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Hello Everyone! Its been pretty long since I have posted something. I usually just read what everyone else is writing and think to myself "Wow, they go through that to?" or "Yea, I know exactly what they are talking about." I sometimes feel as if I am a bystander at a POTS meeting of everyone talking and I am the person looking in the window and wishing I could be talking to.

I mean, What do I talk about? After being diagnosed 2 years ago, I have almost learned not to talk or compain anymore. I feel there is only so much people can take of me complaining of my symptoms, even though they plague me everyday.

Whats weird about our disease is that...

A. - No one has ever heard of it and when you say thats what you have, you get that dumbfounded look as your response.

B. - We have so many "weird" symptoms. How do i explain to my husband that today I feel like I am going to pass out as soon as I stand, my back is killing me, my abdominal area is hurting and I feel like an absolute airhead with nothing left up there but literally air (fogheaded feeling).

Those symptoms dont even tie together to normal people!

C.- One moment we can be almost normal and feel like a normal person and with a switch of a imaginary button, we are gone. Body isnt working normally, Brain isnt working normally, all systems are down.

I could probably go on forever, but I am trying to keep this as painless as possible for whomever is reading this.

Im still in the Army. I havent gone back to my doctor since February and I want to so badly, the only reason why is because she wants me out of the Army ASAP because im nondeployable. I read all the time how hard it is to find a job out there, the last thing I want to do is lose the paycheck!

So I goto work everyday, I have a wonderful boss who lets me skate by as long as possible. But I worry everynight because I have no idea how long that actually is. Just for the record my Doctor is just really strict because there are people that can stay in the army who have : Aids, Cancer, and many other illnesses.

I wake up in the morning and if I feel well, I am so happy. I goto work and do as usual for everything. But as soon as I start to feel ill, and I know that my "normalsy" is soon ending, I immediately get depressed and think to myself "well there goes the day" I no longer complain to people around me anymore, I just try to pretend I am well and when i feel sick, i simply say "i just feel a bit blue today" and leave it at that.

Boy if only people knew what "feeling blue" really meant to us Potsy people. If only they could step one foot in our shoes for one day and see what we go through.

Is anyone still reading this? Well if you are, I thank you. Im sorry I just went on and on, but I guess I have been keeping it in and I just need someone out there to say "hey, i hear you"

:):( God Bless,

Jaime

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Hey Jamie I hear you! :)

I'm sort of in a similar situation where I'm milking being a student as long as possible, because as soon as I graduate, I'm going to have to face the fact that I'm essentially unemployable. Right now I can squeak by on 1-2 classes a semester, but I couldn't even work a part-time job if it meant I wouldn't starve :(

It's frustrating being sick. Most people I know with POTS were very active before getting sick, so not only do we have to learn to live with a chronic illness, but we have to reformulate our idea of a good time. I used to surf, ride horses go hiking...now an "active" day out means I go to the mall in my wheelchair.

I don't have any resolutions for you, we're both going through this together along with all the other wonderful women in this forum. I take comfort in knowing I have so many friends here who can relate to what I'm going through, who can cry and laugh with me (even when we're just laughing at ourselves).

((((HUGS)))))

Lauren :)

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Hi

I certainly know what you are talking about. It just amazes me that one day I can feel perfectly normal and forget about my illness. Then BAM it's all back again. What I really hate is the brain fog feeling. I am a teacher and sometimes I just feel so out of it. People will ask me what is wrong and I do not know how to respond. I just know that I will not be very productive on the days I feel like this.

We are lucky to have this forum.

Susan

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"I HEAR YOU!!!!"

and i do understand what you are going thru.. and am amazed that you are still in the army and working everyday.. amazing dear!

I understand why you are worried about leaving the army.. I stayed in school when I probably should have thrown in the towel.. b/c the excess in school aide and student loans.. is the only way I made it when I was waiting to get on SSDI... so i certainly understand..

take care.. and know that we are hear for you if you want to talk...!! you dont have to pretend to be ok here! you can let it all hang out...

lord knows that I chatter on and on sometimes!! LOL :)

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Guest sonotech

Hi Jaime,

I hear you ALSO! I am sorry that you have just been a "bystander" at the forum. Hopefully you will start posting more and get some stuff off your chest because it really helps to talk with people who understand.

I can't tell you how much I have learned about NOT COMPLAINING!! I know how even the people who are closest to you get tired of the complaints and it makes you feel so lonely.

We have to deal with this stuff everyday and need to be able to vent so that we don't go crazy!! But it IS hard when the people around you don't "get it" and get annoyed, like we just want the attention or something.

This subject has always been tough. I find it hard to be honest about the way I am feeling with even my closest friends and family for fear that they will turn against me. You see all those shows like "Diagnoses Unknown" where these people suffer for years and the family starts to think it is "all in their head" also and even spouses getting divorces over it, then when the patient gets an actual diagnosis.....they have no one left to support them.

We all understand!!! We are here for you!!! And will never get tired of you venting!! Thats why we are here.

Laura

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I hear you!!!!!!!!!!!!!!!!!

So many times my husband will say, "you are looking good today." An hour later he'll say "you're going downhill

aren't you?"

