Wednesday, December 21, 2016

10 Quotes That Have Helped Me Get Through The Hard Days With Chronic Illness

I can openly say that I am a quote addict. I can browse through quotes on Pinterest for longer than I'd like to admit. And I find doing this a great tool for getting through hard times. Sometimes just reading a good quote that resonates with you gives you some perspective on things. So, without further ado, here are 10 quotes that have helped me look at things in a way that's gotten me through some rough times.

#1- "When it is all finished, you will discover it was never random."



















The idea of fate is subjective. The thought of everything happening for a purpose is subjective. But it has truly helped me to believe that every little thing that happens leads you to something else that is meant to happen in your life. For example... I attended college in a Professional Photography program for one semester before I got sick. It was a blip in time, and it turned out not to be what I want in life, but I truly believe that I was meant to attend for that one semester, because I met my best friend there. I don't believe it was random that we met on the first day of orientation for class. I believe that she is one of the soulmates I'm meant to meet in my life. I never say nothing came of that, or that I failed by having to leave, because attending for that one semester placed her in my life and changed it forever, and she became my rock throughout many years of my illness. 



#2- "There is purpose in your season of waiting." - Megan Smalley



















You are going to notice a slight theme with the quotes that have gotten me through hard times. It's the theme that there is purpose to the pain. That this pain isn't for nothing. Maybe one day I will use this painful period of waiting to help other people going through the same thing. Maybe in this season of waiting, circumstances will put me in a room with another person who I'm meant to cross paths with. 



#3- "Your story is unique and so, so different.. and not worthy of comparison." 



















This is a great reminder to stop comparing myself to other people. Everyone is on their own path and it's fine if your path is different. Our paths aren't supposed to be symmetrical. No one has lived exactly what you have lived, and it's so important to cheer each other on instead of comparing, and to know that what has happened to you is yours and no one can change that. It's not there for anyone else to compare or judge. 

 


#4- "I realized there is no shame in being honest. There is no shame in being vulnerable. It's the beauty of being human."



















When you suffer with a chronic illness, sometimes it feels like people expect you to be strong. People expect you to be able to handle whatever is thrown at you with grace. Sometimes it's hard to share your true feelings on your situation. Some days will be harder than others, that's a guarantee. And on those hard days, it's okay to be open, and honest. Anyone who judges you for complaining, or letting down your armour and being vulnerable, is not worthy of one second of your thoughts. The people who matter are the ones who have love in their hearts, and they will appreciate the human in you. 



#5- "They tried to bury us. They didn't know we were seeds." - Mexican proverb 



















I absolutely love this powerful statement. I look at the word "they" as life. Life may try to bury us, but we will grow right through the soil it throws on us. This quote is a powerful reminder of our strength and resilience as humans. 

 

#6- "Where you are is not who you are. - circumstances" 



















Such an amazing reminder that what has happened to you in life doesn't dictate who you are. The way I see it, the fact that you may be stuck home with no job, or out of school, doesn't make you less wise, or lazy. Those are your circumstances, not your characteristics. Maybe you're funny, or maybe you're generous and kind. Maybe you're a singer, or a writer. Maybe you have a love for animals, or a passion for volunteering. Maybe you love comedies or maybe you love scary movies. THAT is who you are. This tells me that I am not my illnesses. I am made up of the traits I have (the good and the bad), the things I love, and the things I feel passionate about.  


 

#7- "Even if you shake, a step is still a step. Continue to be brave enough to walk your path." - The Better Man Project



















Sometimes I feel like giving up. Sometimes I feel like I can't take another second, as I'm sure a lot of people can relate to. But when I make that tiny decision to keep going, that is a step. It doesn't matter if you waver, so long as you keep going. 




#8- "Trust the wait. Embrace the uncertainty. Enjoy the beauty of becoming. When nothing is certain, anything is possible."



















How true is this last sentence? "When nothing is certain, anything is possible." Uncertainty sucks. I am a person who likes to know all the facts. The unknown puts me on edge. But this thought, that not knowing and being uncertain isn't so terrible, and that things beyond your wildest dreams can happen, helps me get through these days. 




