Why I Live for Today- in terms of Diabetes- a contradiction in my life. (so much talk of a cure)

In all honesty, I’m terrible at that whole live for today concept. I live by a John Mayer quote- “People say: ‘live for today’. I don’t think it’s right. You gotta live for the big picture.”

It’s really how I feel. I LOVE looking at what is ahead for me. When I’m stressed or upset; that light at the end of tunnel keeps me going. It serves as a reminder for why I am working so hard, and why I am putting in so many hours. It’s nice to think about when my hard work will pay off, or the next phase of this journey we call life. I also do like to look back on occasion and see how far I have come and how much I have changed and where I have been and where I have met.

I know I need to enjoy life’s little moments, or big moments, and I have gotten better at that- BUT I still live for the “big picture.”- and I wouldn’t have it any other way.

I love Life’s Contradictions- well fun ones; hoodies and flip-flops, converse and dresses, etc etc.

But throughout my life, there has been one glaring contradiction that relates to Diabetes. Diabetes is the one place where I live for today in a sense. I have my whole life, and as I have “dealt” with my changing of plans for after graduation and with everything Diabetes News related, I have realized this fully.

When it comes to Diabetes, I live for today. I have to. I cannot focus on that cure supposedly coming down the track. I cannot put all of my “eggs in one basket” because I will be so focused on that I’ll miss out on what I might need.

When I got diagnosed in 2000, EVERYONE in the medical community kept telling me that a cure would arrive in 10 years when I was 17. When I was 14, I knew that wasn’t happening. Stem cell research had come to a halt, other possible cures had not worked or the complications were way too much. So my 17th birthday came and went, my 21st birthday is about turn into my 22nd birthday before I know it- and a cure- it’s still not here? But I have watched the news before my eyes; test trials are going on; new breakthroughs, etc etc. But honestly, I think of a cure as that date that stood you up, again and again, and you told yourself ‘this time will be different.’ But it’s not. It never has been. Someday, who knows when, there will be a cure I am sure- that new date who proves you wrong and shows up (early).  But scientific progress or new findings do not guarantee us a cure right now or even “soon.” I think it’s cool to watch and be up to date- but I cannot and will not say “this it- my cure is coming.” Because realistically, I don’t think it’s here yet. Research is definitely on the right track, but we are not there yet. not too mention all of that red tape and policy and making sure it is all okay- especially in the US, takes A LOT OF TIME.

Sometimes, I feel like the Diabetes community (and other people in general- ESPECIALLY the rest of the world) gets so caught up in a cure, they forget about the people and families who are living with Diabetes 24/7 right now. They forget that there is this whole mental health side to Diabetes. They forget that teens and young adults are still here. We are still living with Diabetes.

But we also forget all of the scientific advances that have been made- I would NEVER take a pump vacation if there hadn’t been a huge change; Regular and NPH anyone? being the only choice anyone? Now I can take a pump vacation. oh yeah and I wouldn’t have POLI- which I LOVE. I don’t have to change the code every single time I open a new bottle of strips. Meters have lights and can take less than 5 seconds. Pumps can calculate your insulin for you. You can have sweets! CGMs. and so much more. I am benefiting, along with many others, from research and breakthroughs that are not a cure- maybe looking for a cure lead us there- but my Diabetes management and even my mental health has benefited from all of that- and I won’t forget it.

I think if my parents and I put all our focus on a cure, I would be a different person today. Instead I have focused on taking care of myself because who knows when a cure will come. I don’t want to wait my life away waiting for a cure; I have stuff to do. I have places to see. I have Dawgs for Diabetes and the College Diabetes Network to be a part of. I want to make sure that teens and young adults don’t get lost or left out of the Diabetes community. I have little moments to enjoy. I have ideas and hopes and dreams I want to follow and tackle with my clumsy grace. I have a CASA kid in foster care who needs me. I have school. I have a big city to move to soon. I have to travel. I have to meet new people- AND SO MUCH MORE.

and if I focus on that cure- would I stop trying to take care of myself? Would I get so hopeful, and then possibly let down because a cure didn’t work- I feel like that happens a lot for people- and your mental health takes a hit.

