I got used to not talking to people about it. when my eyes both turned black, I said I was in a car accident because people could process that information faster and easier, than trying to explain some bizarre, unknown disease to them. the reaction others project will not be very helpful all the time, and sometimes most of the time. autoimmunes have to get used to that. the doctors used to think we are making it up, and so do some laymen that hear our stories. they are just too unbelievable. meanwhile, there is about 50% maintenance that you can do for yourself. first of all, Lupus LOVES LOVES LOVES negative feelings. feeds off of it like sharks, so don't give it the opportunity. what I found to be very powerful online were guided meditations aimed at self healing, and positive healing and positive self talk (etc etc etc) there are endless meditations online. rearrange your lifestyle. you may have some stressful 'triggers' that you perpetuate and maybe looking at these things and eliminating them would be good therapy in the long run. im a 25 year vet, spent the first 20 years with natural remedies, but lupus got me in the end when I lived thru 3 tragedies. like I said, lupus loves misery. just get rid of the misery. strict diet I used was the 'eat right for your blood type' diet I found very useful. I still use it even tho I depend on meds now too. pay attention to allergies, these are always ''triggers''. hope this helps, I personally depend on these little tid bits. I got most of my information researching other cases. that's why I love these blogs now. when I first got lupus there were no computers, just libraries. now information is at your fingertips. Lupus is for life, its terminal, so don't try to get rid of it, try to manage it. yoga and light weight strengthening is a MUST! good luck, and good health!
Lupus LOVES stress, rearrange your life to knock ... - LUPUS UK
Brilliant-thanks so much for your post. I am a relatively new Lupus 'manager'-in fact I am probable Lupus-but what you say resonates so much. I am doing Pilates and Body Balance and yesterday tried Yoga for the first time- all three help and so does walking. yep stress is now my enemy and relaxation on the daily 'diet' as well as the cocktail of drugs of course. I am yet to try changing my diet-but will give anything a go that others say helps. Personal research( www is a godsend) is on going and my daughter is considering doing her university dissertation about Lupus snd exercise. I really hope she does. Good health to you and of course good luck. x
'Lupus is terminal'. Really? That's a statement that is unsubstantiated and could really upset people who are new to their diagnosis.
ya I know hurdles, diseases need to be accepted at certain points and that acceptance comes at the pace of the individual. but its more useful to get past that hurdle, and get on with self care and managing outside help than being victimized by fear and confusion. its not just lupus, every disease carries this liability. im not saying you HAVE TO, im just suggesting that when I figured out the difference (and there were more than one level to that) that I became more emotionally stronger and more able to care for myself and understand doctors. ie: less stress.
When I was diagnosed in 2005 the one thing the hospital doctor told me was that it NOT life threatening. I feel fortunate that my SLE is mild and wont kill me. I agree with Clare that we have to be careful what we say as some will indeed be frightened by it
I agree with you Marie that stress and negativity makes things worse, I've found that out for myself, but we're individuals and what works for one may not work for another
I know what you are saying. I didn't say it was 'life threating'. I said it was terminal. its stays with you and has the potential to grow into a monster, and yes, many have died from the complications the inflammation has yielded, heart, lung, blood clot, kidney failure, and of course the list goes on. some end up in a wheel chair from being crippled. It will ruin you emotionally first, so there's that to consider. without your mind, your life is compromised. on dialysis, your life is compromised. on a list for a new kidney your life is compromised.
the doctors wont tell you this, but then again, how many of those doctors have suffered with lupus for many years. I was going to be a doctor when lupus struck me. my studies eventually ended, I had to learn about this disease from another angle.
To clarify, lupus is not terminal. This is incorrect information. It is only fatal in a very small number of cases. With treatment, most are able to manage their condition.
Yes. That is a negative statement and in itself can cause more problems for Lupies.
Positive thinking is the only way plus using all the other approaches.
Being in nature - my garden or a walk in the country/hugging a tree or on the moorland helps me - fresh-air in my lungs, a walk on the beach, etc.
