A question that gets thrown around frequently in the Diabetes Online Community [or DOC] is that of “What does a low blood sugar feel like?” My friend Jamie lives in the Toronto area, and has been living with type 1 diabetes for over twenty years. Jamie is also on the Chronic Roadtrip planning team, and we have had several amazing Skype and Twitter conversations on advocacy. Today, I’m thankful to have Jamie here sharing another bit of her creative diabetes advocacy (like her whiteboard at work, which I love!) as she shares yet another perspective on living with an invisible illness with a creatively written post! Thanks Jamie!

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You sit next to her on the train every day. She is a lovely woman who chats about her day, and you chat about yours.

She shares her hopes for a promotion. She talks about the sweater she almost bought but couldn’t bear to pay an outrageous fortune for it. She complains about the fight she had with her cell phone provider. She listens to you as you banter on about your workday.

Then she falls silent. She opens her purse and rummages through it. You close your eyes – it’s been a long day.

Then you feel a tap on your knee. You open your eyes and she’s looking a little flushed, and asks you if you happen to have any candy. You do, and hand her a crumpled bag of Skittles that has been lurking in the bottom of your purse. She looks relieved. She tears open the bag and eats them, then leans back in her seat and closes her eyes.

After some time passes, she perks up again and continues her banter about her daughter’s new job, and about the fact that her vacation is only “5 more sleeps”.

Pretty normal stuff. Right?

What you don’t hear is her internal conversation. To outsiders it would sound like a foreign language. It is a stream of consciousness, a constant underlying hum in her brain.

Am I high? No, it’s a low. Crap. Did remember to I stick my kit in my purse before I left? I don’t know. Can’t remember. I did. Ok. Test. Why do they make those stupid strips so tiny and they stick together. Did I bolus too much for that cookie? It was 3 hours after I had lunch. Maybe it was too soon to bolus. My pump said I didn’t have any IOB. Crap. I feel low – 3.1. Crap. I AM low. Where are my lifesavers? Stupid me. Stupid black hole in my purse. Why won’t my fingers work? Maybe she’s got something. She’s sleeping! Should I wake her? I’m soooo hot. Why don’t they turn on the air conditioning in here? I don’t know. YES!! Just tap her on the knee. She won’t mind, right? Thank goodness. Thank you! I wish I had a drink. I HATE cottonmouth.

This is the face of a person with Type 1 diabetes (aka Juvenile Diabetes, Diabetes Mellitus). This is the face of an invisible illness.

Type 1 diabetes requires constant management and frequent interaction. Blood sugar needs to be tested 8-10 times a day – sometimes more. Many inject insulin several times a day. Others use insulin pumps which pump insulin constantly, but it doesn’t end there. No matter which method, people with diabetes must count carbs for everything they eat, and get it right. They must add (or bolus) extra insulin – and get it right, for even a small error can cause a “low” or “high” blood sugar which must be dealt with by adding more insulin when blood sugars are higher than they should be, or have some “fast sugar” to counteract a low, which can lead to many physical symptoms – anything from sweating, confusion and even loss of consciousness.

These are some of the immediate issues that must be considered before any worries about complications we’ve all heard about, like kidney failure or blindness. Of course, people with diabetes worry about these things too, but it is so much more than that. The management is constant. The worrying is constant. The inside monologue is constant.

There are no breaks. The internal conversation does not rest. This is the hidden illness of diabetes.

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Jamie lives with her husband Larry, and is an advocate for both diabetes and accessibility awareness. In addition to three kitties and a dog, a member of the “furball” part of Jamie and Larry’s family is Keeta, Larry’s guide dog–accessibility for people who are blind is a big part of what Jamie advocates for!  Jamie enjoys reading blogs and collecting stories in InkStain’D, . You can find Jamie on twitter at @InkStain_D and her blog at Flying Furballs!

My friend James and I connected several years ago because of our asthma, and our desire to be physically active in spite of our lungs–we have also had some good talks on spirituality and religion and our past and current struggles within each. In the more recent past, James has been diagnosed with major depressive disorder, borderline personality disorder and autism, and has become a mental health advocate as part of his journey in healing. I am grateful to have him sharing the raw and real story of one recent experience in particular.

Today is Suicide Awareness Day. Coincidentally and unfortunately, James touches on this subject within his guest post. This post may be triggering if you are experiencing depression or thoughts of suicide. Please seek help immediately by visiting your local emergency room or by finding a suicide/crisis hotline in your area.

