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. ūüôā  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). ūüôā

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. ūüôā

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. ūüôā

 

Got Questions? I’m happy to email, chat and all other digital communiqu√©.
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. ūüôā

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. ūüôā

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 (‚úď).

Bioness L300 (‚úď)
(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
‚Äďbrings 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.
ūüėČ

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 ‚Äúproof‚ÄĚ 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 ¬†‚Äúa good time was had by all‚ÄĚ even if that‚Äôs not the case. But for people with MS, these pics are the false evidence¬†of the dreaded response ‚Äúbut you look so good‚ÄĚ when you try to describe how you felt¬†otherwise.‚Ķ. And while I can‚Äôt forget the tainted event that I’m smiling through, I‚Äôve 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. ‚ÄúBut I look so good‚Ķ‚ÄĚ

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‚Äôs not the ‚Äúbut you look so good‚ÄĚ said by people who just don’t get it, but it‚Äôs 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 ‚Äúme‚ÄĚ who, in spite of the challenges I endure daily, can always find the moments that prove how I‚Äôve 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

Can Amy Come Out to Play?

MS~LOL: Multiple Sclerosis a Life Of Learning

hmmm… not so much

It’s so odd when the earth offers so little stability. Gravity is something that most people appreciate but take for granted. Unless you are watching Chris Hadfield performing Space Oddity on the International Space Station (not watching it on the space station, watching it on YouTube ). But for some of us standing on the ground and does not feel grounded; for some of us, the gravitational pull is enemy # 1 and for us, just leaving the house can be really frightening. If you’ve never dealt with standing as an extreme-sport you can’t begin to imagine how scary it is. Some people living with MS know what I’m talking about. -And just like so many realities of life with Multiple Sclerosis, there’s no way to get it, unless you get it. And I’ve got(ten) it for 26+ years to date. But my hate-full relationship with gravity didn’t start until a few years ago.

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Can Amy Come Out to Play?

hmmm‚Ķ not so much…

It’s so odd when the earth offers so little stability. Gravity is something that most people appreciate but¬†take for granted. (Unless you¬†are watching Chris Hadfield performing Space Oddity on the International Space Station ‚Äďnot watching it¬†on the space station, watching¬†it on¬†YouTube. ) But¬†for some of us, standing on the ground does not¬†feel grounded.¬†For some of us, the gravitational pull is enemy #¬†1 and for us just leaving the house can be really¬†frightening. If you’ve never dealt with standing as an extreme-sport you can’t begin to imagine how scary it is.¬†Some people living with MS know what I’m talking about. And just like so many realities of life with Multiple Sclerosis, there‚Äôs no way to get it, unless you get it. And I’ve got(ten) it for 26+ years to date. But my hate-full relationship with gravity didn’t start until a few years ago.

Chris Hadfield Space OddityI was commuting to NYU and tripping a lot. It was happening as a result of intermittent foot-drop and I cope(d) by cozying up with my good friend denial for as long as possible, in spite of what retrospectively seems glaringly obvious. Kissing the city sidewalk and the inability to find the horizon line was my repeat nemesis. Since that time, I went on SSDI (disability- I prefer to think of as this-ability) which made it very easy to stay in my pajamas and avoid leaving the house. An emotional stop sign now blocked all exits from my home. Not a warning to proceed with caution or the graphic using wiggly lines that suggest an issue ahead; No, this is a permanent STOP sign tangled-up with the scars on my brain that leaves little room for misinterpretation.

Full stop.

I spend a lot of time thinking about my disinterest in leaving the house. (Granted, I spend a lot of time thinking about what I’m feeling and thinking about why I‚Äôm thinking what I think. I‚Äôm all meta, all the time.) It makes sense that I’m apprehensive about stepping out the front door. The energy required to consider¬†every single step while I’m trying to make sure that I don‚Äôt make¬†the wrong move¬†and end up on the ground, is often more than I can handle.

Over the years I’ve adjusted to the need for assistive devices. I carry a walking stick and at times I wear foot braces. But neither¬†are the¬†vertical guarantee. When I first got them, these “accessories” seemed like superheroes to me. They made me believe that they would stop gravity from its overzealous evil bidding. But it didn’t take long for their¬†kryptonite to be exposed and with it my physical and emotional weaknesses.

‚ÄĘ ‚ÄĘ ‚ÄĘ

On Monday I went to a meeting to plan¬†the High Holiday Family Service (B’yachad) at a Temple member‚Äôs house. It‚Äôs one of those evenings that I know if I ¬†get there, I will really enjoy it. This is an incredible group (mostly women‚Ķ just saying!) and I usually leave with the feeling I am part of something bigger than myself. But in spite of that knowledge, I fought myself all day long. To go or not to go. My everyday question.

Fear is usually greater than the sum of its parts and so I broke it down, planning every literal step of the way. I’d been to this house. I knew the hurdles (steps without a hand-rail, not well lit) and so I set up preventative measures to reduce the risk of falling on my face. But even with these cautionary measures, I was still reluctant to go.

I called an ‚Äúassistive friend‚ÄĚ to give me a ride there and a shoulder to lean-on. As we¬†ascended the stairs, it felt like Masada from the base camp,¬†albeit only three steps.¬†(I should mention here that I climbed Masada twice and even with MS it was less intimidating.) But I made it. ¬†(yay me)

Hard to imagine I climbed Masada twice! 1985 (pre MS) and 2001 (with MS)

Even Masada has a banister! (albeit partial)

Unfortunately a¬†three step descent¬†was not so successful. A combination of unforeseeable¬†circumstances played out and that¬†last step was a¬†doozy. I flailed for what seemed like an eternity and when I finally touched down, I hit¬†the same spot on my knee that had been pre-seasoned by last week‚Äôs trip. Every muscle tightened¬†as I recoiled in preparation for the inevitable¬†impact. I was keenly aware that the flailing is more painful than the skinned knee and the feeling of out-of-control continues to sting. ¬†I mean… geez! I pre-planned everything!

Where was I….she says rhetorically to her attention deficit. Oh yeah.

It was suddenly clear. Not because ¬†the fear of leaving my house had been nagging at me for the last couple of years. Nor was it because this fall forced¬†me to acknowledge that the changes (I hate the word “progression”. It makes it all seem predetermined) of my disease¬†are ¬†easily seen. I clearly¬†need to upgrade to “Assistive Device 2.0” and I’m so scared that it‚Äôs not compatible with Amy OS8.

So I’ll reboot, throw out my denial- based -preferences and Google a Quad. (Can I still call it a stick? I hate the word cane!) And will just have to see how it goes.

So please ask me to coffee! If I’m brave enough I will meet you¬†with the four-point-stick in hand, and for once be¬†confident that the sound of my current assistive device falling to the ground will not be heard. My 2.0 will be able to stand on its own four feet. And thus, allow me to master my two¬†and hopefully my relationship with gravity will be renewed. (C‚Äômon Amy, give gravity another chance…. you may turn out to be your BFFs yet again.)