These days, why do things have to be so hard?

[edcdancer]

Im 15...and new here ;)
I have been through so much as I am sure everyone else has been too...but nothing seems happy anymore really. Things all got screwed up for me in December 03 to be exact the week before the 14th. My arm started paining badly and so my mom just thought it was the way that i was sleeping on it. I ignored it every morning as it just got worse and then on the 14th i woke up and my arm was HUGE all swollen and purple. My mom took me to my family doctor and he is like go to the hospital right now you have a blood clot and i was so scared. WE spent hours in the hospital and they found the clot, they rushed me over to sick kids hospital and when i got there there was no blood flow to my arm at all and there were "several" clots. Thing oviously werent good. :shrug: Anyways...i was dx with DVT and put on lovenox(needle blood thinners) which i was so scared of. I have re clotted about 3 to 5 times since being on blood thinners and i have a inr thing i do my bloodwork at home so my levels are fine but i just clot all the time. At this point im pissed at sick kids because they told me that I wouldnt clot while i was on blood thinners. Things started settling down a bit when I go to school one day this past september. I scratched the back of my neck and my teacher freaks out at me he saw this bubble form when i lifted my arm im like great god knows what this is. Well i was rushed from my highschool "at the beggining of lunch" by the time the ambulance came back to sick kids. It was so embarassing...anyways they told me it was just a side effect from having blood clots so i ignore it and to later be dx with thoracic outlet syndrome so im like GREAT i need surgury to remove a rib now because the blood flow around my rib gets blocked easily. I was also dx with antiphospholipid antibody syndrome which would go hand in hand with the clotting. So im trying to deal with all of this when like the last day of school we have this talent show and being a dancer i was like hey ill do my paint it black solo so im getting ready im all in my goth makeup to set the mood for the dance and everything is going good. They say my name and everyones clapping and so im like yes the music plays i dance everythings good..I go to sit down at my seat after and my legs go numb and burning sensations im like great another clot or something. I go to stand up and i totally collapse, my leg was like dead so yet again rushed to sick kids...and they do emergency surgury because they think if not i will loose my leg im like no no no...and freaking out...they do the surgury and i wake up in ICU. not the most comforting thought. Anyways come to find its artery spasms where my arteries just compress itself together and there is no blood in my legs like at all no pulse no nothing. So i got these meds from a rhe. Dr. and it turns me BRIGHT red. Anyways i was like i do care at least i get to go home right ...so they told me they had to test me for a whole bunch of things to see if they could get any answers and so they tested me for lupus and i was tested possitive and the doctor comes in i have no idea what is going on and he is like ok we tested you, you have lupus, retest on oct 20 2005...and walks out. and thats where i am today i dont know what it is i dont know what i have i dont know what is wrong with me. They found a pain med. that works a bit because nothing does so at least im able to walk somedays and dance those days cuz im bad well they said dance is what kept me alive this long so im blessed. :halo: Things have just been so hard. I dont go a day without anypain. MY parents dont understand and they want me to stop dancing...even though they know i want to own my own dance studio and im doing pointe this year in ballet and dance is my life. Its how i express myself and its how im still here. I cant talk to my parents about anything because they get upset and dont know how to act around me but i think they got used to my complaining about pain and stuff they ignore me now alot so i ignore my pain...MY older sister and I are very close and i can talk to her about anything but this...she isnt very showing of her emotions so she will run away from me crying. She hates what i go throught but she looks up to me as she states in a poem i read like everynight saying that i have been through so much and still put on a brave face for everyone around me and i dont want to upset people. I also lost pretty much all of my friends to this because i cant drink and party not that i would want to because of my medication i would like drop to the floor and die after like one drink. I have one good best friend brittany and my boyfriend who just help me so much and so does my dance teacher miss tania we always talk. but i always feel like i am putting to much stress on them if i talk to them about stuff. I always feel like i have to hide behind a mask, and i am just not a happy person,..ill always remember my normal life as being a 13 year old. but now i just feel like life sucks and i hate sufferin but i wouldnt want others around me to suffer for the loss of my life. I dont want things to control my life but im just so tierd of this. I dont know half of these people on here do it everyday but i just wanna give up. I really need to talk to someone....sorry it is so long...

[pearless]

edcdancer
Im so sorry you hurt all the time and no one is listening. People on this board are very good, and commpassionate listeners. Most of us know exactly how you are feeling because we have and do go through what you write about people turning their backs. Its not just an age thing. People just dont understand this horrific disease and some dont want too. You are very lucky in the aspect that you have a good friend and boy friend. Help them to understand what you are going through. This disease causes severe depression sometimes. Are you on anything for it? You have been such a courageous young woman to have gone through what you have and continue with your dancing. I believe most of us here are like that. We keep going, put on the fake smile and try not to let anyone know that we are hurting so badly inside. Are you able to print off some info for your folks about this disease. Helping them to understand your disease will inevitable help you to deal with it not just physically but emotionally too. Remember, when your in a flare, you need to rest as much as possible. I understand dancing is your life, but when your hurting take it easy and dont over do it.
best wishes to you
pearl

[alobreto]

Hi, Dancer! ;)
And a warm welcome to you! :wave:

You've come to the EXACT right place to let your feelings out. :thumbs: As was said, many of us will be able to relate to what you're experiencing. We know firsthand that life can be very difficult at times when you have a chronic health problem, or in YOUR case, more than one chronic health problem.

I have to say that since you are very early in your treatment of lupus, you really won't have a tremendous amount of improvement immediately from many of the meds, including plaquenil. Some of them can take several weeks to begin to show improvement. It is well worth the wait, however.

I'd like to caution you about info you find on the internet on lupus. Anything that is more than 4 or 5 years old should not be taken as relevant. Too many advances in care have happened in the recent past for info that old to mean anything at all.

I'd also like to caution you that most of the people who post on forums for a particular illness including lupus, are not doing as well as many other people with the same illness. They are here because they need more support. Other people with lupus are out leading normal lives.

You may find that when you're on the right medication regimen, you are able to do most anything, including ballet. Congrats on being en pointe, by the way! What an accomplishment! :thumbs:

I understand how it is with people who care about you. In my case, I try not to complain to them because they can't help and it's upsetting to them. I talk to folks here because they understand and sometimes they DO have tips that can improve things.

I wish you the best!
Angela :flowers:

[Paulin46]

Hi Dancer

I'm going to give you a hug, okay?

((((((DANCER)))))) :hugbetter:

I feel your pain Dancer. You are so young to have to go through so much. :(

Your parents and your sister are probably in so much pain, because they hate to see you suffer. That is why they distance themselves from your pain. I know they love you and care, especially your parents. I bet they would trade places with you in an instant. :sigh:

Hopefully, now that they know that you have Lupus, they will be able to give you the right meds to help you live a semi-normal life. :nurse:

I am praying for you that you will get better, so you can dance and dance and dance!!!!!! :jump:

[edcdancer]

Thankyou to all of you who actually took the time to read that long post...im so sorry...!! I am on no medication for lupus or for depression...which makes things very hard for me.

We moved my sister to her dorm in university today and i miss her so much right now. :cry: I can still call and email and msn her but its not the same ill miss her so much! :erm:

I am going to Sick kids hospital for pain techniques this wednesday so im interested to see what she will say and stuff..

