Sudbury Gutsy Walk 2019

On Sunday, I participated in the Gutsy Walk for Crohn's and Colitis. It's an annual fundraising walk that raises money for Crohn's and Colitis Canada, an organization here in Canada that funds Crohn's disease and ulcerative colitis research, provides various programs for people living with the diseases, and raises awareness and educates people about the diseases. Crohn's disease and ulcerative colitis are forms of inflammatory bowel disease (IBD).Canada has one of the highest rates of IBD in the world and it is estimated that 1 in 140 Canadians has IBD. 

I am actually one of those Canadians living with IBD. I have ulcerative colitis for which I am on a biologic drug called Remicade that I receive through an IV infusion every eight weeks and it keeps my colitis under control. I had to go on this drug when my colitis flared up badly in 2016. We found out that the inflammation had spread throughout my colon and my body was not responding well enough to the usual IBD medications so I needed something stronger. It was really scary and, afterwards, I really wanted to get more involved in spreading awareness about IBD and help other people living with the diseases so I decided to start volunteering with my local chapter of Crohn's and Colitis Canada.

I started volunteering with the Sudbury chapter of Crohn's and Colitis Canada in September 2017 and this year's Gutsy Walk was my second time volunteering at the walk although it was my fourth time attending the walk. Last year I was in charge of the kids/activity area on walk day so I took on the same role this year. Last year I had a lot of anxiety since it was my first time volunteering at the walk but this year was so much better. I still had a bit of anxiety before the walk but once we got started setting up I was much better since I knew what to do from last year.

The kids/activity area had three tables underneath two canopy tents. There was a hired face painter who also made balloon animals, bags of candies with sticks in order to make a candy kabob resembling the gutsy guy logo of Crohn's and Colitis Canada, temporary tattoos of that same gutsy guy logo, "I want _____ to stop" stickers where you could fill in something IBD-related that you want stopped and could stick on a board that we had available, a binder full of educational brochures, as well as an area that required donations which included a plinko game. The face painting, tattoos, and candy were obviously very popular with the kids at the walk. 

Since I was in charge of the area, I helped set it up and decided where everything went and then helped out wherever I was needed in the area. I did, however, make it a goal of mine to get lots of people to fill out the stickers for the board since people were not as attracted to that activity last year. This year, I wanted the board to be filled with lots of stickers so I would ask anyone who came to the table if they wanted to fill out a sticker and the board, as you can see in the photo at the beginning of this post, was filled quite nicely.

By the end of the walk, I was just really happy. I had so much fun and I feel so much more confident volunteering at the walk now. It was so amazing to participate in something so important to me and get to talk to some people about IBD and show that they are not alone in having IBD or supporting someone who has IBD. I just wish that the brochures would have been more popular. I think encouraging people to look through the brochures will be my big goal next year and I look forward to it. I'm so excited for next year!

Cheers,

Kaylie

Chronic Diseases: Worries and Dreams

I have two chronic diseases, both of them autoimmune diseases, which I have previously spoken about here on my blog: ulcerative colitis and psoriasis. I try to stay positive, especially since I am a young person and still have my whole life ahead of me, but there are still worries. Even though my treatments for both diseases are going well and keeping them under control, the diseases are still there in my body since cures for them do not exist yet and this of course causes concerns. There are both good sides and bad sides to these diseases and I have been thinking about them a lot recently and thought that I would share them here. I have split them up into the categories of "worries" and "dreams" since the bad parts that I have been thinking of lately are more like worries due to the fact that my diseases are under control right now and I have my personal dreams of what I can do as a person with these diseases.

Worries:
Having two autoimmune diseases makes me worry about what comes next. I worry about my future health. I worry about my future body. What will my body be like as I grow older and eventually reach an old age when people normally start getting a lot of health problems if I already have chronic diseases as a young person? What will my diseases that I already have be like? What other issues will these diseases possibly cause in the future? I already got a second autoimmune disease, possibly from already having one. What other autoimmune diseases might I get? Also, what about my mental health? My diseases that I already have have affected my anxiety a lot. How will they further affect my anxiety and how else might they affect other aspects of my mental health? Then, of course, there is the fact that I am stressing out about all of this and stress can make my health worse and that causes me to stress out about the fact that I am stressing out too much. I just have to take things one step at a time and not worry about what has not happened yet.

