History of my Label – Part 2

Here’s a Part 2 of sorts of my first blog.  Had to take a break from the long winded post yesterday. 🙂 

I referred to that admitting doctor as a dummy – and for good reason (in my not so humble opinion.)  Since I was a little girl, if you’d asked me what I wanted to be when I grow up, I’d have said a Mommy.  It’s a desire that God put in my heart at a very early age.  I will remember this conversation for the rest of my life because it scarred me.  When I was first put into that hospital room, the dr was standing there making conversation with me and my mom, and we asked him how all of this would affect having children down the road. He very sternly said “You will never be able to have children. It will be too hard on your body.”  I was stunned. Who says that to a 17 year old???  And to one you essentially know nothing about??  Not to mention you were WRONG, doc.  Diabetes can and will affect pregnancy. But if your A1C is in a good range and you are monitored closely, you can have a perfectly normal pregnancy – it IS possible. I am living proof.   At the age of 33, I delivered my beautifully healthy 7 lbs, 2 oz baby boy, Alex, via c-section.  I was monitored very closely and had a wonderful team of doctors.  I had regular sonograms and checkups and I was seen regularly by a cardiologist – pregnancy wears on all of your organs and they wanted to make sure that not only because I was diabetic, but because I had been for over 15 years, that my heart could withstand pregnancy. And I got a clean bill of health at every single appointment.  The only major adjustment I made along the way was deciding to go on the insulin pump around the end of my first trimester.  That was because my sugars did fluctuate quite a bit, and toward the end I almost was to the point of being resistant to the insulin.  That growing baby was taking everything I was putting in my body! J But we both made it and were completely fine during and after the pregnancy. I’m still wearing the insulin pump and also now wear the CGM – more on my experiences with that later (all good, though.)

Backing up a little more …. I have had some scares along the way. It’s not always roses and apple pie with this dark horse living inside my body.  When I was in college, I went on the insulin pump for the first time.  I had been on it for a few months and one night got very VERY sick.  Could not keep anything down, and to the point of not being able to get up off of the bathroom floor.  I called the school’s nurse and she told me to drink Diet Sprite.  I did, and it came right back up. Drank water.  That apparently wasn’t welcome in my body, either.  I can even remember the pj’s I was wearing that day, because that was by far one of the most miserable feelings/days I’ve ever had in my life. Lying on the bathroom floor, sitting up long enough to throw up, and lay back on the cold tile floor.  Coincidentally, or by God’s grace, my mom was coming into town that day to visit me for the weekend.  She had driven the 3 ½ hour drive to College Station, and got there in time to take me to the ER.  This was before the age of cell phones (yes, I am that old to not have had a cell phone in college) so she had a message waiting for her at the hotel when she checked in to come see me immediately.  She took one look at me and said, “Let’s go.”   By the time I got to the hospital, I was barely coherent.  I honestly don’t remember how often I was checking my sugars during this marathon of throwing up, all I knew is something was seriously wrong.   I remember having almost an out of body experience, lying on the cold bed in the ER and overhearing my mom talking to the ER doctor and hearing these words coming out of his mouth, “Your daughter could have died, Ms. Young.”  Wait, what?????  Then they gave me a blood gas test.  Let me just say ….. OUCH.  If you’ve never had one of these very painful tests… they take a BIG needle and put it into your wrist, to draw blood out of your artery (instead of the vein).  This particular test measures the level of oxygen and carbon dioxide the blood to determine how well your lungs are working.  I remember watching the nurse doing it, and thinking “wow that hurts” but I couldn’t move or say anything – I was THAT out of it.   After all of the tests were run, it was determined that I was in a severe case of what is called Diabetic Ketoacidosis (DKA for short).   This would be my first of 3 times to be in DKA within a 9 month period- and let me tell you, folks, it is NO fun.   I was put into ICU for several days. My mom camped out for the weekend as planned (although our original plans had long since gone by the wayside) and stayed a few extra days to make sure I was good before she drove that long drive back home, leaving her only child, that had just gotten out of ICU, in college to take care of herself. 

It turns out that my pump had kinked and I didn’t know it. If you don’t know how an insulin pump works, I’ll post about that one day, too. But in a nutshell, you insert a cannula under your skin, similar to how an IV is inserted, and you remove the needle, and the cannula stays inside you – you wear it 24/7 for a few days, then change your site and do it all over again.  Well, that cannula had kinked and by the time I realized it, it was too late.  It only took a few hours.  Once your sugars are too high for a certain amount of time, it gets to a point where it’s too late for you to correct it yourself.     In the hospital, I was put on IVs and rehydrated and had to have a catheter – again, no fun. 

Something else that happened this time was my leg had gone numb on the outside and top of my thigh. I didn’t mention this to the doctor at first because I didn’t think much of it.  But at one of my follow ups with an endocrinologist that I had recently began seeing in College Station (whoop!), I mentioned it in casual conversation.  He became concerned and said that it was nerve damage, caused by the DKA. He gave it a very long name that I cannot remember – but it was in the same area of my thigh every time I “had” it, and the only reason I even noticed it was because when I shaved my leg, or scratched it, I couldn’t FEEL it.  Then one day I thought, “Hmm.. that’s weird. I should probably mention that to the dr.” I had that sensation a few more times, but knock on wood, it’s been many years since I’ve felt it.  

