I Accept My Disease, but I Intend to Keep Fighting It
“You really should get that bump checked out.”
It was September 2014, just after Labor Day, and a friend was pointing out the obvious. The bump, which I thought was just a rash, seemed to have no intention of going away. I didn’t think much of it at first, but after a few weeks of applying over-the-counter cream to no avail, I knew it was time to see a doctor.
I was lucky in many ways; 2014 came at the tail end of a traumatic few years, but I found a dermatologist near my home who was able to schedule me for an immediate appointment.
After determining what it wasn’t, the dermatologist sent me out for chest X-rays. I couldn’t understand how a bump on the nose turned into a scan of my chest, but that doctor had a suspicion that ultimately was correct — one that dramatically changed my life.
It was almost exactly how the Mayo Clinic describes it: “Many people with sarcoidosis have no symptoms, so the disease may be discovered only when a chest X-ray is done for another reason.” In my case, the bump was the reason, and the X-ray confirmed it. I had sarcoidosis, with the damaged lungs to prove it.
From there, my story resembles that of many others. The last seven years have seen me go to more than 20 doctors for dozens of medical appointments and scans, and take countless pills. (After I realized I take more than 100 pills monthly, I decided to stop counting.)
I do all of this just to have a chance at a “normal” life.
The hard part, hard fought
One of the most important things I have needed to do is simply accept that I have sarcoidosis.
For many of us, this is hard to do. After all, the medical texts tell us that many people go into remission within the first few years. That hasn’t been my story, and I have found it helpful, if not crucial, to focus on my care in a thoughtful and intentional way. I hope that one day my sarcoidosis will go into remission, but I plan to prepare for it to be a part of the rest of my life. I accept this to be my most likely reality.
But I can continue to fight for a different outcome. I can accept that I’m likely to have sarcoidosis for the rest of my life, but I’m equally determined to fight it for the rest of my life, too.
How do I fight? Well, to be honest, the fight changes from day to day. Sometimes, the fight is just getting up on those days when that odd, dull pain decides to visit. Other days, the fight requires me to push my body beyond what doctors say I should be able to do — like going on a long run.
Most often, the fight is simply deciding to move forward with grace and acceptance.
It is easy to be mentally and physically drained by this disease. Sarcoidosis is unrelenting and unforgiving. Unlike me, sarcoidosis never seems to get tired. Sometimes I wake up and it takes a few minutes to truly know how I feel. Or rather, how sarcoidosis is going to let me feel. So, I’ve learned that if I’m not ready to fight every day in some way, then sarcoidosis will win the day.
For my fellow sarcoidosis fighters, whether you call yourself a “survivor,” a “warrior,” a “snowflake,” a “fighter,” or any other term, I see you and I salute you. And since we also need to be our own cheerleaders, for my seven-year anniversary, I also want to salute myself. It has taken a while for me to get here and to learn how to move forward, but I feel like I’m blessed beyond measure.
Here’s to another year of accepting — but keeping up the fight, too.
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Note: Sarcoidosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.
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Comments
DebbraP
Congrats, Calvin! You are proof that a life with Sarcoidosis is a life worth living. You are 7 years deep into this and still learning. To me, that means something has given you the hope and strength to not give up. And this (your story) helps ME. I was diagnosed 2 years ago but think I was having symptoms much longer than that. I'm not giving up either because I'm still learning. Nowhere have I read that we're die upon diagnosis so I am going to keep going. After my husband passed away I didn't think I wanted to live, especially since I am fighting Sarcoidosis. But the truth is, I accepted the Sarcoidosis before my husband passed and I want to be able to enjoy life again. For me, the hard part is not the living with oxygen tubing up my nose but the daily fatigue. I can accept having to do things slower and differently but feeling like roadkill is the worst. I'd rather have a bad case of the flu 100 times than to live with this fatigue. And I take Folic Acid. I eat my veggies. I try to be mobile. But I don't think any amount of exercise or even sleep can cure fatigue. Altho I have discovered that keeping hydrated and drinking lots of water helps. But it's not enough.
People don't understand our Sarcoidosis. That's another battle we fight. They don't understand that my accepting that I have Sarcoidosis actually helps me to move forward and that it is THEM who get in my way. They need to accept it too and they don't. They don't because they choose not to educate themselves on it and choose to dismiss anything I tell them. So now I am working on going forward (without some of these human obstacles in my way) and just focus on what I need to do so I can enjoy life again. If they want to come along this road with me fine. If not, too bad, too sad. Not my problem. I have to move forward. Don't know if I will ever go into remission but even if I don't I have to keep going. There are things I want to do that I know I can but will take a little time and some resources. Living is still doable for us. In fact, sounds like you do more in life than some of those who don't even have Sarcoidosis. Guess they have yet to learn...
Julie Rossiter
Kia Ora, Very inspirational as I have just had my third year anniversary but been unknowingly fighting for many years prior. Thanks for sharing your story, it has helped me. Stay strong.
Gerry Cote
I am in the process of being checked for pulmonery hypertension, was diagnosed with sarcoid at 32 now 73, Not sure if their confusing the two problems. It is getting harder to walk I would just like to know which is causing the fatigue or maybe both.
Gwen Brown
I’ve been fighting this disease for 25 yrs. I’ve lost my sense of smell and my taste is off at times. I have pollips in my nose, can’t blow my nose at all. Every two months my ENT Dr.has to clean out the sinuses, I suffer with nose bleeds periodically as well. It’s bad and I’ve been told by my pulmonary dr. No funding is available in the United States. Which I go to enough workshops to know of this. Sarcoidosis Family we gotta fight and keep on moving.
Jennine Browne
It’s been almost 17 years since I was first diagnosed and what a ride it has been.
I still managed to fall pregnant with my second child after a lot of difficulty, I’ve had pneumonia, a collapsed lung and can now add osteoporosis to my list of ailments (caused by all the prednisone).
It does get hard sometimes but I try to keep myself lean and active so that I can breathe better. My boys are still in school so I want to be around for many years to come.
I’m lucky that I did all my adventure travel in my life before kids as there’s no way I could go trekking in Nepal or white water rafting at Victoria Falls now. Other, more sedate adventures await.
Never give up! Never surrender!