View Full Version : Hi
04-11-2008, 09:49 AM
I just recently found out i have lupus (in january), even though i knew it was a possibility, finding out has been a huge shock for me, especially the more i read about it! My university has been really good, especially with a recent flare up, and letting me take time off when i need it, today has been completely horrific for me though, as i went to get my eyebrows waxed and the beauty therapist refused to do it because of the way my face looked, i was mortified and it really didnt help that i am really self concious about my face at the moment, i sat in uni this week trying to constantly hide my face! Anyone have any tips for dealing witheveryday life or trying to combine studies and havign lupus>
04-11-2008, 09:56 AM
im new too.....what symptoms have you had?..ive just been tested today..so gota wait a week for results.....its the ulcers at back of my throat and dry mouth thats playing me up today...and my arms and leags feel like lead...im so tired all the time....michelle
04-11-2008, 10:01 AM
Heya, i get loads of nasty mouth ulcers, i get super bad joint pain, there are somedays that i can barely walk, my skin gets affected, at the moment i have the typical lupus rash with small blisters on my face, Ive had a few seizures at times and my kidneys arent right either!
How about you>
04-11-2008, 10:07 AM
Welcome to the forum...
Sorry about the waxing. Was it at a beauty school or a salon. How does your face look? Some dermatologist offices perform waxing, maybe check it out. They would be more reliable as if they can or can't do a waxing.
Does the pain from ripping the hair our aggravate the rash, is it malar rash? Are you in the midst of a flare?
And don't hide your face from people, just hide it from the sun. Do you wear makeup? Would you be willingly to wear makeup to make yourself feel better? I can give you tips on how to cover it up a bit. Is it dry, scaly, red, shiny? Just on your cheeks and nose...
Many people here have tips on school and living with Lupus combines..Like Kate (Crushing Pretty) Saysusie, our Admin and moderator. Gee my little tired mind can't think of all. But they can give you tips on financial help and etc..
Don't let the rash take your confidence away...Sit proud, talk and walk with your head held up high and if people do notice the rash, trust me it is for a second or two.
Sometimes if we just say were are having allergic reaction, that will keep inquiring minds at bay. Or make a joke about it, Pardon my face, but I am having an allergic reaction...
And stress, we can't "stress" it enough..stop it. It only aggravates the Lupus...
Heres a big hug...and remember walk tall with the grace of a woman and you'll do just fine..
04-11-2008, 10:21 AM
yeah it was at a salon, i didnt mind as much that they couldnt do it, it was the fact the young girl was just looking at me in disgust! At the moment my rash is just on my nose and cheeks with a few tiny blisters emerging, it is indeed a malar rash and i am in the middle of a flare! the waxing doesnt usually agrevate it but at the moment its a lot worse than its ever been, ive been trying to avoid wearing makeup at the moment because anything i put on seems to hurt at the moment! I do try and hide it from the sun, though i sometime forget to put on the sun factor, uni has loads of those light tubes as well which im sure doesnt help matters! Yeah im trying not to stress, unfortunatly the one big are i do stress about is my academic work, i always stress about getting good grades and then if im not well i stress about not getting good grades, but im under strict orders to just scrape a pass this year! I have to say i have awesome tutors and friends at uni, my personal tutor even researched about lupus so that she would know how best to support me and stuff!
04-11-2008, 10:25 AM
Hi Ruthie; Welcome to our family. I noticed that you mentioned that your university was being really good about letting you take time off. Do you work for the university or are you a student? If you are a student, it might be helpful for you to contact your "Disabled Student's Union". They will offer note takers for those days that you cannot attend classes, they will offer help with professors, tests, parking etc., so that you can continue your education without undue stress and with as much assistance as possible (as Oluwa mentioned, stress is one of our wost enemies).
If you are an employee, ask them about their services for disabled employees. Often, since they offer services for students, they also offer services for employees. Do not let the name "Disabled" scare you away or make you start thinking of yourself differently. Getting help from them does not categorize you.
If your employer needs help in understanding how they can assist you, contact "Americans With Disablilities Act" - www.ada.gov. There is a wealth of information on their website, for employees and employers, that offers advice on how to accommodate employees with any kind of limitations.
I am glad that you found us, everyone here is very helpful, kind and supportive. Again.....welcome!
