Personal stories 1
Personal stories 2
Personal stories 3
Personal stories 4
Personal stories 5
"My names is Stephanie, I reside in Newport Beach, CA. I am
27 years old and was diagnosed with SLE 2 years ago (2001). It started
when I got the flu shot. I immediately had a 103 degree fever and
was very ill. I ended up being out of work for 2 weeks. Right after
my joints were sore every morning, it went from my knees up into
my hands. I thought I had arthritis. My Grandmother was crippled
by it at age 35. In the next few weeks following, I was crippled
from head to toe. my daughter, who was then 7 had to get me out
of bed, walk me to the rest room, pull down my undergarments, dress
me, brush my teeth ect. I just couldn't move. I noticed by 6:00
or 7:00 in the evening I would feel normal again. Giving my joints
a good 10 hours of moving. I missed a ton of work. I went to my
fathers rheumatologist and he ran some tests. On top of the joint
pain I was extremely fatigued and depressed. The day before Christmas,
my Dr. called me in and asked me to bring one of my parents with
me. L knew the results were not positive. I took my mother with
me and was diagnosed with SLE. All the DR, told me was get a lot
of sleep, wear my seat belt and use a condom when I was sexually
active. I sat there in disbelief. He has no remedy or hope for me.
I had a million questions and he ignored me. I went home sad, confused
and angry. My father has been suffering from Wagner's Granulomatosis,
which is a lot like Lupus so he gave me some prednisone to make
me functional again. The pain was so excruciating I couldn't even
have a blanket touch my skin. I went to 2 other Dr.'s but no one
helped me. By this time my work was looking for any reason to fire
me. I finally went to my family practitioner with my test results
and begged him for help. He had Lupus patients from when he was
an OBGYN and offered his help. I went on a huge dose of steroids.
I started at 60 mg. a day for week and wound down over a 8 week
period. I instantly felt great but the wind down was horrific. I
gained 25 lb., I was swollen all over, broke out in cystic acne
and the depression worsened every day. I went back into my Dr. and
they just looked at me in shock, I looked and felt horrible BUT
I didn't have any Lupus symptoms. They put me on Prozac for the
depression and Tetracycline for the acne. After about 6 months I
was back to my normal weight and felt good. I was in remission for
1 year 1/2. About 3 months ago the joint pain came back. I am in
a pretty painful flare right now. The prednisone induced Glaucoma
in both eyes and I am dealing with that. I am looking for alternatives
to Prednisone. It just masks the lupus, the side effect just aren't
worth it to me. I am on 5 mg. every other day at the moment. I am
taking about 6 aspirin a day and changing my diet. Any diet tips
would be great. I also am photosensitive now. I live in Newport
Beach and tan all year. I went to a tanning salon for a wedding
I was in and only tanned for 6 minutes. I severely burned (which
I NEVER do, I have very olive skin) and went into a bad flare then
next day. I sometimes feel like I am abnormal, I can't do anything,
everything affects me negatively. I am newly engaged and just starting
to plan my wedding. I am scared the stress is going to make me sick.
Any suggestions to keep my head on straight would be wonderful.
Please feel free to email me at : [email protected]
It is very encouraging to have websites such as this to go to for
information and support... Good luck to you all!"
"I am 43 years old and I am the mother of 3 wonderful children
(15, 13 and 2). I was diagnosed with Lupus about 2 years ago by
a rheumatologist with the bedside manner of a mortician (meaning
he diagnosed me as if I was dead and therefore had no feelings/worries/fears).
I left that office with no information, no questions answered (I
couldn't ask any - I was stunned), and told to come back and see
him if I had any other problems. I had originally been sent to him
because of a chronically swollen left knee. I have NOT been back
to see the man, despite the fact that my symptoms have gotten worse.
Coin-sized bald spots on my head, very dry eyes, interrupted sleep
(not just by my two year old), joint pain, joint pain, joint pain!!!
