guest posts / health + fitness / life / wellness

“a moment changes everything”: jay’s story

• by Awesome Guest Blogger

[Scroll down to the blue text to read Jay’s January 2013 update!]

When I signed up for Physical Activity: Promotion and Adherence last spring, I had no idea that the mysterious Staff-1* at the time would be well beyond ‘just another instructor’.

The mystery instructor turned into Jay Greenfeld, who through lecture and many e-mail conversations, has not only helped me work through various things, but also to think of things differently in regard to not only exercise, but life, and continue rolling on the journey of changing myself for the better.  Additionally, the class was the most tangible and enjoyable experience I’ve had yet in university (can I take it again?!).  [And no, it’s not just because he throws snacks out to people during class. Although that is freaking awesome. Except he doesn’t throw the apples. Related: highly enjoyed the discussions on Mean Girls, cereal and how nobody ever uses the stairs].

After our class discussion on exercise and chronic disease, I was moved to blog my exercise and asthma story and opened up the floor to others who choose to own their disease through exercise to share their stories (I’ve been passing some of those stories along to Jay, too, by the way!)

During the lecture, Jay shared the Sparknotes version of his story of being diagnosed with type one diabetes in August 2011, and how that fits into where he’s at in regard to exercise and life.  As Jay said in class “Yes, it does suck, and yes it is interesting” . . . to which I couldn’t agree more.

I’m amped to have Jay telling his story, with the shared hope between us that it may help somebody else in a similar situation.  Take it away, Jay!

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jg3.jpgWe all hope to live fulfilling, memorable, and healthy lives. Leading healthy lives tends to be the most difficult for many. I was fortunate to be involved in athletics throughout my life starting at the age of 4. Although being born premature delayed the onset of the typical teenage growth spurt, I enjoyed the high level to which I was able to compete in Ice Hockey, Soccer, Tennis, and Swimming. After high school finished, I modified my participation in athletics to focus on coaching and used my personal time to exercise. While engaging in regular exercise, I chose to optimize my diet by eating balanced colorful meals. Professionally, I was fortunate to progress through an animated experiential academic journey that led me from the University of Winnipeg for college, New York University for my Masters, the University of Iowa for my Doctoral degree, and a 1-year internship at the University of South Florida as the final requirement for my degree in Counseling Psychology. I was blessed to apply my health and wellness strategies and stress management techniques to hundreds of University students and college athletes.

According to my friends I was the epitome of healthy living; abstaining from drugs and cigarettes throughout my life and maximizing each moment with the people I was fortunate to interact with. When questioned why I chose to live this energetic lifestyle (intentionally trying to motivate people of all ages to optimize their health), I responded: “Life can change in a moment and I want to ensure I have no regrets.” Those words were the very words I shared with a friend of mine mere moments after I finished the final requirement for my Doctoral degree. With my car packed it was time for me to drive from Tampa, FL to Winnipeg, MB and begin my formal career. I was set to teach health and wellness classes at the University of Winnipeg and work at a group practice doing psychotherapy for varying ages of the population.

It is important to note that my car was repaired after a significant accident in April 2011 that led to $7,000 damage, 24 hours in the ER, and $10,000 in medical bills (all covered by the other driver’s insurance). Four days later I flew to Iowa to defend my dissertation and celebrate my birthday with a few very important people in my life. Well, that was when things started to shift. I had to stop exercising to focus on the rehabilitation from the car accident and simultaneously started to lose weight for the first time in my life. I figured I was losing weight because I had to stop exercising, but when I lost 25 pounds between May 2011 and August 2011, I knew something was wrong. Nevertheless, I began the 2500 mile journey to Canada.

My last stop on my journey was visiting one of my closest friends in Des Moines and as we were eating dinner one night I said: “Something is happening to my body, but I don’t know what.” I continued the journey and had a delicious home cooked meal with a friend of mine and her mom in rural Iowa. It was a perfect ending, an exclamation point on my studies and moments in the U.S. with the most authentic conversation while feeling at home during this lunch. I realized one of the main reasons I decided to accept the job offers in Canada was because of family. So, I drove off into the sunset overlooking the breadth of corn fields that spanned the Hawkeye state. I left Iowa knowing I accomplished everything I wanted to do and was eager yet patient to return home to celebrate my sister’s 30th birthday with her.

Well if “a moment changes everything.” ….that moment happened once I crossed the border. For some reason between the border and my house (approximately 75 miles), I had to stop and use the facilities 3 times. I eventually arrived in Winnipeg and within 24 hours of rolling over the border, I was embraced by a wave of family members. I attended a wedding the next day and said to a friend of mine, “I am not well.” I called my uncles from the wedding and told them I needed some blood work because my energy was depleting as was my body weight. At this point I had lost 12% of my total body weight since April.

I met one of my uncles at the hospital at 8am the next morning and when he saw me he thought I was fading and he has no idea how I drove across the country looking the way I did. August 15, 2011 I had blood tests at 9:00 am, 10:00 am I had a meeting with the University of Winnipeg to review the syllabi I created for my courses, and came home at 10:30 to a voicemail: “Jay, you need to come back to the hospital, I have your blood test results. You have Type I Juvenile Diabetes.” I returned to the hospital and met with an endocrinologist and he told me that my blood sugars were higher than 36.0 mmol/L (close to 700 mg/dL). As the Diabetes Education Centre was teaching me how to use insulin, my legs and arms started to go numb, my vision became blurry, and my mouth and face were drying out along with the rest of my body with muscles protruding from my skin. I was going into shock and by 11:20 am I was carted off to the ER wearing nothing but a t-shirt, jeans and sunglasses as it was too painful to wear sandals. After the hospital staff spent 3 days rehydrating me I left and noticed that my car was hit from behind in the parking lot while in the ER. I returned to the hospital the next day because of boils on my head and face that were from a bacterial infection I developed from being in the hospital.

