The Francis Family Foundation, generous CaringBridge donors, are honoring supporters like you by doubling all donations to CaringBridge, up to $25,000. Make a donation by December 12 to be counted.
My journey for a cure
Sep 12, 2017
Welcome to our CaringBridge website. I suffer from a variety of severe auto immune diseases to include Chronic Inflammatory Demyelinating Polyneuropathy with central nervous system involvement (CIDP) . additionally my body creates antibodies against the nucleus and mitochondria of my cells causing a RA/Lupus crossover syndrome and Primary Biliary Cirrhosis. I have recently survived an extremely rare condition called Superior Mesenteric Artery Syndrome and I know God didn't allow me to be in the 66.6% to survive to let this kill me now. I have been unable to work coming up on 2 years this December but I sure went as long as I possibly could. My unstable gait, sensory loss, pain and numbness prohibit me from doing so any more. I'm not sure when I would have time anyway as I receive so many treatments to include twice weekly Plasmapheresis and rituximab infusions to name a few. Although I am blessed with health insurance through my husbands employment We have approximately $20,000 uncovered this year so far and need just as much for out journey for a cure. We are in the process of planning a trip to Chicago for a treatment that will more than likely cure the worst of my conditions (CIDP) and will need several flights back and forth for my husband and myself and 5 to 6 weeks in a hotel before I am can return home not to mention all the other living expenses that come with extended hotel living. I will spend about 3 weeks as an inpatient however during the period of having had my entire immune system wiped out before the actual transplant the hospital is the worst place for me to be and will not be allowed to stay in the hospital during this time. ( more germs in a hospital than anywhere) The hospital has hotels that work with the patients and understand the needs of a sterile environment but that doesn't come cheap. $20,000 is actually not as much as we actually need to cover current expenses for just medical care and all we will need in order to have the opportunity to receive this transplant but enough to make a tremendous difference in this struggle. Every $5 donation adds up and makes a difference. Imagine the stress on my husbands shoulders right now. We have always been the financial helpers and now we need some help too. Any day you feel inclined to skip that latte and help it is appreciated more than you can imagine. And if you are unable please remember us in your prayers. Thank you so much and May God bless you all! family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.