Speaking of nerves, though, I do have tingling/numbing sensations in my hands quite frequently, even nowadays.  The first time I noticed it was also in college. I woke up thinking I’d slept funny on my hand.  It was (and always is) the outside of my hand, along the side, and my pinky, and the top half of my ring finger.  It happens on both hands.  I always thought it was just me, but I have met other diabetics who have the exact same feeling (or non-feeling in this case). So I’m guessing it’s also some sort of nerve damage.  It usually only lasts a few hours, then goes away.  I probably should mention that to my Endo as an fyi…

I mentioned I’d been in DKA 3 times.  The next two were not quite AS eventful but I’ll still give you the short version.   The second time, I was still in college and lived with my roommate, Jamie.  I was in my room studying and not feeling well. Had thrown up a few times but not nearly as bad as that first time a few months earlier.  Jamie left to go to a late night study group. When she got home around 1 am, she came in to check on me and I told her something wasn’t right, I think I needed to go to the hospital.  So she called my mom (who immediately got out of bed and got on the road for the long 3 ½ hour drive south) and told her she was taking me to the ER.  I was again in DKA, but had “caught” it earlier this time. I was still put into ICU but it was not as “bad” this go around since I had caught the symptoms earlier.  The one thing that was different this time, was by the time my mom got there, I was on oxygen because my breathing was very labored. I was very short winded.  (You also have a metallic type taste in your mouth when you’re in DKA, fyi.)   So again, my mom stood by my bedside and helped them nurse me back to health, only to turn around and drive back home a few days later when she was convinced Jamie and I knew how to take care of me.

The third time was much less dramatic – because by now I was unfortunately an expert and should have had a punch card to the ER.  I was out of college and living in Houston.  It was a Friday, and my friend, Sheri, and I were going to be driving to Dallas to see my friend, Richie and his band, Lonestar, play that night at Billy Bob’s.  And the next day, we would be walking in the JDRF walk (ironically this was the only year I’ve missed the walk.) Those plans got changed when I started getting short winded and tasting that metallic taste.   Here we go again ….  But this time I did not throw up.  Caught it WAY early. But I was in fact in DKA, just the very early stages.  (Forgot to mention that by now I owned my own bottle of ketone strips, as all diabetics should, and now knew to test when I felt “off” and the test confirmed I had way too many ketones.)  Got to the hospital but was able to skip the ICU this time.  They rehydrated me and got me back on my feet after a few days.  I even asked my mom to not make the now 5 hour drive south this time – I know it killed her but this time I knew I was “fine”.

The last time I was in DKA was fall of 1998.  All 3 of those incidents happened within a 9 month time period.   I went off of my insulin pump after that 3rd time – went back on shots, 5 a day. But I didn’t want any kinking or anything to cause that again. What always scared me is not knowing how much damage was done to my kidneys, or other organs during that 9 month time. And I may never know the full extent, but I do know how lucky I am to have now (again, knock on wood) gone 13 ½ years without experiencing that again.  There have been a few close calls, but I’ve managed to avoid it so far.

I have also been very “lucky” in that I have only blacked/passed out one time from low blood sugars. It was in 2000, and I had been moving and drinking orange juice all day to keep the sugars up. I finally laid on the couch, felt like the room was spinning, felt like I was calling out for help but nobody was coming.  Then the next thing I knew, I was standing in my kitchen, leaning up against the wall, holding the OJ bottle. So I had enough senses to know to go get the OJ at least.

Oops got even more long winded today …  just have a lot to tell over 19 ½ years! I’ll wrap it up for today.

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About Shannon

I am a wife, a mommy, and a Type 1 diabetic (since '92.) I have had two successful pregnancies - one of which was with twins. I wear an insulin pump- - off and on for 17 years; currently on the Medtronic pump and CGM. I am not a medical professional, nor am I giving medical advice. I am just sharing my day to day stories of someone who lives with this disease every day. My ultimate goal is to raise awareness.
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3 Responses to History of my Label – Part 2

  1. Gina says:

    I am reading your blog daily. Its unteresting to read because you are my sisterinlaw and theres so much I dont know about your battle with Diabetes. It makes me feel even more motivated to continue trying to improve my health, and makes me feel so bad that I had continued to li e an unhealthy life style knowing I am one if the lucky ones that with diet and exercise can reverse this terrible way of life! You always imaze me that you never seem to complain and like you said, you want children and you make it happen!! Always believe that one day there will be a cure for type 1.. its going to happen!! Love you!

  2. Kat says:

    Shannon, wow! I’ve often wondered about your story since I volunteered a bit for JDRF for your team. Enjoying the blog. You have overcome a lot and are quite a champion! not

    • Kat says:

      Uhm… Ignore the “not” please!!! It must have fallen to the next line and I did not see it on my phone. Sooooo sorry! You really are a champ!

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