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"it's Not Life Threatening!"


jlmahon
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thanks future hope.

today i escape to the world of family and go to the zoo in the rain. :D

thnks for letting me get it all out here, so i can fake it till i make it with my family.

blessings and love,

bellamia~

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FUNNY THIS POST SHOULD POP UP AGAIN TODAY, as i just came home from my cardio after 4 days in the hospital when we were like passing ships and never saw each other. we made a plan when a doc does't get him by a page then i'm to page him till i get him. he was furious and went to checK his call log!

then we talked that i have no choice about going on florinef or he said we'd be looking at a HEART TRANSPLANT, this is HOW SERIOUS IT IS FOR PEOPLE LIKE ME WHO CAN'T TOLERATE THE MEDS. I FINALLY GAVE IN AND SAID GIVE IT TOO ME ONCE AGAIN. :D

BLESSINGS TO ALL~

BELLAMIA~ :D

Do you mind if I ask why a heart transplant would be necessary?

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my doctor told me this week we have run out of options with me. He really is leaving an ablation and pacing as a very last resort, but feels like that really never fixes the problem with POTS. I'm allergic to BB, can only take a sliver of clonidine, mestinon i do take but have severe side effects. I been on other meds midorine, even at bed time and florinef.

I really dislike them, they play havoc on my memory and quality of life. All this salt is making me sicker also. It's come to this now, take the meds or your heart is going to enlarge. There is no more time to play games. My weekly infusions have gone to 2. I can't even eat food anymore, I just cant keep fluids in me. My grandmother died at 54 of and enlarged heart. My doctor and I can only assume that she may have had similar issues. when your heart overworks this is what happens. :) i hope i made it clear as i'm not well, had nice day with family at zoo. did too much, drank gatorade all day, ate on way home came home and got real sick. :o solid food goes right through me.

bellamia~

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Oh, I see now. Thank you for sharing. I'm sorry you got sick but glad you were able to make it to the zoo. When my POTS had a terrible flare (immediately after having my daughter and hemorrhaging) they readmitted me to the hospital to rule out many things. One of those things was cardiomyopathy. They said some women develop an enlarged heart after giving birth and it only gets better with time and rest. Turns out it was POTS and not the other, but I didn't get my Dx until a few weeks ago and my DD turned two in April. So, I see how over working makes the heart larger and why they thought that could be it for me. It was obvious my body was not keeping up at all.

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Not life threatening! This is a silly thing to say if you are truly informed about this disease. We know of the drug sensitivity. this can cause a lethal outcome. Suicide is something that many of us have thought about and need each other for support. I have been told about many and this has come from a doctor who deals with vertigo.

Prayer's to all,

Mary

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Darcy~

once a week, i fake it till i make it!

i'm paying the price right now and will be lucky

if i don't end back in the hospital.

precious planet time is what we have, some

more than others.

bless you with your little one, and remember i'm

a challenging case as my doc tells me. most of his

patients can tolerate bb and other meds.

i have a team that manage me,

i've been like this my whole life,

only never knew till not that long ago

what it was as i was mis dx.

may you be surrounded be people who understand

and support your condition always.

blessings and love~ :)

bellamia~

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If POTS resulted in some sort of obvious physical deformaty then things would be different. By appearances we look normal - maybe a little glassy-eyed when dizzy or pale - but otherwise pretty normal. If i keep it together no one knows I feel terrible at all.

My dad had heart failure and his and my symptoms were almost identical (bar the coughing at night which I didnt get). he was worried I had a bad heart before I got diagnosed.

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I just found out my kidney function is starting to decrease. Just a small little blip which may correct itself and isn't anything to worry about at the moment but combine that with low thyroid and low testosterone as well as not being able to keep my ferritin levels within the normal range it makes me think something systemic is causing all of this.

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hi everyone..

u are all so strong.. stronger than u think... And the think about life treatning or not.. I am so sick of it.. For some of u it is very very life treatning and some of us , well more than the heatly ones out there... And life althering, yes. like one of u wrote, have forgotten how it was to be heatlty...

