9 years! :(

[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

[Star382000]

Stacey I am sending you oodles and oodles of hugs and thoughts and best wishes, oodles and oodles. Sometimes when it gets so hard, even trying to take it hour by hour can help some. You have a wonderful husband and this illness isn't ruining either of your lives, it's just drastically changing them. And from what you have said about finding who your true friends are and falling even more deeply in love with him, in many aspects it's changed your lives for the better. Just think, as quickly as it came on it can go. Hope dies last. 9 years, in the overall that is not too long a time, it is good to vent and get all these fears and worries out, it's great to do so so that they don't build up and you crash horribly deeper and deeper. The friends that you do have a wonderful and amazing, your husband, words don't exist to explain how wonderful he is and how in love you two are, you have a life many do not, you have love which many do not. You are hanging on to the amazing love that surrounds you and lifts you up on those days and hours and weeks when it gets hard. But just think of how powerful that is, love. Sending you oodles and oodles of hugs and thoughts and best wishes, sending you oodles and oodles of more love

[DancingLight]

oh stacey!!!

i just read your post. and it made me so sad. i feel so many of the same emotions as you on anniversaries and birthdays. it is mind boggling how it seems like yesterday that we got sick but it really has been years. i'm not at nine, i'm on my way to 7 and i can hardly believe it when i say it. you know?

your husband sounds amazing and you two have really learned the meaning of true love, not lust, not romantic love...but companionate love, the kind that lasts. that is such a gift.

still, it definitely is so hard that you can't do the things you love most--either together or alone.

and i know what you mean about every day being a struggle. ugh!

just the fact that you are still trucking along through all of this is a huge testament to the strength of your spirit. i do not say that lightly. sometimes i do wonder what makes us get up every day only to feel like crap still! but, like you, i have that endless hope and i don't want to miss out on the beautiful things in this world that i CAN still enjoy. sometimes i have to just hold on to tiny little moments...to remind myself that this is why i am here on this earth and want to stay here. you know? like a little moment with your husband, the fall leaves on the trees, the sunshine, etc. dreaming about dancing again!

this is NEVER what any of us imagined for our lives...and it is hard to let go of wanting more. like you, i live day to day, moment to moment, but sometimes, like on anniversaries, it is so easy to start wanting more, wishing for more, etc. i just want a day of not feeling like crap!

sorry i am not more uplifting in this post. i don't want to be all chipper and la-dee-da, b/c what you are feeling is so real, and i think you need to just let yourself be sad and grieve and cry together with your husband. you do stay "up" most of the time, so, give yourself the permission to just be sad for a bit. hey, if your going to be in the swamp, really be there! notice all of it!

i know you will have better days than today...just know i am sending you hugs and strength and courage and will say a prayer for you.

don't worry about "taking" and not "giving" right now on this site...we all cycle in and out of giving and receivign. i have times when i completely rely on others here and feel like i don't give anything. and other times i feel like i am giving back. we always have to have givers and receivers. if we just had givers or just had receivers....well, that wouldn't work, would it????

if you can't tell, i am still on speed! my grandma said, boy, you sound energetic and happy today! it cracked me up. whew, breathe, emily, breathe.

oh, and stacey, i know everything is a drag when you feel lousy...but if you can think of anything that would bring you joy today...totally indulgent....DO IT! even if it is watching harry potter again! or lighting a candle and remember that light is the light of god. there is light even in the darkest of places. i have to remind myself that every day, and every week when i light the sabbath candles.

okay, gotta eat a snack (is there a theme here...i am always off to eat it seems...)

later alligator!!!!

emily

[hayley]

im at the stage you are at the moment but ive only been ill for a year and a half .i faint between 5 and 10 times a day everyday but the one thing that gets me through is that i have so many dreams and so many things that i want to do.you probably have aswell so hold on to those dreams never give up i know its so hard but hopefully you will get to fulfil your dreams oneday good luck and take care.

hayley

[geneva]

Stacey, I was so sad when I read your post and I can't find the words....at least not the right ones....to know how to respond. Reading about your 9 year anniversary made me stop and think where I am....last month marked 5 years since the onset and next month marks 4 years since I was diagnosed. These anniversaries are the worst aren't they? I think anniversaries should be used to RANT and RAVE -- to the extend we don't worsen our symptoms (LOL)

I also had another thought reading your post and that is that you must have a pretty terrific husband and marriage. You got married in August and then sick in Nov and 9 years later he is still on the scene? He must be a keeper! AND, that must say something for how special YOU are too. I married after I became ill to a man I had known years before. I think he felt he could somehow make me better and while I have improved, I am not back to normal. I often wonder if he ever thinks he bit off more than he can bargained for....only got the courage once to ask...he said he is happy so I don't ask anymore...just enjoy what we have, limitations and all.

