I spent the entire weekend documenting everything I’ve tried for my MS. Thank God for iCal, my Amazon order history and the “purchase” file I keep in my email app. I’m not surprised by the vast majority of medicines, therapies and equipment as much as I’m shocked at what I forgot. For example I literally had no memory of taking an expensive medication as well as many treatments until stumbling upon them in my digital calendar.

At this point I need to stop, post and hit publish. Over the next few weeks I’ll be describing what’s been working for me these last two years. In the meantime if you have a specific question about what I’ve tried at any point feel free to ask in the comment section or message me.

And no, I didn’t have the courage to tally up how much this has cost me out of pocket.

One thing at a time dear readers. One thing at a time.

The following tables indicate what worked, stopped workin or never really worked at all since my diagnosis in 2009. Please note, anything in yellow worked, just not all the time.  Or it worked at first but didn’t give me enough long term improvements to justify continuing to pay for them. Some things started out feeling very “green” and formidable only for me to later realize that it was simply keeping me upright but not moving me forward.

Don’t get me wrong, upright is awesome. But never moving forward makes me try something new eventually. So yellow below isn’t necessarily a bad thing. In fact some of the yellow cells below are items I hope to return to and try again. But for now, it’s been my experience, that they aren’t as good as the green cells below.

The following tables indicate how I stumbled upon the medications, therapies or pieces of equipment in the first place. Purple, like yellow above, is also complicated. Just because my physician assistant didn’t tell me about something doesn’t mean she wasn’t completely on board and enthusiastic about therapies once I shared them with her.

This is to illustrate how much research, trial and error, personal work, and expense is involved when diagnosed with a chronic condition.

Updated for accuracy on 3/16/20. Featured image by I.am._nah

I mentioned recently that it’s hard for me to write about whatever I’m not directly experiencing or feeling.  I would love to write about the therapies I’m currently benefitting from but I can’t stop thinking about this administration’s response to the coronavirus.

Like how in God’s name can someone spread incorrect public health information while reading a prepared and thoroughly vetted speech from a telepromptor?

Or how Trump and Pence are continuing to shake hands…At the COVID-19 National Emergency announcement…In front of public health officials…While discussing how to stop the spread of a pandemic disease…While millions of Americans (who are being told to follow social distancing protocols) are watching!

What the fuck?

(Featured Image by Frank McKenna)

Are we there yet?

I personally thought our Asshole in Chief hit bottom the day he announced his candidacy back in 2015.

Perhaps his bottom is coming since he’s officially 2 degrees of separation from the Coronavirus.  I sure hope the dude that placed the American flag on the stage isn’t the infected person that has forced so many Republicans to self quarantine.

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Tasos Katopodis/Getty Images

Oh wait, I forgot. Only in-firmed, elderly folks are at risk, not the healthiest President of all time who happens to be 73. And is overweight. And is probably malnourished from a lifetime of eating fast food. I’m sure he’ll be fine.

Not to be a bitch but I take a drug that’s been keeping my MS at bay for two years.  Since starting I not only have inactive lesions on my brain but I’m also FINALLY seeing motor improvements. To achieve this, however, I have to deplete T and B Cells in my immune system twice a year. Not something you do when a novel Coronavirus is spreading across the country. So to avoid dying from a novel virus I must stop receiving the drug that’s helping me immensly. Gee, I wonder how that will work out for me?

So again, I’m asking. Has he hit finally rock bottom? Has sabotaging our response to pandemics bitten us in the ass? Can we agree that having a narcissist in charge is a bad idea? Can we finally admit that the chick with the email problem would’ve worried more about average Americans, and less about herself?

Hate to say we told you so. But we did.

(Featured image by Sara Kurfeß)

Time To Write Again. I Think.

March 3, 2020

Recently I had the pleasure of enjoying dinner with dear friends. We started talking about my writing and I was reminded that I keep ignoring said friends when they encourage me to write again.

I used to post semi-regularly here. I wrote another blog called Enter The Circle from 2006 – 2011), wrote a monthly newsletter years ago that I emailed to subscribers and even self-published a book with friends almost a decade ago. But once social media exploded, 140 characters replaced posts and exchanging information was replaced with Facebook feuds and Twitter wars I decided, “To hell with this, I don’t care enough to participate.”

Another problem I have (or perhaps a skill I possess, who knows) is that I can only write about whatever’s on my mind at the time. Period. Zip.

This is why I don’t write fiction.

