Wednesday, May 27, 2015

Victoza Diaries

Have you read the book Rum Diary? It's  a story about Hunter S Thompson's life as a journalist after the Eisenhower era- and his move to Puerto Rico and yes, it was very rum (and other, much more intense narcotic) soaked. 

This is my Victoza Diary. 

On May 15 I met with a brand new (I mean newly minted, AND new to me) endocrinologist. He was young, well-read, knew about blogging and we clicked. Really well. In fact, at one point he said 

"you're the expert in your diabetes, I am here to guide you to be the best expert you can be."

You probably need to read that again, go ahead, I'll wait.

So yes, we are on the same page to say the least. He was happy with my vitals, my numbers, my A1c etc...until he saw how much insulin I use vs. my weight. He looked at me and said "we can do better. There are things out there to help you feel better, would you like to discuss them?"

I mean...seriously, this guy must listen to patient feedback about how to talk about difficult subjects. We chatted about what I do for my exercise, and weight and eating. 

He told me he thought  that Victoza might be a good option for me to help me lower my insulin usage which may or may not result in weight loss. I told him I was willing to try, especially because I hate using so much insulin! It's expensive, and refilling my cartridge every day is annoying.

So he wrote the script and mentioned "some people experience some mild stomach nausea for a few days while they adjust, push through it-and lower your basals by 20% before starting"

Well.

Yes.

Mild is not how I would have put it, but ok Dr. NewEndo.

I started my dose at the recommended 0.6mg injection. On the first day I barely ate. I drank a lot of juice boxes and reduced my basal A LOT. The second day I was planning on going on a big (13km) hike with a friend. I reduced my basal by 80% total, packed gummy candy and a  good bunch of snacks and decided I wasn't going to let diabetes stop me. 

And I did it.

Around 7km in to a 13km AMAZING hike

So I ate a lot of ginger capsules- which do wonders. Every km or so I would have a bit of a snack: protein bar, fruit salad etc and I used regular Powerade and took small sips of it all day. I didn't go low until around km 12 and even then it wasn't "Serious" just was hovering around the 4.5 range-more of a risk to go low. 

The hike itself was amazing. It was a small island in the middle of our harbour that we had to take a small fishing boat to. It was used as forts during the wars to protect us so there were lots of ruins to explore. So great, my friend Megan was an ideal hiking partner and I would do it again in a heartbeat. 

On day 3 things weren't improving in my stomach, and I decided that I would cut back around half of what I was taking for Victoza and slowly work up to 1.8 normal dose. (This is probably where I should say I am not a doctor, I don't condone adjusting your medications without the advice of a doctor and who knows what I did to myself by doing this! Basically don't do what I did.) It worked for me though. Day 4 was much better on the lower dose.

Here's some of the hard numbers for those interested:
Average Total Daily Dose in April: 143u
Average Total Daily Dose over the past 9 days (since Victoza start): 88u

Carb ratio before Victoza: 1:6
Carb ratio after start: 1:20

Pre-bolus time required before Victoza: 1hr
Pre-bolus time now: 15 min

Insulin sensitivity before: 1u brought me down 2 (32 mg/dcl) points.
Insulin sensitivity now: 1u brings me down 5 (90 mg/dcl)

Weight change: over all 2.7lb down

I should note a few things:
-I have been intensely exercising every day because cardio some how fixed the extreme nausea.
-I have been extra thirsty had some dry mouth so my water intake has been 3-5x the normal amount.

I have not even reached the amount of my regular dose yet. I am somewhere around 0.9 now, and working up a little bit every day.

My daily caloric intake has been difficult to achieve because Victoza totally zaps your desire to eat. Especially while adjusting. It apparently can delay stomach emptying so it makes you feel full longer, which is all nice until you realize that you need to eat like 35more grams of protein to get to where you should be nutritionally. Weight loss is not as important to me as being extremely fit and healthy

So, my diary states it hasn't been all easy. It's been a feat for me to keep down some meals and very much mind over matter for a lot of daily tasks. But the results are worth it in my opinion. Less medication means so much to me, the closer I can become to being a normie the better for me. 

