StaceyYount

Hi, For the longest time we resisted getting a wheel chair. To my husband and I it was a realization that I was sick and still to sick to get out. He use to carry me into doctors visits. But one day he went to the flea market and bought a chair. It helped his back and I was able to be less tired when we did attempt to do things. But in saying that if you are having a bad day going out may make that day even worse. But sometimes you just have too I know. I think that they get scared that we are giving in to our illness and it is not that we are just coping as best we can. I still walk to the bathroom and back and for me some days that is really hard. The wheelchair helped me and I think if you explain that to your parents they might be more willing. Hoping you are having a good day! Stacey :-)

I posted this a little early. So I thought I would bump it up! Just a nice thing I found that made me think of us and hopes that I have for all of us! HAPPY NEW YEAR! Stacey :-)

Hi, I came across this and as I read it I thought of our small company and wanted to share it with you all! We thank thee For this place in which we dwell; For the peace accorded us this day, For the hope with which we expect tomorrow; For the love, the work, the food And the bright skies that make our lives delightful, For our friends in all parts of the earth, and our friendly helpers... Let peace abound in our small company. -- Robert Louis Stevenson, A Prayer of Thanksgiving I hope we all have this in the coming year and many good days! Thanks for being out there! Stacey :-)

HI guys! Sorry I haven't posted it has been insane but things are sort of clearing. My father-in-law is out of the hospital and doing better Thank God. My parents are still a mess and my sister is now considering taking a job away from them and then eventually moving them closer to both of us. They all live about 2 hours away and when she moves it will be an hour. The thing is is that she has to go immediately and that means my parents will be left behind until we can get them moved. Now with a new job she is going to be to busy to help much at first which leaves it to me and my husband. I can't ask her not to take this job but besides the logistics I think it is a bad move. So today twice we were on the phone "discussing/fighting? about it. I finally said look it will be really hard for Mom and Dad to live near us we have enough now. I was proud of myself for that but of course that did not go over well. I know my mom is going to panic and more hours on the phone. Jim of course says well we will just deal with it as it comes but he was getting annoyed again because it was taking it out of me. On top of it all my parents can't come up here for Christmas, I am still in my hole and so Jim said that we really can't have company or go down there for Christmas maybe the next week. Which I agree with I need some recovery time. And my Gran says well I really hope you can go down there it would mean so much to your father. Well DUH?? But if it is go to make me sicker I can't do that. Thank you for all your support. Sorry for the venting post again. I am working on the nos but so far not so hot. But like you said Jim and I are the important ones and I have to take care of us first. Hey Nina just a side note one psychiatrist said to me "so your not the average bear" . LOL Today I was feeling guilty about the conversations with my sister and the fact that I really don?t want and don?t think I can handle them living down the street and I came here and read your responses and realized it is ok. I am right not to want that-- it is not bad, Right??? Thanks you guys! Stacey :-)

Hey all, Thanks. It just keeps getting worse now my father in law is the hospital with gastroenteritis and pnuemonia(sp?). ACK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I thank you for your words and will respond more later. Stacey

HI everyone, I am still sitting here in my hole but a little higher and need some advice. As I have told you my dad has been ill and though he is doing better he is not better yet. Both my parents are having a hard time dealing with his illness and the resulting being at home and change in their lives. My sister who has been great is also having problems of her own. The thing is that they try and not call me but yesterday things got bad and I spent a lot of the time on the phone trying to calm people down and think of plans and it was just bad. And I feel so awful. My sister keeps saying that my parents should move up closer to me but what can I do? If my day falls I can't go over there. I can't get out of the house. My husband is wonderful and does all he can but to add that burden???? What do you do when you are the one that everyone calls when things go wrong and you are having a hard time yourself. It is hard to because what little extra energy I do have some days I would like to have for Jim and I know it upsets him sometimes that they drain me so. But I can't not be there for them either. And to be honest it frustrates me because I think hey 9 years of dealing with this! And I don?t call them for crisis's. It just seems that I have no one to call on, they are all calling on me. Except you guys which I know! My friends do this too and I am so tired and having a very bad back slide right now. My mother now has shingles, she has to take care of my dad, their doctors are ridiculous (another loooooong story),my sister is trying to sell her house take care of her 3 year old and her ?husband?. Any advice? I guess I just needed to vent a bit but do you understand and can you help me deal with this all without making myself worse and still helping. Reading through this is it is a bit of a jumble but hope you get what I am trying to say. Sorry for the cry of help again the hole I am in is deep but you guys and Jim are my light. Stacey :-)

