Photo Art from the Children’s Hospital

Yesterday I went to the local children’s hospital to see their genetic specialist for Ehlers Danlos testing. While there, I got bored and took a couple photos of a set of sculptures I liked:

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My favorite is the feet one. I love odd angles and close ups of objects, because it shows details most people don’t notice. I did add a bit of a filter to the first picture to make the colors stand out more from the darker aspects.

As for the visit with the geneticist, it went fine. They did a mouth swab to test my DNA, so no pain involved. The geneticist is pretty sure I have hEDS (hypermobile Ehlers Danlos) since I meet all the criteria, although he wanted to rule out other kinds like vascular and classical EDS, hence the test. I just hope it isn’t vascular, as the average lifespan of someone with vascular EDS is only 48.

 

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Rough Week, But Some Good News

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This has undoubtedly been a rough week for me so far, but some good things have happened too. Here is a short run-down of the last few days:

Sunday and Monday, one of our pipes froze because of the freakishly cold weather so we had no water until that section thawed out. Luckily, it didn’t cause the pipes to burst or anything like that. My husband thinks he solved the issue by replacing the insulation around the pipe, but I guess we’ll find out the next time we all freeze.

Yesterday I had my appointment with the rheumatologist to get my Ehlers Danlos testing done. I’m officially a zebra! Right now my diagnosis is Hypermobile Ehlers Danlos, although I do plan to try to pursue genetic testing to make sure none of the other EDS genes are playing a part. The doctor also highly suspected I have POTS (postural orthostatic tachycardia syndrome), which would help explain my dizzy spells, vertigo, feeling faint, and maybe even a few episodes of passing out when I was younger. It sucks that there is no cure or really even further treatment other than what I’m already doing, but it is wonderful to have some answers that finally make sense!

Tuesday I made the mistake of posting in a Facebook chronic illness group about my surprise that a zoo we want to visit charges $25 for the use of a wheelchair for a couple hours. Soon I was accused of being entitled, expecting everyone else to pay for my disability, and even being too poor to go to the zoo if I couldn’t afford the extra charge. The attacks got to the point that it actually made me cry because it hurt my feelings so much. I wasn’t even saying that the zoo had no right to charge for use of their equipment, I was just questioning whether the price was a bit high for the time it would be used. Of course, then I heard that some zoos and theme parks charge way more, some even over $100 a day! I can’t help but feel personally that is taking advantage of the disabled. Maybe I’m wrong, but I still feel that way.

Last night all this stress took its toll on me. I had the worse migraine I have had in years. Luckily, I still had some migraine pills from the last time I filled the prescription which was several years ago. They were technically expired, but still did their job. Today I have that slight headachy, hung over feeling I always get after a severe migraine.