** Due to the increasing severity of MY ILLNESS, it has become impossible for me to continue to post on a regular basis. Unfortunately, as much as I desperately long to, I am also unable to visit each of your blogs often or reciprocate all the loving, supportive comments many of you continue to leave - even though at times it may appear as though you've arrived at some long ago, forsaken blog! With that said, I really want you to know that I miss every single one of you and that I really am still here! I'm just too sick and too weak most days to be able to sit up long enough to create a brand new post...or even read one. However, I absolutely do receive AND read every new encouraging word you leave (and, often, the old ones, again and again!) and I cherish them now more than ever! I truly appreciate your love, support, and, most importantly, your precious time spent on your knees in prayer for my family and me. It ALL means the world to me and I am truly blessed to have friends like you!
~Hugs and Sister Love, Teresa

FYI: All comments come to my email, which I can easily read on my phone. I also enjoy Facebook on my phone because I can catch up on A LOT in a very short time there. Soooo, if you're on Facebook, come 'friend' me there! {{HUGS}} **

Monday, March 22, 2010

DYSAUTONOMIA:
MY FREQUENTLY ASKED QUESTIONS
PART 4

Please note: If you have not read PART 1, 2 and 3 in this series, please click on the following links to do so before reading this post.

PART 1 Questions 1-4

PART 2 Questions 5-8

PART 3 Questions 9-12

13) WHO ARE YOUR POTS DOCTORS AND/OR WHAT DOCTORS/SPECIALISTS DO YOU RECOMMEND?

My original cardiologist who suspected that I had POTS was Dr. Olubunkola M. Olubi (Dr. Olubi) at Cardiac Disease Specialists (Newnan, GA Office). Dr. Dan Dan (yes, his name is Dan Dan!) who also works for Cardiac Disease Specialists (Piedmont Hospital - Atlanta Office) is the physician who confirmed my diagnosis with the Tilt Table Test (TTT).

It wasn't long after the TTT that I was referred to the VANDERBILT AUTONOMIC DYSFUCTION CENTER at Vanderbilt University Medical Center in Nashville, Tennessee. There I was evaluated and treated by Dr. Satish Raj. I HIGHLY recommend Dr. Raj and his staff at Vanderbilt. I could not be more pleased with that facility! My husband and I have been treated with the utmost dignity and respect every time we have been there. Everyone we have come into contact with has been very, very kind and compassionate. They have listened to everything we have had to say and they have done their absolute best to answer all of our many, many questions. Since my initial evaluation, I have been back twice and have been in frequent contact with Dr. Raj via email. I was scheduled for another follow-up with Dr. Raj not too long ago, but I have not been well enough to travel. I hope to be able to go again soon.

The doctor who truly keeps everything going for me is my Primary Care Physician (PCP), Dr. Patrick Railey. He is an amazing family practice doc I used to work with, go to church with and do medical missions with before I became so sick. Like most physicians, he was not extremely knowledgeable about Dysautonomia before my diagnosis. However, he has really went out of his way to learn as much as he can about it so that he can help me as much as he can in his capacity as my PCP. He has been a huge advocate for me and a true blessing to my family and me during this crazy time in our life.

I do not have any personal knowledge about any other doctors; however, you will find a great PHYSICIANS' LIST at the Dysautonomia Information Network (DINET) website.

14) DO YOU HAVE ADDITIONAL RESOURCES YOU CAN PROVIDE?

Absolutely!! I have provided a few on the right side-bar of my blog but I have been working on a much more comprehensive list for you!

WEBSITES:

BUT YOU DON'T LOOK SICK
CRANBERRY TEA TIME
DYNA KIDS
DYSAUTONOMIA - Symptoms, Causes and Treatment
DINET - Dysautonomia Information Network
MEDHELP - Autonomic Dysfunction Community
NDRF - National Dysautonomia Research Foundation
PHYSICIAN LIST
SEPSIS INFO

SSDI INFO - BYDLS.COM
SSDI - DISABILITY KEY
STARBRIGHT WORLD - Social Network for Teens
STARS - Syncope Trust And Reflex Anoxic Seizures
12 MORE PAGES
TILT TABLE TEST (TTT)
VANDERBILT - Autonomic Dysfunction Center

BLOGS:

12 MORE PAGES
CHRONIC BABE
DARE: Dysautonomia Awareness Rarely Experienced
DISABILITY KEY - SSDI
Dysautonomia: My Journey, My Battle, My Victory, My Life

INSIDE MY HEAD
JONI AND FRIENDS
LIVING TIRED: My Journey with POTS
LIVING WITH BOB
MELANIE'S JOURNEY
ONE DAY AT A TIME

POTS and DYSAUTONOMIA AWARENESS
SURE HOPE
WHERE DID I GET THIS LEMON?

