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DancingLight

Ernie And Others Who Are Mia

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This has been a rough year for so many, and I have noticed so many 'oldies' missing...

Just wondering if anyone knows how Ernie is doing (noticed she hasn't been on in over a month?).

Or Briarrose (as Roselover was wondering)....

Or MaryfromOH....

Or Laura?

The list is so long, I know I am forgetting a whole bunch of folks at this moment...

If you have been away and are up to posting how you are doing and what is going on in your little world...let us know...I'm worried about so many of us being in the canyon!

It's been good to see other names pop up, like calypso, roselover, michiganjan...

So, this is just a post for 'checking in' in case you don't feel up to starting a new topic, but are able to just check in for a moment!

You are all missed.

Emily

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Emily,

Good topic! I've been wondering how some others are doing too.

I've been wondering how Ernie is doing. I've had to come and go a lot over the last 2 years (depending on internet access), but whenever I was able to check in I always remember seeing Ernie's name pop up as she posted. I've missed having her on here these last 6 weeks or so. I sent her an email, but haven't heard back.

Does anyone know how Ernie is doing?

Rachel

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Yes, Morgan, you were MIA for a while and it was very sad! :rolleyes:

As it is when Sunfish and Poohbear are gone...

Others have been popping up a little bit, but mostly quiet...like

Gena??? I want to hear Ruby stories!

And Katherine...see you post here and there and wodnering how you are doing without the pitter patter of Sabine's footsteps on your hardwood floors? Soooo hard to go through...

Em

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Hello. I've only posted a little over the last few months. So much has been going on! I'm now a lot healthier and a lot heavier than last year. Since starting Epogen I have gained over 50 lbs! :o But as my folks and friends keep saying- I'm here, and I'm ok.

I still crash- have just had a week at home because of one- but I bounce back a heck of a lot quicker these days than I used to. My head is in a better place than a year ago, too.

Life is good. I'm starting to really enjoy my PhD at Oxford. My first article was published in America last month (University of San Francisco Medieval Forum), and I've just won the College senior scholarship for next year which lets me dine on high table and gives me about ?350 ($700?).

I've been celebrating the end of my annus horribilis in style. I took my Dad to the Royal Opera House in London last week- best seats in the house, a real treat. Also booked a night at a really plush hotel. Was on my feet for ages and did lots of walking. Paid afterwards, but my Dad's happiness was worth it!

Next month I'm taking my Mum to Edinburgh for 4 nights over Mothering Sunday. I'm going to spoil her rotten too. It makes me feel so happy to be able to show my parents how much I appreciate them always standing by me :)

I'm not cured, but I'm coping :)

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Life is good. I'm starting to really enjoy my PhD at Oxford. My first article was published in America last month (University of San Francisco Medieval Forum), and I've just won the College senior scholarship for next year which lets me dine on high table and gives me about ?350 ($700?).

That is so cool! While we never read about English or Scottish literature, we get a lot of the medieval journals for Italian works, too. So that is quite an accomplishment- well, not just the article, but all of it!! :o

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So, I've seen briarrose post a couple of times...and esp. under the documentary section. So you're still out there! Check in if you can!

But, still no news on Ernie or Gena or MaryfromOH or others...

And, dizzygirl and dizzydame have been very quiet this week...

And Sophia?

What, are we ALL dropping like flies now?????

Corina????

Morgan?

Where oh where are all of our jabbermouths. ;) Sorry, just teasing, but me, and sunfish, and morgan and dizzy and on and on...well we are chatty cathys! there's just no denying it!

I never did learn brevity from Ernie, did I????

Check in if you are able ladies! You are missed!

Love, Em

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oh emily, what would we do without you???!!!

i'm just checking in to do some reading but am mostly too exhausted to write myself. i'm only answering one or two now and then. we are still struggling with our rebuilding but it takes soooo much energy (and i don't have to DO anuthing, can you imagine :blink::lol: ). my new kitchen is beautiful (not finished yet but almost)but there still is A LOT to do (new bedroom, new floors downstairs, a lot of wallpapering, painting etc.). will write more as soon as i'm up to it. do know guys that i'm thinking about all of you!!!

corina :)

and thanks for asking emily, hope you are okay???

btw: i've been writing with ernie a lot last year but couldn't do that anymore, just now and then. i didn't get an answer on my last writing earlier this year (but maybe it got lost). i hope you are doing okay ernie!!!

