Botox Bladder Bliss

The great joy of Bladder Botox

It’s been 5 months since  I received my first round of Botox injections into my bladder. I haven’t written because I’ve been very busy not going to the bathroom! It’s amazing  what one can accomplish while not going to the bathroom 15 times a day. Most notable is the novel I wrote about a woman who went to the big city and didn’t need to map out every bathroom like the subway grid.

Back in 1991 it was made official. A video-urodynamics test confirmed what I knew to be true.  It’s the most dreaded double-edged sword symptom on the MS checklist : retention   (I can’t pee) AND  incontinence (I can’t hold it). Really? Both?  That is truly unfair. Being that I couldn’t go when I did have access to a bathroom, I had to pee all the time and didn’t have the luxury of speculation.

Now what?
The treatment options existed, but were very scary. They told me I would have to  self-catheterize so I could empty completely and then wear pads to deal with the fall out. (Uhg!) I took Ditropan for incontinence and Macrobid to prevent the bladder infections which were more likely using catheters. Needless to say, every part of this was horrifying. But over time I got used to the how-to, and found that having any way to manage this was a huge relief (no pun intended).🙂

For over two decades it was just every day life for me and as we humans repeatedly prove, we adjust and evolve. I got used to the drill. Of course the side effects from the meds, the reliance on having a good stock of catheters and the additional burden in dealing with claims coverage and expenses were very stressful but they were all worth it when compared to the alternative. (ie. staying in the bathroom all day. And there weren’t even smart devices of distraction back then!)

But Wait, What?
I was very intrigued when my neurologist mentioned that there is a (relatively) new way of treating incontinence. That after over two decades of coping with this, there is new hope. The magic is Botox injections into that damn spastic bladder. And I somehow thought Botox only relaxed vanity, but apparently it works on the bladder too.🙂

The procedure wasn’t as bad as I imagined.  (Dude…. 30 shots in my bladder? How’s that gonna work?) But it was just an in-office appointment that lasted 20 minutes. And a few days later it was obvious that things were-a-changing. No revolving door on the bathroom. No urgency. No pads, no meds, no stress, no worries and life is good (er).

After 25 years of this, I never even imagined a life without it. After all, I had been dealing with it since I was 23. I’ve never been an adult who didn’t have these problems so it has jut become a part of my every day.  I coped with it the same way I do with everything MS: Accept what is, validate the injustice and carry on.  But now with a calm bladder, I have hope that there will be many more advances that work for me and my version of MS.

Until then I will keep on coping and carrying on.🙂

 

Got Questions? I’m happy to email, chat and all other digital communiqué.
And check out the NMSS explanation of Botox & MS.

 

 

Everything Old is New Again!

My New Neuro,  New Assistive Device, New Continence and My Old MS ! (oh, they grow up so quickly!)

So, in February I started seeing a new neurologist. I’ve had MS 28 years and was in the care of an MS specialist since I returned to NJ  from Miami in 1996. (How is that 20 years ago??) Anyway. I lean toward separation anxiety so making the change to NJ from NYC took longer than it should have. But I forged ahead with recommendations from my MS peeps on Facebook and made an appt to see  Dr. Ilya Kister at the MS Center ala St. Barnabas in Livingston, NJ.  It turns out that hitting the reset button and having a new perspective on my old MS has been invigorating! (and that’s not a word a person with MS utters often)

Oh Botox, I had no idea how much I’d love you!

I had no idea that Botox did more than smooth out one’s vanity. Turns out that the firming paralysis that puffs-up the lips or fleshes-out forehead wrinkles has all sorts of health benefits including calming an overly enthusiastic bladder.

As long as I’ve had MS (since I was 20) and have had both-ends-of-the-stick on the neurogenic bladder spectrum. Can’t hold it- can’t go.   (So glad match.com didn’t exist in 1988… ain’t no way to casually work that in to a profile!)

Apparently an injection of Botox into the bladder (or 20-30 of them) calms the hyperactivity of said organ. For those of you who are crossing your legs as you read, it wasn’t that bad. For those of you who don’t care what I say about it not being bad, there is a buffet of anesthesia to choose from.🙂

For the first time in 25 years I do not spend most of my day in the bathroom. And I don’t have to create a google map for all bathrooms in a 5 block radius of my global positioning. I can’t begin to tell you how liberating it is. When asked  if I feel normal again, I can safely say no. What was normal for me is exactly what I don’t want to be.

