For the 15 years that I’ve been living with pulmonary sarcoidosis, I’ve learned that every day is not just a new adventure, but a blessing, too. Shortly after my diagnosis, I discovered how sarcoidosis can affect the body.
The first — and probably the most difficult — challenge I had to deal with was describing the condition to others. When you explain that it’s an autoimmune disease, eyebrows rise, making you aware that the person you’re talking to may feel uncomfortable about the subject. However, my revelation to family and friends about the condition was different.
I’ve always prided myself on having attractive, muscular legs. My calves were beautiful, if I do say so! Before I received a formal diagnosis, I noticed that I was developing reddish, itchy bumps on my legs. Because of the marks that the rashes left on my skin, I was often asked, “Where’d they’d come from?” I don’t want to freak people out, so I usually tell them it’s a skin disorder and leave it at that.
Of course, this makes life more difficult during the summer months. I managed to find a fairly good cover-up to apply on my legs so I can wear shorts. While it’s not perfect, it looks much better. The other summer obstacle is breathing on humid days — oh, so much fun!
The many hats we wear
No one fully understands the many hats we wear as sarcoidosis survivors. Some of our hats include therapist, advocate, pulmonologist, life coach, and best friend. Having worked closely with my pulmonologist and respiratory therapists over the past two years, I’ve learned a lot about the condition, my body, and my physical capabilities. I’ve also known how to change my “hats” quickly.
As a person living with a disability, I’m usually home alone during the day, except for doctor’s appointments or my gym time. My dog has become more of a therapy dog for me than the lovable little mutt we rescued from the shelter. Brownie can tell when I’m not feeling like myself; he knows when I’m feeling uncomfortable or anxious. He follows me around the house and sits close by or on my feet. I realized recently that when I’m feeling anxious, I move from chair to chair while watching television or reading. At these times I wear my “therapist hat” to calm myself.
The post-traumatic stress disorder associated with sarcoidosis causes a loss of focus, particularly on our health. When I feel I’m losing attention, I change from my “therapist hat” to my “advocate hat.” I understand that random emotions of discomfort may surface. Being my own advocate reminds me that I’m fighting for my well-being. At certain times in our lives, we have to be the dominant presence in our rehabilitation.
I am my life coach
Anxiety affects my mood sometimes. When it does, I avoid places and people because I feel emotionally safer in a familiar environment. I guess I’ve become accustomed to being by myself and around particular friends and family. However, I realize that I’m not doing myself any favors in my recuperative process by avoiding these situations.
So, I wear the “life coach” hat, reminding everyone that I’m still enjoying my life. If I can’t be honest with myself, then how can I live an authentic life? My truth starts with me, and I understand that for my healing to continue, I’ve got to face certain truths — about my condition and myself. I have to live with sarcoidosis; it’s where I am now. To progress, I have to make adjustments, not allowances.
My normal starts with being thankful for each new day and acknowledging that each one is an adventure. I’ve become more cautious about the places I go and the company I keep. I know that some people are not good for my well-being; they compromise my peace of mind with their nonsense. I wake up with a few aches. At my age, I blame it on my sleep pattern.
I express gratitude for each day, as nothing is certain, regardless of what we face in life. But I know that for now, sarcoidosis limits only some of the things I do, and I’ve made adjustments. The condition doesn’t stop the feelings of thankfulness I feel each day. If anything, it makes me fight harder to continue to live with gratitude. Sarcoidosis has changed some of my life, but it hasn’t changed the way I live it.
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 Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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