[onetay]

Hi Everyone, some of you know me from the chat room, the replies that I post to your threads, or the cat picture of one of my cats. I was sitting here after a long day wondering How Lupus changed my life? Then I wondered how many of you on this site sat every night thinking the same thing as me? The more I thought about it the more I am not sure just how long I have really had lupus.

I can remember being very active in my younger life. When I had my kids all my dreams were coming true, as far as my children. I went back to school, worked, took care of both my parents, my and my mom's houses, and the kids. How did all this go south in one visit to a dermy and one byopsie? How is it possible that one day can possibly turn me into a chronicly ill person? It was not like that at first. I had the sun thing, which caused the rash, and the fatigue from the sun, but I was still living.

The last couple of years I have went from what I thought was an adjusted 40 year old women to an achy 80 year old body. I know what I should be able to do, but between the fatigue and the joint pain makes life challenging to say the least. Many of you know what I am saying. I will not give up the fight to have what I want out of life. Any of you that have chatted with me know that I am stronge and stubberen. For me lupus is nothing more than something that I have to over come or at least have control of. I hate that part the battle to remain in control of a disease that is just as stronge and stubberen as me. I have not met my match! It can slow me down, it can make me hurt, it can even at some point make me stop working, but I will not let it take control.

I hope that this inspirers some of you to post what lupus means to you. I think it is important for others to read our posts and be encouraged to try and have a normal life as we can. The site has been a way to reach out to others that are like me. It helps me to know that I am not alone and to have people to turn to for support when I think I can't go on. Some of the mods here have even become a very important part of my life, as they listen, don't judge, and offer some of the best advise around. What does it all mean? Well for me it is a place to put the feelings and emotions that this wonderful chronic disease puts in my face everyday. I know there is always someone here that can help me no matter what lupus has in store for me today. I can wake up and lupus can give me it's best shot, I know I can come here and it will be better, even for a few minutes.

One can say that lupus has taken my life away from me, and it might of to some point. But as long as I have a breath in my body than I am still in control of the lupus. I don't push my body much any more but I do still try to push it to the limits just so I keep a handle on my limits. I have not given up. Something comes to mind as I am writing this and it is: There is always someone worse than me somewhere in the world. Maybe this one little sentences is all we have to remember when we are feeling down and like lupus might win today. I do hope you all are feeling well and doing well. We can all want more that is normal yes I said it normal.

 

[dixy]

Hi Tammy

Deep breath here goes. Lupus to me is sum sort of alien who has entered my body. I didnt know what had hit me. Like you I was so full of energy endless amounts. Five healthy children to chase after. My house was spotless lol I did all the decorating. Gardening used to be up ladders chopping trees back. Kept myself fit and healthy excercise, swimming,dancing classes. managed to do adult learning classes. Always on the go. I can even remember going 4 my 6 week check after my 5th baby at 7.30am I had also managed to get the other 4 up washed and dress to drop off at my mums, think I also hoovered the house

So to be wiped out with this Lupus Im like u at times like a frail old lady in her eighties. (So unfair some ladies in there 80s R so full of life) I thought that would be me. My nan worked as a waitress well past retiring age . My mum and Dad are in their 70s now and is so full of energy Dads been going skiing every year and mum goes treking up th mountains.

Its hard to except things r different now but I have no choice. I do feel like Im a stranger in my own body. Just have to find different ways of doing stuff and other interests. You find at this time who your real friends R. My neighbour and good friend bought me a wheel chair and other aids. So kind of her. No it was hard at first but I could never have got out with out a wheelchair. Meds r working 4 me now but its been a long and scary time. I was so weak my body shut down I could barely move my hands were useless had to sleep propped up on loads of pillows. Breathing hurt could only take shallow breaths.

The most scary thing was I had come to believe this was normal This was how it was a living nightmare, hospitals tests and more tests Ive gone from a no nonsence person to someone who freaks over needles.Feel like a guinea pig.