#9- "So, do it. Decide. Is this the life you want to live? Is this the person you want to love? Is this the best you can be? Can you be stronger? Kinder? More compassionate? Decide. Breathe in. Breathe out and decide." - Meredith Grey (Grey's Anatomy)



















Having a chronic illness, a lot of the time it feels like nothing in your life is in your control. And it's a horrible feeling. I absolutely love this reminder that although some things are out of our control, there are still choices we can make. We still have power over our lives, and if we don't like where we are, we can figure out if there are things that we can change to make us happier, or to make us a better person. There is always room to grow.



#10- "So, what if, instead of thinking about solving your whole life, you just think about adding additional good things. One at a time. Just let your pile of good things grow."



















Speaking of growing, I love this idea of just letting your pile of good things grow. It is so easy to worry about the rest of your life. Especially when it comes to chronic illness. I go to that place of worry all the time, and feel like I need to figure everything out. But if we focus on just adding things into our lives that make us happy, and add them in one at a time, as slowly as we need to, things will change for the better. It's impossible to figure out your whole life in a day. But it definitely isn't impossible to slowly add in things that you make you smile, even if it's for a second.

Monday, December 12, 2016

A Letter to My Friends With Chronic Illnesses



To my friends with chronic illnesses,

We met for one reason; our bodies don’t work the way they should. We’re all fighting different battles, but at some level we just get each other. We know what it’s like to be confused as to why our bodies are failing us at such a young age. We know what it’s like to be poked and prodded, and have test after test done, sometimes to reveal something awful, and sometimes to reveal absolutely nothing. We know what it’s like to watch our peers grow up while we’re stuck stagnant due to our health. We know what it’s like to miss out on fun things that we should be getting to do. We know what it’s like to feel helpless. We know what it’s like to have far more medical knowledge than we should. We know what it’s like to have an unpredictable future due to the nature of our illnesses. We know what it’s like to have to advocate for ourselves to doctors. We know what it’s like to leave appointments in tears.

There’s a reason why we get along so well. It’s because we’ve felt a particular type of pain that many haven’t felt. Maybe we look at life a little differently since we’ve been sick, because now we really have to focus on where we want to spend the little energy we have. We have to focus on who we want to spend that energy on. We celebrate tiny victories that to others would seem laughable, but to us it’s an accomplishment.

I want you to know that I am proud of you. I am proud of you for waking up everyday and fighting the same illnesses that left you so tired the night before. No, you didn’t choose to get sick. Who would? You don’t have to be an inspiration, and you don’t have to be brave. But either way, I am proud. Because none of this is easy, and you’re still here to fight another day. Every day might not be a good day. Some will seem impossible to get through, whether it’s the awful symptoms, the side effects, the isolation, or just the mental anguish that comes with being stuck in a body that you want a refund for. But together we are so much stronger. We will lift each other when one of us falls. We will keep each other company on those nights that our symptoms are keeping us up. We will celebrate all the victories, big or small. From far and wide, and all across the globe with a unique bond, we will love each other through it.

“People like us we’ve gotta stick together.”

Thursday, December 1, 2016

Laparoscopic Excision of Endometriosis


This week was finally the week of my surgery. A laparoscopy to look for endometriosis and to cut out whatever endometriosis was found. Being my first real surgery, I was nervous. Nervous is probably an understatement.

I collected as many tips and tricks as I could prior to the date from other women with Endometriosis who have undergone several laparoscopies. I heard the same tips repeated several times, and they were definitely right. I was told to go to the pharmacy and pick up some Gas-X and that I’ll be happy to have it. That was definitely right. During the surgery, they inflate your belly with gas so they can see around the organs more easily. It’s impossible to get all that air out after so it tends to get stuck in your abdomen, chest, and shoulders. While the gas never quite reached my shoulders, I felt it in my chest, so the Gas-X was super helpful. The second great piece of advice I was given was to SPEAK UP. I was told that if I’m feeling really anxious, tell them, and they will give you something for it because they want you to be as comfortable as possible. If you’re nauseous, speak up, they have meds right there ready to give you. I was also reminded not to leave without a prescription for pain meds, nausea meds, and Colace.

With all these tips, I was ready to go. I was the first surgery of the day so we had to be there by 6:30 AM. I was understandably nervous, but I have to say, the nurses, the anesthesiologist, and of course my doctor and surgeon were all so comforting and kind. Those are the things you don’t forget.

