wareagle

Hey guys..I was just watching the national news and it looks like the flooding in the North East United States has gotten outa' control. I know a lot of you live in the areas that are dealing with the floods and wanted to check in and see how everyone's doing? I think they are evacuating some areas? Please let us know how you are doing when you can!! Sending good thoughts your way.

Hmmmm...this is a tough one! I actually just quit smoking myself...July 8th will be my two month mark. I pretty much did the cold turkey thing...BUT prior to quitting I'd been consistently decreasing the amount of ciggs. I smoked a day so that before I quit I'd gotten down to just 5 a day. This actually helped a lot I think b/c I was inadvertantly weening myself off the nicotine so that by the time I was ready to quit I was hardly smoking anyway. Have you searched for a smoking cessation support group in your area? I know that here in the States most hospitals have free or inexpensive programs to help folks quit. There are also alot of resources online to give both support and suggestions for people who are quitting. I wish I had some more suggestions for you but unfortunately quitting isn't going to be easy!!

Let's see...I know I can guarantee at leaste 3 shirts..all adult L ...I'm sure my friends and family will order more...depends on the style and price.

Hey guys..GREAT post!! I just wanted to clarify...the tutor.com website Alexia mentioned IS a work from home job!! You don't have to go to the children to tutor..you do it from your laptop...and according to the site you can choose your own hours..it doesn't have to be thirty. Sounds very interesting! I think these are all good sites...I've been wondering myself what I could do at home to make some money with flexible hours...so Thanks for the post!!

Oh..I'm so a hermitt!! And you know what..it really doesn't bother me!! (...well, most of the time) I still "interact" with people...usually by phone or e-mail...but going out somewhere just to say that I did really doesn't appeal to me. Honestly..if I were to go to the store or attempt to have a meal in a restaurtant it would be for someone elses sake..not mine! Now...there are times when I HATE the fact that I really CAN'T do some things...it's really more the fact that I don't have much of a choice in the matter...most of the time I would prefer to stay home anyway (even if I was 100%). I guess I've kinda' been that way my whole life... I enjoy spending time by myself..reading ect. It's not that I'm not social..it's just I've always been comfortable just being...well me. Maybe it's b/c I was raised as an only child?

Melissa, I don't really have anything to add...everyone has been so eloquent with their posts. Just please know that I am thinking of you and we are always here.

Hey Morgan...man that really blows!! I sent you a PM with some suggestions....I'm going to do some more thinking on it too. Do you know any registered dieticians that you could consult with? Maybe check out GNC's website and see what kind of protein powders and weight gaining products they have. Here's hoping you start packing on the pounds soon!!!

Hey Morgan! Let's see...my first tilt was at Mayo in Jacksonville and it was part of an "autonomic reflex screen"..it involved autonomic testing but ONLY a 5 minute tilt. The results indicated a possible problem BUT the tilt was not long enough to really see what was going on. SO..then I went back for an "extended" tilt..this time they did it for only 10 minutes...unfortunately the "specialist" that read the results still was not convinced that I had an ANS problem. Fast forward a few months and I found my doc. in FL...he disagreed with Mayo and ordered yet ANOTHER tilt but this one for the full 45 min. I was actually only able to stay up for around 20 min. but it unequivically demonstrated that I have POTS. If they had done the full tilt (30-45 min) the FIRST time I wouldn't have had to do it over and over again! So moral of my story...make sure the person reading the test is reading it correctly AND have a proper tilt done the first time!

I've had 3 TTT and NEVER have the people administering it kept my upright until my bp and heart rate disappeared!!! I have always been in control of when I come down from the tilt! PLEASE do not misrepresent what happens during a tilt table test...at this time it is the "gold standard" in dx. dysautonomia..there are a lot of people who come to this site to get information on testing and treatment and when you say horrible (and inaccurate) things like that you may discourage them from getting the testing and ultimately the answers they despirately need.

I must say I'm a bit confused on how this "new" testing is better than a regular TTT? I did some research on the ANSAR test and it seems that although it may have some benefits in dx. other disorders there is no specific criteria for dx. POTS and other forms of dysautonomia. For instance...Dr. Grubb states that to be dx. with POTS a person's Heart rate will increase by 30 bpm. and/or go to 120 bpm. within 10 minutes of being upright....Well this ANSAR test only has you standing for 5 minutes and some people won't demonstrate OI within that amount of time. Also..the people that are being sent to administer these test aren't trained to recognize POTS specifically and are unaware of the possible problems during this test. You know there are people who will pass out in less than 5 minutes upon standing or have some type of crisis... what happens then? At leaste with a TTT you are strapped to the table and the people administering the test know what to expect and how to take care of the patient. And I may be wrong..but I was under the impression that during a TTT both your sympathetic and parasympathetic NS WERE seperated out using different techniques. Please don't get me wrong...I am all for new technology and better dx. tests...and I can understand your enthusiasm..but I would caution you to really investigate this before recommending it to people here. As far as I can tell...most everyone here has been dx. with POTS via. a TTT already...and I don't believe that being "retested" by this ANSAR is going to change anything in our treatment.

