Today is Rare Disease day and although I have been struggling the past couple of months I couldn't let the day pass without making a post. It is, in of itself, an update of what has been going on the past couple of months as well as a reflection of what it is like to have a rare disease. 

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When you hear hoofbeats, think of horses, not zebras." This is a phrase often used in medicine to emphasize that common conditions are more likely than rare ones.

For 2.5 years prior to diagnosis I was subjected to every test under the sun except for the one simple blood test that would have led my providers in the right direction of what was actually happening to my body.

In fact, there was one particular instance prior to official diagnosis where I had researched my symptoms in depth and approached  one of the Doctors I was seeing at the time about the possibility of having Systemic Sclerosis. It was immediately dismissed because the medical system isn't designed to spot Zebras. 

With that being said, a lot of people have been asking me the question, "How are you doing? How are your appointments in Tennessee going? I have been having a hard time answering that because to understand the depth of what those appointments mean to me you need to understand what it has felt like to be a Zebra  in a Horse Happy System. 

These visits are the catalyst that has helped me process my past and truly embrace my future. Those days of being at Vanderbilt hold a place in my heart for good and for bad, for fear and for relief, for discouragement and for hope. It is a place that is both a beginning and an end. 

This disease is highly individual. How each person presents and progresses depends entirely on their body, how it interacts with itself and other outside stimulants. New issues can arise that are difficult to get a handle on or sometimes it's something easy and manageable. 

But once the Scleroderma Fire is lit, it is hard to put out. 

In my case a lit Zebra fire looks a little something like this:

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🦓It looks like having a broken rib. Yup- you heard that right, a broken rib. ❤️  It looks like being evaluated for Osteoporosis because this is the second random fracture found in six months for no apparent cause. 

🩵It looks like being so grateful that your momma felt inspired to jump on a plane and come see you even though no one at the time knew your rib was broken. You feel so grateful that she stayed six weeks which is the exact amount of bed rest needed for a broken rib to begin to heal.

🦓It looks like going 4 months to actually find out you have a broken rib since 99.9% of doctors don't understand the complexity of your disease and even when you tell them it hurts right here (pointing to your broken rib) they say “I don't know why that would be hurting,” and then proceed to do nothing. 

🩵 It looks like a few caring doctors who don't understand but go the extra mile to try and understand. Such as when they see how weak you are, hear crackling in your right chest and see something unusual in your left chest on X-Ray. 

🦓It looks like PFTs and High Resolution CT scans every six months to make sure your lungs are not Scaring.  It looks like watching your FEV1 drop down to abnormal levels in the last six months and no one can yet tell you definitely “why.”

🩵It looks like amazing family who are willing to host you while you visit your Specialists in Tennessee even when they are in the midst of a trial themselves. 

🦓It looks like having a collapsed Lung Lobe. It looks like struggling to breathe with very little exertion and a  new string of questions forming in the doctor's head. “Did it come from the 
Pneumonia she had? Is it coming from her Heart. Her Lungs? Is it coming from this uncontrollable Gerd aspiratiing into the lungs?” They don't know until, you guessed it, more tests.  

🩵It looks like a kind soul not leaving you hanging and in the meantime giving you a breathing machine in an effort to strengthen your lungs. 

🦓It looks like having test results that say Reduced Blood flow to the entire upper portion of your Heart with accompanying symptoms such as a heart rate that shoots up to 170 just from walking up your stairs. 

🩵It looks like being sent for a Cardiac MRI to see if your rare disease is scarring the vessels in your heart but while you wait for that, being blessed with a few new medications that help this symptom significantly. 

🦓It's looks like getting Referred to a Bone Rheumatologist, a Joint Rheumatologist, a Scleroderma Rheumatologist, a Regular Rheumatologist (yes apparently there are a lot of Rheumatologists). It looks like getting a Scleroderma Heart Specialist, a Scleroderma G.I. Specialist, a Bone Density test, and a Joint Ultrasound. 

🩵 It looks like being blessed with the opportunity to hold your family a little bit closer as you travel to Tennessee together and have the absolutely best time in between all your pokes, prodes, talks and tests. 

🦓It looks like being diagnosed with POTS, PACs, Peripheral Nerve Compression in both arms. It looks like being diagnosed with Proximal Muscle Weakness, Inflammatory Arthritis, Bilateral Back Fractures of the Lumbar Spine, Grade 1 Spondylolisthesis. Esophagitis, Gastroparesis, Malnutrition, Gastrics, Celiacs, Hashimotos, Raynaud's, a Thyroid Tumor. The list goes on. 

🩵It looks like being so grateful for medical advancement, without which you wouldn't be alive today. 

🦓It looks like weekly Physical Therapy and weekly Occupational Therapy to maintain strength and functionality. 

🩵It looks like meeting amazing people from all walks of life since you have the opportunity to interact with so many doctors, nurses, health professionals as well as many rare disease patients across the world.

 🦓 It looks like having consistently abnormal liver and kidney labs which no one knows what to do with other then “watchful waiting” since they aren't bad enough for the suggested therapeutic range yet.

🩵It looks like doing a full 180 on your eating, sleeping, working, and heck, even dressing habits. Yes- I wear three pairs of socks, gloves, and socks on my knees but I'm reaping the benefits of holistic approaches. 

🦓 It looks like a girl who is beginning to no longer recognizes herself in the mirror because of the Subcutaneous Fat Loss of her mouth and face due to Scleroderma. 

🩵 It looks like seeing the kindness and compassion that comes out of people when each of you are able to open up and see the scars that we all hold. 

🦓It looks like feeling defeated some days, some, weeks, some months or some years. Hunkering down and retreating into yourself for preservation and protection. 

🩵 It looks like someone who feels the utmost relief when that friend chose the exact right time to visit you so that you could see their spark for life and it could reignite the spark in yours. 

🦓It looks like being afraid to make a post like this because you are afraid to show your stripes. Your afraid to be different. Trust me, you would do anything to just be a horse. 

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So the question still stands. "How was Tennessee?" How do I explain to someone for the first time I understand and see, really see, what it means to have a Progressive Systemic Disease. How do I explain that I am completely optimistic and absolutely terrified at the same time? How do I teeter the line between denial and despair? 

How do I accept that I am a Zebra?

I accept it by looking around. At first glance it may look like I am surrounded by Horses and that no one has stripes like me. But upon closer examination I see many Zebras surrounding me. Zebras who don't feel like they fit in with the Horses around them Zebras who have struggles, mentally, physically and spiritually. Zebras desperately trying to fit in, lessen their stripes, or just trying to get through one more day.

Looking around gives me hope. Looking around  gives me faith. I see Zebras all around taking one step at a time. Feeling their pain but not allowing it to consume them. Zebras who are getting up each day and trying, then trying again. Zebras who are serving others and are compassionate to those around them. 

I see you allowing the Stripes that Jesus suffered for you to succor, support and heal you and that keeps me going. 

Having a rare disease or being a Zebra sounds just how it looks. It is black and white. It is good and bad. It is happy and soul crushing. It can give you the proudest moments and completely humble you. It is light and it is dark. 

So when I hear hoofbeats, I don't think of Horses. I think of Zebras. We all have stripes. We all have pain, and we are all here on earth trying our best and I wouldn't be here without the encouragement, love and support of all of you. 

Being a Zebra is just life. And I'm grateful for every minute of it. 
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#sayscleroderma #rarediseaseday2024