I have no idea how this diagnosis happened, but more so how long I was living with it AND how fortunate I am to be alive. As I was going into shock, thank goodness for the mindfulness breathing stuff I was doing in the ER otherwise who knows how much worse it would have got. So there it was– the moment my life changed forever. It is not life ending, just life modifying. Just because I will need to modify how I live (i.e., taking daily shots of insulin), I will not change my life or my perspective. I am fortunate that I have been leading a healthy lifestyle (with intentional eating and exercise) throughout my days which led the dietician to speculate that I was some sort of anomaly. After the brief dance with death I resumed physical therapy to repair my shoulder, back, and neck from the car accident, and made any attempt to get back to my “normal” life. In reality I was FAR from getting back to normal as I would come home from physical therapy with feelings of nausea and exhaustion.

I told my team of nurses and doctors, “Just tell me what I need to do and where my blood sugar levels need to be at and I will do it.” They gave me the information yet what they failed to mention was my blood sugars can be a little higher a couple hours after eating. Within weeks I was able to get my blood sugars between 3.5-5.5 mmol/L (64-100 mg/dL) and thought that is what they informed me would work. I began teaching and doing clinical work after Labor Day. Throughout my working days, I spoke with people at the hospital they provided encouragement for my numbers and amazement at how quickly I was able to have the numbers so close and so consistent. I took that encouragement and what I thought was progress and proceeded to live my life while most mornings and some days I had levels lower than 3.0 mmol/L (~75mg/dL).

So the days continued and I was having sugar lows 3-4 times/day leading me to feel faint, dizzy, and increases and decreases in body temperature. To compensate I had to treat each low with a lot of sugar and in addition to my meals I was eating the equivalent of 2.5 candy bars per day for 4 months. To help gain the original weight lost during the summer I was also given meal replacements as snacks. So, my body weight increased to 20 pounds higher than it had ever been in my life.

Let’s just say my first 100 days in Canada were not necessarily what I had hoped for (physiologically). Although work was extremely enjoyable in large part because of the people I am fortunate to collaborate with, life outside of work had been nonexistent due to the lovely August diagnosis. Although I felt I was making good progress with the blood sugars and such after attending 3 weddings in August– that was not the case which prevented me from going to Vancouver & Israel for the 4th and 5th weddings in 90 days. There had not been 1 day where I went without multiple lows. With the blood glucose meters available sometimes they are not 100% accurate and I was teaching in the afternoons with blood sugars closer to 3.0 mmol/L (less than 70mg/dL). Some of my lows (especially in the mornings) were borderline seizures and risk of a coma.

Unfortunately, the lows led me to feeling exhausted, blurred, and no energy to even think about doing anything after work. I reserved all of my energy for my students and clients and when I got home it was bedtime. I was passively moving through life in a fog, yet somehow able to function basically driving with the physiological gas tank on empty. Throughout the first 100+ days while living in Canada, I was the complete opposite of who I normally am and the antithesis of my book. I often limited my social phone calls to one per week due to the lack of energy to engage in a conversation where I am most present the way I want to be. If it wasn’t for email, text, and Facebook, I would most likely just not have the energy to be in touch with very many people. My social interaction outside of work focused on 11 hours of weekly physical therapy to repair my body and even that was an internal struggle to stay present, but I tried. I was hopeful that the physical therapy would help give me a sign of hope that something was progressing even if it required whatever little energy I had left.

Mentally and emotionally I was obviously frustrated at times, yet I did not isolate myself because I don’t like people or don’t want to see people. I just did not have the energy to do those things. I was not depressed or anxious about the current or future moments. I remained hopeful that things will continue to normalize as there are millions of people with this diagnosis. Physically, if it was not for physical therapy, I have NO IDEA where I would be. For the first time since April, I started to exercise at 25% four months after the diagnosis–a miracle really. Socially, with great difficulty, I made a few attempts to have the energy to connect with friends and people I care most about yet that has been limited and I remain optimistic it will improve. I had a few visitors come to town and tried to spend time with them after work. However, I was so disconnected from myself that although I felt my mind and heart were present in the conversations, my body was so distant that I was numb or void or any emotional and physical connection to . . . life.

By December 2011, I opted out of attending my graduation ceremony at the University of Iowa as I did not have the energy to even talk never mind fly. My skin was breaking out, my energy was depleted, my eyes were black and red, and at night my vision was often blurred and body helpless. I had learned I was taking too much insulin and HOW to adjust for that in a safe way. In August 2011 I was taking a total of 53 total units of insulin throughout each day and having 3-4 lows per day. The nurses adjusted my insulin slowly to 45 units per day. After a conversation with one of my first friends from pre-kindergarten in mid-December, I changed my total insulin intake to help increase the blood sugars and prevent the frequent lows. Currently, I am not taking any insulin and exercising at 70% until I return to my normal flexibility. The drastic shift in my insulin intake compounded by more routine exercise made significant changes in my ability to function at my pre-diagnosis levels. I also recognize and understand the “honeymoon” phase and know that I will return to taking insulin at some undetermined date. If it was not for that phone call with my friend and a shift in my primary endocrinologist, I have no idea if my energy would have returned as it may have been too late. As of the beginning of January I began to slowly resume normal cognitive, emotional, and physical functioning without experiencing the numbness, pain, and fog.

