Lupus and how it affects your life
Lisatho11987777
Scope Member Posts: 5,874 Championing
Hi my names is lisa and I have lupus I have had it since ivwas 18 but didn't get diagnosed until I was 36 but explained my health problems
When I was 18 I gave birth to my first child and thsts when I had health problem the first thing thst hsppend was my blood kept clotting and I kept hsvring mini strokes then I had a big stroke when I was 26
I had moved to Wales by then and I was lucky enough to have a doctor that thought he k ew what was wrong with me so I was referred to the Louise coote unit in St Thomas hospital London I spent 8 days there
I had heard of professor Hughes but I got to meet him whilst I was in the unit he had many tests done on me over the 8 days professor Hughes told me I had lupus I had to have fragmin injection for the rest of my life
My lupus does cause me many health problems I have brittle bones I have spondylitis in my spine I have a heart murmer I have a mild form of copd and I have arthritis in my fingers
I used to be in so much pain and couldn't walk properly and I was in a wheel chair for a short time until I went on a pain management course when I was 27 best thing I ever did I went back to work and my life got better
I do have bad days but in between hzvring hidden I have hD several jobs I have been a hairdresser I have worked for the DWP I have been on tribunal panels I have worked for tesco and I have worked in care and I have worked for boots pharmacy I wanted to work and thsts whst I did I faced slot of problems in my work places due to my lupus but I loved working
In 2003 I started my own independent voluntary advocate service that I still do and I have completed a law degree I have done talks around the country up until three years ago
Lupus has been the bug bear of my life but I have stayed positive and got through life and I have had children and been relatively happy
Has anyone else got lupus or knows some one else has got it I would like to hear about it because lupus didn't used to be widely known and that caused slot of problems also there is alot of variations of lupus that mimicks other conditions that makes it hard aswel fell free to adk me questions and comment I would like to know
When I was 18 I gave birth to my first child and thsts when I had health problem the first thing thst hsppend was my blood kept clotting and I kept hsvring mini strokes then I had a big stroke when I was 26
I had moved to Wales by then and I was lucky enough to have a doctor that thought he k ew what was wrong with me so I was referred to the Louise coote unit in St Thomas hospital London I spent 8 days there
I had heard of professor Hughes but I got to meet him whilst I was in the unit he had many tests done on me over the 8 days professor Hughes told me I had lupus I had to have fragmin injection for the rest of my life
My lupus does cause me many health problems I have brittle bones I have spondylitis in my spine I have a heart murmer I have a mild form of copd and I have arthritis in my fingers
I used to be in so much pain and couldn't walk properly and I was in a wheel chair for a short time until I went on a pain management course when I was 27 best thing I ever did I went back to work and my life got better
I do have bad days but in between hzvring hidden I have hD several jobs I have been a hairdresser I have worked for the DWP I have been on tribunal panels I have worked for tesco and I have worked in care and I have worked for boots pharmacy I wanted to work and thsts whst I did I faced slot of problems in my work places due to my lupus but I loved working
In 2003 I started my own independent voluntary advocate service that I still do and I have completed a law degree I have done talks around the country up until three years ago
Lupus has been the bug bear of my life but I have stayed positive and got through life and I have had children and been relatively happy
Has anyone else got lupus or knows some one else has got it I would like to hear about it because lupus didn't used to be widely known and that caused slot of problems also there is alot of variations of lupus that mimicks other conditions that makes it hard aswel fell free to adk me questions and comment I would like to know
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Comments
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I have noticed at the top it says 36 that is meant to be 26 sorry0
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Thank you for sharing your experience @lisathomas50 I do find it fascinating learning about various disabilities/illnesses/etc. I have heard of Lupus but don't know anything about it, is it mainly a pain-related condition?0
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Lupus can affect your vital organs can cause stroke and heart attack your immune system is low it does cause pain and there is some food or drink that can flare lupus up I cant take pain killers unless I resly have yo thsts why I did pain management
