Hi Kamora,
That's all i use on my lips is vaseline when they get very bad but try to apply it out of the small flat tins you can buy as when i've used the sticks in the past they've caused me to have sores on my lips.
Love Terri xxx
kam0ra said:
i have been using vasiline and it protects my lips from being touched by anything. but i might try they honey and vitamin e. thanks
yeah im scared of any lip balms as they might burn especially if its medicated so vasiline in the little jar applied like 50 times a day as i keep licking it off. lol and i use a q-tip to apply it because my hands are not soft enough.
Hi Terri!
Wow - your hubby sounds like a gem - you best hold on to him! I have made an amazing discovery - IT'S NOT MY FAULT! I have discovered that my husband is an insecure SOB! For instance - the past 2 nights (all of a sudden) he has decided that he doesn't know how to work the remotes on ourTV - last night when I went to show him how to use it - duh! he got up, went to the bedroom and locked the door on me! Then he had the nerve to come in to the guest bedroom where I was and tried to force himself on me (supposedly trying to "defuse" me). He is and has been an extremely insecure individual and I have realized that it's not me - it's him and his inability to deal with being wrong or not knowing everything! I always thought he was joking when he would say "I'm about as close to perfect as you can get" but now I know this isproblem that he has. Tonight he had the balls to ask me if we were going to discuss my "episode" from last night. This is his way of not accepting that he has the problem - NOT ME! He says he doesn't want to deal with my episodes any more and I said FINE! So, after 39 years - maybe it's over? I think I'd rather be alone than deal with this..........................
Tez_20 said:
Hi Beverly,
My hubby stuck a gazebo up this year for me to sit under...no sun blaring on me mate and the temp was just right for my raynauds...but winter is pulling in here now loads of rain and i've been dithering for several nights so the rads have gone on now.
I'll right them down for next year if we have any summer and thanks for the advice beverly but i will say this which i've noticed alot with Lupus it does'nt matter how much we use stuff and protect ourselves...Lupus still finds a way of making we suffer.
Takecare it easy Beverly..allmy love Terri :)
Beverly L. said:Hi Tez, i know exactly what you mean about staying out of the sun with the rash -smile but like i mentioned to kamora, those products in my response to her they have really helped me . And am totally happy now that people don't stir and asking what's going on with my face . Try them for at least 3-4 months and see if they work for you , talk with you later .....Beverly L.
loriken214 said:Bless your hearts! I am learning a lot about the rashes here and I pray that they find some relief for you as soon as possible!
My butterfly rash is chronic and I've had it for nine years. It doesn't itch or peel, but I can tell when it is brighter some days because it feels like I'm sunburned from the inside out. There isn't anything I can do for it except stay out of the sun as much as possible.
Love and hugs,
Lori
wow jan im so sorry that you have to deal with that! ive only been with my boyfriend for almost 8 years now nothin close to the years of commitment to yours but in my experience you can do bad all by yourself and if your not helping each other your hurting each other. my boyfriend is my backbone and im his we have our problems just like everyone else too though. its 50/50 and with all the things in life going on there is no need to be stuck with someone who doesnt make you happy that they are there with you through it all: good, bad,boring, scary, fun and loving moments in life. im not trying to sound like a love guru or anything but being happy alone is better then being misserable or angry anytime.
Guess I need to figure out what I need to do. I'm not saying that it's bad all the time - in fact when it's good - it's really really good and I couldn't imagine life without him but when it's bad - it's really bad and it's bad more than it's good anymore.
Hello kamora,
I'm the same keep having to apply it because the sjogrens is destroying me, it's drying my skin up, my mouths dry besides my lips...christ we are in a mess mate.lol
Have sores though doers'nt help and what your doing is helping it besides no germs passing to your lips either. :)
kam0ra said:
yeah im scared of any lip balms as they might burn especially if its medicated so vasiline in the little jar applied like 50 times a day as i keep licking it off. lol and i use a q-tip to apply it because my hands are not soft enough.
Hello Jan,
Best hold onto him...i'm surprised we're still together the verbal he takes off me with my temper besides all my issues...yet he still stands by me.
