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I need some support and help today


StaceyYount
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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

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Stacey

Happy Birthday!

If I could be with you in person I would give you a big hug--even tho I don't know you. You are my hero today--truly! It is brave of you to bare your innermost feelings and I am glad you have a place to do that with others who do understand better than many could.

I just turned 36 two weeks ago. Birthdays are always a time of reflection for me too--more than any other time of the year. Like you, I do use that day to look at my life, take stock, try to count my blessings, but also to let go, and that can be very very hard. Actually it just feels like the occasion forces those thoughts upon me--even more as I get older.

I so understand the baby issue. That is so natural too, to desire a biological child--we are hard-wired for that. I understand your yearning and feelings of guilt. Life takes unexpected twists and turns. I always tell myself this too when I get discouraged about my condition: Try not to project the future or force yourself into a mold. Try to bloom where you are planted, even if it seems to be in a rubble pit blocked from sunlight. Easy for *me* to say right now, I know.

I hope your husband and/or family will do some special things for you today.

Hugs, Katherine

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Stacey, Happy Birthday to you!!! We understand how birthdays can also bring up thoughts of sadness. We bring you birthday cheers.

I am really concerned about you. Have you exhausted all possible treatments, medications, doctors? Have you visited the Mayo Clinic, Cleveland Clinic, Vanderbilt, West Virginia University Hospital? My suggestion is that you leave no stone unturned.

Hopefully, something will work and make you feel better. If you would like to contact me, send me an email via the forum.

:unsure:

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I sent you an email to your personal email adress. But I also wanted to send some birthday smiles your way. Sounds like you could use a few.

:D:P;):unsure:B):):P:D;):lol:

May you get lots of Warm Hugs and Many Blessings today and every day!

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Dear Stacey,

Wishing you lots of birthday happiness. I too spent my birthday in bed this year, was really going through a rough spell. My kids and hubby packed up a picnic lunch and we all had a picnic in my bed, may sound dorky but it was special to me that they cared enuf to make my day as special as they could. Have your hubby go out and get your favorite carryout and do the same :)

Love and hugs

Sue

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Stacey,

happy birthday to you. I think birthdays make you sad. I turned 41 yesterday and had exactly the same thoughts as you: how is it possible all those years are gone just by hoping you'll turn better and it doesn't happen. I didn't celebrate my birthday because my husband has had a knee surgery and can't walk very well right now but we had a nice quiet day with the kids. I had breakfast on bed and in the evening we ordered food so nobody had to cook. My mother came by for a short visit just before she had to go to work. Well it turned out to be a nice day.

Wish you a nice day as well and hope you don't feel too sad although I definately understand you. Many birthday hugs,

Corina

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happy birthday stacey. am sorry this is so very hard for you. i am glad you have a supportive husband and family to help you through this. these times seem so hard, but you just have to live one day at a time. it does get better, it just takes longer for some than others. and as an ex ob nurse, let me tell you, lots of women have babies way past 37! so don't give up. hugs and prayers your way! morgan

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Stacey,

First of all Happy Birthday :D I can relate to you exactly. I am also 37(38 in Nov) I am feeling bad today too, it is the 2nd anniversary of my father's passing today, who I was very close to.

Anyway, I feel exactly like you. I have been sick with this thing since the age of 18-19. It was really bad at first but they kept misdiagnosing me, and I thought I was just going crazy because my mother had just died, I was a newlywed of 1 1/2 yrs and had a brand new baby(yes I started VERY early). Things slowly got some better but as time as gone by I have had more bad times than good. Not being able to leave the house, do ANYTHING, etc. Couldn't work for yrs. I did get better enough to got to school and work some but it was a struggle.(this is over a 20 yr period so I am trying to sum it up). Over the past 6-8 months I have been just like you. As a matter of fact, I had to resign from my job of 10 yrs in June (RN) because of this sucky thing called POTS. I rarely get out of the house-maybe once or twice in 2 weeks and that is only if my husband is with me and for a short while. I feel useless and very sad too.

Right now I am having a hard time getting a dr to cooperate with me trying to get my disability. My GP wants me to get Grubb to do it and Grubb, who has only seen me one time, says my GP has to do it because he is the one that is seeing me and treating me-which makes sense to me. So I am waiting for another call from my GP as we speak. URGHHHH!! Meanwhile, my bills are piling up rapidly.

I didn't say these things to make you feel bad for me, I just want you to know that you aren't alone, not at all. You said how I feel to a "T". I sometimes wonder why such a debilitating thing was ever "created"(for a lack of a better word). I truly believe that POTS and all that comes with it, is just as debilitating as cancer, heart disease, MS, etc-not to demean any of those other herendous things but I just think that we sometimes get looked over far too often and dr's don;t see what we are really going trhough, it is enough to make even the happiest person downright depressed.

