Crayons, Playdoh & Wax

but I am not! God is truly amazing!!!

I got an email from one of my friends today on one of my email lists. Terry was saying how she and 2 of her children were diagnosed with Ehlers-Danlos in October. First of all, I had never heard of it before, let alone met someone who had it, and 2nd, I have had to explain it to all but 1 of the doctors/therapists we have seen for K (except of course her Ortho doc who diagnosed it), then for me to not only find out that someone on one of my email lists has it, but to have it be someone I have actually met IRL, is just amazing. She called me this afternoon and I swear we were talking for like 2 hours. The more we talk, the more we have in common. Now it makes me wonder more and more about it (yes, to the point where I am thinking that I am the one who gave it to K). But the good part is, that I have relaxed and realized that K can and most likely will grow up and have a normal life.

This is where Terry and I started talking and we have so many things in common… Fibromyalgia, thyroid, PCOS, narcolepsy (ok, it is actually idopathic Hypersomnia, but how many people actually have a clue what that is? I have to explain narcolepsy and a lot of people know what that is!). Anyway, it has made me realize that maybe it is me. she told me when she went back to her doctor after her diagnosis, that the doctor actually stopped writing and looked up and said that it so explains so many things.

The interesting facts I am figuring out. Ehlers-Danlos is one of those inherited disorders that only 1 parent has to have the gene to pass on. They also call it hypermobility, which is where I come in. On the list of conditions that people with hypermobility have. GERD - Me, IBS - Me, Planter fasciitis - Me, bursitis - Me, anxiety or depression - Me, Knee pain - Me (and K), back pain- Me, hernia - me (granted mine is hiatal, but still), prolapsed discs -Me, Bruising easily - Me, Joints that make clicking noises - Me, Headaches - Me, TMJ - Me (and not K), Increased nerve compression - Me. (ie: carpal tunnel). Oh, and I won’t even start on my scaring issues. I scar so bad. The reason I won’t even consider lasix surgery because I am worried about scaring on my eye causing me to lose it!!Anyway, the more I am reading, the more I am seeing the family stuff here… and the more I realize we need to keep an eye on the nieces and nephews on my side of the family. At least get them an echo, just to make sure… especially since my sister has the heart issues!! (and pretty much whatever I have, so does my mom!)

Ken has actually threatened to take away the computer today because I just keep going from website to website… So I am going to save this and be done. I need to go vegg anyway… my temp is 99.6, which I know for most people is nothing, but I don’t run temps… when I had meningitis I only ran 101 at most… and that is one you run high temps. Thank for the continued prayers!!! Keep them coming, although I am much more calm today!! (just sick) My right cheek feels like I have been punched… it hurts so bad. I see the new Dr on Tuesday, so I am going to continue taking my OTC meds and try and make it til then… and in the mean time… of to start the laundry!