I recall the day, almost six years ago, when I observed the liveliness of joy in one who paraded around in a pink frilly skirt, smiling with merriment while wearing her best pink lipstick among the array of hot pink decorations. Such an individual was smitten by the layers of adoration from those who shared her special moment. A moment in which an age had arisen that would propel her into the best years of her life ahead. Especially at a time when the idea of living life to the fullest was the iridescent theme that followed her radiant path beyond the upcoming horizon. The reflection of such a day under the colorful mosaic of adornments would have made one think they were in the presence of a young one’s princess party. Yet, to one’s surprise, that “young” girl, the one with a spark in her step while striving forward with an intense jubilation, was myself as I reached the age of 40.
Who would have guessed as I held up two separate keepsakes given to me on that day that both exhibited the quote “She leaves a little sparkle wherever she goes,” would come to fruition while being tested in the unexpected years to come.
Venturing into the first 12 months of my 40’s came with a newfound zest within my existence, as many would describe those years as the prime best years of their life, right?! Yet the hurdles I came upon during the sprint into my 40’s seemed to bestow upon me more participation ribbons than a middle schooler in during track and field day. Those participation ribbons were the evidence that one day my body woke up and decided it would never be the same. In retrospect, I really should have won a gold medal for the continuation of showing up and rising up at every various course my life took.
The debilitated awakening of my being began almost to the day a year after my big pink-filled-let’s- celebrate-you-turning-40 jamboree. The dismantling of my being arose as I laid on my abdomen while my entire back side burned like a match being lit over and over from my skin being exposed to every allergen there was. This was due to the weeks on end of my body transforming into a welt and bruised covered mess with many moments of me itching myself like a rabid animal while watching parts of my body swell. Anyone ever drive around, then have to pull over to drink what seemed like a pint of Benadryl to counteract the swelling in your lips from the car exhaust in front of you, or have 911 called to your employer as your body seemingly rejected a food you were able to eat a few days prior? Or better yet have allergic reactions to the sun, a sensory overload, or even changes in temperature. That’s where my unexpected first participation ribbon began.
That ribbon was bestowed upon me from the allergist who also had to epi-pen, Benadryl, and prednisone me as I went into shock on his table due to the reaction from allergy testing. His response after realizing I was allergic to 51 foods was “I don’t know what you are going to eat.” These food allergies on top of my already diagnosed Celiac disease from 10 years prior, in addition to reactions now to all trees, the sun, animals, and detergents (among many other elements) led me to proudly, yet apprehensively, hang my participation ribbon for Mast cell disease on my wall.
Mast cell disease, what is it?
Mast cells are a type of white blood cell that is found in connective tissues all over one’s body that will immensely overreact when triggered by an allergen or an alteration in one’s environment. Those triggers can lead one like myself to have immediate moments of swelling, welts, tightened airways, itchy skin, wheezing, excruciating headaches and even anaphylaxis. I like to picture my mast cells as a normal little fun guy having a nice day in my tissues until something interrupts their mood, then boom, the guy changes like the incredible hulk. The joy of this is a lifetime of vials of meds that help calm those little cells down, if it’s not too late, as well as a nice little medicine bag I carry around like a traveling pharmacy filled with any allergy medication one can think of.
No sooner did I finally come to terms with my first rare disease when I found myself sitting in the office of a pleasant new doctor at Barrows Neurological clinic just 2 months later. This moderately knowledgeable gentleman descriptively summarized the need for my second participation ribbon on what seemed like now the track and field event of rare diseases. Here I was, 3 weeks into what was arguably the most agonizing pain I have ever been in. A new affliction so deep in my back and legs that it felt as though sharp knives and toothpicks were gnawing at every nerve and muscle I had. After numerous tests were run, it was found that I had a 6cm Tarlov cyst (the size of a lemon) on my left side from the S1 (the base of the sacral bone) that was extending through the foramen (a hollow open space in the sacral bone). Essentially this spinal fluid filled cyst was compressing nerves that extend down the back and front of my leg. It was also found that I had a 2cm cyst forming off the nerve root at the fifth lumbar spine vertebrae, compressing nerves there as well. As tests continued, it was also discovered that I had the same on the right side of my lumbar and sacral area, sizes of 2 and 3cm.