We have come too far from nature - that is the big problem for us - we are babes of the universal energies!
Thank you for sharing Marie, as i have been trying natural treatments for 3 yrs now. I seem to be getting worse. I am trying to remain calm. I was able to walk yesterday, but today was exhausted and had to take a 2 hr nap before dinner.
I have not been able to do yoga because it hurts my muscles, and is very hard work. Would you recommend to push through it? My muscles are weak and i have trouble getting up the stairs. I use to work out a lot when i was younger. And my breathing is difficult from time to time. Never know when its going to hit me.
Hard to get through the misery with so many problems, financial, struggling daughter, husband in distress too physically.
A lot of people recommend meditation. I may look into that. Didnt help when i was young, but maybe now is time.
meditation (especially the health guided and emotional guided online), yoga, palates, floor exercises with light weights, lovely walks, fresh air, time to yourself, knowing when to say no, and take time for yourself - all sounds like a princess' lifestyle. well it works for lupus too lupus is odd, its like that guy that wants to help you when youre upset, but tips everything over in a china shop trying to do it. when you are emotionally upset and distracted, lupus jumps in to save the day. except, it doesn't save the day and lupus, having no eyes or ears, doesn't really 'get' this. put lupus in an office somewhere in your body and give it something to do while you avoid sending many signals down for its help. feedng it some medication will keep it relaxed and subdued. the rest is up to the individual to convince it that you don't need its help. having said that, life can throw a wrench your way in an instant. death, divorce, money problems, problems with family, we cant make those things go away. but, put yourself in front of the care line, seek a doctor for tests and medication advice, and calmly tell lupus you don't need its powerful help.
Hi Natura, do try meditation again, it doesn't have to be sitting in silence thinking on the day to day negativities and letting your thoughts and feelings run on and and on for an hour but that `can' be useful at times. An hour twice of some kind of meditation can be really good for you. In the morning i wake in so much pain that my brain feels muddled and i can not process what i am supposed to be doing. I sit and watch the sun rise, the rain fall, the wind brushing the branches outside my window anyhing that allows me time to unravel my thoughts. I take tablets, i stretch, do my ten different exercises that someone once taught me and i have a cup of tea or coffee depending on my mood. In the remaining time i might do some colouring [it allows my brain to start working/thinking about my day ahead]or i might put some music on and dance. Often i just sit and spin ome lovely yarn, [the sound of the wheel turning, the movement of fibre running through my fingers is the most relaxing thing for me to do.] Even the most painful mornings when sometimes i really don't want to move i push myself - an hour of doing something peaceful is a good way to start or end a day. When my children were little and had naps, i stole my hour as they grew i taught them how to steal their own hours away from each other to be alone with their thoughts but be close enough to ask for help should they need the extra comfort. An hour of reading to a child or another adult can relax you. Find your hour and do something that relaxes you and allows any negative thoughts/feelings to run free. Don't try and stop thinking about life,emptying your head of thoughts is hard just let the thoughts run away and be at peace with your day. I wish you well.
Thanks july.....kids r older, did read to them when they were young all the time. I hike in nature as much as possible...camp...those are the places for my meditating....just saw a great horned owl today. First time i ever saw one in nature. It was beautiful!
I watch the birds on my feeder all the time.
But, will try to meditate..
And so say all of us! Couldn't have put it better myself, fantastic advice.........and it works :o)
Terminal? Define terminal to me pls, I thought the purpose of your post was to encourage people not to stress ... By sayng that ??? 👏 Well done!
The definition of terminal is something that is incurable and will lead to death within a short period of time. Lupus is not terminal. There have been rare cases in which it has been fatal but most people are able to manage lupus with treatment.
Can someone please explain the Terminal sentence.
I have only just diagnosed 6 months ago, and I know my lupus is worse than having mild SLE, but the doctors have never said anything about it being terminal condition, are they hiding bad news from me? This has really confused me, though its still the morning, so that is not hard! Anyone can you please explain this a bit more to me! ?
