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· Loopy dimples :0)
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Discussion Starter · #1 ·
Im relly sorrythat thisis going to b a very depressing ltter but i jus carnt o this any more.Im 20 now and have had lupus since i was 9 and its the worse its ever beeni carnt wal more than 10 steps itht stopping my hir is falling out my hands are peeling and hurt so bad i fnd it hard to do my job i carnt even hold things because its lie they are burnt ande hospital is ding nothing for me! i dont know wot it is or why its happening! im so depressed i cant cope...i break down at every little thing nim getting to angry at my self because i carn even open oors or even brush my own hair!!:sad:
myface is ful of the rash n is so dry i carnt put any make up on to cover it!
it seems like i onl com on ee wen im really bad but i find this is te ony pace can tlk to anyone coz at work pl r sick of me moaning and my family are 2 but tey dont understand tht im in pain 24/7 .
my lips have had cuts on them since b4 christmas n it wont go it hurts an crackseveytime i wake up!
im getting the thing i have on my hads on my feet now n it feels like im walkin in bare feet on stones it s tht bad!
sorry for moning on bt i need help n advice about work and if anyoe is on disability benifit nd if anyone is on incapasitybenifit ( carnt spell lol) because i think i cart work anymore even my doc has tol me he dunt want me workin n he is mad i still am but i have to live n pay bills......anyhelp would b sooooo helpful and i thankyou soooo much
love to u all liss xxx
 

· florie
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315 Posts
Liss_66,

I am so sorry you are going threw all this. It sounds so painful and i can understand your frustration. It sounds like the stress from it all is adding to your condition. Since your doc said he didn't want you to work can you get a note and take a temporary leave of abscence?

I don't know where you live. But i would appy for social security disability. See if your doc will work with you. Also have you gotten any couseling? I know here if you have any kind of mental distress with on going illness you can get disability. If you have worked the amounted time for full disability that would help pay your bills and give you a monthly check and food stamps.
If you do not have enough work hours to claim full disability then you can apply for social security income SSI. you should look into a social security lawyer for disability to fight for you. I feel you need to get help and stop working. You have been diagnoised with Lupus since you were nine years old,so i am sure you have lots of doctors for referrals.
Do what you need to do for yourself,for noone is going to do it for you. It's lots of paper work but at the end it will be worth it. Please hang in there and let us know what your decision is. Please take care of yourself. We all care and understand your situation.
Hope this has helped in some way. Hugs , Florie
 

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God bless you, Liss. Lupus is bad enough but Lupus at such a young age and with such terrible symptoms is just this side of absurd. I sincerely hope you will find some relief. We have all gone through our own ghastly experiences with autoimmune disease but, one day at a time, life can still be good.
Please write to the forum a lot so we can at least feel that we are supporting you.
Douglas+
 

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(((((((Liss)))))))

Im so sorry to hear how bad things have gotten for you. :worried: Are you still not taking your medication? I remember you said before that you had stopped all your medication and had begun to feel better. I know how hard it is to think that we need certain medications but your Lupus seems to be way out of control right now and I really think its time to re-think the meds. Are you on any meds right now?

Do you see a Dermatologist for your skin problems? If you dont, ask your doctor for an urgent referral to one. They can help with the skin problems. It sounds very painful :hugbetter:

You asked about advice on disability benefits. I think you are from the UK? Here is a site which a member posted about recently and it seems really useful in helping to make application for these benefits. Im not from the UK myself and I know other members will be along soon who might give you more specific advice so keep checking back. Its late in the UK now and there should be some more people on tomorrow.

http://www.benefitsandwork.co.uk/

Im glad your doctor will support you in your application as this is very important.

It must be hard being so young and having to deal with all this stuff but Lupus flares can be brought under control with the right treatment Liss.

Take good care and many hugs to you
Joan:rose:
 

· The Other Illinois Tammy
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1,193 Posts
liss,
I am sorry you are feeling so bad, but you have to focus on something good and getting better. If the hospital is not doing very much for you than maybe you shoule start looking for someone that will help you with getting somethings under control. There are some lip bombs that can help with the cuts on your lips or plain vasilen will help also. There are some medicines that can help with pain, ask your doctors about getting on some to help. I wish I could help more, just don't give up on yourself because sometimes that is all you have is you. We are here if you need us.
 

· Moderator
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hello

Hi Liss, just wanted to send a hug to you over the web! Your post touched a cord with me, I remember vividly not being able to brush hair, wash in the shower, walk down the stairs etc etc without weeping in pain and my heart goes out to you. Please try and make some order of the symptoms, put the most difficult one for you at the top etc, then what possible solutions may be found for each one. Take that list to the Drs, book a long enough appointment and ask for his help and advice on each point... also review your medication and refer you back to the Rheumy urgently. I think you should also try and get some time off to deal with all these issues as they will take alot of your energy. The worst feeling in the world is hopelessness, it renders us very vunerable and gives alot of heartache. Try and take a little control back by getting help to deal with your issues in whatever form will work for you. I will be thinking of you, be in contact soon. :worried:
XClaire
 

· Manca
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5 Posts
Dear Liss,

I'm really sorry for the pain that you are going through. I'm young too (21) and I know that sometimes is really hard being so ill at this young age. Although... don't give up. Maybe it will be better after time. Maybe there are some really beautiful things that will happen to you, you never know. When I'm down, I read this:

Cause sometimes you just feel tired.
You feel weak and when you feel weak you feel like you wanna just give up.
But you gotta search within you, you gotta find that inner strength
and just pull that **** out of you and get that motivation to not give up
and not be a quitter, no matter how bad you wanna just fall flat on your face and collapse.

