Tuesday, January 31, 2017

Life Lately

So 4 years in and… we’re still looking for a solid diagnosis. It does get tiring. And there are so many nights where I feel like giving up. But I know I have to keep fighting for answers. Sometimes we’ll get an unexpected clue. And you never know when that clue will lead to a discovery.

I’ve been fighting some sort of virus for the past week, but prior to that I was dealing with some serious fatigue. I always have had extreme fatigue, but the past couple of weeks, I’ve just been so drained of energy. I also had a bladder flare up and went into retention. I was taught to self-catheterize about a year ago, but I’ve tried time and time again and failed. Some sort of wave of determination came over me, and I finally successfully did it. It was a proud moment (though I’m annoyed with my bladder), and it’s a relief to know that now we won’t have to go to the ER for this. My mobility isn’t great but isn’t at an all time low. My tremor has been a bit more bothersome than usual lately, maybe because I’ve been using my hands a lot to type or paint. I’ve been continuing with rehabilitation at Constance Lethbridge even though I had to miss this week because I wasn’t doing well. I’ll just have to work doubly as hard next week, though I felt so bad for having to cancel!

I recently went for blood tests which are still in-lab, and I’m waiting for a call for an MRI. Will these yield any answers? Who knows. I tend to be pessimistic at this point, which I know isn’t good, but I try to protect myself from disappointment. Luckily today I saw one of my doctors who actually has an interest in my case and is always caring and helpful, and that lifted my spirits.

I might be going to see a motility specialist in Ottawa who was recommended by a friend for my gastrointestinal issues. My doctor today wrote us the referral, so we’ll just have to figure out the logistics between Ontario and Quebec healthcare.

And that is all that's new in my world. Thanks for following along and supporting me through this long trek to answers,

Sunday, January 15, 2017

Valued Voices Series #3 - Jessica Kendall James

Jessica Kendall James is the blogger behind Our New Healthy. She is also the genius behind the new Spoonie Planner that everyone is talking about and dying to get their hands on. This past week I got to chat with her to learn a little bit more about her personal story, and where her inspiration comes from. I am currently teaming up with Jessica to give away one copy of the planner on my Instagram @ehmichelle, so check it out and enter if you'd like to win one!

Michelle: Hi Jessica! It’s really good to connect with you. I’ll let you introduce yourself and tell us a bit about your journey with chronic illness.
Jessica: So, I’m Jessica, and I’m 25, despite the braces. I started getting sick when I was 9. I was born with some of my illnesses. We know I was definitely born with Ehlers-Danlos  Syndrome. Then all of the autoimmune diseases started to come out because I wasn’t being treated. There were always signs, but it was difficult because I was treated normal. Like I was normal, but I always had something wrong. So it was like a “Jessica’s so difficult” type of thing. I think if people can get diagnosed earlier on, I think it makes it easier to cope with those things. Because I always had that sense of “What’s wrong with me”, and “I’m not enough” and “Why can’t I do things other people are doing?”. So at one point my food wouldn’t stay down because I had a hiatal hernia and it got to prolapse and then my esophageal sphincter was spasmodic, so I couldn’t keep anything down. And I was accused by doctor after doctor of being bulimic. So we went to a lot of doctors that turned me away and I continued to just vomit, to the point where I would just take one of those coloured water bottles to school, and I’d pretend I was sipping out of it but I was really throwing up all day long. And there were other problems. I would get pain, I struggled just to keep up physically with everyone else. I was in and out of the hospital until I went to college. And by the time I got to college I had been to so many doctors that had turned me away, that I was convinced that it was in my head, and that if I just believed I was healthy, I would be. I tried to be normal college kid. Half my head of hair had fallen out, I was covered in  bruises from bad anemia, I was ninety-something pounds. So I ended up in the ER one night, severely dehydrated, and that was the point where I knew this wasn’t in my head. I knew I needed proper medical care, and luckily I ended up at UCI Hospital, where they had a new gastric clinic, and they told me that something’s really wrong. This isn’t in your head. So that was an amazing moment for me and that’s when I started to get diagnosed with my gastric issues. But at that hospital, that was where they stopped.. They knew something else was wrong but they couldn't figure it out. And again I went on a doctor to doctor bounce. Once I graduated I really couldn't work, so I made getting diagnosed my full time job, and that’s how my planners were born.. Because that was the system I used for myself.

Michelle: For any readers who aren’t familiar with Ehlers-Danlos Syndrome, can you explain what it is and what kind of symptoms you experience on a day to day basis?
Jessica: So Ehlers-Danlos Syndrome is a genetic disease, that affects how your collagen is produced. And every single part of your body is made of collagen. So the terrifying thing about EDS is that it comes out differently in every patient, and you never know what you’re going to wake up to tomorrow. My skin is very thin, it’ll rip really easily. Joints will pop out of place all the time. I have Gastroparesis. I have Dysautonomia, so POTS, which is in remission now with treatment.