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corina you always make me smile :blink: a jabbermouth is someone who talks a lot (or, on a forum like this, writes a lot). in otherwords someone like me!

i did actually meet MaryinOhio (and her daughter & hubbie) a few weeks ago just by "chance" at dr. grubb's office so hope she won't mind me posting that she's at least hanging in okay even though she hasn't been on the board.

:lol: melissa

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I'm here, barely...CHEEZ, life is sucky for everyone right now.

I pulled a bunch of muscles in my back...rolling over in bed(what a weenie) and tweaked my pacer, like tore the muscle and scar tissue around it. had to get x rays and a tune up. So it's been a real pain. The gal that does the checks said itsy bitsies like me tend to do that. I have the upper body of a child and the butt of a hippo. :unsure:

I am paralyzing again on 60-70 meq of K+ a day! Good grief. My K+ is still only 3.5 on that amount. Give me K+ over any other drug, any day. I HATE paralyzing. I had the labs done for aldosterone 3 weeks ago and never heard back, will be darned if i will call them.

I've been having tons of night sweats, I am on hormones, and haven't perspired for years, so not sure what that's about. I don't have any flashes during the day or any other symptoms, I say it's from meno, but who knows with our bodies and a lack of doctors to find out.....

I have emailed ernie a few times and don't hear back. I don't have her phone number or I would call her. I am really worried about her, this is not like her at all.... :(

I lurk, but when it comes to typing, I am getting bad. Lazy, but it hurts me and my shoulder right now. I must have done something...ROLLING OVER IN BED.....it's making funny grindy noises and crackling and popping all the time. It grosses out hubs, so that makes me laugh anyway. A stomach growl makes him want to go to the ER... :lol:

Anyway, don't know why I am wandering about like this.....no brain cells left...I now have some regrets that i never partied, or was wild or smoked.....because it doesn't seem to have done me any good to have been good!!!!! At least I'd have a reason for looking and feeling like I'm 92......woeismemorgan

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I remember Ernie participating pretty actively for as long as I've been on the forum, so I too am a bit worried. Is there anyone that has her number (or can look up her number) and call her to check in?

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Wondering where all the oldies are myself.

i have not been online as much and when I am, trying to not address my health issues and other stuff I must learn to improve...

my insomnia is in high gear...plus i am listening to MANY motivational tapes that business people use but working on my attitude...tapes that been around forever...the late great Earl Nightingale, Napoleon Hill's book, Denis Waitley...some CD from early tonight was most powerful about attitude and what we put out to people....so easy to forget when we are not feeling fantastic...but some of it was almost life transforming to listen to Earl in his rich baritone voice..,or maybe I was just in a place to finally hear it.

so we all do what we need to do to stay sane...and sometimes I think that means taking a break from talking about our illnesses ....but I know for those in critical places, answers are needed besides attidude.

Morgan I am sorry you are paralyzing and stuff again...and the aldosterone testing...if that was even done corrently which I hope it was.

To all those MIA, I hope you are busy living life or just thinking about other things.

Peace

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melissa, thanks so much for explaining!!!! i LOVE this word. i will use it here at home as my sons (and i) are real jabbermouths as well (can you imagine how my husband must feel when we are all gathered around the table having diner??? :):lol::lol: )

corina :)

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Ernie

Hope you are ok.

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i have been wondering about miss ernie too.. hope that hse is allright its not like her to be inactive on the forum for so long..

ernie let us know how you are dear..

Ive been laying way low in recent weeks... Im having alot of paralysis spells.. or wahtever these things are im having.. IM now wondering if im having tru periodic paralysis.. all the time i mean..and i do have documented low potassium levels... I have had some where my body goes limp.. but those dont happen often... instead my body get really really really stiff.. when i cant move.. Im wondeirng if im having seizures or something.. more periodic paralysis.. only b/c some of the things going on dont quite fit into the mold realy well of pp..