Sometimes it is so bad it wakes me up, sometimes it is so bad I
can't sleep. The disease has progressed to my kidneys (I finally
clued in that this is not a chronic bladder infection) and my left
ankle and knee are swollen more often than not. I also have migraines
(which I have had since my 20's) that have increased in severity
and frequency. I am chronically depressed (lucky me!!) but I am
currently not on medication because I want to clean out my system
for the next onslaught
of drugs/potions/whatever it takes to help make me feel better.
I am trying desperately to finish my degree in History but it is
slow going (slower now that I have acknowledged to myself that I
have this disease). On days when I feel 80 - my way of admitting
that I have a Lupus-flare- it is all I can do to keep my little
one occupied. I really miss running but am looking to find something
equally as stimulating but less stressful on my knees and ankles.
I wanted to let everyone out there know that you are not alone and
that if you have questions, suspicions, feelings do NOT let anyone
else brush them aside. While this disease is not "fun"
or "glamorous" or even "flavour of the week",
we can live long, happy lives and there is hope."
"My name is Laura Derbyshire I am 19 now and I was diagnosed
with SLE at 16. As a consequence of my lupus is was later discovered
that I had inflammation of the heart muscle and a leaky aortic heart
valve...this meant I had to give up my dream of joining the Army
and my Physical education studies at College... but that was then
now after much determination am back studying this time at University
to become a paediatric nurse... at times it's hard but friends and
family are always there lending me support... I found losing my
hair hard especially since I was only 16 and the weight gain from
the steroids and thought appearance mattered much than anything..how
wrong could I have been!! I have a fantastic specialist who thinks
I'm mad... and a dad who is very proud of attitude to life. I'm
determined to make the best of what I've got. "
"My name is Marilyn Plant,I'm soon to be 48yrs old I live
in Little Rock,Arkansas.I have tentatively been diagnosed with Lupus-
Sle, Definitely have Sjogren's syndrome,Raynuad's syndrome, fibromalgia,
IBS,etc. I have been sick now since 1987.Like many of you I was
misdiagnosed too many times to count ,I had the" MUMPS"
as diagnosed by specialist several times,When in actuality it was
my parotid glands that would swell in a matter of minutes to cause
indescribible pain to the point of not being able to open your mouth
at all.I started with this progressed to severe migraines,became
unable to shed tears,had innumerable eye infections, dry mouth,
but most devastating of all was the fatique. I am a respiratory
therapist by profession and it became impossible to perform my job
in May of 2002 and I had to medically retire then.There are many
other things that have affected me over the years I've started to
have seizures that they can find no cause for with MRI's.EEG's or
Cat-scan's in the last year and a half, As you know the list of
things can be never ending.But enough of that I now am in a remission
phase an I'm feeling pretty good considering,the one thing that
is driving me crazy is this rash that is covering my face has caused
skin discoloration (I'm African American) and is now descending
to my neck, shoulder's, arms, and the front of my leg's. Contrary
to all the literature it itches intensely.I thank all of you for
your stories they do stop you from feeling alone with this disease
or these disease's take care and GOD'S BLESSING'S TO EVERYONE. MARILYN"
"Hi to everyone who so graciously contributes their stories
and feelings to this site. Y all mut know how comforting it is to
know that there are others in the world also experiencing this disease,
and at my age. My name is Jamie, I am 23 years old and was diagnosed
with lupus at the beginning of this year. I also had another autoimmune
disease when I was about 10 (ideopathic thrombocitic purpura ITP)
in which my spleen was removed. I started experiencing strong symptoms
as a result of a hormonal change in my body and soon learned that
I was pregnant, and since experienced a miscarriage. My symptoms
started out as severe pain in a fingertip, which I learned was not
receiving bood flow as result of some sort of blockage. I visited
the emergency room three times (each time in extreme pain) before
i was finally referred to a hand specialist, then a rhematologist.