I will make sure i keep everyone posted as to what is going on. Since my em. surgury that cant seem to get my INR levels right...and im in pain more than ever but i should be ok...

Thanks for everyones help on everything...i hope we all keep in touch...i will prob post again tonight...one second im fine the next...not so good...

:flowers:

[edcdancer]

:hugbetter: Oh and thanks for the hugs guys...i really need it...and i tend to be alone often now cuz my dad works days and my mom nights and sister is gone...so someone is gone the other is sleeping....it sucks...this is all new....

and ((((((HUGS))))))) to you all back

[Paulin46]

Good to hear from you again Dancer. Yes, it must be hard to have your sister gone to University right now. But do take advantage of the internet to keep in touch with her. In time, it will feel like she is right beside you. :love:

Anytime you get lonely or are depressed, come online and post. Or you can PM any one of us. ;)

((((((Good Nite Sweetie!))))) :cloud9:

[zara]

Hi Dancer,

You've been through some scary stuff.

I just wanted to say hi :wave: and welcome you to the site. You're not alone in feeling alone sometimes http://www.abcwebworx.com/smilies/people/people357.gif but you will find lots of people here who understand what you're going through. They're full of good advice or just plain ole hugs, as you've learned. :D

You should try the chat room if you haven't already. There is usually someone in there, but if not, wait a few minutes and someone might come along.

Regards,
Zara

[nicole7]

:hugbetter: Hi Dancer

I'm sorry to hear that you are having to deal with so much at a time in your life that's not easy for even a healthy person.
I'm very happy to hear you talk about your goals and dreams for the future. I hope you keep dancing...forever even.
You are never alone...there are many people here alone that want to support and care for you.
I wish you all the best at your pain clinic.
N

[jude mack]

Hi Dancer :P

I just want to welcome you to the boards. I'm sorry you are going through this
at such a young age, I see you have a positive outlook and this is what will get
you through alot of the bad times. Hopefully you will feel much better soon with
medication. I'm glad you came here for support, you will find lots of people your
own age to talk to as well as others, who are here to help you and make you feel
at home. Take Care Jude :shake: :flowers: :shake:

[AnM]

Hey Dancer & Welcome!!

U have come to agreat site, but i am sorry for what has brought u here!! hugssss

I also, in addition to the Lupus have APS, and not too long ago was being looked at for TOS- Thorasic Outlet Syndrome. As I've also have had a number of clots even though i am on Coumadin (an anti-coag.- "blood thinner"). n have had a bunch of clots in my arms.

I can also relate to not being abl;e to get your INR stable. But, u will find the correct dose, n just keep any eye on your levels. What level do they want u to be around, btw? just curious.

I know it's difficult at that age to be sick and deal w/ friends and all. i 1st got sick when i was about 11/12 yrs. old. & my friends didn't understand the symptoms or side effects of meds. n i had to give up things, or not do things.

It is great though u do have the comp. as at that time, we didn't have the internet. So, u n your sister will be able to talk a lot through that, and IM in real time.

Anyways, hope everything goes well at Sick Kids. Have the docs. discussed any meds. w/ u for the Lupus yet?

Take care, n hugs,
Alicia :coffee:

[edcdancer]

A reply to alls posts....to everyone thanks for reading i know it was long...and thanks for posting...i know someone cares!!! :flowers: FLOWERS to you all...and :shake: nice to meet you all and :hugbetter: hugs to you all back!

We start with my first post respond!
PEARL...I am not on any anti-depression medication, and Thankyou so much for all of your advice..I tell you I will be following all of it! And i am glad to see that you care and you have really boosted my self esstem....thanks for everything your an angel! :halo: I hope you post again!

ANGELA....Thanks for the welcome! I am glad to hear that the medication works well...i just hope i get it soon, so i can take it! Thankyou for the caution about the information on lupus that is definatly good to know. It is upsetting to know that many people here may not be doing very well and i expected that because they would need the most support and in that case i would try to help support them. Im glad to hear about people leading normal lives....i just hope that everyone could! Thanks about the congrats on en pointe! :love: I am very excited. I bought regular ballet shoes and a leotard today i needed many other things for dance too that i bought but we wont get into that lol! i needed many things for teaching and stuff this year! including the regular ballet shoes! and we are in the same possition as to not complaining because it upsets them..as i guess you may have figured and i do the same i love talking here! and thanks for the advice! hope to talk to you soon!!! :D

PAULINE...Thank you for the hug..ill hug you back..i love hugs! :hugbetter: I believe they are what keep me going! I think you are right about the trading deal...they tell me all the time and what you say makes alot of since because i couldnt imagine how things would be if I were my parents or my sister id be devistated! Thanks for praying for me...Ill pray for you too..for everyone on this chat every sunday at church! and as i think you know i love to dance dance dance.! I hope you are right...she will feel like she is right beside me, plus she will be back 3 days a week most weeks so everything should be just fine! :wiggle: Im glad to here that I can talk to you guys...i have those days often...now i come here!!! :D Thanks for the post...and YAY we are ontario people!!!! :highfive:

ZARA....nikki i believe we have met on chat...thanks for the post! I know that others must have been through some scary stuff too..but yea i dont think im ever not scared...and hello back to you and thanks for the welcome! :love: Im glad to here about those hugs, i love hugs!!! group hugs! and im glad to find people who understand me too..well i am talking to you on chat right now so ill talk to you there!!!

NICOLE....Thank you very much for good luck on the pain clinic...i tried pain clinic somewhere b4 where they could give me med...and it didnt work out...they didnt understand me but here they say they will give me relax techniques and stuff so im excited..ill post some advice on here if anyone would like to try it! :whisper: I hope i keep dancing too..and im glad to here ppl would want to care and support me! i feel special...hope to talk to you again!!!

JUDE....thankyou for the welcome to the boards! I feel so welcome i love it!Welcome to me life!!! :welcome: dont ask i had to welcome for something? I try to stay some what possitive...i cant be sad all the time...i dont want anything to go beyond my depression again...I hope so too...once i get the medication! Im glad I came here too....it saved my life!! I have made many new friends which is cool cuz they are all over the world! hope to talk to you soon...and take care

ALICA....thankyou for the warm welcome!!! Im not happy about what brought me to the site too...but if i didnt...then i wouldnt have met nice and caring people like yourself! :flowers: WOW...this is like reading my own information...alot in common!!!!they always change my target range for my INR but they want me to be 2 to 3 for now, but im all over the place i dont know what is changing my range all the time...all i can think is it is probably stress. Im sorry to hear about your sickness aswell...and i can relate to not doing things and the side effects too. I agree the computer is great!!! Thanks for the good luck...and no they havent talked about lupus treatment yet...i get retested on Oct. 20th and then from there when it comes back we shall be talking hopefully!! I will keep you posted i have alot of doctors appointments comming up soon...and surgen appointments...please email me and keep in touch!!! thanks you everything...

VIKKI....Thank you so much for the email...and I hope things get better for you too...im glad that i can talk to someone very close to my own age about things...it makes things alot easier sometimes...for coping anyways! ill help you out the best i can too!!! :hugbetter: talk to you soon i hope!

