I am making progress. I sometimes get down on myself and feel like I am stagnating, but then I have to remind myself how far I have come!
A year ago I couldn’t drive, didn’t have a car, didn’t have Wanda the Wheelchair, kept on having to recover from surgeries, and was still weak from malnutrition/dehydration because I had only just gotten my feeding tube. I hadn’t even been officially diagnosed with Marfan Syndrome yet! I was too weak to do physical therapy and spent most of my time at home in bed. When I did go out I had to recover for daaayyyyss afterwards.
Now I can drive myself around in a car that is all mine, with Wanda in the trunk for wheeling around destinations on longer outings. My feeding tube fuels me up so I only have to eat when I feel up to it. I am kicking ass in physical therapy (PT). And…
Yesterday I got a membership at my local YMCA! They have a heated pool that will be great for conditioning my muscles and joints. They also have the same type of exercise machines I use at PT and free group exercise classes. I am excited to keep working on my body’s strength. I am sore from working out yesterday, but I don’t feel completely wiped out like I used to.
Resting under a heated blanket this morning to soothe my achy muscles, but then I am getting back out there!
I know I still am, and will continue to be, chronically ill. I know I will still have bad days where I can’t get up. Now I just have some hope that I might have less of those days. Hope that maybe I can finally go to college someday.
I saw my gastroenterologist and my dietician two weeks ago. Turns out I had misunderstood some things before. I don’t have to be trying so hard to force myself to eat by mouth or wean myself off my tube feed. It is perfectly okay for me to rely on my tube for most of my nutrition and only eat when I feel up to it.
I had felt like I had to be trying as hard as possible to get back to eating like a ‘normal’ person. It was so stressful and frustrating, not to mention painful for my dysfunctional stomach.
I feel so relieved to know I can relax and stop trying so hard.
My gastroenterologist also upped the settings on my gastric stimulator implant. Cyborg tune-up!
I will be starting physical therapy soon, which I hope will be helpful. My Marfan Syndrome has been causing chronic joint pain all over my body, and it has been getting worse lately.
The summer heat has been rough, but we are getting our AC system that is older than I am replaced this week! Hurray for air conditioning! The guy we talked to about it was really nice and since I have a medical condition that doesn’t do well with heat he promised to get a crew out to us first thing tomorrow morning.
Meanwhile, J and I are going to find somewhere to hang out today that isn’t sweltering hot. Possibly a friend’s house, or a movie theatre.
Welcome to my little blog.
I have been doing this whole chronically-ill-young-adult thing for awhile now, and I thought maybe some of my experiences could help someone else out there or make them feel less alone.
I live with Marfan Syndrome, Dysautonomia w/ Gastroparesis, Hypothyroidism, and Celiac Disease. It took me a long time and a lot of self-advocacy to get properly diagnosed with all of those conditions. I hope to write posts on a vast amount of topics related to my experiences with chronic illnesses.
And cat pictures. There WILL be cat pictures. My cat Ollivander is a fantastic floofball that I must share with the world. He is my dedicated little sidekick.
[image description: picture of me from a couple years ago with short, blue hair; sitting on a couch. I am holding my long-haired, pumpkin and cream colored cat, named Ollivander.] Photo taken by my cousin.