KEEPING STRONG.

[Divyya]

hey everyone.
im 18,from India and was diagnosed with SLE at age 16. Intially it was really hard....the exhaustion, the crucifying hospital rooms and the changed appearance..but then Ido believe that it's all a matter of patience and faith. You gotta give your body time to heal...and the only way you can help yourself is by being positive. Trust me on that. It really helps.
I obviously have my ups and downs..and there are times when I feel like howling...but i try not to coz then eveyone around me,my family amd friends get all worked up and i really dont want them too...so i try to stay strong for them and for myself coz i know its they key solution to all my problems..but then again..i gotta break down at some point..but am back on my feet again and live my life happily.
Does anyone feel the same way?-not letting it get to you coz you know you've got your whole life ahead of you and need to be stong to get through it and keep everyone around u in hihg spirits as well?-im not saying i find it hard to e happy..im just saying i try not tolet it get to me even in that once in a while...
I would love to talk to anyone who needs to vent their feelings and frustrations.I know its hard...but ull all get past it.

Take care and a big hug to you all.


Luv,
DIvyya

[Melody2]

Good for you Divyya! I admire your positive attitude and try to do the same myself. I know this is posted in the Under 20s group, but I'm 28 and still feel I'm young despite how old my body can feel. I just wanted to post something and tell you that your attitude will go a long way in keeping you as healthy as possible...your body may get you down, but your spirit won't. No matter what life throws your way it's how you deal with it that can help you get through. Like you, I try to focus on the positive as much as possible. I admit I do feel down sometimes during really bad times, but in general it's a good idea to keep as positive as possible and surround yourself with positive energy. Keep it up! You can't help what hand your dealt in life, but you can play it to the best of your ability.

Melody :luck:

[Divyya]

hey melody,
it's great to know others feel the same way about the things u go through...some find it so hard to get out off...which it is...but im glad im not the only one who feels this way....coz honestly...i havent met any positive people...regarding the disease...i know this younger girl..who has sle and her parents want her to keep it hidden..like they're embarrassed or something...I just dont understand that whole deal. Im not embarrassed at all..and i want it to be out in the open..coz i dont see the need to keep it secret....sometimes i wonder if im doing something wrong....my parents dont say anything about it and are very supportive ...but i feel they dont like the idea of eveyone knowing i have a disease.. i dont want to be a source of embarrassment...they never say anything at that front...coz they know im not so worried about it...but at the same time..i know they dont like me talking to my best friends about what the doctor said about my knee or the sun...or any details...what do u think i should do?-am i doing something wrong by talking to people who can keep me going?-should i not talk about my disease at all?would really like your input on this...
besides me..when were u diagnosed with SLE....are u married?-does it make it any harder?
take care,
Divyya

[zara]

Hi Divyya,

I'm 29 and I think you have a healthier way of dealing with being sick than I do. My major problems only started recently and I have been keeping it from my family. I don't want them to know anything until I know something. I'm not diagnosed yet. My problems have caused me to be on such a rollercoaster internally. I think it would be harder to have my family involved at this point. Loved ones can sometimes have a difficult time accepting these things. It sounds like your parents are not coping as well as you are.

Keep on being positive and doing what is best for you and your health. You need to share who you are and it sounds like your parents are giving you that space. From what you say, it seems like they are trying to do what is best for you, even though they are having difficultly with it all. Hopefully they will learn to come to terms with your illness as you have.

