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.

　
　
　

My First Official Day of Potty Training

Well, my first official day of potty training has not gone well.

First, I had so many accidents, six to be exact. I did stick to my bathroom schedule, but I had the accidents in between. This is certainly not an indication that I am ready to wear underwear for any length of time.

Second, I am having trouble getting used to using the toilet again. I mean, you have to think. I have been using diapers completely for seven years. Now, I have to train my brain and my bladder to communicate with one another again, so I can get the signal and go to the bathroom and not in the diaper. This involves a lot of concentration, so I am not able to get heavily involved with any kind of task. This includes my work.

I can now truly understand from an adult's point of view why toddlers dread potty training. It is so frustrating, and it can be very discouraging when you have a lot of accidents. I mean, it can make you feel really bad and shameful. I know that it does that to me. If I did not have the motivation to be normal and be free of the severe inconvenience of diapers, I'd so not care to deal with this. I am not giving up, though. I do not expect this to be easy, and I was told it would be difficult. I am going to hang in there because I know that it is worth it. Unlike a child who finds candy and other toys to be good incentive to remaining accident free, a trip to the spa for a full day pampering will be mine.

I wonder what tomorrow will be like. I do not count on it being any better than today because it can take up to two weeks before I see any results.
　

Hope for Normalcy

I promised that I would let you guys know how things went at the urologist today. To tell you the truth, things went well. It seems that there will be hope for me being able to control my bladder.

There is a new medication that is used for overactive bladder called Enablex. Unlike the other medications that are prescribed to treat overactive bladder, this one is specifically for this condition and this condition alone. I have been put on this medication at 7.5 milligrams and will be evaluated over a two week period to see how it works for me.

Along with the medication, I am expected to be on a voiding schedule to retrain myself to use the toilet again. I have to make myself use the bathroom every two hours. Even if I cannot go when I sit on the toilet, I have to sit there until I go. It is very similar to potty training a toddler. Also, when I am urinating, I have to try to stop my urine stream. The doctor said that I would see progress within a two week period. I certainly hope so, anyhow.

This process is going to be frustrating because it is going to be hard to do work having to stop often to retrain my bladder. It is worth it, though, if it means that I will eventually get to enjoy normalcy. During this time, it is going to be difficult to do work or go out anywhere because I have to be near a bathroom, until I get to a point where I can hold it and not have any accidents, and I am going to have to stop to go often.

After I get daytime down, then I have to work on not wetting the bed. I will have to wake up every two hours during the night. I will be doing this, until I can stay dry all night long.

I do not expect this to be a quick process. I also do not expect to get out of diapers quickly, either. It is going to take time to get to a point where complete control happens. Until I am confident that I can hold it for a long period of time, I will more than likely still use diapers when I go out and when I go to sleep. I have to have two consecutive months of complete dryness every single day and night before I am confident that I can completely wear underwear. I do not want any embarrassing accidents while out in public--I had my share of those--and I do not want to wet the bed. I am sure my husband will appreciate the precautions I am taking because I am one hundred percent sure he will not want to wake up in a wet bed. Quite frankly, I do not, either.

Now, even if I can attain complete control, I am still going to keep all the diapers I have left over. I am for the following reasons:

*Even if the medication works, there is a chance my body will get used to it, and it will stop working in the future. This is a risk with any medication.

*If and when I get pregnant, I will have to discontinue the use of the medication. This medication is still new, and it is not known if it will harm an unborn child or not. Personally, I will not take the meds, even if it is safe because I do not want to put any chemicals into my baby's body for any reason.

*I cannot take the medication if I decide to breastfeed because it is not known whether or not it can pass through breast milk. I only want to breastfeed because I do not want my babies drinking formula. Formula is artificial nutrition, and it is processed with chemicals, and I do not want anything artificial in the bodies of any of my children. Even if I cannot breastfeed, I will consult a milk bank or some other form of natural nutrition. But I will do every single thing in my power to breastfeed, like consuming twice the amount of fluids, eat a balanced diet, and do any other recommended thing to insure ample milk production. Most moms do not know this stuff, hence the reason so many women nowadays have so many problems with their milk production. Not to mention, feeding a baby on demand will also help with milk production. Sticking to a feeding schedule, something that is not good for babies' growth and development, will cause there to be problems with milk production. Many pediatricians continue to give moms the flawed advice to put their babies on feeding schedules inevitably causing milk to fail and babies to be put on the bottle and be fed that nasty formula. Thankfully, the benefits of feeding the baby on demand are becoming more widely known.

