Running a 1/2 Marathon with T1D (and other things)

So I did a thing- I ran a 1/2 marathon (well my second- but I really don’t count the first because that was just chaos and a crap show- full into my thyroiditis and exercise was painful- I was also not prepared).

This also needs a disclaimer- please remember I am NOT a medical professional. Please do not just make changes before talking with your Diabetes care team- I spent time working with them. I’m not saying what is or what is not right for you (because everyone is different and has different preferences). Different things work for different people. Please do not take this post as medical advice- I’m sharing my experiences based off of all of the questions I have gotten regarding my experience- Thanks!:)

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At this point last fall- around October 2015- I had been trying to get to a disney race for over 4 years. Something had always come up- either my health or my financial situation. Now that I was out of college, I would be going to a Disney race. I get online, and the Disney World ones were already sold out- so I decided to look at the Disneyland Races- and there it was the Tinkerbell 1/2 Marathon- I thought why not- I looked up flight costs- basically the same as going to Florida to Boston- so I decided hello vacation!

A few questions and stubborn thoughts went through my head- what would it be like to properly train and run this unlike the first time? How do I not have to constantly eat because of the diabetes? Etc etc.

 

First the doctor reminded me, anyone running needs to refuel their body regardless if they have T1D or not- I hadn’t really thought about that.

Then I shared my dislike of glucose tablets and it being hard to chew during a run. He introduced me to Clif Shot Energy Gel- my new favorite low treatment for working out and for while I’m on the go.

 

 

I did research and such online, but friends and my healthcare team were a great resource to prepare!

I was on my way to get really started with my training a few months later. For my usual runs- I already do 3-5 miles so it would be moving from there.

I made sure to include yoga, proper stretching, proper warm-up and cool-down, and strength training- which are already a part of my routines, but I made sure to be really on top of it.

I gave myself over 3 months for training. To factor in travel, getting sick, and my periods being a pain. (plus sometimes I can be a little lazy)

I introduced an extra mile each week and did a long(er) run twice per week. For each week- I aimed for 2 long(er) runs, 2 short runs with strength training, a day of yoga, and 2 rest days. Of course this didn’t always happen.

I was told that I just needed to get to 9 miles for training- but I wanted to know what my asthma and T1D would do with 13.1.

Side note- I aim to workout in the morning. Less factors with the diabetes plus I lose all motivation after the AM.

Oh- and what is my motivation? Beer and food. I literally have tanks that say that. I’ve gotten asked what my motivation is and how do I get out of bed to workout- sometimes I don’t. I press snooze and go “nah” another day. I know the overall benefits for my health and mental health, but again for me- it’s all about craft beer and food. I also really enjoy watching the sun rise over Boston- specifically the Esplanade- so that’s helpful.

During my training and specific distance- this is what I learned.

  • I need to use my inhaler 30 minutes before I start my run, right before, 1 hour in, and 2 hours in.
  • I eat breakfast like usual.
  • During my walking warm-up I go to 70% of my basal.
  • Once I start running I go to 30% of my basal.
  • 10 minutes into my run, I go to 0%, BUT
  • I time my basal to my pace and distance. If I am running over 6 miles- I make sure that my basal goes back to normal around mile 5 and 1/2. Because without fail no matter what I do, I would spike from miles 6-9 (sometimes I might even give insulin based off of my blood sugar).
  • After mile 2, I start to sprint every mile because it uses different muscles so it helps with lows. I only do this if I am doing over 4 miles.
  • Around mile 4, I take an energy gel shot so I don’t go low.
  • Now you might ask- why do that and sprint and then change the basal- for me- I’ll go low if I don’t do something and then still go high. So I need to do both.
  • Around mile 9, I change my basal again to 70%. Depending on where I am, I might do a little bit less.
  • At mile 10, I usually have another energy gel shot.
  • After the run, I cut off my basals for 30 minutes.
  • For the rest of the day, I have my basals around 80%.

For yoga- my basal is around 30% the entire time. For strength training- I usually follow it with a short run so I don’t do anything because for me they balance each other out.

Other “side notes”

  • I did contact my endo when I couldn’t figure something out.
  • This is the main reason I like the CGM.

