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I have to just say this, while it’s fresh on my mind, right now, this moment…I have to admit that living with a disease like sarcoidosis is hard. What makes it hard isn’t the physical pain, although it’s unpleasant, but the fear of what this disease is going to do next. Not every day is hard, not every moment is scary, but just generally, it’s difficult and sometimes overwhelmingly so. Often, I can shove it into the recesses of my mind, to will it out of the way, so that I can live as normal a life as possible. I’ve learned to cope in ways I usually take for granted, like budgeting my time and energy where I need it most and like tuning out constant annoyingly unpredictable levels of pain. I have learned to forget what was once normal, what healthy was. I’ve adjusted to a new way of living. I won’t call it a “new normal.” I hate that expression. There is nothing normal about life with a disease like sarcoidosis. There is nothing normal about gulping for air or arguing with yourself to accomplish simple tasks like folding laundry or grocery shopping.

Despite my built in denial system, there are times in my life when this disease smacks me in the face and reminds me that it’s real, it’s part of me and it’s not going anywhere. Times when I get sick or injured and it takes me eight million times longer to heal than someone who doesn’t have a disease like sarcoidosis is one example. Another, is when I fall down from dizziness because my pulse oxygen level drops into the “danger zone.” I find myself reminded that this disease is a stubborn shadow lurking in my life when my husband looks at me with pitiful eyes after I’ve been coughing and wheezing for several minutes or when I am too weak to stand or climb stairs on my own.

As hard as I try to keep the fear of what this disease can and probably is doing to my body at bay, as hard as I work to combat this disease and the side effects of all the stupid medication I take to manage the symptoms of it, the fear patiently loiters, like a peeping tom it watches me and waits and, even though I can often quiet the fear, push it into the depths of my core, it never really goes away. The fear remains with me always, like the hum of a fluorescent light bulb. My fear is really just one more symptom of this disease, one more thing I have had to learn to manage.

Once and awhile though, something happens to kick that fear into high gear and it doesn’t even have to be something that happens to me. It can be something that happens to someone else in my small community of friends and fellow soldiers who wage their own private hellish war against this mean monster of a disease. I am experiencing one of those “once and while” moments now. I found out just a few days ago that a friend of mine with this lousy disease had a double lung transplant. This news is both exciting and terrifying. I am thrilled her moment has finally come to try to get a second chance at a better life, of course. And, this is something she must do if she wants a fighting chance at being around for any length of time for her family and loved ones.

I find myself feeling both hopeful and enormously anxious, terrified really. This is major surgery and that’s always scary but, couple it with a chance of organ rejection and it’s spine tingling. At the same time, if all goes well, she will be free of supplemental oxygen. She will be able to breath on her own and she will reap the rewards of what could truly be a more normal life. Whatever happens next, the journey will be long and the healing slow. I will hope for the very best for her because she deserves it. She is an inspiration to a lot of us with this disease and her legacy always will be.

My feelings about her journey are also selfishly personal. Whenever I hear a story like this, it is an acute reminder of the reality of how dangerous this disease is. No matter how I run from it, sarcoidosis is always one beat away for catching up with me. Stories like this remind me that sometimes, sarcoidosis could not only catch up to me but it could overtake me and leave me with limited options. There are times sarcoidosis has already left me blooded and bruised, beat up and worn out. There are times sarcoidosis has already forced me to make very difficult health and lifestyle decisions. Sometimes sarcoidosis refuses to live in the background and when this happens…sarcoidosis is as real as it gets.

The fact of the matter is that this disease is always as real as it gets, even while I attempt to squash it down, to accept the humiliation it forces upon me with some modicum of dignity and, even as I make necessary lifestyle changes to accommodate it, sarcoidosis never takes a break from its desire to reek havoc on body or in my life. It never stops it’s quest to send me into madness. Sarcoidosis seeks to do me harm and regardless of my best efforts to ignore it, sarcoidosis isn’t going anywhere. Sarcoidosis is a reality and it is woven into the fabric of the story of my life…and it always will be.

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