DancingLight

yeah!

good news!

i just got a u.s. news and world report in the mail today and was flippin through it (too much brain fog to actually read...but hey!)

and...there was an article on bracelets like dinet is making and how trendy and popular they are...

it made me smile...

and think...hey, we are in vogue!!!

emily

boy, that played out like one heck of a good therapy session! wow! i loved it!

it was so great to see the whole process unfold...the pros and cons from everyone and then, futurehope, you making the final decision...the one that is right for you!

yeah! i love what everyone has said on this post and so much of it rings true for me too...

that sort of decision and process is something i feel like i go through day in and day out...and it was really great to process something like that as a group...and see how others feel while making these decisions. EM...love the quote you put up. i have to write that down!

FH...you go! i commend you are TAKING CARE OF YOURSELF....

maybe the queit weekend can turn into a big treat (i.e. doing only what you want to do!)

okay, battery is about to go on computer here....oops....

thanks for sharing your dilemna and decision making process...it helped me to see that we all go through this in much the same ways!

i'm so sleepy, i must not be making any sense...sorry...

emily

just wanted to say....

welcome!!!!

glad that you found this board....it is such a great place for support and information and just to check in and know you are not alone.

i don't have any new tips either...other folks said it all...

but...you can never have too many "welcomes," right?

emily

nina,

thank you so much for taking the time to post that and clear things up for me, and hopefully for others too.

this is a complicated issue! i had noticed recently on both ndrf and potsplace discussions that sometimes there was a lot of hostility towards another member or unkind comments made.

each time we post, we must remember the human being on the other end who will be reading what we write...

when in doubt, use kindness, and if you don't have something that you can express in a tactful way, then don't say it! i guess that is how i feel...

information is here to be shared...if you don't agree with something that is okay. but if we post in ways that are hostile to a person we don't necessarily agree with, we only make people more fearful of posting and lose the openess and positive flow of energyon this forum. Most importantly, people may end up withholding information that could potentially be helpful to someone else.

these boards are often on of the only safe places some folks have to go. it breaks my heart when something shatters that trust or support. (i went to a college that had a foundation in the Honor Code...meaning self-scheduled finals, take home tests, leaving your backpacks lying around, dorm rooms unlocked...etc...so...i try to use that system here...never betraying another member of the forum!)

you and michelle are amazing in your efforts to creat a community of members who support and hold one another up through our struggles with dysautonomia...and for that i commend you. you have created an amazing, warm setting that has made me feel very safe. and a group of members who amaze me every day...thank you for giving us this gift of community!

thanks again nina for your post.

emily

p.s. i hope this even makes a bit of sense...my brain fog is soooo bad during these flare ups i am having! eek!

futurehope!!!

i hear you! just thinking about all of the logistics of an event like that sends me reeling too. it is hard too when you don't feel "safe" with the people who will be with you...meaning, they don't quite "get" what your needs are.

i am at the age of weddings and babies...and have missed all of my close friends' weddings...and it breaks my heart. but they completely understand. they live all over the country and i haven't been well enough to travel to visit anyone since college graduation six years ago.

that being said, i know i made the right decisions in not going or trying...but it is so hard. my grandmother is going to be ninety and i keep thinking i should bust my butt no matter the cost to go and see her, but i just don't know...

sorry...i got off subject...it's just that i really hear your pain and frustration...

and you are really beating yourself up...i just wanted to say no, you are not the only one that debiliated by this. no, it is not b/c you aren't trying hard enough. no, you are not alone. and no, you are not the only one whose family sometimes doesn't quite get it! i could not make a trip like that right now. just the thought of the bus or that long of a day or any of it! i am pretty much homebound and i know that there are many others that way...and it isn't b/c we don't long to do "real" and "normal" things.

obviously...you are the best judge of how important it is that you be at your neice's wedding and if it is worth the costs/benefits. ernie had some good suggestions. keep us posted on how it all goes. i just wanted to send some good thoughts your way and let you know that you are not alone....

emily

that is really interesting!

i was the same with running as many of you...i would get side aches...and when i pushed it to run "the mile" for the presidential fitness award...well, i puked at the end.

my dad sooo wanted me to be more into sports...

i needed a LOT of sleep always too...but i managed to get through college until it hit like a brick wall....

but my endurance was definitely never that of my friends!

emily

yeah! i am so grateful to hear from you and know you are okay...i was watching the news last night too...thinking...oh it missed tampa...i hope jessica is okay! still, i cannot imagine, as you said, all the other folks enduring its effects.

emily

julie,

thank you for posting that.

it is freaky!

but, michelle is right...if we stop posting and sharing, they win. we just have to be careful...i am always so worried about saying the wrong thing on here...esp. b/c with email you can't always tell tone of voice, etc.

what do you all mean that information has be misused a lot lately on the board? i am confused?

thanks, emily

hello and welcome!

are you taking effexor xr or just effexor?

wanted to clarify, b/c there is actually a big difference b/w the two. effexor (not xr) is a much older drug and worse side effects (i couldn't tolerate it at all)

however, the xr i can tolerate. it sounds like you are having pretty extreme side effects pretty quickly and at a really low dose...

i started at 12.5 mg and gradually tapered off. i take 75 mg now. i cannot tolerate more than that or i feel agitated and can't sleep too.

is effexor the only drug you are taking? is there a reason you chose this particular med?

i like it a lot and have tried a zillion anti-depressants...but it doesn't help with a lot

of the symptoms you are describing...at least for me!

