Just diagnosed and super scared

I am 60 years old. I have always looked young and beautiful for my age. I attracted 29 and up men, and it was a boost to be beautiful and told so. I believe that I have had lupus. Long time, due to the discussion sores I had on my body and scalp for years. But about 4 years, my whole face, ears, nose, neck etc just had hell a sores and I had not been diagnosed yet. It did not last long, never knew what that was and life went on. For the most part my health up to now has been excellent dispite thinking I have had dormant lupus. A year and a half ago, think believe I had a stroke. All of a sudden my speech was slurred and I couldn't talk and was afraid to drive to the hospital but didn't think I was bad enough to call an ambulance. 6 days later, it subsided and I was OK. But the effects lasted 6 days, slurring... I never saw a Dr for that specifically, but have done the rounds in Dr offices and E.R. and nobody could figure out what was wrong. Someone recommended a Dr who recognized the symptoms and tested me. I had lupus. What is totally freaking me out right now is that, as I started to say, I was beautiful, and all of a sudden I am covered again with crusty sores everywhere including my face. About 25 of them, near my lip, chin, eyebrow, nose... Hell, everywhere. I look jacked up. I try and out makeup over it but it makes the cutest look just as awful. I live in Tulsa where people do a lot if meth, and people look at me like I am a meth head. I feel so humiliated I just want to hide, and if this is my quality of life honesty I pray to God I die in my sleep soon. I am full of fear because of the fast nature.. On July 6 I looked radiant. It is Nov 18 and I look like I am dying. It is not vanity you hear, Hut a mixture of embarrassment, shame and fear

29 Replies

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  • I have felt this way before. I will be 52 next month. And look much younger. I've been with lupus for 2 yrs now. The edges if my hair are gone. I have few bald spots. I'm glad I grew dreads cause they look nice and I don't notice the loss of hair. I suffer from depression and post traumatic stress disorder. What keeps me going is my 6 yr old. Don't know what I'd do without him. He is my sunshine after the storm. Please don't let lupus win. You are beautiful. Buy a nice wig and get a new hobbie. Keep smiling you're stronger than lupus. Once you start giving up you let lupus win

    Keep your head up you matter not lupus. Your life matters and beauty comes in many forms. God made you he loves you Just the way you are.

  • I agree. Denise.x

  • Your reply is true and very touching. It helps to know someone else is going through the same thing. I have ptsd and depression too and lupus. My anxiety is off the chart. I have been prescribed meds for irony two weeks ago, and I feel the effects. They make me feel really sick to my stomach and it is hard to keep up with the doses.. It occurred to me last night, as I was really upset about something and smoking out, that with lupus, if I don't calm myself down I will have another stroke. I seem to almost be having. Like a panic attack and just freak out.. For example, if I am left waiting in the car I just start feeling a little insane.. I had been assaulted so it may have something to do with that where I feel like a sitting duck and just want to go and if I can't I Freak OutThis is new to me and I have never gotten so emotional to this degree... I almost felt captive by my friend for leaving me there to wait..

  • Lol not smoking out, but freaking out 😖

  • Stay calm. Discuss your meds with your Dr I'm sure he can find other meds that work for you. Praying for you

  • Please think beyond beautiful. What you are inside is the most important.

  • Can I please just say - the signs of a stroke are NEVER "not bad enough to call am ambulance". Strokes can kill when not identified and best recovery comes when they are managed within 4 hours. And even thinking of driving is irresponsible as you could kill yourself or someone else if you blacked out at the wheel. And you don't KNOW it isn't a stroke but something else, better safe than sorry.

    But be honest: does it REALLY matter what people who don't know you think? I do understand how difficult it is to adjust to suddenly being ill and it is harder in some ways when you have visible signs, especially when you are part of certain societies. It will improve so be strong for now. This too shall pass...

