Disappointments and Letdowns

Wow! I really have not posted to this blog in a long time. I thought I had updated about my meds failing. I guess that is what happens when you get so busy. Anyhow, here is my post ranting about the most recent failure.

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So, here it is. I am so disappointed. Success with Enablex was short lived, and I am back to the twenty-four/seven diaper wearing. I thought I was going to be able to tolerate it, but my body rejected once again. I kept getting severely constipated after a period of time on the meds, and the nausea was excruciating. The longest I lasted was approximately a month.

My doctor tried to prescribe me another med. It has no generic and costs over $200 a month, even with my insurance. That is a joke. I do not want to spend that kind of money just for another med to fail on me. After that, there is no hope for me and this overactive bladder of mine.

I am bummed. I feel let down. I thought for sure I was going to be liberated. What is it going to take for me to have a normal life? Is that too much to ask? Really? I have all of this underwear I cannot even wear. I might as well just donate it to the thrift store or some poor folks who are desperately in need. I did not wear it all that long. Or, should I hold onto it for the next time there may be some fake-me-out success? I am so tired of being a part of this vicious cycle of success and fail, success and fail. I am tired of riding this roller coaster. I want to get off, for goodness sakes!

Some people tell me to just accept it. They try and tell me it can't be that bad and that there are worse things that can happen, like cancer and having a terminal illness. I suppose that is true, but it does not change the fact I have to live with this freaking yoke that smothers me. Granted that diapers allow me to lead a productive life, socializing with friends, working, being active outside the house and traveling. But, diapers are also a form of bondage to me. Diapers cause hassles that people who are without incontinence never have to face, such as diaper rash and yeast infections that occur often. If you have sensitive skin like I do, then it can be a whole barrel of fun. I also find diapers inconvenient sometimes because the rest rooms are not really set up to allow discrete disposal of them, so others cannot see, and the stalls are so small. Not to mention, you have to find a place to change when you are out. And things are going to be real interesting when I fly to Florida this summer. I wonder if I am going to have to strip because I am wearing one. That will be humiliating, as if incontinence is not already humiliating enough.

As far as accepting my condition is concerned, I have. What some fail to realize is that there is a difference between accepting and liking. One can accept having AIDS, but it does not mean they love having it. It does not mean that they won't have bad days and feel down on themselves. Healthy people are so clueless! They understand nothing of having a chronic problem. So, it is so easy for them to spout out of their mouths what we need to be doing. I have a feeling it if were them, they'd be crying about it like we do. They'd have good and bad days like we do. They'd be singing a much different tune. Then where will their praises about just accepting it, chilling out and getting over it be found then? Well, they won't.

I have accepted my condition enough to the point that I am very open about it. That is obvious, since I post my feelings, my triumphs and my failures with incontinence on this public blog and share the posts on Facebook. I am comfortable talking about it. I am not ashamed of it. However, that does not mean I love urinating on myself or love having to wear diapers. I have my good and my bad days. I sometimes cry and complain, and by golly, I am more than entitled to do that.

I also want to help others who have this condition get to a place in their lives where they can feel confident about themselves and have the courage to lead normal lives. Incontinence causes many to become reclusive because they are too embarrassed to leave their homes. There is so much shame and stigma surrounding this condition, and it all starts with the things that children are told during potty training, like underwear equals big boy or girl and diapers equal baby, potty equals good and accident equals bad. Being the spokes person for my condition and working hard to educate the public and break down the walls of stigma and shame is the way that I cope with having this condition. It gives me purpose and allows me to forget my feelings for a bit, provides a release for me and enables me to feel good by helping others.

I do want to end my post by saying that I am thankful for a supportive family. My family never judges my condition, and they never ridicule me. I am truly blessed because many with incontinence are not so fortunate. Some have been brutally embarrassed by parents and relatives because their families feel like they can help it and are doing this stuff on purpose and for attention. I cannot tell you how many horror stories I have heard during my time as an advocate and educator. Some are so heartbreaking and even disgusting. This is what keeps me doing what I do. and while I have been ridiculed and persecuted for talking about my condition so openly, it just demonstrates to me all the more that there is a need for people who have courage to stand up, go against the grain and show the world that incontinence is a health problem like anything else, and it should not be so stigmatized.

　
　
　

New Incontinence Support Group on Facebook

I started a new incontinence support group on Facebook. I did have one on Google, but it proved to be unsuccessful. I am pleased to say that the incontinence support group on Facebook is very active.


I have made this group a secret group to protect people's anonymity. There are many who are still very embarrassed and ashamed of their condition, and they do not want people to know they are in such a group or that they have incontinence problems. I want to be sensitive to their feelings. If you want to be added to my incontinence support group on Facebook, add me as a friend by either typing in my full name, Reina Grosvalet, or by typing in my email address, waldorfpc@gmail.com. I will accept your friend request. Once I do, send me a message on Facebook saying that you want to be added to the group, and I will add you.

I need to tell you of the group rules up front. They are as follows:

1. What happens in the group stays in the group. Some of my members are worried about things being shared outside of the group that the discuss. I assured them it would not happen. If it did, the offender would face consequences.

2. No infantilism and fedishism. My group is not the place for that kind of thing. My group is an incontinence support group where incontinent people can go to get support. Loved ones and caregivers are also invited to find support and learn.

3. Keep it respectful. It is okay to disagree, but please be mature about it.

That is all my rules. Not much, huh? I look forward to seeing you all in the group.