Twelve Weeks Ago

by: Keiden

It has been a busy week with lots of things packed into it: dog sitting, ritual, another appointment with a doctor, and playing music to name a few. Shannon and I spent a quiet Halloween at my Mom’s house sitting in front of a fire in the fireplace and hanging out with her dog, Rita. Rita is a good dog with a sweet old face. It was really nice to spend a couple of nights away from the sounds of city and to take walks with her through the crunchy fall leaves. Over the weekend we went to an Ancestor ritual hosted by the temple that Shannon and I belong to, the Universal Temple of Spirits. It was a magical time with magical people that I love. I love getting to drum at temple because I get to drum for myself, for other people, and for the Spirits. Shannon even played some claves with me for a bit. There has been a lot more music practice and playing this week and we are also starting to practice together more. There are a couple of songs that we have been working on with the ukulele.

I am not sure why but I have felt out of sync with the weather lately. Days that I want to rest and relax seem to be gorgeous and beautiful days and then days where I want to get things done seem to be wet and chilly. The weather and my energy did match up on Wednesday morning and I was able to get the forge out for a bit. I didn’t finish any projects because I ran out of propane but it still felt good to bang on some hot metal for a little bit. I have been gaming a lot this week, some of it has been for relaxing time but I think some of it has been a bit of escape. I can’t ignore the thoughts, questions, and concerns about taking this medication anymore.

This Monday I had some hard emotions to work through because starting this medication is becoming more real and something that I have to actively deal with. I spent the better part of Monday morning on the phone with three different organizations talking to people about this medication. One was Hopkins and they walked me through some basics of storing the medicine and recommendations for scheduling the shots because I am going to be getting the three days a week shots instead of the daily shots. Another one that I talked to was the specialty pharmacy that will ship the medication and they told me they were waiting on a code from the doctor before they can set up shipment. The last one was the place that sends the auto-inject thing and coordinates the nurse training. I am a little nervous to hear what the pharmacy will tell me the cost is going to be at first even though I have been assured that there are many ways to help get the cost covered. I’ve just never seen so many steps to go through to get a medicine. I’m nervous because I was told that this medicine is going to help prevent my body from continuing to attack itself, that this medicine will help prevent any more damage but how much of a hassle is this going to be over time having to coordinate with several places?

I was real antsy on Wednesday because I was going to the neuro eye doctor to find out on how extensive the damage is in my left eye. Turns out the damage isn’t all that bad and nothing to worry about because my eyesight wasn’t and won’t be effected by the damage there. The only things that will make my eyesight deteriorate are old age and if I have another bad MS flare up and my body starts attacking itself again. The first one is comforting because that has always been the case but the second one is concerning and so far all of the possible outcomes of another flare up all seem kind of concerning, but I think that is why the doctor wants to put me on the medication. If it is MS then it is possible that I could go the rest of my life without another flare up on the medication. If it isn’t MS the medicine won’t be hurting me but I’ll be sticking myself with a needle a bunch. But there isn’t an answer right away because the only way for them to be able to tell which kind of MS I have is to see what happens over time. I got most of my sensation back but not all of it, how much more could I lose in another flare up? With questions like that and with all these things in mind I think I will take my chances with the medicine. I’m not thrilled about it but I’m not going to fight it either because I’d rather not have another flare up though I need to keep in mind that it is a possibility.