Grayson Willson Interview – Type 1 Diabetes Advocate
I recently came across an online news article during my weekly roundup of news articles featuring diabetes topics. I like to find articles about people who are doing great things in their community and may not have a blog or twitter account with a huge following, so we can all try and help support them in their advocacy. Last week I saw this article from 10tv.com. I encourage you to read the short news story, but a brief summary for context of this interview below. Grayson was participating as a Patient Champion in the Nationwide Children’s Hospital in Columbus and wanted to help spread education and awareness of Type 1 Diabetes.
I think that this is awesome that she did this and I knew instantly that I had to interview her and introduce everybody to another awesome diabetes advocate! So, without further delay, the interview.
Please introduce yourself (name, twitter, blog [ if any], and area you are from.
My name is Grayson Willson and I’m from Dublin, Ohio
When were you diagnosed with diabetes?
I was diagnosed on January 8th, 2009 when I was 8th grade. I was 13 at the time
Could you please give a few details about the diagnosis?
After getting a severe case of strep throat on Thanksgiving of 2008, I became frequently thirsty and was always urinating- the classic symptoms but they were easily overlooked. In December alone I lost thirty pounds. On my return back to school after the winter break, I became nauseous and went home. When nothing further happened, my mother was about to return me to school when I began to uncontrollably vomit. We immediately went to my pediatrician who took a urine test and discovered I was a diabetic and my blood sugar was in the 700 range. She said, “Pack your bags; you’re going to the hospital. You’re a diabetic.” The initial shock was ignorant at first- none of my family had any history of diabetes and we had no clue what it meant. We never assumed it would change all of our lives forever.
Can you explain briefly to the readers what the marathon event was and how you came up with the idea of educating people about diabetes?
I was asked by Nationwide Children’s Hospital in Columbus to represent one of the miles in the Columbus Marathon- also known as a patient champion because that was the hospital where I was diagnosed and I currently volunteer there. As a patient champion I was given my own mile to theme and decorate and motivate the marathon runners. I had mile 10, and decorated it as a Candyland. I chose this theme because I felt it was important to show that Type One diabetes doesn’t have as many restrictions as many people believe. Also, every tenth of a mile we had signs with fun facts about type one to educate the runners since many people are only aware of type two. I jumped at this opportunity because I am all for the education about type one because of the lack of it. Type two is a huge issue today with obesity rates in America and I find myself constantly explaining type one and the differences between the two types. I’m sure any type one can agree that we get tired of being told we can’t eat something that we can or that people “hope we get better with some diet and exercise”. I feel that if we are going to hope for a cure, people need to know about our disease and our daily struggles. The more people know and are educated on it, the more change we see. Breast cancer and leukemia awareness foundations are great examples of this and I hope one day that type one foundations can be at their level.
In part of the online news article that I read initially, you mentioned your frustration with people not understanding the different forms of diabetes. What other ways have you attempted to educate people about type 1 diabetes? Have you had any roadblocks in attempting to spread education to people?
I do my best to educated people by getting involved. My family and I are very active in our local chapter of JDRF and we put together events that raise money for a cure and also teach people about type one. I’m willing to tell my story to anyone who is willing to listen, I actually love it. I will do anything I can to be the person to finally get Type One diabetes one the publicity it deserves. Type two in general would probably be the biggest roadblock I have. When I explain type one to people, generalities about type two are constantly interfering with that. I actually get really frustrated that their names are so similar, and would love to have that changed seeing as they are really quite different, but I’m not sure exactly how I would be the one to accomplish that… But it’s a wish ☺
You mentioned that three students in your school all have type 1 diabetes, please provide insight on the support that you all are able to provide each other.
We are often checking up on each other at school. We all have to go to the nurse when we eat at lunch, or when we’re having a low or high. When one of us gets a new utility or something, we show the others and it’s a neat way to learn about the different things out there and how they work. We make sure to have fun with it too- seeing who has the better glucose or who has the better snacks. I’m sure many people can relate to trying to make a game out of it- sometimes I’ll go in the nurse saying “I’m really high and I feel sick.” The nurse, of course, knows I’m talking about my blood sugar. But other students who don’t know who I am always display priceless faces. Diabetes doesn’t always have to be so bad.
Does this make your parents feel more comfortable and safe knowing that there are others at the school with type 1 diabetes?
Having other diabetics in the school are most definitely beneficial. I was the newest diabetic out of all of them and they helped me with new situations I dealt with like my transitions from shots to an insulin pump. With them being there, the district nurse has become very familiar with our disease and how we manage it. I’ve heard about diabetics being the only ones in their entire school district with little experience from any nurses or aids and I would suggest to them that they look on type one diabetic forums where they can ask other diabetics questions they may have. My dad found these extremely helpful when I was first diagnosed.