Over the course of a month or so I started to eperience major joint
pains and got to the point where I could barely put on my clothes,
brush my hair or teeth, much less walk around. I felt crippled and
terribly depressed as most people around me did not understand my
pain. I was trying to take time off work, but due to my job I was
unable and had to bear the pain as best I could to get wok done.
I was stressed, tired, overworked and in constant pain. So, I called
the rhematologist who informed me I needed to come in for tests
and immediately put me on prednisone to decrease the pain and swelling.
I thought I had taken miracle pills! I felt great, but soon learned
the effects of prednisone and that I would not want to stay on such
a high dose for a long period of time. It has now been roughly seven
months since i began treatment and things have been going well.
I am down to 7.5mg of prednisone (up from 4mg since i recently started
eperiencing some joint pain, hair loss, fatigue and off and on depressions
again) and 400mg of plaquenil. My closest friends are the most supportive
and understanding although my family still doesnt seem to understand
the extent of the pains when they come. I try my best not to be
moody. At 22 it was a shock, but also a relief in learning I had
lupus. i finally understood things about my body that had been happening
since I was a teenager (tiredness, hair loss, depressions) and was
glad to now understand the complexities. Now, i wonder about the
possibiliites of having children, about how i can get health insurance
(i have been told I am uninsurable), and how to find the type of
job that can support me and possibly any flares I may experience.
If anyone has any suggestions I would love some advice. I've recently
graduated college and am getting a real estate license in AZ hoping
to better put me on the market for success. Again, thank you to
all of you who have shared your experiences...they have proven tremendously
helpful and comforting to me!!! Best wishes and may God Bless! *Jamie"
"Hi, my name is Marilu, I have lupus for the past 16 years,
since 1987, soon after I had my first baby. I have been taking prednisone,
plaquenil, coumadin, darvocet, and others. I'm also using Duragesic
Patches which help me a little. I just heard today about a new tanning
bed of long waives that was created for people with lupus and makes
the majority of the problems disappear, I will appreciate if someone
knows anything about this to let me know. I'm in pain 24/7, recently
I started to loose most of my hair and I'm going crazy because that’s
one thing I hate the most. I gain weight due to the prednisone,
also besides lupus I have Reynolds syndrome, fibromyalgia , rheumatoid
arthritis, vasculitis, chronic migraines, conic fatigues, neuropathy,
pleurisy, pericardiatis, depression. I also feel your pain since
I had suffer with all my problem for the past 16 years, and it seems
that nobody understand what you are going thru and you feel so depress.
I wish there will be a cure soon, but in the meantime I try to do
as much as I can when I do feel good.
I live with my ex-husband and my 2 kids but I feel like they don't
want to know any of my complaints and they do not care about them.
I'm also on Disability and I want to let you know that those that
can't work because of the severe pain to try to get disability I
feel the stress of any jobs can make feel worse. Since I quit working
I feel a lot better. So try to get information with the Social security
administration or an attorney. For those who just started with the
illness, please be patient, get a lots of information, and no matter
what anyone says you are not crazy, the pain is always there but
you have to try to fight it so you can keep your mind busy. I hope
in God that you all find the peace to deal with your problems and
that soon will be a cure for all of us.
If anyone knows anything about the new tanning bed please contact
me at [email protected]"
"I was diagnosed with SLE eight years ago, at age 25. For
many years I suffered from fatigue and lack of stamina, but then
I developed a strange symptom: the last two fingers of my left hand
become swollen to twice normal size and were black and blue. It
wasn't a sprain, break or other injury--- and the symptoms persisted
for a year. No doctor could figure it out until I went to a rheumatologist
in my new home of San Francisco. She suspected lupus, or some other
autoimmune condition, as my fingers indicated a severe case of Reynaud's
Syndrome. She put me on Plaquenil, which I took for several years,
and gradually my symptoms abated. I still have Reynaud's--- and
have to make sure to keep my hands warm, so mittens are part of
my "prescription"--- but only when it's chilly or if I
get too run-down. I still have some fatigue and need to be very
careful about getting enough rest, but I am no longer on meds and
manage my SLE through a healthy lifestyle. My exercise regime consists
of a lot of walking, a little running, Pilates, free-weights, yoga---
plus meditation. This combination builds stamina, is gentle on the
joints (not the running part, mind you!) and promotes overall strength
and flexibility. I feel more fit, look great, and am able to live
a moderately active life thanks to my methods and my loving, supportive
partner. Lupus has been my great teacher---- allowing me to learn
from my limitations, not be hampered by them. Every day is a new
challenge--- as well as a gift.
