Update : Hi all, hope you've had a lovely christmas... - LUPUS UK

LUPUS UK

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Update

Haylz2109 profile image
Haylz2109
β€’15 Replies

Hi all, hope you've had a lovely christmas and new year πŸ˜ŠπŸ’• Mine unfortunately was cut short by a drunk driver crashing into my new car that has now put me into a flare πŸ˜” (thankfully no one was injured or in my car at the time)

Just a little update for you all I'm still in limbo they put me back onto steroid injections last September with the idea of me then being placed onto Azathioprine whilst on steroids to give it chance to work however no one got in touch to sort out the Azathioprine even though I was told a cns nurse would be. They told me in December that would be my last injection which I then questioned due to not being on the new medication and finally had a phone call to say they are now giving me 2 more injections but still no update on the Azathioprine.

I've got an appointment with my rheumatologist this month which has been pulled forward for some reason, I just feel very stuck because I get told they are going to do these treatments and then it seems as if my rheumatologist or someone in that department drags things out which overall affects me more than anyone else as I got super nervous that I would be unmedicated again and after being on steroids for so long and feeling as "normal" as I can I really don't want to go backwards πŸ˜”

sorry for the rant/moan but thanks for listening πŸ’•

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Haylz2109
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15 Replies
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honeybug profile image
honeybug

Hi Haylz2109πŸ€—πŸŒΏπŸŒΈπŸ¦‹

OMGOODNESS love! I’m so sorry your car was damaged by that drunk driver, thank God you nor anyone else was in it. (My 18 yo niece was involved in a drunk driver’s accident in 1995…she was 18 and has been brain dead ever since). No wonder you flared.

You have a right to moan/rant given your challenge. I just said a special prayer for you. Hope everything works out for the best and you make a full recovery. Take care stay safe.

Abundant blessings. Love and prayers

EJ πŸ€—β€οΈπŸ₯°πŸ™πŸ•ŠοΈπŸŒΏπŸŒΈπŸ¦‹

Haylz2109 profile image
Haylz2109β€’ in reply tohoneybug

Thank you lovely, I am so grateful no one was injured during it. It's just caused so much more problems now than the person who did it even realises ! Oh I am so sorry to hear that πŸ˜” i will never understand why people do it when it's other people that usually get the worst end of things.

Thank you for your prayers i really appreciate that πŸ’• take care xx

honeybug profile image
honeybugβ€’ in reply toHaylz2109

you’re most welcome love. πŸ€—πŸ™πŸ•ŠοΈ

Haylz2109 profile image
Haylz2109β€’ in reply tohoneybug

Thank you πŸ’• xx

MusicalFurbaby profile image
MusicalFurbaby

So sorry to hear about your accident, flare and sense of β€˜stuckness’ at present! What a rough trot you’ve had. I hope you get some relief soon, either through the rheumy, injections, or as a matter of course. Hang in there, and feel free to moan any time you want!

Haylz2109 profile image
Haylz2109β€’ in reply toMusicalFurbaby

Thank you lovely, it just seems to be one thing after another. Between losing my job and now my car I'm hoping my bad luck has run it's course and hopefully this year I will be on better treatment and able to deal with things easier. Thank you for taking the time to respond πŸ’• xx

MusicalFurbaby profile image
MusicalFurbabyβ€’ in reply toHaylz2109

I’m so sorry. Keep treading water. I’m crossing my fingers and toes for you, that 2025 will indeed be better for you. Please keep us posted, especially on how your treatment goes, and feel free to β€˜moan’ here anytime! ✨🌻🌈

Haylz2109 profile image
Haylz2109β€’ in reply toMusicalFurbaby

Thank you lovely! Me too, I need all the luck i can get πŸ˜”. I appreciate that thank you πŸ’• xx

CecilyParsley profile image
CecilyParsley

Oh no Haylz so very sorry about your new car lovely. Thank goodness no one was injured. Can it be repaired or is it a right off?

I hope that you get your treatment sorted quickly and that the Aza works for you . Keep us updated xxx

Haylz2109 profile image
Haylz2109β€’ in reply toCecilyParsley

Thank you Cecily I am gutted to be honest it was the first car I actually bought from a dealer and spent ages finding it for it to be just right. No unfortunately it's a write off πŸ˜” just my luck after everything. Thank you I really hope things get sorted now, surely my bad luck has run it's course? 🀞🏻

Hope you're doing ok xx

CecilyParsley profile image
CecilyParsleyβ€’ in reply toHaylz2109

I feel for you. I once drove my brand new car into a parked van, bounced back hit the sea wall and had to be dragged out of my beautiful car which looked like a concertina. I was blinded by light of the sun on the sea and the van was double parked. I had whiplash, a badly bruised chest and the dashboard crumpled and cut my leg open but all I could do was cry for my beautiful car that I had had two weeks 😭. Hopefully the insurance will allow a replacement for you lovely. I look forward to hearing that you have a brand new gleaming car 🚘 xxx

Haylz2109 profile image
Haylz2109β€’ in reply toCecilyParsley

Oh jeez, I'm so sorry to hear that lovely. That sounds like a heck of a time you had there but totally understand the problem with sun and people being double parked wouldn't of helped. I know it sounds silly and it's just a car but it is a lifeline for me and makes me not need to rely on too many people (not that I have many that I could rely on) first car I properly treated myself too amid all the shit that happened last year with a previous car that was sold to me that never should of been and almost killed us twice I was just so happy. The make I got was a rare one too so probably no chance of getting the same again πŸ˜” hopefully I will have something similar though 🀞🏻 just very stressful at present xxx

CecilyParsley profile image
CecilyParsleyβ€’ in reply toHaylz2109

Of course it is stressful for you and I totally get the lifeline it gives you. I had to stop driving when my knee kept dislocating and it is frustrating that I sit at home so much now unless my husband or PA take me out because I cannot walk far..

I really hope that you are able to get the beautiful car you want Haylz. Start looking around now so that when the insurance pays out you can get it quickly. Keeping everything crossed for you lovely 🀞🏻xxx

Potatoheat profile image
Potatoheat

Sorry to hear about the crash, I get so so infuriated by irresponsible driving. So selfish. Hope it will be sorted soon. Stress causes flares so easily doesn't it ?I was on high dose steroids while waiting for Azathioprine to kick in , which it did. It's a long game but worth it in the end to get off the steroids. That was 18 years ago, only recently have I needed low dose steroids again. Takes a while but hang in there.

Haylz2109 profile image
Haylz2109β€’ in reply toPotatoheat

Thank you lovely, I don't think they realise the repercussions it's caused not just the fact of the car being written off which is my life line but the fact of putting me into a flare from the stress etc. It really does even though I'm on steroid injections I'm coming to the end of this dose and thought I'd of been ok but it came on so quickly after this all happened.

Thank you that's really good to know. I've been on steroid injections since September so I'm really hoping that once I trial the Azathioprine that it works for me 🀞🏻 I'm glad to hear it's helped you and you've only needed a small course of steroids since, thank you for taking the time to reply πŸ’• xx

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