The Big News, and My Message to Celine Dion - From Another SPS Patient

Celine Dion announced this week that she’s been diagnosed with Stiff Person Syndrome. This was not a major news story that I ever thought I’d wake up to. After all, I’ve spent years living in a world where no one knew what the heck I was talking about when I mentioned my illness, even most doctors. 

At my slew of medical appointments, it is rare that a new doctor or nurse I speak to has heard of SPS. I usually get a look of confusion and the response of “Hmm I guess I’ll look it up later”, or they repeat back to me “Stiff person Syndrome?”, as if I just spoke alien to them.

But living in Montreal, where here in Quebec she’s our hometown hero who we love, that response is already turning into, “Oh, like Celine Dion!”

My mom, my dad, my grandmother, and I were all flooded with texts sending us links to articles or asking if we’d seen the news.

Watching the video Celine posted was heart-wrenching, because I could see the pain in her face and hear it in her voice. She must have been going through hell for a long time, and it brought me right back to the early days of my disease before my diagnosis was figured out. And the world just felt so unfair when I heard that her spasms were affecting her diaphragm, and therefore her voice.

This disease is torturous and unrelenting and painful to go through to begin with, and for it to affect what she loves most just seems so unfair.

A few years ago I wrote this quote about living with Stiff Person Syndrome; “When you have a rare disease you face two challenges. One being the illness itself, and the other, living in a world where so few people understand what you’re up against.” Thanks to Celine’s openness about her diagnosis, I think a lot of us will feel a little less alone after this week.

If I could give one message to Celine, apart from a big hug, I would tell her that she’s a fighter. I would tell her that I’m sending her all the love and good vibes and prayers in the world for her team to find the right treatments so she can continue doing what she loves for a long time. I would tell her that she’s not alone, and all of us in the small but mighty SPS community are standing by her and lifting her up. I would tell her how she’s already changed our lives by the awareness she’s brought to this disease. I would tell her that she has the biggest cheering section, and we’ll all be fighting right alongside her. You’ve got this Celine, and we’ve got you! 

Courage, Céline 🤍

10 Kids Thriving with Type 1

After meeting some of the coolest kids ever during the conference in the summer, and after being introduced to some of them by social media, I knew I had to write this article. They are brave. They aren't fearless, but they face their fears. They show Diabetes who's boss, even though they're pint-sized.

Mason

Mason, who just turned 7, was diagnosed with Type 1 when he was 3 years old. His mom and dad help him raise awareness on Instagram and Facebook by sharing their Type 1 journey. He and his mom actually made an awareness video on Facebook that pulled in 50,000 views! He even takes time to educate his class at school by showing comic book slides made by his momma.

It was the 4th of July when Mason ate an entire bowl of tortilla chips and mom’s first instinct was that he has diabetes. She took her to the doctor, who ignored her suspicions, despite her insisting on testing. By the next day, he couldn’t even hold his head up, so he was rushed to the ER where he was diagnosed within 30 seconds.

His favourite things to do naturally include fighting with his little sister, going to parties, playing video games, drawing and swimming. When his blood sugar goes low, his favorite snack is cotton candy because it melts so quickly in his mouth! Never thought of this, so smart!

I asked Mason if he could tell the whole world one thing about Diabetes, what would it be?  He says, "You do not get diabetes from eating sugar. Also I can do anything other kids can do, and maybe even better!"

You can follow him on Instagram @1mightytype1family.

Jalaeny

9 year old Jalaeny was diagnosed 4 years ago, at age 5 with Type 1 Diabetes. 

During her kindergarten year she began to wet the bed. Her mom started limiting her liquids around bedtime, but she would still beg for more. During a short 15-minute grocery trip, she had to use the bathroom twice! Her mom brought her into the doctor and right away they tested her blood sugar... it was 560 mg/dL/31.1 mmol/L! 