[Editor’s note: The following paragraphs are an update to Jay’s story, added August/October 2012 and January 2013] I returned from a wedding in late January with strep throat and the flu. After recovering and ending my routine physical therapy, I began trigger point acupuncture on my shoulder, neck, and back, 3 times/week, which helped tremendously. I had also developed excruciating pain ion my lower left abdominal region which was later diagnosed as myofascial pain syndrome causing pain when I would walk and sit for longer periods of time.  I recovered from the upper body injuries by the end of February. Shortly thereafter as I intended to resume my normal exercise, I tore a muscle in my other shoulder. I returned to brief physical therapy for a couple weeks and began massage therapy 2 times/week for a month. By the end of March, I felt myself returning to normalcy. So, I resumed the slow, steady, and light exercise and by June I needed to start taking insulin again. The amount of insulin to carbohydrate ratio changed 4 times obviously leading to more lows, but with the experiences from the year, I understood how to work with it. Due to the Diabetes, injuries take longer to heal and it was not until August when I started to feel relief from all the injuries.

I then learned in September 2012 that the odd stomach pains that began during the summer of 2012 turned into frequent trips to the GI unit and they couldn’t find anything. So, I went with Eastern Medicine and they discovered a Candida overgrowth that leads to chronic fatigue, bloating, and cramps. So, the abdomen pain was lurking for months as was the excessive tiredness, because I had been living with a yeast infection since October 2011. The yeast overgrowth was better explained by taking too much antibiotics that were prescribed for the pain and various illnesses caused by my frequent appearances at the hospital. I then had to go on a detox diet to clean out the excessive yeast. So I was drinking nothing but these powdered shakes for 4 weeks to repair my stomach lining. The yeast had infected my body so much and certain foods I was eating made it worse leading to my organs (i.e., nervous system) shutting down in Sept/Oct 2012. I had lost 15 pounds in 2 weeks and apparently my small intestine was damaged, my stomach lining was torn, and my gastrointestinal tract basically stopped functioning. Through it all I stopped needing insulin and had to remove gluten and dairy from my diet in order to function.I started to see an Osteopath in November 2012 and he had told me after assessing my body that my organs were in a sort of earthquake from the car accident leading to damage on two spots of my spine and the reverse side– my bruised esophagus, and damaged small intestine, pancreas, and lower ab region.

By the beginning of December 2012, my blood sugars were finally balanced needing a maximum of 10 units of long lasting insulin (5 at night and 5 during the day), my injuries were healed, and my exercise was finally optimal.  I had flown to New Jersey to visit my sister, came home with the flu, and once I recovered, it was January 2013 when I felt myself, my body, and my world were truly healing. Finally, after 20 months, I can honestly say, it’s been quite the ride (and continues to be). Regardless of the routes I took to heal, it was more about what was best for me as I felt both Eastern and Western medicine contributed to my health improving. After seeing 8 different specialists for 12 different physical injuries, strep throat/flu four times, and the Diabetes diagnosis . . .  I am moving forward, because I refuse to give up.

jg1.jpgI love each one of my friends and family members, who have offered their support (especially those select few who have truly articulated themselves so beautifully). I apologize for the people in my life who I may have neglected or sent mixed messages to as I try to recover and I am taking each hour at a time. I am sad by some of the connections I have lost because of my inability to truly communicate my experience as it was happening. I have understood why certain friends and people in my life may have been offended by my lack of consistent communication (both verbal and nonverbal) and unfortunately I need to be focused on my health. Finally, I am beyond appreciative of the support I have received from my students as they have sent many emails sharing their experiences and thanking me for being so open about my reality with them during the semester. I have learned that we all have challenges in life and how we respond to these challenges is what will make all the difference. I openly accept my new reality until my different normal is settled and defined. I acknowledge that it could be a lot worse and it still sucks… let’s be serious, it sucks AND I will be ok. I still hold true to this quote:

“Attitude is more important than facts. It is more important than the past, than education, than money, than circumstances, than failures, than success, than what other people think, say or do. It is more important than appearance, giftedness, or skill. It will make or break a business…a home…a friendship…an organization. The remarkable thing is, you have a choice everyday of what your attitude will be. We cannot change our past…we cannot change the action of others. We cannot change the inevitable. The only thing we can change is our attitude. Life is 10% of what happens to us and 90% of how we react to it.” –Charles R. Swindoll

As I was fortunate to share with my students and have talked about this many times over wondering why bad things happen to good people and I am beginning to learn why. I think part of it is because most people won’t listen to bad people yet they often have their ear to the floor when good people speak. I seem to have led a healthy lifestyle. I have devoted my energy and efforts to helping people make healthy choices for themselves and hoping to inspire them to maximize their moments…. only to end up with some chronic illness. It reminds me of 3 things:

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1. Throughout life I chose to take risks and create adventures, travel and learn about this world, and truly live life to the fullest throughout my time just in case something came along that limited my activity… and here it is. I am only hopeful people are able to realize how lucky they are if they do have their health. It is very easy to take advantage of life before a physician tells them they need to make drastic changes. Why wait?

