making the invisible visible: 30 things. #iiwk13

September 11, 2013September 13, 2013 • by kerri

I haven’t filled out the 30 Things About My Invisible Illness meme for a few years. [To be perfectly honest, and not to start any debates, but I actually am a bigger fan of the word disease than illness. But that’s another story–I feel like disease and illness are both states but illness often carries the connotation of “temporaryism”].

1. The illness I live with is: Asthma, anemia, uterine fibroids [and though not an illness, borderline ADHD]

2. I was diagnosed with it in the year: 2008 / 2012 / 2013 [/ 2013]

3. But I had symptoms since: 2008 / 2012 / 2012 [/ forever]

4. The biggest adjustment I’ve had to make is: Remembering to carry my meds with me.

5. Most people assume: That because the things I live with are common that they aren’t a big deal to live with.

6. The hardest part about mornings are: Making sure I have all the medical crap I need for the day organized [read: thrown haphazardly in my backpack]

7. My favorite medical TV show is: I don’t watch TV. But if I did, I still wouldn’t waste my time watching medical shit, I spend too much of my life dealing with it :].

8. A gadget I couldn’t live without is: Probably my iPod, not that it has anything to do with my asthma. [Though, it keeps the ADHD aspect of me organized :)]

9. The hardest part about nights are: Honestly? Remembering to actually go to bed at a proper time.

10. Each day I take __ pills & vitamins. (No comments, please) 7 pills–however, since my treatment doesn’t revolve around pills, I also take 3-4 inhalers and neb treatments as needed.

11. Regarding alternative treatments I: Am skeptical, outside of adjunctive exercise and balanced nutrition [something I need to practice more :)].

12. If I had to choose between an invisible illness or visible I would choose: Invisible.

13. Regarding working and career: I know that my asthma may change how I do things, but not limit what I choose to do! I’m very blessed to presently work in an amazing place with people who genuinely care about me–through a pretty bad asthma exacerbation last September, to like 3+ weeks (combined) off work through the spring and summer because of the anemia/blood transfusions/un-diagnosed fibroids causing me to bleed to death, my boss has never required me to submit a doctors’ note. How much my coworkers care is beyond amazing–we’re far more than coworkers :].

14. People would be surprised to know: I think there are a lot of things that people would be surprised to know about living with chronic disease, especially when you’re pretty young. I think it would surprise people that I very much work to hide my asthma symptoms in real life; I think it would surprise people to know how many [thousands of] times I’ve hidden in a bathroom to take my inhalers; I think it would surprise people to know how educated you have to be in this country to receive proper medical care.

15. The hardest thing to accept about my new reality has been: I’m not really sure this is a “new reality”. The reality is, I live my life with what’s thrown at me–and I think that’s what I’ve always done.

16. Something I never thought I could do with my illness that I did was: Really, I think I started tackling things after my asthma diagnosis that I never would have bothered with before. Simple things, but simple things that made me a better person. I think if anything, asthma made me more ambitious than ever feeling limited.

17. The commercials about my illness: Could not piss me off more. Take this drug and you’ll have perfect asthma control and frolic through the field of daisies with all of us in the Elusive Land of Perfect Control! I take three inhalers, 2-4 times per day, plus a rescue inhaler and nebs anywhere from zero to twelve times a day (on a bad day) and I still can’t run anywhere for very long.

18. Something I really miss doing since I was diagnosed is: Like I said, I live a much fuller life post-diagnosis. I can’t say that I miss living less ambitiously than I do now! So, I’ll go with breathing effortlessly.

19. It was really hard to have to give up: Once again, I say it all the time–“asthma may be a speed-bump but it’s never a road-block”. The only thing I really gave up was not having ridiculous lungs–and, I didn’t really have a choice in that, did I?

20. A new hobby I have taken up since my diagnosis is: Blogging, meeting people from the internet [ooh, dangerous! :)], exercise, and visiting my dear, dear friends at the pharmacy [kidding, dear God].

21. If I could have one day of feeling normal again I would: Feeling normal? I’m not sure I ever felt normal before I had all this weird stuff happening in my body–let’s be honest here, I’m rather strange :].