You are so right about living in the moment. When I get down, I pull out my copy of The Power of NOW and let it reinforce my commitment to not looking back (except for a quiet moment) and not looking to far ahead and wishing "things" were different....it is true, all we have is today....and sometimes we just have to make that be enough.

Thinking good thoughts and wishing you a better tomorrow.

[Herdswoman]

Sorry about your downer days. Hmmm. Sounds like you married my husband. Is he handsome, about 6'1 and balding? Smiles with his eyes, laughs from his belly and listens from his heart?

Seriously, there are tough times and then there are.... the anniversaries. Ouch.

Your husband is a wise man.

There is nothing wrong with preparing for the worst. I was married once before, divorced and have never, ever been without Plan B ever since. I take a certain amount of comfort in that, even though at times it has been a real hindrance.

Plan for the worst. Pray for the best. And never, ever lose hope.

Planning for the worst is only being smart. So have a house on one floor with wider doorways, so what. So structure your finances differently.....in the long term - and the short term - you'll be glad you did. Planning a long term life around a disease isn't the same as losing hope.

We were in the store yesterday when I realized we were holding hands, walking what was (in the past) our usual pace...only I was in a motorized wheelchair.

Last year, I set speed records in our dragcar. This year, I hoped to finally get my NHRA competition license. Instead, I got a house that is easily compatible with ADA guidelines. This afternoon I came home from the track with my husband, as a matter of fact. We had taken a wheelchair and there I was. People looked at me like a boat anchor, not like the woman who was featured in High Performance Pontiac magazine. Yeah, it hurt.

But only a little - because I only let it hurt a little.

Because I have hope.

I know who I am.

I know my accomplishments.

I refuse to judge myself by the world's standards.

I daily pursue my personal best.

I know my life would send most of those macho men into a depressed crying tizzy and they'd never pick up another wrench, let alone be seen in a "diminished" position in public, let alone traditional "guy turf" like a dragrace.

I know I have a strong husband.

I know who my friends are.

And when I really feel down, I know where to go. Just like you.

You are strong.

You have hope.

You know who you are.

You know your accomplishments.

You daily pursue your personal best.

You have a strong husband.

You know who your friends are.

And if this disease means giving up certain things, I will focus on what I have, just like you. Only I will get the biggest, fastest, *****-red metal flake motorized wheelchair and put nitrous on it.

And when the day comes that I can no longer get out of bed, I will ask the motorized bed salesperson what sex positions the bed is most famous for. I will wink and smile and ask for a bed trapeze......

I will take my stool sample for gluten sensitivity and accidentally send it to Social Security instead of the lab. Social Security can then document my confused mental state and expedite my claim.

Bring it on!!!!!!!

But of course, this isn't my anniversary of my illness, either. I hope you'll listen to me then and try to make me laugh.

Because as long as we can laugh, we can hope.

A long hug for you, my friend.

Edited November 8, 2004 by Michelle Sawicki

[StaceyYount]

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

[Guest tearose]

Dear Stacey,

I'm not very chipper tonight so I'll just sit beside you and cry with you. Okay, that's enough crying.

Well look at it this way, you have 365 days till you have to think about this anniversary again!

How about this, do you have something fun coming up to celebrate soon? How many days till your birthday or half-birthday?

I get a kick out of herdswomen. I want to start singing "I am woman watch me roar". Don't ya just want to hop on a harley and spin off into the sunset after her writings...she's a hard act to follow...

Fact is sweetheart, you are strong and we do feel you pain and wish we could make it less a burden.

