Dom asked me back with two other lovely MS-having humans to discuss bladder and bowel issues in MS. Did we forget to mention UTIs? Yes! Role of diet? Yes! But if you want some candid talk about what MS can do to your excretory functions *and* what you can do about it, this is well worth your time.
In honor of World MS Day I’ve decided to send this report to a broader audience. I realize it’s been a while since I wrote one of these, and I’m sorry. There have been tiny victories and defeats over the last few years, but for the most part my health remains low grade shitty, hardly worthy of an email. Or blog.
My weeks before being stuck at home had a different rhythm, and self care was easier. On good mornings now, I stretch, get out of bed, and then head to the living room for 15 – 20 minutes of Pilates on my own before a sensible breakfast. It is equally (read: MORE) likely that I will spend 30 minutes scrolling on my phone before rolling out of bed, ignoring the yoga mat, plopping my tight glutes on a barstool, and ploughing through two blueberry scones. It takes such effort to be good, to take care of myself. And, no matter how much I remind myself of the wonders a small bout of morning exercise does for my body and psyche, it is hard as hell to make it happen. My wonderful Pilates instructor Jeneva spends a half hour Facetiming with me on the weekend, so, if nothing else, I have that.
I feel like I’m falling more these days. Maybe due to reduced core strength. Maybe because I’m not paying enough attention. My elbows are covered in little pink circles where I’ve caught myself on a wall. The lightest of skinnings. Post-fall my first thought used to be a quick calculation of when my next massage would be. Under current circumstances those calculations are pointless. I try to be happy for those who can finally get their hair cut and colored again*, but I won’t be celebrating until massage studios are open. Massage never fixes things completely; it sure makes them feel better sooner, though.
I should also acknowledge that increased falls with Neal home are a mixed bag. On one hand, he’s always here to help me up. On the other hand, HE’S ALWAYS HERE. Sometimes a girl just wants to flop around awkwardly in private.
I was due for bladder Botox in April, but rules regarding what procedures are essential make it so that all my urologist can provide is an email saying “I am not quite sure when we are opening up to do Botox, but I have a list of people to call and will add you so we can get you scheduled ASAP.” So I try to curb my liquid intake and celebrate each trip to the bathroom as a chance to get in more steps.
Oh speaking of steps–thanks again for your Walk MS donations! I haven’t managed a full mile since then, but I try to do a half mile most days. It was pretty damn inspiring to realize I could do it. So hurrah for that.
What else? Oh, I had a telehealth visit with my neurologist, Dr. A, whose phone manner is much better than her bedside one. (I still haven’t sorted out the paperwork with Johns Hopkins, which is annoying but not worth my energy presently.) The chronic back pain that she shrugged off last fall is now worthy of her concern, so I take 100mg of Gabapentin 3 times a day. And it helps some! Fish oil and Biotin are back in the supplement pool at higher doses than before. (Sure, why not?) She also sent me for a brain and cervical spine MRI. No results yet, but I’ll keep you posted. My biannual bloodwork (required to keep me on Tysabri) will be completed next week when I go to Georgetown for neck Botox. Yes, neck Botox is fine but bladder isn’t. Ours not to reason why.
At work we have a Slack channel (Slack is like Facebook for work) called #covidsilverlinings, and here are mine:
- No massages means no paying for massages, nor paying to be transported to and fro. And while I will strip down and get on that table THE MOMENT it’s possible, it’s good to know that my body does not shut down without that care.
- Pilates at home is effective! And, again, doesn’t require transport. I prefer the apparatuses (apparati?), but perhaps I can do a combo of home and studio work moving forward.
- Being home all the time has taught me that I’m a decent walker when I take smaller steps and use my rollator. Bonus: the rollator is handy for transporting snacks from room to room.
That’s all the news from DC. All my news, at least. Thanks for your support. I am so lucky to have you all!
