Yesterday and Today

In 1975, I was diagnosed with Type 1 diabetes after months of my Mom telling our family doctor something was really wrong.

He insisted it was a cold & I would recover in time.

Finally, after several months of symptoms such as wetting the bed at night (after having been toilet trained for years), having to pee before we got to the end of the driveway for a walk, weight loss (my Mom says my ribs stuck out, she thought when she picked me up she would break them), extreme thirst & sitting on the toilet crying because it burned so bad when I peed, my Mom felt relieved as she thought she knew what was wrong…. I had a bladder infection.

After the refusal of our family Doctor to see me anymore and upon the firm insistence of my parents, I was finally seen by another Doctor. When they dipped my urine for an infection, instead, they found large amounts of ketones. I was rushed to the hospital. I was also diagnosed with Whooping Cough. I was hospitalized for 10 days. Back then my Mom couldn’t stay with me overnight. I still remember that stay. It was very traumatic. I missed my Mom so much. I hated when she left each night.

I was just weeks shy of my 6th Birthday & weighed a mere 31 lbs (14 kg). I was started on 1 injection in the morning of Lente & Toronto insulin. Both insulins were unpredictable. The needle length went into my muscle instead of my subcutaneous tissue making the unpredictability worse, but there was no one then who was aware that a 13mm needle was too long for anyone, big or small. My Mom tested my sugars by urine through a dipstick. The goal was to have a dipstick with Trace sugar & no ketones. I did not receive my first glucose meter until I was 11 based on the cost which was about $200.

Based on my diagnosis, experiences, changes & the management I have experienced throughout the years, I am thankful for so many things:

1. My parents were told I would never have children. Although at the time I announced my pregnancies there was a lot of worry, I successfully have had two pregnancies (although very challenging) & two beautiful children.

2. I am blessed to have no complications after 37 years, which is rare.

3. I am living in a time where the technology advances in managing diabetes are becoming available faster then we can acquire them but provides the opportunity to get access to & manage it better.

4. We seem to be closer to a technology that allows for less management on our part & the reliance on bio feedback mechanisms that will reliably do most of the work for us.

5. Pharmaceutical companies that create, manufacture & produce insulin, such as Novo Nordisk Inc., are creating programs which offer easier access to children living with Type 1 diabetes living in developing countries that otherwise would not have it and risk dying due to affordability & access. Much still needs to be done about this (one of my passions) but the movement by corporate has started to fill this huge gap.

6. The choices and dissemination of media communication and access is the forum for supporting curiosity, access, acquisition of knowledge and action with regards to living with diabetes. This is essential to empower people living with such a complex disease.

7. I have been blessed to be part of a network with many gifts, experiences & an education that enables me to practically & clinically share with each of you, no matter where you live, what is needed to live with Diabetes Beyond Borders.

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.