When I woke up, it took me a few minutes to figure out where I was and what happened. Once I was less out of it, my doctor came to talk to me, and told me what they found, which was a large patch of endometriosis on the back of my uterus that they cut out. We follow up in a few weeks once I’m all healed to discuss how we’ll proceed.

I am so grateful for this doctor, for her kindness, for finding an answer to some of my pain, and for just existing. She happens to be an endometriosis specialist, and I found her by complete fluke. Some things are just meant to be.

Post-op, things have been going fairly well. I had really built it up in my head that it would be awful, so the recovery is ending up going much better than I had anticipated! Nothing can happen without some complications, so on Day 2 post op, I started going into urinary retention. I could barely get anything out. We figured out that the pain medication I was prescribed was the culprit so I stopped it and now my bladder seems to be slowly recuperating. I’ve been experiencing lot of bloating, actually 4 pounds of bloating and water retention, so I’m hoping that will go down ASAP.

All in all, I haven’t bounced back yet, and am not feeling quite myself, though I know it’s only 2 days post-op and I’m hoping I’ll bounce back soon. You can just call me the queen of impatience. :)


Saturday, November 19, 2016

Why Waiting is the Hardest Part


 











To any doctors out there,

I am someone's daughter. I am someone's granddaughter. I am someone's sister. I am your patient. When you meet me, maybe you don't know that I've been searching for answers for 4 years. Maybe you don't know that I've seen countless doctors who have left me hopeless. Maybe you don't know that 4 years of my life feel wasted due to being unable to work or go to school.  To you I might just be another patient with weird complaints. You have so many patients, and some of them have life-threatening emergencies. While my illness is progressive, it's proven not to be deadly. Therefore in the healthcare system it's no rush. But to me, it's a rush. It's urgent. I fear for how many more days of my life will have to pass me by before I am able to get any sort of treatment. Because to get treatment, you need answers.

As a girl in her young 20s, I've seen a lot happen in the last 4 years. I've seen friends graduate, I've seen friends move into their first apartment.. I've seen life pass by me as if it were on fast forward and slow motion at the same time. I mourn the years of my life that have gone by so quickly yet so painfully slowly. I mourn all the things I've missed out on doing. I mourn the future, because I don't know how many more years it will be before I get the help I need to thrive. I don't know how much worse I'll get before answers are found, and I don't know if it will be reversible. So yes, to me it is a rush. To me it is an emergency. Please understand that. 


I know you cannot put yourself in my shoes. I know you cannot feel the ataxia I'm stuck with, or my tremoring hands and tongue. I know you can't feel my legs shaking under me as I walk. I know you can't feel what it's like to be 23, and 4 years into this mess that has put my life on a long hold. But please. Try to imagine. And try to understand why to me, after my young twenties have almost passed me by, this is urgent.





Tuesday, November 15, 2016

World Diabetes Day 2016



November 14th was World Diabetes Day, but for us Type 1 patients, it's every day. Today I want to talk about the people we don't necessarily see or always think about. A Type 1 diabetic needs insulin to stay alive. No ifs and or buts. They will die without insulin very quickly. In developing countries, access to insulin is often impossible, and if it is accessible, will take up a family's entire weekly income. Consequently, according to the International Insulin Foundation, children with Type 1 in developing countries can have a life expectancy as short as a year. I am so grateful to have access to this ridiculously expensive liquid that saves my life every day, and today, I think of those who are not as lucky. Of those who deserve this medication just as much as I do but can't get it. Of the children who will die because of it. And I hope for a future where everyone has access to insulin. Because having to give 7+ injections a day is a curse. But being ABLE to give myself those injections is a blessing.

Thursday, November 3, 2016

10 Ways Having a Pet Helps Me Get Through The Hard Days With Chronic Illness

1. When I’m coming home from a hard appointment or a hospital stay, I know he’ll always be there to greet me.



2. Animals can sense when something is off. They are so in tune with their humans. I can recall so many times when I’ve had tears rolling down my face and my cat has come and plopped himself down on my chest and nuzzled my face.