ARTICLES:

AHA - POTS
POTS

BOOKS:

'God Needs Me: Living with Dysautonomia' by Lynn Fox Adams - May be purchased at Tate Publishing or Amazon.

VIDEOS:

Mystery Diagnosis Episode About POTS (Orthostatic Intolerance) - Part I
Mystery Diagnosis Episode About POTS - Part II
Mystery Diagnosis Episode About POTS - Part III
YouTube - 5 Awesome Potsies!
YouTube - Chronically Kylie's Channel

FACEBOOK SUPPORT GROUPS:

DFO
DYNA Frogs
DYSAUTONOMIA AWARENESS
DYSAUTONOMIA BOOK, 'God Needs Me. Living with Dysautonomia.'
DYSAUTONOMIA FOUNDATION
Fans of BUT YOU DON'T LOOKS SICK
FIGHT AGAINST POTS
Got POTS? We do.
I HAVE DYSAUTONOMIA. IT DOES NOT HAVE ME!
Living with Postural Orthostatic Tachycardia Syndrome Group
POTS
POTS and Dysautonomia Awareness
STARS - Syncope Trust And Reflex anoxic Seizures
The Dysautonomia Connection
12 MORE PAGES
UII - Understanding Invisible Illness


This completes my FAQ series. I know for some it has probably been a bit boring. However, I can only hope and pray that there have been at least a few who have found it beneficial because they have been searching for answers related to their own battle with this illness or for those not yet diagnosed. I also hope it has helped answer some questions for some of those who know me but haven't quite understood what has been going on in my life.

Either way, thanks for taking the time to read these posts. As I said at the beginning of the series, in the next few days, I will create a separate page just for these questions. Then I will put a link to it at the top of this page for quick reference.

Thanks again for all the love and support you all continue to show to my family and me. It means more to us than you'll ever know!!

{{HUGS}}


Teresa


P.S. If anyone would like their name, blog or website added (or removed) to my resource list, please let me know.

9 comments:

septembermom said...

What a truly informative series of posts. I know that you'll help many with this information. Hope you're having a good day Teresa. Hugs!!

Ericka McCarty said...

I really am enjoying your FAQ's, as it helps me to see that alot of what I thought was "normal" for me really wasn't. I am also sorry that you have such a reason to have such a blog. In any case, you may link to my blog... myjourneywithpots.blogspot.com

May you have truly normal feeling days!

Rusty Hoe said...

Fantastic work Teresa I am really impressed. How you managed to get it all together amazes me, my brain fog has been so thick of late just making my coffee in the morning has been complex. I hope you gave yourself a big high five for your brilliant work.

If you wanted to add another new resource there is:

DARE:Dysautonomia Awareness Rarely Experienced.

http://dysautonomiacs.wordpress.com/

This is a new group blog I'm part of aimed at raising dysautonomia awareness. It's still in it's infancy but should be fully sorted soon.

Hugs
Michelle :)

septembermom said...

Teresa, thanks so much for your friendship and kind words! It really means so much to me:) Hugs, hugs, and even more hugs to you :)

lisarailey said...

Another fantastic example of your gift of communication, my friend! So glad you are using it to inform and encourage those that God is bringing into your life! I always knew He was going to use this gift of yours in a big way. Thinking about you and praying for you and your precious family!!! Love you!

Debby Carroll said...

Hi Teresa,
I've never heard of this ailment and I am so impressed with what seems to be your incredibly positive attitude. I hope you are able to find peace and joy daily and thanks for checking out my blog, too. I enjoyed your comment.

Marilyn (A Lot of Loves) said...

What an interesting and informative series. Since I'm not really familiar with dysautonomia I really learned a lot.

christy rose said...

I just caught up on all of the posts that I missed in this series that you are doing and I have learned so much. It is amazing to learn of what people who are ill go through and how they have got to have God to get through it sometimes. I do not know how anyone could get through and illness, such as dysautonomia, without God. It makes me so much more compassionate being informed. Thank you so much.

Alison said...

Want to say hi. My son has a very severe and degenerative disease of the autonomic nervous system. He doesn't suffer so much from POTS but his systems are greatly affected and getting worse as he gets older. He is 11. He is a light in our lives and we thank God daily for giving him to us.

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