VJWeaver

I want to Thank everyone for the well wishes. I usually get over surgeries real easy but this one has kicked me right in the behind. I still think someone come in my house and beat me almost to death. I don't think there is a part of my body that doesn't hurt. This reminds me to not complain about the small stuff and the small pain...LOL... Thank you all again and hope all is doing okay. Love and Hugs, Vickie

You mean I can only have one day at the spa....!!!!!!!!!!!!!!! That is not fair. It has always been really hard for me to take a shower and get ready and do it fast...Just doesn't work. Well now I am slower tahn that...Didn't think it was possible....LOL....Well atleast I know it will get better.... Thank You to all that has responded to my post. It has really helped keeping my humor going.... Michelle you know what I would be like without that....LOL.... Love to you all and hope all is doing as good as expected. Vickie

Thank You everyone. I told the doctors that I just wanted attention not scars....LOL.... But you know how they are they NEVER listen to us... Thanks again to all, Love and hugs, Vickie

Well I wanted to let the people that know me that I just had Quad By-pass.. I went into the ER because my BP went out of control (which mine does) and chest discomfort. They did EKG and saw inverted TWaves.... Then later that day they did a Heart cath on me and then Open Heart. I asked if they could slow down but it was already done..LOL....So now I have to check and do research on NCS, POTS, EDS and Heart Bypass. If anyone has any information that they might think I would want to read please send to me at VJWeaver32@earthlink.net. I am not really up to doing to much research right now but I do want to look into it and see if I may find something out that could help someone else from not going through this. I hope all is doing okay and feeling well as can be expected. Love and Hugs to all, Vickie in Ohio

Hi Everyone, I just wanted to update you on the DYNA Conference. I may not be able to attend as it looks like I am getting a Pacemaker put in so I wanted to make sure you all knew where the lecture was being held in case I am out of communications with you. If you are planning to attend you should have notified me by now. Plan to arrive at the Ward Pavilion at Wildwood Preserve: 5100 W. Central Avenue, Toledo, Ohio before 4:30 PM on July 13. Adults should sit towards the back and leave the front tables for the DYNA families and kids. All other events of the DYNA Summer Chill Conference are private and for the registered DYNA kids only. Children must be registered and on the attendance sheet with DYNA by now. Space is very limited and they will not be able to accommodate walk in's. Have fun and enjoy to the people that are attending. You wil find it real interesting. I did last year. Vickie

Frances, I myself think it would be worth it. I see him but I live in Ohio so it is a lot closer. My first appt. with him was 4 1/2 hous long and he does explain in detail of what we have. If you are already know alot about these disoders then it is if you want to. I have heard people on different support groups say that it was worth and some say it wasn't because they knew the stuff he was talking about (such as serotonin levels, he draws a picture of the head and points out where we malfunction at, etc. I always say that it is nice if you see him atleast once and get all the information that he has to give. Also if you do decide to keep your appt. email me at VJWeaver32@earthlink.net if you want to. There is a Hilton right there on the campus of MCO. When you call them up directly and tell them that you are going to see Grubb they will give you a good disount on the room. This was it would save you on a rental car. It is a walk to his office but the do have an underground tunnel that will take you there without going outside. I did want to let you know if you don't know for sure if you want to keep it you should wait until it gets a little bit closer to the date. Once you cancel foget it trying to get it back...LOL.... Hopes this helps you. Good Luck to you, Vickie

I am moving this up so if anyone hasn't been online for awhile they will see it. Vickie

I am moving this up so if anyone hasn't been online for awhile they will see it. Vickie

I have mine on my profile but mine is vettprsn56. Vickie

Nina, That is such GREAT news. My thoughts are with them and hope Kelly comes home soon so everyone can spoil her even more... Vickie

I am moving this up so if anyone hasn't been online for awhile they will see it. Vickie

Here is the one that has all the information on it. Hope all is doing well. Vickie

I have heard form some of you that are planning on attending. This will be a great chance for us to get together. Keep me posted. Vickie

Hello there. I do have all the information for it on the post on the 13th titled Conference on Dys. in Ohio. It is really for the children with our disorders but they are having a lecture with Dr. Grubb and two other Physicians speaking at the conference. There are some adults that are coming to hear the doctors speak. It is going to be held in Maumee Ohio which is close to Toledo Ohio. Email me if you have any question on it. vjweaver32@earthlink.net Take care, Vickie

I am so sorry you had to go through that. I have had those symptom a lot. I don't go to the hospital any more unless my B/P goes over 210/120 with the symptoms. I do have some numbness in my neck and arm but not like you did. Or should I say I haven't yet....LOL... I understand how you felt. I went to the ER all the time and they finally looked at me like we can't do anything for you. They see everything is out of control but like you, all test come back okay. It is VERY SCARY to experience this because you feel like you could die anytime and then you feel like a fool when your system goes back to mormal. I agree with Nina. You do need to go when you don't know for sure. I have had so many episodes that I know when it feels like before or when it is a little different. When it is different I go to the ER. Hope you don't have anymore like that and all is okay with you. Vickie

Lisa, I have that same problem and I don't get Tachy. I can go up stairs and my breathing will be fine. Then another time I will go up the same stairs and feel like I ran a marathon because I can't catch my breath. I am like you I can be sitting down and breathing fine and all of a sudden it hits me. I found out that if I drink some cold fluids that it help me. I don't make it Ice cold just out of the fridge cold. When I was younger the diagnose me with Asthma (SP) but none of the treatment for nomal patient with it wouldn't help me. You just have to remember we are ALIENS....LoL..... Hope this helps you, Vickie

