I have been dealing with CIDP for 15 years (since I was 22) and now I have been married for 4 years and a father of a 3 year old. Six months after che was born I reluctantly went on SSDI perwmantly and was accepted right away…not really that much to celebrate. Since then our income has dropped to almost half and medical bills and prescriptions have really made our live unbearable financially. I feel that thyis is all my fault and if I could just do more we would be in better financial standing. I love my wife and daughter but as we all know some days are just too much to keep a smile on our face and keep an optimistic outlook. I toyed with writing a memior but my motivation is sub-par most of the time. Extreme pain and the problems with opiate side effects got so bad that I voluntarily weaned off all pain meds and after 4 months my mood do to my pain and inability to do what I should be doning around the house become such a burden. I have seen an increase in resentment when I’m tired and unable to lend a hand but conversly when I feel better I do way too much and pay for it by being worthless the nhext few days. Our marraige has just started and I am afraid that in ten years what will she think then??? I don;t want her life to be miserable because of me and honestly all of our problems revolve around my disease. I am in a self esteem quandry and even thought SSDI has a work ticket program I don’t know if I can handle more responsibility when I’m having such a tough time now. I pray that everyone here get the support and love they deserve, we desperately need it. PM for more specifics because this is truly the tip over the iceberg. I’ve never felt such an identity crisis to this degree before and yearn for even small doses of happiness-but they are few and far between these days. I can barely afford copays now and I a relapsing and losing more motor function faster each week. I know treatments are available but how can I afford them and sill pay our houshold bills??? Are there any counselling sites that specialize in medical/financial problems due to chronic diseases. My wife want the old me back and I know that will never happen, as I progress and lose more muscle and nerve conductivity I continually change.
I’ve already lost two younger brothers and my parents divorced after 32 yrs of marriage so my support system is also in crisis. ny pointers or suggestions?