Hi, I am Jenn Schoch and I’m 55 years old. I have been up all night trying to figure out a way to not have to do this, but I am unable. I know it was only last month that I had a fundraiser, and you all had my back and supported me in such a beautiful and loving way with some school and medical expenses, and I’m so deeply grateful for your compassion and kindness and generosity. I have a rather severe case of systemic lupus, as it affects my brain, CNS, kidney, colon, liver, skin, mesenteric blood vessels, on top of its normal havoc of joints, etc. I also have rheumatoid arthritis, Sjögren’s, severe neuropathy, Chronic Kidney Disease/ Lupus Nephritis, Dermatomyositis, Celiac, Epilepsy, Antiphospholipid Antibody Syndrome, Coronary Artery Disease, Chronic Pericardial Effusions/Pleurisy, Common Variable Immunodeficiency, Hashimotos, POTS, Gastroparesis, Inflammatory Bowel Disorder (related to lupus) and Raynauds. Yes I know it’s a crazy amount of stuff! Twice since last October I have been hospitalized 2 hours from home for several months with a condition called Neuromyelitis optica, which makes you go blind and paralyzed. It relapses and remits. I also have high output from my colostomy, which aggravates my POTS, making my bp very low and my heart rate high. I have actually fallen multiple times in this state of being. I also have diabetes insipidus, which makes you urinate a whole lot so it’s a double whammy of dehydration. So I get iv fluids at home, which I do myself. I’m a medically retired NP (disabled). If I can’t get my myfortic (cell cept long acting) —cost is $450 every 3 months and I have 2 more weeks until I’m out. And Dapsone (antibiotic to prevent possibly fatal lung infection because I’m on rituxan) is $240 due at same time, also a 3 month supply—I will literally die without my meds—lupus will kill me, that I know. I’ve been close several times. I won’t need help forever. I am in school for my Masters in Data Analytics/Health Informatics and in 2 years I will be making 6 figures instead of disability, which isn’t much. Then I will really be able to pay it forward and help others. I will also start the Lupus And Me Foundation, something I’ve always wanted to do. Well, I have some more issues cropping up with iv infusion costs, as I’ve needed fluids more lately due to more output, plus POTS/Low bp. I have CNS lupus and a multitude of other autoimmune illnesses and we lost our oldest son in April to a fentanyl OD—it’s been devastating and I’ve spent 5 weeks in the hospital due to how the stress affected my illnesses. I will never be over it. I just hope I can be there for someone else going through it Love you all, Hugs, Jenn I have severe gastroparesis, (for 20 years), which causes severe nausea with vomiting at times. I’ve been on every nausea med there is and they don’t work anymore, or they cause horrible side effects—except one—Generic Emend. It’s usually used for chemo. My GI wants me to have as he said I am heading toward a feeding tube—and TPN—That stuff can killl someone like me—severely immunosuppressed—not because my weight is super skinny yet like it was last fall (I’ve been on super high dose steroids for 9 months ) due to gastroparesis and lupus colitis (very similar to ulcerative colitis). But I’m simply malnourshed. Working on it as good as I can. It’s not fun to eat when I’m in wave after wave of severe nausea. The problem with Emend is the cost. My insurance won’t cover and good rx is $666 a month for one pill a day, which is how I’m being ordered it. The myasthenia gravis and Sjögren’s also contribute to the nausea. I can’t possibly afford that. I can’t even afford my pilocarpine for dry mouth from Sjögren’s, or colchicine for my pleurisy, or any number of meds—they are all $47 a month ugh! I am going to try to get it—Emend—from the company, but since I need special dosing (daily instead of 4 days a month), it will most likely take 3-4 months or longer. I will update here whenever I get correspondence. I owe the infusion company $250 again, and they soon will need me to pay that before they deliver it. I have multiple miscellaneous expenses related to school, med copays ( most at starting to run $47 a month and I just don’t have it), I will update what they are later—in way too much pain right now. Multiple dr visits 120 miles away coming up, that will necessitate staying one night in a motel in Pittsburgh and stacking appointments. Dr Copays I don’t have thankfully. I will straighten this up later today, when I’m at the hospital getting one of my days of IVIG. Thank you all in advance! You are the world to me—- I’m so grateful for your donations and your prayers and love and positive energy. You are literally helping me to live! I am going to try to get a book of my poems put together to be given as a gift to any one who donates. I’ll have a reasonable estimate on that this weekend, when I can sit down with it. Thank you ❤️ Love you all! Love and hugs, Jenn #gratitude #thankful #miracle #beautifulpeople
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