My Sarcoidosis Journey – From the Persian Gulf to New Jersey
Thursday, June 26, 2014 • 11:16pm
In January 2009 I heard the words we all dread hearing from a doctor; “The preliminary analysis of your scans indicates you have lymphoma.” It was a very troubling moment in what had been, at that point, an extremely difficult six weeks where I came to feel sicker than I ever imagined possible. The pain throughout my body extended to the core of my bones. It was intense and unrelenting. Much of my body swelled up like a balloon and I had lesions on my legs that looked like gaping, open, wounds. I could barely walk but that didn’t matter much because I didn’t really have enough energy to stand up. Actual sleep was rare and lying in bed at night was highlighted by high fevers and night sweats that left me completely soaked. After a few days of fearing I had cancer, I was told I instead had a rare auto-immune disease called Sarcoidosis.
Sarcoidosis is one of those invisible diseases. Unless you are able to see the swelling or lesions on a victim’s skin, that are not always present, those afflicted will appear, outwardly, relatively healthy. Extended hospital stays are rare and most learn to live with it during the day but its effects are brutal and unrelenting. For veterans it is, along with many other conditions and diseases, one of those invisible illnesses families, friends and employers need to be aware of.
Although there is still much to learn about the disease, doctors have told me those afflicted most likely had a genetic predisposition, were exposed to some sort of toxin that was the actual cause and then, perhaps years later, exposed to another toxin that triggered the disease itself. In my case, I was told, it is likely toxins I was exposed to in the Persian Gulf in 1991 were the cause. In hindsight, I do remember, as a Navy pilot, after flying low level missions in my helicopter and landing back aboard my ship, occasionally experiencing the same breathing difficulties that preceded the onset of the disease seventeen years later and characterized it for the following five years.
The intensity of my initial symptoms in 2009 abated, to some degree, after a few months allowing me to resume normal daily activities, but the on-going effects of this disease remained with me for almost five more years until I started feeling 100% healthy again during the fall of 2013. Those years in between were, however, extremely difficult. Everyday presented new challenges characterized by a complete lack of energy, unrelenting intense pain in my joints and bones, and random swelling throughout my body. Adding to this, the various medications I was prescribed caused me to put on a significant amount of weight and also turned me into someone I just didn’t want to be. Even worse, I didn’t want to discuss it with anyone because I didn’t want to be seen as a “sick” person.
With a disease like Sarcoidosis you just learn to live with it resigning yourself to the fact you may never feel good again. Frequent visits to the doctor were normal along with lab work consisting of providing 5-9 tubes of blood and/or various types of imaging of your heart, lungs and joints preceding many visits. The ups and downs were constant but the ups were always clouded by knowing the downs were just around the corner. All of this puts tremendous pressure on your personal life and your family. Not having the energy to be who you are and not wanting to appear sick had near devastating consequences. Professionally, my employer during this time, a Wall Street firm, was not empathetic. I assume this was because my management, who was aware of my condition, was just ignorant about the effects of the disease. Even the firm’s wellness group didn’t seem to understand it. Neither wanted to hear about it being tied to military service. I can only assume this was because it’s an invisible condition. But, regardless, their ambivalence did make me feel like the departmental leper much of the time.
Fortunately, after five years and several set-backs, it appears my Sarcoidosis has gone into full remission. I haven’t felt this good in a long, long time. In fact, in learning to live with this disease, you never realize how bad you actually felt until you start feeling good again. Now the only pain and soreness I have to contend with is from working my body back into shape after years of fighting this disease.
I offer this story not looking for sympathy (remember I’m better now) but to bring attention to the challenges faced by many veterans in their personal and professional lives due to conditions they contracted as a result of service to their county. It is my hope they will be encouraged to speak up and let their families know the details of their conditions. Even more importantly, I hope the families, friends and employers of our veterans will seek to understand these conditions so they can be better care-givers, friends and managers.
I would be happy to discuss my experiences with anyone interested in hearing more. Feel free to reach out to me at firstname.lastname@example.org.