[edcdancer]

Update:

I just got called to my family doctor to talk to him about results of my osteo. test...hope things are ok..ill keep you all posted...i also have an appointment wed. for my pain techniques...if things work ill post them here aswell...! :hugbetter: hugsbetter to all in pain! Oh and my emergency 911 situation got handled...i didnt have to go anywhere all is good!! :nurse: nurse self handles things nicely too sometimes! :woohoo: ill post again tomorrow to update everyone!!! oh and Alica...you should get checked for bone density too with being on bloodthinners for so long...anyways im gonna hit the hay i think!!! :yawn: good night all! read/post soon!

[Dreamergirl]

Hi Dancer,

Wow you've been through so much sweetie and to have things like that happen to you at school really sucks! I agree with everyone who told you that your family are probably having a hard time watching you go through all of this. I know that probably doesn't help you right now. Remember you have all of us - and we do care very much about what happens to you. Keep dancing and never give up on your dreams. B) I hope your appointment goes well on Wednesday, remember to keep us posted.

[edcdancer]

Hey Dreamergirl,

Thanks for the post! I will post dont worry...i post almost everynight! and thanks i hope it all goes good too....and im glad to hear everyone here cares!!!
:)


hope you post again soon!

[edcdancer]

Today ladies...things have been pretty good, I never used to talk to anyone about my problems and how i have been feeling but tonight i talked to my boyfriend...it helped alot and im sure it will and we will get closer!!! thanks for the advice guys!!! :D talk to you soon! oh and names mel!

[edcdancer]

:sigh: Ok well things today went ok at sick kids at pain clinic. As i said i would post...we were talking and i am not sure if i ever mentioned this but i had talked to her about how my pain clinic before...diff team...had told me the pain was in my head and i was a perfectionist and left it at that...

umm and since i got to sick kids i have been unable to get my files to read my charts and stuff they will not let me. There has also been a lack of comunication with the doctors they dont answer my questions they respond with we are the doctors dont worry we will take care of it dont you trust us...? :hissy: uhhh hello i would if you told me what is wrong and what your testing for and what apla means? anyways they dont let me research things and its just a very bad situation. They dont talk to my parents either...we request things and dont get it..anyways so thats where were were as of this morning...we went down to health records with my social worker and we requested it but it cost $30 to get it and they will send it in the mail...but it is just summaries...not "blood results" i have that info at home.

She also told me she would talk to my doctors cuz she thinks if that is done that i may not experience "upsetness" before hospital and after hospital time if things were to imporve in terms of my care. She also gave me techniques in terms of distracting myself from the pain and concentrating on pretending so to speek that it is not there...(yoga and meditation) which has seemed to work so far. She for one is giving me internet websites to look at! :thumbs:

I was emailed today and told i should keep a diary of pain and thoughts that im gonna take up on doing...Ummm i am having bad thoughts again...im not listening to them...im just having thoughts of stopping treatment...and stuff but i assure you i wont do...

I think it started cuz my boyfriend and i havent been "as close" lately...i really want things to work out between us but we are working with a guy whos only parent is his Dad who only lets him on the phone for 20 mins at a time...and only till 10 and there has to be at least 20 mins in between phone calls. He also has a younger brother and sister...limited phone man...I really want things to work out between us...i really want to marry him...and im not just saying that...i had dreams about us being together and everything feels right cuz like wanting to have my own studio and having dance and stuff. Im just scared things might end and i really dont want them too. I try to be so strong for him...he is my life! :love: and I love him so much! I have things i still would like to do with him excluded from marraige and children...(after marriage i assure you with a professional specialist) including night walk along a beach...and him reading to me...and dancing (slowdanceing) under the stars with me...and kissing under fireworks and there are many more.

I just wish i was normal again...he deserves that...i wish he could see me painless...worryless...fearless...and most of all healthy. Anyways i know things will all work out...i just wish things could be smooth for me...I know he is going through alot right now too...and i need to be there for him better than i am...too...

anyways thats all for tonight i really cant focus right now...everything is all mush to me...i can no longer think i need to meditate! talk to you soon!

[nicole7]

I'm glad to hear that you have a compassionate social worker on your side. Sometimes they are the best advocate you can have in the hospital setting.
Keep those positive thoughts!
N

[edcdancer]

Im glad i have the social worker too...im mean she is helping me and all but my parents are in the room so i cant tell her i think im going through depression...and i really need something for it. I guess i could meditate but i dont know if i would "want" to at times like these. She doesnt know at all that i feel this way whatsoever and i try to tell my parents but things just dont work...they sorta feel like oh well dance makes you happy ull be starting dance soon...so i guess i should be ok...i just wish i could stop crying right now. I dont want to let this control me and take over my life...but what is the point of life? i know no one knows really but why do we have to suffer i will keep fighting dont worry but it would be nice to know what am i fighting for?

ill keep posting...talk to you guys later! thanks for the posts and reads

ps im feeling "dul"

[edcdancer]

oh i forgot to mention the bone density test came back good some areas more than adverage so thank god not problems! its come to the point of testings bad it shows things that are wrong with you... :cry: maybe if they cant see me they wont test me for anything... :notlook:

[Paulin46]

Hi edcdancer


Why don't you take the social worker aside and talk to her by yourself. Sometimes parents just don't understand, or they are in denial.

It would be good for you to be able to have some, one on one time, with the social worker yourself. Ask her, not your mom. I'm sure she would love to accommodate you. This way she can run interference for you with your mom.


(((((hugs)))))))))

[edcdancer]

Hey Pauline,

Thank you very much for your caring advice! I will definatly try to take you up on that! You guys all have wonderful advice! Honestly what would i do without you guys!!!

Take care everyone! Hope all is well and everyone stays well!!!

Mel :flowers:

[edcdancer]

Hey Guys...
I dont know what to say i am so stressed out right now i cant handle things. David my boyfriend came over tonight and things are going well between us he even had me up slowdancing with him because he knew it would help me calm down before school tomorrow.
The thing is...i know that there must be about 10000000 more people that are out there that suffer way more than i do...but i cant handle it anymore...i dont want to put on a brave face anymore...i was just getting used to coping with things in the summer with no school...now there is stress of school and stuff and i know people think im tough...and i try so hard i fight each day but my fighting power is leaving me and im not coping well...now with school comming im gonna be like 100 times worse!
I dont know what i am going to do anymore...and i think this might be my last post because i dont think i can do this anymore... Ill hang in there and i will get throught this...
i talked to my mom and i got the "take one day at a time talk" like i said i would...anyways wish me luck guys...im afraid i am gonna need it to get through this s*#t these days.... :cry: maybe i will talk to you guys again sometime...maybe ill post but for now...i need to lye down or do something to stop these tears.... :( until another day...

Mel

[nicole7]

Hi Mel
I'm sorry you're having such a bad day. I had one of those yesterday too. However...things look a little better today. I hope your tomorrow looks better too and that we hear from you soon!
:hugbetter:
Nicole

[edcdancer]

Hey Nicole...
Its been a few days. I had school start back and i was just getting used to what i was dealing with in the summer and "coping" with it and it got like 100 worse. Now my possitive lupus is showing up with some serious symptoms...i hate life right now but if i wasnt going though this i would never have met my boyfriend at all...and thats why im here today! Anyways thats for the support and advice. I hope all goes well with you!!!