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When I think of an invisible illness, I think of people suffering from physical ailments. I think of those in severe pain or those having troubles taking a breath. I think of those illnesses that are so debilitating that a person has to rely on mobility devices. There are so many invisible illnesses out there and the incredible people who suffer through them, I just can’t begin to spotlight them in this post.

I can spotlight at least one that my wife suffers though, Psoriatic Arthritis. All I can say is this is an awful illness. On damp days my wife can’t get out of bed because it hurts to move. That is not even half of what that disease does to a person. Psoriasis takes over and makes a mess out of everything. My wife’s ears and forehead is over run by psoriasis. I feel bad for her because she feels so unattractive. I wish there was something I can do but there isn’t. In a way my wife’s illness is visible but the pain is not. She is a brave women and toughs it out everyday. This is just one of those incredible people out there.

I am not without a couple of chronic physical illness myself, asthma and Paget’s disease. However, I am not going to write about those diseases.

I am going to talk about an illness that is not physical. In some ways, it is not discussed much because the majority is afraid of it. Plus, from my observation, there is a stigma running rampant for those who just don’t understand. What is this illness? Depression.

See, I have clinical depression or being more technical, major depressive disorder. Yes, I know everyone has had some sort of bout with depression. What is the difference between clinical depression and the average depression most people feel? Usually, when some one is feeling depressed, they snap out of it in a few days, mostly because they are just sad about something. Clinical depression is nothing like that. I can only speak for myself on this, but the sadness is way more intense and it doesn’t leave my thoughts after a couple of days, sometimes not even a couple of weeks. Lately, to be honest, not even a couple of months.

I think to be diagnosed with major depressive disorder; a person has to have had multiple attempts at suicide. That is what I believe my doctor told me anyway. Yes folks, I have attempted numerous times to end my life. Thank goodness, failing in all attempts. I told a counselor once that I am so bad at suicide. I am just going to quite trying. She couldn’t help but snicker a tiny bit and told me my since of humor was still around.

Sadly, there has been a recent attempt. I thought maybe I would share that with you so you can get a real example of my life.

My personal life is a mess. To be honest, I am not sure anyone would come out unscathed from what I am dealing with. There was a blow-up at home that sent my mood spiraling downwards. I have been through quite a bit of therapy, so I have some idea how to combat major down turns in my mood. Unfortunately, this one caught me a tad off guard.

Exercise is a big part of my therapy. It really works to improve my mood. With that said, I started getting back into cycling. I used to love cycling when I was young. Even today, I love it a lot. So, by the third day, my mood had plummeted to dangerous levels. At this level, escape is a must. I decided to jump on the bike to ride off the sadness. Little did I know at the time, I was going to hurt myself.

I started riding mid afternoon on a roasting hot day. So hot that salt crystals formed on my skin surface. That normally does not happen when I ride. I had it in my mind that I was going to push it to the max, and I did. The whole time I didn’t realize that I was not taking care of myself. I should have calculated my water stops and electrolyte loading a tad better. What did I end up doing? I ended up riding myself into heat exhaustion. Worst part, I was out in the middle of no were with no shade or water. I was so disoriented that I missed my route turns and couldn’t use the map on my iPhone to save my life. So, I figured enough was enough. I found some shade from a row of corn and tried to get my bearings. I should have called my wife but the only thing I could think was calling 911, so that’s who I called.

I was transported to the emergency room and put through a full psychiatric evaluation. Actually, no big deal now days, I’ve been through it a few. I was a prospect for hospitalization but my doctor thought it was a bad idea. Therapy was going to be more effective for me and I wouldn’t get that at the hospital. The only thing the hospital could do for me is keep me safe.

On that note, if anyone is considering self-harm: Please seek help by going to an emergency room near you. They can really help you, even though you might feel that nothing can fix you. Been there and I got the help I needed, it works.

But I digress.

It is possible that the day in question was not really a suicide attempt, but in reality me disregarding all my training in warm weather. It was just too hot of a day and I was just asking to get sick. Yes, that is possible. Frankly, I have rode and walked in these conditions numerous times without much trouble. Plus, I was only 33 miles into a 50 mile ride. I did a 64 mile ride 6 days earlier. This ride should have gone off with little trouble. Like I said, I wasn’t in the right frame of mind and not doing what was needed to have a successful training ride.

To be brutally honest, I am not sure I am the kind of person that could put a noose around my neck. I have always tried things in hopes that death was the final outcome. Thankfully there still is a part of me that believes in self-preservation.

