Wednesday, January 27, 2016

Mental Health and Chronic Illness

It's #BellLetsTalk day about mental health, and I've already posted about my experience with depression but I wanted to share more about how my physical health also has a huge impact on me and how I want to make this easier for other kids like me.

It's been almost 4 years since I had my first onset of a Crohns Disease flare. In reality, I'm still on that "first" onset since I've yet to achieve remission status. In 4 years I went from being an active kid who was always wanting to be on the go somewhere, to someone who rarely feels they have the energy to leave the house (at least much of the time). My entire life has changed. I can no longer participate in Scouting activities that I really enjoyed, I rarely have contact with my school friends since I've been too sick to go. I haven't had a birthday party in 3 years, and since I'm not at school, I rarely get invited out with friends. I've spent many of the past 2 years worth of holidays at the hospital. Over such a short time, my life has turned upside-down.

I'm completely aware of my medical situation. I know that I've exhausted my medical options for the moment and that how I'm feeling right now might be as good as it gets. I get angry at the disease, at what it's taken from me, and the treatments that I have go through because of it. I've had tears adjusting to living with tubes and bags hanging off of me. I've asked "Why me?" and go through periods of being jealous of my other "normal" friends at school who are living "normal" lives. I will never live a "normal" life in the sense that most people would consider normal. I've had to accept that my normal involves machines, blenderized meals, and medical equipment like my dancing IV pole partner.

I knew that I couldn't let this disease define me, that I needed to take all the negative that had been thrown at me and create something beautiful from it. When I first walked into the outpatient treatment rooms at the hospital for my first Remicade IV treatment (often an 8 hour day), I was scared and worried that this treatment too would fail. I remember walking into the room and being completely shocked at the emptiness, the lack of color or interesting distractions. I felt like I was walking into more of adult clinic instead of a major children's treatment facility. It was depressing. You felt a heaviness just walking through those doors. Let's face it, medical stuff is scary. As a child when you are looking at the thought of having to do these treatments regularly, it can be downright terrifying.

I decided to do something about this. I know from my time in other parts of the hospital, that having a supportive and engaging environment can make a huge difference in the physical healing and mental health of patients. I decided that the environment for the outpatient treatment rooms needed to change to help give a boost to kids' spirits and help to encourage healing. Jacob's Healing Rooms is going to help update the treatments rooms to make them child-friendly places of healing. I'm going to install tablets at each treatment chair, have the walls painted, distracting sky-panel covers for the lights and a sensory bubble tube machine in each room to distract and liven up the environment. I may not be able to make the disease go away, but I can help to make a difference in the lives of other sick children needing these treatments too. And in turn, that makes me feel like I'm making a difference, that I'm needed.

Today might be #BellLetsTalk day but let's not forget that the struggle that people living with mental health and chronic illness face is very real each and every day.

Mental Health and Me

Today is #BellLetsTalk day, a day to become more aware of the mental health issues people live with every day and how we as a society can make it better. In honor of today, I'm going to post about a very difficult time that I struggled through which is still very difficult for me to talk about.

I am a survivor. At the age of 7-8, I felt like I wanted to die. A person close to me in my life in a position of trust who was supposed to love and care for me, didn't. Every time I did something wrong, I'd be left wondering "What's wrong with me? What more can I do to make them happy?". I began to see, or at least really believed, that I was to blame. I felt like there was something unlovable about me and I felt worthless. I felt like I had nothing of value to say or to contribute. I couldn't make a choice because I'd have to stop and analyze the "consequences" of each choice, whether it could possibly get me into any more trouble. I began to feel so paralyzed by wanting to make others happy and avoiding making any mistakes so that things wouldn't get any worse. I felt that if I were "perfect" that I could make others love me and that by being perfect it was the only way that people would ever possibly even like me. I was lonely, miserable and felt that if I wasn't here on Earth it wouldn't even matter.