Thank you x
Lupus is not considered to be a terminal illness. Most people are able to manage their lupus well with treatment though unfortunately, in very rare cases it can be fatal.
I think some of the confusion about SLE being 'terminal' comes from oldies and sub-oldies like me - diagnosed 1983, when understanding of the illness was next to nothing and treatments where pretty slap dash & awful. When I was 15 (1983) I was given a pamphlet (panphlet is an old word for web site) saying statistically speaking I might have 5 years to live. These stats were based on nasty historical expectations.
Also, coming from the medical dark ages, older lupies tend to have war wounds that you will never have to worry about. (ie. its older patients with freaky complicated histories that tend to be the very rare deaths - or sometimes early onset children who are in third world conditions )
Today aggressive SLE is absolutely controllable !
" Trust Me "
I see the contrast between now & then.
With advances in genetic based treatments, stem cell research - better medicines etc. I think you're biggest worry will be planning to live till you're 120 years old.
good advice Marie - this life is helped by self help which gives you a sense of control.
lupus continues on in your body going around to different places to reek havoc. this will generally go on for the rest of your life. at first you will get long bouts of remission, then they may get shorter. this could take years or months depending on the individual. these timelines are personally tailored to each individual, and each individual would benefit from observing, and perhaps documenting, all the changes and remissions.
during the middle of my frustration, after a long haul of fighting with lupus, I decided to 'get to know it'. get to know the demons that is not going to go away, and perhaps come to some compromise with it. along the way, my journal showed me that I was actually focusing a lot on 'myself' inwardly and outwardly. taking care of 'myself'. making 'myself' an important player. a perspective that was an actual a positive outcome of lupus.
a friend recently asked me about my lupus, and I told her "I own it, its my cross to bare, im doing my best, and that will have to suffice" she smiled at me.
terminal, permanent, forever, are just words. the gold lies in the positive lifestyle changes you are making inside and out, strengthening your sprit, your soul, your heart, your knowledge. lupus is an emotional journey that starts with no map, but a machete to hack down your own path.
lupus is an emotional seeker in a physical form, inside your body. each time you are upset, hurt, messed up, at the end of your rope, it sets your immune into action trying to find the problem that is upsetting you and fixing it. you just have to gently tell it that its 'help' is not needed, you will deal with the problem yourself. and give lupus a pill to calm it down lol.
By way of making a more general statement to everyone in this thread, it's worth pointing out here that lupus is not a terminal condition.
From what I've seen of her comments, mariearmstrong seems to mean that lupus is presently incurable and in light of that she wants to urge people towards acceptance and self-management.
Through treatment, most are able to manage their lupus though there are some unfortunate, rare cases in which it has been fatal.
yes thank you George. to be exact, the context I used with the word terminal with was, that its easier to think of it as lifelong, and life threatening rather than aim for the day its all over and gone. I feel those are false hopes and to be prepared for the worst by arming yourself with teams of doctors, information and self help education. otherwise, yes, you are hooped. the pain and intolerable amount of side effects from lupus wont kill you, but one day can start to shut down organs and vital functions in your body, including your heart. best to know these things to help with your choices. My apologies to all of those that felt fear upon hearing that. I have experienced closely loosing vital organs and actually was facing a downward spiral that way until I received a week of treatments with 1000 mg IV steroid treatment, a blood transfusion and kidney dialysis was next on the list if the steroid showed not enough medicine to start my kidneys up. my heart is still being monitored. I must face the worse case scenarios now because I wasn't told the whole story.
Thank you George
I'm sorry mariearmstrong, I completely understand that your heart is in the right place! But your post this morning threw me in to a place of despair. The word terminal is as horrific in words as it is said aloud.
So thank you again for your reassuring post George.
As a newbie to SLE I do tend to hang off every word that is posted on this site.
