What Mental Health Means to Me

Did you know it’s almost Mental Health Awareness Month? Yeah- it’s happening during the month of May! So you guessed it- you’ll be seeing several new blog posts about mental health and diabetes this month (I mean… it’s in the name of my blog). I’ll also be sharing older posts on social media. (Diabetes Blog Week also falls this coming month- so be on the lookout for that too!)
I’m definitely glad that diabetes and mental health are being talked about more…. But we still have a ways to go on the conversation and just a ways to go on care and outlook and stigma- etc etc etc. 
I definitely have a lot of thoughts. Most of which stem around the fact that there needs to be more done on mental health and diabetes- together and separately. 
and I’m not just talking about a mental health diagnosis. Not just diabetes burnout (or “diabetes distress”- which I am not a fan of).  But the everyday parts and so much more. Being aware of mental health isn’t just for people with a diagnosis or anything like that- mental health is just important!

So before the month gets started- I wanted to share what Mental Health means for me.

 

Mental Health is being proud of how far you’ve come in terms of your past and how you handle it, but realizing there’s also room for improvement because it’s a journey.

Somedays it’s being hit with anxiety that swallows you whole and you can barely breathe. It’s feeling a panic attack coming- often when you don’t want it to happen like with a lot of people around.

It’s trying to remind yourself that maybe this is the anxiety talking and not real life– especially when the anxiety is screaming at you cannot do this or being harsh towards you.

It’s also trying to ask yourself when the anxiety or ADHD feel more intensified than usual- Is it related to a blood sugar? Is something else going on?

It’s the ADHD and anxiety combining to sometimes make it difficult to look at a million different parts and wonder where do I start? Sometimes preferring not to start at all.

It’s noticing a bunch of different parts and knowing that it’s a trigger. So you separate it or put it in order and remind yourself- one part at a time. 

It means that I have pushed friends to the limits because I would lean on them too much probably when I should have gone to a mental health profesional- but the real friends never wavered and they stayed and not just stayed but have been real with me and called me out when I needed it. Especially when I couldn’t afford care due to finances and time or wasn’t ready.

It’s going for help and asking for help when I’m ready and not when I’m forced for professional help or opening up to people. It’s not weakness but a sign of strength and resilience.

It’s knowing that we are not alone. That even though it sucks, it’s not our fault- not something we can just “fix” right away because people say to. That it takes time and bumps along the way- and trial and error.

It’s knowing that I definitely use and have used my diabetes as an aspect of control when I felt the rest of my world was crashing around me which still has a huge impact on my care.

It means knowing that mental health diagnosis runs in my family– depression, ADHD, bi-polar, anxiety, etc.

It means that diabetes and mental health go hand in hand and impact each other. But that they are also not connected- which is why I’m not a fan of diabetes distress- SURE they can be very linked and I experience that on a daily basis, but are we really going to ignore the fact that diabetes isn’t linked to absolutely everything? Are we going to ignore when it runs in the family? When events happen? When there is a higher chance in college? When- I could DEFINITELY continue.

It means knowing that mental health didn’t feel taboo in general, but it felt taboo for me. Which is what made diabetes burnout hit me so hard because it all came crashing at once. It means that I learned from this.

Mental Health also means using my “social work muscles” and making sure I practice self-care. I learned the hard way how important it is not to skimp on self-care. To make sure it is proactive and not just retroactive.

It means trying different things to find what works because we are so different– what works for someone doesn’t always work for everyone.

It means making sure I write. Because that’s how I express myself. Making sure I have alone time. It means making sure I have time for what I enjoy. 

Mental Health means holding onto hope in every facet of life. It means using mindsets that work for me- maybe even if they aren’t popular. Like that in relation to a cure for diabetes I live for today which is very different than the rest of my life- and I stay “jaded.” or it means that I get tattoos to represent key points of my life- the great and not so great because it helps to tell my story and remind me of so much that I need to remember- mostly that I can do this.

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Mental Health means for me finally getting answers and techniques with a diagnosis of ADHD and anxiety. It means giving medication a chance.

Mental Health means that is has impacted who I am– and sometimes even for the better.

Mental Health means being aware that it does impact my diabetes- specifically stress.

It means trying to navigate life now that I am out of survival mode.

It means making sure that I take care of all of me and not just the diabetes.

It means trying to practice honesty in all aspects of my life.

 

That’s just some of what Mental Health means for me. 

