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Started by: Mark Krzyzewski
5 1/2 years ago my wife, an amazing teen counselor, mother and wife succumbed to a rare autoimmune disease. The disease is called temporal arteritis. We believe that exposure to black mold in her counseling office triggered her disease. My wife's disease is rare enough that it only happens to elderly women in their 80s and is a condition whereas her immune system fights the arteries in her body. This causes her to lose her vision, severe headaches, neurological issues such as painful neuropathy, difficulty with balance, concentration and cognitive issues. My once vibrant, bright, intelligent wife has difficulty finding the right words to say in simple sentences. She is unable to work, doing the work she once dearly loved because she can't concentrate. As the disease progresses, it becomes polymyalgia rheumatica (PMR), a debilitating muscle and joint inflammatory disease. PMR makes it difficult for her to be mobile at work (she worked in a crisis inpatient hospital setting), she needs a wheelchair if she has to walk for more than 10 minutes and can only sit for 15 minutes at a time. Finally, she is losing her vision, Perifoveal Telangstasia, making it difficult for her to read and now drive in the dark. But still she manages to be present with me and our children when it would be just as easy to withdraw. Despite moments of discouragement, she keeps a positive attitude. I don't know how she does it some days, especially after discouraging Dr. visits. Lana has been unable to work since she was diagnosed and more than anything, it frustrates her that she can't help teens suffering with co occurring mental health and substance abuse issues. It was/is her calling and she was amazing at it! She is constantly stressed about her doctor's visits and the added financial stress on her family. "If only I could go back to work or if I wasn't sick." She knows she has to fight the good fight, get better, stop taking the daily prednisone and go into remission before she can get back to bigger things but she blames herself, stresses herself out and triggers relapses. I thought long and hard about asking for outside help and putting our story out there but this last surgery has left us financially strapped. I can see, feel and hear her worry and the last thing she needs is another relapse. A relapse for her can lead to 100 mg of prednisone for days, stroke or heart attack. So this is us surrendering to the universe, surrendering financially and hoping that others will lend heart, hand and monetary donations to help us pay outstanding medical debts. Thank you for allowing me to share our story.
Posted by Mark
February 11 at 9:32am
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February 8 at 8:00pm
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February 6 at 5:44pm
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February 5 at 8:39pm
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Lana Inman — 8 years ago
Today, I was able to apply the first $500 in contributions to my hospital bill. Thank you to our friends and family for helping us put a dent in the 20k bill for tonsillectomy, uvuloplasty, adenoidectomy, rhino/septoplasty and turbinate removal...all allowing me to breathe again. It has been a slow recovery but everyday I notice small improvements. Inflammation is the crux of my disease and that inflammation was slowly causing my throat and sinuses to cease functioning on par thus the reason for the unexpected surgery. Thank you again for your contributions, feeling blessed. Please continue to share my story. March is National Autoimmune Disease Awareness month. More than anything I believe it is important for everyone to be aware, of the silence, of those who struggle with autoimmune diseases. If my story helps another person, understand they are not alone in their fight, that is enough for me.
Lana Inman — 8 years ago
An individual with an autoimmune illness follows strict orders from countless doctors because the consequences can, in my case, be life threatening. In March of last year, I didn't follow those orders, and had an ischemic stroke. For those of you that know me, no I was not being rebellious, it happened during sleep and I was unaware until the morning when I woke with left sided weakness. Many neurologic visits later, it was determined that I indeed had a stroke. On Valentine's eve the ER staff went into full blown cardiac emergency mode because of left sided weakness & increased pain, slurred speech, confusion and numbness in my left arm. There is a correlation, between diabetes and the presentation of cardiac arrest, and I fit the description. A subsequent stroke was ruled out. A heart attack was ruled out after an overnight stay and many tests. An arrhythmia was discovered, however this is a long term side effect of prednisone use. And so the journey continues.
Lana Inman — 8 years ago
Valentine's day was a perfect example of what an individual with an autoimmune illness endures. A normal day is not "normal" and plans are difficult to make or follow through on because in minutes your situation changes, your health betrays you and you are off to the hospital for another ER visit. (to my brother and family who read this, I am okay, it was more than routine but I am okay). On Valentines eve, my blood sugar was high. This is routine for me. I take prednisone daily, to keep the inflammation of my arteries in check. Prednisone is a cure and a curse. It takes your blood sugar (bs) on a roller coaster ride. From the minute you take it in the morning, the ascension begins (hi bs levels) and by the evening (lo bs levels). Valentines eve it was higher than normal, so off to the ER and an overnight stay for observation.
Lana Inman — 8 years ago
Jen and Rob, thank you so much for your contribution. Your loving, generous souls have always been there for me in times of strength and weakness. My love for you is enormous. Humble thanks.