Joint hypermobility disorders :
Wow! Phoned Rheumy Today - - Posted by rhea (rhea), 29 November 2002
Hi Everyone,
Mom phoned my rheumy's office again and this time got to speak with my rheumatologist herself! She spent at least 10 mins talking with my mom (rare in canada). She phoned in prescriptions for two more drugs into our pharmacy, faxed a refferal into our local pain clinic, and is getting me an MRI for either this week or next week! Any of you who are familiar with the canadian health care system knows how fabulous a deal all of that was. I've NEVER come across a doc who'd talk on the phone, EVER. And getting an MRI within a week or two is absolutely unheard of, unless you opt for private, and even then its at least a months wait! So yes, I am pretty darn pleased with all of that. Mom's coming down with Dad and I for the MRI which is super, as she's got a better mind of what its like with chronic, debilitating pain and she'll make my dad take stretching breaks for me too.
And with regards to the Marfan's thing... one of my fellow groupies has had it since the age of 5! I just found that out today, so we've been talking back and forth. Kind of neat to find that out LoL.
As far as pain I am still basically debilitated. Either in my bed lying down, or on the couch lying down using crutches to go between the two. Im also still using my icing machine a lot too. Dad's got me a laptop so I am not completely behind in my classes, although I have trouble keeping up being in all of this pain. Im hoping that this pain clinic and the new meds will help me out with some more pain relief.
Thanks guys for everything. Today has defin. been a good news day with the rheumy phone call. Im so happy she didn't make us drive all the way to Toronto to see her.
I hope everyone is hanging in there... I think today is the American Thanks Giving, so Happy Thanksgiving to you guys!
Lots of (((hugs)))
rhea
Posted by Netty (Netty), 29 November 2002
That sounds great Rhea. After all the bad luckk you've had so far, something good had to happen. I happy you found someone with the same condition as you, they can be a big help with understanding it all and if you can see how good she gets along then it helps you to not worry as much. Your mum sounds like a good person to have around. Im a mum too and when it comes to your kids that are in pain, look out anyone who tries to stand in their way. I think of us mums sometimes as a mother dog standing over our babies with barred teeth. Not a nice picture but true I think. Good luck with the MRI. Keep us informed
Posted by Shazinoz (Shazinoz), 29 November 2002
Congrats Rhea,
That sounds like FINALLY you are getting somewhere and some help.
Good luck and here is hoping.
Posted by Rich_NYC (Rich_NYC), 29 November 2002
Congratulations!! 
Great news, sounds like you had a super day. Really happy for you, you earned it 
My pain clinic has helped me a lot, so I think that should make a real difference for you. Happy Thanksgiving to you. Good luck and best wishes.
Rich
Posted by Iona_-Uk (Iona_-Uk), 29 November 2002
Wow Rhea! Hold on to that Rheumy!.
It's the same over here in the UK, you very rarely get docs to talk on the phone let alone go the extra miles yours has gone for you.
Here's hoping that MRI gets the answers for you.
Love Iona x
Posted by rhea (rhea), 29 November 2002
Thanks everybody! You know, my local GP, who lives in the same city reffuses to even renew a perscription over the phone! So I guess thats why I was so surprised that this rheumy, who is so incredibly busy and is stationed 4 hours away from my city, actually did all of that. For so long I felt like it was me against the medical field battling out every freaking appointment for half decent care. Now I feel like I finally have a player on my field.
Thanks again everyone for your support through thick and thin. If I hadn't found this forum I would have given up a loooong time ago.
I hope you guys are all hanging in there, and that the snow isn't causing too many achey joints. It always flares mine up for some reason. Here's to sunny days!
(((hugs)))
rhea
Posted by AC (AC), 29 November 2002
I am lucky enough to have an O/S that makes the time for paitents, and I think that is so important. I am also in Canada and if I call my O/S he will always call me back and talk for as long as I need. Also during appt's he never rushes and he doesn't overbook like most doctor's so you don't end up waiting for hours in the waiting room like I do with my GP. Canada's health care does have issues, but it ain't all bad! 
Posted by martiniswiller (martiniswiller), 30 November 2002
Rhea,
I am so happy for you... it just goes to show you that if you are persistant and patient enough, you will eventually get what you need. Sounds like this Doc is a gem- you deserve it. Hang in there, and hope your MRI goes well....
Lesley
Posted by rhea (rhea), 1 December 2002
Hi AC and Lesley,
Thanks for your congrats. I've been on this second drug the rheumy prescribed (apo-diclofenac sodium) but no relief yet, after two days of taking it. But then I should give it two weeks before giving up on it. She's got me taking the maximum dose of it, so maybe once it builds up in my system relief will come. I'm getting a tad worse I think, and I think Im going to have to drop my courses. 
Im not able to keep up at all anymore, let alone think straight. This is disheartening for me because I've always prided myself as being a good student. And Im about 9 days to late for dropping courses. I mean I can still drop them, but the marks are going to show up on my transcript. I've worked so hard for over three years to maintain a respectable transcript, and now my last *most important* year is down the drain. Who knows.. one day at a time right?
Well I hope everyone else is hanging in there okay. Goodluck to those of you with surgeries this week.
(((hugs)))
rhea
Updated Sat Nov 21 2009