I particularly loved the idea of decorating with candy during the marathon to show that people with diabetes can have sugar. Did you receive a lot of questions about this and questions about why you chose this theme?
Surprisingly, a lot of people understood. I would just say, “My theme is Candyland to prove myths about diabetes wrong” and they would get it. I’ve been asked more questions about what I can and can’t eat outside of the marathon especially when someone witnesses me bolusing (this was just autocorrected to blousing. Even Microsoft Word doesn’t understand hahah!) for the first time. Easily I can put together a list of FAQs I’ve come across in the past almost four years- “Does that hurt?” “What’s that in your pocket?” “So that’s like, in you??” “Do you sleep with it?” “Wait, so can you eat that?” “Is that bad?” I can go on, but I bet you completely understand.
What words of advice would you like to give to those who would like to “do something” in their community to support diabetes, but don’t know how or what to do?
I would say get involved with JDRF. The American Diabetes Foundation is great also, but it encompasses both type one and two. I want to turn my focus to type one and, of course, educating people on it. Throw together a easy fundraiser- it can be anything from a bake sale to a night of ice skating to bingo. We always say think of something you love and give it meaning. I love art, and made an art piece for the hospital to use as an auction item for their fundraising. It really doesn’t need to be as complicated as people think. If that’s not someone’s style, just teach a few people about type one. Friends, family, classmates- every person counts.
Any other last words of wisdom or encouragement to the readers?
I was diagnosed when I was 13, a really odd age for type one. At first it was rough because I had lead a normal life and it was much harder adjusting to a new one as a teenager than it would’ve been as a child. But what got me through it was that I decided that I wasn’t going to let this disease beat me- that I got it for a reason. Turn your weakness into a strength. Being diabetic makes me unique; it makes me who I am. I would suggest that all diabetics be proud of who they are because we are strong people who got dealt a rough hand. You just have to learn how to play your cards right.
** On an additional side note. Grayson’s father has mentioned that he will attend a #dsma chat, so please be sure to welcome him like all other newbie #DSMA attendees.
Throwback Thursday – Michael Hoskins Guest Post
Back in June of 2010 I featured a guest post from Mike Hoskins. Check out the link below to take a look back into the past from what Mike had to say about speaking up about your diabetes.
Life of a Sugar Patient
That title sounds a little weird doesn’t it? No, I am not changing the name of my blog to that. That phrase is a term that brought two visits, yes, not just one, but two visits to my blog last month. WTF does that even mean?
I’ve decided to try and get a little creative about this sugar patient thing and also have a little giveaway. Leave a comment below with what your definition of a “sugar patient” is and a randomly selected commenter will receive a brand new Glooko cable.
Is a sugar patient somebody with diabetes? Somebody who is allergic to sugar? Somebody who doesn’t eat enough sugar? Somebody who is made up of sugar?
Good luck and happy creativeness
She Said Yes
This post is not really about diabetes, so it’s going to be pretty short. But for those that have been reading this blog for the 5 years that I’ve had it, you know that I’ve been dating Amanda for almost 7 years. Well, even though I’ve known for a long time that I wanted to marry her, this was the time that I decided to propose to her.
And she said yes. Just one more thing to add to my life right now, planning a wedding!
Juicebox to the Rescue
Last week I started using Apidra again, at least for a little while. I sort of have a mix and match bag of insulin right now. A little Apidra, a bit of Novolog and some Humalog sprinkled here and there. I am not switching back and forth, but once I’m out of Apidra, I will move to Novolog until that is gone and so on and so forth. Thanks to an angel of insulin, I have some extra insulin for about a 1-2 month supply. Let’s get back on topic.
Since, I was using Apidra again, my bg was going low in the morning time because I needed to adjust my basals again. As I have written about before, I use less insulin, smaller basal rates, when I am using Apidra, which is why I want to use it. I went through a whole bag of the super-sized Skittles within 3 days because of the lows that I was getting. Now, if you haven’t eaten about 4 handfulls of Skittles in a while, then you may not know, but your jaw completely locks up and it’s nearly impossible to continue to chew. I knew that I needed a different form of sugar, so I decided that I would go buy some more orange juice. The problem with the orange juice though is that I drink it even when my bg isn’t low because I just love orange juice. Read More
Throwback Thursday – Lorraine Sisto Guest Posting
I have decided that there are a lot of older blog posts that either I have written or others have provided as guest posts for this blog and that they should be re-posted. I have had several guest posters in the past, but Lorraine Sisto has been the first to do it twice! She recently wrote a guest post during Diabetes Parenting Week about the summer to school transition for Caleb.
