“a journey of empowerment, hope and love.” – jeff’s story on type 1 diabetes

Jeff Neitzel and I connected on Twitter within the last couple of months. Jeff and I have a shared love for taking our chronic disease journeys as they come and maintaining a [perhaps sometimes annoyingly-so] positive perspective on life with invisible illness. Most times when you ask Jeff how he is doing, the answer is atypical but one I love: “Shiny” :] (He’s also taken to my use of square bracket smileys, which makes me smile!).

Jeff graciously agreed to write a blog post about some defining moments in his Type 1 diabetes journey, and I am thankful for his willingness to share candidly some defining points from the travel map behind him in his type 1 diabetes journey of 28 years . . . and counting!

—–

janeitzel-2012.jpg

Thank you very much, Kerri.  Your asking me to write this has helped me rediscover valuable memories that I might have otherwise forgotten.  I’m truly grateful.

Intro

For the record, I was diagnosed with Type 1 Diabetes on Tuesday, March 6, 1984 in Mooresville, IN, USA.  I was 13 years old at the time.  Fortunately, I have an older sister who diagnosed years before. So, my mother and I knew what was going on before we ever went to the doctor on that particular Tuesday.  If I may, let me tell you that I am a lucky man.  I doubt I’d be where I am today without the help of so many great people over the years.

My diabetes is a friend who has given me a lot over the years.  I truly count it as a blessing in disguise.  See, my diabetes and I are on a journey together.  In many ways, this is a journey without a predefined destination.  It is a journey of empowerment, hope, and love.

I guess you could say…  It’s not so much about the where I go but how I choose to get there.  The journey itself is the destination.  Are we there yet?  No, not yet.

Michigan

Now, I’ve said it before…  My diabetes life has been nothing short of a whirlwind.  The memories I have of my early diabetes days are pretty vague.  There are those events that are unforgettable though.  Here is one of them.

The only diabetes camps I remember going to were bicycle trip camps that were organized (in part) by Sam, my diabetes doctor.  They were both trips around Michigan with a ride across the Mackinac Bridge and a break day at Mackinac Island on one of them.

The riding and camping during these days was exciting, fun, and full of learning.  To this day, I still remember my most important take away from all this–and that is . . .

Don’t hide your diabetes.  It doesn’t have to be invisible.  Be proud of it because it’s part of you.  The visual take away in my mind is symbolized by all of us outside a shop on Mackinac Island checking our blood sugars, taking our shots, and all that other fun diabetes stuff.  Yes, people could see this bunch of kids with diabetes doing our thing and having fun while doing it.  Unfortunately, I don’t have any photos of this.  Alas, it is still a vivid and important point of diabetes empowerment for me.  I’ll carry it with me always.

Indiana and College

I don’t want to bore anybody with details of my first go at college stuff.  So, let’s just say that it was an interesting challenge not just for me but for my family as well.

There are a couple tidbits that are worth sharing in any case.  One is…  I wouldn’t recommend getting low in public, in your residence, or in your class(es).  My mom and my doctor had to make the college see the light on one occasion to stop them from kicking me out for getting low.

The other is…  In retrospect, I know now that I was dealing with depression at the moment in time when I jumped off the college ship.  See, I had a revelation back then that I wasn’t going to be around forever.  Rather than learning about the world from books, I decided it was time to leave and forge my own path in the world by just doing it.

It probably wasn’t the best decision in the grand scheme of things, but it was required for me at the time.  I’m a better person for it today.

JANeitzel4-TheRails.jpg
Boston and Beyond

Now, college was worthwhile for sure.  I’d return to complete my degree eventually.

My Boston years (from about 1994 to 2000) though…  They changed me absolutely in more ways than I can possibly convey here now.  Without going into the day-to-day of my life in Boston or the work I did there, I will say that it centering myself around this amazing city is one of the best decisions I’ve made in my life (to date that is).

The thing that was/is most valuable to me about Boston is the amazing friends I made while I was there.  Even though I’ve lost contact with many of them, there are a few people I still know from those days.

For the most part, Boston served as a jumping off point for my travelling via train, plane, bus, and bicycle.  This included trips to various parts of Europe, to Canada, and across the USA on at least two different occasions.