It's so frustrating I think I am going shopping, well by the time I'm ready to go I collapse and take a nap. A shower

wears me out.

The symptoms come and go, my husband refers to them as "the spinner card."

I sympathize with you going to work, I just can no longer do it. I went for years sicker than a dog.

I try not to complain or focus on my symptoms but usually get frustrated and angry after holding it in then everyone

hears about how awful I feel.

Hang in there, you are not alone.

Dawn

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hi jamie,

i am sorry that you're having such a difficult time. i hear you on: if only they could step one foot in our shoes for one day. i have had many times thinking: if only i could change places for ONE day. but not for the others to feel what pots is doing to me, but just to have fun for one day without feeling miserable. but i realize that would make me feel worse as i don't want one day, i want a whole week, a month, a year, MY WHOLE LIFE!!!!!!!! :lol::):lol:

hope you will be able to keep your job and have more better days,

corina :)

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I can totally relate to all of you! Since I was recently diagnosed after 13 years of suffering without knowing what's wrong and now I'm excited to finally be able to tell people what my diagnosis is. But when I do they get a puzzled look on their faces. Then I launch into the description of what POTS is and I can tell by a couple sentences into it that they are already distracted and thinking about something else. What really bothers me is if I just need to go to a regular doctor or the emergency room for some reason no one knows what POTS is or how to treat me. Shoot, even the dr. that diagnosed me doesn't seem to understand it that well.

Sometimes at night I start talking to my husband about my symptoms or feelings and then I hear him snoring!!! :lol: I guess he hears about how I feel so much that he tunes me out. It is so frustrating!

Jenny

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Hi Jaime,

I'm so thankful you wrote about your experiences as just last night I was very sad as I was thinking about all those things. Some of the people closest to me have distanced themselves from me and when they do call (rarely now) and ask how I'm doing and I say "just okay", they kind of pause and seem irritated by my reply, but I refuse to say that I'm doing great when I'm not because that's just a lie. I try to focus on that there really is no way for them to relate, because if you haven't been down the road we have, it is impossible to understand it all - but in one sense a person would think that since they knew us before we ever got sick and remember how we were than and compare to who we are now (as far as activities we could do and now can't), they should be more compassionate than they are.

On Saturday, I was talking with my sister-in-law and she was telling me how her mom had back surgery and that her mom was frustrated that she couldn't yet do all the things she wants to do until she's more healed and how she feels like no one understands. So I said that must be really difficult and that I could relate to wanting to do things but not being able to do them. At which point my sister-in-law rolled her eyes with this irritated look on her face - basically telling me that I couldn't understand because I wouldn't know how that would feel! Ahh - I wanted to almost smack her but at the same time, cry. Thankfully we were on our way out the door at the time!

Oh well, I guess that's life -

Tammy

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Hey Everyone Again!

I wrote that last night and kept looking on to see if anyone wrote back, no one had. So today I went to work and had an awful day (100 degrees here in texas) and came home, ran inside and immediately checked the computer to see if i had even just one reply. Lo and behold, i had all of you guys!!!

As I was reading what everyone wrote i just felt better mentally and emotionally. The struggle is severe, but its nice to know that other people are struggling with exactly what I am as well. We are not alone, and every now and then it is just so nice for me to hear that.

All of your words were really helpful, so thank you so much.

God Bless,

Jaime

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Guest tearose

Sorry to get here late...I did want to add my support and caring too! :lol:

You are never alone!

We hear and we are listening.

We appreciate how difficult it is to put one foot in front of the other.

I am sorry it is so hot there too!

hey, thanks for serving!

take care, tearose

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I read your message. And I would like to no the symptoms in which you feel. Etc. I have a step daughter that has POTS and I am lost in the dark...

Hello Everyone! Its been pretty long since I have posted something. I usually just read what everyone else is writing and think to myself "Wow, they go through that to?" or "Yea, I know exactly what they are talking about." I sometimes feel as if I am a bystander at a POTS meeting of everyone talking and I am the person looking in the window and wishing I could be talking to.

I mean, What do I talk about? After being diagnosed 2 years ago, I have almost learned not to talk or compain anymore. I feel there is only so much people can take of me complaining of my symptoms, even though they plague me everyday.

Whats weird about our disease is that...

A. - No one has ever heard of it and when you say thats what you have, you get that dumbfounded look as your response.

B. - We have so many "weird" symptoms. How do i explain to my husband that today I feel like I am going to pass out as soon as I stand, my back is killing me, my abdominal area is hurting and I feel like an absolute airhead with nothing left up there but literally air (fogheaded feeling).

Those symptoms dont even tie together to normal people!

C.- One moment we can be almost normal and feel like a normal person and with a switch of a imaginary button, we are gone. Body isnt working normally, Brain isnt working normally, all systems are down.

I could probably go on forever, but I am trying to keep this as painless as possible for whomever is reading this.

Im still in the Army. I havent gone back to my doctor since February and I want to so badly, the only reason why is because she wants me out of the Army ASAP because im nondeployable. I read all the time how hard it is to find a job out there, the last thing I want to do is lose the paycheck!

