This and That

For one month my medication costs were just under $1600. With my new insurance, I only paid $6.25.

Enbrel is the biggest expense. It runs a little $1500 a month, but I now only pay $3.1o. It’s still hard to get used to.

Also, I’m almost out of visits from my home health physical therapist. My right knee went from a 31 degree angle to a 22. And my left leg went from a 29 to an 18. They don’t look any differently though……

I walked across my apartment 3 times in a row on the last visit. Also, my balance is getting much better. I stood up with my feet as close together as I could and was able to stand up about 25 seconds before I began tilting.

Its odd that lately my muscles have been much more sore than my joints! If any of you thought joint pain was harsh, get a deep tissue massage to knots in your calves and flexion contractures behind your knees. Ugh. Almost enough to make me scream out in pain. And sometimes she presses down really hard in one spot for about thirty second. She says it forces the muscle to relax.

I don’t care how much it hurts though. All I want right now is straight knees. I don’t care if she tortures me. I feel alot better though. Its just that I don’t look any differently.

Not to mention, I still have not managed to lose a single pound. Literally. Every single morning I weigh myself, and every single morning it says the same exact thing. I was beginning to think my scale was broken, but nope. It works perfectly ok.  I bet my knees would feel amazing if I lost all theexcess weight. But nothing is working! I ate only vegetables and fruits for three weeks and still didn’t lose anything.

I keep having these dreams where I’m running and bouncing around like everything is just fine and dandy. Oh man, to be able to run…..or even jump! Wouldn’t that be amazing. To just take off as fast as I can and run until I cant anymore? That would be beyond amazing.

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Breakdown at the doctor’s office

So, I’ve never actually cried in front of a doctor before now. In fact, a problem of mine is that I always try to downplay my pain to people around me. ( There are only a few people close enough to me that I can actually be honest with)

After the worst night of my life last year ( You can read about it here) https://raandme.wordpress.com/2008/06/27/rheumatoid-arthritis-and-stress/ , I called my doctor. She asked me how I was doing and I said something along the lines of  “Oh, I’m ok. I’m just having a bit of a bad time” I have no idea why I do that. The woman I was staying with told me to cut it out and to at least me honest with my doctor for goodness sake. How can I expect to get the right treatment if I don’t even tell her how much pain I’m in. I had to admit she made sense.

So I had a doctors appointment last week and I had to see a new doctor. I’m so upset by the visit, that I haven’t been able to make myself write about it. I just start crying again. The poor woman. I still feel like a complete idiot. But after she told me there wasn’t anything she could do about the weight right now, I asked her what the plan is with my knees.

I recently went through six weeks of physical therapy. I havnt updated with pictures from week 4-6 because of the coma my computer was in. And unfortunately it is suffering from complete organ failure. Not to mention amnesia. So I cant upload at the moment.

ANYways, there wasn’t much of an improvement after week three anyway. I feel better. I’m able to walk farther and longer. I actually made it a block and a half last night after a play! I barely made it, and I’m feeling the pain today, but my god! What a difference. It would never have been possible before therapy. So while there were improvements, they are still permanently bent. I still look like I’m preparing to jump. People are still staring at me, and I still hate it.

My physical therapist said my knees will probably never straighten fully again. And that they wouldn’t even get much straighter. Apparently it’s not exactly reversible. The reason it got so bad was that apparently, unconsciously I was protecting my knee by keeping it bent a bit. Because it hurt to bad otherwise.

I had a ton of Xrays taken two months ago and I’ve been waiting for the results. She pulled of the radiologist report for the eighteen Xrays, and it was exactly two sentences and said that there was evidence of R.A.

I said ” Thats all it said? Eighteen Xrays, and they tell me I have R.A. I already knew that. What was the point? ”

The other sentence said something about the bones in my knees. Fortunately the bones were not too damaged. Its everything surrounding it that’s damaged. Ligaments, etc. So since the actual bones are not that bad, I don’t qualify for knee replacements. So basically what it comes down to is that I have to keep looking like this! For god knows how long!

Now I’m upset again. The only way I made it through the wait to get on Medicare is by hoping that once I got on it and had proper medical treatment, I could get better. Not healed of course, but better.

I guess I’ve been painfully naive. I guess it was silly to think that. It comes down to the fact that its just too late. They have been like this too long now to do anything about it.  I don’t want to complain and sound like I’m pitying myself. But I do want to be honest. It’s the whole point of this blog. And I dont mean to wax melodramatic. I keep trying to put it out of my head.

It just that now I don’t have anything to look forward to. No next step to make it to. And now I don’t know what to do.

I just cant stop

Oh God, I know everyone is sick of it. I know they’re tired of hearing about it. But I just can’t stop talking about my weight.

They’re sick of it because no one knows what to say. I do not blame them for being sick of it. I’m sick of it for them. But I don’t want them to say anything. I just want to complain. Because I feel so gross. Because I look so different.

My poor brother has come up to visit for a week or so. He is so sweet. But you can tell he dosn’t know what to say. Occassionally when I get mopey he looks over and in a really high pitched voice sings ” you’re beauuutiful, you’re beauuutiful, you’re beauuuutiful to me.” That always makes me smile.

And then of course, I feel so superficial for complaining. So I’ve gained weight. So what if you feel better. I’ve heard that a few too many times. Except, I don’t feel better anymore. I’m not getting around any better than I did pre-prednisone. Im just 65 to 70 pounds heavier. Everytime I stand I feel so heavy. I can feel the difference on my knees. They say that it you lose just ten pounds, it will take 30 pounds of pressure off your knees. So what does gaining seventy pounds do to my knees? Well, whatever it is, I can feel it.