I decided to start this blog because I found there really wasn't a good outlet for me to express my frustration, to gripe about the bad days and to celebrate the good ones. I had subscribed to another blog a while back that I thought would be that place - and while I admire the woman who wrote it for all her various accomplishments - her blog turned out to be one of those where she only posted when she was getting paid to shill for some company selling a product or service to those of us in the chronic pain community. And that's okay - I just wish she had been up front about it.
In any case - here I am. CIDP - for those of you who've never heard of it - and most people, including most doctors, haven't - is an autoimmune disorder. It's fairly rare - only about 100,000 people in the US are diagnosed with it. (That's a whole other discussion!) My immune system is basically destroying the myelin sheath that protects the nerves. The removal of the myelin sheath first causes unbelievable pain - and then over time, the nerves die. Nerve pain is one of the most difficult to manage with pain medications - and I am also allergic or sensitive to many of those meds too.
CIDP is progressive, and treatments only work about 60% of the time - if you can get them and if you aren't allergic (I am to one of them) and if you have really really good insurance!
I have my good days and I have my bad days - and then there are the really bad days. Since I live alone for now - most people never see those days - and I try really hard not to whine about it so my family and friends probably don't realize the full extent of what I go through. I decided to do this blog because I wanted a place to vent - and to provide a place for others like me to do the same. Welcome to my world.
We can whine here, we can discuss treatments, and we can celebrate when those good days happen - or at least the less bad days.