So today was our second game, but MY first game out on the field. I missed first game as I was in Pennsylvania taking the BioExperience tour with Janssen. But that is another upcoming post, so stay tuned for that! Yes, today was my first game, not even a full 48 hours after being released from emergency care at Cedars. Sounds nutty, right? Yea, my parentals are not too thrilled. In fact, my mother takes every single opportunity she can to remind me that I’ve earned enough frequent flyer miles to the ER, than she ever has in her lifetime with four kids. I’m sure if I were the mother of a single mother with two autoimmune diseases who almost lost her life…I’d bark at her too. But what am I suppose to do, lay in bed forever? My kid is athletic, he needs to play and I love coaching. So, here we are.
Should I have been out on the field so close to an ER visit. This time, I’m okay. If I wasn’t admitted and my pain management is…well, managed…then I don’t see the harm. None of the kids on my team were sick. I am not dehydrated or weak. But the neuropathy is kicking my butt and my pouch hurts a little bit. Not a lot, but a bit. I think the key is weighing your symptoms. Everyday is a challenge. Everyday you have some sort of symptom. It could be a headache, dehydration, neuropathy, cramps in your pouch or stoma, back pain, uveitis. Are the symptoms you have going to inhibit you from participating or endanger someone else. You know like not being able to see out of one eye or feeling like you are going to pass out. Or are they things that you can rub some topical on or take a few tylenol for and carry on? Today, I was able to rub some Topricin on the hot spots, put on my compression leggings, pop two tylenol and roll.
It also depends on your sport. I coach baseball now. And compared to coaching soccer, it’s just a lot easier on the body. With soccer, I was running up and down the field. With baseball, it’s a little more lax. I’m in the outfield with the kids and one of the assistant coaches pitches for me since it’s hard for me to be on my knees. I can also wear my baseball cap, which protects me from the sun and my head cool. I drank a lot of water and gatorade the day before today, and light coffee before the game. That way I was hydrated and not running to the bathroom. The compression work out gear helps me a lot. I don’t wear it for a full day, just during the game. The high back and everything, helps my back.
What are some of my hotspots that I rub topical ointment on?
My lower back
My shins and the back of my legs
My feet (bottom of my feet)
Tonight I’ll take a bath with epsom salt and a little of that DoTerra Deep Blue oil in the bath. Some people love to fill a bucket with ice water and stick their feet in it. That doesn’t work for me because it makes me clench and I have to rush to the bathroom. Strange I know, but the point is that you have to find something that works for you. Often I think that people will decide against doing something because they aren’t sure how it’s gonna turn out. And if you have an autoimmune disease or two or three, the fear is multiplied. However, you really need to fight through that fear.
Listen, you could stay and bed and be sick or you can get out there with your kid and be sick. You can’t control whether you get sick or not. BUT you can do some things to ease the issue and still have a great time with your kid(s). Honestly, coaching has given me a new push. It’s so much fun, getting out there with the kids. One of my players made her first out today. My son almost took off the coaches head with his hit. I’ve seen vast improvements in some of these kids just in a few weeks and my heart swells with pride. I look forward to practice and the games. It actually takes away some of my stress, watching them enjoy playing. It’s another form of therapeutic healing. It’s just another path to fighting these diseases. And the kids feel like, if coach can get out there every week I can get out there every week! I have dug down deep to find the strength…but I think this time, it’s found me!
Until next post.