I wish you all bountiful health and lives full of love and learning!
Dana Ziegler, San Francisco, CA"
"hello my name is jodie I'm 25 years old a mother of two and
live in hemel hempstead. I was diagnosed with SLE in may 2003 .
It all started when i was getting really bad painful joints to a
stage were i couldn't even do up a zip on a top i went to my GP
for my blood test and was told to come back in a week , but before
the week was out the pain was getting worse so i went back to my
GP who said i was a bit anaemic and i should go to hospital , after
spending 5 hours in A+E i was eventually seen by a doctor at 1st
he said u have just got a bit of arthritis but decided to take some
more blood the next thing i new they were they were putting me into
resuss because as they were taking the blood it was clotting very
fast and they thought i was having a stroke , after more tests and
more doctors i was finally diagnosed with SLE like a lot of people
i didn't no what it was and had never heard of it, i was put on
a private ward as my immune system was so low, i felt very alone
and scared as at the time my mother was on holiday and all i wanted
was her to tell me that it was gonna be alright and comfort me.
I was on very strong pain killers for 3 days but after a while i
had a side effect and lost the sight in my eyes for several hours
which was very scary and i could see my life flashing before me
my main concern was my children and i didn't want them to see me
in the pain i was in, after 7 days i was finally allowed to go home
with a large quantity of pills IE :co codamol co proximal folic
acid and 60mgs of prednisolone steriods and appointments once a
month to see a rheumatoligist . After six month my steroids had
been reduced to 25mgs but i had my first relapse where i could hardly
move as my mum was with me she had never seen me in the pain i was
in and was very upset as there was nothing she could do for me the
doctors put me back on 60mgs just to get the disease under control
again and have now put m! e on calcium tablets . I get a lot of
pain in my hands for time to time so i have got a splint to wear
which i find a great help . I'm now back down to 30mgs and am staying
on them until after Christmas then back to the Hospital for them
to introduce a new drug as they now know my balance is 30mgs and
thank god the weight is finally falling off . I'm glad i came upon
this site as i now I'm not alone in what i go through take care
of yourselves life is to short Jodie x"
"Hi my name is Helen, I like many others have lupus, It has
been nearly 3 years now. I am a wife and mother of 4 daughters aged
between 16&8. I had lots of sores on my thighs and arms they
told me like many others it was chill blanes then stress, this carried
on for nearly a year. I then met five doctors who then told me what
it was. I have tried drugs which helped for a little while, I am
now waiting for an eye test this week so i can try different drugs.
At the moment my face legs & arms are really flared up, I olso
have pains in my legs which really gets to me. I find that if i
do my shopping early in the morning i do not see many people only
a few stare but i can cope with that. why? Are peolpe so nasty,
its my kids i feel it for the most. I have just had major op. as
well which is not helping. Good thing is i have learned how to use
P.C. some days i feel i am on my own, i am fed up saying its my
rash or my belly is sore. sorry if not making sence, thanks for
listening. Helen."