Happy Birthday!!!

Nina..I'm so glad that Pat is now recovering at home...continued good thoughts and prayers for you and your family!

Hey Mel..I'll be praying and sending good thoughts your dad's way!! I hope the surgery goes well and that he has a quick recovery.

Jan...you and Jeff continue to be in my thoughts and prayers. Love to you both.

Thanks guys!! I had a really great birthday...several of my friends came down and we got a condo on the beach. One of my best friends flew in from Dallas and surprised me (we haven't seen each other in 2 yrs). Overall my body held up pretty well...lots of discomfort and soreness still from the surgery...but I pushed through it and had a blast!! Now I'm planning on staying still for a couple of weeks and finally letting myself heal! There was lots of good food and laughter the whole weekend...it's amazing how much friends and red velvet cake can lift ones spirits! I hope you are all doing well...thanks again for thinking of me!!

Thinking of you and your family Nina...I hope all goes well on Friday.

Hey guys..sorry I should have specified..I had the Laproscopic procedure...I guess that's why I expected to be completely healed faster than I am.

Hi my potsy friends! I'm still recovering from my ol' gallbladder surgery...I went to my GP today b/c I'm still having some swelling and lots of discomfort/irritation in that right upper quad. I was kinda' worried b/c it's been 2 weeks since my surgery and for some reason I thought I would be better by now. She said everything looks good but didn't know how long it usually takes for the discomfort to fully go away. I know that everyone is different when it comes to "healing" but was wondering for those of you who have had this procedure..how long did it take you to feel "normal" again? My abdomen is fine and I don't really have pain...it just feels so irritated and uncomfortable..it gets worse throughout the day as I'm up more. I've tried looking online and get mixed info..some say it's 1-2 weeks others say it can be longer. I HAVE spoken with my surgeon's nurse and she was mainly concerened about the swelling hence my apt. with my GP today. I've never had any type of surgery before..and with the POTS on top of everything else I'm not sure what to expect as far as my recovery period goes. Any experiences would be greatly appriciated!! Love to you all!

Laura, Don't worry about this exam..I had to go through it too. It's VERY common that the SS office will send you to a psych. this has NO bearing on wheather or not you will be approved. When I did it the psych. told me I did not show any signs of psych. disorder and that she believed my illness to be purely physical...and I DID get approved for my benifits. Try not to worry about it...like Carmen said just be honest and yourself. I was really surprised that the eval. I had simily was some standardized tests...mostly cognitive things...there wasn't any deep or meaningful analysis so don't be scared!! Good luck!

I had the laproscopic surgery so just the four tiny incisions...I've heard it's MUCH better than the "old" operaton! Emily...I just saw my surgery send off post! AWWWWW...you guys make me feel so special!!

Hey guys!! I wanted to check in and let you all know that I'm officially without my gallbladder! The surgery went well...I stayed in the hospital over night just as a precaution. I've been decreasing my pain meds and today I'm starting to feel a bit more "normal". Last night I actually had a happy meal from McDonalds...It was AWESOME!! I've missed food soooo much! I'm just so glad the operation is OVER...now I'm just focusing on recovering....I have my post op apt. with my doc. on Tues...not looking forward to the staples coming out but they say it doesn't hurt much . I wanted to thank all of you for your support during this ordeal...ya'll are the BEST!!

Okay...surgery has been moved up to MONDAY the 8th...I'm sooo glad b/c I've been getting greener and greener with each passing day! Uuugggg..this is NOT fun! Love to you all!

Surgery is scheduled for NEXT Thurs. (not tomorrow). The doc. said I should be fine untill then...I just hope my poor gallbladder will behave. I'm definately more sore today than I have been..I'm just going to try and relax and get some rest..maybe that will help. Love to you all!!

Hey guys..just an update. I have an apt. with a surgeon this afternoon. He was recommended by my POTS doc.'s office..apparently he IS familiar with dyautonomia..so wish me luck!!

Hey guys. Well, I got the results of my HIDA scan...I have an ejection fraction of 4%!! So, needless to say my next stop is a surgeon. I just hope my poor gallbladder hangs in there for me until they can get it out . I got the results after 5 o'clock today so I haven't gotten an appointment yet. I'm hoping my POTS doc. can recommend someone with knowledge about dysautonomia. I'd like to have it done in Pensacola (if anyone has any suggestions)...if not my GP has a surgeon I can see in AL. At this point I'm trying not to think about the surgery...I just want to get in and get it done so I don't have to sit here worrying about my gallbladder exploding!! I didn't really talk to my GP about the results..the nurse called and told me..so I'm not exactly sure what that 4% means but I know it's NOT good..so now I'm scared something is going to happen before I can have it taken out. Any tips/advice is much appriciated...all of your posts have been very helpful! Thanks guys...love to you all.