Lupus is complicated you never know what's goi g to happen next my teeth came out with my gums I get a butterfly rash but anti ageing cream helps with that my hair lost its colour when I was 20 thats only part of it
People I know when they first had it used to beg for remission lupus can do that I used to be the same its nice you have no symptoms sometimes up to three months maybe ilonger but by Christ when you come out of remission you know about when its ongoing you learn to live with it I know it sounds mad but I don't want to go into remission last time I cam out of it I couldnt move for a week
Thats why I wanted to fo this discussion one to help people understand it and two if someone else has got lupus its easier to find out fifferentvthingsv
I know years ago some people had a gold injection I never had that there are alot if variations of lupus I think I have 6 glad that you were interested and thank you for your comment and your question0 -
My eldest cousin had Systemic Lupus Erythematosus, which sadly wasn't realised until she was in the end stages of kidney failure. That was several decades ago, &, as with many disorders, more is thankfully known now.May I ask do you also have Osteogenesis imperfecta (O.I), as you mention brittle bones? I also have a genetic connective tissue disorder, which I found was associated with a neurological disorder (Chiari 1 Malformation) in a few, so wonder if you've been diagnosed with both Lupus & O.I.? Whilst Lupus can also be a genetic disorder, I haven't heard about it being associated with O.I., but would be very pleased to know more.May I also ask what type(s) of Lupus you have, if you don't mind me asking? Your mention of having 6 types has me puzzled.0
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Hi thank you for takeing the time to read my post I only have lupus
It is a complex condition and some people have symptoms that others don't have and some people have symptoms thst no one else has
Lupus is an autoimmune disease with variations I can explain how my lupus affects me but I couldnt tell you how others are affected by lupus because people have different symptoms which is why I started this post to see if any one else had it or knows of anyone
I am sorry that your cousin passed away when I went to St Thomas hospital to the Louise coote unit for 8 days inet three other girls I was 26 one was 22 and one was 20 we were all diagnosed with lupus but my friend who was 22 had been there a few days and she found out it had affected her brain she passed away whilst I was still in the hospital
My other friend her lupus had affected her bones and liver and she was havring gold injections for 6 months we stayed in touch for a few months and I used to see her at appointments until wales had a lupus unit she lost the use of her legs because of a variation of lupus I don't know ehstchsppend after thstc
My lupusbhad affected my bones and liver and I had antiphlofiside syndrome know as Hughes syndrome named after professor Hughes who at the time was running the Louise Cooper unit in St Thomas hospital London
I have a specialist who ttreats me at neath and port Talbot hospital I take fragmin injections to thin my blood I have brittle bones and arthritis in my hands and spondylitis in my spine I also have heart problems and a damaged liver and mild copd my lupus has slowed down but won't get better I have good days and bad days but I push myself snd I have always worked until this brcsuse I had corona virus
I have been told I have six variations but I get told its nothing to worry about at the moment once a year I have brain scans and mri scans and heart scans because of the corona virus has flared my lupus up snd not going out much is affecting my legs so I need to sort thst out I need to get back to work to keep me going if you have any more questions don't hesitate to ask
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Thstcis one of the variations i have0
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That is one of the variations I have0
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What i have posted is only general over all that can happen not all people have the same symptoms0
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Hope this helps explain there is lots of information on line about lupus I take five thousand units a day of fragmin I would of posted thst on here but wasn't sure if thst was allowed I had an eye operation recently as lupus affects the eyes aswel I have now been allowed to drive again and I have joined the job support with scope to get me back into work these are only a few of my symptoms I am happy to answer any more questions you may have0
