My Story of Scleroderma
A picture is worth a thousand words which puts this page at 1,016 words thus far. As you can see, basically what happened is it literally almost cost me an arm and a leg for a phone upgrade and some home improvement.
All jokes aside, you see the picture on the right? This 140 pound August 2014 representation of me is actually a significant improvement from me at my worst state in the progression of my disease. I graduated high school in 2012 around 175 pounds. By August 2013, my weight spiraled below 125 lbs. It is from my final days of high school that things started to change for me. That is where I will begin my story in-depth.
Beginning of My Journey
Only in hindsight do I know that early signs of something wrong started to manifest. I had mildly swollen hands, dark blotches underneath my nail-bed which looked like bruising/internal bleeding, and occasionally my arms and fingers would tingle as if there was pressure on a nerve and they were asleep. Though I worked twenty hours a week in addition to attending High school, I experienced more fatigue than usual. I noticed these anomalies around May 2012 and didn’t think much of them.
It wasn’t until July of 2012 that I developed Raynaud’s Syndrome and knew that something was amiss. Raynaud’s is a condition where the extremities are hyper reactive to drops in temperature causing fingers and toes to turn blue or white due to lack of blood flow. Working at the Coldstone Creamery ice cream parlor, I was quick to realize that I could no longer walk into the freezer or handle cold pans without feeling frostbitten. At one point my fingers felt rock hard. Lightly tapping some of the tips on the table sounded like tapping nails instead of fingers. My fingers became dark and skin began to peel. I was so reactive that a cool breeze on a hot summer day was enough to trigger an episodic attack. I developed digital ulcers which are highly sensitive to the touch. Hitting an ulcer on the fingertip is probably fifty times the pain of stubbing a toe. This pain occurred frequently because something as simple as reaching for my phone in my pocket too quickly would result in accidental contact.
So What Did I Do?
Have you ever googled symptoms and have a mini panic attack because WebMD will show you the worst possible scenario as possible causes for your symptoms? Usually it’s nothing serious… But that wasn’t the case when I discovered my early symptoms aligned with a disease called Scleroderma. With further research, I read something that made my heart drop. “There is treatment but there is no cure”. Immediately I’m in denial. Maybe I just have primary Raynaud’s and no underlying disease? At this point, summer of 2012, I have no other significant symptoms and the rheumatologist I saw twice didn’t help much. He suggested I “move somewhere warm.” My blood tests were not definitive. I had a positive Anti nuclear antibody (ANA) test which is usually present in patients with any auto-immune disorder but disease specific tests for lupus and scleroderma came out negative.
So off I go to Chicago to pursue a bachelors in Audio Design & Production and a minor in management. Life was more than good. I had a clear cut plan and in my head. Nothing but myself would thwart the execution of my plan. I came in with college credits from IB, AP, and NYU Tisch School of the Arts. Couple that with CLEP tests I planned to take and I would have graduated with a major and minor in 5 semesters. The fall semester of 2014 would have been my last semester. I would have been free by 2015 before the age of 21. Then I would have embarked on entrepreneurial projects before eventually pursuing an MBA. My aspirations were placed on hold as my priority shifted towards my health.
It was bad enough suffering Raynauds in the Chicago cold, but one by one, unexplained symptoms crept up on me. With many of the new symptoms, I tried to write them off due to more common reasons. A little dry skin here, dry hair there: must be because winter is coming right? I’m fatigued and lethargic, but maybe I just have a problem with laziness or lack of motivation? My forearm skin is tight but I life weights so surely it must be thick muscle right? I have a little bit of shortness of breath walking up the Chicago subway steps so perhaps not playing a sport for over a year has me out shape?
The mirror tells me I’ve lost some muscle and my roommates confirm it. This is where I take initiative. I resume routine gym activities and I begin eating more food to catch up on my bodybuilding. All is well at first. Lost muscle mass is returning fairly quickly because of my previous muscle capacity, although I do notice that I can’t lift as much as I used to. My body feels tight and despite having tai-chi classes where we stretch extensively, I think to myself, “all I need to do is stretch more.” One day in the gym I realized I could not bend my arms back for a tricep extension— and this was with and without any weight!
Summary of Symptoms, Stress, and Sorrow
Now I know for a fact that something really serious is happening. I contact my mother and she finds a trusted rheumatologist who would be more attentive than the first one I saw. It’s March 2013 and I’ll soon be turning 19. I fly out to Maryland and it’s good to be back home, but I have a mission. Upon seeing the rheumatologist he tells me that he thinks I have scleroderma. He refers me to the renowned Dr. Wigley at John Hopkins, and one of his direct subordinates ended up being my doctor there. Almost a year after giving myself a correct self-diagnosis, I am finally clinically diagnosed with Diffuse Systemic Scleroderma on June 06, 2013.
