View Full Version : Just saying hi!
04-14-2009, 07:11 AM
Hi, Hazel here and i'm a 17yr old female from australia. I was diagnosed with SLE about 2 months ago now.
For me, Lupus affects only my skin so apperenltly im lucky.
I thought i would give these online forums a go because my family and friends are starting to get annoyed with me talking about it. Atleast everyone is here for the same reason.
Currently im on prednisone, plaquenil and another one but i cant remeber :wideeyed:
I just wanted to know how people have had to change their diets. I have beeen eating heaps and gaining alot of weigt but im not sure if i need to see a specialist to get me on a particualr eating programme or anything like that......
Well, thats all for now but hopefully you will all see me hanging around here!
04-14-2009, 08:44 AM
hey just wanted to say welcome.....
04-14-2009, 11:47 AM
Hi Hazel and WELCOME!!!! Sorry you have the official diagnosis. :wacko:You came to the right place for support and to vent any and all your feelings and thoughts! We wont get sick of hearing you talk about it, we tend to do that too! LOL Its nice because WE DO UNDERSTAND so it makes it that much more comfortable to talk away no matter what the topic! Im glad to hear you are just having the skin problems, well, dont get me wrong, thats ENOUGH to be annoying cuz i have those too along with pretty much EVERY other symptom!:skeptical: The LESS symptoms you have the BETTER and HAPPIER i am for you,none of its fun but we just do what we can, right!
When i saw you were from Australia i got a smile on my face cuz my daughter came home the other day from work telling me how "hot this guy is who is a regular customer" because he is from Australia and he has the "sexiest accent" she said. LOL She said she gets all excited when she sees him come in cuz she likes to hear him talk! TOO FUNNY! So i guess what im saying Hazel is you have a sexy accent! LOL:laugh: I think its great you came hear with a question about your diet. Its nice to hear that you're trying to take charge of whats in your control with this illness. GOod for you! I can only tell you what i know works for me and it seems to be what some others on this forum have said too. I try to eat as many organic foods as i can. The more pure it is the better. I eat tons of fresh fruits, veges and only Whole Grains. You have to be alert to the fact though that you might not do well with gluten in your diet. That can flare some people. Anything with caffein is BAD! I flare from coffe, tea or chocolate. I take 2 capsules a day of my Omega3 fish oil and 1 capsule a day of flaxseed oil. If you have the rashes on your face take an antihistimine for the itch and i know this sounds silly but i put Crisco around my eyes when i get the rash there to help keep it moist. Hospitals even use it for skin conditions in their patients! It helps the redness and the dryness. ANY foods with too many ingredients in it are BAD. The less ingredients the better. That means its more closely to its "natural" state, less processed and less artificial ingredients. I dont know if you do but EXERCISE daily because it will help you mentally,emotionally and physically! Glad you're here and i wish you the best!:wub:
04-14-2009, 12:42 PM
Hi happy your here!!!:yes: I never get tried of hearing about.:spinny: Because I've learned so much, listening to others.:laugh: We need the support too!!!:fam21:
04-14-2009, 12:47 PM
Sorry to hear about your diagnosis but happy to hear it only affects your skin which is a lot for a 17 year old girl to deal with and I can only imagine how difficult it is to deal with around friends/peers/boys/a boy you may be interested in. KEEP Your head up and know that you are amongst friends on this site. I just joined April 11th and already I have learned and enjoy the feed back I receive from this site. I understand how you feel about talking amongst your family and it makes you feel like you have to shut down because your family and friends who don't have it give the same generic answer or support and sometimes you just want them to really understand and comprehend what your life is like living with Lupus…I know I do!
I too am on both medications you mentioned. What I do know is that prednisone gives the sensation of starving…at least it did for me. I could be eating and still feel like I am starving so I had to put my mind in check with my stomach/body and ignore this sensation. I actually lost 30 plus pounds by drinking more thank 2 liters of water a day, lots of fruit, low sodium/no salt (YES BORING & TASTELESS) and fish, chicken, turkey only. I rarely indulge in sweets and I have cut all processed meats/food and anything artificial. Until this goes into remission this is the diet I have to follow and will follow as I have flare ups that attack my joints and they are extremely painful. So to avoid being in pain I eat to live and don't live to eat.
Also, I wear a sunvisor and sunblock if I go out into the sun to protect my skin.
