An Unexpected Anniversary

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An Unexpected Anniversary

October 30, 2000 I am in the kitchen baking up Halloween treats for the kids Halloween parties at school. I loved these moments. The excitement, the energy, the creativity. Halloween was so much fun.

But…that day transitioned into a life I never thought I would ever entertain on October 31, 2000. That was the day I learned I would become the parent of a child with Type 1 diabetes.

On the morning of October 31st I got the kids ready for school. I packed the plastic containers with Halloween baked goods & saw them on the bus.

That afternoon as the kids unloaded off the bus & I walked them in the door asking how their day went & how their Halloween parties went, Kurtis say’s the words a parent does not want to hear.

“I didn’t eat any treats today because I felt sick to my tummy & drank & peed all day.”

I felt the energy drain out of my body. I didn’t even have to test him. I knew.

I asked Kurtis if Mommy could poke his finger like Mommy does to test her sugar. He flat out refused. I was on my own so did not have the help of another adult to convince him otherwise. Luckily I happen to still have Keto-Diastix in the bathroom. After I dipped & confirmed what I already knew with 4+ sugar & negative ketones, I placed the call to my GP’s office. He reassured me that based on the fact he had no ketones, take him out for Halloween as usual but don’t allow him to eat any treats loaded with sugar & bring him in first thing in the morning. At that point we would begin the transition to insulin with education to be a parent of a child with Type 1 & subsequently living with it.

Initially, the next 2 nights were the hardest. Halloween involved me trying to portray it was a normal night out with the kids trick or treating. With the exception that my 7 year old baby had just learned he had diabetes like his Mom. He would have to take needles & poke his fingers & have low blood sugars that didn’t look nice. As we walked up the road, from house to house, Kurtis would throw himself on the side of the road belly first & wail “I don’t want diabetes” or “I hate diabetes.”. I would leave him briefly then say as I tried not to cry “Okay Buddy, l know it sucks. Let’s go to the next house & trick or treat.” I honestly didn’t know how else to be. I knew he had to grieve even though it was about something he didn’t quite understand in it’s entirety but knew starting tomorrow he would begin to learn the essence of what living with diabetes was about. He only understood the external ‘bad’ things with diabetes….severe lows, needles & finger pokes. He didn’t yet understand the other side….how he’d feel being low, high, going to the Dr’s the next day to have blood drawn or the complexity of counting carbs, the demand it would have on his body & mind 24-7-365 & the ridicule he would receive at school for years to come.

The next day was emotionally distressing for both of us. I was the only parent present. His father refused to come home from out of town to support this critical event or his family.

While Cayla went to school, Kurtis & I made our way to the GP’s office. After a lot of coercion we finally tested Kurtis’ sugar by finger poke to determine his fasting sugar was 13.5 mmol/L. I blamed myself. I felt guilty. What have I done to my child?

The GP called the Paediatrician’s office & the hospital to arrange an appointment at the Adult Diabetes Clinic as there was no Paediatric clinic at that time.

We knew the Paediatrician from 6 years prior when Kurtis had an anaphylactic reaction to Benadryl & severely ill with chicken pox in which he almost died at the age of 1. We chatted briefly & said to me…”Mom, you have Type 1 & you’re a nurse, you know what to do. I’d rather not put him in the hospital so here’s the prescription for the insulin.” He gave me the dose to give him & sent me off to the hospital to learn how to carb count.

Once at the hospital I sat with the dietician as she taught me how to carb count. The entire visit Kurtis had marker in hand. Standing in front of a flip chart he wrote time & time again in big 7 year old letters “I HATE DIABETES” “I HATE DIABETES” “I HATE DIABETES”. It hurt so much to watch but I knew it was good for him to get it out. Me? I was on robot mode. Survival. Take it in. Learn it. Function. Sacrifice emotion for taking good care of my baby. Helping him through this time so that he accepted & transitioned into such a terrible diagnosis.

Once home, I explained to Cayla what had happened during that day. She was 9 & a mature 9. She grasped it fairly easily & knew she had to step back & let me care for Kurtis for a little while. Closing into supper time I explained to Kurtis that just like Mommy he will test his blood & take a needle. That’s where it didn’t go so well. Testing his sugar was a bit of challenge but doable. He tested at 32 mmol/L. I explained to him that he really needed his insulin to bring his sugar down as I didn’t want to have to take him to the hospital & have someone else do it. He didn’t care. He just didn’t want the needle.

After about an hour of trying to convince him, going into another room & having a little cry on my own, I called my Mom. Knowing she had been through worse then me with my diagnosis, I asked for her help. When Mom arrived my head was spinning, Kurtis was crying & Cayla was trying to keep the calm in a whirlwind of frenzy. I was also angry because his father wasn’t present in a time we all needed him.

In my mind I can still see Kurtis sitting on the kitchen chair on an angle from the table explaining to me in tears how he doesn’t want the needle & his rationale as to why he doesn’t need it. His eyes swollen with tears pleaded to me & it broke my heart. Thankfully my Mom had already been through the heartache of my diagnosis at age 5. She had raised a child with Type 1.

In her calm, she finally convinced Kurtis to let me inject in his arm.

After I got the kids settled to bed, I cried & cried. I felt it was my fault. I caused this.

How did I move forward? My Mom asked me a question that changed my attitude which helped me transition to a Mom accepting she has a child with Type 1 diabetes. “Would you have had him if you knew he would get Type 1?”

No regrets. It sucks but attitude & the choice to transition to a new life is essential to living life with Diabetes Beyond Borders. This year is another Diabeteversary. October 31, 2013 Kurtis has lived with Type 1 for 13 years. The transition continues.

Reaching Target and Realizations

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Reaching Target and Realizations

Further to my post yesterday, I met with my Diabetes Specialist today.