Make a wish on this day, since you know it is an important day. Make it somehow different this year. I am wishing you the comfort of loved ones tonight. hugs, tearose

[MomtoGiuliana]

Stacey--

I know how hard anniversaries, birthdays, holidays--anything that makes you count the years and the difficulties, are. You and your husband are AMAZING. You have weathered more than most couple may ever.

Of course you feel it isn't fair and why you?! The medical community is slowly learning more about this condition and treatments all the time. I hope the next year starts to bring you some relief and recovery.

Meanwhile, don't give up on your dreams. They are important.

I always think of you now, when I see your posts, of that photo you shared of that lovely woman sitting in her yard, casting leaves to the wind. I think you have a strong spirit.

Hugs, Katherine

[calypso]

Stacey,

I started to cry tears when I read your post ... then I read Herdswoman's reply and laughed harder than I have in weeks. (I like the Social Security bit.)

Anyway, I am coming up on the one-year anniversary -- hard to forget, because it's a few days after my daughter's 1st birthday. And that's hard enough to be one year in, let alone NINE! I agree that you definitely are allowed to shout IT ISN'T FAIR today.

I say this to myself every day. I have POTS in the hyperadrenergic form -- only it has my metabolism so high that I am literally burning off muscle and am down to bones and some skin. I feel absolutely gross. And thank God I have a husband who also is way too understanding -- I wish he didn't have to suffer with me, but he does because he wants to spend time with me, and that time has to be spent doing things like watching movies and taking naps because I can't do what I used to.

But there have been many cases of people who suddenly get better -- for whatever reason, be it finding the cause of your POTS or a diet that improves symptoms drastically, or a medication or acupuncture ... please don't give up.

We have to hope that we will get better -- it's all we have.

Katherine, you are right -- that photo is a great photo of Stacey and captures her spirit -- don't let that die.

amy

[DancingLight]

aaaahhh....

i am crying and laughing at the same time too...herdswoman you are a riot and calypso you made me cry! (so did some of the other posts...)

katherine, you are right that stacey and jim have weathered more than most couples ever do. it gives me faith in men again!

emily

[Radha]

was just reading all your posts, and thinking what a wonderful group of people you all are, i dont have anything to add that someone hasnt said before, just that i understand completely and think this sadness we feel is the same as when we grieve when we lose someone very close to us, we have lost so much and we cant help but grieve at times, its not realistic to be hopeful and grateful all the time, even though we have to be those things too, sometimes i know i get sick of feeling grateful for all i have, and just want what i dont have! but then i try to refocus my thoughts back to all the love and support i have, being in a state of gratitude does help, sending warm thoughts to all of you

radha

[StaceyYount]

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

[goldicedance]

Hi, Stacey...Sorry I am late with this most. I am glad now that you are little cheered up. Anniversaries can be sorrowful things. Thank goodness, they pass although we still feel those twinges throughout the year.

I am going on my 11th anniversary. I keep fighting on with POTS and never giving up. I have had good days/months and bad ones. Right now I am going from bad to good with mestinon. I have my fingers crossed that it will last.

Your husband is certainly a keeper. It must be very difficult for him to see the love of his life suffering so. You are indeed blessed with a wonderful husband.

Keep the faith!

Lois

[opus88]

Stacey,

Ugh. I've been in the depths of despair where you are, agonizing over losing 2 very promising careers plus my ability to sing, and riddled with guilt over what my husband and others have had to deal with. We must allow ourselves a chance to grieve over our losses, but then work through and past that in order to move on with our lives.

As you mentioned, you have hope ("as soon as I come out of this . . ."). That's sooo important! Hang on to that!!! Herdswoman had many very wise thoughts to share, and I know you will take those to heart.

If I might add something from a different direction: Take your health into your OWN hands instead of relying on the medical world. For 17 years I've been working on my health - at first in conjunction with doctors, but after 20+ doctors and getting nowhere (and in some cases getting worse!), I went off on my own.

I have tried many, many, many different things - some very helpful, others not at all. But getting involved with the Metabolic Typing Program just a couple of years ago gave me back my life. I was just this side of bedridden when I learned of this program, and it has been WELL worth every bit of sometimes difficult effort and every penny spent. You are dealt with as an individual rather than whatever category the doctors arbitrarily put us into. Your individual body chemistry is of prime importance in setting up the beginning stages of your program. From there, retests, personal feedback and counselors from the program help you fine tune to your particular needs.