Jalaeny loves to have fun making slime, and making music videos with her friends. She's plenty busy with fundraising and fun with Type 1 Diabetes friends. She does the JDRF walk, goes to Diabetes camp in the summer, and attends the Children's with Diabetes Friends For Life conference in the summer. When her blood sugar goes low, she likes to snack on Starburst! She's proud that she can do anything anyone else can do, with the help of her Dexcom and Omnipod!

I asked Jalaeny if she could tell the whole world one thing about Diabetes, what would it be?  She says, "If I'm at a birthday party I can have a piece of cake!"

You can follow her on Instagram @mrs._fred.
 

Elise

10 year old Elise is a pro at T1D.. she was diagnosed 2 days after her first birthday at her 12 month check up! Her family does the JDRF walks in multiple cities (Dallas, Lisbon, Toronto and NYC), and she goes to Lions camp. She's also part of the Bionic Pancreas clinical trial. When her blood sugar goes low, her favorite snack are Hi-Chews, and some of her favorite activities include reading, writing, playing soccer, and playing with her American Girl doll. 

She is super proud to be the youngest kid to try the Bionic Pancreas in 2014. Not only that, but this year she published her own book at the age of 9! 

I asked Elise if she could tell the whole world one thing about Diabetes, what would it be?  She says, "That you can do anything, even if you have it..." 

You can follow her at www.teamelise.com. 

Logan 

10 and a half year old Logan has quite the impressive resume. After his MMR Vaccine he was sick with a fever for a few days. Shortly after, he started drinking a lot of water, and he was barely eating. He was also sleeping in in the mornings, so that was their sign to call the pediatrician. Luckily, they have a great medical team who recognized the symptoms right away. 

Diagnosed at only 17 months, he has thrived with Type 1 in amazing ways. Again, at 10 years old, these are all the things he’s fundraised for: Friends for Life, Riding on Insulin, JDRF Promise Ball, JDRF 5K Endurance Team, Beyond Type Run 5K. This past year, it was also because of Logan's initiative that everyone at the Friends for Life conference got Mickey Bars! He also says he’s a Beyond Type 1 Bike Beyond groupie. I say he's a go-getter.

This guy’s got a lot of hobbies. He collects coins, baseball cards, stuffed animals, stamps, Disney pins, hot wheels, and many more. He also likes Monster Trucks, Lego, art, traveling, biking, and lots of stickers! When he goes low, his favourite snacks are cookies, but most of the time mom makes him have juice.

Logan is proud that we have a Type 1 community and he's not just a “lone dog”. He also says he’s proud that he’s able to fundraise and help educate his family and friends.

I asked Logan if he could tell the whole world one thing about Diabetes, what would it be? "I want the world to know what it is so I don’t have to explain it to people all the time and then everyone can help find a cure."

You can follow him on Instagram @elbowbumpkidsmom.

Brenley 

3 year old Brenley is quite the little force. She was diagnosed with Type 1 at just 2 1/12 years old. Brenley’s parents knew something was wrong. Red flags started popping up. She was potty trained at 21 months but she kept having accidents, which wasn't like her at all. Then quickly came the extreme thirst and the dark circles under her eyes. 

Brenley is 3, and will be turning 4 November 7th. On April 14th, 2016, her mom took her to her pediatrician and expressed her certainty that she had Type 1. Labs were taken, and then came the call… she had a glucose level of almost 600 mg/dL/33.3 mmol/L, and they rushed her straight to the children’s hospital.

Little did they know the 7 months later they’d be hit with another curveball. Brenley was diagnosed with cancer. A Stage 3 Rhabdoid Tumor of her left kidney. She just completed her treatment, and in the near future they’re looking forward to taking part in a bunch of Diabetes and Cancer events.

This sassy girl is “absolutely obsessed” with Bruno Mars. It is how they got through mostly everything in the last year. They listen to his music almost all day and she loves having dance parties. When Brenley's mom asks her what she's most proud of, she says "I'm stronger than anyone!"

