Like You: Brandi Fabel
I was diagnosed with stomach cancer at six years old. The diagnosis was reversed six months later when they found Crohn’s disease. This was in 1986 so they knew little about auto-immune disease then; even more so than now. I struggled with Crohn’s all the way through to high school. I was bullied by students and teachers who didn’t understand, but it made me tough and compassionate for others. Miraculously in 2004 I went into remission and had about three awesome years of perfect health.
In 2007 I was diagnosed with disc degenerative disease and it went downhill from there. Nobody could tell me why my spine was degenerating so rapidly at such a young age. I was training for a marathon with the Leukemia and Lymphoma Society at the time and ended up on bed rest for five months. I had to drop out, of course. I rehabilitated mostly on my own (after therapists were stumped on how to treat me) using aqua therapy. Things got better, I returned to work full time, but still never felt the same again. With progress and strength being steady over a period of years I was finally back to running 5k’s, trail runs, and lifting weights. I’ve always been adventurous and have never let my illnesses stop me. So I decided to climb Mt. Hood (and then Mt. Rainier) in an expedition with my husband in 2014 with a summit date of May 2016. I consulted with a trainer and a physical therapist, and began my training journey.
Three months into my programming I completed some hill training that I had completed successfully several times before, but didn’t feel well this time. My legs tightened up, my back tightened up, and later that day my left SI joint made a huge popping noise and shifted upwards. I instantly became immobilized. I went to the chiropractor and my left hip was sitting drastically out of alignment jammed up into my ribs. She fixed it and I felt instant relief, but still could tell something was very wrong. When I woke up the next morning I couldn’t move my legs or stand up – I later found out that I had severed two nerve junctions in my low back. I was admitted to the hospital and then to a nursing home. I lived there for seven weeks while I did the normal insurance obstacles of conservative treatment before they would approve surgery (spinal injections, physical therapy, etc). I went on home care in a wheelchair and waited for a surgery date. I don’t wait well, so I waited by going to school online and earning my Professional Personal Trainer’s License. I wanted to understand what was happening to my own body and vowed to help others by learning and educating myself while I was down with whatever this was. Specialist after specialist told me it was an acute injury, but I knew better, and I was determined to find the cause before it escalated again.
On February 9th 2015 my lumbar was reconstructed from L4 to S1 with a prosthetic, a fusion, and multiple metal devices and spacers. The surgeon diagnosed me with rheumatoid arthritis on documentation after my surgery. Finally, a cause that made sense to the effect! After surgery I went to rehab and it was the most successful thing I’ve done to date with my health. My spine was stable and I was regaining strength very quickly despite 7 months of severe atrophy and incredible pain from surgery. I was dead set on recovering – there was NO other option. I had to train my legs to walk again, but they were responding within two weeks of surgery!
I began some anti-inflammatory treatments and continued to have great success for about six months and then the body pain began. Mostly in my hips. But it was widespread. Within weeks I was back to using a cane and having to miss many hours at work. I was taking naps under my desk several times a day and it was progressing. That was the scariest part; an unknown disease was in my body and it was getting worse and there was nothing I could do to stop it. I told my dad on the phone one day, “It’s so sad to know that I’m going to have to become disabled again… this is going to have to become so bad again that it’s undeniable and irrefutable for someone to diagnose it. Only then will I get help.” At that point every single test had come back “normal”.
I knew it had to be an inflammatory condition, but which one(s)? I kept being aggressive with my doctor on a process of elimination and we narrowed it down to Lyme, MS, or Lupus. At this point I was receiving hip injections to keep them from freezing (not moving). And praying fervently for a new diagnosis. RA was no longer fitting the bill.
Finally, after months of testing, I was diagnosed with SLE, Raynaud’s, ankylosing spondylitis, sjorgen’s, and systemic sclerosis. All of which were off the charts high with inflammatory and DNA markers. I went on chemotherapy injections almost right away and started making another comeback. One by one they went into remission; first the sjorgen’s, then the raynauds, etc., but never the Lupus or AS. I’m currently at my maximum dose of chemotherapy and am not showing signs of Lupus remission; so my doctor-team decided to work with me on going to the Mayo Clinic. My appointment is January 5th. I continue to have significant joint pain, muscle weakness, and chronic fatigue. We’ve also discovered a PFO in my heart and a septal aneurysm so there is suspect that the Lupus may be targeting organs, or it could have been there since birth. We need more time to investigate and of course more testing, and I want the best of the best doctors added to my team. I’m hopeful that the Mayo Clinic will put me on a pathway to remission and more relief, although, at least I’m not where I was.
I live every day seeking out the joy in all circumstances the best that I can. I think if I could tell someone with Lupus what I’ve learned most is to find contentment. To some that may sound abrasive, but I learned quickly that feeling frustrated and upset only made my circumstances worse. I have found contentment, and even joy, that for me, while this life is temporary for all of us, the life after is simply a transition to a place where there is no more pain, no more tears, and no more disability. And I have become content with that. I will do what I can while I’m here where there is purpose, and I look forward to residing in a place where my body is renewed and restored.