First off, to my two new followers, welcome to my blog and I hope I don't bore you to death lol. I don't update my blog near as often as I should and hoping to get back into blogging regulary again. Thanks to all my other followers too! I am nearing my 100th post and was wondering if each of you could either e-mail me (if you know the email) or comment and tell me how you found the blog, why you are interested in it (do you have eds? family member? just random searchig?) and most importantly the link to your blog if you have it. I haven't put links along the side bar yet because I can't find out a layout I like for it so going to create a seperate page with info of my followers if you let me. If you have EDS you know that we need to stick together throughout all that we go through.
Secondly, why I haven't posted since the scope. Thankfully my dentist appointment got cancelled (wasn't looking foward to someone working with stuff in my mouth after what happened!), sadly though it was because I ended up with an infected throat as well as a build up of blood behind my left ear drum. I went to my GP first becasue I figured the returning throat pain was more likely to be a cold issue (especially as K missed school that day because he had a sore throat and cold) and didn't want to bother my specialist. When I called and explained what was going on the receptionist told me to get to the office asap to get it looked at. My GP ended up giving me a new anti-biotic (Biaxen - I never want to take it again!!!) and we breifly talked. I asked if I could get a blood requeistion form done up so we could have the results during a follow-up appointment. He asked why and I told him what the internist and rheumy said about the autoimmune and he just shock his head and said that they were not a fluke and that there was definitly something auto-immune going on, he just does not know what it is. He wrote up for a lot more tests than last time, any test that could point to autoimmune. Personally I am thinking it may be one of three - Sjogrens, Rheumatoid Arthritis or Lupus. I don't know what would actually happen if / when I am diagnosed as the medications for the auto-immune and what I need to take for the EDS don't seem to mesh well. My GP did write to send copies of the lab work to the rheumy I saw and I just said that I wouldn't be going back to him but he wanted to keep him in the loop. As I felt like crap and knew that we were going to discuss it at the next appointment I just let it slide. As of now I have one dose of anti-biotics left and have to go and get the bloodwork done tomorrow becasue my appointment with my GP is for the 13th. As a side note - I have not contacted my gastro / internist / cardiologist yet regarding the scope. Going to get the reports from her from my GP and go from there.
Hey! I found your blog from another EDS blog and I honestly couldn't tell you which one because I often find myself bouncing from one blog to another.
ReplyDeleteI have EDS III, Chiari Malformation, tethered cord, Dysautonomia (neurocardiogenic syncope), CRPS, etc.
I have a blog as well :) http://jmurphx11.blogspot.com
I hope things start to get a little better. Sounds like things are stressful and frustrating right now! I know the feeling. Keep smiling :)