3 posts tagged “Living with MS”

Breaking the silence on incontinence

Posted November 21st, 2017 by

A guest blog by member Shannon

 

MS gives me a lot to write about, which is a wonderful coping mechanism when certain aspects of the disease are difficult to talk about. Initially, I wrote about stress and the heavy toll it’s played in my life, and on my body, in the last month. But, as often happens with this disease, I was interrupted. My body said unexpectedly, “No, this is the way we’re gonna do things.”

And just as suddenly, my writing inspiration is changed, because although my temporary season of severe stress was very real and terrible, there is a part of this disease I must expose for the sake of anyone who may suffer in the way I do. Possibly, I’ve waited years too many to share. I’ve written multiple accounts to describe my suffering which have never been read; kept private to spare myself additional pain and embarrassment. I tucked them away, in the same way I attempt to shamefully tuck away this symptom and pretend it isn’t there. Until the next time.

I received an email recently from PatientsLikeMe which prompted me to share the details of likely, the most humiliating part of MS. Incontinence. The word itself is uncomfortable. Many can’t even say it right, and most people aren’t totally sure what it means. Having worked in retirement homes, it’s a familiar word to me, yet even I was unsure of its depth, assuming it meant, “a little bit of urine leakage, typically in the elderly when the bladder simply gets old and tired.” And then there’s my own personal definition.

A few months back when my kids got out of school for the summer, I decided to take advantage of the peaceful morning (not filled with making lunches and carpooling for the first time in nine months) and take my beautiful big-white-fluffy-dog, who we like to call our own personal pet bear, to a local preserve to practice using a mobility harness we bought her. If you know anything about me, you’d know this was overly optimistic and risky from the start as my walking range is quite small and as a rule, I don’t walk our dog ever. I reasoned that I would walk a very short distance to save my strength for the walk back. I hoped that the a harness and mobility handle would assist me enough to make this a successful morning stroll.

On my drive to the preserve, I realized that if I didn’t find a bathroom and attempt to empty my bladder, I might have a predicament at the preserve, since I didn’t know if there were any restrooms there. My preparation seemed flawless, this was going to be a great morning. But, when I arrived at the preserve there were no restrooms in sight.

Although a very flat and easy trail, my legs didn’t take me very far. As soon as I noticed my gait changing, I turned back. A rather predictably-unpredictable symptom of my MS related bladder problems is bladder urgency. The word is self-describing. Urinating suddenly becomes urgent. I may not have a full bladder, yet without warning, it must be emptied. Sometimes this results in a little bit of leakage. Thankfully, I’ve always been able to locate a restroom before my bladder decides to empty prematurely. Until this day.

How did I not know?

Nobody told me that somehow the weakness in my legs, which grew with each step, would also somehow impact my ability to hold my bladder. Duh, “lower extremity weakness” might include those parts below the belt too, not just my legs. Here I was, growing fatigued to the point of limping, trying to speed walk and creating constant tripping hazards – my own feet. For the first time, I felt complete bladder incontinence. The external sphincter outside my bladder, which I had depended on for nearly 40 years, and assumed I had ultimate control over, decided that today was the day it was the boss of me. Alone, no restroom in sight, and, before I could even consider my plight, urine fell out of me like it wasn’t even mine. Like it was being poured from another source. Zero control. I couldn’t stop it, I couldn’t hide it, and I couldn’t even continue walking forward. I instinctively used all the tricks I’ve used in the past to control the situation, but I failed. The more I tried to hold it, the more I realized I must surrender to what is happening. My dog, unaffected by what was happening, stood beautifully still. Unbeknownst to her, she became my shield. From what? I don’t know. Myself maybe. This truth maybe.

When I felt the sensation pass, I pressed forward to get to my car as soon as I could. Tears rolled down my cheeks as I processed what was happening: “I just peed all over myself from the waste down – pants, socks, shoes, and now I can’t even walk quickly to get back to my car, I’m hobbling at a snail’s pace. God, don’t let anyone see me. God, help me get to my car.”

It was a miracle no one was on the trail that day. It was a miracle I wore black leggings instead of shorts. It was a miracle my dog sensed that I needed this makeshift harness more than ever. It’s a miracle that I drag myself out of the basement of my humiliation every day and continue to keep on going, keep on trying.

Clearly, I survived, and this day is behind me, but the issue of incontinence isn’t. I live every day this way, on the border of “Can I make it? Should I leave the house now or wait ten minutes?” And always, my MS superpowers are paying attention to where each and every bathroom is. Leakage, well they make something for that. Complete emptying in public, I’ve never had to consider what those options might be. And for the curious, yes, I’ve had some very close calls with bowel movements as well.

There are many solutions offered to those of us who live this way. I’ve found some work better than others. I thought since the experts form helpful lists, I myself as a self-titled expert, would do the same.