Dreams:
I was not raised with religion and do not really follow a sole religion, although I do consider myself to be spiritual, but I believe that things happen for a reason, not necessarily caused by a higher being,  and so I must have these diseases for a reason. That sounds mean since awful things that people do not deserve happen to them and it sounds terrible to say that those things happened for  reason but it is one way that I personally cope with having chronic diseases. Maybe I have them so that they can teach me something. These diseases have definitely made me more accepting of others who have health issues. I have also learned a lot more about health and wellness, medical issues, medications, the health system, etc. because of these diseases. They have also made me rethink my life, focusing on my health a lot more and turning me into a more positive person. I am more aware of my body now and try to pay more attention to my mental health. Maybe I have them so that I can help others with diseases, educate people about chronic diseases or raise awareness about them, or so that I can inspire other people by showing them that you can have a great life even if you have chronic diseases. Maybe I was needed in order to do one of these things and the best way for me to accomplish this was by having these diseases. Having these diseases has made me stronger and they have pushed me even more when it comes to wanting to achieve my hopes and dreams. When you feel like you have hit a low point, you have to just think that now there is nowhere to go but up. Even though I continue to go through health issues and have not necessarily hit the bottom, I keep the "nowhere to go but up" mentality and use all of the bad stuff that has happened as fuel for accomplishing my goals. As someone with Finnish ancestry, I also keep sisu in mind. Sisu is a Finnish word that us Finns live by and it is basically the act of continuing on even when you feel like you have come to the end. My dreams are of using these diseases to help me and other people rather than bring me down.

It is unfortunate that I have these diseases, especially as a young person, but they are a part of me rather than being who I am. I am not the diseases. I am me. I just have these diseases and have to deal with them and everything that they bring with them. They are a part of my life and they can be a part of why I accomplish my dreams. I just have to deal with them right and let them take me on the journey that they have been "given" to me for.

Cheers,
Kaylie

Psoriasis: My Second Autoimmune Disease

Last year, something weird started happening to my scalp. It was as though dry skin was layering up and it was peeling and eventually started getting gooey. It was gross and uncomfortable. My mom said it was probably something called cradle cap. It kept getting worse and then I started getting more skin issues. The skin behind my ear was getting similar to my scalp and the skin on my face was getting really dry and flaky. I remember one point where it was so uncomfortable that keeping my eyes open was exhausting. It did not look good.

In the Fall, when it just seemed to be getting worse and worse, I finally went to my family doctor and she thought that it was a fungal infection. I had several doctor's appointments over the Fall and Winter months, trying several different topicals (medicated creams and ointments), a few different oral medications, and a fungal shampoo. Some of the topicals seemed to help a bit, especially on my face, but my skin was still getting worse. I was getting red itchy spots on my arms and chest and my back was getting red and dry. At first I thought that the spots were just hives since they kind of looked like them at first but then they would change to bigger spots of layered, flaky red skin. They looked terrible, especially after getting wet. My skin issues seemed to just be continuing to spread.

My family doctor decided that it was time to refer me to a dermatologist since it was getting worse and there wasn't much more that she could do for me. We had to figure out what was going on and, for that, we needed a specialist. I ended up getting referred to a very nice dermatologist and she thought that it was also a fungal infection. She said that several things could cause a fungal infection and that we needed to figure out what was causing it in order to prescribe the right medication. She took a biopsy of my scalp since that was the worst skin and the origin of the skin issues. I was a bit nervous for the biopsy but it wasn't so bad. The dermatologist applied freezing to the area with a needle and then cut out a small chunk of my scalp down to just the fat tissue. She then stitched up the skin with a single stitch. This was my first time ever getting stitches.

