ADHD + learning disabilities / asthma / health advocacy / politics / social media

$642.01 and then some.

• by kerri

I posted this on Facebook earlier today, after I left the pharmacy. After a few requests to make it public so friends could share, I did—and it seemed reasonable, 12 shares, 45 reactions and 59 comments later—many shocked that this happens in Canada—to post it on my blog, too.

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Do you know why Canada needs true national Pharmacare?
I do every day, but especially on days like today where I leave $642.01 behind at the pharmacy counter just to function for a month, for just 4 of my 7 meds. 

Did you know that despite being self employed and having two part time jobs, I can’t get insurance in Canada that covers medication for my preexisting conditions? Okay, actually I can, but it would cover $500 in medication: less than one tenth of my annual medication costs. Less than I just paid today. 

  • I can survive without Vyvanse for my severe ADHD, but I can’t thrive. That’s the expensive one, and it’s not an enhancer, just a sort-of equalizer. 
  • I require four different inhalers to manage my moderate-to-severe asthma. (One of those I’m on right now isn’t covered for asthma under Manitoba Pharmacare, so I pay out of pocket. Despite how well it works, I’ll switch it for another drug in not-winter to save money.) This is to BREATHE, which is not exactly optional.
  • Barring other radical intervention for my fibroids, I’ll need to stay on oral contraceptives for another several decades–and this is the only drug I may have a forseeable end date on. Despite my persistence, this is not optional. (And also, even if I were using them for contraception, does the province not realize paying for the pill for a decade is cheaper than probably just getting a baby born? Never mind making them a good human?)
  • Oh, and on top of the asthma medicine, I have allergic rhinitis, for which I consider the drugs “the optional ones”, but only because my sinuses aren’t super impairing–note, my doctors disagree with the optional-ness of daily nasal steroids, and support the use of singulair as an add on. 

I am productive and mostly healthy because I have these medicines. I’m lucky I can afford the deductible which is thrown at people like me in a lump sum at the beginning of the fiscal year. I will have another pharmacy trip or two where I leave a not-insignificant amount of money behind. Just because I can afford this now–with minimal expenses, living with my parents–doesn’t mean I’ll always be able to. 

Am I happy to have some provincial coverage? Yes. 
Do we need to do better? Unquestionably yes.

We need this for every person who needs to choose between food and medicine. For every person who cant financially handle a $500 emergency—40% of Canadians. For the parents who forgo their meds to let their kids play soccer–and for the ones who can’t play soccer because their parents need medicine. For every would be enterpreneur who could change the world but is stuck at a job because of benefits.

We need this to be a better Canada–that place where healthcare is a right because we take care of each other and we take pride in that. Except we stopped short, leaving patients who are still patients after they leave the doctors office often fighting to survive. We need more than “gap filling” solutions, we need Pharmacare for everyone, all the time. 

Canada, we can do better.

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Do you have a story about inadequate access to medication or medication coverage in Canada? Please SHARE IT so others know why this issue matters. One way you can share your story is to reach out to my friend Bill at FacesOfPharmacare.ca. You can also send your story to your Member of Parliament (find them here), and most importantly, VOTE in October for a candidate who supports a true national Pharmacare strategy for all Canadians.

ADHD + learning disabilities / advocacy / life

it’s not a label, it’s a bridge (part two)

• by kerri

I know I have ADHD. I’ve worked at embracing that, at changing the way I perceive things about myself because of ADHD, at being more patient with myself because of it. I write about it enough here, and share about it enough elsewhere (like Twitter and Facebook), that I’m cool with people knowing that I have ADHD. But, back in 2013 when I had my psychoeducational assessment done, the tests came back inconclusive for ADHD. They gave me specific points to work off of at school: try certain study strategies, receive accommodations, and consider ADHD medication to see if they alleviated my symptoms. I did all of the above—and they all helped. So, I became more certain that I had ADHD. After several months on meds, I became positive. But, I hadn’t seen it on paper. Paper really changes nothing, I know ADHD is real, I know ADHD in me is real, but paper told me my tests were inconclusive. And I think I needed paper to tell me, inside, even after two years on meds, that inconclusive was no longer the case. So I can finally stop those doubts.

Once a year, I see my psychiatrist. Yesterday was that day. I got a new prescription for Concerta, and asked her to fill out a form enabling me to access support services for students with disabilities, as I plan to return to school in the Fall(-ish) and study web development. Because that’s a good combo with a degree in gym, yeah? I hand my doctor the form, and she fills it out as I stare at her doggy in the corner (her name is Haley and she is cute. I was very excited that my doctor had her in the office today!). I quietly take my phone off the table beside the leather chair I’m sitting in and take this picture. (Haley came to visit me in the waiting room, too.)

https://i0.wp.com/farm4.staticflickr.com/3828/20286913218_0082fb2985.jpg?resize=375%2C500&ssl=1

I slide my phone back down, into my lap. Dr. G turns to ask me, “How severe would you say your symptoms are?”
“I thought that was a weird question–I really have no idea how to answer that.”
“Let’s see what psychology said.”
She flips through my chart, reads some pieces of my assessment to answer the question, and continues on with the form. We discuss my previous accommodations, she notes them down and asks me to review the form. Looks good (I realized last night that we forgot to note down the alternate format textbook accommodation, but that can be dealt with).

As I reviewed the form, though, I had to do a double-take.

Diagnosis: Attention Deficit Hyperactivity Disorder. DSM-V Diagnosis and classification number: 314.00. Retinopathy. Symptoms: inattentiveness, distractibility, some impulsivity, [arrow pointing down] vision. Severity checkboxes. Mild, moderate, and severe with an X beside. X beside permanent condition.

Because, her classification of my ADHD (314.00 on the DSM-V, or “Primarily Inattentive”) as “severe” is a lot different from “inconclusive” that I previously saw in writing.

i would but just can’t seem / to ignore what i can’t see.

—cause, let it happen.

As always, this doesn’t define me, but helps explain me. Like many ADHD-ers, I just felt different for much of my life: it explains the frustration, the self-doubt, the guilt that was associated with not being all people thought I should be, the huge shift I’ve felt in my world on meds, the issues I had in school, the issues I had/have at times interacting with people, the sensory overload, all the freaking feelings that sometimes just overwhelm me. ADHD helps explain that. Those things are all a part of me, and so is ADHD.

Now I know that yes, I fit solidly into this obscurely shaped non-box that is ADHD. I think, maybe, that just knowing that will help me move forward a bit more now. Accept my quirks, accept how they fit into this journey, and to roll with it, ‘cause I’ve seen it not only in me for myself, but on paper for myself.

It’s complicated to coexist peacefully with something that is so much a part of me, but simultaneously has dramatically impacted my life in perhaps not the most positive ways prior to my diagnosis. I can’t do anything about that, though, so I’ll continue to own this piece of circumstance—even if, for today, I can’t grasp the “severe” bit. Though it doesn’t really matter anyways—it’s all about how I choose to see what I’ll do with ADHD today.

i used to blame the circumstance: now i see it’s in my hands.

—effect, let it happen. 

This is what ADHD looks like.
Me.

But, I am far more than ADHD.
And I’ll embrace the good that has come with those four letters, too.