Sunday, April 20, 2008
I think I hit the bottom of this MS episode, finally. I'm now in the "I'm partway there" section of it. In this phase, I find myself taking a lot of pills.
I went into the MS clinic last week. Rae asked me "tell me what meds you are on again besides the Tysabri?" I said prozac and one ativan at night to help me sleep. She said "That's all???"
During the course of our conversation, she reminded me of several prescriptions she had written for me, that I had filled but not really taken, to help with some of the various effects of the flare-up as well as the steroids.
Methlyn (aka Ritalin) for energy, fatigue and cognitive 'MS brain', Prilosec or something like it for steroid heartburn or whatever; my usual "post-coital" antibiotic (note to self: remember, even if you are not having sex in a particular week, take it anyway! My motto is a red circle with a line through it that says "UTI". They seem to be the start of many of my MS problems.) Additional Ativan to get through the post-steroid anxiety and all that; Additional prozac to stave off depression; Detrol for the bladder malfunctions (I'm not convinced it really helps.)
So there. Now I am being a "good" MS patient. Eventually, God willing, I will be back to down to my normal amount of prozac and one sleep aid of some type. I've tried a whole Methlyn Pill and a half Methlyn Pill and both are still too much for me. This week, if I feel the need, I'll try 1/4 of the pill. I wonder if methlyn energy is actually real energy? Or if it is just something you will crash down from weeks later? I've never been on it long enough to know. Last time, I took it for one day and said "no thanks". This time, the fatigue and energy crap is just going on and on so I'm trying it out. I tried Provigil years ago but didn't like it for some reason I can't even remember. I don't mind taking a bunch of drugs for a relative short-term period, but I'm not fond of it for the long haul. With the exception of antidepressants - I think those are my life-partners :-)
A big thing that we talked about was applying for short-term and/or long-term disability at my place of employment. My brain does not work as it used to and I don't have the energy. I have about *this much* energy in a day (visualize ~3 inches). It gets used up pretty fast. That's not normally who I am, or was. I have no idea if this level of brain dysfunction and lack of energy is going to become the norm. If it is, I'm learning how to live with it - no, maybe even learning how to enjoy having to live with it. Maybe. However, I cannot do everything I used to do. So, I am going to take the step to fill out the forms, drop them off at the neuro clinic and just see how things go over the next few weeks. I've seen this coming for a while. I started making plans - we are looking at our budget and seeing what we can do to live 'smaller', and I am turning in my Blackberry to the office. Amusingly, I've replaced it with an iPhone which seems to counter both moves. However, the iPhone is not attached to my office email like the Blackberry, and I am using 'found' money to pay for it. And, once you have an iPhone, you really don't need to buy anything else ever again.
I went back to work on Thursday, "for a few hours" but stayed and stayed and stayed. As my friend Paul said, it was like a high school reunion except that I was the only one who had been gone. Staying so long was a mistake. Friday I went it for about 2 hours. Smarter. I told them (them being my managers) that I would likely just work 3 or 4 hours a day for a while to see how things are shaking out.
In the meantime, I was really saddened to read that my daughter's theater teacher
has taken a severe turn for the worse in her battle against melanoma. It's heartbreaking - they said a month ago that the tumors were shrinking, yet now they have grown again and they are stopping all treatment. She has an amazing community of love and support, for which I am grateful.
I've adopted a few thought patterns over the last 3 or 4 weeks. My favorite response to questions are "maybe" and "I don't know". Sometimes both at the same time. Another one is the story that Eckhart Tolle tells in his recent book about the Zen master who is asked "what is your secret" and he says "I don't mind what happens."
So, trrish, isn't it horrible that you have MS? I don't know.
Isn't it great that you were able to do the steroids? Maybe.
Isn't is awful that Adrian is dyslexic? I don't know. Maybe not.
What I did do last week was another round of Tysabri. It had been 45 days and they said 'do it now so you don't develop any allergies." I don't have the test back from the antibodies yet, so I decided to just try it again and see what, if anything happens.
I'm still enjoying the flowers, and crying a lot :-).