The way I have to think now B 4 I would just get up and do. So having to think myself out of bed (this could take a hour )or think can I open the door squeeze the tooth paste(had to use my knees to get the toothpaste out)

I was never put on antimalarials. Steroids didnt work tried 3chemo drugs they also no good. Various infusions of meds. Till last resort med Campath. which I would have died if my poor hubby hadnt been with me. Even though I was told I could die this didnt register with me(like it was someone else they were talking about)

Well 2 day Im so much better retuxamab every 6months and a cocktail of meds over 30 pills a day Still have loads of weird symptoms they come and go. My pain is managable. I can move still sleepy but its my power nap now. Still live at the hospital lol Been a good year so far (touch wood) I spent 6 weeks last year on and off in hospital. So its just making the most of when Im well. Im trying to get my independance back I actually drove the car last week. A small thing to others but to me its been 3 years so well pleased with myself. I find its the simple things in life that I love and appreciate. Just sitting in the shade in the garden watching the wildlife. Chatting with friends. My son is engaged to b married and Im so happy 4 them something to look forward to.

Sorry Ive gone on a bit
dixy

 

[sushi]

lupus for me

i think my lupus started when i was a little girl...i got up in the middle of the night in excruciating pain down my legs...aches and pain on and off for a while after. but the it went away completly. i got diagnosed through a skin biopsy after i complained of very itchy arms after exposure to the sun(it was actually my only symptom for the next 20 years) no pain, no fatigue. i was very lucky. and still consider myself lucky, even doe it hit me really hard these past couple of years.

i started getting more symptoms in 2006 with numbness and tingling, heat underneath my feet. then came my depression, along anxiety, and finally panic attacks. shortness of breath, palpitations.

the one thing that i hate the most about this disease is that its so unpredictable. and thats what scares me the most. i hope to god that they find a cure some day, for this and other devastating diseases.

im on antidepressants right now and in the past 2 weeks i have noticed a difference. i feel much better emotionally. i have 3 grown kids and a wonderful supporting husband. i really hope that i overcome the fear of this disease and its on my mind all the time. im always afraid of going to the doctor and find out that something else is wrong. but im getting better and better everyday in that perspective. i am really grateful that they have better treatment today then years ago.

 

[sushi]

i forgot to thank you for this post onetay, it feels good to let it all out.

 

[Merle]

Hi Everyone

Being diagnosed with lupus last December has allowed me to re-evaluate much of my life to date! It was like getting to the denouement of a Who Done It and re-running all the clues in one's head in a new light.

I was taken into hospital aged 4 for three weeks with suspected rheumatic fever. The tests were inconclusive and illness was dismissed as being psycho-somatic (even the 104F fever?!?!). My childhood asthma was similarly dismissed - our GP took the moral stance, that my mother being a Divorcee, would likely predispose me to attention seeking! (after all, this was England in 1959, when divorced women were excluded from being members of the Women's Institute).

My father had a doctorate in psychology and maintained his own diagnosis of "neurotic" for his only daughter until his death (more of which later). This is a man who had read Freud in its original German and, had Hippocrates not got there first, would have been proud to have been the first to coin the term "hysterics" (meaning a condition particular to women, caused by disturbances of the womb)! Thank goodness medical science has move along somewhat in the past 50 years!

Despite chronic bronchitis and repeated bouts of pleurisy throughout my childhood, treatment was minimal and frankly unsympathetic. When in 1974 I was diagnosed with glandular fever, my father advised me till he was blue in the face that there was no such condition and that I was malingering. This approach was maintain throughout repeated bouts of glandular fever type illnesses, polycystic ovaries, troubled pregnancies, fatigue and depression. Perhaps because of him, I only finally admitted to and sought help for the depression some 15 years ago.

Sounds strange when you write this down - but I've always had a sense of my being emotionally and physically inadequate - that is, until my diagnosis of lupus last December. Suddenly it all made sense!!!!

Now here is the sad irony! The symptoms that eventually took me to a neurologist and finally led to my diagnosis, were brought on by the stress of my father's protracted illness and death in October 2006. So while he never got a chance to re-evaluate his diagnosis of me, he did for himself. His stubbornly held view that his own lower back pain was merely arthritis meant that he only sought medical help after prostate cancer had developed secondaries and entered in his spine.

I now hope against hope that the plaquenil will kick in for me soon and that I can live a productive life again. I've learnt a lot and am now truly scared that I will not have a real chance to enjoy my new perspective. I want so much to be whole - to be able to work, exercise and have fun again.

