It's funny how unprepared you can be when you think you'll be fine. Every time I finish a bath and go to take a shower, I think I've run the water long enough to be warm only to be shocked with a brief blast of cold.
In October, I was seen by a Certified Nurse Practitioner named Colleen to discuss treatment and get a prescription. I was terrified, relieved, and grateful that she would see me because I'd been told the day before my scheduled appointment that my treating neurologist was ill and couldn't make it and the CRNs only worked in the day time. I had to email a client stating that I had to leave no later than 11, the scheduled end of a meeting, in order to make an appointment and if they foresaw the meeting running late I would make arrangements. They said it would be fine and thank you for the notice.
Colleen wanted to speak in depth about all of my options. I knew there were inject-able drugs and the Tysabri infusion, the clinical trial I would refuse. She told me all about Copaxone. how it had been FDA approved in 1996 and had very few side effects. Granted, I'd have to inject every day, but this seemed like the best answer. Side effects included, mainly, some minor injection site reaction and a possible chest tightness that dissipated in 30 minutes. While still nervous about administering a daily injection, I signed up whole heartedly. I even had a flu shot for the first time to see what a shot would feel like. No big deal.
I was not prepared for the knots. It doesn't happen every time but it happens frequently enough where I develop hard knots under my skin which redden and becomes sore and itchy. As they fade, the knots leave phantom bruises. They are unsightly and irritating but warm compresses help with the itching. But then J helped me shoot into my arm for the first time last night and I've had what I believe is a negative reaction that has caused me concern for the past few hours. I've felt this way one other time in my life, years ago, and the feeling is so odd that I don't like describing it to people because it makes them uncomfortable. I feel as if a layer of my being is slowly stripping away from my body, internally. Not my legs or arms, my by central nervous system, like I am shedding a very much needed part of my skull and spine. It is a nebulous feeling and an uncomfortable one. I'm not scared, not yet, because, as I said, I've had this before and also I read on line, whilst researching a different reaction, that many people cannot shoot into their arms because they have a worse reaction.
But I wasn't prepared. I thought I might have some redness and soreness, not hard lumps under my skin that I press on like old chewing gum. Not warm red marks, making me fear an infection. I spoke with a friend today about what might lay in store for me, something I don't do very often because I don't like discussing things I have no control over and I don't like dwelling in fear. But then I started to have this very odd and uncomfortable sensation and multiple sclerosis felt real to me for the first time in 6 months, the day after I mailed a letter to a friend in which I said that it still did not feel real regardless of the daily shots.
I think a lot of people think of MS and think of wheelchairs. I know I used to. But now that I have it, this dreaded disease that I've always been scared of, I know more about it and know how much more is at stake. My friends and family don't like to talk about the "might happen" aspects because they can't stand to think of them happening to me. I don't either, but I have to be a big grown up and know what might happen. I have to understand that I may lose my vision and have diminished cognitive function. I have to know that one day I may not be able to walk. I think I could handle a wheel chair, but what if I cannot see to read, what if I lose my capacity to think as well as I do? I never knew that these were things I'd have to be terrified of. And there is nothing I can do because there are no guarantees with MS. Things are good right now, weird side effects and all, but I cannot play ostrich anymore. Not that I have to ruminate in what may be awaiting me or give up on life as others might if they feel they've been given a death sentence. But I have to be aware of what might happen so that I can be as prepared as possible.
Not that I'll ever be fully prepared for any of it. I just can't risk being shocked.
In October, I was seen by a Certified Nurse Practitioner named Colleen to discuss treatment and get a prescription. I was terrified, relieved, and grateful that she would see me because I'd been told the day before my scheduled appointment that my treating neurologist was ill and couldn't make it and the CRNs only worked in the day time. I had to email a client stating that I had to leave no later than 11, the scheduled end of a meeting, in order to make an appointment and if they foresaw the meeting running late I would make arrangements. They said it would be fine and thank you for the notice.
Colleen wanted to speak in depth about all of my options. I knew there were inject-able drugs and the Tysabri infusion, the clinical trial I would refuse. She told me all about Copaxone. how it had been FDA approved in 1996 and had very few side effects. Granted, I'd have to inject every day, but this seemed like the best answer. Side effects included, mainly, some minor injection site reaction and a possible chest tightness that dissipated in 30 minutes. While still nervous about administering a daily injection, I signed up whole heartedly. I even had a flu shot for the first time to see what a shot would feel like. No big deal.
I was not prepared for the knots. It doesn't happen every time but it happens frequently enough where I develop hard knots under my skin which redden and becomes sore and itchy. As they fade, the knots leave phantom bruises. They are unsightly and irritating but warm compresses help with the itching. But then J helped me shoot into my arm for the first time last night and I've had what I believe is a negative reaction that has caused me concern for the past few hours. I've felt this way one other time in my life, years ago, and the feeling is so odd that I don't like describing it to people because it makes them uncomfortable. I feel as if a layer of my being is slowly stripping away from my body, internally. Not my legs or arms, my by central nervous system, like I am shedding a very much needed part of my skull and spine. It is a nebulous feeling and an uncomfortable one. I'm not scared, not yet, because, as I said, I've had this before and also I read on line, whilst researching a different reaction, that many people cannot shoot into their arms because they have a worse reaction.
But I wasn't prepared. I thought I might have some redness and soreness, not hard lumps under my skin that I press on like old chewing gum. Not warm red marks, making me fear an infection. I spoke with a friend today about what might lay in store for me, something I don't do very often because I don't like discussing things I have no control over and I don't like dwelling in fear. But then I started to have this very odd and uncomfortable sensation and multiple sclerosis felt real to me for the first time in 6 months, the day after I mailed a letter to a friend in which I said that it still did not feel real regardless of the daily shots.
I think a lot of people think of MS and think of wheelchairs. I know I used to. But now that I have it, this dreaded disease that I've always been scared of, I know more about it and know how much more is at stake. My friends and family don't like to talk about the "might happen" aspects because they can't stand to think of them happening to me. I don't either, but I have to be a big grown up and know what might happen. I have to understand that I may lose my vision and have diminished cognitive function. I have to know that one day I may not be able to walk. I think I could handle a wheel chair, but what if I cannot see to read, what if I lose my capacity to think as well as I do? I never knew that these were things I'd have to be terrified of. And there is nothing I can do because there are no guarantees with MS. Things are good right now, weird side effects and all, but I cannot play ostrich anymore. Not that I have to ruminate in what may be awaiting me or give up on life as others might if they feel they've been given a death sentence. But I have to be aware of what might happen so that I can be as prepared as possible.
Not that I'll ever be fully prepared for any of it. I just can't risk being shocked.
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