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sonya
04-11-2005, 07:24 PM
hi. my name is sonya and i'm 20. i found out i had lupus after three visits to the ER in may of 2004. i feel like i have a million symptoms and it gets really frustrating to try and live a normal life. none of my friends have lupus but by me having it they all suffer from it in some way i suppose. my father found out he had lupus when i was just 2 years old. i feel like he doesn't even understand it as much as i do at this point. he has a little rash/balding spot on his head. that is his only symptom. i have the butterfly rash, lace rashes on my arms, ulcers, TERRIBLE pain in my joints, occasional thyroid inflamations. i'm always sick it seems, i get fevers, i'm so tired all the time and is it just me or am i getting really fat?! i have put on 30 pounds since i found out and i can't fit in my jeans anymore. i walk with a cane now, which isn't the coolest thing especially when you're my age. my friend sara linked me to this site. i think it will help me cope a bit more just to talk to other people that know what i'm going through. well i hope that wasn't too complainie. nice to be here, sonya!

pharmacygirl34
04-11-2005, 11:19 PM
We are all here to help, vent, relate and have a little fun all the while meeting new people in different places of the worl who can relate to our current diagnosis. This is a great site and you will enjoy it....once you get going around and finding out what this site has to offer.

I hope you start feeling better, and should need to chat....well I am here. I needed someone tonight myself. Instead I merged with the keyboard and made it my sounding device.

Hang in there, as we all know, someone else has got something worse than we have even though what were feeling seems like the worst.

My biggest suggestion....Let it out here. Someone will hear you and they will respond.

Have a good evening, or morning, which ever you are right now. Mail back if you like and we tear up the keyboard together.

Hugs and blessings to you,
Pharmacygirl 34

sonya
04-12-2005, 09:33 AM
thanks. i think what is the most frustrating thing is that no one in my family believes or understands to the full extent of how serious lupus is. my father doesn't get it because he thinks what he has is the only kind/symptom of lupus. no one in my family comes with me to the dr's besides my boyfriend or my bestfriend. also no one in my family sees what i go through in my day to day, how many pills i have to take, how sick i get at night. it's just maddening when they don't believe me. i try to stay on the positive side of things, however it seems as though since i was 13 i have been going to the dr's for some problem and my body only seems to get weaker. one day i would like to go in have them say "well, you're perfectly fine. there is nothing wrong with you." the more they look for problems, the more they find them. thanks for listening. sonya.

Evenstar
04-13-2005, 05:23 AM
Hi Sonya,

Just wanted to say I hear ya! No matter what myself or the docs do I just seem to be getting worse. I force myself to do as much as I can and suffer badly, but I want to get on with my life but just can't. I am sitting at work today in sooo much pain in my legs and stomach with dark circle around my eyes where I couldn't sleep last night from the pain, but I am too afraid to ask to go home even though my employer is very supportive.

I think its just because I am so fed up with being ill and if I speak to my boss they I wonder if they will think "oh here we go again, surely the docs have found something to help her by now". That is probably unfair on them as really I know that they are just fed up of telling me to go. So I will sit here and suffer for longer until I get myself so wound up and upset they will tell me to go home in any case. I just feel useless, and maybe guilty for feeling ill.

Yes I can realte with the family issues also. My father has had his ups and downs of ill health, he has problems with his thyroid, but I have always been there for him. Yet my parents wont talk to me about lupus and how it affects me, so one day I took it upon myself to make a point of speaking about it and my father said "well what about me i'm ill you know". Needless to say I gave up trying to talk about it with them at that point.

I would say give your family time, mine are sort of starting to ask me questions and stuff now (I was diagnosed 19 months ago now). Its so frustrating though, I know. I don't know how i'd cope if my Dad had lupus as well?

Thanks goodness for the people on this site and my husband, that's all I can say.

Thanks for listening to me rant!!!

Carly

TracyDawn
04-13-2005, 06:43 AM
Hey ya'll. And welcome Sonya!! So sorry to see you suffering (surviving ;) ) with us tho. I hope you find something to give you relief soon. I'm still in limbo here for 7 years (my story is posted on the board).
I'm sorry your family isn't more supportive. My mom has RA and MS and still isn't supportive. You'd think she would be somewhat understanding. They just think I am ignoring them or being snobby when I don't drive an hour one way every weekend to visit them. GRRRR I work full time, am married, and have a 6 year old so by the time the weekend is here I don't have much 'me' left to share ya know?
Anyway, I really hope you find some relief and if you need to rant go ahead, we'll listen and send some hugs. :)

sonya
04-13-2005, 10:46 AM
thanks for listening and understanding. i hate trying to talk to family about it because they just think im complaining...or give me "wow, what now?" attitude. my brother told me not to tal to him about me being sick ever again because he feels like there is nothing he can do for me. i don't even talk to my father anymore and my mom is a nurse and just sort of thinks she knows everything. you would think since my father and his wife are psychologists and my mother's hubby is one too i would find someone to talk to, huh? it's just mostly a bunch of people saying to me "you know what your problem is..."
sonya,

TracyDawn
04-13-2005, 12:14 PM
I'm so sorry. It's sad when you can't get support from your own family. But we are here and will listen to you rant, rave or complain, or to celebrate your good days. :)

