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Peeking out from my papers...


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hi all -

other than my posting spurt today i've been pretty quiet as of late so thought i'd jot a quick (haha) note to everyone collectively. i've felt bad for not posting much these past few weeks and now i feel bad for posting too much today as i really should have been writing papers for school instead. can't win, eh?

i've established that getting truly caught up with replying to posts isn't going to happen. i read everything and there have been so many that i've wanted to respond to but i'm having to do everything i can right now to make it through these last few weeks of school. so to all of you who i've wanted to give hugs or congrats or welcomes to and haven't, take whatever it is i've missed and should have sent your way, k?

there are so many that have been posting about struggling emotionally, issues with family members, docs, med changes, etc. etc. and i can say "yep, i'm right there with you" to so much of it. sparing the details my body is as whacky as ever these days in spite of several med changes, working on my conditioning, etc. emotionally thanksgiving just about did me in as i really couldn't handle the comments of "just try to get better" and "you look great" and the like. it's not something new but i think it's just sort of catching up with me after the roughness of this past year. i'm in better shape than i was in terms of having some docs here in cleveland but not where i need to be. there is still just so much disconnect and i know there are better options for how some things are being dealt with at the moment (i.e. my being sent to the ER for fluids...it was such a fiasco and i KNOW there are other ways of getting IVs but my docs are dragging their feet....times ten).

anyhoo....this turned into a bit of a vent. lucky for all of you it was a short one (in sunfish terms that is), but a vent none the less. oops B)

one good thing to report on...i was asked to be on a disability panel for a class (that just happened to be one of mine...complete coincidence as the prof asked the disability coordinator for the university to put together a panel & she asked me not knowing it was my class) so was able to give a quick snippet on dysautonomia to a room full of social-workers-to-be. i'm always glad to bring awareness in any way possible so thought i'd share that good note in the midst of my other craziness. and even better as i didn't know if i'd be able to get there at all....had a few of my worst days BP wise in ages the few days prior.

but i digress...

bottom line is that i probably will be pretty quiet on the board for the next few weeks until things are wrapped up school wise...only about 70 pages to go :)

i'll be around of course but must MAKE myself use my typing energy for paper writing. (if you see me posting too much feel free to yell at me :huh: )

B) melissa

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god bless you girl!! I'm just in total awe that you still plug away despite how sick you have been!!( i know how rough it is and can be!! ) You are an inspiration to me and other i am sure..

take the time you need to do what you gotta do.. and that is great about the disabiltiy panel.. very cool!

Stock up on the salty things.. and gatorade.. and stuff....

Just wanted to say I hope that you feel better soon!! and that you can get some help from "you know who "with the IV's--if you have luck with that let me know!! I will be truly surpirsed considering feeling on that!! :huh:

hang in there girl B):)


Edited by dizzygirl
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Good luck with school seems like you have alot on your plate! Is this your last year?? <---I'm sure why that posted 8 milion times tho!!!!!! I am trying to get into some online classes for accounting...hey since I am sitting home alot these days might as well do something productive right!!! I want to go to RN school but the way I am feeling who knows when if ever I can do that. I hope you are feeling okay and I can completely relate with you about the whole family thing... one of my old friends started saying that there is nothing wrong with me, etc. I don't wish this upon anyone but sometimes I wish for one day ppl could experience what we have to deal with EVERY day. I know there are alot of ppl worse off than me esp. on this board. I have no idea how everyone does it.....sorry I went off track! Good Luck with school, but I don't think you really need it, you seem to be doing great! Take Care.