"I was "diagnosed" with SLE about 18 years ago. I fortunately
had a very quick doctor. I went to him with a list of complaints
that covered the front and back, all lines, of a piece of paper
from a legal note pad. I had just finally given in and started writing
every complaint down as I experienced them. Come to find out, my
mother's father died of lupus many, many years earlier. His was
diagnosed way after organ involvement. I went through years trying
to 'behave' - get my rest and not let stress get me (how many people
can really do that?!?) I then found out I was pregnant again. After
having read all the flyers, brochures and books I could find, I
talked with a nurse at my rheumatologists office and was told it
could be very dangerous for me to carry a baby, both for me and
the baby. I was married to a man who was of no help at all and I
had an 8 yr old daughter. Against everything I believed, I had an
abortion. I did not want to die and leave my daughter to God knew
what kind of care nor did I want to live out the rest of my life
with her as an invalid. These were the dangers I had been told of
by the nurse. Thank God research has come a long way and women are
not getting this wrong info any longer. The pain of my decision
will always be greater than the pain from my lupus. I have been
very fortunate in the way that since my last big flare (about 15
yrs ago) I have had little more than joint and muscle aches, diarhea
and an occasional bout with fever. I have friends that have such
severe problems with their lupus. I am grateful everyday that I'm
no worse than I am. My thoughts and prayers will be with each and
every one of you." Jeanne
"25 yrs ago I was diagnosed with Discoid Lupus
which was terrible at the age of 15 not being able to go out in
the sun as I came out in a very painful and unsightly rash all over
my body but especially my face, but I lived with it until 18 mths
ago I got chickenpox, I was very ill for 4 weeks it spread to my
lungs which I had inhalers & great difficulty breathing I also lost
2 stone in weight,10 mths after I recovered I started feeling exhausted,
joint pain, muscle aches, severe headaches my discoid rash flared
up even in winter and a new rash developed on my cheeks. I went
to see my doctor but got the usual over stressed not eating properly
etc,etc I started taking it out on my boyfriend as I had no patients
at all feeling tired all the time lack of interest in everything,
so I went back to the doctor this time he did blood tests, but they
came back negative. On my third visit I saw a different doctor who
looked at my health records & was gobsmacked that no one had suspected
a Lupus flare, he immediately booked me in to the hospital to have
blood tests for suspected SLE. I am still awaiting the results of
those tests, I was put on a course of steroids which for a while
I felt on top of the world but 10 days after finishing the course
I am feeling the pain. I keep my fingers crossed for 6th May which
is when I am back at hospital and hopefully they can start putting
me on correct medication so that I can try to carry on with life.
Good luck to everyone please feel free to email me for a chat [email protected]"
"I am 21 years old, and know that my age is young
to be present with the disease. My story begins in America last
October, through to December, but started as far back as perhaps
a few years ago. In July 2001, I was experiencing shortness of breath
and sharpe pain when I inhaled. The hospital told me I had Pleurisy,
and treated me accordingly. I got better, and haven't had trouble
like that since, therefor I haven't thought anything of it. However,
last April I wa experiencing signs of arthritic disorder in my joints
and especially my hands and knees. I had blood tests and was diagnosed
with Rheumatoid Arthritis. I was then treated with Ibuprofen. In
October last year, I was to go on an Internship for my course over
to Los Angeles, USA. I went with my best friend, and she worked
at the same place as me over there. We were having a great time
until I started to feel tired and weak. Three weeks before the end
of the Internship, I ended up so fatigued that I was going to bed
at 4pm, and not waking up until perhaps the same time the next day.
Alot of my days had me bed-ridden due to the amount of swelling
that had occured on my feet and ankles. The Ibuprofen I had wasn't
working anymore, and I was getting a rash on my shins and calve
muscles that can only be described as blood veins all clustered
together in a very red mass. When I stood up, the pain would be
unbearable, and I was even helped to the bathroom on human crutches
(my friends) for some of the time. I was depressed and losing weight.
One morning I just woke up and thought to myself that I would have
to get to a hospital. I was going to be flying home in a couple
of days, and I didn't know what to expect or if I was fit enough
to fly. So, I got up, and dragged myself painfully to the bus stop
where I directed the kind bus driver to drop me off at UCLA Hospital
in Santa Monica. I was there checked and admitted for furthur checks
straight away. I called my friend and she brought me my suitcase
and other belongings, and I was there over ten nights in the end.
