So, prior to the last few days, it has unfortunately been quite a while since I posted. Essentially, the usual suspects that have kept me from blogging but perhaps a little more exciting than usual…
- The flu I was worried about Em, because she started off with feeling poorly with the junk that was going around and I was worried that she would be hit hard. Imagine my surprise when she was fine and I was the one who was essentially run over by a big ugly tank called the flu. I have been fighting ‘it’ – all the imaginable symptoms of the flu – for 3 weeks now. Ended up in urgent care and put on antibiotics. Thankfully, I avoided pneumonia and Em really just had a few days of not feeling great, but nothing like me. I was ready to pray for death at times, I tell you. (It did occur to me that I am a complete wimp, because Em and other EDSers live with many of these symptoms everyday. Don’t know how y’all do it!) Whatever ‘it’ is, I do not recommend ‘it’. I am just now able to eat almost normally and am slowly gaining my strength back, although I am still weak and puny. (Funny story: my doctor at Urgent Care happened to be Em’s neurology nurse practitioner, Brian – the one who let us try Diamox and has been so great about listening and working with us to find answers. When it isn’t golf season, he works a little at Urgent Care to help out. I was very uncomfortable with him seeing me so sick, for some strange reason. Let’s just say, he barely recognized me – unshowered, no make up, in angry bird fleece PJ pants instead of my typical put-together-so-the-doctor-respects-me-as-an-equal look. My husband thought it was funny and I really didn’t. Doesn’t seem quite so big a deal now, but at the moment, in my fever ravaged brain, it was the worst thing ever!)
- An Accident Last Saturday, when I had decided I was going to give in and finally go to Urgent Care, my 18 year old son was in an accident on the way to a church activity. It had snowed several inches the previous night and on the back road on the way to the church, it was pretty nasty. His cell phone connection was horrible when he called and we could just hear enough to know that something had happened and my husband headed out to see what was up. What was up was that he got caught in rutted, slushy snow and rolled his car into a field. So his poor father went out expecting car trouble or maybe that he had spun out and was in a ditch and instead found his car upside down in the field. Luke is fine. I honestly don’t know how, but he wasn’t even really sore the next day and he had one little nick on his hand where the glass from the windshield scratched him. The guy who towed the car said if there hadn’t been a foot of snow in the field Luke would probably be dead. So, yeah, we are pretty breathlessly thankful that all we had to do is deal with insurance to replace his totaled car. It was one of those moments where you realize how fragile life is and how quickly it can change. My big concern, after making sure he was alive, was his neck. While Luke hasn’t been diagnosed with EDS, he almost certainly has it and a car accident is the beginning of bad stuff for so many people with EDS that I was beside myself. But, it seems that his neck is fine, more than a week later. He said when he felt the car going he just pushed his head and back against the back of the car seat and braced his hands on the steering wheel, so he didn’t flop around at all. Yes, he is incredibly lucky and we thank God that he is still with us.
- My parents, who live just a couple houses down from us, got a new pug puppy (Bella) as a companion/baby sister to their current pug, Benjy. She is a tiny piranha with fur and a curly tail and Em is wild over her. Bella keeps us all on our toes – literally, on our toes, dancing away from her sharp little teeth – and she makes life very interesting for everyone. Em definitely has a blast playing with Bella and making sure Benjy still knows that he is loved. Bella definitely provides lots of laughs and snuggles (when she isn’t in piranha mode, trying to chew our toes off).
I guess that is the major stuff that we have been dealing with. Em is battling fatigue and pain. Not sure if it is left over from her doing the play or if it is weather related or stress related or residual flu symptoms or if it just is. We will all be glad when spring is here and we can enjoy warmth and nice weather for a change. Another round of nasty winter weather is headed our way this weekend and we have sub zero temps – again. Spring cannot get here soon enough.
We are headed out to a pain management appointment this afternoon – but I am hoping to put up an update on the Justina Pelletier case later today. There is some movement, seemingly in a positive direction, although the situation is still pretty desperate and will remain so until she gets the medical care she needs.
Also, tomorrow is Rare Disease Day and I have a post ready (well, mostly) to go in support of the cause. If you can, use whatever means at your disposal to highlight rare diseases tomorrow.