There are some pretty big adjustments on Victoza, it's not all glory. It's not a miracle drug and takes a lot of work, math and adjusting. I am still and will be adjusting for weeks. I think my story is somewhat exemplary from what I am reading. I am understanding that I am not the normal reaction to the drug. It is a new medication and can be costly if you don't have coverage, it's an injection if that sort of thing bothers you...

If you're interested and you think you are battling some insulin resistance I urge you to research and discuss with your doctor.

Tuesday, May 19, 2015

FDA Seeks Patient Input

Steve over at happy-medium.net posted about a new FDA draft.

The FDA is seeking patient input on collecting and submitting patient information, so FDA can consider the benefit-risk thinking of patients using medical devices like insulin pumps and CGMs.

The goal of the draft is to bring patient perspectives in to how it considers patient preferences when reviewing the devices we use on a daily basis to control o ur diseases (this of course will stretch past diabetes, as many others live with chronic illnesses managed by devices)

While I am not American, I urge you all to make a comment on the open draft here

Our group has millions of members in it, we can really make some noise if we all do our part in ensuring our preferences, desires and needs are being recognized by national regulating agencies.

Hey Health Canada: Can you hear us? We would love to help you, help us too.

Sunday, May 17, 2015

DBlog Week: Sometimes you have to kiss a lot of frogs to find a prince


I am participating in Diabetes Blog Week (my THIRD one, whaaaat.) You can learn more about the week here and check out the prompts here. Make sure to give some love to the participants here. Today's prompt is.....well I fell off the rail so I am just writing.

I was doing so well.

Wake up, hulk smash breakfast, Slam coffee. Write. Tap tap tap.

Pour heart out on screen. Want to skip posting because what if?

Then Friday happened.

I wanted nothing more than to help Katy over at Big Foot Child Have Diabetes have the most wonderful birthday. Because her blog has brought me joy and laughter and furious nodding of  "me too, me too" and awe and admiration for years. Because last year at the Friends for Life Conference in Orlando I had a full conversation and a meal with Katy, I found her incredibly insightful, charming, hilarious and downright wonderful to be around and I HAD NO CLUE she was the same person who wrote a blog that I follow so closely. She never once mentioned that she writes the funniest diabetes blog in the blogosphere. Geesh.

Funny story, so I was sitting in my cab leaving the conference, heading to the airport last year with Karen (who happened to start this whole blog week thing, so you should know who she is. she is awesome.) And I said to her: "That lady in the sundress with the handsome children, well behaved standing and waiting for a cab, she is really lovely. Do you know her?" And Karen said "Oh that's Katy from Bigfoot Child Have Diabetes." So that's how I found out....driving past Katy waiting by the curb with her adorable family.

ANYWAY, I wanted to give a little something back to Katy on her birthday. She has a perverse love for knowing what people eat (so do I, we have a lot in common actually). But man oh man what a day Friday was.

I was going to meet my brand new endo, so I already had nerves.

I woke up, nice and in range. I ate a piece of peanut butter and banana toast and it all went to hell. I was on day 3 of my infusion site, so it was iffy anyway. But nothing was bringing my sugar down that day. I was high all. day. long. Until that night when I was low.

I didn't eat anything proper all day and I failed. So Katy, here's my promise to you....one day soon I will document everything just for you!


My new endo is amazing. He is young, fresh, and full of empathy. We had a great chat, was surprised that I was a little upset that my A1C was up .4% because it's still really great. But we talked long and hard. I told him about my blog, my advocacy, my job. I told him I am looking for someone who will bend rules a bit to help me fit into the role my diabetes has created. He said he is aggressive with treatments and will stop at nothing to make sure his patients feel like they are getting the best.