So, that is a taste of what it’s like to have clinical depression. Is there hope? I can’t answer that question all the time, but I do believe that there is. Unfortunately, this disorder is kept invisible by stigma and it is very hard to recovery in secrecy. I know all about that. No one knows I have this disorder, except manage at work and selective family members. Everyone around me would rather I keep my trap shut. So, not only is depression an invisible illness but for many of us, a forced one.

Maybe in the future through advocacy, we can stamp out stigma and make the world a better place to recover from mental illness. That is my hope anyway.

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Thank you, James, for sharing your story! I can say that you have opened my eyes with this post, and hope that those reading have gained a deeper understanding of what it is like to live with mental health problems and that, one step at at a time, we are helping to decrease the stigma around living with mental illness.

James is a cyclist and endurance walker who has completed several marathons. He lives with his wife and two boys, and in addition to work, is involved with a variety of communities on Twitter helping to support people living with mental illness, autism, asthma and Paget’s disease, and helping to educate those who don’t. James can be found on Twitter at @JamesofRC, and through his blog, Religiously Challenged.

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!

When encouraging people towards living more active lives, I always try to stress that there is NO positive change that is “too small”!  I find people really minimize their accomplishments if they are starting slowly, and this is really unfortunate because small steps can lead to big change AND show others that anything is possible . . . and everybody has to start somewhere!

Today, my friend Clare from the UK [who uses all kinds of UKisms. I am a fan] shares her story of her journey with severe asthma and a downward spiral of negative choices with profound negative impact on her health . . . and her recovery.  Her recovery lead to the motivation she has found to keep moving forward with exercise following rehabilitation for steroid-induced myopathy [extreme muscle weakness/wasting]–her dog, Pip, and a marked improvement in her asthma!  Her journey began through walking: an activity that seems deceivingly simple . . . and has helped her go farther than she’d ever dreamed!

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clare%25201.jpgI have had asthma since I was small. I am now 27 and I’d love to say it hasn’t had an impact on my life at all but it’s basically dictated most of my life.

From a young age as well as asthma attacks I also had epileptic seizures frequently. I always had an inhaler on or around me and relatives also had inhalers kept at their houses for when I stayed. One of my earliest memories from childhood is not a happy one playing, it’s of me sitting in my buggy unable to breathe, my mum giving me ventolin syrup and yucky intal. Most memories seem to involve a time of fun times being cut short by an asthma attack or epileptic seizure. Apart from that I was quite a normal little girl!

I had lots of time off school. In my last year of primary school I had 6 months off school for repeated pneumonias and lung collapses that left me very ill in hospital. After that episode every cold or viral infection had me ending up in hospital. The attacks just got worse and worse, I began to need more and more drugs to control them and was often hooked up to IVS for a long time. At the age of 10 my consultant decided a home nebuliser was the only way forward. It didn’t help really just made me more reluctant to go to hospital. I could have nebulised steroids via it but that didn’t really help much. All through my teens it continued with me ending up in hospital every few weeks/months with a bad attack. My epileptic seizures had thankfully stopped so I was glad of a reprieve from them.

I just wanted to be like my friends and at the age of 15 rebelled big style. I tried smoking and would regularly get drunk on a school night and sometimes joined my friends in smoking weed staying out till all hours. I continued to have regular attacks, and in between my asthma never let up—I was constantly attached to my neb but hated to say I was feeling ill, so I’d wait until I could take no more before reluctantly asking my mum for help, I just hated the attention. One day just after I had started my last year in senior school I woke up having an attack, what was different was this one came on so quick, and within minutes of the ambulance crew arriving I was unconscious and had stopped breathing, my heart slowed down . . . if it wasn’t for the prompt action from the crew I’d probably gone into full cardiac arrest. When I woke up I was on a ventilator in ITU [editor’s note: this is what our friends across the pond call the intensive care unit].

I was in hospital for a month recovering, I was so scared at first to go home and that it would happen again that I kept making excuses not to go home, eventually they realised and I was able to talk through what had gone on and any worries I had. I wasn’t home long within 2 weeks I was back in hospital with a very bad attack that needed very high amounts of steroids, it lasted a long time and I was in bed for 2 weeks. That coupled with the high amount of steroids gave me steroid myopathy. I couldn’t walk at all it was quite scary, I went to get up after being in bed for so long and my legs just could not take my weight, they wouldn’t do what I wanted them to do. I had various neuro tests and finally an EMG revealed very weak and wasted muscles in my legs. I had intensive physio, at first I could only stand up straight using a special standing frame with the physio, we then after weeks of hard work moved on a rolator frame, basically a Zimmer frame. I couldn’t go home as we had too many stairs and I was too weak. I had missed so much school it was decided I’d fall back a year so whilst in hospital I started to attend a special school for people with problems. To cut a long story short I was in hospital for 6 months having physiotherapy. It was very strange being back home after so long! Due to the myopathy, for a while the doctors were reluctant to give me any oral steroids, if I needed them they would just hit me with tons of reliever and IV aminophylline.