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Thank you, my cousin & I were very close, & because of her I decided to learn more about Systemic Lupus Erythematosus.I hadn't heard of antiphospholipid/Hughes syndrome, but it seems you likely have secondary antiphospholipid syndrome associated with Lupus.Thank you for explaining more, tho I'm still unsure why you've been told you have 6 variations of Lupus. One is neonatal & another drug-induced, which doesn't seem to be the case, so leaves the 4 types of Lupus more commonly found.I'm pleased to learn you haven't got Osteogenesis imperfecta (brittle bone disease) rather ?osteoporosis, which I hope you find more reassuring, altho that comes with it's own problems, I know.You seem to have been most fortunate in your Drs, especially Prof. Hughes. It all must have been so difficult, & with your many pregnancies too. I'm pleased you're managing well now with regular monitoring. Should you wish, you might like to discuss with your specialists as to what type of Lupus you actually have. I always find that the more you know about your health condition the better, tho I know that's not for everybody.Thank you for discussing Lupus, as we often have discussions by people with different disorders on Scope (or by the Scope team), & raising awareness of these is very important.2
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Thank youv I only posted a few things as there re mountains of things I can post0
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All the above is what I get because I have lupus sle the variants I have are Hughes syndrome osteoporosis which is a form of brittle bones I have had lots of broken bones and hairline fractures neonatel and I csnt spell the other two but I lost my teeth and gums and my hair kept falling out thry are called variants becsuse I have lupus sle which stands on its own and the variants I have mentioned normaly stand on their own but I have them sswel but only parts of them thsts why they call them variants
Ots very complicated its taken me from 18 years old as it was always mentioned to understand and all the ins and outs which is why I used to give talks I thought that it would help proe if there was someone on here with lupus
I wrote a book called living eith lupus it went down well in America in the UK not so well it was when aids was first brought out which is also an autoimmune disease so people thought I had aids so alot of people don't share their condition
I have been called lupus dirty b told I had a gay disease an d shouldn't come near me and now prople go on at me saying there's nothing wring me but I grew a thick skin lol
I csnt explain it any better than I have today is one of my bad days but I survive lol0 -
I'm going to mention a few things here rather than takeover @RAwarrior 's thread, as part is relevant to this post. You mentioned there that, 'what happened was out of character, I went a bit far defending myself & for that I was sorry.' Also you seemed bothered by 'Poppy talking to me in a fashion & her mate interrogating me on my discussion.'I hope I may explain a little. My comment that I'd been here 16 months, whereas you'd only been here 2 weeks, was about the fact, which I mentioned, that I'd seen the benefit of Poppy's advice over & over again. Now before you think I'd just blindly follow someone's advice, a little about myself. Whilst I was sure Poppy's advice was sound, as I hoped to learn more about benefits, my way of learning was to follow the links that Poppy & members of the Scope team gave, as well as research myself.Now, with your post about Lupus, you did say 'feel free to ask me any questions.' I was very interested in you mentioning 'brittle bones,' purely as this is a genetic connective tissue disorder, as is mine (Ehlers-Danlos Syndrome). I found, as I mentioned, that a few with Ehlers-Danlos Syndrome also had neurological problems, so was interested that some with Osteogenesis imperfecta (brittle bones) might also have Lupus, & would have liked to know more. Sorry if this felt intrusive, or you thought I was 'interrogating' you.Osteoporosis isn't usually described as a form of 'brittle bones,' & I hoped to reassure you on that point. I also, as far as medical info goes, look at medical websites, research & more, especially about connective tissue disorders & neurological problems.I'm sorry about people misunderstanding about what is often perceived as an 'invisible disorder,' which sadly seems to often occur.May I also say that 'semantics' does not mean quibbling or petty, rather the meaning of words. Please do 'google' again to confirm. Hope that clears things up.0
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I said your interested in my post and that I was talking to poppy as I had been asked if I was ok I have two problems my phone puts things I don't want it to and I have to Foyle check but I also have sleep problems I was awake for two days and I havent checked but I just looked at what I put on the other thread and it doesn't say issy what you said0
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Thanks for posting this discussion @lisathomas50, it offers such an interesting insight into Lupus and your experiences.
Do you think that over the years you've grown used to managing it?0
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