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LUPUS UK
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Bringing out the truth

Hi everyone,

My sister told me that she read somewhere that this disease brings things into perspective. I’m still waiting for that to happen. I’ve gotten so many gray hairs ever since the diagnosis and so many broken capillaries and redness everywhere. I’m very pale as it is and they are very visible. I don’t know if it’s because of the medication or what. This of course shouldn’t matter, considering... but they make me feel so ugly and old and useless. I never realised I was so vain. Am I alone in feeling this way?

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👋 Great to hear from you Lili18! 😘 It can take a while, gaining perspective: there was a good thread about it being like a grieving process after diagnosis. Three years on, I was still taken aback to be offered a pneumoccocal vaccine last week...but hey 'life is not a dress rehearsal - play on!' I find I have added drive to do the things I want to do! 🤸‍♂️😎🧗‍♀️🌄

My grey hair was the chance to change my hair colour from mouse brown (I'm thinking of copper henna next! )

The pros here will be able to help with broken capillaries. It's not vanity, we just have to adjust to a new 'normal' very quickly and the brain takes a while to catch up! Are you still on Pred?

Be well, 💪 mo xxx

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Hi eekt

Thanks for your fast reply. I’m still here, just not posting a lot, trying to be better. You are right, it is like a grieving process. I forget sometimes and then i remember, and it’s shocking how much it hurts again. I feel like a baby who needs constant mothering, it’s horrible.

You sound like a very positive and fun person, that’s a wonderful trait, especially in this situation. Great for you and everyone around you. I wish I was more like that and not have my negativity and guilt rubbing off on everyone around me, especially my kids. Vicious cycle. Anyways, I’m trying, hopefully it’s just taking me longer to come to terms with this.

You are right, we have to adjust to a new “normal”. I love the copper henna idea, the color of a fighter, sounds just right for you :) Ive wanted to dye my hair red for ages now, just never came around to it. Now with the hair fall, i will have to wait for it to come back first.

Yes, Im still on Pred, 20 mg. Are pred and hydroxy the drugs that we’ll always be on? The dreaded moonface. Do you know is the gray hair due to medication, because I had none before? I was just wondering

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I hope you're getting lots of tight squidgy hugs Lili! 😗 Guilt?!? What guilt? If you have any negative feelings (and guilt shouldn't be amongst them) - there's a fabulous post reply from Honeybug on this, near the bottom: healthunlocked.com/lupusuk/... - write them down, stick them in your sock drawer for a bit till they're gone from your mind, then burn them. Gone!

You could start by combing copper henna cream through your hair a little bit at a time, that'll cover the new growth (mine's white) and help with condition.

Grey hair could be from lack of vitamin B12, zinc or ferritin - great posts on that a couple of days ago: healthunlocked.com/lupusuk/... - so that's something your GP could test for.

The baby-dose Hydroxy I take bleaches my hair a little 🤔🤗😁. I don't know what effect Pred might have on hair.

The Pred will be tapered down to the minimum dose to prevent flaring. Hydroxy is recommended to be dropped to 200mg/day once stable remission is achieved: it helps reduce the chance of flares.

Thanks for the kind comments! 🙌😊😻... though my GP called me a glass-half-empty kind of person 👀 ...he gets a lot of things wrong! Expect more replies tomorrow after the daily digest comes out...it seems to be going to spam folders at the mo! Stay strong! mo xxx

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Meant to link honeybug 😍 😘 xxx

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Thanks again, eekt, for tips and the links too. You are a big help to me. Your stickers always make me smile :)

I actually wondered how your GP could possibly call you a glass-half-empty kind of person! He’s so wrong it’s funny

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He's a 🤠 🤡 😂! x

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oh and follow Barnclown 🌟💫🏆 for AMAzing tips on dealing with doctors, current research, life and everything good! 🎯😍

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No you're not alone Lili, far from it. I was losing some hair before diagnosis, dark circles under my eyes, depression, pale complexion and feeling so alone and unwanted. I just wanted to go to sleep and not wake up. Since treatment my hairs thinned but its stopped coming out and the dark circles remain, the depression comes and goes. I've felt very ugly at times, its a daily battle. As for perspective, for me it was accepting I have health problems and coming to terms with it. I've had to learn to stop fighting it all xxx

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It seems to me that people say that a lot when one has a serious illness...the comments and cards that I got from well meaning people when I was Dx'd with bc 13 years ago were outrageous in my opinion... like now you can appreciate what you have...WHAT?? I always appreciated my family...or just think of it as a "boob Job" when I was having reconstruction..the list of well meaning garbage is just that..well meaning yet insensitive ...So I do NOT think that for most of us, we really do not "need" Lupus to bring things in prospective....Xx

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Hi Leslie,

I thought about what you said and I think I understand you. I suppose it all depends on how you see things in general, what your stance is towards yourself and this illness. Prior to diagnosis, i only had an inkling of what Lupus is. I cannot expect others, especially those who do not have it, to understand it or me, how i feel about it or this anger that i have about it. I was actually told that I now have a reason to be spoiled. Funny. Anyways, i would rather chose to see the comments as attempts to help me, because they care enough for me, rather than them being insensitive. Realistically, only we know how it really feels.

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I agree with your last comment although I do know just what Leslie means too. I have found that a leg or arm in a cast attracts more sympathy than any connective tissue disease will because seeing will always be believing - only exception apparently being cancer or heart attack.

I don’t actually know what I would have said it done if a friend or family member had told me that they had Sjögren’s or Lupus - having genuinely never heard of either before they directly affected me. I knew about RA because it affected my former neighbour who finally died of related severe lung complications. So when I was initially misdiagnosed with RA I went into a deep state of gloom and doom - imagining I would end up like her with mangled hands and legs etc. But hers began long before Methotrexate or others were available.

And then if i had been correctly diagnosed with Sjögren’s plus I probably would have assumed, as many do, that it was just dry eyes and mouth and i could still be high seeded tennis player if I wanted to - which luckily wasn’t ever an ambition of mine!

I only really wanted to say that I too am very fair skinned and have many new burst capilliaries and strange looking nails. I showed my rheum who said it could be my CTD but it could also just be age related sun damage etc due to having such fair, translucent skin. Personally I think it’s small vessel Vasculitis related but then I am inclined to relate a lot of symptoms and signs to my autoimmunity because I don’t like to concede much to the ageing process even at 55! 🤔😏

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Yes..I was referring to my breast cancer comments from well meaning peeps...

Lupus is a different ball game...but I was Dx'd last year..at 62..my rheumy told me that since I am an old white female I am likely not to have systemic issues...But as I read here, my heart aches for all who are going through Autoimmune disease hell..and probably fear....The young mothers..people who are older and were Dx'd at a younger age....My Symptoms were pretty rough..I HATE the fatigue, but my skin has cleared my joints don't scream at me so even though I feel guilty and like a drag, I am also grateful that I am an old white female....when Fatigue takes over..every day at some point, I feel like I am dying....and I think I don't know how much longer I can do this Lupus (life time) gig Xx

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Hi Lili..I hope I didn't sound ungrateful for people reaching out to me( 13 years ago with bc)..I was in a different place, SCARED to DEATH....and sometimes what people said..meaning well..just plain scared me...it got to the point where I would open the card and just looked at who sent it to me..because that was all that really mattered,that they cared enough to reach out to me....Lupus..this is totally different for me...I am not afraid or overly sensitive....I am VERY fatigued mostly, and I feel like a drag..but I am not afraid..I think that my friends just think..oh bummer, but they are not grappling for the "right" thing to say.... Xx

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