He said at one point "Well you're the expert, I am here to help you continue to be the best expert you can be." I choked up. No medical professional, especially not diabetes specialist has ever said that to me. They have never recognized that while our bodies have given up on insulin production we all remain very unique well-oiled machines.

He didn't even care when I said "I don't count carbs, I bolus based on foods, my feelings, my day and sometimes even where the moon is in the sky. So sorry, I don't have a carb ratio." He said....."that makes sense." Which proves, to me that he gets it. He understands that diabetes is more than what is in the books they read in university.

So to have a specialist that will guide me in being the expert...I consider myself lucky.

He is my 4th endocrinologist in 9 years and I guess it's true.

Sometimes you have to kiss a lot of frogs to find a prince.

In this case I did not kiss any of my doctors, but I want to kiss this man's feet for committing to help me.

Thursday, May 14, 2015

DBlog Week: Day 4- Changes


I am participating in Diabetes Blog Week (my THIRD one, whaaaat.) You can learn more about the week here and check out the prompts here. Make sure to give some love to the participants here. Today's prompt is CHANGES.

Ok. First thing is first. Thank you all who read, commented and shared my post yesterday. It was very difficult to write, and knowing that I have a lot of people in my corner really does mean a lot to me. I also want to make a note that I don't think being thin or average or athletic or....being in a body is easier for anyone internally. Body image issues are one of the biggest challenges for almost every single person I know. It's not a unique to me problem so mad respect for everyone who loves themselves or is trying to!

Next.. changes.



All I can think of when someone says changes is Tupac. I digress (but man, that song is GOOD)

There are two major changes I have noticed since my diagnosis 25 years ago. I mean I guess the medications have changed (no longer using regular and NPH for the most part) meters have changed (no peeing on a strip to check sugar) pumps, pens, etc etc etc. There have been a lot of monumental changes in diabetes since diagnosis but I think there are two that truly stick out for me. 

1) Continuous Glucose Monitoring: Having the ability to see what my blood sugar is, how certain foods, activities, insulin, hormones etc can affect my blood sugar over all has definitely, without question extended the length of my life. Knowing and being able to react proactively to the roller coaster of diabetes has helped my body be the best for me. Being able to set insulin dosages based on trends in my blood sugars has absolutely given me a quality of life that I did not have before and for this I am forever grateful. I always think about the people who research and develop these amazing tools. If they aren't living with diabetes, are they  genuinely doing it to make other people's lives better? I wonder if they know the impact their knowledge, curiosity and enthusiasm for their science has on the day-today lives of millions of people around the world.

2)The diabetes online community: There have always and will always be support groups for people living with chronic illness. The power of "me too" should be counted as medicine for some people. I know that there are days where I can browse through one of the hundreds of blog posts, Facebook groups, diabetes hashtags on twitter, instagram, tumblrs and I will always be met by an influx of people who are also in my boat. It sucks when you think about it, but at the same time it is comforting. Anywhere, at any time, you can log on the Internet and hear "me too." It makes me feel less alone in this fucked up world of blood sugars, medications, complications etc etc etc. I think this has been a big change for me, I am more comfortable fighting for what I think is right. I know that I am not alone in my thoughts and feelings on generally any subject in regards to diabetes. I know, always that there is someone on the other end of my laptop or phone that knows exactly how I feel at any given time-and to me that is life altering. 


Plus, I can't even tell you how many amazing friends I have met through the doc. 





Wednesday, May 13, 2015

DBlog Week Day 3- Clean It Out


I am participating in Diabetes Blog Week (my THIRD one, whaaaat.) You can learn more about the week here and check out the prompts here. Make sure to give some love to the participants here. Today's prompt is CLEANING IT OUT.

I have been thinking about this topic for awhile. Wondering, thinking and musing if I was truly brave enough to ever actually post it. Sometimes I love airing out my deep, dark secrets and then hoping nobody will ever bring it up to me in person. 

