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