Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 08-01-2014, 11:19 PM #1
Lottie Lottie is offline
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What a beautiful idea! Does Epcot offer a maternity photo special, or you just like Epcot?
Yes, Disney is the industry leader in customer service and they provide gold standard accomodations to the mobility impaired. My last visit (Dec 2012) went very smoothly. Can't wait to go again. Tell Mickey and Minnie I say "hi"!!!!
~Lottie
__________________
1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 08-05-2014, 03:58 PM #2
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Quote:
Originally Posted by Lottie View Post
What a beautiful idea! Does Epcot offer a maternity photo special, or you just like Epcot?
Yes, Disney is the industry leader in customer service and they provide gold standard accomodations to the mobility impaired. My last visit (Dec 2012) went very smoothly. Can't wait to go again. Tell Mickey and Minnie I say "hi"!!!!
~Lottie
They will only have photo shoots at Epcot, Animal Kingdom, or Hollywood Studios...not Magic Kingdom (that would have been my first choice). Epcot it beautiful and I will get to be in the World Showcase part before it opens up to everyone else...which is very neat. I'm VERY much looking forward to this special experience for me and baby.
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Old 08-07-2014, 08:21 AM #3
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How cool!

What a great experience :-)
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Old 08-15-2014, 05:34 PM #4
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UGH...just need to vent a little bit. I went in for my glucose test today, got to listen to the baby's heartbeat (which is perfect) and they measured my belly. At my last appointment the doctor told me to schedule my 28 week appointment today along with the appointment with the specialist. So when I'm headed out I stop by the desk to do that. They tell me that I don't schedule an appointment through them...what happens is THEY fax over all of my information to the specialist and then the specialist calls ME to set up the appointment. Okay...that's fine. But wait...apparently the doctor (who I was not very thrilled with last time as I think I mentioned) notated on my chart that I DECLINED the specialist. WHAT??!! We seriously spent a good 15-20 minutes talking about how I should see the specialist, why it was important, etc. I am so frigging annoyed and have tried to spend the whole day NOT thinking about this because it is stressing me out which of course we know causes flare ups.

This is a huge reminder of WHY I don't see a doctor for my RSD and why I have been so happy since basically cutting all doctors out of my life. These situations...doctors not listening to me, making errors on my chart, dealing with ridiculous front desk staff...it stresses me out beyond belief. I honestly left the doctor's office today feeling like I have ZERO confidence in these doctors to take care of me and my baby...what a HORRIBLE feeling to have 25 weeks into a pregnancy. And I have no idea what to do about it either. Maybe it's just a supreme over reaction on my part and I'm being overly emotional about the whole thing...but I really have no confidence at all in these people to do the things that need to be done to take care of me with my RSD during delivery. I don't feel like they even care...but at this point what am I supposed to do about it? Go see another doctor? Wait to talk to the specialist? I'm just sort of freaking out now that something is going to go terribly wrong and that these people will not be equipped or prepared to handle it...

Ugh...I need some time to think all of this out once I cool down a bit. Monday I will be calling the office to confirm that they are, in fact, sending over all my information to the specialist because the lady at the front desk said she would have to "check with the doctor" before she could do anything. Thank goodness I have the weekend off to just relax and sort out all my thoughts about this...
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Old 08-17-2014, 01:55 PM #5
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That sucks!

Do you have any friends in the area who could possibly recommend another OB/GYN to go to?

Maybe the specialist will be good and have a recommendation.

Most of my doctors I have been seeing for 15 or more years...because I like them and their staff. I lucked out about 5 years back when I started seeing a new Rheumatologist. He us really great. He actually recommended the doctor I see for my RSD (he does Physical medicine, rehabilitation and pain management).

I'm sorry you are having to deal with this. Try and do your best to rest and relax while you are off. Of course we all know easier said than done!
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Old 08-17-2014, 08:49 PM #6
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Sorry this happened, Catra. I totally get why you are so upset. But, remember to put your enuergy into what is best for you and baby. I still think the specialist is a good idea and you should stay proactive, avoiding the slippery slope of being reactive which often ends up a waste of precious energy. Wishing you wellness ~ lottie
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1999 Chronic spine pain related to Degenerative Disc
Disease,
Sept 2001. C6 / C7 discectomy & fusion.
Jan. 2005 L5/S1 discectomy and Artificial Disc Replacement.
July 2011 removal of broken
.
Artificial Disc Replacement.
Woke up in recovery room with RSD Monster.:
.

Aug 2011 Stabilization of spine at L3/L4/L5.
October 2014 Rheumatoid Arthritis.
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Old 08-18-2014, 01:31 PM #7
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Hi catra
Been following your posts & frustrations. Most times I don't post much
because of my hand.
Oh, I have fought ignorant Dr. offices so much too!! For 1 thing I think you should make a special point to have them change incorrect info. in your
chart. I think it's important b/c they'll refer back to that as if it's
gospel and in my opinion much of it is ONLY to cover their butts!!
I hope you will somehow find a really good knowledgeable Dr. about RSD
who will help be your advocate.
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Old 08-18-2014, 05:14 PM #8
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Thanks guys. I got a call from the specialist's office this morning and got that appointment set up...so I guess they did follow up after I left on Friday. That's the one bit of good news today.

Bad news is that I failed the glucose screening test and now have to go for the 3 hour glucose tolerance test to test for gestational diabetes. The biggest concern I have with that is that IF I have it then I am much more likely to need a C-section which I was hoping to avoid. But it will be what it will be. Unfortunately I can't actually SCHEDULE the 3 hour test...I have to wait for the doctor to call me back (and hope I actually answer the phone) and THEN we can get it scheduled because the front desk staff can't do that. I've been waiting for that call back since 9am...but that too will be what it will be.

And I'm anemic too...found that out from this test on Friday. So now I have to get iron supplements to take in addition to my prenatal vitamins. May explain why I have been so TIRED lately (I just thought that was normal with pregnancy).

Good times all around...it's all going to be fine...I just have a new more things to be careful about is all...and they're all normal pregnancy things that have nothing to do with the RSD. I'm primarily concerned about the gestational diabetes (which I may not even have) because I was hoping for a natural birth because there haven't been any reports of spread from that but there have been from C-sections. Oh well...I will deal with all that when it comes. That's why I'm seeing the specialist, right?
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