Hurdles

A rarity-two posts in one day.  But, I don't want to forget tonight.

It was an ordinary night.  I was making dinner.  The hubby was still at work.  Jess left to go upstairs and I didn't even notice.

"Can you come here mom?"  I hear from upstairs.

And, there she is.  She has the site change all set up and she is holding it on herself about to press the button.  She has done this but once before, and it was very directed by myself.  Her fingers technically pushed the button, but they were under mine and there was a lot of coaxing.

"I'm so disappointed- I wanted to come downstairs and tell you I did my own site change."  "But, then I  decided I wanted you here for this.  I'm so scared mom- I'm shaking."  And, she is.  Her whole body is trembling, especially her little hands.

"I can do this," she says.  "I'm wearing my bracelet."  She is wearing an "I Can Do This" bracelet from the Friends For Life conference (The "I Can Do This" project is amazing-check it out!)  "YES, you can," I reiterate.

And, she does.  The site goes in.  I truly don't think I have ever seen her so proud.  She jumps up and down screaming, hugging me tight.  She calls daddy at work.  She runs downstairs and she and Courtney do "the happy dance."  I am so incredibly proud of her.  And, more so - I am so incredibly happy FOR her.  What a huge hurdle.  What a huge step towards independence.

And, for one split second I feel a bit of pain.  I have done so many site changes for her.  I have loved being able to take this one part of the burden away from her just a bit.  Have I done my last site change?

The thought passes as quickly as it came.  Happiness floods me.

And, my sweet little girl says "Mom, if I'm tired or just don't want to do one---will you still do a site change for me?"  "Sweetie- even if you are thirty years old and you call to tell me you're tired and sick of it and you just need a break-I'll be there."  And we share the sweetest hug.

I'd like to think this has been a life changing summer for Jessica.  We found the Children With Diabetes support network and so many amazing, amazing people.  She knows we have already registered for next year.

We have had a wonderful babysitter who happens to be a college student with Type 1 with us.  I can only imagine the comfort this has brought Jess.

I hope these memories and experiences are enough to help her through this year.  She'll be the only Type 1 kid at her school this year.  The only other Type 1 having gone on to middle school.  I know it is lonely.  And, it is no fun to be different.  But, she is also but a phone call or email away from so many who support her now---so many who know just what it is like.

We have her diabetes appointment Monday.  As usual I fear the "mommy report card."  But, I am also glad it is still mine to feel guilty about.  I dread the time when she takes ownership and feels the guilt and frustration that my husband and all other Type 1 friends I have talked to feel when their HgbA1c is not up to par.  I try to remind myself that we have accomplished so much this summer.  Even if her number is not at goal, it can not take away from the hurdles we have jumped.

Kuddos to the One Touch Verio IQ

While at the Children With Diabetes Friends For Life conference we had the exciting opportunity to experience the exhibit hall!  I felt a little hypocritical at first.  As a physician I don't interact with pharmaceutical representatives (aka "drug reps".)  In fact the Department of Family and Community Medicine where I work has a policy against meeting with them at our offices or taking any kind of food or monetary gifts from them.  I agree with this overall---there are good studies demonstrating the influence meeting with them can have on physician prescribing patterns.  It is easy to be swept away by their sales pitch and not stick to evidence based, often less expensive medications that work.  In addition, ethically I do not feel physicians should accept meals or gifts from these companies---the money should go towards research or programs to aid the financially disadvantaged with obtaining their medications.  So, it was a bit of guilt that I entered the exhibit hall.  I made the psychological decision I was entering as a mom, not a physician.

I was bombarded by booth after booth and saw many new and exciting products.  I spent at least a half hour drooling over the Tandem T-Slim insulin pump and wishing I had enough money that I could surprise my husband with it.  But, more than that it gave me hope for what is yet to come.  If Jess can have something like this in high school I doubt she will be as bothered carrying an insulin pump.  For those of you that haven't seen it---check it out.  It is smaller than an iPhone and looks almost like one, complete with a touch screen.

