Man do we need more than a month, but I guess I’ll take what I can get. Like last year, I am going to focus my attention on all things sarcoidosis for the entire month of April for my blog. Consider yourself warned. Doing this helps me not only feel like am doing a little something to raise awareness, but it also takes me back to the original purpose of my blog which is to share my journey.
In the spirit of sharing my journey, I’d like to start by talking about my symptoms but before I do that, I want to explain a little something about this disease. It’s nicknamed a snowflake disease because no two people who have it, experience it or respond to treatment in exactly the same way. It’s one of the many mysteries of this illness.
If you’re unclear on what this disease is, let me put it simply…Sarcoidosis is the growth of tiny collections of inflammatory cells (granulomas) in different parts of your body. Organ damage occurs when these collections of cells begin to interfere with proper organ function. It’s classified mostly as an auto immune disease but even some will argue that it is actually an inflammatory disease and there is no known cause or cure.
Folks with this disease run the gamut from being entirely asymptomatic to dying. Some go into remission while others chronically suffer. I use the term “remission” loosely though, as this disease is so convoluted that even the medical community is in dispute about that word (more on that in an upcoming post). Anyway my point is, that this is a complicated disease that needs much more in depth research so it can at least be better managed. Due to a lack of financial incentive, research for rare diseases is usually quite limited. Despite the fact that the first documented case was back in 1869, treatment for this disease is for symptom management only and the treatments are sometimes harder on the body than the actual disease.
I was formally diagnosed back in 2012 after an open lung surgery (more on that in an upcoming post) but I had symptoms of this disease for a long time and they went unnoticed by the medical community and justified away by me. My fatigue, swollen lymph nodes and achy body were easy to justify. I had a very stressful career and worked a lot of hours. My cough was allergies, right? I gradually felt lousy over the years so subtly that it just became my “normal”. I had a physical in 2005 where my C-reaction protein was high and my doctor noted it but never addressed it. C-reactive protein is produced by the liver and when high levels of it are found in blood, it means there is inflammation throughout the body. Inflammation is the single most significant symptom of sarcoidosis.
Then one day many years later in 2011, I found a dark purple spot on the inside of my thigh about the size of a quarter. At that time, my husband had just undergone treatment for skin cancer so I was concerned and had it biopsied. It came back as “probable sarcoidosis.” But let me tell you want happened next…nothing. My dermatologist declined to take the biopsy seriously and told me that I was “young and healthy” and shouldn’t worry about it.
My curious mind got the better of me, so I went home and looked up sarcoidosis on the internet and was amazed to read that I was having every symptom listed…coughing, chest tightness, skin lesions, swollen lymph nodes, shortness of breath and more…all things I justified as something else. Alarmed, I called my primary doctor. Were it not for his quick action in ensuring I received a chest x-ray and pulmonary function testing, who knows where I would be now.
The thing about this disease though, is that it is sneaky. Despite my skin biopsy and despite my primary doctor’s appropriate action, it was another YEAR of poking and prodding and surgery and testing with diagnoses of everything from lupus to MS to cancer being discussed. Unfortunately, this is one part of my journey that is very similar to many others who suffer with this disease. It is hard to diagnosis, easily misdiagnosed and often completely misunderstood by medical professionals.
Flash forward four years and here I am sitting on my couch on the first of April in 2016 writing a blog about sarcoidosis in hopes that if just one person finds what I have to helpful then I have done a good thing and that those who knew nothing about my experience will gain better insight into my journey and that everyone realizes that there is still much to learn. My story is a great example of that because my dermatologist failed in her due diligence to care for me. She did not take this disease seriously and had I not taken matters into my own hands, the doctor who is now my pulmonologist says that I would be very sick indeed by now. I credit her with saving my life.
If you’re wondering, I am among those who fall into the chronic category. I am deeply effected by this disease. My lungs are forever scarred. The quality of my life has been significantly impacted. I tire with unpredictable ease. I sometimes gag and wheeze and gasp for air. I am short of breath all of the time. My bones and joints ache. I suffer neuropathic pain because the inflammation has damaged my nerves. I fight to be strong yet I am always physically weaker than I want to be or should be, given how hard I work to maintain a healthy lifestyle. I can’t often do what I want to do because my body gives out. My brain, once a thing of pride, is now much more sluggish. I forget things.
Now, I don’t tell you all of this in hopes you will feel sorry for me. Your pity is the last thing I want. I accept my disease for what it is and while it is part of me, it is not all of me. It does not define me but I think it is important to shine a light on it. I think those of us with rare diseases bear a responsibility for educating those who would otherwise be ignorant to the experience of life with a rare disease.
I hope you’ll hang out with me through the month of April and learn more about sarcoidosis and my journey. If you do…then I’ve done my part to help raise awareness.