2. It also gives me a moment to reflect on who the important people are in my life why and how fortunate I am to have them help color my world.

3. I am confident that I will return to normalcy and this little bird will fly again regardless of how long it takes for me to “learn how to fly when I ain’t got wings.” I am inspired by the courage, resistance, and perseverance of so many who have been diagnosed with any form of chronic illness. I thank those in my life for their patience and understanding as I WILL reconnect with my mind, body, heart, and soul… one moment at a time.

I am thankful for the nurses, doctors, family, and friends affiliated with the medical field who have helped add insight and provide suggestions. I continue to realize, even though at times I was running into the wind, fighting the battle with cardboard while my feet were stuck in concrete, and wearing kryptonite around my neck, I am still the axis to my world.  I am the one who controls the speed and direction to which it turns and how each moment is defined.

Good things . . . come from the choices we make in life . . .

Jay M. Greenfeld, Ph.D.

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Songs to accompany Jay’s reflection: A Moment Changes Everything – David Gray, Stand – Rascal Flatts, Little Bird – Kim Sozzi, Learning to Fly – Tom Petty & The Heartbreakers

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Thanks so much for sharing, Jay!  Love the music picks and the football picture!

I always feel hugely blessed being able to share stories of people I’ve met in “real life”, and I really appreciate Jay taking the time to share and be so open in class!  As I’ve said before . . . you just never know what a person is going through at a given time, and how well they can keep on rolling with life, and how resilient we can be . . . even when it feels like everything is up in the air, as is the reality with any invisible illness.  Had we not had the discussion that we did in class, I never would have known what was going on behind the scenes for Jay, and how valuable the connection can be from simply sharing these stories.

In addition to teaching university courses on health, exercise and wellbeing (and the whole list of things involved within those topics), Jay has a PhD in Counseling Psychology from the University of Iowa and is a practicing therapist.  He has special interest in exercise psychology, stress management and fitting exercise into the craziness of life, and how this affects people of all ages, primarily adolescents and university/college students. Jay is the author of My Choice, My Life: Realizing your ability to create balance in life (free shipping if you order here!), which is a fabulous resource and I totally recommend it!

Additionally, Jay seems to have an endless store of quotes in his brain, along with an amazing and seemingly relentless energy and passion for all he’s doing . . . and colouring outside the lines! [Stay tuned for more on the Good Things, also!]

advocacy / dare you to move / guest posts / health + fitness

living vertical: steve’s story

• by Awesome Guest Blogger

In 2012, Steve Richert and his wife Stefanie will embark on the adventure of a lifetime–three hundred and sixty five days of climbing with a goal of changing people’s perceptions of physical activity and being active with diabetes.  Diagnosed with type one when he was sixteen, I’m blessed to have Steve here today sharing his story of owning his diabetes through changing his perceptions, what he’s doing through climbing to educate and advocate for physical activity as an integral part of diabetes management, and what he’s going to be up to in 2012.

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When I woke up in a hospital bed 13 years ago and was told “You have Type 1 diabetes” I had no way of knowing how much it would change my life. Today, this condition I live with has shaped who I am and has caused me to reach greater heights (literally!) than I may have otherwise.

My first reaction to my diagnosis was that I determined to find a way to beat it. I couldn’t stand the idea of being dependent on medicine or hospitals. I wanted to be free—and the fact that the doctors all told me that there was no cure, made me decide that I had to simply find a loophole.

To start with, I decided that I would prioritize my health above everything else. As a 16 year old, that meant explaining my strict diet to other kids in the lunch room and checking my blood sugar before (and during) soccer games, always carrying food in case my sugar dropped low and not getting to treat eating as a recreational activity. Diabetes forces you to redefine your relationship with food—or lose your eyesight, your limbs, your kidneys and circulatory system—so there is a lot at stake!

Fitness became a big part of my life because the insulin injections that I took would work more effectively when I was active—playing sports and working out basically became medicine for me—both to help my body use the insulin I took and also as a means to combat stress. As I grew older and made it through college, the mental aspect of diabetes began to impact me—or at least to the point that I suddenly became aware of it.

Having a chronic illness carries with it some sort of routine that you must adhere to in order to stay well—and while this monotony can allow you a measure of success in dealing with the disease, it causes you to become tired mentally. Depressed. Bored. Hopeless.

I was staying healthy by just eating well and going to the gym, but I knew that I needed to escape the routine if I was going to progress—and that is when I found climbing. I had tried climbing when I was in high school as part of a Phys Ed unit. It initially appealed to me but I didn’t really know how to get into it. So I let it be. Once I revisited the sport after college, it became both a physical activity and mental stimulant. Climbing became my means to explore the world outside my comfort zone: my gateway to the unknown.

I followed the path that my passion led me down and I began learning how to teach others to climb and in 2009 I began working as a climbing guide. I get great enjoyment from being able to teach people to climb and showing them that they CAN do it. Taking something that seems impossible and making it possible is the magic of climbing. Some of the richest experiences I have had climbing have come from situations that held an unknown—that became a success only after the fact.

