"Everyone had their thing"

During spring break Blaine, Aislin and I met up with one of Blaine’s friends, PJ, and his mom. Shortly after Blaine was discharged from the hospital and back at school PJ’s mom reached out to me. I didn’t, and still to a degree, have the energy to tell everyone I know about how diabetes is now part of our life. I haven’t made a Facebook announcement, I’m not on twitter or instagram, and I usually only like to talk about positive things with others. My journaling and hit or miss blogging is where I get my negativity out. I don’t feel that I’m completely in a good place to be positive about diabetes yet, so I’d prefer not to talk about it. With my closest friends, I will tell them exactly how I feel, but with most people I just prefer to steer the conversation elsewhere.

What I didn’t expect when PJ’s mom, Maria, left me a voicemail, was her telling me that she also has Type 1 diabetes. Whoa. I realized once she left the message that all those times she leaned over to check what I thought was her beeper, she was checking her pump. Maria is a school counselor at a high school in our county. I assumed that for whatever reason, she wore a beeper for emergencies, although I knew she had a cell phone. I just thought with county budgeting, maybe they still used beepers. In her message she told me that she knew that I’d be busy, but to call her back at my convenience. I knew it would be a while before I was ready to talk so I sent her a text and thanked her for calling and told her I’d get in touch soon.

A month later, I felt like I could talk. I knew I’d have a ton of questions, but at the same time I really didn’t want to be forward or nosey, but I knew if anyone would understand and have answers to some of my questions, it would be her. I asked if they wanted to meet at a local pizza place for lunch during spring break, being that we both had the luxury of a week off. That lunch was probably one of the most important lunches I’ve ever had. During our two hour lunch Maria normalized the process for me. She told me “everyone has their thing”. For her son, it was learning to cope with ADHD. For her it is coping with her diabetes. She stays incredibly fit, she eats healthy, she listens to her body and takes care of herself. She manages a career and takes care of her son, who stays busy with travel ball and other commitments.

She told me when PJ found out that Blaine had diabetes, he became very sad for him. Because he knew what it meant. He has spent his whole life watching his mother check her blood, manage her pump and take care of herself. He was so sad that one of his friends now had to do the same.

I can’t remember everything we discussed. I know we talked about numbers, and pumps. We talked about exercise and diet, I told her that we had our first eye doctor appointment for a retina scan, since blindness is now another risk factor.

I just remember that being with her was such a comfort for me. She was entering her freshman year of college when she was diagnosed. She still finished college, and graduate school and had a child. Yes, diabetes sucks. It is an inconvenience, but it is something that can be managed.

Everyone has their thing. Each time I see Blaine touching his finger tips to find the best spot to prick, or patting at his arms, legs or stomach to find the least sore spot for his next injection, I honestly want to sit down and cry. Or go into a rage and destroy everything around me. Or scream and beg a surgeon to remove my pancreas and give it to him. Just give me his pancreas. Let it be me! Let me do the shots and finger pricks! He is just a child. A sweet little boy that never deserved any of this. But, then I hear Maria’s voice, telling me “everyone has their thing.” And I know that it is true. He will be fine. He will cope with this, and so will I. After all, it’s our only option. Seeing her and knowing that she copes every day gives me hope.

Thank you insurance for keeping us informed of the risks

I still have moments where it hits me: my son has diabetes, he will have it for the rest of his life. It is tiring having to account for every carb that goes into his body, to make sure the calculations are right, to make sure he doesn’t have too much insulin and go low, resulting in coma or death, or too high, resulting in loss of circulation, blindness or death, as the information from our insurance noted in a recent letter.  It is even more overwhelming when I think of the thought that one day he will have to handle these things on his own.

This spring break was different from all previous breaks. I didn’t plan activities for each day, but unlike winter break, this time it didn’t stress me out. My plan for the break:  breath and experience each moment. I spent time with the kids, I enjoyed the moments for what they were. I read three books. I sat in the basement with Blaine while he played xbox. I helped clean the basement with Aislin so that she could play school. I hosted a few play-dates with their friends. I accomplished a few things such as cleaning out drawers and closets. I also spent nearly two hours on the phone with the insurance company. In a kind letter, stating the many risks of Blaine’s condition, if not handled properly, the insurance company informed us we could fill his prescriptions at a local pharmacy three times a year, after that all items must be mail ordered.  He needs supplies monthly, and will for the rest of his life.

I had looked at the paperwork for a week before garnering up the energy to tackle it. I decided just to call a live person, rather than mail in or complete the forms on line. An hour later, I think I got it all correct.

 

The insurance company will send the requests to the endocrinologist for authorization, then it will go to a pharmacist and then the items will be mailed to our house, overnight. Thirty days before we run out, a letter will be sent and I will request the supplies be sent again, in a three-month supply. We need lancets which are the tiny needles he uses to prick his finger 4-10 times a day, smart-check strips for testing his blood 4-10 times a day, insulin pens and needles for the insulin shots 4-6 times a day, and then the long acting insulin which he takes nightly, plus syringes that he needs nightly for these injections.  He will need these supplies the rest of his life.  Once he moves out for college he will be responsible for ordering these supplies (unless he still wants my help, which I would gladly do for him). This is our new normal. I am beginning to accept it, but I still miss our old normal.