With the shock this illness brings, all the drugs, 2 weekly blood tests and the hospital appts and not being able to work ATM Im mentally feeling low, I do look forward to being in a place where I can be positive again as I use to be. At the moment I feel like the Pink Panther with that rain cloud right above me and I can't escape it. I can't wait for the day I wake up and just feel better, that I know I'm in remission and the pain is gone. It' been 7 months now and no sign of it. I'm worried it will not happen.
How much longer will it take??
It will happen.
Don't fight it. Rest, and go out of your way to do things that give you pleasure, even if it just seems like semi - pleasure at the moment.
Primal things that go straight to the base of the brain are good.
eg. Expensive chocolates. Head banging music.
Other primal things?
Thanks Freckle 1000!
It's weird I'm feeling so much better today, where yday I felt awful. You never know where you stand with this thing! Chocs and hand banging music do help!
Just going on your name, just wondering if your like me, im very pale (shades of grey some days) and covered in freckles and moles, from an Irish family.
I dismissed SLE completely when I was 1st ill, as a lot of info said how rare it is, then 2 out 3 with SLE are Afro-Caribbean or Asian.
Is skin colour a link in any way? So I was shocked when diagnosed after reading this info, I still don't understand why I have this illness, maybe I just want to blame my freckles as they have always been a pain!
Thank for the support! x
Having those good days are a good sign ! Things could be heading in the right direction.
Ha. : )
Yes - I'm lilly white with a delightful background skin shade of greyish green.
I'm from Australia but my DNA is mostly Irish/Scottish.
I'm 48 so now my freckles are attempting to join together.
I like to blame my brother for my lupus because of the UV rays reflecting off his bright red hair.
I'm a slightly sad history train spotting nerd, and I vauguely believe from looking at DNA migration over squwillions of years its possible to have all sorts of unexpected genes, as well as genes affected by a random ancestor having a bad couple of days 600 years ago. ( epigenetics ? )
Also possible that afro - carrabean people have a fair wack of Scottish DNA due to horrible nasty history.
Putting the nerdy stuff to one side though, I think sometimes when bad things happen we ask ' why ? ' when we're actually asking another question altogether that doesn't exist in the English language.
a kind of primal - "what the hell ?" only worse.
An answer for the inexplicable unfairness ?
(Sorry - trying to be deep)
Strangely enough - for all my pastyness, the sun doesn't seem to trigger rashes or flares for me which makes no sense whatsoever.
How do you go in the sunshine ?
Interesting what you say about allergies. Have you ever been able to get your doctor to refer you for allergy testing?
I live on the blood group diet as much as possible, but when I was tested by a practitioner who was brilliant, she said that sometimes I test like an A and sometimes like an O group.
I told her I was O- and she asked what my parents were.
I knew my father was O+, but didn't know what my mother was.
She was seriously ill in hospital at the time and it took me quite a time and effort to get the nurses to tell me her blood group - they said it was patient confidentiality.
I explained why I wanted to know and seeing me weighing below 6 stone, they said they would leave the file open for me to look at a certain time, but not to say anything to anyone.
I found out she was A-.
I found that so interesting and it added weight to the practitioner's testing results.
I have so many allergies because sometimes I can only eat A food and others only O group food. If I get it wrong, I get allergic reactions. (Practitioners said what an odd combination of parents!)
I agree with you regarding negative thoughts, too; I have to be so careful what I allow to come into my mind. I trained in natural healing and meditation to help me with this.
I do meditations and positive affirmations all the time and self-healing as if I was working on someone else. When a negative thought comes in, I do my best to bring in a positive statement. It is so odd why we suffer all this and yet others do not.
yes, we have done allergy testing. the odd thing, but very useful and interesting information there, was that I was not allergic to one single thing. yet when I went near chemicals I had a flare up, many different foods gave me a flare up, beginning with a horrible burning rash, which is allergy-like reaction. my tongue would swell up. I was having lupus reactions to food and chemicals, that would masquerade as an allergy. So having the allergy tests separated my schools of thought, and clarified how to approach flare ups. it was helpful in isolating causes.