Talk to you again soon! :wave:
Mel :flowers:

[chilly]

Hi Dancer!
I felt so bad when I read your post. You have been through so much. It's terrible. I know how hard it is when you get sick in your teens. I haven't been diagnosed with lupus yet, but I have a lot of the symptoms and have had for the last couple of years. I am 26 years old and have been ill since I was 18. I was in an accident (I was out riding), and I got pretty badly hurt. I got a damaged nerve in my face after this and has been in terrible pain since that. I use a lot of medications. I understand how hard it is to work things out with your friends. I lost most of my friends too. But when they leave you in this situation they aren't really friends. I know that that doesn't help and that you feel extremely lonely. That doesn't help when you are sick. (Remember that even though it doesn't feel like it now, you will make new friends - better friends) I can relate to the friends-thing. I was in school, but I lost a lot of hours, and I wasn't in any condition to go out. But I kept my horse, that helped me a lot. It's hard for you to dance like you used to, but a little goes a long way. I had to give up the riding a few months ago, and that has killed me. I have had horses for so many years and it helped keep me sain. But I wasn't able to take good care of my horse anymore. I hope I can start again in the future. But I think it's important that you dance as long as you can, even if it is just a little.
Someone gave you some good advice when they said you can give your family some stuff to read about your disease. I think that will help. I spent a lot of time educating my family and boyfriend on my problems and that has helped. I had a lot of trouble with my father for a long time, he just didn't want to understand that I couldn't do the things I used to. And it was very hard for him to accept it when I got disabled.
But after being sick for several years, and morning the loss of the life I had and the future I wasn't going to get, I finally accepted what I had to deal with and decided to make the best of it. It's still very hard at times, specially when I feel very bad, but I try to find things that will make me happy and don't loose hope. I have dogs and birds and that helps a lot. I find comfort in them and I don't feel as alone.
I was really lucky because my boyfriend has stayed with me through everything. It has been hard for him too, but he HAS stayed. The best ones do (both friends and boyfriends).
Please don't give up! I feeli like doing so too on the worst days, but then you will have better days.
I hope you get better soon, and that you remember to log on when you feel to bad. Then you woun't feel so alone. :whisper:

Hugs
Hanne in Norway

[edcdancer]

Thankyou Hannie for that wonderful post!!! Its good to meet new people and i hope you get riding again soon!!! :flowers:

Emotioal update: I have been "okay" My boyfriend helps me out alot...if it wasnt for this conditions or my problems i would have never met him and i wouldnt have been here today! He really is my everything. In 7 days today we will be 1 year! not one breakup...for me thats AWSOME!!! we have gotten through alot together. And not just my problems! Yesterday when i was rushed to the hospital again he stayed at my house by his self waitin for me to get home...oh hes so sweet! Id be lost without him. :love:

UPDATE Sept 17: I was rushed back to sick kids yesterday with my neck all swollen yet again they dont know what is wrong. I have to go back again tomorrow for more testing. My doctors told me they feel bad because there are never any answers. They took lots of blood from me 10 viles to be exact for inr and lupus testing. ill let you know oct. 20 what the results are. And i will let you know how tomorrow goes. They gave me meds. to take the swelling down 9 of those a day. I know u guys take lots of meds...im on 126 a week now if all days go well....i know to you guys thats prob. nothing but...WOW...!!! Oh i have been getting hair loss...mouth sores..(non lupus ones tho i got them checked) Bad joint pain...got that checked out...he was like wow...u really are im like yea...lol and muscle pains...headaches...n e ways i g2g...take more meds...) post again soon guys! I love hearing from you... :nurse:

Love you guys... :thumbs:

[chilly]

Hi again!
It's soooo good that you have your boyfriend! I know how much that helps. What would we do without them?
I feel so bad that you get new symptoms all the time and have to go to the hospital so often. I hate being in the hospital, it has been way too often this last few years. Not as often as you though....
I also get swelling around my neck and I have no idea why. It doesn't look good. I know that's not the thing to worry about, but we girls tend to think about those things a lot. :)
I hope you feel better again soon. And if there is anything I can do to help, please let me know. :)

Hanne in Norway

[edcdancer]

Hey Hanne!
Wow...it caught my eye when i read swelling around your neck and you dont know why. I havent been on here recently because i have been back and forth to sick kids hospital the past 2 weeks. My INR droped to ***1.7*** NOT GOOD!!!! I had and IV and they took my blood from my body and from the time she drew the blood and shot it into the tube they put it in...it was clotted. Yes major clotting issues over here. Last week or so my neck got REALLY swollen on the right side...just above my neck clot is. So we called they wanted to see me...i also got a lung infection from being there. So i was on antibiotics for that and anti inflamitory for my neck. They had NO idea why it was swollen because there was no new clots thank god and no infection. Anyways i go home because they dont know and im on meds so things will get better...so i miss a week of dance...which yes ladies angered me! :tantrum: then...it gets better :thumbs: Thinking it was all good...then like 3 days after the meds finished didnt my neck swellup again...but this time ...ALL over...mainly on the right tho... :( anyways...I go back to the same hospital they do more imaging and such....this is the time when my inr dropped and such. So im in so much pain at this point...and im litterally lying on a hospital bed flat down with my head straight up because i cant move it. Then the nurse kicks me out of my room because the hospital was really busy and they didnt know what they could do to help me so they made me leave with a pager and they told me to walk around the hospital and when they wanted me they would "beep" me. So i had a IV in...and i took it out myself. Then they discharge me ...and call my house 1/2 hour later telling me they didnt. Oh and they did nothing for me that i couldnt do at home...all they did was like xrays and stuff....omg i hate that hospital..! Anyways...yea...boyfriends are great! Mine is so great he is so supportive...he does somuch for me he keeps me up with my school work...and he listens to me...weve been together 372 days now!!! but whos counting. Oh but i love him! :love: he sweeps me off my feet all the time...literally probs walking! Anyways guys...i g2get going...im in pain...i should lye down...ill post again soon i swear!!!

*how is everyone doing?*

Mel :flowers:
"Ive decided im my own nurse! :nurse: "

[Rach20]

Hi Dancer,

I am new to this site and have just been reading your posts. You seem like an amazing girl who has and is going through alot! I have just been diagnosed with Lupus and can relate to some of the things you have been saying. Its great that you have support of your boyfriend and dance teacher. I'm sorry that you are lonely with your sister away and your parents working different hours.

An important way of dealing with this disease is by being able to accept it first. Then you can work positively along with your support networks and doctors to know how to manage it and deal with it.