It's been a long road back. The problem with mental health "problems" is that they're often complicated to treat and recovery takes time. There's no magic pill out there that's going to make me forget what it felt like to go through this. Reaching out to others, finding "spirit lifters" and focusing on getting to know who I am again have been the biggest key factors in my recovery. Despite the bullying at school that I continued to experience for a year or so after this, I slowly started to see that I had a choice to make: I could either let this experience define me negatively and either give up or turn into a bully myself, or I could use the experience as an example of what not to be. I figure I have a long life ahead of me, so I chose the positive choice.

Since this time, I've also been diagnosed with Post-Traumatic Stress Disorder. Yes, even a child can have PTSD. I can't handle negative confrontations really well without having a flashback. So sometimes when I'm playing multi-player online games and someone starts saying something bad to me, it can trigger the memories. I still feel this need to make my work perfect, but I'm also learning that mistakes are also learning experiences. And, most importantly, I no longer wake up dreading being alive each day. I know that I matter, I make a difference. I know that I'm here for a purpose; to be a change maker.

What would I say to another young person living with depression and thinking about death as an escape? Hold on and don't give up. Right now might be a really dark time, but even though you can't see it there is hope out there. There are kind people out there that are just waiting to meet you. Even when you feel that there is absolutely no one, it's not true; I care. I want you here on Earth because you can make a difference in someone else's life, you can share your story of survival.

Monday, January 18, 2016

The Curling Community and Me

I'll be the first to admit it proudly; I'm brains, not brawn. Not that I'll never be brawn or anything, it's just that 3 years of being extremely sick have led me away from sports. If I can't walk across a field without feeling like my heart is going to explode, I'm pretty sure most sports are going to be crossed off the list...for now.

Something strange has happened though. Something wonderfully, delightfully strange and awesome has happened.

Sports has touched my life in another very unexpected way. It all started because my grandfather, an ice-maker for a curling club likes to brag and tell stories about me. First he told everyone he met how, when I was out of medical options for healing my colon, I donated it to research. Then he would carry on the story of how I've crossed the line into the Operating Rooms 15 times in 3.5 years. He talks about how I'm out of options to treat my severe Crohns disease. My experiences have left him way too many stories to tell.

But the story he shares the most often is how I decided to make a difference. How I decided to take my disease, and all the "crappy" things that go with it (no pun intended!), to change the experience for other kids. It's the story of Jacob's Healing Rooms.

The curling community has given amazing support to Jacob's Healing Rooms. Last June, the Ladies Division of the Leaside Curling Club hosted their annual golf tournament in honour of Jacob's Healing Rooms. They raised a shocking $3600 which was a really great start to getting the project off and running. This was also the start of my public-speaking, and I remember being so worried about what other people would think, or how they would react when they saw me with my NG feeding tube hanging out of my nose. The ladies made me feel at home, and I was able to share with them the importance of an encouraging, supportive environment on healing.

Next, it was time for the Whitby Curling Club to get involved, and through their collections was able to collect $625. I was super-excited to be able to deliver my first "freestyle" speech after forgetting my prepared speech at home. I loved being able to share my experiences so openly with the members, to build some awareness of what kids like me go through. After-all, we could be the next generation of curlers.

Last, but certainly not least, the members of the Oshawa Curling Club, plastered my article around the club and had a donations jar that members were reminded frequently was "available for your spare change". All of this "spare change" together, added up to $711 which was presented to me for my birthday in December! The thing I like most about "spare change" is what it represents; spare change to create positive change. I was able to talk to the members of the Oshawa club this past week all about change and how if we don't do anything, change won't happen. Such an important message that we all can learn from.

The curling community has done so much to help me out, and I can't begin to express what it means to me. As I said, I'm not a curler. I understand the sport but have never played. But what I can tell you from my experiences so far, is that curlers are full of heart. They are full of compassion and acceptance. They have forever earned a spot in my heart.

Friday, January 15, 2016

The Lovely World of Side Effects

To say I haven't been feeling like myself this week would be a great understatement. Kind of like saying that the Grand Canyon is "deep", it just doesn't do justice to the description. But first, the backstory...

