This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
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I Am So Frustrated!

I am so frustrated! I have not been feeling well again. That stupid twitch under my left eye is back, just when I thought I was rid of it, it came back yesterday morning. I woke up with a headache this morning, and now I am having problems with my vision. My PCP says that the twitch could be because my potassium is low so he started me on some pills for that. I have been fighting this relapse for a month now. I am so tired!

I went in for my follow-up appointment yesterday with my primary care and he does not think there is anything else going on (i.e. RA, etc.) He said that the interferon from the Avonex could be making me feel this way and that it could be making my relapse linger. He warned me to be careful that there can be many side effects from interferons. By time I left his office I almost wanted to question if it was worth it to take the medication, if it is safe to take. I do think it would be wise to discuss it further with my neurologist at my next appointment.

Speaking of that, I am not sure what will happen now. I spoke with the state today and was told that I had been approved on the CNP medical program which means that I would get medical for one year based on medical need. Then when I got home tonight from visiting my parents, I had a message on my voicemail stating that she made a mistake and that she gave me the wrong information, that I qualify for the spenddown program, which means, I qualify for a different program where every 6 months I have to pay for $1536 in medical bills before I can get medical insurance. My question is how am I supposed to afford to do that off SSDI, pay my bills, support my son, purchase my medicines, buy food, and anything else that may come up? Not to mention, I am trying to get my health back. I hate to be negative and I know that every other person who has a disability and is faced with having to go on SSDI goes through this, but I don't want this life. I want to be healthy, I want to work again. I don't want to live off SSDI for the rest of my life. I have to believe I can regain enough of my health and enough of my life to live a decent life. Because this is not cutting it. This is not the future that I want for me or my son.

I am just not sure how I am going to figure all of this out. I worry that I will have to go without medication or I will have to quit going to the doctor. The problem is that if I quit taking a medication then I get more sick, if I don't go to the doctor then my labs don't get done, I don't get treated, etc. It is all a big cycle. I am sure that this is the same cycle that every person with a disability must go through. As soon as I figure out the solution I will let you all know, so that it is not so difficult for everyone else. What a pain! It seems to me that it would be common sense. You would not be approved on SSDI if you were not disabled. Disabled = the need for medical insurance. SSDI = fixed income. This means there should be some kind of program in place to assist people who are on SSDI to get their medical needs met. Common sense. We would not be on SSDI unless there was a need to be on SSDI.

Okay, so enough of the complaining about the medical insurance stuff. That is frustrating and depressing. I will get more information soon enough in the mail and once I do I will go talk to someone about it. On a different note. My son is away this week. The whole 5th grade is at camp this week. I miss him like crazy. My house is so quiet with him gone. I am sure he is having so much fun. I am really glad that he got to go. It is good for him to get away and be a kid for once. He gets to be in the mountains where he can fish and hike. He gets to be a boy and not think about my being sick. I hope he is having so much fun. I am sure he is.


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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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