HI! I just want to say that I so understand your frustration! I know that when I attempt to go and do something like a trip to the mall all though I am happy that I did it it is so hard to realize how hard it is. And it always comes as a bit of a shock. You feel like you have the energy that day to go out and do a little more but then you start to fell worse and worse and it is so frustrating because you think why can't I do this even? And then everyone is so excited that you did this and it is but how awful you feel is so frustrating and dis-heartenening (not sure how to spell that or if it is even a word so I hope you know waht I mean). But you will try again and overall it was a triumph but I know exactly how you feel. And then to have some one be rude on top of it is just the worst. But she did apologize and hopefully you got some fancy new clothes. The passing of the years so hard I know but you have gotten this far and that is a thing to be happy about it . At least I try and tell myself that. Of course a few days after the anniversary has passed. I guess I just wanted you to know that I understand I have felt the same way and that you have people who support you! Stacey

Hi! Well I can post again yeah! Still very deep in my hole but tearose if you bring the tea it might help! :-) Still headachy so will keep this short but wanted to say I am here and hopefully will be posting soon. Thanks! Stacey *:-)

I want to thank you for bringing this up. It is something I think about and something people have said to me. I have always been to scared to face that. But you know on the days were I do feel stronger and I can do more it is not scary. I think it is the days when you are so deep in your POTS hole that you can't imagine being able to do anything else. I guess what I am trying to say is that you are not alone in these thoughts and I tell myself that when I feel well enough to go to the store alone it won't be scary then. You know you have the desire to get well and take care of yourself and when you can though it might be scary at first I think that without all the overwhelming pain and tiredness and weakness it will be ok. Stacey

I would agree that Mayo can diagnose you but the follow up care is bad. I was diagnosed there in 1997. Which was a relief to know what I had but then that was really all they did for me. The other thing that is nice is that all the doctors there seem to talk to one another and read each others reports which is a big help with this crazy thing we have. Angela, I too was a dancer, ballet and miss it terribly. My husband still dances and is in rehearsals for Nutcracker now. So I understnad how hard it is to go from dancing all day and then not being able to stand up. I hope that soon we will be dancing again!!!! Stacey :-)

Happy Thanksgiving to all! My wish is that today brings you all love, strength, joy and happy things to eat! ( even just a bite!) Thank you for all you have given me! Stacey :-)

Sorry someone may have asked you this before or you may have said but do you have MVP? Becuase that can make your heart feel like it is skipping beats and it can come form dehydration, Stress etc etc. Of course POTS can do this too but I think that MVP is invloved for me at least. Because it only happens every now and then and my husband has a very mild MVP and no POTS and sometimes his is thumping and thumping. His HR at sleep is down to 40 sometimes but he is a runner and has always had that. I hope I am not restating anything my brian is somewhere else tonight and not with me! Welcome and know we are all hear to help if we can! Stacey :-)

PAIGE, GET TO A DOCTOR! Go to a walk in clinic if need be but see someone. Try another Er if you have to but go! Or go back to the one you were at and maybe you will get a better staff. You are not crazy and you need to remember that. My docotor always says that sometimes we have to remeber that you can get other things not involved in the dysautonomia. We are here and understand, let us know how you are! Stacey :-)

