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.

　
　
　

Finally True Success

Well, finally, the Enablex on the 15MG dose is working well for me. It took me awhile for me to write this post because I wanted to be sure. I did not want to proclaim success when it would only be false hopes.

As you know from previous postings, I have had problems when trying to adjust to this higher dose. I suffered severe constipation and stomach pains. After going on and off the meds seven different times and giving significantly long stents of time in between, my body finally took to the drugs.

Now, I feel great!

My bladder, I think since I never have had a normal working bladder in my entire life, is working as it must. I can go a few hours now without needing to go to the bathroom, accept for when I drink tea, soda, water, coffee and hot chocolate. This I hear is normal, so I am not alarmed when this happens.

The bed wetting is not eradicated one hundred percent, though, and I still need to wear diapers to bed as a precautionary measure. When I need to go, sometimes, my bladder gives me the proper signals, and I get up and go to the bathroom like everyone else. Other times, I am not so fortunate.

I hope and pray these drugs always work for me. If they do not, I will be sure to let you all know.

Evaluating My Situation

For the past couple of days or so, I have been sitting here and evaluating my situation as to why the 7.5MG dose of the Enablex drugs were not doing their trick in the past six months or so. As you have seen in previous posts, the meds were doing me a lot of good and allowing me to function normally. I did not have to wear diapers at all, and I could hold my bladder normally. Now, things are different. There were some things that stood out to me that were different that I feel may have influenced the effectiveness of the medication in these past six months or so.

1. I have been under significant stress from August until now, significant stress. I have had financial stress because my job was not panning out like I thought. Things are getting better there, though, so I hope to see that stress disappear soon.

2. I had increased in my consumption of fountain sodas. Fountain sodas always went right through me, so this is likely contributing to why I’d frequently go to the bathroom on the 7.5MG dose since summer or so.

3. I have also significantly increased my consumption of coffee, hot chocolate and tea in the past several months. I love all three of these beverages; however, I am wondering if I will either have to curve my consumption of these or stop it altogether.

4. I have even had the occasional energy drink from time to time as a means of battling the chronic fatigue when it rears its ugly head.

I am wondering now if all of these factors are not present, including the stress that things will improve on the 7.5 again and get back to what was. When I was first on that dose, as you all have seen from past posts, I felt liberated. There were no frequent bathroom visits and periodic wetting accidents at night. I am almost certain I am right about these four factors influencing the effectiveness of the meds based on all of the literature I have read over the years; however, it will be a while before I will have a chance to consult with my doctor about this. I currently do not have insurance, and I do not want to pay a gigantic price just to ask some questions at an appointment. My husband did send the check for the premium, and the insurance should become active once it is received. Now, it is just a matter of waiting.

I do still have the 15MG pills, and I can alternate between the 7.5 and the 15MG pills to see if I can get my body used to the higher dose, like the doctor said to do. The thing is that the 15MG dose caused me severe constipation and stomach pains, and I know these are side effects of the meds. If I can afford to take time off work, like a week or so, I may be able to try something, but that is not seeming practical for my present circumstances. What I will try differently if I do this again is to increase my fiber intake to see if the constipation and the stomach pains will be nonexistent. On the 15MG dose, I was not wetting the bed periodically, and the other three factors I mentioned were not causing any issues. If I can eventually get the 15MG dose to work for me, I can cope with the stress and still have all my beverages that I want. I will not have to make any sacrifices, except for the sodas which I have already given up due to dietary restrictions. I really do not miss them, but the hot chocolate another drinks, I want to continue drinking them. We shall see.

My Enablex Experience Thus Far

So, while I have enjoyed success with Enablex, I invariably have suffered from the most common side effects that I have read about, a bladder infection and a kidney infection.

At first, I thought I was smooth sailing. I thought, Jee, it is so great to take the med and only have the most mildest side affect, a dry mouth. But the fun really began a month after taking the med.

It began when I felt like I had to pee constantly. I was so annoyed. I'd go to the bathroom, and then I would try to go again, just to see if I could get rid of that annoying feeling of always feeling like I had to go. After it went on for a few days, it occurred to me that I had a UTI of sorts.

I went to the doctor and took a urinalysis. Sure enough, I was right. I had abladder infection. I was prescribed antibiotics. A couple of weeks later, I developed a kidney infection.

I am fighting that kidney infection right now, as a matter of fact. I had this infection since this past Friday. I did not go to the doctor for it because I had enough antibiotics left over. Thank God, too, because I really did not feel like going to the doctor's.

Some of my friends asked me if I would discontinue taking the Enablex. I told them that I would not because I enjoy having full control of my bladder and love not having to rely on diapers. The infections are annoying; however, I can deal with them. What I think I am going to do is dramatically increase my daily water intake and drink some pure cranberry juice on a regular basis. I am sure that if I do that, the infections will be kept to a minimum or decrease until there are none at all.

I am going to have to discontinue taking Enablex when I become pregnant and when I breastfeed, though. It is not at all recommended to take Enablex when pregnant. As a matter of fact, I am not going to take *any* meds when pregnant, even those that doctors deem okay. Doctors say you can take some meds when pregnant, but I will not take any because I refuse to put any chemicals into my baby's body. I will not have to worry about any of that for a while because I do not plan to get pregnant any time soon.

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.