Hi, I'm Kimberly Lovius and I was diagnosed with Multiple Sclerosis in July of 2014. I spent about a year prior to the diagnosis trying to figure out what was wrong with me all the while baffling all my doctors. Finally in July I came home from my grandfather's funeral on a Friday and woke up on Monday not able to walk or use my left arm and numbness through my whole body. I had been suffering extreme weakness, fatigue and imbalance along with incontinence and numbness in my mouth, hands, legs and feet for months prior to this final break. I was constantly at the doctors going through test after test with no relief.
I went to the ER and was admitted for a week once they found spots on my brain. After a week of tests, MRI's and a spinal tap the doctor at the hospital walked in told me I had MS and walked out of the room leaving me to figure out if I was going to die, walk again or if I continued to have a life what it would be like. A nurse came in shortly there after and helped me deal with the diagnosis as best she could. If you haven't ever been given this type of news please know it isn't something a person should be give when they’re alone. I was devastated and too be honest still am.
I struggle with all daily tasks like showering, laundry, cleaning, cooking and just generally functioning. Some days are better than others but I just never really know. I can only be on a computer for a short time before I get a terrible headache and can see well out of my right eye, type or spell. I still have all the same symptoms I had when I went into the hospital along with new ones. My legs, hands, arms and core are completely numb. My balance most days isn't good and I have trouble swallowing and using my hands most days. Because of the numbness I have trouble with feeling things in my hands and feet including things that can hurt me. The fatigue and weakness is overwhelming. Some days I can just shower and I am so tired I have to go back to sleep. The doctors are telling me this is due to the active MS in my spine and maybe the fatigue will get a little better as time goes. They aren't sure the other symptoms I have will ever go away.
I travel back and forth to Cleveland Clinic for treatment. I have tried several medicines but to this point nothing has really worked. I am now on a once a month IV infusion treatment called Tysabri. This drug has the potential to cause a brain infection but the doctors think it is my best chance at getting this progression of this disease under control. With any life long chronic illness I am at the doctors a lot! The cost of the trips to doctors, treatments, prescriptions and just daily life expenses has become overwhelming. I used to be able to work full time, help support our household and hold my own. I worked creating educational programing to help those who were less fortunate and needed a lift up in their lives. People who needed a chance at something better. I am so sad that I can no longer do this work and now am the one who desperately needs a lift up in my life. My husband is wonderful and tries so hard to support me as does my family but this burden is a hard one to bare.
I struggle with the disability company all the time. Both short term and now long term disability since I was diagnosed in July. They do every thing they can to not send my checks and every month I worry how I am going to pay for prescriptions, doctor co-pays, hospital bills, general bills and get to treatments. Every month the stress and worry flairs my MS even worse and causes the depression I feel because of the disease to deepen. I feel like such a burden to everyone in my life. I hate that I have to ask for financial help. I've always made my own way, paid my own bills and taken care of myself and others. I'm not one to ask for help and it has taken me months and prodding from a very dear friend to post this and ask for help. I really need help. We have used all the resources we have to keep us a float but are now tapped out.
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