Hey, A few years ago I had a really high corisol test. Went to see an endocrinologist and he of course (like so many others) could not account for it. Lately I have had a lot of swelling, arms legs, hands stomach face everywere. In fact this week I can't get my wedding rings off. My chinese doctor says I am retaining a lot of fluid but not in a good way. I wonder if I have a cortisol problem too. Isn't it amazing that something you don't think is POTS realted usually turns out to be becuase there are so may things involved. HMMMMMMMMM Stacey :-)

I am so sorry that happened to you. I can't tell you how many times people have pushed ahead of me in my wheelchair with my 84 year old Gran pushing me. Maybe a good response would have been Oh did you want this for yourself because I can;t think of any other reason why you would say something like that and I certainly don't see that you are handicapped. My other thought was maybe the reason she said something is becuse she knows someone who is handicapped and gets mad at people who take those spots. you could say to her well how would you feel if I had said something like that when you were with someone you knew who was using the handicapped space. Not very strong but lets you say something without getting overheated yourself and making your heart race even more. People amaze me. Jim always says to say well would you like to see me faint! That would scare em! Stacey :-)

Have you had your potassium checked lately?? That can cause some cramping. I know that if you get a bad enough of a leg cramp it can make the muscle sore for several days. I would also ask your doctor because it could be a blood clot in your leg. Rare but a possiblilty. I had a really sore calf and my doc sent me for a test just to make sure it was not that. It wasn't but again better to be safe than sorry. Stacey :-)

Thanks I get confused on the hypovolemia but I believe that is the blood pooling? To be honest I have never been investigated for that but I think it has just been assumed. Even back in 1996 when I had my first TTT they noticed the purple hands and feet. I did try the salt loading adn increase in fluids which I don't think helped though I do try and keep drinking. Actually one of my problems now is retaining to much fluid and it has not helped the tachy. Though the edema may be from diet and other things. Still working on that one. I am sorry that Nicole's new doctor said that it is always hard when a doctor that you hope is going to help can't. one of the hardest things to deal with. Thanks for writing and if Nicole wants to vent to me since she knows I will understand I would be glad to listen. My dad is still in the hospital but doing better. Stacey THANK YOU ALL!!!!!!!

One thing that works for me if I have to be somewhere is to sit with my feet up on the chair in front of me. It helps to keep your feet up so the blood does not go there instead of your head. And sit as much as possible especially when there is extra stuff to deal with! Hope you can see your doctor soon! Congratulations on your wedding! We are a really great group here and all of us understnad which like you said helps more than anything so ask and we will try to help! Stacey :-)

Hey, My husband use to give me shiatsu massages and wehn he use to get to my ears it would hurt so badly. Then when I started seeing my Chinese Doctor she said that the ear has all kinds of points realted to things in your body. She even puts tiny needles that are on tape that stay on my ears when she thinks I need an extra boost. I am not thinking well today so I can't explain it very well but it may be that you are hitting certain points. I know the top of my ear inside is very painful!! I also have the strange nail things you have but never knew what caused that. I hope I helped when I am clearer I will explain better if you want. Stacey :-)

Hey, Have you guys read or seen anything by Dr. Garth Nicholson. He did a lot of investigation into Gulf War Illness and has published a lot about it. His web site is http://www.immed.org/ I can't think today or I would tell you more. But look into that. Stacey

Hey, I am sorry you are so deep but just wanted you to know that I understand and send you a little light and a hug! Hot tea works wonders for me and my favorite is PG Tips from England.. It gives me warmth and as the English would say braces me for the day. I just wanted to let you know that you are not alone. Keep those thorns nipped if you can! :-) Stacey :-)