When the results of the biopsy came back, it showed something different than a fungal infection. The result was psoriasis. Psoriasis is an autoimmune disease that causes the skin cells to not stop growing, resulting in dry layered patches of skin. I was disappointed but not surprised. A great-aunt on my dad's side of the family and a great-grandmother on my mom's side of the family both had psoriasis. Also, I already have another autoimmune disease: ulcerative colitis. The biologic drug that I am on for my ulcerative colitis, Remicade, is used to treat psoriasis as well but, in some cases, it can make it worse. I seem to be one of those cases since I had several of my regular doses of Remicade during my psoriasis flare up and it didn't seem to help at all. Since I have severe ulcerative colitis and the Remicade works so well for it, the dermatologist didn't want me to have to switch to another biologic drug but it became an option for if the topicals that she would prescribe for my psoriasis didn't work. The topicals that she prescribed included a medicated gel for my scalp twice a day, an anti-inflammatory cream for my face twice a day, a medicated cream for my infected scalp and skin behind my ear twice a day, and a medicated foam for my body once a day. Now that my face and infected scalp and ear are better, I am only using the gel for my scalp and foam for my body. Thankfully the topicals have been working great so it looks like I don't have to switch to another biologic drug.

Other than that scare of possibly having to switch biologic drugs, since there would be no guarantee that other biologic drugs would work for me like Remicade does, psoriasis is really more annoying than anything. The skin becomes itchy and uncomfortable and makes you want to cover it all up so that no one sees it but at least psoriasis doesn't affect an internal organ like my ulcerative colitis does. However, the fact that psoriasis is an autoimmune disease concerns me since it is my second autoimmune disease and I just keep thinking "What next?" I need to stay positive though. Having chronic disease as a young person can really make a person feel down but I need to just keep going. I can't let it all stop me from achieving my dreams.

Cheers,
Kaylie

Talking About Feelings

Something happened a few weeks ago. It was just a simple question that my Mom asked me but it felt so good for someone to actually ask me that question. It felt like something that I needed to be asked. While I was telling my Mom about my ulcerative colitis acting up, she asked me if I was worried about it. That's it. I then proceeded to answer the question and talk to her a bit about how I felt about my colitis acting up. This might not seem like such a big deal but I'll give you a bit of background information to explain why this was so important to me.

My latest Remicade infusion was on May 16th. My ulcerative colitis started acting up around three weeks before that date. I receive these infusions every two months and they keep my colitis pretty under control. Last time I received my infusion, my colitis only started acting up a few days before the infusion. So, the fact that my colitis started acting up three weeks before my next infusion was a bit concerning. During the month of April, I was really stressed out and I still am. One of my Great-Aunts passed away from cancer on April 10th. Less than a week before that, my Grandma (the sister of my Great-Aunt that passed away) was brought to our house to live with us for a while because her health has been going up and down. Just a few days after being with us, she had to go into the hospital (for the second time this year) for several weeks and now she is living with us again. She needs help with a lot of things and someone has to be with her at all times. All of this has been overwhelming for my family and I. Then add my colitis acting up on top of all of that. Of course, there were some great things that happened in April as well but I have still been stressed out.

My family and I can see that all of us are stressed out and overwhelmed by everything that has happened but we haven't really sat down and talked about it. Because of this, I know that I myself have been bottling up a lot of emotions and everyone else is probably doing the same which isn't healthy. We keep moving forward and deal with everything going on but I feel like we need to just let out everything that we're feeling. So, when my Mom asked if I was worried about my colitis acting up, it felt so good to finally be able to talk about one of the things that has been stressful for me. Especially since stress can make health problems worse and the recent stress may have therefore contributed to my colitis acting up. Also, it helped to just talk to my Mom about the fact that April was stressful and that the stress has continued into May.

Since my colitis got pretty bad in the Fall, it definitely stresses me out when it acts up and it worries me a bit even though I know that my doctors won't let it get as bad as it did before. I get a bit scared that the infusions aren't working or my colitis is going to start interfering more with my life. Worries aside, it just isn't pleasant when my colitis acts up. Having someone just ask about how I feel about my colitis acting up and to admit to them that I'm stressed out helps me let out some of the thoughts and emotions that I bottle up. Because that's a big problem that I have. I bottle up too much. So, talking about what I'm going through helps. A lot.

Although, sometimes I don't want to bother other people with my problems but I still need to talk to someone. Sometimes I'll start talking about something that's bothering me and nobody seems to want to even talk about it. It's like they try to avoid talking about it because it makes them uncomfortable or they don't want to take the time to listen or just don't want to pay attention to me talking for whatever time that it takes. And that itself bothers me. I'll start talking but they walk away. Or they just change the subject. Or they respond a bit but they don't want to really listen and really give some kind of answer. Just having someone listen to me get something off my chest helps a lot. It isn't very complicated.

