Dating and Diabetes? Let the GIFs explain it all.

So- dating and diabetes-

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I know, I know. This topic- been there done that.

I still haven’t decided how I feel about dating- in general- I don’t love it. I would like to make sure that I note this- I identify as a cisgender, straight, white,  female. 

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I’ve definitely noticed two typical “thought camps” for different areas with dating and diabetes. Tell them right away or wayyyyy later. It really matters or eh not really. Diabetes hurts my dating life or doesn’t. But again- I firmly believe in the spectrum, and that you can change where you fall. Plus- is there really a right or wrong? 

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For most of my dating life- it’s been guys in my life- friends, friends of friends, inner-circles, etc. Needless to say- I did avoid dating in college- eye on the prize- getting out of GA (and several other reasons). So then in general, there was getting back into the swing of things.

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So for most of my dating life, exposing the diabetes was very much already done. It wasn’t a factor or a thing. Usually, they had a very decent baseline of knowledge concerning the diabetes. So I never really thought about it. 

One guy, I dated for a very long time (well long time for my age)- was in the “sweet spot of things” (hehe punny). He asked about it, looked into, was as understanding as he could be, didn’t talk about it too much, etc (well at the time for my high school/early college self).

He even went as far as looking into diabetes and pregnancy- andddddd que the very very pronounced tires scretching. It actually meant a lot that he looked into it.

But.. that was when it really hit me- I don’t think I want to have kids of my own- which I had been thinking about adoption- but at that moment- I started really thinking do I even want children? And marriage? Maybe A LONG WAY OFF, definitely not now- and is that something I’m interested in? I was still young- and recognized that I was young. I was still figuring things out. 

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Needless to say- it wasn’t going to work out.

I’ve been fortunate enough to not have relationships end because of or related to my diabetes- I have however had quite a few relationships not even begin related to it. Usually there are factors- when it comes to not working out. 

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However, since moving to Boston- my dating life has significantly changed. I’m still not in the mindset of being in a committed relationship. But I decided to start dating (and yes this includes online dating). I’m still trying to figure out my type. It has definitely been an adventure. And the diabetes part is very different now.

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A lot of my inner-circle in Boston involves people in the diabetes sector- TBH- I’d rather avoid anyone who has and/or works in diabetes- I have it and work in it- but I’m sorry that’s WAY too much diabetes for me.

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So that means I’m going on dates with guys who didn’t grow up with me or were in my inner-circle- which really means they don’t know about me and my diabetes. They very well might not even know I have diabetes or work in it. and who knows what their diabetes knowledge is. 

So my approach has changed- well the fact that diabetes is still my tool for weeding guys out hasn’t changed (which I know, I know- might be a little harsh).

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But if he doesn’t care (in a negative way), doesn’t care to get it, etc. etc. (or is afraid of blood and/or needles)- it’s not going to work- and honestly- I’d rather not waste my time.

It’s like if he didn’t like cats and/or dogs- It’s not going to work. So how is diabetes any different?

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Most of the time, they have no idea I have T1D until I whip something out– blood sugar meter, CGM, shot, insulin pen, etc. then I go- oh yeah, I have T1D. Sometimes it comes up in other ways- talking about college, jobs, etc.

If the date is going poorly, I don’t bother bringing it up.

 

Let’s be honest, it can be a little trying. Usually, it’s giving a mini lesson on diabetes during the date. I’d definitely rather not do that- especially if it’s not going well. 

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I also know some people, who don’t bring it up until several dates in. Everyone is different and so is every situation.

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It’s definitely been an interesting dating experience- even beyond the diabetes. I started thinking about some of the experiences- specifically diabetes related when it comes to dating (especially the first date). I immediately thought about GIFs and laughed to myself of course. So here are my reactions- (none of these images are mine). 

 

Honestly- the biggest deal breaker for me? When my date won’t stop talking about diabetes or asking questions- It’s mostly- the talking about diabetes not the questions. and if they don’t stop talking about it when I ask? It’s probably not going to work out. Like I’ve said- I have a lot of diabetes in my life- we don’t have to discuss EVERY diabetes topic at once. 

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Oh my friend or a family member had/has it- This can go one of two ways.

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Conspiracy theories, spewing myths, diabetes jokes, and advice- (and won’t back down or let me explain at all). 

