My Struggle With a Debilitating Illness

AS TOLD BY TANYA SALAY

Until just a few years ago, I was a very active mother and a full-time minister in the small town of Luverne, Alabama. Life here is peaceful and slow moving. Everything seemed to be going well for me and for my husband, Duke, and my young son, Daniel. Then a simple operation led to a big change in our life-style.

 OUR problems began in 1992 when I had a hysterectomy. Shortly afterward, I started experiencing constant excruciating pain and frequent urination (50 to 60 times a day). My gynecologist finally made an appointment for me with a urologist in an effort to pinpoint the cause of the problem.

I went to a hospital for some tests. On my first visit, the urologist diagnosed my problem—interstitial cystitis (IC), or debilitating bladder inflammation. It was not easy to diagnose because the symptoms of IC are similar to those of other disorders of the urinary system. Furthermore, there is no definitive test to identify IC. Therefore, doctors must rule out other conditions before accepting a diagnosis of IC.

Our doctor bluntly said that since treatment was of little avail, the end result would be removal of the bladder! He said that there were other treatments but that they were all unsuccessful. Needless to say, that was quite a blow to us. I had been fairly healthy up until this time. As Jehovah’s Witnesses, Duke and I had been in the full-time ministry for a number of years, and now I was told that my bladder needed to be removed. I’m glad that I had good support from my husband.

We decided to look for another urologist. We tried several doctors. Unfortunately, at that time many doctors knew very little about IC. Also, many urologists have their own theories about IC, so the recommended treatment differs from one to the next. One medical source states: “The disease tends to be chronic.” Another says: “Scientists have not yet found a cure for IC, nor can they predict who will respond best to which treatment. . . . Because doctors do not know what causes IC, treatments are aimed at relieving symptoms.”

I was in so much pain with the cramping and the frequency of urination that I was willing to try just about anything the doctors suggested. I’ve tried well over 40 different medications as well as herbs, acupuncture, nerve blocks, epidural and spinal injections, and transcutaneous electrical nerve stimulation (TENS), in which mild electrical pulses enter the body for minutes or hours. I did as much research as I could, which at least helped me to understand a little about what was happening.

Presently, I am on methadone, which is a pain reliever, along with six other medications. I also go to a pain clinic regularly, where I receive epidural injections along with steroids to help manage the pain. For the urination frequency, I go to the hospital about every three or four months for a procedure called hydrodistension, in which liquid is used to expand the bladder like a balloon. I have had this done quite a few times. It typically gives me relief for some months. I have been in and out of the hospital over 30 times during the past few years.

What about the ultimate remedy, the removal of the bladder? One authority says: “Most doctors are reluctant to operate because the outcome is unpredictable in individual patients—some people have surgery and still have symptoms.” So for the present I am holding off on that option.

At times the pain is so severe and constant that it would be easy to give up. The thought of ending it all even passed through my mind. But I couldn’t bear to think of the reproach such a course would bring on Jehovah’s name. I can see the importance of prayer and personal study as well as developing a close relationship with Jehovah, for you never know what may happen that will change your life. This relationship has literally saved my life during my illness, since I know I would otherwise have killed myself.

As I look back over these nine years, I see how fast life can change. I appreciate the  words of Ecclesiastes 12:1, which says: “Remember, now, your Grand Creator in the days of your young manhood, before the calamitous days proceed to come, or the years have arrived when you will say: ‘I have no delight in them.’” I am so thankful that I started in the full-time ministry when I was 15 years old and was able to continue for almost 20 years. During that time I developed a close relationship with Jehovah.

I am thankful to Jehovah for my husband and my son, Daniel, who have been so supportive. Also, it’s very encouraging when those in the congregation call on the phone or stop by to visit me. It is hard for me to get out in the winter because the cold makes the spasms worse. Then I do telephone witnessing, which keeps the hope of Paradise constant and real to me. I look forward to the time when sickness and suffering will be things of the past and will not be called to mind.—Isaiah 33:24.