Friday, 19 May 2017

More About The Person...Me!

Good Morning or Good afternoon depending on your time zone. I have found these posts to be thought provoking all week. Today it's all fun! Who doesn't love to talk about themselves?

I work full time not because I have to, thankfully, but because I love the work I do. I am a lactation consultant. Who doesn't love babies, right? 

In my spare time, I walk, and make cards. Yup. I'm a cardmaker. Greeting cards. I never knew I had talent but I do. I don't sell my cards. I just do it for fun and relaxation. Quite frankly, the market is saturated with people trying to sell their cards. I don't need another job. Lol. 




I am also an amateur photographer. I love taking photos especially of birds. The swallows were freaking out btw.

https://instagram.com/p/BIbTq0Fjw4q/



And sometimes I can intersect the two. 


That just gives you a little peak at who I am. 

Have a great weekend!!!

Hugs.

Thursday, 18 May 2017

My Diabetic Burn Out

Diabetic mental health. That is something new for me to reflect on.

Here goes. I was diagnosed with Type 2 in 2005. I burnt out 4 years ago from my diabetes. I stopped watching my carbs. I stopped testing. I gained about 25-30 lbs. No one in my family was diabetic. Not my parents or their parents. Not my brothers. Not my husband or my kids. Just me. I felt very alone. And I felt very helpless.

Diabetes was starting to affect me in other ways now. I was unhappy. I didn't want to be diabetic anymore. It was unfair. I cried. I bitched. I worried. I didn't like how I looked. I only sporadically took my meds.

It took me about a year to figure out I couldn't continue to ignore it anymore. I knew my numbers sucked. I could see them in black and white. All the while my elderly parents ran into health issues and I had to forget about myself. I didn't have a choice. Oh I acknowledged my diabetes was a mess but the situation with my parents wasn't going to resolve quickly. I was not only worried about me, I was worried about them. I made several attempts to get back on track but to no avail.

The issues with my parents took some time to resolve but I couldn't use that as an excuse anymore. I had to deal with my health. And I am. I did a lot of reading about diabetes burnout. That helped. I got the medical end of things on track. I only have 11 lbs to lose to make my goal weight. I like the way I look. I feel good about me. I'm not denying I have diabetes anymore. I experimented with twitter DOC groups. That didn't go as well as I hoped so I took a break from it. I'll likely go back when I'm ready. I feel empowered again.

Now that I know about diabetes burnout, I will do my best to avoid it.

I'm not alone.

😊

Wednesday, 17 May 2017

When Others Are Insensitive

Sometimes people say the wrong thing. And it leaves you feeling...bad.

How each of us deals with it depends on our personality, our upbringing or simply the emotion at the time. It could involve anger, tears, shock, swearing, disappointment, you name it.

When it's the professionals who say the wrong thing, the comments seem somehow, worse.
They're supposed to know better, right? Right.
They're supposed to be sensitive. Yes.
They're supposed to understand what it's like to live with diabetes. Well, you hope.

I'd love to accept that they're having an off day but I'm really not that generous. It's hard to have a glass half full when you felt your glass was empty in the first place.

When a professional catches me off guard I react. I will say nothing. That's my reaction. For those who know me well, they would never believe that. The anger, the tears, and yes, the swearing comes later when I am safely with my loved ones who allow me my moment. Or two. Or more.

There is one situation that come to mind for me.

I went to see the RN CDE about my diabetes. There had been many warnings in the news about a med I was on. There were class action suits in both the USA and Canada. Well of course, that concerned me. I told her what I had heard/read.

Her response: No. That's it. No.

I asked another question and again I got no. Oh, AND she was doubling that med because my blood values were not where she wanted them to be. There was no discussion. There was no doctor consulted.

Well, hon. I don't think so.

Now if she were a puppet and I could speak for her, here's how the interaction would have gone.

I tell her about the class action suit.
"I hadn't heard about that. Tell me what the suit states."
I tell her.
"At present there's no evidence to support what the suit is claiming. However let me get in touch with Dr Endocrinologist and get back to you. Do you feel ok staying on the drug until I get a hold of the Dr?"
Yes. When will you call me back?
"He's away today but I will call him tomorrow and ask him what he is aware of to see if he can speak to your concern."
Ok. That sounds great. I look forward to your call.

Well obviously it didn't go that way. I left with the Rx she gave me. The next day I called back to the Education Centre and told them to close my file, I wouldn't be back.

That decision felt right and I never looked back. Until now. Because of the blog. Hahahahaha!

Tuesday, 16 May 2017

Diabetes Care, It Is Not Cheap

It's amazing what you take for granted. I've had my eyes opened over the last couple of years when I realize just what I don't have to pay for. That's right. What I DON'T have to pay for.