Taking control of my situation, even when I didn't get the results I had hoped for, has been extremely important to my mental well-being. I know you will find the same. I would think that your background in chemistry would give you a huge advantage over someone like me who knows nothing about chemistry and also has to fight severe brain fog most of the time.

We live a life of hope and setbacks and then more hope. That may never change, but the severity of the setbacks can be greatly lessened. Trust, hope, faith, gratitude . . . I think we have more of each of those because of what we live with. I hope you will very soon be feeling those positive vibes and rediscover the fighter within you. Until then, we're here for you and with you.

[Guest GayleP]

Stacey,

I finally got around to responding to your post.

I don't have anthing to say that hasn't already been said except that I know how hard those anniversaries can be. It's amazing how fast time goes by.

Like you I wasn't married very long before I got sick. This is a second marriage for us and so not the life we had planned. I also have a supportive husband and like you feel bad at times that he has to put up with so much.

The one thing he reminds me of when I complain that out life is not normal is that we now have a new normal. We can't go out and hike, bike ride and take long walks anymore but we can do other things like watching movies, listening to music, playing with the dog etc... And he's rather be with me doing those things than not. If I think he can't deal with it it's ususally my issue not his.

I'm sure your husband feels the same way. For now your life has changed, maybe you'll get better, maybe you won't. But you guys have each other and that's the most important thing.

Hang in there.

GayleP

[Jersey Girl]

Stacey, I'm so sorry that you have had this for so long. You are very fortunate to have such a wonderful husband. And we are all very fortunate to have this site to share our comomon issues and help each other the best we can. What did we all do before the Internet? I know that I have had to drastically change my daily activities from what I did before becoming ill. I have had to make extra efforts to maintain some friendships because everyone is so busy it seems these days. And those days when I feel worse, I feel really bad for myself. So I have to pick myself up, not fret about it, and tell myself that this too shall pass. Herdswoman has the right attitude. Hope this finds you feeling a little more at peace. Martha

[StaceyYount]

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:-)

[MomtoGiuliana]

Stacey

I so understand the yearning you feel, even though I was not as sick for as long as you have been. It IS those seemingly little things than can hurt so much. It's those times of pain that can also help you to accept your reality by bringing it so sharply into focus, to remember to love yourself for who and where you are (you have had no control over the circumstances that have largely shaped your limitations), and to focus on what you CAN do within your set of limitations.

What different treatment regimes have you tried? I know you are active on this board so you are probably as aware of any of us of the different options out there. But I was just thinking that perhaps if you shared with us (probably again) what has NOT worked for you so far, that maybe we could all share with you (and your doctor) some other options that could be attempted.

You said that you haven't been able to stand--for nine years--correct? I wonder if you have tried the tilt table therapy Ling mentioned, or if that is something you could try, for example. Even without access to such therapy, there are exercises that could be done with a physical therapist or at home that would mimic this therapy.

BTW, how is your latest afghan or other crocheting project going?

Keep talking to us--let's see if we can collectively help you as much as possible.

Katherine

[Guest GayleP]

Stacey,

That's a good idea ( what Katherine said) re: letting us know what you have tried and what has not worked for you. Then people can share iwith you what has helped them.

I know what you mean about feeling alone with this. Illness can be lonely. The bottom line is that even if you have supportive people around you they're not actually going through it like you are.

What has helped me through much of this is acupuncture and Reikki. Both my acupuncturist and Reikki healer really believe in me and believe I can get better. They are invested in my getting better unlike my western medicine docs who don't really care that I have been sick for almost 10 years. It really matters to them that I get better. Most important they give me some hope to hang on to that I will start feeling better. And I have to some degree.

Anyhow, hang in there. I think it's normal to have some days where you just want to scream that it's not fair. I usually just go with that feeling and not try to fight it. If I feel like I'm in a funk for a few days I know it'll pass and I'll eventually

get back to my more positive self.

