27 Years and Counting

Today I have officially lived with Type 1 Diabetes for 27 years. And counting 🙂

Man, that sounds like a long time. And tonight I realized that diabetes has played a role in every single major milestone I have reached in my adult life. But the catch is I didn’t let it STOP me from doing any of those things. It just got to go along for the ride. And every day, 24/7 it’s a goal to not let it take the drivers seat, even though it occasionally wins I always regain control of the wheel.

Back to my milestones ….

Since I was diagnosed as a 17 year old senior in high school I have accomplished so many things.

I graduated high school.

I graduated college.

I have met friends I never would have met if it weren’t for my Diabetes.

I got married. ❤️

I have traveled across the world multiple times.

I delivered a healthy baby boy.

I ran a 5k with my son.

I have been involved with JDRF for 26 years in many different capacities.

I delivered 2 more healthy baby boys. At once. 😉

I ran a 10k.

I competed in CG Games.

I have traveled to so many places in the country with my husband, my family, and with my best friend.

I’ve advocated on Capitol Hill for Diabetes.

And so much more.

I’m proud of all I’ve accomplished these last 27 years and I can’t wait to see what the next 27+ years will bring!!

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Choices

When I was diagnosed with Type 1 Diabetes in 1992, I was given a One Touch meter in the hospital and I used it for many years. But around 10-12 years ago my Endo’s office had given me a Freestyle Lite meter and it had become my favorite for all these years.

Until March of this year when I had to switch due to my insurance only covering 3 types of One Touch meters. No other brand is covered by my insurance. And then when I went online to order one, the one I’d picked was out of stock so I then only had 2 to choose from. *sigh*

Most people think a meter is a meter, right? Yes. But not really. In the first few days I compared results from both the Freestyle and the One Touch. The One Touch consistently ran 20-30 points higher. That could be a big difference when I take a correction bolus based on that number. But even that I could live with. Because I can feel when I’m too high/low most times.

But one of the biggest differences that I’m struggling with is the fact that with my Freestyle if I put a drop of blood on the strip and it wasn’t quite enough I had a couple of seconds to add more before the result posted on the screen. Not so much with the One Touch. When I put a drop on the strip, and I only get one shot (#pardonthepun). If I don’t put enough then I get an error and I have to use (waste) a test strips. Those don’t grow on trees, and I am limited on the quantity I’m given each month, so it’s a little frustrating.

Frustrating because I don’t get a chance to add to the sample – after 27 years of pricking my finger 6-8x a day (if you do the math then that number would be over 68,000 times since my diagnosis. So I clearly have some callouses on my finger tips and sometimes it doesn’t gush out a big enough drop of blood.

But also because I have only one meter that I can use. It goes back to the root issue for me of not being able to use the tools I should be able to use in order to manage my diabetes the way I need to be able to manage it. Can I check my blood sugar daily with what I have? Yes. And for that I am thankful. But it’s not the way I would choose to do it, if I were given the choice.

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Advocacy on the Hill

All of the DPAC Champions before going to the Hill

Later this month I will have lived with Type 1 Diabetes for 27 years…  And I’ve always said that if I was destined to have an incurable disease, at least it’s one that I can control (for the most part) and I’ve also always said that I want to do something positive with this disease – raise awareness, share my story, help newly diagnosed patients – SOMEthing.  And I’ve been fortunate to have been able to do all of those things on multiple occasions. But this past week I took it to a new level and am still SO fired up about it!

I was invited to attend a policy training event in Washington, DC, hosted by Diabetes Patient Advocacy Coalition (“DPAC”) that was held last week.  It was a mixture of people who lived with Type 1 or Type 2 Diabetes, parents of Type 1 children (young and grown), Dietitians who wanted to learn how to better help their patients, and heck there were some people who had no direct connection to diabetes but just wanted to help!   I went into the weekend with no real expectations because I truly had no idea what to expect.  But I can’t say enough that it by far exceeded any assumptions or expectations I may have thought would happen.

