advocacy / health + fitness / wellness

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

• by kerri

–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.

health + fitness / life / wellness

intention.

• by kerri

The last six weeks was, I am sure, more than enough to make me unsettled (in a not-good way).

Last week, the seventh week, was about reclaiming ground, becoming more settled in my body, knowing things are getting better.

Saturday . . . i had this feeling arise over me. For the first time in a very long time, I felt healthy. I have clung on to that feeling for the past 30 hours. (My lungs still don’t feel right, but hey, otherwise I feel good, I can deal with the lungs. I’m blaming the rain for that).

Finally feeling healthy, though, made me realize everything I need to work on. Things I have the energy to work on. Finally.

Physical Activity.

Exercise is a thing that suffered–which is also a thing that I’ve found keeps me balanced . . . contributing to the state of emotional unbalance on top of the obvious physical unbalance.

Exercise graph

Part of this dropoff was intentional. When my hemoglobin was slipping bad, I was intentionally not exercising beyond walking to and from the bus, because I didn’t want to contribute any to the state of dropping–the reality is, I’ve been sicker than I cared to admit since March. And I was trying to be proactive and my doctor was not engaging with me on working with me on that.

The other part is that I simply could not do things. I would walk home from the bus and have to take breaks because it was too hard–my heart would pound inside me with even small amounts of moderate exertion. I would get short of breath and it wasn’t the asthma. I was a mess for a lot longer than I admitted to many people, but what else was I supposed to do? I didn’t know better that what I was feeling would become as bad as it did down the road.

This, I need to rectify.  Back to paying attention to the fitbit, and doing some TribeSports challenges to bring my focus back to where it should be.

Nutrition.

It is not so much the fact of micromanaging the micronutrients that I need to work on, it is just simply making healthier food choices. Leaning away from all of the stuff that I know I don’t feel good from or about after eating, and having all that stuff on a less frequent basis. It’s a fine line, and I know myself–and I know that I have a hard time balancing this stuff in the most basic way.

Creativity.

Writing has for as long as I can remember been my release. I started journaling and writing lyrics/poetry in the fourth grade. These things have been the sole methods of getting me through so much of the tough stuff in my life.  2013, having the theme of Make Yourself, I want to expand on that. I’ve been trying to make a more focused attempt at journaling–“and i scratched these words / into a black notebook”.

Words have always been my weapon. Music has been a second.

Visual art? Even farther, yet still something I have gravitated towards and wanted . . . but seldom wrapped my fingers around.

Friday . . . I started to transform that with a quote inspired from one of Andrew McMahon’s tattoos.

Winnipeg-20130623-00647.jpg

my intention / a bullet / my body / a trigger finger / . . . and my pen is a pistola.

my secret arsenal is an infinite, ageless inkwell / it’s a fountain of youth and a patriot’s weapon of choice.

pistola, incubus

I’ll be capturing that process on deviantART.

Balance.

I’ll be honest here. It’s a paradox: when my health is at its worst, the things that keep my body and mind balanced are the first to go in the effort to simply survive. I’m realizing now that this is incredibly backwards, yet . . . it feels incredibly necessary at the time.

when dark clouds cover the sky / like there’s no hope, You are my light / You tell me to live. / when i’m all by myself / and i’m scared about my health / You tell me to live. / and when You heal my broken wings / yes, You heal my everything / You tell me to live.

You tell me to live, the rocket summer

Be intentional.

This week . . . I am rolling back onto Operation Intention. Getting back to making better choices . . . for all of me. Body, mind and heart.

Recovery.

health + fitness / life / nutrition / wellness

only part of the story: nutritional deficiencies

• by kerri

IMG-20130502-00028.jpg

I’ve had a really hard week, both physically and emotionally.  While I’ve had anemia caused by iron-deficiciency for over a year, it has never, ever, kicked my ass as thoroughly as it has this past week. And in reality, it snuck up on me. I knew I was feeling more tired; I knew I was having more problems keeping up to my life. But it very, very quickly spiralled into something I had never experienced–an unignorable feeling of exhaustion, of tiredness, and ultimately it has let me, for the better part of the last week, unable to function.