I re-order my diabetic medication and supplies every 3 months. I deal with a big pharmacy chain. Each time I complain (actually I b**ch) about the $4.50 I have to pay beyond the actual costs that are paid out by the benefits companies. I'm referring to the pharmacy markups. Our benefits companies, both mine and my husband's, have a set amount they will co-pay for each item. I believe it's pretty standard throughout the industry. The pharmacy then charges over that. In another words, more profit beyond the huge profit they already make along with the dispensing fee (about $14) on each prescription item. 

For example:
Actual cost for pills: $3
Pharmacy dispensing fee on each item: $14
Overcharge cost (on that item only): $0.75
Total cost now: $27.75

Now that $0.75 doesn't sound like much but consider that they are charging that amount or more on each item in my bag, as well as the dispensing fee on each item in my bag, and then on every person that gets that same drug. Blows my mind but I grudgingly pay the $4.50.

I need to state for the record, what benefits we get in my case are negotiated by our union contracts. Oh, the benefits companies make us jump through some hoops but for the most part, they pay for what we need.

In Ontario, for those who need assistance to live, there is the Ontario Drug Benefit, that we as a province help pay for. I am so very proud that we have a system that assists those who can't, or don't have the skill to, help themselves. I took a look at what ODB covers. The only real difference is they pay for more generics where our benefits will sometimes pay for name brands. Should medication and supplies require costs beyond what the person or family can afford, then there is the ability to apply to the Trillium Foundation for more support. The family still might have to fork out $300 or more a year. Still...that's pretty good.

What this means is that the more fortunate, me, and the less fortunate have it pretty good. The people who don't have it so great are those in lower paying jobs who are likely working full time to make ends meet and have no benefits. They can also apply to the Trillium Foundation to help with costs. It breaks my heart to know there are diabetics who cannot afford their supplies. One solution: don't test, can't afford the strips. Another solution: only use half the insulin needed so it lasts longer. Add to that the cost to buy healthy foods...it costs a bundle to eat healthy!! Spaghetti and sauce are cheap to buy. So are potato chips and other junk foods. A buck and a half for a bag of chips or five dollars for apples...

Let's talk accessibility. We have a system of universal health care so we don't pay outright for Drs visits or hospitalizations. That is covered through our tax base. And we have a high tax base. We don't have restrictions on which Drs we can see in or out of the area. (The discussion for another day is what is broken in that system that needs to be fixed.) So again, we have it pretty damn good overall.

But here is another issue for diabetics. You are newly diagnosed. You are referred to what is referred to as a Diabetic Education Centre. You have some, very little, one on one time or care with the CDEs that are RNs or RDs. Everything is groups. When I was diagnosed I was 46 yrs old. I was the youngest person by 20+ yrs in the group session. Very little common ground there. No individualized care. I'm now 58 yrs old and only now do I have access to an endocrinologist mainly because I embraced my health early on but also because I wasn't on insulin. There was a pecking order for who had priority and I wasn't it. I wasn't, and fortunately still am not, on insulin. So the need for an endo was not considered to be necessary. I still have access though to a lot of solid information and research because I work within the health care system. So on the whole I could get what I needed.

Being a person with a decent income, I could afford extras like satellite radio. As I'd commute to and from work, I'd tune in to Doctor Radio. I have learned so much. But the show that blows me out of the water is Health Care Connect. This is where I hear the challenges people face with access to health care in the USA. With benefits companies that have made the system so complicated that the average person can't maneuver through it. I listened to a woman describe how she couldn't afford her diabetes medications because she didn't have $400 every 3 months to pay out for it. It was insurmountable for her. This is not the first time I've heard these painful stories. I can't imagine...

As I whine about what I don't get, I am humbled by what I do get. And a saying always come to mind

"There but by the grace of God go I."

Monday, 15 May 2017

Living With Diabetic 'Speed Bumps'

Diabetic speed bumps? Hmmm. You mean challenges? Yes, challenges. Let's talk. 

The word 'challenge' sets my mind spinning. Since I am not a competitive person by nature, even positive challenges hold a negative connotation for me. I prefer to call challenges 'speed bumps'. Why? Because I believe language can set the tone and therefore I have changed to a more positive one. For me, trying to stay positive in light of a very demanding chronic health concern can be difficult.

So what then are speed bumps?

Well, here's my description:
They are something in our way. 
They slow us down. 
They may require care to get over, but they are never so big that we can't get over them.
They are not walls. 
We can usually see them coming but sometimes we miss them until we come upon them. 
Other people are going over them at the same time. 