We spent the first day and a half in training.  Everything from learning how to speak with representatives on Capitol Hill, to learning the Bills that we were there to ask them to support.  But one of the biggest lessons was how to share our story.  We all have one.  No matter which category we fall into – living with diabetes or caring for someone who lives with it, etc.    The issue initially for me, personally, was how do I summarize 27 years of living with Type 1 diabetes?  We were encouraged to have a 30-60 second story that you are prepared to share at any point – whether it’s with the Representatives themselves, or with someone in the hotel elevator that asks why we’re in town.  By nature, I tend to overthink everything.  Do I talk about how when I was diagnosed at age 17 that I was told by the admitting physician that I should never have children, yet here I am with 3 healthy boys?  Or do I talk about the time I passed out with a low blood sugar from moving one weekend?  Or about the time when I was in my 3rd trimester with the twins that I received a letter from my insurance company telling me I had to switch from Humalog to Novolog because it was more “cost effective”?  Ugh.  Don’t get me started on that one …. (by the way, I also learned during this training that there is a term for that and it’s called “Medical Switching”.)

I decided I wouldn’t go with a set “script”, per se.  I have plenty of stories in my wheelhouse, but I decided that I would go where my gut said I should go depending on who the person on the other end of the conversation ended up being.  In the end, it gravitated toward just how freaking expensive it is to live with diabetes.   And how wrong it is that we spend SO much out of pocket yet many of us still can’t get all of the necessary supplies needed to take the best care of ourselves that we can.  And how I have had to make employment decisions based on the availability and cost of insurance coverage, and how in the past I have had to give up my dream of being a stay at home mom because I have to provide insurance for myself and my family while my husband is currently unemployed.  His dream is to be self-employed, which I am 100% supportive of, but that means that I will likely need to continue working to provide insurance.

So in the training we mainly focused on two bills that we would be discussing with the Representatives (and/or their Staff Members):

2103: Affordable Insulin Approvals Now Act. This is a bipartisan bill that would aid in speeding up approvals of lower-cost generic, and “follow-on” insulin products in order to help lower costs of the life-saving drug. Insulin has experienced a price increase of more than 600% (yes, you read that right – SIX HUNDRED PERCENT) over the last two decades in the U.S.  Today’s legislation would lower the price of insulin by promoting competition and bringing lower-cost generic products to market sooner – specifically by requiring FDA to continue reviewing generic insulin applications even after the agency’s currently planned March 2020 cut-off date.

H.R. 1840 and S. 814 Expanding Access to Diabetes Self-Management Training Act of 2019. This bill will reduce barriers and improve Medicare beneficiary access to Diabetes Self-Management Training (“DSMT”) in some of the following ways:

  • Allows the initial 10 hours of DSMT during the first year to remain available until fully utilized.
  • Allows 6 hours of DSMT in subsequent years, up from 2 hours
  • Removes the restriction related to coverage of DSMT and Medical Nutrition Therapy services furnished on the same day (currently Medicare patients have to pay two co-pays to go to their provider once for the DSMT and again for nutrition – when we all know that diabetes and nutrition go hand in hand, so they need to be done at the same time. There is also issues with transportation, so many Medicare patients would not be able to go to two different appointments, much less be able to afford two back to back co-pays.)
  • Removes the co-pay and deductible requirements for these appointments.

We also asked the Representatives and/or their Staff Members if they would consider joining the Diabetes Caucus, which is the largest Caucus currently in Congress.

I think we can all agree that insulin affordability is a huge problem – and if you don’t know what I’m talking about, Google it … it’s a thing and it’s out of control.  And training is key – there are people that once diagnosed, they do not have the resources available to know how to manage their disease.  If properly managed, it is completely possible for someone to live a long and normal and healthy life.  But if left untreated, and unmanaged, there are almost certain catastrophic results.