P.S. Mail has been inconsistent of late, so I assume my MS Day presents are stuck at a post office somewhere on the east coast. Looking forward to their arrival!
For those of you tuning in late, here are parts one and two.
During my first two years self-catherizing, my urologist tweaked my medications multiple times to further reduce the frequency of my urination–and to eliminate my nocturia, which is a fancy way of saying “the need to get up in the middle of the night to pee.” Vesicare was rejected because it made me so thirsty I drank enough to offset any positive effects it might have. Oxybutynin was replaced with a higher dosage of Doxazosin, which was eventually revealed to be the cause of my leakiness. So long, Doxazosin! Then Myrbetriq came along and put the rest to shame. Effective with no side effects (for me, at least), it was a godsend. A very expensive godsend ($60/month copay if memory serves) but a godsend nonetheless.
Still, I almost never peed the mere six times a day that self-catherization initially promised. It was time to try something new. In the summer of 2015, my neurologist suggested a urogynocologist with a compulsive nervous laugh and a penchant for quizzing me on Shakespeare while examining my ladyparts. What she lacked in bedside manner, she made up for in action: it was time for Botox at last!
My first appointment was delayed due to insurance issues and then a UTI (something that’s no longer an issue since my doctors now prescribe a week of antibiotics prior to the procedure), but on January 19, 2016 I happily wrote the following to my family:
After months of anticipation I received my first dose of bladder Botox today. As I (over)shared on Facebook, my nurse’s running narration of the prep included her referring to my urethrea, which did not make me feel I was in the best hands. Still, she did her work well enough (filling me with numbing liquid and gel) that the needles didn’t hurt much going in, even in the inexperienced hands of a urogyno fellow. I continue to find the office lacking in efficiency and am tiring of having to discuss Shakespeare with my legs akimbo. If this works, though, it will all be worth it.
It was totally worth it! With Botox working with MS to almost entirely immobilize my bladder muscles, I reached the magical six pees a day goal and even slept through the night. The effects usually last nine to twelve months. I initially received Botox again in early 2017 and then was scheduled for a second treatment the following September when I ran into prior authorization issues. Not familiar with prior authorization? It’s a fun thing insurance companies do where they receive a prescription from your doctor and then say, “Are you sure? Please fill out additional paperwork to prove it.” Because I also receive Botox injections in my neck, it takes some administrative finesse to juggle my authorizations since (also fun) you cannot have two prior authorizations for the same medication simultaneously. It took 40+ calls to my doctors, the pharmacy, and the drug company to straighten everything out. After a lot of stress and even more tears, I finally got my Botox in February of this year.
I also got a new urologist, one who laughs at appropriate times and has a helpful, responsive staff. She administered my latest set of Botox injections this week. Curious about the procedure itself? Lucky for you I took notes.
- First I stripped from the waist down (in prior visits, a hospital gown was involved) and lay on a table with my knees up (no stirrups, which felt more dignified than previous procedures).
- The nurse swabbed my urethra with iodine and then used a large, needleless syringe to inject my bladder with lidocaine jelly.
- A catheter was then inserted to transfer lidocaine liquid into the bladder.
- Lidocaine is a numbing agent, by the way, and it takes a while to do its stuff. To ensure it covered all of my bladder walls, I lay on my back for ten minutes and on each side for five. (This was much better than being told to “move your hips around,” which is what the urethrea nurse suggested.)
- I received another swabbing and then another squirt of lidocaine jelly for good measure.
- A new catheter was used to empty my bladder into a big cylinder,
- Then it was time for the main event. An itty bitty lighted scope was inserted through my urethra, et voila! The inside of my bladder appeared on a screen to my left. Next thing I knew, I saw the needle within the scope puncturing my bladder walls, leaving behind a bright red trail of blood each time it exited. The sensation is tough to describe . . . it’s a sort of pressure followed by a light sting. After a few minutes of discomfort, the twenty injections were done. I was given an antibiotic and sent on my merry way.