alive:living

When you have

your pulse and blood pressure checked. A blood draw. An EKG. Eyedrops and eye pressure checked. Bright lights shined into your eyes…

You know you are alive.

When you have

a dog lick your hands out of nowhere and rest his head on your leg. A conversation over coffee. Poutine, no matter how bad it might be for you. 11,359 steps on the Fitbit and counting. Excited hugs and high fives from kids. Coloured your hands pink with food dye and laughed, then fingerpainted with coloured pudding at work with three boys. A run in on the bus with a friend you haven’t seen in forever and you both jump off a stop later to go for Subway, a trip to Bulk Barn, and continue on to Toys R Us and Dollarama and CATCH UP. A silicone Lego ice cube mold arrive in the mail as a late birthday present. A million messages flying around about the plans for tomorrow and next week…

You know you are living.
I know I am alive, even if a little scarred.

And I know I am living. Fully.

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

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.)

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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.

“i’m moving forward now: the thought of a ghost brought me to life”

–i swear this place is haunted, a skylit drive.

It’s been four and a half weeks since I last blogged. Apparently losing a week of your life/near death experiences suck a lot more time out of life than just that one week.  For the record, I am staying more-or-less in-tact academically which is [very] surprising. I only needed to get one deadline pushed back, which was a deferral on my Sport in the Ancient World midterm. Six extra days to work through the things I missed meant I got a 78% on that test, which was much better than I’d anticipated even had I not gotten sick. I’m sitting at 100% in my Developmental Studies class (SERIOUSLY.) and got 63% on my Disability Studies paper (I am fully intending to argue that one).  As soon as I got back on my feet, I had to start drowning in school again. I had a full three days of all day work and nights till 3 AM on the two aforementioned papers that were the same week as the Sport in the Ancient World midterm was SUPPOSED to be (had my amazing instructor not granted my test deferral I’d have been screwed).

Other than academics, it’s been a hell of a few weeks. Two of the chaos producing things are so worth it: getting my Special Olympics season off the ground (six confirmed athletes, two unknowns, two coaches and five program volunteers: I need more athletes!) and planning a Team Asthma event for Sports Day in Canada. Things are fortunately falling into place but I now have five weeks to promote this event and get things off the ground. It never stops (thank God).  One of the two other chaotic things, however, was not anticipated and not a welcome situation, and I still have yet to figure it out.

I saw my primary care doctor two weeks after surgery. To say it sucked would be an understatement, and I am looking for a new doctor. To start, we discussed nothing much relevant to my post-surgical state–had I not been as angry as I was, I’m sure we wouldn’t have discussed it at all. I went in and tried to stay civil, and asked about flu shots. Flu shots are civil topics of discussion. I then asked if she would refer me to Alaa, the doctor I saw at the hospital who did my surgery. Through the whole multitude of gynaecologic related shit, my gynaecologist had been very available and more than happy to see me any time I needed–what he wasn’t, was action driven. He also had the ability that is probably very helpful in dealing with pregnant ladies to make a person very calm (and perhaps he should reconsider a career in something like criminal negotiation because it’s near impossible to get mad at the man), which makes it a bit hard to get mad at a person. However, he also dismissed my questions regarding the fibroid, saying that it was small and shouldn’t be causing my problems. Considering under his care I received multiple blood transfusions, that in itself should be enough to warrant a referral elsewhere. It wasn’t, apparently. My primary care doctor refused to make the referral until she “receive[d] the pathology report indicating [I] need ongoing care,” but apparently I didn’t have to see my old gyn again if I “didn’t want to”.

This is where I lost it on her. “I don’t CARE what some report says, I WANT ongoing care. He was apathetic towards finding the root of the problem from the beginning, and even once it was evident refused to deal with it and book surgery until my mom called him. That’s not okay. This time I almost fucking died. I shouldn’t have to spend ten hours in the ER prior to going into hypovolemic shock less than two days after a blood transfusion, and require resuscitation before I get proper care. How is that acceptable? That’s absolute bullshit.”

That about ended the appointment. I can’t say she really responded to any of it, but it certainly didn’t get me a referral anyways. I briefly discussed the weird inspiratory pain I’d developed following surgery (I was betting and she agreed that it was just a muscle strain from coughing) and requested to go for a chest x-ray to rule out anything bizarre–honestly, she refused, and asked about pain killers at which point I lied and said I’d tried the go-tos (I’d really only tried Naproxen which did nothing), telling me “Take two extra strength tylenol every four hours for three or four days–if it still hurts, come back in and I’ll send you.” Seriously? Not going to happen. Why on earth would I OD on OTC pain meds for really minor pain?

