I am still waiting to hear that my insurance company approved the medicine for me. Since this is an "orphan disease" with few patients, the cost of the meds are astronomical. The one I am trying to get would be about $1600.00 per month. I have no idea what my copay will be for the drug. There is ONE charity that helps people and the drug company will help with the copay but no more than $800.00 per year. If my copay were a thousand dollars that would be used the first month. There is limited resources here and I am eager to know what the copay will be. I do know that I will not wipe us out financially for a drug that might not even work. I am not sleeping well and at times feel overwhelmed. I continue with the cardiac rehab although at times I have to stop or slow down. Rob has been working all the overtime he can get. It gets dark early now and it seems the days are very long. Somedays are not so bad and others are terrible. This goes with this disease. I hope to be better once on the medicine. They tell me it will be easier to move around then. I still have some post surgical pain and the rehab is not helping. Some nights I have to take a pain pill or I won't sleep at all.
My Christmas tree is not up. I keep going back and forth as to whether it is worth the trouble. I do have lit wreaths and garland Rob put up outside and some decorations here and there. I can't find my merry. I hate uncertainty.
I have most of my gifts bought and wrapped and cards were mailed. I'm going through the motions. I went to a support group meeting that was supposed to be a holiday party. I heard the word fatal so many times I felt dizzy. The speaker was a wonderful doctor who knows my doctor and told me I was in good hands. My sister and brother both called to have lengthy conversations and I visited my middle brother Friday with his wife and grown children. It was wonderful. Life goes on no matter what the circumstances are and I keep telling myself that I beat cancer twice, survived two heart surgeries and pneumonias where I was critical. I have to rise to the challenge and get this under control. Hopefully they will keep finding drugs to buy time until they discover the cure.
Saturday, December 10, 2011
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I am sorry that even after all this time you are still having post surgical pain. It is easy to become overwhelmed dealing with all the complications you've faced and still face. I understand the medicine is your lifeblood, but that it may cost MORE than you can afford. When my husband lost his job he stopped taking his meds. Each prescription runs about $500 each, times 4. That's MORE than we have to spend. We tried getting assistance for the meds but because with Social Security we make more than $16,000 a year, we are NOT elgible. As a result of NOT taking his meds, my hubby got sicker and caused MORE problems for himself. I am praying for you Nelle that your copay will pick up the bulk of this for you. And that you'll be able to start this NEW medicine soon to help you. I have a solution to your being in the Christmas Mood and TREE putting up problem. Get a small tabletop tree, instead for this year. They are easy to decorate and really will lift your spirits. Take care.
Thank you for the card you sent.... every day I send up a wish for you, that it will be a good day and that you will feel better, getting the care you need. We love you.
This is so weird. I was just about to write and say to get a tabletop tree NOW when I saw that your friend recommended the same thing, so I guess that means you better do it. I saw some really nice ones, perfectly shaped which is hard to do with the bigger ones, at Whole Foods yesterday. Then you could have a little fun being creative and decorating your mini tree. As for everything else, those drug companies are just so terrible with their high prices. Do those drugs really need to cost so much? One of my drugs, Voriconozole, costs about $1200 a month. I am taking it to hopefully prevent a recurrence of the fungal pnenumonia that I had twice. At one point there was a snag in my insurance and they were going to make me pay much more than I can afford, and I said that in that case I just wouldn't take it. Luckily, it got cleared up and I now have a reasonable co-payment. I hope if you keep at them they will come around, but I know it must be really hard because you don't feel well. In any case, I hope one of your next blog posts will be a picture of your mini tree and some cute stuff you have put on it. A little project like that could take your mind off of all this other crap.
I'll keep you in my prayers and ask that the insurance company please pay for this medication that is so needed. Keep your head up!
Thanks all for your comments. I thought of the table top tree but the only table in my living room is the coffee table. I have a tiny room. My tree is a slim one and not very big. It's just the effort of getting it down from the attic. You are all so caring and kind and your comments are greatly appreciated. :) Hugs to you all.
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