Evenstar
04-14-2005, 07:12 AM
Hi All,

Sonya, I just read your last post and wanted to second what Tracy has said. It's unbeleivable with medical professionals in your family you still get no support. Just wanted to say I feel for you and we will all be here to listen.
It seems to me that this is familiar to many lupus sufferers when their families do not react the way we would like them to. :roll: I have grown to think (well I hope) that this is just their way of dealing with having a child who is sick all the time??? But hey, who knows!! The best relief I get is from talking to people who have lupus too, it is good to know that you are not alone and there are people who understand what we are all going through. :D

sonya
04-14-2005, 09:44 AM
thanks. my mother seems the most suppoirtive out of my family, though she still downplays how ill i really am. she buys me tiger balm patches for my knees which i think is nice...but yeah, she just hasn't really grasped it. she's not from this country. she's from the jungles of malaysia and is the youngest of 9 kids. so i think she was brought up to be a little more self sufficient and right now i just can't be which she doesn't take very well. i haven't ever been really close to my family, as i have pretty much been on my own since i was 13. though this past year i haven't been able to work and she has been supporting me financially. should i be getting aid from the government or something? i feel helpless and i don't know much about benefits i can recieve. please fill me in if you know. thanks so much.
love sonya.

Evenstar
04-14-2005, 10:48 AM
That's great that your Mum has been supporting you. I live in the UK so benefit rules will be different. I am pretty sure you would be entitled to benefits though if you are unable to work, but I wouldn't know where to start. Someone else from this site will no doubt be able to tell you for sure.
That's an interesting story about your Mother. :) I kind of know what you mean about being on your own. My parents were never any good with advice when I was growing up. I was always left to get on with things myself. My Grandmother was constatly sick when my mother was growing up, so now my Mum cannot deal with people who are ill. She always used to shout at me to leave her alone when I wasn't feeling well as a child.
I have to confess, I have never heard of tiger balm, what is it?
Carly
X

sonya
04-14-2005, 02:54 PM
it's this chinese heating stuff...like icyhot...mm, i don't know if you have that either. it can be rubbed on and they also have these little heating patches. :)

Saysusie
04-17-2005, 03:32 PM
Hi Sonya;
Just wanted to give you another perspective on your parents reactions. Even though I had Lupus for years prior to my daughter being diagnosed, I went into complete denial about hers! Why??? I DID NOT want her to be sick. I kept coming up with other reasons for her pain, fatigue, weight gain, etc. etc. etc. Those other reasons were actually my silent prayers and/or wishful hopes that her symptoms were not as serious as Lupus. So, I would think....maybe icyhot patches will make you feel better...your pain is because you are a dancer and you over exert your muscles and joints. I mean, I went on and on and on. Not because I didn't support her or care, but because I didn't want it to be true!!! I did not want my 19 year old daughter to be sick with Lupus!!!
I, like your parents, may have done more harm than good. I am not sure and I have to live with that now that she is gone. But, I just wanted to give you this insight so that you do not become angry with your parents and to help you to understand them a little better.
Sometimes, as parents, we unfortunately operate out of love instead of logic. You must try to see in between their love and fear and talk to them openly and honestly so that they can then react to you out of logic!!
Best of Luck
Peace and Blessings
Saysusie

sonya
04-17-2005, 05:10 PM
i understand that no one wants their children to be sick. i see where you're coming from. my father and i had a huge falling out years ago and what started us talking again really was my lupus and insurance stuff etc. with my mother...i really do think it's just her being from a differen't counrty and dealing with things a lot more harshly. i believe in my heart that they both have nothing but good intentions and wish the best for me. i think that's what really keeps me coming back and having them involved. my whole life i have sort of been the parent and they have been the children. haha...i wish you knew my parents. this would make a lot more sense :)

ChelleSands83
04-18-2005, 06:35 PM
I understand what you mean about unsupportive parents. They didn't mean to be, but we just didn't talk about stuff in my family. When I got my first period...My parents gave me a book about the birds and the bees & that was it. No explanation, nothing! It's funny now, but it wasn't then.

Chelle

sonya
04-18-2005, 07:56 PM
yes, sorry to hear that. that is funny. i've lived on my own since i was 13. neither of my folks were around for the dreaded period talk or anything following. my father's fiance gave me this book "our bodies, ourselves" when i was maybe 17? what a joke, huh?

betsybailey
06-06-2005, 02:43 PM
Hi Sonya,

Sounds like you had an easy run of diagnosis. Not that the disease is easy. I'm 23 and have had lupus for almost 9 years now. I too feel like this has stolen the best years of my life. When you need to talk please email. betsyabailey@hotmail.com I'd love to help. KIT I know that my support group at home helps but they just don't get it. sometimes it helps to know someone who doesn't pity you but that understands. All the best

Betsy

val
06-08-2005, 04:11 PM
Sorry I am late saying hi. I am from uk and I had 2 years of being messed about before diagnosis. I was a nurse and retired on ill health last year. i am always on my computer and if you ever want to chat my msn or yahoo address is under my post. Please feel free to add me. I love chatting to people all over the world
Val