*the condition may worsen over time. If this happens, I will either have to increase the meds I am on or take something different. The surgeries are out of the question, and even my doctor agrees with that.

For now, I will work on getting myself to remain dry, and I will enjoy wearing sexy underwear while I can.

　

Common Potty Training Statements Offend (A True Story)

"You are going to be such a big girl when you finally learn to use the potty," said my friend as she was bringing her three year old daughter to the pot to sit on it. I was standing over at the fridge to get out a TV dinner that I would be eating for lunch. It was meatloaf, mashed potatoes, and corm. It has always been a favorite of mine. I stopped preparing the dinner and just stood there with it in my hands. I was taken aback by this statement she made to her daughter.

"Wait a minute. Why did you just say that?" I asked kind of hurt.

"I am just trying to encourage her to use the potty," said my friend.

"By lying to her?" I asked.

"I am not lying to her!" she shot back.

"Yes you are because diapers are not just for babies and being able to use the potty does not make you all grown up. I wear diapers, and I am an adult who is a professional business owner and powerful blindness advocate. And there are stupid immature adults who can use the potty who act like children and do nothing with their lives but sit on their butts and collect off other people's tax dollars. At least I am industrious and give a darn about earning my own and doing my part to contribute to society. Some baby, huh? I really am a stupid baby because I have to wear diapers? I hate the way society programs kids to think. Nobody is all grown up just because they can take a piss and a crap on the pot. Wow! Some qualifications to making one an adult! I am afraid it takes much more than that."

I did not give her a chance to answer. I dropped my TV dinner on the counter, not caring about eating anything at that point. I put on my slippers, and I stormed from the hotel room. I ran as fast as I could with tears streaming down my face. I was forgetting everything that I was taught about crying in public. I grew up knowing it was a very shameful thing to do and that one should keep the emotions in check in front of others. But this hurt too much. Fortunately, nobody was in the hall, except my friend who was completely blind (I honestly did not know she was there, until she called out to me. That was a real surprise.). She would not have known I was crying because I made no sound. The tears were the only indication of my crying.

"What's wrong," my friend asked. She was standing over at the elevators. "I know it is you, Reina, because I can hear your footsteps. Why are you running? Who or what are you running from?"

I got my voice in check and then said, "I am hurt right now. I hate the way people lie to their children to get them to use the potty. I hate it! I hate it! Saying statements, like "Diapers are for babies and using the potty is for big boys and girls." is so freaking stupid! It is stupid I tell you! It should be just as bad to say these statements, as it is to say racist comments. That crap should be considered hate speech." I was rambling on, but I just did not care. I was glad she was blind because she could not see the tears coming down my face, so I technically would not have violated what I had been taught. I did good to disguise my voice, so it would come out in an angry tone and not give any indication that I was crying. I am good to putting up that kind of front, you know?

"Do you want to talk?" she asked.

"Yes," I said, and my voice was barely audible.

We went down to her room. She was another floor below mine.

"So, what happened?" my friend asked. "Why are you all upset?"

I relayed the entire experience to her. She sat and patiently listened to me. She was a really good sport.

"I can understand how that will upset you."

"You do?" I asked.

"Absolutely," she said. "I understand that it made you feel inferior because you have a medical problem that requires you to wear diapers, and you are far from a baby. I can see how those types of statements about diapers being for babies and the potty being for big people would offend you."

Whew, I was so glad she understood. I was glad she did not judge me or write me off, thinking I was crazy because those things upset me.

"Do you want to go to the bar to eat and have a few drinks?"

"Yeah," I said. "But, I have to go back to my room to get my wallet and things. And boy, is my friend going to be happy to see me."

"I'll go with you."

"That may be a good idea," I said. "I do owe her an apology. I really did freak out on her. It was not her fault. She was only doing what society does to teach and motivate children to use the potty. She did not know any better, and she especially did not know it would offend me. Oh, I feel so bad."

