The Silence of Our Friends

The day after blogging against disabilism day.

I missed blogging against disablism day. It wasn't accidental though, it wasn't exactly purposeful either. There are times I want to talk about it, and times I don't. I didn't at first, but read some other posts, and now I feel like I want to. So my post is for the day after blogging against disablism day.

I am a disabled woman. It took me a long time to conclude this. I had hopes that my condition was temporary, but now I know that isn't true. If you are reading this you probably already know, I have herniated cervical discs with a bone spur which cause chronic pain that can have me laid up for anywhere from hours to days at at time. I've been having a particulary bad flare up since around Christmas time, I can't pinpoint an exact date, because my pain had been increasing and yet not steadily. People who have seen their doctor for pain know about "the scale", your doctor will ask you to rate your pain from 0-10. Last spring/summer my pain was anywhere from 0-3 with very short zaps up to 5. Now the scale is at 5-7 with zaps up to 9. It's out of control, because yes, the lowest my pain goes is 5.

ARGH! There is so much I want to say now that I don't know where to begin, and I'm worried that if I go down one avenue I will forget another that I meant to talk about, and that much of this will not make sense anyway, because my meds are severely affecting my memory and ability to concentrate.

One thing I want to say is that I lied about something. Right now my pain level is about 3...but I said the lowest it goes is 5, didn't I? WELLLL...the lowest it goes is 5 if I stick to the treatment plan my doctor expects me to. I am allowed 5 vicodin per day. I've taken 7 today though, in the last hour took 2. If I take that much it lowers the pain enough so that I can sit here and type up this post. Can you figure out that I think that my dosage needs to be adjusted? My doctor refuses, she has no other chronic pain patients and isn't comfortable adjusting it without some guidance. The one who was supposed to give her that guidance is an asshole "pain management" doctor who doesn't believe in giving patients opiod narcotics for pain AT ALL. She's upset because she wants to help but he won't give her any advice, so we decided to fire him. He resents being fired though, and even though I signed a release so that he should give up his treatment notes to my new pain management doctor, he is dragging his feet. He told them that I didn't sign a release, so now I have to go back to his office and sign another, and I have no doubt he will find some other way of screwing this up. Either by not sending, or sending incomplete notes, or writing something in there that will make me look bad and make my new doctor wary of treating me. My new pain management doctor refuses to make an appointment to see me until he has notes about my current/recent treatment. So I'm in limbo.

I also know my primary is worried about addiction, which is why she will not adjust my meds without guidance. Of course I worry about this too, but you know what? I worry more about being useful and having a life. If I stick to the treatment plan I can lower the pain enough so that I can move without screaming, but still have to just grit my teeth and get on with it as best I can. No one should live like this and especially when there are options and they don't have to.

When I was first diagnosed it was easy to treat. I was given a six day prescription of prednisone and my symptoms would clear about the third or fourth day in. I'd be pain free for up to a year. Then I'd get more prednisone for the next flare up, good to go again for up to a year. This stopped working about 5 years ago and I've been through numerous treatments and meds since then. Five years ago, when I knew it wasn't going to go away so easily I used to get suicidal thoughts. I simply didn't think I could handle living in so much pain for the rest of my life. But I had to hang in there, if not for me, for my family. They are what kept me going. Eventually I sort of got used to dealing with a certain level of pain, and my treatments/meds did help sometimes. So the hope was always there that things could get better.

Now I'm scared, because I'm getting the suicidal thoughts again. Nothing serious, like planning it out or anything like that. But I thought I was past that and now I know I'm not. It's that same hopeless, "My God, I don't think I can live like this forever." I don't want anyone worrying that I will actually carry through with it, it really is only a passing thought at this time, and I quickly dismiss it, but I don't like that I am thinking it at all. I'm not telling my readers this to get a pity party going or anything like that. I'm telling you this because it doesn't have to be this way. I already said that I am functional now because I doubled my dosage tonight. (I also doubled my dosage this morning which is why I was able to post earlier. This explains why I have had 7 instead of 5 vicodin today.) I wish doctors would listen to their patients, I'm not a drug seeker, and my doctor should know this since my dosage has gone down as well as up since she has been treating me for the past year and a half. I do want my dosage level raised now, but only for as long as it takes to find a non-narcotic treatment for my pain, then we can lower the dosage again or remove it altogether.

I guess this is the background post. It's getting pretty long so I'll conclude here for now and gather my thoughts for the next avenue I'm headed down.

posted by Donna at 1:16 AM |