I guess I'm just trying to say that we need to learn to talk about our feelings more and listen to other people when they need to talk about their own feelings. It doesn't make us weak. It shows that we are brave for wanting to talk about something that's bothering us. As for the people listening, they'll know that if something is bothering them, then they have someone that they can talk to about it too. It also helps to have someone really ask how we are feeling sometimes. And I mean ask how we are really feeling. Not just a simple small talk version of "how are you?" I know that. most times, I feel inclined to say that I'm fine when someone asks how I am. Everyone goes through tough times and so sometimes we just need people to care about how we are actually feeling and listen... and then we can be there to listen to them when they need us too.

Cheers,
Kaylie

My Remicade Appointments

Remicade is a biologic drug that is used for various health problems. I have to be given Remicade for my ulcerative colitis, which I have already talked about in a previous post. Some of you might be wondering what it's like to go for an appointment to receive Remicade since it is a medication that needs to be administered through an IV. I'll reveal it all to you in this post!

A very important thing that I have to do on the day of the appointment before I even go to the clinic is drink lots of water. The reason for this is to get the veins ready so that it's easier to put the IV in. So, you can bet that I take this step very seriously since I want that IV to go in as easily as it can and I don't have to get poked several times to get the IV in.

When I go for my appointment, I go to a clinic that is quite small and cozy. There are four comfortable chairs set up for people receiving IV medications so there will be a maximum of only four people there at a time for appointments. The room feels a bit like a living room which is the atmosphere that these specific clinics are going for because they want to get away from the uncomfortable or scary hospital setting. They want people receiving IV medications to feel comfortable.

When I get to the clinic, I sit down in one of the chairs and prop my arm up on a pillow that I place on top of the arm rest. When the nurse is ready with everything needed for the IV and for doing a blood test, she inserts the IV into my arm. My right arm has a really good vein so I think that I'll keep using that arm for the IVs since the veins in my left arm aren't always the greatest. I used to get really freaked out with IVs and I still get nervous while the IV is being put in. My breathing goes a bit weird, I start sweating, and I might even start shaking a bit. I'm not as bad as I used to be though.  IVs aren't really scary once you understand that the needle is inserted simply to get a very tiny plastic tube inserted into the vein and then the needle is taken out so that all that is left in the vein is the plastic tube. The tube is very flexible so that you can can still bend and move your arm. I guess I'll just get more comfortable with IVs being put in with the more that I get. Before hooking up the medication, the nurse takes some of my blood through the IV for a blood test (because the medications that I'm on can have internal side effects so my doctor needs to keep an eye on everything) and then she hooks up the plastic tube through which my Remicade drips into my bloodstream by gravity.

After the IV and Remicade is all set up, the nurse usually asks me if I'd like a hot beverage (I'm a tea drinker so I never refuse a cup of tea) and I get comfortable to spend 2-3 hours there. There's a TV set up in the room with Netflix if any of us receiving medication feel like watching TV episodes or movies and there are always plenty of snacks. I like to take the time to read or write and meditate. I think of it as some personal relaxation time.

There is usually only one main nurse at the clinic and she is super nice and really good at setting up IVs. I also love how the nurse calls us clients rather than patients. It makes us sound like we're going for some kind of professional meeting rather than a medical appointment. It also makes things sound less scary. Throughout my time at the clinic, she adjusts the dial on the IV tubes to control how fast the medication drips.

After 2 or 3 hours have passed and the bag of Remicade has completely drained into my bloodstream, the nurse removes the IV and I am all done! When I leave the clinic, I feel fine. Some people get the common side effect of feeling tired while others don't feel tired until the next day. Sometimes I feel more tired than usual the next day so I make sure to take it easy.

The nice thing about Remicade is that I only have to receive it every two months. Not too bad, huh? Especially when you think about how some people have to take pills every single day. Those people have to take pills because the pills work for them, though, whereas the pills were not working well enough for me so I needed something stronger.

