It’s really difficult to keep my panic under control when it’s hard to breathe. Of course any panic at all only makes it even harder to breathe! Until WNV, I never felt panic like this. I’m glad I wasn’t like this all of my life! Those of us with the same sort of WNV share many symptoms. Some things were worse when we first got the virus and some don’t show up for months or years later. A bunch of us experienced heightened sensitivity to everything…smells, tastes, colors, sound, movement, touch, pain…all sorts of things. I have also felt the opposite like loss of acuity near and far, less able to taste, smaller range of emotions, less ability to think, etc… It really depends on the day. Most of us suffer from cycles of the good/bad, highs/lows. There are times that it’s as if we just got WNV all over again….fevers, rashes, gut distress, headaches, painful skin and joints, hyper-excitable nerves and all that.
What’s sad is that many folks who got WNV the first year it hit the US….1999….still have bouts of acute symptoms. We might improve each year, but from time to time are thrown right back to the day we first got sick. It’s exhausting, scary….and can be downright terrifying. Just when it seems safe….WHAM!
For me, I have been living that all my life thanks to autoimmune diseases. I need to be thankful they, too, ran in cycles. It would be awful to feel the worst all the time! 😦 The reprieves from pain and sickness are teasers. All my life I overdid things when I felt better. I seem to never learn. It’s a crummy cycle of almost dead, better, OK, yucky all over again. Sigh….
Now I am facing new problems. They don’t get better and worse….only worse. My hernia wants to kill me. There seems to be no way to stop it. I have gone through the stages of grief a bazillion times in the last few months. Yesterday was the solid realization that things are getting much worse. Today confirmed it. I can no longer stand up at all in the shower. I have to stay in the chair. When fixing a typical salad lunch…pouring a bit of greens from bag A and B into a bowl and adding other yummies is a major project. I can no longer stand up for the couple of minutes it takes.
I wrote an email to the wheelchair rep and told him what happened on Saturday. He said he would be here at 1 PM to look at it. According to the hour by hour weather forecast, we would have a 3 hour dry spell between waves of rain. I went to Trader Joe’s for more salad greens and was back in time for wheelchair repair. I took cloudy, gloomy pictures there and back. It feels like a whole other world. Sounds carry differently without leaves and the landscape is starker, with splashes of color here and there. Seems like the perfect time to talk about death.
I met up with a nurse today. She is from the same company that sent the guy nurse to change my wound vac dressings three years ago. I went through lots of companies that abandoned me back then…then found them. She says the problem is my insurance, but she is going to find out what her company can do for me.
She was very matter-of-fact, saying any nurse just looking at me would know I needed to be in hospice as soon as possible. I admit a few tears leaked out. I don’t know why I think I am fooling people and am looking like the picture of health :-p I am starting to feel terrified that I will suffocate while I am lucid. I keep feeling my diaphragm suddenly get paralyzed. For the seconds my diaphragm doesn’t pump air into my lungs, it feels like doomsday.
As always, the hurt, scared, painful, falling apart Wendy is ready for the next step. The Wendy who wants to go out exploring and taking pictures and petting Olive and talking to friends…hates to leave.
I am thinking I am more ready for hospice care than any time before now. I’ve made a return appointment with the doc that first referred me to hospice. I’m thinking the whole heart monitor thing is futile and I would rather be talking to a hospice social worker than be trying to extend my life with a pacemaker. I want to see what my NP has to say at this juncture and I want him to write yet another hospice order.
The darn electrodes are peeling skin off me and also giving me bruises.
Here’s where the cannula is today….on the hernia side.
This former site has been purple for days. This is the spot that would not absorb insulin.
I was reading a hospice article that made me cry….mostly from this sentence….“their certainty so effortlessly pierced our thin membrane of denial”. It was about the hospice people being so matter of fact and sure that death wasn’t far away. The nurse did that to me today. Besides my breathing, everybody is all upset about my worsening edema. Bumex isn’t making any difference.