As diabetics you know we hit speed bumps all the time. They can slow us down, get in our way, may required time and changes to our care to get over or push through, sometimes we see the changes coming and sometimes we are blindsided, but mostly, others are going through this too and very often at the same time.

My biggest speed bump lately? Professionals 'pushing' insulin as the answer to all. Now. There is nothing wrong with insulin. It is a LIFE SAVING medication. But like many other things in life, timing is everything. When I began hearing the message that insulin was the answer to all, I felt it was time to get a second and third opinion. The second one said no it's not time; the third one, the endocrinologist, agreed. It still was not time. I had proven that I can make the lifestyle changes necessary to best support my wish, my decision to avoid insulin if it wasn't time. Even if that meant I had a job to do, work on my lifestyle. I'm one of the lucky ones. I have the power and ability to make and sustain those changes. I was not going to be disempowered.

I had to slow the professionals down because the insulin issue got in my way. I had to ensure that I could care for myself long term but I knew, even though I didn't see it the insulin conversation coming, I could push through this. I also knew that others felt the same way I did: no insulin before my time. Not no insulin. Just no insulin before my time.

Speed bumps. The best way to view any challenge, flip it into a positive if at all possible.

Make it a speed bump. Your diabetes speed bump.

My Diabetes Boober Blooper

I have had a couple of diabetes bloopers over the years as I'm sure many of us have. Until recently, I have only been on oral meds. But a change became necessary and I needed to start giving myself Trulicity injections once a week. My endocrinologist said the injections could only be in the abdomen. My blooper? I couldn't see past by my boobs to give myself the injection in the abdomen. My girls were just not where they used to be! OMG. LMBO!!

Thursday, 11 May 2017

Laughing At Myself

Sometimes you just have to laugh at yourself. And laugh I did. My endocrinologist put me on a new drug, trulicity, an injectable non-insulin medication. It is a med that you inject into the abdomen once a week. Since I live in a smaller community, I knew it would take a couple days for the pharmacy to order it in. Today is Monday. I wasn't planning to start the injections until Sunday. In the meantime, I wanted to review how to inject the drug and see whatever helpful info I could find. I checked out the internet...um...not my smartest move. Let me elaborate.

I went first to the drug company website. A lot of good info. One thing that caught my attention was the nausea. Their website said 8-30% of people have this symptom. Hmmm. Well that means 70% do not have nausea. I decided I'd be in that 70%. I'm not going to have the nausea.

Then I made a huge mistake googling the med. I read so many stories, all of which talked about the horrible nausea, vomiting, losing weight because the nausea was so bad folks couldn't eat. Oh boy. I should never have googled it.

The week moved forward, the med came in and now it's Sunday. It was on my mind all day. I went for my daily walk and ended up at Shoppers Drug Mart. I made my plan to deal with the nausea on that walk. I bought fast acting Gravol. I bought long acting Gravol. I will give myself the first injection at 10:30 pm and go to bed. I'll sleep through the nausea. I set both kinds of Gravol at the bedside, along with water and a throw up bowl. I checked my work schedule to make sure that if I was too nauseated to go into work, then I could manage the sick time. My husband was aware of the plan. He was a bit worried as I was. Ten thirty rolled around, I gave my first injection. Success. Only a little irritation at the injection site. I went to bed. I read for a bit. Turned out the light. I tried but I couldn't get to sleep which sometimes happens on Sunday nights as I think about my coming work week.

At 2 am I was still awake so I decided to get up and read some more. By 3 am I realized, I'm not nauseous. I'm not going to get nauseous. I am, however, going to be very tired since I get up at 6 am for work.

So why am I laughing at myself? I got sucked into the stories on the internet. I have $16 worth of Gravol that I will never use. And I didn't get any time off work.

For anyone getting ready to start on trulicity, don't set yourself up for problems. Seventy percent of the people who use it, DON'T get nausea. You will be in that 70% too. And for those who are in the 30%, I am sorry. I hope it gets better for you.

Wednesday, 10 May 2017

Meeting The New Doctors, Part Two

Sometimes you need a specialist. Someone who knows diabetes inside and out. When my family doctor made the referral, I was pretty sure he would let the endocrinologist know my goal: no insulin before my time. I also am realistic enough to know that the endocrinologist's goal may be, or may need to be, different than mine. I went into the appointment very nervous that our goals may be different. I wasn't sure how I was going to handle it if he said it was time for insulin.

I did my homework prior to this appointment. I read up on the oral meds. I also read up on some of the other medication options like injectable non-insulin drugs. As much as I was hoping this wasn't going to be the path taken, I felt I needed to know more about these drugs. So I read. And I read some more. I got very comfortable with the idea...just in case. I was glad I did. There were some significant warnings on the one injectable. Thyroid cancer. The warnings came from the drug company that makes the drug. I went to the Health Canada website. I came away feeling the risk was not as great as I had thought. I would ask the endocrinologist though.

