Author: <span class="vcard">Sara</span>

Wordless Wednesday: Top of the hill

JDRF Ride to Cure picture

The picture is entertaining enough without additional context but here is one for each mile.

  1. This was the first time I had been on my bike since the big ride – other than one short ride that was two days after the event.
  2. It turns out you are not supposed to take off the entire winter from riding.
  3. I have a trainer to ride indoors, I just never exactly felt like using it.
  4. This was the same ride route that officially started my training last year too.
  5. While we were riding someone asked us if we were in a race.
  6. I thought they were asking because of our somewhat matching jerseys.
  7. It turns out they were asking because my number from November is still on my helmet and bike.
  8. I am not the only one.
  9. Last year I didn’t make it to this spot – had my head between my knees about a mile earlier.
  10. I thought about stopping in that same spot this year, but I kept going.
  11. I guess I’m not all the way back to zero.
  12. However, I was more than happy to stop at this point and pose for some selfies and group shots at my favorite sign.
  13. I actually have gone down this hill a few times (and it is fast!) but it’s actually the uphill that is the real trouble spot.
  14. What I like most about this spot is that from here all the way home is entirely downhill.
  15. While a few of us are enjoying our photo session in the foreground of the picture, three of my teammates are actually attempting to conquer the hill in the background.

    .9. If this picture is not characteristic of my riding style and ability, I don’t know what is.

If you’d like to support my “wow – they myst really mean it when they say anyone can do this” ride fundraising effort, you can do that here. I’d ask you to help me ride some of the miles too, but I can’t quite figure out the logistics for that part.

JDRF Ride to Cure - Mile 0

Good doctor, bad doctor

Just when I have something to say, I accidentally change a setting that deletes the whole blog. Very happy that tech support was able to get it back!

A little while ago, I scheduled two doctor’s appointments back to back to take care of some nagging (not really diabetes related) issues. I really enjoy my endocrinologist’s office, so I forgot how bad and awkward other doctor/patient relationships can be.

Although I arrived on time and with my new patient paperwork completed, the first appointment started thirty minutes behind schedule. The doctor walks into the room and says, “Who referred you?” I tell him that I didn’t need a referral but my endocrinologist suggested he would be good to see.

“Oh, Dr. Endo? We share an extracurricular interest.”

I actually know about some of his extracurricular interests, so I asked him if those were the activities he was referring to. He says no, he is conducting diabetes research in his spare time. Should I mention at this point that I was at the allergist?

lists
Original source – http://bit.ly/2nkyTR3

From that point on, diabetes dominated the appointment more than the actual issue that brought me there. He expressed frustration that his work is not being funded. He was excited however that he had finished his research on mice and was moving to studying his treatment in dogs in just a few days. I think he finally realized I was not his target audience when he horribly misstated the percentage of JDRF funded research that involves type 1 diabetes (rather than type 2) and I told him he was wrong. He asked me if I had read a document that a specific organization puts out each year, and I told him he needed to do more research on that organization and their interests.

I am not sure if the awkward ending to our conversation was the reason why I was left in the room at the end of my appointment. His medical assistant thought the doctor was coming back and he thought the assistant was finishing the appointment. I finally had to let them know that I was still waiting in the room. When I return for my follow up appointment tomorrow (for a medication that isn’t working anyway), I wonder if he will remember me.

After being stranded in the room, I had to race across town to get to the second appointment in time. I made it with moments to spare, and waited in the waiting room for the next 90 minutes for my turn.

I had already consulted Dr. Facebook and Dr. Google, but it was time for me to consult an actual specialist for some pain I have in my non-dominate hand. After a quick exam, he determined it was the same issue that Dr. Google suggested.

Because I had an idea what the issue was, I also had an idea what treatment options were available. He explained that the most frequent treatments were either a series of steroid shots or surgery. When I asked him for his recommendation, he said he hesitated to prescribe steroids for someone with T1D. Especially since, as he shared, the shots are a treatment and the surgery would fix the issue.

