Major Reality Check

[cnm1]

Melissa

I am sorry it has been so hard for you. I know your mind understands that it is ok to go slower but your heart is still broken by it. I am watching Rachel struggle with her on line classes and can barely control the anxiety attack I feel coming. I just want her ( and all of you) to have a chance to follow their dreams. OK, now I'm crying. If it make you feel better I didn't get my masters until I was 40 and I didn't have a dysautonomia. I wish my life could have been easier and I could have done more when I was younger but it was what it was. At 46, I bought my 1st house. THere are lots of things that slow people down but just try to keep moving forward. THe time will pass anyway - you might as well be headed in the right direction. I live nearby - if you need a Tommy's delivery of a emergency milkshake let me know . I hate these illnesses I HATE THEM I HATE THEM. I think I going to get myself a milkshake. PMS and a sick kid are getting me down too.

Louise

[Sunfish]

thank you thank you thank you all for all of your posts. i don't even know how to tell you all how much they all mean to me.

one thing - i was definitely not attempting 25 hours of coursework...i was just calculating the number of hours that i would have to be upright for my coursework & fieldwork/internship that totalled the standard courseload of 15 credit hours. i know that's just logistics, but as nutty as i may be i wasn't trying to overdo things THAT horribly! sorry to confuse things...

i had to get IVs yesterday as my gastroparesis/nausea/vomiting decided to have one of their flare-ups the past few days (happens about once a month for me) so my ice cream craving declined but today everything stayed down so that's a good thing.

louise, i may have to take you up on that milkshake offer sometime though. or at least let my mom know that i have a cleveland back-up that could get to me quicker than my parents; it would probably make her feel better! i hope you got your milkshake....as hard as this stuff is to deal with personally, i can imagine how tough it must be to watch rachel struggle. it's a different hard, but hard all the same...

kristen, sorry i haven't been in touch. i would definitely love to have you come hang out sometime but couldn't hack it this weekend. i was so wiped emotionally & then my stomach went wacky too (which i tried to correlate at first but who knows...i tend to get a gastroparesis flare-up every month or so anyway so i was due...) i spent 3 hours NOT getting IVs on saturday (gggggrrrrrrr) and then several hours getting them on sunday & - don't laugh - i wouldn't have had any place in my apartment for us both to lay down at the same time (other than the floor)! my couch is coming next weekend so then we'll have to set up a date, k?

i had gotten myself a bit more grounded over the weekend but knew that starting the week would be tough b/c of having to finalize all of my schedule changes. i had to tell my field (internship) supervisor this morning which was super tough but i survived & he was a nice as could be. then i had to do the official add/drop & financial aid stuff. and then went to let my fave prof know (instead of just disappearing) that i was having to cut back & thus cut her class. she had already graded my paper & said my writing was great which was both good & hard to hear (since the class is no more for me) but overall was really supportive. everyone at school has been, which makes the situation as good as it could be. so most of the technicalities are taken care of now but i'll still have to give the scoop to my classmates as i'll be "disappearing" from some classes/seminars and am not shy (surprise surprise eh? ) in class so it'll be noticed. i guess eventually i'll get used to it - i'm already getting better - but every time i have to give the scoop it's a reminder of sorts that is still hard to hear myself say/acknowledge.

so...thanks again...for all the words, thoughts, hugs, smiles, sunshine, fuzzy slippers, & ice cream. i really don't know what i would do without you all!

melissa

[MightyMouse]

Melissa, I hope you're able to pull off continuing with school. You and I can keep cheering each other through this rough bit.

Oh, and if you're getting a Cleveland connection, could ya have them stop by Malley's for me and get some pecan billy bobs? and some almond billy bobs? and why not make it a trifecta...cashew billy bobs too please.

Uh, can you tell I have PMS and a major chocolate craving going on???

Hang in there my little fishy friend. No floating in the bowl is allowed.

Nina

[wareagle]

Hey Melissa..you've gotten a lot of great responses so I'll be brief! I just wanted to say I understand what you're going through..I actually made it outa' college and grad school..and got to work for a little over a year before this illness hit me over the head. I tried to continue working (I was a Speech Path.) after I became ill..at that time the docs. thought it was EBV and that I'd get better..I made it a week and a half into a new job at the hospital I'd done my internship at and I could do no more...my supervisor and peers were so supportive and initially wouldn't let me go..I'll never forget the day I typed my letter of resignation..I cried the whole time..I felt like I'd given up everything..after all the hard work and commitment to make this my life..it was gone..I felt worthless..at first.

Then after a week or so I felt relief..I still didn't know what was wrong health wise and being able to just REST and do things at my own pace helped. I was able to focus all my energy on getting better..still not there..but it's nice to not have all the added pressure of working. I still hope to work again some day!

So...I think you are FABULOUS darlin' b/c you aren't scared to follow your dreams..and you're not giving up..you're slowing down. I agree with Steph..stay in college as loooong as you can..I did and I loved it!!

