Medical Assistance for Sharon Maddux

So when most of you see me, you see a person who doesn't look sick. I try very hard to hide it, But what you don't see is I am one of the many faces that have illnesses you can't see.


So I have several autoimmune illnesses started with crohn's disease in my teens, but back in the early 80's they didn't know that this open the flood door to other autoimmune disorders to creep in. I started showing symptoms of Lupus, Fibromyalgia, The rare Sjogren's Syndrome, Rheumatoid Arthritis, severe insomnia, chronic migraines, Chronic Middle Lobe Pneumonia, Severe Depression, Anhidrosis (also known as Hypohidrosis, the lack of being able to sweat causing me to overheat and pass out),(Interstitial Cystitis (IC) and now Chronic Asthma, Progressive Right Lung disease and complete hearing loss in my left ear and now the same loss of hearing symptoms in my right ear just to name a few of these.When they said progressive lung disease, I was like "But I don't smoke, I barely drink if at all" But once having Middle Lobe Pneumonia and almost dying, it turned into chronic Middle Lobe Pneumonia and each time it left more damage and scar tissue. Unfortunately they have to do lung biopsy, they can't knock me out. I wake up during procedures and surgeries. But when they said they had to do this, but do it while I was awake, you feel everything. When they flush your lungs, you feel like your drowning. We're still trying to figure out why it takes forever to knock me out or why I wake up during a surgery but I remember EVERYTHING.  For the last 10 years, I have always worked and worked hard no matter how I felt. If I could force myself to get up, I did what I needed to do. Since I worked I had great insurance, I was able to pay my meds, doctor visits hospital bills, credit cards etc.  Then came along The Affordable Care Act within 5 years I went from paying $125 to $700 a month just for me. I had to leave my job as a dog trainer at Petsmart because I was becoming really sick with chronic pneumonia but couldn't go into the hospital because I couldn't afford it and the insurance had a $10,000 deductible for medication and medical. I filed for disability and realized I was being too honest and was denied 3 times. The stress and anxiety took it's toll on me. I'm on my own with my dogs. I can't tell you how much that scares me. The worst part is all the meds they could put me on that work on at least 3 of my autoimmune illnesses, I did a trial study on 80% of them in my 20's because they saw they were helping people that had crohn's and they were going into remission. But slowly, I started having serious reactions that I almost died when they gave me a remicade infusion and I went into full cardiac arrest.  Unfortunately, this is my life. I try a medication once, then I have a reaction. My doctors call me medically complicated because they are trying to figure out which illness is triggering all the issues. So now, with only two choices of insurance which cost me $569/month and I might as well not have any, Missouri didn't expand Medicaid for people like me. Me as being in my 40's. I'm too old for medicaid but too young for medicare. After my recent hospitalization Jan 1st, they found nodules on my right damage lung and Chronic Asthma. Where I used to be able to get up and get myself going, now I fight to breathe and can't work at all. My doctors have tried different infusions on my that cost just for the drug only $21,000 and my cost was $7,000, it had to be done 3 times in 6 weeks so I maxed out credit cards. when I couldn't afford my insurance I put it on my credit card, when I couldn't afford meds, I maxed my credit cards out. I tried to getting financial support application from each hospital but denied because my assets which is my car, life insurance and back accounts which have nothing worth taking, Even if I cancel my life insurance it would leave me $3000. I have been going round and round trying to play their games till I finally hit my lowest and darkest times last year. It's hard to admit this because I always keep strong and just push on but I wanted to commit suicide. I just couldn't take it anymore. I stayed in my house and kept looking at these mounting bills, phone calls from bill collectors, doctors putting me on more meds that weren't covered by insurance, So, I came off of everything except my thyroid and hormones. To make some kind of money I have been doing private dog training and dog sitting. I was doing really well for 4 years till last year, things change. I was always booked months in advance and was always able to pay my credit card bills and some of the smaller medical bills to not be able to get gas for my car, or food for my animals. If you know me, I gave up everything for my animals. I've have always given back to my community through dog rescue. Making donations where I could. I sold most of my stuff to help fundraise for dogs that game in my life that needed medical care. I didn't care, it's just material stuff to me. For the last 6 years I have volunteered with Dogs On Duty to help support local working dogs and recently Dog therapy with my Great Dane Rebel. But now with my asthma, I had to stop until my doctors try and figure out what is going on with my. All my autoimmune illnesses are out of control. The main one Sjogren's Syndrome is attacking my lungs especially my damaged left lung as well as my eyes, teeth, hearing. I have a lot of pride, and my parents have been helping me lately with my health insurance but, I realize all the giving back to my community, I need help and that's a hard think for me to say. I recently had to rehome 3 of my birds because of their feather dust. I feel like I'm losing this battle. I'm on an autoimmune suppressant and high doses of prednisone steroids which is a love/hate relationship with me. The go to drug when nothing will work is steroids and it makes me experience basically a new emotion every 5 minutes. It's horrible. But i've been confined to my house for almost 3 months so I don't compromised my health by getting sick until I see my new pulmonologist. I can't afford to go back to the hospital. But we know between the inhalers, nebulizer, steroids autoimmune suppressant, I know my body and things aren't getting better. i've always been an open book about my health. I recently cut 6 inches off my hair because it just falling out, so I wear a fake ponytail., my teeth have decayed because Sjogren's Syndrome attacks all my moisture glands, so I only make about 2 % tears, saliva, causes dry skin, the inflammation builds up and blood capillaries burst under the skin in my legs and now I may have to give up my drivers license. because my eye vision changes from day to day.  I'm out of hope and without my animals, I know I probably wouldn't be here. They saved me many times when I have given up. I'm out of options, I have nothing left to sell that anyone wants to buy. I have to start the social security disability over again with a new lawyer which can take years. 


When Leanne talked to me about to a fundraiser, I had very mixed feelings. This is for people that have lost their house, for first responders and others that have lost their life or major medical issues such as cancer. I'm absolutely lost and don't know what to do. I feel like this is my problem and need to figure something out. But again, I have sold everything of mine I could. The real number what my total medical expenses would be jaw dropping almost $100.000.00 + But I don't expect that type of help. I just need help paying somethings off so if I need medicine or things just to live day to day, I can specially this useless Affordable Health Care Insurance. I am really trying to stay positive but it is so overwhelming and when it's just you at home left to your thoughts it's scary. I have applied for medication assistance but have been denied due to my assets which is ridiculous. I just keep taking punches left and right with a new diagnosis around each corner. 


So when you see me and I look fine, It's because you can't see what's going on inside which is why it's call Invisible Illness. And lucky me has about 10 as of today that fight against one another then attack my body. This is so hard for me to admit, I need help. Since I don't have a job, I can't get a loan to consolidate bills. I've worked hard up till 2017 and I still work hard dog sitting and training even on my bad days, because it makes me forget my mounting issues. 


One illness was manageable when I had crohn's which is in remission but I'm not eligible for research studies and i've applied to many. I want to continue to keep doing what makes me happy. Working with dogs and volunteering, without this, I feelabsolutely useless and not being able to contribute as I have for some 32 years. I get angry that out of all that, I paid enough taxes that when I need a little help, I would get it. I don't know how some people work the system, but I guess i'm too damn honest.


So please don't think this is an easy thing for me to do is ask for help. It goes against everything i've done over the years.God knows there are people worse off than me. I feel lower than low.. But I just don't know what to do.


Thank you for taking the time to read my story. There's so much more coming up that I'm just not ready to go there yet.
 
Sincerely,
Sharon Maddux