Is this normal ?

[LauraMk30]

Hey all,

Quick one,

Is it normal to have a few layers of skin peel off around biopsy site?

It's literally raw.. I still have a bad infection...

?

Xx

[Suzym2u Moderator Vasculitis UK]

I would get it checked out just to be on the safe side.

[LauraMk30 in reply to Suzym2u]

Thank you Suzy, I'll get it checked again. 3rd time lucky x

[Honey46311]

Hi Laura. No it still looks infected. Looks like cellulitis to me (I had it twice in my lifetime and the second one is what triggered the underlying P.A.N. )Sometimes peeling will happen when edema (swelling ) goes down. But in your case it still looks infected in my experience as a Doctor in Occupational Therapy . Do you have a fever? Any diabetes? Right now your immune system will flare easily bcs you're not receiving treatment. I was started at first on 80mg of Prednisone for a few months before I started Cytoxan IV infusion (7).

[LauraMk30 in reply to Honey46311]

Hey honey, I had cold symptoms a few hours after my biopsy. I thought I had caught a bug on the train journey home. But started to feel worse, went to my GP she gave me some antibiotics.

All my antibiotics are in a suspension bottle. Not touching it... I don't have diabetes.

Yesterday I had an unexpected appointment that my doctor had ordered prior to being referred to Birmingham, I saw a rheumatologist & dermatologist yesterday morning.

10 min quick consultation & and as I'm being seen by a vasculitis specialist in QEBH he said he didn't really need to see me which is fair enough. So pointless appointment.

He Looked at my leg briefly said I need stitches out asap and yes i have an infection.

It only started peeling yesterday,

Today I've woke up with progressive flu like symptoms.

I had to dress it last night so I could sleep without it rubbing on the sheets, But looking at its oozed through the dressing!

No one as in (doctors) seem to care about it.

[ludo]

Yep get it checked out again Laura you may need an increase or IV antibiotics if it's developed into cellulitis.

[LauraMk30 in reply to ludo]

Hey Ludo thanks for your message.

I've just read up on cellulitis..

gosh I hope it's not that..

I feel like I've had 2 rounds with Mike Tyson & his tiger 🤧

[charlieab]

I know if it was me I would definately get it checked out ASAP. Just to be on teh safe side.

[LauraMk30 in reply to charlieab]

Hey charlieab,

The thing is I got it checked yesterday, agreed that it's a bad infection & take the full course of antibiotics.. which I am doing.. that's the 2nd opinion a 3rd won't cause any harm I suppose. Thank you Charlie for your commenting. More importantly How are you feeling today ?

[charlieab in reply to LauraMk30]

Hi Laura

Sorry about delay getting back. I went for an emergency hair cut. I decided that the consultants might listen more to someone whose face they could see! A vain hope (no pun intended)!

Hope the antibiotics are doing the trick? Your comment about Mike Tyson made me chuckle. Though Im not sure that he would have the courage to take on an autoimmine condition, even with a tiger at his side. Now Muhammed Ali would be a different matter. He showed great courage and heart in how he dealt with Parkinson's I think. Also, if not for the age and the Parkinson's, I think he would have been able to finish off Tyson in round 1. Not that Im a boxing fan, so Im not sure why Im whittering on about it.

Im doing OK thanks in the circs.

Look after your leg and hope you enjoy the rest of the weekend. Im looking at properties on the internet. I need to buy somewhere new having just got divorced. But dont seem to be able to afford what I want - a four bedroomluxury hoise on the beach in California with grey whales swimming past. So am looking at terrraced houses in Swansea Bay instead! Darn.

take care

R

[LauraMk30 in reply to charlieab]

Hey Charlie, no worries

A hair cut always make you feel a bit better. I hope The consultants know there stuff & help you, you deserve it after all you've gone & our going through! I'll say a prayer for you.

Antibiotics don't seem to working. There's not agreeing with my gut either so I can't win !

Trying my best to be " positive" bit difficult when I'm in so much pain! I don't have much luck, I thought to myself the other day that I can't have anything simple. If I get a tiny spot it will turn into an Abscess.. it's quite unfair.

Glad I made you chuckle.. that's always a positive "Muhammad Ali" for sure.. I don't know many people who suffer with an auto immune disease apart from myself & every one has there daggers out, & pitch forks when I'm around.. like I'm a witch of trial.. it's not a bad thing being a witch 🤗 lol

but if they could see life through my eyes they'd think again before judging me. I always say unless you have gone through something like this & suffered immensely , they have no right to assume that it's easy & just cuz I look ok doesn't mean I am... they have no idea !!

I hope you find a nice house !! I live in a grade II listed Georgian apartment, restored to its former glory, with a cute little garden area. I would do anything to live by the sea !!! Good luck on your search.

And yes I'm doing my best to look after my leg ! I'd saw it off if I had the guts but then again knowing my luck something would go wrong and I'd bleed to death !! I'm actually laughing out loud!

Funny 5 mins.

[charlieab in reply to LauraMk30]

hi Laura

Thanks. I hope they do know their stuff. I dont think Wales is particularly blessed with AI expertise but I think the guy Im going to see should be good.

Im sorry that the antibiotics dont seem to be working. Maybe they can try a different type? I dont really know much about antibiotics. And Im sorry to hear about the pain. Its horrid when it becomes a fairly constant comapnion. I know some people find those TENS machines work quite well. I think they use them in labour but also for chronic pain. I think it kind of distracts the brain from the pain.