22. My illness has taught me: That I can choose how I define my own world.

23. Want to know a secret? One thing people say that gets under my skin is: “Oh, it’s ‘just’ asthma.” Yes, because BREATHING is not important AT ALL. “It’s all in your head.” Actually, it’s not–and I’ve got a copy of my methacholine challenge that proves that.

24. But I love it when people: Are aware of the realities of living with asthma, the variations of what “asthma” can mean and make an effort to be conscious of people with this disease. Or… if they’re interested in discovering the above!

25. My favorite motto, scripture, quote that gets me through tough times is: I think there are a lot of them, but mostly they come in song form.

Watch the Sky – Something Corporate (“and i’ve been up for days / I finally lost my mind and then I lost my way / I’m blistered but I’m better–and I’m home. // i will crawl–there’s things that aren’t worth giving up, I know. / but i won’t let this get me / i will fight–you live the life you’re given with the storms outside / some days all i do is watch the sky // […] i think i could use a little break [but today was a good day]”), has been a big one through long nights of asthma and ER visits for the anemia. From my ER visits this year, the picks were

Caves – Jack’s Mannequin (“no peace / just clicking machines / […] / i lay still, still i’m ready to fight […] / the walls are caving in / as far as i can see […] there’s no one here but me / beat my body like a rag doll […] windows leading to the past / think it’s time i broke some glass–get this history off my mind / […] everything’s a piece of everyone.“),

Diane the Skyscraper – Jack’s Mannequin (“but I don’t have the energy / so she plugs my machines back in […] / i’d be lying if i said this was my plan / but we are all in this together / see i’m trying but i just don’t understand / why i can’t predict the weather past the storm.”) and

I Swear This Place is Haunted – A Skylit Drive (“Is there something beyond science going on here? / in the dead of fear, fear / […] this is the last winter–part of a change for better / I’m moving forward now–turn all of this white, the creature at night / you said it would never find out where I rest my head at night.”.)

26. When someone is diagnosed I’d like to tell them: Do what you have to do, stay–or become–active, make good choices, ask a billion questions, and own this thing.

27. Something that has surprised me about living with an illness is: How much my perspective on just about everything has changed. For the better.

28. The nicest thing someone did for me when I wasn’t feeling well was: Hands down, Medicine-X last year was full of these things. People there, my fellow ePatients, understood my prednisone induced crazy. They asked the right questions and made me feel like I was supported and cared about. My friend Steve checked in a few times a day to make sure I was okay and kept offering to drive down the couple hours to Palo Alto if I needed anything. It was overwhelming, and I felt like shit, and I really could not have gotten sick in a better place as unfortunate as the situation was, because people there got it. People at home have a harder time comprehending it.

29. I’m involved with Invisible Illness Week because: Just because you can’t see it–doesn’t mean it’s not there. I usually look–or can look–totally healthy, even if I’m not.

30. The fact that you read this list makes me feel: Thankful. That one person at a time, you and I can change our own perspectives . . . to change somebody else’s.

ADHD + learning disabilities / being a student / kinesiology / life / mirror mantra

beyond expectations

September 9, 2013June 16, 2014 • by kerri

Last year, my university changed their graduation requirements for the kinesiology program. This means, since I started the program in 2010 [or something of that nature, I’ve been there too long], I can choose between the new option or the old one. [Main point: the new one requires only anatomy. The old one requires both anatomy AND physiology]. I met with the department chair last year to discuss swapping some previous credits in teaching/psychology related courses for other related ones, and seeing if I could switch anatomy for physiology–just to see if I maybe could handle that better.

Since May, the whole department has kind of switched things up turning into a faculty, however, so I e-mailed the new associate dean on Thursday last week to follow up–turns out that the department chair was taking my request to the curriculum review committee the next day, but we scheduled a meeting anyways. Within 24 hours of his response, I had received an e-mail from the chair as well as a follow-up from the associate dean […got that?]. Approved: Switching coaching/teaching requirement and swapping the psychology class. Not approved: Anatomy exemption/swap. So, I was rather surprised when the associate dean responded with my question of whether we still needed to meet with “I think we should still meet to discuss how you are going to handle the Human Anatomy requirement.”