Day of the race I learned:

  • Have a kick ass running playlist.🙂
  • Chaffing is rough- praise vaseline- (not just the chub rub life- but also for any place that might rub together- like my arms).
  • Running fanny packs and or other tools are your friend.
  • Dress up if that is how the race is.
  • Treat yourself afterwards🙂
  • Moisturize your feet!!!!! My poor feet…
  • Sunscreen is your cool and good for your health.
  • The adrenaline helps with the blood sugars (for once). I stayed around the low 200s the entire race.
  • I only had about 24 carbs and barely changed my basal- which I attribute to the adrenaline.
  • Make sure you do your usual foods and plans.
  • Know that how trained will of course help, but keep in mind it won’t go just like you trained so be ready.
  • You’ll actually learn that you are serious runner if you thought you weren’t.
  • Get plenty of sleep.
  • Have less factors to impact your BG- start this 24 hours before. (So I opted to not go visit a local brewery the day before- especially because my BG’s had been rough the night before)

 

 

So then I got a thing- a medal because I’m a “Champion with Diabetes”

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Shout out to Stephen for sending me this and for Kim recommending me for it.❤ It actually meant a lot to be thought of- especially because I don’t exactly identify as an athlete. (This post and shout-out- LONG over due)

 

I am so happy that I finally got to do a Disney race- here’s to more 1/2 marathons and maybe even a full one some day. The best part for me wasn’t finishing or the training or that my body actually cooperated. The best part was that I felt so accomplished that I made this happen- just me (not including help I got in figuring things out). I felt accomplished because it was something for me to be proud of that was a very personal thing- especially because I had wanted to do a Disney Race for SO long, and something always came up that was out of my control. I definitely live by the notion you should never get up and (try) to not let anything stop you- but that doesn’t mean you might not need or have to figure out a different plan or hold off for a bit- that’s not giving up or letting something stop- that’s being realistic and flexible. Goals don’t have to change (sometimes they do which is fine), but the process should and always will be up for discussion.

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Another Journey Begins- Diabetes and PCOS

Disclaimer- again- I am not a medical professional and this is not advice. Also- I did try to be as respectful as possible even with my blood boiling. There are some amazing healthcare providers out there- and kickass women with or without diabetes that are amazing moms (some diabadass moms too) or who want to get pregnant. But remember there are also some not so great providers and not everyone can have kids and not everyone wants kids.

If you’ve seen any of my posts on facebook or twitter, you’ll have seen my “rants” about what’s been going on recently in terms of my health- I’m just a big bag of fun…. Getting ready for a long ranting post-

But when I posted on facebook- I saw so many me too’s- but finding these me too’s on the general internet has not been as fruitful in my searching attempts. 

 

I started having some awesome problems with my period….  Again……… I went into the doctor hoping for a “stronger” script to help with this. I’ve been exhausted and my BGs have been everywhere, etc. Then hello- period is two weeks early- and it’s still happening as we speak…

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Cool.

Well then after a work-up and everything- the doctor goes- well I’m pretty sure it’s PCOS (Polycystic Ovary Syndrome).

 

Then she calls me later that day (as many of us know- same day calls often raise anxiety levels)- and she tells me- my thyroid is off too, but she’s pretty certain it’s both (something with my thyroid and PCOS) based off my symptoms and initial blood work. I need to get to the appropriate doctors ASAP.

 

Let’s back-up- I DON’T HAVE AN ENDO RIGHT NOW basically. I’m switching again (the newest endo I found, left….) and haven’t even had an appointment yet. But I contacted her- and she’s been awesome. She looked at my initial blood work-

 

So it’s either thyroiditis again or sub-clinical hyperthyroidism. For right now- we’ll be doing check-in’s to make sure I’m feeling okay- and then go in for my appointment in a few weeks to figure out exact next steps. So I don’t have to have another appointment. But in the mean time…. I’m supposed to run higher…

Let’s take a second to pull this all together- my period makes anxiety levels higher and so does running higher- so this will be a great combo for my mental health.

So that’s when the all of the questions and worries start really hitting- and the planning part of me that kicks into gear because I’d rather not deal with emotions right then.

Cool beans….

 

A little background- My period has not been my friend since day one…. Before birth control…. It was awful. And I had to fight to get on BC…. They didn’t want me on it.

