So, I started the new powder form of Avonex last night. Basically it is the same medicine, I just have to mix it myself. Dr. Beall is hoping this will be tolerated by my body better. If today is any indication, then I am not hopeful. I have been in pain all day long. I still am and it isn't stopping, which is worse than before. I don't know. Maybe the medicine triggers my Fibromyalgia? It is different from that pain or that pain times 10! Who knows? Guessing as always. I see him November 10th, and if there is no improvement than he wants to switch to Betaseron. I just want something that works. ANYTHING that works. So far, I feel that I haven't had much improvement. Dave insists I have had better days. Maybe he is right. It is hard to remember those moments during these painful ones. I still feel I'm in the middle of a relapse and I know this isn't a cure so...
The nurse who came to train me on this shot was very nice and very understanding. She actually listened when I spoke and acknowledged the symptoms I told her about. Novel idea, I know. Anyway, this week with my neurologist office was another episode of the keystone cops. They say they will accomplish something and when they don't, they blame me. I almost didn't get my prescription or a nurse to come out to see me due to their apathetic attitude. Well, I have had enough. I have decided to write a letter to the head of the neurology office and tell him about all that is happening. I also will be asking for a phone call or a face-to-face with him at my next appointment. Patients shouldn't be made to feel this way and my patience is certainly been tested. So we shall see what happens there. Hopefully, they don't start tripping me at my appointments, if they find out I complained. Oh, well. I can take care of myself. MS may be a pain in the brain, but Dr. Beall's staff is a pain in the butt!
Friday, October 16, 2009
Saturday, September 19, 2009
Water on the Brain (Just keep swimming)
Sorry for the long break between posts. I was hoping for something new to say. It has been a roller coaster couple of weeks. Up & down as far as how I've been feeling. I started a bad flare-up, or "relapse", last Saturday, September 12th. It didn't start til that night, so that was good. (I was on a date with Dave celebrating our 12 year wedding anniversary!)
We had gone to dinner and to Barnes & Noble in Rochester Hills. I know it sounds kinda boring, but we used to do that all the time when we were dating. We would split up and browse around. Then we would find each other and talk about things we found. Split up again and meet in the cafe for dessert and coffee and decide what to buy. It was so relaxed and enjoyable. You sure don't get that with kids around. We even had some full conversations without anyone saying "Mama" or "Daddy". We had a really nice evening. Sometime while we were walking separately, I began to feel unsteady and tired. I didn't want to leave. I wanted my time with Dave. So I pushed myself more. Than I "hit my wall". I had to stop. But I couldn't find Dave. I finally located him and he met me in the cafe. Sitting helped and we had a drink. I had my favorite, caramel apple cider. (So yummy...mmmm.) We decided to head home and I would finish my drink on the way home.
I could really feel the fatigue. But I still wanted to talk with Dave, so we did. When we got home, we were sitting in the car and talking for a couple minutes. All of a sudden, my hand jerks and my cup goes flying up in the air and tumbles between us. Thank God, it wasn't hot anymore and it was almost empty. But so embarrassing. That happened once before with my sister Shannon. We were at Shelly's bachelorette night and we were talking. I was holding a plate of appetizers when all of a sudden my hands jerks and the plate goes flying. Embarrassed then too. What can you do?
So that is how this flare up started. I was shaky the next day and as the week has gone on the fatigue has returned. I had my shot on Thursday and Friday was a really bad day. I have been having a bad reaction the last few weeks the day after my shot. I wake up in horrible pain and violent chills. They say this is common. "Flu-like symptoms". This isn't like any flu I've ever experienced. I have read on an MS forum that other people have had this extreme reaction like I did, but that it does pass. I am trying to find my patience. I take my Darvocet at bedtime and as soon as I get up. It takes some of the edge off, but it still is uncomfortable.
I saw Dr. Beall on Thursday, September 17th. He wants me to try the powder shots you have to mix yourself, instead of the pre-filled syringes I've been using. He says these are sometimes tolerated better by patients. If there isn't a change by my next appointment in November then he would like to try Betaseron. He feels the shots are helping me. And at the beginning I felt it was, but I'm not as sure now. He hasn't detected any weakness at my appointments since I started the Avonex. I detect it, but he doesn't. This can be frustrating too. I feel bad, but he says "normal." I asked him how he can find no weakness, but I can feel very weak. He says it can happen. When he sees me, it may not be showing at the time. But he could see me an hour later or the next day and have a different evaluation.
All I know is how I feel and lately, I am trying to keep my head above water. Like Dory from "Finding Nemo", I love to say..."Just keep swimming. Just keep swimming. What do we do? We swim."
We had gone to dinner and to Barnes & Noble in Rochester Hills. I know it sounds kinda boring, but we used to do that all the time when we were dating. We would split up and browse around. Then we would find each other and talk about things we found. Split up again and meet in the cafe for dessert and coffee and decide what to buy. It was so relaxed and enjoyable. You sure don't get that with kids around. We even had some full conversations without anyone saying "Mama" or "Daddy". We had a really nice evening. Sometime while we were walking separately, I began to feel unsteady and tired. I didn't want to leave. I wanted my time with Dave. So I pushed myself more. Than I "hit my wall". I had to stop. But I couldn't find Dave. I finally located him and he met me in the cafe. Sitting helped and we had a drink. I had my favorite, caramel apple cider. (So yummy...mmmm.) We decided to head home and I would finish my drink on the way home.
I could really feel the fatigue. But I still wanted to talk with Dave, so we did. When we got home, we were sitting in the car and talking for a couple minutes. All of a sudden, my hand jerks and my cup goes flying up in the air and tumbles between us. Thank God, it wasn't hot anymore and it was almost empty. But so embarrassing. That happened once before with my sister Shannon. We were at Shelly's bachelorette night and we were talking. I was holding a plate of appetizers when all of a sudden my hands jerks and the plate goes flying. Embarrassed then too. What can you do?
So that is how this flare up started. I was shaky the next day and as the week has gone on the fatigue has returned. I had my shot on Thursday and Friday was a really bad day. I have been having a bad reaction the last few weeks the day after my shot. I wake up in horrible pain and violent chills. They say this is common. "Flu-like symptoms". This isn't like any flu I've ever experienced. I have read on an MS forum that other people have had this extreme reaction like I did, but that it does pass. I am trying to find my patience. I take my Darvocet at bedtime and as soon as I get up. It takes some of the edge off, but it still is uncomfortable.
I saw Dr. Beall on Thursday, September 17th. He wants me to try the powder shots you have to mix yourself, instead of the pre-filled syringes I've been using. He says these are sometimes tolerated better by patients. If there isn't a change by my next appointment in November then he would like to try Betaseron. He feels the shots are helping me. And at the beginning I felt it was, but I'm not as sure now. He hasn't detected any weakness at my appointments since I started the Avonex. I detect it, but he doesn't. This can be frustrating too. I feel bad, but he says "normal." I asked him how he can find no weakness, but I can feel very weak. He says it can happen. When he sees me, it may not be showing at the time. But he could see me an hour later or the next day and have a different evaluation.
All I know is how I feel and lately, I am trying to keep my head above water. Like Dory from "Finding Nemo", I love to say..."Just keep swimming. Just keep swimming. What do we do? We swim."
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