My god mate he's been very childish i said this before...do you know what is game is and some people can be like this being man or woman because your ill, instead of standing by you he's actually seeking attention sorry to say this but that's the lowest any one can go.
For one he's being disrespectful on your behalf on how you not well and whatever he's doing he likes to throw the blame at you, he's not excepting issues especially where he's conerned...he's also a mind player by the sounds of it and as had you fooled for years and because you not well now he's palying with you...i told you when we first spoke it was'nt you.
Jan it's hard to comment in one way on someone elses marriage of 39yrs but i was married before ste and it lasted nearly 2yrs and my seizures and paralasis was really bad then, the seizures have only slowed through being highly drugged...he would'nt help me when i came out of a seizures, he mentally and physically abused me, god the things which went on was unbelieveable the police lived more at my property than the station and to top the lot i was only 31, he went with a woman nearly 60 and talked about me and he admitted it, so i divorced him in 6mths and 5mths later i met ste but he mentally messed me up badly...when there was times i need him and support and got none...worst thing i did marrying him.
If he's refusing to help your situations you have with the lupus, then if it was me i'd say BYE....you don't need what he's doing ontop of coping what's coming at you besides...as it will mentally mess your head up.
I'm here for you anytime Jan...love Terri xxx
Kam0ra
Just wanted to check on you this morning to see how you are doing? Hoping your doing a little better!
Deenie
well thats great because im an extreme germ-a-phobe.
Tez_20 said:
Hello kamora,
I'm the same keep having to apply it because the sjogrens is destroying me, it's drying my skin up, my mouths dry besides my lips...christ we are in a mess mate.lol
Have sores though doers'nt help and what your doing is helping it besides no germs passing to your lips either. :)
kam0ra said:yeah im scared of any lip balms as they might burn especially if its medicated so vasiline in the little jar applied like 50 times a day as i keep licking it off. lol and i use a q-tip to apply it because my hands are not soft enough.
im doing good. went to social security this morning and left unseen but thats not unusual around here got to make another appointment but im doing good otherwise.
Dewing3569 said:
Kam0ra
Just wanted to check on you this morning to see how you are doing? Hoping your doing a little better!
Deenie
Thanks so much Terri. I felt really bad about how I was on here whining and complaining about my marriage - this is a site to talk about Lupus and other diseases so I apologize to everyone. We did manage to finally talk today - we just move forward like we always do. Sometimes it just seems so bad and you're right, the Lupus does make us not handle/deal with things the way we used to.
Love to everyone!
Tez_20 said:
Hello Jan,
Best hold onto him...i'm surprised we're still together the verbal he takes off me with my temper besides all my issues...yet he still stands by me.
My god mate he's been very childish i said this before...do you know what is game is and some people can be like this being man or woman because your ill, instead of standing by you he's actually seeking attention sorry to say this but that's the lowest any one can go.
For one he's being disrespectful on your behalf on how you not well and whatever he's doing he likes to throw the blame at you, he's not excepting issues especially where he's conerned...he's also a mind player by the sounds of it and as had you fooled for years and because you not well now he's palying with you...i told you when we first spoke it was'nt you.
Jan it's hard to comment in one way on someone elses marriage of 39yrs but i was married before ste and it lasted nearly 2yrs and my seizures and paralasis was really bad then, the seizures have only slowed through being highly drugged...he would'nt help me when i came out of a seizures, he mentally and physically abused me, god the things which went on was unbelieveable the police lived more at my property than the station and to top the lot i was only 31, he went with a woman nearly 60 and talked about me and he admitted it, so i divorced him in 6mths and 5mths later i met ste but he mentally messed me up badly...when there was times i need him and support and got none...worst thing i did marrying him.
If he's refusing to help your situations you have with the lupus, then if it was me i'd say BYE....you don't need what he's doing ontop of coping what's coming at you besides...as it will mentally mess your head up.
I'm here for you anytime Jan...love Terri xxx
Hi Jan,
Don't get apologising as you was'nt whining you was expressing yourself, we all do it and it's best to get it out because holding it in won't help plus your not the only one in this situation who have come on threads and opened up and i don't thin kamora is going to hold it against you...we all try to help one another best possible.
