Beat Up, Beat Down and Weakened

I am feeling beat up, beat down and completely tortured. I had a seizure last night. As they go, it wasn't horrible. However, it somehow managed to twist my spine into a knot. My neck and upper spine and right hip took a beating. The event lasted roughly 40 minutes. Shot of Ativan stops things usually in 20 mins, this one 20 min was just the beginning of the slow reduction of movement. On a good note, i could breath the whole time and when I woke up this morning none of my limbs were facing the wrong direction - although I am pretty sure there are muscles in my neck that would greatly prefer my head to be facing my right shoulder vice forward.

I tried to get up about 11 am, ate a bit and went back to bed with my shaky, jerky, twitchy body. The good news is when you have been twitching for 12+ hours in an ativan induced sleep - your brain sees nothing wrong with going back to sleep while physically active.

Pain - is there a life without it? I saw the pain doctor. I explained that I can't get below a level 6 (when I am lucky). I average between a seven and eight level pain 24 hrs a day 7 days a week. I wonder if the pain meds are even worth taking. She gave me nothing, said lets wait for the test results. So here I am with pain meds that do so little. I remember the last time I took percocet, I swore I would never take it again. I hated the side effects. The fact that it deleted my memory of every event during the time I took it. Now I lay here and wonder which is worse? Being present and an active part of my life or not being in severe, tormenting pain? I am so angry that I am being faced with such a choice. What happened in my life that I am here in this nightmare?

I am so miserable physically and so drained I lay here praying I have lupus. Does anyone know how horrible that is? I have dear friends telling me "you don't want lupus". No, I don't want lupus I don't want to be sick. I didn't ask to have pain in every joint in my body. I didn't ask to have seizures
I just want someone, anyone to figure this out and do something to treat it. Help me somehow!

For God sakes as I lay here my left foot hurts so bad. I haven't been up more than 15 minutes today, if I put ANY pressure on it in the wrong spots it feels broken in every single little joint (yes I think I could count the tarsal joints blindly right now). The pain is up into my ankle.

In my head, I want to run. I want to run like I used to, feel all the tension melt, feel sweat pour down my face, legs, feel the wind dry it as fast as it forms, feel the burn in my lungs, quads, calves as I push myself past that invisible barrier. I want the satisfaction at the end of "I did it!" I kicked ass and my body hurts so good!

I have thrown caution to the wind a few times (not since things really fell apart in August) but if I was clear by the doctor's I would get on the treadmill to walk, the music thumping in the headphones and my body would just go I would jog just to feel that familiar cleansing pain. In the end it was never good but worth it at the time. I will never forget the first time, after released from my hysterectomy, tears rolled down my cheeks for a good mile. I was so happy to be running again. That was two years ago this month. I cried because it felt so good, but also because something inside me knew that wasn't going to happen for a while.

I miss ME. What happened to Sarah the independent, strong, confident woman. Sarah the wife - I am not an equal part of the team, I am a patient, requiring care (wonderfully done I will add), our sex life is nonexistent or as I say I am broken. Its hard to have much intimacy when the roles become caregiver/patient, when it hurts to hug or even hold hands. If those things hurt, I will spare details of how other more intimate parts of my body feel.

Sarah the mom - this is the most painful. None of us are ever perfect parents, its just not possible but mom in severe pain, repeated surgeries, pain meds, seizures - doesn't leave much left. In addition, they have less of their dad because while we should be caring for them as a couple, he is busy being a single parent and taking care of me, out of town dr appointments, lab work, acpuncture, therapy (so I can learn to cope with all of this), picking up meds, trying to get his hours in at work despite their needs, my needs, being up in the night with whatever my problem is, make ends meet with my reduced income. His list never ends. I don't know how he does it.

My role as a daughter, sister, granddaughter, friend - well I think that is wrapped up above. I try to be involved, be available, supportibe when they need me. The reality is I am just not capable. Where is my drive to succeed, my optimism, my style, my toughness, my career, my hobbies, my body.

I try to work from home - it isn't happening. I tried today, 10 minutes and back to bed. I have no leave, haven't in God knows how long. Days like today, the past week, the disease, the pain is winning. I can't do it. I lay here and wonder how long I put in sick leave. It is bad enough having no leave, no disability - what about the work I committed to complete? I have always been proud of my work ethic, my ability to always meet the deadline. I was synonymous with dependable. THAT word and my name have long since disconnected. Having Sarah do something means disappointment, missed deadlines, minimal quality performance. Everything I always was and always strove to be is GONE. I am THAT employee, that person that I wouldn't want to deal with.  I don't want to give it up, I love everything about what I do. How and when will I know if my body can continue to support that dream?