Here is a link to the guest post that Lorraine also wrote in June 2012 about the Power of Perspective.
Hope you enjoy if you missed this post two years ago.
Thanks a lot Local and State Government….NOT!
After writing a few blog posts about my thankfulness and appreciation of the DOC, I now want to write a post about the local and state government. This, unfortunately, is not a thankful post. After losing my COBRA insurance almost two weeks ago now, I reached out and sent e-mails to every single local and state elected officials, every advisory board, panel, and organization I could think of. With it being re-election time, I knew that their plates would all be filled and they would not have much time for a voter because they are focused on the masses at this time looking for a re-election.
On the other hand, I thought that I would at least get some sort of responses that explained that, because I could understand that and be fine with that response. However, the responses (the few that I did receive) were not that great.
When it came to the different agencies or groups that I contacted, none of them seem to be the right place to contact. About 5-6 different e-mail responses said, “that’s not something we handle, contact this department.” So, I would contact “that” department, and they would say the same thing. Eventually, I was sent to 5 different groups until it came full cycle and I began getting referred to groups that I already contacted. Either, there is no sort of group out there that can help somebody who just lost COBRA, or nobody wanted to get their hands dirty. I’m going to go out on a limb here and say, everybody likes clean hands during re-election season.
So, it’s back to working with Big Red and Big Blue (ADA and JDRF) about resources or advocacy plans on making sure there is some sort of group or organization that can help fight this.
The adventure continues….
No COBRA Follow Up – Supply Inventory
It has been a very long week for me. There has been a lot of adjustments, a lot of planning and figuring out what I am going to do for all of my supplies and insulin, etc. Like I said in yesterday’s post, I just wanted to say thank you again. Honestly, I have never been in this position before and it means so much that you all would be so kind and considerate to reach out and help in times of need. It still feels weird asking for supplies when over my almost 10 years with diabetes, I have been the one who has sent supplies out to others. What comes around, goes around right?
I spent a lot of time last week figuring out what my inventory of supplies currently is and how long that current supply will last me before I have to start purchasing items out of pocket. It breaks down like this:
– OneTouch Strips – 400 strips
– MMT397 Infusion Sets – 9
– Reservoirs – a lot (stocked up on these throughout my insurance life)
– Dexcom sensors – 2 (found one in my home office where it wasn’t supposed to be)
– Things to put over my Dexcom sensor in bath or pool (I use a bunch of different items) – 2
– Insulin – I had only 1-2 weeks left, but the insulin fairy hit me and I now have a 3-4 month supply of inuslin. Greatest act of kindness I have ever seen!
So, my two biggest areas of concerns in my eyes are the test strips and the infusion sets. I think that I will be fine with the infusion set side of things because there are some very cool and awesome people out there who are willing to help out.
That leaves me with the test strips side of things. I have a decision to make, do I go with a cheaper strip, like a Walmart brand or such and deal with inaccuracies, or do I continue with one of the most expensive brands of strips and just suck it up and pay out of pocket for them? I am unfortunate to still have a job while living without insurance. I still am making a living, in fact, since I own my own business, I can have more control over how much income I do make and if I have to take on a few more lower paying tasks throughout the month to cover these additional costs, then so be it.
I’m sure that I could easily get more and more strips from my endo’s office, but I don’t want to do that. I’ve seen the community that my endo services and there are people out there far worse off than me financially and could use the strips a lot more than I can.
But, this is where I am looking to hear back from y’all. If you were in my situation, would you go with the higher cost, more accurate, or move on to the cheaper choice and deal with the inaccuracies from the cheaper meter and strips?
Your opinions and suggestions are welcomed.
Thank you once again.
Thank You All for your Support
So, as many of you know, last week I received the horrible news that I lost my COBRA insurance coverage. I was denied twice after submitting a review of the decision. With that being said, I just wanted to take the time to say thank you.
Thank you to every single person that reached out to me to provide advice, supplies, support, and just a comment of concern. It truly means a lot to me that so many people care about what happened to me and what I am going through. You really notice how close this community is when something happens and people are in need of help.
So, thank you. I really can’t say it enough. Thank you, thank you, thank you, thank you.
I will be posting an update on the situation tomorrow. Basically, I’ve reached out to politicians, attorneys, organizations, etc. and I will let you know what came out of all of that.
But, once again, thank you all so much.
photo credit: Avard Woolaver via photopin cc