The specialist was a quiet man. He spent time getting my history. He seemed genuinely surprised that I was able to deal with my diabetes for 8 yrs by diet and exercise. Believe me, I was proud to tell him.

The plan was now to be revealed. It was interesting how he worded this. He called it his plan. I didn't feel left out of the decision though. Not at all. I think it's because of his manner. Quiet. He sat back in his chair relaxed. There was no indication he was in a hurry to get me out of the office.

The plan started with separating the metformin from januvia and discontinuing the januvia. That combo just wasn't bringing my sugars down. So he added jardiance instead and trulicity, the injectable. Time for my questions. I didn't really have any questions about the metformin or jardiance. It was the trulicity and thyroid cancer that I needed his expertise on. The doctor explained that this was a very rare cancer. It was not the 'usual' thyroid cancer that is so common. This cancer has a distinct family history attached to it. I have no such history in my family. He explained the science behind it which went further than what I read on the Health Canada website. I felt pretty good about this drug then. He also explained that although it hadn't be proven yet, it would not be very long before this drug will show that it is cardiac protective like victoza. Trulicity is also a once a week injectable versus victoza that is a daily injection. He taught me how to give the injection into my abdomen. Seems pretty simple. Sold.

The doctor also gave me the time to ask the other questions I had. I had already changed the amount of carb I was eating at meals and snacks. The RD-CDEs all chant 45-60 gms of carb at meals. This is too much for me. My blood sugars do not come down with that much carb! He smiled when I asked him if he could support it, he mentioned that he knows what the RDs would say but yes he supported this if it worked for me. Next I asked him about the ACEi that the cardiologist prescribed that I hadn't started. It's a blood pressure med. I know it protects the kidneys from diabetes. I had my BP checked once a week by a nurse friend since I saw the cardiologist a month ago. I really didn't see the need for a BP med since my BPs were either normal or low. The endocrinologist hesitated, thinking it through, then said he'd like me to hold off taking that med because the new diabetic meds can lower my BP even further. He told me to check my BP once a week and we can talk about it again in 3 months when I come back. I can really appreciate that he did not want to contradict other professionals, that's what the hesitation was. His respect for me and other members of my health team was such a relief. He obviously believes in individualized care. In my opinion, he's the quarterback. He's the one running the show. And I am very glad he is.

You have no idea how relieved I felt leaving that appointment.

Tuesday, 9 May 2017

Meeting The New Doctors, Part One

I have been referred. It was time to meet the new doctors. I was pretty excited. The cardiologist was first. My family doctor gave me a gentle warning that this doc doesn't pull any punches. He tells it like it is. Ok. I'm ready.

Before I go on, I want to be clear. It will sound like the whole visit went south. It didn't. Not at all. This doctor's manner is very different than what I was used to. Keep in mind, I have really only had, or needed, one doctor to this point, he even delivered my kids. I have been very lucky. I'll explain why I have chosen to stay on this cardiologist's roster, even though the question of 'why?' might run through one's mind.

First impression, he's impatient. I can live with that. He asks a question. Don't think about it, just answer it. Well, I guess you're going to have to wait till I get the words out. For me to tell my, albeit, short story. Wow. He's got a lot of questions to ask me--cardiac family history, my cardiac history to date--very lucky on both fronts, there's not much to tell. 

Now my diabetes history, he's got a lot of advice about that...well, I guess he's supposed to know all of this. Aw, he's diabetic too. In terms of my visit, that's a good thing. No. That's a great thing. He gets it. Even told me what my endocrinologist will do, what meds he will prescribe etc. LOL. I'll hold that part of his advice aside. How could you possibly know what my endo will do when I haven't even met him yet?? The endo I will be seeing is his endo as well. OMG! I really don't know what to think. An all seeing, all knowing cardiologist.

He asked me about stress. I briefly told him about the journey with my parents. He had the same journey with his mom. On a personal level, he shared how things will get better for my parents and what the path from here will look like. Wow, didn't see that coming. I really appreciated his thoughts though. 

Time for the treadmill. Paper gown. A million leads. BP 105/60. Nine minutes on treadmill. Yay! No issues. 

Now, his plan. Am I included? It doesn't appear so...I'll explain in a minute. 

The medication review and changes: 
1. Add Aspirin 81 mg, ok, standard practice, cardiac protective
2. Cholesterol med, increase the dose, double what I'm currently taking to get me into the diabetic range...I have a concern, tells me outright he doesn't believe the concern I had with a higher dose of a different statin med--could it happen again is my question, tried to explain my concern, clearly doesn't want to hear it, (here we go again, I'm not only not part of the plan, he doesn't believe me!), added a different cholesterol med instead, I'm still trying to explain, not hearing me. I stop talking. 
3. Add an ACEi. I didn't ask what this med was because I was still trying to process the cholesterol discussion. (More about this later.)

