Friday, June 8, 2012

Life as of now

I'm finally on a disease modifying treatment once again. I haven't been on any treatment in over two years.  I've been taking the new, first ever, oral MS treatment call Gilenya (jeel-in-ya). I took my first dose on June 1st, 2012. This medication has caused some side effects in testing, so as a precaution I had to be monitored at a clinic for 6 hours to make sure I didn't have any heart problems.

I tolerate the new drug quite well, except Wednesday I felt very weak and had shallow breathing. I've been experiencing  some added fatigue on top of my existing, day to day, fatigue. I have called my neurologist to let him know I've been having more fatigue but he has yet to get back to me.

I'm so happy I just have to take 1 pill (a very expensive pill) a day instead of getting a subcutaneous shot every day (Copaxone), or a weekly IM injection once a week (Avonex), or a monthly IV (Tysabri). Avonex made me feel horrible, my joints ached and felt like I had the flu. Copaxone hurt and was mutilating my arms. Tysabri was an inconvenient monthly event where I had to drive 2 1/2 hours to an infusion center full of senior citizens with cancer. I was the only patient who was under 50 who had a full head of hair. Needless to say I stuck out like a sore thumb.

Though I worry about the upcoming relapse season (summer), my biggest concern is my wife. She's been feeling dizzy and her legs hurt all the time. I pray that she isn't getting a relapse. She does not have a neurologist, because she doesn't have health insurance. I'm trying to take care of her the best I can. I'm helping her get through nursing school, and I'm happy she made some friends there. I feel helpless sometimes when she feels sick. We harbor a large portion of understanding for one another but just because we both have MS doesn't mean we both know what each other is going through.

She's my brains and I'm her body. She's got better memory and I'm stronger than her, but we both suffer from fatigue and motivation.I still have unpacked boxes from when we moved into our house back in August. I get disappointed with myself when I see how messy our house is and I'm too fatigued and lack the motivation to clean.

I wish my doctor would prescribe me my past prescriptions, since my general practitioner retired I haven't had any pain pills, sleeping pills, anxiety medication, or medicine to fight my chronic fatigue. Maybe I should just break down and pay a doctor who doesn't accept my insurance to treat my MS symptoms that my neurologist ignores.

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