Peace and Blessings
04-11-2008, 10:30 AM
hi again ruthie....well hun where do i start ..lol....today i have muscle aches and pains...the ends of my fingers are cold but palms sweaty?? how do you work that out?..my face is red and blotchy across the nose and cheeks and feels sort of tight...if that makes sense...i have a terrible thirst cant quench it...and have tiny ulcers right at the back of my throat..near the dangly bit...under my belly button is a red raised itchy rash that i want to tear to pieces and my head feels muzzy...feel like i want to keep squinting......i feel like a hypocondriact...lol...im being tested for sjgrens and crest syndrome as well as fibromyalgia...i already have hashimotos thtroiditis....
04-11-2008, 10:46 AM
yeah i am a student studying youth and community work, its like my dream job! In my uni we have a Disabled Students Services and then with inthe students union itself we have a disabled students officer, though the position is currently vacant! I havnt actually told my employers about the lupus as im a bit fearful over what the reactions will be! My mum has been asking me if i want to come home for a bit as i have been feeling so awful, but ive said once i get my presentations over and done with i will consider it, especially my group presentation, we are looking at getting me a new place to live as where im currently living is a 2nd floor apartment and it has no lift access and sometimes my joints get so sore i cant get down or up!
Oluwa mentioned about makeup to cover the rash does anyone have any ideas on what i can use?
04-11-2008, 11:06 AM
I know what you mean that is the perfect description on how my right arm feels like"lead" or a "dead" feeling ...Its good to know im not alone........
04-11-2008, 11:43 AM
I have The Malar Rash..I call it the diaper rash.
I've tried everything that is out there..from high end department stores to Walgreens by they usually aggravate my face
I use Cetaphil liquid soap, comes in a bar...or Johnson's Gentle all purpose cleanser.
Lotion.... I use L'Oreal active moisture Lotion with SPF 15.
Makeup. I use to use Bare Minerals..aka colorescience, but it made my face look dried and wrinkling like Easter crepe paper.
Now, I dust my cheeks and nose very lightly with quick strokes with a mint green powder by Physicians Formula. Always tap your dusting brush before applying so you don't get a patch of color.. Green, It covers the red tone. Found at any drug store..comes in a cream or powder.
Then for base I use Maybelline Pure Makeup in a green tube..I opt for a lighter color that matches my neck or the inside wrist. I use it along my jawline and underneath my eyes mostly then I use it all over. Next, I apply Revlon ColorStay with SoftFlex and SPF 6 For combination/oily skin a shade darker then my skin...on my nose, cheeks and middle or sides of forehead... Using two different shades on the areas I mentioned make makeup look more natural....
I use rogue on the sides of my cheek bone and not on my rosey rash front spots. I used a light pinky and it blends into the slightly pink after its been covered diaper rash...
Key with makeup..start light..and add light to acheive the look you want...
Hope this helps..
04-11-2008, 04:01 PM
Welcome to the forum. I am sorry you are struggling with this and trying to get through school at the same time. You have already received such great advice - please reduce your stress if you can. Give yourself permission to rest when you need to do so. You will feel much better when you allow yourself to slow down.
You did not mention if you are on any drugs, such as Plaquenil. This can help with the rashes, the mouth sores, the fatigue. You might ask your doctor about it the next time you go.
Glad to have you on the forum. Take care and be well.
04-11-2008, 05:06 PM
Welcome to the group, Ruthie. There are members here from all over, with every symptom, and in circumstances that are much like yours. I know you'll get lots of great advice. You've already gotten some: avoid stress, stay out of the sun, get lots of sleep...... Stop by for a 'chat' whenever you need someone to lean on - or just to share a story. Everyone here is so helpful, I know you'll be glad you did!
04-11-2008, 05:09 PM
Your doctor should be able to give you a cream that will help with the rash. It might take some trial and error to get the right one.
I have several different types of skin issues so I have a cream for each one of them.
As it was mentioned...stay out of the sun. That almost sounds like sun blisters. I get those very quickly. Just 5 minutes of direct sun light is enough to make me blister. OUCH
I hug the shadows. Sometimes folks will make fun of me for sticking to the shade...I tell them to go ahead and sunbath...I'm working on my palor :) I want to see just how white I can get :) Save on my power bill cause I'll glow at night and light my own way :)
05-21-2008, 06:24 PM
The site was down for a few weeks, wondering if you got lost in the shuffle. Hoping you have this thread tagged for a email reminder...
How's the diaper face rash....finding anything good to cover it...do tell if you found a secret..
Did you find that first floor apartment...
Thinking of you and wondering how you are...