Look for posts this month about my diagnosis, experience with medication, how diabetes and mental health interact (and that they are both taboo), posts with help from the DOC, and much more!:)

 

The Tales of a (former) Medical Supply Hoarder

There, I said it. I’m a medical supply hoarder- mostly a diabetes supplies hoarder. (I’m not using this term in a joking manner either). I would like to note *former because I’m finally at a point where I don’t feel the need to hoard supplies now.

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Why is that? I’m saying goodbye to survival mode. I said goodbye to a crappy insurance and switched to a new one that is so much better.

I did not feel secure in terms of my health and access for a long time. I am still very fortunate and privileged for many reasons which helped me in many situations, but it was still a rough situation. I was fortunate enough to be born into a comfortable financial situation with two white  educated parents and in turn good health insurance. The good health insurance unfortunately changed when my dad passed away. A lot was done to make sure I at least had health insurance because at that time having a pre-existing condition meant that I basically wasn’t eligible for insurance on my own. I was very aware of this at a young age. But again, I was fortunate enough to get help through children’s medical services to help with copays, meeting deductibles, a pump, a CGM, getting enough supplies, other appointments that my insurance really didn’t cover at all, etc. But that ended when I was 21, and what a shock (not), there aren’t a ton of resources for after you reach that age to help with those costs, and resources like this usually involve bending over backwards and a lot of stipulations.

You see, I hoarded supplies with the help of my doctor and many people in my life because I did not fee secure. I did not feel confident that I would be able to access supplies.

I would mysterously get “dropped” from my insurance for whatever reason they had or I would get “lost” in the system. With no notification unless we happened to find out. I never knew how long it would take to get it figured out or when it would happen. Insulin isn’t really an option for me (but they sure seemed to think so), and I was terrified of not having any or any test strips.

But I don’t just have diabetes- I’ve got a lot of other things going such as periods that can sometimes be really debilitating- birth control with my insurance was an absolute headache and pain.

I would have to jump through hoops to prove that I was eligible for health insurance- even after the affordable care act happened. They would treat me like I didn’t know any better- that I would lose health insurance at whatever time they decided that day. They actually always treated me like they were better than me, and using pharmacies that have actually been called out in a lot of stories about access and costs and not treating people right (what a surprise). Whenever I talked with my insurance company or that pharmacy, I felt like I was always being disrespected and that I wasn’t getting treated like a human being. I actually reached out for help via research or asking those who were knowledgeable in this field. 

My costs were high for prescriptions and care and everything in between. I also didn’t really know what my costs would be- it was never consistent and knowing up front wasn’t really an option. Mental health and eye exams were barely covered.

I could continue.

But then, in January,  I was able to switch to a new health insurance through my job. I was ready to move on and be secure and have less of a headache.

I keep having moments where it really hits me -that I am secure- after over 10 years of being in survival mode.

But these moments- where when I go to the endo or my psych for appointments- I know how much it costs and how much my prescriptions costs. I cried (tears of joy)

When I didn’t have to pay full price for my birth control. I cried.

When I found how much my pump and CGM supplies cost

That I could go back to my preferred meter and insulin

That I didn’t have to justify and fight for everything like how much insulin I needed or how many test strips I needed

The pharmacy I use treats me like a human and doesn’t make everything difficult

and especially when I call- I get treated like a human and have been helped every single time. 

I keep having moments that make me feel like I have truly made it- and make me so appreciative of where I am in life now- but also that growing up I had the time (Kind of) and knew how to advocate for myself because “I don’t play.” Advocacy is on a regular basis- the big and the little things- but it is almost everyday if you’re aren’t well off. I don’t think people realize this.

But a moment that truly hit me- when I realized that I no longer had to hoard (that doesn’t mean I won’t have backup) like I did before. I was able to combine several storage drawers of medical supplies into one set of drawers.

I don’t have to take up as much space. There would be less logistics. Less fighting. Less fear.

I sat in the middle of the floor among boxes and sorting and everything and cried. I cried tears of joy and relief. I was truly out of survival mode. I was secure.

This hurts my heart and fuels my fire and passion that stuff like this is still happening. That people are still in survival mode- which shouldn’t be a part of diabetes management (or other parts of life- not just diabetes). It fuels and has fueled my passion for advocacy and goals in life- the direction of my career. The part that has been angered that I had to deal with this and that people are still going through this. People are still fighting these same battles- well if they have the time and resources. 

and it bothers me that the advocacy to change  insurance, healthcare providers, and schools (and more)- isn’t a strong focus of advocacy.