She’s discovered her favourite low-carb snack; organic cucumbers and baby carrots with Greek yogurt ranch dip. Sounds good to me!
 
I asked Brenley if she could tell the whole world one thing about Diabetes, what would it be?  She says, "I would want them to know how it feels to have a low blood sugar." 

You can follow her on Instagram @type1.brenley. 
 
Tre

You don’t want to mess with 8 year old Tre, he’s a karate pro! Only 2 weeks after turning 5 on April 7th, 2014, Tre was diagnosed with Type 1 Diabetes. He had a few symptoms like fatigue, thirst, and frequent urination, but they were cleared (and obviously misdiagnosed) by the doctor, so they were given the go ahead to go to Florida for vacation. The second day there, mom Melinda knew something wasn’t right and took him to the ER. Turns out he had a blood sugar of 879 mg/dL/48.8 mmol/L, his a1c was 13.9%, and he was in severe DKA! Mom knows best.

Tre is captaining for Beyond Type 1’s Power Up 2017 campaign, and this year they just walked in their 4th JDRF walk, which is always a fun day for them. Tre’s family participates in many online campaigns to support T1D awareness, and loves connecting with other families. Next up on their to do list… Diabetes camp!

Apart from loving Karate, some of Tre’s favourite things to do are playing Minecraft and building Lego masterpieces. His favourite low snack is snack apples and peanut butter, and he says that what makes him proud is “Breaking boards in karate makes me proud because it's kind of hard, but I did it!”

I asked Tre if he could tell the whole world one thing about Diabetes, what would it be?  He says, "I would want the world to know that it's not the best and it's hard sometimes, but type 1 diabetes makes you strong and brave. In time, it gets a little easier to deal with." 

You can follow him on Instagram @melinda_t1dmom.

Eva and Leah 

Eva and Leah are Type 1 twins! Having just turned 2 in September, the girls, and their parents sure are fighters! Leah was diagnosed first. She was 10 months old when she went into DKA and came close to losing her life. Only 9 months later, they tested Eva’s blood sugar and were able to catch it before she got really sick.

As a family, they do the JDRF One Walk, and in the summer, they attend the Children With Diabetes Friends For Life Conference.

In their spare time, they love to jump on things. We might have little chefs on our hands because they love to cook in their play kitchen. They also love to play dress up and color.

When their blood sugar goes low, their favorite snack is cookies. I asked what makes them proud and dad Geordan told me at the moment it was putting on their own socks and doing things for themselves.

I asked Eva and Leah's parents,  "If they could tell the whole world one thing about Diabetes, what would it be?  They said, "Diabetes is an epidemic, it could happen to anybody; especially Type 1.  We need more research on this disease."

You can follow them on Instagram eva_rose_leah_skye.
 
Henry

Henry is a feisty 10 year old who was diagnosed in 2013. He was diagnosed on February 7th, the same day as one of his favourite people, celebrity chef Sam Talbot was diagnosed! He was going to the bathroom a lot. Then one night he ate pizza and he was up peeing and drinking all night! In the morning, he told mom Sara that he didn’t want to go to school and right away she knew there was something wrong. So she brought him to the hospital and that day he was diagnosed with Type 1. Henry thought that he was going to lose his legs because of it, since he only knew about someone with Type 2 who didn’t take care of themselves.

Henry fundraises for Beyond Type 1, and he says it’s because of this; “They give 100% of the donations back to do things like help kids who are new to Diabetes and just want to get out of the prison the diabetes can make you feel like you are in.” This is part of the reason he loves helping his mama out with her Beyond Type 1 work. He says that Type 1 Diabetes camp is best for kids who don’t know anyone with Type 1, but that he knows a lot of kids with T1D, so he didn’t like it very much.

Some of his favourite things to do are to swim, draw, read, write, and to taekwondo. He got asked what makes him feel proud and his response was “I don’t know what makes me feel proud. Maybe I always feel proud so I don’t know when it’s happening.” Smart kid!

