As I mentioned in the beginning of this BLOG, I knew that there would be days when I would not post, but, I never imagined 'strings' of days that I would not post-- but, RAD does not follow schedules or rules... so, I am having to learn, that the new normal is to not plan "far in to the future"-- due to the disappointment it may and will cause when the activity is cancelled due to RAD flare or unpredictability of the disease.
Quick update on where I have been. Cimzia, the newest bio med I was taking, decided to not be my friend after a very short visit. I am now in a holding pattern of waiting for the insurance company to authorize Orencia. So far, we are one week in to applying for the Insurance auth, and the PA at the Doctor office, expects it could be another 10 days or so.. so, what is one to do? Basically, I have been homebound, unless Tom or someone else drives, and I am having to resort to pain meds. I still have a small supply of methothrexate, so, that is the only drug that I am using to prevent RAD damage. Stinks... but, so does RAD. BUT-- the positive I take from this, I have a wonderful RAD lovegiver in Tom, I have an excellent support system, and I have an excellent team of doctors. I can't ask for much more, and am using the 'down time' to research and catch up on reading, etc.
This week, specifically yesterday- one of my support system members received the news of their first denial in the Social Security Association (SSA) process. Actually, this is the second such person in "my network" to get "the denial" letter. See Hurt Blogger for how she reacted to the news.We all expect it, we all know about it, but still, to actually receive it, caused a "sucker punch" in everyone who surrounds that person in support. Our motto-- One for all, and All for One... we each know and felt the news... not as harshly as the one who actually got the letter, but equally upsetting... and the comments on facebook were fast and furious towards a system that is inadequate and most definitely another one of the most problematic processes for those who desperately are seeking help and who are most definitely in NEED of the help, and deservedly so. I don't say this because the person is a friend of mine and in my support system, but I say this, because I hear daily of the struggles to get assistance from SSA. It is a daily nightmare we all endure, and dread the day that we, too, receive the first rejection letter. Because, you see.. it is a known fact, that you WILL be denied the first time. So, why are those of us with Chronic Illness put through this? I truly don't know. The next step, is to get a lawyer or an advocate to help on your behalf. Why does it come down to this...? Again, I have no answers... but, my downtime will definitely be used in the next few days to research this as my additional newest mission. Awareness of RAD and Chronic Illness, and let's add to it, awareness and understanding of the SSA process. As mentioned, in the beginning- I was "blissfully ignorant" of RAD, with each day, I become more and more savvy and intelligent as to what RAD does, and as to what Chronic Illness does to some of the most valuable members of our society. It seems never ending, RAD is a disease, a systemic disease, as are a lot of chronic illnesses, and in addition to fighting the disease we have, we are constantly fighting the "system" set in place to 'assist us'... whether it be health insurance to SSA to receiving adequate health care--- it seems that all of the systems have one thing in common... failure to assist those who really need it.
My comfort in my suffering is this: Your promise preserves my life. Psalm 119:50
Blessings - Kim
No comments:
Post a Comment