Sailing … with twins .. 2 years later

Two years ago today .. I was feeling a mixture of excitement, nervousness, and pretty much every other emotion you can imagine. I was set to give birth to TWO babies that day. Our lives would never be the same again. And I wouldn’t change one single minute of it. Ok, maybe I’d get a little more sleep those first few months, but I survived. ;)

Two years ago today, I delivered two very healthy baby boys – one of which weighed 7 lbs 4 oz, and the other was 6 lbs. I was very healthy during my pregnancy. I’d say it was luck that enabled me to have such a healthy pregnancy, and two healthy babies, but I know it’s more than just luck. I worked HARD to keep myself and those babies healthy. Having a baby for anyone takes work. But you add something like diabetes to the mix, and it takes it to an entirely new level of discipline.

I had to be even more diligent with my carb counting, to try and avoid the spikes/high blood sugars. And I had to make sure I was getting enough calories to support myself AND not one, but TWO growing babies. But not TOO many calories because diabetics are known to have larger babies. And I had to keep even more juice boxes on hand, to have when the lows hit. I had to increase my insulin intake gradually throughout the pregnancy because the placenta releases an insulin-resistant hormone, and I had TWO placentas in there. By the time I delivered, I was taking 3x the amount of insulin daily that I was taking pre-pregnancy.

I had to miss a lot of work to go to so many doctors appointments. My OB, my Endo, my high level specialist who took regular sonograms to make sure the boys were growing appropriately. My heart had to be monitored to make sure it could support so much extra blood flow going through my body. I wore my insulin pump and CGM religiously, even though I very quickly ran out of real estate in order to wear them comfortably. But it was necessary in order to keep a close watch on my blood sugars.

I always say that I sailed through both of my pregnancies. That makes it sound easy. And I’ve honestly never sailed a boat. But what I do know about it, is it takes work. You cannot just sit on a sailboat and say “Go” and expect it to go on it’s own – the wind will take it in the direction it’s blowing, but there’s got to be some maneuvering and steering along the way. And that is similar to what I did. My body was going to do what it was going to do, but I was for the most part, in control of the direction it went. Had I chosen to not take such diligent care of myself, it could have easily gone a different direction than it did.

I was told at the age of 17 when I was diagnosed, that because of my diabetes, I would never be able to have children. I hope that people hear my story and know that it IS possible to be diabetic and have not only a healthy pregnancy, but to have a healthy twin pregnancy. I did it.

Me and the boys Easter 2015

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Diabetes talk with my 7 year old

I have a good friend who has a 5 year old Type 1 son (J). And yesterday morning she had to take him to the ER, to later find out he was in DKA. Luckily they caught it early and he’s doing MUCH better today.

But last night, I told my 7 yr old that J was in the hospital and not feeling well. He asked me if he was ok, and I said he was doing much better. He asked what was wrong, and I said “Well, his diabetes made him not feel well.”

Keep in mind .. we JUST had a conversation about diabetes being dangerous the other day …

And he matter-of-factly tells me, “You know, you can die from diabetes.” I said, “Well, you don’t technically die from diabetes. But the complications from diabetes, are what can cause problems.” (He’s not your average 7 yr old.) He said, “Well I’m sure that J will be ok because he takes care of himself and takes his insulin, just like you do. But if you don’t do those things, and take care of yourself, you can die.”

Ugh. I hate that he even knows that. Or goes there. Or that it’s such a part of his life that he is fine talking so matter-of-factly about it. And even more, I hate that he’s right. But I again assured him that I do take care of myself. And that J takes care of himself (along with his mommy and daddy, of course) so we will both be just fine.

He also said, “In the old days people used to die after they found out they had diabetes. They didn’t have insulin pumps, or even insulin a long long time ago. So if someone found out they had diabetes, they might live a few days, or even a few hours.” (I have NO idea where he gets this stuff.) I told him that they’ve come a LONG way with technology that can keep people with diabetes alive MUCH longer. I told him that it’s been over 22 years since I found out I had it – which prompted him to ask me how I knew I had it. I gave him the short version, and he asked me, “But how do you know you didn’t have it a long time before you KNEW you had it?” (again .. not your average 7 year old.) I said that I’m sure that my pancreas was starting to not work for awhile before the doctors realized what was happening– I was told at one point that I’d probably been sick for about 6 months before my diagnosis.

He pondered all of that, and then went back to his Legos. ;)

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Is diabetes dangerous?

This weekend, my family and I were sitting in our church’s Easter service, and out of the blue, my 7 year old looks up and me and says, “Mommy, is it true that diabetes is dangerous?”