These are some tricks that work for me:

  1. Unfortunately, restricting fluid intake is necessary at times since obviously any fluid intake causes additional urination. Which is the exact opposite of what we want to do if we are fighting constipation, but sometimes we have to do what we have to do.
  2. A nurse once told me, “Sip, sip, sip equals pee, pee, pee. “ So I almost never sip water, rather, to hydrate, I chug a whole glass at once, and then typically, empty my bladder all at once.
  3. Wear black and dark colors, it hides leakage well.
  4. Know where public restrooms are everywhere you are spending your time. I cannot emphasize this enough. And know which bathrooms are the most public friendly with the least amount of walking.
  5. If going somewhere early, reduce caffeine intake as it is a diuretic. For me, this means if I have to leave the house first thing in the morning, I limit myself to half a cup of coffee.
  6. Various movements help buy me minutes or seconds to get to the restroom or while waiting for it to become available. Pushing on my bladder slightly and doing a subtle potty dance of bending, lifting one leg up on a bench etc. helps distract my brain from the urgency.
  7. Since I also suffer from bladder hesitation, going before I leave the house isn’t always an option. Sometimes I just can’t go. I always consider how long it will be until I can get to the next bathroom. And when my bladder is playing it’s hesitancy game, it is very shy, needs complete privacy, and gets even more agitated and hesitant with heat, so I make sure to keep those things in mind too and plan accordingly.
  8. Limit drinking any fluids in the car. Just don’t do it. Hydrate plenty before or wait until after.
  9. Don’t assume because you’ve had multiple children this is the cause of leakage. Although I have three children, my leakage is very different than simply a tired, stretched out, child bearing bladder. I never leak when I cough, sneeze, laugh or squat. Neither can I push on my bladder to initiate flow or complete emptying (incomplete emptying is another bladder symptom I’ve dealt with in the past).
  10. Tell a few, understanding people close to you, so that when you say, “I gotta pee”, they stop what they’re doing and practically form a military procession to remove any obstacles and get you to the nearest toilet, or at least, they just get out of the way.

This symptom can be very isolating. I don’t know another human being who can share in this experience with me. And that’s my hope in sharing with all of you. Even if it feels that way, we aren’t alone, and we need to offer our experiences and our tips to a community struggling to feel less alone in our disease.

Can you relate? PatientsLikeMe members are sharing how they cope with incontinence in the MS forum. Check out what they’re saying and chime in with your own tips.

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“MS cannot stop you from living your life and following your dreams” – an interview with patient advocate and PatientsLikeMe member Starla Espinoza

Posted February 7th, 2014 by

Multiple Sclerosis Awareness Month is fast approaching in March, but we just couldn’t wait until then to share our recent interview with patient advocate and PatientsLikeMe member Starla Espinoza, also known as baebae. On top of being a PatientsLikeMe member since 2007, tracking her health and sharing experiences with the community, she’s also a blogger and big advocate for raising MS awareness all year round. Check out what she had to say about her supportive family, her passion for MS awareness and the simple pleasure of riding a motorcycle.

 

 

 

Can you remember what your first signs or symptoms were? And what was your diagnosis experience like?  

My first significant symptom was a buzzing sensation in my left hip. I always describe it as “a microscopic bee or hummingbird” trapped in my hip that is desperately trying to escape. It was the strangest feeling, especially since I didn’t know what was going on. My diagnosis took almost a year from the time that the buzzing in my hip started. I had more symptoms like numbness from the waist down, a tight gripping sensation around my midsection (MS hug), and dizziness for 6 weeks, just to name a few. Within a 6 month time frame, I underwent tons of testing, including blood tests, spinal taps, MRI’s of my brain and spinal cord, a CT scan, and an x-ray of my spine. I was eventually told that I had Transverse Myelitis. On December 13, 2007, I was finally diagnosed with MS. My neurologist showed me my latest MRI scans and sent me home with a bag of information and a prescription for my MS treatment to be started immediately. I cried as soon as I left his office. Within 3 minutes I heard God’s voice saying, “Don’t cry, I will never leave you nor forsake you. So do not let your heart be troubled, nor let it be afraid.”

As a mom with three daughters, how has MS impacted your family life?

As a mom of 3 girls, my MS diagnosis brought us all closer than we already were. Their names are Daesia, Dayna, and Aliya and they were only 12, 7 and 6 when MS presented itself. The girls saw me at my worst before we knew what was wrong with me. They know how to support my condition and me. My first treatment involved daily shots, and they even participated in the beginning by helping their dad care for me and give me my shots. They, along with my husband, are very active in my efforts to raise money for the MS Society every year. We bake goodies for our bake sale and we have all pounded the pavement together to solicit donations from local merchants for prizes to include in our annual raffle drawing. My girls and my husband are true MS Warriors and advocates for MS. Makes me teary-eyed just thinking about all we have done together for the past 6 years to show people that MS cannot stop you from living your life and following your dreams. My girls are now 18, 13 and 12, and they want to do everything that they can to fight MS. We are all in this together.

