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Sann
11-03-2008, 02:56 PM
Hi all,

My name is Sandra and i'm from Holland.

Have been sick for nearly 2 years now, but they finally found what it is.. Lupus. Sle.

Not so strange.. considering my grandma, aunt and mother have Lupus. I finished my school which i am very proud of! There were days that i felt so bad.. but i just had to get my butt to school. I'm glad i did because now i don't have to worry about school anymore!

Anyways.. I'm fairly new to all this and i think i haven't realised it all yet :roll: Even though my family has Lupus (the aunt extremely) we don't talk about it in our home. It gets wiped of the table... I sometimes feel the need to expres my feelings and to ask questions. I'm pretty sad sometimes that i can't just ask them. My mom will just say she doesn't know. Everyone even tells me i don't have lupus, just because they don't want me to have lupus. The tests show it.. so it must be it!

I have a boyfriend who is actually my everything. We're together for 4 years and we are trying to get a house and live together! He supports me where he can, but i notice he doesn't always know how to react or what to do when i'm in pain or when i need to talk. I try to 'whine' as less as possible. but then again i want him to know what is happening with my body! I don't have friends, which sometimes bothers me lately...

My main issue at the moment is that i don't know what the future will bring. I had so many dreams and goals which i will probably never make... It's sad that i am forced to turn my future upsidedown.

I'm afraid to get medicine... but the doctors say i need it (in about 2 weeks i'll get them) I fear getting pumped with all sorts of drugs and getting all ugly and sick(er)...

Anyways.. If anyone has a question, feel free to ask.
I'm glad i joined and i hope i'll be able to expres my feelings and perhaps make some friends!

Regards,
Sandra

rob
11-03-2008, 03:08 PM
Hello Sandra,

Welcome. My name is Rob, and I was diagnosed with SLE in 2004. Rather unexpected, as I'm a guy. My mother also has SLE. Lupus can definitely turn a persons future upside down. It did with me. Many dreams were taken away. But Lupus is not an end. I've discovered new things, people and friends, and found talents and interests I would never have found had my life not been changed so drastically. Lupus is no picnic, but it's certainly not the end. We have members here who have lived with Lupus for many years, and they have sometimes difficult, but fulfilling lives despite the disease. We're a pretty laid back group, so please make yourself at home.

Rob

P.S. Your English is just fine!

KathyW1958
11-03-2008, 03:08 PM
Hi Sandra,
Welcome to the site. My name is Kathy and I have SLE Lupus and have had it for about 44 years, a long time. I will be 50 in December. I have a younger sister with it and an Aunt who has since passed on that had it. I have been on medications for years. Are the doctors wanting to put you on Plaquenil? This medication is one of the top of the line medications that they use here in the states for Lupus. I hope that you do decide to take the medications. They may even put you in remission. I think that you will still be able to realize your dreams in life. You see years ago, Lupus was thought to be a death sentence, but not anymore. Yes it is a chronic illness with no cure as of yet. You will learn what your limitations are and learn how to live and deal with the illness. I wish you the best hon and I hope that you keep posting. God Bless.

Hugs,
Kathy

Saysusie
11-03-2008, 06:12 PM
Hi Sandra;
You've been given good advice about medication and about a hopeful future with Lupus. I've lived for over 20 years with Lupus and, yes, I had to let go of some dreams. But, I found new ones that were just as rewarding.
Do not let this diagnosis define you, define your diagnosis by how well you care for yourself, how diligent you are in taking your prescribed medications, how faithfully you stick to the lifestyle changes, and how positively you live you life!
We are here to help you in any way that we can and as much as we can. You are never alone when you are here with us.

Peace and Blessings
Saysusie

coltsfan
11-04-2008, 07:50 AM
Hi Sandra,
Welcome. Your post reminded me a lot of me. I hate complaining to my husband that I hurt or I don't feel well, even though he will go out of his way to ask me how I am doing.
My brother also has lupus. He was diagnosed 15 years ago. I am in between the doctor saying I think you have lupus and the specialist confirming. I go in a few weeks to see him. When I told my parents what the doctors suspected, they didn't want to believe it either.
I don't have a lot of close friends either. I have a few friends, but none that I would consider close enough to really understand what I feel. But I have made some really wonderful friends here that listen and provide comfort and answers, and sometimes, some laughs too. I look forward to becoming friends with you.
Robyn

Sann
11-11-2008, 02:48 PM
Thanks all for the replies!

I'll probably take the medication because i now realize i need them... I just had an attack sunday. Never had that before.. My joints and muscles were hurting so bad, and also my skin burned. This skin burning i used to have a lot but only on one spot, Sunday it was everywhere on my body. I couldn't move!

Besides that i had a nausea and threw up, dizziness in my head and my stomach feels very strange, sort of pain but also something else.

Sweating as never before, not capable and willing to eat but only to drink a lot.
I even hyperventilated.

What could that be ?? i have no idea... i was scared.. it's now tuesday and i still am dizzy and nauseas and stomach feels funny.




Wow Robyn, looks like we're almost the same person :scatter: hehe!

I think it's hard to keep friends also.. as they can't understand what we feel and when we feel it. Sometimes we look okay, but we're sick from the inside. They can't see it and won't understand why we cancel again...

rob
11-11-2008, 05:49 PM
Hi Sandra,

It's good to see you. I'm sorry you are having a tough time. I too, had a very rough couple of days lately. I have to say, what happened to you sounds just like what happens to me when I experience a flare. The joint pain, skin burning, nausea, all of it. When I'm like that I don't have any appetite either. My stomach does not feel right, and nothing sounds good to eat. You are wondering what happened to you. To me it sounds like you experienced a flare like I did. That's only my personal opinion though. If this really has you scared, and concerned, you should talk to your Dr./Rheumotologist about it ASAP.

I know what you mean about keeping friends. Most of my friends just stopped calling, and coming around. They see our relatively healthy looking exterior, and are unaware of the battle going on inside. They don't realize that we don't know how we'll feel on a day to day basis, and they can take canceling on them as an insult. I learned that most of my so-called friends were just there during fair weather. My best friend, who I've known for almost 20 years now, does understand, and has been there through good and bad. I'll take one good friend over 20 fair-weather friends anytime. Is there anyone like that in your life? Just one understanding person can make a big difference.

Of course, you can always come here, and find the understanding that you may be missing in your daily life. This place keeps me going on the bad days, and lets me be supportive of others on my good days. Anyway, it's good to see you again.

Rob