And, then I saw it.  The One Touch Verio IQ.  This little meter is amazing.  First of all---it is small and light.  You can barely tell you're carrying anything.  It has this nice color screen as shown above that lights up.  And, it even has a sunshine on it!  How cheerful is that?  Yes- you have to prick your finger now.  And, yes that sucks.  But, look---the sun is shining and it is a happy day.  Subliminal?  Maybe.  But, I find myself feeling a bit more cheery every time I see the screen.  One of my favorite features occurs in the dark of night.  Hundreds of times I have tip toed into my daughter's bedroom and used my cell phone as a flash light to try to see what I am doing to test her blood sugar.  I have missed many a time, accidentally getting blood on her sheets or pajamas instead of the testing strip.  This meter has an amazing light.  I can see everything!  And, that little sunshine is there cheering me up a bit in the dead of night.  But, here's the best part---it tracks the blood sugars and alerts you to possible patterns with a friendly message.  Whoever invented it was smart enough to not come up with messages such as "Hey dumb shit---you've been high every day after breakfast.  Do you think you should change your breakfast I:C ratio?"  No- this meter tells you in a very friendly manner that it is tracking a pattern you might want to be aware of (without reminding you that you really suck at downloading your daughter's meter on a regular basis, and that it often takes days for you to think- "huh- I think she's been high every morning after breakfast.")  This is even more important for low patterns!  I am already seeing tighter control for Jessica.  Its like partially being able to delegate all the analyzing that is involved with managing this disease.  Now- if I could just teach it to cook!

Does it have down sides?  Sure.  For one, it doesn't remotely control her insulin pump.  So, after I check we either manually enter her blood sugar into her remote meter or pump.  So far, even Jess likes the Verio so much that she is only happy to do this.

I hear it downloads to Diasend as well.  We have an endo appointment Monday so I guess I better figure that out this weekend.  And, yes, the last time I downloaded to Diasend?  I think about three months ago before her last endo appointment.  Sigh.

Home

Beach Party and Banquet

In early July we attended our first ever Children With Diabetes Friends For Life conference.  I hope to never miss one again.

I have been swamped since returning, but in spare moments have wondered...how could I even use words to express the enormity of this conference?

Enormity in so many ways...Size: over 3000 people all living with Type 1 diabetes in one place...Emotions: I don't think I have ever cried and laughed so much in one week...Learning: so many educational sessions all running at once-at times it was hard to choose just one...Fun: from the banquet to the beach party to the exhibit hall to Sports Central-the fun didn't stop...Connections: we made friends and built bonds that we hope will continue year after year.  Gone was the need to spend time explaining Type 1, and how we have to live, and please don't get that deer in the headlight look...instead instant connections were formed...all of us living with this shared bond.  It was like coming HOME.

So many moments fill my memories...sitting at dinner one night in the hotel at a Hibachi restaurant and looking around the table to realize everyone at the table was from the conference and living with Type 1.  All the kids (and adults!) checking blood sugars and taking insulin at the same time.  Green and orange bracelets everywhere (the bracelets of belonging...green for having Type 1 and orange for those who love them.)  Looking around the hotel pool and seeing not only a sea of bracelets, but also dexcoms on childrens' arms and pumps everywhere.  Having moms I don't even know offering my daughter glucose tabs when she was low in the pool.  Looking around the hotel and seeing test strips everywhere...and they weren't ours!  Talking with other moms and hearing over and over that we share the same fears.  Getting to know another woman who is also a spouse and mom to a Type 1 and finding out we have so much in common in our unique roles as dual caretakers.  Watching Sean connect with so many other Adults with Type 1's (there is an entire track at the conference for Adults with Type 1.)  He has spent so much of his life with diabetes in complete isolation...it was almost like watching a butterfly emerge from a cocoon as he bonded with these wonderful adults.  Meeting so many celebrities living with Type 1 and watching the stars in my daughters eyes as they interacted with them.  Going from booth to booth in the exhibit hall and having a chance to see new insulin pumps up close, taste different glucose tabs, see new tools to make life easier.  They even had a Build A Bear exhibit to make Lenny the Lion who has Type 1 with parts of his body all ready for kids to practice insulin shots or pump/Dexcom insertions.  Learning about Coco-the Disney character who has Type 1.  Seeing the convention center covered with Children With Diabetes posters, and collages of all the kids.  Meeting so many heros...young and old.  I am simply in awe of the children and adults living with Type 1.  For all of these moments, there were hundreds more.  It was quite simply like feeling like you finally found HOME.