I no longer feel as though I’m going to cry when I see Brent or Blaine count out his mini-wheats in the morning. It is second nature now for me to grab a measuring cup and fill it will pasta or rice for him, and I am becoming accustomed to Blaine bringing a measuring cup to the table, watching him pour his syrup into it and then pouring it over his waffles.  A few weeks ago these things made me want to cry.

My friend Jackie stopped by my office yesterday. She was completing research for her PhD at the elementary school where I’m working one day a week. We chatted for a while, with her asking about Blaine. I told her that I wish I had known to enjoy my old normal more. She assured me that I did. That I was grateful. I feel that I have always been grateful for my life. I know each day is a gift, but still I wish I would have enjoyed it more. I wish I would have known to enjoy the freedom of not needing prescriptions every month, the freedom of not second guessing insulin calculations and dosages, the freedom of not worrying about very real complications that could happen.

My original coping phrase has been resurfacing lately:  It is what it is. It will be what we make of it.

"I'm jealous of that"

The kids and I headed into Kroger to grab a few items for dinner. As is customary, they both requested something at the checkout. We were all in great moods heading into spring break, so I said sure. Aislin grabbed a pack of Mentos (which she still refers to as Men-toasts) and Blaine bought some gum that had 1 carb per piece. We were in the car driving home when Blaine requested a men-toast from Aislin. He had eaten 2 pieces before letting me know that the carb count was not listed on the package. I can’t remember what Aislin said, but I do remember Blaine’s reply to her.

He told Aislin, “That’s because your pancreas works. Mine doesn’t, and I’m jealous of that.”

I hate it for him, so much so that I still want to scream, and jump up and down, and yell that it’s not fair!

But, screaming will not help anything. So we just keep going.

Chocolate bunnies and tortillas for breakfast?

Its 9:50 am and has already been a busy morning, starting with a 7:10 am meeting. The speech pathologist has stopped by my office to discuss a case. My cell phone rings. I now keep it with me at all times and answer immediately, no matter what I have going on. It’s the school nurse. She is asking if Blaine had insulin this morning and how many carbs he had for breakfast. We now have a nice folder that I put together with a new log and a typed list of his frequent carbs for breakfast, lunch, dinner and snacks. The problem is we have to write in the notebook in order for the communication process to work effectively.

I left the house at 6:50 am this morning. It was not a good sign that Brent and the kids were still sleeping. But to be fair, Brent had a long night.  Last Thursday I called the endocrinologist to let them know we would be out of test strips for his glucose monitor sooner than they had anticipated. I had tried calling in a refill at CVS. When I spoke with the tech at CVS they indicated we had to have a new script for another refill.

So, I call and leave a message on Thursday with his new pediatric endocrinologists office. I don’t hear back, I call again on Good Friday and leave another message. Someone calls me at the end of the day, but unfortunately all the doctors have gone home and there is no one that can refill it. Seriously?! They tell me they’ll leave a message for the doctor.

Monday, I hear nothing. 

Yesterday, Tuesday, I called CVS to see if they had received the new authorization. They had not. We have all of five test strips left.

We must know his BG level. It’s not just a fun fact to know how he’s doing throughout the day. It’s how we keep him alive. I call the endocrinologist immediately and go through the emergency line. I very clearly explain the fact that I’ve now called their office twice and nobody has addressed the issue I’m having. They promise to get it taken care of immediately. By 5 pm a nurse calls to let me know the new script is being faxed over.

As Brent is on his way home a few hours later, I relay to him the drama of getting new test strips. He asks me if they are ready and tells me he’ll swing through the drive thru to pick them up on his way home. I tell him I need to call CVS to make sure they’ve filled it. I call. They’ve been slammed; they tell me it will be ready in 30 minutes. Brent decides to get gas and then get some more juice boxes from Kroger. He goes back to CVS, it’s not ready. He waits, and waits. And then is told they are out. No test strips available. They help by sending the script down the road to Walgreens. He waits again. There is an issue with insurance. Finally, after over an hour of inconvenience, not to count my time on the phone prior to the endocrinologist, he has the test strips. By the time he gets home it’s late and I’ve already had my now nightly glass of wine.

The nurse is asking me what Blaine ate for breakfast this morning, I told her I was gone before they got up and that I had no idea. She asks Blaine what he has eaten. With the SLP standing nearby to hear our conversation, he states that he consumed, for breakfast, a chocolate bunny and a wheat tortilla.

Great.

I tell her to ask if he ate ¼ the chocolate bunny. Yes, he indicated he had eaten ¼ the bunny. I tell her that ¼ the bunny was 20 grams and the tortilla was 24 g. She decides she will give him a correcting dose for his BG level and some to cover his breakfast. She asks what I think about giving him 3 units. I still don’t know.  But, I do know that I trust her judgment. It was the right call. According to his log, which she writes in each day, his numbers looked good the rest of the day. I’m still shaking my head that he had a chocolate bunny and wheat tortilla for breakfast.

We’ve quit track. He’s not felt well enough the past several weeks to participate so we withdrew this season... I just want him to feel better and be active again.  He’s never been one to love sports. I don’t want him to use his diabetes as an excuse for not participating anymore. I need him to be active, although he’s told me that since his diagnosis he just doesn’t feel like doing anything other than xbox.

Baby steps for now.