[Miriam Poorman-Knox]

Remember "REMARKABLE WOMEN Do REMARKABlE THINGS"!!!!!!![/i have no doubt that you will finish your training, and be a medical social worker. finding the correct balance is the key. And keys come in all shapes and sizes. The best Miriam 25 years to complete my degree at PSU. I had children,jobs etc.....Had not taken so many interesting classes I would have been done much sooner.

[pamela]

Being humorus here... Maybe we should all work at night since we are awake any way. What could we do...? Nighttime babysitting,dog watching...? I know, write a book or 10. Testomonials about our life, "funny thing happened on the way to the flloor. (just an example.

My dad got up around 3am and I was up on the computer organizing my questions for a doc appt today, and he said "You know if you go to sleep maybe you won't be tired." I just agreed and went back to work.

The days that I feel really crummy I think about him. He is my stepfather around 50ish and single. He has severe Rheumatoid Arthritis and some times he can't even grip a coffee cup. Yet after I got had a P.E. in May 03 while my hus was in Iraq. He stayed with me and commuted 35miles to work at 3rd shift, he stayed w/ me 90% of the time when I was pregnant and they redeployed my spouse. He was so supportive. Now he is declining fast and can't always afford the reccomended drugs for his condition. He still comes to visit and help out. Seeing his struggle tuns my heart to mush for his pain and suffering and I feel thank ful for all his effort. He really gives me my reality check.

Love to all,

Pam in NC

[faithinspires]

Melissa,

I know that this must be very frustrating and dissappointing. I have spent the past year and a half trying to increase my level of functioning, so that I can work. I feel the need to do this as I am now a disabled, single mother living on ssi. Several times I thought this was just around the corner for me, only for my hopes to be dashes by my health. I admire your courage and determination. The fact that you started, and that you are still going to proceed at a slower pace gives me hope! I hope to improve my level of functioning enough to be where you are, moving in a positive direction! Take Care!

[AJVDK]

Sorry to here about how things have been going. I want to let you know I understand kind of what you are going though just a different deal. I have worked for a company for the last 4 1/2 years. All I wanted to do was have this reg. Marketing position. I work 4 years for this job. In May even though my health wasn't the best they came to me a offered my deam job. In auguat my health was getting so bad, i found meself not even beable to get to work so I step down and went back to a managers job. I hard to give up my deam to do whats best for my health, Someday I get up and hate myself for giving it up, It hard to see someone else doing the thing that where my job. I know I did the right thing for my health but its still hard to deal with. I am learning to take one day at time, and deal with just today. I am learning to look at the postives, that today I am feeling good, so or the fact I was able to walk a few blocks, or the big one for me is I didn't feel sorry for myself because I can't keep up with other my age. I am learning that is ok to be the way I am. Who knows, maybe some day latter down the line I will be able to try to get the marketing job when my health is better, or maybe thing happen for reasons.

Keep your head up!!!! Things will get better, and we are here for you! You need to do what best for you!!!

Hang in there!!!

Amy

[Rita]

Roomie I am so upset for you and feel your frustartion. Have you talked to Bonnie to see if there is anything they could do to help? I was so totally afraid you would do this , I HAVE ALREADY BEEN THERE AND DONE THAT. I was only trying to go part time though and still end up in the hospital for a week and out of school 2 weeks. I am not sure if you know this but Dr Raj says that stress complicates our problems even more. Please let me know if there is any way I can help.

lylas,

Rita

[persephone]

Melissa! I am with you-- I **know** how devastating it is! I really feel for you. Is it just possible, do you think, that the first few weeks have drained you? Even when I was well, I used to feel knackered by the third week of the term because I had been so excited and crammed so much into the weeks before that. I used to get a real 'slump' in the first bit of my term for that reason.

But I can understand your fears and your being upset- I always worry now that things will spiral out of control, and that I too will end up in "bigger trouble"--I'm facing this worry now with Oxford because in all honesty, they just aren't being very helpful at the University, which makes me really sad. but also more determined to go to prove them wrong!

If you're genuinely ill, htey HAVE to make exceptions and allowances for you!

I don't know if there is anything like this in the states, but yesterday I went for a disabled Students Allowance Assessment that allows me to get all sorts of help. There's going to be someone to push my chair, someone to get books for meor do photocopying for me, and I get a lightweight laptop with special software on it that mean sI can dictate my essays instead of typing- ****, I'll even be able to dictate my posts on POTSPLACE! And it will also let me scan textbooks into 5the computer and read them back to me if I'm too exhausted to read. ALL this stuf fis stuff I'm entitled to, but stuff I never knew existed until NOW! Is it worth having another chat with a Disabilities adviser at the college? I'm sorry if this is something of a ******* question.

I should point out thought the the woman who did my assessment yesterday and was so helpful was not from my niversity- she was from a nearby college and I was astounded at how positive she was- her own daughter is my age and has NCS!It was like a breath of fresh air! and she knew exactly where I was coming from with the fatigue issues etc.

I really hope you can find someone who can help you like this!

Meanwhile, know that we are all behind you, and all here for you, no matter WHAT!

