I have a pretty strong disdain for sports, especially those including round things flying at you, but for the sake of this post, I’m going to talk about baseball. I really don’t know much about baseball so bear with me here.
If my life with gastroparesis was a baseball game, gastroparesis would probably be the pitcher, throwing problems at the players relentlessly. Now I, preferring to avoid that ball, would typically be in the stands watching. Seeing as fate forced me into this game, I’ve now taken the job as the benchwarmer.
Despite my Type A personality, I suffer from severe sea sickness so I like to avoid rocking the boat, even when it comes to things related to my health.
Unfortunately though, my patience is wearing thin. Over the past month or so, my symptoms are getting exponentially worse. I went from spending most of the day in bed crocheting but being able to get up and do my physiotherapy exercises with the occasional trip to Michaels thrown in, to spending all day in bed, unable to do anything because of the overwhelming nausea. Even my crochet projects aren’t getting worked on and that’s saying something.
During this period of time, I’ve made several trips to the ER. Some much more successful than others. Most of them, I at least was able to get IV fluids which helps the dehydration problem tremendously but, like one of the ER doctors so bluntly told me, they don’t know how to help people like me. I don’t fit the typical mold seeing as my illness is fairly uncommon so I just need to wait it out until my next specialist appointment. That is totally easier said than done.
For a doctor, I imagine the 6 weeks between appointments flies. When you’re the one living with the illness, it’s a totally different situation, those 6 weeks feels like an eternity. Plus, during most appointments lately, it feels like we’re just chasing our tails with no real solution in site. I’ve even started having allergic reactions to the last nausea medication to try because I reacted to all the others as well. I’m not looking for a miracle cure because I know those don’t exist, but we need to try something new because what I’m doing right now isn’t working.
So I’ve decided to take matters into my own hands. It’s finally time for me to, somewhat reluctantly, pick up the bat and start swinging. I’m reaching out to people I know who are going through similar health situations. I’m researching which treatment I haven’t yet tried and could be promising. I’m trying to find potential new doctors to add to my health care team.
When you’re living with a chronic illness that no doctors in your area seem to know anything about, I’ve leaned that it’s important to be your own advocate. Heck, when you’re dealing with any illness, it’s important to be you’re own advocate. You know your body best. I’m working on learning to use my voice and to stand up for myself. I’m trying to be as proactive as possible and use my appointment time to its full potential.
I’m stepping up to the plate.