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thanks gals...


the IVs aren't going to happen from that end. b/c honestly i don't want to take that next step re: a port at this point either. essentially i need my docs in cleveland to get with it in that regard b/c dr. grubb is all for me having them intermittantly, aka when i have GI flare ups &/or super low BP/high HR that i can't quell with fluids/salt/meds, but he can't initiate it long-distance. so now it's on the cleveland doc's plate. i'm waiting for dr. grubb on the procrit though....he says it's a go but hasn't told that to my local docs yet which means nothing can happen. ggggggrrrrrrrrr.

jacquie -

i WISH i was at the end but just the opposite....this is just my first semester (of grad school) so i've got a long ways to go. don't get me wrong...i like the program itself...it's just that my body doesn't always agree.

normally it's a two year program (full-time) but since my body won't cooperate with being upright enough for that i'm doing it part time so if things go swimmingly health-wise (er...better than they are these days) i could finish in three years but realistically it could be four or five. geesh that sounds like a long time.

that's awesome that you're looking into school yourself. it's been good, albeit super hard, to get back into something after not being able to work/school for a good spell last year. and yep, it can be tough to realize what is/isn't realistic health wise. nursing is super tough in terms of having to be on your feet a lot...i know there's no way i could do it physically. i knew a while back that there's no way i could physically do med school...my body just couldn't. and while i tried to start out my current program full time - i suppose i had to try to know that it wasn't doable - it was/is a program with more flexibility than med school.

good luck with your decision(s).

thanks again gals,

:huh: melissa

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Just do what you can on the forum and focus on those things that you need to do to:

be your healthiest


get through school!

We'll still be here. I feel for you, by the way. I am procrastinating. I have 3 papers due this week. I have 10 pages done on one, and 10 pages on another...and nothing at all on the third. All need to be about 25+ pages before references.


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Guest Belinda

Sunfish-I just want to thank you for replying to my post. And I look forward to a group around here.

Good Luck with school, it gives me hope that I will get things sorted out. Much Thanks!Belinda

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Ah, the crunch between Thanksgiving and X-mas, I remember well. I used to make it through on caffeine and junk food. Thank goodness I didn't have POTS back then, because both of those things are banned from my list these days! B)

As for the "You look great" comments, I just got my wonderful DINET brochures which I am going to leave on my desk at work. I am sure they will generate some interest. Hopefully we will be able to purchase some in the future, because I need to hand them out to just about everyone I know... :P

And as my mom would say, school comes first, don't worry about anything else! Take good care of yourself - make sure to eat well, drink plenty and get enough rest. Good luck with the rest of your semester. We are all cheering you on!


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Thanksgiving sure did me in...so, I'm extra quiet too...(and hey, we're usually the blabbery ones, eh?! I think you're already close to me in posts girl! :P)

Okay, trying for a smile...

I'm going back under the covers for a few days! I'll send you homework batteries for those seventy pages!

UGH!!! (oooh, ugh and hug have the same letters!)

Okay, I'm beyond weird...I'm sorry things are soooo rough for you and I am sorry I haven't had any energy to be there for you and talk...B)

I don't have school work as an excuse for my quiet...just a body that won't cooperate...sound familiar???? But, Nina's right...we're all here and will be whenever you are up to being online. We both must learn a way to not feel guilty for not replying to posts...it nags at me and I write answers while I am lying there too sick to type or do anything (most of the time!). So, in essence, I've written a book! :( But, it's all in my head. When you figure out how not to feel guilty let me know???? :)

I'm sorry Thanksgiving and time with family was so hard. I had a hard time too...I tried to have visitors and now I am just sicker than I was before. I had that HAPPY stuff makes me sicker too. It's so maddening.

I gotta go to bed...Sending HUGS and UGHS! :)

Love, emily

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Ditto to all the above. Take care of yourself and don't worry about the forum. We appreciate you so much and miss you when you're gone, but we also understand that you need to take care of yourself.


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thanks for all the support guys (er...gals).

slowly but surely pluggin along & hoping that my body won't completely flip out in the meantime. my GP is raring its head at a not so opportune time. and how it is that i was just started on a stimulant 2 weeks ago yet am more fatigued/weak that i have been in ages is, well, uniquely me. uh, yeah. may have something to do with all the wacky bloodwork i just got back today but that's another story...hoping to talk to the doc on that mess tomorrow...

thanks again,

:P melissa

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Just wanted to cheer you on. You are quite the inspiration to many of us.

Thanks for all of your efforts on the board!


p.s. Keep typing! You can do it!

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I have wanted to do an online Librarian Masters Degree for years but just don't have the energy. I have one at univ and a senior in HS so don't know How I could swing it $ right now anyway, so I'll just root for you and like most things , they get done. good luck!:-)

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