So I goto work everyday, I have a wonderful boss who lets me skate by as long as possible. But I worry everynight because I have no idea how long that actually is. Just for the record my Doctor is just really strict because there are people that can stay in the army who have : Aids, Cancer, and many other illnesses.

I wake up in the morning and if I feel well, I am so happy. I goto work and do as usual for everything. But as soon as I start to feel ill, and I know that my "normalsy" is soon ending, I immediately get depressed and think to myself "well there goes the day" I no longer complain to people around me anymore, I just try to pretend I am well and when i feel sick, i simply say "i just feel a bit blue today" and leave it at that.

Boy if only people knew what "feeling blue" really meant to us Potsy people. If only they could step one foot in our shoes for one day and see what we go through.

Is anyone still reading this? Well if you are, I thank you. Im sorry I just went on and on, but I guess I have been keeping it in and I just need someone out there to say "hey, i hear you"

:o:) God Bless,

Jaime

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Hi,

There is always someone here for support. :)

You are a trooper to keep on going, don't forget that.

At this point I don't even tell anyone what is wrong. I'll just say I am not feeling well. That's it. Even explaining what dysautonomia is, the glazed look comes over their eyes. Even the doctors as well.

Just remember we are here. :o

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I hear you!

Sorry it has taken me so long to respond, but I have not been feeling well.

Tring to catch up on all the posts.

Amber

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Hey,

I'm a Navy wife, so to be honest I'm surprised they haven't medically discharged you yet. I'm in the Navy's EFMP -- Exceptional Family Member Program and out of the 5 categories, I'm Cat 4. May be a Cat 5 when I turn in more packets from more docs.

Your profile says your husband got out and stays home with your son. Is it possible for your husband to work and you stay home with your son. Even for him to go back in if he wants to? If you stayed home with your son and your husband went back in you'd have the steady paycheck. Or even if he doesn't go back in he should still be able to find something. Especially if he starts looking now before you get out.

That is all assuming that you want to get out and he wants to go back to work. That may not be an option for you.

I've learned that with my parents I tell them most of how I'm really feeling. My husband I tell all. My parents I don't tell if I'm really bad until I'm out of it now because I don't live with them anymore and my mom gets very worried and wants to fly down here. My extended family and my husband's family I tell them I'm feeling okay today, or I'm tired today or today's not a good day if its bad. I don't go into detail, but I don't just say oh, I'm okay either. If they ask then I tell them. And most of the time they're genuinely(sp?) asking. And if they're not those responses work well for them too. If I just say oh, I'm okay, I feel like I'm lying and I feel bad. And I figure if they're going to ask, I'm going to tell them and then they'll learn that when they say that, its not just a greeting and they learn to think about what they say and other things. I feel it makes people think more and helps them understand about us more.

I hope things get better for you soon. You're really lucky that you have such a great boss. Make sure he/she knows how much you apperciate it.

Hope this helps.

UnicornIsis

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Hey Jaime,

I hear you. :lol:

I'm so impressed you are able to work. I miss working so much. So often I cannot drive so I'm basically stuck in the house with a teenage daughter that hates to help me out. I had no idea that anyone was going through this along with me. The only other person I know with this problem is my cardiologist and she functions fairly well.

I'm so thankful I found this forum and website. I feel like I'm not alone.

Take care and please post again.

Foofie

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Jamie...Bless you girl. And the fact that you are fighting to stay working in the army...It takes a lot of willpower and courage to do what you are doing..and personally I am at the point where it doesn't matter if anyone knows what POTS is:except that it is hard every day on our lives..

One minute I am almostnormal the next dysfunctional..don't give up girl and keep your head up.

This forum is full of support and wonderful people..

Belinda

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Hey! I was in the army too. My husband is active currently serving as a recruiter but we are normally at Bragg. Please email me at pskildum@bellsouth.net We are seeing civillian docs here in the Charlotte NC area and half of them have never heard of Dysautomnia or POTS. I am so worried to be laughed at next year when we get to the military hospitals. (Sorry if the typing is messed up but I just got out of the hospital for Bradycardia and Low BP). I am sorrythat you are going through so much. Believe my I understand> My big strong Paratrooper does not understand any of this and he hates to hear about it because they can't fix me. Sometimes I think he wonders if I a crazy. Then when I end up in the hospital it scares him so bad that it breaks my heart. I have had (dignosed) POTS and OI since MAy 2005 and it has been crazy. Now the docs are saying that I have Mitral VAlve Prolapse Syndrome (moderate to severe), and a bundle brach block, and all of that affects the POTS and OI. Any way I hope you get this soon! HAng in there and be proud!

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I know what your'e talking about! I wish someone could find that imaginary button that gets pushed to make us feel so bad all of a sudden. I think one of my most frustrating symptoms is the unpredictability of all this mess. I seem ok for a few hours or a few days and and then wham. I flat on my back. Haven't been able to work in 2 years. Had my disability phone interview today. Too sick to even go to the office and sit up long enough to apply. Last week I went to an appointment and almost passed out in my wheel chair. My husband laid me down on the waiting room floor. What a life! I try not to complain but just telling the facts is depressing sometimes.

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