So what’s changed between last round and this round? Another F, being assessed for learning problems, and becoming registered with Accessibility Services. I got his reply and my jaw just about dropped. I walked into his office this morning, and the first thing he said to me was: “Kerri my dear–let’s talk. The department is willing to work with you to get you through anatomy and out of here.”

I was choked up the whole appointment. The results of that meeting? I couldn’t believe it. At all.

The kinesiology department is not just willing to work with me, they are going beyond what I had ever imagined–much like the accessibility department did. I am floored.

The department is going to pay for a mentor/tutor to work with me. I was prepared to pay for a tutor [and I probably still will for some extra hours]. The number of hours they will cover has yet to be determined, but this is huge. On that note, their hope is that this person is able to work with me in lab . . . in a separate lab section to minimize distraction and ensure I am actually understanding things. This will also allow me to work a bit slower at quizzes in lab and give me a bit more time for the model to sink into my brain.

Second, we discussed testing, specifically in the lab. My accommodations through Accessibility Services already allow me lengthened time for tests [thanks second percentile processing speed!]. We have yet to figure out how we are going to make this work, but it is just awesome knowing that they will make it work. [He offered, also, to exempt me from quizzes and weight my final exams higher, but I decided that it is good to get that kind of progress report on a weekly basis.]

Third–yes, third, and definitely the most interesting–is that the associate dean himself is all over this. He wants me to meet him every few weeks for an hour or two so we can go over what we’ve been working on class–through this, he can figure out the best ways to help me retain what I’m doing in the course, and figure out what I need to work on and help me actually understand it–not just memorize it–and check in regularly about how things are going.

Seriously? Speechless. Honestly, I was told awesome things about this guy. And he not only met my expectations of his awesomeness–he went so far beyond them.

I hope that, with all of the above, I can go far beyond my own expectations, too.

faith / life

eight years.

September 8, 2013September 8, 2013 • by kerri

hello, I’m trying to focus but my eyes deceive me / focus — I’m witnessing history repeating.

–Made for TV Movie, Incubus

At about 12:30 am yesterday I thought about it. It being September 7th

And did not think about it again.

In semblance to what the rest of the faith aspect of my life has looked like for the last year and a half. if not more. If not more than the last year and a half, if not more distance. If not more of everything–except closer.

This was last year. And that is the same as my thoughts at present.

But I know I don’t deserve this. I don’t deserve anything. I am blessed. I am blessed to be here, to be thriving, to be alive.

You keep healing me in spite of me / opening my heart and killing me for me / bring me back to life, yeah I’m gonna be alright / i got You on my side tonight.

me, october 2010

So, I will say thank You. Thank You for having patience, thank You for giving me hope, and thank You for life. Because I don’t deserve this. At all. And I need to not forget that. I need to worship, I need to love, and I need to live.

Still, two simple words raise from my heart: “Thank You”. Thank You will never be enough, Lord.

Why?

Why can I not see all around me? Feel it? Reach for it? Think about it. Why am I so resistant, so distant?

So emphatic about staying this way? So consistently pushing away from God–the only One I need to be holding on to?

I have woken up in so many ways in the past two years–why not this one, too? Why don’t I feel like I want to try to fix this? Everything that’s kept me . . . made me alive. Why am I, like everything I hate, taking this for granted? My own cynicism is obviously part of the problem–seeing people who also identify as Christians–who frustrate me by their actions of hate. The label process that I try so hard to deviate from. The things that lead me to change the Religious Views section on Facebook so many years ago from “Christian” to “I worship JESUS”.

Jesus. He’s who it’s all about. And maybe, instead of trying to wrap my head around everything that the mess that is “religion” is . . . I should just focus on who HE is first.

I want to reach forward.