[BallroomA]

I am so so so sorry!! I completly understand you and just had my reality check. As you all know I was recently diagnosed....well I am 19 and a senior in college. I'm so scared I am gonna end up in the hospital again and so gratefull for my fiancee. I'm a Criminal Justice major and my parents are completly convinced that I will go on to be a Federal Agent or Police Officer....whereas I know I CANNOT. Sorry but I am gonna start venting....

Melissa you seem so smart...god I haven't even talked to the disability center cause everybody here says I am fine.....school is so overwhelming I am taking 21 credit hrs, the president of a society that I DO NOT want to be president of, trying to finish off my Ballroom Dance Competition year, and working 30 hrs a week at a job I LOVE its a dance store and the little kids I help there make everything ok. I know I cannot continue on like this but I don't know where to start. My last dance competition is going to be this weekend...while practicing last week I realized that everything is draining me so much I could hardly remember routines, the palpations were flying, my head was spinning. But telling my coach is gonna be so hard. I wish I had your courage to say this is what I have to do but my parents are so gung-ho on school and me finishing on time....nobody believes that I am seriously ill.

Best of luck to you and thank you for helping me realize things to!!!

[Sunfish]

i'm a bit tardy with the reply here...i managed to tear the phone cord for my computer's internet connection a few days ago so i've been having to make do with a super short one that meant i couldn't type while laying down...and i just don't have enough "up" time so i've been reading everything but am just now getting caught up...but i got a new cord so i'm good to go (well, sort of...)

thanks for the continued support. knowing you all are behind me is definitely a big help.

nina, you need to fill me in on malley's!? i am clueless. and will soon be out of the chocolate peanut butter brownies that my aunt sent my way:-) i'm not privy yet to the goodies to be found on the streets of cleveland....

pers, i wish that this was just a beginning of schoolyear issue but after having many school year starts i know it's not. and i've already worked with disability services - both through my school & the university - and getting the help that's there to be gotten. the reality is that i just can't do my the fieldwork/internship b/c i can't be upright long enough; that was the major impetus behind my having to drop down on the schedule. accommadations or not i can't do all i would have needed to do with the amount of upright time i have now.

i'm sorry that so many of you have "been there done that" too but it is always good to have people that "get it". i do have to add though for all of you moms that say you "aren't working"....yes you are!!! having little ones running around is most certainly work...there's no way i could be doing school at all if i had to be taking care of others too. i'm only just barely managing to take care of myself (which my parents will attest to as they make yet another drive to cleveland...)

ballroom, i'm sorry you're having to make the tough choices too right now & that not everyone is behind you...they may come around with time as it took my family awhile...it's a tough thing to realize that things aren't going to be the way you necessarily thought they were going to be in life, career, etc... you do know what you have to do to take care of yourself though, and i know how tough it is to acknowledge, so give yourself credit for that.

ok...i feel like i forgot to respond to someone/something, so i'll apologize in advance. bottom line though is that you are all the best.

melissa

[MightyMouse]

Malley's ....mmmmm.... chocolate (say all that soundling like Homer Simpson, cause that's what I'm doing as I type).

http://secure.malleys.com/mail_order/storelocation.asp

Yum.

[dizzygirl]

Hey Sunfish!!

so sorry that I am late here... but I just read through the entire post.... and I just wanted to say that I think that you are awesome!! I know that this is a very rough time for you to say the least... but you have pulled throuhg it with such determination and pure "STRONG will"

I think that in the long run that you will see that cutting back was the best thing for you...

My old social worker (who i still talk to from time to time) often ( more recently) likes to tell me that "Linda school will always be there no matter what age you get... but what is good is school going to do for you if you arent around (or able) to enjoy it!"

So I just wanted to add my support and encourage ment to you... I hope that you tummy feels better soon too... and yes enjoy those brownies!! they sound devine!!!

MMMMM!! I think that I will go eat a Reese's Peanut Butter Cup now !!!!

HUGS to ya Melissa

[persephone]

Hugs. That is all

[becky]

hey melissa,

sorry to be really late posting this but just wanted to say that you are a real inspiration going back to school i know how difficult it is and i'm only trying to do three hours a day.

just take it slow, like pers said get a disabilities officer (do you guys have them over there?) i have one in college and at my local job centre and although they aren't actually ill and they don't know what it's like to be ill they can at least help with everything that you need to help you get back to where you want to be.

my aunty got me a fridge magnet last year that says, "i am woman, i am invicible, i am tired" she said it reminded her of me it always makes me laugh, it's ok to be ill and tired and upset and to eat your own body weight in ice cream, you'll bounce back up when your body is ready just be patient (god i hate that phrase can't believe i just used it please forgive me!!) you know what i mean though ish right?

anyway hope you are feeling slightly better, and we are all here to talk to when it gets ****.

big hugs and sloppy kisses (my dad does that to make me feel good)

becks x x x

(still having a sugar rush)

[Miriam Poorman-Knox]

Melissa,

True story. It took me 20 years to finish my education. Ihad children, worked......

I got more extensions for work. It went to the board of trustees at Penn State, they allowed my late drops etc.... My point is that some semesters are better and you do what you can. i feel taht ultimately my education was the best available. Not saying to take as long!!!!!!! But not full time all the time. Also took corespondence courses. Thinkin of ya Miriam