Monday, September 19, 2016

I've Got This Feeling...

My life is complicated. At 12, my medication list is at times longer than those of senior citizens. I have more specialists than there are teachers at my school, or at least close to it. I have seen a doctor or health professional at minimum once a week for the last few years. I spend more time in a waiting room or doctor's office than I do anywhere else. My health prevents me from going to school for extended lengths of time, which does nothing to help build my friendships. This is my life, for better or worse. I am the one who has to live with having severe Crohn's Disease, Ehlers-Danlos Syndrome, Psoriasis, and other conditions. I'm the one who has to live with an ostomy after my colectomy, as well as a feeding tube. This is just the way my life is

I had a recent experience which has been on my mind a lot and really bothering me. I had an encounter with a few mental health professionals who had completed an assessment focusing on the way illness has "invaded" my life. Because let's face it, chronic illness is just like an invasion. During the initial assessment meeting, my eyes had started to tear up from the dust or lighting in the room, or else from trying to hide a yawn. One of the mental health professionals was quite quick to point out in front of the group that I started crying when we started talking about a certain subject (I can't remember what it was). He went on to place all of these feeling words on me, and to make sweeping statements that in no way applied to what I was feeling. But I'm one of those kids who won't disagree with adults, at least right away without thinking about things first, so I didn't jump up and say "whoa" even though afterwards I certainly did. 

On our recent follow-up with them to receive the results of their assessment, it left me wondering who the heck they were talking about, because it certainly wasn't me. Another mental health professional said that I was likely internalizing my feelings because I didn't want to burden anyone with how I felt, and that when I started crying during the meeting it was a sign of deep, buried feelings. I think I'm pretty clear with my feelings and have expressed them plenty of times in very public ways such as being published on The Mighty about my experiences being bullied, and living with an ostomy. 

I'm also "too accepting". It is thought that I jump to accepting my health problems too quickly and don't allow myself time to feel the negative. That acceptance is the way that I use to escape from everything that life has thrown at me.  And I jump too quickly to acceptance because I feel "why bother" talking about the negative. Which goes hand-in-hand with me being "too positive", which I also use as an escape route. 

This has been really upsetting for me. I've worked hard to accept that my "old self" is just that, my old self. My life has changed dramatically but it's still a good life. My mom has always said since I was born that I have a choice when it comes to bad things; I can either let it eat away at me and be miserable, or I can find a way to work around it, to adjust. 

Being chronically sick takes a lot of energy out of me. Just to get through a school day right now requires every bit of my super-human strength. Feelings require energy too though, and if I spend all of my energy on focusing on the negative, that's less energy I have for everything else. Don't get me wrong, I still cry, I still get really frustrated and go off on 30 minute rants. But then I move on. I have to. If I don't keep moving on, what good is that going to do? If I chose to stay miserable, to stay in that place of anger and sadness, wouldn't this have more of a negative effect? So I chose to go to my happy place. My happy place is helping others. The feeling I get when someone says "Thanks Jacob, you're a great friend", helps me. It gives me strength to keep going. It inspires and motivates me. It makes me feel like I can accomplish anything. 

What I am having a tough time accepting are the assumptions made about me without really getting to know who I am. Things like "Well a lot of kids your age Jacob feel that....", or "a lot of kids that we see like you feel....", are not predictive of how I'm feeling. I was more than happy to discuss my feelings directly when they were chatting with me. But they also needed to be willing to hear the answers that I was giving them and not put words in my mouth, or tell me what I'm feeling based on the way "most other kids" are.  I am not "most other kids", I am ME. I am Jacob, and I have feelings that I'm not afraid to share. This confuses me. I can't talk about problems I don't have, and because a lot of other kids feel differently than I do, it's a problem? Since I don't have problems with being overly angry, or depressed at my situation, that's also a problem? But then on the flip side, if I only spoke of the negative, wouldn't that also be a sign of problems? And if I deny that I feel this way, than I'm just stuck in denial. And here I thought that the goal of the game was acceptance and adjusting to your new life by using positive coping skills. 

I've decided to stay positive, that there's nothing "wrong" with being me. I like me. I think I'm doing an amazing awesome fantastically superb job coping so far. 

Sunday, September 11, 2016

The Great Return...The School Year Begins

Stop the presses! This week I did something that I haven't really done in the last 2 years, I went to school. Not only did I finally manage to walk through the front doors, but I made it through two complete days!

It was almost like being a rock star. I walked around the corner of the school to gasps, and hearing my name over and over again. My old school friends hadn't forgotten me, which was clear since I was surrounded by people coming up to welcome me back. It's a weird feeling to try to pick up where you left off when it's been 2 years, something worthy of an episode of the Twilight Zone.

