Green

These past months have been a roller coaster of emotion and ability. At the beginning of the journey I was so wrapped up in the logistics and red tape that I didn’t spend much time thinking about what it would be like if it worked.

So much of my life has been structured around coping with the everyday and the unsettling fear of what was becoming increasingly clear  My symptoms had advanced and I was (desperately) looking for any possibility that would make moving easier.
From the Bioness electrical stimulation to a surgically inserted Baclofen pump- I was burned by disappointment when it became clear that neither of things would change my life, my ability to move. I was scared to rely on my innate optimism, so when I ventured in to the world of medical marijuana, I embraced the distractions and logistics that kept me from thinking about what it would be like to feel better.

Cash Only 

It’s the No Dogs Allowed hopelessness only Snoopy could understand. People living with MS who are on SSDI and often rely on medicare as health insurance are supposed to find money, to try an MS treatment that may or may not even work for them. That’s a HUGE hurdle that people with MS aren’t even likely to lift one leg over.

There are so many roadblocks and it is easy to get stuck at each of them. Being that medical marijuana isn’t legal federally – the banks don’t affiliate themselves with the dispensaries and thus, the whole business is cash-only. Ouch. That adds insult to (brain) injury.

I was able to traverse this obstacle with an outpouring of support and encouragement from my GoFundMe campaign. With the support of my friends and family (and the kindness of strangers) I was able to proceed to the next step without the financial burden that made it otherwise impossible. I can’t begin to tell you how healing it has been in and of itself. The “pat on the back” and the “we’re pulling for you” energy could have charged all of the iPhones in the country for a year.  But yet,  in the very back of my mind I worried that if it didn’t help, the disappointment would be a very public event.

I made it past the expensive and laborious process of getting a state approved medical marijuana doctor to prescribe the drug, so I could then go to a dispensary that would help me find a strain that worked for my symptoms without unwanted side effects (the ones that are psychotropic in nature!) That learning curve is mind-blowing. It was no easy task,  but over these three months I’ve systematically check-ed off my to do-list of things-to-learn and can now bathe in the symptom relief that has changed my every day.

What I’ve learned is that there is tons more to learn.  It’s a process that most people with MS are very familiar with. That is the unpredictability of what everyday will look like.  Will I be able to lift my leg, walk ten steps, or make it through the day without pain or fatigue? It’s a familiar song with different lyrics for all of us.  Ones that are impossible to memorize.

The biggest lesson of all is that by sticking to the entire process I’m able to do so much more than I would have without Medical Marijuana. My days are still a variation on a theme. But this theme, this song, these lyrics are a in a brand new category of hope and ability. My whole future is bright I have to wear shades. 😉

 

 

Medical Marijuana Moments

Today I went to Greenleaf Compassion and learned the logistics of buying , accessorizing and using medical marijuana. The red tape is over and now I  get to  figure out the best intake method, dosing and how to work it casually into my day without my house smelling like a Grateful Dead concert.

After many months of Dr.appointments, internet research any gathering insights a from peeps who have experience with it- I’m starting this adventure well armed, less overwhelmed and a lot hopeful. 🙂  I’ve had such incredible support on m GoFundMe campain – it has not only freed me from the paralyzingly stress of “how will I pay for this”, but has provided me with a cheering squad of encouragement from people that I love and care about – who clearly care about me! Yay! That is an amazing feeling- if only I could  put that in my pipe and smoke it!

So back to the pot process….

I had a great meeting with the “bud-tenders” and feel really confident about moving ahead.

The dispensary staff was knowledgeable and super friendly. The environment was comfortable and inviting- (unexpected considering the black painted windows) and contrary to many of the not-so-great reviews on the google and yelp.

The strains I’m starting with are Blueberry Kush and Snowdawg. Seriously? Hard to think of this as medicinal with those names. Although they roll off the tongue more easily than Propranolol or Fluoxtine!

Apparently this dispensary only provides the buds- so any other delivery format would have to come from a place that is much further away. To the tune of 40-60 miles away. I’ve decided to start with a dry weed vape as opposed to smoking joints or making oils/edibles/lotions or tinctures; Most of which are very complicated, take 2-3 hours to work and could last over six hours. Being that I don’t know what dosage  is right for me or how this strain will affect me- I decided I’d start with inhaling- which takes minutes to hit the system. I don’t want to smoke (because I hate smoking!) so I decided to try vaping.

I ordered the kit in the pic below from Groupon for the very reasonable $27. That’ll take a couple of days to get here – so in the meantime I’ll try the “one hit” pipe. They made it to look like a cigarette which I truly hate (as afore mentioned) so I altered it with a Sharpie and added a little personalization. So tonight I’m not taking an Ambien for the first time in years . Nighttime is really rough- I have intense spasticity and pain- so I’m super psyched to see if it works.


Once I figure out  the strain that works for me- I will explore other dispensaries  that offer up oils and edibles. But this is where I’m starting.

So here I am doing a pre-bed grind and a  inhalation. Keith’s going to help. Not entirely unlike the days when he was helping me with my injections.

Wish me luck!
P.S. if you’ve had experiences -please share in comments.

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!