Now, he of cours knows I have diabetes. And that I wear an insulin pump. And he knows what insulin is, and that I need it. And that sometimes I have to pause what we are doing because I have to drink a juice box. And that sometimes I may be a little more cranky than other times (if my bg is high). It’s always been a part of his life. But he caught me off guard with his question, and I wanted to find out more about where this was coming from, but decided that in the middle of singing at church was not the best time. ;)

So at bedtime that night I asked him what made him ask me that. He said again, “Is diabetes a dangerous disease?” I answered, “Well, yes, it can be. But so can many other diseases — why do you ask?” He said at school (in science, I assume?) they were talking about diabetes, and the teacher said it was a dangerous disease. I’m not sure how I felt about this because I’m assuming the conversation was something along the lines of eating healthy to avoid having diabetes, but since he didn’t take it there, I chose not to go there.

As I was tucking him in and saying our prayers, I told him that it can be very dangerous for people that do not take care of themselves. But assured him that I take really good care of myself, and I take my insulin, and check my blood sugars, and I eat fairly well … and tried to reassure him that he does not need to worry about me.

I face the same fears that a lot of other diabetics face, but I was not going to put that worry onto him .. so I think I successfully nipped it in the bud and assured him by my words, and by setting an example, that I am doing just fine.

For as long as I can remember since I was diagnosed, I have said that if I was destined to have an incurable disease, at least I have one that I can control. And I still believe that wholeheartedly. As much as feasibly possible, my fate is in my own hands. And I choose to take care of myself so I can be here to watch my boys grow up. :)

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And we have a winner!

I’ve not had the best luck finding Endos ….. It would be an understatement to say the last one I saw was NOT a good fit. After that appointment, I had a few different local friends recommend the same doctor, and one friend (Shout out, Krista!) reached out to tell me how much she loves her Endo, and she drives a pretty good distance to see him. He was very hands on when she had her baby recently, and listens to her, and is current on new/upcoming technology, etc. Figured it was worth a shot try try him out.

I called last Thursday to see when his next available appointment was – she said July. Then she said “Oh wait – we had a cancellation for tomorrow, can you come in tomorrow?” Why, yes, I sure can. It was Good Friday and my office was closed, so that worked out perfectly.

From the minute I walked into the office, I had a good feeling. The staff was very friendly. It was such a different experience than with the last doctor (my last appointment I waited an HOUR to be called back.) The nurse called me back, and she checked my blood sugar, and put it in the A1C machine (my last doctor did not check my bg once or even discuss my pump settings or blood sugars- lets his CDE handle all of that – and I do not have a standing appt with her, just see her “as needed”.)

And the first great news I had was that my A1C had come down in just the last few weeks – it had gone up after all my unexplained highs lately, and they’ve been perfect the last 3-4 weeks. I know that there is usually some discrepancy between a blood draw A1C and the machine in the office, but I was still happy to have seen a lower number (0.6 pts lower).

The nurse then puts me in a room and checks my blood pressure (it was perfect) and asks me a few questions. She was super friendly.

The dr came in after about 10 minutes, and actually walked in and shook my hand and introduced himself. (The last dr never made eye contact, nor did he ever talk TO me, I always felt like he was talking AT me.)

We talked about my pump settings, my blood sugars.. my current medications. He asked some questions about my history. Asked me my opinion on CGMs (he’s a huge proponent.) Asked me to rate my current Medtronic CGM (I have the older version – have had my same sensor for 8 years!!) He asked me if I’d ever considered trying a Dexcom – which I found very ironic because it’s been on my mind a LOT lately to try it out. I even tried making phone calls last week to see if I could test one (called my old Endo, and shocker – they never called me back.) Then he told me that he has one I could wear for a week, if I wanted to try it out? What?? That is PERFECT. He has a patient already signed up to wear it this week, but I should be able to have it by next week – I’m super excited! And I didn’t even have to ask for it. I’ve never had a choice in the devices I’ve used – when I was first put on the pump in ’98, I just went with the one that my dr at the time gave me (Medtronic) and that’s the one I went back to when I went back on the pump in ’07. I love my pump, and tried another brand once, and did not like it, so I went back to Medtronic. I’m not looking to switch pumps, but I am definitely open to trying out Dexcom for the CGM portion of it.

So then he almost threw me a curve ball because he mentioned that he has 100 patients currently on a trial, taking an off label drug called Farxiga to help control blood sugars. Uh oh. That was one of the final straws with the last doctor. But whereas the other dr made it all about me being overweight, and he wanted me to take it to lose weight, this dr made it about having better glucose control. But the best part – he asked me if I was interested, or would I rather wait until more data was collected. I told him I’d not like to participate at this point, but we can discuss down the road. He did not shove samples at me, or push me at ALL. So I’m not sure if this is something that’s truly trending under the radar with Type 1s or if Farxiga just has a really good sales rep in our area and is hitting up all the local Endos .. but I’m not willing to be a guinea pig at this point..

When we were wrapping up, he asked if I had questions. He asked if I needed refills. It was a completely different experience than with the last dr who just got up mid-exam and left to go see another patient.

He walked me to the checkout counter, said he’d like to see me in July for a follow up. And reminded the girl behind the counter to put my name on the list to be next in line for the Dexcom trial. Then shook my hand and said to call him if I needed anything.

I was telling my husband over the weekend that it’s been years (decades, maybe?) since I’ve left an Endo appt and not felt judged.

I was so giddy when I left that appointment, that I could have skipped to my car. But I didn’t. ;)

And best part – he didn’t call me fat/overweight even once. That alone makes him a winner in my book.

***Update: I received an email later the same day as my appointment, but I did not open it for a few days. It’s a patient portal – I can email questions/concerns, and see my medical history, my current medications, etc. WOW. I’m still in shock at the night and day differences between doctor’s care.

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Sharing

I have seen a lot of posts lately about people using Night Scout and Dex Share .. and it looks so awesome to me. I’m not a very tech savvy person, admittedly. But I am home alone a lot with my young boys, as my hubby travels for work. To me, it would be comforting to know that no matter where he is, he could see my numbers at any given time, and he could get an alarm if I’m running too low (or high even). But more so for the low’s. I mentioned this to my mom, and she said she’d love to be able to have this on her phone, too.. but I’m not sure I’d let her do that – she tends to freak out as it is if I don’t answer the phone. haha

I have a Medtronic pump and CGM. And from what I’m finding out early on, it IS possible to use this technology if you don’t have a Dexcom, but it’s ‘easier’ with the Dex … ? And I also found out you have to have an Android device as the uploader, but you can view the data via an iPhone. Problem with that is my husband and I both have iPhones. I’m also not opposed to switching to Dex (assuming it’s even possible with my insurance) I just have a mental aversion to the thought of carrying 2 devices…

And I was talking to my husband more about this the other day and he had some valid comments/concerns.

He said if he was traveling, and saw that my number was low, and he called my cell and I did not answer, he wouldn’t know what to do – is it just that my ringer was off, or was I in the other room with the boys and just didn’t hear it? How long does he wait to freak out and call 9-1-1?

So maybe the weight would be put on to me to make sure to always have my phone close by, and not on vibrate .. but there’s always the off chance that wouldn’t happen.

So I see his point.

But I also think it would be reassuring to me to know that someone else could see that I may need help. It’s never happened since I’ve known him. I have only passed out once in the 22+ years I’ve been diabetic, and that was 15 years ago. But we all know it’s a possibility. So to know we had the technology that he could use- if I wasn’t answering the phone AND he saw on his phone that I was low .. that he could have options to call a neighbor/friend/my mom, etc. seems reassuring to me.

Going to have to ponder this one for a bit more. But still super intrigued. And excited about how far we’ve come in the last two decades.

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Taco Soup – Need help SWAG’ing

I’ve been making a taco soup recipe for a few months now .. it’s so yummy! But for the life of me I can NOT figure out the right carb count/ratio to cover it .. thought I’d throw it out here to see if anyone has any suggestions? I know the fiber in it will play a factor and I’ve tried to account for that… but still not working right.

Here are the ingredients:
1 lb ground beef
1 can tomato soup
1 can corn
1 can Ranch Style beans
1 can black beans
1 can Rotel
1 package ranch dressing
1 package taco seasoning
1 cup water

Ok sounds simple enough, right? But I’ve tried just a normal bolus. I’ve tried a dual wave. I’ve played with the actual carb total. Nothing seems to work. I’m always a little high afterwards.

Thoughts/Suggestions?

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Back on track

I hope to not jinx myself, but I *think* I’m back on track again …. in the last 48 hours, my blood sugars have been in the range of 68 – 129. HUGE improvement from how they’ve been lately. (And I’d like to point out that that is all MY doing and has NOTHING to do with Dr. Douchebag.)

I still have no idea why I was experiencing those highs. And I likely never will know. And yes, it did throw off my A1C last week. But I knew that was going to happen, so I was prepared for it. Good news is, it did not go up AS high as I’d prepared myself for … only .7 points, which isn’t too terrible, considering HOW high I was averaging for 3-4 weeks. And I’m still in a good range overall.

But the other good news is that my blood work overall was much better than it was 4 months ago. I tend to worry about my cholesterol, etc., but ALL of my numbers were not only down from last time, but all were in range. So I’m obviously doing something right. And for that I am HAPPY.

I’m still on the hunt for a new Endo, and I had a few local friends recommend a dr that they all spoke very highly about – so I’m probably going to try him out. And in the meantime, I’ve also spoken to Dr. Gary Scheiner about consulting with him so he can get my overall numbers cleaned up until I can get re-established with a new doctor.

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