I would not be surprised if other nutritionally-based deficiencies were able to kick peoples’ asses the same way that my iron-deficiency kicked mine.  The problem with nutritional deficiencies, though, are that people automatically perceive that you are not eating properly. I have to be extremely clear here: I am in no way a vegetarian nutrition superstar, and I am NOT solely trying to defend myself. I know that I do not always make the best choices. But even if you see somebody’s nutritional choices for one hour, one day, or one weekend, you are not getting the whole story of what is going on in their overall life–or in their body.

Last Thursday, I hadn’t been feeling well–well, nor had I been as of Tuesday of last week, either. I was extremely tired, but for the most part was pushing through. Maybe I took a nap when I got home from work in the morning, and maybe I didn’t feel quite right, but I was functioning. It had happened before, and I assumed that eventually things would balance out as had happened before. I kept taking three iron supplement pills a day as I had been for the past six-plus weeks consecutively, and figured that I’d catch up on sleep over the next weekend, and that I was feeling run-down from spending the past weekend in the US with my coworkers.  I got home from work before 10:30 that morning after a typical 7:30-9 shift, took a nap for an hour, and felt okay. Not great, but okay. A couple hours later, though, I was feeling much worse and made the difficult choice to ask my boss if they were able to cover me for the afternoon.

And thank God I did, because by 6:20 on Thursday night, I experienced some intense dizziness while doing dishes, and for some reason wandered into the bathroom. Where I nearly passed out and pulled a towel rack out of the wall in the process. In a flurry of dizziness, I stumbled from the bathroom to my bed where I spent the next nearly five days.  I realize now that it is completely possible if I had pushed myself and gone to work when I wasn’t feeling right, I could have crashed at work.

I’ve slowly been recovering. Very slowly. I spent nearly five straight days in bed. Yesterday, I spent about eight hours simply sitting at my kitchen table on my laptop, and I was exhausted. I have never experienced tiredness like this, and the feeling of slowly coming back from a place where my body had become extremely depleted, of not only iron but potentially of blood. We’ve been in contact with my primary care doctor and my gynaecologist, both of whom I see tomorrow.  I am working really hard at timing the consumption of my iron supplements better with added vitamin C, like I have tried previously, I am working at increasing the iron in foods I am eating . . . I am trying.

My diet may not be stellar. But it is only part of the story. And it is seemingly the only part of the story that people seem to want to pay attention to.

Because it has a simple solution. Because I can make the choice to modify that part. Because it is easy to lay blame.

I have spent a year beating myself up over this thing. About how my hemoglobin keeps dropping despite the fact that I’m taking the pills that frequently make me feel sick, that I am trying to modify other choices I am making.  But the reality is, is if my body can’t keep up with the iron that it is losing, it is never going to be able to replace it regardless of how hard I try.

Regardless of how much I blame myself. How much I blame myself for not trying hard enough. How much I blame myself for not being more proactive in my medical care earlier. How much I blame myself for what has happened this past week.

Because it is easier to blame myself for everything, than it is to accept that I don’t have control over 50% of the problem. Because with any chronic disease, lack of control over the situation is half the emotional battle.

When you’re feeling physically exhausted, it is much easier to blame yourself and experience all the associated anger, guilt, frustration and sadness all that more deeply.

And it is much easier to lay that blame on yourself . . . when others are laying it on you too.  When they’re lecturing you about how wrong you’ve been in the choices you’ve been making for yourself. And when it’s coming at you from all sides: family, friends, coworkers–people who are trying to be well-meaning, but are the ones who are completely contributing physical, emotional and spiritual burnout unintentionally.

I am already blaming myself. I do not need another lecture or a reminder that maybe I’ve fucked up.

And neither does anybody else with symptomatic iron-deficiency, or any other sort of nutritional deficiency or medical condition–yet many of us experience it too frequently.