Physically, I'm exhausted. I'm in pain. And I'm constantly overheated since the class is not air-conditioned and it's hotter than India here right now. Which also means I'm constantly dehydrated. It's similar to the song about bones, except:

"The overheating is connected to the... dehydration.
The dehydration is connected to the... dizziness.
The dizziness is connected to the vomiting.
And around the loop we go". 

Yet I'm still lucky. I, at least, got to experience my first day alongside everyone else. There are some kids who don't get to have this experience because they're in the hospital, or at home too sick to go, or in some type of treatment room. For once I was able to do something so incredibly "normal", that it's often taken for granted by so many of my friends. Two years away from everything has taught me to be a bit more thankful for the "normal" experiences that I do have. I may not be able to run around the school-yard with my friends, join any sports teams, or even participate in some classes with my friends (I am not allowed to do gym, and I haven't had a french class since grade 4), but I'm at least there with them.

Being away from school so much over the last 4 years, also presents it's own challenges. For example, at my school we start learning to play instruments in grade 4. My instrument of choice was the french horn, which my mom went out and bought for me. Now, let's pause and consider my instrument of choice in terms of my health. I am constantly dizzy and nauseated. The french horn, for those who have never played, requires a great deal of air control and extremely strong lip muscles. When I start to play, within minutes my dizziness has me on the floor. Holding a note for an extended length of time....I won't say impossible but certainly difficult. So, because my music teacher has to start me off from scratch, she has given me the option of changing my instrument. Thankfully my mom owns most of the instruments already, so I have the flute, clarinet, alto sax, or piano to choose from. Now to decide what the least physically demanding instrument would be!

Anyway, the big thing is I made it through the first week. It's such a huge accomplishment for me!

Wednesday, September 7, 2016

The What's Eating Jacob Saga Conclusion?!

Is summer really over? I've been up to so much that I haven't even realised that this was my last week before school starts for another year. Have I ever got an update to share!

A year ago we started the "What's Eating Jacob Saga" which I nicely summed up in Bad To Worse to Horrific: The Graphic GTube Story, after living with some pretty strange and severe reactions to medical products. Last week, I think we have FINALLY found some answers!!

My Dermatology team from Sick Kids had referred me to another dermatologist at Sunnybrook Hospital for allergy patch testing in hopes of finding a feeding tube that I didn't react to. Unfortunately there is no direct scientific test to tell for certain if I am allergic to silicone, which we highly suspect I am, but in all we tested 90 different chemicals often found in medical products, as well as Tegaderm (IV tape) and Covidien Kendall AMD Foam Dressing.

First thing I can tell you about patch testing: It sounds easy enough. Oh yeah, we're just going to tape these little chemical extracts to your back for a few days and see what happens. It's tape, what's so bad about that?! Well not only does tape pull as you move, but if you should happen to react... I wasn't sure my skin would still be on my body by day 5.

Second thing I can tell you about the test: The results can be extremely helpful if you end up having allergies, so totally worth the annoying, itchy, burny tear-my-skin-off feelings the test creates.

We found out that I am highly allergic to:

  • Decyl Glucoside and Lauryl Glucoside - two products most often found in cleansers, ironically it's in a lot of stuff for sensitive skin. It causes the cleaning product to foam up. The problem here is that the foaming hand sanitizer at the hospital, I'm allergic to it. It also hides in a lot of commerical household cleansers. 
  • Limonen - This comes from the rind of citrus fruits and is used in products that have fragrances, anything with that "fresh clean scent" typically has Limonen. Such as my dishsoap. The unfortunate thing here is when products just say "fragrance" in their ingredients, it could very well contain this as a hidden ingredient. 
  • Propolis - This comes from bee products. It's often used in face creams to hold the moisture on to your skin. 
But most shockingly:

I am highly allergic to the Covidien Kendall AMD Foam Dressing. My awesome doctor who did the patch testing is trying to get his hands on the exact chemical as it's not available for commercial patch testing in Canada, but his best guess is that I'm likely allergic to something called PHMB. The long scientific name is Polyhexamethylene Biguanide. It's used in wound-care management to help prevent and heal infections. I've been using it since about 3 weeks after I had my original GTube inserted in November last year. I've written to my patient product representative for this area to see if she would be willing to send us a sample of the extract to test, so we're just waiting to hear back. I've stopped using the foam around my GTube and things have improved a bit. 

Which still leaves the question as to whether I'm reacting to the actual tube itself. One of my mom's friends came up with the idea of taping an old tube to a clear spot on my skin and seeing if it reacts. When my mom asked the million dollar question - If this could actually be done - the GTube responded that it was a great idea and that they had a tube for us! So, we're going to pick up the extra tube this week when we're there for the pain clinic. 

So things are moving forward and we're slowly getting some answers that I'm sure are going to make a huge difference to how I've been feeling. It's sad that it took the summer to get some answers, but there will be plenty more summers to come!