I had to cancel the flight I had out to England and get one the
week later. I insisted that my friend go on the original one home
because there was no need for her to stay, and I wanted her to get
home since both of us were dying to go back by now. I was alone
in the States the whole time I had treatment. I had a biopsy done
to my kidneys (that are affected) and they told me within four days
that I had Lupus. They did every test I have ever known to me, and
sent me home with a file so thick, it made our health service look
pathetic. I had this to take home to show my doctors, who had missed
such a disease out. I lost 2 stone, and I already have quite a thin
physique, and I looked so fragile. I got wheelchait priority for
the flight though. My parents were worried sick, and I was very
depressed the whole time. I got to call them alot though and my
boyfriend and sister-in-law too. I got a social worker to chat to
and a psychologist and a lot of good doctors. When I got home to
England, my whole life felt like it had been put into perspective,
and I grew up so quickly in such a short space of time. I feel like
I want to fight this and do as much as I can with my life, since
I had my ability to walk and move taken away from me for a short
while made me realise how fragile we are as human beings. I still
suffer from bouts of depression but talking to family and friends
tends to help alot. Sometimes I just want company because being
alone just makes you think about the problem more and then you become
introvert and depressed. I have learned to appreciate life so much
more now, and I feel far more mature in myself now than I was. I
am being treated with steroids, but am being slowly taken off them
over time. I was on as higher dose as 16 tablets a day, but now
I am only on 4. I am being treated with Chemotherapy for the damage
to my kidneys, and to try and suppress this Lupus. I am young, but
the chance of infertility still scares me, so I am looking into
having some eggs taken in the future. I just hope that this disease
will go into remission, and that my children do not end up going
through the same ordeal as me. I wouldn't wish this on anyone. It
has taken me a while to get myself back on track, and I am only
now (4 months after my return from the States) that I can get on
with life. My University life is going strong and I am busy with
that, and then I work at weekends and swim and do salsa during the
week. Exercise is a good factor to help with keeping joints subtle
and breathing in good stead. I eat alot healthier now, and I cut
out alot of gluten products and I feel so much better now because
of it. I have good friends and I make sure I keep taliking to them
if I feel down, because they are there to help me in times of depression.
My Mum and Dad I can't thank enough either. I wanted to let you
know about this story since I believe that the way I found out about
my Lupus was abit more of a stranger situation than just hearing
from the local GP." MM
" I just wanted to share with you a great amount
of respect with the amount of time it took for your diagnosis. Our
daughter, Ashley is 14 and had her 1st flare-up @ 7-1/2 and three
years later she was diagnosed. Then after moving 400 miles to Illinois,
the Rheumi told us he does not know if it is lupus since he does
not see a malar rash and sends Ashley to tears. She's been diagnosed
with 5 conn. tissue diseases and then told it might not be.... It's
hell on her and us. I was active in Michigan and actually passed
three laws prior to our being transferred. They did not see lupus
as a disease as well as October as Nat. Lupus Awareness Month. After
Oct. 26, 1999, they did! I read your butterfly newspaper and hope
to continue. You are an inspiration and a welcomed breath of air.
Ashley is still in a slumber, once she awakens, I want to read her
your story, your pain, fatigue, etc., is her all over. Her ANA was
once a1:360. They put her on plaquenil yesterday and it scares the
heck out of me. She was able to "survive" on steroids and tolectin
600 mg, but the fatigue is getting to her. Since she will be in
high school next yr. we decided to face the challenge and get her
body accustomed to plaquenil NOW so for high school she will be
prepared,,,, I can only pray. I am sorry I took this time up, I
had to tell you how inspired I was and your information warranted
a thanks for the sharing. I bet there are a lot of people who have
endured rude-pompus rheumatologists and just deal with it. We are
still trying to find THAT doctor as you have found here in our new
state, we have not found him or her. We will utilize the one we
have while we seek. The one Ashley saw in Michigan had the patience
of a saint and told us if it were his daughter, he'd not only do
the same as we were, but he'd ask me for advice! He was a blessing.