So last Thursday I had my monthly scheduled check-in with GI, not to be confused with my weekly check-in with GI because of the other little hurdles that come up in between... Of course the main topic of conversation, as it has been for over the past year, has been the nausea and vomiting. I've been taking Ativan used off-label to help with those symptoms, and while effective at first, it's been slowly losing it's effectiveness. The doctor decided to try a medication called cyproheptadine on me, as it can be effective for cyclical vomiting.

This week has been a constant whirlpool struggle. I break down into tears, feel so sad, angry and confused all at the same time. I'm muddled, befuddled, and muzzy. But just as easy as the tears come, all of a sudden I feel on top of the world and excited about the newest scientific breakthroughs. But then, I drop down again and it feels as though the world is on top of me. And this cycle repeats itself several times a day. Clearly something is wrong, and since it all started with a new medication, I'm putting my money on it being a reaction to it. My doctor has asked that I continue with it for another week, to see if it's just an adjustment period or if it's due to the weaning of the Ativan. All I know is that it feels at times as though I'm in a state of complete blackness that I don't know how to escape from.

So I'm hanging on, hanging in, and refusing to hang it up. I'm shedding my tears and warming my heart with love and hope. Tomorrow might seem like so far away, but that's alright, because I can hold hope that the next moment is going to be better. This is how things are right now, but it won't always be that way. I just have to remember all of that during those dark moments. I need to remember that it's ok to cry, it's ok to feel bad, and even the strongest of us have our moments of weakness. And that's ok too.

Monday, January 11, 2016

From Bullying to Friendship: A Story of Positive Change

Confession Time: I used to hate school. I'd wake up in the morning dreading going to school for the day. It wasn't the work, I love learning. It was bullying that started to make me dread leaving the house. I'd go to school and try to "walk away", "ignore", and all the other things adults tell us that we should do. I'd start each day telling myself that I could be strong, that I could get through it, but 10 minutes into the day, I'd already be feeling broken-down, lonely and sad. I talked to the teachers about it, but it didn't change anything. I'd still be made fun of, I'd still have tears forming in my eyes, I'd still feel really hurt inside. Each comment was attacking who I was, making me feel like I was wrong for just being me, for just being alive. And then my medical problems started. Soon, instead of just being made fun of because of my learning disability, or my giftedness, I was being made fun of because of the extreme weight gain from the steroids. It was difficult being called names, told that I look like a "fat lady", or have nasty comments about my weight and animal sounds being made. Here I was with a brand-new diagnosis that I'll live with for life, something completely out of my control, and being picked on because of it. I'd come home and cry, and the cycle would continue each day.

But then something happened...

Starting in grade 5, my classmates started to understand that I was really VERY sick and they would write me little notes sometimes to let me know they were thinking of me. I started to have a lot more absences until in grade 6 when I basically missed most of the year. I thought for sure my classmates would forget about me since I wasn't there. My teachers have done a really good job at making sure this didn't happen. In fact, now when I go to school I have so many people saying hi to me at once that it's overwhelming. In a good way. I no longer dread going to school, my classmates have become amazing supporters on my journey. They are eager to learn about my medical condition and the medical appliances I have (ostomy, GTube, sometimes a heart monitor), and love hearing what I've been up to when I've been too sick to go to school.

Today something amazing happened. Aside from the fact that I went to school I mean. Today, my teacher handed me a special folder of cards, drawings, activity booklets and messages that my friends have put together as special encouragement for me. As I sat at home looking through all the material, I had tears in my eyes. The good kind of tears that I'm not used to - Happy tears. On a day that I'm struggling just to be out of bed, this made my day so much better. It was such a simple thing that they might not even know made such a huge difference to me, but it did. It made a world of difference to feel remembered, included and important. The only thing I dread now are the days that I can't go to school to be with them all in person.

