Frustration and Unpredictability of Dysautonomia

I’m supposed to be over at my dad’s  friend’s home, eating tacos with them.  I’d looked forward to it since getting the invitation this morning.  I took a shower (not a simple task when temperature changes are risky) and got my extra ice vest inserts packed into the insulated bag, and the ‘full’ ice vestContinue reading “Frustration and Unpredictability of Dysautonomia”

Sometimes Being Homebound and Isolated is Really Hard

Considering what has gone on with three people who have been very important in my life this year (they died), I have to know that I’m very fortunate.  Two had battles with horrible cancers between 9 and 10 months long, and one had a sudden collapse with an aortic dissection, but lived two more days….Continue reading “Sometimes Being Homebound and Isolated is Really Hard”

Hot Flashes, Menopause, and Dysautonomia

For many years, I’ve wondered what it was going to be like to have the heat intolerance of dysautonomia, and the hot flashes of menopause. Well, now I know.  It’s like nothing else.  If you’ve ever been too close to a bonfire, and felt like  you were going to spontaneously combust, that’s close… but theContinue reading “Hot Flashes, Menopause, and Dysautonomia”

Groceries and Dysautonomia

Before dysautonomia, I loved grocery shopping.  I’d go to several places for various things, and just truly enjoyed picking out fresh produce, making new things, and trying something different each time I shopped.  Now, I am thankful to get out upright and lucid, and home on my own power. I’ve learned that it’s much betterContinue reading “Groceries and Dysautonomia”

Frustration with Chronic Health Issues and Pain Control

Yes, I know I write about this often.  It’s my primary way to get stuff out of my head and blow off some steam.  I figure that people can choose if they read this or not; I have no choice living with it.   I’m frustrated.  I’ve had more stuff going on the last fewContinue reading “Frustration with Chronic Health Issues and Pain Control”

Redefining Normal

As I continue to struggle with some of the medical issues I’ve got, I’m trying to figure out how to maintain my independence, safety, and general medical stability.  Sometimes that’s easier said than done, and on days when I don’t feel as bad, I forget to pay attention to what has become my reality, andContinue reading “Redefining Normal”

The End of Life As I Knew It

Nine years ago, on April 6, 2004, life as I knew it stopped.  It was my last day working as a full time registered nurse because of medical disability. I tried to go back to work a few months later, but it was a total failure, even though I was working back into full timeContinue reading “The End of Life As I Knew It”

The Night Before Christmas…

…my new puppy was born, though I didn’t know it until today.  My dad was here, and I was going through online ads for miniature schnauzer puppies. Most were either too far away, had something funky going on with their eyes, or some had disconnected phone numbers. Not a good sign.  Then I found anContinue reading “The Night Before Christmas…”

The Life of Cancer

When I was diagnosed with acute promyelocytic leukemia (APL) in late March 2010, I didn’t realize that cancer has a life of its own.  I expected to go through chemotherapy, have regular follow-up care, and move on. Done.  I’m already disabled, so I didn’t really think that cancer was going to be all that bad.Continue reading “The Life of Cancer”

Another Season of Dysautonomia

It’s so frustrating to be at home watching a movie, and begin to feel the familiar feeling of one side of my face being on fire, my heart rate being erratic, and then the general ‘unwell’ feeling.  I’m at home !  I’m in charge of the thermostat (at 64 degrees).  I’m not moving around whenContinue reading “Another Season of Dysautonomia”