I was not expecting the complete pit of emptiness that enveloped me the day the conference ended.  We made the mistake of staying one extra day.  We watched the orange and green bands slowly disappear from the hotel. It was culture shock to walk in the lobby the next morning and not see a single green or orange bracelet.  Likewise, we made the mistake the night the conference had ended of walking through the convention center to get our car.  All the posters and decorations were gone, and in their place the ones for the new conference starting.   I haven't felt that empty in a long time.  This was shared by every member of my family.  All four us forced smiles and tried to cheer each other up.

This week Jessica's green bracelet finally fell off.  The look of devastation on her face was not easy to take.  I asked her why she was so sad the bracelet had come off.  She said "Because it meant I am not alone and it reminds me of all the happy memories of the conference."  I had her tape it to her desk where she can look at it and remember...until next year...when we return HOME.  

Lenny the Lion with his insulin pump and Dexcom

A Drop of Sadness

You will be ten soon.  A decade.  You don't remember life without diabetes.  But, I do.  Our first seven years and three months were without fingersticks, site and dexcom changes, highs and lows.  I worried about normal childhood things, but not that you would die in your sleep.  Your little fingers looked like they do in this picture---free from the callouses of multiple sticks.  But, your smile is the same.  You've always had a smile that could light up the world.

I know you are fine.  I know we are lucky we had seven years diabetes free---so many I have met did not even get that.  The painful moments are few and far between now.  You are growing up into such a beautiful young lady.  I am so proud to be your mom.

I can't help but wish you remembered "before."  We had such fun times.  There were times I let you eat as much candy as you wanted, times you drank tons of the chocolate milk you love, times I didn't ask you to check your blood sugar, or ask "are you high...are you low?"  Times we just took off for fun "mommy days" without the big diabetes backpack following along.  There were times every third day didn't involve the site change you still hate so much.  Times you didn't have to wear all these gadgets around your waist.  But, I also know maybe it is easier you don't remember.

You will be ten soon.  And, despite the drop of sadness I feel, I remind myself that a very short time ago you would not have turned ten.  And even though insulin is not a cure, it has kept you alive with your smile that lights up the world.  Happy Birthday baby girl.  I love you more every single day.

The Monkey on Our Back

blood sugar checking in the wild!

Vacation with diabetes...an oxymoron? If not, then certainly at least an adventure.

Day 1: Kuddos to mom...I remembered not only to set a temp basal for the long plane trip, but also to re-set the clock on her pump for the time change. Well done, yes...well done. Short victory...we get in very late and Jess wakes the next morning in the 500s despite going to bed in the low 200s. Delayed effect of inactivity??? Stress of traveling??? Pump site all ok and she comes down. I am left wondering how to prevent this in the future as I already did the trick I knew by increasing her basal rate for the plane ride. Hmmm.
Diabetes 1. Mom 0. 

Day 2: Sporadic blood sugars all over the place. Imperfect carb counting. Car ride. Stress. Who knows. But, no higher than the 300s so we'll count this as a tie.
Diabetes 2. Mom 1.

 Day 3: Awesome day of hiking. Remembered to bring supplies for emergency site changes, lows, glucagon, snacks, water. And, that is in addition to first aid kit, snake bite kit, biodegradable toilet paper, survival kit, layers, and lunch. We check frequently on the long hike, and have an incredible day of hiking to mountain lakes.
Diabetes 2. Mom 2.

 Day 4: Wake to a night of high blood sugars and ketones, with a much despised 2 am site change. Leading theory...it was HOT on the hike. Hotter than the beach. Both the hubby and I decide that the insulin in her pump tubing probably went bad. We change the site and the insulin. By the next morning trace ketones and blood sugars in goal. We set off for a day of white water rafting. We haven't taken Jess White Water Rafting before and Sean hasn't been since he has been on the pump. This takes some preparing as the dry bag they give us is very small and won't be reachable during most of the trip. I put skittles in triple ziplock bags and stick them in Jess's pants for emergency lows while on the water. We have an INCREDIBLE day and are thrilled the girls fall in love with white water rafting as we previously have. Diabetes won at night, but we'll celebrate a victory for the day!
Diabetes 3. Mom 3.

