Bladder Issues Archive

22

It Was A Success

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“Persistence and resilience only come from having been given the chance to work though difficult problems.” – Gever Tulley

I recently received a suprapubic catheter. The surgery was completed with no problems or complications. The main reason I had surgery was I no longer held complete control over my bladder function and the catheter will help me regain that control.

It was an outpatient procedure that lasted an hour and a half. My urologist and his team made me feel so comfortable during the preoperative instructions and evaluation that I urged my mother to stay home. My husband was there and that was enough support.

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Despite my comfort level with my doctors and the surgery, I still had the normal pre-surgical jitters.

So to ease my doubts, I persistently played in my head the reasons why I was getting the procedure done. I remembered the sleepless nights. We were waking up every three hours to use the restroom. I vividly recalled the times I returned home from a night out wearing wet soggy Depends. I called to mind dozens of ruined outings due to a weak bladder and the endless anxiety about the “restroom situation” every place I went.

I used all of these memories as my motivation to continue with the surgery.

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Now the big question is…

So, was it worth it?

The answer is…

An overwhelming YES! I would do it again tomorrow.

It’s been less than a week but so far so good. And as we all know, there is a learning curve with everything. So as I learn, I will let you know. But for now it seems to have worked out.

It was a success.

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23

Wish Me Luck

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“Life is a crisis – so what!” — Malcolm Bradbury

Over the last few years, I have had bladder problems. Before now, it was simply an inconvenience. But lately it has gotten out of control.

Everything I have tried has failed. I’ve been on various medications. I wear Depends religiously. I’ve even tried self catheterization, with little success.

I am still aware of when I need to pee; I just cannot get to the toilet in a timely fashion anymore. And when trying to use the restroom, timely is the name of the game.

I’m just simply tired of “accidents”. So this week, in an outpatient procedure, I will receive a surgically implanted suprapubic catheter. My urologist tells me it’s common for patients with multiple sclerosis.

What do you think?

I’m not really clear how visible it will be or how often it will have to be changed. Basically, I have a lot of questions. I’ll be sure and write them down so I can get the answers during my consultation.

I just can’t wait to be happy and dry. Wish me luck.

51

Pride Wins Again

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After my husband paid the bill, the receptionist slowly ushered him to the side and whispered, “It’s getting hard for us to pick her up. We need you to stay if she comes back.”

If?

I have talked about going to the hair salon a couple of times. I consider it one of my few real treats. The problem is, lately the hairdressers have to help me out a whole lot. I need help getting in and out of the chairs for washing. And drying my hair is the worst part. I am already weak and once I get under the hair dryer it zaps all of my remaining energy right out of me.

But nothing compared to what happened during my last visit. I asked the hairdresser to stop so I could use the restroom. I probably needed someone to close the door, help me pull my clothes down and physically get me to the toilet.

But I didn’t say anything. Nothing.

I just rolled to the restroom alone. Was it my pride or did I really think I could do it myself? I’m not sure. But as the urgency to micturate increased, I began to panic. Once I entered the restroom, I realized I should have asked for help. Then before I could make it to the toilet, I fell on the floor and urine spilled from me. It was all over the restroom floor then migrated into the hairdresser area.

I was so embarrassed!

Two women from the salon had to come into the restroom and help me.

After that incident, I really understand their reservations about having me as a customer. I can be a handful. And I must give it to them; they went above and beyond. Often, it’s like they were nurses to me. For this reason, when they voiced their concerns, I could not complain. So when they asked my husband to remain in the salon for the next time I come, I was just ecstatic that I could even return.

I guess MS won this round but I’m not giving up. I just hope my husband starts staying in the salon while I get my hair done. This is huge because I know he doesn’t want to stay there for hours at a time. I’m there for 2 to 4 hours, depending on what I’m getting done. Hell, I don’t want to stay that long either!

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23

Parade Days

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Last week I was in the hospital for two days after having an adverse reaction to my latest prescription. The symptoms were so bad that the doctors first thought I had a stroke. It wasn’t until all of my test came back negative that we linked my sudden change in health to the new medication.

Before this happened, I was excited because it is Carnival time. I have been going to Mardi Gras parades in New Orleans, Louisiana for over 30 years. But this year just wasn’t the same. I can’t put my finger on it but I didn’t have as much fun as usual. My guess is, since I really hate being in a wheelchair, being at a parade in a wheelchair just wasn’t enjoyable. I don’t like when people stand in front of me blocking my view. It’s funny because everyone is nice until the floats start throwing trinkets. Then it’s every man for himself. Also, bladder issues can cause a real headache especially since the portable restrooms provided by the city are not wheelchair accessible.

But my best guess at the source of my newfound melancholy feelings toward attending parades is the fact that I have been extremely tired lately. I am so weak these days that it’s hard to enjoy myself at events, especially ones that take so much energy. Parade days are all-day affairs that can last 5 hours or more. And there are usually multiple parades. The recent one I attended was actually three different parades. This is something I did all the time, but nowadays it’s just too much for me. And being only one day removed from the hospital didn’t help either.

After I made it home from the parades, I decided I would not attend anymore because they are just too taxing on me.

Moments later, following my declaration, I saw a picture posted by Steve Gleason* at a Mardi Gras parade. He helped me put my overreaction into perspective. So now I have decided that I won’t totally stop attending Mardi Gras parades. I’ll just adjust how long and how many I attend.

Happy Mardi Gras Everyone!