Merle

 

[spellbinder]

are you sure you want to know

:wavesmile:hi tammy

wow, i don't think i've ever really explained myself and lupus so here goes...

i suddenly got ill when i was around 23 (im now 50), it was my legs. i couldn't walk, and was in alot of pain. it felt as if someone had taken my legs out of my hip joint and then stuck them back into the wrong socket and backwards. i also lost my sight for a week. on and off over the next several years i had weird symptoms. we thought maybe i had MS like my sister. i continued to having weird symptoms, usual things fatigue, pain, swelling etc and i noticed that everytime i went to the beach when i would come in from the beach i was bone tired. took days to feel normal. i kept going to the doctor always diagnoised with the flu. so i plugged along and forced myself to be normal. at age 27 i was blessed with ebstien barr and infectious celuitis for my skin problems. for the next 10 yrs i was always sick. holding down a job was just horrid, but i did it. in 1998 i noticed that when i drank (i was a wino :wink2 i would have differnet reactions, i could drink a bottle and feel nothing the next week have one glass and i was sick as a dog. i then was diagnosed with hep c.
well finally when i had a spell where my right side was numb and face and eye drouped. went to the doctor thought it was a tia but nothing showed on the scan then we started to really go find out what was wrong. it took until 2002 to finally find out i had sle and now have cns/sle.

to me lupus has been like the relative who came to visit and never leaves .... it has robbed me of my lust for life. my doctor once told me i crammed more living into life than anyone he has ever known. it robbed me of my career, of my ability to raise my daughter when i left her father.and robbed me of my current husband who to this day i love so much i miss. i often feel like throwing in the towel, but i guess i still have some of me left cause i won't let it win. so i have to live with the relative who won't leave and who always gets their way. the gift that keeps on giving.
if i had to sum it up in one word... EVIL come to mind.

sorry for such a long post but you did ask for it. :wink2::wink2:

take care all
and be well

hugs and kisses

 

[Douglas]

Bad and Good

What is Lupus to me? It is a mixture of good and bad.
The bad:
It is a hired assassin lying in wait as invisibly as the best ninja who leaps out with one or more of his many weapons and clobbers me when I least expect it. He may use a sharp sword to slash my kidneys or back, a club to my knees, wrists, hips or elbows, a spear to thrust through my hips, powder to blur my vision, etc.
It is a giant wolf that can take a chunk out of me wherever he wants.
It is an oriental magician who can hypnotize me into suicidal depression.
It is a thief who stole my work away from me after 35 good years.
It is, above all, a huge pain in the...... portico.
The good:
It forced me into a very enjoyable early retirement.
It made our life happier, as Kathryn implies that I am much easier to be around now that I am no longer charging about trying to do more than my body would permit. (The last years in harness were insane as I kept trying to perform well in my duties when it was impossible.)
It provides a great excuse to get out of anything I don't want to do.
It gives me a blanket excuse for any stupidities:

BLAME IT ON THE LUPUS!​

Douglas+

 

[KarolH]

Douglas................I really enjoy your posts.:lol::lol::lol::lol::lol::lol:

 

[sushi]

i enjoyed your posts as well Douglas.....

 

[dixy]

Hi Douglas great to meet u.

Nasty thing this Lupus disorder I too feel like an Alien has taken over my body When I was first sick we had booked a holiday. Just dont know how I managed to pack,walk round airport. Get to the destination, first morning I couldnt move every bone in my hurt dont know how I managed the holiday just came down to eat slept most of the time. Scary business when u r in another country. Should have been a great time. Couldnt bear the sun poor hubby sat on the balcony worried over me. That was over 3 years ago now would love to go on holiday somewhere nice but have fear of not being more than acouple of hours away from a hospital that specialises in lupus. So this has impacted on me in a BIG WAY
dixy

 

[pollianna]

