A.S. Face 0065: Sara Sheibley
Growing up my sister was the one with all the issues. Anxiety, scoliosis, acne, shin splints and our Mom swore she was going to take after her. My Mom had been diagnosed with thyroid issues, Diabetes, and what we now know was Fibromyalgia. I seemed to be skating through life with some weight issues and I was super clumsy, but nothing major. A few broken bones and a broken nose were added to my long list and the doctors always said it was just because I was a klutz. Around the time I hit puberty I started having bad knee and hip pain with some mild swelling. Doctors swore it because I was becoming a woman or it was just a little water on the knee. I endured draining and cortisone and finally a few pins to hold my ever floating knee caps in place.
By 18 – 19 years old I was fairly much a mess. I could never play sports in school or exercise for any length of time, unless I was swimming. Chronic lower back pain, knee problems and sore hips were suddenly attributed to my job cleaning houses. Really I preferred to be bending over because it made my lower back feel better. The years went by and I had begun to have chronic pain in other parts as well. There was this pain in the middle of my back, between my shoulder blades near my kidneys, yet never an infection. I had theses weird knots under my skin that hurt when someone pressed on them. I had bladder pain and bowel problems that I was continually plagued with although no one knew what they were. The only time I felt normal was when I was pregnant.
After my 3rd child’s delivery ended with a placental abruption leading to numerous surgeries, lots of “female” issues and more pain… D&Cs, biopsies, lab studies… I had to have a partial hysterectomy. Still I had pain and through an unusual test a specialist wanted to run, they found out that I had an abnormal left ovarian vein. It was several miles long. I went in for a pelvic embolization that was going to make everything better. However, the pain continued and eventually I was diagnosed with abdominal cysts. Out came all the girlie parts, half my bladder and a slew of abdominal adhesions. Now the doctor thought I was going to be all better since during this time I was diagnosed with Crohn’s and Interstitial Cystitis, Vulvodynia, pelvic myalgia, Lichen Sclerosis and some really odd allergies. He thought for sure that treating me for all this and “fixing” all my other issues would be the cure all.
Still, I suffered with the terrible back pain, knee pain and swelling. All I ever heard was “lose weight and you’ll feel better”. So I did and lots of it. Then I was in terrible pain all the time. I started to have horrible headaches that lasted weeks at a time. I was referred a really great neurologist who on my first trip in to see him, looked at my MRI and said, “good news, you have a brain”. He recommended I have some tests done for Lyme’s disease and several other illnesses as well as heavy metal poisoning. The Lyme’s came back positive so he treated me for that and we did some nerve conduction studies. I had some damage to the brachial plexus which was causing swelling of the occipital nerve. That led to a nerve block. So for once I was fixed. I had grown accustom to ignoring the back pain.
Then, one night about 6 years ago I got home from work, laid down on my couch and went to sleep. That was every night for 2 weeks. I couldn’t move. My back hurt, my body ached and all I wanted to do was sleep. I went to see my pain doctor and he referred me to see a rheumatologist. Lots of blood work, 1 MRI and x-rays later I was diagnosed with severe Ankylosing Spondylitis, Fibromyalgia, Dysautonomia and Acid Reflux. Since my diagnosis we discovered I am allergic to NSAIDs so that cut out the first line of defense. I went on Enbrel but the numbness in my extremities grew worse. Then Humira, which did nothing for me or my pain. I fell a few times (they thought because of the numbness) and had to see a specialist. Add to this ever growing list of issues, osteoarthritis in both of my feet, plantar faciitis, and two busted stabilizer tendons. Then I went in one day to see my doctor because I couldn’t feel my hands, my feet or my face.
Time for drastic measures, IVIg was recommended. It helps both neurological issues and can do wonders for arthritis. To say I had a reaction is mild. I ended up in the hospital with aseptic meningitis, hemolytic anemia and feeling close to death. Sadly my AS and neuropathy felt better than it had in years. So… Now I have several new diagnoses: Small Fiber Auto Immune Polyneuropathy, Sjogren Syndrome, Tubular kidney damage, Auto Immune Hemolytic Anemia and Lupus.
I’m still fighting the fight. I have mild heart issues caused by an elevated hemi-diaphragm. There are lung issues that everyone basically blows off with the sentence, “well people with your conditions…” Basically, they’re here to make life tolerable even if my quality of life is crap. Recently I had a falling out with my Rheumatologist because he told me while I am HLA-B27 positive with severe spondylarthropathies and sacroiliac involvement; I can’t possibly have AS because I am a female. I need to say a huge thanks to my AS friends for getting me through THAT without me going to jail. It did put me in a very negative spot but through each adversity comes knowledge and I am even more prepared to meet my new doctor, armed with all the correct information I need to have my case heard.
For now, each day I get up (although it’s truly difficult to get out of bed each day), get my kids up, go to work, come home, cook dinner (the hubby helps out a lot), spend time with my family then go to bed. I currently take no medicines for my AS. I do take diuretics for severe swelling of an unknown nature and a cholesterol medicine. Recently I was started on neurontin for neuropathy and let’s just say that the joints don’t really like feeling things! I have tried eating a no dairy, low/no sugar, low/no gluten/starch diet but it was fairly unsuccessful in the pain/swelling department. For now I maintain and that’s all I can ask for. I’m sure that my story will change and grow as I get older, just as everyone else’s has. For now though this is me. My struggle and my war.
Every day is a battle but for now I’m winning. I’m alive.
Columbia, Maryland United States of America