sorry to be away so long...

[DancingLight]

hello all!

i feel kind of silly posting this...but i wanted i just wanted to check in with you all...

i have not been posting for a few days...and i got a few folks a bit worried! so, thank you, thank you, thank you, for thinking about me...it meant so much.

i don't know what my problem was/is...i started to feel like i was spending so many energy points here and letting everything else pile up. so, i thought maybe i needed to plug some points in to other stuff that needs to get done. then, the longer i was away from here, the worse i felt about leaving so many posts unresponded to! i think i just made it worse for myself.

does this make any sense?

i feel badly missing out on so much...you have all been in my thoughts so much and even though i haven't been posting i have been reading some stuff...

so here's a little synopsis if i don't get to a post of yours! i know i have missed ernie's four year anniversary, nina passing her comps, morgan's tough time, corina's neuro-psych test, nicole's improvments, angela's move, stacey's stress with her family, briarrose's horrible doctor's experience, lots of great links for merrill on the connection b/w POTS and cervical issues (which i printed! thanks nina!), calypso promising us she would go to the doctor one last time , tearose keeping us on our toes and teaching us about shamas night, ramankatesh (oops, sp?) and those horrible tremors, julie forgetting her drive home., danish's long q-t dianosis, geneva, gayle, opus and moving back HOME...

all of these events have been in my thoughts and i want you to know that i was there with you in spirit even if i didn't post. i'll never catch up on all of the posts! if i missed someone...i'm very sorry. i have to go by memory here! not a good thing!

i don't know why i needed to post this...just needed a little encouragement i guess. thanks for listening.

i just have so little energy and feel so overwhelmed. i find that it is very, very, very difficult to find balance and to choose how to spend my energy. you would think that after this many years i would have this figured out! good grief! does anyone else struggle with this? tearose...i need to find a way to get rid of my junk too! that is a lot of what i have been doing this week. realizing that all my stuff piling up is taking up too much emotional energy. so, i thought, okay, if i take some time and use my energy to pick up a little and sort through piles i will feel better. but, i just missed it here too much!

well, i am really not sure of the point to this post...just wanted to say thank you so much to those of you who let me know that i was missed. it meant a lot. i have been having one of those 'but, i don't work' crises....does anyone else have those? just so much i want to do and a body that won't go! grrrr...

sorry for the downer post. i know i am usually counted on for funnies and smiles! sorry...needed a vent tonight. don't know why. nothing a good night's sleep can't fix. please, please, asher don't puke at 2:30 in the morning tonight and keep me up all night! there, how's that for a little humor?

well, alligators! it is time to hit the hay. thanks for letting me vent. i know there are so many new topics to keep up with...sorry to add another one!

thanks for listening...this site is such a blessing i can't believe i stayed away from such a blessing? what was i thinking???

emily

[Merrill]

Emily, you're such a dear dear person ... Your posts are never downers (even if you think they are) ... and even if they were, we're all here to boost you up. Thanks for writing tonight--I know it took a lot for you to get on here and check with us all ... and reading the paragraph synopsis of what's been going on w/all of us was quite moving, really. We are indeed a family of sorts--and it's gratifying in a way I never expected or imagined. I've also been unable lately to fully keep up or respond to everyone's posts in the way I've wanted to...and it's frustrating. Things have taken a turn toward the extremely busy at work, and daytime posting may be a thing of the past. And other life stuff comes into play in the evening, so time only for a quick check-in. It's hard--you feel like you're ignoring some important people and issues... I guess I'll take this moment to say to everyone that you too are in my heart and on my mind--even when I don't respond to a query or post for help or advice. Sometimes I just don't know what I can offer... I'm rambling now--I took an experimental 1/4 of a .5 mg xanax tonight as a pre-MRI experiment and I'm feeling fairly relaxed--so much so that I haven't even the interest in doing the math on that dosage!

I hope you and Asher both have a quiet night tonight ... and that you did, in fact, make it through some piles over the last few days. I hear mine calling now...

Take care,

Merrill

[MightyMouse]

Emily, I'm with you on the overwhelmed thing! I've been trying to keep up with everyone's posts, but I find that I'm running a bit on empty these days, so my replies are less frequent, and untypically BRIEF. I'm not usually short on words (maybe it's to make up for my lack of height?)

This should cheer you up though... your bracelets went out this morning's mail. You should have them within the next 3 days (by Saturday).

