Chapter
1
My name is Kimberly Graves, and this is
my story. Interterstitial Cystitis or (IC for short) started with symptoms like a bladder infection,
only most of the time it would not culture into anything. At first it would come and go, eventually a few days turned into
all the time. I was told that it was so many different things, and none of them were right. It ranged from bladder infections,
bladder spasms, nerves, and so on...... No doctor would talk to me about what the real problem was. Most of the doctors were
more interested in getting me out the door, then taking the time to find out what it really was. So, like many other women
I began my journey from doctor to doctor. After 6 years I was at the end of my rope. It was then that I was having trouble
with my right overy, since it was twice the size it should be, the doctors thought it was pressing on my bladder. This in
turn caused the pain, pressure, and frequency that I was living constantly with. So it was decided for me to have a hysterectomy.
It was not something that I really wanted to have in my early twenties, but it was to late to do anything about it. Of course
after I got over the surgery, and felt better the bladder pain came back full force. That is when they finally sent me to
a urologist that knew what I had. It was interstitial cystitis (IC for short). He did a biospy that showed exactly what I
had.
Interstitial cystitis is the inflammation and irritation of the bladder. It causes pain, pressure, and frequency.
The main treatment is Elmiron, and pain control ( at this time). For some people the disease progresses fast, and for others
it goes slow.
Over the next few years I was given such treatments as: bladder distention, DMSO, Heprin, Sliver Nitrate,and
etc. These treatments did not help me at all, but they did managed to make me feel even worse. Most doctors do not want to
put up with the amount paper work that it takes to show that you deserving of the pain medication. They would rather look
the other way, and let you find someone else. No one should be left feeling the agony of having pain! It's not like there
isn't pain medication that can be given to you. They have been treating cancer pain for years. Why not use it for anyone that
has chronic pain. I got so tired of people telling me " Will you look great", hinting that I was really not in pain. Just
because of the way you look on the outside, does not mean that you are not in pain.
As time went on I just continued
to get worse. It was at this point that I finally had to make the decision to stop working. It was one of the hardest decisions
that I had to make. Here I was in my late 30's, and I had my whole life ahead of me. I never dreamed that I would end up giving
up my career, and most of the things that I loved doing, like breeding and riding my beloved walking horses. Now it is just
me, my husband, and my Siamese cats that keep me company. My Siamese seem to know when I'm in pain, and
offer their love unconditionally. There is nothing like the purring of a lovable cuddle cat, when you feel bad!
I love to go to bed with my three Siamese babies and have get under the covers and cuddle, and purr. For me they are
like having children.
It was at this time that a friend of mine told me she new someone that had IC, and she went to
see Dr. Daniel Brookoff. He was the first doctor that I found that treated the chronic pain of IC. I
can tell you that without his help, I do not think I would be here today!
Over the next several years we went from
one drug to another. I even tried an outside pain pump. It had an outside line, and had a small purse that you carried the
IV bag, and a small device that was a pump. Because of an outside line there was a one in a million chance that I could get
a spinal infection. Bing Go! I just happened to be the unlucky one. The infection on the tip of the catheter was putting pressure
on my spinal column. I started to have terriable pain that was going up, and down my spinal coulumn, and I was starting to
have numbndess in my feet. Finally when my temp. shot up to 104 degrees, the home health nurses called my doctor, and he told
them to get me to Memphis as fast as I could.
I think you can guess that I lost the pump, and had a major infection
in my spinal column. They rushed me to surgery and when I woke up I was in an IC unit. They had cut over 12 inches out of
my back, trying to get all of the infection out of it. To do this they had to cut out the the spiney bone that sticks out
to protect the spinal column. It was the only way that they could be sure to get all the infection, by flushing it out with
antibotics. I thought I new what pain was, but I found out that the body can take more pain then you could ever believe. If
I had waited another 12 hours I would have been paralized for life. I can only thank God for saving me yet another time. If
nothing else remember that you should not let anyone/anything thing stop you from trying something that might be what you
are looking for. You have to take the good with the bad, and put your faith in God. Who else knows what is best for us.
I
went home on Morphine again, only this time it was a much higher dose. I spent the next year and a half, in bed again, and
back on all my oral medication. One of the bad side effects of the pain meds. was that I was catatonic. Things started going
from bad to worse. The oral pain medication was taking its tole on my body. It was at this time that I was at my lowest, depression
was an understatement! Something had to be done, the oral pain medications were not working, and my body was slowly going
down hill fast. Never let it be said that chronic pain will not kill you. It does, but not directly! I was in very bad shape
despite all the medication that I was taking. It was at this point that my husband had a long talk with Dr. Brookoff, and
it was decided that the only other thing that was left for me to try was a internal infusion pain pump. I guess you can say
I ate my words. After the problem with the out side pain pump I had vowed to never do anything like that again.