I’m not saying- don’t get excited- by all means get excited- but use your critical thinking and make sure that’s not the only thing you are living for in terms of Diabetes Management.

I’m not saying don’t stay up to date. Be informed. that is SO important.

I’m not saying there won’t be a cure. There will be- SOMEDAY.

I am saying- please don’t send me articles that say Diabetes is cured; or article after article. I might like to just talk to you? Instead of just speak in Diabetes Articles- feel free to send them- but maybe ask how I am doing or tell me how you are doing?

Because honestly, I have probably seen and read it; I am VERY involved in the Diabetes Community, and I read the news (from many different sources- always check EVERY bias).

I like to think of it in the view of People’s First Language- I am MORE than a possible cure. I don’t know when that cure will be. In my lifetime? I really don’t know. But until we have one, in terms of Diabetes management and self care, I need and have to live for today.

Until next time!

-Mindy

It’s just data.

D4D Newsletter

I have elaborated on a few of these. Enjoy.

I’m more than a number.

  • a1c, blood sugar readings, blood tests don’t tell the whole story. These are just numbers that guide me to better Diabetes management. I am not simplified to a little number on a screen. It’s just data. This is NOT a reflection of who I am as a person or even the work I put into my Diabetes management. I cannot be belittled by a number. I cannot put everything into one number. I cannot let this reflect the value of myself as a person. There are no Good or Bad Blood Sugars….

I’m more than a future possible complication.

  • Enough Said. Please do not tell me how I am going to (insert possible complication here) in the future or because of one blood sugar.

I’m more than my diagnosis.

  • Getting diagnosed on my Diabirthday was not the end of the world. It was not when I would stop living- it was when I started. That is where my life begins- it’s one of my first memories that are clear as day. BUT. That is not all of who I am. I got diagnosed with Diabetes- but I am LIVING and THRIVING with Diabetes. There is so much more to me.

I’m more than a Diabetes joke.

  • KitKat lasagna- DOES NOT MEAN DIABETES. STOP THAT NOW.  Pan of cookies does not equal Diabetes. I could keep going. These are cruel and mean and ignorant and so much more more. Just stop. Stop the jokes. They are NOT funny. Educate yourselves.

I’m more than an insurance policy.

I’m more than a dollar sign.

I’m more than a statistic.

I’m more than a “sad story.”

  • When I send my JDRF, Camp, or D4D letters to get donations. I briefly mention how many times I have to check my blood sugar or change my site. Honestly- that number surprises me. I focus on all that I have accomplished. My focus isn’t despite having diabetes. I just share all that I have accomplished. This is NOT despite diabetes. These are just my accomplishments. I don’t want people to feel bad for me. I don’t want them to say look at what she has done even with Diabetes. I want people to say- look at her accomplishments, and we should offer our support because she is so passionate about (insert here).

I often find myself thinking this when I interact with the world, but I also needed to be reminded sometimes. I can get caught up in numbers and comments and insurance nonsense, but there’s more to me and Diabetes than that.

 

Plans Change! Why I did. (Part 2 of 2)

Part 1 of this post!

“That was that. I had my plan. My plans don’t change much unless I have room for them to change. Well- until this summer when I decided to change my plans- well actually I delayed and kind of changed them. AND for those who do not know me. I like to plan and I do not like to change plans. This hasn’t been easy, and I’m still adjusting. “

I’m still going to a major U.S. city in the North after I graduate. I will be going to Law School, but not right now. That’s the change. I changed my plans without another plan already in place, and for those of you who know me- that is a scary thing. I did A LOT of thinking this summer- after going back and forth, making lists, talking with loved ones, thinking, research, and so much more- I made my decision.

A lot of people mentioned taking a break before law school, but it was never on my radar. I didn’t want to lose momentum. The question of health insurances is ALWAYS on the brain; Diabetes will do that to you. And it’s what I wanted to do.

Well, after Junior year of college- honestly probably harder than my Freshman year. The combo of Diabetes Burnout and school work and how busy I was all added up. I started to feel burnout on school; I was over it. I was ready to be done. I was ready to graduate. But in my head I wanted to keep pushing through.

This summer- I realized that might not be so good. If I am burned out right now for senior year, how am I going to feel about 3-4 more years of school? Not just school- law school and grad school!