Unfortunately, this a reoccurring issue with auto-immune patients. A diagnosis is necessary for treatment and patients often do not get diagnosed until symptoms are at their ugliest state. This is an unfortunate reality because the earlier that treatment starts, the better the prognosis for people with conditions similar to me.
The disease affects several major systems of the body and has the potential to be fatal. By the time I’m at Hopkins, my symptoms cover a broad spectrum of significant problems. Here is a list of some of the significant symptoms I experience(d):
- Reduced range of motion and flexibility (arms can’t be raised, can’t bend down)
- Reduced strength (From doing regular reps with 35lb bicep curls to max being about 10lbs)
- Sudden decrease in weight (unintended 35-45lbs drop over a few months)
- Sexual Dysfunction (Inability to perform even with medication)
- Fatigue (Chronic tiredness regardless of how much sleep I got)
Those are five major significant changes which affected my well-being. The severity of some of these made me feel like an old man when I was supposed to be hitting my youthful prime. If I had to live alone, I’d be 19 years old with life alert.
The thing about a disease like this is that most people won’t know I’m going through anything unless I tell them. People loved how I walked with “swag” not knowing that the sharp pain in my hips affected my gait. To add insult to my injuries, when these symptoms were at their worst, I was in a long term relationship of two years at the time where things were already rocky for more reason than one, and these health issues became icing on the cake in that aspect of my life. To put these symptoms into perspective for you I will explain some of my shortcomings.
At my worst, if I dropped something on the ground, I could not pick it up. I could not put my own socks on. Nor could I shampoo my own head. Getting out of a chair was a daily struggle. My legs and arms felt heavy. When walking up the stairs I had to place both feet on one step before advancing to the next. By the time I got up the stairs, I was worn out. I was scrawny, my lips darkened, my fingers looked eaten away. My issues ate away at my confidence. I noticed a difference in how people looked at me. To top everything off, one of my worst unimaginable fears afflicted me, I lost my mojo and my physical capability to perform. All of these symptoms threatened my masculinity and left me feeling less than human.
I was always somewhat of a biology nerd, but I began researching so much everyday that I was consumed in trying to find solutions besides the treatment and medication regimen I was on. My disease is rare and I’m a patient, but I’m also a research subject. Doctors and students ask me questions and learn from me. Taking things a step further, I put my own research skills to use. I’d follow it up by finding obscure supplements and natural remedies. I changed my diet and went through trial and error despite any risks because I felt that I didn’t have much else to lose.
Forward For the Future
Throughout it all, I am always grateful that my disease never significantly damaged any of my internal organs as of yet (March 2017). Scleroderma patients are at risk of acute renal crisis and other potentially fatal complications such as fibrosis (scarring/hardening) of the lungs, heart or digestive system.
Returning to Chicago for Fall 2013 was not a viable option. I tried to persevere and go to community college but I did poorly and withdrew for a year. During this extra free time, I focused on my recuperation and found solace in devoting time to pursuing my aspirations to be an audio engineer and an established music producer.
Life deeply humbled me. From the top of the food chain, I fell to the bottom. I was superman intoxicated by kryptonite. Because I looked fine, people wondered why I carried a cane. I used to fall: down the stairs, on city streets, in the house… you name it. Lord knows I couldn’t get up by myself but strangers and family alike were always there.
If playing football didn’t naturally teach me how to fall, bracing for impact properly, I would have probably broken or fractured something. The worst thing about falling is it would happen in slow motion and I would KNOW without a doubt that face first into the ground was my fate. Kicking into something such as uneven pavement and slightly tripping is something the average person doesn’t recognize happens every other day. I had no leg strength to balance myself and the end result was always falling. Balance should be automatic in that instance.
Here are some bloody images showing you what i had to deal with on a regular basis basically up until the beginning of 2014.
My disease is just that in my life, one great fall and I have no choice but to get up. Just like my falls, I had the support of many family, friends and even strangers, helping me get back on my feet. At 20, I had hoped that I would be the one taking care of my mother, but it turns out once again, she was and still is the number one person supporting me and helping me, help myself. I cannot tell My Story without mentioning her. In fact she is my inspiration; it was her who told me that with all the things I have to say, I should start a blog.
Rome was not built in a day but a couple bombs could destroy it in less than a few hours. In my state of health, rebuilding requires time and I needed to fall back and reevaluate a great deal of things in life. My experience with my ordeals thus far, has taught me many things and given me perspective I never imagined I would have. Scleroderma shifted my scope, pushed my perspective, and moved my mind.
To all who have read this entire page and reached this point, I thank you for taking time to read my story. This is me opening up to the public. My story is ongoing and as I continue with my treatment, I’m starting to remember what normal feels like but I am still not quite there yet. Regardless, I am always grateful that I am still me and that I am still making positive progress to this day.