Then they didn’t even do tests that they should have… And you know what got them to at least put me on BC… the diabetes… of course.. at least it worked, but why is the only justifiable thing diabetes?? Why can’t it be that something just isn’t right…

Then I had a doctor bring up that it could be other things in college when I went off of BC because I was sick because of the thyroiditis and something was definitely off- thinking maybe it was that. But she said nothing was conclusive. I then eventually went back on BC and let it be/ignored it.

This reminds- of my old endo who told me “I was a stressed out female” which was why he wouldn’t okay scripts….. and that was a quick exit too finding a decent endo in ATL before I moved and getting an amazing professor to help me navigate what was going on. But you know what, doc?- you were wrong.  I will be writing you a letter and sending info about my blood work to tell you so. Because that’s how I roll.

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So fast forward to now.

I often go back and forth between-

“My body hates me” and “dang- my body deals with a lot and still functions (for the most part) and look what it can do.”

Right now- I’m leaning towards- “my body hates me.” I’m also leaning towards- as usual- that I am not a fan of the healthcare system- and I feel like a lot of people look at me and the only focus is on the diabetes and that I should have kids…

 

I spent time googling and researching- I found some general information about PCOS- but most of the “treatments” are very focused about being able to get pregnant- which is important for some people- but like I’ve shared- it’s not for me. We’re all so different…

 

I then go and google diabetes and PCOS…. Well most of the info is type 2 related (but honestly- to me that’s to be expected- because most people with diabetes have type 2).

 

But even then- there wasn’t a lot that felt useful for me or helpful… Most of the posts were outdated and only from the medical side. I googled it in various ways. Nothing really popped up or changed- I did find out that having diabetes makes PCOS more likely…..

 

Um…. Where was that information?????? No one really ever told me that…. Was 13 year old me supposed to be an expert about that stuff by then? And advocate for myself even more so? With the not so great sex education in school happening to top it all off….?

 

I haven’t really found patient voices about this either… and a book for women with diabetes… It only has a few paragraphs about periods in general with pages about pregnancy and nothing about PCOS.

Yet the CDN website at least mentions it, and thank goodness I found that- because that’s how I found more information- but I would like more.

But I’m grateful for the DOC- because some specific people and organizations have been great and came to my side immediately- such as everyone at my job, specific friends, and people at DiabetesSisters.

 

But really- this irritates me- this goes along with the whole idea that it is every woman’s job to have children- this focus on pregnancy and being able to get pregnant reminds me of that… but not everyone wants to have children (or can), some people are not ready yet, and what about health in general?

So regardless of the situation… comments related to that are really not okay in my book- it’s not your business and having children is not my only job in the world. 

 

And the fact that my body seems like it is pretty much a hostile environment- it does add to my reasons for not wanting children… Plus gender norms and social constructs are something I’m not a fan of anyways. But it just really hits me what the focus is and what it’s important and how these ideals spill into healthcare. I think my quality of life and health is what matters above all- right? But I should be miserable so that I can have children like “I’m supposed to” even though PCOS impacts fertility…

 

But what a shock- something related to women’s health that people aren’t really talking about or wanting to talk about or adding stigma to…. And something else I have to dig through and be my own advocate for to find out about. My frustration is through the roof… Oh- and I kind of think “hmmmm” to myself about what the recommended age for any kind of surgery related to this… It’s 40- seems pretty tied to having kids to me.

Periods are taboo and pain associated with it isn’t “that bad”– anything impacting pregnancy is surrounded by shame- and diabetes is taboo- put it all together and you get the nonsense going on.

I had to “use” the “diabetes card” to get an appointment asap because I’m miserable. I then had to use it to get my follow-up appointment. Which again frustrates me… that diabetes has to be what gets things going-there are other aspects to my health..

I’m irritated with the lack of information that is helpful for a young adult with other health conditions who probably doesn’t want to have kids… We don’t all fit in your molds…

At my appointments for just about anything- I get looks of pity and confusion when I say I do not want children- but I get a look of indifference when I say how much my periods screws up all aspects of my health. 

