Tag Archives: crohn’s

Jumping Ahead

When you are used to being active and involved in everything, being sidelined is almost a fate worse than death. So you can imagine my anticipation and eagerness after a corrective surgery to get back on my feet and get back in the game. Oops, a little too soon and a little too fast.

The good news is that the evil adhesion mass has been removed and once I fully recover from the surgery, look out world here I come! I’ve longed to do so much that my hunger and thirst for it drove me harder, faster, more – and just a little bit of overdoing it.

There are things I’ve promised myself – no more sitting around and doing nothing! Getting out and doing things again and saying yes to more invitations. But I’ve come to realize that being sidelined has an impact on more than your physical ability. It creates new habits, new routines, new ways of doing things. I’ve already faced a couple of situations where activity was available, but the habit of staying home and drawing into myself reared its ugly head and sometimes won out.

The biggest battle I face now may no longer be physical pain, but the kind of life I accepted while I was in so much pain and whether or not to continue coasting along. God give me strength to no longer find coasting along as acceptable!

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Underlying

Arthritis. Yuck.

As I continue to engage in this war with Crohn’s Disease, I do end up in battles with arthritis. Crohn’s drops arthritides into the bloodstream and so my Crohnies and I can get Crohn’s induced arthritis. Not fun.

What I learned from my Rheumatologist yesterday is that the Crohn’s ulcers themselves do not have to be active and flaring in order for the arthritis to be active and giving me grief. In other words, the underlying cause of everything doesn’t have to be visibly active in order for some of its spinoffs to be actively attacking my body.

Reality check. I had no clue. I thought it was all or nothing and that I just didn’t have tons of ab pain whenever one of the other Crohn’s symptoms was manifesting itself. Nope. They can creep up at any time, even when the main culprit appears dormant. So right now I’m applying this little nugget to life in general. Hits me like a brick.

How many times have I thought things weren’t so bad because the main thing wasn’t going nuts? How many times have I put up with little relational issues that were stressful and harmful, because I thought the real big relationship killer wasn’t that active right now, so I could handle this other stuff? The reality is that even if the big bad issue isn’t “active” it is still what is feeding and prompting all of the little things.

Time to take a careful look at what is plaguing me. Time to stop jumping from one side issue to the next and focus on correcting the one underlying thing that is spawning it all. This isn’t going to be easy. God give me grace.

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In a Mood

It’s never fun to get kicked out of the club. I got kicked out this week.

In order to stay on the study for Crohn’s Disease, I had to have a significant change in my numbers since the last injection of medication. I didn’t get it. Even though there was a 40 point change, it requires a change of 100 points or more to stay in the study. So I’m out of the club.

I was expecting it, because I’d been keeping my pain level journal and I knew the numbers wouldn’t add up right. Being dropped off the study wasn’t nearly as discouraging as the limited amount of options remaining for me in dealing with this beastly disease. So I allowed a mood of discouragement and just plain, “I don’t care” to take over for a couple of days. But I discovered something: it’s not fun to live like that.

I’ve had a couple of days of getting myself back together slowly and now it’s back to the drawing board. God has gotten me through so many bad times of Crohn’s and He will get me through this one as well.

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One in a Million

I’m the one.

Odds are one in a million that you will have an allergic reaction to this medication. I then have to inform the doctor, yes, but I’m the one. I tried to convince a doctor once that I was a medical freak. She would hear nothing of it. She explained that you had to have at least three things going on at the same time. I did and I told her so. She didn’t have much to say after that.

One of my gastro doctors was the first to accept my self-awareness. Oh yeah, you’re the weird one. I proved it true under his care. I was the one in a million that wouldn’t properly metabolize the medication we were trying for my Crohn’s Disease.

It’s not easy being the one. Currently, it rather hurts. Only one in a million will have an adverse outcome from a colonoscopy. Again, I am the one. There are days I wonder what it would be like to be normal. God give me strength.

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Who

I want to know who invited Murphy when it was time to make laws. I don’t like Murphy’s law.

A fabulous family friendly New Year’s Eve celebration, including sparklers, s’mores, bonfires and fireworks was amazing.

Murphy said after that I had to have one of my worst ever Crohn’s disease attacks today. Not how I wanted to start 2013.

Please stop inviting Murphy to the table.

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