3. They’re hilarious. Each has its own set of quirks and weird habits that can’t help but give you a few laughs.



4. They never judge. Whatever crappy decisions I’ve made that day, no matter what I look like, no matter if I have mascara all over my face and haven’t washed my hair in days, my pet’s love never wavers.


5. They teach you to find joy in the little things. Like a cardboard box.. Or a string… Or the simple throw of a ball.



 6. Chronic illness of any kind is isolating. There is no doubt it will have some sort of impact on your social life. With your pet, you’re never alone. You have built-in company.







7. Since maybe you don't get out as much as you'd like to, they give you something to take pictures of. You've become their personal photographer.



8. They keep you moving and provide endless entertainment. Even if you can’t move around much, your pet will surely find some way to keep you busy.





9. Your pet can potentially support any special needs of yours. Whether you need a service dog for mobility, a seeing eye dog, or a dog to help you with tasks that are hard for you. For example, a diabetic alert dog notices subtle changes in the chemicals in its owner’s body when their blood sugar begins to drop or rise and will notify them and prevent dangerous hypoglycaemic episodes. An emotional support animal (ESA) is a companion animal who provides support to its owner who has a physical, psychiatric, or intellectual disability, but does not do any specific tasks for them. These are different from service dogs. The point being, these pets are so incredibly special, they put your life before their own. Pets are the best medicine and can be a huge aid for some people.





10. When you feel like you just can’t face another day, you wake up in the morning and see their face so excited to see you, and you remember why you’re here.


Saturday, October 29, 2016

Lauren's Hope Medical ID Bracelet - A Review






I am so excited about my new medical ID bracelet I just received from Lauren's Hope. Choosing one was practically impossible and took me days because there are so many gorgeous options. My struggle was choosing between the pretty rose gold choices and the classic silver ones. I couldn't decide whether I wanted a pink themed bracelet or a blue themed bracelet and spent far too long making a decision since decisions are admittedly not my strong suit.

In the end, I decided that since winter is upon us I'd get a wintery looking bracelet. I went with the Alice Bracelet, which is silver with gorgeous strands of white and grey beads. A cool feature of this site is that you can choose a custom tag to add to your bracelet. I chose this geometric turquoise design and am so pleased with how it came out. They ask for a snug measurement of your wrist and size it perfectly. Not only is it stunning, the engraving on the back is solid and easy to read. My bracelet also kind of reminds me of Elsa from Frozen, which of course makes me happy.




There are a couple of things I'd like to say about Lauren's Hope Medical ID Jewelry.

First, I have seen many medical ID bracelets on Etsy and elsewhere, and what stopped me from purchasing one of those was that they just didn't look like Medical ID bracelets. They were very appealing, but they looked like they'd blend in with all the rest of your jewelry, and if a paramedic were to look for an ID bracelet, I wasn't sure that they would even notice it. At Lauren's Hope, they've managed to keep the large medic alert tag and still make it so beautifully dainty and pretty. But with this one, I know it will be obvious to any medical personnel that it's a medic alert bracelet.


Second, there is a genius feature to these bracelets. There are clasps on both sides of the tag. This makes it easy for a lefty or a righty to put it on! It also makes it possible for you to mix and match, and switch around either the bracelet, or the tag, if you need a new one due to updated information.

All in all I can say I'm in love with my bracelet and would highly recommend Lauren's Hope to anyone who should be wearing a medical alert bracelet.





Wednesday, October 26, 2016

Valued Voices Series #2 - Kerri Sparling





This past week I had the privilege of interviewing one of my idols. Kerri Sparling is a well-known and impactful blogger in the diabetes community, and I was lucky enough to get to see her speak on multiple panels at the Friends for Life conference this past summer. I knew right then and there that I pretty much wanted to be her when I grow up.



Michelle: Hi Kerri! Thanks for taking the time to chat with me! So first I’ll let you introduce yourself.
Kerri: So my name is Kerri Sparling and I’m talking from my home office with my 7-week old son on a little bouncy chair on the floor and my 6-year-old off at school, so my life is very centered around my children, but I think you and I have connected more because you know me through the Diabetes stuff. So I’ve had Type 1 Diabetes since I was 7. I have marked 30 years with Type 1 this past September, which feels like a huge fat milestone.
Michelle: That’s a huge milestone.
Her son coos in the background.
Kerri: I know, my son was like, “wow!” I’ve been writing a diabetes blog, www.sixuntilme.com, since 2005, so I got in on the whole blogging thing before people even knew what a blog was. I didn’t even know what a blog was, it sounded like a weird word.