I asked Henry  "If you could tell the whole world one thing about Diabetes, what would it be?"  He said, "I want the whole world to know that no one needs to be afraid, its just something that happens and there are people like me that can help you feel less scared."
 
You can follow him on Instagram @sarabeejensen or @herculesandhenry.



  Isabella

7 year old Isabella (or Isa for short) was diagnosed only 2 weeks before her second birthday, on August 28th, 2012. Mom and dad started noticing some of the classic signs of T1D (thirst, wetting the bed, etc.), then one day her teacher sent a note home asking them to send in a bottle for her because she was always asking for something to drink. It was an immediate red flag, so they took her to the pediatrician, who recognized the symptoms right away and did a urine test.

Isa loves getting involved in the community. She’s a Beyond Type 1 Ambassador and got to walk the stage with Nick Jonas when he received his HERO Award at the Radio Disney Music Awards. She loves going to the CWD Friends for Life conference, and this summer was her 5th year! This fall she’ll participate in her 6th JDRF walk, with a team of over 100 people walking with her! She also had the opportunity to represent North Ohio as a 2015 JDRF Children’s Congress and helped them show Washington was living with Diabetes is like. She's kind of a big deal.

Isa is a triplet, and loves spending time with her brother, Max, and her sister, Mia. She loves playing school even when she’s not in school. You can always find her reading or doing math workbooks. She’s also a brown belt (soon to be black) in Taekwondo!

She loves decorating her pods and showing off by wearing them on her arm and leg for everyone to see. Dad Greg says Isa is a shy kid and doesn’t like to be the center of attention. With a growing social media following, she is proud of herself when her mom and dad tell her that she inspired other people. Now that she’s starting to understand the whole social media thing, she’ll say things like, “Post that pic on Instagram!”

I asked Isa, if she could tell the whole world one thing about Diabetes, what would it be?  She says, “Diabetes can’t stop you from doing anything. You don’t have to stop doing what you like to do a lot.”   

 You can follow her on Instagram @inspiredbyisabella or on their Facbook page, Inspired by Isabella.


Addison

 



7 year old Addison has been at this for a while; she was 2 and a half when she was diagnosed on February 28th, 2013. They were visiting their family out of town at the time, and they called their pediatrician from their hometown, because they starting suspecting diabetes. They were told the signs to watch out for, and the next week they called him back because all of the symptoms were happening. Mom decided to bring her in for them to test her blood sugar. Well, mom knows best, and she was diagnosed that day.

In the past 4 and a half years, Addison and her family have raised over $25,000 for diabetes! Dad Ryan participated in 2 Tour de Cure rides, and they’ve participated in 5 JDRF walks. She’s been attending the Friends for Life CWD conference for 3 years and they plan to attend as long as they can!

Addison loves Pom Poms, swimming, and is a pretty great little gymnast. When she’s not doing sports, she loves playing outside with her friends and building forts with her little brother. When it’s time for a low/no-carb snack, she likes sausage and cheese.

She gets super proud of herself when her blood sugar shows 100 mg/dL/5.5mmol/L on her PDM. She loves school, so she loves seeing smiley faces and stickers on her homework. One of the things she’s most proud of and loves to show off are her pods, because she paints them all herself. Last year her Kindergarten class all painted a pod and gave them to her on her diaversary! I think that's amazing. She gets really excited when her friends wear her pods and show them off to the rest of their friends. 

I asked Addison, if she could tell the whole world one thing about Diabetes, what would it be?  She says, “Diabetes is not easy but it can be fun sometimes. I don’t like having diabetes because sometimes I have to eat when I am not hungry but sometimes I need to eat and I like getting candy sometimes when I have a low blood sugar.”   

You can follow her on her Facebook page Addison's Angels.

10 wasn't enough, so surprise, we have one more!


Maeve

7 year old brave Maeve is also a pro at this, being diagnosed at 18 months old on May 20th, 2012. She was diagnosed in a complete crisis! One Sunday morning she didn’t wake up from her crib. She was in DKA, after 7 visits to the paediatrician and urgent care who kept misdiagnosing her with things like the flu, step throat, etc.

