Yesterday I was sitting in a doctor’s office signing my life away, again. I had started an experimental study for Crohn’s Disease, but I had to be taken off due to an infection. So yesterday we went through the process again and I had to sign papers all over again.
The specialist I see has to ask questions about where I am at and how I feel. Obviously if I’m feeling great and have no symptoms, they want someone else for the study. She asked about mouth ulcers, known to happen in Crohn’s patients and very common to me. I admitted I had a few recently. Then came the exam.
She listened with her stethoscope, examined my eyes and finally looked inside my mouth. “Oh, I can see where you had one on your tongue and it is healing.” After the exam was over and we were on our way to get some healthy lunch, by the way Jason’s Deli offers a variety of healthy options, Karl apologized, even though it wasn’t his fault.
“I didn’t know you were struggling with mouth ulcers. I’m sorry I keep trying to kiss you right now.” What was wrong with my voice? Why didn’t I just admit that I was in pain in my mouth and just didn’t care to be kissed right then? It wasn’t his fault, it was mine for not speaking up. Even though we’ve been married for more than 20 years, sometimes I still don’t want to admit when the Crohn’s Disease has done one of its things to me and I just don’t want to be kissed right now. It’s a part of my life. I need to quit pretending that it doesn’t happen and just be open and honest with the one man who won’t laugh or shame me for what I’m going through. Lesson learned, I hope.
Greta had her one year follow up regarding her ADEM. It seems we learn more about this disease each time we see her specialists – actually we learn more about how it is affecting Greta. Her MRI looked great, no new lesions and shrinkage of most of the original ones. There is one spot on her brain that isn’t going away. The doctors said that since it is one year out now, most likely she will have that spot for the rest of her life. This will make things interesting for her. If she ever has an MRI of the brain in the future for any reason besides the ADEM, she’ll have to let them know ahead of time that she has a spot on her brain, from a childhood illness.
We learned that there are four friends that hang out together after brain injury/trauma/lesions. They are perseveration, decreased math skills, memory oddities and being very literal. And yes, Greta is textbook with these issues. She latches on to things and won’t let go, like a honey badger. She’s been taken down a grade level in math and we never know when her memory is going to take a brief hiatus. What about being literal? Don’t even think about using a figure of speech unless you are prepared to spend 10 minutes explaining it to Greta.
The literal issue is probably one of the biggest. Most everyone has run across someone who has no concept of boundaries or sharing/taking turns. So the latching on to things of perseveration won’t hinder her throughout life. Many people hate math. Greta will have many sympathizers. Who knows what is memory and what is not? Half of our lives are spent connected to some sort of electronic device to prompt us of important things anyway. But being very literal – it could lead to all kinds of trouble.
I remember saying something like, “It’s got your name written all over it Greta.” She did indeed look for her name and then got very angry that I had lied to her because obviously her name wasn’t on it. She had no concept of the figure of speech. This is one of many incidents she has gone through. So I will start praying now that there will always be at least one person in the group (Greta loves being with friends) that will help her get past this literal hurdle. For now, it is her family. I pray she finds friends to help her overcome these setbacks in college and eventually the workplace.
Perhaps this is why the Bible tells us to confess our faults to one another. It doesn’t say sins. It says faults. If we open up and share with each other our struggles, the hope is that your friends will pick up the slack where you need it most. But this requires vulnerability. This requires risk. What if I share my struggle with someone and they just laugh at me? What if they use it against me and keep me from getting that promotion I was set for? We can start by being a good example. You probably already know an issue that one of your friends struggles with. Go out of your way to be a true friend and pick up some slack. Be intentional about helping your friends and family. It matters.
“It’s the biggest thing happening in East Texas right now.” This is, of course, from the health care perspective. So now I find myself in the midst of the most happening thing in my neck of the woods – a double blind study about whether or not a particular medication is helpful to Crohn’s patients. There are three things that could happen. I could get a generic dose of the medication. I could get a dose that is measured for my age, height and weight. I can also end up with the placebo. I feel like I’m in one of those “you choose the ending” books that I used to read in junior high.
Blood work, EKG, lots of questions, lists of medications and on and on I went through the screening process yesterday. Am I a good candidate for this study? That is still to be determined. In the meantime, I have a diary. I’ve never been good at diaries. This blog is the closest I’ve ever come to writing something down about life on a regular basis. But now, I have to record each day the meds I’ve taken and my pain level and a few other things that Crohn’s patients will know about but I won’t mention here.
My assumption? Once I’m sure to be in the study, I start the diary. Boy was I wrong. I’m supposed to start it right now! These people need to know how bad my pain level is and everything else to even see if I would notice a change due to a new medication. They have to see a record of several weeks of how bad it is, so they will know if I’m actually improving or not once the medication (or placebo) starts.
I’ve always seen myself as a strong person, able to overcome. Keeping track of my pain isn’t going to be easy. I’ll have to admit just how much this disease has beaten me up the last couple of years.
I’m going to have to be broken, vulnerable. Evidently, that is when healing can begin.