I got a requisition for blood work, but I left without booking a follow-up appointment and hoping I never had to go back in there. I got a call the next day saying my hemoglobin was 93.  The downfall of chronic disease is I need asthma medicine to live–and I kind of need a dealer.

—–

Given the inability to secure a referral from my doctor, I called Alaa’s office myself the next day. I left a message not anticipating anything, explaining who I was, that I’d seen Alaa in the hospital and he did emergency surgery on me, that my primary doctor refused to make me a referral, and that I would really like to see him for ongoing care.

Two hours later I was shocked to see “DC OB/GYN” pop up on my caller ID, saying “Dr. Awadalla would be happy to see you for follow-up and ongoing gynae care.” I have an appointment on Tuesday.

I began the quest to find a new primary care doctor, which has been quite futile. I have a bit of a deadline of December 5th [when I apparently long ago booked a follow-up appointment] unless Alaa or my psychiatrist will refill my asthma meds for me (ADHD meds appointment with a side of bronchodilators?).

—–

Last week, after the appointment being pushed off for nearly a week, I saw my old gynaecologist. Ready to give the man shit except, damn, he’s too nice.

“So, they removed a fibroid, eh?” I told him he had certainly been informed of it.

However, he gets huge props for the fact that the second question of the appointment, which certainly made me soften a bit: “Is Dr. Awadalla taking over your care?” When I said yes, he replied “He’s a very good doctor.”

“Yeah, I really like him.”

At this point I had to start answering him in more than a few words. He, I swear to God, asked “Have I seen this ultrasound? Who ordered it?” I reiterated that he had seen the ultrasound as both myself AND my mom brought it to his attention. “A submucosal fibroid–in over thirty years of practice, I have never seen that type of fibroid in a young person–they’re rare.”

Then, he apologized.  He apologized more than once. If you are going to majorly fuck up despite being a kind and skilled person, there is no way you can fix that: a sincere apology, however? It’s as close as you can get sometimes. He told me once again “I’m sorry we put you through all of that”, and I could genuinely tell he did feel really bad about what had happened–what he had missed, what he had overlooked.

“I accept that. But the only reason I came in today was so that I know that you know exactly what happened: so that you realize a week after you told me I didn’t have to come back for six months I was in resuscitation for hypovolemic shock. It’s not okay: it may not be the typical, but it happened–I’m proof of that. So next time you have a young person in here, presenting like I did, please consider it. Because I don’t want anybody else going through the hell that I had to go through.”

With that, we left the room.  And I even said “thank you” on my way out.
I booked it down two flights of stairs, finally feeling free.
I dug my iPod out of my backpack, and scrolled through.
freedom is mine, and you know how i feel: it’s a new dawn, it’s a new day, it’s a new life for me . . . and i’m feelin’ good.
feeling good, nina simone [muse cover]
Shuffle, ever appropriate, interjected:

but i am the reason that i will stay alive […] every now and then, i think about you: it’s bringing me closer to closure–every now and then i know it’s over. […] take everything you need and move on. we are the answer to the broken breaking through–take everything from me: ’cause i’m not dying, no i’m not dying today.

the energy, audiovent

Because never again do I want to be where I was.

the thought of a ghost brought me to life.

I was that ghost.

I’m moving forward now.

i swear this place is haunted, a skylit drive

Here’s to moving forward.

Again.

Always.

12 of 12 – april ’13!

On the 12th of each month, a bunch of bloggers from around the world take 12 pictures of their day and blog them.  Here are my pictures for April 12th, 2013!

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9:33 am – vaughan. I was lucky to get my 12:30 doctor’s appointment moved up to 9:30 [also known as “come whenever” because the assistant loves me]. I’m always mildly curious about this store.

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9:36 am – doctor. I pointedly ignore this sign. One time, my doctor walked into the office and I put my phone down and took my earphones out of my ears, saying “You know, if I actually listened to those signs and turned my phone off whenever I came in here, I would never get anything accomplished.” My doctor just laughed and told me “That’s fine.”

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10:02 am – doctor’s office. I make faces while waiting, apparently.

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10:12 am – lab. Classy, Dynacare. Classy.

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10:13 am – lab. Doing a full check on the anemia today, apparently. I told the doctor “Okay, if they’re going to take blood, can we check more than just one thing?” Hemoglobin, platelets, ferritin (storage iron), iron and TIBC later. I think Complete Blood Count was checked off somewhere, too.

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10:16 am – lab. This process is all very quick after I actually saw the doctor. I got the grown up needle this time. And I got to tell the phlebotomist all about 12 of 12, and she tried to tell me good times to take the pictures so they’d be cool :]. She was awesome!