Take care,

GayleP

[StaceyYount]

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 :-)

[geneva]

Stacey, I am sorry you are feeling down and I know that worry over your father right now is adding to how poorly you are feeling. I am glad that you choose to keep coming back to us. It is really hard when we have no one outside this group to talk with who can fully understand how bad it can get. I'll share 2 stories with you...my husband had an accident recently and after about 10 days, he sighed in frustration and said, "I am SO tired of being in pain", then he looked at me and smiled because he "got it". Another friend had an inner ear infection and was dizzy for 2 or 3 days and called me and said, "I had no idea what you go through but if it is like THIS, I don't know how you manage". Occasionally those around us get a glimpse at what it is like but then when the difficulty passes for them it is easy to forget and move on. Unfortunately we can't always move on.

I know your case is one of the more complex, or at least it sounds that way and you have certainly been down many paths looking for a treatment that would give you sustained improvement. I very much agree with you about NON Western treatments and working on the whole body. I can honestly say that trying yoga earlier this year has had more positive impact on my helath than anything else I have tried. About the same time I went med free except on an add needed basis and just try to accept my body at any given time. Easier said than done of course.

I wish I had some ideas for you but I don't know what to suggest. Perhaps others will. Maybe TIME and just coming to peace with those things around you that can't be changed. Wishing those people who have moved on GOOD wishes. If you believe that you get what you give.....not trying to be too philosophical here....but I think when we release positive energy, it is returned to us. Just look at how this site works!

Take care and I hope tomorrow will be a better day for you and your father.

[Nicole's Mom]

Stacey,

As the mother of Nicole who has had 8-1/2 years of illness I can understand how you feel just knowing what Nicole goes through- her hope waxing and waning. We spend a great deal of time reassuring her that she will get better.

I read over your post from way back that listed all your symptoms. I really feel for you and I know Nicole would too because she can relate to being so sick and so sick of being sick.

I think it's natural to feel grief and when Nicole cries we try to soothe her. Crying always makes her feel better. I hope you allow yourself to cry. It's great that you come to this forum to vent. Nicole vents a lot.

In spite of everything, most of the time Nicole does not let go of hope. But sometimes she does.

Her POTS doc ( I will post about this when I can drum up the energy) just informed her that he cannot help her "at this present time" - even though he expressed empathy and compassion. ( I will explain at some other time and describe how it "felt" to learn this when we most banked on getting help). We just had a phone consult with him yesterday.

This is not meant to bum you out- this post - only to let you know that you are not alone. In spite of disappointments and dead ends I will not quit looking for answers and educating myself so I can help Nicole get well. There is still so much more to learn with this complex disorder. Sometimes it's daunting. If I was well myself it would be easier. But I try to pace myself. I truly believe that to give up looking for answers is to give up hope.

Just one question more- you were so good to list all your meds. You tried Florinef I see. How would you rate the hypovolemia aspect of your illness? I never quite understood if everyone with POTS has hypovolemia. You didn't mention salt and fluid intake in your med list.

I am so sorry that your father is so ill. I hope that his mental confusion is from the meds. This was the case with my mother-in-law. After a knee replacement she was completely and utterly out of it and confused and we were worried but it was meds.

Take care- Stacey. I will think good thoughts for you as I try to find answers for Nicole -hoping that what might help her might help you.

Beverly

[StaceyYount]

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!!!!!!!

[Guest tearose]

Hi Stacey, how are you? I just re-read this thread and thought a lot about it. It shows how in the ups and downs of the days of your life, you've been dealing with so many things and still you keep putting one foot in front of the other. I hug you and give you gold stars for that.

Just when we figure out a formula for the treating the pots we need a new one!

My sadness wells up when you speak of your dad. I understand what you are going through because my dad had lewy bodies dementia with PD like syndrome. They first thought is was PD but then as they learned more about this disease it seems like it was more the lewy bodies than anything else...there is so much we don't know. I just remember how hard it was to see him slip away into his own mind/place and not know if he knew I was there. I really do think he heard me and felt my presence and just could not express it. In fact, there were moments of such total lucidness and clarity I could not believe it! Like he was totally okay!!! So take whatever time you can with your dad when you feel strong enough. You already seem to make every day the best it can be. I am with you in spirit right now and hope you find your way through this trying time gently and feeling loved. with support, tearose