I’m 41 years old, I wake up everyday wondering what’s going to work or not work, my BIGGEST fear is not being able walk…..especially down the aisle one day soon. I feel so fatigued everyday, the kind of fatigue which no amount of sleep would fix.
Hi everyone! Thank you for taking the time to read about the journey of my situation. I’ve always been a very independent person, took care of everthing! I’m requesting assistance to help pay for medical bills, medication co-pays, medicines not covered by insurance, transportation to doctors, daily life assistance, etc. I’m on disability. I must pay a monthly premium as well as a supplemental Insurance and dental/vision insurance. Bills just add up between all that plus co-pays, deductibles, test fees, doctor fees, cost of medicines which aren’t covered by insurance.
Unfortunately in 1999, my life was changed forever. I drove to work feeling like things weren’t quite right. As if things were moving but I knew they weren’t. My right side of my face by jaw line was numb, my right hand between my wrist & thumbnail was numb & I got nauseous. I thought I was having a stroke. I drove to Little Co. Of Mary Care Station close by. They did some tests, ordered me to a ENT, did a CAT scan, after seeing the brain lesions he sent me to a neurologist and got a complete MRI of the brain done. About 2 weeks later, everything was better or “gone” at that time. The doctor said it was a ” virus” or it had to be because the symptoms were gone by the time of follow up visit.
Unfortunately, with M.S. it’a a never ending “Russian Roulette” battle with no forecasting of what’s going to work or not work. In 2006, it came back with vengeance. I went to a different neurologist, who’s great, and he sent me for MRIS & a spinal tap to confirm what we thought…..M.S. finally it was confirmed & could be “treated” as best as possible.
I have been on Copaxone, Rebif, Tecfidera, now back on Copaxone. My white cell count is so low I can catch illnesses quickly & it takes extra time for me to recoop. I cannot switch medications until my white cell count comes back up anywhere near normal. I’ve been trying to get it normal for 3yrs. In 2014, I lost my job & had to apply for disability. My M.S. Copaxone injections cost over $2,000/month!!!!! I’m currently looking for continual financial medical assistance too.
To explain, my immune system attacks the nerve and dyelimates the protective coating on the nerve and exposes them causing permanent damage. My hands shake sideways uncontrollably, I have no stability when standing still, I have constant pain almost all over like pins & needles but yet I’m numb on my entire right side. I have no sensitivity to temperatures nor textures so I burn, cut, scratch, etc myself without knowing it. It affects my ability to walk, cant stand for long, right knee gives out alot, will help by using cane. I can’t even hold a milk gallon to pour milk in my cereal-too heavy. Terrible migraines which I have to buy special medication.
I don’t know what the future has in store for me but I’m petrified I may one day soon be in a wheel chair watching life from a distance. I’m scared I won’t be the wife my husband deserves and hopefully one day the mother my children need. I fear that I’ll have to depend on my loved ones who will become my full time care-givers. I’m such an independent person & don’t like turning to people for help but sometimes you have to. Sometimes there are great people like you who may even be just taking the time to read my situation. I wold appreciate any donations. Please rember to love each day. Be thankful for what you have today because it might be gone tomorrow. Thank you.