My
doctor cantacted a friend of his that is a neuro surgeon. Dr. Feler agreed to put in the internal pain pump. I
went through the trial at the hospital for a week to see if it would work, and find the right pain medication to use in the
pain pump. They were able to find this information by doing a epideral with different pain medications for three days. The
drugs that worked best for me, were morphine and clonidine Now they do not do the epiderals. They actually use a form of outside
pain pump for three days letting you see which one will work for you. After that they put the pain pump in. Since I'm small
my doctor decided to go with the smaller pump. There are two sizes: a 18ml, and a 10 ml. The Remember
that know two people are a like, and what works for one person might not work for another. After a month I was able to reduce
the amount of pain medication from all the time, to just when I needed it.
God does answer prayers. It may not be
what you ask for, but he knows what is best for you. It has been over four years now, and I have had a fairly normal life
for someone that has been through "HELL", and come out on the other side. I still have to spend some days on the couch or
bed, but I also have days that I can get up and do things around the house, and with my husband ( Talton ). I thank
God for sending him to me. Not many men will stand by you when suffer constanly with chronic pain. Several
things that help are: his faith in God, the attention he pays to the doctors, and the extensive reasearch
he has done/and is doing on my disease.
The biggest problem for me now is to pace myself,
and not try to do everything in one day. I have had to look at what I can do, instead of what I used to do. It takes this
kind of attitude to turn your live around. I have found that I have to go at things a little at a time. If I do
to much, then I pay by having to rest again for several days, and take something for the break-through pain. You
have to have faith in God, to find out what your knew purpose in life is.
Chapter 2
The date is Nov. 2002, and I have had my pump for
four years now. It is at this time that the battery in my pump has decided to start slowing down. It didn't
stop all at once, instead it would at times it would surge, and others I would have to take oral pain medication to make
up the difference. This went on for several months, and thankfully it finally died, the battery that is. I now
have my second 10 ml pump......it should last another four yerars. It is back to working like it is supposed to, what
I mean is that it is doing it's job by taking care of my pain.
Chapter 3
It was in the first of Dec., 2002 that I fainted
because of taking a Maxalt( I thought ) for my migrane. My blood pressure bottomed out to 60 over something.
When my husband got home he found me unconious on the floor. He called 911 and when the ambulance took me to the
Hospital. They had to run an IV of saline in me to get my blood pressure to rise to where it should. We went home
thinking that it was a drug reaction to Maxalt. Several weeks later I had got up one morning and was feeling kind of
like you do when you've been cold turkeyed off and a medication. I picked up the phone and called my husband and told
him I felt strange........the next sound he heard was me scream as I hit the chair, table, and then floor............when
he got there he couldn't get me up, and this time we were sure that I had had a real seizure. The muscles in my arms,
and legs, etc.........were so sore I could hardly move, my back was black and blue, and I had bitten my tongue.
Also I was so sleepy, I could hardly keep my eyes open. In the hospital Dr. Brookoff got on the inter-net
and went through my medications and found that there was one that could have caused them. It was Flagyl! I won't
take that again, that's for sure! They did test after test to see if there was anything wrong like epilepsy, stroke,
etc.......We were happy to find that I didn't have any of these. We think that the Flagyl is what caused the seizure.
You don't know how much I hope it is. It is the scarry feeling wondering if you are going to have another seizure, and
hoping you want hurt your self when you fall. This is something that changes your way of life. I'm taking
a seizure medication called Depakote. Some of the side effects are: Gaining weight, and the lose of
hair. YUCK!! I certainly do not need to gain a lot of weight. When your only 5 ft and 1 inch. it doesn't
take much to go to the next size. Also in the state of TN. you have to go for 6 months with out having a
seizure before you can drive again. Looking at the other states it is a year, I got off lucky on that
one. I feel like a teenager again living with my parents and them grounding me from the car for the next 6 months.
Good thing my mother doesn't work so she can take me places. One side effect of the depakote is that it has helped
with my migranes. For this I'm thankfull.
Chapter 4
It is May the 28th and I have lost 20 pounds in
three weeks, after gaining it over the years that I was taking pain medication. It seemed like every medication that
I was put on would cause weight gain. After gaining up to 140 lbs for a 5 foot and 1 and a half inch frame that was
petite in shape. I decided to start on a diet made by Medifast. Medifast is a diet that you could only get
from a doctor up until now. The first thing you do is decide what products that you are going to have four times a day,
and then what type of protein bar you are going to have for a snack ( Chocolate Divine, Peanut Butter, Chocolate Mint, Crunchy
Lemon, Double Berry, and Oatmeal Raisin). You start by eating their products: oats, milkshakes ( French Vanilla,
Dutch Chocolate, Orange Delight, Swiss Mocha, Orange Pineapple, and Strawberry Cream), Soups, oats, and Protein Bars
(Chocolate Divine & Peanut Butter are my favorite). They also have special formulas that are for specific types
of diseases (Diabetics, Joint Health, Women's Health, and Coronary Health). You can either take the food for losing
weight, help your health, or both.