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10:24 am – vaughan. I honestly walked by this puppy in the window, thought it was fake, and had to turn around and do a double take to determine its realness. Verdict: real puppy!

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10:35 am – school. Bought my textbooks for my spring course so I could take one of them to Accessibility Services to be sent off to be made into an eText so I can audio-ify it. The AS assistant is awesomesauce, and we had a fun discussion about this course and how she wants to take my books and read them. :] (And Starbucks. And how it needs to be the weekend.)

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12:06 pm – boon burger. Best. Vegan burger. Place. Evaaaar. DINOSAURS.

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12:39 pm – car. If you have a tea reading done, do you get to drink the tea?

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4:14 pm – gym at work. “Miss Kerri! The chicken’s leg fell off! [Gym teacher’s name] puts them on top of her pens when that happens! Put it on your pen!”

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5:45 pm – front lobby. Out of work early. Pre-coaching dinner.

dear snippy medical professionals . . .

Don’t start with me. You may have to put up with people like me every single day, but you are not putting up with me every single day. Which means, whoever pissed you off, or made you lose your personality way back when . . . they weren’t me, so you can re-gain your personality and your sense of humour for the five minutes you are with me because I am obviously making the effort.

This is a catch all. It includes all the testing people at my ophthalmologist’s office. It includes every grumpy receptionurse I’ve had to phone to book an appointment. It includes grumpy ladies at the ophthalmologist’s office who don’t seem to understand that i have a life and I work and go to class and yes, maybe I will have to reschedule my yearly ophthalmology appointment three times so that it doesn’t screw up my day/week/etc.

And now, it includes Eye Testing Dolores from today [I hope she is not reading this. If she is, hello Eye Testing Dolores! I hope you are well. Please turn that frown upside down when we meet again next year. I will draw you a picture of rainbows and cupcakes].

Eye Testing Dolores was not a happy camper today. She did not appreciate my light approach to eye testing. Look, lady, you are not twenty years old, with uncorrectable visual impairment in the left eye and ridiculously corrected in the right eye. You are not here because, by no fault of your own, you were born 10 weeks premature and have retinopathy of prematurity. You are not living with this thing every day, and, you are not here because you got hit in the face with a basketball and now need new glasses. It is your choice to work here, so please, do not make me feel like it is my fault that I can’t complete your tests in the first shot, or the third, but I can still actually SEE everything you want me to see. It is just that your flickery box is very distracting and I forget to look at the square, and I have never in my twenty years done all of these stupid tests.

Also, I am the patient, and I [read: my mom] am the one paying you, so honestly, get off your high horse and please refrain from telling me to put my phone away. Because you are not my mom.

After all the stupid eye tests were done, I briefly waited in the waiting room thinger until New Eye Doctor came out. Stupid eye tests took place after the ridiculously long form about my visual/medical history in which I had to indicate all of my father’s eye issues, put all my medications onto little lines, and check the OTHER: box and indicate retinopathy of prematurity, as well as give them my e-mail address for some unknown reason.

your eyes deserve an optometrist poster

and awesome doctors . . .

FInally New Eye Doctor called me in. I am a fan of this guy. The appointment was nothing spectacular, but it turns out my vision has actually improved, albeit marginally. It has only improved slightly, but I have gone form a -18.25 prescription to a -18. New Eye Doctor basically said I am so far gone that this will not make a huge difference (not in those exact words), but kind of cool none-the-less. I’m chalking it up to testing variance, but hey, sweet.  Plus, he had a sense of humour and laughed on multiple occasions.

DOCTOR: Do you have any questions?

ME: Yeah, why do I get to look at the fancy Apple display and you have to work on a crappy Windows laptop?

This was completely true, and it made him laugh. Apparently his colleagues wanted to go Windows and he wanted to go Mac, so they compromised-ish. I think he lost the deal, poor guy.

Now the hard part began, picking glasses. In contrast to Glasses Lady Who Only Wants To Talk To The Person Who Can See [aka my mom] on Tuesday, who really pissed me off. As soon as she took my glasses from me and I couldn’t see, she started talking to my mom instead of me. Woman, just because I can’t see, doesn’t mean I can’t hear. Thank God I couldn’t see her enough to be able to remember her.  Awesome Glasses Lady is ordering some frames in for me to try out [because apparently my face is too small for a bunch of the ones in store, and I can basically only fit some of the children’s glasses. Honestly.]  So once those are in, I get to go back adventuring in Glasses Land, the one specifically for people who need glasses stronger than the normal glasses stores can make–I kid you not.

And maybe I should take Eye Testing Dolores a happy picture just in case I run into her when I go to buy glasses.