My bladder looks 25 years younger and I’m a new woman.🙂

My foot dropped down, and then got up again

I’ve been tripping on my foot for a crazy long time. I’ve blogged about it a ton (click). I tripped and I’ve fallen in full-frontal denial.  There was always an invisible sidewalk obstacle that got in my way. A few years ago I rejoiced when I learned about a new assistive device that would take falling off my daily-to-do list. Finally, I would be able to leave my house and not be scared that every step would be my last vertical one. But that didn’t turn out to be the case. When I tripped and fell anyway, it felt downright stupid. All the efforts to incorporate these braces into my life were for naught. Sometimes my endless-optimism bites me in the butt.

I had heard about the Bioness L300 electrical-stimulation-thing that sends a signal, that activates a muscle, that picks up your foot. This, unlike the walk-on braces, made foot lifting certain. But somehow I got it in my head that since I have intermittent foot-drop on both of my feet,  it would be overkill to have that type of device. Oh, and then there’s the fact that it’s outrageously expensive, insurance doesn’t cover it, and.. and..and. (insert ongoing list of why it wouldn’t work for me)

But when Dr. Kister mentioned it, I reconsidered. And with my husband’s constant clarity and ability to keep me grounded in potential, (grounded being the operative word!) I figured I go through all the steps to see if it would work for me and that if it does  we will find a way to make it happen. And while we don’t know we’ll afford it, I do know that we will find a way to make it so.  And thus the idea of leaving the house might not be so threatening in the not too distant future.  (Circle back to optimism!)

So in summary:

Botox (✓).

Bioness L300 (✓)
(in theory at least!)

 

A new professional prospective (priceless!)

And everything old is new again~

(de) liberate

every step is (must be) deliberate
an intermittent foot is dropped-
unpredictably

each position of my foot
(think: lead with the heel)

deliberate -heel- step
deliberate – heel- step
deliberate – heel- step

tripping expected
-yet shocking
(stay on familiar floors)

the door saddle- a schoolyard bully
a leg always sticks out and
–brings me down

(is it safe?
is it safe?)

deliberate is demanding
intension is hopeful

intend-heel-step
intend-heel-step
intention heal- heal

5776
I lead with intention

The new phone book’s here! The new phone book’s here!

Amy’s Brain Stampede! These things always have gawkers, so check it out. 😉

MS SoftServe - on the cutting edge

I heard this very amusing podcast or NPR, or maybe it was PRI. Coulda been Fresh Air or This American Life, no..  … oh, I can’t remember. Anyway there was this girl, who’s father always used to sing every time they came upon something new, or the mail was delivered or something like that and it became a family thing. It was just something her dad always said. And then the girl went to college and saw The Jerk and thought, OMG! my dad says that all the time! So she called him to tell him about this movie called The Jerk…   Ok, you know the rest and I can’t remember any more deets as is often the case. So we’ll just stop here. Unless of course you need more quotes from that movie that was released during that very impressionable decade of the 70s….no no no! Stop Amy! We are done here.

Breathe in…

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MS Surveys- Do you participate? 1- not at all, 2-sometimes, 3- once a week…. 5- everyday

I just did a survey for Overcoming Multiple Sclerosis (dot-org). I was reminded that I completed this survey on holistic practices with MS in 2012 and that this is a follow up. While I don’t remember the 2012 survey ( I participate in surveys-#5 at least once a month)  – It didn’t seem unusual that I did it and that I don’t remember it! (my memory fails me -#4 more than once a week) But they kept reminding me and every time I got the email- I thought … I’m too busy to do a survey: a lot of the time. It didn’t come with an incentive ( 1. an amazon gift card, 2. a donation to the charity of your choice) which would make the decision a no brainer. But it is a non-profit organization that is interested to know how I incorporate holistic practices into my day to day with MS. (more than twice a week). And okay… I am motivated by doing something that could help peeps like me who have MS.  It’s a non-profit.org afterall. I’ve founded a non-profit org (once in the past 10 years)- I get it.

I participated in spite of the fact that I resent selecting numbers to describe my variable, unique version of MS (#5 depends on how i feel that day)*   And I hate that by participating in surveys for the greater-good makes it glaringly obvious that I’m getting worse. Sometimes I feel offended by the questions. I’m always looking for that last option that reads #5- Stop asking me these questions or #6 None of your business. Those usually deteriorate into one word expletives by the time I get to question #104 and at that point I’m amusing myself with my real life responses which aren’t fit for any survey, but do reflect how I’m feeling. (depending on the day).

But today was a little different. I didn’t mind  (as much) the labels or generalizations that I was forced to select.

It seems on some days I can find the “feel-good” in how I respond to the question “how often does pain interrupt your normal activity” (#5- rarely) and not so bad about the “how often do you rely on a cane or someone’s arm to feel stable.” (every day).

*My name is Amy and I’m a compulsive-(parenthetical)-hyphenating-italicizer!