I havent been posting much either b/c I feel like im a broken records rambling about the symptoms over and over.. and it get kind of depressing after a while.. same stuff with still no answers or real treatment.. errr --effective treatment i should say...

but ive been thinking of you all tho and wondeing how you've all been!

hopefully--miss emily-- i will feel llike a jabbermouth again soon.. i see your leaving me in the dust.. just kidding! :0)

silentjabberjawsigningoff

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I'm here too, sorry I haven't been posting in a few weeks. I began to have seizures as a result of coming OFF my antibiotics for treating my lyme disease (we had to stop them because they were making me too sick). I've been sicker than I was when I was having horrible reactions to the lyme treatment. It's been very rough both emotionally and physically.

I would have posted, but I assume that no one on the forum has had any experience with seizures caused by lyme, as this is a POTS forum. Right now my doctors aren't even sure we can retry the antibiotics, which means I will only get progressivley sicker over the years. I'm already bedridden, so that's a very scary thought.

Anyway, sorry to come on after weeks of silence just to whine. I'll be back for real once I'm in a better place about all this.

PS. Ernie, I really hope you're ok dear!

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Hi everybody,

I've been mia also for awhile. I'm in the last couple months of my first full year of college, and after doing my everyday basics and then school and then homework and papers I have been literaly exhausted. My 20 year old daughter is also in her first year and we took almost all of our classes together this year and it REALLY helped when I couldn't drive or just plain felt bad and it made me feel better to know if something happened, she'd be around. I also took classes online so that helped to. It's been rough at times but it also has been a real good feeling of accomplishment and even that somehow makes me feel better, plus I surprised myself so far with a 3.5 GPA.

Kim

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Go Kim, that's awesome! Lauren- I'm so sorry you're feeling bad. And Linda too! Biggest hugs to both of you. Lauren and Linda- can you email me or pm me your postal addresses? I have something in mind that I want to send to you both...

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Dancing Light, hope you're still out there

Thanks for inquiring. Sorry it took 2+ years to get back to you.

I'm doing much better and after a few years of agonizing ****, I would consider myself very fortunate to have some great treatments and supporting doctors, special thanks to Dr. Grubb as I would definitely not be this normal without him and his game plans.

I kind of dropped off the board because my life was very, very busy and I am able to control my POTS now, 99 percent of the time.

I have a wondeful 1 1/2 year old, little boy that is my biggest life change :) I had the worst pregnancy, unbelievable in fact.

I hope all my old friends are doing better and I have missed you guys.

Steph

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This was a thread started by Ernie in May -

"Hi,

I am not posting much lately because I am keeping busy with a more busy social life.

I will keep reading some post but I will not be around much.

Have a nice summer."

I am assuming she is feeling better and enjoying herself!

Angela

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What a sweetheart you are for starting this post. I have just recently made a comeback to posting and have noticed that some frequent post-ers are missing. My thoughts and prayers are with them that they are doing well and not so debilitated that they can't make it on-line.

~ Broken_Shell :)

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Hi everyone...its Laura.

I haven't been on in a while, I have actually been feeling alot better. The 9th med Florinef is seeming to work wonders. I am back to work full time and trying to get a part time job also... life is normal with only a few life adjustments but not many. Mostly just gatorade every day and lots of water too. I was out on short term for almost 6 months when this med started working. So now Thank GOD this single mom is back to work and able to support!

I know there is a chance of relapse, and I dread this everyday! But I keep pushing through and trying my hardest to take care of myself so that it doesn't happen. I have dropped a bit of weight, which for me is a good thing, 25lbs in a few months. I think it can stop now though. :) I cant keep up with buying clothes for work! lol

I just want everyone to know that I believe that everything happens for a reason....I believe that I had gotten this illness for a reason at the time I did for a very specific reason that makes perfect sense to me now. At the time I questioned Why Me everyday....but I can say it has made me a stronger person and closer to my family in every way possible. There is a silver lining in every situation. Even one that seems to be as bad as this one does at times.

I will try to check in more often.....

take care to all!

Laura

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