Nina

[DancingLight]

oh my! thank you thank you thank you. you both summed up my feelings so well and really reassured me about things. just good to know we are not alone in this. nina...i hear you on brevity...that is not one of my typical characteristics either! maybe that is why i get even more overwhelmed...b/c i can't just be brief! i think you've been doing a good job though! merrill...wow, thanks for those beautiful words! you have such a way with words! and hip hip hooray for those bracelets on the way!

i know i will rest easier tonight just b/c of your kind words. okay, getting all teary-eyed and mushy!

emily

[danish]

Emily,

Thanks for your post. When I first posted you (and everyone else) were so welcoming. I'd been feeling very alone about this, so I really appreciated that all of you were so sweet to me. From what I've read, everything you write is not only informative but reassuring too. I'm in the process of joining dyna kids, but for now this is all I have in terms of support. You deserve some time for yourself; you've done so much for people here.

But SERIOUSLY, I don't know if you realize how much one post, just a few lines of encouraging words, can mean to someone. I hope that you stop feeling so alone and that you (and your cat) have a good night.

From a fellow Pennsylvanian,

Sarina

[Ernie]

Hi,

I have that feeling also that I am not doing enough for the group or that I am not doing my share. Intellectually I know that I am doing my best. I am no doctor and many of the posts are about medical questions so I don't have a clue about what to say. Another problem is that I live in another country so I don't have the same jurisdiction. So most of the time I answer questions about TTTs or to encourage others (I hope that's the result people get!!!).

This group is like my family and I cannot go a day without checking in. But I don't always have the energy to answer or the knowledge to do so.

I tell myself that we cannot always be giving and receiving equally (ie 50/50). We have our bad days and good days and we do our best with it. We have such a nice support system here, where when one feels bad the others are there for support, and eventually we get each our turn to help or to receive. We cannot each one individually always be there 100% of the time for the group but the group is there 100% for each one of us.

That's my philisophy!

Ernie

[geneva]

Emily,

I am glad you took the time to check in. It sure is hard when you are feeling overwhelmed to post isn't it? But know that your absence IS noticed. And you are entitled to a day without being the funny one, although we love your sense of humor! The holidays and the family related events, not to mention the change in weather seem enough alone to exhaust my energy points these days!! You are smart to guard yours closely.

Merrill,

sorry to hear things are getting busier for you but maybe that will keep your mind off the upcoming test and results. That is great that you did OK with the Xanax and how smart to try it in advance of your MRI. I forget but when is your test? Good luck!

Might Mouse,

I honestly don't know how you are still on your feet! When do you leave for your well deserved vacation? I have heard from others that the place you are going is wonderful....do send us that post card, OK?

good nite all

[Merrill]

Geneva, my MRI is Saturday afternoon--thanks for asking. (At the moment I'm more worried about the treatment afterward than about the test!) Funny thing--I can't exactly tell if I'm actually feeling a little loopier and relaxed or if I'm just pretending because I know I took something! I know that's goofy ... I even drank caffeinated tea at dinner just to get me "going" a bit ... Plus my hubby's been at his company xmas party, so I tried to worry about the fact that he wasn't home and unreachable on cell phone the way I usually do ... but it just didn't faze me too much! I'll try 1/2 pill tomorrow night, though I risk not getting any presents wrapped and in the mail if I get too complacent! I am WAY off topic now! Sorry, Em.

G'night, all.

m

[morgan617]

Emily, I just think this is hard time of year for a lot of us. I'm not sure why. As you well know I've been nothing but a whiner on here lately, so better to just stay away until things get sorted in my brain. The good thing is I can type even if I go deaf, so won't lose my present wonderful company! All my friends here. I got my bracelets. I ordered three and my hubby wears one for me. Everyone at work asked him about it. So i should send the cards so he can pass them out to people.... Everyone on here is kind and sweet. It is the best site! Em, WHAT are you spoiling Asher with that he feels he must puke on the floor? My cat puked right by my face about a week ago! If I had moved an inch, grooos.. Worse than kids... take care of yourself and just give yourself a break. we love ya! morgan

[Melach]

Emily,

I very much appreciate what you are saying; I also often just get too overwhelmed. It's incredibly difficult to balance time, and I doubt that anybody ever really learns the art. When I begin to divest a lot of my already sparse energy into any one thing, I always begin to question myself. I can tell that you're very much loved here, but occasional (when needed!) breaks won't hurt anyone. I also often get the EXACT same

just so much i want to do and a body that won't go! grrrr...

<{POST_SNAPBACK}>

feeling. My brain sometimes feels like it's in a different place than the rest of my body, and it's difficult. Luckily, this is the perfect place to express those feelings. Don't apologize for venting! I wish that I'd had a little more "been there, done that" people to vent to these past years. Again, I understand everything that you're saying, and hope better days (in every possible way) follow.