I’m really over “experimenting” with finding things that work… which I know is what this will be… My guess- I’ll be shopping for the right healthcare provider for me because I don’t want someone who’s going to focus on being able to get pregnant. I want someone who is open to other options- because here’s the thing- I’m basically done with having my period- the goal is to not have one- and it’s not medically necessary to plus I’m miserable- but I can promise you that I also have other options on the table because I’ve had it with this not so lovely gift from mother nature. I’m a force to be reckoned with that won’t back down or be talked at. I will be active in my healthcare. It is my body- so it’s my choices (but of course some things I don’t have a choice).

I’m just- not having it right now. Stay tuned for updates- especially on twitter- @mindy_bartleson

ROTATE! ROTATE! ROTATE!

I’m sure many of you have heard this throughout your time with diabetes-

“Make sure you rotate your sites.” I’ve been hearing that since my days on NPH and regular- from checking my blood sugar to shots to pumpsites to the CGM. From my younger years, I remember the warning of “they don’t work as well” or “scar tissue can become a problem.”

For this post- I’m going to focus on pumpsites.

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A little back story for reference

But I didn’t retain any of that, and at some point- my parents pretty much gave up trying to push me to rotate them all of the time- because it’s hard to convince and force a stubborn and defensive child who is still terrified of needles and only liked her butt and legs for pumpsites.

In my mind, I didn’t like any of the other pumpsite options I had. I basically lost my stomach at one point because of an intense allergic reaction- and I still have insane scar tissue- 10 plus years later. My legs were my favorite spot-Followed by my butt. I didn’t want people to see them or for a chance for them to come out easily. All the other places also felt too close to my line of sight- making the process all the more scarier.

 

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My first much needed pump vacation

Fast forward a few years- to teenage me- pumpsites are starting not to work as well. I bleed into them often, etc etc- all of the signs of scar tissue. I was more frustrated with my diabetes and angry at the pump.

So after my senior year in high school, I took my first pump vacation since going on the pump about 10 years before that.

It was an amazing break.

Things seemed better- each summer after that I went on a pump vacation. (I still preferred my butt and my legs with the occasional arm).

 

Trying something new

My junior year, I began paying attention to site rotations, and I started POLI full time. (It was part of me trying to get through diabetes burnout). I then embraced the idea of using my hips and my arms on a regular basis. I still cannot use most of my stomach, and now my legs really don’t work at all.

I started putting it on one area then moving to the next- for example- right arm, left arm, right hip, left hip, etc.

But it was hard to remember what spots in those areas I used when I returned to an area. The plus was that it would be several weeks before I would return to an area though.

Then I get to family camp during my senior year, and a fellow volunteer mentions that he cannot really use a pump easily now because of built up scar tissue- no matter how long his pump vacations were.

This really hit me and especially my intensifying OCD- I was terrified of this possibility.

 

Finding a rotation routine that worked for me

So I brainstormed. I modified my technique.

I would rotate, but would stay in an area so that it was easier to keep track of where I was last. So I do the full “zig zag” and stay in an area then move to the next area once I’ve “used it up.” So I’ll zig zag sites along my right hip, then left hip, then right arm, then left arm, etc.

The pumpsites don’t work quite as well in my legs, but I still go there. It’s gotten better, but I do not want to overuse other areas and have the same thing happen to them. So I increase my insulin intake while I’m there. 

I definitely noticed a difference. I’ve had way less failed pumpsites. Less bleeding into sites. Less sites not working. Better insulin absorption. Less painful sites and marks. Etc etc.

It also satisfied my OCD that I was keeping track and doing what I could to rotate. If I feel like I need to be on my “A-game,” I put a site in an area that is my favorite and always a top notch site.

Since I started rotating more my junior year, I haven’t actually taken a pump vacation. It’s made a huge difference in my management.

 

The “experiment”

On April 1, I was curious to see how long it was between site areas. I’ve been excited to write this post, but I still haven’t returned to the area where I started to keep track (feels pretty cool and great to me!). I’m about to approach month 3, and I did some calculations- by the time I reach the first area- it will be over 4 months since that area on my body has seen a pumpsite.

Many of my care providers stated that if an area isn’t working well, that giving it a break for 3 months can help a lot. So I’m doing even more than that. It makes me feel pretty good about management (and hey- look- it doesn’t always have to be about the numbers!)