I am incredibly proud and blessed to have been invited to attend this training and to have the opportunity to have spoken with the many staff members and my own Congressman during these few days.  Every single staff member we met with shared a personal connection he/she had with diabetes (parents, college roommate, another family member, etc.)  And that is encouraging (that they “get it”) but also discouraging because it reinforces just how many of us are affected by it – either directly or indirectly.

The best conversion for me personally, was with my home district’s Congressman, Van Taylor.  Honestly, I went into the meeting without a lot of knowledge about him, or what he stands for, but left with a huge amount of respect for him. (This is not an endorsement, just sharing my own personal opinions).  We sat down with the Congressman and shared our stories. He focused on me, as I was the only one in the room who was one of his Constituents and at one point he said that it was one thing to hear these facts and read about the insulin crisis on the House floor, but he said, “It is really difficult to look in your faces and see the emotion and it makes this more real.”   My eyes started to well up because that was the moment I realized we CAN make a difference. And we DO have a voice.  It may not seem like it but it can easily have a snowball effect.  Just have to speak up. And share our story.   It DOES make an impact.

 

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Run, Shannon, Run!

Earlier this year I decided I was going to try to start running. I didn’t set any real expectations for myself (because I assumed I would surely fail). So I decided to just get out and start running as often as I could and see what happens.

Well that was in February and here it is October 1st and I now consistently run 2-4 miles, 5-6 days a week. Every week. It’s become a habit that I never thought I’d have but here I am! I wake up in the morning already planning out if I’ll be able to get on the treadmill in my office building or run in my neighborhood in the evening. (Currently walking on the treadmill as I type this, which takes coordination, btw) 😉

I decided the attitude of just get out there and see what happens wasn’t good enough anymore. So I started setting actual goals. Sometimes it was a timed goal, other times it was a distance. Sometimes it was as simple as “run till you get to that mailbox” lol

One of the bigger goals I set was that I want to run a 1/2 marathon (wait, who AM I??) Let me rephrase that. I WILL run a 1/2 marathon in the next year. But I knew I couldn’t (shouldn’t) just jump into a 13 mile run. So I signed up for a 10k (which is a little less than 7 miles).

And y’all… I finished that 10k last weekend and killed it. I mean I wasn’t anywhere near the front of the pack or anything but I finished! In the time limit I’d set for myself. AND I didn’t die. It actually wasn’t anywhere near as hard as I’d expected it to be. When I told my husband that, he reminded me that I’d been running, and preparing/training, for MONTHS. Oh, yea 😉

A 10k might not seem like a big deal to some but to me it was a huge deal. I proved to myself I CAN do the things. I CAN run. Dare I say, I AM a runner now even!

I’m sure it won’t always be this easy, but diabetes even played nicely that day. I was intentional about my food and water intake the day/night before. And ate appropriate snacks the morning of. And I packed plenty of glucose and had my tester. (I even wore two waist pouches because it wouldn’t all fit into one lol) And I took advantage of the water stations that also handed out Gatorade shots. And my Bg stayed in the 140-150 range pretty much the whole time. Shannon-1, Diabetes-0. We all know the odds aren’t always in our favor so I’ll take the wins where I can get them. 🙂

We should all get out there and set the goals, then crush the goals. And to always remind ourself that tomorrow is a new day so if we don’t meet the goal today, don’t beat ourself up and try again tomorrow! #letsdothis

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Still on a break …

Wow it’s been a whole year since my last post. Life gets busy I guess! I am still on a pump and CGM break … Let me see if I can catch up on everything else …

Earlier this year I started a new job – it was a necessary move because my last job was very toxic and it was affecting my health. But that meant new insurance. Which like I’ve always said, I am so very thankful to have insurance. I know a lot of people aren’t as fortunate.