 Days 5-10 more of the same. We travel to our cabin in Wyoming which is on dirt roads and without reliable cell phone coverage or electricity. We go on long hikes without cell phone coverage. All of this means thinking ahead to be prepared to handle any diabetes emergency ourselves, as help may take awhile. I talk out loud to Jessica as I pack for these outings. I explain why I am bringing the different things I am bringing, and how they would help us if her pump fails, or if she has repeated lows.

In the end, although we were forced to travel with an unwanted monkey on our backs, I would declare the trip a victory. I want Jessica to see that she can do anything. Diabetes shouldn't stop her from climbing Mt. Everest if she so desires. The question should not be IF she can do it, but HOW she will do it. I'd like to think we are showing her this. We have managed to keep doing all the outdoor activities we love despite dying pancreases. My hope someday is that she will be cured of the monkey on her back. But until then, I want her to see it as all it is...an inconvenience not a limitation.

The Blame Game

Do we as human beings need to blame someone or something? When Jessica was first diagnosed I blamed myself. I knew genetics had contributed, but something in her environment had tipped the scale. Was it that I only breastfed for 9 months? Did I allow her to drink too much cow's milk? Was it that I put her in daycare so I could finish my residency and begin working as a family doc? What environmental insult had I not protected her from? Thankfully, those days have past. I now only rarely give thought to what triggered the death of her pancreas. It is what it is. And, truthfully I now see so many ways that diabetes has formed her that I can't imagine what she would even look like had it not occurred. I'm thankful for time. It does heal. But, I still blame myself for many things. Work has been crazy. And, lets face it...diabetes and all of the carb counting has destroyed my love of cooking. I now view all the meal planning and measuring as a dreaded task that I am only too happy to avoid. Others talk of retiring if they won the lottery. Not I...I would hire a chef! We've eaten out more than I would like to admit this month. Although we have gotten pretty good at guessing carbs, it is not the same as when we eat at home. I can pacify my guilt in the moment and tell myself restaurant fajitas are somewhat nutritious. And, geez...at least we know the carb count of a Happy Meal. But, it is not the best thing for Jess. And, I know that. When her numbers are high or I failed to predict a low...those all lead to the blame game as well. And, I am not alone in this unrealistic game. I diagnosed a patient with new onset Type 2 diabetes last week. This is not unusual. Sadly, I do it all the time. I am always learning from how different patients process the diagnosis different ways. Some blame me..."Until I came and saw you for a physical I was fine...you gave me diabetes." Others meet it with denial..."No one in my family has diabetes...are you sure your test is right?" This patient blamed himself. I haven't seen him often. But, I've been slowly getting to know him. He's wicked smart and very involved in his healthcare. I last saw him over a year ago. He's not from this country. But sadly, as so many immigrants, he has quickly become assimilated into our wonderful American society...with its fast food at every corner, overall lack of exercise, and busy, hectic pace. He's always had normal bloodwork...we've even checked a HgbA1c...not standard of care in someone who's sugars have always been normal, but he requested it given that his mom has diabetes. He called me a few weeks back. "My sugars have been running high." Apparently he has a meter at home and has often checked his sugars in between doctors visits. "I need to be checked for diabetes." I ordered the appropriate blood work which did indeed meet the diagnosis. And, I brought him in to talk. I walk in the door and he greets me and then says "It's my fault." "I haven't been eating right or exercising...I've gained some weight...this is all my fault." The Blame Game has started. Whoa. Sit down. I tell him many things that I hope are comforting...this is not his fault. I have patients that are 300 pounds and eat Ho Ho's for breakfast and they don't have diabetes. And, even if they did it wouldn't be their fault. In my head I think to myself if we are going to blame anyone, blame America's society and its lack of emphasis on healthy eating and exercise. But the truth is it is no one's fault. Some people get lucky in the gene game and others don't. Sure environment plays a role, but it is not the only player here. I tell him that we all need to focus on healthy eating and exercise, and that just as I try to do that, I hope he will too. But, we are not perfect and we all can only do our best. We talk about different ways he can make changes and how we will work together to manage this. I ask him about his mom. "She's got it bad" he tells me. "She's on insulin." I check my baggage outside the encounter as I think to myself that I wish that wasn't the definition of "having it bad." I talk with him about how proactive he has been in catching it early, and that I know we can work together to keep him healthy. I'd like to believe him when he tells me how much better I have made him feel. He says he's glad I'm his doctor and he feels so much more hopeful. I'd like to think he won't go home and continue the blame game, but that he will focus instead on being positive and making positive changes. If I've made that difference, I've done well. I know that in the end it won't be the metformin I prescribed him that will ensure he does well. It will be his acceptance and his sense of control over this new diagnosis---his ability to shift from self blame to self help.