Try and take today just for you, try and forget about your POTS the best you can even if you feel crummy and pamper yourself with a bubblebath, massage, or just reading a good book or crashing on the couch. If you can, sit on the porch for even just a few minutes. Sometimes if I force myself to go outside if it is just for 5 minutes I think it gives me a little lift.

Hang in there on the baby thing. You do have time left. I was working on the mother-baby floor when I resigned and I saw women having babies in their fifties!! you're still a young chick! Everyone probably knows my new motto by now but I am learning to live with it " One day at a time, one hour at a time, one moment at a time"

God bless and so many hugs sent your way, check your personal email!! :)

Danelle

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Guest Julia59

Happy Birthday Stacy! I hope this year brings you more happiness to you and your husband. Wishes and wishes for better health and better control of your symptoms.

Do you have a good ANS doctor who can help you have a better quality of life? I just feel so bad for you to be confined so much. It can get very depressing to not be able to get out. I remember in 2000/2001 I was confined to my livingroom couch. I never went out---and I couldn't sleep with my husband because

I would keep him awake. I was a very dark time for both of us---but things got better.

Blessings to you and your husband, and i'm praying for you to feel better and have more quality to your life.

Julie :0)

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Happy birthday, Stacey! I can't begin to understand what you are going through. In some ways, you are where I never hope to be in terms of my health. I am 28 and just developed POTS late last year. I could easily be in your boat at 37. But you have to remember you are still alive and could live many more years with this illness, so get out there and start living!

What are your worst symptoms that prevent you from doing the things you want to do? One by one, you need to make a list of all the things that help them get better and start doing every one of these things. So far the only things that have truly helped me are a very good diet (mostly organic foods, mostly vegetarian diet with seafood and plenty of dairy, lots of vegetables/fruits and low sugar), as much exercise as possible, yoga, lots of water and faith/meditation. A beta blocker keeps my heart rate down but doesn't make me feel any better, so I stopped taking it last week. 10 mg Lexapro probably only keeps me from crying and becoming depressed, but I keep taking it because I seem to feel slightly better while on it.

I know the child dilemma; having a baby brought this illness on for me. But I still want another, and I know I could get worse. But I might get better too. My neurologist says he has two patients who have gotten better with each pregnancy.

Write back about what your worst symptoms are and I will try to help as much as I can with ideas. In the meantime, have some cake, get outside and get some fresh air, and pick some flowers for yourself.

Amy

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:P Happy Birthday to you......... :P:P:P Happy Birthday to you......... ;):P:D:P

Happy Birthday to Staaaaaacey :D:D:D:P:D Happy Birthday to you ! :):P;):D

Ok so I might not be the best singer.....but I tried. I know how you feel, just like most of us do, so I tried to at least get a smile. :D:D:D

Paige

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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 :-)

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I wish you the happiest of birthdays Stacey! I know it can be hard to reflect back on the things you want but can't have, the things you missed out on, etc., and do give yourself a moment of time to be sad if you need to be... BUT, you're starting a brand new year, so think about things that you're going to do. I always pledge to myself to have more fun than I did the year before, and so far, despite this illness, I've done so.

Places I go to get a laugh or a big smile:

FARK, a website and community where you can read articles ranging from straight out news to absurd stories that will make you feel more normal by the moment

http://www.fark.com

SpaceWeather.com

to look at the aurora photos section to remind myself that there are amazing things out there beyond what I know or understand

http://science.nasa.gov/spaceweather/auror...ery_01aug04.htm

and also the government websites with photos of the sun that are typically updated daily--just amazing stuff

http://sohowww.nascom.nasa.gov/

I collect quotes that make me feel happy when I read them, like these:

http://www.heartquotes.net/Einstein.html

http://www.worldofquotes.com/topic/index.html

and I search for cute websites that make me smile

http://www.do-not-zzz.com/index2.html

and I daydream about vacations

http://www.croatia.hr/destinations/locatio...ationMainType=1

:) Nina, who is a bit older than you...but not so far ahead that I don't understand what you're going through.

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Hi, Stacey -- I get incredibly melancholy on my birthday too--and have for at least 10 years now (I'll be 43 in Nov. and posting a similar message then! :) ) So you're not alone in that piece ... but I was glad to see the forum has helped you find your smile today :D and that your husband has some fun in store. I bet he's a great guy... I agree with all the great advice offered so far... revel in your blessings today (which include having a place to share your sorrows) and consider this the first day of a new year of surprises ... May they be good ones and may you have healthier days ahead.

m

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Stacey- you are truly an inspiration. I did not realize what all you have been dealing with from your illness, and for so long. What a trooper :) And props to your supportive hubby!!

