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: Patient Stories : Kristi
"You
Can Make It Through This!"
By Kristi Dickens
I could just give
up and not care anymore. I could put myself in my own solitary confinement.
Now dont think there arent days when I feel that way. I believe
everyone who suffers including Jesus has thought that way before. God
started our healing by giving us his son to die for our sins. Jesus died
for our sins because of his great love for us. I have to go on because
of his love for me and my love for him.
You see I am a chronic
pain sufferer. I have Interstital Cystitis. Most people would not know
it by its name. It is a disease of the bladder, which causes the lining
to stay irritated. I will give you an example of what this disease looks
like. When you have a blood shot eye that is what my bladder looks like
to the doctor who is looking in it through a tiny microscope. I have all
the symptoms that come with this disease. My symptoms include pain and
irritability, burning when urinating, extreme discomfort and pressure.
A way to imagine my pain would be to remember the last time you had to
go to urinate really badly but you were no where near a restroom. Can
you remember that pain and discomfort? Well, that is how I feel even after
I have relieved myself. The pressure is constant because of not being
able to fully relieve myself when I go. Sometimes I feel that I have to
go really bad, but I cant go at all. The pain can be mild to severe.
I never know from hour to hour or day to day how I will feel. Im
not trying to get on my pitty pot (the Lord knows Ive been there
before) but I just want others to understand how this disease affects
me and many others out there.
I have not had this
bladder disease all my life. It started when I was 18 years old. I went
to the doctor and was diagnosed incorrectly the first time. The second
doctor I went to did not know what was wrong. I really think that he thought
it was all in my head. You can rest assured it is not. I finally found
Dr. Randall who diagnosed me with Chronic Interstital Cystitis and Urethritis.
He first tried one of many medications. I found little to no relief with
the medications. I had surgery at the age of 22. By this time I had married
(at the age of 19) and I had a son who was 3 years old. Dr. Randall told
me that only a hand full of patients did not respond well to the surgery
so he went ahead with the surgery and cauterized the lining of my bladder.
Well you guessed it. I am one of the hand-full that it did not work for.
>
Dr. Randall has always
been a wonderful sympathetic doctor who would try anything to help me.
He referred me to a doctor in Birmingham who performed many tests on me.
Unfortunately he could not come up with anything that he felt would bring
me any relief. It is important that you know although at this time I was
not an avid church-goer, I did pray constantly for God to bring me some
relief. I had another child in 1994. My husband and I were very excited
to have another baby. Our family was now complete. We had our boy and
our girl.
It has been extremely
hard on my husband (Jimmy) to see me go through so much and not find much
relief at all. Jimmy has also been very understanding about intimacy.
I feel so blessed to have a husband like him.
Another part of dealing
with this disease is the battle with depression. I have been so depressed
that all I could do is sit, rock and cry. I am taking paxil for the depression.
There are times when I still get depressed despite taking medication.
I have always worked a full time job. Through each birth, surgery and
depressed state, I have continued to work. Sometimes I look back and dont
know how I have done it. Then I realized that I didnt do it. God
has given me the strength and courage to go on.
I went to another
doctor in Jacksonville, Fl to see a specialist in Urology. I sat in her
office waiting for her to come in and by the time she did I was in tears.
I explained to her everything that was in my records. She then gave me
some hope. She told me about a surgery that could possibly help me. It
is the Interstim device. She explained that it would consist of a battery
just like the ones they use for a pacemaker. It would be placed
in my lower back with a lead wire that would go through the tailbone and
to the nerves of my bladder. This device would re-train the bladder for
the frequency of urination by stimulation. I was told that the pain may
not subside but the frequency and urgency could get better. The first
step would be a temporary interstim that I would have for about one and
½ weeks. I felt hope for the first time in a long time. My insurance
would not cover me having this surgery in Jacksonville, Fl so I got on
the internet and found a doctor in Atlanta, Ga.
I made an appointment
with Dr. Foote in Atlanta. She went over the instructions for the Insterstim
Therapy. I had the temporary Intertstim put in and did not notice a big
difference. When I went back to Atlanta I was a little discouraged. She
told me at that time to keep turning the stimulation up on my external
battery I had at the time. When I get home I would steadily increase the
stimulation and started noticing some relief. We decided to go ahead with
the permanent implant at this time. This was done September of 2002.
It is now May 2003
and the Interstim is not working since the implant. My doctor here in
Montgomery can give me the only relief that is possible and that is pain
medication (hydrocodone) and bladder distillations. The distillations
include catheterizing me and putting a soothing medication in my bladder
while also stretching the opening to the bladder. This is all done with
a numbing medication.
I am 32 years old
now and will be transferring to a part-time position with the company
I work for because of my intermediate leave. I am currently on FMLA which
is a law that helps people with disabilities to continue working and take
time off when needed. I feel very fortunate that my boss has been willing
to work with me under these circumstances. I still to this day have to
take pain medication while working and have to go home some days or not
come in at all. I am hoping and praying for a miracle. I know that there
is a reason I am going through this. I feel that God wants me to share
my story to help others know that they are not alone and that if you keep
faith in him you can make it through the worst of times.
Kristi (& Jimmy) Dickens
Montgomery, Alabama
Revised: 3/01/05 - kj
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