While there's a life, there's a hope. Big big hugh***

Manca
 

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Dear Liss,
I am sorry you feel so down. I am in the UK and claim Disability Living Allowance. Working is leaving you with no life whatsoever. Don't despair though it may well be possible to work again later when your illness is better controlled.

If you are in the UK and you can find a good Welfare Rights Advisor to support you with form filling etc. it would take some of the burden from you. I am sure your family love you but just don't know what to do. Family members can be so thoughtless!
x Lola
 

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I know exactly how you feel. I was diagnosed in Dec 2008 but have had Lupus for 4 years and without treatment. My face is full of the crusty hard rash and my hair falss out even if I don't touch it!!! I discovered that stress was the main factor. I am now on anti-depressants and use Advantan Milk on my skin and you won't believe what wonders it does..... Hope this helps :wink2:
 

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Hi Liss,

I don't know what to advise as I don't know what your skin problem actually or what treatment you are on for it but I CAN relate to the fingers and feet problem.

My fingers 'flared up' a few weeks ago - I don't know what it is but am seeing the Dermatologist next week so hopefuylly will find out and get some proper treatment.

My GP thought it was a fungal infection and gave me a mild steroid cream but I KNOW that is not what it is - the cream helped very slightly but is not getting rid of it - It is also on my feet and I have to say, the pain in my fingers was excrutiating!!!!!!! - they were cracking, peeling and bleeding and I could't use my hands hardly at all. - Just getting my socks on took about 10 minutes, using a couple of my fingers like' hooks' - getting the rest of me dressed took forever!!!!!

I also had my arms and legs 'flare' - deep purple, thickened flaking skin which would crack open and bleed if I 'dared' to try and move!! - I have been given some new cream for this which has really helped but the major thing I am doing at the moment to keep things under control until I see the Dermatologist is REALLY helping.

Are you still using soaps for washing? - Strangely, getting water on the skin dries it. - Using soaps dries it even more!! - I was frightened to go in the shower as it made everything worse.

At the moment, I am soaking in the bath twice a day (extremely boring!!), but NOT using any soaps. - There is an emollient lotion called Oilatum which you can buy in the UK (are you in the U.K.?), or you can get it on prescription. - I put 3 capfuls in a warm bath, twice per day and just lie and soak, then put on all my various creams in various places. - This has an amazing effect on my skin!! - It doesn't cure things on it's own, but really helps sooth and stop the skin from drying.

You can also use it in place of soap throughout the day. Perhaps this would help just a little?

I hope this may help,

Dea x
 

· Loopy dimples :0)
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Discussion Starter · #12 ·
Hi every1 well it's now been 3 years since I wrote this and even tho I did read all your lovely replys I was just so ill and in hospital and forgot to reply , I still have all these problems but I have had to finally leave work :0( but I hung on in there till the very end, I also do have some fantastic news I now have a 18 month old son and was very well while pregnant .. Not so well now lol doing it all on my own tho so I have to drag my loopy body outa bed everyday even tho I'm not well :0) I just wanted to thank you all for your amazing support and posts ,and I wanted to shout out that I DID IT !! And Ian still doing it and I will defeat this illness ... And so can all of you :0D much love fromone loopy to another xxx
 

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Hi Liss

I am so sorry to hear of you very bad time and at such a young age. We all understand so keep posting for support. Take one day at a time. I agree with the others look into all the benefits you can have. If you are in the UK go to the job centre and they can give you all the DLA (disability living allowance) forms. Ask them to fill them in with you if your hands are in pain. You can also apply for housing benefit, ring the council and ask them to send you forms. Take time out and work again when you are up to it. Have you got a hobby/interest that you could turn into a job and work from home in the future. People without lupus do not understand as they can only think sick then better. They do not understand how you can be so different each day, lupus is fickle. Has your dr referred you to your rheumy recently. Maybe they need to adjust your medication.

Good Luck and keep us posted.
Hugs, Alexia
 

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Hi Liss

Just saw your post. Many congratulations on having your son, that is great. Enjoy him and keep strong - fight all that lupus throws at us.

Hugs
Alexia
 

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Hi Liss...me again!!!!!!!!!! So lovely to read your post you have made my morning.. big Congrats to becoming a mum, you have been busy!!!! Take care and look after yourself as well as your family XX
 

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Thank you so much for writing back and updating us with such great news! Congrats on your little boy... and congrats to you for continuing to live your life to it's fullest. Undoubtedly, you will have helped someone else see that things can get better, and there is light at the end of even the longest/darkest tunnel we can find ourselves in while living with lupus.
 

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Hello Liss,

I am sorry that you are feeling so much pain and I just wish that I can be there to hug you. I can relate to the feeling that you think no one wants to listen when you whine and vent out anymore, I kinda feel the same thing. I think that when I say what I feel, it relieves me emotionally. well, there's no limit to how many threads you can post here and you can vent out anything that you are feeling, may it be a symptom or a depressing feeling, the advantage is there are a lot of people who can relate with you and could give you pretty good advices. Another thing is prayer, prayer helps Liss..never give up, keep on fighting for yourself and for the people who loves you.

Wish that everything gets better..
 

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Welcome back Liss!

Congrats on your new baby! I bet he gives you the motivation to make it through the tough times when they arise now. Good to hear that you were well during pregnancy. What a blessing.

Please come back for any support you might need. It was great to hear your good news.

Monica
 
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