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.

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.

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!

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

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