But even when I do . . . I still have to open my hands.

court is in session, a verdict is in / no appeal on the docket today, just my own sin / the walls cold and pale, the cage made of steel / screams fill the room: alone i drop and heal / silence now the sound / my breath the only motion around / demons cluttering around / my face showing no emotion / shackled by my sentence, expecting no return / here there is no penance, my skin begins to burn

so i held my head up high / hiding hate that burns inside / which only fuels their selfish pride / all held captive up from the sun / the sun that shines on only some / we the meek are all in one

i hear a thunder in the distance / see a vision of a cross / i feel the pain that was given on that sad day of loss / a lion roars in the darkness: only He holds the key / a light to free me from my burden and grant me life eternally. / should have been dead on a sunday morning, banging my head. / no time for mourning, ain’t got no time. / should have been dead on a sunday morning, banging my head. / no time for mourning, ain’t got no time.

i cry out to God, seeking only His decision / gabriel standing confirms i create my own prison

i created, i created, i created, i created, i created my own prison . . .

should have been dead on a sunday morning, banging my head. / no time for mourning, ain’t got no time.

my own prison, creed

I create my own prison.

And I’ve been freed. I only have to walk outside of this.

12 of 12 / life

12 of 12 – august ’13!

August 18, 2013August 18, 2013 • by kerri

On the 12th of the month, some people snap 12 pictures throughout the day and blog them. Here are my pictures from August 12th, 2013!

10:44 am – bathroom. Yeah, glamour. Didn’t take enough pictures so this one had to be included, which I took to send to a friend. So, I take two of these a day to basically prevent me from dying, instead of their intended purpose of preventing babies. So, I was not paying attention at all and ended up snapping my first pill of the pack out of the wrong day–since I take two a day, i usually start on the corresponding day of the week [sans stickers usually] and pop AM out of row 1 and PM out of row 2 for the first week, then do the bottom row all screwy like. So I tried to reverse what I did this round, and now everything is confused.

10:55 am – kitchen. Candy and Concerta. Which, you know, reminded me of the Green Day lyric from Jesus of Suburbia “the bible of, none of the above, on a steady diet of / soda pop and ritalin . . .”

12:34 am – kitchen. “Let me write it on your hand / so you won’t forget.” (Write It On Your Hand, Marvelous 3). NEED bus tickets.

1:05 PM – bus stop. Trying to get across the street but there are too many freaking cars. Don’t jaywalk, kids.

1:42 pm – bookstore. Why are the chem books like this, and the physics books not? THIS IS ALL PHYSICS. Also oh my goodness fancy.

2:03 pm – annex. About to meet Bryan for lunch. He and I are known to discuss the people who clean the floor in this building 80 times a day, so I tweeted this picture to him. [80 times is probably not an exaggeration].

2:42 pm – boon burger. Super simple vegan burger from Boon. To see Bryan’s mountain of meatlessness, click here.

3:15 pm – boon burger. This is how they remember where the order goes to :D.

3:19 pm – bannatyne ave. Bryan and I taking pictures. Except, you know, he wasn’t ready for this one but I HAVE TO INCLUDE IT BECAUSE I DIDN’T TAKE ENOUGH PICTURES. At least he looks like he is laughing, right? :]

3:20 pm – bannatyne ave. There we go! :]

5:05 pm – grandparents. Bryan dropped me off at my grandparents’ place, where they were outside and thus not answering their door. I figured it out and then sat here for awhile.

7:16 pm – grandparents kitchen. Late supper, which was all good due to getting boon’ed so hard. [Thanks for the variety of uses for Boon, Bryan!]. Grilled cheese, yay!

ADHD + learning disabilities / life

starting concerta

August 11, 2013August 11, 2013 • by kerri

Resistance was a major thing I felt in regard to the last point in the Recommendations section of the report of my psychoeducational evaluation.

It is important to recognize that though an ADHD diagnosis cannot be made based on the results obtained, the possibility of an ADHD diagnosis has not been ruled out. Considering that [Kerri] does exhibit some ADHD traits, she may consider discussing with her physician the possibility of a pharmaceutical intervention to alleviate her ADHD symptoms.

(Wang, p. 8, 2013)

It wasn’t a decision I had to rush into. However, given the realities of the Canadian medical system, I gave myself time to think on it, but talked to my primary care doctor pretty quickly on the subject of medication. I know of a handful of primary care doctors who are comfortable prescribing ADHD meds–mine wasn’t, which I was more than okay with. Instead she told me she could refer me to a psychiatrist–which for me was a much better solution. Because of the inconclusiveness of my “diagnosis”, I wanted to be sure that somebody with actual expertise in these things was working alongside me in the decision process surrounding medication.