I asked the doctor if it was weird that we decided on surgery so quickly in the appointment. We probably spent as much time talking about how quickly we agreed on surgery as we did agreeing on the surgery. The doctor had me do the pre-op procedures (paperwork, pregnancy test, blood work) while I was still in the room and told me his scheduler would call me to set up the outpatient procedure.

Considering the speed of that appointment, I was shocked when the scheduler finally called me a few days later. She actually left a voicemail at first, and when I called her back she said she couldn’t talk to me unless I was returning her call. I had anticipated having surgery within a week or two after the appointment, but the next available surgery date was eight weeks away.

I sincerely hope that when the doctor and I discussed the treatment plan, he had no idea how far out they were booking the actual procedures. I try to have a list of questions for every appointment, but I never thought to ask about the pre-surgery timeline. We talked about how long it will take my hand to heal, but we forgot to discuss how long it will still take until that treatment starts. It’s frustrating to lose half a day of work to two doctor’s appointments and feel like I am no better off than when I started.

About that ride

A year ago (on my thirteenth diaversary), I signed up for my first JDRF Ride to Cure Diabetes. It seemed like a fun challenge to take on for the year.

It’s easy to find a reason not to exercise, but still I certainly did not anticipate the difficulties of starting from scratch and training for a long distance ride with a (more than) full time job and the tough summer temperatures in the desert. Meanwhile I found a course from my mom’s place in California that ended right at the beach.

bike trail to the beach

I knew when I got to ride weekend in November that I couldn’t finish the full 106-mile course. I had completed some rides around 50 miles, so I figured the 76 mile route might be in my range. The day before the ride, all the JDRF riders had an information meeting with coaches and support team. We had been watching the weather, and it was going to be very windy the next morning, and so we were told that it was going to require about 20% more effort to defeat the wind. I wasn’t confident in my ability to ride 76 miles, so I knew I wouldn’t be able to ride the equivalent of the full course. I switched my ride distance (and where my bike would be dropped off in the morning) to 55 miles.

JDRF Nevada Chapter Ride TeamA few hours later we had a safety meeting with the Tour de Tucson crew. During that meeting, the official was talking through the course mile-by-mile and hill-by-hill. It seemed like every turn on the course was followed by a downhill. I can ride downhill all day long, and I didn’t want to finish the day feeling like I could have done more, so I started to have second third? thoughts about my distance. The rest of my local team was planning to ride the 76 miles. We made a deal that I would ride that distance too as long as we all rode it together.

Famous last words.

I’m not a very fast rider and I didn’t train much on hills (because they hurt, and who needs that?) so the rest of the team quickly got ahead of me. I told them not to worry and that I’d catch them at the rest stop. It was only a few miles down the road when I “caught” them out of the corner of my eye as I passed them on the side of the road. I knew that they could catch me so I yelled to them I’d still meet them at the next rest stop. It turns out that one of our riders had a blown sidewall and our teen rider had broken his derailleur. That part was particularly sad because it isn’t fixable during a race. I tried to give him my bike, but we couldn’t make it work.

Because of all the trouble including a bunch of flat tires (and my slow but steady pace), the team hardly ended up riding together. The bright side was that I got to meet a lot of other JDRF riders from other chapters across the country. I got to talk to one as we both gave up on a particularly hard hill and got off our bikes to walk. When I found out later one of the coaches from another chapter walked up that hill too, I didn’t feel as bad. Pushing our bikes through the sand of the dry lake bed was another great place to meet people.

Tour de Tucson lake bed

I reached the last JDRF rest stop at 68 miles. By that point we had picked up all the different ride lengths – the ride had different starting points so we could all have the same finish line. I was really, really (really!) struggling at that point. One problem with being gluten free on long distance rides is that it limits the choices of fuels at the rest stops. I can still live a long time without having another cup full of trail mix.