B'Ahavah,

Ayelet

[corina]

Hi Emily,

glad your back and hope your doing a little better and have sortened out some stuff!! I don't know whether it's the time of year, or maybe the party you had (felt great and then suddenly come to the conclusion that you're so different from all your old schoolfriends in not being able to follow them). Whatever it is, it doesn't matter. We're glad you're back but maybe you're right and you also have to take some time to sort out other things.

I think we all are glad you wrote this topic, because don't forget: WE'RE HERE TO HELP EACHOTHER!!! And knowing that you're the one with all the funny things (you always make me laugh or at least smile) we're here in bad times as well. So alligator, I've got to hit the hay (I don't exactly know what that means, thought it might sound nice ),

Corina

PS I thought Asher is a dog instead of of a cat???????

[calypso]

Emily,

You should never, ever, EVER feel guilty about not catching up on posts, not posting at all, etc., etc. We are here to support each other when we feel we are fit and able to -- and if we aren't, we should be resting and getting our strength back. This rule should certainly apply to you, too -- although I sure look forward to hearing your thoughts or jokes to cheer me up!

As they say, there's no rest for the weary.

Amy

[MightyMouse]

Merrill, you should take xanax more often you're funny on that stuff. Gave me a good giggle. Nina

[danish]

I just reread my post from last night. In case you misunderstood I wasn't trying to pressure you to post more or when you can't. I just wanted to say that what you've already said has meant a lot.

Sarina

[Nicole's Mom]

Emily,

I think you are such a sweet, caring gal. You always reach out with such kindness. And humor too. But sometimes even sweet, caring gals who reach out with kindness and humor have the right to feel overwhelmed and yes even have the right (and/ or need) to step back, to rest, evaluate, find balance, figure things out, replenish and/ or just be one with oneself.

Anyway- don't want to tire you out- and make you read a lot of stuff- just want to send good thoughts your way.

Beverly

[Guest tearose]

emily? emily who? Do I know anybody named emily?

[Guest tearose]

gotcha! Hi Emily, I'm glad your back. I knew you'ld come to your senses! I'm taking it easy cause I got sick I'm so sick even my dear h is grumpy....more when I can think and breathe and write again... hugs, tearose

[DancingLight]

tearose...how who's the smary pants?

melach...you are one of the people i slipped up mentioning in my post...so sorry...i want to officially welcome you! i love that this site reaches around the world! i have really enjoyed all of your posts so far...

beverly, calypso, geneva, ernie, merrill, nina, melach, sarina, geneva...uh-oh who did i miss this time? thank you. sarina...i did not take your post as pressure at all. in fact, your post was so great it moved me to tears to know that i can make a difference with one post. you are right though. these posts to me made my day so bright.

thank you everyone for your kind words and for capturing how i am feeling so well...and for being so understanding. i do just feel a little bit 'on empty' right now. and i think also, this time of year is so hard...like tearose and the rest of you who responded to her post...it is so hard to not be able to do stuff.

i'm looking forward to visitors but also dreading the recovery. i think corina...usually i am pretty insightful and perceptive...but this time i didn't step back and really see the effect of the reunion on me. it's like suddenly people expect me to be able to do that much again right away. and it just took everything out of me. and also, you are right about it being such a reminder of where i am with this illness. grrrr....

i'm tired of being a medical mystery! at my reunion...when people asked 'what do you do?' i thought maybe i would say, 'i'm in medical research!' i just wouldn't tell them i am the subject! ha!

still a little 'flat' today...it must be 'in the air' huh? glad we can all be here together to commiserate.

corina...that later alligator, hit the hay line was too funny! oh, 'hit the hay' means to 'go to bed.' i'll leave it to nina or merrill to find the origins of that term. he-he. just kidding you two!

later alligator...that is just another goofy saying. it goes 'later alligator' and the other person says, 'after while crocodile,' as a 'goodbye, see you soon' type of thing. i taught that to my little japanese neighbors...it was so cute that i got them saying that. then, when the moved back to japan they wrote me letters with that on them. so cute!

okay, so this is definitely off topic. good luck with that mri tomorrow merrill.

does anyone else feel MORE lonely this time of year? b/c everyone else is so crazy busy? my parents are immersed in grading and my friends are traveling, finishing up semesters, etc. i can't get a hold of anyone! it just makes me feel more left out of the world.

oh man, i have gone way too far on this vent. we are all overwhelmed with posts as it is...

i just needed to jabber. thanks!!!

IF YOU DON'T READ ANY OF THE REST OF THIS POST: PLEASE READ THIS!!! YOUR WORDS TOUCHED ME SO MUCH. THANK YOU FOR GIVING YOUR PRECIOUS ENERGY POINTS TO ME AND FOR UNDERSTANDING!

later alligators! (hey, we are in the swamp of potsholes some of us, aren't we?)

emily