My next plan is that once I find out exactly how long it’s been between sites, I plan to take a pump vacation. I’m not feeling that really strong desire for one or angst towards my pump, but I want to be more proactive. Maybe it won’t even be 3 months- maybe just a month. (but self-care and mental health are important!)

takeaways

Growing up- I didn’t care at all about site rotations-

Clinical providers and pump/medical companies have a point-It’s beneficial to rotate your sites!

So if I could recommend something-  ROTATE! ROTATE! ROTATE!

And not just your pumpsites, where you check your blood sugar, give shots, and your CGM. (etc).

It actually really makes a difference, and makes managing diabetes very slightly easier- because it isn’t always a factor.

I’m all for shortcuts and doing things to make this usually pain-in-ass disease a little easier to get through.🙂

Honestly- It’s Not Just on Me

Do I call this an open letter? Or a rant? Or a statement? Who knows- but here I go.

But I like letters- it makes me feel like they are going somewhere. and I already know this will be filled with “why me’s” and pointing fingers and things people don’t want to hear- but I honestly do not give a shit right now.

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To Diabetes Healthcare Providers and Diabetes Clinics,

You tell us to adhere to a specific type of care without knowing the factors that impact us or seeing if we have ideas.

You throw around the terms non-compliant and uncontrolled diabetic.

You shove statistics in my face with saying how do we get them to change.

You rarely ask us how to fix things or what our thoughts are- only certain people.

 

But I have a question for you– what if- just what if- it wasn’t all the patient- it wasn’t all on me.

 

What if yes- I will own my care and my decisions and know I can change-

But why is all of the blame on me-

Why is the finger only pointed at me-

Why don’t you ever look within and think- hmmm- maybe it’s the system- maybe it’s me too- maybe there are other factors at play Maybe there are things that I could do to change these statistics and not just blame the people who live with this every single day. 

 

The more experience I have in healthcare- the more I question these statistics- not that they aren’t valid- but where we go from here.

 

You tell me to adhere- but the healthcare providers only stay in your clinic for a short while- and  I cannot build a relationship- if you aren’t keeping providers- how do I not get lost through the cracks?

You tell me to adhere but many of you might spend 10-15 minutes with me- 20-30 if I’m lucky. Or even less.

You tell me to be early and sit in the waiting room- but you are often late- but act like I should abide by that.

 

I see you with your research saying the transition from pediatric care to adult care isn’t great- and I see transition clinics or coordinators pop up more-

But what happens when it’s too late for a transition clinic for me- because where I lived there wasn’t one?

So please- what happens if I missed that window that was out of my control? Do I slip through the cracks again? What happens if I’m just an adult and these things happen? Does it not matter?

 

You tell me as a young adult with diabetes that I’m at a higher risk for eating disorders- but you rarely talk about the markers for an eating disorder and that the markers for “proper” diabetes management are almost identical.

 

You tell me that in the teen and young adult years that my A1C will go up.

You tell me in your research that time between endo appointments for me is over a year- do you ever ask why? Do you wonder why we don’t want to come back? Or just say it’s because I’m not compliant?

You tell me that what I do during young adulthood is increasing my risk of complications- but all you do is use them as fear tactics- and not explain that there are people out there with complications- and it’s honestly not the end of the world- you don’t tell me where do I go from here.

 

You throw out these studies and these stats at me with comments of implications- but are you doing anything with these implications? Besides reminding us that we are what you called non-compliant and uncontrolled?

How could you know the whole story when you barely spend any time with me in the appointment- when endos from your clinic don’t stay long and I am unable to build relationships with them? When my insurance was so specific about timing.

 

You know- specifically when I saw the statistics about diabetes care for young adults- I was shocked and saddened by what I saw- specifically about how long we go between appointments- the A1C’s I could understand.

 

But now- I am not surprised- now I understand it- but yet- the finger is always pointed at me- yet you throw me into a statistic- without even asking- could part of it be me?

 

Because when I found out my newest endo (number 8 in under 3 years)- is leaving- my heart sank again- because- it hurts- and I’m having to catch myself because I’m saying it must be me. I must be the problem. But it’s not only me.

