Sep 03, 2010
At 2:15am I woke up and four hours later I was still laying there trying to get back into sleep mode. I had toyed with the idea of just getting up but didn't want to get into the habit of doing that so I remained in bed wide awake. What orignially woke me was my right hand and part of my right arm were very much asleep. It startled me awake. It was several minutes before I realized that it was just the way in which I had slept on it that had put it to sleep and that it was "normal" once I straightened myself out. It reminded me of a story that I had heard from the friend of my fil's. She had a similar experience only with her leg. She so freaked out that she called her dr in the middle of the night screaming about her leg, only to call back a few mintues later and say, "Never mind." She wanted to give me a heads up that the first few months after dx are the roughest and it's why I should limit the amount of information I allow into my head.
We heard from a friend of our late yesterday that he was going into the hospital unexpectedly due to a atrial flutter. He had had open heart surgery a few years ago and fortunately this was his first incident since then. He is a good guy and we are very close to him and his wife. The suddeness of the operation shocked us. Another reminder that we are not promised tomorrow no matter how safe we think we are. The rate in which life can change is breathtaking.
An across the street neighbor who had been ill with alzheimer died this week after 10 years of living with her disease. I cannot tell you the number of times that an ambulance had to be called to their house due to either her or her husband's various medical emergencies. The picture in the newspaper obituary showed her exactly as I remembered her. It was odd reading about her life before she moved to TX. Yeah, she lived the majority of her life, certainly the best part of it before I had ever laid eyes on her.
It was these and other thoughts going through my mind that was preventing me from drifting off into sleep mode again. Too much to think about. The significance of the next day and getting my first of a lifetime of injections of copaxone was also on my mind. The really good news was that the back of the neck discomfort was subsiding. I really do think there is something to not allowing your body to get use to a symptom that shouldn't be there. I have a sense that the l'hermittes sign has greatly diminished now that I am basically not allowing it to exist. A great side effect is that I have a great excuse not to load the dishwasher!
It was a beautifully busy day for everyone here. Weather-wise it was picture perfect. Cool morning for dog walking and window down car riding all day long. Swimming was on the schedule as well as cookie making for the vball team and getting the sandwiches ordered and delivered to the school. There were appts with contractors, church dramas to hear, engineers to talk with, vball games to go to and the nurse to meet.
Ellen, the nurse from Florida. Sweet woman, mother of twin 16 year old girls. She was happy to get a client here and so close to where she now lives. She arrived about 15 minutes early so my dh occupied her as I jumped into the shower. She had recommended a shower to relax me and get me ready for my education. There were several books and "goodies" she brought for me (eraser board, heat/ice pack, calendar with stickers, a travel pack). I must remember to take my perscription for the copaxone and my auto injector when I travel on airplanes, otherwise it is difficult getting through security.
First on the list was showing me the fine print of the the side effects of the drug (can cause panic-like attacks for about 15 minutes after shot). If someone isn't home with you when this happens you are suppose to call the 800 number for a nurse to stay with you until it passes. Yeah, right. Then it was on to the shot sites on the body. You must rotate! Seven sites, seven days (upper arms, both hips, stomach and top upper thighs). Think about it. Shooting yourself everyday for the rest of your life can create some marks on your body especially when the shot can cause some changes in your skin over the course of time. Don't cut corners, keep track daily, inject approx same time each day.
Next she had me and dh put together and disassemble the auto injector several times before we began shooting some saline into fake skin. There are adjustments to make depending on the site you are shoting. It was awkward at first. Not a normal thing giving yourself a shot. She also went over how to give yourself a shot manually should the auto injector break and you have to go "natural" until a new one arrives. And sometimes people prefer the auto injector on some sites and manual on others. Made sense. After about 35- 40 minutes it was time to actually give myself a shot.
Ellen had said that arms typically are the hardest to shoot so she recommended that we do my first shot there. We chose the left upper arm. Dh was watching from a few feet (Mr. Calm cucumber) and Ellen helped make sure I didn't push the injector too hard. It's a subcutaneous injection with a very fine needle that has only been used for the last 2 years (see I am really cutting edge). Still I could feel the needle go in and I could feel the heat after the medicine was administered. The copaxone should always be kept refrigerated but it can actually be kepted out of the frig 30 days before going bad. It also goes bad if it freezes no too cold refrigerators or pushed back too far. It's expensive stuff! What you don't want to do it pull it out of the frig and shoot it directly into your body without it warming to room temperature first. And so it was room temperature when I injected it. After a couple of minutes of burning I went into our family room which had a fan going. I was feeling fine but suddenly the air around me was not moving. In a couple of minutes and a ice pack later, the hotness disappated and I was left with a somewhat sore arm. Within 1/2 hour the intensity of the soreness was gone and now 2 hours later it is only faintly sore. The nurse was impressed with the injection site reaction. Not bad.
So here I am. The first day of the rest of my life ahead of me. Feels good that it's only been 11 days since dx and I have already come so far. I am so grateful for the speed in which this has all come together (thank you God). Yes, I know it's been almost 20 years in the making but finally there are some answers. There is a long way to go but at least I am moving in the right direction, forward. I am still just taking this a day at a time. Going where I am lead and making choices based on what I hear. What is next only tomorrow will reveal. Right now all I am focusing on is saying some prayers and going to sleep.