I decided to drink four shakes a day, and eat a
protein bar at night. Not only did the food taste great, but I was able to lose the weight without going hungry.
Now that I've lost the weight that I wanted to I
still drink two to three shakes a day, eat a lunch, and have a protein bar. It not only helped me lose weight
but it has given me the engery that I have not had for a long time. This comes from the fact that the Medifast
food contains vitamins, minerals, and plenty of soy protein. For those of you that have sugar cravings
because of taking pain medication this will certainly take it's place.
For more information go to: http://www.takeshapeforlife.com
or
Health Advisor:
Phone Barbara at: 731-784-2102
Chapter 5
It's March 21, and I quess it's about me update
you on the things that I'm dealing with. Several months before Christmas I started to have seizures. They put
me in the Hospital to find out what was causeing the problem. I don't have to tell you that I was afaird. They
found that a medication called Flaggel was what was causing it. I had to start taking depakote, and could drive for
six months in the State of TN.
We got that straighted out and I'm driving again. You
never know what meds. can do to you.....
Chapter 6
One night I was at the computer and leaned back in the chair
to ask my husband a question and fell. I hurt my tail bone so bad that I had to stay in be on my side for three months,
and I had to start back on the oral morphine for the pain.
Now I can sit for short periods of time, and it seems to
be getting better every day.
Chapter 7
A month ago I found a lump ( Lateral Defect Cystocell ) in
the vaginal track. It is very painful and annoying. I'm supposed to start taking PT this week. Then if that
doesn't work I go to have shots in the lump. Last resort is an operation. I wonder what will happen
next. It seems that I'm working my way down some sort of weird diseases. I just keep praying for the Lord to give
me the strength to deal with this new problem.
Unfortunately I had to have an infected wisdom cut out. Every time
I have this done the space where the wisdom tooth was got infected. It took me two months of antibotics to get rid of
the infection. Because of this I had to call of the Physical Therapy, until I was well enough to do the exercises.
While I was waiting I got out some of my favorite yoga tapes out to see if they
would wait. The first one is Lesile Sansone You can do Yoga. This is a very easy tape to do and it teaches you
how to do the poses the correct way. Then you have a good work out. After you can do the whole tape then go to
the best of the best alimacgraw, yogamind & body. This work is so great because you can learn to do all the posses
and not hurt your self. So many tapes say they are beginner, but they really can hurt you body. This is the best
of all the yoga tapes for chronic pain patients. Since we are not as active as we were it will help get your body in
good shape, help depression, help with many illnesses/injury. Do not get descouraged remenber how long you've been on
the couch or in bed. It doesn't take very long to get out of shape and gain wheight. I hope that you will try
these tapes, or CD's. If you like to walk then Leslie Sanone
Walk away the Pounds. Some of her tapes start at one
mile..............and go to 4 miles, their are even two tapes that do some floor work. Cross Training is great for your
body.
When you start cross training you can do a Yoga tape one day and then the next
day do a Walk away the pounds tape the next day. This helps you from not getting bored with the same tape you do over,and
over. You need only work three to four days a week.
A Good diet is the South Beach diet. They have a web site and several books
to read and a great cook book. You'll learn how to cook the way your grandmother did. You cook the food from
scratch using the recepies we start to cook a meal from scratch. It is so much better for you..........now can you take
what you have learned and apply it to our everyday life nd then you can slowly lose weight. There is a web-site for
the South Beach Diet: www.southbeachdiet.com
I wonder what else will happen as the pain pump
and I live out our lives together. I have know idea, but I'm thankful that God has given me the chance to find out! I
hope that God will grant you the gift of taking care of your chronic pain, and any other health problem that you are having.
Remember that that gift can come in some of the most unsuspected ways. Just be thankful, and enjoy the gift that has
been given to you from the Lord. You might be angry now, but later you can look back and see what you were able
to do while helping the Lord! Nothing is as bad as it looks at first, you have to have faith that God knows what is
best for us. Try and learn what he wants you to do with your life. Even if you are in terriable pain there is
something that you can do to make a difference, you just have to have faith in God to work through you. For me it is
working, and helping people like yourself not to have to go through what I had to do to just get a doctor that would understand
you! Also it keeps me sane, thinking that if I help you then you can help another.......etc. You never know who
you will meet.
To find information on Infusion Pain Pump go to:
www.medtronic, or for weight lose and health maintance: www.takeshapeforlife.com, or www.southbeachdiet.com.