I took the LSAT, and according to the world- I did pretty well. BUT- to my standards, I didn’t do as well as I wanted to. I want to do well enough to not just get into a top 50 (Tier 1) Law school, but I also would love to get as much of it paid for as possible.

This summer when I got my scores back, I decided I wanted to take it again. The next test is in October, and I wanted a break from studying for it. I also couldn’t imagine studying adequately with everything going (including feeling better). I will be taking the LSAT in February as of now- I do not want to take the LSAT during my year or so off. I want a complete and total school break.

The Thyroid stuff didn’t help at all. My new endo is thinking Thyroiditis, and she feels bad that nothing was done until my number got back to normal which is recent. From what I’ve read and hear, it takes a while to get back to normal.
I’m starting to feel better. My hair isn’t falling out like it was. My skin isn’t as dry. I’m not getting as over-heated. I stopped taking aleve (for sleep and so I wouldn’t ache and feel crummy during the day). Exercising isn’t painful- I am getting my strength back. I’m not feeling as anxious. I still have problems focusing- but it’s better. Plus so much more. I’m not all the way better, but I’m on my way- it takes a while. I kind of threw myself into my normal pace a little too quickly. But I wanted to get back to normal- well my normal. I cannot imagine studying for the LSAT and applying to law school when I still don’t feel all the way better- and what if it takes a while to get there? I want to make sure I study adequately and fully for the LSAT, and I want my applications to represent me correctly.

There is also so much going on this year. I feel just as busy as ever even without my part time job. Dawgs for Diabetes is taking off. My senior year with classes and internships is crazy. Plus the other things I am involved in, and hobbies and such. 
As I am thinking about it- I cannot imagine applying to law school or taking the LSAT right now. Instead I am throwing myself into Dawgs for Diabetes and other activities I enjoy. I’m making sure I relax.

This is what I need to do in all honesty. It feels right to me. For some, it took people a lot of convincing that law school was the way I should go- because it wasn’t in their plans or their views- sorry too bad. But now they have to be convinced of this again? Some people accepted my major (Social Work) because I was going to law school, and now they are questioning this because I am not going right away.. I enjoy my major thank you very much. My career/life aspirations are “too liberal” “why does it matter?” “you won’t make any money” “the north is not the place for you/why would you want to move to the city?” Well too bad. Are you me? Is this your life? And typically- did I even ask you?

I’ll follow my own dreams and “plan changes,” shouldn’t you think about focusing on your own?
“Let the refining and improving of your own life keep you so busy that you have little time to criticize others.” –H. Jackson Brown JR

Making this change is hard enough as it is honestly. I’m still accepting it myself. I’m still adjusting to making a change without having a plan already set. I have moments where I freak out a little bit still, and they have become less frequent than this summer. That’s how I live my life. Everyone says you can’t plan your life out- well I try to plan a lot of it out as much as I can. I have always accepted there are some things you cannot control, but I enjoy planning. I enjoy working towards something.

Someone in my life told me that they are more proud of me for this decision than they would be if I had gotten into Harvard Law school- because changing plans is hard for me, and I am doing what I need to do for myself.

But having people making comments and judgments and disapproving- it’s a little hard. I do typically run with I don’t care what others think. It’s true to an extent. I don’t really care about what the world thinks. But it can still hurt- especially coming from people in your life that you care about.

I am tired of having to justify myself. Explain myself. Hear that someone found out and passed judgment. Decision made. No offense- but what you have to say won’t change my mind. My mind is set.

It’s a little hard thinking that right now- in my plan- I should have been applying to law schools right now (or early October- depending on when applications open). It’s also hard because I keep getting emails from Law schools- some even on my list- telling me to apply, that my application fee is waived, that I already qualify for scholarships and grants. Until later right?

I have some ideas; there are definitely some solid and hopeful options for my time off. – and I cannot wait to explore them and find out more about them. I have hope and  hopes for my time off. I also haven’t set a time frame yet- it depends on what I end up doing. I want to make sure that I am making a difference with my time off in a city doing something I enjoy- and that’s what matters.

Who knows exactly where I will be in a year? And in all honesty- It’s terrifying and exciting all at the same time. But that’s how life can be. All I can do is try my hardest and make a new plan over this school year. Let’s see what comes my way. (while I still freak out and adjust to not having a plan at the same time).

