StaceyYount

Hey all, Sorry but I need a little support again today. I feel like I have been needing a lot of support lately and not giving but I promise as soon as I come out of this and get through the dentist mess I will give all I can. Today is the 9th anniversary of my collapse from this illness. 9 years!!! Unbelievable. I say this every year but I remember when I first got sick and we didn?t know anything. I had to take 2 weeks off from school and I remember saying 2 weeks I can't miss 2 weeks. Little did I know 9 years later I would still have to be missing school. I am losing hope. When my husband gets down he says that we have to prepare that I may always be like this. And I have always truly believed no I?ll get better-I have to. But now I have this fear that it will be like this forever and I?m scared, sad and lost. I hate not having that hope anymore. It is not his fault he does not say it often just when it gets to be all to much for him too. I try to live day to day and if it is an ok period week to week. No looking back and no looking forward just today. Which has helped me survive this so far. I usually have a very good attitude about all this. I guess I'm rambling a bit but 9 years! I don?t think about the time that?s passed because I get like this and it is so hard. 9 years ago I was sitting in physics class- getting my degree in chemisrty-teaching ballet, dancing when I could and tutoring chemistry at the community college. I had just gotten married in august. I got a sore throat, then bronchitis, then a virus then horrible headaches. Then Nov 6 all of sudden in class I was so dizzy, got worse, drove home the whole time praying let me get home let me get home and nearly fainted at my front door. Doctor doctors doctors! POTS dx Doctors doctors doctors. Here I am still homebound still can?t stand for more than minute or two still feel like everyday is a struggle with lots of them unbearable. I have lost a lot of friends, like all of you found out who my true friends were. Even lost some family members as friends. It so sad. People have had children( another long rant which I have done before) moved, changed jobs and here I am still mostly in bed-trying to do things-feeling awful while doing them but trying-mini-dates-rides etc. One thing is that I fell in love with my husband even more but hate and feel guilty that this is ruining his life too. He really has been wonderful. Today I saw a TV add with 2 people walking through the woods holding hands and it made me cry because we use to love doing that. God I hate this illness!!!!!!!!!!!!!!! Its all so frustrating. Lately I have felt inside this urge to scream and throw things. It doesn't help to say this ?BUT IT IS NOT FAIR!!!!? Sorry I have said a lot and not enough but I know you all will understand. I am trying to keep my hope but it is fading and I don?t know how to handle that. So send me a hug or some strength or even just a thought If you can. It will help. I will be ok but today 9 years! Thank you Stacey

Hey, I get that allllllllllllll the time. It is so annoying! Sometimes my husband calls me the furnace. Don't know why it happens. My chinese doctor says in chinese theory heat can get trapped and you need help releasing it. I get cold and the chills too but lately more heat than cold. It feels exactly like I have a fever. Stacey :-)

Hi, I had a lot of motility problems that took awhile to find but one thing they did try on me was an injection of a drug called sandostatin sub Q (I'd spell that out but no idea how) :-). Now to be honest I could not tolerate the injections they were very painful but I also was down to 88 lbs and had nothing to inject into. On TPN the whole thing but slowly got back to 120 and beyond. As I was typing this I decided to look up the drug and though I am sure this was it , I am not sure why it was prescribed. Shands hospital in Gainsville prescribed it. Something to look into and ask about but I am not sure. I still have motiltiy problems but nothing like before, small meals etc do help. You might consider going to see a Traditional Chinese Doctor becuase I think that she has helped with my digestion and the pain. Worth a try. E me if you wanna talk. :-) Stacey :-)

Hey, Does it help with the tachycardia when you stand up . I have the hypotension but it is delayed the longer I stand the worse I get which I know we all do. But does the mestinon help with the tachycardia? Stacey

Yea I just tried it by clicking on it and it worked. Hmmm. But it did not work when I copied and pasted. Hmm and it is so great! I'll e-mail it to you if you want! Stacey

HI, This really touched me and I wanted to share it with all of you. http://i.euniverse.com/funpages/cms_conten...29/4candles.swf Stacey :-)

I hope he will be better soon and you both are in my thoughts and prayers! Stacey

Hi, I have been taking anti-biotics since I was 11 before going to the dentist. I have always taken Keflex and it never bother me not even at that high dose. I am like all of you very very sensitive to antibiotics in general but I tolerate the Keflex very well. It is rare that you will get a heart infection from the dentist but why take the chance is my thought. We have enough to deal with. Besides a little yucky burbing I really have not had a problem with Keflex at all. Just for a note Doxycycline is also one I can take with out trouble. Talk to your dentist but the 2000 is a normal dosage. I just took some Monday before the dentist and it was ok. The dentist was horrible but the anti-biotics were ok! Stacey :-)