Sorry to hear that some people round you are not being supportive. Its too true that ppl who have not been through AI problems tend to have little idea of how hard it can be and can be pretty unsympathetic. I know someone who has been diagnosed with a touch of TMJ jaw problem and was telling me aboit it. And I kind of thought I wish that was all I had. Though I didnt say that. Its kind of why I want to find a support group in RL.

Your house sounds great. I think I would foregoe living by the sea for a Georgian house. Though Georgian house by the sea would be nice. I saw a 5 bedroom house with a sea view (in the far distance) which was incredibly cheap but Im thinking there miust be some hidden problem like it was built on a disused mine and is beginning to sink. There are lots of old mine in the Swansea area I think.

Take. Best wishes

R

btw dont cut off your leg!

[LauraMk30 in reply to charlieab]

Hey Charlie, I love Wales ! We drove through Elan valley at sunset! Last year, It was the most beautiful place I've ever seen.. it was just me & my partner.., & silence. I literally filled up with tears! It was that beautiful ! Chilly in the valleys but the views were phenomenal! Breathtaking.

My best friend lives in Newport Gwent.

Love the accent too ! Aye boyo!

Sorry Im waffling on about Wales I'm across the pond but I like it there.. lol

Me & antibiotics don't mix well nowadays I was antibiotic resistant at Christmas, leading into the new year. A few infections at once. Led to me being on some seriously strong ones & having some major side effects., & they didn't work. I think I need IV antibiotic more than anything.

I have a tens, & did have one when I was pregnant with my son who's now 13 years old going on 30!

I think trying to distract myself from this hole in my leg is like waiting for a chocolate kettle to boil., Impossible but... I'm soldiering on as you do. Thanks for the tens advice.

I'm quite used to people around me being cruel.

I think my coping mechanism is disassociation. I guess I'm used to being the odd one out.

I guess I just am struggling a bit because this time last year I was the best version of myself ! I was happy, working, had all my friends & loved ones close, i had everything I could of wanted & more. i thought hitting 30 would be a new chapter I could finally get my wings & transform into a butterfly ! But it didn't go to plan & my gosh it's a never ending chapter now of illness, pain, grief, anger, frustration, loneliness, & uncertainty.

7 years ago I had this and I was so bad.. for months on end. No medical help, no treatment just antibibloodyotics & will power. I Had no other choice but to make myself better. & then it disappeared, took years to rebuild myself & at 30 all my hard work was taken away from me. & it's hard to accept.

I'm still me, but every time I look back at the pictures of my BIG 30th birthday party I break down, I'm trying to get back to being that girl. I want to be her !

I'll be turning 31 on the 24th July, & it just saddens me that I won't Be like I was, I'm different now, & I'll probably put on a brave face but everyone knows me for my dimples in my face.. I can't lie to save my life.

I've let my guards down as it was to exhausting keeping them up. Before I turned into the shadow of my former self.. I used to be proud, I never asked for help or for anything off anyone. I always did it my way. (Humming my way - Frank Sinatra)

But now I've taken the mask off & I bare all my flaws, and all my colours & some of the dark shades that I've hidden for so long.

I said to my dad Im only human, I bleed like everyone else, I'm not a clown for everyone's entertainment. Im trying my best to deal with this, & all the changes on the outside & on the in, I didn't & would never ever choose to be this way.. it chose me !! & I can't get rid of it as if it was a simple cold/virus/bug.. it's latched on & not letting go & no one understands what it's like & how horrible it feels to be weary alone & afraid..

I'm just me, I'm trying my best to rebuild from the pieces I have left, I think I'm doing well as I haven't had a nervous breakdown yet lol !

it's hard enough waking up everyday knowing I'm still in the labyrinth. I'm trying my best to find a way out.

I'm getting targeted in every direction.. on the inside & the out it's a battle I have yet to win,

what upsets me the most is that even my own body is against me. It's a lot to take in from last July to this one. Sigh!

I'm on a new path now, I'm not in total darkness, when vasculitis was mentioned to me at the ambulatory unit in Feb this year it was good news to my ears as I was so used to hearing nothing.. but at the time I didn't know a thing about it, & I didn't realise how horrible it is or how long it takes to be diagnosed or how many tests & procedures it takes to get an answer. & how toxic the treatment is.

& how there is no cure!!! That bit was hard to swallow !

I don't care how long it takes, my goal is to get my wings back.

I watched maleficent the other day & I felt like my wings had been clipped & I felt sad for her ! Fictional but in my reality it meant something..

I have TMD I wish that was all I had to..

A support group sounds good I NEED THAT !! 🤗 I hope you find one.

Most defiantly wow !! My home is my castle. And by the sea omg ! Lush!!!

That house you talk of sounds like a treasure !!

Please go and see it you may never know unless you see it with your own eyes. If it was built on a old mine then it's defo a no go. But a 5 bed with a sea view & a few holes here & there is worth a look..

Exciting!!

If I ever EVER probably NEVER but if I do win the lottery my first purchase will be an old abandoned french chateau!!

I would restore it, & live in a castle for the rest of my days. I've seen some beautiful restored ones that go for cheap & sell for millions !! Rare treasures are everywhere it's just like finding a diamond in the rough.

X

[charlieab in reply to LauraMk30]

Hi Laura

I will reply properly soon. My brain is a bit fogged atm and would only write nonsense.

But, in brief, 30 is still pretty young, and your diagnosis is pretty new. You seem like a strong person with a lot of spirit, humour and inteligence. You are going through one heck of a tough time atm and you are entitled to feel pissed off. We ahve all been hit by our own personal juggernaughts and are still lying in the road.

But Im fairly certain that you will rebuild a good life for yourself. In meantime, be kind to your self.

best wishes

R