Her family does the JDRF Walk, and also attend the CWD Friends for Life conference every summer for the last 5 years. The family together holds multiple of their own fundraisers for JDRF, the Diabetes Research Institute, and Children with Diabetes.

To treat her lows, she usually used glucose tabs, or ‘glue-keys’, as she calls them. She loves drawing, reading, jumping on the trampoline, and playing flag football. She’s one of the only 2 girls on the team! What makes her proud is doing well in school.



I asked Maeve, if she could tell the whole world one thing about Diabetes, what would it be?  She says, “Don't worry, I am ok. I'm not low all the time!”

 You can follow her on her Facebook Page Brave Maeve.

 ~
These kiddos are my heroes.  

My Friends for Life 2017 Experience - Year 2

Last summer I had one of the best summers I've ever had. One of the reasons was because I attended Children With Diabetes' Friends For Life conference for my first time. This is a conference for people with Type 1 Diabetes, and it is HUGE. Over 2000 people attend, all people with Type 1 Diabetes, and the rest who love someone with Type 1 Diabetes.

This year (and they've now announced for the years to come), it was at a Disney hotel, which gave it that extra little bit of excitement, because who doesn't love Disney? In my humble opinion it makes it a lot harder to be sad on Disney property.

We flew out on Tuesday, which was registration day. You go in, you get your FFL tee, and you get a green or orange bracelet. Green for Type 1. And Orange for Type 3 (someone who loves someone with T1D). They also provide an extra yellow bracelet to those who have Celiac Disease, which is very common in Type 1! This allows them to go into the special gluten free buffet at meal times.

Morgan, Gretchen, and I with our green bracelets. Morgan has an extra yellow one!

 My parents and I got organized, checked out the hotel grounds for a bit, and then I met up with one of my best T1D friends, Mary. She is with Beyond Type 1 who had a session, and a booth in the exhibit hall, so let's just say she was pretty busy, and I feel so lucky that we got to sit in a restaurant for two hours and just chat and have some time to ourselves before things got crazy.

The next morning, I met up with my FFL from last year, Morgan, who I love dearly and it was so good to be reunited. Next came Gretchen. Gretchen and I have been pen pals for over a year, and when we found out she was coming to the conference this year, it was Beyond exciting. So you can imagine our giant hug when we saw each other. It was so surreal and getting to spend the week with her was so special. Now we were just missing our FFL from last year, Ashlyn, who got stuck coming a day late because of school, but arrived the next day and got bombarded with hugs.

Gretchen, Morgan, and I waiting for Ashlyn with our Diet Cokes.

 That day is what I called Day 1. It was the first day full of sessions, meals, events, and the exhibit hall. The first session I attended was 'Meet Chris Ruden'.  Chris Ruden is a power lifter with Type 1 who is also a motivational speaker. He was born with a congenital defect; he has 2 fingers on one hand and a shorter left arm.   I had previously followed Chris on Instagram and didn't know much about him except for the fact that he was good at lifting weights. He has a large social media presence so I figured I'd choose his session to go to, to see what he's all about. And I was amazed. There is a reason that guy is a motivational speaker. And that's because his words make you want to get up and do something. Right then and there. As someone who also has multiple disabilities, it was definitely a very inspiring session for me. Hearing his story about him accomplishing what everyone told him he could ever do was so powerful.

The awesome Chris Ruden and I...He has slightly more muscle.

Next was the session I was most excited for; Beyond Type 1 and Bike Beyond! Team Bike Beyond is a group of cyclists with Beyond Type 1 who are currently biking accross the USA to raise funds and awareness for T1D.. and they are unbelievable. So in this session, we got to do a Skype-like session with them. Mary, Dana, and Michelle from Beyond Type 1 stood onstage and did a great job asking questions to the bikers. It was exciting to see some familiar faces who are on the Global Ambassador Council with me. If you go to Beyond Type 1's Facebook page, this was actually live streamed so you can watch it for yourself! These people blow my mind every day, and I am so grateful for their strength and willingness to give it their all to raise awareness.