Both my nemesis and my saving grace. My illness has shown me how strong I am. I was struck down, unable to make memories for 18 months, bedridden, unable to bathe, cook or stand for more than a minute. I was waiting for a wheelchair to be issued as I couldn't walk without aids. CTD has made me feel more self acceptance than I ever had or ever hoped to have. I told all of the specialists I had desease activity for the last 10yrs or so and not one of them listened to me. I saw a lung specialist who found inflammation in the lining of the lungs, eye specialist who missed all of my sjorens symptoms, two orthopeadic consultants, a throat specialist. Had a full body MRI as I was so gravely ill, (GP panicked and suspected MS), endoscopy, was told your fine, get yourself a phsychiatrist. A psychiatrist who told me "you have rheumatic desease and I can't help you I'm not a Rheumatologist". A neurologist who missed all of my Rheumatic symptoms.....A derm for hair loss who failed to notice along with my GP that I was borderline aneamic, couldn't explain the hairloss...............I was labelled as a fruit loop, basket case. I refused the anti depressants I persisted and persisted until my doctor could not ignore me....I eventually informed my Doc i had come to the conclusion I had Lupus. I got myself to the London Lupus centre and am now recieving treatment.

I live in constant pain, I have no social life, no love life and constant anxiety, mouth ulcers hair loss, crippling leg/joint pain, bone dry eyes, difficulty swallowing, spasms in my heart , chronic fatigue but I work 12 hr days. Consequently knowing that I was right all along and they ALL were wrong is both a comfort and a scary thing as I am the only one with no formal medical training.....

I am strong, I am invinsible, I am woman :lol:

 

[onetay]

I wanted to Thank all of you for your wonderful stories of your struggle with this uninvited guest that we all share. I am sorry this is what brings all of us together and bonds us like the family the world will never know. It seems like it has took a lot from us but has made us all stronger for the most part as we are fighters, making the best of the worsest. As for spell binder, you did a wonderful job with your story and yes I did ask cause I care and thought it would be good to see what it has taken away, but more important to look at how far we all have come even you my dear. Life is good because we make it that way for ourselves. Again I want to thank all that share their story with us about what lupus has changed their lives. I am still wishing all are well.

 

[alimonkey]

I don't know yet - all I know is the pain and madness of the last few months, and the fact that it has taken away a large chunk of my life. I don't have much life at the moment, I go to work, I come home, I go to bed. I can't do things I used to do - a few years ago I would have thought nothing of jumping in my car and heading off to London 200 miles away to see my best friend for a few days. Now I worry about driving to the nearest city 12 miles away - will I have enough energy, will I be able to go to the shops I need to, how long should I stay?

I was only diagnosed last week, so I guess I haven't had the time to come to terms with it properly yet. Not sure which phase I'm in, probably somewhere between anger and denial. I'm still learning what it will mean for me - but right now it's frustration. I want to do things, I want to have fun, I want to go out and enjoy things, but I'm either in pain or have zero energy. That's what it means for me right now, and I hope it will soon change.

 

[Hatty]

Interesting thread! I'm trying to work this out at the moment myself as I try to find a balance that works and to cope with what seems like a surge of illness and a surge of activity in my own life at the same time.

I suppose lupus to me is a part of me, I have had physical problems since I was 11 (although dx as juvenile arthritis and so other symptoms were ignored). I too like another poster have had to struggle to separate what is my emotional failing and what is illness that is not my fault. I still deep down believe that I am lazy, when all my friends and my long-suffering husband assure me I am exhausting in the amount I do/try to do. Being told for years that you are making it up, as so many of us are, hardly helps self esteem. I think in my heart of hearts (and despite all evidence to contrary) I believe that I am just making a fuss about nothing.

I struggle most in the way that lupus is so unpredicatable, adn in the ways that it affects those around me (particularly my children, with whom I can't play and with whom I get grumpy). I feel frustrated by it stopping me doing what I can, and sometimes wish I could just give up, give in, send my children to a creche and stay in bed, use a mobility scooter, buy ready meals, stop trying to work and change the world and make my name as an artist. But I don't. So I suppose Lupus hasn't won! I don't know what hte future holds and perhaps I will have to do all these things at some point, but I'm only 31 and here's hoping I'll miraculously improve...

I personally don't find thinking that other people are worse off makes me feel better, it makes me feel worse. Guilty for making a fuss, guilty for crying when my pain is less bad than someone elses. We are allowed to feel how we feel, and there is no scale of justification. Counting blessings is different: I feel that I have been so lucky with my friends, husband, children and life otherwise that it's only really fair that something shouldn't be so great, and that my health is what I lack. But as I seem to be getting iller, this becomes harder to accept....

