So now that the credibility issue is answered. At least I sure hope so. Who else would I go see. I guess Dr. B is it at least in Nebraska. I am glad of that and I am glad that there is someone here. Mayo wouldn't see me due to my pending car accident settlement, or lack there of.. Which sucks. Just an FYI for anyone involved in any sort of litigation or accident, Mayo won't touch you.
What good is that? Not much I'd say. So that place is not going to get my business. I guess other places I could go if I need a more of an expert would be Denver or New York, or IOWA! Well I have my list ready just in case! Oddly enough going to Denver or New York I'd have places to stay.. Not in IOWA.. but that is much closer! And how cool is it that IOWA has a great Ehlers Danlos group of specialists!
So I am thrilled! Here is what I learned or was reaffirmed in yesterdays appointment.. a bit of it anyway.
**A motorized wheel chair is a good idea for me. Not for use around the house but for use other places that will wear on my joints and wear on my energy. So when you see a person who is in a motorized chair and then they get up and out of it and walk there is a reason they are using it! I hope to be able to get one sometime soon and be able to ride it downtown and back home. Or to the grocery store! Just can't do that on my own now.
** Pain, I am always going to have it. Get used to it. =) Comforting to some degree to hear it out straight.
** Pain medication.. TAKE THEM. Do as much as possible, walk as much as possible and use my meds to make it through PT or what ever I can do on my own as long as I can. Also try to manage more with out them as I can as well.
** He said my body will start to acclimate to the higher levels of pain over time. Me: It always has in the past. It has again to some degree already. I am taking less pain meds for the same thing than I was. That is good!
** I get to get an echo cardiogram because of a possible heart murmur. Which if I do have shouldn't be a big shock because of other known about family histories..
** That I should tell those related to me that they too could have Ehlers Danlos Syndrome.. as they could also be facing some similarities and so could their children or grandchildren... Yes he said this! So all of my family that get's pissed that I am sharing this information with them... That is what the Dr. Told me to do! Those that are grateful to know, thank you for being gracious and not shooting the messenger!
** I got referred to a MEAN Son of a .. that is an excellent Physical Therapist who deals with people like me. I guess this guy puts the Pain in Pain and Torture. Oh ... joy.. In fact Dr. B called him a Physical Torturist.
** Yet another Vitamin to add to my increased doses of B's and D.. C! This is the next magic vitamin for me! So I will be increasing doses of this! I like this vitamin it tastes good! I don't mind the others either, so far good results have been had!
**Oh Shark Cartilage as well.. Glucosamine and Chondroiten..
** And Fall Proof my house. Ha Ha!!
Dr. B was a nice guy and so were the cadre of other doctors that followed him around. They poked, looked, I got to show off a couple of my parlor tricks..
Another EDSer's latest doctor advise.. contradicts a bit with mine so take the what I say next with a dose of salt. She just got back from the Ehlers Danlos National Conference.
Do what I can do as much as I can, do not hurt myself. Do not do anything that stretches me out.. BE CAREFUL to my joints. Stay the course with Dr. G. He's excellent at what he does and will guide me right.
Well, I've got more to work at that is for sure.
****Guess what! He also recommended that I start wearing heels again! Woot!! I'd stopped because of PTists telling me that they were so bad and they were going to get me lined up right. Dr. B. said they will never get me lined up right. AND that being lined up wrong may actually help my hips stop slipping out so easy! Worth a try, and my feet could really use some cute shoes!
So if you see me scooting around in a scooter with Luka by my side and getting off and walking in some heels.. well.. Pray that it works and that my hips will stay in their sockets. Because it hurts like a &&&999---***** when they slip out!
I've already been practicing.. well, I have been putting them on.. this whole time for a minute or two.. but thought walking in them much would make me worse. Dr. B suggests WEDGE heels, not the spiky kind. I guess those will have to keep collecting dust!
Thank goodness my ankles are in good working order. Come here my pretties! Momma's got her toes painted!