Some pictures from the Beyond Type 1 Session, with Mary onstage.

Next was the Grand Opening Ceremony. If you read my post from last year, you'll know that every item of food is CARB COUNTED Yes, the carb counts for everything are out on the table. It really is Type 1 Diabetes heaven.

It was also the opening of the exhibit hall, which is always my one of my favorite parts. All the sponsors, and many other t1d organizations and shops set up stations, and have fun, interactive things to do. Especially for the kids. Tic Tac Toe basketball, slime making stations, bean bag tossing, etc. As usual, there were also great giveaways and handouts from various companies. Bags, MANY fidget spinners this year, tees, stress balls, stickers, etc.. let's just say you need an extra suitcase for all of the gifts they give you.

Some pictures from the Exhibit Hall.

Some of my favorite booths included Myabetic, because I happen to be in love with their bags. Beyond Type 1 had a gorgeous booth and had people writing letters to the Bike Beyond Team while they're on the road! I wish they had a more prominent spot in the hall because what they do is really so unique and incredible. Connected in Motion, who takes people with T1D on fun excursions and camping trips also had a great booth. I was also so excited that Genteel was there with their own booth! They had a fun game going on. If you could guess your blood sugar when they tested it, your name would get put in a draw to win a Genteel. One of my highlights was spending quite a while chatting with the doctor who invented the Genteel. A brilliant, and kind man. I found I learned a lot in that conversation. Of course Pump Peelz was there doing some great giveaways and selling Peelz at discounted prices, and you know we can all never get enough Pump Peelz. All the big companies like Animas, Tandem, Lilly Diabetes, NovoNordisk, Dexcom, and Omnipod were also there. I'm sure I'm missing mentioning a lot!

After that, we were fortunate enough to get to see Crystal Bowersox perform live, and she really has the most gorgeous voice.

Day 2 started with a session by Dr. Desmond Schatz. His presentation was heavily dedicated to the urgency of changing the way the world cares for Diabetes. He had great slides and held my interest (which is not an easy feat!).

Some slides from that morning.

The next session I went to was 'How to Get Support Using Apps, the Internet, and Social Media'. I loved the panel for this session, as it was run by two of my favorite this people in the DOC (Diabetes Online Community), Kerri Sparling, and Scott Johnson. I look up to them as mentors, as well as friends, and I'm so fortunate for that. It was a fun discussion and I always love discussing social media for good use.

With Scott and Kerri.

Every year there is a Family and Friends Banquet with a different theme. This year was Country Jamboree, so it was a fun and easy one to dress for. We saw lots of plaid, overalls, and cowboy hats. During this dinner, one of my favorite singers, Raelynn, performed. I met her last year and met her the day before in the exhibition hall, and she is so kind. But what was even more exciting was sitting on the edge of the stage watching her perform her new hit album so close up. I even managed to grab a set list... I'm a 12 year old fangirl deep inside about many things.

Country Jamboree night, with Raelynn performing.

On Day 3, I went to a session called 'Supporting a Healthy Body Image', which I really enjoyed. I stopped and spoke to some parents of T1D teens after the session, and it was nice to be able to give my insight to them because I was that 14 year old T1D kid at one point.

Day 4. Last day. As most people are all packed up, we headed to the Farewell Breakfast, that was slightly more exciting this year because there were Disney characters. But like last year, this was the hardest part... saying goodbye to these people who you've barely spent any time with yet feel like family. Knowing you'll all be spreading out to your own little part of the world, far away from one another, until next year. And leaving that safe bubble that is Friends for Life. Where there are test strips everywhere, where no one has to ask what that weird device you're wearing on your arm is, and where everyone comes together and goes into this amazing little bubble for a few days. Because these are your people. They are the ones who know what it's like to have to be constantly monitoring your blood sugar, and giving the proper dose of medication with no one's help but your own. They are the parents of T1D children, who essentially have to work as their pancreas as a second job. They are the kids who have to be bribed to test their blood sugar or to treat their highs and lows... who are just trying to be kids. They are the ones who never get a break... yet somehow, Friends for Life kind of feels like our break. For all of us... kids, adults, and everything in between.