But I’m also enjoying this lack of survival mode for a change. I have more time to be a proud trouble maker. I am hopeful for change, and I hope to be a part of it. 

Sincerely,

a *former medical supply hoarder and a proud trouble maker

Burnout of a Different Kind

Not related to this post- I recently created a facebook page for my blog. (It’d be awesome if you liked the page and invited/shared it with people to as well!) 

Last night, I couldn’t sleep. So I went to writing and ended up scheduling this post for what will be today- I’m going with mid afternoon. 

 

This isn’t burnout of the DOC. or writing. or my job. or even the management/diabetes itself. These are the things that are actually keeping me grounded. That doesn’t mean that my pretty intense moments of diabetes burnout aren’t serving as a reminder to make sure I have self-care. I also get nervous about diabetes burnout in management and such happening again.

It’s the logistics of diabetes. The constant logistics recently. But also the years of logistics adding up. With the addition of survival mode. 

 

Recently. I’ve reached my limit. After months of constant logistics. Then the domino effect for me- well it always is. I reach my limit with one thing and then everything bubbles to the surface- even things not related to diabetes. Or I’m finally done/out of survival mode and my body and mind go- let’s shut down or take a break for a bit.

 

I’m tired. I’m annoyed. I’m disappointed in the system. I’m angry. I’m confused. I’m in a pretty consistent state of WTF. 

 

 

Between having a hard time switching insurance. The logistics of switching (even though my current insurance is awesomeeeee). The process is a lot.

But then there’s just the logistics of having problems with my insurance for years and the reminder of survival mode and hoarding medications because of fear of the unknowns.

Then there’s clinical care. Finding an endo. I thought I found one. Lucky number 7. But he’s leaving.

So now I’m moving onto lucky number 8? In a little under 3 years.

It’s tiring. So many “dates,” and it’s not working out. Getting excited. Then getting disappointed. .

So there’s the process of finding a new one. Phone calls to cancel appointments and see if maybe you can stay at the same clinic. Moving clinics is an entire extra set of steps. Asking for input from people you know in the area. Doing research. And wanting to balance your professional life with your health.

I do have an appointment now. Hopefully this one works. Needless to say, I definitely freaked out about having to find another endo… again… I’m now joking that I’m cursed. 

Then there’s getting to know each other. And going through all the motions and sharing your health history. Again. And hoping for the best. Again.

People tell me to settle and I won’t.

I know I only see this person for 15 minutes to a half hour every 3 or 6 months.

But I don’t want to dread appointments.

And as we know stuff comes up between appointments. I need someone on “Team Mindy.”

and having someone on my team is important for several reasons, like supplies.

Well my forms didn’t get sent for my pumpsites. But when I called that was fixed day of and sent overnight.

Then my pump stopped accepting cartridges easily. I completely avoided that for over a month because I didn’t want to deal with it. But when I called. I got a pump sent overnight. (I love Tandem customer service.)

But for about 3 months. I’ve been having issues with Dexcom.

First timing wasn’t on my side. The transmitter battery went low as I’m switching health insurance. Then the letters went out about alarms.

Awesome. 

Then mistakes happened along the way. And long story short. I’ve had to fight. Fight for answers. Fight for action. It’s still not over. But I think it almost is. Finally.

And I wasn’t happy that I had to fight so hard and use connections. Which I expressed and was connected to people to hear me out. Which I really appreciate. Being on hold doesn’t bother me too much. I understand when growth and circumstances, but I have a limit

 

But that doesn’t mean that it’s still not exhausting. All of the calls and research. To them, to my insurance, to my doctor.

Especially when my relationship with my CGM is already complicated. But it’s improved over time. 

And having to share with people what’s been happening again and again. Which is helpful for venting.

And having to explain again and again that I don’t want the G5. Or have it connect to my pump.

 

I’m just burned out on logistics. I’m burned out on explaining and sharing what happened, my history, hoping that things are handled, switching things and making calls, etc.

Hopefully it’ll be over in the next few weeks.

I fully know I have not been in the best mood. And I’ve been venting the same thing again and again the past few weeks. Well even months for some things.

But. After years of not finding the right people. I have.  Even those without diabetes.

