I have Crohn's, I had surgery because I was infected &
hospitalized for 6 weeks because there was so much infection left.
My body rejects treatment. Doctor says surgery was premature when
they removed 12" of intestine & part of my colon and thats why.
He has a plan but Im at risk, Remiciad is "like" the other meds
& I may have a bad reaction. I cant live life in an ER, being
admitted & do it all over again. I always have on a nausea
patch and take both oral & dissolvable nausea meds, 16 pills in
the AM, 4 during day & 8 at night.Have a pottassium deff,
prednisone causes my legs to swell & they hurt. Have
hypothyroidism, high blood pressure, anxiety, also folic acid,
vitamin b12, & vitamin D diff's, & Im anemic.I want to be
an active mom, my child deserves more. UVA called yest and set up
my first 3 infusion appts, start week after next, be back 2 weeks
after that & 4 weeks after that but also be a trip in between
with the doctor to do my blood work which was very bad at the last
appt.Im disabled & with such a short work history my payment is
low & medicare is $110.00 out of that but Im glad I have it
because meds are well over $2,000 a month without it. Were well
below 200% below the poverty level. We DONT receive any help except
for disability & medicare. We tried for help but at that time
my husband was on unemployment, he was laid off & they said no,
our incomes were "unearned". Hes now working but it is only 25
hours a week & its a 45 minute drive each way. I hope that Ive
laid my life clear, I did the best I could. I'm going to have to
stay overnight nearby UVA for the first 2 infusions incase of any
reaction, I have no traveling money in our budget, no motel money
or money to buy food on the road. As embarrassed as I am for people
to see this, Im desperate to get help. I have the chance to have a
doctor that wants to help me, protect me from harm and money may
stop this because hes a distance away(2 1/2 hours) Im so tired of
being sick, I just need help.