I am praying for you

:)

[*tEsSaBeAr15*]

hey i am tessa and i am 15 too ... i was diagnosed with lupus o august 3 !! in early june i was havin a really hard time getting out of bed n my body hurt really bad , my parents thought it was my mattress so in july i finally got a new mattress. well it wasnt the mattress that was the problem!!so for the next month i was having all these pains . i kept complaining. one hot day i was outside swimming with my grandma laying in the pool getting a sun tan jus havin funn like any other normal teenage ghurl !! the next morning wen i woke up i cudnt move my body i had a high temperature and i had this red rash all over my face !! it was sooo embarrissing ... my ma hurried up and got me into the doctor! wen iwas at the doctors , the doctors dint kno wat was wrong wit me so she asked me tessa explain the way ur body feels n i told her that it hurts and that i cant do the normal things that i use too .. n she was lookin at me wit dis werird expression and was like we need to test u fer LUPUS.. me not knowing wat lupus was er ne thing i started to cry.. wen the doctor left the room my mom told me that LUPUS runs in our family !!! ever since that day i have not been the same person .. i truthfully can say that having this disease has ruined my life .. like how u rt a dancer, i was into the sports i played vball and basketball and softball, i luvd being in the sun and i was always on the go . and now that i have lupus i am this sad little depressed girl .. i kno exactly how u feel about havin no one to talk to about wat ur goin thru with ur lupus because i am going thru that too .. i also have an older sister that i talk to aboutmy lupus buti always feel like wen i talk to ppl about my lupus that im makin them feel soory fer me and i dont want ppl feeling sorry fer me i jus want thwm to be aware of how i am feeling u kno ??? so if u wanna talk i wud be happy too !!! i hope u wite bak !!

[edcdancer]

Hey guys,
Things are really hard for me latly...coping with all of this with the like school and dance...i just want to quit school so bad and thats so not like me...i have EVERYTHING all planned out and now i have no will to want to do ANYTHING...i dont accept my problems and i feel like im a ****ty dancer...even though i have been on national stages....its just i dont feel like me anymore....my hips locked so now im not as felxable n e more...and i just feel like a horable person all the time...i know i have my bf david and stuff...her really helps i just wanna stop crying,...i want to go on with my life...i want to be NORMAL...and at the same time i wish things stopped...i wish i could not have existed EVER...whats one less person in the world? I try so hard for my family and for David...i just I cant live like this...Nothing is helping me...I want these tears to stop....please any advice...would be greatly appreciated...*im independant....i dont like getting help from professionals....they dont know anything about me EVER...im abnormal!*

Thanks guys.... :cry:

Mel :flowers:

*trying to hang in there*

[chilly]

Hi again!
I feel so bad! Don't ever think that you are not important to the world! You are, we all are. But I DO understand why you feel this way. I have been feeling sooo bad for a long time too, and just when I thought it couldn't get worse my TN (facial pain) got worse. It just went crazy! It's a reason why they call TN the suicide disease.... I also wished I never existed, and still do some of the time. And I know that I will feel that way from time to time for the rest of my life. Not a good thing to think about. I have also been in the hospital because the pain was sooooooooooo bad, but they couldn't help me, as usual. So now I'm back home trying my best to cope on my own. One of the terrible things about TN is that it is almost impossible to eat and I can't talk. The only food I can eat when it is like this is soft food. And of course in addition to this my body hurts so much that I can't get out of bed in the morning, I throw up from the pain. I was so relieved that some of the headache was gone when the TN got worse, but of course it came back.
I get that you want to be normal, but then again, who is? I was never normal... :P I have always been a bit weird. But when you're in school all you want to be is normal. Please don't quit school! I managed to get through school, but I had to quit when I started my higher education. I was in the University for a while among other things, but I couldn't keep going. I hate that! Talk to your teachers so they know how bad you are feeling and they can help you do the best you can. I lost a lot of classes my last year of school and had a hard time with some of them because of this. But my teachers were great, they gave me extra help when I was feeling better so that I could afford to stay home when I was feeling worse. That is a possibility. They knew how sick I was and took that into consideration, so I still managed to get good grades.
If I can help you in any way, if you are feeling terrible, you can send me a PM if you want. :) I can't promise that I will answer right away since I, like you, spend a lot of time in bed, but I will try to help you. I have been where you are, and still are.

Hugs Hanne

[edcdancer]

Hey guys!!!
Im so sorry i know that it is so long since i have been here last...things on the site has changes so much! The thing is guys on Oct 20 2005...the beginning of the end of my life happened. Everything was going so well i started on Pointe a few weeks ago and everything is going well...i also was awarded a ballet competitive solo which i was so honoured because my ballet teacher only thinks i can do this and i will be the first person to ever do a ballet solo at the studio...im so happy. I am also teaching dance...ballet and i will have my dreams the thing is...i just found out i have SLE... style_emoticons/<#EMO_DIR#>/sad.gif I know im not alone her but it sucks. I have Raynauds, Arthritis, antiphospholipid antibody, and now SLE.... style_emoticons/<#EMO_DIR#>/crying.gif
Hanne...thanks for your message! and advice i promise you i will do those things! I wont quit school although i cant cope with anything right now...how do u guys do this...your all so strong...i idolize you all!!please take care of your TN!!!
I hope you all stay well!!!
style_emoticons/<#EMO_DIR#>/wub.gif love you all!!!
PS PLEASE HELP ME

[mellowflyer]

Dear child:


Do take care of yourself

[edcdancer]

mellowflyer!!!
Thanks so much for your replay it made me cry...Im glad to see though that now everything is getting a bit better for you!!! Ill try to support you the best i can too!!! Things really are not that easy for me and i am not coping well mind u it has been what 5 days!? Anyways i am planning on selling those Lupus pins and bracelets at my school and around my town to get people aware of lupus and maybe one day have a cure so we can live our lives ALOT easier!!! (not thats im trying to take the easy ways out)

Anyways i really need to get back to this homework piled up that i have !!! Thanks for everything guys you are amazing!!! style_emoticons/<#EMO_DIR#>/Thanx.gif style_emoticons/<#EMO_DIR#>/foryou.gif

luv

Mel style_emoticons/<#EMO_DIR#>/flowers.gif

[beauty]

hey....

I'm sure yoy got lots of reply...and I would love to talk with you...do you have a yahoo, msn , or excite mess? If so we can change #...so we can talk...talking to ppl who have been there will help you....I to have antiphospholipid....blood disorder....I found out after I lost my baby due to APS ...I have also been on the shots...there no fun...but if it work hey.... and as for your parents they just love you and are scared....I lost my baby so, I know the fear they have ...it's hard to stand back as a parent and watch your chid get hurt or be in pain...and not be able to help....us parents that our job...so keep your head up...and what does your dr say about dancing? You can't just stop living....you just have to fight harder then most people...and in the long run that ok....but that will make you a stronger person....you know your body and will learn signs...just listen to them...if your body say don't dance today then don't push it...and never give up on your goal....evryone told me not to try to have another baby and that I could loss another baby or die myself...but I didn't give up...it was fun and easy like most but was worth every shot and every min. to hold my babys....I now have a 3 yr old and a 10 month old....we are all health...after 5 yrs. I am now told I have both lupus and antiphophlipids.....theres a good site on here for that as well I can give you....if you like...find good drs. and get as much info as you can....does your parent get on here as well? might be good for them....it's hard for some people to understand...b/c we don't look sick.....I hope we can talk one on one....where r you from...? a good place to go is a student hospital...has good drs. ...hope to hear from you...good luck...

carla

[edcdancer]

Hey Carla...
Im talking to you on msn!!! Hang in there girl!!! we will give eachother strength! oh im from Canada!!!

g2g lupus doctor on the phone...imm all sick today! style_emoticons/<#EMO_DIR#>/ermm.gif


Mel style_emoticons/<#EMO_DIR#>/foryou.gif

[stefanielawrence]

Hi Melissa,

I think you are extremely brave. I know exactly how you are feeling but it should reassure you that everyone here is on the same boat!