When I tell people what I do to stay healthy, they frequently smile and shake their head: “That’s fine for you, but I can’t do enough pull ups” or “I am terrified of heights—I could never do that”. Those are the people that I MOST want to take climbing, because turning that can’t into just did is a life-changing experience—and I want others to experience the power of the natural world like I have—through challenging themselves!

Recently, this exact initiative has been my focus. I decided that since I can’t bring people to the mountains, I can bring the mountains to the people—through film. Starting on January 1st 2012, my wife Stefanie and I will begin 365 days of climbing across North America, which we will be filming to make an in depth adventure documentary that will bring you into the high and wild places that we will be climbing! We are selling all of our possessions that won’t fit into our little red hatchback and setting off on a grand adventure. We want everyone to follow along. We will be blogging at www.livingvertical.org where you can keep up with our adventures and support our film if you would like to be part of what we are doing.

My goal at 16 was to overcome diabetes. 13 years later, I still have to take insulin injections 5-10 times daily. I still have to stick my finger 4-6 times a day. There still is no cure. But diabetes has forced me to problem solve, forced me to raise the bar and step up and out of my comfort zone and given me life experience that a pharmaceutical cure would have stolen from me! I consider myself blessed to have the opportunity to take on this challenge and I look forward to sharing my successes, struggles, failures and mountain-top experiences with you all during 2012!

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Steve is the founder of Living Vertical as well as a climbing instructor.  In 2012, he and his wife Stefanie will be picking up their lives and heading out on the road to spend the year climbing and spreading the message that yes, you CAN do this!  LivingVertical is a non-profit organization that uses climbing and organic nutrition to empower and improve the lives of people living with type 1 diabetes.  To help Steve and Stefaine reach their goal, please consider donating to their project here (all kinds of cool incentives, too!), or contributing through donations of supplies they may need along the way, specifically climbing equipment, snacks and OneTouch blood glucose test strips–gotta keep our friends safe and healthy on the road!

As Steve’s mantra says . . . “Why wait for the ‘cure’?”  What are YOU doing to stay active and healthy with chronic disease and own it — not tomorrow, not next week, but today? Want to share your story?  E-mail me and join the journey.
asthma / badassmatics / health + fitness

knowing when to step back: i could use a little break.

• by kerri

Along with knowing how hard you can push yourself, there’s also that fine line of knowing when to step back.

Throw chronic disease in the mix, and that line blurs even more.

For me, it’s evident that I don’t exercise when I’m not breathing at 80+% of my best peak flow [aka in my yellow zone]. Especially right now when I’m not even doing anything and am breathing in my yellow zone. Something earlier compelled me to attempt some push-ups. Because I’m a genius. Three of them and I was on the floor, and not in push-up fashion [granted right now I am doing modified push ups. But that is 1) better than no push ups and 2) another story for another day].

Oh right, and the whole mom quote of the day saying “Yeah, you don’t sound healthy when you cough.” Thanks, Mom. Thanks. [That said, I have a normal, baseline cough. It is not as brutal sounding or feeling as this sick cough is. Sick cough you can totally tell there’s rattly gross junk in there.

And it sucks. I’ve essentially gone from almost 30K last week to zero, which will remain zero unless I get better. I threw some bicep curls in tonight while printing an assignment because really, 3 x 10 with five-pounders = not terribly taxing on the lungs and at least I did something a little good. YES, if I’m just flaring mildly, I often do throw a workout in there. I probably shouldn’t but I do. I catch a cold though, and everything gets put on hold, because my lungs don’t take that well.

That’s what’s brutal. That I may actually end up backtracking having to take a week [or more] off of working out. I’m averaging about six hours of physical activity per week, probably about four or so of those in actual workouts, and the rest in commutes and stuff. I’m 21 kilometers behind where I was in October for November, which is something I definitely would have caught up with this week if I wasn’t sick. Thank goodness i’m not training for anything [training? What’s that?]

It’s brutal when I was so excited to tell my doctor on Thursday that I’m doing fantastic and exercising for like four hours a week and so on. And now I get to go in and tell her I’m burnt out on the asthma shit and can we please get me in and out as quickly as possible so I can go on with my life outside of my currently screwed up lungs.

Oh, Mom and Grandma, if you’re reading this, consider this your disclaimer on the fact that I’m about to give asthma The Finger in this picture and drop an f-bomb in the next paragraph:

Last night, today, THIS is how asthma makes me feel. Pissed off and exhausted and angry. Fuck asthma. Screw the nebs and the inhalers, the jitteriness, the coughing, and the not being able to clear this shit out of my lungs. I’m waking up several times a night, and have done so multiple nights this week, and then I have to be awake and think about how while this flare and this cold are temporary, this disease is forever. And how I will have to do this again at some point after I get better. And that’s something that’s hard to think about. It’s much easier to deal with when I feel okay and I can just not have to deal with thinking about it until I get sick or flare again. I realize I have no idea how I went through months at a time of feeling like shit without a burnout. I have no idea. The intensity of it increases and decreases, but this intensity is what some of my friends with asthma face every single day and then some [also, to break the seriousness for a moment here, totally starting a giving asthma the finger project over here on Facebook. Because it’s therapeutic].

Last night I was burning out on the asthma stuff hardcore; it was honestly the lowest I’ve felt in years about something in my own life. Today I started out rough but have been trying to step back in a different way; push it out of my head, focus on one doubled-over coughing spasm at a time, one inhaler or neb at a time, one breath at a time.