I told him to drop camp in Michigan and join us in Illinois, he
declined."
"Hi my name is mona. I am from Calgary. I found
out i had lupus in 1989. At christmas time i went into the hospital,
because i gain 102 pounds of water. They found my Kidney problem,
they gave me some medicine. Then i got the lupus rash, my eyes swelled
shut. Then i had 12 grand maul seizures and 1 small seizure in 12
hours. I was in the hospital for 5 months. Just like the rest of
the people on this site, we survived. Now i have a beatiful 6 year
old daughter. It's still a struggle, but it's amazing what a person
can get use to. Living with lupus is a challage. I think a positive
frame of mind is a major key as well. To all the people with lupus
i wish you a future of great health and happiness. thanks"
"Hi, my name is Tanesha Davis. I am nineteen
years old and have just found out that I have been diagnosed with
this disease called Lupus. I found out just after finishing my first
year of college. Some of my first symptoms were swelling in my hands
and feet, tiredness, and pain in my side. I went to various doctors
but all kept telling me that I had carpal tunnel syndrome or RA.
Finally, when I could not take the pain anymore I went to the hospital
where I was admitted for two long weeks getting so much blood work
done and test done. When I found out I was depressed but thanks
to my mother, family, friends and boyfriend who stood beside me
through it all, I have come to face it and realize that I'm not
here out alone with this disease and we'll all get through it with
faith in God."
"My name is Pat - I have been diagnosed with
SLE 20+ years. My husband was in the RAF and we had spent two years
in Malta, came back and I developed a number of symptoms, mainly
joint pain, also hair loss, skin lesions and so on. My Dr at the
time was a Service Medic, tried various treatments, took a lot of
blood. The worst time was when I got out of bed one night to go
to the loo and passed out at the top of the stairs. I woke up to
find all the lights on ( I never bothered with that) and my husband
trying to pick me up. I'd passed out and in falling had really walloped
my face - I was bleeding from the nose quite badly. Anyone who has
lived in quarters will understand when I said 'Don't move me or
I'll bleed on the carpet.' when my husband tried to pick me up.
I was actually bleeding onto the lino which was washable!! Went
into the Medical Centre the next day - I had two black eyes - they
actually had the Crash Ambulance driver take me home. Then I was
admitted to RAF Hospital Ely and it took three weeks to find out
what was wrong. They took blood morning, noon and night!! The Dr
who told me what it was advised me not to read any medical books
as he said treatments had progressed. It's only recently that I've
actually read up on SLE. That was back in 1980 - since then I've
worked full time, had three kidney biopsies - I have Nephrotic Syndrome,
spent time in Hospital etc. I was terrified when I first developed
Lupus - I didn't know what was wrong and I didn't know if I was
going to wind up in a wheelchair or what! I even had to get my daughter
- then aged six to open my tablet bottles - I couldn't operate the
"child-proof" tops!! Since then, I have worked full time - I had
to, my husband left the RAF and I had to work if we were to pay
a mortgage. I have also gained a Private Pilots' License - despite
the CAA's insistance on Medical reports and tests. I suspect that
I'm one of those people who if you say they can't do something because....
will go out of their way to prove that they can. I do get very tired
and I do take a long time to recover from things - had Bronchitis
over Christmas and it is still with me now. My GP would like me
to give up work but until the Mortgage is paid and a few other things
settled, no way can I afford to do that. Hobby Horse, I know, but
there are just the two of us, no dependants, so we would get the
minimum despite paying into the system all these years. I have to
keep on working. As they say - keep on trucking!!!!!!!"
"hello my name is nancy I'am a 36 year old woman.
I was recently diognoised with lupus and never did I ever suspect
that this was the reason for all the pain I was feeling in my arms.