Asked him if I had questions do I go back to family doctor to ask or call him...wrong question to ask..."your family doctor sent you to me because he didn't know what to do"...I almost laughed out loud...no ego there... 

I left feeling uneasy. Sitting in the parking lot, I ruminate. I didn't mind the addition of the aspirin but the cholesterol was a different story. I hadn't been heard. Wait. No. That's wrong. He did hear me. Rather than double the med, me returning in 3 months and tell him I have issues, he just gave me a second med that was not a statin and would do the same job. Well, isn't he a smartie pants. 

I found out after I got home what an ACEi was. A blood pressure med. My BPs have been low since my parents are safe. Hmmm, that one will require the input of both the family doctor and the endocrinologist before I start that one. 

I'll be seeing my new cardiologist again in a year. 

Monday, 8 May 2017

But First, The Specialized Service Appointments--Diabetes

My diabetes has always been managed by myself primarily, and my family doctor. I had control by diet and exercise for the first 8 years of my journey. I had a few visits here and there over the years to some of the specialty services available for diabetes. I was open to it at first and I gained some good information. They had a plan. And back then, we moved forward together. I would drop in and out of the services as I needed. This was ok within the system and the accepted norm. They were too busy with the newly diagnosed Type 2 folks to keep me on board unnecessarily. I was good with that.

Now, my diabetes was changing. I was older too. I no longer had the control of my blood sugars I'd had in past. The last four years were difficult ones. In part because I rebelled like a teenager, I didn't want to be diabetic anymore. My parents needed support and I didn't have time for diabetes. My diabetes needed attention. As life settled down, and I grew up again, I knew I had to take care of myself. It was time to get back to it.

Off I went to see my family doctor. We talked about going back to the specialized services but I wasn't interested. My last couple of visits with them left me feeling pretty uneasy. No. Not uneasy. Angry. The specialized service professionals had a plan for me. Problem was, it was their plan. For the first time in my life, I was excluded from my own health care plan. It wasn't being done with me, it was being done to me. They decided a number of things that I initially went along with. They were the experts. It became very clear very quickly, we were not on the same path. They decided I was going on insulin. My doctor did not feel it was time for that. I did not feel it was time for that. I was being slotted into a protocol. Being fairly well educated, I had read the Canadian Diabetes Guidelines. I read and re-read about the importance of individualized care with diabetes. How each person is different, one size does not fit all. I had tried over the last 4 years, three different diabetes drugs. I was well aware there was a much longer list of drugs available. So why were we jumping to insulin? To make it quick and easy for the professionals? There was no individualized care here. And I wasn't about to accept that. 

Now, I must state in all fairness, I'm not against insulin. I'm against insulin before my time. I repeat. I'm against insulin BEFORE my time. I recognize that diabetes is progressive. I recognize that there may be a need for insulin eventually. But I felt like we hadn't tried hard enough to find a drug that worked for me along with my lifestyle changes. I had already gained back about 25 lbs with my rebellion. I used to weigh close to 230 lbs. I got down around 160. Now I was back up to 180-ish. Insulin is noted for weight gain. Like I needed more of that. I clearly didn't need a bigger weight obstacle than I currently had. I just couldn't get my head around what seemed to me to be this massive jump to insulin. And there was to be no discussion. They were in control.And I'd lost all of it.

But not for long.

I went back to the family doctor and had the conversation. Turns out, it wasn't the first time he'd heard this. From his chair though, it was the starting point for care as endocrinologists are difficult to get access to. They are swamped with people in much greater need than I had been for the last 12 years. I understand the system. I still was not going to forced into a health care plan that didn't include me. My doctor agreed.

My doctor made two referrals, one to an endocrinologist and another to a cardiologist. Cardiologist? Yes. When we talk about diabetes, we need to talk about its affect on the heart. Ok. I'm game.

Time to move forward with my new supports.

Sunday, 7 May 2017

My Diabetes Was A Mess

My diabetes was a mess. This seems like the most appropriate place to start this post. When life circumstances take over, it's really hard to maintain control and believe me, at that time, I had no control. Over many things.

I continued to be heart sick over the situation with my dad's health. He needed to be safe. Mom was not coping well. I was really afraid of losing her too, terrified. It was a time I could not have imagined. Dad and mom live 2 and a half hours away from me. Even further from either of my brothers. Dad was sent to Emerg a few times by ambulance and the doctors could never seem to find out what was wrong. Oh, they were trying, but whatever was going on, hadn't surfaced. They were trying to determine a diagnosis on top of the diagnosis we already knew. I found out in hindsight that this is not uncommon. Dealing medically with the elderly is not as simple as you might think. The elderly are very complex. In my mind, as complex as babies. I had no idea.

