This morning -- if you can call 3:40am morning -- I awoke to terrible pains in my right leg. My leg was cramping, releasing, cramping, releasing, to a tune of pain all it's own. My right arm was stiff and I could feel contractures trying to get a hold on my poor right limbs. While lying there thinking about the lesion that is low on my spinal cord that the doctors were so worried about when I was diagnosed, worried about how big it was and the threat of it getting bigger and taking my legs from me, that didn't sound so bad this morning. I can't imagine an amputation and a peg leg to be any worse than legs that hurt and cramp all the time. And while I enjoy the thought of step, thump, step, thump, I'm afraid they would forgo a peg leg in favor of something more modern against my wishes.
I was not happy to be awake so early: I turned off my Hello Kitty lamp and turned away from my Hello Kitty clock at 10:45 last night and was looking forward to a good amount of sleep, having only napped an hour yesterday. I am now setting the timer on the stove for an hour when I want to nap, and have given strict instructions to my roomies to not turn it off; to let it wake me up and make me turn if off, no matter how annoying it is for them to listen to it buzz until it rouses me. I set the timer, race to the couch and hurry to get to sleep, not wanting to waste a precious minute of my beloved nappy time. Most days it has worked for me. I even got 7 hours of sleep the other night, which put me in such a good mood I made pancakes for breakfast for everyone. But when I woke up this morning and calculated the amount of sleep I got, I could feel the deep frown on my face and the frown lines forming faster than usual, even while fantasizing about peg legs that don't torture me and steal my sleep.
Lying there with the hideous pain in my leg and the numbness in my right arm, I started to think about my current neurologists and wondered how they were sleeping. After a long day at the office of telling people what their disease is and what it is/is not doing to them, do they go home and play with the kids, make dinner, maybe work out a bit and go to bed for a nice 8 hours of sleep? They get to leave the MS behind. They don't have to deal with a disease that makes me so friggin tired making dinner can be overwhelming some days. And to exercise at night is to put myself at great peril: it messes with my vision and I am too tired and clumsy to do any exercising safely at night. I want to spend more quality time with Princess and it bothers me to think that she has to live with an aunt that has so many limitations on what she can do. Who goes to bed early because her night meds lower her blood pressure to the point she gets light-headed unless laying down but if she delays taking them is in too much pain to function. That she has to tuck me in at night and not vice versa.
I was thinking about what my shrink said my neurologist said about my disease and how it was going. That it is "under control," I am not currently having any problems, and my disease accumulation has been drastically reduced since my starting Tysabri. I have an appointment with her coming up soon and I have a few things to ask/say to her, things she may not like because she obviously has not been listening to me. Tysabri has greatly helped me; this is my first major attack (I've had a few new problems since starting T. but not a full on attack like this) since starting it. I still have the nicking away and slow deterioration though and I would have thought she would take me seriously when I told her of the new problems I have had. Or noticed the way I walk has gotten worse, or read other doctors' reports of their findings. I have to see different specialists for different things, like my vision. Did she even look at the report from my opthamologist before wiping her pompous behind with it? That my vision is getting worse? These are things I want to know and intend to get answers to.
I am sick to death of others telling me what I am feeling and it is stopping here. No more Ms. Nice Blindbeard. I obviously have not made my point and my neurologist is not going to be pleased when I drag my peg leg in to see her in a few weeks. Lack of sleep, abundance of pain and no one listening to what I have to say about my own body (and I am not a hypochondriac or one who freaks about any new problems) has made me reach my breaking point. I am on the war path and ready to crack some thick skulls. I'll keep you updated on how it goes.
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