then. But suddenly, I had no plans for today. My friends were all at work. My family was either at work or out of town or part of the plans that fell apart. There was no place I needed to be.

I spent another day at home reading and watching tv and reading more. In the evening I finally took a walk. I hadn’t left the house since I got home from that overnight, about 33 hours earlier, and the fresh air felt good. Still, it wasn’t enough. I didn’t see anyone. I didn’t do anything worthwhile outside of my own little world. I felt lonely.

This is one of the many things that’s hard to describe to people. No, I don’t feel up to working, because I have too many days like yesterday. And even on a day like today I probably couldn’t work for a full 8 hours. On the other hand, I need something to do, a reason to get out of the house, to see people, to socialize, to share. Just not every day, because that would be too much. They don’t get it, because they take these things for granted. But I know that at least some of you reading this know exactly what I’m talking about.

This is the part of the feel-good-happy-ending movie/tv show/book where I offer some profound solutions to this problem. But this is real life, and in real life I’m not sure what to do about this. I make plans to get out as much as I can, or to at least make sure I don’t have too many days in a row at home. If I have free days, I try to buy groceries or something. I knew I had no plans for Wednesday or Friday this week, but I had at least one thing for Monday, Tuesday, Thursday, and Saturday, so I figured that would be enough. And when Thursday fell through there was no way to quickly come up with a replacement. If you have any ideas, I’d love to hear them. In the meantime, I’m just glad that I have enough interests that I don’t spend all day watching tv. Still, I’d like to spend fewer hours inside these walls.

2 Comments | Educating, Fatigue, Frustration, Isolation, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Unpredictable | Permalink
Posted by chronicrants

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