Hey, On top of all this my father went into the hospital today. He has diabetes and Parkinson's and he got really confused yesterday and did not know for part of the day were he lived or who my mother was. They think his meds got screwed up but they are keeping him a few days. So an extra prayer for him would be appreciated. I has just typed all of my experiences and was copying and pasting and lost it all. So a much abbreviated version. I have Tried Every anti-depressant known to man...... Was on them for 2 years went off them and my energy increased 50%. Somatstain-for small bowel dysmotility. Horrible and painful shot no help Atenenol, and a bunch of other heart meds. Make me dizzier Stockings-For 1 in Florida??????? 2 no real help. Physical therapy- just can't tolerate it. Headache immediately. Do do some work with elastic band. And do walk to bathroom and back. Some dance releves holding on to walker. But that is about it. Chi Gong sitting form 2 different Pain management docs. One helped for awhile but then tried to do a nerve block and missed. GI docs with them I ended up down to 84 lbs. Only on TPN did I start to gain weight and then slowly eat a more. Long term anitbiotics- specifically Doxycycline for Mycoplasma infections. Was tested positive for M. fermetans and M.pnuemonea. Year of low dose of doxycycline and it seemed to help the sore throats. This is from Dr. Garth Nicholson his web page is http://www.immed.org/ 2 different Traditional Chinese Physicians. Still seeing one now and she believes she will be able to help. Has helped appetite and is really trying to get a the root of the problem. Acupuncture and herbs that they mix together in specific formulas based on hundreds of years. I really like Chinese Medicine theory because it takes the whole body into consideration Dr. Grubb contacted had me on Concerta for a year. Thought it might be helping then stopped. Midodrine-headache Florinef-HEADACHE!!!!!!!!!!! Phenobarbital know I had that but not sure because at that point was the 84lb point so who knows what. Ambien-gave me hallucinations Nuerontin and one other one like that. Allergic to one one no help. Only thing that really sometimes gives me relief from my headaches is a injection of Demerol and phenergan. Though just last week I learned that if I get the shot early on in the headache it helps it not get so bad.Why I did not try that sooner I have no idea. Usually I leave it as a last resort. My Gp is usually great about letting me get a injection but sometimes he gets a bug in his butt and won?t let me. I really try and limit it to when I am desperate. Right now I am on no meds to treat this. Just going with the acupuncture and just started another round of the doxycycline because hey it was something that helped before. Phenergan for when nausea is to bad. I know I am forgetting things but this is what I remember now. I think I?ll use this as a start to write my story for the web site. HUH????? Tomorrow is the dentist again so I will be out of it for awhile. Day to day is best. Today my sadness is for my dad and for the time I have lost with him. I bet you are sorry you asked now aren?t you Kath.... :-) Thanks again! Stacey :-)

Hey all, Well I thought I was doing better but you know what not really. You all have been great. But the sad thing is you guys are the only ones that I was able to talk to this about. Everyones life is so busy and they don't remeber things and lately all they have been calling for is for me to cheer them up and complain about their lives. I still feel so lost and like I am fighting this battle alone. Because for all JIm does and he is great {most of the time:-)} he is not in pain everyday and though he knows my days are struggles he can't comprhend it. I don't fault him for that but it is still hard. I keep rereading all your posts and it helps! You know its the dumb things, like I don't own a car. What I would do with a car I don't know. When I realize that one of Jims collegues is younger than me and he is teaching and has a profession. And probably the worst one was that a girl I use to dance with when she was 16 is getting married next year. Geez! Time has gone on and I am still here. This to shall pass as my Gran likes to say! My figthins spirit is down there somewere but right now all I want to so is give up. But as Linus in Peanuts once said"Were does one go to give up?" Stacey:-)

All I can say is you guys are the greatest! I knew you would understand and a lot of the time that is what I need more than anything! You have given me back some spirit and I will be forever grateful and all I can say is Thank you Stacey

Thank you all!!! Herdswoman scary but yes he is about 6 feet and is balding. Hmmm... Just a sign of the good traits huh? I smiled when I read your post. You all are so great and to know you understand means more. All day people have been telling me to cheer up to think of happy things and then telling me how bad they feel. Ususally I am ok with that but today it just made the scream louder! I thank you and the oodles and oodles of hugs have helped! Stacey