My mom recently had to clean out the garage so that we could get the old, rotting ceiling removed and clean out the attic space above it that had been home to a colony of rodents. While sorting through all the boxes and bins that have accumulated over the years Mom found an old box … Continue reading Archiving Dad’s Memories
Martina Stawski is my role model for doing my best to live well with chronic illnesses. She, with her husband Simon, runs the YouTube channel Simon and Martina along with the EatYourKimchi website. The two of them are Canadians that have been living in Asia the past ten years; first in South Korea for eight … Continue reading #BuildALadder
No matter how much I improve I will always have days where I can't leave the house; sometimes not even leave my bed. I've accepted that probably won't change any time soon. I am just grateful that I can go out more than I used to and that I can drive myself. However, it is … Continue reading How I Avoid Losing My Mind When I Can’t Leave The House.
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 … Continue reading Little by Little
...but they ask you to take your pants off without even having the courtesy to buy you dinner first! I saw an orthopedist this week. I always feel the need to impress a new doctor. I want to appear informed but not overly pushy about my treatment options. At least this doctor knew what Marfan … Continue reading Seeing A New Doctor Is Like Going On A Blind Date…
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 … Continue reading Health Update
I know my last post was all about acceptance, and everything I said in that post still holds true, but sometimes we get burnt out from working so hard to care for our finicky bodies. I just happen to be having one of those days right now. A day where I don't want to take … Continue reading When you feel burnt out
Some friends don't know how I cope with having multiple health conditions. Conditions that have required daily medications, tests, procedures, surgeries, a feeding tube, and physical therapy. Acceptance. That is how I do it. Once you find out you have illnesses that have no cure, you can be angry and spend all your time wishing … Continue reading Acceptance Is A Powerful Thing
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 … Continue reading Hello Internet. I am your friendly neighborhood cyborg!