But at the same time I am incredibly frustrated because I was in DC last week visiting with Representatives on Capitol Hill regarding hot topics in the diabetes community (more will come on this soon). One of the activities we did was put pen to paper and add up what our out of pocket cost is to live with diabetes. I mean I’ve always know it’s an expensive disease but I’d not done the math in a very long time. And I had some serious sticker shock when I saw it in writing.

I pay almost $1,000 a month for my insurance through my employer for family coverage. And since my policy became effective March 1st I have paid over $2,000 just for MY prescriptions. And the kicker is not a dime of that goes toward my medical deductible. It goes toward my out of pocket for the year. But the problem is my pump and CGM both go toward Durable Medical Equipment (DME) which means I’d have to pay 100% of the cost until I reach my deductible (which I’ve not paid a dime toward this year). It’s a vicious cycle ….

I called #Medronic and #Dexcom this week to see what my cash pay options would be and it’s just not feasible right now. My husband is currently unemployed so we are having to make decisions on “must have’s” vs “would be nice to have’s” and insulin trumps pump/CGM right now. And my pump is apparently not eligible for upgrade until next March so I’ll likely stay with what I have until at least then. And at that point I’ll consider changing to their closed loop system – I have several friends who have tried it and love it!

I have also started running this year and my insulin needs have changed drastically. For those that don’t know, when I’m on MDI (daily insulin injections) I take one shot in the morning and that’s what my body gets for 24 hours as my basal rate. (And then I take 3-5 shots of Humalog a day to cover meals/snacks or correct highs) When I’m on a pump I can adjust my basal rate throughout the day as needed. I am currently waking up low almost every day either in the middle of the night or in the morning, even when I eat a snack before bed. That could be avoided with the ability to change/lower my overnight basal rate.

Not looking for sympathy, but using my blog to vent my frustrations about not being able to manage my diabetes in the best way possible. Again I know it could be so much worse and I’m SO very thankful that I have insurance and that my insulin is currently affordable. I know I’ll be back on my pump and CGM soon- just gotta keep doing my very best to take care of myself until then. 🙂 #ivegotthis #lifewithdiabetes

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Taking a Pump Break

When I was pregnant with my first son in 2007, my Endo at the time put me on a Medtronic pump and I’ve been on it ever since. Until this weekend.

I’d made the decision to take a break for many reasons. If I’m being honest, the main reason is money- I am thankful to have insurance, but my current plan does not pay much at ALL toward my diabetes supplies. Luckily my insulin copay is good but not the supplies.

But I digress.

My Endo put me on Triseba for my long lasting insulin, and I am continuing with Humalog for my bolusing. I was on Lantus the last time I was on MDI and at the time it didn’t last the full 24 hours so I had to take it in two doses. He has said Triseba will be better but we shall see. #fingerscrossed

Here are my first few observations after being back on MDI for almost 48 hours.

First, I have apparently forgotten how to do math. I never realized how much I relied on my pump to do all the thinking for me but good grief I feel like a newly dx’d kid again that can’t figure out how to add up how much insulin I need to take. Granted there is SO much math involved- not only do I figure out my carb ratio (how many units of insulin I need per gram of carb) but then I have to figure out what my correction should be if my blood sugar is higher than my “target range”. My husband has been a God send this weekend because he’s a walking human calculator. But I am sure tomorrow when I’m back at work and in the real world, I’ll be using my calculator until this starts to make sense again. #dontjudge

I had been having some painful pump sites lately so it’s been kind of nice not having to worry about where my pump is so I can make sure my kids don’t bump into it.

I also am having a hard time getting used to not having my pump attached to me 24/7. I’ve always found it a little inconvenient but I didn’t realize how “attached” I was, pardon the pun. Little things like when I go to the bathroom I no longer have to think in the back of my mind “where is my pump site so I don’t pull it out?” Or at night when I sleep I am strategic about where to clip my pump. Or when I get in the shower I no longer have to hurry up so I can reconnect myself to my pump so I can avoid a rising blood sugar.

