Changed my picture to reflect the chemo hairdo!

August 15, 2011 at 12:29 pm

Sharon – Yes, I am so happy this will knock out both the Sjogren’s and the CIDP. Sjogren’s is where the immune system attacks the body’s ability to produce lubrication. For most, it means chronic fatigue and dry eyes and mouth. For me, it is mostly in my joints causing osterarthritis. I can’t get any of my rings on anymore – my knuckles are huge! And while it will stop the progression, I will have some permanent damage from that … but as you know, my nerves have a great chance of repair!!! So all is good for me. Jennifer, who has the CIDP and RA, went in today for her mobilization … she is doing well also.

Clare – I requested the application and information from Paula, Dr. Burt’s nurse. I didn’t need my doctor’s approval, but he thinks this is a great program and so he contacted Dr. Burt directly and helped me. After my application/medical records were received and reviewed, I was invited up for an evaluation. It took two different trips for evaluation before I was accepted into the program. The neurologist associated with the sct program felt I had not quite met all the FDA requirements for the clinical trials so I had to go back home and try another approach. But when that also failed, I was accepted. I have a federal bc/bs plan and Northwestern took care of coordinating all the insurance issues for me. I am getting all the medical paid but not my living expenses while here in Chicago. I was offered a free room, but it is small and not nearly as nice as the Seneca, so I declined and am paying $89/night to stay in a 1 bedroom small apt. It has 2 queen beds in the bedroom, a living/dining room, 1.5 baths and a small kitchen. But, again, there is free housing available. I came for my first evaluation this past Jan, then back again in May – got accepted, then came in July to start the outpatient stuff. Tomorrow I go into the hospital for 17 – 21 days. Hope this helps you!