*(Steve Gleason is a former New Orleans Saints football player who is now battling ALS – Lou Gehrig’s disease)

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14

Exercise and MS

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Content provided by: Tammy Mahan of Healthline

MS affects the communication between the spinal cord and brain in those with the disorder. Electronic signals are sent down long fibers known as axons found in a protective, insulating substance known as myelin. Myelin is thought to be a threat and attacked by the immune system causing it to become damaged when MS is present. There is an inability of the axons to conduct signals properly when the myelin is lost.

The signs and symptoms of multiple sclerosis are similar to other problems making a diagnosis difficult to obtain. The diagnostic process has been standardized by the diagnostic criteria that medical organizations have created. It is particularly effective in the first stages of the disease. When someone has had different episodes of neurological symptoms associated with MS such as numbness or tingling, utilizing clinical data alone might not be enough to diagnose the condition. Analyzing the cerebrospinal fluid and neuroimaging are the most common tools for diagnosis. There is a less attentive response to the optic and sensory nerve stimulation in those with MS because of the demyelination of the pathways.

There are obvious benefits to exercising for healthy individuals; there are also benefits of exercise to those with MS. Benefits include:

●Exercises helps you to manage your weight
●People with more severe MS are aided in maintaining mobility
●Muscles weakness is reduced and mobility maintained thought the toning and strengthening of muscles.
●Some of the symptoms associated with MS can be helped.

MS cannot be cured with a single exercise but it can be used for prevention and to supplement current therapies. The exercise that is chosen depends on the individual. You have to take into account the things that you enjoy and whether you prefer to be alone or with someone when you exercise. Are you going to need help and instruction for an exercise program? These questions will aid you in picking the program of exercise that is right for you and your MS.

●Bowel and bladder problems are aided with pelvic floor exercises
●Depression symptoms improve with aerobics
●Muscle spasms and stiffness are helped by stretching, Thai Chi and Yoga
●Balance is improved through aerobics and walking

Your energy will be renewed as you start to have the natural inner balance restored. MS symptoms such as aches and pains will begin to disappear along with other symptoms associated with the disease. There are several exercises that you can do to assist you with the problems of lack of endurance, ataxia, and weakness in the muscles and loss of coordination and balance so that the problems are effectively aided when you have MS.

It is important that exercises be tailored to the symptoms and begins immediately following the onset in order to get the most benefit from the exercises. Waiting increases the difficulty of overcoming the problem making it vital to start immediately when balance or weakness are the problem. Difficulties can increase when exercises are put off for too long, and the wrong exercises can make the problems worse.

Content provided by: Tammy Mahan of Healthline

36

Small Victories

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Some mornings I wake up and I just can’t do it. I don’t want to battle MS anymore. But somehow I muster up the strength to fight the good fight and begin my day.

I have tremors in my hands, which makes using them exceedingly difficult. At times I’m unable to hold a fork or spoon and transferring myself in and out of my power chair is becoming more challenging due to my lack of strength and mobility in my arms and legs. Most nights I feel like someone borrowed my legs and ran a marathon.

Lately my body aches wake me up before the rest of me wants to be awake. Then I spend the rest of the day exhausted and wanting to just climb back into bed.

I can remember when I was so active. I did so many things. What happened to me? Why has MS consumed so much of my life?

It is so frustrating to have such a hard time even taking a few steps without using a walker or the wall. I feel like a wax dummy fighting a fire that is MS.

The other day after taking a nap I woke up and steadied myself to go to the restroom but my legs didn’t follow. I quickly fell straight to the floor. I gathered myself and began to crawl to my wheelchair. It took me about five minutes to situate myself in my chair and make it to the restroom. But I did it and I was so happy.

Believe it or not, nowadays I consider that a victory because no one saw me crawling on the floor and I was able to hold my business until I made it to the restroom.

I guess when life hands you hard times any positive moment, no matter how small, is welcomed. Even the small victories can be huge.

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38

Aisle Chair

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I was excited from the very moment I was asked to speak on a panel of WEGO Health activists. The other panelists represented cancer, diabetes, and organ transplant patients; I of course represented multiple sclerosis. The conference was to be held in Boston. That’s a seven-hour flight and one layover from my home in New Orleans, Louisiana. This in itself did not pose a problem for me. I’ve traveled by airplane multiple times in the past. I see disabled individuals in the airport all the time.

But this time was different.

Tommy, my husband, wheeled me to the gate. Then both the airline representative and Tommy escorted me down the jet way to the airplane. In the past, I would then stand and wobble to my seat. This time it was deemed necessary for me to use what they call an aisle chair. I could no longer even wobble to my seat!

The aisle chair fits between the rows of the airplane. Can you imagine being wheeled between the two rows of seats? I was worried if I could even fit. They strapped me up like Hannibal Lecter. I had to ride with my arms crossed to ensure I passed. The plane wasn’t even empty as I missed pre-boarding thanks to bladder issues! I was forced to ignore all embarrassment issues. Once I made it to my seat. I was sad of course. I let a silent tear fall. Then pushed my seat back, closed my eyes, and relaxed. After all, what else could I do?

It was very humbling to say the least. It confirmed my disease had progressed. But it cemented that I could handle it.

I continued to move forward anyway and instead of saying my planned speech at the event I told this aisle chair story, which gave the conference attendees a glimpse at how it is to live with MS.

Have you ever seen an aisle chair?

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More WEGO Health 2013 Socialpalooza pics.