Hey ho. Good luck to all of you!

x hatty

 

[elisabethm]

My first problem was Bell'sPaulsey after i had my son when i was 18.Doctor had never seen it in someone my age.Then my second problem was plurisy my father put polticeise on me everyday.Then i had my Daughter at 20.After that i had 2 misscarigies.Was sterilised at 23.Then had tenosinovitis had the op for that at 25.Then had a gland removed on the right side of my neck at 28.Then had one removed from the left side at29.That was my first scare of cancer needed a blood transfusion.Now i need to carry a blood card with me as i can only have one type of blood.Then i had shingils twice.3 lump's removed from diffrent parts of my leg.Had viral menengitis was in hospital for 4week's.Then came the bursitis next up was rhumatoid arthritis.Then came the lupus :lol:Then came the flares this one at the moment is the worst one that i have ever had.MY liver count is sitting at 515.going for a scan on the 26'th May that is an urgent appointment spoke to the doctor yesterday i told her we are going on holiday on the 14'th June she said i will give you a letter for your insurance so you can cancel told her not a chance in **** am i canceling it is the thing i look foreword to from one year till the next.I do bele ive i have had this disease all my life.Also had an op for tennis elbow but never played:lol:if i don't laugh i would be crying.The End

 

[jb1]

Hi Tammy
What a great topic - and yes I think we have all have those evaluating moments...

So what does lupus mean to me.... well I'll be honest - the biggest thing has been it has taken away my confidence - I am (was) a very independent person - I thought nothing of doing things on my own - now I prefer to have someone with me as when I feel poorly - I feel scared. And because you never know when it is going to rear its head - it becomes something a bit sinister. I think what gets me is you can be toddling along with everything going well - you're feeling fine (actually you feel better than you've felt for years because of the magical meds) and then suddenly out of nowhere - there you go right into a brick wall of pain, exhaustion, nausea, nightmares, night sweats, shaking, face ache and fear.

I guess that's what I find hard to handle - the uncertainty. I was only diagnosed last year (lupus and fibro) and so I suppose I'm still getting used to it and I do feel very fortunate to not have life threatening flares. I think the other hard thing is how people change towards you - some friends have drifted away - others don't really know how to act around you anymore - and some are just plain baffled - others though are kind and considerate and have been amazing. I think having something like this does make you appreciate life a bit more - its like the old saying that you have to experience the lows to appreciate the highs and that is true with lupus - moods, energy, pain... everything ebbs and flows and goes to extremes - but on the days when you feel good - well... you dont take it for granted.

One good thing to come out of it is that I';ve put on loads of weight - all my life I've been really skinny (and I hated it) I now weigh 2 stones heavier - ok so it is mainly around my belly but hey you can't have everything!:lol:

I guess all in all it is a learning curve and a personal challenge but I tell you what - without my Mum and Dad - this would be a different story - they are truly a God send and have made this on going journey bearable - they totally understand and quite honestly deserve medals for putting up with me for what I know has been equally difficult for them to come to terms with.

Our families and friends are the true heroes of our lupus stories folks - however hard it is for us - for them it is even harder.

PS This site has also been an absolute rock - we are very lucky to have such a place of solace to come to - :bow:

 

[Sam M]

What it is to me

Wow Tammy what a great thread. I gain strength day to day by telling myself it could be much worse and understanding the fact that there are so many other people in this world that have such horrible horrible things happen to them and for me it gives me some kind of perspective.

Having said all that there are days when i just want to curl up and give up. Even when my family try to give me a supportive hug it hurts. The tiredness and brain fog take over and i am no longer me i sometimes almost grieve for the person i once was its like im missing a good friend and then sometimes theres a glimpse of me but with caution i feel good today but i better take it easy because i might not feel good later or tommorow. For me Lupus/ Mctd is like waiting for something else to happen everyday is different everday something new to cope with and i couldnt tell you when it started i think perhaps ive always had it and it grows as i grow if that makes any sense :hehe: Today i have horrible pain everywhere cant stand cant sit twiching hands and the horrible fatigue heres hoping tomorrow will be better

This site has been a great support to me full of information and with the most wonderfully supportive people Thank you all and thanks for sharing i think thats the biggest thing we,re not ALONE X

