My Mission As Incontinence Advocate Makes a Difference

Two things happened in the last few weeks that reminded me of the purpose of my incontinence advocacy work. It is these two things that have definitely reaffirmed what I am doing is an awesome thing and that I need to keep on with it, despite any persecution I may receive as a result.

The first thing that happened was that a student from UNCC Carolina studying urology contacted me. He found my blog and was interested in interviewing me because he wanted a personal perspective. He conducted his interview through email. He asked me what a day was like living with incontinence and using adult diapers to manage Overactive Bladder. I told him what he wanted to know. I not only explained what a typical day with incontinence was like, I also told him what it was like to take vacations and how using adult diapers impacted those occasions.

I also talked about what life was like when using incontinence medications. I told him about my past experiences, as well as my current one.

He will more than likely be contacting me in the future, as he told me he would throughout his studies. I totally do not mind because I love educating people about this condition, especially if I can provide a new kind of insight.

The second thing that happened to me was that a woman in my incontinence support group that I run contacted me by phone and told me that the courage that I have taken to so openly discuss my condition and my willingness to help educate society and help others suffering from incontinence has helped to liberate her. She told me that rather than live in shame and lying to people about what her problems were, she was ready to stand up and face the facts. She told me that she felt she no longer had to allow Overactive Bladder to rule her life. Rather, she was going to rule it. She told me she was going to take the bull by the horns and face things head on.

I felt so touched by this woman that I almost cried when listening to her talk. I know that people before have told me countless times that they appreciated my work and what I do, but it was something about this woman that really touched me. I could tell she was so pained. I mean, she was so ashamed that she got rid of her boyfriend because she feared having accidents during intimacy, and she said it would be the death of her if her boyfriend found out. She told me her incontinence made her feel dirty. She told me that she went through several pairs of underwear a day and that she did not want to see the doctor because she was too embarrassed. She said that she was considering wearing diapers and just being done with it. I told her she really should get the courage to see the doctor, and I also told her what to say if her doctor ended up being the judgmental type, as some are when it comes to incontinence. I do not know, but I think some of these doctors get their degrees on their backs because the way they treat patients, when they know that incontinence effects people of all ages and has many causes, is absolutely crazy. I told her to ask about Enablex, the medication I take and see what the doctor said. I told her the meds were working for me and that if they worked for her, she could be free of the prospect of wearing diapers, at least until there was no way the meds would help anymore. I wished her well, and we will definitely be talking regularly, since she is also a part of the blind community. She really is one awesome lady.

Do you see, people, why it is so important that the view of society towards the condition of incontinence is changed? People fear being judged so bad that this condition actually imprisons them, forces them to isolate and give up doing the things they loved. It should not have to be this way. That is why I do what I do. It is my hope that through sharing my experiences, supporting those with incontinence, and doing my best to educate as many as I can that the walls of stigma are eventually torn down and that all people with incontinence can be liberated and freed from their prison of shame. I will not stop doing what I do until I either die or the stigma is gone, as God is my witness.

One Last Try At Being Normal: Taking a Trip to the Urologist to See About My Overactive Bladder

This week, I am going to attempt to go back to the urologist to do something about my overactive bladder. As many of you who read my blog know, I have been completely urinary incontinent for seven years now. I have depended on diapers to manage my incontinence. The last few doctors I've seen, one included a urologist, told me that there was nothing I could do for my condition, thus I would have to wear diapers for the rest of my life. I previously accepted that. Last year, though, things changed.

I got tired of just accepting that nothing could be done for my overactive bladder, so I talked the matter over with my primary care doctor. He told me that he could try me on Ditropan to see how it would work. Now, I took Ditropan when I was eleven years old for a brief period, but I had some negative effects from the medication. I started sleep walking, had hallucinations, and had terrible nightmares. I was taken off of it after a week of being on it. I told my primary care doctor about this, and he told me that I had nothing to worry about because it had been so long since I took the medication, and things would be different, since I was an adult. He also told me that these reactions were common in children. I agreed to try the medication again.

Ditropan did seem to work somewhat. I noticed that the amount of times I had to urinate were less frequent. I even found it possible to make it to the bathroom somewhat, but I still had a lot of accidents. I also found that accidents would happen when I was focused on things, like my work. Perhaps, this happened because I was so used to going in the diaper, and I had not used the toilet for so long. I was also wetting the bed every single night still.

I took the meds for a couple of months. During this time, I set a timer to remind me to take frequent bathroom breaks, and I had to stop work frequently to avoid getting so focused that I'd wet on myself. I wanted so bad to retrain my muscles to use the toilet. Because the meds lessened my urges, I was able to have slight progress. It was not good enough, though. I still had to depend very heavily on the diapers.

Though I was not nearly where I wanted to be, there were some things happening that gave me some hope. I was on the lowest dose of medication during that time. I wonder if things will work to the point of me being able to get out of diapers and wear underwear if I am given some sort of therapy to help me build my bladder muscles back up (I am sure they have somewhat atrophied because I completely relied on diapers for seven years now.) and the dosage of the medication is increased. That is why I am going to see a urologist.

I am really nervous about this. I am also scared of being let down. I know that taking the medication is only a temporary fix and that I will eventually end up where I am right now, back in diapers and very disappointed, but I just want to enjoy underwear and being normal for a little while. It has been so long since I wore underwear that I forgot what it feels like. I also somewhat forgot what it is like to use the bathroom on a regular basis, so I will have to relearn. It is going to be like I am potty training again. I have to get used to using the toilet instead of using the diaper. It is going to be very difficult at first because I am going to have to take scheduled bathroom breaks to work on daytime toilet training. When that is mastered, I can then work on nighttime toileting, if it can be achieved. Like a toddler, I am going to have to get out of diapers slowly, but I will not get rid of the ones I have left. I am going to keep them for when the meds stop working down the line. Diapers are expensive, so I will not trash them. I do hope, however, that I will not need them for several years.

There are surgeries that can temporarily correct overactive bladder. I say temporarily because they often have to be repeated, especially in the case of the Sacral nerve Stimulator. Or, the surgeries fail after a period of time, like in the case of the surgery that is used to increase bladder capacity. Also, the side effects of these surgeries are extremely serious, and from what I had read, the risks outweigh the benefits. Not to mention, special maintenance is required lifelong. There is a bladder removal surgery, but I am so not willing to have my bladder taken out and replaced by a bag that is similar to a colostomy. Forget that! I do not want to get out of diapers that bad that I severely change my life for the worst. I love to swim. I love making love, and I love so much else that will be ruined, if I were to consent to bladder removal. So, no way!

I thank God that my husband is very supportive and understanding of me during all of this. It really helps because this is a very difficult thing to live with, especially because society makes it so taboo. He lovingly takes time to listen to my concerns, and that really means a lot to me. His love and support makes coping a lot easier. God has blessed me with a fabulous mate who understands me and loves me for who I am. He is encouraging me to get help and do all that I can, and he told me that if things did not work out, he would not be upset. I am glad of that. My husband told me that so long as I tried my best that was what mattered. I will certainly try my best.

He has always been supportive and understanding, even before we were married. My husband and I have been best friends going on ten years. He has never judged me or thought negatively of me because of my incontinence. When we first became friends, I tried to keep it a secret from him. I never intended for him to find out, but he did on accident. When he did find out, he handled it quite well. He was so noble and kind about it. Sometime in the future, I will share the story about how he found out about my problem.

I will keep all of you updated about what happens at the urologist, as well as let you know about my progress.