Michelle: So my next question is about your planner. You created what seems like the most awesome planner, specifically for those who are chronically ill. How did you come up with the idea?
Jessica: I have always been obsessed with organization. Like when I go to Target, I get excited. I’ll just like stand in the organization aisle and it’ll be like there’s music playing. So when I graduated college, I had a goal; I was going to be diagnosed in the next two years. And I put everything aside and make this my full-time job. I said I was going to put everything on hold and get better. And when I started doing it, it was hard! Getting better and getting diagnosed isn’t really a full-time job, it’s like MORE work than other people. It’s like you’re working 24 hours a day. I was showing up to wrong doctors appointments at the wrong time,  because of my brain fog,and just trying to get everything organized. There was just so much scheduling,and my brain fog was terrible, and I wanted to feel like I was accomplished each day. So finally I decided to create a system. I didn’t want to feel disappointed at the end of the day. I wanted to feel good about what I’ve gotten done. And I want my parents, if I’m really sick, to be able to use the planner to know where I left off and help me out. And I saw,it really rapidly helped my ability to get things done, and it changed my viewpoint. When I woke up in the morning, I no longer felt depressed, because I felt like I was accomplishing something. I started to be able to go out more with friends, because I was able to schedule everything so I was using less spoons. So I could go to that one thing a week with my friends, and I could make it to that family dinner, and things like that. So really I saw such rapid improvement and I got diagnosed that next year at Mayo Clinic.

Michelle: How are you hoping the planner helps fellow chronic illness fighters? Do you hope that it helps people get diagnosed more quickly?
Jessica: I’m hoping that the medical diary really helps people get diagnosed much more quickly because it’s scary how long it takes a lot of people to get diagnosed, and it shouldn’t be that way. I’m hoping that being able to record symptoms, and your lab work, and your medications and how you reacted, and your diet, you can get better faster and also prevent flare ups and spiralling out of control. So you can recognize the flare up really quickly, go to the right doctor right away, and stop it before it spirals into a 3 month hospitalization. I just don’t want young women to be out there for 10 years anymore. And to end up with more diseases because they weren’t able to get treatment in the first place. And with the daily planner, I’m just hoping it will give people more spoons to go about and have fun with their day, and be able to accomplish things, and to be more positive and feel good about themselves, and have a go-getter attitude toward life.

Michelle: What is your favourite motto to get through the hard days?
Jessica: “This too shall pass.” And that’s really been a beautiful blessing for me in my life in the way that it’s taught me that with chronic illness the good and the bad, are impermanent. And so you really have to embrace the great moments, and appreciate them, and you also have to see in the bad moments that they’re gonna pass. So that’s what keeps me going and keeps me embracing the good moments.

Michelle: Where does the inspiration come from for your blog “Our New Healthy”?
Jessica: I chose the name “Our New Healthy” because I really was tired of accepting this narrative that I was sick all the time. And I wanted to approach my healthcare from a more positive angle. And my way of doing that's saying “You know what, I’m not sick… This is just my new normal. This is my new healthy.”

Michelle: How had the online community helped you through these times?
Jessica: I honestly… They’re everything. Before I had that, I didn’t know people with chronic illness, and I didn’t have social media until last year. And I can’t believe I went that long without it. I wish I had had it so long ago. So when I started social media and I found them, it really changed my life in a positive way. And I found this support group that’s unbelievable, and I just can’t thank the online spoonie community enough for getting me through the good days and the bad, and experiencing life with me, and being able to connect with people. And I’ve made so many personal friends now through it, which is just a huge blessing, and I am so amazed every day by our strength in numbers, and how much we can get done together. It’s just really cool.

Friday, January 13, 2017

Remembering My Grandmother

A year ago today, my grandmother’s battle with cancer ended. In the past days I’ve kept thinking that I don’t know how I’m supposed to feel on this day. I mean, I mourn and miss her every day, and this day is no different. I will hug my build-a-bear that we made together, along with my cousins, and remember the heart she kissed and put in it. I’ll remember that she told us to hug the bear when we wanted to hug her. I’ll remember her tears while telling the kind ladies in Build-a-Bear what these bears were for. I’ll long for her.

But today, I will celebrate her. I will remember all that she did. Because this lady, was one of the most special people you could have ever met. And I’m not biased! Everyone loved her, and felt their own special connection with her. Before she passed, I got a tattoo in her handwriting from a card she had given me that says “love always”. I felt this was perfect because I always said I want to be like her when I was older. And what I meant by that was the fact that she always chose to see the best in everyone, no matter who it was. She treated strangers like best friends. We used to laugh at her for it, and she’d laugh too, but in reality, it was one of her best traits. She never spoke badly of anyone. How rare is that these days? She was happiness. If I could describe my grandmother in one word, it would be happiness. And that’s not to say that she didn’t have her fair share of heartache and pain in life, but her soul and her energy was something so special that you just couldn’t help but feel happy when you were with her. She loved people. She also loved her alone time playing poker on Facebook, but she loved people. She understood people.And she loved HARD. And that is my life goal, to love as hard as she did, and to try to see the best in everyone.

I did get a few traits of hers handed down to me. One specific thing we had in common was being a people pleaser. She always wanted everyone to be happy, and hated when there was any conflict. If someone she loved was hurting about something, she would worry about it endlessly. And yes, this is highly stressful at times, because we all know it’s impossible for everyone to be happy all the time. But I still like that trait, because it came from her, and she’s my ultimate role model.