Yeah, I need a break from this. That’s not going to happen, and I’ve accepted that. I know I will get better from this, but I also know that it will happen again. Because you can never let your guard down — you can’t just stop the inhalers, the doctor’s appointments, the germs, the nebs, the medication-induced jitteriness and tachycardia, the frequent hand-washing, the thoughts of every little step involved in taking care of yourself. And you know what, this is my reality. Nobody gave me a choice in the matter of having to share my body with asthma, but I do have the choice in how I perceive it [own it] and how I fight it with every last thing I’ve got.

And if I can have even just one more little piece of control in this that is in my control and doesn’t come off of a prescription printout, I want that. I want to throw all the fight I have into this disease — not just for me, but for everybody. And being able to share that with everybody–that your healing, inside and out, your body and your heart, doesn’t have to come from a pharmacy. That little piece is a big piece of my life: exercise.

But for now, it’s nebs and Watch The Sky on repeat.

Trying to remind myself that: even if today was a good day wasn’t true for today, it can be true for tomorrow.

i’m lost at sea. the radio is jammin’ but they won’t find me. i swear it’s for the best, and then your frequency is pulling me in closer until i’m home. 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.

this room’s too small, it’s only getting smaller, i’m against the wall. and slowly getting taller here in wonderland, this guilt feels so familiar 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. some days all i do is watch the sky

i think i, i could use a little break. today was a good day. i think i, i could use a little break. but today was a good day. and it’s a deep sea in which i’m floating, still i seem to think that i must crawl. there’s things that aren’t worth giving up i know, when you can’t bear to carry me, i’ll fight. you live the life you’re given with the storms outside. some days all i do is watch the sky. today was a good day. today was a good day.

watch the sky, something corporate

badassmatics / dare you to move / guest posts / health + fitness

mental health and exercise: natasha’s story

• by Awesome Guest Blogger

Over the last year or so as I’ve been switching a lot of gears in my own life, the amazingness that is the internet has facilitated the growth of a friendship between two people halfway around the world from one another who have, in my opinion, far too many parallels between themselves for it to be a coincidence (that said, I don’t believe in coincidence).

I’m blessed to have my friend Natasha sharing her story here about the effects exercise has on not only her body, but also her mental health (and that whole body image monkey that comes with the intermingling of the two).  Natasha lives in the Netherlands, grew up in the UK, and is a Canadian citizen [yay for Canada!], which makes for a lot of interesting discussion!  She’s also in the fairly recent past completed two triathlons and her first half marathon–no small feat for anybody, but when you add not only asthma but also a host of mental health problems, you’ve got one amazing woman!

It takes a lot of guts to open up about mental health issues in a forum such as this, but it’s something that needs to be talked about, so I’m really excited to be able to share Natasha’s story.

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natasha

I think it’s fair to say that I have a long standing love/hate relationship with exercise.  I’ve had the image of myself as exercise-hating, non-athletic and unfit as long as I can remember, and yet if I think back to my childhood, I don’t think this was always so.  It’s a fair point that I never fared well in team sports – a lack of co-ordination, coupled with being prohibited from wearing glasses in school PE lessons didn’t make me a very useful person to have on a team.  And then, of course, there was the fact that I was sick on a fairly regular basis.  I was only diagnosed with asthma in my early teens, but the signs were there from a younger age.

On the other hand, though, I used to love going on cycling ‘expeditions’ to the local woods, or to the park.  I enjoyed gymnastics, skating, skipping, playing elastics… I think I wasn’t the inactive child I picture myself as.

Kerri’s already had a couple guest posts by other asthmatics, and I’m not sure that I have so much to add, so I want to take this post in a slightly different direction and rather than focus on the topic of physical health and exercise, to direct my attention to the area of mental health.  In reality there’s a fine line between the two things, and for me, at least, the two are very intertwined.  As a teenager and through much of my twenties I suffered from depression, and both then and now I’m more prone than the average person to anxiety.

Cause and effect are a murky line, I’ve been recently diagnosed with ADHD, with which both depression and anxiety are often linked – either through biochemistry, or simply the result of trying to fit into a round hole as a square peg.  I also suffer from a condition called Poly Cystic Ovarian Syndrome (PCOS).  PCOS causes hormonal imbalance, which leads to weight gain and hirsutism amongst the more visible symptoms.  Needless to say, neither the body image issues which result, nor the wonky hormone levels do much to help your mental and emotional health.

Between issues of self-image, and the breathlessness which came with the asthma, then, exercise quickly because something I hated as a teenager, in a world where school PE class involved tiny gym skirts, which suited only the sylph like.

And yet, here is the biggest irony of them all.  The PCOS, the ADHD, the depression, even the asthma, exercise would seem to be that magic pill that has the power to help all of these conditions.  The one thing you can do for yourself, without cost, without resulting to pharmaceuticals.

But…

The weight gain caused by the PCOS keeps you out of the gym because you’re ashamed of your body.  The ADHD distracts you when you intend to go out for a run.  The depression… well, really, when you’re curled up on the sofa in a ball of misery, does stepping outside for a walk even cross your mind?  If it does, it only serves to remind yourself how worthless you are, because it’s a beautiful day outside, and you just can’t face it… yet you hate yourself for wasting it.  And then, the icing on the cake, the anxiety, the fear that you’ll have an asthma attack you can’t bring under control.