Oh Snap! Pics that Prove both Faux & Fearless

Do you ever look at vacation pics and need to remind yourself that your smiles are covering up all of the stressful stuff you were dealing with at the time? Like revisionist history, these pics are “proof” of how happy we were in Paris (pick-pocketed), our trip to Miami (laptop stolen) and on the last day of a Spring Break cruise in 1989 (optic neuritis that made my vision skip like the annoying vertical hold on a 1970s TV set.) Actually, that last one was impossible to forget.

But you know what I’m talking about. Perhaps even as recently as last week during the holidays. The snapshots that pave the way to a memory that proves  “a good time was had by all” even if that’s not the case. But for people with MS, these pics are the false evidence of the dreaded response “but you look so good” when you try to describe how you felt otherwise.…. And while I can’t forget the tainted event that I’m smiling through, I’ve learned to let these snapshots comfort me.

Over the years I got better at hiding how I feel in photos. If you walk around my house there are pics all over the place. I’m really good at looking happy- and while some of these shots are honest to goodness happy- I’ve reconsidered the ones that have a painful back-story.

Like this one:

In 2006, Keith, Madeline and I were in Washington, D.C. for an MS related event. We were walking across the grassy mall to the Smithsonian Air and Space museum when I collapsed against the nearest tree barely able to move. Madeline sat down on the ground next to me and “snap”. The smiles take over. It’s not hard to remember how rough that trip was.  (pic below) I know what you’re thinking. “But I look so good…”

After years of resenting that phrase, I’ve found a way to make it work for me.

Noticing the good when you know it wasn’t so good, has its perks. And the feigned smile can remind me of who I am in spite the rough moments I suppressed to conjure that happy face. And even though it was a forced expression at the time, it serves to remind me that there were some really great parts to that vacation. (Madeline lost her first tooth in D.C and the tooth fairy found us, we went to the National Geographic Museum and took a pic of Mads on a pretend panda cover and the fab restaurant we found in the museum of American History. (We refused to eat McDonalds at the Air and Space Museum!)

If I’m only left to my memory devices- I assure you the challenges would be a lot longer lasting than the happy moments.

So it’s not the “but you look so good” said by people who just don’t get it, but it’s the ability to find and remember the parts there were so good. And if you position yourself just so- you can even pull up the good moments while in the middle of one you don’t want to remember too clearly..

That smile reminds me of the “me” who, in spite of the challenges I endure daily, can always find the moments that prove how I’ve learned to live with my increasing limitations and not get stuck under them. And that brings a smile to my face. (closed mouth, proud expression, accompanied by a nod). Not my standard smile with tons of pearly whites- And honest smile that is empowered by taking control. Something that my life with MS often lacks~

Do you have snapshots to revisit? Feel free to comment and post. I’d love to see em.

But I look so good!

 

 

 

Amy & Leslie 1989 Just off the ship

Don’t look so good here… but it was 1989, I’ve gotten better at sincerely feining!

 

 

vertical hold

exact, but not entirely unlike the TV in my rec room in the late 70s

 

 

 

 

 

 

 

Smash Your Halloween Pumpkin for PWMS!

Challenge Accepted!

If you dumped a bucket of ice for the whole world to see, then contributed to the ALS association you were a part of a worldwide effort. Cos your contribution helped raise $115 million for that organization. That’s $95 million more than was raised last year for this cause.  And even if you didn’t make a direct donation, by spreading the word about this disease to others via social networking you were key to the best charitable effort ever.  Awareness is 90% of giving- because afterall you can’t know what you don’t know and you can’t support an organization for a condition that you didn’t know exists.

Stomp it out, smash it out, waaayyy out.

So let’s spread the word and raise a few dollars for what will be an important part of coping for people who are living with MS (and peeps who care about them).  MS SoftServe is a non-profit .org that will put learning and teaching about MS in the control of all of us who are living with it. It is a customizable learning website will lessen anxiety and empower us on new levels. Check out this link to learn more about MSSoftServe and this one to donate.

Why Halloween is the Perfect time for MS fundraising!

  • Orange is the color of the designated ribbon for MS
  • MS is sooo scary.
  • Stomping on a pumpkin to metaphorically stamp out MS is sooo satisfying!

Cut to the Cut Amy!

Many of us will carve a pumpkin and put it on our porch on  October 31st. But what to do with it on November 1st? Before it hits the trash or the compost heap why not smash it, video tape it and spread the word about this effort. Getting the word out about our effort is so important and a few donations wouldn’t hurt in getting us closer to our goal.

ms-ribbon-2 nevergiveuptattooribbon round pole peacelovehope