Sue

Dear Tearose Wrapping you in warm thoughts and wishes. Pamper yourself while you wait for results. Sue

Hi everyone, been very much in a life transition here. We have had to sell our home and are now living with my mom and dad. Actually they too have sold their home so we could buy a new home together. My father is paralyzed from a stroke and my mom is having a hip replacement in the upcoming week. and me well lol I am my usual "never know whats gonna happen everyday mode" Major stress but this new household seems to be working out for everyone. I am so much more comfortable when I have someone around "just incase" and my father seems to be alot more happier himself being around my family, husband and kids. I still deal with the same ole sh** everyday, like the rest of us here. But I guess I have finally come to accept it and do whatever it takes to get through the day. I pray one day someone will figure this out and have an answer for us. Hmmmm will that day every come. I think about everyone here all the time, and include you in my prayers everyday!! Take care everyone. Just wanted to let you know I am still hanging in there Sue

Dear Danelle I am so sorry for your sons diagnosis. I am sure you are heartbroken by this, I too fear my daughter has NCS or POTS she is always tired, never sleeps, very pale, etc. But naturally does not want to be tested. I already have her on gatorade and high salt, seems to help her. Keeping both of you in my prayers Sue

Beautifully done thanks Sue

Lexapro is Celexas sidekick but oh soo different I gained 40 plus pounds on it and ended up in the hospital for over a week. You have to be so careful when you are sensitive to meds. Sue

Hi everyone!! I just wanted to let those of you who are on celexa know that is now has a generic!! I wasn't happy because i am so med. sensitive. After four days I totally felt a change. I did call my insurance company, they approved the brand name for me but I wanted to warn you. My insurance guy told me usually people who a medication sensitive can be approved. We are also moving!! Very stressful right now, but are doing ok. One day at a time. My dad is paralyzed from a stroke and my mom is having a hard time. My husband suggested selling our homes to buy a larger home for all of us. So that is what we are doing. We have found our new home, sold our house now we'll be moving and then selling my parents. We didn't want people going through their house whle they are still in it, especially for someone to realize my father is paralyzed, not a good thing. Wish us luck I also made it back to Bible class last night!! Boy that felt good, I don't venture out too much anymore. But my girlfriend has been doing this in her home for a couple of weeks now and has been bugging me. (I so hate to be with a lot of people, I am always worried about getting sick and having to explain myself) But she had told them a little about my situation and they were great. Its wonderful to have support from your friends. and new ones too Well sorry so much rambling!!! Sue

Just a thought!!! I have my alarms on my cellphone set to when I need to take my pills. Morning afternoon and night. Check your cellphones for alert alarms, works great Sue

the steaming system works awesome in microwave too put water in a microwavable bowl and a lemon slice nuke to boiling wipe out your microwave!! easy enuf.. Sue

Hi Julia I will also be sending you good thoughts and prayers today. Hopefully you will get some answers soon. Sue

Hi everyone!! I just came on looking for any new info on Dr. Grubb as well. Sue

Great Questions!! Hmmm, Sue my neices call me Dewey No favorite book, but love my womans weekly from the grocery store!! Mask/major lesson in life here, I have never looked at another human the same since seeing this movie. Looks are only skin deep!! My happy place is with my family!! I wish I had a juicy secret to tell you all but I don't

It's been a while since I have posted just thought I would say hi to everyone. I'm always lurking but don't have much to say lately. This whole thing just has me majorly bummed out. Plus have gotten myself in a comfort zone that I need to snap out of. I have gotten too comfortable staying home, in my pj.s in front of the tv with my pillow, blanket and dogs. I'm extremely tired along with the other same ole' symptoms. I hope everyone is moving along. Hugs to you all!! Sue

Hi!! I can't stand being warm or anywhere near it I hardly ever wear a coat, usually have shorts and a tshirt on in the house. Only have a comforter on my side of the bed, husband has a million blankets as well as kids because I can only tolerate the house being at 68* at the highest. Definately know where your daughters coming from. I only wish that was my biggest issue with my NCS, but unfortunately its not. But this one I can handle Sue

Hi Mary!! Hope you are feeling better!! We all know how you are feeling, all too well. I am wondering if you belong to a church. Only because with so many members your pastor/priest may be able to hook you up with someone professional to talk with as well as someone to come and watch your daughter so you could get a break.. Its worth a try. Last year I was in such a rut I would even entertain the telemarketers when they called!! thats bad Anyway I wish you best!! sue

I am so glad to hear his surgery went well. He had been on my mind all today. He will definately in my prayers daily. Thanks so much for keeping us updated/better than all of us calling. and I think it would be great if everyone sent him cards or letters. Nothing lifts the spirit knowing people care and are sending you good thoughts and prayers. God Bless Sue