And I am going to my gp tomorrow, if i could change i would, she is in the not life threatning type..

I am blessed to have some (if not always) that try to understand, and admitts that they cant.. then there is the other ones, its so hard somthimes, spessaly when u cant ust shout them out of our life.. Ust have to keep hoping them will se me for what i am , like i try to them... They Are for the most part not cruel, ust ignorant... but somthimes it hurt the same on this end...

best of luck to u all

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I'm trying to learn to say I'm doing great. Most people just want to hear positive things and want to surround themselves with optomistic people. BUT it is so hard and I still at times give in to complaint when I'm feeling so deathly sick.

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good evening:

this is my safe place to tell it all, I don't have life threatening doctors, they are straight up as we have run out of options. It is here where I come for support and have tried my best to give support back to everyone when i'm able. Sorry if I scared anyone, all our cases are different.

Also, as i stated else where that my kids don't need to need to know all the details yet. they are just taking baby steps right now in the process of choinic illiness of their mother. like dominoes all set up in a line we are all effected and knocked down. Some fall sooner and are able to accept, others put on blinders as it's easier right now, and some get angry and pull away or lash out at me saying angry things to try to make me fight harder or just because they don't want mom sick.

i'm dancing as fast as i can. i have a sign on my wall as you enter my back door, it says, "please be nice or go away." I'm tired of being there for the rest of the world, tomorrow that sign is moving to my door. I don't think anyone has been able to see it. I want the same love my dog gived me, UNCONDITIONAL!

I'd also like the same support here and the FREEDOM to speak the truth.

I pray tonight that all of us affected by dysautonomia that we could all be magically cured.

Magical thinking worked when I worked wirh little children, as it bought me time.

Time to come up with a real plan, but this is reality.

POTS IS REAL!

Prayer For All of us struggling with dysautonomia~

I pray for more time, as it takes us much, much longer to get things done.

I pray for all of us to have understanding Doctors, Family, and friends who can give us unconditional support amd most of all love.

I pray for my hogher power to, "fake it till I make it," attitude to rise above when I'm at my breaking point.

I pray for paitence for myself and for others when I can't find my words or remember if I took my meds 3 mins ago.

I pray for new friendships here to enrich my life by an email, phone call, or video chat.

I pray that there is a reason why we are all gathered here together, grasping for answers.

I pray we are able to make Pots be found eariler, that one day all PC docs will screen anxiety and depressed patients

for postral pressures along with thyroid screening. MY CARDIO has told me many pots patients have been sent for shock treatment

when it was pots along.

I pray we here can make a difference to be blessed that each and every one of us get the right health care we deserve.

I pray that others start taking what we have seriously.

Dysautonomia isolates us, er's and hospitalist don't know how to treat us, should our doc not be on call it can be a nightmare.

I pray we all have an educated family member incase we're unable to speak.

I pray one day mine will be ready to listen and learn.

I pray for everyone here when I read your posts.

Sometimes I tell you in my post. but please feel free to ask me for any prayer requests.

I feel if we let go of stressors somewhere here, we feel a bit better.

I pray that to my higher power and thank him tonight as he has brought a new member in my email today that is not far away.

I hope I can be a comfort to this new menber and feel blessed tonight.

I give thanks to the lord for all this site has brought me.

And l look forward ro continued Love and Support.

May we just remember, we are all different, unique and have hearts that beat to the beat of a different drummer.

We all just want to get well, be loved, and have support.

Please watch over all of us Dear Lord or whom ever you believe in.

Amen~

blessings and love to everyone,

bellamia~

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Yes!! Sometimes I just way I am fine. Because no one other than you all can really imagine how bad I feel most of the time. Life threatening or not...this is really challenging at times. My boyfreind said today in response to my complaints..."ok, call me later when you are feeling better". I got so angry I thought "I do'nt usually feel better"...

I am so glad for you all! This forum is a life saverr for me!

:P

Erika

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