I could just give up and not care anymore. I could put myself in my own solitary confinement. Now don’t think there aren’t 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 can’t 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. I’m not trying to get on my pitty pot (the Lord knows I’ve 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 don’t know how I have done it. Then I realized that I didn’t 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 one’s 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