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Look of questioning-

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Asks me if I can eat that- or my new favorite “will I break you?”-

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So you’re like a robot, bionic woman, cyborg, etc? (my favorite!!)-

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When they get offended or upset because I won’t listen to the conspiracy theories, “advice,” or comments. (Also when I’ve heard comments about not believing in feminism,  healthcare should have been left alone, homophobic/racist/sexist comments, etc)-

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General poor reactions-

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Asks me questions-

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When I notice a test strip or lactaid wrapper-

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Is my pump or CGM showing?

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Wait, did I tell him I have diabetes yet?

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the rare time his reaction to diabetes AND the date goes well-

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And to be perfectly honest- diabetes falls behind on my list of “concerns” when it comes to dating. I’m more worried about the kids/marriage topic.

A lot of the time, dating is frustrating-

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But it can be fun, a learning experience, etc. At least there’s a plus to diabetes when it comes to dating? Diabetes pick-up lines (FYI- I do not respond to cheesy/crude pick-up lines)

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(P.S. I may or may not have had a LOT of fun with this post- and I’m grinning thinking “I’m hilarious.”)

But let’s be real- this is the “real me.”

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Give Yourself Some Credit- It’s Okay to ‘Not be Okay’

It’s okay to not be okay.

Breathe.

Say it again.

It’s okay to not be okay.

Breathe.

Say it out loud-

I’m not okay. But it’s okay to not be okay.

Because how do you move forward… if you don’t even admit the truth?

It’s okay to not be okay.

Social norms say no- but it’s still okay to not be okay.

Let yourself not be okay because then you can pull yourself out of it.

Don’t apologize for it either.

Do what you can, now.

It’s okay to not be okay.

Because eventually, you’ll be okay. It most likely won’t be an instant light-bulb moment. Maybe that starts it, but it takes time. It takes time and effort to get back to “okay.”

 

It’s okay to not be okay- That’s something I’ve learned over the years.

If I’m not okay- and I don’t admit I’m not okay then I don’t face it. THEN it comes to get me later- but with the domino effect in full force.

I could see myself going the direction I typically go. The mindset of I don’t have time for it right now. The mindset of  “okay, so I got a new medicine. Which means everything will be back to my version of normal.” But that’s not how it works. When you’re sick for almost two months (and adjusting to new medications- a new birth control- but still waiting to figure out the thyroid), you don’t just get back to your normal in a blink of an eye. I also had to remind myself that I have amazing people in my life, and I cannot do my usual- which is shut them out. 

It started hitting after about a month of my period going on and endless doctor’s appointments. It continued even after I finally got somewhere. But I had to keep taking a moment and remind myself- it takes time.

BUT I’m impatient. Once things are finally moving, I expect to already be at my destination- for everything to be fixed and handled.
In terms of this summer and this adventure of PCOS, endometriosis, and thyroiditis. 

  • I was beating myself up about running- my first run back was a rough two miles, and I immediately thought- I just ran a half marathon– why are two miles difficult? I had to remind myself- I wasn’t supposed (and was too exhausted/sick to) work out.
  • I should have my life all sorted out again. So I had to keep telling myself- When you’ve been not yourself for a while- and when you get behind- it takes time to catch back up.
  • My blood sugars should be back to how they usually are- but my body is different and things are still getting squared away- plus I was burned out.
  • My body should be taking to this birth control and not having any delays- oh wait- hormones and such- that takes time.
  • I should be back to my usual habits- it takes time to get back into those as well.
  • Why are things different? This is something I always wrestle with. And forget about- Getting an official diagnosis of PCOS and endometriosis- with my thyroiditis still in full swing- means an aspect of a life change. So blood sugar management and mental health care will be different. What worked before may not work now. But it’s not just that- Things I might crave are different. My skin clears up then breaks out again- so I needed to switch my skin care routine. The times that I feel motivated to work out too have changed. Etc. etc. 

But I think this applies to a lot of different things- not just moments in my life.

When stuff happens, it does change you- maybe a tiny bit or maybe a lot. When something happens, it also takes time to come back from it too. So then I need to give myself some credit- which I’m not the best at- but I’ve made a lot of improvements. 

 

Give yourself some credit.

You got through this.

Give yourself some credit.

You paid attention to and listened to your body.

Give yourself some credit.

You didn’t back down.

Give yourself some credit.