When I read back over that last paragraph, I have to say that it doesn’t sound very hopeful.  And yet, last year I took part in a 160km (100miles) walk in four days.  After a year sidelined from running whilst I worked to bring my asthma back under control, this year I ran my first half marathon, and took part in two triathlons.

Yes, I am still overweight, although I have it under better control than in my teens.  I can’t say that I’m happy with my weight, but I’ve learned to live with it, and I haven’t stopped striving to lose those final pounds.  I’m learning to take baby steps, set myself concrete goals, and figure out how to work with the ADHD, rather than waste my energy fighting against it, and myself.  The anxiety remains, but I refuse to let it defeat me, and with every small success, I come closer to defeating it.  My asthma is better managed, and I’m beginning not only to run despite asthma, but to learn to push myself beyond what I believed were my limits.

And yes, it is true, the further I push myself out of my comfort zone, be it facing an Open Water Swim in a triathlon, or sparring in a kickboxing class, the more I feel the benefit, both physically and mentally.  I may not be losing weight, but I’m toning up.  I may still get more out of breath on the stairs than my colleagues, but I know that’s the asthma talking and not my fitness level.

And most importantly?   At the end of a workout, I feel like I’m on top of the world.

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Thanks for sharing your story, Natasha!  (Gym SKIRTS? You poor thing!)

Natasha lives with her crazy cats, enjoys reading pretty much anything she can get her hands on (she keeps saying she needs more bookshelves!), and is a software architect with a passion for photography and travel.  Natasha blogs at Heron Underwater, sharing her stories of athletic endeavours, her health and life in general.

asthma / badassmatics / guest posts / health + fitness

becoming an athlete with asthma: elisheva’s story

• by Awesome Guest Blogger

Several years ago I connected with Elisheva over our common bond of our occasionally spazzy lungs.  Since then, she’s become among my closest online friends, and we’ve shared in both frustration and celebration with one another. She is currently training for the Tel Aviv Marathon 10K and I’m excited to have here sharing her story about being diagnosed with asthma in middle school, growing from that point forward, and her current fitness goal participating in her first race.

I’d also like to add, that while Elisheva downplays her story with the “mild asthmatic” clause in her second paragraph, I’m thankful she’s sharing it because it’s a story that a lot of people with asthma can identify with, as somewhere from 50-75% of people with asthma fall into the “intermittent or mild” categories (Lieberman, AAAI), like Elisheva does.

Take it away, Elisheva!

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This is in response to the challenge Kerri posted in her post “exercise and chronic disease : sharing my asthma story“.  First off, I don’t like the term “chronic disease”.  The word “disease” makes me think of creepy crawly infectious diseases that are going to kill you.  And second I don’t like associating that term with myself.  I’m a healthy person.  I really am.  I’m lucky.  I spend the vast majority of my time not thinking about my health or feeling sick at all.  Hence the word “disease” is out since I don’t have any creepy crawlies.  And the word “chronic” is out since I spend most of my time feeling healthy.

Tho.. what’s the exact definition of “chronic”?  Can it also mean something that keeps coming back?  If so… okay fine.  I guess chronic is back in.  Then again, I spent about half an hour today hunched over doing body shaking coughs and taking a couple more puffs on an inhaler as a result of running in the cold this evening.  But hey, that’s normal, isn’t it?  That doesn’t bother me that much.  Tho this was my first (quite pathetic) run in two weeks, after an unscheduled hiatus due in part to my apparent inability to breathe like a human in winter weather, not that running in pouring rain and hail is all that great of any idea anyway.  Kerri expressed interest in me doing a post, and I don’t want to let my buddy down.  Tho I do feel a bit unoriginal writing about the same condition as has already been posted about.  Plus overall, I’m a pretty mild asthmatic, tho certain things – exercise included – will always be challenging for me.

Asthma is nothing new to me – I’ve been dealing with it since I was in fifth grade, back in 1996.  Pretty awkward age to get diagnosed with anything, but hey, everything’s awkward when you’re a tween.  And a teen.  Happy I never have to do those years again.  And at that point I was already pretty familiar with it since my little brother, who was six years younger than me, was asthmatic since birth and was a regular in the ER and did inhalers and nebulizer treatments at home.  That ended up being beneficial to me since (a) my parents were already pros and (b) I had his nebulizer available, which I attribute to my never having been in the ER myself.  Looking back at my middle school and high school years, I don’t remember asthma being a particularly huge deal.  I only have a few distinct memories of it really affecting my life throughout those years.  Carrying around asthma equipment in your school backpack is hugely awkward.  Actually using it is 100 times more awkward.  There were many instances where I had friends pleading with me to use my inhaler already when my breathing was clearly out of control but I insisted I was fine.  I think I even got kicked out of class once because my coughing was so loud and distracting.  In getting ready for gym I used to wait for all of the other girls to finish changing and leave the bathroom before I took my inhaler.  I think I did the same thing while I was on the volleyball team in high school.  Seventh grade gym class was interesting.  For probably the first and only time in history, the asthmatic kid was the teacher’s pet.  The teacher told me that her four year old daughter had just been diagnosed with asthma and she was going through the process of learning to properly cope with it and manage it.  She was extra nice to me and asked me questions now and then about asthma.  There was one time that year when I sat out on gym class because of asthma (I think I was getting over a cold then).  There was another girl who was also sitting out and she asked me what was wrong with me that I wasn’t participating.  I said “asthma”.  And she replied “Oh. I have asthma too. That’s not a reason to sit out of gym class.”  I don’t remember if I asked her why she happened to be sitting out that class.  Thinking… thinking… Oh, there was that time in volleyball when I guess I lost my inhaler and didn’t notice and suddenly one of the teachers was up in front of everyone waving my Ventolin asking whose it was.  I realized I was missing mine and had to go up and claim it, which I found to be highly embarrassing.  And… that’s it, I think, for schooltime asthma exercise memories.  School was a long time ago, man.