We love Minnie.

As this year wraps up, I want to remind myself that throughout the year I will have something important to look forward to next year. Something to give me motivation on those days I want to give up. Because a year really does fly by. Until next year, FFL.

Valued Voices Series #1 - Tori Anderson

The month of October is Dysautonomia Awareness Month, and my best friend happens to live with a rare form of Dysautonomia. In an attempt to bring awareness to Dysautonomia, and Tori’s specific fight, I decided to interview her. I hope you enjoy and find some inspiration in her view on the world, because she certainly inspires me every day. 

Michelle: Can you give us the short version of what form of Dysautonomia you live with?

Tori: So I have an autoimmune form of Dysautonomia called Autoimmune Autonomic Ganglionopathy. Basically, it is an antibody mediated autoimmune disease which attacks the nerve cells at the ganglia. The nerves that it attacks are part of the autonomic nervous system which regulates pretty much anything that’s automatic in your body.

Michelle: And how did you first find out you have AAG?

Tori: I got the formal diagnosis in August of 2014, but I really started getting sick back in 2012. Michelle: What kind of symptoms were you having?

Tori: I was having a lot of GI symptoms. A lot of vomiting, nausea, getting full too quickly, not really able to eat anything, losing weight, and that just sort of progressed really quickly into full gastrointestinal failure. And then not too long after that I started losing control of my other organs.

Michelle: So this is kind of a big jump from the last question, but you were quite a competitive gymnast before your illnesses hit, tell us a bit about that.

Tori: Yes. So I was, like you said, a competitive gymnast. I really started classes when I was 18 months, but I really started competing when I was 6-ish years old, maybe a little bit younger. And then I moved to Virginia and I was on the team for quite a long time, and then after I stopped competing competitively I still competed at a high school level and I even coached for a little while.

Michelle: What is the biggest assumption people make about you regarding your illness?

Tori: Honestly I think probably that the biggest assumption is that people think they can string those words together and become my doctor. And really that’s obviously not the case whatsoever. It’s really funny. People who haven’t really known me that long will insert themselves and decide that they’re my nutritionist, or my physiotherapist, or what have you, and decide they know exactly what’s going to help. But I think that’s probably true for most illnesses.

Michelle: What treatments have helped most to control your illness?

Tori: So I went through kind of a complicated treatment protocol. Originally we decided to go with the less invasive one, which is IVIG, which is an IV medication that is made to strengthen a person’s immune system, and it’s made from thousands of blood donors. And it’s given to the person to strengthen their immune system however it can have really nasty side effects, including meningitis. Not the kind that is contagious, not the kind that’s really often deadly, but it’s extremely painful for the patient and it is very scary. So I got aseptic meningitis after my first dose and I was very sick and I was in the hospital for a total of three weeks maybe. So after that my doctor was like “We’re definitely not doing this again”. So we looked at our other options which were some oral chemo, which I tried, and some oral steroid sparing agents which I tried, as well as some IV steroids which I tried. But nothing really quite helped. And then we decided to try what’s called Plasmapheresis, which is basically… You’re hooked up to a machine that filters the components of your blood, and it seperates the red blood cells, the white blood cells, the plasma, and the platelets, and it puts it in a machine that filters them out, and it gives you back your platelets, your white blood cells and your red blood cells, but it removes your plasma, because theoretically that’s where the tainted antibodies are. It replaces it with donor plasma, or donor albumin, the good kind. My doctors refer to it as getting an oil change. So I get an oil change twice a month and that actually has been the most beneficial treatment for me, although it is the most invasive and can cause a lot of problems, but it has been the one that has worked the best so far.