A silent acknowledgement that they have read what is plastered on the back of brain, and a swift move along. Understanding that our deepest inner thoughts are what shape us to be the people we are.

So here we are. I stare blankly at the screen. Am I ready for this? Is this how I want to verbalize some of my thoughts on this topic?

If you have ever met me in person, you know that I am fat. I have spent my entire teen and adult life battling weight gain. I have been through specialists, therapists and tests. Because, well...and this is where this may sound weird...it doesn't make sense that I am fat (and I think that this comes off wrong, I don't think it HAS to make sense that you're fat or not to be able to accept that being fat is OK and acceptable and perfectly fine.) It's not in my immediate family. I exercise...often. Usually intensely. I run, I lift weights, I am active, very active. I eat extremely well (except for when I don't I guess.) I manage my blood sugar tightly. I do what I am told by doctors.

I have tried prescription weight loss pills. The "sure fire" way that 99.9% of my endocrinologists patients lose weight! I followed the directions very specifically and was followed by a nutritionist intensely. I didn't lost a pound or an inch. I went through years of psycho therapy with the top therapist in the country who specializes in diabetes, chronic illness and behaviour management. He released me as a patient because I wasn't lying. I was trying. 

One day, my doctor did a test for Cushings syndrome. If you're not familiar with cushings you can see the info here. My doctor sent me for many tests, including an MRI and they weren't conclusive OR inconclusive. My blood tests showed moderately high levels of ACTH and my pituitary had a non-cancerous fleck smaller than is possible to diagnose. It eventually went away after close monitoring, my cortisol levels remain high no matter what so the endocrinologist calls it borderline. She also explains that my body releases cortisol which helps the body hold on to fat cells (in layman terms.)

So I am in a rock and a hard place I guess? My exercise is vital to my blood sugar stabilization, mental health and overall well being and it causes cortisol production. See the problem?

So in the past year I have decided to give up the ghost of weight loss. I don't think I will ever lose weight. I am not and have not given up the idea that I will continue to be the best and healthiest I can be. This does not give me free reign on junk food and lack of exercise. This is simply me taking pressure off myself to fit a certain mold of what a healthy, beautiful body looks like.

I'm going to let you in on a secret: it can be absolutely torturous being fat in today's society. There are days that I wish I was given any other body. Dealt any other hand of cards. I will see women at the gym who can run without ankle pain and contort their bodies in Yoga poses that I could only dream of doing due to the size of my body. I often go in to clothing stores and thumb through some of the beautiful fabrics, cuts and styles knowing that I am getting side eyed because the clothes in those stores will never fit me. It's not self-deprecation, it's a cathartic release in ways for me. It's like letting go of what won't be.


A lot of people say that my feeling of being judged based on the look of my body, rather than what it can do, is in my head. I often hear that. Maybe it's partially true. But have you ever read any article about Tess Holliday? She is a size 22 model (same size as me, though our bodies are composed slightly differently), and the words that are thrown at her are flames licking a candle. Sometimes they make her thick outer wax melt down and break her down. I have seen her respond sometimes and I feel for her. She is an absolutely beautiful woman, the first woman who is plus sized (and by that I mean not size 14) who is a professional model with an international agency and people write comments-THOUSANDS of comments about how they feel physically sick looking at her.

These are real people making these comments. I am not a model, nor do I pose like one. Are these people ringing me through at the grocery store? Do they see me fill up my car and need to feel pity and disgust at my body?

When I am out with my fiancĂ© are people wondering what the hell is going on there? He is 6'5", masculine and lean...and incredibly good looking.

These are things that sometimes flutter in my brain. I try really hard not to read the comments, or articles on the Internet about weight because now that I feel mentally healthy enough to accept that my large body can be extremely healthy if I put the effort in, I don't want to waive on that. 

But when every second post on my Facebook feed is about weight loss, Beachbody, shakes, low fat, high fat, low carb, high carb. Every single person talks about food and weight and bodies and fitness like it's some sort of life achievement to be strict and  in control of all of these things. If being in control of your body is something that gives you actual, genuine joy: congratulations-keep it to yourself.

