Showing posts with label XLH. Show all posts
Showing posts with label XLH. Show all posts

Sunday, March 03, 2019

My Sunday Stitchy Update 03/03/19

So this week in Tucson... 

I live near an Air Force base and this week they are practicing for upcoming airshows. These are just a few of the vintage planes they will be flying in shows around the country. I will be the first to admit I know NOTHING about vintage planes other than I see them in what they call the "Boneyard" that I pass by not to far from our home so I asked and found out these planes are:

lead plane is the Lockheed P-38 Lightning, left formation is Republic P-47 Thunderbolt, the right formation is North American P-51 Mustang and bringing up the rear is Lockheed Martin F-22 Raptor. It makes for beautiful though noisy sky.

On another note...

the last day of February each year is Rare Disease Day which is set aside to raise awareness to them. I am the lucky recipient of one of these rare diseases called X-Linked Hypophosphatemia (XLH) more commonly known as rickets. Ours is hereditary and not from a diet lacking in Vitamin D as many have suggested to me. As far back as we can trace is my Grandmother who did not want to discuss it AT ALL. 

So since this disease is X-Linked it changes sex with each generation. My Grandmother had three sons and out of them only my Dad was affected. He had two daughter and both my sister and I were born with it. I then passed it on to my only son. My son has the worst case in our family and has decided that he does not want children as any daughters he would father would be guaranteed to have this and he didn't want to pass it on. 

Rare Disease Day celebrated this year by asking people to Show Their Stripes. Stripes because the zebra is the official symbol of rare diseases in the United States and is noted for its black and white stripes, which are central to its uniqueness; which makes them rare!

So anyways... I have some striped pajamas that I took my picture in. So if you don't know me in real life now is your chance to see what I look like! Don't worry - it's not to scary! LOL

You can't tell in this picture but since the XLH affects our bones and their growth I am pretty short. A few years ago I topped the charts at 4 ft 6 but I am losing bone mass and not sure how tall I am now as I can no longer stand straight. I was extremely bow legged as a child and had MANY operations in my younger days to get my legs straightened. Since they really couldn't strengthen the bones though many times the surgery was not as successful as they hoped but in the end my legs are basically straight. We all know how the bones weaken as we get older and arthritis comes to take up residence and so now I have severe arthritis in just about every bone but I am still getting around with the help of a walker (purple of course)! 

Oh yeah, then there was a bit of stitching too...

I stitched the February bunny in the series! 

Mini Bunnies
Monthly Series, February
Designer - Eileen Gurak
Mini Finish as of 02/28/19

I started March yesterday but there is not much progress so I'll show it once it is stitched up.

Thanks for taking a peek at my stitching
see ya next week with another faithful update!