 

But I show up to your appointments with my patterns figured out and my data printed and my questions ready- and asking for your input to improve my care. I want your input and feedback and help troubleshooting when I’ve tried to figure it out but can’t.

I spend time looking for healthcare providers and making sure they are the right fit for me. Because I want a good relationship with one.

And between finding right fits and logistics at clinics- I feel like there is no winning. And you often label me noncompliant or uncontrolled- but you barely know me- you just see my file and pass me along to the next person- I wonder if it will work out- I wonder if they’ll stay.

 

For you see- I am burned out– now I just want to go rogue. I have little desire to go to a diabetes clinic now- for I have tried- and it has all been on me and the people in my life- with very little return- with not even asking me my thoughts or experiences or input.

 

But honestly- it’s also you- yet- where are the statistics and studies on the providers? On the clinics? With implications and feedback and ways for them to improve?

According to some there is an epidemic with non-compliance- but it’s all our fault. It’s all on us. But most of you do not live through this every day and every night.

But you do not look into our lives- which are so different- you do not focus on anything else besides the diabetes-

But apparently- it’s just non-compliance and just uncontrolled-

But you’re missing something- you’re missing that there is more to the story.

 

Because if you want me to improve- well you should too.

#cdnRetreat2016- Proving the World Wrong

CDN Leadership Retreat 2016

I’ve now been working at the College Diabetes Network and living in Boston for about a year now. Wait. What. I’ve been adulting for a year??? About a year ago, I was dumb and doing what I do best- which is hit the ground running and going a million miles an hour. Which. I don’t do quite as much now- some people still don’t believe me (I’m looking at you- UGA Student Affairs department). I graduated college. Went on a cruise to Europe (missing graduation because it was graduation or camp- soooo- camp won). The day after getting back from Europe, I took a two day drive to Boston. The day after I arrived in Boston, I started at CDN.

WOAH! right?

The week after I moved and started working at CDN. We had our 2nd annual CDN Retreat. Which was amazing. Of course. Just like the first one I attended as a student the year before.

This year was different because I was settled in at my job. I felt more confident and prepared. With my feet firmly on the ground. I believed in myself and knew that this is where I should be.

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And of course- this year was amazing. Not like we’re surprised or anything. Again, we had over 400 years of diabetes experience! So much happened in (now) 5 packed days of leadership, strategic planning, leadership transition, advocacy, young adult diagnosis, College Diabetes Week, and oh so much more! And of course- during our bringing the retreat home- when we shared our highs and lows- the tears immediately started to stream down my face. Of course, I am grateful for the continued power of me too- not just the diabetes- but the CDN involvement!

 

I was able to witness so much leadership and inspiring moments all week long. People came together from all across the country- many of them not knowing a single person before coming. From California to Vermont to Georgia. 25 student attendees. 6 staff members. 2 interns. 3 volunteers. and several special guests!

I got to listen as these young adult leaders with diabetes (or impacted by it) – who according to the world- aren’t supposed to care about anything outside of their own lives and aren’t supposed to be involved or care about diabetes. They aren’t supposed to have their lives together. They aren’t supposed to have a good work ethic. You know- those things we hear about our generation all of the time? The statistics that surrounds young adults and diabetes.

Well- just so you know- they proved you wrong.

They care- about a lot- They want to be a part of the change- and have conversations that thought leaders and medical professionals don’t even want to have.

They talked about diabetes in its relation to mental health, body image, and eating disorders- and they want to do something about it!

They talked about

being an example for the next generation.

spreading the word.

the unrealistic expectations people have on us with diabetes- perfection isn’t possible.

their stories and their struggles and their triumphs.

insurance and access.

clinical providers.

advocacy and things they would like to change.

the transition to college with diabetes.

sharing and owning their stories.

hopes and dreams.

But also- this is my answer to everyone who asks if I regret deciding not to go to law school- or those who make comments about my life choices- specifically about my social work degree and working in a non-profit.

This is my example that I have no regrets. That you shouldn’t make comments about my life choices. I can give them examples all year long- but a very powerful and single example will always be the CDN Retreat.

 

The very first year in 2014- I admitted out loud for the first time that I had diabetes burnout which began my mental health transformation.

Last year- I proudly exclaimed I had no idea what I was doing- which technically- I’m still proudly winging it.