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I finally left school aged 18, college wasn’t for me trying to be independent I moved out of home aged 19, I hated the fuss. I got a job as a care assistant, my long term goal was to become a nurse. I worked for 2 and a half years, struggling into work every day. I did have a bit of a reprieve from the life threatening attacks for about a year, no hospital admissions for a year! It didn’t last long, work understood when I was poorly I’d be off for quite some time. Then in February 2005 an attack that didn’t get better, all IV drugs failed I was getting worse they took me to ITU and I had to be put on a ventilator again. My family were told to prepare for the worst. After 10 days ventilated I pulled through, recovery was tough. I was in hospital for 6 weeks. I couldn’t return to work, just getting out of bed left me gasping for breath.

I got depressed not being able to work, I piled on the weight. The longer I was off the more scared I got, the more depressed I got, I lost all confidence and hated going out. I used a mobility scooter when I was brave enough to venture outside. Asthma did that to me! Still in and out of hospital the doctors didn’t know what to do with me. For 3 years I was a recluse, the safety of my flat was comforting. I stopped taking some of my medication, what was the point it didn’t seem to help. Around this time I also found Asthma UK, I thought I was alone in my suffering, suddenly I found all these people going through the same! In September 2008 I was in hospital on IV drugs so long and unable to get off them without getting poorly again, I was started on sub cutaneous Bricanyl. 4 months in hospital with 2 weeks at home. I was now attached to a syringe driver 24/7 but once I was home and had recovered for the first time in years I felt better!

My symptoms had improved; I could walk again without gasping for breath and needing a nebuliser. Feeling better I also sought help for my depression,

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finally revealing how down I felt. I was put on anti-depressants and within months I was slowly feeling like my normal happy self. I enrolled on an Open University course, went on a diet and started doing some gentle exercise. I got a dog and he helped me with my recovery. I had to go out to walk him! The walks got further and further, the weight was dropping off and I didn’t have a hospital admission for 9 months. Unfortunately a cold turned into a nasty attack whilst on holiday in Scotland, I was very poorly in ITU. I recovered quickly and was soon back to walking and losing weight.

2 years on I have lost 7 stone [editor’s note: 98 lbs! GO CLARE!] and have completed 2 open uni courses. It’s been over 6 years since I had to give up work and now I finally feel ready to get back out there! I’ve been told not to rush things, so I’m not. I am currently looking for work but have a voluntary job 2 days a week at my favourite charity, Asthma UK! I love it and am learning so much. It’s been a great way to ease me slowly back into the world of work. I exercise regularly now, I walk 3 miles every day and am constantly out and about doing something, a total opposite to my once reclusive self, who would sit and watch TV all day eating rubbish food hiding from the world. I don’t even have a TV any more—who needs one when there’s so much of the world to see and more interesting things going on! If I’m bored I’ll go for a walk. I love exercise now! I wouldn’t have said that a few years ago, I would do anything to avoid any form of it! I know my weight and lack of exercise didn’t help my asthma, I’m determined not to get like that again.

Thanks to the right treatment and regular exercise for the first time ever I feel like asthma is not dictating my life. I still require a large amount of medication and have daily symptoms my lung function is still only 60%, to some I might not appear controlled but for me this is the best I have ever felt. I have had some admissions but they are not as bad and I seem to recover more quickly. My last one was Christmas 2010. I had not been in hospital for 6 months and was on a roll, the week before Christmas I got a nasty chest infection and had to spend Christmas in hospital. Not the first time! And now I’m whole year out of hospital! A little lie there I had a brief admission to get off my subcut Bricanyl in August, which went very smoothly and I am now line free!

Who knows what the future holds but while I’m enjoying this spell of good health I’m determined to make the most of it!

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Thanks for sharing, Clare!

Clare’s story has also been featured in That’s Life! magazine.  Clare lives in the UK with her dog, Pip, and is studying Health and Social Care with the Open University.  She is a volunteer with Asthma UK, the UK’s leading non-profit benefiting people living with asthma.  Clare blogs at Clarebear’s World, sharing her story of getting back to work, fitness, school, asthma, fun stuff, and life!  You can also find her on Twitter.

[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!

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 2013I 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.

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!]