Well, I hope that sheds some light on what it's like to go for an appointment to receive Remicade (or other IV medications). Maybe now it won't freak you guys out as much if you ever have to receive an IV medication or if you hang out with a family member or friend while they receive an IV medication. I've noticed that people are sometimes kind of nervous when they are sitting with or visiting someone at the clinic who is receiving an IV medication. I understand that these medications are strong and are given through an IV and are kind of a big deal but those of us who receive these medications get used to receiving them and it becomes not so much of a big deal to us.

Cheers,
Kaylie

My Word for 2017: HEALTH

From October 6th to the 21st in the Fall of 2016, I was in the hospital. My proctitis had flared up and I became really sick. I became anemic, could barely eat, and lost weight. I basically felt like I couldn't do anything anymore because of such a lack of energy and I was getting to a point where I felt depressed. I was not in a good place. I went to several doctor's appointments and I went to emerg at the hospital twice. I was put on medication but it wasn't working like it should. My family doctor, along with the gastroenterologist that was filling in for my usual gastroenterologist, decided that it would be best if I was admitted to the hospital so that they could do some tests to figure out what was going on.

The day after I was admitted to the hospital, I went for a colonoscopy and it showed that the inflammation that had stayed put at the end of my colon for almost five years had spread to the rest of my colon. I remember hearing the gastroenterologist say "no wonder you're sick." I didn't have proctitis anymore. Now I had ulcerative pancolitis which basically means that there is ulcerative colitis in the entire colon.

I was on fluids and an IV form of prednisone. Once they took me off of that, I was on some pills. I was getting better but it was very slow. At one point, my hemoglobin went low (it dropped to 71) and I had to get a blood transfusion. Through the slow progress in the improvement of my health and the fact that I had to get a blood transfusion, the gastroenterologist said that my body was not responding well enough to the usual medications and I had my first dose of Remicade two days after my blood transfusion. Remicade is a biologic drug which is taken through an IV and it is basically the strongest drug for ulcerative colitis. I now have to receive it every two months, basically for the rest of my life since it is the kind of medication that you have to continue to receive in order for it to continue working. If Remicade failed, then I would have to get my colon removed.

Staying in the hospital was a scary experience for me. I had never stayed overnight in a hospital before and it didn't help that needles freak me out and I had to get IVs put in several times along with blood tests every day. I also got really depressed, which was possibly due to side effects from the medication, so my mood and my thoughts were really messed up. Also, I had to deal with the fact that my chronic illness had now become way worse than it used to be. I cried a lot and my parents took turns staying with me overnight for most of the nights because I would sometimes wake up all freaked out or I would wake up in the morning feeling really scared and alone. It was awful.

It wasn't easy once I got home either. There was so much information along with appointments and paying close attention to my body while it was still healing. I got really overwhelmed. So, I did something that always helps me when I'm overwhelmed by too many things. I organized! I put all of the information into a binder and split everything up into categories using dividers. Some of the things that I have in my colitis binder include a page for important phone numbers, calendars for keeping track of appointments and medication schedules, medication information, diet information, etc. Having everything organized nicely in one place rather than just having  pile of pages helped so much! My brain didn't feel so scattered anymore. Another thing that I did was make sure to keep on top of phone calls that had to be made and appointments that I had to go to. I made sure to get things done right away instead of putting them off until later.

Fast forward to now, over two months later, and my colitis is much better than it was before but my body still has some more healing to do. I have had a total of three Remicade infusions so far with my fourth one coming up next week. My colitis started improving a lot the day after my first Remicade infusion in the hospital but the other Remicade infusions seem to only make it improve a little bit more rather than a lot more. I guess I'm still lucky though to have it work as fast as it did because it can take several infusions for some people before they start to see any improvements at all. So, maybe the Remicade still hasn't kicked in entirely for me yet. It is definitely working though, because I'm not getting sick again like I did before.

Having said all of that, it was easy to choose my word for this new year. My word for 2017 is HEALTH. Even though my health has greatly improved, there is still more healing to do. Also, I need to pay more attention to my body now since my colitis spread to the rest of my colon. I need to focus on my mental health as well since living with a chronic illness, especially when it is considered severe since I am on the strongest medication for it, can be difficult and can really affect how you feel. I hope that by the end of this year my colitis will be completely under control thanks to the Remicade and that I can say that I chose the perfect word.

Cheers,
Kaylie