The sites not only just about Lupus and other autoimmune Diseases, it covers all issues that's why i opened up about my ex, so i mays well be apologising the same.
I'm pleased you've managed to speak and i just hope your hubby manages to sort his issues out and gives you all the support you need because a marriage of 39yrs is brilliant over here in the uk.
All my love to you Terri xxx
yeah dont apologize for anything support is support weather lupus or not sometimes you just got to vent and get it out to feel better and think more clearly about the situation.
"Thank you" Kamora...it's lovely when member's understand.
Hugs Terri xxx
kam0ra said:
yeah dont apologize for anything support is support weather lupus or not sometimes you just got to vent and get it out to feel better and think more clearly about the situation.
no problem we are all human even though there are some of us who think they are superior ( i think thats how you spell it) but i like to help people when they just want to vent or need someone to listen.
Hello Kamora,
Your right concerning your comment and superior is correct also.
How you feeling today with your rash, Look at this pic anything like yours?
Love & Kisses Terri xxx
im feeling good today had to work 11 hrs today. but i only work 2 days a week until the disability and stuff kicks in. and the rash is getting lighter by the day. i stopped using the creams because i think thats what made my hands and feet burn and itch like they were. no more since ive stopped using them. i might have been allergic to them. but no i dont think this looks like mine, its too "defined"where as mine kinda blends.
My Dear Jan! My heart goes out to you....I went through something similar with my first husband. He was emotionally void and cold as ice with me when I got sick. He would do nothing to help me when I in dire need and he was very selfish...he referred to everything we had as "his" not "ours." It made me worse and I almost had a nervous breakdown on top of being physically sick. After 10 1/2 years of marriage, I couldn't stand it any longer. He actually called my bluff and asked me if I wanted a divorce...my reply was "now that you mention it, YES!" and we separated then and there. Turns out that he had cosigned a car for a woman he worked with while we were separated and he still owes me $100 towards the divorce. He was all about bills and money...every single day of my life started with his bitching about bills and money. My health was much more important than putting up with this selfish JERK.
I pray that your husband will come around and realize how important you are to him and he will learn to deal with the changes in your health. YOU are what is most important and the idea that he tried to force himself on you worries me BIG TIME! Don't let him near you if he acts like that again!
Love and hugs,
Lori
Jan said:
Guess I need to figure out what I need to do. I'm not saying that it's bad all the time - in fact when it's good - it's really really good and I couldn't imagine life without him but when it's bad - it's really bad and it's bad more than it's good anymore.
Hello Kamora,
That picture is to do with Dermatitis...well at least we're all covering some issues and only you know as you've got it but if yours is carming down the steriod cream could have possibly been causing it...because i was on them for a while and always had a 6mths break but the last time which was last year i was in a mess my skin burnt as soon as i added it, just like someone was burning my skin with an iron and my Dermo soon had me off them and told me...when it gets to that state your skins gone past all treatment with creams and because my rheumo would'nt help he take a last resort med called Dapsone...which is a dangerous drug, caused my organs to swell and i went yellow and he soon had me off it as it's for DLE/SLE and now i'm just pleased the new rheumo is helping.
I really hope your disabiltiy comes through but just don't get working yourself to death even though it's only 2 days...i hope your weekends been pleasant mate.
All my love Terri xxx
kam0ra said:
im feeling good today had to work 11 hrs today. but i only work 2 days a week until the disability and stuff kicks in. and the rash is getting lighter by the day. i stopped using the creams because i think thats what made my hands and feet burn and itch like they were. no more since ive stopped using them. i might have been allergic to them. but no i dont think this looks like mine, its too "defined"where as mine kinda blends.
I have the same rash. None of the creams help me. They inject mine with Kenalog and I am on Plaquenil and now Cellcept (just increased to 1000mgs). This rash started on the V of my chest about 20 months ago and the way they had to get rid of that one was to surgically remove. I know how you feel about all the info saying they don't itch but my dermo says "yes they do"
Don't give up! Keep on truckin' it will get better.
May GOD Bless You
Zipperhead