- Most sickle cell patients get treated with meds
I was on meds when I was in school
I was on vicoden, or Tylenol or Ibuprofen
or whatever you use to get rid of pain
because sickle cell essentially
what it does is causes severe pain
while I was 20 years old of so I was in college
I was around 20 years old
and I kept have these strange allergic reactions
that were slightly weird if you could imagine
I was having
my eyes were swelling shut
my face was swelling up
I was having hives and itching
slurred speech
and I could not figure out what this allergic reaction was.
So I kept going to Doctor Williams.
At the time he was my hematologist,
and I was like Doctor Williams somethings wrong with me.
I was taking pictures of my myself taking them to him
that's how I look when I get these weird reactions,
and He's was like we're gona start taking away your lotions
that you use and change your lotions
and then we're gona change
you know your foods that your eating
maybe its a food allergy.
So over time we didn't figure out what it was
but one day I was sitting across the dinner table
from my room mate, we were studying.
Then I had, I dunno, I had a cup of water
but I had a headache
So I was like "uh God I have a headache"
She's like "Do you have any Advil?"
She like yeah
you know what give me one of those Advils
I need an Advil
and she gave me
an Advil
and I was sitting there and within 15 minutes
my face swelled up quiet big
and I was like
Oh.. this is it, this is that thing
that's been causing these allergy's.
So I was like okay no more Advil for me.
So I cut out Advil along with that Tylenol goes
cause Advil and Tylenol are closely related
and anything that contains them.
So I found myself goin to
pain specialists to figure out
what are other ways we can use to treat pain,
um.. because unfortunately for me I do live in pain
I mean its the story of my life.
I have, I was diagnosed with necrosis
which is the death of your bone in both shoulders
and I have it slowly forming in both hips
and that in itself cause extreme pains.
It's the joint on joint rubbing together causing friction
and for anyone including myself it is very, very painful
and it just continues to get painful,
especially when It's rainy, wet, cold, specifically cold.
The cold weather everyone says why don you live in Michigan
cause my family's here my base is here.
This is where I grew up.
Its not just easy to pick up and go
specially when you have something like this
that's weighing you down.
So as far as that, right now,
I'm still at my wits end with not taking medicine.
I can't take medicines for a headache or for general pain.
Everyday I live in pain
and you know I have friends who have sickle cell as well
and fortunately for them they can take a Tylenol
or say I'm taking an Advil and I'm going to go to sleep.
My brother can take an Advil and go to bed.
I can't,
and it has forced me to grow up a lot faster I think.
Also to understand what my limits are as a person.
I am often called a workaholic.
I have to go to work.
My work provides me with health insurance,
which provides me with the ability to get treated,
and seen by the best doctor there are at the U.
So I do have to go to work and work is very important,
that they understand that just because I have an illness
does not mean that
I am not going be available to them to work.
So within all of that
I have my family life and my home life,
and my mom and dad that are constantly looking out for me.
My parents take very good care of me.
My mom is often there
and she spends the night with me when I'm in the hospital.
At check in my dad's there.
And then my dad usually leaves cause he has to work
and my mom doesn't and she stays with me.
She'll stay with me for three, four days
until I ask her to go home and get some rest herself.
She does live with me and up at the hospital
She'll stay in a chair or in the bed with me if she has to,
cause I want her there,
because I have as I've gotten older
lost the kindness and ability to communicate with people
and tell them what I need.
Where as she knows what I need, she can tell.
You know she's thirsty, she's...
Mom, mom catches all of it,
She catches the anger, the frustration that I feel,
cause there's tears of anger
because I'm a very self controlled person.
I like to be able to take care of myself.
I pride myself on being able to do for myself,
and when I'm in that environment I can't do that,
and its very frustrating because I can't do that.
I can't take care of myself.
I can't, I can't you know potentially clean myself
like I want.
I can't brush my teeth, like I want.
I can't feed myself, like I know I need to eat.