Happy 2005 Everyone!! I too am looking forward to a NEW Year. We ended this year with my brother getting married this afternoon and we are anxiously waiting the arrival of a new baby due any minute so we're ending it good and starting off the same way!! I want to wish all of you health and happiness in the upcoming year!! and thanks always for the support you have always given to me and my family Thanks so much Sue

Please keep us informed!! Dr. Grubb has been my lifesaver since being diagnosed with NCS. Will keep him and his family in our prayers. Sue

I can't believe how paranoid this situation has made me. I was so sick at the beginning of this year I thought I would never have to go there again. Its been awhile since I have had a "major attack" I have mini's all the time, those I can handle the big ones I can't anymore. I have really just started to try and live my life as normal as I can. My daughter and I went to Pennys to pick up a warm up suit for her, we were in the store for apx. 10-15 minutes we were standing in line and here it comes. Instantly overwhelmed with heat, sweating bullets, head starts pounding, heart wasn't too bad, but balance completely gone. I feel like I am trying to get on a boat in major waves. Color completely gone, instantly I started crying. I just don't want to go back there again.... My daughter got me home and I felt bad for hours. I probley slept 20 hours. Today well I'm still tired but completely paranoid and freaked out!!!! Like I said I can handle the little dizzies here and there, those I am use to, still don't like but manageable. Do you guys panic like this or am I just being paranoid about crashing again. Its 2:00 and I'm still in my pj's sucking down gatorade and chips!! my husband told me to just relax a couple of days. but I don't want to make myself relapse!!!! Any suggestions?? HELP!!! thanks Sue

Wishing all my friends here happy holidays, and peace, love, and health for the new year!! Sue

I got my bracelets too!! My kids are both wearing them to school and have gotten lots of questions about them. I think this was a super way to spread knowledge of dysautonomia around. Way to go Mighty Mouse!! Sue

One of my best friends has cancer and has gone through many many stages over the past year. She knew something was wrong with her but the doctors had a hard time diagnosing her. When she got the diagnosis she was relieved in a sense to know that it wasn't in her head, like suggested by several doctors. Sound familiar?? As her cancer has progressed and several treatments tried out. She has felt relief with some drugs and others have made her feel worse. Sound familiar?? When she lost her hair she said she felt like she lost her identity. Again sound familiar?? This past year has been a rough one for both my self and my friend. But together we decided we are still the wonderful person that god made us, we are strong, we are beautiful. There are so many mountains for us to climb we just need each other to do it. Don't ever let this "illness" get the better of you (and yes I too have a hard time with that sometimes) Hold your head up, be strong..

Morning!! Last night I read alot of posts that mentioned staying hydrated for surgery, I will definately keep that one in mind. This is such a painful injury I still can't believe I did it. My knee swells with so much fluid it reaches the size of a grapefruit. Getting it drained does hurt like **** but the relief afterwards is so worth it. The problem is he thinks I have damaged that area so bad that it is going to keep swelling and being full of fluid which puts pressure on my knee cap. We are going to wait another month at least and see what happens. Surgery does scare the crap out of me I was so bad the beginning of this year I know I don't want to go back to that place ever again!! I am so careful now with everything, food, being hydrated, stress you name it. Til then I am icing it a few times a day and trying to stay off of it. Thanks for all your advice like always. I get more info here then from my own doctors, at least they listen when I tell them things. Love you guys Sue

Just wanted to say hi to everyone and hope everyone is doing the best they can. A few weeks ago I fell while being off balance and whacked my knee on the cement steps up the porch.. OUCH!! anyway I have been seeing an ortho every other week to have this drained, he said it is called bursitus. he is thinking if we keep getting this fluid build up I may have to have surgery, he would remove the pouch on top of my knee cap and that it would grow back.. Has anyone had surgery while having NCS or POTS?? and any suggestions? Also want to welcome all you new people (seen lots of them) This site has been a life saver!! Not only to myself but to my family. I don't always post but I read alot all this information can only do us good in trying to figure out our own individual circumstances. Take care Sue "SOLES DOWN, SOULS UP!!"

What a step in the right direction!! I am truly happy for you. Sue

Animals are my passion!! I love my pets!! Two dogs, a kitty and a bunny!!! My daughter just had a bout with the flu, first time my cocker has left my side in 6 months!! He was beside himself though, he kept running back and forth, like a little nurse. They are so smart, and talk about unconditional love!!! He even loves me on those god awful can't get in the shower, put on make-up, or fix your hair days!!! My kind of guy!! Love your pets back!! Sue