  • Thank you because I know inner beauty matters of course, but the reality is outside dies matter.. In jobs, relationships. My physical change was so fast like, one week. I have had little time to adjust

  • In a way it is vanity ... Ive been through it and got the scars too ... Beauty fades for all of us and with Lupus it can come quicker .. But not all people have Lupus and can say they have been blessed with worldly beauty .. I thank God Im a live, for my childrens sake. I lost my hair, eyebrows and eyelashes, I could use makeup and had lesions all over me ... some have caused very bad scarring ... I ( my old self) did die ... when I realised that there were people worse off than me ... My hair grew and then fell out again, the process was constantly repeated over the years of living with Lupus ... the embarresment wasnt losing my looks ( upsetting yes) but it was having hair everywhere, blocking plug holes, in my food, over the floor, clogging the hoover etc .. Im not ashamed of who I am .. its other peoples problem if they have a problem with it as it just shows who they really are ... I used to be a Model in London ... yep I can seriously say I was vain .. What happened to me brought me down to reality and now I can honestly say there are other people who dont even taste what real beauty is .... because its who we are inside and how we are with others .. In the end its all in the Mindset and seeing life differently xxx

  • That was beautiful... Thank you for responding. You are a warrior

  • Hi I know exactly how you feel but it hit me after a got septicaemia at the age of 49 ! Looked like I was in my late 20's with the body to match I was cycling, abseiling, walking. Dancing the night away energy by the bucket full mother of 3 and my eldest looked like my eldest sister ! And that was a problem at times ! If I was out and a silly boy would try to be silly with me it was , " I am the mother of 3 and the eldest isn't much younger than you , I am flattered but No "

    I think a lot of us have similar tales , when I think we have lived with it dormant , I do believe as a child it showed itself with me , in the forms of rashes and fatigue at times but other than hair issues and a rather nasty rags after the birth of mt only son , and small bouts of fatigue for a period of 2 years after the birth of each child and then being told I had Post natal depression! Which I felt was rubbish I wasn't depressed just tired ! I was fine!

    Since septaciama I have put on 5 stone , I have sores , joint pain , fatigue, can't sleep , been told I have sjorgrens and fibromyalgia but I have liver , bowel ,bladder , spine , glands and the sores are so bad , and this all started at the ripe old age on 49 I am 54 now nearly 55 and my life has been stolen from me they are now talking POTs as well now , the list keeps growing, I take so many pills , it's ridiculous 11 for breakfast, 6 for lunch , and 9 at bed time !

    I am told things will level out , all I can say is at least I have 3 wonderful children who have been there for me especially the youngest ! I am waiting to take delivery of a wheelchair at the moment did try a scooter but my shoulders could not cope with the lack of support and my back /spine lack comfort!

    Hang on in there have you had counciling about what has happened to you! Have you been to a pain and fatigue clinic , and do you follow the spoons ! These things have helped me tremendously, I have had to except things are different, I have been lucky in many ways like you , but we have to except change and find our blessings from what we have had ! Being pretty or beautiful comes at a price sometimes and we are more than our shell , I would get quite cross as I have a mind it was a very good mind it worked well and I hated being seen for my looks and not my heart! and mind ! There is always so much more to us , I hope you find some way to cope with all this , perhaps another trip to your dr and open up to them and they can help support you , I don't know how long you have been living with all this but the one thing I can say to you the best advise I was given was " be kind and gentle with yourself "

    Gentle hugs

    Shadow xx

  • I know we are all going through a lot, together in different t places. I feel like I have been sick for years as I had the same sores n the same place on my bottom for years, fatigue, depression.

    Give thanks. At least I got diagnosed.

    A month ago, one day I had the flu, lupus kicken, and fell awful.

    Suddenly someone who had robbed me jumped me again in a corner store a black from my house, and beat me. I had a broken nose bruises all over. I was too sick to fight. He tried a block down the road to have two girls pull me from my car in traffic. I go to court for the restraining order on him and just am stressing. I am going to try and move to settle my life down.

    Sorry to go off subject, just needed to tell someone.

  • I meant a block... The reason I shared this is that this incident could be contributing to anxiety and stress which has me in overload...

    I will slow down, breathe ray and give thanks for all that I have.

    One time after two years of a pinched nerve it suddenly went away.

    The same God that made me will watch over me.

  • My apologies to the group. It's been a long time since I have been in group and I realize that I got waaay off subject and should have just told you guys that I was stressing and it was adding to the flare up

  • I don't think you need to apologise to the group - you didn't get way off subject, you have been letting out, to people who DO understand what illness does to our bodies and who have found ways to adjust. This is always a "new normal" when you have a chronic illness: losing the old normal is a bereavement and you have at some point to grieve for it and reset. If you can get it, counselling may be a great help.

    "Spoons" were mentioned. Have a read:

    butyoudontlooksick.com/arti...