This is why if I’m annoyed with Donald Trump, I can’t write about healthy recipe alternatives for chocolate cake or why I like using my Theragun.

This is why if I’m frantically searching for ways to improve my foot drop and walk better, I can’t write about why I’m constantly annoyed by Donald Trump.

I can only write about what I’m currently thinking or feeling. Writing for me is a way of purify my brain by graphically purging the thoughts I’ve been over-ingesting. Basically I’m a bulimic when it comes to writing. A binge-purge wordsmith, if you will. 

So after years of binging countless ideas, inklings and impressions, I’m feeling the need to get back in front of the keyboard to get these round the clock ruminations out of my system. Although I’m nervous about opening myself up to criticism and commentary, I’m relieved that written comments allow me the opportunity to think before I reply. Sadly, not everyone online takes advantage of this, which makes me even more nervous.

Because I have decent information to share about living with a chronic condition (I have MS), the art of communication (I’m a speech therapist), body awareness (I’m a yoga teacher), and life in general (I’m a mother, friend, daughter, wife, sister, human being, etc), I’m going to listen to my friends, find my courage, and start writing again.

Therefore, if I offend, misinform or are simply unaware, please let me know so I can learn and grow. Feel free to comment, share a link or recommend a social media account to follow. I have no issue having a difficult yet enlightened conversation with anyone.

But a confrontation disguised as an exchange? No way.

Not interested.

Which means if you simply don’t like my thoughts and want to fight with me about them, don’t waste your time because when it comes to strangers and anonymous postings, I’m a lot like Tim…

Screen Shot 2020-03-02 at 9.14.56 AM

(This is the closest I got to crediting the illustrator above. I hope it’s correct. However the featured image and other photos by Hannah Grace at the top of my post can be found here.)

kevin-grieve-565249-unsplash

I think all the ladies in this photo look fabulous.

But in my mind the selfie ladies on the right are talking about angles, lighting, and product placement. Whereas the woman on the left.  For her I imagine a thought bubble floating above her head that states, “Fuck yeah I look good!”

She doesn’t need likes or retweets to convince her.  She convinced herself years ago.

Be like the lady on the left.

(Photo via Unsplash by Kevin Grieve)

 

Dear Conservative Christians,

My daughter Jarin decided to do a stop-motion animation project for her experimental film class.  You should see it. It’s called the Georgia Princess and it’s timely AF!

The fact that 40+ years after Roe V Wade she has to even think about this disturbs me.

She’s done everything right. She uses birth control that you don’t have to remember to take, only drinks when around people she trusts, pays her taxes, works while going to school full-time and studies hard. As she approaches 21 and prepares to graduate later this year, she’s coming into her womanhood.  She’s daring to dream big dreams. Live an authentic life. Participate in really, good, self-care. And bust her ass to get where she wants to go career-wise.

More importantly she’s finally starting to understand that life isn’t about perfection or avoiding stress and problems. It’s about becoming resilient enough to bounce back from the adversity that is bound to show up.  In other words she’s being less judgmental and more compassionate with herself, something all young women must learn how to do as they set out to conquer their dreams.

She has also been a kid that, SINCE MIDDLE SCHOOL, has told me she does not want children. She wants to be a DINK (Double Income No Kids).

When she hears a baby wailing in Target she whispers in my ear, “Dink, dink, dink, dink, dink”.

On our way to the airport a few years ago she said from the back seat, “Just think how much nicer your hotel room would be and the comfort you could’ve enjoyed sitting in first class if you guys didn’t have us,” while pointing to her sister.

I really like this guy, but he’s pretty sure he wants a family so I think I need to end it before it gets more serious,” is a sentence she’s uttered on occasion.

My response has always been, “Please be upfront with whomever you date. Make sure you explore what it might mean to you to be a step-mom in case you fall in love with a person who’s divorced. Please know that you don’t have to give birth to be a phenomenal matriarch to someone at work, through community service, or inside your extended group of family and friends. But please don’t have kids unless you really want them. It not only wouldn’t be fair to you, it would be amazingly unfair to your partner and children.” 