I am a singer, and my SLE has been playing up lately - i had pleuretic pain and fluid in my lungs and around my heart. Mostly inflammation.

So you can imagine what i started to think! But, things are on their way up! I am on meds and they will get reduced - and as they reduce - so will the flare! Yours will too.

Never forget that this is a temporary thing. You will recover. It may not seem like it now but in a little while it will.

With my flare, the doctors originally thought clotting, but the conclusion was that there was none - so i feel very grateful. I am on aspirin a day, as well as plaquinnil and steriods - which will be reduced.

You will be dancing soon - just like i will be singing my heart out again very soon. Never give up and stay positive - we are here for each other - remember that.


HUGS HUGS HUGS from Scotland!!!! style_emoticons/<#EMO_DIR#>/hugbetter.gif

style_emoticons/<#EMO_DIR#>/wiggle.gif - you dancing!

style_emoticons/<#EMO_DIR#>/hyper.gif - me singing!

Love stefanie x

[edcdancer]

Awww Stefanie!!!
style_emoticons/<#EMO_DIR#>/foryou.gif style_emoticons/<#EMO_DIR#>/hugbetter.gif Thanks so much for your post!!
I hope all goes well for you and hang in there too!!! style_emoticons/<#EMO_DIR#>/woohoo.gif for you...your the brave one!!! You say i will recover and that this is temparary....well the doctors said lupus is for life. im so confused right now..I guess it is because nothing ever gets better for me...im always getting worse so i assume it is gonna be that way always i guess. I think i know what u mean tho....that flares and such if i continue to take care of myself! Well hang in there...

Hugs from Canada! style_emoticons/<#EMO_DIR#>/hugbetter.gif

Nice to meet you style_emoticons/<#EMO_DIR#>/shakehands.gif

g2g guys...splitting headache!!! style_emoticons/<#EMO_DIR#>/crying.gif

Mel style_emoticons/<#EMO_DIR#>/flowers.gif

[stefanielawrence]

Hey melissa!


I know that lupus will probably be a life long thing - but there are lots of people with which it can go into remission - a flare can last what seems like an eternity, but i believe that flares will subside.

Positive thinking goes a long way in beating this.

Im starting to feel better, really slowly, but the last two days I have felt an improvement, and am starting to feel a little more human again!

I am going for a walk in the day, which doesnt sound a lot, but i couldnt have done it a couple of weeks ago.

you go through so many emotions with it -- i know - - but if you ever need to talk - just post away.

i hope you are feeling better.

love love love

Stefanie xxxxx style_emoticons/<#EMO_DIR#>/ok.gif style_emoticons/<#EMO_DIR#>/bigsmile.gif

[edcdancer]

Hey guys!!!
Awww stef!!! Your so sweet!!!! I will take all of your advice! I am walking too...they told me to stay very active. So i dance VERY often we wont go into that schedule because you guys will think im NUTS! On weekends i go for a walk with my mom...prob is, i eat normally...more even now,...and i am loosing weight SO BAD!!! oh well...
So guys...recently i have been doing my own fundraisor im gonna sell wristbands and you know get awareness and research out there for us all!!!! Anyways i g2g take care everyone!!!

style_emoticons/<#EMO_DIR#>/wub.gif you guys!!!!

Mel style_emoticons/<#EMO_DIR#>/flowers.gif

[edcdancer]

Hey everyone!!!
Things have been okay i guess!!! The wristband thing is happening so i have been busy organizing all of that!!! I have also been studing for my G1!!! YAY my b-day is in 2 days!!!! Oh I also will be finding out on the 30th if i can get my rib removed i have alot of appointments comming up so i will keep you posted!!! You guys be sure to keep me posted too!!!! Hope you guys all stay well and i hope to hear from you!!!

Chilly...your in my thoughts and prayers!!!

Mel style_emoticons/<#EMO_DIR#>/flowers.gif

[mellowflyer]

HAPPY BIRTHDAY !!!


style_emoticons/<#EMO_DIR#>/foryou.gif

[chilly]

Happy birthday!

And thank you, Mel, you are the sweetest!
style_emoticons/<#EMO_DIR#>/Thanx.gif

Hanne

[stefanielawrence]

HAPPY BIRTHDAY MELISSA!!!

ITS MY PARTY TONIGHT AND MY B-DAY ON SUNDAY - SO IM SURE BOTH OF US WILL HAVE A GREAT WEEKEND
!!!!!!

HOPE YOU'RE FEELING GOOD!

STEF XXXXXXX

style_emoticons/<#EMO_DIR#>/foryou.gif

style_emoticons/<#EMO_DIR#>/wiggle.gif

[mellowflyer]

Had a good time?

[jude mack]

Hi Dancer

I am sorry to hear you are still so unwell. I'm glad you have your boyfriends support, he has got
to be a great guy. It is so hard living with lupus at your age, but you are doing it and from your posts
it looks like you are trying very hard to feel better, even though thier are times when you want to give
up.

I think if you could get some help with your deppression, you would be able to cope so much
better with pain and many other things that are going wrong right now. Maybe you could get
the social worker to talk to your doctor about deppression for you. I wish you all the best and
will keep you in my prayers. I hope you are feeling a bit better soon.

Take Care
Judehttp://i20.photobucket.com/albums/b221/bevismack/Angelcopy.jpg

[edcdancer]

AWWW thanks guys for the happy birthdays!!!! It means alot that you remembered!!! and thanks for the e-mails too!!! OH and Happy birthday to you too Stefanie!!!! I had a pretty good week that week!!! Got my G! all was good!!! The rib removal surgury was a no go...and cyst one i find out in a few days...i have also been in a HUGE flare!!! it could be worse tho...the fundrasor so far $2221.00 ish so its gooin well...im at sick kids tomorrow for lupus clinic so ill let you guys know how it goes!!! I have not been coping at all l8ly but it all takes time!!! and i know u are all here for me...anyways i g2g i have to sleep i have to go tomorrow at 5 am!!! im gonna die!!! its to early man!!! well take care everyone. I send my love!!!!!

style_emoticons/<#EMO_DIR#>/foryou.gif Melissa

OH AND MAYBE YOU CAN PLEASE KEEP MAUREEN MY FRIEND FROM CANADA ALSO IN YOUR PRAYERS SHE IS 26 AND HAS LUPUS ALSO....SHE USED TO COME ON HERE ALL THE TIME BUT ISNT WELCOME ANYMORE OR SO SHE SAYS...I DONT REALLY KNOW WHAT HAPPENED...BUT SHE IS IN THE HOSPITAL AND HAS BEEN FOR A WHILE NOW...SHE IS ON DYALISYS AND A RESPIRATER AND KEEPS SIEZURING....IM REALLY SCARED SHE IS IN A HUGE FLARE...SHE NEEDS YOUR PRAYERS!!!!!! PLEASE KEEP HER IN YOUR HEARTS!!! style_emoticons/<#EMO_DIR#>/hugbetter.gif style_emoticons/<#EMO_DIR#>/sad.gif

[edcdancer]

Hey Guys
I know it has been a long time...my lupus is starting to get bad again...i have been really stressed recently too...i just really need you guys...

