Replies to Comments - Em

Well, for some reason I can not post replies to any comments on this blog.  I know a few people had this problem a while ago and if they can let me know what they did to fix it I would be very very happy :D  So, since I can not post the replies directly to the comments, I will post them here.  Both comments are from Em so here are the replies:

Reply to: "Starting to Get Depressed"

AAAHHH I feel horible!  For some reason I didn't get an e-mail telling me that you left this comment!  I would have responded a lot earlier if I had of!!!

There are sites to get looking for doctors, I know a few of them and actually got the name of the geneticist who diagnosed me off of one (but I had to travel 4+ hours for it).  The problem right now is that my parents are getting just as frustrated with doctors and my care as I am.  They get their hopes up that a new doctor might be able to 'fix' me but when nothing happens they don't get to be upset about it becasue I get upset about it and they are trying to cheer me up.  (I know I am VERY lucky to have two supportive and caring parents!).  So after years and years of doctors (I have had bad health my entire life basically) and having literally only 2 out of like 20 doctors help me, they just don't want to have to travel the 4+ hours to get to the next biggest city. 

The county I live in (about 5 towns) has a population of 15,000.  The city closest to us has 70,000 and we have to travel 1.5 hours to a city with a teaching hospital that we have already seemed to 'outgrow' the departments that I need.  So the next two biggest cities are "H" that is about 3.5 hours away (but has the added benefit of having family about 1 hour away) or "T" which is about 4.5 hours away (again though we have family about an hour away).  However, my dad is also 'medically retired' and has had his neck fused twice and has a bad back and shoulders and he is the one that would have to do all the driving so it's hard on him too.

I did actually find one piece of info that might actually be good news.  However, I need to talk to my GP about if he feels I do have lupus on top of EDS before I start that journey.  It is a rheumy clinic in the town 1.5 hours away but that just might be able to help and has a bonus of NOT being attached to the teaching hospital (have had a few 'divisions' of the hospital tell me nothing can be done).

Wow sorry for the long comment!  I still have to reply to your other one too! However, you did give me a good idea for a blog post as I realized I have never posted how I went about getting diagnosed in the first place!

Okay I promise the next reply won't be as long!!  Was just trying to explain the problems of living in small town's and having to do so much traveling to even get to see a doctor that might be able to help.

Reply to: "Things Going Pretty Well"

I did get your reply the night before the test luckily so didn't stress too much about the liquid.  It was horrible but I was able to get it down at least.  Apparently I ended up having a Barium Swallow as well as a Barium Meal as I had to do a lot more than you did, including the table going from vertical to horizontal and back to vertical.  I thought I was just having the Barium Swallow (no table movement) but got everything done by the sounds of it.  Not much to say here as you can read what happened here.  I am slightly worried however as I am not sure that I am 'eliminating' it properly as last night (a week from the test) was the first time I noticed any changes and ended up with a fair deal more blood than normal.  I know TMI right lol

Well that is it, will be posting a new post today or tomorrow to go over a few things.  And again, if you know how to fix the comments issue please let me know!