Take care,
Zara :flowers:

[Divyya]

hey zara,
ur a lot older than me so i really shouldnt be the one to tell u how to deal with your problems...but i seriously feel that ur making it a lot harder ony ourself by not letting ur family know..it really helps...u need to have some form of support...everyone here is there for you but the fact remains that u need someone there to hold ur hand and walk u through this....they're bound to have a hard time..but then they need to know..coz none of them is going through more than what ur facing right now...they need to stand by u...ur hour of need..sharing it will help u cope with it a lot better...atleast one family member...im sure theyll understand...thats the whole purpose of a family...to stand by each other...dont defeat its very purpose....im sure ull be fine...just fight and fight real real real hard....am there if u need to talk...ur problems have to subside and ur bound to have a great long life...take good care of yourself..

lots of love,
divyya

[smiley]

:D Hi you young people am twice your age but your positive ~tude~ is great to see... hello Divyya in India.. I am in Dubai.. if we stretch real hard we could probably and shake hands.... keep smiling keep positive.. I have SLE.. hypothyroidism.. had 2 strokes.. but we are all here to suport each other...keep smiling all :D smiley xx

[Divyya]

hey smiley
keep it strong....keep the faith. uve had a hard time....but keep going strong abd keep in touch...i know soomeone in Dubai...actually..I have family there...i might be going to Dubai next month..if im there...I'de love to see you...but nothing's confirmed..depends on the progress of my hip...!!!...
U take good care of yourself..there's nothing u cant overcome..

lots of love.
divyya

[smiley]

:D great love to meetshould you come.... email is on this site..... be well sweetie... huggssssssss :D smiley xx

[Melody2]

Hi Divyya,

You asked if you're doing the wrong things by sharing the progression of your disease with your friends...my thoughts are absolutely not! If you have great friends who want to be there for you, you are very lucky. My parents are sort of like yours in that they would rather not too much discussion occur in front of other people regarding my health. But you know, sometimes I think it's some sort of bizarre propriety as if it's not really etiquette to discuss your health. So I do talk to my parents about my health if no one else is around, and yes, I am married to a wonderful man who supports me 100% which is a huge help! I don't really have friends I feel comfortable discussing in detail my health with...some just don't quite understand and others are afraid of it, afraid I may up and die on them (ha! again lack of info), and others I think don't think I really have that big of a problem because I look so healthy. But I believe that if people are willing to be there and support you then absolutely talk to them. I'm the type of friend who wants to hear what is bothering my friends so I can support them...it sounds like your friends are the same way. Having a connection and feeling like you have support is so key in keeping up mental health, not just when one suffers from a chronic disease. In fact at the lupus clinic I go to and was just at, the questionnaires on health they have patients fill out has a whole section on how supported we feel and do we have someone to talk to etc...it is SO important to maintain a positive attitude such as yourself. People can only give you the spiritual or otherwise care you need when they are informed. You are lucky to have such a great group of friends! On the flip side, you can gage whether or not someone really wants to hear in detail your issues and just sort of use that as a guide. I can tell when someone doesn't really want to know, so I just don't discuss things with that person. You come to know quickly who will be there for you and on what level. And don't forget there are all of us! :) But I agree, there should never be shame with a disease, it's not our fault and it doesn't make us any less of people, we just have a different struggle than someone else, but everyone has a struggle in life. Keep up your positive attitude! :) Life's too short to be upset about what hand we're dealt, there's only enough time play it! And, don't you agree it's easier when you're happy? :D

Melody :luck: :love:

[Divyya]

hey melody,


whew..thats real relief...i hadnt really talked to anyone about it..so im glad ive gotten a positive response about what im doing..
you know sometimes i forget how i take things for granted....i mean..having a great family and friends is a real blessing.....they really do look out for me and are realllly there for me..my best friends are from high school..so they're like always around..and now in colleg eeven though we're in seperate cities,if im feeling down and i call to talk..they're great..i have a hip problem..and i went clubbing last sat..and these guys wouldnt let me do anything im not supposed to...yknow...its really amazing..and one tend sto forget about it coz its taken for granted....and i love the pampering!!!!-ya..but i do remember...back in school..people didnt know why i had stopped turning up and why i was in hospital so much and why i had suddenly put on like 20 pounds and lost my hair...there were rumors about cancer and HIV and all sorts of things...lack of knowledge..and that wasnt easy..when people asked my friends about this stuff..they'de really get upset..and wouldnt tell me about it..i got to know about this like a couple of months back...and ur right..i dont like to talk to EVERYONE about it..i only talk to people who reallly have been through it with me..and held my hand through it,,coz they're the ones who really understand it...very few people do...but im really lucky...
Im glad u have a supportive husband....im sure it makes it alot easier on u...do u have any kids?-is it any harder...considering there are alot more responsibilties than at the age of 18...!!the way i see it...ur very very very positive..and thats truly amazing....and if u have someone to talk to then i guess its ok..coz as u said..all of need some form of support...when were u diagnosed? and how u doing now???do keep in touch...ur a very strong person..and keep it going strong..