I’ve always been pro-choice which has never felt anti-life to me. My pro-choice stance is about being pro-quality of life for not only the mother but also the potential child. I’m also a science nerd that understands the first law of thermodynamics, also known as Law of Conservation of Energy. This law states that energy can neither be created nor destroyed; energy can only be transferred or changed from one form to another.” ~ Live Science

Because I simply feel better following the laws of science than the laws of a 2000 year-old-man-made-ideology I believe in the following. I figure after an abortion the energy, life-force, prana, bio-electrical voltage, soul, whatever you want to call it – doesn’t get destroyed.  It simply goes back into the ether, the collective, or maybe if it’s a soul, the queue. Perhaps it just gets back in line to be popped into another zygote that will be implanted inside the womb of a happy, healthy, ready-to-take-on-the-challenge-of-motherhood, legal, adult female who willingly made the choice to get pregnant while conscious and by someone not threatening to ruin her career or related to.

Call my crazy, but if I’m a soul looking for a bodily, home, I’m picking the jackpot womb. Shouldn’t all souls have that opportunity?

So enjoy her short film.

Honestly, I can’t wait to see where she ends up.  A stop motion animation career at a powerhouse like Laika in Portland?  A phenomenal pre-production gig in LA?  Maybe she’ll do line production here in the DC / Baltimore area? I think she’s going to have a great career no matter where she lands. But unlike her male contemporaries, she may soon live in a country where, by no fault of her own, a pregnancy could completely derail her dreams and everything she’s worked towards.

I’m so sick and tired of all you white, Christian men trying to control our lives and I’ll be super pissed if you derail my kid’s future. But luckily for Jarin I hear that Canada has a thriving television and film production industry.

Careful what you wish for assholes!

Fondly,

A pro-choice, pro-quality-of-life, progessive who’s tired of pro-birth Conservatives disguising themselves as pro-life Christians. 

A True Pro-Life Conservative Christian (PLCC) would 

  • Support gay marriage as it clearly answers their pro-life adoption prayers  
  • Fight for birth control and fact-based sex education as those decrease unintentional pregnancies
  • Be okay when medical, therapeutic abortions decided upon between a woman and her doctor occur since they love small government
  • Demand only science based evidence because God created scientists and data analytics for a reason
  • Welcome universal healthcare, food stamps, social services, head start education and top notch foster care because the real important work happens AFTER a baby is delivered not before
  • Demand rape prevention and education as well as proper punishments for offenders to keep everyone safer 
  • Be completely ok with women “Playing God” since EVERYONE plays God. 
    • From taking penicillin, to having a heart-lung transplant, to cosmetic procedures and in-vitro fertilization, or wearing a fucking seat-belt. We create and extend life constantly. If you’re truly against Playing God you probably should cancel your upcoming Botox and Artificial Insemination appointments 
  • Fiercely protect abused girls, tweens and teens from their creepy fathers, uncles, cousins & family friends, instead of taking away their educational opportunities and economic viability
  • Be horrified when they hear about kids in cages and children being sent back to unimaginable violence and despair where they too could get pregnant against their will.
  • Never allow a 12-year-old to legally adopt a child, therefore they wouldn’t demand that she give birth either, because that would nuts!

And if you, dear reader are a card caring PLCC member and the above stipulations don’t jive with you, no problem. We live in America. I truly support your right to stand up for whatever you believe. Seriously. I don’t get it, but I support you.  On one condition…

Don’t bullshit me and call yourself Pro-Life. Tell the truth! Be ok with being a Pro-Birther. Own it. Flaunt it. Celebrate it. But stop fucking lying about it.  

(I highly recommend viewing this full screen with the music on. Song: Alone in Kyoto by Air. Created by Jarin Pruce.)

 

Six weeks ago my mom read a post I wrote and wondered (publicly in my comments section I might add) why I don’t share with her the shittier parts of having MS? It was a fair question that got me wondering. Maybe I’m too secretive? Maybe I’m too sensitive? Maybe I’m just an asshole?

So I decided to take a poll.  I sent an email to friends with chronic conditions and asked, “How often, if ever, do you share health information with your mother?”.

My friends with mothers who also have chronic conditions share everything. My friends whose moms live without chronic conditions share nothing if their moms are in their 80’s and the rest generally keep it light while hiding any bad stuff with mom’s that are younger.

My mom’s not only younger but actually a very easy person to talk to so why don’t I keep her in the loop? We discuss politics, religion, and family issues. We can talk about assinine pop-culture events then switch gears and have a deep, difficult, interpersonal conversation. She listens, only gives advice when asked and doesn’t hound me about the choices I make. So why not tell her more?

The more I thought about it, the more I realized that I don’t share that much with most of my friends or family. Over the years I’ve become a verbal ninja, able to switch topics away from myself with anti-gravitational deft and speed. I do this because chronic conditions are chronic!  I don’t have the flu or a rash that’s going to go away. My diagnosis often keeps me from living the life I want and on the occasion that I do experience a positive change it is usually slow going and non-linear.