Michelle: What made you start blogging about Type 1 in the first place?
Kerri: I had no friends who didn’t make insulin! I thought that was so sad! It was the saddest thing ever!
Michelle: That is pretty sad.
Kerri: It bummed me out because I live in Rhode Island and it’s a real state, but it’s not the biggest state, and we don’t have a huge network of advocacy organizations, so I wanted to find people who were living with diabetes, and not just having it like everyone’s old aunt or their dead grandmother. I wanted to find people who were, you know, in my age range and doing the stuff that I was doing, and living with it, not dying from it. And so that’s what spurred me to start the website, I wanted to find my kindred spirits.

Michelle: Did you ever imagine that your blog would become so successful?
Kerri: No! I think it’s weird!
Laughter ensues.
Kerri: Cause I’m not saying anything that other people aren’t already thinking or experiencing. I think it’s that storytelling sort of thing, I know I was one of the first bloggers but it’s been really cool to see other people go, “Yeah I want to share my story.”, and then when they share theirs and I get to connect with them with mine, the network of people that I now know that don’t make insulin grows and grows and it feels, I don’t know, like there’s a community that I can base my hopes on instead of all these Google search returns where I feel like I’m basing a bunch of fears on.


Michelle: Okay, I have a good one for you. If you could only have one thing to treat low blood sugars for the rest of your life, what would you pick?
Kerri: Oh my god, candy corn. People think they’re disgusting but I would live and die by those things. They’re so nasty and so little and you eat about 600 of them in about a 5 second span. So as far as structured glucose tabs, a friend of mine makes the GlucoLift glucose tabs and I
think they’re the best structured treatment on the market. They taste good enough that you eat them but not so awesome that you eat 10,000 of them.

Michelle: If you had to have a day with multiple high blood sugars, or multiple low blood sugars, which would you pick?
Kerri: It kind of depends. Right now after discussing candy corn, the idea of a day of a bunch of lows kind of sounds appealing, because I have a whole unopened bag of candy corn in my kitchen, so that sounds kind of awesome. But I guess because I’m the parent of two small children and I work from my house and I have lot going on during the course of the day, I feel like highs are easier for me to fake it through, versus lows, they really pull me out of the game and can set me back for several hours. So, for productivity, I would probably pick highs.

Michelle: What’s your go-to motto or quote when things get hard?
Kerri: I kind of stick by the whole “Diabetes doesn’t define me, but it helps explain me.”, not because it’s the trademark tagline on my blog, but because it applies. Like when things get crappy whether it’s diabetes related or not, it’s nice to think that this thing that weighs on me so heavily disease-wise, and I mean you do it too, all the stuff that we do day in and day out, it’s not the core of who I am. And reminding myself of that makes the daily tasks a little less arduous and irritating and more “I'm A-okay, this is just what I have to do.”

Michelle: What is the most exciting thing for Type 1 advocacy that you’ve gotten the chance to do?
Kerri: Well there’s two things. The first is for the short game and the second is for the long game. So for the short game I’ve been really excited to be on the front lines of hearing about Ed Damiano’s bionic pancreas, the iLet mechanism, where he’s working towards the dual hormone system and I’ve met his team and I’ve seen his prototypes, and he and I have talked quite a bit, and it’s really exciting to see someone actually putting their money where their mouth is. They say that they want to get good blood sugars all the time and he’s actually creating something that produces that for his kid, and for us. And I just think that’s incredible that that could actually happen before I’m too old to enjoy it. So that’s the short game. And I think the long game thing that I’m the most interested in, and the most proud of, is being part of the community. So years ago, when you put ‘diabetes’ online, you got all those bad search returns, all those nasty things, and I feel like through the stuff that I’ve done and the stuff that a lot of my peers have done, that we’ve helped move forward the conversation. No, it’s not just blood sugars, it’s not just A1Cs... It’s about a mental health component, it’s about co-morbidities, it’s about other chronic illnesses that you may be living with, it’s not just existing in a vacuum, it exists in the context of someone’s real life. And I feel like all of us who are sharing our stories help kind of flush that out for people for ourselves and for people who don’t really have a strong understanding of diabetes. We’re helping paint a better picture of what our disease is like for these people who assume it’s because we eat too many cupcakes, and that’s kind of badass.