So, my garlic loving, poker playing, wine drinking, snuggle cherishing grandmother, I am so lucky to have you watching over me. I am so lucky to have your blood running through my veins. I am so lucky that I have Jess, Becca, Matthew and David because of you. I am so lucky to have someone so magical to look up to.

Channeling the Lion King, "He lives in you, he lives in me

He watches over everything we see

Into the waters, into the truth

In your reflection, he lives in you" ☀️

Sunday, January 1, 2017

Favorites of 2016

Some of my favorite posts to read are lists of people's favorite things. Whether it be tv shows, beauty products, songs, or movies, I love getting recommendations and having a little window into someone else's mind. So without further ado, these are, in my opinion, the things from many different categories that I discovered during the year of 2016 that you must see, must do, must hear or must have.

1. Roots (History Channel Miniseries)

I watched this miniseries, which is comprised of 4 two and a half hour episodes, a couple of weeks ago, and quite literally have not been able to stop thinking about it. This is a remake of a 1977 miniseries with the same name which was based on the novel Roots: The Saga of an American Family by Alex Haley. It follows the story of Kunta Kinte, a Mandinka warrior from West Africa, who is taken from his family and brought to America when he is captured by white slave traders. I won't give much more away, but this miniseries will follow the compelling story of the generations of Kunta Kinte's family, as family is the most important thing to Mandinkas.

This story is based off of real history, and real history was gruesome. So I will warn you, there are many parts in this miniseries that are hard to watch. But it was like reading a good book. I just couldn't stop watching and ended up finishing it in a couple of days. If you want to be completely taken away from your world, learn a bit about history, and introduced to characters that you will fall in love with, this is for you.

2.  Survivor Season 33

I am a self-proclaimed Survivor addict. Have been since the age of 7 or 8 actually, when it all started. And out of all the seasons, none had the punch that this one did. It was the game we all know and love, but cast with so many great strategic players who really love the game. Not only that, but it was won by someone I related to, and the whole world felt his story. Survivor was a show he watched with his mother every Wednesday since he was little, much like my family and I, and his mother had actually almost gotten on the show with him a couple of seasons ago. Well she was diagnosed with Stage 4 lung cancer, and when he got on the show by himself, she urged him to go, even though she was so unwell. Watching his victory was something so special. And he deserved it not only because he had a "sob story", but because he had a great strategic and social game. It was truly well earned. His mother passed away about an hour after he got home. And while he was sharing this story at the live finale through tears, he said something that really resonated with me and I'm sure tons throughout the world; "This is crazy because it's MY life. Like, it's such a beautiful story, like I can get that looking outside of it, but this is my life. And it's real." If you haven't watched Survivor,  I highly recommend you start with this season, even though I kind of just spoiled the winner.

3. Tartlette In Bloom Palette

As much as I loved makeup, I was never much of an eyeshadow person, mainly because I sucked at putting it on (and still do!). However this year I bought this as my first palette, and it has been so perfect for a beginner like me. It has so many neutral shades and lots of mattes, and it applies so easily. This is definitely my makeup favorite of 2016!

4. Minimalism

This year I cleaned out my room. And when I say cleaned out, I mean really cleaned out. My room was full of clutter that I just didn't seem to want to get rid of. And the clutter in my room was making it so much less of a nice environment to spend time in. So I went by this quote, "Have nothing in your house that you do not know to be useful, or believe to be beautiful". And with that quote, I got rid of so much stuff that was just taking up space and energy. And now my room is so much more of a sanctuary. When your surroundings are calm, you're more likely to feel calm, and this is one of my favorite things I tried in 2016.

5. Houseparty App

This app was one of my favorite discoveries! It allows you to video chat with multiple people at one time, and it works amazingly! I use it with my friends from Instagram, and my family who lives in another province, and I find it cuts out even less than FaceTime. It's been so much fun to be able to virtually hang out with two friends at once. Highly recommend.

6. Beyond Type 1 

I am enormously proud to be on the Global Ambassador Council for Beyond Type 1. In their words, "Beyond Type 1 creates and funds a portfolio of programs, technologies and innovations that those living with Type 1 diabetes need to manage, live and thrive.  Our goal is to highlight the brilliance of those fighting this disease every day while always working toward ensuring a cure is on its way." 

Though Beyond Type 1 wasn't founded in 2016, they made so many huge accomplishments over the year, and this is the year that I was lucky enough to get to spend time with the amazing people behind it. There was the Revlon Challenge, and so much money was raised for our cause (Thank you to everyone who contributed!), and the Snail Mail Club was born. People at Beyond Type 1 cleverly pair you up with another t1d to write to, and equip you with a little kit! This is just one of the many ways they've worked to make kids and adults with diabetes all around the world feel less alone. Getting to see it first hand, I am truly in awe of the hard work and passion that has gone into all of this. If anything inspired me most this year, it was Beyond Type 1.  Shoutout to Mary Lucas, Sarah Lucas, Thom Scher, Michelle Boise, and Sara Jensen for everything you've accomplished over the last year. You made my year infinitely better.