Tarlov cyst…what are they?
Tarlov cysts are spinal fluid-filled sacs that form off the spinal nerve root and affect the nerve roots of the spine, especially near the base of the spine (sacral region). Individuals may be affected by multiple cysts of varying size. Symptoms can occur depending upon the size and specific location of the cyst. Generally, the larger a Tarlov cyst is, the more likely it is to cause symptoms and the longer the cyst remains, the likelihood of nerve damage worsens. Symptoms sometimes caused by Tarlov cysts include pain in the area served by the affected nerves, numbness and altered sensation, and an inability to control bladder and bowel movements (incontinence); if cysts are not drained, they will increase in size, and nerve damage is irreversible.
I recall sitting outside the medical plaza after my appointment, holding back tears, while the words played over and over in my mind, like a record on repeat. “No one will operate on you…this is a very rare case… it is too dangerous…there is not a lot of research on this disease…you will proceed to get worse; they grow and compress your nerves from your low back to your feet.” I cried the entire way home as I somehow pondered the notion of “there has to be others like me.”
As my tears dried during the subsequent days, I mustered up the strength to dive deep into research on what was titled “Tarlov cyst disease” and discovered that in fact there were others like me, even if it was only 4-9 percent of the worldwide population. I began what seemed like an endless treasure hunt upon which I joined support groups, contacted the National Organization for Rare Disorders, and connected with the rare few of us that were now under the thresholds of constant nerve pain.
What I found over time was that there were only two providers in the United States that had studied Tarlov cyst and how to “treat” them surgically. This surgery involved the need to access the cyst from one’s low back side, removing the vertebral or sacral bone, draining the cyst, as one cannot remove them since they are extensions of the nerve roots from the spine, placing a mesh around the cyst so they do not refill with spinal fluid and then place a plate over the now open bone space. Although this does not stop the patient from developing cysts in other parts of the spine, it does stop the growth of the ones treated. 18 months (about 1 and a half years) into my journey with Tarlov cyst disease I proceeded to go forward with this surgery, traveling to Dallas to do so. Yes, it took me 18 months, not due to any delays, but due to the notion that I kept telling myself I was stronger than this disease, I was stronger than the constant pains that kept me from everyday life, stronger than what I knew was to get worse had it not been treated.
On a side note, as I had proceeded forward for my upcoming surgical journey for Tarlov cysts with many appointments to an array of doctors, it would be found that I also inherited the unexpected factors that awarded me my 3rd participation ribbon. This cornucopia of new ailments was certainly not one that was filled with fun things, it was filled with joint dislocations, chronic pain, stretchy skin, beyond flexible joint movement, altered heart valves that can also cause an array of palpitations at any given time, kyphosis of the spine, dizziness, extreme fatigue, like it takes a lot of energy to even shower type of fatigue, and digestive problems, among other rare symptoms. I anxiously accepted what was now part of a fun collection of misfit ailments under my next ribbon showing my unexpected partaking in Ehlers-Danlos syndrome (EDS).
To my surprise, along with more research and numerous medical discussions, EDS goes hand in hand with my prior two diagnoses. Well then, I guess I should feel honored that it was like a buy one get two free kind of deal, I mean the realness of this either hits you like a brick, or it reinforces your inner strength that has carried you this far. Daily I tend to wake up and just hope that they will play nice together until I realize they are all throwing sand around in the sandbox as I respond with “oh this is what we are doing today” and literally just take it with a grain of salt, or sand in this case, no pun intended. It has been a little over two years since my Tarlov cyst surgery, and to say I am better could come across as unverifiable due to an emergence of some newly unpleasant afflictions.