JANeitzel1-AmtrakDerail.jpgOne example I’d like to share is one of a train derailment.  Having ridden my bicycle from Boston, MA to Albany, NY (summer 1994), I then caught the Lake Shore Limited bound for Chicago.  Long story short, the train derailed near Batavia, NY on the way to Buffalo.  102 people were injured, but I wasn’t one of them.  Regardless, this was just another example to me of why it is so important to appreciate what we have in this world.  I’m not talking about material possessions either. I mean the power of the connections among people. I met so many fascinating people that day. People who were different from me but like me.  Knowing that we are all connected in one way or another despite our differences is so important to me.  That day just illustrated in a very powerful way.

So, where was diabetes during these travels?  It was right there with me every step of the way.  This whole span of my life was about much more than diabetes though.  It was about my love of people, geography, and cities.  Diabetes was there as my companion, not always the most cooperative companion mind you.  Still, diabetes made and still makes my adventure more fulfilling in more ways than I know how to say.

It simply allows me to appreciate more than I might otherwise be willing to appreciate if you get my meaning.  Things are just shinier for me when they’re good.  It’s the blessing in disguise thing ya know.

JANeitzel3-CyclopsBoy.jpgConclusion

In my mind, it’s all about the journey and connecting the dots of my life with those of others.  So far, I’ve gone from Indiana to Boston, Beyond, and back again.  I’m not there yet.  Diabetes will not stop me.  So, my journey continues.

Diabetes is a journey with many facets.  Those facets include the mental, the physical, and the spiritual for me.  It is a difficult journey for sure, and I’m not always so shiny.  That said, we (my diabetes and I) try to get up every single day and embrace the imperfection of it all.  Sure, we fail sometimes.  That’s life though in my estimation.

Anyway, we choose to keep on moving…  Are we there yet?  No, not yet.

—–

Jeff blogs at Betespora, an engaging chronicle of his “D-Quest”, reflections and some philosophizing thrown in for good measure–I can’t speak for others, but in my journey reading back, it constantly challenged me to question myself and my world . . . and DO something good! I haven’t been following Jeff’s blog for long, but it quickly became among my favourites out there.

Jeff has a degree in Information Systems and has special interest in Open Source programming working [and speaking in what I am convinced is a foreign language!] on the v6shell project :]. Jeff can also be found on Twitter at @betespora and @v6shell.

“’round here” – morgan’s story on congenital heart disease and asthma

Morgan and I have been friends online since at least my first year of university (which started in 2009 . . . also making me feel like I will never get out of there :]). Between Morgan and I, we have a few shared diagnoses (asthma, anemia and congenital heart defects), but completely different experiences within each of them. We’ve had many long IM discussions late at night when things weren’t going so great, shared many songs due to our mutual interest in picking apart amazing lyrics, offered each other support and advice at times we really needed it, and shared our triumphs with each other. She was a great source of information for me when I was struggling to navigate the oddities of my own asthma, and shared her knowledge from the perspective of not only a Respiratory Therapist, but a patient.

I’m thankful to share some of Morgan’s perspective here today, in a post that truly captures the essence of many of the pieces of the puzzle of not only the chronic disease stories, but also the very things that brought us to become friends in the first place!  Thanks for sharing, Morgan!

—–

One thing thats hard about Congenital Heart Disease, Arrhythmias, Anemia, Asthma, and GERD is that they are “silent” diseases. No one really knows you have them unless they pick out the little clues: the scar, the exhaustion, the deep breath and stopping in your tracks to catch your breath when your heart is pounding out of your chest, the inhaler, the posture you take when you arent breathing so hot. This makes it hard for others to understand what its like to deal with. No one really “gets it” when you are having a bad day. People can’t fathom what living with chronic illness is like because they cant quantify it or qualify it.

One of my favorite coping mechanisms for life in general is listening to music; I love music in general, but one day I was in a rough place mentally (actually, I was dealing with preparing for a difficult procedure), and I heard one of my favorite songs in a WHOLE new light. It has changed my view on things as well as helping me get a better grasp on what it’s like to live with and grow up with chronic and invisible illness. It has also given me an easier way to explain things to others in a more tangible way. (its amazing what a little perspective will give you) The song is “Round Here” by the Counting Crows, and parts of the song really hit home…

“Step out the front door like a ghost
into the fog where no one notices
the contrast of white on white.”

