It’s been a whirlwind of days, weeks, months, even the whole year of 2019. So many ups and downs and a little in between. It feels too personal for me to share with the world, so I’m going to rattle off random topics I’ve been circulating…
1. Life is too damn short and complicated to be following suit of what others do. It took a lot of trial and error and tears and questions to come to an acceptance that I live my life and parent very differently than John & Jane Smith—and I can finally say, “that’s ok.” I have to do what works for me and just because it’s different from you, doesn’t mean it’s wrong. I battled with that difference for a while and accepting it, made for a hell of an easier ride.
2. I see different doctors routinely throughout the year and it never seemed to phase me being examined, pricked and prodded but now that some of my symptoms of FA are more pronounced, it’s more frustrating. I’ve done many rounds of PT, OT and speech to work on a plan of the declination I have at that time. It isn’t a permanent fix. I’m not getting myself back to how I was 9 years ago; I’m working on how to deal with a new challenge. It’s a freaking cycle and that’s the frustrating part. I am doing tons of things in a different manner that could take me 5 minutes to do pre-FA. Patience is something that is tested daily and if I’m not having the 4 hours of ‘getting ready’, I settle for leggings, no make up and a hat to cover up my mop. Gotta pick my battles.
3. I was thinking just a week ago as I strolled thru Washington University Center of Advanced Medicine, how many times I’ve been here and how many more times I will be coming back. When you go to a hospital, facility, doctors office…the initial thought is to go to get better, but I go to see if FA has gotten worse. My ‘jumping for joy’ is just a sigh of relief my heart hasn’t been affected yet. I would love that after my 10 years of visits, I could be finished with my visits there. To hear “you’re better” not “you’re declining” or “you’re the same as last visit” …
◦Yes, there are trial drugs and yes, I participate in some, but the ones that seem to help some patients are not a one size fits all. Symptoms vary from severity in every person, so you gotta go in with the mindset that it may or may not work for you the same way it’s working for someone else.
4. For the past couple months, I’ve been experiencing intense heartburn/acid reflux. If you had it as bad as I did while pregnant, it feels like that!! My esophagus literally feels on fire. It can be as simple as eating a piece of toast and it feels like holes are burning in my esophagus🥴! Anyway it had gotten so bad, that I couldn’t sleep for more than a few hours without regurgitating. Sorry, gross.
I went to a gastroenterologist 2 weeks ago and am having an endoscopy tomorrow. My mom keeps telling me how easy and quick of procedure this is, but I am very nervous 😩. Coming from the girl that went thru days of labor and blood draws every few hours for a trial in the past, and multiple MRI’s.
Put me in an enclosed MRI, wide awake for 45 mins and I am totally calm, cool and collected; but knock me out for 5 minutes, so I feel nothing…Nerve wrecking🤷🏻♀️
Results to come🤞🏻