Darlene Nelson

First post: Jun 27, 2019
Up until the past few years I was a vibrant Mom, grandmother and ER Nurse. I had been diagnosed with Lupus in 1989 shortly after graduating nursing school and starting my first job. My diagnosis only came after I was told it was 99% sure I had disseminated lymphoma. I was in my 20's and terrified.  I didnt want to die.  I was eventually diagnosed with Lupus after developing multi organ involvement.  I was however,  hopeful and sure I could live with this. It was surely better than lymphoma, a diagnosis that had crushed my Mother's heart.  After a few months of being fairly ill with my first flare up of Lupus I did fairly well. I would have what I called grumbling disease but I could handle it. I always pushed forward. After all isn't that what strong people do? I now know I choose denial when faced with my diagnosis.  I didnt want to be a victim. Fast forward all these years later and I now know all the while the autoimmune disease was slowly laying down serious injury to my organs from vasculitis and inflammation.  Denial had been a poor choice. One I would regret.  After perforating my bowel in 2011 it was discovered I had vasculitis and acute on chronic inflammation throughout my retroperitneum and bowel. My mesentery and omentum were solid sheaths of fibrosis tissue. Yet no one made the connection even then that this was Lupus. I recovered and went back to my busy, stress filled life of being an emergency nurse, running my own medical- legal business and raising my awesome son. My husband had left us only months prior. My son was my rock and source of a reason to hurry up and get well after the surgery.  In 2013 just after starting a new job I developed double vision. MRI showed lesions in my brain. What? How had those gotten there and when and what was it? Well, those answers would not be answered for 5 more years. You guessed it, it was again Lupus. But first I would be diagnosed with multiple sclerosis.   In 2015 I started recognizing my brain just wasn't working right. It was like I had trouble turning my brain on. Complex tasks became more difficult to carry out in a rapid, organized fashion like I had always been able to. I would forget things, search for words, and just wasnt as quick as I always had been. I went to see Neuro and based on now worsening lesions and a positive lumbar puncture the diagnosis of MS was made. I was relieved. There were great new medications that treated MS and I had insurance so I could get them for a low co-pay. Great, no worries. I forged forward. Then i got worse. Had a seizure and was so weak and fatigued all the time. My job was less than understanding and despite intermittent FMLA i soon lost my job. It was the first time in 31 years i had not worked and did not have medical insurance.  Life got very tough.   My son took over and was soon within 2 yrs, paying to support his Mom. It had not taken long to exhaust my savings.  It was now 2018 and I was in horrible pain, loosing the strength in my legs and arms, having difficulty speaking and spent most days in bed. I considered suicide but would never do that to my son. I was finally broke enough to qualify for the free county, medical care program. The program was through the University Hospital System I had worked for over twenty years. My best job and proudest experience at a Level I, academic center. I knew the excellence of the faculty Physcians I would be seeing and was hopeful.  Finally, treatment and maybe I could get well again. The problem is the program serves so many in need patients that it is overwhelmed and very slow moving no matter how sick you are.  I did get a repeat MRI and was now discovered to have lesions throughout the white matter of my brain and spinal cord. I also had a lesion on my brainstem that was not consistent with MS instead it was consistent with Lupus vasculitis.  I had just joined the less than 20 known cases of having both Lupus and MS and I was deteriorating. University was not willing to start medication as the medication for Lupus would worsen the MS. They wanted me to be seen by the once monthly visiting Neuroimmunologist. Problem was someone made a scheduling error and I missed her once monthly visit. By the time i could get another appointment my Care Link would be expired and i was no longer qualified because i had started receiving disability. I have to admit God had been unbelievably good. I had recieved SSDI in record time. The Lord provided through these long months.  Now I was once again without medical coverage. I had been restarted on Plaquenil that helped a little. But I still had the awful intense burning, prickly feeling under my skin anytime I showered or dressed, weak extremities, joint pain, migraine and more. I was able to have about two productive days a week after which I would be unable to get out of bed for two days. God was graciously still providing legal work so I had work to keep my brain active and engaged. Everything I had learned after 31 years as a nurse was still inside my head, thank God.  Then I started researching mesenchymal stem cell transplant.  I read all the peer reviewed literature,  listened to expert conferences and learned the procedure showed remarkable hope for both Lupus and MS patients.  In Europe and England it is widely used as a nearly curative treatment regime. Here in the US it has marginal FDA approval and though supported by both the MS and Lupus societies it remains only available at a few major centers and otherwise at private very expensive clinics. I knew however, I wanted this procedure. Really it was my only hope. Otherwise I would likely not live much longer.  I currently am trying to raise the funds through Go Fund Me to get one treatment.  I am faithful God will provide.  I will get there. I will get well and make it to the Cher concert in December with my friends.  Until then I will Journal my progress towards this goal and God's goodness.