I hope this has been helpful…
Welcome Again Hazel!
04-14-2009, 02:10 PM
Hello and Welcome Hazel!
You've been greeted by and seen how kind and informative our members are. Yes, you are amongst people who understand you and who will never get tired of you talking about how this disease affects you. We are here for you whenever you need us!
Peace and Blessings
04-14-2009, 02:48 PM
hi again Hazel,
I responded to your post in Lauri's Lounge, but wanted to say welcome once more.
There are several members who have a lot of skin involvement with lupus, and i am sure they will give you very specific informtion that will help deal with these issues. You have already been given very good advice about living with lupus, not letting it totally determine your life.
I would like to add sun/ultra violet rays. It is so important to protect yourself. Wear high spf sun block, wear protective clothing, and wear a hat and sun glasses. these uv rays will cause a flare after just a few minutes of exposure. So, be cautious even when shopping, etc.
And yes, we never get tired of listening....cause we all get our turn at venting.
04-14-2009, 04:23 PM
Hi Hazel and welcome. You ask away we are here for you always. If one doesnt have the answer, someone will come along and help you.
love n hugs
04-15-2009, 12:10 AM
Thanks everyone for your support. One things for sure is that i have to sort out my diet. When i got sick before i was diagnosed i lost aroung 8kgs in a week. This was really scary because i dropped to 36kgs. I have since put all that weight back on but i look terrible. I'm skinny in the face but round at the stomch. I guess it will even out but i look terribly out of proportion. i was in the sun for quite a little bit today, i went to the royal easter show which was fun and great to do something a normal teenager would do. I wore heaps of sunscreen and a hat and i only have a mild headache at the moment. This is a huge improvement for me so i am in a great mood at the moment even though im really tired.
My mum has booked me a visit to the dietician (?spelling) so that should be helpful. I am looking forward to that.
04-15-2009, 09:48 AM
I am glad that you were able to enjoy an outing in the sun without extreme side effects. It is important to slather on the sunscreen, wear protective clothing as well as a hat and sunglasses.
I hope you get your weight sorted out, working with a dietitian will probably be a great help!
I wish you the very best:yes:
Peace and Blessings
04-15-2009, 10:33 AM
Hello Hazel... :wavey:
Just wanted to say welcome and glad you joined us. You're right about family and friends...others....not always the most supportive when you want to talk about this illness. Sickness and the details that go with it are not easy for most people to talk about or want to hear about....it has a way of making people uncomfortable and unsure what to say to make you feel better. Now you've found a great place to come where you will be understood, not by a few, but all of us here. And we're here for you to share what you need to say, ask your questions, or sometimes just feel angry or frustrated with what you have to go through. We help encourage and lift each other up, when it's needed and help each other through the rough parts.
I can hear how much joy that outing brought you. The desire to be 'just a normal teenager' is a part of life every one of us goes through, so we all understand when we read your words. I'm really glad you got to do it. Grab on to those moments whenever they happen and make good memories for yourself.
You've already been given some great advice from others about eating healthy...and I'm certain the dietician will be an excellent resource to help you get going in the right direction.
We have a few other teenagers on the site...like Ashleybaby715...who are very fun and encourage us with their positive attitudes. I'm sure they'll be along soon to say hi.
Take care....hope your day is a good one!
04-15-2009, 03:03 PM
im ashley! im sixteen years old, and have recently been diagnosed with SLE as well [[as of january 12th, 2009]]
i figured i would say hello and we could exchange our stories and such!
so feel free to message me on my page, and we can talk!
its always good to talk to people around the same age as me about this! especially someone who understands first hand !
so just message me whenever you get the chance!
05-22-2009, 05:13 AM
hi hazel glad to hear you had good day at easter show i to am from australia and also from sydney so i know what the heat is like here i just came back from queensland and had to take precautions i understand how overwhelming it can be i to am on prednisone and plaquenil i am also putting on wait and bloating sorry but this is just part of the side affects try to drink plenty of water and avoid fatty foods and salt eat plenty fruit and vegetables even though i have teenager daughter myself and considerably older if you need to talk i will be here on the website for you the people here have got me through some really badtimes it is good to talk to people who understand what your going through and can offer you the advice you need i wish the best hazel and enjoy everyday as it comes.
05-22-2009, 12:53 PM
Just saying hi Hazel n Kim and hope you both have had a good day.xxxxxxxx