I’m grateful for those who’ve offered input and let me let it out.  I probably would have completely flipped out on someone by now if it wasn’t for them.

I’m hopeful for a break in sight. Or my upcoming vacation in a few weeks. Whichever comes first!

But. I am most definitely burned out concerning logistics associated with diabetes-wait not just diabetes there’s so much more out there that requires constant logistics too (for those living with it and the people in their lives). I think it’s something that people don’t fully realize on the other side of the phone or in a doctor’s office or in whatever situation you find yourself in. I don’t know if I can demand people to understand it- but I can at least be upfront and vocal. 

 

Well that was a healing post. I feel better after writing that out!

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(Example of self-care. Yay for coloring!)

Not related to this post- I recently created a facebook page for my blog. (It’d be awesome if you liked the page and invited/shared it with people to as well!) 

Diabetes UnConference, Fitting for my 100th Post

Not related to this post- I recently created a facebook page for my blog. (It’d be awesome if you liked the page and invited/shared it with people to as well!) 

I had realization recently that I was at post 99 and about to hit post 100. That’s a milestone right? How do you commemorate that? or do you ignore it? What do you do? 

Well. I don’t have it all figured out. I’m still learning and growing. But in 100 posts- in about 3 years- I’ve changed and grown a lot. I’ve had some ups and downs along the way.

So what do I cover?

The Diabetes UnConference and how it also represents all of the change in 100 blog posts. DUH!

A few weeks ago, shortly after my 16th Diabirthday, I made my way to Las Vegas for the 2nd UnConference and my 1st. I had some guesses of what to expect from people who had attended before, but I also had no idea at the same time.

and long story short, I had an amazing time. Reconnecting with some people and meeting some people for the first time. This conference has the “what happens in Vegas, stays in Vegas” mentality- translated to the conference- it means that it was a safe place for people to open up- and it was.

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I felt like the UnConference was “Diabetes Camp for Adults.” I had so many of the same sentiments that I have not just as a camper but as a volunteer too at Diabetes Camp. The amount of “me too” in the room made my heart full. For me it doesn’t matter how many times I hear or feel that, it’s strengthening every time. 

I also really enjoyed the fact that no one was “talking at me” which I feel like happens SO much when it comes to Diabetes. We all talked together- about our experiences- our tips and tricks- and everything in between. and I enjoyed the break from my phone and social media.

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But for me- and what really makes this blog the right fit for post 100 is opening up about the good and bad. 

Over the past year, I’ve worked really hard on practicing being honest about the good and the bad. For so long, I would only acknowledge “the good” outloud, often leaving “the bad” to just myself and maybe occasionally the people in my inner circle.

But that’s not life. 

We are surrounded with images of perfect CGM graphs that are usually conveniently zoomed in to show only the straight line in range. We only hear about the triumphs and how you have to prove everyone wrong and never let Diabetes stop you. Often only hearing people from certain walks of life, SES, and no offense- but mostly parents (even though their voice is needed and important).

I know that I do this too even though I try not to.

This is not accurate of real life. This happens not just in Diabetes though- everyone does it.

I want to hear from all types of people living it everyday- in addition to all of the people in our lives. I want to see that CGM graph that has all of the mountains and valleys. I want to hear about how much it sucks and can add some obstacles. And that it’s okay not to be the biggest and the best in life to prove something (it’s great to have that too- but not everyone is an athlete or a celebrity- where are my kickass people living their lives?).

I want to see and hear about real life. I want to have the “me too” mentality all the time like at the Diabetes UnConference. That conference was a representation of real life- packed with amazing people in a few short days. Low treatments everywhere. Water getting chugged and insulin getting delivered for highs. Talking about the little things and the positives. Talking about the system. Talking about the bits that suck.

That’s real life. I want that represented. I want #shittygraphs (aka #reallifegraphs) to be what we see and share. I want to practice that. I’m still working on that- in my writing and in real life.

See- I struggle to open up. It takes pushing, time, and reaching my limit for it to actually happen- and often that only happens in writing. I’m not so great at expressing myself with words- I struggle to- I have to fight through and break down walls to do so. I often don’t know what words to use. People often have to pry into me. I don’t know how to vocalize anything besides anger or happiness very well. This introvert also finds it exhausting, and I get an emotional hangover/emotionally exhausted quickly.

But I’m working on that and have been since I entered college. I’ve definitely improved, but I have a ways to go.