No one wants to hear about my ring finger moving a quarter inch and frankly I don’t give a fuck either. Sure it’s great, but it’s a non-functional improvement that I’ll keep to myself until all of my digits are moving enough for me to hold a glass of wine again. Then I’ll tell folks about it.

Besides my husband knowing the good, the bad and the ugly, I find that I’m the most communicative with friends that also have diseases or chronic ailments. My friend with muscular dystrophy is the only person I could do a 3-legged race with. Not only do we have shoddy mobility in common, we also enjoy similar benefits from yoga, have the same amount of good and bad days as well as similar levels of dark humor, compassion and get-off-your-ass-and-just-do-it-ness. When she texts me, frustrated about falling  I don’t pollyanna her with positive bullshit nor do I ask if she’s considering an assistive living facility. Instead I listen. I remind her that she didn’t piss herself so she’s still winning. Sometimes I help her problem solve what happened and how to avoid it and of course, she’s my go-to person to text whenever I trip or fall. Likewise she treats me in an even keeled way with just enough M.A.S.H. humor to keep me from taking myself too seriously and she’s fun to go to concerts with.

My diabetic friend has a completely different set of needs than I do. She quantifies her  caloric intact, glucose levels, insulin amounts, exercise choices and meal times as much as I have to coordinate walking distances, outside temperatures, terrain levels, numbers of steps and access points. So basically she does math all day while I perform physics and we do these mental gymnastics on top of our day-to-day activities. When she says she has to eat at 7pm, we’re seated in a restaurant by 6:30, damn it. Likewise when we pick the restaurant we pick a place with ample, adjacent parking, tables on the first floor and air conditioning if we’re meeting during the summer. I overlook that she injects herself at the table. She pretends not to notice when my precariously balanced cane leaning against my chair, makes a loud noise when it crashes to the floor. We’re equal parts annoyed with our diseases yet equal parts compliant with what we need to do. So when we bitch to one another, no one tries to fix the other person or pray away their issues because we both know and respect how the other feels.

Asking a sick person about their health is like asking a golfer about his round. The proper answer to the question is, “Great.  I was three under par today!” or “Lousy.  I shanked severed shots and lost $200”. Then change the subject. No one actually wants a 20 minute monologue describing each drive, chip, and putt.

The same goes for marathon runners. “How was the race?” should be answered by, “I ran my personal best” or “It was brutal today due to the weather”.  Telling your friend how you shit yourself just a bit on mile 13, and that it was the biggest, mental, mind-fuck you’ve ever experienced, might be too much information.

Mom’s that have given birth, however, are the worst. They’ll sit at a co-ed table of strangers sharing labor and delivery stories, at work! Larry from accounting doesn’t want to hear about your episiotomy, Marcy! Even if his wife is 37 weeks pregnant.

The only people that truly want, understand and deserve the above details are other golfers, marathon runners or pregnant chicks. Otherwise, zip it! And that’s why I don’t share much about my health. The overwhelming minutia of life with MS is not worth sharing. It’s complicated yet not interesting and it keeps me from being treated like I used to be treated (like a regular person). And regular people don’t talk a lot about their health problems until they’re older. (Which might be why my friends with Octogenarian moms don’t say much to them?)

It’s easier to be treated like the old me when I’m not talking about my health. That’s why I write about it instead. I Vince Vaughn my thoughts and put them “on the line” so that I can release them from my body, mind and spirit. I’m pretty sure the combination of saying less but writing more is the only reason I’m able to stay sane through all this.

I do know that I don’t have the energy to worry about others, worrying about me and if I have to edit myself on this blog, I’d probably stop writing it. So how bout this…

When I have something good to share, I’ll let you know. I’ll let everyone know. Hell, I’ll probably post it on this blog. But when I’m trying a new medication or therapy, consider me like a fiction writer not wanting to give away the plot or a superstitious person, not wanting to jinx my own progress. I need to fail privately, process whatever went down, adjust and then share it on my own time table.

That doesn’t mean that I’m not an asshole. But at least I’m a sane asshole. I’m never going to talk more but I do promise to write more to keep everyone in the loop. In the meantime, maybe finding other mom’s whose daughter’s have chronic conditions would be better in the end than talking with me?

Just an idea. (That I got, not by talking but by taking the time to write down, re-read, and edit my thoughts.) Maybe I’m on to something after-all?