I will freely admit that my ongoing battle with Crohn’s Disease is wearing on me, but something amazing happened today. I woke up with a song in my mind. “How can I keep from singing Your praise!” A great song by Chris Tomlin.
I settled in for my morning worship time and read part of Psalm 119 an identified with David as he cried out to God to deliver him from the evil that surrounded him. I prayed again that God would be in charge of my battle with Crohn’s and that He would give me peace.
As I often do, I put on some uplifting music while I started on waffles and home made strawberry sauce for breakfast. Karl came out to the kitchen and wondered why I was playing an old CD. Evidently the box that arrived yesterday was the new CD by Steve Green that he ordered for me, but I had mistaken it for something else. He opened it up and got it going in my CD player. One of the songs? “How can I keep from singing Your praise.” It gets even better. The lyrics were meant for me.
I will lift my eyes
In the darkest night
For I know my Savior lives
And I will walk with You
Knowing You’ll see me through
And sing the songs You give
This was no coincidence. This was God’s signature on my day, giving me peace in this battle – a peace that only God can give.
I’m running out of options and the few remaining aren’t that promising. My primary care physician and I agree on that. He’s great about realizing I’m not your average patient that you can just pump with drugs and so he searches for more natural remedies for me. I’m a bit of a medical freak and I know it.
Today he asked me how my stress levels were. Ha! Yes, it is true that reducing stress in a patient with Crohn’s Disease can be very beneficial to their guts. I’ll admit it – stress goes straight to my gut and I can literally feel it. My husband keeps an eye out for me and has even called me on some stressful situations and said it would be better for me to back out or avoid those situations. I’m so grateful for his support, but sometimes, stress just happens.
I’m a pastor’s wife with three kids, one of which has an autoimmune disease that keeps us going back to specialists every 6 months for MRI’s and other testing. Nope, no stress here. Did I mention that my husband actually pastors two sister churches and that they are each doing a Vacation Bible School this year – different programs of course – and I’m learning parts for both of them? My oldest is working at camp for the summer and I miss him very much, but I hey he is a senior now and it’s time for this mom to get in on all of the senior class fundraising things – don’t wait for school to start. Time is money!!
I suppose that for me, some of those stresses are worth it. I’d be a fool to think I could truly remove all stressors out of my life and remain forever on an even keel. By removing stressors, I’d also be removing amazing parts of my life. This disease has already taken enough from me. I won’t let it take my life.
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.
It was a disappointing visit at the doctor’s office today. My numbers are up. After receiving trial medication for Crohn’s Disease four weeks ago, my numbers are expected to go down. I did see some improvement, as did my husband. We were both excited about what the next few months would hold and then last week – I hit a major bump in the road.
Pain levels soared up again and the rules are: they count the last 7 complete days of your pain scale diary. The two weeks prior to that were awesome! But the week they scored was my worst week. What it means: if my numbers don’t improve in 4 more weeks, I’m dropped from the study. Even if I’m feeling some improvement and grateful for it, it has to fit in the parameters of the study at the exact time they give. I see why they have the rules they do, but in the end, no one likes to be playing the numbers game.
I could have another great 3 weeks and then the last week before my next appointment could ruin it all. Like many instances in life, one bad episode ruins the whole program. One delicious apple is ruined by finding that half of a worm in one bite. So the progress of Sharon the guinea pig is measure in the final week. It is what it is and it will be what it will be. I will trust God at this point to see me through.
In the meantime, I’m gong to reevaluate areas in my life where I may have inadvertently put others into a forced numbers game. I’ll try to take a look at the whole picture, not just one isolated bump in the road. I think they call that grace.
One of the many things I learned during my days in radio is that you will get twenty complaints before you get a single compliment. That’s not a reflection on your work per se, as it is a reflection on society. What it is saying is that people are twenty times more likely to call in with a complaint than they are with a compliment.
Now let’s look at it from the practical side. If what we want the most to encourage us are compliments, but we are 20 times more likely to get complaints instead. As Mark Gungor would say, you have yourself a math problem.
So I’ve decided to be intentional about making a difference. Yesterday I had lunch with my mom and I saw something in the menu that looked great, but I would need to change one thing. Eating out with Crohn’s Disease isn’t always easy. I asked the waitress if it could be done an she said yes. Later on the manager of the restaurant was making his rounds of speaking to the lunch guests. He came to our table and asked how everything was. We could have easily just said a non committal fine and let him go on by, but I chose to take part in the 20 to 1 Grass Roots Revolution. I told the manager about asking for the change on the menu item and that it was done for me and it was delicious and I really appreciated it. It cost me nothing to give that honest compliment.
We all know what it is like to need a bit of encouragement now and then. And with the 20 to 1 odds, we aren’t likely to get it. So let’s start our own odds. Let’s be intentional about giving honest, sincere compliments and words of encouragement! The 20 to 1 Grass Roots Revolution is this: knowing the odds of how people are more likely to give a complaint than a compliment, we purpose to be intentional about giving honest and sincere compliments and words of encouragement. Let the revolution begin!
“I am a Christian.” And you’re saying this because? So often that’s the way we look at it. Just saying you are a Christian – does it make a difference? It can, if you are intentional about it.
I’ve struggled with a lot of pain after a colonoscopy and the gastro was at a loss as how to help me. Finally, I went to see my primary care physician and he recommended seeing a massage therapist. It was Monday after 5pm, so I had to wait until the next morning to do anything about it. At my chiropractor’s office, they have a massage therapist – only there on Tuesday mornings. I was her first patient the next morning. So glad she had space for me. I’m still in pain, but at half the severity as it was before. Healing is beginning to take place.
My doctor sits on the same school board as my husband. He asked Karl about how I was doing and Karl was glad to report that massage therapy had made a difference. My doctor was thrilled and shared “the rest of the story.” Massage therapy isn’t something he often recommends. However, as a Christian, he prays that God will guide him in how he handles the care his patients need. He said God put those words in his mouth.
Does being a Christian make a difference? When it is more than lip service. When God is your partner in your life work – yes! I for one, am grateful.
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.