I saw my gastro a couple days ago and we decided to bump me up to weekly Humira injections.
Since the get-go I’ve pretty much had some Crohnie symptoms around day 10 out of 14. They’re totally bearable and I hardly notice but my doctor doesn’t want my body to have any opportunity for inflammation to develop.
I asked her to change my needle prescription to syringes that I would manually inject myself. I’m not a huge fan of the automatic pen.
I’m excited cause I always have the BEST POOPS after my injection.
Sorry I’m not sorry.
I am embarrassed of my disease.
I recently applied to be a volunteer for the M&M BBQ Charity Day in my hometown.
And obviously I should be advertising it via Facebook and whatnot. But I can’t bring myself to do it.
I should be trying to get as many people to come as I can. But I can’t for the fear that people who don’t know what Crohn’s or UC or IBD is, google it, and just see me as a walking bowel issue.
I am scared of being reduced to my disease.
And being viewed as “gross” or “dirty” because these are the words associated with “bowels” and “intestines” and “guts”.
I have no problem telling people about my disease because in that context I am given the opportunity to personally describe my condition. But there are so many people on Facebook that I just don’t trust to respect me or this disease.
This has just opened a whole can of crisis worms. Me wondering why I am not doing more for this disease.
Why aren’t I taking initiative?
I’ve been using school as an excuse for a year.
My degree is almost complete and I can’t use that as an excuse anymore. When people ask me what I am going to be doing, I always reply “work and volunteering [for anything but IBD]”.
It’s time to face my disease. I can’t keep acting like it’s nothing. That’s not strength.
I want to be treated like I am completely normal & healthy. I think that’s what most people want when they have a chronic illness.
BUT I wish that my family would remain considerate of my dietary restrictions, even when I am not sick.
There is nothing in this house for me to eat. Everything is multi-grain or whole wheat or dairy. Everything.
I don’t mean to sound like a bratt. But like, if I knew my dad wasn’t going to buy Crohn’s friendly food, I would do my own grocery shopping.
I just feel disrespected I guess.
I have a full blown cold and it’s the first REAL ASS-KICKER I have had since starting Humira a few months ago.
So far, I haven’t thought much of Humira’s side effects. It’s something my mom has spent a lot more time stressing about.
She’s always been super worried about me getting a cold while I’ve thought nothing of it.
Now that I actually have one though, warnings on the potential development of serious infections like tuberculosis seem much more threatening.
I’ve taken a couple sick days to try and kick it. When you tell people you have a cold, they obviously don’t really understand why you’re putting your life on hold for something so minor. Most of the time I’m just not in the mood to provide context.
Just another seemingly minor thing you don’t think about when you’re living with Crohn’s.
I saw my GI a couple weeks ago. My weight is up, my energy level is great and Humira is working like a charm. I am feeling very lucky.
We briefly touched on the future and how our conversations are going to change as I get older. She brought up children, which isn’t on my radar AT ALL right now. What I was really interested in talking about was traveling.
This is something I really want to do in the next couple years. I am approved to graduate with my 4-year Bachelor’s Degree this spring. I need some time off. To catch my breath. To see an entirely different scope of life.
I knew traveling would be hard as long as I am on Humira. And right now, Humira is my treatment plan for life. Or as long as it continues to work. Humira has to be refrigerated until use so I can’t just put the needles in my backpack and go. My GI basically said I am going to have to contact pharmacies based on my location, pre order Humira and organize my trip so I can be at each designated pharmacy every two weeks.
Basically, my trip isn’t going to have a lot of the flexibility that other backpackers can enjoy. It’s a small road block that I have no problem dealing with if it means I get to do what I’ve wanted to do for a long time. I am also limited in the types of places I can go. My GI stressed the need for me to travel somewhere clean, where my general health won’t be at risk.
Little things to think about. But big things to be excited for.
On a totally different note, I’ve developed a cold. My mood in the past couple months has been generally apathetic so I’m pretty unfazed by it right now. But my parents are freaking out. If you get sick on Humira, even just a little common cold, sometimes they’ll make you stop taking it. Humira puts individuals at a higher risk of developing a serious infection like tuberculosis. So. Earlier bed times for me this week.
Again, little added things to consider. Things I didn’t really have to consider a year ago.
BUT STILL FEELING LUCKY.
• 64 per cent say having IBD has influenced their choice of career;
• 50 per cent have left or lost a job at least in part due to having IBD;
• 61 per cent felt having IBD has held them back from advancing in their careers;
• 66 per cent experienced depression and anxiety during an active flare of their disease.
• 44 per cent have had an accident in public because they couldn’t get to a bathroom in time.
• 89 per cent of people who had IBD as children feel they could have achieved more at school if they did not have the disease;
• 80 per cent of people who had IBD as children missed out on sports and activities as a child, and feel now they are less fit than their peers due to their IBD;
• 81 per cent of people who had IBD as children had an accident at school that caused them shame or embarrassment.
• 69 per cent of people who had IBD when they were young were delayed in completing their post-secondary education due to their disease.