Over the last two years it seemed as though I would tend to get off and on a roller coaster ride that I do not recall buying a ticket for. I can tell you that my need to use a cane 24/7 had decreased a few months post-op. I began to find my footing in a whole new world where leg pain was not “as bad” although it was still there, and I could sit without using my hot pink donut pillow. The 6cm cyst that was essentially in two places, the back of my spine and the front of my groin, could only be drained from the back, half of that little obnoxity remained, so the nerves from my groin down are still compressed. The nerves that were weakened from the cyst never quite came back to full function, but at that point this pain was something I could manage. In my mind I celebrated that at least I was still upright, granted my body was still filled with the lifetime ailments of mast cell disease, EDS and half a cyst with the possibility of them occurring in other areas of the spine, yet I imagined that there was no way it could get any worse…or could it?!
So here I was with 3 participation ribbons that demonstrated the acknowledgment that I belonged to the rare disease community that consisted of lifetime events fluctuating in occurrence within these disorders. I continued to push forward at a medical clinic where I have been employed through all this, working full time, only taking off the 6 months for surgical care and healing and various days here and there for those unbearable moments. With this in mind, I should add that the blessing of compassion that my employer has shown me is more than I could have imagined, and over the last year I am beyond grateful, especially as those unbearable days became more and more.
Over the last year, my existence, as strong as it is, is now competing with a body that is on an autoimmune and functional disorder overdrive. The agonizing pain that I thought I had thrown away like a bad habit, returned, but in a camouflaged form as if it had decided to show up in a new disguise.
Let’s just say at this point I have lost count on the amount of doctor’s appointments, scans, labs, and times I have been to the emergency room. As I attempt to make this new chapter of this story a little shorter than the previous writing, unless I am approached to expand upon any updates, I will tell you that I am tackling life one day at a time. The diverse collection of medical reports and results show that I most certainly am expanding my participation ribbon collection.
I now have new additions of bilateral peripheral neuropathy (with no known cause), the beginning stages of alopecia, altered spaces in the white matter of my brain reflective of a lacunar stroke from September of 2022, memory issues, chronic pain, and my next road trip to a specialist will confirm if I am developing Raynaud’s syndrome. Remember when I mentioned that I am allergic to a multitude of things? That also includes all narcotics and opioids. Now can you imagine going through chronic pain, swelling, numbness, altered coloring in your hands and feet, nerve pain, and inconsistent flares with just your normal over the counter meds? In fact, those support groups I joined online, many I speak with wonder how I am even still managing to get through my days.
When I first started to encounter diseases and ailments I had never heard of or even imagined I would possess as a healthy young woman, I heard from so many that would question how I could not be angry.
Anger, what is that going to do for me? I told myself instead of saying “why me?” I said, “why not me?” Odd, yes, but the universe must feel I am strong enough to stand up, rise up, and transcend beyond what these disorders will do to me. If I am stricken with afflictions that are not even common in my family lineage, I am also stricken with the belief that I need to be a voice for those maladies that I and many others may suffer from. Granted, this does not stop my emotions from emerging as tears still fall in my quiet moments and the reality of my future may bring forth a side serving of sadness from time to time. I feel this is just part of the components of our human nature as we adapt to the challenges around us; in other words, it’s okay to not be okay at times.
What I have found during these moments is that the strength that carried me through my first diagnostic event solidifies the foundation that will certainly allow me to withstand my next hurdle.
That foundation has sparked in me the need to be a voice for those who suffer while also displaying a melodic anthem of inspiration to those who need it the most.
Now returning to where I began, recalling that girl from some years back who had the best years of life ahead of her…well she still has the best years ahead of her because she has learned to create the greatest life-affirming impact she can. That impact means the need to still parade around even if it’s slower than I would like, while I still rock my love for the color pink and embrace the need to enliven the world around me through the testimony of “you got this” to others.
This all while I observe the sign that hangs in my home that states “she leaves a little sparkle wherever she goes.” Although that sparkle has been tested, it has also been illuminated in ways I never expected. Therefore, as I move forward, I will continue to set ablaze a light that I hope will carry others as they too collect the ribbons from the challenges they have faced and together we can find ways to become a beacon of hope to the world around us.