I wanted to remind everyone that is attending the conference that I do need your full name, and the hotel you will be staying at so we know how many adults that are going to be there and contact you if needed. Please look at the post that says conference on Dysautonomia in Ohio for date and time. Please email them to me at VJWeaver32@earthlink.net. Thank You, Vickie

It is a really good idea about listing your symptoms, B/P, HR, etc.. I have a daily planner and I list my B/P, Heart Rate, what symptoms I am having, and if I took extra meds to help me. If I am feeling good I put that in. This way I can keep track of it for me and the doctors. When I used to go to the Emergency room I would put in my Journal what I went for and diagnoses sheet in with the day I went in. This way I don't have to hunt it down later. I have kept a Journal (what I call it) for a long time and it has helped me a lot. I have such brain fog that I forget things. This way it is in the Journal for future reference. As far as the cause of my POTS I will never find out how I got it. The reason I say that is on your list to take to the doctor I have 8 out of the 19 on there. We could never figure out if the egg came before the chicken or the chicken before the egg. LOL....So I gave up and just treat my symptoms as I have them. Hope everyone is doing okay, Vickie

Thanks...Debbie Helped....LOL

I get dizzy in any position I am in. I have gotten very dizzy while laying down. I don't worry about it that much because I atleast know I can't myself if I pass out then. hehehe.... I do have NCS and POTS. It is very rare for me to do it laying but has happened.

I have many pairs of them and wear them all the time while out. I have ordered the thigh high and also the panty hose. I like the thigh highs better for me because I have a lot of problems with my stomach. When I would wear the panty hose ones they made my stomach problems worse but everyone is different even if you have stomach problems. Dr. Grubb told me to get the panty hose ones because the do better for us but said in my case the thigh highs are good to. They are really good specially if I am going to be on my feet for any length of time. Like all others have said they are HARD to put on but worth it when you get them on. I did want to tell you also that it is really hard to put a hole in them or a runner in them. I have some pairs that are very old and still look new. So they do last forever in my case. If you have any kind of health insurance you might want to check with them. Some insurance companies do pay for them and some don't. I am glad that Michelle put that link on here because I know people have got them for a good price. Good Luck with them, Vickie

I have always been sensitive to light inside and out. I wear sunglasses year around while outside. I also do have a problem with some stores I go into. I get a migrane really fast. Sometimes when this starts I put on sunglasses inside the store. It does make it hard to see things but it helps with not getting the headache. There is a lot of people staring at me but what the heck... Vickie

Goofy Slipper Lecture on Dysautonomia: (A DYNA kids event open to adults with dysautonomia) Tuesday: July 13 - 4:30 to 10:00 PM (please arrive early so they can start promptly) Location: WILDWOOD PRESERVE - Ward Pavilion 5100 W. CENTRAL AVENUE TOLEDO, OHIO *Adults are more than welcomed to attend this event and listen to DYNA's informative lecture on dysautonomia. They have 3 well known and highly respected dysautonomia specialists speaking this year. *DYNA would like to know how many adults to expect and they would like a small donation (whatever you can afford) to help cover their expenses. They are limited on space and therefore can only handle so many people - please notify Vickie Weaver at: vjweaver32@earthlink.net if you plan to attend as I am keeping a running list. I will need to know how many from your family at attending and what hotel you are staying at. *Adults are asked to sit in the back of the room and leave the front tables and seats for the DYNA kids. *Directions to Wildwood Preserve - Ward Pavilion from your particular hotel can be obtained on Mapquest. NOTE: Do not use the main park entrance from West Central Avenue - use the East Entrance which is between the main entrance and Cory Road! For information on this location: www.metroparkstoledo.com (click on rental facilities and scroll down to Wildwood Preserve.) *Adults who want to stay at the same hotel (so we can have some casual time together) should book their rooms at: Country Inn and Suites 541 West Dussel Drive Maumee, Ohio 419-893-8576 - You need to call this number to reserve a room. *This is not a structured conference for adults. This is a group of adults who just want to get together and attend the DYNA lecture. *The other DYNA events are only open to the kids. *As adults we have an opportunity to help the kids dealing with these conditions. The DYNA parents do like to speak to us and learn about what it feels like to have these conditions. Remember, we must demonstrate a positive attitude in front of the kids. We can also benefit from watching the kids deal with these conditions - we all benefit from each other. *Debbie at DYNA kids has asked me to handle all communications with any adults attending. Please email me directly for any information. My email is: vjweaver32@earthlink.net Thank you. Vickie Weaver (adult with POTS)

I am going to the conference to hear the doctors speak. I live in South West Ohio close to Dayton. If anyone wants to split a room please email me at VJWeaver32@earthlink.net. I did want to let all of you know that I did attend the conference last year to help Debbie. It is a really great conference and is kinda sad in a way to see these young people having to suffer with our disorders. These kids are troopers. They are really great and go though a lot like we do but the parents of them go through it to. Fighting with the school systems. Last year Dr.Grubb spoke and did a great presentation on our disorders. It would be worth it to get the Video from last year. Hope all is doing well. Vickie