February 1, 2003: Did my first stint as a Brownie Leader trainer today. As trainer's we're encouraged to keep standing and moving around and I found that I couldn't keep that up for the full three hours. Got kind of shaky and tired. No one really seemed to mind my sitting down and training like that after I explained, so I'll just stay aware. As it was, I had a smaller than usual breakfast, so possibly part of the problem was hunger. The most annoying thing about this whole MS thing is my tendency to think "oh my gosh, this must be MS" when in fact it's just as likely to be something else. I'm thinking seriously about bringing a cane to lean on for my next training though, just in case.
I am once again as empowered as can be. Set up the autoject to give myself my shot and it only delivered about half (or less) of the drug. The Shared solutions folks don't want me to reinject, but they also think I should take all my drugs, so I decided to just clean off the needle with alcohol and inject myself with the rest manually. Problem is that this shot is in my left arm and well... YOU try pinching up your flesh on one arm and then injecting with the other arm into your upper arm. Count it up... you need at least 3 arms to make that work. I got around it by sitting next to my counter and using the edge of the counter to push my arm up a bit so that I could stick in the needle. Scary, but it worked!!
February 3, 2003: Well I've not been doing a great job of keeping this up to date, but part of the reason is that there really hasn't been that much to say. Last night I gave myself my shot in the belly. All went well as far as I can see, although it was a bit hard to push the syringe into my skin, I figured it was one of the dull needles that Msers have been complaining about. Today however I have the blood bruise of all time. It's an ugly spot around the size of a quarter. Looks terrible. Doesn't hurt at all, but it makes me wonder what (if anything) I did wrong.
February 6: I've been starting to get a rash on both of my arms where I'm scratching all the time. The rash has been here for a while and it's starting to bug me. I'd worry about some sort of allergic reaction to the Copaxone, but I"m only getting this rash on the arm sites not any of the others. Currently I'm just putting skin lotion on it and trying to shoot myself back farther away from the rash.
February 13: Darn it! The stupid autoject did it again and this time in my RIGHT arm. More than half the copaxone was still in the syringe when the autoject stopped working. Rick was on call and I was completely on my own. You might say, "but Grey, you did your left arm no problem as Empowered MS Woman. So what's your deal?" The deal is that I"m EXTREMELY right handed. I sat down and plopped my right arm on the counter. Awkwardly grasped the syringe in my left arm and did my best. It took 3 sticks before I could get the darned syringe in and then I had a lot of trouble trying to push down the plunger with my left hand. Ended up shooting right in the middle of the rash too, no way to aim with my stupid left hand. Grrrrrrrrrrr.
February 14: Called Shared Solutions today to whine about my itchy reactions, my rash on my arms, and the misfiring autoject. They were reasonably helpful. I'm to go see the nurse and get the rash checked out. It might be just dry skin combined with lots of scratching, but just in case it's some bizarre reaction I'm happier having a medical professional who's not my anesthesiologist husband looking at it. They took the lot number of my latest batch of Copaxone, since I've been having lots more itching and reactions lately. I'm to stop shooting myself in my arms until I get seen by Molly the nurse. Personally I'm thrilled since the arm shots are absolutely the worst and itchiest. They also say that I might just be having a reaction because I'm now working my way around to sites that I've hit enough times that I'm dropping shots on top of other ones. Don't know how true that may be since I try to be very careful to feel the skin and avoid any "lumpy" areas where there may still be a pool of meds trying to dissipate into my system. I'm also going to expect a new autoject in the mail sometime soon and hopefully it won't misfire so often.
February 17: Lots of snow here. Lots and lots of snow. Lots and lots and lots of snow. Rick got a ride into the hospital and will return someday, who knows when. I've got lots to shovel today (we got just short of 2 feet.)
February 18: Well we're practically free of snow now here on our streetand driveways. Charles, one of my neighbors, pulled out his snow blower when it became obvious that we weren't going to be plowed any time soon and snow blowed a path out of our cul-de-sac. After he finished, he came over to my driveway where I had manfully been shoveling for all I was worth and took care of my snow. Paul and I made cookies for him. I'm thoroughly fatigued today and conked out early last night. I'd worry about MS fatigue, but I suspect it's just strenuous snow shoveling!
February 19: Met with Molly the nurse today about my site reactions to Copaxone. I just wanted a professional who wasn't my husband to look at the rash I've been growing on my arms and let me know what's the what. She feels that it's just too much scratching at the shot sites combined with dry skin from the winter. That's a relief! She also showed me a new way to get at my arm sites which I think will help a little bit.
Made a momentous decision. I've been feeling a bit dizzy when I get tired lately and since I already have a fabulous walking stick, I decided it was time to buy a rubber cane tip for the bottom so that I could use it as a cane.
February 27: First day that I carried my stick with me to the mall to lean on when I'm not walking. Must admit that it was quite the help, especially since I was testing electrical outlets for the Girl Scout sleep in and I was doing a lot of up and downing.
February 28: Continuing to carry the stick. It's causing comment. It's kind of silly, since I walk happily along without it rather jauntily but then when I stand still it's sooooo good to have it handy.
March 1: Mall event with the Girl Scouts. Stayed up all night, drove home at 7:00 AM. Fingers crossed as to what this may or may not do to me.
March 2: Boy did I need the stick today. I'm still really tired from the mall event. Also had a weird thing happen. When I turned out the lights to go to bed I became INSTANTLY disoriented. It was bizarre and disturbing.
March 3: I continue to have a few odd symptoms. I must be having a minor flare of some kind. My face has been off and on numb for the last week, not like it was last summer, but just lightly numb around the cheek and nose area. Today when I took my shower and let the water run on my face it felt exactly like when the Trigeminal Neuralgia jolts were about to start EXCEPT that I didn't get the jolt. I don't really mind the numbness if I don't get the pain jolts with them.
I've had some shooting pains behind my left eye. I'm going to go on the assumption that it's just leftover from being tired from the mall event, but I'll keep an "eye" on it (ha ha, get it) in case it's the dreaded Optic Neuritis heading back for a visit.
I'm definitely walking funny. When I really concentrate I'm fine, but if I just amble along I start to shuffle and drag one foot.
March 7: I am cautiously hopeful that I'm getting used to the Copaxone site reactions at last. The last couple of shots haven't burned as much as they used to and while they still itch, it's not as maddening as it once was. Maybe this 4 - 6 month thing is true!!
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