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

A letter to my disability insurance company

March 28, 2013

Dear Assholes,

To begin with, I am a living, breathing, feeling human being. I know that may be hard for you to believe, but it’s true! I have thoughts and feelings, just like you. Well, not just like you, per se, but like most human beings.

Next, let’s consider that I am very sick. And remember that stress makes my illness worse. And not having a source of income while also dealing with you and with lawyers is very much a stress-inducing situation.

Now, let’s look at our goals:

  • My main goal is to get my health back. My secondary goal is to get you to give me the money you owe me so that I can pay my rent and, importantly, pay for medical treatments that aren’t covered by health insurance.
  • Your main goal is to save money by never paying me. Failing that, your goal is to save money by getting me to go back to work so that I no longer need your payments.

Please correct me if I’m wrong about your goals, but for the sake of this letter, let’s assume they’re true. First, are you really saving money by denying my claim? In this process you are paying staff to handle the matter, lawyers to handle the legal aspects, and doctors to review my files. My guess is that many of these people are paid at a high hourly rate. Are you really paying them less than you would be paying me if you had just approved my claim to begin with?

Next, you want me to work. If I work, you don’t have to pay me. From my file, you should see that I want to work also. I have a solid resume. I have held multiple jobs in the past, even while suffering from chronic pain. I have worked almost non-stop (except for school) since I was 14. When my symptoms got worse in 2011, I tried to continue working past when I was really healthy enough to do so. I continued because I wanted to work. So of course I’ll return to work as soon as my health allows it. This means that our goals now align: you want me to be healthy enough to work and I want me to be healthy enough to work.

So how do we get me healthy enough to work? Well, I am pursuing various treatments. There have been three things that have slowed me down which you can help to improve:

  1. When I lost my health insurance, that slowed things down. I had to skip seeing doctors. I couldn’t pursue treatments. I had to stop taking a vital medication for a month, then spent another month recovering from the affects even when I resumed taking it. Gee, thanks for taking away my health insurance.
  2. Money is an issue. There are tests I would run and medications I would take, but I can’t afford them right now. If you had given me the payments you owed me, I would have done these things.
  3. Stress is very bad for me. It has been preventing my adrenals from recovering from my adrenal fatigue, and that in turn has worsened my thyroid problems. In fact, just in the last few months, since you jerked me around by delaying your decision on my appeal, my TSH has jumped from way too high for me to way too high for anyone. Stress has increased my fatigue and my pain. Stress has prevented me from making any strong strides towards improvement. Of course, I only have two sources of stress in my life right now: my health problems and this insurance mess. Why is this insurance mess causing stress? For a few examples, I don’t know if I can renew the lease on my apartment. I don’t know where I’ll be living in a couple of months. My bank account is almost empty. I have spent years and years of savings. I can’t go out to eat with friends, go to a museum, see a movie, or do most other social things, even on the rare days I feel well enough to do so. I’m not sure if I should be selling my car (but how I would I get to doctors?) or get rid of my cell phone. I don’t know if I should be applying for Section 8 housing. These are major issues that are in limbo, and have been in limbo for a long time. Oh, yeah, and I haven’t been able to file my taxes yet!

Let’s see how you could help:

  1. Approve my claim and I’ll once again have steady health insurance coverage.
  2. Approve my claim and I’ll have enough money to run all of the tests I need and to take all of the medications that might help me.
  3. Approve my claim and my stress will go away almost completely. My adrenal glands can recover, and then we can treat my thyroid directly.

You see, if you would just treat me with some decency and respect, if you would approve my claim and meet your deadlines, if you would communicate with my lawyer so that I know what’s going on, then we would all be happy: I could get health and go back to work, and you could save money.

Now ask yourself: why aren’t you doing it?

Not-at-all-sincerely,

                 A pissed off patient

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

A cathartic cry and Mom

March 20, 2013

It’s not like I haven’t thought about writing in the last two weeks. I’ve actually wanted to write here more than that one post. But I just couldn’t.

Last month I wrote about the latest disability insurance bullshit. After that delay, I got a bit depressed. I wasn’t thrilled about the depression, but I also wasn’t worried. I’ve experienced it before. It wasn’t too bad, and I knew it would go away once the insurance stuff got settled.

Cathartic Cry

Then last week I found out about a new delay. Now it looks like I should have an answer in April. Maybe. I had just gotten the notice from my landlord saying that I had to either renew my lease or give them notice. I had just gone to the bank to change my accounts, because I can no longer meet the minimum. All sorts of other things depend on this insurance decision. And it was delayed. Again. Still. More.

I was really depressed after that. I cancelled plans that I had been looking forward to for a long time, and I sat home alone in my apartment. I had no desire to go outside. I didn’t want to do anything. I dreaded seeing my friend the next day. She didn’t know the whole story. I didn’t want to explain it. I couldn’t explain it. But I also couldn’t have a happy, cheerful, pleasant visit.

Then I thought more about the way the insurance assholes are treating me like shit. They’re acting like I’m not a real person. They’re taking away from my focus on my health (ironically!) My health has suffered because of the stress of this. I was just starting to make real progress, and this bullshit has led to a backslide.

And I suddenly knew I needed to cry. I had to get it all out. I called the one person I really wanted to talk to: Mom.

I got her on her cell phone. She was on her way to a nice dinner party, so I tried to tell her we could talk later, but she heard it in my voice. She insisted we talk. What a mom! I sobbed on the phone to her for a long time. Yes, these were full-out sobs. I told her my frustrations, my anger, my fears. She listened and somehow she said all the right things. She supported me.

After that call I felt much better. It was the first time I’d cried about this insurance crap, and I really needed it. I was exhausted, but I felt lighter. I spent the night relaxing, and I chose a light-hearted, fun movie to watch before crashing early. The cry had really worn me out. The next day, I cancelled the long-awaited plans with my friend, and instead spent the day with my mom. The sun was out for a change, and we took a long (well, long for me) walk in a park I’d never been to. Fresh air, sunshine, trees, a pond, and dogs really cheered me up. Best of all, my mom is my best friend, and it was great to talk to her. Back at her place, we talked a lot. I helped her clean out her desk, which made her thrilled and made me feel useful and productive for a change. We had dinner with my dad, and then the three of us sat around talking about all sorts of things that had nothing to do with my health or with insurance. Like “normal” people. It was relaxing and lovely. I left their house feeling like I could handle things again.

I won’t say that my depression is gone, but it’s a hell of a lot better than it was a few days ago. Sometimes all it takes is a good, cathartic cry. And mom.

3 Comments | Expectations, Frustration, Isolation, Kindness, Limitations, Raves, Support, Symptoms, Thoughtfulness | Permalink
Posted by chronicrants

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