We walked down the hall together to the elevators, and then we went to my room. I put the key in the door, and we both went into the room.

"Vonnie," I called to my friend. "I owe you an apology. I am so sorry I freaked out on you about the potty training thing earlier."

"Don't worry about it," she said.

"Are you sure?" I asked. "I really blew up at you. I mean, you did not know it would hurt me. After all, you were only doing what society programs parents to do to help children learn to use the potty and feel motivated about doing it. You were only following the propaganda."

"Yes, after I thought about it, I understood why you felt so bad. You know what you should do?"

"What?" I asked.

"You should go online to that support group you go on, and you should talk to them about how to deal with things like that. I think it would help you to talk to others who have to deal with the same thing and see how they handled it."

"I like that idea," I said. "Thank you so much."

"No problem. I am trying to help."

"Thanks, Vonnie," I said.

I went over to the desk where my computer sat, picked up my wallet and my bag, and I walked to the door.

"Vonnie," I said. "I am just letting you know I am going down to the bar to get some drinks. After that, I am going to hang out with some friends, eat some food, and probably go out shopping or something. If you need anything at all, call me."

"Okay."

We left the room. Boy was I so relieved that my friend understood. It was not like I was trying to be mean or anything. I understood she was only trying to help her daughter and was doing what she knew, but those statements send up rage inside of me. I wish they could never be used again. I find them to be dishonest and hurtful. The only way that such statements can stop being used is by not only educating the public about the condition of incontinence and how such statements make us feel, but we can also give people alternatives that will help encourage the children all the same that will not be so offensive.


Alternative Praises for Children Learning to Use the Potty

Wow! You did it! I am so proud of you!

Way to go! You are doing great! Keep up the good work!

Wow! You used the potty! Good work!

that is how you use the potty! See how good you've done! Awesome job! Let's see you keep on doing it.

If you keep using the potty and can stay dry, we will go and pick out your favorite underwear. You can pick out your favorite cartoon character or favorite color.

Do you know what all five of these alternative praises have in common? The phrases, "You will be a big boy or big girl." "Diapers are for babies and underwear is for grownups." or "You will soon be all grown up." are omitted. These alternative praises allow the child to feel encouraged and good about what he or she is doing, and it is all being done honestly without using phrases that continue to nurture the stigma of incontinence.

Potty Training Children without Using Comments That Are Offensive to Incontinent People

Nothing makes me madder than for people to say that children are now big boys or big girls for using the potty. Why does it make me so mad? Well, because it is so far from the truth.

I find such comments to be offensive. I can understand that parents need to encourage their children during potty training; however, I feel that potty training encouragement can be provided without having to lie to the kids. Yes, telling kids that they are now grown because they are using the potty is a lie. Sure, it is what most normal adults do. But what is not being considered is that there are many intelligent adults who are far from being babies that need to wear diapers to manage a medical condition.

I've potty trained a number of children, and not once did I have to resort to telling them that they are wearing big boy or big girl underwear or stupid stuff like that they are all grown up for using the potty. I've used other motivators. What I've done is as follows:

*Made potty time special by providing toys and books that can only be played with while on the potty.

*Used a whole lot of praise.

*Used potty treats and potty prizes.

*Played potty games to help pass the time and make things a lot of fun.

*Made the bathroom a comfortable place, such as by providing soft andfluffy rugs to keep the kids from having to walk on the cold floor, using a soft toilet seat, and making sure the temperature in the bathroom is tolerable.

I am pleased to say that all the children I've worked with have responded well. I plan to use these methods on my own children also. Never do I want my children to be fed the trash that diapers are for babies only. I want my children to be tolerant of people with all sorts of medical conditions. What's more, I want them to know the truth. I want to be one who contributes to making a stigma free generation. A stigma free generation will make life easier for individuals with incontinence.

Increasing Stigma Decreases Self Esteem in Individuals Suffering from Incontinence

This is an article that Ive written that talks about stigma and the dammage it does. It also talks about how orthodox potty training practices increases stigma towards incontinent individuals. Also, as promised, my full and unabridged story about my suffering will be shared. You can read it all by clicking here.