Stay tuned for updates! I cannot wait to share when I do have plan!

-Love, Words, Inspiration, and Insulin! -Until next time! and Until We Have a Cure!

Plans change? What lead me here- (Part 1 of 2)

 

Plans change right? Things happen and you need to adjust? That’s part of life, right?
That’s not typically how I “roll.” Basically I have planned out my future for as long as I can remember, and besides right now- I have only switched once, at least for major plans. I don’t remember exactly how long I wanted to be a vet, but I wanted to be a vet since I was a child until the age of 14/15 when I realized that two subjects, science and math, were not my thing. Not that I cannot do math or science, and not because I am a girl who was “taught” to not be into it. I realized I did not enjoy it, and how was I supposed to be a vet while disliking science and math. Yeah- NO. My love for animals still has not changed, but I do not want it as a career.

As I realized I did not want to be a vet, I started to realize my other passions and strengths. I started thinking about what I had done up to this point in my life. These were not a certain subject in school, but some subjects were geared towards what I wanted to do.
I am FOREVER grateful for our theatre director. I chose theatre on a whim. I did not intend on continuing with theatre after I took introduction. I wanted to be more outgoing, and many said a theatre class was the way to go. Needless to say, I feel in love, and I stayed in theatre for all four years of high school. I started to get more involved my sophomore year. It took the quite girl who never spoke, and changed her. I consider myself to be an introvert in some situations, and an extrovert in other situations. It really depends on where I am, what I’m doing and who I’m with. I developed my skills as a speaker which I still utilize to this day. I had a group of friends. I was receiving constructive criticism and an adult who believed in me at the same time. Theatre gave me so much more though. I could go on forever. Theatre and Band- shaped my high school existence, and who I am today. Although I have not continued with those things in college I still appreciate everything they gave me.
My sophomore year, I was also in an AP Government Class and an AP Language class. These classes, and my AP Lit class from Junior year, truly prepared me for college. I was pushed in both of those classes. I was encouraged and again given constructive criticism again in these classes. AP Lit and AP GOV scared me and pushed me to my limits. AP Language did this, but we also had to give a speech on a topic, and although I did crash and burn because my subject was all over the place. I realized I enjoyed speaking. In AP GOV, I realized that I did enjoy history, but I REALLY enjoyed the topics of government and law.
I am not sure I have written my AHA moment for sure- and I will look into this- if not, I will provide a more detailed one later on.
Sophomore year, because of a multitude of factors, my mom and I got the head nurse in hall county involved in school because we needed a space for Diabetes supplies- but not just Diabetes supplies. Diabetes is not the only thing in the world. Literally, no one had a place to go if something happened- no one had a safe place to store supplies. That changed. We got a part time nurse, a room, and a fridge for medical supplies. What? We also had a meeting with other students with Diabetes in our school. We talked about a lot including but not limited to; 504 Plans, safety, stigma, and much more. The feeling I had after all of this was life changing for me. It felt so good to have done something that I didn’t just benefit from.
Through that situation, and my classes, I realized what I wanted to do. I had an AHA moment of sorts. That AHA moment was that I needed to go to law school so that I could be an advocacy lawyer. Over time I realized that the right major would be Social Work, and that is still my major. It took a while for some of my friends and family to get on board, and some thought it was perfect for me.
I would go straight into law school after undergrad- that was the plan. I wasn’t sure exactly where I wanted to go, but I knew a major city was where I needed to be. I knew I would need to like the schools I would be attending, but how much I get would be a determining factor. I wasn’t set on undergrad, and in the end it was between Iowa State and UGA. UGA won in the end- in state tuition, HOPE scholarship, and the fact that I had wanted to go to UGA since I was young all made my decision easy when I received my acceptance.
That was that. I had my plan. My plans don’t change much unless I have room for them to change. Well- until this summer when I decided to change my plans- well actually I delayed and kind of changed them. AND for those who do not know me. I like to plan and I do not like to change plans. This hasn’t been easy, and I’m still adjusting.

Part 2

-Love, Words, Inspiration, and Insulin! -Until next time! and Until We Have a Cure!