i guess of course we aren't medical doctors here...and you have to decide how extreme the side effects are and if you can wait them out. sometimes they get better sometimes they don't. it can take several weeks for the side effects of anti-depressants to subside.

i did have a lot more nausea especially when starting the effexor and that did go away. but it didn't with other ones i tired....i.e. zoloft i felt so agitated and couldn't sleep...and that never wore off even after a couple of months.

i definitely wouldn't increase the effexor at all untile you can at least tolearte the amount you are taking. sometimes a subclinical dose is enough for us folks.

keep us posted...hope you find some relief soon...

emily

jessica,

i would be freaking out too! i freak out about lightening and thunder or tornado warnings!

i really do hope that you survive the power outtage...that would be really tough with how hot it is down there.

unicornisis sounds like a pro on this topic...i don't have any other tips!

we lost power in a thunderstorm just for a couple of hours the other day, and i was in a major flare, and kept thinking...wait a minute...there is nothing i can do/use that i use constantly during the day...it was pathetic when i realized how dependent i was on power.

anyway, please post again as soon as you can and let us know that you are okay...until then, i will keep you in my thoughts!

emily

you all are so computer savvy! i didn't even know there WERE survey sites out there. that is great. sorry you had to do it over nina...but thanks! emily

jessica,

thanks for posting this topic....i am now seeing i have a lot more rights than realized...and i am sorry you are going through such a mess. i encounter such resistence every time i try to get records, that i don't stick to it. i don't understand why they won't give them or give you such a hard time...over and over again.

from all of the posts on this topic, it seems that this is not an isolated problem!

for those of you who write a letter...do you have some standard letter that you would mind sharing...i.e. do you put in that you know you have a right to your complete medical records? do you mention HIPPA, etc.? i am just wondering b/c some of you are having better success than i am.

i guess i don't understand why it is such a fight...most of the time the records i get are clearly incomplete...so then what? i specifically asked a cardiologists office for my complete records b/c he had referred me somewhere else...and she gave me such a hard time b/c there were so many pages in my file (something like 10 pages! good grief.

i find evern after making it clear that i want my complete record they act hostile and aggravated...even though it is their job.

just wondering if someone had a letter with the vital info set up in a way that they feel gets the job done! (i won't copy word for word or plagarize...just use it as an example!)

i guess the thing tha tbugs me the most is that it's not like we have all sorts of extra time and energy to spend on this stuff...nor do we need the stress.

oh, and how do you find out who the medical examiner is? just curious.

i am a little clueless on some of this stuff.

jessica..i am sorry your post brought up some forum issues...but i wanted you to know, that we do know you have a heart of gold.

emily/emilydg/dancinglight

Yeah! My first post on this site!

I have been lurking for soooo long...finally i am posting...

I LOVE THIS IDEA!

and i can't stop my mind from trying to think up ideas too. so much fun. a great way to raise awareness too...

so I LOVE all of the ideas so far...great quotes, great words, everything. my all time favorite is the hillel quote! wow! love it!

so here are just a few more ideas to throw in to the pot...

when i think of my favorite words many overlap those suggested so far...they are...

FAITH. HOPE. TRUST. LOVE. SPIRIT. LIGHT. DANCING. SURRENDER.

one word that i like a lot....is BREATHE...i feel like wheni am having a really bad day, i literally have to remind myself to breathe b/c i tighten up so much and try to "run away" and escape how bad i am feeling. but really i need to breathe, and accept that "it is what it is." also, on a good day or a bad day, it is easy to forget to take in the MOMENT and be GRATEFUL for what is. even if it is the blue sky. i have to tell myself to BREATHE. and this brings me back in to the MOMENT.

PLUS, MY MOTTO IS DEFINITELY TO TAKE THINGS ONE DAY AT A TIME. not to live in the past or the future, but today.

other quotes i like, but too long for bracelelt...

swahili wisdom...

slowly, slowly, that is the way. quickly quickly, it gets you nowhere.

OKAY, my other big idea is something that would be to get people curious and asking questions about the bracelet.

i love words like hope, etc. but they are kind of trendy and people may not take notice of them...which is fine, if we what the bracelet for our own daily inspiriation.

but if we want people to ask about it...it would be cool, since DINET is supporting it and b/c this is where the idea grew and flourished...

what if we could think of a cool ACRONYM for DINET? or a name for ourselves like gilda's club. we could be a DINET dancer or a DINET (you fill inthe blank.) then, on the one side it oculd just say DINET or DINET dancer and people would say, what's DINET? or what's a DINET dancer? then, voila, you have an opportunity to fill them in...and they know how to spell dinet and jujst maybe they will check it out on the web. remember, knowledge is power and we must spread the word!

then, on the otherside, the words for dinet. i don't have good ones yet, but i will throw something out there to start the wheels turning...

Determination, Inspiration, Never (say never), Endurance, Trust (in a better tomorrow).

So, we can create awareness AND help ourselves get through the day all at the same time!

oh, and just seeing the word DINET on a bracelet, would cheer me up. It would be a warm-fuzzy, b/c this is a place of so much warmth, support and understanding. you know? it would automatically cheer me. plus, since DINET is the one supporting this idea and making in come to fruition, i think it should be onthe bracelet.

okay, those are my thoughts!!!! hope it helps! this is going to be so great! way to go stacey.

DancingSpirit (emilydg from ndrf!!!)