Ten years ago, I started down what was the beginning of a long and exhausting journey. I didn’t know it at the time, but my life was soon to be changed in multiple ways. What started as generalized fatigue eventually moved on to constant stomach aches, headaches, joint pain and hair loss. I was diagnosed with Hashimotos disease, hypothyroidism, and alopecia. I was put on medication, but my symptoms progressed. I started experiencing heart palpitations, vertigo, unexplained rashes, constant muscle pain, insomnia…. One day I collapsed due to debilitating hip pain. I went to the doctor and was diagnosed with adult onset hip dysplasia and a Femoral Acetabular impingement. I needed surgery. Seriously? Where was all this coming from? My body felt like it was falling apart piece by piece, and none of it made any sense. I ate right. I took care of myself. I used to be so physically active. I used to bike 15 miles a day. Now, walking up a flight of stairs is challenging. How is it now that I felt so terrible all the time?
I started seeing one doctor after another. My endocrinologist recommended I see a neurologist, who recommended I see a cardiologist, who recommended I see a rheumatologist, who recommended I see a neuromuscular neurologist and on and on it went. I tried healing through functional medicine. Natural homeopathic remedies. Acupuncture. Essential oils. Supplements. Anti-inflammatory diets. Test after test was run. I became friends with my phlebotomist. I was worked up for multiple sclerosis, lupus, Lymes disease, rheumatoid arthritis, even blood cancer, which sounds awful. All negative. I was called “medically fascinating” more times than I could count.
As time went on, I felt defeated. I was Discouraged. Hopeless at times. And felt so alone in the process. I couldn’t even go to a support group because no one knew what was wrong with me. Was this the best I was ever going to feel? Is it all downhill from here?
This past fall, I started experiencing excruciating shoulder pain. After trying the chiropractor, more acupuncture, and a massage therapist with no relief, I finally went to see my doctor. She sent me to physical therapy, saying I might have to have another surgery depending on what was wrong. The physical therapist diagnosed me with a labral tear and generalized hyper mobility of my joints. A lightbulb went on. A dear friend of mine had suggested I might have this genetic disorder she also had. Hyper mobility was a tell tail sign, and I had many of the other symptoms. This disorder is not well understood by most doctors, and my heart couldn’t take another doctor not knowing what was wrong with me or blowing me off. She suggested I see a specialist in Virginia.
On March 7th, I was seen by a doctor who not only knew exactly what was wrong with me, but could explain how all the symptoms were connected, including the hip surgery I needed and constant labral tears. I was diagnosed with Ehlers Danlos Syndrome type 3, Mast Cell Activation Disorder, and hyper-adrenergic POTS. After some follow ups and some imaging, I was also diagnosed with something called Craniocervical Instability. This is a scarier diagnosis, but I see a neurosurgeon who specializes in CCI fot patients with EDS on July 29th to find out exactly what this means for me.
This past decade has felt sacrificing, contemplative, and deepening. For the first time in a decade, I have some answers. The suffering I have endured has ironically been a constant reminder of all that I have to be grateful for. It has given me an opportunity to spend time in some thin places, and hold both the darkness and the light. Through suffering there has been opportunity for resurrection not only in my journey, but also for those who have journeyed beside me. I appreciate it through the lens of C.S. Lewis, “I’m not sure God wants us to be happy. I think he wants us to love, and be loved. But we are like children, thinking our toys will make us happy and the whole world is our nursery. Something must drive us out of that nursery and into the lives of others, and that something is suffering.”