My doctor sent me to have a test done on my nerves which was negative.
And then he decided to do blood tests on me. He ran an ANA and that
was positive then he ran a AntiDNA and an anti smith test and the
Anti DNA came back positive and he told me I had lupus. I found
out on Christmas Eve this past year 2002. I have been praying to
God every day that he heal me. I guess I'm just hoping for a miracle
but in reality I know that may not be possible. I still have faith
in God and pray that I will be as lucky as those on this site that
have lived with this disease for many years. See I am a mother of
four and my youngest is only 7 years old. My husband has been supportive
and is always picking my spirits up and I am grateful for that.
The only problems I have now is the pain in my arms and shoulders
it comes and goes my dr. says I have a mild case right now but he
is monitoring me on a monthly basis. I am hopeful that it stays
there. I am grateful for finding this site because I have felt lost
since I found out and its nice to know that I can read about other
people with the same disease and see how they are coping with it.
If anyone would like to talk more about this here is my e-mail [email protected]"
"Hi, my
name is Efi. I am truly thankful to this site. For the first time
since I've been diagnosed wtih SLE, I do not feel çrazy'or that
I'm exxagurating. Just like most of you I have experienced really
bad joint pain ( to the point where I could not brush my teeth or
my hair) and fatigue. I know what it feels like not being physically
able to get out of bed in the morning and then feeling guilty and
blaming myself for being 'lazy'for missing classes. I went to my
GP repeatedly with complaints of migraines, joint pains, strange
weight gain, colds and so on. And he would not believe me. I was
simply told to go home and rest. That it was all in my head really.
I am so glad that I called that taxi and got to the emergencies
on the 17th of Novemeber. During my stay in hospital, I've been
on a very high dose of steroids, I've suffered from blood clots
high blood pressure, 2.5 weight gain in stones. Not to mention the
horror of watching my own body changing, like it was not mine, like
it was pocessed. I am grateful to my doctors tho who were more than
nice to me and so patient. I also want to thank my friends who were
visiting me almost every day. Their sence of humour kept me smiling
through the hardest times. I don't know what I would do without
them. I've been out of hospital for about 10 days now. I feel a
lot better. Í'm back to my old size and for the first time in ages,
I feel like there is hope and I'm really looking forward to finishing
my degree :) If you want to contact me, please feel free to do so
:) here is my email: [email protected] :) xx ."
"Hi, I
am a (young at heart) 48 year old "lupie" and would like to make
contact with other lupies. It's the old story - took ages to be
diagnosed, then found out that the MS diagnosis was wrong, then
no diagnosis at all, next bad flare, inflamed brain, ended up locked
up until they knew what was going on. Finally it took a psychiatrist
to come up with the answer. He said this is not mental, its medical
and immediately ordered bloodtests. That 2 weeks was horrible but
i had to go through it to reach the diagnosis SLE. Then i was sent
to see a rheumy for tests and bingo positively SLE, although i had
no idea what it was. When i asked the rheumy he said go to ward
4 and read the leaflet, it's too complicated!! Well, all this has
happened over a 3 year period. I've since had infusions of cyclophosphomide,
daily steroids, immuno-suppressants. My symptoms change all the
time,terrible fatigue, muscle and joint pains, iritis, bad headpains,
burning, numbness, pins and needles, light sensitive. It has affected
my heart and I have to take drugs for that. On top of it all, just
before Christmas, I get shingles. Will it ever calm down. Now on
drugs for nerve pain!!! Sometimes, I really don't know how I've
come this far and sometimes the depression is hard to bear but I
have two daughters to think about. My partner left me in September
this year, said she couldn't cope with the stresses of my illness.
We had just had a blessing 3 months before to show our committment
to each other but it's all gone wrong. Friends and family have been
very supportive though. I have to thank my blessings. I hope I have
not bored any of you but I think corresponding with other lupies
who may understand will help and just maybe i can be of some help
to them.!!!!" Sue Fox
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