My name is Brenda Joyce and I was diagnosed with Sarcoidosis February 2011 at the age of 41. I developed a couple of blistery bumps and small rashes in my face around November 2010, which I have now learned are called erythema nodosum, and plagues. My upper cheeks on both sides, and nose started to lighting (Hypo-pigmentation) in a butter fly pattern, in addition, I developed lupus pernio, which is a skin condition that causes hard, reddish-purplish bumps, on my right cheek, upper lips, around the rim of my nose. These new symptoms sent me running to the dermatologist. The dermatologist performed two skin biopsies, which never conclusively came back as sarcoid, and a chest x-ray, which showed swollen lymph glands; I was clinically diagnosed with sarcoidosis. Truthfully, I did not have any symptoms outside of the skin, until the doctors said you have “Sarcoidosis”, and I swear, when the doctors said sarcoidosis, I developed every classic symptom of sarcoidosis, which are night sweats, extreme fatigue, shortness of breath, heart palpitations, painful joints and muscles, and the overall feeling of being sick.
Fast forwarding today, most of my symptoms has subsided and I am considered some-what in remission. I feel great, and I have returned to living a normal life, giving all praises to God. Statistically, people who develop skin sarcoidosis, specifically lupus pernio, usually experience chronic debilitating sarcoidosis. I am so grateful that I am not sick as my fellow “sarkies”, and that grace has reign upon me so generously. Some doctors say it’s just an annoying disease which goes into remission within 6 months to a couple of years, which is true for some; but for others it is a chronic deadly disease, which robs them of daily living and life. When I get anxious, worrying about whether this disease will progress, or cringe when I hear that someone has passed, I like to mediate on these uplifting expressions:
“The past is already gone, the future is not yet here.
There's only one moment for you to live,
and that is the present moment” ―
It is idle to dread what you cannot avoid.
Publius Syrus
Publius Syrus
We are still masters of our fate.
We are still captains of our souls.
Winston Churchill
We are still captains of our souls.
Winston Churchill
Brenda,
ReplyDeleteI'm glad that you are sharing your story. Too many times we are faced with illnesses or opposition and think that we are the only ones going through. I look forward to reading your blog.
Thanks Tracy, I really appreciate your encouragement.
DeleteI have sarc and was diagnosed in May 2009...three years ago, through a liver biopsy. I have systemic sarc, meaning multi-organ, and it has invaded my lungs, liver, lymph nodes, spleen, bone marrow, heart, skin, eyes, joints, and peripheral nerves.
ReplyDeleteI had an implantable Implantable cardioverter-defibrillator, and ICD, put in on 8/31/2009 and was within hours of death because I had granulomas on the conduction nerves in my heart. By the time I went into the hospital, I was in full a/v block, meaning the signal to beat the ventricles, the lower half of the heart, wasn't getting through. I was having severe shortness of breath and chest pain and tightness.
I am now fully disabled because of this disease. I'm in constant pain in my joints and muscles. I have tremors in my hands and feet; horrible foot pain and memory loss and confusion.
I'm lucky to have a few days per month when I feel somewhat normal, so I overdo it, and am back in bed for the next few days recovering from doing basic stuff that I used to do all the time. I get winded just walking around house and have started using the electric scooters in the stores to get around.
My symptoms are still worsening even though I'm on meds. It is what it is. I'm lucky to have a supportive wife and sons that take care of me, but I hate it that I can't take care of them like I used to.
Until I was diagnosed three years ago, I had never heard of this disease. How things have changed...
I was diagnosed with Sarcoid in February 2010 after thinking I was crazy for 5 years. And having been told for the last 20 years that I had COPD, it was really this beast! I think I have been to every specialist for every body part we have. It has been a roller coaster ride for sure. First maybe MS, Lupis, Fibro, or without saying it thinking I was just crazy!
ReplyDeleteI had been having trouble with my eyes,losing vision that would not be explained, and was sent finally to a retina specialist. If it hadn't been for him,and pure luck!, I'd probably still think I was crazy. He felt the eyes were just a another symptom of what was happening in my body. After treating me for 3 months, with no luck, he had me admitted to the hospital. I had developed a sever cough that did not respond to treatment. It had become so bad for me I was unable to talk. He found a team consisting of a neurologist, pulmonologist, and cardio. After 3 days of testing, talking, and viles and viles of blood, they discovered sarcoid. I have never been so happy to be told something was wrong with me!
The Nero part for me is the most difficult to treat, because in this area, NY, most of the patients are pulmonary sarcoid and they haven't seen many neurosarc patients. I was lucky enough to get to the Cleveland Clinic and have a treatment plan. They were honest, no one knows how the disease develops, they know it can be devastating, and fatal. Some people have it go into remission, others are not so lucky. And they don't know why that is either. There is no real tried and true treatment, just trial and error. They have to find what works for you, the patient. So we know what lies ahead... day by day..enjoy the good ones when the come, because sometimes they are few and far between.
If we get the word out, maybe the can find us help!
NY Sarcie!
I like your post. I never knew much about Sarcoidosis until I heard that was what Bernie Mac died from. I'll pray you keep the strength you will need.
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