Wait. Where did August Go??

I’m a little in disbelief right now. How is it already September 5? How did I just complete my 3rd week of classes, and better yet survive? How am I already into my senior of college with the real world right around the corner? I find myself asking is this real life?

Spoiler- I will not be going straight into law school- more on that to come- with my experience about getting ready so far- Law school is just delayed for now.

My schedule for the next 9 (well 8 now) months-

  • Monday- 8-4 Internship
  • Tuesday- 8-4 Internship
  • Wednesday- 9-3 Class
  • Thursday 12-4 Internship
  • Friday 9-1 Class

This does not include the meetings I have sporadically on Thursday mornings. Dawgs for Diabetes. CASA. Camp For a Cause (now that I can be more involved). A Social Life. DSAB. JDRF. CDN. Camp Kudzu things. etc etc.

What’s missing?

…………….a job. BUT- after being on constant freak out mode since I “lost” my job in July. I am now enjoying not having a job. For the first time in forever- I am not working (I include babysitting). Don’t get me wrong- I am still looking for a job, but I am no longer stressing. I am enjoying it. I forgot what a real weekend was, and it took a little adjustment. But I can devote times to other things- and you know I am just as busy as always.

Senior year with social work? It’s a little crazy. This has been an off week for me- procrastinating like no other. Time management I do okay with- but my workaholic in training tendencies are my problem. I also realized that everything I do has social work flavor to it- and without my job I’m not taking a legitimate mental break from everything. So I need to figure that out. The problem is I enjoy things social work related- so I’m in the right major.

I have senioritis- but THANKFULLY- I am in a wonderful placement for my internship- apparently the professor knew where I needed to be more than I even knew. So those 2.5 days a week will tide me over in my 2 full days of classes right? I’m registered for 17 hours of classes- 11 spent in class during the week and the other 6 for my 20 hour internship. But so far I really enjoy my internship- I also feel that I am going to learn SO much and gain so much experience from all sides of social work! I also really enjoy my International Social Work Class! So it gets me through. Sundays MUST be school work day- what I keep telling myself.

Dawgs for Diabetes? Well honestly- this is OUR year- I am so excited to see where my last year with D4D will take us. I am even getting comfortable with delegating (shocker).

Not knowing where I will be next year by spring semester is slightly scary for me honestly- I have always known what is next- but now with law school on hold- I am not sure. I am even toying with the idea of also getting my Masters in Nonprofit Management? Who knows- What I do know? I WILL be in a major city in the northeast.

I’m supposed to be studying right now- but I decided I needed to post so I could expand on law school soon- luckily my roommate is in a productive mindset- she encouraged me to come, and hopefully the productivity rubs off on me? We’ll see. Friday is a struggle- but with a coffee in my hand and a good atmosphere who knows what I’ll get done- I mean I finally cranked out a post right?

 

Blog posts to come

  • Why I love the DRC
  • Law School planning experience
  • What’s Next?
  • Diabetes Burnout
  • Why “adults” need camp

-Love, Words, Inspiration, and Insulin! -Until next time! and until there’s a cure!

Camp Twitch and Shout and Camp Kudzu Session 3.

so- I’m a little behind on writing this post- but that’s kind of the story of my life- I’m hoping when I get back to my schedule and get back on top of things- I’ll be better at this.

To say that I absolutely loved my experience at Camp Twitch and Shout would be such an understatement. From arriving for training to getting to know the amazing campers to even airport duty- everything was such a life changing adventure.  From the get go, I felt welcomed by everyone the moment I got there. There was a lot of similarities between Twitch and Shout and Kudzu, with a few differences as well.

I had no idea I would learn so much about Tourette’s Syndrome. I’ve also found a blog you should check out-

https://www.facebook.com/pages/A-Little-Bit-Different-Tourettes-Syndrome/164459540340080

http://alittlebitdiffrent.blogspot.com/

I realized I have a problem now- I feel in love with two more camps- so that’s 5+ weeks I need to figure out each summer- all I can do is try right?

and Camp Kudzu was amazing as per usual. I was glad to have an amazing group of campers and co-counselors. Our cabin was 100% Type 1- which has never happened to me before- the campers (of course), all three counselors (we were also all CIT’s), our CIT, and our clinician. (Our MCIT didn’t- but she’s been to camp forever). I still cry when we do the Diabetes lineup- over 983 years of Diabetes- I know we’ll be at 1000 soon. One volunteer will be at 50 years next year- we are all living and thriving with Diabetes.

