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Chronic Pain-network
The Story of my Life with Interstitial Cystitis
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The Story of my Life with Interstitial Cystitis
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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.

Capter 8
 
Will it is2005 and I have had a really bad year starting  with 2004 and ending in 2005, and what knows will happen in the next several years.  I've had several of new disease's, like:  Pelvic Floor Disorder, Vulu valuvastites, and it seems that this all goes along with IC and IBC.  Of of coures it makes my life diffucult.  And to top it off I got every bug that was going around.  I've spent most of my time in bed.  Last timt it took me neraly 6 years to find Dr. Brookoff, and I don't won'to find anyone else.
 
Chapter 9
 
Last month the Dr. ( Dr. Brookoff ) had the rest of the staff were closed down.  Due to money Problems!  Go figure! most.  Since their are few Pain Clinics it is hard find a clinic that has stopped taking new patients.  I made apts. to all the clincs and was not impressed.  They either were not what I was looking for or didn't want me because of all the diseases that I have.  I was at the point where you are very depressed.  Finally I was getting my Internal Pain Pump filled and my doctor ( DR. Wright, a neurologist at Symmes Murphy, that took care of my pump) saw me crying when he came in.  I told him the problem and he told me he had not problem taking care of my Pain Meds..  Finally my prays were answered!  I couldn't thank God enough.  Not only was he smart, but he was up on all the new information that was coming out on treating Pain.  It goes to show you that I should have asked him first and stopped all the time and anguis that I went through.
 
 

It starts with one person helping another, like a pepple through in the lake.  I feel that I have a purpose in life, and that ripples on, on........This is what God has given me a purpose in life, and that is to help others like myself that lost, hurting and need someone to get them started on the right path.

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Chronic Pain-network
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If one person helps another than it will be like a ripple that will keep helping others!

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Medtronic
 

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Chronic Pain-network!
by
Kimberly Graves

Matthew 21:22 "And all things you ask in prayer, you shall receive."