Hey, I agree with Ernie it really does give more energy and when I get bad headaches and get nausea it always always helps that. Does your accupuncturist prescribe herbs too? I mean the chinese formula ones that they make themselves that they learned at a traditional chinese medicine school. My doc gave me a fromula for nausea and said it was also great for morning sickness. Accupuncture has helped my eating and my energy and she is till working on the POTS stuff but I think it helps. Stacey

YEAH YEAH YEAH! Nina you are so great! I can't wait to get them and to get people to order them. I am going to send an e-mail to all my friends and family and ask them to please buy one, that it would mean a lot to me! And of course I just can't wait to have that symbol of all of us being in this together! I am just so happy that they are getting made! Yeah yeah Yeah Did I say Yeah??? Stacey :-)

Hey, I know I have brought this up before but I had another tooth break Monday night and it has an abcess and now I have to get a root canal. The last one was sooooooooooooo awful and I need at least 5 crowns, with one tooth that is broken and hasn't been fixed. This is like the 4th tooth I have broken. I hate the dentist it kills me and a root canal. Its not as if we don't have enough to handle and just when you think ok I can handle this something else happens. I am so frustrated!!!! Did I say I hate the dentist???????? And of course we are out of insurance money for the year so I have to pay this all. Arghh! Stacey

Hey, I soooo know how you feel. In 1997 when I was finally diagnosed I was down to 100 lbs and eventually went down to 86. I was on TPN and it was awful. But slowly with the TPN I got a little stronger than I was able to eat a bit and then a bit more and now though I don't eat a lot I can eat enough. So I came out of the worst. I am still homebound and still have terrible days everyday but I did get out of the low point and as someone else says this thing waxes and wanes. Just wanted you to know that all though I am still homebound and mostly bed bound with a wheel chair when I go out I did recover some and am hopeful that I will at least get some more mobility. Keep strong and remember above all else their are others who understand. I think that helps me more on my dark days than anything.Hope what I said helped. I send you a hug and a smile! Stacey :-)

Hey, Thought I would tell you about a random act of kindness. My grandmother who is 83 takes me to a lot of my appointments since my husband works. We have a travel wheelchair that we use. Now yesteray after the blood draw she was taking me back to the car. I got in and then this man walked by and said Let me get that for you mam and put the wheelchair in the trunk for her. Said have a nice day and got in his car and drove off. It was so nice! We had to get the travel chair becuase she could not lift the regular wheel chair into the trunk. I can't tell you how we struggled with that one day in a parking lot and people just walked by. So this man helped us and it made our day. I know he is not going to see this but I thank him! There are sopme kind folks in the world! Stacey :-)

To ALL OF YOU THANK YOU! This has helped sooooo much. Since Frances is on her way we may be getting ready for a hurricane but my husband has promised some fun! Yea! I needed you guys so much today and I thank you! Will write more later in another post! You gave me my smile back! Stacey :-)

Hey all, Today is my 37th birthday and though I know I should be happy I feel sad. I can?t believe I am 37. When I got sick I was 28 and did not feel even that old and now I am 37??? All this time has passed while I am in this house and in this room. I do get out but it is no life. People my age have careers, they have kids they have lives and I am here suffering everyday and wanting it to stop. I can't even go anywhere by my self and getting to the living room is still near impossible on most days and so a carrer or life is beyond me right now. The other thing is when the ?wanting to have a baby thing? started hitting me stronger I was about 33 and all my friends were having babies and I thought well I?ll be ok if I am well by 37, 37 I can still have babies. And you know that always gets me in trouble the if I am well by this it will be ok. It use to be next week or next month then it got to be next year but now 37 is here, I am still sick still housebound and still just as bad as I was Nov 6th 1995. 9 years how is that possible. My husband says that who knows what it would be like you can?t live on the what ifs. He is going through this too and says the baby thing for him now is that it would have been nice to have kids especially when we get old and there will be no one to take care of us. I mean how sad is that. But my guilt over him is another rant and vent. But you know I so wanted to have kids and I so wanted more than this. I was a ballet dancer I was going to school for a degree I was just married when this caused all **** to break lose. I don?t feel 37. It is just so hard sometimes to count your blessings, and to see time pass. I try not to think about how much time has passed since I get like this but on your birthday it is kind of hard not to realize. I am 37 and I guess I am glad I made it this long but oh I want so much more. Sorry for the vent but I really could use your guys support and hugs. I know you understand and that helps a lot. I am 37 today I have a wonderful husband and a great family and some friends and I guess despite this horror of an illness that I do have some things. If you guys can spare any love and support can you send it to me cause today I am really sad. 37 I don?t even feel 25 mentally, now bodily 137 heehee Thanks Stacey