But at the UnConference. I did something that was not characteristic of me. I opened up. I opened up to some people I barely knew or had just met. and about something that’s “not so great.” and I wasn’t forced. I even cried in public and saw the high BG spike that always happens come with it. I found other “me too’s” that weren’t necessarily related to Diabetes. It just happened. I did of course feel uncomfortable and that pesky emotional hangover- but that was coming from within myself- not the people around me who made me feel safe and respected. and I did feel better afterwards (after the emotional hangover faded and my BG came back down). I hope to do this more often- in person. 

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So here’s to an amazing experience at the Diabetes UnConference (I can’t wait to go again) and here’s to 100 Blog Posts. Here’s to the next 100 more (that will come a little faster now that I am regularly blogging).

Thank you to everyone I met. Thank you to everyone who made this possible. 

Here’s to being open and true and you. and finding the tribe that will welcome, support, and encourage it.

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Not related to this post- I recently created a facebook page for my blog. (It’d be awesome if you liked the page and invited/shared it with people to as well!) 

The Marks It Leaves Behind

Not related to this post- I recently created a facebook page for my blog. (It’d be awesome if you liked the page and invited/shared it with people to as well!) 

We live in a world with pressure to fit in. The pressure to abide by beauty standards and social norms set by certain groups.

When truth be told, it’s already hard to fit those norms- adding anything (like diabetes) makes it even harder. I tell myself I don’t care to abide by social constructs or don’t want to fit in, but that doesn’t mean those standards don’t impact me in a way. Or remind me that I have a chronic illness.

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I would never say I’ve constantly been self-conscious about the marks that Diabetes leaves behind. I’m definitely aware of them consistently. But being self-conscious comes in waves. For me it’s not about the actual devices or the medical ID…

It’s about what Diabetes leaves behind. The gentle (or not so gentle or annoying or upsetting) reminder that brings you back to reality that you live with a 24/7 chronic illness.

I remember a time when I was very self-conscious about the feeling of my finger tips and “the little black dots” that fingers sticks left behind in my pre-teen to mid-teen years. Adding to the toughness and the need to move it to next level of strength as times went on. I went through a phase of getting hot wax on my hands and exfoliating the tips so that the “dots” weren’t as prominent and the tips didn’t feel so hard and rough. I also hesitated to check as often because I didn’t want to add to it. This feeling eventually faded away (for the most part). Especially when I reached the realization in high school that I was leaving and didn’t care what anyone thought anymore. I also realized- I can’t keep up with this. Checking your blood sugar 5-10 times per day for x amount of years leaves some marks.

More recently, I have become self-conscious by the marks that the CGM leaves behind. And I have realized the longer I leave it in, the more prominent the mark is. It eventually fades, but not before another one comes to take its place. But there’s also this giant patch of tape to make my CGM stay on which dries out my skin and takes several days to return it to its normal state.  And the return I get for a longer CGM and spending less money is worth it for the mark- but that doesn’t mean I’m not paying attention.

This also led me to pay attention to the marks that pumpsites leave behind. That leaves areas freckled before I rotate to the next spot.

And I can also see remnants of allergic reactions on my stomach. And can feel the scar tissue on my legs and hips from favoring those spots for pumpsites growing up (they have a point when they say to rotate). You can feel the tough layer underneath. But you can also feel the roughness of the skin. And a reminder that I made it through the teen years (and through the teen years with diabetes).

And no matter what healthcare or beauty regimen you take, getting the marks to go away is difficult/takes time and preventing them from happening 100% of the time is not possible.

and we wonder why (and even judge) why some people might not want to be attached to medical devices… and even why some people decide to be as discrete as possible… and we rarely factor this into everything going on in the teen years…

I have moments of waves of being self-conscious of the marks diabetes leaves behind. It ranges from wishing I had rotated better to wishing the marks and reminders would fade to wondering what people think when they notice them and finally to wishing that diabetes was not a part of my life.

But more than anything the marks are a reminder. Even those precious moments where you are device free or you might even forget for a moment what you have, you can see and feel the marks that remind you- you do in fact have T1D.

Wounds heal, but not all scars fade. (but not all scars are visible). 

But the marks, the scars even, serve as a reminder-

A reminder of the strength that comes with managing this disease 24/7.

A reminder how far technology has come.

A reminder that there are good and bad days. 

A reminder that it’s just data.