Team Schnak at Tour de TucsonAlthough Team Schnak focuses mostly on type 1 diabetes in kids, Mr. Schnak himself was the only reason I made it from that rest stop to the finish line. He rode right next to me for those final miles, keeping me entertained and distracted. My favorite moment riding with Kent was about a mile from the finish line when he asked me if I wanted to stop for a second to get put back together for the finish line photos.

Oh, the finish line.

I should mention that my mom had joined me in Tucson and had volunteered all day while keeping an eye on her phone to track my progress. In fact, we had only enabled “Find Your Friend” the night before just so she would know when I was getting close to the finish line.

So I am within about twenty yards of the finish line and I spot my mom, but she is looking down at her phone – apparently trying to figure out where I was.

Mom!

Mom!

Mom!

MMMMOOOOOMMMMM!!!

Rumor is that there were some not so nice words said as she finally heard me just as I passed her.

JDRF Ride to Cure Diabetes cheerleader

It wasn’t all her fault though. I had been to the same ride the year before, so as we got closer to the finish line, I had a good sense of where we were. That’s why it was so heartbreaking when the route sent us back out again (check out the route by the “T” of Tucson). The friends and family at the finish line were confused because we kept getting closer and further away again. The second problem was that our team had told our loved ones we were all riding together, but their phones were not matching. Every time they looked we were in different spots and different distances away.

So I rode 76.6 miles the week before Thanksgiving.

Check out the ride elevation compared to my BG elevation during the ride. Snapped the picture the night after the ride while dealing with a delayed low BG.

I’m a little ashamed to admit I’ve only been on my bike one time since then. My bike “lives” inside my apartment with me so it’s never far from my mind. The problem is that I just haven’t quite had the desire to get back on yet. I also had back to back medical appointments yesterday to check into some non-diabetes issues that are making it extra challenging to ride.

I need to get back on the bike soon because the Nevada team is riding again. We’re headed for Colorado, so it’s time to conquer some hills.

Is this normal?

I had my first endocrinology appointment after my Tresiba switch a few weeks ago. That was the true test of the switch to MDI compared to my insulin pump management.

The good news is that my A1c came back at the exact same number as my blood draw from last October (a number within the professional guidelines that I decline to specifically list). The bad news is that the end of my appointment was a little discombobulated and I forgot to ask one of my questions.

I’d say about one quarter of my insulin injections ends up looking like a hive or welt.

This is different than the occasionally bruise under the skin – it’s a definite raised patch on top of the skin. They don’t itch (but they sometimes burn until they disappear). At this point they eventually go away on their own. I typically have three or four hanging around at the same time in the process of healing or fading or doing whatever they need to do to go away since it takes about a day or two.

I can’t figure out if it is a reaction to the pens, the insulin, or something else. It happens with both my basal and bolus insulin, so that has not helped with the troubleshooting. It is also really hard to capture a picture of it, because I typically inject in areas inappropriate for photography!

Since this is my first time on insulin pens in thirteen years, I am not sure if it is normal or not. I asked around a little, and no one else IRL has experienced this.

Has anyone else seen or heard of this before? I don’t want to give up my MDI combination, but I’m not really interested in having this continued (allergic?) reaction either.

Fourteen

Lilly Diabetes Journey Award DiaversaryToday is my diaversary. It was fourteen years ago that I was finally accurately diagnosed with type 1 diabetes and given my first dose of life-saving insulin.

A few months ago, and only a few years late, I received my 10 year Lilly Diabetes Journey Award medal (application here).

At work, and along with people affected with type 1 diabetes around the world, we have been mourning the death of tireless diabetes advocate, Mary Tyler Moore. Similar to me, she was also diagnosed with type 1 diabetes as an adult. One of the most inspirational parts of her story for me is that she did not let diabetes stop her from living the life and having the career she wanted. I imagine that it was scary for the producers to fund projects she was involved in when they were unsure about her health and how diabetes might impact the production. Her success paved the way for other people with type 1 diabetes to follow their dreams. She was one of the first to prove that people with diabetes can do anything that anyone else can do, just with a little extra planning.