This year- I proudly labled myself as a creeper on social media- which I am. But also that changing my plans and everything was absolutely terrifying, but it turned out fine!

I wonder what next year will bring? There’s a lot of options!

I feel so grateful that my worlds can collide-

I was reunited with 4 members of my Camp Kudzu family!

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I was reunited with the current chapter leader/president and finally got to meet the VP in person of Dawgs for Diabetes! So proud of my Alma Mater! Go Dawgs!- of course I am always beaming and proud of everything they do and who they are!

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My worlds collide on a regular basis- the DOC, camp, my job, etc. It’s a beautiful thing.

 

We had enough people to take a CDN alum pic (some were volunteers this year!)

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There were a few of us at this year’s retreat who attended the first retreat in 2014!

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But not only do my words collide, but so do my passions. All of the things I care about- all of the things that are seriously my soapboxes- are a part of my job. Which I constantly feel grateful for.

 

It’s wonderful to reunite with people- finally meet amazing people in person that I’ve known via email and social media for years, and in the end widen my circle of friends -always the silver lining to this crappy thing called diabetes we are all impacted by. But these friendships and connections are so much more- it goes beyond diabetes- which is just what brings us together- but has that silent understanding that the whole room gets it.

I am always awed by the diabetes community.

And sure this is biased- but I am so proud of what we do as a non-profit organization. I am so inspired by all of the people I get to meet and interact with on a regular basis. But especially the CDN students, chapter leaders, and alumni.

I am honored to know all of the student leaders (from the past, right now, and in the future) People I get to meet and learn from. They inspire me on a regular basis and teach me new things. People, I am so proud of constantly- proud of their accomplishments and proud I know them.

All year long I get to work with amazing people involved or touched by CDN, and once a year I get to be surrounded by many them in a beautiful place in Maine in May. (Not to say I’m not always surrounded).

These amazing people- are these young adult leaders with diabetes- the very people that aren’t supposed to care or be involved or any of these things.

I wish they (well we) didn’t have to prove you wrong- but that’s what they are doing- they are proving you wrong on a regular basis.

They care.

They are doing something in the world- they are changing it. 

Please note that as more students write blogs about the retreat- I will be adding them below!

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Blogs about this year’s CDN Retreat!

Just a Type 3 in a Type 1 World” by Morgan Kath

My Experience at the 2016 CDN Retreat” by Molly Johannes

Our Normal as T1Ds” by Alondra Zambrano

CDN to the Rescue” by Will Jennette

 

 

Maybe One Day- my hopes for the future of mental health & diabetes

So today closes out Mental Health Awareness Month- but like I said in my post yesterday- it never really ends for anyone- even if they don’t have a diagnosis or a chronic illness or life challenge- mental health is always around and important to keep in mind.

But I wanted to close out with my “hopes” for the future- yesterday when I talked about hope– I mentioned reaching limits and the hope that is always there in some way- like when I wonder when people will get it? Get the mental health bit- well I have hope that someday- I won’t be ranting and raving about mental health- especially related to diabetes and access.

So this what I hope to see in the future- hopefully some bits sooner rather than later– and most of these hopes are related to mental health diabetes-

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I hope that one day-

mental health providers won’t point fingers at diabetes healthcare providers and that diabetes healthcare providers won’t point fingers at mental health providers.

I hope that one day-

more people will realize- especially decision makers and strong voices in the community- that the current system doesn’t work and needs changes- and that we must be a part of it.

I hope that one day-

mental health services will be offered not just at a diabetes diagnosis (which is happening more and more) but after diagnosis- because let’s be real- most of us are in survival mode at that point and mental health isn’t really the focus right then- but most likely it will be later- hey “Maslow’s Hierarchy of Needs” comes to mind! But right now- there is often little to be found.

I hope that one day-

access to mental health services will not be as limited- with less hoops to jump through- more readily available and affordable.

I hope that one day-

that caregivers- like healthcare providers and parents- will keep mental health in mind during those teen years. Instead of only focusing on compliance or that they are rebelling (which may be so)- but that there might be something more going on- like mental health- like burnout- like bullying- or so much more- maybe not even diabetes related.

