Monday’s mean that I tell more of our story. When I left off, I was really stumbling on the path. That hasn’t changed. Sometimes, those creeks we need to cross look a lot like rivers. And I’m not a very strong swimmer. We’re forced forward. Day by day, step by step. Time doesn’t stop. We can’t stop. Every day brings new obstacles. In these last two Monday’s of 2016, I’ll tell you what has happened.
In the last Meandering Monday, I told you about meeting Joy and getting a list of GI’s who may help. That didn’t happen. I sent her a few emails, she never really responded. In the last one, I thanked her for her time and she said that she wasn’t done, I have yet to hear from her. I knew I wouldn’t. It’s life I guess. That doesn’t mean that we’ve given up. It just closed one door.
We’ve moved forward. We saw a Neuro Optometrist concerning the pseudotumor. I didn’t even know that Neuro Optometry was a real practice. He had a sleep study done as well. He’s had another sonogram and an MRI because the sonogram showed a 2.6 cm lesion on his liver. The MRI showed a 2.6 cm clear spot on his liver (no fatty infiltration) which makes me wonder what his liver looks like. Tomorrow, he has an appointment with his PCP concerning some behavioral and personality changes as well as some confusion and lost time as he describes it.
The good news was no cancer and no sleep disorders. The bad news:
1.) the skin over his liver is actually warm to the touch
2.) he’s been in a pain flair for over two months now
3.) Still no answers about the pseudotumor
4.) No one is willing to test him for Chronic Lyme
5.) A lot more questions about the liver
6.) He’s getting closer to aging out at his pain clinic with no real answers.
He admits that his temper is out of control at times. He gets angry over hardly anything. Granted, he does have a lot of reason to be angry all the time, but that’s no way to live life.
I really can’t speculate on tomorrow because the cause could be any number of things. We’ll know more in the next few days. Tonight though, he’s downstairs, he’s on his second helping of pizza after days of cereal late at night. He’s arguing with his Dad like he doesn’t have a care in the world. Tomorrow will take a lot out of him. We’ve gotten better at knowing which buses to take though and I give him time to mentally prepare. Plus we’ll be by Starbucks afterwards.
Tomorrow will be warmer than today, but still very cold. Cold can cause CRPS to flair, not to mention his joints in his shoulders, hips and knees. The outside noises can cause the migraine to soar out of control. And he will be out of his carefully controlled environment. It’s going to be a difficult day. But, it’s something that must be done.
In the new year, we’ll need to make appointments with Pain, psychology, neurology and do better at keeping his therapy appointments. It may be time to find an adult rheumatologist as well. I read an article last week that CRPS is an autoimmune disease. If that’s the case, then there should be a cure. There should be relief. I have to keep fighting until we find at least partial relief for him.
Where has your path taken you lately?
Until, next week, please check out the rest of Meandering Mondays.