luv,
divyya

[Divyya]

hey smiley,

if i come...ill definately come and visit u!!!!-YOU STAY WELL AND HAPPY!!!!-and call on me any time u need to talk!!!!!!-life's too short-LIVE IT.
keep the faith.

luv,
Divyya

[sherry_berry]

Hey i'm 14 and i suffer from sever joint pain and swelling i have looked at the symptoms of lupus and seem to have some of them i have been to doctors and they have done blood tests to see if i have arthiritis and i didnt i have been to 6 different ones and all of them say that they don't know whats wrong with me..none of them has thought to test me for lupus...if i did have lupus would it effect my tanning any?? because i tan everywhere except for where i have pain and swelling... does it effect your appearance any?? if it does..how?

[sherry_berry]

[FONT=Courier][SIZE=1][COLOR=green]
Hi my name is sherry and i am 14 i havent been diagnosed w/ lupus but i have some of the symptoms like joint pain and swelling i get tired if i am out in the sun alot also... and i dont tan where ever i have pain and swelling....i wake up stiff in the morning also...i've been to 6 diff docs and none of them no whats wrong w/ me it kind of scares me knowing that proffessional doctors have no clue about me. :o ...none of them tested me for lupus though...mom is gonna take me to the doc in august and tell them to test for it...i dont have any rash of any sort like sum ppl do...i would appriciate it if sum1 would write back telling me if it sounds like i have lupus....
luv always
sherry

everyone is always in my prayers

[rwb200]

You sound like a very intellegent yound lady and are handling it very well.
You have a great outlook that will be good for you in the long run.
Yes you will have times when you just want to cry and times that you need to let it out. If you need to do it because holding it back can be bad for you as well, but keeping a positive mental attitude and keeping strong and determined that this will not get you down is a great way of doing it.
All have to find what works best for them and it sounds like you have found yours.
GREAT

[Divyya]

hey rwb200
keeping strong is always good...but the support offered is always welocme and appreciated..sorry taken a while to reply...thank for ur support..

luv
divyya

[Mighty Oak]

Divyya,

You are a remarkably well-adjusted young woman. I think several of us, age notwithstanding, could learn a lot from your openness. As far as your parents not being comfortable with you discussing your lupus with others, is it possible that they're trying to protect you? Sometimes people can be a little distant if they feel like things are getting too intense. Perhaps your parents are worried that your friends cannot handle the reality of your condition. My symptoms are fairly moderate, but I can tell you there are a lot of people around me who are stunned to find out that I'm smiling through constant fatigue and pain. There's an old fable: A young boy, growing up, was told always to carry a pig on his shoulders. The pig would be his constant companion and he would be the pig's. So, he and the pig grew, the boy always carrying the pig. In adulthood, this pig weighed nearly 200 lbs. The boy, now a man, was finally asked by a visitor to the town, "isn't that pig heavy?" The man could only reply by saying, "I have carried him always... I do not notice his weight." It seemed to be a good analogy for people living with chronic illness. If the disease continues, and if you know what's happening with your body, it's easier to just say, "yes... I have to adjust my life for this, but it isn't likely to change so I must just carry on and be joyful."

You've really done well in deciding how you're going to work with your illness rather than try to bury or deny it. Keep talking to people. When you're feeling lousy, they'll be a great comfort. When you're feeling good, they'll be great company! You're wise beyond your years. Well done!

--Oak