I think the previous posts give some wonderful insight, but I just wanted to add that I think you are an amazing person, and I hope you have the happiest birthday ever!!

I understand that feeling of wanting children, shoot I have one and I still want more someday, but only my health will tell if that will happen or not. You still have time to consider this. Many, many women have improved with their pregnancies (while the flip side is also true) and it may be something you and your husband will want to consider despite your health obstacles. Is it within the realm of possibility to have hired help in your home after the baby would be born? Do yu have a suport network that would be there if you were uable to care for your child for days or weeks at a time? That said, you would even be surprised what your body will do for your own child- I have been up chasing a toddler when I just wanted to die- asking for mercy and someone to help me...then 5 minutes later he will climb in my my lap and say "hugs ma" and throw his tiny arms around my neck, and every hardship is worth it. I'm not in a position to judge your situation, but I was completely bedridden when I got pregnant and from that moment on I've been walking around living a 75% normal life. It was my miracle :D

Anyways, please keep your chin up and ralize that yes, you do have many things in life to be thankful for, and we are always here to support you!! Happy Birthday!!

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hello stacey...

and i hope that your birthday ended up being okay...and that hubby did have a surprise! :)

and i wanted to say....HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY TO YOU! HAPPY BIRTHDAY DEAR STACEY, HAPPY BIRTHDAY TO YOU!

i think everyone should start posting on their birthdays! this is so great to make your birthday better.

i am going to have to check out those nina websites!

i do not think there is any way that i can top the absolutely amazing things that people have said so far...and such words of wisdom.

i am glad you posted today and let us know it was your birthday...and that it lifted your spirits some.

i haven't posted in a while b/c i have been so wiped out too, but your when i saw your post, i knew that i must get back on the ball and start posting again...b/c this site is so amazing and the people are so amazing...and i've been letting myself withdraw and miss out on that!

i just wanted to say, that like others, i could so identify with your words. it's like reading my own thoughts. i tell myself the same things as you do...next year will be better, and every year on my birthday i think, this is going to be the year. i am going to be 29 and for some reason it is hitting me...so dumb i know. but i haven't been on a date in 6 and half years. and like you, i want to have kids so badly. and, like you....i want to dance again!

i keep telling myself that well, i lost the 20's, hopefully the 30's will be great, but i am quickly approaching that. and still where i was when i first got sick.

i do love birthdays though...b/c they are YOUR day, just for YOU, all about YOU! so, i know you don't feel great about getting older, but i do want to say, you have a SPIRIT and a SOUL and a HEART worth celebrating...you really are amazing...i can't imaging 9 years of being pretty much homebound...even though, i am creeping up on it.

your post just made me sad, as did some of the responses. b/c although it made me feel more "normal" and less alone that many of us are in similar boats...it really makes my heart break...what makes it so that people who are so amazing must suffer so much? why do some people get better and others not? i know that is life, but i still struggle with the injustice in it every day.

i am sending extra hugs your way today...and really hoping that you will have what you so want...especially children.

i do believe that grief and hope are not mutually exclusive....you must grieve your losses (as you are doing), yet still hope for the unexpected and the good in the future. that's why i think birthdays are so hard for so many of us...b/c we have to find the balance b/w looking back, looking forward...and being here, now, today.

let us know how your birthday panned out! :D

lots of hugs, emily

p.s. i sooo wish we all lived near each other...we could have a POTS bday party...that would be pretty funny all of us lying there...no alcohol, no loud music, etc. he-he.

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hello Stacey,

I hope that you had an enjoyable birthday. I, too, wish I could be there to give you a big hug! Mine is Friday and I understand how you feel about another year going by living with this awful condition. Thank goodness there are so many wonderful people on this site to share our deepest feelings with and find just the right type of support when we need it most. And here, it feels OK to ask for that help. A wonderful environment!

I try to remind myself on my birthday that when this illness first took hold of my body I thought I was dying and really wasn't sure I would see any more birthdays. So, I remind myself that being here for another birthday is a GOOD thing, despite the quality of life challenges.

I try to identify at least 1 or 2 items that I have done that I couldn't do a year ago, no matter how small or insignificant they might seem to others and that is how I measure progress. If I think hard I can usually come up with several things to make myself feel better.

I hope that you can find something that you can count as progress in the year ahead.

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