 

[pamela b]

Yes what a thread
I dont know as yet what it means to me except that at the moment while waiting test results for the extent of damage done to my heart before starting meds I am trying to come to terms with the fact that while I knew what was wrong and it wasnt what the doctors said ( depression ) I am in denial about it all. After so long I have a name for this terrible thing that has taken away all that I had , a social life, friends and the ability to do a difficult job. This thing called Lupus has left me a wreck both emotionally and physically and incapable of so much I used to have the ability to do. I dont know about all of you but my family suffer as well as they have lost the strong willed person who could give them answers to their questions and problems that they now dont want to burden me with.
I dont know what the future holds for me as no doubt none of you do either and I dont dare think about it. Is there hope out there, will it get better ? Who knows and who shall we ask? Does anyone have an answer ?
This forum has given me help and support that the health professionals have not so thank you all .
Pam

 

[Rene]

A Cruel Theif!!!!!

Lupus has invaded my body and stolen my life from me. There is no way that I can say that I may have lupus but it doesn't have me becaue IT DOES HAVE ME and there is nothing I can do about it. I have tried just about all the meds. I am now on CHEMO!! Still constantly having to go up on steriods and Imuran and all the other meds.Including pain meds!! I am disabled,not able to go anywhere because of this dreaded disease!! My bed and my recliner are where you will find me with heating pads on varies parts of my body.My husband is so sick of it he has turned on me. He and my son get me food and drinks when I need them but they let you know that you are a burden to them.My so grips about right then and there. my husband usually lets it build up and then he verbally tells me off. I've gained 100 lbs because of steriods,my teeth are chipping away,my hair is shedding(falling out)and needs color. I always took such good care of myself.But now I can't and people don't mind making rude comments even though you have told them that you can't sit up long enough to get your hair cut and colored or sit in a dentist chair long enough or get an appointment when your well enough.But they sure don't offer to help. I feel isolated and alone. THAT IS WHAT LUPUS IS TO ME AND HAS DONE TO ME!!!!

 

[erenae1974]

I haven't been on this site for about 6 months, came back to read up & see how everyone is doing. Very interesting post. I agree, there are good points & bad points. For me also a good part of it is the excuse that I can use if I don't feel like going somewhere or forget something, just blame it on the lupus!

Oh, there are many bad parts too. I was dxd about 4 years ago, and had to start chemo (cytoxan) right away. I stayed strong as long as I could, trying not to let this beat me, trying to live my old normal as much as I could. About a year ago I lost my job due to being so sick, some from the disease, some from side effects of meds. Since then I have tried cellcept, methotrexate, nothing, tons of steroids (haven't been off them for 4 years now), and now I'm back on the cytoxan. I cannot take imuran because my tests show that I would not tolerate it. Well, I don't tolerate alot of meds very well.

I' ve been in and out of the hospital probably every 6 months or so, spent the last 4 of my wedding anniversaries in the hospital. I have also the severe pain and know what it's like to have to squeeze the toothpaste with your knees! Or a piece of bread is too heavy or you can't walk to the bathroom or anywhere for that matter.

I have "severe SLE with multiple organ involvement" and "difficulty concentrating and memory loss". I also have the raynauds, blood clotting, myositis, and I know there's a list, I just don't even know what all I have anymore! Got too overwhelming. So, since I am sick about 2 weeks of every month (which is an improvement for me!) and since I cannot hold down a job due to being sick, I applied for disability only to have them tell me that I'm not sick enough.

OK, I just lost all faith in fairness in that area since I know my cousin is on it who has a sore back, (so do I amongst all the other stuff!) and my other cousin is on it because she is rather obese. I'm appealing it of course, but it's a long long wait. Anyways, I try to be as normal as possible although I know it does slow me down quite a bit. If there's something I really want to do, like gardening for example, I wait for a good day, but then I know that I will suffer for a few after that. So I really gotta be sure it's worth doing!!

My husband has been great, I know it bothers him when I'm sick, and when I have good days we try to do things together that we used to do, go to dinner, movie, stuff like that. Well that's pretty much me. I guess it has affected me quite a bit, but I try not to let it get me down too much. Just take it a day at a time. I know, thats hard to do too, but that's the way it is for me anyways.