While still in the hospital fourteen years ago, my first endocrinologist told me to go on my planned road trip vacation that was only a few days away. His idea was that I could have diabetes anywhere, so I may as well take it with me where I wanted to go.

Let’s see where I can take it before celebrating my fifteenth year.

Tresiba Ready

An example of 38 hours using Tresiba for my basal insulin.

Anyone else singing the commercial?

My pump break

Just about a year ago, the four year warranty on my insulin pump ran out. I wasn’t too worried because the version of the pump that I was wearing had only been FDA approved about two years before, so the pump that I owned could only be that old.

One of the best times to wear a waterproof pump with CGM integration is obviously at a water park. The advantage is not missing any basal insulin and having idea of my blood sugar without having to carry extra devices.

One of the worst times to wear a waterproof pump to a water park is when the pump is out of warranty. I almost made it through the entire day before the first hint of trouble.

Mostly unrelated picture of the loaner pump

Just before the end of the day, I hit the shortcut button on the side of my pump to check the CGM and instead I got a warning that the pump wasn’t primed. I confirmed the error, which should have taken me to the home screen. Instead, it took me to a blank screen. When I hit the button again, the same error popped up. I could not get out of the error loop. Taking the battery out just put me into a new error loop trying to enter the date.

After a quick dose with a vial and syringe to accompany the ice cream as we were leaving the water park, and due to some great friends and diabetes connections, I was able to use a series of replacements pumps to not miss more than an hour of basal insulin. The next step should have been to start the process to have my insurance pay for a new insulin pump. I hesitated. Even though my insurance is very good for diabetes coverages, it is still a big purchase. It is especially a big purchase when nothing on the market right now is exactly new or groundbreaking.

I headed to my endocrinology appointment last October with those thoughts about the current state of technology in mind. My doctor and I talked about the new long acting basal insulin called Tresiba, and he had heard good reports from his other patients who had started using it. Quicker than I expected, I had a sample of Tresiba pens in my hand, and the rest of the prescriptions and supplies necessary to switch from my insulin pump to multiple daily injections (MDI).

I originally started pumping in January 2004, eleven months after I was first diagnosed with diabetes. Prior to that point I had only used NPH and a fast acting insulin with a vial and syringes. I was embarrassed to have to ask the staff at the doctor’s office about how to use an insulin pen. In over thirteen years, I had never injected insulin with a pen before.

With my limited experience with basal insulin and over a decade of successful pumping, I was always confused when people CHOSE to go on “pump breaks.” I could not understand why they would want to give up what I considered the best treatment for type 1 diabetes.

Now MY “pump break” has been over three months and don’t anticipate it ending anytime soon. It really occurs to me at the strangest times how much I appreciate not wearing an insulin pump. When I get off the couch and don’t have to retrieve my pump from between the cushions. When I use the restroom and don’t have to catch my pump before it hits the floor or someplace worse. When I bolus in the car and don’t end up twisted in the seatbelt. When nothing is poking at my waistband when I turn in my office chair to answer the phone. When I can pass a doorknob or handle and not worry that my pump tubing is going to get stuck. When I can pick out outfits with no concern over where I am going to clip my pump.

I’ve successfully completed two of the most challenging and stressful days of my year using Tresiba and MDI.

The first event was our local fundraising walk, which is my primary responsibility at work. It actually took place about two weeks after the MDI switch. Without even walking the official walk route, I managed to log a half marathon between the set up of the event and the day of the event. Without much time for sitting or eating, the graph on my CGM managed to hold steady.

The second big challenge of my MDI routine was my JDRF ride in Tucson. I took my regular dose of basal insulin in the early hours before the ride started and carried my Apidra pen in my ride jersey. 76.6 miles later, my BG graph was flatter than the elevation map of the ride.

I never thought I’d give up my pump as the best treatment for my diabetes, but it turns out that right now it isn’t the best treatment for me.

%d bloggers like this: