Lessons learned

In the last few days, there has been a lot of negativity in the Diabetes Online Community (DOC). Scary stories about kids dying, A1C levels being too high, and the good/bad of going Gluten Free without a celiac diagnosis. Those are only the things I’ve read. I purposely don’t read them all.

But these posts caught my eye…and my heart. The high A1C level that was being fretted over is very much below my daughter’s all time low. (As far as A1Cs go, lower is better…if there aren’t too many hypoglycemic episodes). And people wanting to go gluten free because it seems cool really got under my skin.

I’ve been thinking so much lately about our crazy life with a child who has Type 1 diabetes and celiac and all we do to keep her healthy. And all we endure because we try to keep her healthy. People thinking I demand “special” treatment for my kids. People not understanding when Meredith politely declines a gluten-filled treat and pester her until she has to disclose diagnosis to get them to stop. Eyes looking at us when we check blood sugars in public. People asking why I let my 7 year old have a cell phone (it’s an insulin pump clipped to her waistband, really, it is). These are the negatives.

Today, I have been more focused on the positives. Yes, diabetes can overwhelm me and bring me down. Yes, celiac can as well. However, I have the power to decide that that is not the life I want for me or my daughter. And I can decide on concentrating on the positives.

The kids had a swim meet today. Meredith was disconnecting and reconnecting to her pump all afternoon. She was great about it. She even decided to tuck it in the back of her suit when she wasn’t swimming. (She saw an older kid at FFL do that this summer). She was responsible about it and I was proud. Her blood sugars were running a little high with all the excitement and pump disconnects. Meredith and I decided that it was ok for today and we would correct them tonight if we had to. We decided that we did not want the day to be dictated by blood sugar numbers.

Meredith cheering on her brother.

Meredith cheering on her brother.

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We were even able to find some gluten free options in the concession stand. No gluten free pizza. But they did offer baked potatoes with toppings. Meredith chose a potato with butter and cheese. I was proud of her. Especially because there was a kid having a tantrum because his mom wouldn’t buy him a 3rd slice of pizza. Meredith was content with the baked potato. She was happy there was a choice for her. She knows all too well that she doesn’t always have that option. She also indulged on some gluten free brownies I made last night!!

Almost to the wall for the backstroke finish!

Almost to the wall for the backstroke finish!

We are real. We live in the real world. Where blood sugar numbers can rule on some days and finding gluten free options can on others. We muddle by. We get through. We even thrive. It isn’t always easy. Some days I am ready to throw in the towel. Faith and patience get me through. Along with help and support from a loving family and great group of friends. My outlook on this world has changed with each diagnosis Meredith has encountered. Our family has been impacted as well. And we have learned. Learned that we can do this. That we are grateful for what we have and being together is something special.

My Sweet (Diabetic) Celiac and her Siblings make me want to be a better person everyday. I hope they can look back on their childhood and see that I was trying with everything in me to make their lives happy and filled with love despite the challenges we face. Maybe they will know that in the face of adversity, there is hope and the bad doesn’t last forever. These are the lessons I have learned.

What a month…

Oh so much has happened since my last post. Which, ironically, was about wondering what ELSE could possibly happen. Remind me never to do that again.

As my shingles bout was winding down, I took a trip to Chicago to see my wonderful brother, sister-in-law, and niece. I just had Holden and Meredith with me as Sydney was on a trip with my parents and Carl was “hunting.” It was an incredible time and I cannot wait to go back.

On the way home, we stopped and visited dear friends in Milwaukee who we met at Friends For Life this summer. The 2 hours we spent with them went by at record speed. It was great to see them again and connect.

Our swim season has begun and with it the craziness and running. But Carl is really helping this year and things seemed to be going good. Almost too good.

That’s when the pain hit. Hit me. Hit me HARD. Sharp, stabbing pain in my upper right abdomen. Ignore it, it will go away…it always does. But something was different. It was worse than the “normal” pain I had been experiencing on and off for a while. But, since it was 5pm on a Sunday, I was sure I could power through until morning. I did really great, too…until about 2am. Then I couldn’t take it anymore. So Carl took me to the ER.

Preliminary diagnosis was gallstones. Don’t old people get gallstones? Yes, but old people get shingles, too and yet I had those. Deductive reasoning points to the fact that I am rapidly becoming elderly.

Surgery for the removal of my gallbladder was scheduled. It was even possible for it to be out patient and I could go home later that night. Ha ha! But this is me we’re talking about, and things are never that simple.

And neither was this “routine” surgery. My gall stone ended up being the size of a chicken egg. By gallbladder was so swollen that it attached to my common bile duct and the duct tore open during surgery. Another surgeon was called in to repair the leak. My 90 minute procedure took 4 hours and I was in the hospital for 2 nights. Because of the nastiness of my gallbladder (dead tissue, infected tissue, bleeding tissue) and the bile duct mishap, I had a drain tube. It was in for a week and I was basically prohibited from doing anything other than lounging in my recliner, watching TV, and reading. Which sounds great at the start. But it would be better if you were feeling great. And, after a few days, you start to realize what you wish you could change about the layout of the living room furniture.

That was 2 weeks ago. And I am still recovering. I still have pain and do not feel like myself. And to top it all off, my low back decided to act up and I can hardly walk. I see my chiropractor tomorrow. I’m sure all the laying around hasn’t been the best for my back. This back pain is sure adding fuel to the fire that I am becoming premature elderly.

I hope that my body decides to like me again and I begin to feel close to my age if not younger. Through all of the trials of the fall of 2013, I have not lost my faith or my hope. They have gotten me this far…they can get me through anything.

You have got to be (expletive) kidding me

beautyThat has been my mantra the last few months. Just when you think it can’t get worse, there it goes. You’ve got to be (expletive) kidding me.

It all started at the end of August when our wonderfully awesome (read that dripping in sarcasm) insurance company decided to stop covering Meredith’s test strips. They would cover a different brand at an affordable price, but not the ones we needed and wanted. I wrote an appeal letter and was denied. I filed for an appeal hearing. The hearing was by telephone and took all of 3 minutes. 10 days later, I got the letter that my appeal was denied. So, we scrambled to get the meter and strips that they would pay for and are trying to move on.

In the midst of all of the insurance appeal, my grandma had a stroke. It was a significant stroke and she passed away 6 days later. So we said goodbye to her and spent time as a family together. Of course, my insurance appeal hearing was the day after her funeral, so I maybe wasn’t as prepared as I could have been.

On a happy note, my daughter turned 11 and my cousin celebrated a beautiful wedding in the days after grandma’s funeral. Those were extremely happy occasions and being with family made them even more so. I wish Emily and Josh all the happiness in the world as they start their married life together.

Now, for the real, you’ve got to be (expletive) kidding me. In early October, I got shingles. And not the kind you put on your roof. The kind you only get if you’ve ever had the chicken pox. I am old enough to have had the (expletive) chicken pox. Of course, when I was 4 I handled them pretty well. At least that’s how I remember it. My mother could have a different memory of the experience. So, shingles suck. The pain is horrid. The rash is even worse. And the burning under the skin makes a sane person want to stick needles in their eyes just to have something else to cry about. It has been 11 days, and they are not completely gone yet. The pain is getting better. The rash is starting to scab over and itch like a son of a (expletive). But I dare not scratch. Touch on the affected area is even worse than the pain itself. Yeah me!

The latest, really?, You’ve got to me (expletive) kidding me came last night about 9:30. Our power went out. Just our house. Not the neighbors…just us. So, my dear and loving husband called the power company. They gave no time line. But within an hour, we had a worker at our house. He said there was a break between the power pole and our house. At about 1:30am, after digging in our back yard, it was determined that the break was across our road in the ditch. Digging there would require gas and phone lines to be marked. And the electric company put out a call. At about 4:00am, the digging started. And, our power was restored at about 6:20am. I am so thankful and impressed with all of the people who worked all night long for just our house. It was dark and raining and we live on a state highway. Thank God everyone was safe.

So, my mood has been a little on the harsh and sarcastic side of the spectrum. Even more so that usual. I keep reminding myself that these are the times we need to experience so we are thankful for the good times. Without the bad, would we really appreciate the good for how good it is? If you answered no, you’ve got to be (expletive) kidding me!!

Diabetes never sleeps….and neither do I

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Coffee. Dear sweet coffee. My life line as of late. My motivation for getting out of bed and the reason I stay out of bed. I am sleep deprived. And overworked. And underpaid. But that’s an entirely different blog altogether.

Blood sugars have not been kind to my daughter lately. She has been incredibly active during the day! Just as any kid should. But for the diabetic child, and that said child’s parent, activity means so much more. It is necessary for raising a happy, healthy child. It is a great way to burn off energy. It really helps with high blood sugars. And it can cause severe low blood sugars. That seems to be where we are of late. And when I say late, I literally mean LATE.

Over the last 5 years, I have been pretty good at figuring out when a nighttime low will strike and I have even prevented a few. But this is diabetes. There is no rhyme or reason. There is no predictability. What worked once may never work again. Or it will work the next 20 times and not the 21st time. I am never happy when the nighttime low hits. But I treat it and wake myself up enough to make sure that it is gone. Dear, sweet Meredith sleeps through all of this. No waking when I jab a lancet into her little finger and squeeze blood out of it. No waking when I stick a straw of a juice box in her mouth and tell her to drink. No waking when I tell her to open her mouth and chew the fruit snack I just shoved in it. She and I have this thing down.

And she wakes up refreshed after a good night’s sleep. She looks at her night stand and sees the empty juice box and asks if she was low. I mumble something about coffee first, questions later, and our day starts. Or mine continues. It started several hours ago.

Add to all of this a son who broke his arm. He tripped this weekend and broke his radius. So I carted him off to the ER and got him taken care of. We got home and I got him settled in and was taking care of his ice pack and pain meds when the Contunuous Glucose Monitor alarmed. Great. Just in time for low blood sugar at bed time. My son is really understanding. Go, take care of Meredith, he says. But I can tell he is in pain and I want to take care of him, too. But low blood sugar can get out of hand way too quick and he is stable for the moment. Between the 2 of them, there wasn’t much sleep for this mamma.

And then there was the guilt. I hate having to “choose” which kid to take care of. I want to devote all my attention to the kid with the broken arm, but diabetes has other plans. I always feel that my 2 non-d kids get the shaft when it comes to time and attention, and I sure felt it the other night. But we do our best. It’s all I can do. And pray that they understand and can forgive me.

As much as I am making this about me, it is really about my kids. Meredith is 7. She has had fluctuating blood sugars over the last few days. And as tiring and frustrating that is for me, I cannot imagine what her little body is going through. I can sleep when I’m dead, no big deal. But her body is all over the place. And yet she carries on like nothing is happening. And my awesome son. He’s 13. He broke a bone. And he is healing and dealing with a sleep deprived mother. More power to him. And now that he has a cast, I hope he can get the rest he deserves.

I am dedicating my sleep-deprived ramblings to finding a cure for T1D. So all of us parents and care givers can finally rest easy.

** an edit here. I just published this and Meredith called me. She told me she was looking at apps in grandma’s new i-pad and she found some cool diabetes ones I can put on my phone. That kid is incredibly amazing. As are all the other T1Ds out there. NEVER GIVE UP!

Be Spudtastic!

This weekend, something incredible happened to me. I participated in my very first ever organized sporting event. It was a local run/walk. Since I have been walking about 10-15 miles per week this summer, I decided to sign up for the 4 mile walk/run.

The event, The Tater Trot, is held annually in our community. This was its 33rd year. It starts and finishes in the park across the street from where I grew up. My parents still live there. As a kid, I remember sitting in the front yard watching it. I was never a runner, and at the time it was only a 10K. I never in my wildest dreams thought I would ever be part of the event. Since I was a kid, they have added a 1 mile fun run and the 4 mile walk/run.

When I mentioned wanting to do the walk, Meredith asked if she could do the fun run. My gut reaction was to tell her “no” as I knew I couldn’t run it with her. But I told her if she found someone to run with her, she could do it. All I could think was that she would go low and pass out on the street and people would run past her and I would be at the finish line crying wondering where she was. But I took a deep breath and reasoned with myself. She asked a friend of Holden’s and I registered them both.

Sydney asked if she could walk with me. I was so happy to have someone to walk with! Then I heard that the mom of the girl who was running with Meredith was running the 4 mile. Turns out my idea inspired her! But I was filled with anxiety. I have never been very athletic and this was a timed “race.” No matter how many times I told myself it was just a 4 mile walk, I was still thinking I was going to be in a “race.”

A year ago, the thought wouldn’t have crossed my mind. But I am trying to get outside of my box. And this was about as far outside my box as I could get. I would be with actual athletes. And I was convinced that I would finish last. No big deal, I told myself, it would be better than not doing it at all.

The night before, I couldn’t sleep. I was so filled with anxiety. For Meredith, but more for me. Meredith and her friend did great! I am so thankful she had a running partner who encouraged her when she wanted to stop. They finished in 12 minutes!! Not too bad for a kid who had never run a mile before. (She didn’t think she needed to train too hard!!). Our group was at the finish line cheering away. But now it was time for the 4 mile.

I gave myself a few mental pep talks. And then the gun sounded starting the “race.” So many people passed me. Even Sydney was a little ahead of me. The sweet heart slowed down so I wouldn’t be alone. I kept apologizing to her for being so far behind. I know I was dragging the kid down. But she stayed with me the entire time. I know she could have gone faster and I really felt like a charity case. I had done a few practice 4 mile walks and my “best time” was about 1 hour 11 minutes.

When we were about a half mile away from the finish line, I looked behind us for the first time. There were a few people! Wow, we weren’t last! But a few of them passed us before we finished. As we neared the finish line, I saw our friends had waited for us. The mom was done running for about 20 minutes and they could have been long gone. They were sitting on the curb and when they saw us, they stood up and cheered us on!! I told them they could have left, and they replied, “We couldn’t leave with our team still out there!” Then I saw my mom, at the finish line cheering me on. I tried so hard not to cry, and I don’t think anyone saw me, but I did. Having my mom and my friends there was so incredibly awesome. Then I looked at my time. 1 hour 5 minutes!! I took 6 whole minutes off my “best” time. And when the results were posted, I finished 4th from last. Yes, there were 3 people behind me.

1 hour and 5 minutes may seem like a long time for a 4 mile walk. And I think about 100 people finished ahead of me. But I was out there and I did it. I am proud of that 65 minutes that I was out there walking. And there were people at the finish line who believed in me and waited to see me cross that line. I may even do it again next year. And I know I have people on my side who support me and believe in me. I now have a time to beat. And if I keep up on my walking, I might finish in less than an hour. I have 364 days to work on it.

The theme of the Tater Trot is “Be Spudtastic.” The Tater Trot honors our community’s strong potato growing roots. The 10K even runs through a potato field. And the logo is a running potato.Unknown-4 With this guy on your side, how could you be anything but Spudtastic?

Back to School with a Diabetes Mom

The time has come. The dreaded back to school season. My kids start school on Sept.3. So I have about 3 weeks to get everything ready. Not too much of a problem if all I had to do was purchase and gather all of the items on each of my 3 kids’ supply lists. But the part that is always challenging is being a D-Mom!!

A D-Mom knows that back to school season means lots of phone calls, coordinating schedules, and buying even more supplies. First all the phone calls. One to the endocrinologist to request a health plan/504 plan. These plans are medical guidelines for the people at school responsible for caring for/assisting to care for our kids. The plans spell out what to do in case of high blood sugar, what to do in case of low blood sugar, who to call in an emergency (hopefully they know to call 911 if the D-kid is unconscious), when blood sugar should be checked, that bathroom breaks and water bottles are always allowed, that tests should not be taken in the event of out of range blood sugar, and much, much more. Then its the call to the school to schedule a meeting with the teacher/school nurse/principal/school secretary to discuss all of the ins and outs of the health plan.
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So after many phone calls, and scheduling meetings, and actually meeting with the school personnel, there is the stocking of supplies. This can vary from kid to kid and school to school. For me, it means buying glucose tabs, juice boxes and fruit snacks to stash in each room Meredith will be in at various times of the school day. It means making sure I have a glucagon kit that is not expired to keep in the school office. Even though I want to keep it with her, that is the one school policy I haven’t challenged. It means packing up a stockpile of test strips, pump supplies, alcohol wipes, syringes, sharps containers, lancets, ketone strips, and more (I just can’t remember what else I have in that neat little box). Whew, D-Mom is ready for the first day of school!

Now, add Celiac Disease into the equation. That means that the above-mentioned snacks all must be gluten-free. It also means that Meredith must have a packed lunch every day. images This is a picture of an organized, healthy lunch that I wish Meredith took to school everyday. But I live in reality and in reality, I don’t have time to be that organized. I also despise packing lunch. But, I do it for my daughter. Lunches that are as healthy as I can make them and that contain carb counts for everything in the lunch box. If Meredith didn’t have Celiac, I’m sure I would be meeting with the cooks about carb counts for the school lunches, so I guess that’s one less meeting for this D-Mom.

Now for the very worst part of D-Mom back to school. Actually taking the D-kid to school and leaving her there. It gives us anxiety, and a nervous feeling like no other. Especially when they are young. 4K, Kindergarten, 1, 2, 3 grade. At least I’m hoping it will be better for me when Meredith starts 4th grade. She will be in 2nd grade this year. I know she will be fine in my head, but my heart doesn’t know what will happen. It’s like a huge fear of the unknown, even though I know it will be ok. It’s the same school, with the same secretary and principal and teachers that have been there all along. But she’s been home for 3 months and I like that. And I know how she is and what she’s doing and I can check on her whenever I want. Faith and prayer get me through the first week. And good friends and other D-Moms help so much. And, I remember:images-2

Summer Moments

This week has really been one for summer moments. We have been busy every night with something different and something that does not happen on a school night.

Monday night, my mom and I took the kids to see a movie. Very good movie and the kids were very well behaved. We got home late and stayed up a little later. Isn’t that what summer’s for?

Tuesday night, we had our JDRF walk awards banquet/dance party. The kids invited some friends, so away we went with 5 kids and 2 adults. The 2 hour drive was fun. Listening to the kids talk and interact was awesome. The way home was even more fun. We drove into the setting sun. It was a beautiful drive. The kids were singing along with the radio and the landscape seemed to paint the picture of what they were doing. Winding down after a long, fun day. Setting sun on green fields, trees blowing in the breeze, the air cooling off after a hot day. And the kids singing songs and talking quietly about each song. I want to hang on to this memory, as these are the things that summer memories are made of.

Wednesday night brought a different kind of fun. An impromptu dinner with my sister-in-law and niece at my parents’ house. The kids loved each other’s company and it was great to catch up with my sister-in-law. Then the girls and I stopped by a co-worker’s house for a going away party for another co-worker. The party was in a nice neighborhood and all of the kids were having a great time. They were around the neighborhood and visiting friends they had not seen in a few months. I was glad they had the experience of being in a neighborhood with kids. We live in the country and it is not conducive to running 2 houses down to play with the neighbors. Especially because there really aren’t any kids on our immediate block. Which, to make a full round of the block, is over 4 miles. I grew up in a neighborhood with lots of kids and lots of outside fun in the summer. My heard smiled when the kids started playing Ghost in the Graveyard. A great childhood memory for me. Again, a moment to hang onto. This is summer at it’s very meaning.

All too soon, we will be transitioning into the next season. And these fleeting, carefree nights will turn into something else all together. I intend to spend the next few weeks making the most of each summer moment. I hope you do as well.