Keeping Watch

Murphy's Law: Jessica's blood sugars will choose the seven nights I am on duty alone to go completely haywire. I freakin hate Murphy's Law. I am exhausted. Utterly and completely exhausted. In diabetes defense, it is not entirely the blood sugars' fault I am so tired. I sometimes wonder how much medical school and residency have molded me in how I care for Jess. Do I worry about different things than other parents because I have seen so much? Am I harder on myself as I have been exposed to years of hearing about the "non-compliant diabetic?" I know it is because of my medical training that I try so hard to empower Jess---to make this her disease as much as it can be a 9 year old's disease...to teach her and let her make as many decisions about her own care as she can. It is also my medical training that leads to me sleeping horribly when I am on my own with her. A common feeling among my friends in residency was the huge PHEW you felt the morning after call when an unstable patient had not died on your shift. This feeling really can not be described unless you have experienced it. I remember so vividly sitting apprehensively multiple times during residency and getting "sign out" on unstable patients that might not make it through the night. I would count down the often 24 or more hours I was on call as I kept such a close watch on these patients. I absolutely did not want the patient to die on my shift. Obviously, I did not want the patient to die at all...but every resident I knew would breath a sigh of relief when they could sign over these unstable patients and go home to rest knowing they had done their very best and the patient was still alive. In some weird way when I am alone at night with Jess these memories and feelings return. When the hubby and I are both here at night the responsibility is shared. If I don't hear her Dexcom alerting us that she is low then he might. There is back up. But, when I am alone I am transported on some level back to residency. Jess is my only patient and I am on call every night. And, God dammit, nothing better happen to her on my shift. The "dead in bed syndrome" haunts me when I am alone at night. I wonder for the millionth time why she does not wake when she is low. I simply can not fathom going in her bedroom in the morning and finding her dead. I can't imagine ever recovering, nor can I imagine living the rest of my life knowing that I was the one here alone when it happened, and that I failed to keep her safe. This would be the ultimate failure as a parent and as a physician. It is like her pancreas knows my fears and taunts me. One night this week she was high all night. She had ketones. Jess pulled out her site to check as we were both sure it was kinked. It was completely fine which led to her crying and saying "Daddy inserted that site...I want daddy to insert my site." Of course, she knew he was at the hospital and couldn't. I reassured her that I do kick butt site changes and thankfully we did not hit a nerve. She continued to run high and for the life of me I could not figure out why. The next night...lows. So much scarier for me then the highs. I no sooner would treat a low and give a snack then the Dex would be going off again to alert me she was falling fast. This after a night of highs with nothing different. And two more nights with lows despite changing basal rates. Tonight I went to bed at 9 pm...simply could not stay awake any longer. I woke from a sound sleep to my hubby shaking me at 10:30..."I'm so sorry but you have to get up. Jess has been low three times and I've fed her so much she is refusing to eat. I have to leave for the hospital and you are going to have to recheck her." I groggily get up and put her in my bed for the 5th time this week. It is easier to check her without having to get up. I also have an unfounded theory that if she were to get low I would sense it when she is next to me. Or, I would wake if she had a seizure. At least I tell myself this is the case. And, so tonight will be another night of restless sleep and blood sugar checks. This "call" every night is killing me...in residency the most frequent I was ever on call was q2 (every other night) and there was time to rest in between. My days have been packed with my own patients and my daughters who need me to care for them. I am counting down the hours tonight until the hubby is finally off these seven days and my "shift" is done.