When you have an invisible chronic illness going on no one gets it: the only indication is the scar, inhaler, etc It’s not tangible to the outside world, vecause its not visible, therefore, its hard to quantify.

“I walk in the air between the rain
through myself and back again
Where? I don’t know.”

While I’m doing my daily routine, especially when I am having a rough day I’m “in my head” alot trying to deal with the mental/emotional part of living with chronic/invisible illnesses, I’m putting a face on to just get by. It hardly ever gets me anywheres, but its definitely a journey mentally and physically.

“Round here we always stand up straight
Round here something radiates”

Again, a picture of normalcy, busy doing day to day things, conforming to the norm and trying to give off positive vibes, because if you arent positive, people around you tend to feel sorry for you.

“Round here we’re carving out our names
Round here we all look the same
Round here we talk just like lions
But we sacrifice like lambs”

back then I was busy at school and work trying to continue with the semester, trying to prepare for the procedure I was going to have mentally, and getting ready to take my boards; now I’m day to day at work trying to become the best I can be trying to make a living. I look no different than any of my classmates and co-workers, and therefore I am no different in most peoples eyes. It’s hard to be understood when your symptoms aren’t visible. If symptoms were visible, I’d have a hell of a lot of “well, why are you still trying to work” comments. My co-workers may understand clinically some of what I am dealing with, they know what SVT or Ventricular Bigeminy looks like, they’ve had patient’s who were short of breath but they don’t get it, they don’t know how it feels, they don’t see how it applies to day to day life, and how it affects my performance and my ability to work. I go to work every day, I advocate for my patients’ best interests. I try my hardest to be the best I can be, but sometimes I just cant be that all the time; sometimes I just need to break down and cry.

“Round here hey man we got lots of time
Round here we’re never sent to bed early
and nobody makes us wait
Round here we stay up very, very, very, very late”

Chronic illness can make you feel alone at times, especially when its silent, this lyric represents to me feeling alone in the work environment, but it also represents me feeling alone in having to take over my healthcare no one’s running that show any more. I have had to learn to advocate for myself, I’ve had to learn the in’s and out’s of whats going on with my body and how to deal with it. No one’s going to be there to tell me to take my meds, or when to go to the doctors, but on the other side of that, I’m the one who has to buck up and deal with the consequences when I’ve forgotten my meds, or missed appointments, or not gotten to the doctors when things aren’t right.

“See I’m under the gun round here
Oh man I said I’m under the gun round here
and I can’t see nothing, nothing round here.”

I’m under alot of pressure day to day, needless to say, sometimes it’s hard to get perspective, sometimes its hard to see the forest for the trees, but sometimes it helps alot when I’m not feeling well to be really busy, because I can put my head down and just get it done, but that can lead to not taking care of myself, forgetting to take meds, not getting enough sleep, not listening to my body, etc

It’s amazing how preparing for a big undertaking medically can put you in a frame of mind to see things differently. It’s also amazing how your mind can give you a perspective like this to help you through a tough time. To this day I listen to this song, and it speaks to me.

I think the key to living with chronic and invisible illnesses and living well with them is to find coping mechanisms, to reach out and connect with those who you can relate to. Listen to music, have fun, listen to your body, and most of all: Live life!!! Life has strange ways of teaching us lessons, all we have to do is be open and receptive to them. This is one of the biggest life lessons I have learned so far

“One Life, One World, One Chance, and I Don’t Wanna Wait, Wait!!!”

Morgan lives in Vermont and works as a Respiratory Therapist, where she is able to apply both her clinical skills and understanding of the patient perspective to those she helps on a daily basis. She loves music (as evidenced above!), coffee, cycling, cooking and spending time with family and friends. Currently, she and her fiancé are also busy preparing for their wedding in October 2013–congratulations, Morgan!! :]

low monologuing – jamie’s story on type 1 diabetes

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!

—–

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.

—–

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!

“is there hope? i do believe there is” – james’ story on major depressive disorder

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.

—–

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.

—–

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.