Tell me about the joy you get from cooking a meal and eating it-no matter what it is. I want to hear it.
Tell me about the joy you get from hiking in the woods, or running a marathon. I want to hear it.
Tell me about the joy you get from reading about different trends in the fitness industry. I want to hear it.

Do not tell me how to do any of that. I have my body acceptance dangling by a string and when you share these things with me thinking they may help me lose weight no matter WHAT your intentions, you are effectively cutting my string (and being a dick.)

I don't need to be told I am beautiful. I truly don't. At least not by you. If my fiance is reading this: you don't get a pass you still need to tell me I am beautiful everyday for the rest of our lives ;)

There. I cleaned it out. My body image is surprisingly well for someone who the media, and assholes on the internet says should hate everything about themselves.

Edit:

I decided I am not done. 

When you live as a fat person with a chronic illness like diabetes, you are often seen as a pity. What a shame. Poor girl was dealt a hard life.

My life is wonderful. I am thankful that I have you, reading and commenting.

This community has built me up to believe in the good in people, so keep doing your thing.

Unless your thing is constantly talking about weight loss. Because then all I hear is "I never want to look like Alanna."

Tuesday, May 12, 2015

DBlog Week Day 2: Keep It To Yourself


I am participating in Diabetes Blog Week (my THIRD one, whaaaat.) You can learn more about the week here and check out the prompts here. Make sure to give some love to the participants here. This weeks prompt is KEEP IT TO YOURSELF.

This prompt is supposed to be what we keep to ourselves when we are blogging and sharing our lives with diabetes. There's not a lot diabetes-related that I keep to myself. I try and be as open and transparent as I can.  That is the best way for us to foster the community of "me too."

Sometimes I think about keeping my scares with complications to myself. But then I remember that complications are nothing to be ashamed of, despite what we are told by our healthcare providers, media and sometimes other diabetics.

Sometimes I think about keeping my opinions on caring for a child with diabetes to myself, but then I remember that the parents that read it may be struggling to truly know what their child is feeling or thinking, so I tell them. I let them know that I was there.

So what DO I keep to myself?

Usually I keep my mundane day-to-day life to myself. I tend to keep my work in diabetes separate from this blog as much as possible, and my family stays off my blog for the most part.

So I guess I don't keep A LOT to myself. Except that my blog has been majorly lacking in posts lately.

Did you know you can find me on twitter @lifeont1? Come say hi. I'm a lot more chatty there :)

Monday, May 11, 2015

Diabetes Blog Week 2015: Day 1- I CAN.


I am participating in Diabetes Blog Week (my THIRD one, whaaaat.) You can learn more about the week here and check out the prompts here. Make sure to give some love to the participants here. This weeks prompt is I CAN.


Man oh man.

The words I can mean something different to everyone, every day, every hour, sometimes every minute.

To some people I CAN can mean they can run a marathon, climb a mountain or swim across the English channel.

To others I CAN can mean they can open their eyes and face the first few hours of the day before going back to bed.

I, personally, can be anywhere in between the two. Thankfully I am mentally and physically well enough that I don't often find myself needing to be in bed during the day, and thankfully I don't feel the need to run marathons or climb mountains (there seems to be a lot of logistics there that I simply care not to deal with.)

I think the importance of the words I CAN will mean something different to everyone, especially when you are living with a chronic illness like diabetes. The best thing to do is embrace it and understand we all have varying levels of I CAN and they are all equally valid.

Here are a few I CANs that I will try today.
-I CAN ignore rude comments from strangers about diabetes
-I CAN compliment a friend or family member today
-I CAN pick up the phone to call a loved one just because
-I CAN win this damn fitbit challenge
-I CAN lay on my deck with a big glass of wine and not feel guilty
-I CAN be a good, empathetic person