A reminder that if (well probably when) complications come my way, it doesn’t devalue me or take away my effort. It doesn’t stop me from living life. 

A reminder that I made it through the teen and college years.

A reminder that I can’t be perfect.

A reminder that no matter what’s to come, I can get through it.

A reminder that I am more than diabetes.

A reminder that there are people who “get it.”

A reminder that I’m the one living with Diabetes even though I know it impacts others in my life.

A reminder that the person judging me or the healthcare provider being critical, doesn’t really know me. 

A reminder that there’s a story behind those marks.

A reminder that I’m human, a person first, with emotions and a journey to travel.

 

Diabetes is technically an invisible illness- disability- that is made more visible with taking care of it in public. Wearing a medical device or ID bracelet.

But also by the marks it leaves behind. No one can dispute a visible mark. No one can say that Diabetes is nothing or that you’re faking it- when you have proof on your skin.

and I feel like this doesn’t just apply to Diabetes. Many things leave marks behind- and not even necessarily from a disability. Marks come from many other aspects of life and serve as reminders.

The marks it leaves behind- are another part of Diabetes- the good, the bad, and a reminder. Maybe consistently or just on occasion.

 

Not related to this post- I recently created a facebook page for my blog. (It’d be awesome if you liked the page and invited/shared it with people to as well!) 

Why (I Think) It’s Important to Have a Good Relationship with your HCPs

Why (I think) it’s important to have a good relationship with your HCPs (healthcare professional/provider). 

I’m passionate about a lot (if you couldn’t already tell). Over the past few years though, I’ve become passionate about the importance of having a good relationship with your healthcare providers.  I say providers because it goes beyond Diabetes, beyond endos and CDEs. It’s your general practitioner. It’s your psychiatrist. It’s your dentist. It’s your eye doctor. Etc. Etc.

My goal is to find a Diabetes care team that gets that there’s more to me than Diabetes. On the other hand, I want everyone else to understand Type 1 Diabetes. I’ve talked often about my journey trying to find the right fits, but that’s not my focus for this post (it will come in time!). I want to focus on why it’s important to have a good relationship. I will primarily focus on the Diabetes, but it applies beyond that.

 

I never expect going to the doctor to be an amazing experience like going to Disney or Camp, but I don’t want to dread appointments (or have the desire to cancel them/not make them). I’ve found that if I don’t have a good relationship with a HCP, I dread appointments or am very inclined to cancel appointments (hey, sometimes it’s all on me).

So if you don’t get along with your HCP when times are good/okay…. What happens when things aren’t? What happens when you’re going through Diabetes Burnout? What happens when you just don’t feel like it? What happens when life happens- like college or stress or a death in the family or other mental health related experiences? What happens when you have supply or insurance issues? Would you feel comfortable talking about all of that and everything in between if you don’t feel comfortable with them during the not bad times? They’re bound to happen.

Would you feel comfortable asking for help? When something isn’t working? When your insurance is giving you hell?

Do you feel heard? Do you feel respected? Do you connect with them?

Do they get it? Do they get you? Some people really don’t get it. Some people may be great at what they do, but you don’t click. Some people may have all the credentials, but maybe they have a “God Complex” or don’t understand what it’s like to be a teen or a young adult. Some don’t get that there are other parts to life.

I feel like finding HCP is like dating/shopping.

If you find an outfit that looks great on the rack, but when you put it on, it’s not flattering or you don’t like it or it seems to expensive… Are you going to still buy it (granted- some people will).

If you’re dating and it’s just not working, would you keep dating that person? (granted- some people will).

You have permission to walk away from HCP’s that don’t fit. or don’t respect you. or don’t get it. I would like to note that due to insurance, SES, location, and other factors… this might be difficult or not possible.

But don’t forget it. I have a two strikes you’re out rule, but most likely…. your gut will tell you round 1.

Everyone is different. Including you and HCPs. 

There’s already so much to Diabetes- a lot of not so great things- I think a bad relationship with your HCP should not be a part of it. They should be there for you. You should be able to work together for your health. (and they should even sometimes give you a respectful reality check when you need it).

I want someone I click with. That I feel comfortable with during the good and easy times so that when times are rough or something bad happens, I’ll be more inclined to not cancel appointments, be honest, reach out for help, etc (not to say that I’ll always do this- it’s a struggle of mine).