So anyway, fast forward to the present.  In an attempt to get in shape I swim once a week (which I’ve been doing for the past two years or so), do Zumba once a week (since January) and now I got it into my head to take up running (about two months ago).  In theory I’d like to be running twice a week.  I’m planning on running 10K in the Tel Aviv Marathon in March for a group of asthma awareness people.  I used to be good about running twice a week, but then the weather changed and whatnot and yeah.  In addition, I live four flights up with no elevator and don’t have a car.  So I spend a lot of time walking and going up and down stairs.

I’m not going to lie.  Exercising with asthma is hard.  And it’s frustrating.  The frustration is probably the worst part.  You take your inhalers like you’re supposed to.  Before exercise.  Sometimes during exercise.  Often after.  Sometimes you’re totally fine (I’d say about 50% of the time I’m totally fine).  Sometimes you cough your way through the exercise session.  Sometimes you’re fine during the exercise and fine right after and then an hour later you’re doubled up emitting these body shaking coughs.  And it all seems worth it (Okay it seems worth it to me.  Not to most of my real life asthmatic friends.  I guess they’re not masochists.) because you’re always improving.  Your speed is better.  Your endurance is better.  Your breathing often is better.  You get minor frustrations here and there about why you STILL get so out of breath in the pool after two years of regular swimming and changing up your meds, when you take them, etc.  But whatever.  Swimming makes you happy (okay, I don’t know about you.  I love swimming.  Even when it’s hard.)  You start believing in yourself and looking up asthmatic athlete forums online and reading articles and interviews with famous asthmatic athletes (How cute is this?) and then you get your period or a cold or the weather changes and suddenly you can’t even sit quietly on your couch in your house without the body shaking coughing and the breathlessness.  You take what seems like a billion inhaler breaks throughout the day and wonder how the hell you’ll be able to run in that damn Tel Aviv Marathon if you can’t even take a deep breath or laugh or yawn without setting off uncontrollable coughing.  I honestly don’t know how people with constant asthma symptoms deal with it.  My main coping mechanism is telling myself that it’ll be over soon.  Of course it will be back later, in weeks or months if I’m lucky.  But this specific episode will always be over soon.  Cuz things end.  Periods, colds, rain… it all ends.  And then I’ll be fine.  Back to my regularly scheduled breathing well, taking exercise and other things into account.  But those things don’t generally last long.  Or are particularly disabling.

The biggest frustration is the time lost.  Like now.  Missing two weeks of running doesn’t just keep your training from moving forward.  It actually moves you backwards.  You end up losing some of what you’ve gained and have to start all over again.  And I’m actually worried that something will happen and I won’t be able to run the 10K.  How do I know I’ll be okay specifically on that day?  Worst case scenario I can walk it.  The chances that I wouldn’t be able to even walk it are pretty slim.  But I really do want to run it.  Like really really.

I think for me at least, asthma serves as a driving force for getting in shape.  Some of my friends have pointed that out to me.  I tend to use it sometimes as a guilt card to get people to come to Zumba or to swimming with me.  Or to train for the marathon.  I say something along the lines of “I have an incurable lung disease (make it sound as pitiful as possible, eh?) and I do _______.  I have to take drugs in order to breathe well enough to do ____________ and I cough while I do it and I still do _______.”  Unfortunately for me, such tactic doesn’t work as well as I’d like it to.  A lot of times they’ll just say I’m nuts or if they’re smart, they’ll tell me that I exercise because I’m asthmatic.  Because I want to prove to myself – and others – that I can.  The first time I heard someone tell me that I was impressed.  I think there’s a lot of truth in that.

I hope this gives you some insight into what it’s like to be an asthmatic athlete (even tho there have been a couple before me already).  I’d really like to read what it’s like to exercise with other conditions and what kinds of things you have to take into account and what your feelings about the whole thing are.  Kerri – I know you have friends with diabetes who read this.  And people with other stuff too.  Also, Kerri thanks for coming up with the topic.  Challenge accepted.

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Thanks for sharing, Elisheva, and best of luck with your race!  I can’t wait to hear about the rest of your training and read the race report.

Elisheva lives in Jerusalem and blogs at Ramblings of an Occasionally Oxygen Deprived Mind about whatever strikes her–whether it’s asthma and exercise or the situation in the Middle East, posting recipes to her favourite dishes, or general updates about what she’s up to.  She loves coffee, beef and chocolate, is currently on a muffin baking kick (sometimes making me want to get on a plane to Israel to share!) and exploring her community.  She’s also mom to a hamster named Boten [which translates to “peanut”–awwww].