That appointment came on Thursday. Wednesday, I didn’t want to go–the resistance returned when I screwed up dosing times for all but one of my asthma meds which resulted in waking up at 4 AM when the Zenhale and Atrovent simultaneously wore off, and forgot my pill at dinner until the next day at lunch. At this point, I had growing resistance to going on yet another medication. I psyched myself up by reading the treatment chapter from Delivered from Distraction the night before–which helped because it made me realize, unlike my other meds, if I try meds and either a) they don’t help or b) I simply don’t want to be on them . . . I can stop this one. So, I went into the appoitnment a bit more open minded.

Fortunately, the vibe of the appointment was really good, too. I was definitely nervous, which is typical of whenever I see any new doctor, but I had zero idea what to expect from this appointment. I filled out three more pages of assessment questionnaires then waited a long time. Things got better when I walked in to the doctor’s office to neutral colours with the lights off, natural light coming in from the open window, and the doctor’s bike propped up underneath the window. By the time three minutes had passed, she had told me about picking blueberries in her front yard and having “eight thousand mosquito bites”–between that and the bike, I figured things would be good.

After she glossed over my report with a highlighter, we did an hour of story of my life–all the typical intake stuff like I did with assessment. Through that and the new questionnaires she confirmed the ADHD stuff they had uncovered in my original assessment–that I experience significant inattention and impulsivity (but not so much hyperactivity aside from fidgetiness). The impulsivity thing always throws me for a loop–I don’t see myself as particularly impulsive (but maybe that’s part of the problem?). Her final “diagnosis” was that things were still inconclusive, but she was strongly leaning towards ADHD-PI (primarily inattentive). Story of my life not fitting into boxes (not sure I’d want that any other way :]).

Despite the inability to confirm a diagnosis, she concluded that I do have significant symptoms and medication could be a constructive way of dealing with them. Some discussion, explanation and demonstration with a wicked cool model of a tablet later, I walked out feeling a lot more confident about a lot of things . . . and a super intense looking prescription for Concerta tucked amongst some brochures in my backpack.

So, I then exchanged super intense prescription for innocent-seeming bottle of controlled substance [which at the time was totally freaking me out haha]. In reality, the extended release meds [like Concerta] are manufactured in a way that they’re basically impossible to snort/inject.

(Slide 40 – Credit to Medscape)

So, this thing allegedly lasts for 12 hours (which really means from like, 8-14 hours depending on what your body does with it). The outer layer starts working within an hour, then as it hangs out in your stomach, water gets absorbed into the capsule and pushes out the rest of the medication in a controlled-y manner or something. Fancypants. The #1 most well known ADHD med is Ritalin–all Concerta is, is extended release Ritalin (methylphenidate). “Did it on Ritalin, I got me some good grades . . .” / “On a steady diet of / soda pop and Ritalin . . .” / “Cause I’m worth more than this / so stop writing prescriptions for my Ritalin…” [Matthew Good, Green Day and Katy Perry all off the top of my head… there we go!]. Methylphenidate is a stimulant medication–as my doctor explained it, people who have ADHD have brains that don’t know how to “put on the brakes”–stimulate meds “wake up” the part of the brain that helps put those brakes on–focus attention, control impulsivity, and decrease hyperactivity.

It’s all a game of playing with dosing. Day one was like magic–I wasn’t fidgety, I had one thought in my head at a time. Day two wasn’t quite as good, but I also didn’t drink as much water throughout the day, so I’m trying to work at that. I’m at the kick-in point on day three now, and mostly I’m trying to keep really close notes on my symptoms and how the meds are working–after three weeks, I can either increase to a 36 mg dose in the morning, or split it in two [the bonus of splitting is that I get longer coverage from the meds–11.5h doesn’t really cover a productive school/work day if I’m studying until like 10 PM or something.

But it’s good. It’s another step that is hopefully in the right direction. It’s another tool that hopefully helps make things better. Every step, each modification means a bit more work . . . but also hopefully more success, too.

If you’re interested in the day-to-day bits, I’m tweeting on #startingconcerta.

Kerri on the Prairies

Seeing life differently.

making the invisible visible: 30 things. #iiwk13

beyond expectations

eight years.

12 of 12 – august ’13!

starting concerta

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