You took it easy or paused things when you needed.

Give yourself some credit.

You kept functioning.

Give yourself some credit.

You asked for help.

Give yourself some credit.

You didn’t just settle.

Give yourself some credit.

You learned something from this.

Give yourself some credit.

You didn’t bottle it up (completely).

Give yourself some credit.

You found some me too’s.

Give yourself some credit.

You’ve come a long way.

Give yourself some credit.

It’s over.

Give yourself some credit

Because you admitted you weren’t okay.

So-

Give yourself some credit especially if you remind yourself it’s okay to not be okay. 

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(not my image)

 

We Meet Again Diabetes Burnout

I can feel it. I can see it whenI look at my CGM with indifference. I can tell when I just pick a random number to draw out on my insulin pen to give insulin. It lurks around the corner when my usual inclination to try and trouble-shoot is nonexistent.

It’s back. But this time is different. This time I’m admitting it.

Hello burnout.

I’m not sure if it’s full blown burnout or just the logistics and healthcare. Who knows at this point.

What should I or anyone else expect when you’ve had over 10 appointments in a little over two months plus your body isn’t cooperating with you at all.

How am I supposed to feel? What’s supposed to happen when you’re in a survival mode and just trying to get through the days? How do you figure things out when there are still unknowns?

All of those questions and knowing it also isn’t over yet.

I’m glad I already planned a pump vacation to change things up, and I was even device free for a week when I didn’t wear my CGM.

I was suppose to write a post about pump vacations- but I’m evening struggling to write about diabetes right now. I’m a tad over it.

I want it all to vanish- the diabetes, ADHD, OCD, anxiety, thryoid issues, PCOS, and endometriosis. At least for a little while. I’d like to feel back to my definition of normal.

My desire is to cancel every appointment and to do the minimum whenever possible. I’d rather not fight to get answers.  I’m tired. I’m over it. Fed up.

Yep. That sure sounds like burnout to me.

Now before anyone sends me articles about how to avoid or get out burnout, please don’t. That escalates to avoidance behavior for me. One thing I did learn several years ago is that I need to feel it. I need to feel the burnout and process it. I need to deal with my emotions. I need to let myself hate diabetes to the extreme.

I’ve noticed some trends. Burnout hits me when other things are going on- specifically health related. A health issue that interferes with my management. That makes it near to impossible to manage it like I prefer. When- no matter what I do- I can’t get diabetes to cooperate with me or my health.

This happened my junior year of college when thyroiditis hit and I was doing WAY TOO MUCH with no self-care. I learned a lot then. 

Here I am today, with three new diagnoses– PCOS, endometriosis, and something thyroid to be determined. All of which is taking over two months to sort out, and it’s not even finished yet.

It felt like the rest of my body was snickering as I was doing what I should- it turned around and said screw it. Let’s change everything again. Let’s give you no patterns. Let’s make it so that managing blood sugars is even more of a chore than normal.

So what happens when you are doing what you should and it doesn’t matter?

It gets annoying and tiring.

Of course- I have burnout along the spectrum every now and then- we all do- and when people say they have never had any kind of burnout… it’s very hard for me to believe.

But I hate diabetes- more than usual. I hate that it can be tied to other things like my thyroid or hormones. I hate how many appointments there are. I hate having to fight to figure things out.

I hate how it impacts my mental health.

I hate it. I hate burnout. I hate that other outside (or inside) factors can add havoc to your everyday management, and after a while- you just get tired of it. I hate that there are things I’m putting on hold (which I need to and recognize is fine to do). 

So much of my life is diabetes- and by choice. I wouldn’t change it for the world.

I would however change “the crap” that comes with diabetes.

I’m so glad that I’m already in counseling- we switched the focus to my diabetes burnout and recent health issues for right now.

I’m so glad I have self-care in my life (and that I learned my lesson last time).

I’m so glad I have wonderful people in my life.

And I’m so glad that there is always a light at the end of the tunnel- and I can feel myself beginning to emerge ever so slowly from burnout. Who knows how long I’ve been here. I can often feel myself slipping into it, but I never know when it really hits, until I’m already deeply there.

But as I get my answers and things improve- and I process everything- and I let people in (and allow them to stay)  that will pull me out of diabetes burnout. Even as I write this post- I can feel myself process and practice self-care that is always helpful for me. 

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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.