I g2g sorry so short...longer next time i promise...

Mel style_emoticons/<#EMO_DIR#>/flowers.gif

(cant handle my life right now)

HOW DID YOU COPE WITH LUPUS?

[oesa]

Hi Mel - I'm Lisa, and just joined the boards over the holidays.

Your story really touched me, maybe because I've made a trip or two to Sick Kids myself. I was diagnosed with SLE in 1986 when I was 14. (don't do the addition please!) I lived in Hamilton then, so I made a few trips in to TO to see a pediatric lupus specialist at Sick Kids - don't remember who, but I sure remember the massive amounts of blood they drew for tests!

It's hard not knowing exactly what is going on with your body. I was sick for a year before I got a diagnosis. (or at least the right one.) And it also takes time to find the right combination of medications to bring things under control. The docs at Sick Kids are good ones though - I'd trust them, but I'd still be asking lots of questions. I was an information junkie - it helped me feel more in control of things, and there was little enough that I could control.

How did I cope? To be honest, I don't think I did cope all that well. There were things that helped - my family, my friends, dance, music, singing - but ultimately, the only thing that kept me going was hope. I had a team of docs I trusted, and I knew that I would get through it with their help. Have faith - that your docs will find the right meds, that you will be able to open that dance studio - whatever it is that you need to believe in, keep holding on to it.

My thoughts are with you - keep posting, and let us know how you are doing!

Lisa

[swecri]

hi dancer,
im sorry to hear you are feeling so down, u have been so brave but i also know that sometimes its not the physical pain that you hurt from the most its the pain of restrictions? i sometimes get myself so worked up when i cant run with my friends across a football pitch or chase my nephew when he wants to play. i often feel the pain from not being able to do what i used to be able to do. But one thing i picked up when reading your posts...have you ever tried writing?? like professionaly? you have a wonderful style of writing which i found very origional.
are you interested in english language? i understand that your heart breaks that you can talways dance but maybe you could find something else to occupy yourself with??? your writing skills are very good and i think you have real talent.

hope you feel better and that the help and support people offer you here can be of some comfort to you, knowing that you arent alone

peace and love sarah

[swecri]

<div class='quotetop'>QUOTE(stefanie @ Nov 1 2005, 12:55 PM) Quoted post</div><div class='quotemain'>
Hey melissa!


I know that lupus will probably be a life long thing - but there are lots of people with which it can go into remission - a flare can last what seems like an eternity, but i believe that flares will subside.

Positive thinking goes a long way in beating this.

Im starting to feel better, really slowly, but the last two days I have felt an improvement, and am starting to feel a little more human again!

I am going for a walk in the day, which doesnt sound a lot, but i couldnt have done it a couple of weeks ago.

you go through so many emotions with it -- i know - - but if you ever need to talk - just post away.

i hope you are feeling better.

love love love

Stefanie xxxxx style_emoticons/<#EMO_DIR#>/ok.gif style_emoticons/<#EMO_DIR#>/bigsmile.gif
[/b][/quote]



I just flipped through your biograghy on your webpage. You go girl-you little achiever you!!! you should be so damm proud of your singing achievements!!! good on you girl and keep it up!!!!
peace and love sarah x

[edcdancer]

Hey everyone. I am sorry i havent been posting latly. Alot has happened so here is you 411:
(oh thanks guys for your compliments...and I thought i really sucked at writing...ill give it a shot...i have english this semester too so that should help! style_emoticons/<#EMO_DIR#>/Thanx.gif

So heres the 411:

my cyst on my overies...gone thank god but i now have one on my leg and on the 15th of febuary i have to get it ultrasounded because it has been bugin me and if it continues i have to get it removed. I also have to have a thrombosis check up at sick kids that day too.

I recently find out my NANNY (grandmother) is dying of cancer and she was just dx the day they told her she was dying from it...so we have to go to newfoundland soon to visit her to say goodbye....its gonna suck...were soo close and she is all i have left. MY POPPY died when i was young and my grandma a few years ago...my other grandpa has cancer too and has one eye...his is spreading fast too..and he doesnt have much longer either...its scares me.

I was recently at sick kids like this past monday and I found out lupus is active in my muscles too now...which support my lupus joints...great huh...but i know it could always be worse! style_emoticons/<#EMO_DIR#>/blink.gif

So as always i resort back to my dancing to try to keep up my spirits. So i get in my solo mode...which is like a romeo and juliet love thing...so i think of my boyfriend and go with it. its really pretty its ballet. And so i am in my living room dancing away and BAM. style_emoticons/<#EMO_DIR#>/crying.gif I find myself on the ground holding my ankle. i spend 1 hour icing it waiting for my lunch date!!!

So then I was becoming "ok" with all this..sorta .i met a nice lady who i have become good friends with she has lupus too...shes 40 but her actions dont say that...she is really cool....one of those...Im not gonna let this get me down...lets go shopping types. Anyways she knew i was going through alot so she took me out to have lunch with her and she is so nice she gave me a gift certificate for this awsome store and told me to go wild!! anyways so she picked me up at 12 and i got home about 4:30...walking all this time...foot in a tensor..thought nothing of it hurt a bit but nothing stops me.

So i get home call my ballet teacher tell her not to come in early because i cant dance on it says the mother. My dad gets home...you should get it checked since you could get blood clots and stuff and with lupus and stuff...you never want to push this stuff...so i go to the hospital...surprize the heck out of the nurse when she found out my medical history and say me say lupus and put a mask on my face...went to fast track then x-ray to find out i broke my ankle!!! well my growth plate actually so i go back on wednesday to get it re checked by and orthopedic surgen! wish me luck...hopefully i can dance my exams and comps. This year!!! style_emoticons/<#EMO_DIR#>/scaredy.gif

So you would think this would all really bum me out...well it didnt i was really happy and positive and stuff....until i got an email from my best friend. Her name is Alex and her and I have been best buds...well kinda like sisters or twins since she was born...n e ways here is her email....

Title: IMPORTANT READ RIGHT AWAY...Feb 3

Hey Melissa!...I'm so sorry to write you like this, and tell you like this...but I've been thinking about this for a very long time and I don't know how else to do it...I just wanted to let you know that on Saturday (the fourth) I'm moving to Guelph...Again, i am SOOO incredibly sorry to tell you like this...but its just SO hard to tell you becuase you are my oldest friend...my twin even...and telling you makes it seem even more real and more difficult for me. becasue leaving bradford means leaving you, and you are my childhood...my life...and it kills me. But anyway, ive been staying at cassy's for the past three motnhs and theres just all this complicated stuff going on so it was decided a little while ago that i have to move to guelph to live with my aunt and uncle. anwya, im soooo sorry im telling you last minute, and im telling you in such a crappy way but i just...im feeling so lost right now that this was the only way i knew how to do it. Anway, if you want email me back kay? Love you, Ally! p.s PLEASE dont be mad...