I want to feel comfortable. Now, I don’t expect to be besties or anything. But I want to feel comfortable and respected. I want to get along with my HCP.

Now- I think it is incredibly important that all of your health needs are met.

Don’t be afraid to stick up for yourself. Don’t be afraid to move on. This is your health. You’re living it everyday, not the HCP.

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16 (Diabirthdays and counting)

16. It’s a sweet 16 (hehe punny).

16 years. 

16 years… I’ve been thriving with Diabetes for 16 years now. Diabetes has been along for the ride. It’s my 16th Diabirthday.

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I’ve gone from the days of NPH to insulin pumps to CGMs and everything in between. I’ve heard about the days before glucose meters and when people had to boil needles. (and so much more.) 

What do I talk about today? Do I revisit my diagnosis? Do I talk about my accomplishments? Do I talk about the good? The bad? and the in-between? 

I’ve been promised the days of a cure are 5 years away or 10 years away ever since I was diagnosed. But 16 years have come and gone. But around my 10th Diabirthday… I became jaded when it comes to talk of a cure. But this kind of jaded is good for me. For some people it’s all about using the hope of the cure to get them through each day. (which is fine) For me, that leads to disappointment. Diabetes is the one instance of my life where I live for today. Instead of a cure, I get excited about the things that are happening to make my day to day life easier and easier. I watch people and groups get angry about 100% of everything not going towards to a cure.

I mean.  I can understand that. I don’t understand hushing other voices who might not agree (and that applies to all aspects of life and Diabetes). But I’m not. Because if we were only cure focused- where would the CGMs be? Where would camps be? Where would glucose meters be that take less blood and time? Where would the support and changes to clinical care be? Where would we be with advocacy and change? Where would awareness and education be? Where would my friends be who want to start families?

If I was only cure focused or there weren’t any advances… life would be very different. I think I would be personally setting myself up for disappointment when the cure didn’t come. I wouldn’t see people finally talking about the fact that we need to talk about mental health and diabetes more. I wouldn’t watch the fact that I have a pre-exisiting condition be not an okay reason for me to not be able to get health insurance. We might still be stuck with the glucowatch instead of the current generations of CGMs. 

So yes- a cure would be great. and there’s always a part of me that holds onto a little bit of hope that the cure will come, someday. Maybe it will come in my lifetime, maybe it won’t. But I’d rather strive to make my day to day life easier in the meantime. I’d rather strive to do the best I can because I have one life and one body. 

I’m not just going to wait for a cure and throw all my eggs in one basket. 

I’d rather see more people get 50 year medals for living with Diabetes and that they are living happy and healthy lives.

I’d rather see more opportunities for people to thrive.

I’d rather know that clinical providers, parents, and anyone involved in the life of a person with diabetes remember that there is more to the diabetes. That the person isn’t just Diabetes. That there’s more going on. More to the story. 

I’d rather see access to supplies and resources become easier for everyone no matter where they are or what their status is in life.

I’d rather see more improvements to health insurance.

I’d rather see more advocacy, education, and awareness.

I’d rather have pumpsites that last longer and whatever means of management that we haven’t even imagined yet make lives easier.

I’d rather that more gets done about mental health and diabetes.

I’d rather there be less stigma for both types. And more community.

I’d rather see that people in and outside of our community had more understanding and were not as judgmental- because everyone is so different- different beliefs, views, methods of managements, points in life, mental health, access, socioeconomic status, etc. etc. (Your Diabetes May Vary). 

I’d rather that we look hard at perfectionist tendencies that are encouraged. and that the marks of proper diabetes management mirror markers for eating disorders.

I’d rather we look at the shame and fear and guilt that happen for everyone involved.

(and much more)

I’d rather have changes and improvements. Sure- a cure would be great. But it’s not here yet. In the mean time, I have a life to live. 

I’m grateful for so much and for so many people in my life who help me to thrive each day; friends and family, for peers who get it, for people to look up to, camp, my job at the College Diabetes Network, the DOC, technology, change, Dawgs for Diabetes (a chapter of CDN), clinical providers that care, the voice I have, for my “diabetes cat” I got shortly after being diagnosed, and so much more.

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I wonder what 17 years will bring? I wonder what will change by then? In my life, the world, and Diabetes?

But, I have my traditional red velvet cupcake to get to and some cold medicine (because of course I’m sick).

Full disclosure-

I do consider myself to be a sassy and persistent diabadass

(and a badass in general)