(This post was originally written in 2015.) I want to tell you about my sister. She's pretty amazing. She was also the motivation for my research paper this month. It was a paper on lupus. There's a lot to know, and while my paper was 15 pages including a page and a half of resources, it felt and was a scratch on the surface of what there is to know. Let me share with you some of my sister's story. My sister's life has been pretty rough. I could paint a picture of things that she's been through and had to shoulder that would bring a lot of people to their knees. She's survived tenaciously. She's been working towards healing for many years. She is always the warrior. Ten years ago, my sister had her first experience with Bell's Palsy a disorder that causes the face to droop in a similar manner to that of a person who's had a stroke. The condition is usually temporary, though no less traumatic. It returned a handful of times, sometimes switching to the opposite side of the face. Four and a half years ago, my sister was diagnosed with hepatitis C. If you're unfamiliar, Hep C is the most severe form of hepatitis. It can kill you, and if left untreated, it will. Options aren't many at that point. I'm sure there's an herbal protocol to support the body through this illness, but at the time I wouldn't have known what it was. I still would have to do some deep research to build a protocol plan that would work with and/or without the really harsh treatment that a patient goes through. Back to her story. Shortly before she was to begin the treatment regimen, she had to under go emergency gallbladder surgery. The treatment for hepatitis C is a regimen of prescription medications that is very similar to chemotherapy in that it breaks your body down to the point that the disease can no longer inhabit your body and goes into remission. Sometimes the remission is permanent, sometimes it's not. Sometimes the treatment fails completely, or kills you with the side effects it can cause. A person going through this treatment becomes weak physically, and so very, very ill for nearly the entire duration of the treatment which is 6 months. My sister almost died, literally. She had to be admitted into the hospital for an emergency blood transfusion because her hemaglobin and blood oxygen had dropped so low that she was going into cardiac arrest. Fortunately, she made it through the treatment. Not long after she was declared free of the hep C virus, my sister started getting sick again. At first, it was odd things, painful rashes and imflammation, random fevers and bouts of extreme exhaustion and weakness. It was really scary for her because it felt a lot like what she'd just gone through with hepatitis and the treatments. Many doctors were seen, very little was done. She was told that she was an enigma, no one could figure out what was happening to my sister and it was getting worse. They ran multiple tests, tests for MS were among them, ANA testing was done as well. They began to suggest testing for neurosarcoidosis, one of those tests involve extracting brain tissue samples. Thankfully, my sister did not have to end up going through that test. There was a point in which she was sent to Mayo Clinic in Rochester to a specialist because her eye sight began to rapidly degrade. The specialist walked in after the tests were done, told her that she was far sighted and that her prescription was wrong as a way of explaining the degradation of 20/20 vision to a need for a really strong pair of prescription glasses over the course of 12 weeks. Prior to that she hNo one had answers, no one wanted to admit they didn't have answers, so no one she sought help from gave her anything more than a cortisone shot and a shake of their head. They may have even assumed that based on her history with addiction that she was just an addict looking for a fix. Prescriptions were never her drugs of choice...and what was happening to her was very real. After a while, she quit seeking answers, and stayed away from the medical world's lack of answers...choosing instead a life of chronic crippling pain. Watching her was heartbreaking. It was frustrating. It was stressful. It caused her to slip into depression, and it made her feel like she was going insane. What was happening to her physically was effecting her in all aspects of her life. Not long ago, my sister caved in to the overwhelming pain, and let go of her pride. She went back to the hospital. One last desperate reach for a lifeline, and this time someone was there waiting to pull her out of the darkness. I don't know anything about the doctor who saw my sister that day other than that this doctor was a woman who wasn't afraid to listen, really listen. She was also not afraid to dig into my sister's medical history and look at more than the life of addiction that she hasn't been a part of for 9 years. This doctor looked at test results, looked at symptoms, looked at all of the things my sister had been experiencing since the hepatitis treatments. She asked my sister, “Have you been tested for lupus?” In fact, lupus isn't diagnosed through a single test. It's a series of symptoms that they look at, as well as an Antinuclear Antibody (ANA) test. The ANA test is used for diagnosing a variety diseases, MS is one of them. She had already taken the ANA test. They scheduled her to see a rheumatologist who looked at the combination of the ANA, the chronic symptoms, the sight loss, and the recent history of her medical challenges. It didn't take long for this physician to come to a diagnosis, and they began treating her for lupus. The road hasn't gotten easier for her. The symptoms haven't subsided. She has also been diagnosed with Rheumatoid Arthritis, an equally debilitating chronic illness that attacks body systems. My sister continues to fight. There are days when she physically cannot get out of bed because her body is in so much pain. Having researched lupus over the past month, I really have an understanding of what is happening to her. Have I told you, she's amazing? Have I told you how strong she is? That woman has more fight in her than anyone I know. I knew that about her a long time ago. Lupus just reminded me of that. She has a long road, and a lot of hard lifestyle choices she will have to make in order to reduce the number and duration of flare-ups that happen. She will need to journal what happens with her body and in her life on a day to day basis to trigger or relieve her flare-ups. Doing so will help her to see the patterns she needs to change, such as what the weather was like when she felt the most ill and what the weather was like on the days she felt the best. What foods caused her symptoms to flare-up? What foods helped? What events or activities cause her flare-ups to trigger and how to recognize what a big factor chronic stress will be to her own wellness. I want to tell you about my sister, because she's hilarious, and courageous. She struggles through a lot. She's amazing, she's a fighter. She has lupus and Rheumatoid Arthritis. To learn more about lupus check out these links.
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