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

It feels great to do ANYTHING proactive!

April 5, 2013

I’ve been a proactive person for as long as I can remember. Sure, I procrastinate a bit. Ok, I procrastinate a lot. But when it counts, when it’s important, when I care, I really get things done.

In my personal life, I get things done. When the cable company wasn’t fixing my service, I called them and hounded them until it was fixed (and I received multiple apologies from them!) When I needed medical paperwork at school or at work, I always took care of it; even in middle school, I was careful to get notes from my doctors so I would be excused from gym class and in high school I took care of special arrangements for a non-standard SAT test and got note-takers in my classes. You name it, I did it. Even as a child, my parents knew I’d take care of everything and never interfered at school or at my jobs. They were there for advice and support, but I was the one who did everything.

In my professional life, I was even more efficient. Just watch a vendor try and stiff me on a service or not meet a deadline! One particular staff member had trouble meeting deadlines, so I broke down projects for her and sent reminders for each piece well in advance on their due dates. When something broke, I got it fixed. I got out ahead of problems and stopped them in their tracks.

I like being in control. I like taking steps to get things done. And that’s why it’s so hard to not have any control in my current situation. Of course there isn’t a ton I can do to control my health. I do what I can, but it’s limited. I want to see certain doctors and try certain treatments, so I get frustrated at financial limitations. But I’m trying. With the disability insurance, though, I’ve been completely stuck. If it was up to me, I’d call the insurance company every single day and bug the hell out of them until they approved my claim just so they could get rid of me. Unfortunately, I have to rely on my lawyer to work with them. I sit and wait and then wait some more. I get notices of delayed decisions and can’t call them up to find out why on earth there’s a delay. It’s infuriating.

So it’s no surprise that I found myself in a fantastic mood a couple hours ago. I spoke to my lawyer yesterday about the latest delay, which I found out about earlier this week, even though it took place more than two weeks ago. We discussed my lack of options. There’s no regulatory agency. Calling the attorney general won’t help. Calling my senator won’t help. Calling the company isn’t an option for me, and she already left a message (which hasn’t been returned!) Suing is my only option, and it’s likely to fail. They know there’s nothing I can do, so I asked my lawyer why on earth would they bother to do it at all? Why not just delay another 6 months? After all, even if they approve me, they do not owe me any interest or reimbursement for costs I’ve incurred. So why wouldn’t they continue to delay it? My lawyer had a good answer: to keep their clients happy. They don’t want to piss off my employer (well, former employer) by denying every claim that’s submitted. That gave me an idea: what if I called my employer’s benefits person and told her what was going on? My lawyer didn’t object.

And that’s how I found myself finally doing something useful today. After 2 days of phone tag, the benefits person and I finally spoke. The call was short, under 10 minutes, but it was enough. I told her my story and she was concerned. She took notes. She asked the right questions. She expressed sympathy for my situation. And then she said she’d email the insurance company to find out if the latest internal deadline of theirs was met. She warned me that they wouldn’t give her an answer because they would only give that to my lawyer. However, she felt that by asking the question, they would realize they were pissing off their client and would move their asses on my case. Ok, she put it in more professional language, but that was the idea of it. She promised to get back to me next week when she heard from them.

This may have been the push that changes everything. Or it may accomplish nothing at all. But at least I did SOMETHING to help myself. After so many months of just waiting, it feels great to do something to potentially move things along. I just hope it works!

4 Comments | Expectations, Frustration, Limitations, Milestones, Politics, Rants | 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

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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