We’ve had good news and bad news this week, which would you like to hear first?
Okay, let’s start with the bad news.
Last Friday I ended up in A&E and discovered that my condition is progressing much faster than I would like. Roll on my time to visit my consultant where I’m going to ask for treatment to stop it progressing further. You can read the full story on my post here. The pain is still pretty bad every-time I stand up, but hasn’t woken me up for the past few nights so I guess that’s not too bad.
So, although I’ve been feeling pretty rough this week we have also had some good news!
Our car was fixed and returned, yeah, I did miss Bernard while he was gone. I’m still waiting to hear if I can drive, I’m dreading it if they say no, but I do have my special controls and I never drive when not feeling well, so fingers tightly crossed. In the meantime I have to rely on hubby, but we are still having trouble with my back seat driving, I need to realise he’s not a bad driver and I don’t need to act like a driving instructor.
But that’s not the best good news.
I haven’t mentioned it too much (probably worried I would jinx it) but my daughter, Star, had genetic testing earlier this year in May. We knew we would have to wait four months for the results but it’s been a hell of a long four months. The geneticist has spotted some familiar signs of a really rare condition called Loeys Dietz Syndrome. It’s a nasty condition which comes with a dodgy heart and can be a killer. At first I fretted like crazy, but then I read some more about the condition and there is only one person in the UK with it, so I figured that Star would be okay. Well, the results came back and she doesn’t have it! How fantastic is that!
Not only that but she doesn’t have any other indicators of heart related conditions like EDS type IV or Marfan Syndrome. There is a chance that these may develop later in life as she does have so many indicators, in particular for Marfan Syndrome, but they realise this and will check her yearly from now on. Just for peace of mind.
Next month Star goes to see her neurological surgeon to see how her neck is. I am feeling quite confident about this because she seems just fine and rarely complains of neck pain any more. Thankfully they are also keeping a check on her for this and again she will be having yearly check ups.
The only problem at the moment seems to be the stomach one, but we are working hard on that one and she sees a specialist nurse every six weeks. We’ll get to the bottom of it I’m sure. (there is a joke there somewhere but I’m not willing to share it!!!)
I’m focusing on the good news this week and hopefully, in just a couple of weeks time, I will have some better news on my health.
Oh, and I’ve worked out how to dictate my blog posts if my hands do give up, so don’t worry, you won’t be getting rid of me that easy 🙂