Michelle: What is a hobby you had to give up because of your diagnosis?

Tori: Definitely being active. I had to stop being so active. I had to stop gymnastics, I had to stop coaching. You know for a while when I was really, really sick I wasn’t able to do any activity whatsoever. I wasn’t able to walk long distances.

Michelle: And what is a hobby you took up because of your diagnosis, or because you couldn’t do the things you were doing before?

Tori: I got more into art, and writing. I’ve always been a writer, but writing and sharing, and I blogged for a little while, it became more of a passion. But then after I started to find a middle ground with my treatment and started getting a little bit healthier I was able to get into yoga. And although it is a form of physical activity, it’s also a form of spiritual activity, which I never really had much experience with in the past, and now I’m looking to become a registered yoga teacher, and it’s a huge part of my life today.

Michelle: What would you say to someone newly diagnosed with AAG or another form of Dysautonomia?

Tori: I would tell them that having a strong team of specialists that care about you and listen to you is of the utmost importance, that learning how to listen to yourself and your body, and what you need, is gonna be your ticket to the healthiest life you can live with this shitty-ass condition.

Michelle: What is your favorite motto to get you through hard times?

Tori: One of my recent go-to’s is “Bloom where you are planted.”. I like that a lot. A friend of mine actually gave me this picture frame. It’s a gold frame and it’s a picture of pink roses and in the middle it just says “Bloom where you are planted.” And it just kind of reminds me if you think of like in the spring, when the wind takes a seed and it blows it from it’s path or where it is sitting and it picks it up and throws it some random place, and it’s planted. And that seed technically has two choices- whether it’s going to just stay a seed and do nothing, or if it’s going to bloom where it has landed, and that’s so true for all of us. Life is gonna throw you some twists and turns, and it’s gonna throw you some curveballs, so you’ve just kind of got to learn to go with the flow.

Michelle: If you could tell the world something about AAG and Dysautonomia in general, what would you say?

Tori: I think just for invisible illnesses in general, like you, or anybody, cannot tell me, or anybody else, what they’re feeling. These illnesses, just because you can’t see them, doesn’t mean they aren’t wreaking havoc inside, and just because I’m upside down or I’m flipping around or I’m doing something freaking awesome, doesn’t mean that I don’t go home and suffer the consequences that are actually really, really hard to deal with. So it’s kind of like your cliché, “Don’t judge a book by its cover” kind of thing.

Michelle: Where do you see yourself in 5 years?

Tori: Oh shit… Where do I see myself in five years? You know if you had asked me that 5 years ago quite frankly I would have said dead. And that sounds really depressing, but 5 years ago before that I would have told you that I’d be in some branch of the military as a paramedic or a nurse or something like that so I really don’t know. I definitely hope to be a nurse. I really want to be a forensic nurse. But I’m learning to kind of ride the waves, because when you live with a condition like this you never really know what’s gonna happen. 

Tori Anderson lives in Richmond, Virginia with her two dogs, Remi and Rosie. Tori was formally diagnosed with AAG in 2014 and shares bits of her story on various social medias, spreading awareness for a large array of important issues. In her spare time, she volunteers with domestic violence and sexual assault survivors, and has aspirations of becoming a yoga teacher. You can follow her day to day on Instagram @vma2770.

You can donate to Tori’s fundraiser for Dysautonomia International by purchasing one of her shirts here: https://www.booster.com/dysautonomia-awareness-month-toris-team?share=4451475528106034&utm_source=facebook&utm_medium=social&utm_content=dysautonomia-awareness-month-toris-team&utm_campaign=mobile-post-launch-v2&ref=facebook_social_mobile-post-launch-v2&type=1&side=front



More information:
What is Dysutonomia? http://www.dysautonomiainternational.org/page.php?ID=34
What is AAG? http://www.dysautonomiainternational.org/page.php?ID=124