You Went Dirt Biking?! You Must Be Feeling Better!

Kawasaki kx100
My Kawasaki kx100, Monster.

I actually had this said to me the past week. A common misconception with people who have a chronic illness is that if we’re out doing something fun we must be feeling better. Which isn’t always the case. And certainly isn’t the case with me.

I had to explain to the person who said that that I’m still sick. And that it could be a few months before I start feeling better. My doctors are still working on some stuff and it all takes time, unfortunately. Especially when you’re waiting for specific lab tests to be done.

What people don’t see is how much these fun activities cost us in terms of energy, recovery, and pain. And what I let people see while I’m out in public is normally completely different from what I show at home. When I’m at home there are days that I’m curled up with my heating pad all day. Or my joints are killing me and I’m in tears from the pain and trying everything I can to find some relief.

This sick gamer had to wear some compression gloves and I had been using my heating pad on and off all day. This is the side of me that people don't see in public.
This sick gamer had to wear some compression gloves and I had been using my heating pad on and off all day. This is the side of me that people don’t normally see in public.

So yes, I’m still sick. And yes, I decided to go ride my dirt bike for about an hour with my fiance last weekend. There are days that you just need to get out of the house and go do something. It’s important for people with chronic illness to get out and do stuff and still have fun. Even if it costs us. I don’t want to be sitting at home feeling sorry for myself.

Now, I’m not always successful in that regard. There are days that I feel too ill to go out and do much of anything. And at times I do end up feeling sorry for myself. Which is all part of having a chronic illness. Things aren’t always rainbows and sunshine and that’s ok. You just need to eventually pick yourself back up and keep going.

Which is what I’ve been trying to do. I’ve been flaring since mid-July. Could you imagine not doing anything for two months? Or more? I’m thankful that my flare isn’t so bad that I literally can’t leave the house. Because I’ve been there before. This time around I’m mostly having a lot of abdominal pain. Which can still make activities difficult. But I fight through it. I’m only functioning as well as I am right now because of the prednisone. I can only imagine what things would be like if I wasn’t on it.

So the next time you see or hear about your friend or colleague doing something fun who has a chronic illness. Try to not judge us too harshly. Many of us have gotten pretty good at faking being well in public. You won’t see the recovery that takes place behind the scenes at home. Maybe someday you’ll get to see the pain behind the mask. But instead of assuming that we’re doing better, how about asking how we’re doing instead.

Have you had someone say something like this to you before? What did you do?

KenzieIBD

 

 

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#FiveFavorite: Summer Activities

#FiveFavorite: Summer ActivitiesHere are my five favorite summer activities. They’re not things I do all of the time. Or as often as I’d like. But I do try to make sure that I do them as often as I can.

Although, when it comes to reading. I read pretty much all of the anyway. Next year hopefully I’ll have some nice outdoor furniture so I can read some outside. I’d really like that.

  1. Camping
  2. Hiking
  3. Walking my dogs
  4. Reading
  5. Riding my dirt bike and motorcycle

What are some of your favorite summer activities?

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Labwork, Colonoscopy and Prednisone

Labwork, Colonoscopy and PrednisoneI had an appointment with my GI on August 30th. I’m glad that they were able to get me in sooner than November! We really needed to talk about what’s been going on. It’s hard to do that over the phone at times when I have to go through Dr. M’s triage nurse.

As of right now, I have a colonoscopy scheduled for October 12th. This time, I have to prep for it in a hotel, though. Which I’ve never done before. I have gotten some tips from my fellow IBDers on Twitter so I will make sure to share those things with you when the times comes!

I’m not particularly excited about this colonoscopy. A month ago I was pretty dead set on not having one but I’ve resided to the fact that I probably need one. I haven’t had a scope since May of 2014. And Dr. M has yet to do a colonoscopy on me. So it’ll be good to give him an idea of what my colon looks like.

I will be staying on prednisone for now. I got to go down to 30mg from 40mg! Which is nice. I may eventually switch over to budesonide. I think we’re waiting for my labs to come back before we decide that.

The Prometheus antibody test will be done on September 10th. They’re actually having a mobile lab come to my house to take my blood. Which is pretty neat. As of right now, my insurance doesn’t want to pay for the test. They think it’s just “investigative” and that  we won’t get any good information out of it. But, don’t you want to know how well it’s working? Although, at the same time. It would actually be cheaper for me for the test to be denied. I’d have to pay more if the insurance did decide to help pay for it. Because of how my insurance plan works.

So, we will see what happens. And I will continue fighting through this abdominal and joint pain that I’m having. These lab results can’t come back fast enough!

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#MotivationMonday

Be gentle my little thunderstorm, the world is just not ready.

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#MotivationMonday

It's ok to be a glowstick. Sometimes we have to break before we shine.

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