My love for camp continues to grow- and honestly I like it better on the other side- even more than being a camper turned CIT turned counselor- I love watching children have AHA-moments, and grow through camp. I really want children to get what I got out of camp- a life changing experience, to not be the only one, to learn, to have an escape, and to have a family.

 

 

 

 

I’m really sorry this post is short. I really do have a lot to say- and I have a lot of feels about camp- but there’s a lot going on- classes are about to start- and I’m trying to get other things handled before schools starts. I’m also sorry for not editing it.

-Love, Words, Inspiration, and Insulin! -Until next time! and until there’s a cure!

I’m not nervous what?

again- I didn’t edit well- goal is to get better with that

I planned on writing the Camp post for today- but after my Dermatologist appointment and my lovely two hour phone call with my internet/tv company- I would like to rant a little while saying AHA.

Like I’ve said, I haven’t been feeling well for months now. I will go ahead and disclose it- I am pretty sure it has to do with my thyroid. I have the symptoms- and all but one number is not “in range.” But doctor after doctor won’t do anything. So I decided to switch to a new endocrinologist- who I will see tomorrow. After this whole debacle is solved and fixed- I will go into the whole story. Also, It doesn’t have to be my thyroid that is wrong, but something is- and I WANT IT FIXED.

This whole “in range nonsense” really gets me going. When I started trying to research, I see the same posts again and again about people barely being in range or just out of range, but the doctor doesn’t want to do anything. I do understand….. to a point. If the person is feeling okay, I understanding watching and not wanting to do anything right away. BUT if the person has been complaining about not feeling well or feeling off, and the numbers aren’t quite in range- really make them suffer- say it’s only stress or it will get worse. I do understand though…. to a point. Apparently they’ve been watching my numbers since October 2013…. I  would have liked to know that- I thought I was reacting to other medications, so I went off them- did I even need to go off them?  Who knows.

I have a good feeling about tomorrow. My dermatologist was on my side- along with my new GP (she didn’t feel comfortable writing a prescription because it wasn’t her specialty- but she is a back up plan). But regardless, I feel good about tomorrow.

Usually- I am obsessing over my Diabetes at this point and getting nervous- I get worried about getting “yelled at”- which I shouldn’t. But this time I am not. I am only concerned with my thyroid (or whatever is going on). I know I am going for Diabetes, but Diabetes is taking a backseat for that appt- sure we’ll make adjustments and such. BUT- things will change. The end.

 

I have had quite the relationship with my- this has been going on since titanic 2 happened in our apartment in January. Moral of the story- I don’t play. You do something wrong- and then admit it- and then don’t correct. I’ll make sure you do and record you saying it should be fixed and I am not responsible for various charges.

  • Please charge me 600 for your error.
  • Please say it is our fault, but we can’t do anything to fix it.
  • Please don’t process the paperwork to get my money back.
  • Please don’t process the paperwork for my extra credit.
  • If I take the time to call you and get hung up on, I will make sure I didn’t waste my time.

I take all the above, and more that happened, as a challenge.

That I feel as though I won. I don’t give up. I don’t just drop it because you make it hard.

I get employee names and numbers and keep asking for a supervisor. To reach someone who can do what you said you weren’t allowed to and you also stated no one would do that for me.

I got my money back. I got a credit because of all the time i spent. I stayed on the phone- and got stuff done while I waited.

You can’t treat people that way all the time. You’ll find people who won’t stand for it- like me.

 

In other news, I worked the last freshman orientation for the activities resource fair. So hopefully we will have many new members who are excited to be involved for Dawgs for Diabetes. I finished the newsletter last night with a lot of help. I’ve started on the College Tour and First Meeting plans. I’ve done some deep cleaning.

and oh yeah- CAMP KUDZU SESSION THREE IS SATURDAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I am so excited, but at the same time- I can’t believe summer is almost over- WHAT?

-Love, Words, Inspiration, and Insulin! -Until next time! and until there’s a cure!