Wednesday, June 27, 2012

Even heroes need saving.

I like helping people. Sometimes I go out of my way to make people happy and to do the right thing. It takes more effort, but its worth it. As Martin Luther King Jr. once said "the time is always right to do what is right".   Yesterday I had only $7 in my bank account. I was going to use it to buy lunch but instead I bought benadryl for my wife because she has bad allergies.

A few weeks ago our cat has been acting weird since my wife cleaned a room. It no longer had an obstacle course of unpacked boxes and textbooks. I was reluctant at first to take it to the vet because I didn't think anything was wrong with it but we waited a day too late for our last cat and it passed away. We took the cat to the vet and the veterinarian said that she was fine. I sometimes resent taking the cat to the vet, spending $200 on a healthy cat seemed pointless. But I remind myself that I did the right thing.

I'm a nice guy. I don't understand why life deals me bad cards. I never hurt anyone. If there really was such a thing as karma, then I would never have a negative thing happen to me. Every day I worry what bad news will come my way.

It's been rough this month. Lately bills have been getting higher, as well as the temperature outside. My fingertip on my right middle finger is numb, at least I can still use the rest of it on special occasions.

Today I got a letter from my insurance saying they denied coverage for my new medicine because its "not medically necessary".

"The request does not meet plan criteria for an exception to the preferred drug list. Other medications are available on the preferred drug list. Coverage for the requested medication is provided for patients with a diagnosis or relapsing forms of multiple sclerosis with a documented history of contraindication, intolerance, or theraputic failure of other preferred multiple sclerosis agents suck as Avonex, Rebif, or Copaxone. Information reviewed does not support that the patient has previously tried these agents."

I have been diagnosed with MS since march 3rd, 2003. Since then I've been on the treatments Avonex, Celcept, Copaxone, and Tysabri. All of these medications should have been listed in my medical records which they should have. All medicines I listed either didn't work or did more harm than good. It's very disappointing to read something like this and know what I've been through to find a treatment that works for me. All the money spent on gas driving to infusion centers, all the time spent in doctors offices, all the hours of work I missed to attend appointments. Enduring all the pain from shots and their side effects. It makes me sad to feel as though I've gone through all of this in vain.

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.