Albeit, I was still a little nervous. Not as much as yesterday. My “Too Funny” (see yesterdays Blog) moment helped alleviate the intensity. As I am sure you have experienced, the unknown can cause the mind to create various role plays. “If the Doctor asks this, I will say this.” “If he reacts this way to my answer, I will respond this way.”

After my “Too Funny” moment I asked myself, why am I aggressively role playing my visits?

The answers I came up with:

1. About 2 years ago I was asked by my Endocrinologist to take meds to lower my lipids & prophylactic kidney protecting meds. I reluctantly agreed although I did not see the reason. My ratio is incredible. My HDL is amazing. My kidneys are perfect. I decided about 8 months ago to stop my meds. I decided this based on 2 reasons:

First, my LDL (bad lipids) were still creeping up. Why should I keep taking a pill that was not doing it’s job?

Second, I met with my hormone specialist that deals with the bio identical hormones that I take. He convinced me that I didn’t need my lipid lowering agent. In his assessment of the medications that I took, he indicated that the lipid lowering agents would cause an increase in my bad lipids as opposed to decreasing them as they should have. He claims it was a plot by the pharmaceutical companies to amplify the symptoms so the pharmaceutical companies could sell more of the treatment. He claimed there was a better therapy that was natural & clinically worthy of taking…Astaxathanin.

I am all for ‘natural’ remedies, i.e.: therapy via food, herbs & vitamins. I believe in taking natures remedies before I will pop a pill made by the ‘powers that be’. I visit my local health food store frequently. I decided to become a one person clinical study. There is obviously no clinical significance but worthy of trying to see if it provided benefit to me. The last visit with my Endo 6 months ago showed it was going down, so I fibbed when he asked if I was compliant with my meds. I told him I was taking them off & on. I felt SO guilty! I wasn’t taking them at all but I respected him so much, I didn’t want to disappoint him. By habit, I am not a liar. As far as my diabetes goes, I am very concerned with the long term results and want to take the best course of action. With that being said, what were the implications of taking something that, up to this point, I had not seen any improvements but had a risk of side effects versus taking something that has no side effects but clinically provided signs of improvement.

2. I have always been guilty of too many low blood sugars. If I was to pick a high or low, I would pick a low. Not because it felt better, in no way did it feel better. I mean, come on, does a high or low blood sugar feel better or worse? They’re just different. I preferred them because I knew I didn’t risk complications. Frequent low blood sugars happen because I am so keen on running my sugars tight to target that I have increased the risk of lows. Also, until the past few years, I have been extremely active which have produced a lot of extra lows. I have noticed that as I get older, having low sugars is becoming very taxing. In the past 2 years my Diabetes Specialist has reinforced to me how hard these low sugars are on me (I’m feeling it!) & if they are in collaboration with a low A1C, they are not optimal. Also, I am alone throughout the night quite often. He reassured me it’s okay to run a little higher (above 6.2 – 6.4%) without the lows if it meant giving up the lows with the near normal tight control I was trying to achieve to feel good & stay safe through the night. Lows are not on purpose. They are caused because of being busy, being too active, taking too much insulin or not paying attention. In the past few years due to a lot of changes and stress in my life, I have been guilty of not paying as much attention to the fine details of my diabetes to achieve this goal.

3. In the past, a prominent Toronto Diabetes Specialist told me that due to the fact I have lived so long without complications with diabetes, I would never have any complications even if I ran higher than guidelines. I was told that my ‘success’ was purely genetic. I was excited by this but I didn’t decide to ‘screw it’ or decide that I was invincible. I’m still so afraid of complications. 38 years in, what guarantees do I have? I get nervous because I’m afraid one day he will assess my blood work, urinalysis, blood pressure or one of a number of tests and tell me I have a complication regardless of my choice for tight control.

The results of todays visit:

1. I am back on my lipid lowering agent based as my LDL has continued to increase. My one person clinical study failed.

2. I am a 10+ on a scale out of 10 on measuring stress. This will be for a few months more yet. The goal is to try to deal with it as best I can so I can manage my diabetes effectively. Cortisol & stress are a detriment to my well being with my general being, paired with living well with a chronic disease.

3. When I can afford it, I will wear a continuous glucose sensor to keep my blood sugars in check.

4. I will have fasting blood work done in 3 months to measure if the lipid lowering agents are working to decrease the LDL.

5. I will have random blood work done in 6 months & see my Endo again to see how my A1C is.

Today my A1C is 6.6. I am happy with today.

Waiting….nervously

I’m sitting in the waiting room at my Endo’s office. My Endo is awesome. BUT, I’m still nervous. Why? I have a few thoughts:

1. I can never achieve ‘normal’ even if my A1C is in target. There is always something else that raises a flag & is in need of discussion. I feel like a dog chasing it’s tail.

2. I download my CareLink reports from my Medtronic insulin pump & I think I’ve been rocking it up until I review them. More highs then I thought (27% of my total recorded sugars for the past 3 weeks). But no major highs. Still, they’re higher then I expect of myself. I have less lows though (only 3%!!). Now I’m worried my A1C will be higher then I thought.

3. Although my lipids are awesome for the most part, my LDL is higher then CDA guidelines recommend. I’ve been experimenting with trying to get it down on my own. I feel guilty. My Endo wants me to take meds to help bring it down. If it hasn’t gone down, today will be the day I will commit to going on them. I don’t want to. That’s another why I have to figure out so I can be diligent in my efforts with this.

I try to remind myself that I’m very committed in my day to day management. For the most part I am conscientious in all I do. I don’t ignore or neglect my diabetes. I live with diabetes. I am human. Each day I am accepting of this but each time I see the Specialist I sway from that confidence.

What is it about your diabetes that makes you anxious & how do you deal with it?