My Legs Are Retiring Part-Time … Wheelchair Will Be Here Next Week

This week, I went to  my doctor’s office so she could do the ‘face to face’ appointment required to order a wheelchair for me.   Normally I detest MD appointments (leaving home is painful- the docs are OK ), but I actually respect that Medicare requires this so that they aren’t paying for scam wheelchairs.Continue reading “My Legs Are Retiring Part-Time … Wheelchair Will Be Here Next Week”

Dysautonomia Awareness Month…. I’m Very ‘Aware’ All Year, Every Year

OK.  October is Dysautonomia Awareness Month… With ‘Breast Cancer Awareness Month’ at the same time, nobody will care about dysautonomia.  My guess is that men are more than likely behind the sanctity of boobs, so along with being a rare disorder that people really are NOT aware of, there is the whole ta ta thingContinue reading “Dysautonomia Awareness Month…. I’m Very ‘Aware’ All Year, Every Year”

Sorting Through The Symptoms…

 I’m whining.  *** Warning *** I’m not chipper and smiley right now… Read at your own risk 😉 This has been a weird few weeks.  Actually, things started to get worse with the dysautonomia during chemo for leukemia, which was fairly expected, but it’s getting worse.  Chemo messes with autonomic dysfunction, especially with diabetics, or thoseContinue reading “Sorting Through The Symptoms…”

What NOT To Say To Someone Who Is Disabled or Dealing With a Serious Illness

I think most people are trying to be helpful or supportive when they make comments to someone about their health and/or treatments, but there are some things that  those who have not experienced the situation should just stay quiet about.  Some things are just not helpful, and some are ‘enough’ to ruin a relationship.  TheseContinue reading “What NOT To Say To Someone Who Is Disabled or Dealing With a Serious Illness”

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”

People Who Literally Make Me Sick (Dysautonomia)

That may sound ridiculous, but within the walls of dysautonomia,  anything that triggers a fight or flight response is something to be avoided at all costs. Unfortunately, that includes  avoiding people who come across as harshly combative, unapproachable, condescending, promoting hate, and/or having no respect for anybody but themselves and their very narrow circle ofContinue reading “People Who Literally Make Me Sick (Dysautonomia)”

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”

Autonomic Dysfunction and Daily Life

I get a lot of search engine topics relating to how dysautonomia affects daily life.  I’ve decided to write about how it affects me, and why I’m disabled by it.  This in no way is a comprehensive description of autonomic dysfunction- each person has various ways that it impacts them more, as well as differentContinue reading “Autonomic Dysfunction and Daily Life”

The New Oncologist

I saw the new oncologist yesterday. I was a bit nervous, but that ended up being wasted energy. The new guy is young, and the cancer center he’s associated with is pleasant. I told him that I’d been quite satisfied with the care the other guy gave regarding the cancer, but I was having aContinue reading “The New Oncologist”