Hey all, You know this is so great that you guys are excited about this. We are working on a card that would explain to others about dysautonomia: I told my gran about and she loved the idea of the card because it is so hard to explain. Sorry brain fog is very high today but you get waht I am trying to say ya? :-) I am just excited that this is going to get done! Yeah! Stacey :-)

Hey you guys, This is great! I am so excited about this and that you are too. I know that I will give one to eveyone who knows my fight with this and maybe it will promote more understnading. If not for anything else we will all have something to remind us we are not alone! Yeah! Nina I am not sure I got that e-mail can you try again. Thanks Stacey :-)

I like that one. My sister suggested that if it were possible to put a saying on both sides that one side say something like "endure" for those bad days and the other say something like "thrive" for better days. Maybe not those exact words but I like the concept. Stacey :-)

Hey, What about Believe, Hope, and Love or Happiness, Hope, and Love Believe that this will pass, hope that it will and love for love. Blessings I wish for us all and something I think we need all to remember. Stacey :-)

Joke but how about: But you don't look sick HEEHEEHEEHEEHEE I am so glad you guys are excited about this. This is great and i think you all will really like having them. Thanks, Stacey :-)

HI everyone, I have an idea and I will need help figuring out if we can do this and how but here it goes. We watch the Tour De France and we love Lance Armstrong. Now his foundation for cancer is selling these yellow bracelets that say LIVESTRONG. It was his motto during his fight with cancer and especially when he survived. I ordered some and to be honest every time I look at it is gives me a lift. So I though what if we as a dysautonmia community had something like that it might remind us we are not alone and give us I don't know a reason every time we look at it to feel strong. We would have to have our own motto and figure out how to get them made and distribution etc, but I am getting ahead of myself. It is just that this small thing helps me everyday and it is not even for something I have and I would like it if I had something for us. I have looked up patterns for crochet bracelets which I could do and I know there are some other knitters/crafty people. The ones from Lance?s foundation are sponsored by Nike and are rubber. They only cost a dollar a piece and you order them by 10. What do you all think? It could be something we just do for us or we could use it to raise money or I don?t know. But it really gives me a lift and I would like to share this. Let me know what you think and if anyone is interested in helping me peruse this. Stacey :-)

Hi, Believe me we all understand. I know it is hard. At one of my lowest points when I was on TPN waighed about 88lbs and was just awful they kept telling me I had anorexia nervosa kept asking me if i threw up and I kept saying make it stop hurting to eat and I will believe me. And then a doctor said that I had a conversion disorder since they had not found anything biologically wrong the next day they found the dysmotiltiy. Also had a doctor suggest putting me in the hospital adnnd filming me without my knowledge because he said that I pushed my catherter in farther when it was actually not put in right adn was curled inside my heart. ( There is a name for that but my fog is very thick today and I can't think of it, wait Munchausens!) I still go through bad times even with family and friends but you have just got to keep telling yourself that you know you are sick and keep faith in you. It is funny my husband and i were just talking about this today and he said that he just read a Rodney Dangerfield joke that would be a good response. He was sitting at a bar one day after a bad show and feeling depressed and someone said to him oh its just all in your head and he said "That is like telling an ugly person it is all in your face" drum roll Not nice and remember it is Dangerfield but funny Anyway know you are not alone, that we all understnad adn just don't doubt yourself it is the hardest thing to do but don't give them that power. Believe in you and remember us! Stacey :-)

Hey, Yeah Ralph had to shut down his forum but I don't think he would mind if I gave you his e-mail so e-mail me and I will give it to you. I live in Titusville which is on the east coast of Central Florida. I do not have a POTS doc but my primary is willing to help adn I see a great Chinese doctor. E-mail if you would like Welcom to Florida! Stacey :-)

Hey, I have had 2 EMGS done and they both hurt. I really hate that test. Neither of them showed anything either. One of them I had to make sure my hands and feet stayed warm so if you can imagine this I was sitting at Mayo in Jacksonville, Fl with wool socks and gloves on. No wonder I got stares. I found it worse than acupuncture only cause once the needle is in in acupuncture the pain stops for me at least. Anyway the test is not to long but it is uncomfortable be prepared. Stacey

Hey, You know I have read many times that people with post-viral POTS are more likely to get better and not to be a downer cause I am still hoping for the day I can jump out of bed but I have had this since 1995. Been in bed virtually and housebound since then. And mine was surely post viral. Mine started with bronchitis and then a virus and then Nov 6th 1995 boom! it had me! I have been much worse in 1997 I was down to 84lbs so I guess I have recovered some becuase I can eat enough to maintain. anyway This "gift" as another POTS friend I know calls it effects us all in different ways I guess our recovery rate will be different too but like I said I am still hopeful for the day when I can get up and run! Stacey :-)