Thank you for clarifying terminal. I read and tried to remain calm and positive. Ha! My logic was if marie has lupus for 25 years, how is it terminal? I am releved to hear different.
well, my kidneys are sitting at 15% function right now, and the doctor said I will never see 40% function again even with a miracle. probably looking at preparing for dialysis at some point in the next 10 years. my lungs have shrunk and i get reoccurring lung issues. that's not going to be one of my main strengths going into older age. i need a blood transfusion when my blood work comes back without a stich of blood cells caused by lupus anemia, and i watched my grandmother die after 20 years a cripple and her whole body affected. She was in a hospital for years basically waiting to die because she couldnt move and the pain was obviously ruining her mentally and physically. This was the early 70s when there wasn't a diagnosis for lupus. but its pretty obvious im taking after her. I have since heard of people younger than myself die from lupus complications, in all age groups. If someone had told me even ten years ago that lupus was life threatening, I would have started the meds ten years ago when my kidneys were functioning. sometimes bad news is helpful. but I was told it wasn't, and that was bad advice. I see as a positive to know the worst outcome. I see it as a negative to be told its not as bad as all that. so people will have to take that information whichever way helps them best.
I have to agree that it may not be considered a terminal disease, I still see it as a form of terminal because you can manage it for so long and it still leads to death sooner or later. Sooner for some and later for others. If there is no cure, eventually all the flare ups and other diseases that come along with lupus will end your life. You have to stay positive as you main option to keep flare ups down and that is what we all working toward. Staying positive and encouraging each other along the way. This group has helped me so much but I am new to this and still trying to absorb it all. Hugs
I see where you're coming from now. Its absolutely appalling that no one informed you how serious SLE is without treatment. That must be really difficult to deal with just as an issue by itself.
I'm really sorry you're having such devastating blood & kidney problems.
Through ancient mis - management I've been tackling some grinding kidney problems myself.
Hard to wrap youre head around the unfairness & trauma attached to it all.
Acceptance and self care is a good place to be.
well my purpose of coming on here was not to seek any kind of pity, or sympathy. I'm pretty past that stage. I am starting the drug journey and am quite committed to it. but to get to here I had to cross another threshold first. I now love my doctors and trust them enough to ask for anything I need, and tell them anything I need to tell them, and they are there for me. but the trick I found to that was to get them to trust me. that took a while. like ten years or more.
doctors really aren't trained to look after the psychology of their patients. only physical. once I could go and sit in their office (or hospital) and talk to them without any emotions, and just talk straight to them, and let the tests talk to them for me also, I found we connected. It also helps to be half dead when they wheel you in to the emerg. then they really treat you special!
Then I had to let go of the control. it helped that in the last ten years, Lupus medicine has advanced leaps and bounds! something I could remotely rely on. before that, I was upset and scared and desperate all the time. I was also angry. I was an athlete working my way up. It was a dream of mine to be the great tennis star. (did anyone know that venus and serena both have autoimmune diseases? they are the toughest chicks in the universe to me! they are my mentors!)
I see now that doctors actually take a step back and cover their ears to your emotional input. All in all I found the journey into medical support much more challenging than taking care of my Lupus by myself LOL. Well now I seem to have both, but no history with the meds, and the new journal has been christened! and the doctors are pretty accommodating. so that to me is a huge milestone achievement. I do hope to live long (and prosper again) but Lupus' full intention is to kill its host eventually, using whatever it can. that much I do know. I also realize its possible to buy yourself time and relief once in a while.
its going to be another interesting ten years. oh, btw, my kidneys have made a 3% comeback using the modern drugs AND natural herbs designed specifically for lupus nephritis. Im now at 18% usage without using the mycophenolate, and I have not started the ramipril yet either. I shelved those and stayed on Plaquenil and steroids and thyroid (and the sedatives, and the sleep aids work amazingly with them.) I sleep like a baby and during the day I get the work of ten people done. that's a huge turn around for me. so please excuse my super enthusiasm. but my hope is for that to be contagious.
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