Michelle: If you could tell the world one thing about Type 1, or about life with Type 1, what would it be?
Kerri: We make it look so easy! And it’s not easy! People have a perception that we just take a shot or take a pill or avoid sugar or whatever it is that they think is the one thing that we do, and they don’t see all the minutiae of management. So we make this look way too good. 

Michelle: Do you ever get tired of talking about diabetes?
Kerri: Yeah! Of course! It’s boring sometimes. And then sometimes when it’s the least boring you don’t really want to talk about that either. I don’t like that it’s such a pervasive thing, but there is a lot of therapy to talking about it. So not keeping all my thoughts about it or my anxieties, or my successes with it bottled up, just to help me manage the mental health aspect of things. 


Michelle: What would your advice be to someone who was recently diagnosed?
Kerri: There is life after diagnosis. Cause I feel like when you get diagnosed you get that whole list of crap you can’t do anymore, and they never hand out a list of all the things you still can do. So I would want people to understand, whether it’s their kid or themselves, that there’s a whole lot more to life than just the diabetes and you will still be alright. Because it never seems like it in those first few months or years I’m sure.



Saturday, October 22, 2016

Why Audrey Hepburn Was Wrong When She Said Happy Girls Are The Prettiest





“Happy girls are the prettiest”, is something Aubrey Hepburn once said. I’ve seen this quote numerous times over the years. On posters, on t-shirts, on the Facebook pages of girls who have shared it. And each time I felt a pang of sadness and self-consciousness while reading it.

What does this quote really say? When I read it, I see more than one thing. I see “Be happy because you’ll be prettier.” I see “People who are unhappy are not pretty." I see “Depression is unattractive.”

Mental illness is not a stranger to me. Depression has dragged me under its heavy wing for months on end over the last 8 years. I have felt the pain of feeling like there is no way to escape your tortured mind. I have been smothered by that feeling night after night. Over the years, I’ve watched friends close to me struggle with depression. My beautiful friends, who have fought through so many things, and stand with bravery and strength, are some of the prettiest people I’ve seen.

As a teenager, when I first saw this quote, I thought to myself “Oh, but no matter how hard I try to be happy, it doesn’t work, so I guess I’ll never be one of those pretty girls.”  It breaks my heart to think of any teenagers thinking this way right now. Depression is a monster. Depression doesn’t give you a CHOICE to be happy. When the chemicals in your brain are off, it is not your fault, and it certainly doesn’t make you ugly. Some of the most beautiful people I know are those who have known more pain than one person should endure, and are still standing tall. Some of the most beautiful people I know are those who fight the same demons every single day that leave them feeling exhausted and powerless, and wake up in the morning ready to fight them again. 

So if you are one of those care-free, happy people, that's amazing, and you're beautiful. And if you're fighting a deep battle with depression and can't escape the darkness but still show your face to the world every day, you're beautiful, and you're a fighter with a story to tell. Just because you're fighting a battle that others may not understand, it doesn't take away from your beauty.

I prefer this quote by Elisabeth Kubler-Ross: 

 “The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.”



Wednesday, October 12, 2016

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.



 

Friday, October 7, 2016

6 Things Not to Say to Someone with a Mental Illness and Alternatives






 This week (October 2nd-8th) is Mental Illness Awareness Week. Here are some things you probably shouldn't say to someone struggling with a mental illness, and some alternatives instead. 



1. “Just try to be positive. Positivity is key.” I can assure you that the large majority of people who suffer from a mental illness, whether it be depression, anxiety, or a mood disorder, have tried to look on the bright side. They have tried to be positive and think happy thoughts. Unfortunately, it doesn’t quite work that way. Usually, thinking positively cannot beat a chemical imbalance in your brain. The thing is, is that mental illness is just that… an illness. It is not a frame of mind. It is not a negative attitude that can be fixed with some ‘kumbaya’. It is a true chemical imbalance that is no fault of their own. Telling them to be positive is kind of like telling them they’re being negative. That is the last thing someone fighting a mental illness needs to hear.  They’re doing the best they can.