You mention your religious faith and passionate activism to raise awareness for MS. Can you tell us a little about that?

My story proves that God can use me. You see, God has been by my side since the beginning of my MS journey and even longer than that. He showed me His purpose for me in this MS journey. I discovered that He could use me to raise awareness for a condition that a lot of people were unaware of. A passion was sparked inside of me by God to take ownership of this cross that I had to bear, known as MS. I developed the strongest desire to tell everyone everything that I knew about MS. That even though I have MS, it does not have me. I wanted to use my voice in the most effective way possible, and He made me a patient advocate about 3 years ago. I often get the opportunity to speak at events and dinners, radio and news interviews, and now an interview here on PatientsLikeMe.  All I can say is, wow, 🙂 I’m really doing this.

It looks like you use your Multiple Sclerosis Rating Scale, and track you symptoms and treatments a lot on your PatientsLikeMe profile. What inspires you to share and donate so much of your health data with the community?

Sharing my health information with the community is part of being an advocate. If I am willing to be transparent, hopefully others will be inspired to do the same. Together, we are soldiers in this battle against MS. Sharing helps me track important health information and improve research about this disease. It’s very easy for me to do, and I can even do it from my phone. In turn, it benefits us with new treatments and ways to deal with MS. I get excited just thinking about it. Tears again, oh my.

For those who might not follow your blogs yet, can you share what they’re all about?  

My oldest daughter Daesia gets credit for the creation of my MS blog. She was 12 when I was diagnosed and after 2 years, she started to realize that most of the people she encountered had never heard of MS. Her peers and teachers had no idea what it was. She wanted me to blog about how MS personally affects me. I was already a blogger so it was a no brainer. Daesia named my blog, Did I Mention My MS. What a genius idea for a 14 year old! In my MS blog, I share personal details about my MS journey. I even shared a post that Daesia wrote for a school paper.  Wow, it sure does give me a lot of insight about how she viewed MS in her young mind. My blog posts include information about my MS treatments, medications that I take to combat the side effects of MS, what I’m doing in my community to raise funds and awareness, personal struggles with doctors and how I fought for my rights at work as someone with an “unseen” disability. It’s all about the good, the bad and even the ugly issues that I have personally dealt with as an MS patient.

What’s it been like to connect to others living with MS on PatientsLikeMe?

The first time I heard about PatientsLikeMe, I thought, “What a great idea!”  Connecting with others who live with MS on PatientsLikeMe has been super beneficial in so many ways. MS patients are sooo resilient because after all, MS is not limited to one area of our bodies. It affects us from head to toe, physically and emotionally. We draw so much strength from each other, and PatientsLikeMe gives us the platform to share how we cope with everything from new treatments, clinical trials and social security disability benefits, to name a few of the topics discussed in our forums. I have even established a relationship with a patient who lives in my area via PatientsLikeMe, and she has even joined my walk MS team, The MS Warriors. I love the fact that PatientsLikeMe brings all kinds of patients together. I have shared the PatientsLikeMe website with so many people, including a friend fighting bipolar disorder and even my husband, who struggles with chronic pain.

Finally, we see that you like to ride motorcycles! Awesome! Tell us about your travels on the open road.

Aww, the joy of riding a motorcycle. I ride with my husband and it is such an exhilarating, invigorating and therapeutic experience, all at the same time!  We live in Northern Nevada (Reno/Sparks), and with the mountains in the background, we discover some of the most beautiful and picturesque scenery on the “open” road. You have no fear; it’s like flying like an eagle (the symbol often seen on motorcycle clothing and gear). I started out riding with my husband as a passenger until he bought me my own small bike for my birthday. It was only 550 cc’s, and he taught me how to ride it. Before I knew it I was following him on his 1850 cc Harley Davidson Electraglide Classic around town. I used to love it when we would go to downtown Reno. You see so much more when you are on a motorcycle. After 3 years, I sold my bike, and now I am a passenger again on my husband’s big (custom painted) Harley Davidson Electraglide Classic. We even have matching helmets to match our bike. Not meaning to brag, but a motorcycle enthusiast such as myself cannot talk about riding motorcycles w/o specific details. This gives the whole experience to non-riders and understanding to riders. Sometimes we ride in groups and take trips to Lake Tahoe, my favorite place. Surrounded by tall pine trees, cabin homes and casinos with the lake in the background makes the drive such a vibrantly wonderful experience. Every year in Reno, NV there is an event called Street Vibrations. It’s all about motorcycle enthusiasts. People travel from all over the country, sometimes on their bikes alone or in a pack with their club. It is a loud 3-day event, and we always look forward to it every year.