Help me get to Mayo Clinic

Dear Family, Friends, and Strangers Whom I hope to become Friends-I'm Niki. I'm 26 years old and have always had a very healthy, active life. At 10 years old, I was diagnosed with Lupus. It never slowed me down one bit until May of 2012. I had met the man of my dreams, John, and we married in a beautiful ceremony in the town we were born and raised in, in June of 2010. By October of 2010, we had purchased a home, adopted two rescued puppies, and were living the dream as my husband worked full time and went to school full time while I worked as a Nanny. Unfortunately, he was laid off in February of 2012 but graduated college as Valedictorian the next month. On May 1st, 2012, I was dog-sitting for family when I was knocked off a 4 foot tall porch and sprained my left ankle. As my husband had been laid off, we did not have health insurance so I decided to do what I thought best and heal it the best I knew how with rest, ice, and heat. After several weeks, I noticed that it was not healed at all and was actually much weaker and more painful. It continued to not seem to heal and I went to my family Doctor. He did an xray and was concerned with the results and advised me that I needed an MRI and to visit an Orthopedic asap. John got a job in his trade field as a mechanic at a local dealership and on October 1st, the very day our insurance became effective, I went to the Orthopedic. He informed me that I had Avascular Necrosis or "Osteonecrosis" (osteo=bone; nercrosis=death) in my left ankle and this had led to fractures in my tibia as well. I informed him that I was experiencing quite a bit of pain in my right ankle also but was hoping that it was from overcompensation due to me other injury. He decided to MRI my right ankle and realized that I did not have the Osteonecrosis in only my left ankle, but my right as well. This caused alarm because we had until this point, believed that I had bone death due to an injury and now this appeared to be from something else. Lupus patients are known to develop Osteonecrosis, usually due to extreme overuse of steroids, which is a commonly taken medication for Lupus patients, but I had never had any sort of long term, or even short term, steroid treatment. I was told that since my ankles were collapsing, my left quicker than my right, that the doc could possibly take a healthy part of my hip and graft that healthy bone to my ankle(s) to prevent any further collapse and hopefully heal my ankle eventually. I then explained that I had been experiencing this same, excrutiating pain in my right hip and should probably check to make sure if my hip was healthy enough to use a graft for my ankle(s)...and other than the pain I'd been experiencing, there's no reason it shouldn't be 100% healthy. That December, we did a bilateral MRI of my hips. There it was. Clear as day. Osteonecrosis in both hips. My ankle specialist didn't know what to say. With tears in his eyes, he advised me to find a Rheumatologist to check out my Lupus, gave me yet another cast for both feet, wrote me a prescription for a knee-rolling cane (which I couldn't afford to rent, much less buy) and referred me to a hip specialist in his group at the office. By March 2013, my hip had completely collapsed and the ball of my femur was dust. I had been in a wheelchair for two months by then, and on April 25th 2013, at the age of 25, I had my first total hip replacement. Since then, I have recovered well with my right hip (with the exception of pain and soreness at times which is still part of the healing process). When I saw the Rheumatologist for the first time in February of 2013, I was diagnosed with Fibromyalgia and discovered that after many years, my Lupus had in fact been in a flare and was put on Plaquenil, which is an anti-malaria drug commonly used for many years in Lupus patients. Throughout all of this time, I've been told that besides casting my legs and staying in a wheelchair and waiting for medical technology to catch up with me, there is nothing else they can do for me. Well, there's one thing.... They can fuse each of my feet to their respective leg, which is permanent and irreversible, and I would just have given up on walking normally, dancing, running, skipping, and chasing around the almost thirty children in my life who mean more to me than anything else ever has or will. Between myself and my wonderful husband, we have 15 nieces and nephews and a two year old foster daughter who has blessed us with her angelic grace since she was five weeks old. She even sat in my wheelchair with me as my Husband pushed during last year's "Fight to End Lupus" walk. She's my everything. And she's so good. She's so sweet. And she's so easy on me when I'm sick from the Lupus and brings me cold rags and rubs my hair as my Mom and Husband help care for her. My Mom lives with my Husband and I to help take care of me, as he has to work 40-60 hours a week. He only gets paid by the jobs he gets . We are very Blessed to have health insurance, however, it certainly doesn't come cheap. I have, after much much much time and research, found a world renown Orthopedic Oncologist in Baltimore, Maryland. I have spoken with his office and he is willing to see me and help however he can, even if it may take some sort of experimental treatment, or some sort of transfusion to revitalize the lifeless areas in my body that are causing my bones and joints to decompose and collapse. John and I have exhausted all avenues financially to this point to keep up with copay expenses, prescriptions, surgery, insurance, and if not for our wonderful and loving and giving family we would have lost our home by now. We struggle to pay our mortgage each month, along with utilities, car insurance, gas, internet, food, toiletries, phone, etc. We allow no luxuries such as cable, new clothes or shoes, household accessories, we do not eat out at eateries or do any extra activities such as movies or things like that. On occasion, we do go play billiards on a pool league at the grace of our wonderful friends and teammates whom treat us to this luxury. The times where we do this are so wonderful to me to actually get out around friends and have fun as opposed to my only other time out being to go to the doctors or pharmacy, wal-mart, mediacl tests, etc. I know this was a long story, but I just wanted to be able to put all of the situation out there to everyone and give a fair and honest representation of why I'm asking for help. Thank you to any and all who read this. Thank you for taking sweet time out of your life to read my story. I pray that I continued to be Blessed and am so thankful to any who find that they can take an interest and help me along in my journey to wellness and independence. I not only want to accomplish this trip, and possibly others just for myself, but for the next person who ends up in my shoes. I don't want anyone to have to go through this painstaking, I'll say "adventure", in the future. If they can help me, then they will know how to help others who end up in the same boat. If anyone has any means or ability to help, even the smallest amount, I will be eternally grateful, as will my friends and family. Thanks so much for reading and hope you all find yourselves with hope, comfort, peace and success in your endeavors,




Sincerely,

Niki Pessoney