My brothers and I talked, and emailed, and emailed some more, and texted, multiple times a day. I cannot say again how truly grateful I felt and still feel to have the two brothers I do. So many times I'd heard how crisis can tear a family apart. It did not for us. It drew us together. Strengthened us. In crisis, I really saw how we cope. That's not to say we didn't hit a few speed bumps but we always managed to get back on the same page, quickly. I tear up even now thinking about how strong we are.

Christmas time was here. I promised myself I would get my diabetes back on track. And I tried with as much energy as I could muster but there were so many things in my life I could not control. Despite any feeble attempt I made at controlling my blood sugars, there was no impact. They were high. Very high. So high, I was afraid to test. I was afraid of what I would see. I was scared but I just didn't have time to think about myself. I had no energy left for me.

In my diabetes journey, I have never had the 'signs and symptoms' of diabetes. It truly was pretty silent for me. Until now. I was so thirsty I couldn't stand it. No matter how much water I drank, I couldn't get a head of the thirst. Then I'd feel sick because I was waterlogged. I woke up at night so thirsty I couldn't get back to sleep. I was not just tired, I was exhausted. My clothes were not fitting well, I had gained weight over time, 25 lbs. I had bruises or minor cuts that seemed to take forever to heal. I even noticed some occasional tingling in my feet. I saw a couple of 18 mmols when I tested. I was now pretty sure 18 was not the highest my sugars had gone. I was probably somewhere in the 20's. Holy crap. I didn't have the energy to deal with it. Mom and dad still needed support.

From January to mid February, things finally moved forward for my parents. Diagnoses were determined. Dad was moving to a safe place. Mom was getting, and finally accepting, help. Things were finally settling and it was all good.

It was time to deal with my health, my diabetes. I headed to see my family doctor. He'd known for sometime the stress I was under. I'd been to the office in tears a few times. I told him what I had experienced at Christmas with my diabetes. What my numbers were. That I was ready to deal with me. We sat and talked about the meds I was on. Janumet wasn't bringing my blood sugars down. We tried doubling it previously, still no results. We talked about diet and exercise reinforcing the control I could get from lifestyle changes. For the first 8 years of my diabetes, I was controlled beautifully by diet and exercise. He encouraged me to use that capacity again. I was terrified he would tell me it was time for insulin. I didn't want that. I wasn't ready for that. He agreed it wasn't time for insulin but it was time to get specialists involved. It was time for an endocrinologist and a cardiologist. The referrals were made. I was on a new path.

Wednesday, 26 April 2017

When You Put Yourself On 'HOLD' For Others, Mom And Dad's Journey

You never expect your parents to age. When they do, what a shock.

Mom and dad still live in their home where you grew up. You moved out of town for a job after university. So did your siblings. You got married and had your own kids. So did your siblings. Everything was going along tickety-boo. And then...life changes. And boy, does it. You suddenly wake up one day and realize your parents are elderly. 

You think, and know, they need some help. They don't think so. Ok. Just a speed bump. Health issues get bad for one parent. The other parent is refusing help but still doing an amazing job of trying to cope without 'bothering' anyone in the family. You try to convince them there is help available. Your siblings do the same. Resistance. Placating us. Oh dear. It's getting really tough for them. 

You have your own health issues, diabetes. And your kids have occasional rough patches. 

Your siblings are dealing with their own health issues. They are dealing with their own family stuff, mostly good, a little not so much.

For 8 years following my diagnosis, I did a bang up job of looking after my diabetes. The next two years were burn out and denial. Now, just when I thought I was ready to deal with my diabetes seriously again, my parents' reality came to light. The next two years were going to be hell for all of us.

And hell it was.

I, we, watched dad deteriorate very quickly. This is not unexpected given the disease. Mom was in shock. Mom was living in a world so very foreign to her. They had a very traditional marriage. Dad made all the decisions, mom had input but, dad ultimately made the final decisions on everything. They had, have, been married for 65+ years. This was how they lived. But dad could no longer make decisions. Mom didn't know how to make decisions she told us. She never had to. Mom found it very difficult to make even small ones. What we all realized is that mom could make decisions. Her decision was to do nothing, even when something needed to be done. Dad needed a safe place to live.   Mom needed rest, sleep, food, a break. She married dad for better or worse. This was the worse.