Friday, January 8, 2016

It's Just Me and My Mickey

I spent the day getting to know my Mickey yesterday. No, I don't mean this guy:

Although I'm sure that spending the day with this guy might have been a bit more fun. Nope, my picture of Mickey is altogether different. I'll spare you that picture for now (at least until it's healed a bit more). I'm sure that the majority of you are really confused right now, so let me explain what the dickens I am talking about.

Last February I had to start on getting the majority of my calories through a feeding tube. This barbaric contraption that I loved to hate was put up my nose and into my stomach, since I had problems breaking down and absorbing nutrients, putting on/keeping on weight, and was vomiting daily (still am). I received ALL of my nutrition only through the tube from February to June and have been working on trying to rediscover foods since then - it's going horribly wrong. Food and me just have a difficult love-hate relationship. I love food, I want to eat food, but my body doesn't like me having food. It throws it's own form of an anti-food protest and I end up it's main victim. It sucks. Our society is so focused and based on food, I challenge you to name a holiday that doesn't involve food. Can't do it? Exactly. Now name a television channel I can watch without any reference in the shows or the commercials to food. Can't do it? Now you're beginning to see my pain. Everywhere I'm reminded of food. That's the worst possible thing you can be reminded of when all you want to do is hang your head over a bucket. And the holiday season? Let's just say that I think we need to create our own traditions that have nothing to do with food. So obviously, we have a problem.

The solution? Long term supplemental feedings that could be increased back to EEN (exclusive enteral nutrition) where all my calories could potentially be through the tube again if needed. There has been some evidence to suggest that the formula that I am on is beneficial to healing in Crohns Disease as pretty much a treatment itself, but they are unsure of why this is the case. However for some other people like me, who haven't gotten results from medications, elimination diets, etc, they have seen that sometimes a prolonged period of EEN helps to promote the healing. They did a set of scopes right before they did the EEN, and then re-scoped afterwards. Prior to the EEN, some of the doctors on my team were considering the potential of having my duodenum (first segment of the small intestine) removed, a major surgery with potential life-long complications. It's a surgery that none of us Crohns patients would want to have, even more so than the colectomy. But at that point my duodenum was a HUGE problem. When they re-scoped after the EEN feeds, the majority of the deep ulcers showed significant improvement. We were nowhere close to being in "remission" but it was at least a step in the right direction. So to continue with long-term nutrition, they decided that I needed to have a more permanent feeding tube put in, called a gastrostomy (GTube).

True, the GTube gave me back my face which had been covered "Phantom-of-The-Opera" style with medical tape to hold my NG tube in place. I had the GTube inserted November 19, and if you've been following my posts, you'll remember that I posted the "What's Eating Jacob?" story when an allergic reaction to the tube caused blistering, swelling, and internal bleeding. It was a painful time I'd rather not have to repeat at any point in my life.

Yesterday they finally swapped out the old GTube I was allergic to and put in a Mic-Key button tube. The experience was...interesting. I'm a kid who even after probably at least a 1000 blood tests in the past 3 years, needs their mom to shield their eyes from what the blood nurse is doing. Well, when they took the Mic-Key out, I got a good look at what the hole into my stomach for the tube looks like. I wish I could turn back time and wear a blindfold. Then the nurse has to measure by inserting a flexible measuring tube. She said that I have one of the longest tube "tracts" that she has even seen. The distance between the surface of my skin and my stomach is 5cm. It just so happens that the Mic-Key tube button, is only designed for tracts that are 5cm long or shorter. If I add more weight, I might not be able to have this particular design model. In any case, after much pushing to get it in through the stomach hole, it's in.

I was terrified yesterday. I didn't want this done, especially since I was really afraid of being awake for the procedure and it hurting. But I can tell you that it wasn't near as bad as I thought it would be. Yes, it hurts as they're trying to insert the new tube. You feel them really pressing down on your stomach to get it into place. It feels weird sometimes because since it's only being held by a water filled balloon resting on the inside of the stomach, you can feel it shifting. But after the first 30 or so minutes it gets easier.

As for the hanging out with Mickey, I'd still prefer the mouse guy but maybe this other Mickey won't be that bad.