  • I have just re read it is early days for you ! You have a lot to come to terms with , give it time , ask for the help and you will get it ! You are aloud to be angry but don't let it consume you ! You are and we're more than you're beauty ! And that will come again , stop pushing yourself you have to learn to except now ! And that's not easy , just take it a day at a time , things will come good not like they were but different , you will make new friends truer friends you will find , your beauty will come back and you will become radiant again but in a different way , I lost my hair it shirvaled up before my eyes it was probably the scariest thing to happen as it was in a matter of days if not hours , it is now coming back lots of tests we are all different with our list of conditions but ! Have faith and ask for help it probably won't come from where you expect it to either , please take care , and one day or even one hour at a time ,

    Hugs

    Shadow

    Xx

  • Thank you for all you said. And taking the time to write.

    Right now you guys are the only support I have..

  • Your very welcome , try and take things one day at a time , and one thing , and rest , rest as much as you can be kind to yourself , that was the first bit of advise I was given by my doctor, and that's what I do now , today I have had a bed day , just stayed sung and warm , it is stormy here and bitterly cold !

    Gentle hugs

    Chris X

  • Yes.. I think I need a day like that too... I am going to see a specialist soon and hopefully get on the right track.. Stay cozy today :)

  • 😘

  • I'm 63 and have Lupus and like you fairly good looking, but now loosing a vast amount of hair and yes it has aged me the looks are going. My attitude is like those of others I refuse to allow illness to define who I am. So my hair is falling out, so what, so I look a bit rough who cares. I find growing older despite bad health, hair falling out, aching joints etc a challenge exciting even and one I try and meet head on despite days when I am really fatigued etc. I actually enjoy growing older, no longer care much about what people I don't know think. I found reaching 60 a change occurred in me and one for the better I felt instantly more in charge of my life, more confident, I now say what I think, I'm me, and enjoy my life as much as I can.

    Don't let your illness define who you are, as looks go as they will for all if us, try and embrace growing older, it's a new chapter in your life not the end.

    Good luck.

  • Wow you hit the nail on the head... It is. More a combination of growing old and being sick. What an intersection to be at. But as you say. Acceptance is a huge part of it. I'm trying, but with a lot of anxiety lately sometimes it is overwhelming and I'm having a hard time seeing it could get better.. Blessings,

    Becca

  • I'm actually 65 now but look a lot younger. I went to the hairdresser yesterday (Saturday) to have my hair washed and treated and was shocked at the amount that was coming out but when I looked at the from it was awful as it was all gone.

    I took a wig for the hairdresser to fit and it looks wonderful and on my way home I decided that it might even be best to have the rest of my hair cut of because it would save me worrying about washing it as it's so difficult to do.

    In 2006 I was diagnosed with lupus after years of feeling I was an hypochondriac by others especially some of my GPs. 2007 I was told it has damaged my lungs but God is my strength who I lean on each day.

    I"m just thankful and grateful for my life and that I can breathe each day (mostly with ambulatory oxygen).

    Thursday I went to my GP because iv'e been coughing a lot and the first thing she said was you look so well (but of course she knows my diagnosis).

    Please stay strong don't let lupus win.

    Praying for strength, that a cure will be found soon and peace.

    God bless

    lots of love and gentle hugs.

    Maureen xx🙏🏽💐

  • Thank you so much. I have been praying a lot. I plan on getting counseling and changing my environment as I think the stress maybe doing more than lupus itself I like how you fixed your hair situation.

    I guess I need to adopt an attitude of flexibility and adapting...

    I am. Just scared and not thinking straight

  • I think you should present your ' embarrassment, shame and fear' to a trusted doctor who will look and listen and treat you appropriately.

    We can all look beautiful in our own way. Ill health doesn't preclude this.

    🤗

    PM

    🐳🐬🐳

  • ....and I am 60 as well. I mostly feel pleased that I am alive despite struggling on a daily basis. You feel down and you are probably in shock. Step back and reevaluate where you are at in your life right now. Do some positive thinking 💭 let yourself feel sad but then see if you can change the direction of your thinking and forge on.

    Bless

    PM

    🐚

  • Thank you. I'm overwhelmed over it all but you guys help a lot.

  • Hi beccaboom,

    I'm sorry to hear that you are struggling with your symptoms so much right now. Following your diagnosis of lupus, were your started on any treatments to help relieve your symptoms?

    We have a booklet about skin involvement in lupus which you may find helpful. You can read and download it at lupusuk.org.uk/wp-content/u...

    We also have a blog article about skin camouflage which may be of interest to you - lupusuk.org.uk/skin-camoufl...

  • Thank you. I will read both.. I am on meds and just started but given by a GP

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