The 'we' I mentioned earlier--my hubby and kids, my two brothers and one wife. My husband and kids were my very large shoulders to lean on. My brothers--I saw a side of them I'd never seen before. I don't mean that in a bad way, no, just the opposite. I'd heard so much about how illnesses like dad's divided family or made family walk away leaving one kid to deal with it all. That did not happen in my family. My brothers and I were there equally every step of the way for mom and dad, and for each other.

During this time, I didn't feel well a lot of the time. I didn't sleep. I cried a lot. I basically didn't, maybe couldn't, look after myself. Oh, I tried but it was easy to forget I had my own health need. My diabetes did not take the break I was. I had gained weight, about 25 lbs and holding. When I tested my blood sugar, I never saw anything below 11-12 mmol. Even saw a number of 14-15's. Still, I couldn't rally to help myself. I was just heart sick over what I couldn't control 2 and a half hours away.

My diabetes was a mess. 

Sunday, 23 April 2017

The "I Don't Care" Years

Two years is a long time. A long time to ignore your health, your body, your thoughts. I didn't know it at the time but I was burnt out. I was living with diabetes burnout.

What is diabetes burnout? Some have defined diabetes burnout as: 
- "a term given to the state of disillusion, frustration and somewhat submission to the condition of diabetes"
- "a state in which patients grow tired of managing their diabetes and ignore it for a period of time"
- "can mean so many things to anyone who lives with any type of diabetes, and it can be triggered by any number of events or by nothing more than the daily physical and mental burden of living this disease" 

Was I disillusioned and frustrated? Yes. For several reasons.
Was I tired of managing diabetes? Yes. Eight years of vigilance.
Was I tired mentally? Yes. It was always on my mind, both in good ways and not so good ways. I just wanted to be like everyone else.

And I chose to ignore it, for a while. Two years.

Oh, I told myself I was going to get back on track. I told myself I would start testing. I even went back to the specialized services for some help. I had very encouraging news: after ten years with diabetes, the pancreas usually wears out. Because I had done such a great job, I had preserved about 80% of my pancreas. WOW!!!

Did that get me back on track? Nope.

Maybe I should see the Registered Dietitian-CDE...ok, but I know quite a bit...saw her, nothing new. That's good, I'm motivated now. Lasted a couple days.

I'm going to start walking again, but, my feet hurt, I have shin splints and my back is killing me. And the weather is bad--too hot, too cold, too rainy, too much snow...no, I think I'll stay home. 

I went back to LoseIt! Connected with app friends again. Promised I'd stay. Nope.

And the whole time, I felt emotionally exhausted. I just didn't want to do it anymore. Were the professions right? Was it because I was testing too often? I don't think so. I just think I was tired. Sick and tired of it all.

I'd watch my family eat whatever they wanted, whenever they wanted. Many people say, just don't bring junk food into the house. Easier said than done. I'm the one with diabetes. Not my family. Don't get me wrong, they were and still are very supportive. But I'm the one with the disease. I should have enough control in my life. To look after myself. To avoid the junk. To eat healthy. To exercise. It hurts my brain just thinking about it.

As an aside, isn't the word 'should' just filled with all kinds of nasty guilt? Ya, like I couldn't feel guilty enough without something else to feel guilty about!

I kept wanting to be back on track but it just didn't happen. I couldn't make it happen. Then life got in the way. Other things in life took over. My elderly parents were in a bad way. Dad's health was not good.

Saturday, 15 April 2017

My Regression

Regression is a tough one. In my first post, I referred to my diabetes regression. I mentioned that I behaved like I was in my teen years again: rebelling, ignoring, pretending the obvious didn't exist, etc. Now if you're a teenager, those temporary behaviours are what help to shape you into an amazing adult. Rebelling makes change in the world. Ignoring teaches patience. Pretending things don't exist is a way of giving yourself a time out while you figure out what your opinion is. In a teenager or young adult, these can be/are positive attitributes. For an adult with a significant health concern, not so much.

I think my diabetes regression started around the time the new Canadian Diabetes Guidelines came out. I had been testing my blood sugars approximately seven times a day. Sounds like a lot, I know, especially since I wasn't on insulin. In my defence, another teen trait, that is how I went 8 years with just diet and exercise as my treatment. I knew my body very well. Not to offer TMI, but I could even tell when my periods were coming by the slight rise in my blood sugars! Now that is amazing info coming from one tiny drop of blood!! None of the health professionals in my care circle were concerned about the amount I was testing. Neither were the benefits companies my husband and I belonged to that co-pay for my supplies. Everyone was so supportive. I'd upload my blood values and enter my food data into my apps in the evening. This kept me busy after my walks. If I was busy, I wasn't thinking about snacking in the evening. It was all good. Everyone on my diabetes team was cheering me on. 

