Couple with MS can’t pay bills after flu pneumonia

My name is Bethany and five years ago my husband Daniel was diagnosed with Multiple Sclerosis. It took the both of us on what I like to call a rollercoaster ride from hell.  He began do decline rapidly to the point where he could no longer work.  Disability took forever as it usually does and left him with virtually nothing for a monthly income. MS diagnoses generally happen when you’re in your thirties so imagine what you’ve accrued in social security in that time.  Virtually nothing. It is also one of the most expensive diseases to have. Just his medications alone cost over $150,000 a year.  That’s not counting visits to specialists and MRIs and other testing. How do we afford this? We simply can’t.  Most insurance plans through the market place only cover 50% of special meds, so in that case we would still be responsible for $75,000 out of pocket just to start. I had no choice but to cut back what I was making at work so that he would be eligible for government assisted insurance.  Two years after his diagnosis since he was on disability he was automatically switched to Medicare which only covers 80%. So we supplement with the government funded insurance which means I can still only make so much income or he does not qualify. It is a constant battle of stress living in such tight means but I know he has what he needs. I currently work in the restaurant industry and about a week ago came down with the flu. I tested for covid to make sure I wasn’t putting coworkers or anyone at risk and that came back negative. Daniel is extremely high risk so naturally I tried to get his to stay with someone and he refused. I can’t make him do what he doesn’t want to do and being extremely disabled I understand him not wanting to leave home. That just meant that while sick I had to also constantly sanitize to minimize spread.  For 7 days I had the worst fever and I couldn’t go back to work until I was no longer contagious.  This morning I woke up with a fever of 104.8 and had to drive myself ( Dan doesn’t drive anymore) to the emergency room.   Every time I would take a step or try to move my heart felt like it was going to beat out of my chest.  I also need to add that I do not have health insurance. I cannot afford it. I try to make sure he has what he needs first and foremost.  While at the hospital they did bloodwork and a chest X-ray and confirmed that I now have pneumonia.  Sent me with two antibiotics on my way and said to return if there was no improvement in 48 hours. I still have a fever. I forget what it feels to not be sick at this point. So now for an additional 5 days I’ll be staying home from work as per doctors orders. We live on too tight of a budget for me to miss a whole pay period   Worth of shifts. We just simply can’t afford it. I am typically a person of great pride, but in this case I realize I can’t help the fact that I got sick and to not beat myself up over it. I never like asking for help either, but in all honesty we need it.  Anything you could do would be greatly appreciated. Thank you so much for your time.


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Bethany Nappi 
Pittsburgh, PA
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