I hope that one day-

more services, resources, and research will be available for the Type 3’s in our lives- parents, siblings, friends, significant others, etc.

I hope that one day-

barriers to access will be recognized and the blame game won’t just be on the people who need these services- but on the system and stigma that are always at play.

I hope that one day-

More research will be done to add to the research that is happening. That Diabetes Burnout isn’t ignored. That the research on Diabetes Distress is careful and keeps factors in mind.

I hope that one day-

when life happens- like a death in the family- that the focus won’t be on the A1C.

I hope that one day-

more resources will be available on how to take care of diabetes when mental health is at play.

I hope that one day-

Diabetes won’t always be the center or the go to (EASY) answer for things related to mental health- because let’s be real- it isn’t always diabetes.

I hope that one day-

there will be more me too’s- because we as a society won’t be so scared or ashamed to talk about it.

I hope that one day-

Mental health will be as much a part of diabetes care as eye care and checking our feet.

I hope that one day-

we understand that diabetes and mental health can be tied together and sometimes they interact with each other- but sometimes- this is not the case.

I hope that one day-

when people ask how we are- we give an honest answer and they expect an honest answer.

I hope that one day-

mental health won’t be considered a joke.

I hope that one day-

the future generation will see our generation speak about mental health candidly and be honest about our own mental health- so that this won’t even be a struggle for them.

I hope that one day-

more and more people will own their stories and realize how powerful they and how they can changes things within themselves and outside out in the world.

 

But there are things I also hope for myself-

I hope-

That I will continue to learn about this crazy thing called life- especially when it comes to mental health and diabetes.

That I will truly love myself without question or doubt- even with my flaws.

That I will know my triggers for anxiety and OCD.

That I will continue working on honesty concerning mental health and diabetes.

That I will make sure to protect myself from things that are not healthy- including people.

That I will work on new habits.

That I will look to new each day.

That I will stay firm in my barriers and limits when I need to.

That I will not blame myself or feel any guilt for my lack of or not great relationship with my family- including my mother.

That I will not back down or settle when it comes to any aspects of my health.

I hope that I will keep improving on my self-care.

These are some of the things I hope- and some of these are happening more and more- but there’s still so much to be done. So many barriers to demolish. So many stories to share. So many changes to occur. I hope for these changes- especially when I wonder if others will get it- especially the people that really need to get it- that is what I hope for.

 

But you always have hope

Mental Health Awareness Month is almost over- and I slipped and didn’t get out another post last week- which is messing with my own schedule- but I’m not sorry for it- it’s called life- am I right?

But as this month comes to an end- and just like diabetes awareness month- it doesn’t end here. Mental Health is an “always” thing.

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You know what helps with these “always things?” Hope. You see- at the end of the day- you always have hope. 

 

Hope can come in the form of perseverance. resilience, self-care, hobbies, dreams and goals, etc.

Hope is always there- maybe it’s faint and quiet just always there or maybe it’s loud and booming right when you need it- or somewhere along the spectrum. Maybe you didn’t realize it was there during whatever was (or is) happening. Even in the darkest or most stressful of times (or even just day to day) – you can always find hope.

Hope is there-

When you cry and reached the end of your rope

Finding the right healthcare provider or navigating the system

Because insurance can be a pain to navigate

Sometimes you get caught up in the numbers

Have no idea what’s going on

When the thoughts concerning body image give you reminders

When mental health pops up around many corners

Because burnout is a thing

asking why people aren’t talking about it

and you wonder when the other players or decision makers or anyone involved will “get it.”

In those any many other situations- you can always find hope.

You find strength in asking for help

You learn about yourself (and keep learning)

 

 

Because you know that finding the right healthcare provider is important

You decide to never shut up

It’s getting creative when handling your anxiety

Finding relief from an answer that you didn’t know you needed

It’s finding your people- the people who get it and the people who care (maybe they fit both categories or just one).

It’s doing what you do to feel better- like advocacy

It’s getting through the rough day or the rough patches.

It’s holding on to things that mean something to you.

It’s the hope that things can (and will get better).

It’s the hope that things will change.

It’s the hope that you aren’t alone.

and the list can go on.

That’s the thing- there’s always hope- and it means something different to everyone- and something different at different times.