Remembering that my body has “normal” problems too

April 18, 2013

I have a high pain tolerance. I guess it’s necessary when you live with chronic pain. That’s probably why I barely noticed yesterday when my knee hurt and I found myself limping a bit. And yet, ripping the tape off my arm after a blood test today was terrible. I hate doing that! Sometimes it’s those little, everyday things that make me pause and remember that despite all of my illnesses, I still have a non-ill body too. And yesterday was a great reminder of that.

After a long break, I had a sex date yesterday. I wrote before about my sexual relationship with D. We’re friends, too, so we’d been texting and emailing, but due to personal problems on his end, we stopped sleeping together for a bit. After more than two months, we were finally going to see each other again! I was so excited. I picked out what to wear. I thought about fun ways to greet him. I indulged in lovely fantasies. (By the way, that’s a great way to pass the time when you have no job to go to.) I considered my health. I made sure to get lots of sleep. My pain levels were ok, and so was the fatigue. The long-lasting cold (thanks to my malfunctioning immune system) was finally over. I was ready! The big date day finally arrived…. and so did my period!

When you’re dealing with unpredictable chronic illnesses, there are so many things that can go wrong. I’m constantly on the lookout for those. Sometimes they affect my plans and sometimes they don’t, but I always try to be prepared. It just never occurred to me to prepare for anything so mundane as my period, something that could affect even “healthy” women.

In the end I was lucky. D isn’t squirmish and told me to do whatever I felt comfortable with. Thankfully, due to the hormones I take for PCOS, my period is very light (though not entirely predictable.) It dampened my libido a bit, but not enough to ruin things. We had a great time and, aside from some sleep deprivation, I feel great.

Now I need to remember the lesson I just learned: even sick people can have non-sick problems. Strange but true.

3 Comments | Educating, Expectations, Frustration, Limitations, Rants, Relationships: Family & Friends & Dating & Sex, Symptoms, Unpredictable | Permalink
Posted by chronicrants

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

How dare you judge how I treat my pain!

March 26, 2013

This has been a very bad pain week. I have a guess about why things are so bad, but it doesn’t help me to fix the problem. On our lovely pain scale (we all know that scale, don’t we?) I had a lot of time at 2s and 3s for a while. Lately it’s been at 5s and 6s. I can handle that. I don’t like it, but I can handle it. But when it was getting into the 7s and 8s and 9s and disturbing my sleep for several nights in a row, something had to change.

Two nights ago I slept for only 4 hours, and it wasn’t great sleep. The pain woke me up often before getting so bad that even dozing was impossible. Long before dawn, I lay in bed and knew I wouldn’t be sleeping again that night (morning?) I thought about getting painkillers. I take them very rarely because I don’t like the side effects. I take them so rarely that my last set expired ages ago and I’d thrown it out. When their office opened, I could easily call my doctor and have a prescription sent to my pharmacy, but did I really want those side effects? And let’s face it, it only helps occasionally and minimally. I really hated that idea.

Some of you may know that medical marijuana was approved in my state in last November’s election. I’ve written my views on it before, and they haven’t changed. So you may think this is a good option. Unfortunately, the regulations have not yet been written by the state group in charge, and probably won’t be for several more months. Without regulations, doctors won’t prescribe it and there are no dispensaries to sell it. Still, what other options did I have?

Around 5:30am I was exhausted, in pain, and really pissed off at my body. First I emailed one of my medical practitioners and asked if the prescription painkillers would interfere with any of my current meds or supplements, just in case. Then I emailed a friend and told him about the horrible pain. I asked him to put me in touch with a friend of his who sells pot. I was going to write to a few more friends who might be able to help, but I was just too tired and in too much pain to type. I figured I’d write to them later.

The doc wrote back that I’d have to discontinue a couple of things but that it wouldn’t be a big deal to take those painkillers. But I still didn’t want to take them. I dreaded it. Then the friend texted me. We spoke on the phone and he said he had what I needed and would give it to me for free because it was a tiny amount. He wasn’t kidding – the scale had trouble registering it. Even with the plastic bag it was barely a gram. But it was enough to see if it would work.

I knew I wouldn’t go to jail for this. Even if I wasn’t protected by the medical marijuana laws, marijuana was decriminalized in this state a while ago. At worst there would be a fine. But there’s still the stigma. I told a couple of friends, though. People joked about it, not understanding that my goal wasn’t to get high, just to get away from the pain, and that it sure as hell wasn’t a funny situation to me.

The thing is, I can’t smoke. My lungs just won’t go for it. So I have to eat it. I looked up online how to cook it, then went through the process. The last time I ate it, I got really paranoid (but it got rid of the pain!) Of course, it turns out that what I ate was incredibly strong and I didn’t know. This time I was dosing it myself. I did about half of what I figured I should, and just hoped it would work. Thankfully, it did. I didn’t really get high. I was a bit mellow and smiley, but that was it. The amazing part was that I wasn’t in pain! I walked down a few stairs and it didn’t hurt! I held the tv remote in my hand, and it didn’t hurt! And then the best part: I slept! I slept deeply for about 9 hours and it felt great! I slept without noticeable pain. Today, I feel like a new person. Sure, I’m in pain, but I feel a lot better just from having slept. I won’t have more pot today because, really, if I took it whenever I was in pain, I’d be on it all the time. But if the pain gets worse, if I can’t sleep, then I’ll have more in a day or two. And at least I know it’s a decent option with no unpleasant side effects.

The interesting thing was when I told a friend about it this morning. She’s no stranger to pot. She smoked a bunch of times in college, and always thought it was weird that I didn’t try it until much later, in my late 20s. But as she’s gotten older, she’s gotten more conservative. She made a face (you know the type) and said how she’s not so sure about this whole medical marijuana thing. It’s not safe. It’s addictive. It shouldn’t be legal.

I was shocked. I pointed out the supposed safety of prescription painkillers. And their levels of addiction. And their side effects. She stopped talking, but I don’t think I convinced her; I think she just knew she was wading into dangerous territory. It’s one thing to suggest a better treatment, but dumping on the best treatment method I’ve found for myself? She knew I was about to get very pissed off. So she backed off. But now I wonder… should I try to make her understand? Because if she’s judging me, she may judge someone else. And she won’t speak up when she hears someone else making the same judgments.

I get very angry when politicians make these judgments, and it’s just as bad, or maybe worse, coming from friends who should understand my situation. I am not hurting anyone. But by denying a treatment, they are hurting me. How dare anyone judge how I choose to treat my pain? Especially when they themselves are not experiencing pain every single damn day of their lives. How dare they?!? If they have a headache, how will they feel if I take away their Tylenol? For that matter, what if I took away something that’s really not all that helpful or healthy but widely used, like coffee? Let’s make coffee illegal on the basis that it’s unhealthy and addictive, and then let’s talk about how people make decisions for their health. I bet a lot more people would be saying it should be a personal choice. Well, if coffee should be a personal choice, then so should medical marijuana.

At the end of the day, this is my body. It’s my pain. If I can lessen the pain in a way that won’t hurt anyone else, then why on earth would that be a bad thing? And what would give you the right to judge me for it?

2 Comments | Decisions, Educating, Fatigue, Frustration, Medication, Pain, Politics, Rants, Symptoms | 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

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