Thursday, April 21, 2011

Yes, I'm Still Alive, But not Kicking

I guess it's time I updated my blog. I have really not been doing very well. My joints are painful and swollen again, I'm extremely fatigued and my muscle pain is pretty intense. But, I'm moving, albeit slowly.

Today we took our baby (who's 18) to college for orientation; she was able to sign up for classes Another "last" for us. This weekend Tim and I are planning on sitting down with her to work on her graduation announcements. We are also going to work on Aaron's as he probably wont be home until after he graduates. Once we get those done, we will have to put the party planning into high gear. Right now, the whole month of May seems overwhelming to me. Don't get me wrong, I'm looking forward to all of it, I just wish I didn't have to worry about whether or not I'll be able to do (and enjoy) everything.

In other news, we had some pretty wicked weather the other night. Winds were clocked at 80 mph at the airport, which happens to be about one mile from our house!! It was pretty intense for a while. The girls and I (and Elmo) hid out in our safe place until the storm past. We were lucky in that we never lost power. There are many homes in the area still without power and it's been two days since the storm. It looks like we will get more storms tonight and tomorrow... really all the way into next week (this is one time when I'm hoping the weather man is wrong). So much for all of the Easter egg hunts.

So, in the scramble to go to our safe place I grabbed my laptop, kids and the dog. My friend Cathy asked me if I took my Kindle...I forgot. I can't believe I forgot my beloved Kindle. Seriously though, it got me to thinking about what I really need to have ready in an emergency. My medicine tops that list of course. Everyone always thinks about photos and important documents (birth & marriage certificates, insurance papers, etc). I should probably have those readily available too. I know where they are, but I don't think I could get to them in a hurry. We live in a tornado prone area so I really should be thinking more about this. I think those of us with a chronic illness probably ought to really think about what we should have ready to grab in an emergency. Here's a list of some things I've thought of: medications, medical records, doctor's phone numbers, information about our illness for emergency and other medical professionals (especially those of us with rare illnesses), pillows or other comfort items...I'm thinking ice packs and heating pads. If, God forbid, we have to end up living in a hotel for a while, it would be nice to have all of our "necessities" with us. Over the next few days, I'm going to try and get all of my things together in one spot.

I'm still gathering info for the Geneticist. I took pictures of our youngest bendy daughter. She really looks just like all of the pics I've found on the Internet. I've talked with a woman who went to Dr. T and she took her daughters along. They were all diagnosed with Ehlers-Danlos. I'm guessing I would have to make appointment for all of us, I'm not sure I want to do that just yet. So, I'm taking pictures instead. If he decides he wants to see them, then, of course, we will take them. It could be that they could be diagnosed by pictures alone. Also, if I get a biopsy done, they could be diagnosed with it based on their symptoms and the pictures he sees along with the proof of my positive biopsy. Not all of the hypermobile/Ehler's Danlos illnesses have tests yet; those are diagnosed by exam, family history and symptoms. Anyway, I think I might call the doctor in a few weeks and ask how we should handle the whole situation. Since I don't have much family medical history available, they will be proof of the genetic link.

I need to go find something for dinner. Then, it's off to dance lessons (Elizabeth, not me) and work (me). The bed will be looking mighty fine by the time I finally get in it tonight.


"Dream as if you'll live forever, live as if you'll die today."~James Dean

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