So i was crying at im moving to guelf again.. style_emoticons/<#EMO_DIR#>/crying.gif It breaks my heart having her gone... (we will keep e-mailing tho)

So yea...im kinda down!!!

I appreciate everyone who reads this...and who cares about me...if u ever wanna talk...you can e-mail me or add me on msn ok guys... style_emoticons/<#EMO_DIR#>/wub.gif love you all...

thats it for now!!!

-mel style_emoticons/<#EMO_DIR#>/flowers.gif

[edcdancer]

Hey guys...its me again


Please help me...my friend needs your help...her name is maureen...and i dont wanna have her give up...she has been in the hospital for as long as i can remember and getting really bad...she is in a REALLY big flare!!!she is writing happy birthday letters to her nefue logan...in case something happens she is at 18 now...and this is with siezures and halusinations and stuff...please help me pray for her!!!!!i dont want her to give up...she is why im still here...she has helped me sooooo much!!! please help maureen hang in there...


PLEASE PRAY WITH ME TONIGHT!!! style_emoticons/<#EMO_DIR#>/crying.gif

Melissa

[happyartist]

Hi Melissa, we haven't met. My name's Janae, I just started posting a couple of days ago.

Your friend has all my prayers. I hope she will be okay.

[Graciella]

style_emoticons/<#EMO_DIR#>/foryou.gif Hello dancer and welcome to this site. (((((((((Dancer))))))))). I hope you are feeling better soon, I know your frustrated and life doesn`t feel so good right now, but be strong, once they find out your diagnoses and start you on the right meds you will start feeling better.. It sounds like you`ve had a rough year, style_emoticons/<#EMO_DIR#>/aww.gif I hope things get better for you, remember we are all here any time you need to vent. Good Luck and God Bless you. Graciella style_emoticons/<#EMO_DIR#>/biggrin.gif

[anitav]

Hello there hunny!!!
You poor thing!!!! So young!!! i got lupus when i was 15....and it is hard to understand WHY these things happen??? My family are weird with my lupus they "try " to understand but they never will it is sucha horrible diseaseand it could make or break a person!!! I went through a really bad depression and wanted nothing more than to die the pain was excuriating. I could not even go to the toilet luckily my BF was there to help me through everything. He is great about it and is my rock. i suffer really bad mood swings and migranes which turns me into a you know what!!!!It is unreal the other "sypmtoms" that come along with this you know???
hang in there hun i know your in pain and do not have many people to talk to but please this is why we have message boards! TO MOAN and groan lol!!!
take care please keep me posted..
luv anita

[lilsweety89]

<span style="font-size:12pt;line-height:100%"><span style="font-family:Comic Sans Ms"><span style="color:#FF99FF">Hi Edcdancer! Umm I read your post and I really really liked it, I sent you and email already cause Im kida new on here and I didnt know how to post one of these but now i do style_emoticons/<#EMO_DIR#>/smile.gif so yeah Im gonna. Im not stalking you or anything I just really wanna help if I can, I totally understand what you mean. Your post really touched me,Im also a teen with lupus and its really hard I know, i dont wish they disease upon my worst enemy. I know its tough right now but it seems like you have people who really care about you and I know your gonna be just fine with time. Hence the word with time. I still have a hard time dealing with lupus but I think Ive gotten alot better than I was in the beginning,at first I was kida in denial and I was really bitter about it( still kida am) but with doing research and working out and stuff it got better.If you need a friend Im here ok style_emoticons/<#EMO_DIR#>/smile.gif take care and good luck with your dancing, i hope that goes well for you style_emoticons/<#EMO_DIR#>/smile.gif And Ill pray for your friend!
p.s. i also go to sick kids! maybe we'll see eachother sometime,that would be really cool!</span></span>[size=2]</span>

[edcdancer]

Hey Everyone!!!

Thanks so much for all the prayers for Maureen!!! They worked! Last time she was out of the hospital for only one day and had to go back. This time she has been out since monday not feeling 100% but with time she will be back to herself again! So thanks again!!

Hey Janae, Thanks for posting! Thanks for the prayers! And i hope you keep posting we are all here to help eachother and Welcome!!! Hope to talk to you soon!

Hey Graciella, Thanks for posting oviously and for your caring. style_emoticons/<#EMO_DIR#>/foryou.gif

Hey Anita, I will definatly keep you posted!!! How are you feeling? I hope you hang in there too...sounds like you have had ur share too! I definatly know about the mood swings...i actually had a bad one today and my boyfriend and i got into a fight. Everything is ok now tho! I hope to talk to you again soon!!!!

Hey Lilsweety89 I added you on msn! I hope you dont mind. Id love to meet you and talk more since we have ALOT in common. with going to sick kids and all. when do u go next? oh do u have a lupus Wristband? I have been selling them at sick kids! Welcome to the message boards too!!! style_emoticons/<#EMO_DIR#>/tongue.gif Im glad all is getting better for you and i know how you feel. Hope we can talk soon!thanks for the prayers!!!

Im praying for you all!!!Take care and hope you guys stay healthy well as healthy as you can!!!

love you all!Thanks again! style_emoticons/<#EMO_DIR#>/flowers.gif

Mel:love:

[macfamily53]

Dear Mellisia

I have not chatted with you since last summer when you first joined i highly doubt you rember me lol. I am Tammy from illinois. I enjoyed talking to you so much. You are so young to go through so much. You say you do not know how we get through all of this. I think the same thing of you mel. I feel what i am going through is nothing compared to someone else. I think we all tend to do that. It is hard no matter what because we know we have to deal with it the rest of our life but we want to be here for a long time that is what gets me throuhg i guess. I am glad you sound like things are getting a little better anyway for you.I just sat and read the whole post from begining to end lol. Yes i do have a life but really wanted to know how you were doing. I am glad you are able to keep up with the dancing sweetie but you know what the dancing is not what makes you it is your wonderful personaiity adn warm heart you no doubt have. I am just saying i hope you get to keep doing it but do not think you are nothing without it because you are no doubt. I would love to get a hold of one of the braclets for lupus have not seen them anywhere in illinois at all which is so sad. That is so awesome that you have sold so mnayof them. That is great mel really great. You are doing something to help your own cause. Well since i sat here so long i should get my lazt bottom moving lol and do something besides eating bon bons. I think you get that joke right mel. That is what they say about moms that are stay at home lol. You just keep taking care of yourself hun and i hope you are getting to talk to your sister a lot also. You had told me about her going away to college. I hope she gets home a lot also.So sorry to hear about your losses in your life to. I will be praying for you and have been. Take care of yourslef and try to listen to the doctors okay.

Tammy style_emoticons/<#EMO_DIR#>/hugbetter.gif

[edcdancer]

Hey Tammy. Of chorse I remember you, who could forget such a kind and compassionate lady! I admire the fact you read all of that holy smokes! yea i must say alot has happened. But right now im kind of scared its personal and i cant talk about it on here. Tammy i would love to talk to you alot more frequently. I missed talking to you. Anyways hun i should be going. take care of yourself ok!!! style_emoticons/<#EMO_DIR#>/wub.gif style_emoticons/<#EMO_DIR#>/foryou.gif mel