The story of Michelle

Hello my name is Michelle, I am a 45 year old rare disease warrior … My story, well where do I begin… I recall the day my life changed with an unforeseen modification that would alter my last few years and years to come. The unexpected afflictions began in February of 2019, when after seeing an allergist at Arizona Allergy Institute, I was informed that I had Mast Cell Disease, of course I had suspected this for some time with my list of food allergies, I am up to 51 and my constant moments of rashes and angioedema that occurred daily. Those moments where you are itching like a baboon on top of looking like you just received botox injections in your face, I mean life was never meant to be dull, right?! I began my long term regimen of rescue meds, epi-pen refills and treatments that would hopefully calm my angry mast cells. To this day now three years later, those flares occur less but when they do boy it is like the gates to the mast cells opened and they want to throw a party you are not invited to. Following that rather amusing diagnosis, was a pain 2 months later in April of 2019 that took me to my knees. It was as though a fire had been ignited deep in my pelvic region, traveling down my legs to my feet, that at times I could no longer feel. I gave it a couple of weeks assuming that it may be an ovarian cyst, yet as the tests came back normal I began to think I was delusional until the dreaded results on my MRI. It was found that I had a 6cm Tarlov cyst on my left S1 pushing into the first foramen of my sacrum. Essentially, I was part of the limited few who suffers from painful Tarlov cysts, did this mean I was a VIP now?! The result, was another Rare Disease, Tarlov Cyst Disease. I slowly began to pull the pieces of the words together as I heard the neurosurgeon, Dr. Rory Murphy explain that the pain and nerve damage would proceed to worsen over time and that nothing could be done. Listen, telling one that the impossible exists is like saying go ahead challenge me, and it did, it launched a fire in me that said I cannot be the only one. Here I was now with two rare diseases, diagnosed in two months with no further assistance from those who should be a map of guidance for the rare and unusual. I delve deeply into support groups, letting my voice be heard online, discovering techniques that might just lessen the pain even if by only 10% and uncovered the truth that Tarlov Cyst Disease is no joke. As the months went by, I began to lose feeling in my legs and it seemed as if I was in a constant state of frost as I covered my calves with ice packs daily, just to be able to walk. After a year and at the age of 43 I had to start using a cane. I carried with me my flamboyant tote that housed all my medications just to get through the day as I, one who does not like to give up, continued to work at a medical clinic. As the nerve pain and damage continued so to did the growth of 3 more Tarlov cysts. A 3cm one on my left L5 and a 2cm and 3cm one on my right S1 and S2. After enduring months of persistent and increasing pains that I did not even know could exist in the human body, I chose to proceed forward with surgery with one of the very few surgeons who are authorized to perform surgery for this disease. On December 2, 2020 I had surgery in Dallas, Texas with just one of the very few and almost non existent specialist that operate on Tarlov Cyst. Presently, this halted the growth of the cysts I had, yet will not stop anymore from forming in my spine. Unfortunately, I still have half of the 6cm cyst on my left side in my pelvic region as it has to be accessed from the front and not the back like the others. I can say that the surgery from the stand point that the pain is not as constant, is a success. Yet due to the cysts sitting on nerves for so long, I will always have nerve damage to my legs and feet. I still use my cane on occasion, in fact it has been more often than not due to the increase in symptoms again, which then can lead to an unnerving feeling of what now. As life proceeded after surgery a new erratic level of pains, bruises, loose joints, and bones that like to play this game of let me pop out just to see if you can pop me back in began to commence. So just a before I set my sets on another specialist who after much testing and inquiries into my medical history, I was given yet another participation ribbon in the Rare Disease sweepstakes, Ehlers Danlos Syndrome. Now let me tell you, handling all these diseases are certainly no walk in the park. Remember when I said I have Mast Cell, well that also entails an allergy to all narcotics and opioids, so my pain regimens come from anything natural, over the counter or as I like to say I am best friends with my ice packs and heating pad just to numb the pains even if just for a moment. So here I am now three diseases into my journey when along comes a new friend that wanted to join the party, Achalasia and vocal chord paralysis. Yes, I now have moments in which my food does not go down properly or if at all and when it does the burning feeling in my chest wall is unfathomable. So it would be seen that I now have a few more specialty liquid solutions and measures packed into my flamboyant tote that allow me to swallow and hopefully not cough with an uncontrollable force at night while sleeping, boy that is a frightening feeling, waking up with no air. Yet each day, I will continue to move forward in ways that even surprise me!

As this year approached, I knew I wanted to strive forward in discovering more ways to advocate for our Rare Disease community, rather it be writing letters to our government offices, to sharing my story online and even becoming a stronger voice for those who feel they are alone in their fight, essentially reminding those within these rare disease fights that they are not alone. For myself, I have come to terms with the notion that instead of saying “why me”.. I say why not me, the universe must think I am not only strong enough to take all this on, but I can take that strength to become an advocate on this often inconsistent and peculiar path of Rare Diseases.