Then the Canadian Guidelines for people with Type 2 diabetes changed. 

The recommendations: if not on insulin, testing randomly 4 times a week at varying times is what was now expected. I was told there was "no need to test so often"; "not type 1, not on insulin"; "testing too often"; "don't be so focused on testing", etc. 

My husband's benefits company was now sending me letters of warning that soon they wouldn't be covering the test strips when I reached the limit they will co-pay for. I didn't even know there was a limit but apparently it had now been lowered based on the GUIDELINE which now became the absolute "RULE". The guideline was now carved in stone for that company. 

In a few moments of "ohhhh, crap" I decided to call my own benefits company. I hadn't gotten a letter from them. There was no issue. They will pay for the strips and supplies I need, even if they have to pay the full amount. Whew. Dodged that ball.

The message my diabetes circle of professional care was giving me had changed based on what was now considered best practice. Now, I understand what best practice means. Yes I do. I also understand how my team needs to promote best practice that is based on the current evidence. But 'best' practice is not the 'only' practice. Since I had been told I was unique in that I managed to keep my diabetes in line, I had preserved at least 80% of my pancreas from all my hard work then I failed to understand why I should fix what isn't broken. Diabetes is individualized care, right?

But. They are the experts. I go to them for a reason.

I found myself listening to the folks who knew, I found myself not testing. I found myself somewhat relieved I guess. I was being given permission. I found myself not caring about my diabetes. I heard myself saying things like "I'm not diabetic today" or "I'll test my blood sugar tomorrow" as I scarfed down whatever I saw that looked good. There were pangs of guilt, yes. Those pangs became very easy to ignore, especially since I was doing what was recommended. A very slippery slope indeed. 

Looking back, with the exception of my family doctor and my benefits company, my team all kinda missed the point. Diabetes is supposed to be individualized care. Testing is what kept me on track. It kept me healthy by keeping my eating and exercise in line. Testing was MY medicine.

The next 4 years were a struggle. 

Tuesday, 11 April 2017

My Journey Began With Gestational Diabetes

Diabetes can happen when you least expect it. You have no family history. You had no real idea you could be affected by it. You have one baby. All goes well. You're pregnant for the second time. All is going well now too...and then...you find out you have gestational diabetes. It's late in the pregnancy. You're tired. The baby...is the baby going to be ok? You can't think about anything but the baby. Testing your blood sugar? Ok. Eat then walk. Ok. But you're oh so tired. But it's for the baby. You're officially being told, no worries, the baby is fine. Once the baby is born, all will be good...

Did I know that having gestational diabetes would change my decision regarding how many children I'd have? It did. Now, let's not blame diabetes for everything. I will do that later on. I was 34 yrs old when I had my first baby. I was 36 when I had my second. To be honest, that also was part of the decision to not have the 4 kids I wanted. I don't think it was ever my husband's plan to have 4 kids, LOL. What surprised me was how much my parents were concerned about me having another baby because of the diabetes. I explained to them that I would be ok. It became a non issue pretty quick though. My husband and I were just plain tired at 36 years of age with two young kids.

Fast forward 10 yrs. You don't feel well. Must be some kind of bug going around. It will pass. Three months later it still hasn't passed. Hmmm. What else could it be? It's now November. There seems to be a lot of information about...diabetes...could you be...? Off to the doctor. If  we are going to test for diabetes, we should also test for any cardiac issues. Oh. Now that, you didn't see coming. Where do you begin with all of this? What do you have to do for you now? It's not for the baby. It's for you.

That's how my journey started. Was it a tough journey? Yes at times. Was it horrible? Not at all. I wanted to know from my doctor, do I have time to make some changes? Yes.

Let's give it 6 months and see what you can do. Ok. Now that sounds great.
Let's get you a blood glucose monitor. Check.
Let's get you testing. Check.
Let's get you some diabetic education. Check.
Let's get you some help from a registered dietitian. Check.
Now the hard part. Lose some weight. I'm 5' 8" and I weighed almost 230 lbs. Yikes.

I lost that weight, well, at least a good portion of it. I got down to 169 lbs. Yay me!
I tested.
I ate the way I was supposed to.
I walked.
I felt great. I had control of my diabetes. For 8 years, only diet and exercise.
Eight years??? Yes, 8 years.

Did you know that in 8 years, you get older? Me? Get older? I don't think so. I'm working full time. I have two children that have grown into amazing young people. We are a family on the go. It's all good.

Then after 8 years, I gave up. I now know, I burnt out. I had no idea that could happen. I had diabetes burnout. I was tired of being so regimented. I was regressing into my teen years. I was acting out. And I didn't care.

The journey continues...

More About The Person...Me!

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