The summer is flying by so here is a little update post. I may have to make multiple posts to get it all in. Sorry. When it rains it pours.
In eight days I will take the last of my six months of methlyprednisolone. I AM BEYOND EXCITED. This means I am only one MRI away (scheduled for October) from seeing if those lesions settled down and stopped firing off. The damage that was done is done. It will never be erased. But no new damage should be happening with the steroid and the copaxone cocktail I have been on.
Unlike cancer, I haven't been able to educate myself on this auto-immune disease as much. The symptoms are different for everyone as is the treatment.
People ask how I am doing. The honest answer is I don't really know.
I had been getting relief from a monthly massage. But that has sort of slowed down. I feel like the relief is not lasting like it used to. In fact, I can hardly feel the relax part of it at all. Makes me a bit sad. I walked away from the last massage with a greater range of motion in my neck but I couldn't actually "feel" any different. I usually feel relaxed and rejuvenated. But the last couple of massages haven't given me that feeling. Now is that me losing some of the feeling in my nerves or is that my anxiety playing with me? I wish I knew.
Something new that has happened is my napping. I don't know if it's just summer or the fatigue, but every time I sit down I can catnap. It used to be that I could only sleep at night in my own bed.
Evenings are the hardest, by that time I am so exhausted I can hardly keep my words from slurring. I hate that analogy but it is truly like I am buzzing. I can't walk straight. I can't see straight. I can't speak clearly. It is odd. Even more weird is the fact that I am getting used to it.
I do my best thinking in the mornings. I am more cheerful. I enjoy little things. I am relaxed. By the late afternoon all of that is just barely a memory and I am struggling to keep up with the rest of the world.
Physically, aside from the evening dizzies, I can still maintain a four mile walk with a friend 4-5x a week. I look forward to those walks. It makes me feel normal for at least one hour of the day.
I have given up on much else as far as working out. I know I should probably do more. But, I am. plenty sore from the walking and I don't want to think about adding more pain or fatigue right now.
Emotionally, I am a social person. In the past 10 years that has definitely slowed some due to children and activities. But, I feel like I am more hermit-like now than ever before. I find myself cancelling plans and thinking of excuses to get out of activities more often. Yesterday, on the way to one of the kids' ballgames, we drove past the farm-place of a friend who had passed away from cancer a few years back. I immediately thought of my own friends who continue to invite me to their gatherings even when I don't hardly show up anymore. I am reminded that our life here is short and that the Lord gave us this time only temporarily. I feel guilty for taking it for granted that I will have time for friends and family later. This is something that I want to be better about. Spend time with the ones you love. We just don't know when our time will be up.
My injections are annoying. I am on copaxone. It is a 3x a week injection of a synthetic protein that is supposed to stop the deterioration of the myelin. I have to rotate my injections. I can do most of them myself, but the back of my arms and my hips are hard to reach. I often ask my husband or my daughter to do those. The injections are becoming easier. I have messed up my share. I forget to take the cap off the needle before I press the injector button. Sometime the needle is bent. I have accidentally pressed inject before I put the syringe in my skin and expelled all the liquid onto myself.
When I do it correctly, it's okay about half the time. Sometimes it stings really bad when it goes in and make a huge lump that is itchy and sore for days. I have played with increasing the depth of the injections and that has helped although I bleed a bit more. My thighs and my arms are the most itchy. I think the other areas are a little less annoying. I cannot imagine injecting without the auto-inject tool. I have a hard enough time using it. But to put that needle in all alone? No thank you.
I have a few friends who are going through their own MS journey. I am able to connect with them occasionally to see how each of us are navigating. It has been extremely helpful, although I believe I do not reciprocate the support that I receive. I hope to be better about that as I get more adjusted to my new route.
I was out and about the other day and I ran into someone who said something about her family member having MS. She sort of commented that every post of hers on facebook was about MS now and rolled her eyes. I immediately thought of my own journey and how I read something everyday that intrigues me and maybe I share too much, too. For a minute it bothered me, then I forgot about it. Another symptom? Or just a survival technique? Either way, I am not going to stop learning about the disease because it bothers other people. I have much to learn and I will continue to read and share and post. You never know who else is reading and may need the information. If not, scroll past it and move on with your own life. That's what I do.
I think that about covers this almost 6 month update. Our summer has been all about softball and baseball and swimming and gardening. I hope to post some photos in the next few posts.
