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This is my story:
In 2016, I was so excited about life. I was running and swimming. I finally got that great job at UCSF. I got married the year before to an amazing guy. Life was finally coming together the way I always dreamed. Then soon I started having some pain in my right wrist after doing a some online trainings at work. No big deal, it will go away...But then it snowballed. The pain got worse, spread to my whole arm and then the other side started to hurt as I needed to compensate. Then my neck hurt so badly I felt like I had terrible whiplash. What was happening to me?? Doctors didn't know. They thought I had carpal tunnel, but ignored all the other symptoms I was describing. It got to the point, only 6 months into my new job that I had to drop out because the pain became unbearable.
I had no answers, but during few a few more months of "resting" and I tried it all: yoga, acupuncture, trigger point massage , cbd oil, and more, but my symptoms got worse. Either doctors shrugged their shoulders at me or said Im "stressed" and it is in my head. In fact, One hand specialist examined me and actually said "You are a mystery" and that was the end of his treatment. At least he admitted it! It was a scary and vulnerable time.
Using a computer was tough. Nevertheless, I found other people from the internet who had a similar presentation. My husband drove me to see the specialist they recommended who diagnosed me with the rare condition of Thoracic Outlet Syndrome. He explained that my nerves and blood vessels are being compressed under my collar bone, which causes a constellation of symptoms including nerve pain, dizziness, severe muscle spasms, migraines and more. He excused me from work (since the other doctors didn't believe me and thought I was "avoiding life".) It was such a relief to be listened to and to finally understand what was happening in my body!
After another year of working with a special physical therapist, I got a little better, but still had poor quality of life. When the small slow progress stopped, I decided I needed the surgery that requires the removal of my top rib. That was a tough and scary decision because it comes with many risks (one being a collaped lung). However, I was ready because I knew I couldn't keep living like this if I had a chance to get my life back.
In May 2017, my top rib was removed, two neck muscles were cut (the scalenes) and my pec minor muscle was released because that was also causing compression. The procedure was done by a specialized surgeon at UC Davis, she is one of about 10 surgeons in the world that can competently perform this procedure. That began a long recovery period with indescribable pain, but in time, I got some relief.
However, after more than a year, I still had sharp pain in my arm, centered in my elbow. It is my ulnar nerve or my "funny bone" nerve. When seeking help...I went through another round of being dismissed as a "chronic pain" patient, seen only with a somatic presentation. (Its stress, its in your head, your pain signals are misfiring, etc)
While I was in daily pain in my arm and neck. I wasn't able to write, type or lift more than 10 lbs, but I was able to start running a bit and I joined my local run team.
My quest for answers began again. I was emotional at each appointment because I was repetitively asked to explain about how my daily living was impaired, but then there was no understanding of why. Finally, the orthopedic department ordered new images and found a large mass of fibrous bands compressing and kinking my t-1 root. Another surgery was indicated with a neurosurgeon. This one was more risky because it was exploratory and complex. I had that surgery November 15, 2019. Initially, I lost significant funtion in my hand and the pain levels were extreme. However, I was still getting myself out walking and then I started light running only three weeks post op.
It was then that I made the decision that I will run the 50th anniversary of the New York City Marathon. I was determined and I knew I could do it. The NYC marathon is special in my family because my father was one of only 55 finishers in the first NYC marathon in 1970. I'm from NJ, went to NYU for graduate school and lived in New York City for several years before moving to California. Plus, I have a lot of family there. I started to research charities linked to the NYRRC and found NORD and knew this was what I was meant to do. After four years of dealing with a rare disease, my world view is forever changed. During my journey, I met so many others both in person, and via social media that are battling their rare disease. I feel so lucky that I'm back on my feet and able to run again after all this time. I don't want to ever take that for granted and waste my abilities. This is the year of my comeback. Its been a long time coming, but I'm doing it!! My hand and neck are still not back to normal, but Im getting better every day.
I want people to realize that my case is lucky. I figured out my diagnosis in under a year and had acesss to treatment. Plus, I responded fairly well to treatment, some don't. In addition, I dont have comorbid conditions such as depression or anxiety. I always found a way to feel some kind of genuine joy in something seemingly small, no matter what. Also, I had (and still do) have amazing support. My amazing husband cooked, cleaned, did dishes, laundry, etc. because I couldn't do any of it for years. He drove me to doctors appointments, he sat with me when I cried about being in so much pain. He listened patiently to the sadness that comes along with not being able to participate in daily life. Plus, he gave me the strength to face more doctors even after I was repetitively dismissed and belittled. If I didn't have ALL of that, I definitely couldn't have come so far.
Many people dont have that kind of support and access to top surgeons or the luck to figure out what's wrong! I want to support all the people still in the thick of it. I want to support all the people who dont know it yet, but will face a similar struggle and I want to help get funding for people to find cures to rare diseases. This can happen to anyone and to more people than we realize. Thank you for supporting National Organization for Rare Diseases with me. Just a few dollars can make a difference...
I wanted to note that I was offered an entry to the marathon through the New York City Road Runner's club, but I'm choosing to raise $ for this cause because it is so important to me.