Sunday, June 8, 2014

And Now We're Back on Track - I HOPE!

I saw my rheumatologist on Friday. Since the company faxed them a form for assistance on my behalf concerning Benlysta, she decided to continue on the road for me to take the medication. It took me waiting two months for an application, two months to hear the medication was not the company's medication and the application was not on file, and me searching two more companies on my own to finally get the right spot. Since I was pre-approved, hopefully this will be approved and I can finally receive the correct medication for my severe lupus flares. I cannot pay $28,000 a year for Benlysta. My insurance won't cover the medication. Without the assistance, I can't get it and will continue to suffer from the devastating affects of systemic lupus.

So now I'm praying this all works out. Problem still exists for my cost of travel to get the infusion since I'll have to go to Lexington to the Infusion Center of the hospital to receive the medication. First month I'll have to get an infusion first, second and fourth week to build up in my system. After that I'll have to go once a month for the infusion. I pay a friend $10 a trip for gas money, which I don't have. The first month will be most difficult as the small amount of funds I have to live on are devoured by medications, rent, utilities, and what is left goes to food.

So now I'm praying for gas money.

Last month was extremely hard financially. I lived on ramen noodles for two weeks. Thank heavens for ramen noodles!

When I saw my doctor Friday, she did an exam of the lesions all over my body. Vasculitis. Confirmed. She was shocked to hear my experience in the local ER. She was also shocked to hear a doctor prescribed 50 mg of prednisone for ten days, no tapering, etc. She said to throw away the pills. I am so thankful I've had experience with this medication and knew it was way too strong and not prescribed correctly. I can only imagine what other people have suffered from incorrect dosage from medications!

Note to everyone: if you are prescribed prednisone and it does not show how to taper down on dosage, don't take it!!

The new medication, Cymbalta, will soon be history. Turns out this medication caused my vasculitis flare. It is also raising my blood pressure by 50 points! Gone Gone gone! For some reason doctors like to give antidepressants to help with the severe pain experienced by lupus patients. I've gained 50 pounds from different antidepressants for this use alone. Once I taper off cymbalta, I'm never taking another one.

I was first given one after my Daddy died, the last member of my family. It was a hard time in my life. Almost 18 years later, they've switched me from one to another to control the pain. Enough.

I'll be glad to rid myself this one, too, because of the cost. One less pill to take. One less expense to have. Thank you God!

I'd give anything in this world to not to have to take medication let alone so much of it. When I was first diagnosed with systemic lupus, I was told it was an expensive disease. They weren't kidding. Treatments are expensive enough without the high cost of medications.

So this month I will not have to fill one medication. It is still a financial struggle. I must choose medication or food at this point. Most of the time I just cut medications in half when there is no money for them. Looks like this month will be one of the "cut pills in half" months.

Unlike most people, I don't go on vacations, buy clothes, buy "wants," etc. I simply pay rent, utilities, medication and food. My clothes are worn out, my trips include grocery, doctors and hospital.

I find it fascinating how people are willing to offer advice on how to save money. Truth is this: unless you walk in these shoes, you truly cannot understand how hard it is.


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