2. “Just get off of your antidepressant/birth control pill/whatever crap you’re taking and you’ll feel so much better” This is a problem for multiple reasons. The first being that everyone is different. While an antidepressant might not have worked for you, and may have made your situation worse, that same antidepressant can be lifesaving and life changing for someone else. While a birth control pill may have contributed to your depression and caused you other problems, that same pill may be saving another woman from the horrid delusions she gets around that time of month. Maybe you ditched your antidepressants and became one with nature and everything became great. And we’re happy for you, seriously. But if some of us decide to go off our antidepressant, it might not end in the same great way it did for you. It may end up with a trip to the emergency room. Some of us need these medications to function, and to stay alive. The second problem with this, is that by telling people they should get off their medication, you’re making them feel ashamed for needing their medication. You’re making them feel like they’re doing something wrong by being on one of those medications. And they need to know that they’re not in the wrong at all and that they deserve to use whatever tools they can to fight this. They also need to know that taking medication does not make them weak.

3. “Yeah I’ve had similar problems, I just didn’t let them control me.” If you had similar problems and were able to just not let them control you, then your problems probably aren’t so similar. Because that’s the thing about mental illness. It does try to control you. It wraps onto your every thought, your every movement, your every breath. It affects every day, every relationship, and every word that comes out of your mouth. Recovering from mental illness is not as simple as just not letting it control you. If it was like that, most people would be in recovery. People with mental illness are not just allowing their illness to control them. They are not choosing to be taken down by this monster. They have no choice, but they’re doing their best to get through every day.

4. “There are children starving in Africa, think about how good you have it.”  Yes... Yes…  They are aware of the children starving in Africa. It hurts them deeply that children are starving, and they are very grateful that they have a roof over their head and a full pantry. However, that does not magically take away their debilitating mental illness. It also makes them feel like their suffering is invalid, and that they don’t have a right to be struggling.

5. “Have you tried exercise, or eating healthier?” Yes, it is true that exercise or healthy eating won’t make things worse. Mental illness or no mental illness, living a healthy lifestyle is always a good idea. However, this isn’t what someone who is suffering deeply wants to hear from a supportive friend. While I’m sure this suggestion comes from good intentions, when someone is on the brink of suicide, exercise is not going to fix that, and hearing that suggestion might make them feel like you think their problem is trivial. It also might make them blame themselves, for not being active enough or being a healthy eater.

6. “You seem great, are you cured?” Firstly, mental illness has no cure, and it is something that will likely always linger in the background, no matter how far into recovery a person is. A person may be doing great, but for example, someone with Bipolar disorder will always have Bipolar disorder.  They might be in a great place where they have a lot of control over their illness and it’s not such a factor for them at the moment, but it isn’t something that will ever completely go away.  Secondly, people with mental illness tend to get pretty good at a little thing called acting. Someone can be a complete wreck at home and put on a complete mask when they go outside. You never know what is happening behind closed doors.



Instead try these…


1.“I’m here for you.” Just a simple ‘I’m here for you’, to let them know that you care, and that they aren’t alone, can mean a million words. Let them know you aren’t going anywhere.

2. “Is there anything I can do?” The answer will usually be no but you never know. Maybe they want some company, or someone to come to their errands with them. Just offering the knowledge that you’re willing to help is helpful in itself.

3. “You mean so much to me.” It is so easy to feel isolated and worthless when dealing with a mental illness. Telling a friend how much they mean to you can really put a smile on their face, because sometimes they forget.

4. “It’s not your fault.” Remind them that they aren’t choosing to feel this way. Remind them that mental illness is a real, and ugly monster and that they’re a badass for living with it every day.

5. “That is so crappy.” Just letting them know that you sympathize with them and validating what they’re feeling can make a difference. Let them know they aren’t overreacting and what they’re going through is really difficult.

6. “You are brave.” Remind them what a badass they are for living every day with this illness.  They may not have a choice, but they are still here, and you are grateful you get to have them in your life.