I’ve experienced too many full on lectures or related comments from well-meaning people this last week. People who I love deeply, who I know are just trying to help me be healthy.  But you know what? When my body is already feeling like shit, that means my mind is already feeling like shit: a lecture is not helping. What does help?

The support of my friends. I love all of the people in my world. But like most things, once the first couple days pass of being sick from whatever cause, people fade out. If you want to help, stick around–even if we are not too interesting laying in bed, we really do appreciate that you are taking the time to simply be there for us.

Being supportive doesn’t mean giving me a lecture on how to manage my health–you are not in my body, and you are not my doctor or dietitian. It can be as simple as talking to me about something completely unrelated to distract me from how I’m feeling, or shooting me a quick text. Or posting something goofy to my Facebook or tweeting at me. Or learning alongside me–it is so simple, but my friend Steve simply asked me “What foods in a vegetarian diet are rich in iron?”–not only was this in no way judging or condescending, it showed that he cared enough to want to learn more.

Support doesn’t have an agenda.  Neither does friendship or love.

 

Note: This post is not aimed at anybody in particular. Its more about the force of accumulation.

guest posts / health + fitness / life / wellness

in case you missed it: an update to jay’s story

• by kerri

In case you missed it, an update to “A moment changes everything”: Jay’s Story was posted on Monday, so please check in to see how Jay is doing after his first year of living with diabetes!

As I articulated in the preface and post-script to that post, I am honoured to be able to share people’s stories of how they live, adjust and thrive with chronic disease. Jay and I have had many, many awesome conversations on the topic via e-mail before and after this post went live in January, and I am still blessed that he and all of the other guest bloggers who have shared their stories here, chose to take that step and share insight to their worlds.  To Jay and everybody else who has chosen to share their stories in this space: THANK YOU!

#hawmc / asthma / wellness

rise above it – #hawmc day 5

• by kerri

day five

two silhouettes jumping against gradient purple to orange sky in mid-air with arms extended :]

(image Credit: The Rhodesian]

just because you’re present doesn’t mean that you’re here . . . rise above it.

rise above it, switchfoot

With any sort of chronic disease, it’s all too easy to feel trapped by your own body. Like I’ve said before, it’s perspective . . . and perspective can be changed, but that sometimes doesn’t make it any easier to do. And the thing is, much as I’d like to–as easy as it might be–to separate my asthma-life from my other-life, it’s just not possible or smart. Ignoring it doesn’t push it farther away, and running from it just makes it harder to breathe.

As I was writing this, this quote from Tiffany popped up in Twitter.

I learned something on my journey through life. That I was the one preventing myself from moving forward. My past plagued my thoughts 24/7

I’ve been there. Sometimes I’m still there. And this, this isn’t freedom. And neither is the fact that in past years I’ve spent too many minutes fixated on where I thought I was stuck because of the fact that I had a chronic illness, instead of rising above it, kicking my own ass, and trying to work at “changing the standard of thinking“, as Jesse Petersen says.

And what does it come down to? Does it come down sitting in a ball, curled up and preventing yourself from shining . . . or does it come to freeing yourself?

I want to be a part of the picture above.  Freeing myself to do whatever I want in spite of my disease while being responsible about it. This is what it means to live in the moment, and take advantage of the only thing I am immediately in control of: right now. Because asthma, or any other disease, throws in a bunch of variables that are often unpredictable. This week, on Saturday and Sunday I felt perfectly fine, Monday and Tuesday i started going downhill, and Wednesday I couldn’t even breathe well enough to go to work. Tomorrow, or how good I’ll feel tomorrow, is never a guarantee.  For anybody, but it’s amplified if you live with a chronic disease.  I’m not trying to be morbid, just realistic. And I would surely rather be realistic and jumping into the dusky sky than I would either living with regrets of staring at barriers instead of climbing over them or in an emergency room because I’m not taking care of myself.

And that’s a choice. A choice to coexist, but not be limited by my disease.

I would rather make the choice to lift my hands to the sky, jump, shine . . .

And rise above it.