But that first time I gave my injection yesterday….in my head I was my 17 year old newly diagnosed self. And my husband and one of my sons were standing there and I had to leave the room. Because I had to cry. Not because it hurt (I mean it did a little) but it’s because I had to mentally prepare myself to inject that plunger of life support into my leg. Once I did it I was fine but it took some coaxing for my brain to tell my hand to actually do it.

Diabetes can be a very emotional disease. Even after almost 26 years of living with this, it is always there. And these last 48 hours it has been in the forefront of my mind more than usual but at the same time I’ve been reminded how much it was there even when I didn’t realize it.

I am wearing my Dexcom so I’m logging my blood sugars and injections and food … so I’ll update in a few days after the Tresiba has had a chance to kick in and hopefully start working it’s magic. Stay tuned!

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Rambling Thoughts from Recent Endo Appt

I have a few thoughts on my Endo appointment yesterday that I wanted to “talk through”.

I knew going into this appointment that it was not one that would show an improvement since my last appointment in September (I was supposed to go in December but had to go out of town unexpectedly with work, so I was rescheduled to January.) I traveled quite a bit over those last few months- a family trip to Disney World, and many work trips. I have no excuses, and I own the poor choices I made. But all in all, I was not expecting good results. Although, the numbers weren’t “as” bad as I had anticipated. My A1C was up .2 points, and my weight was up 4 lbs, but again, wasn’t AS bad as I’d expected. #perspective. But I do know that I have a lot of room for improvement, and I’m the only one that can do that. I met a new T1 friend recently and she put it in a perfect analogy – it’s like going in to take a test that you know you aren’t going to do well on, but you always leave the test feeling pumped telling yourself you’ll do better next time. That’s exactly how it feels!

But back to the appointment itself ….

I brought my Dexcom reports with me and the word that he used was “erratic”. He’s not wrong. My reports did show a few patterns, though, and we talked about that. One is I am consistently high after dinner. I thought maybe I needed to adjust my bolus formula for dinner. He said not yet -suggested the following: taking my insulin sooner than I currently do (I usually take it as I sit down to eat); or he said he has some patients who eat little to no carbs at dinner and see great results; or he also has patients who don’t eat until their BG is 100 or less (this one is not practical since I’m feeding my family and I can’t very well feed them and sit to wait for a magical BG number before I eat.); or he said I could take a brisk walk after dinner (again, not always practical.) So I’ll start with trying to take my insulin sooner, and eating less carbs. But I am consistently correcting a high bg before dinner, and then my overnight basal is perfect right now, so I wake up with a perfect number almost every morning.

He said there is a newer, more fast absorbing, insulin coming out next month that I may want to try. I asked if it was approved for pump users and he said not yet, so I’ll have to think about that one. I will try these other options first before changing from Humalog, which works well for me.

The other thing we talked about is why is it is so dang difficult for diabetics to lose weight. I can lose inches when I’m consistently working out but I rarely ever see the number on the scale go down. He said his only answer was “insulin”. *sigh* It’s possible, but very difficult.

I also asked him his thoughts on the Libre. He said he’s written 60 scripts for it in the last week. And that it works great so far – but he would not recommend it for someone already on the Dexcom because you lose so many of the bells and whistles (literally) with the Libre.

He also did another ultrasound on my thyroid – I have a large nodule (approx. 2 cm in diameter) that I’ve had for years – had a biopsy on it in 2011 and it still looks about the same. I do appreciate that he keeps a close eye on it, though.

On the way out of the office, I mentioned to the nurse that I’d lost 300 units of Humalog (I will post separately about that mishap) and she said “Oh I can give you a sample bottle of Apidra, it works the same as Humalog.” *sigh*

Thoughts on that one, anyone? I’m thinking it does not work the same but have no experience with Apidra.

Do any of you have any thoughts/feedback/comments on any of the above mentioned rambling thoughts? Thanks in advance!

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