Just Diagnosed -- very scared

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New Member

Date Joined May 2009
Total Posts : 2
   Posted 5/15/2009 11:50 AM (GMT -6)   

I was just diagnosed with lupus last week, and I am feeling really frightened about it. I cry on and off, and am not coping well with the reality of having a chronic disease. I may have had it for years, just wrote off my symptoms as stress-related.

I'm afraid of dying, of course, but also afraid of disfigurement and disability. I have two kids, and I don't want their childhood to be all about their mom's illness. I want to be healthy forthem. I want to live long, for them. And I hate not having control over those things. That's what makes me feel so afraid. I feel like I can't protect them from this.

I'd love to hear from people who have been living with the illness for a long time, just to know that it is something you can live pretty normally with.

Maybe I'm stuck on stuff that doesn't matter, like having to wear geeky hats day and night, embarassing my children, not being able to ride to the park whenever they want to go. From there to organ failure, I guess, I'm afraid of it all.

Now, gotta stop writing about it, because this seems to be making me panic even more.

I could use some help.


Veteran Member

Date Joined Sep 2005
Total Posts : 2573
   Posted 5/15/2009 1:26 PM (GMT -6)   
I spent 15 years undiagnosed and my life was less normal during those years than in the 4 since I have been diagnosed. I have not had serious organ involvment thus far which I am told indicates I likely never will. If you look at my signature you will see I have more than just lupus going on. I also have a 1yr old. I expect to live to see my grandkids grow up. I may not be able to do the outside stuff during the day but that doesn't bother me much because my husband can. There are others here who have lived with lupus a long time.

BTW you do have control over how well you do and what your life is like. You take the medication your doctor prescribes and take care of yourself and that is how you control things. If you fail to do those things you will have no control and your life will be miserable and possibly short depending on organ involvment so do take your meds and do take care of yourself. It is that simple.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar

Regular Member

Date Joined Oct 2007
Total Posts : 323
   Posted 5/15/2009 2:31 PM (GMT -6)   
I'm sorry to hear you are diagnoed with this disease!!!
I know most of us had the same reaction scared, can we do this or that with our children, yes you can just know your body when you feel tired or over do yourself. Tell you children that you need to rest if their to young nap when they do.I was diagnosed 21 yrs. ago my oldest was 4 and youngest 3 months old. If your on plaquenil which I'm sure you are on, it will take about 6 months to kick in.. Well I'm off to a wedding, and I'm going to have fun with my family. Take Care
Asthma,Lupus,H.B.P.,Dermatomyostis,Gastrparsis,Acid Reflux   
                Panic Attacks,Osteopenia,Thyroid  
  Advair,Diovan,Actonel,Prednisone on and off Eye Drops,VitaminD.     

Veteran Member

Date Joined Jan 2005
Total Posts : 8616
   Posted 5/15/2009 8:34 PM (GMT -6)   
Hi Iris,

Welcome to the forum. First, you should be aware that most people who post in forums are in a bad spot with their disease or they are newly diagnosed and looking for info. I just don't want you to read some of the posts here and think that everyone with Lupus is so bad off. Lots of us live a life so normal that most folks around us don't even realize that we have a chronic illness.

The sun: It becomes a game. I am SO glad that I understand how the sun makes me sick. I do avoid it . . . but I've made some memories 'because' of my sun intolerance. I frequently grab my grand-kids, spur of the moment, and we dash off to see the sun set at a local park. At this park, there is a big long sliding board, built into the side of a hill. . . so no one can fall off!! It's fantastic. The last couple summers, I've actually joined the grands on the slide . . . . WEEEEEEEEEEE what a blast!!! They laughed and laughed . . . until I flew so fast one time that I wizzed down that slide hit my rear on the ground, bounced and flipped onto my face! I heard "Nanny! Nanny! are you ok????? . . . until I got up laughing my head off!!! We also have campfires in the backyard and do marshmallows. We've gone out very early in the morning many times, in search of a spot to catch a sunrise, but haven't found that great spot yet! But the search has been fun anyway.

A lot of this is just what you make of it. Your kids will take their clue from you. I had lots of trouble while my kids were younger, but was told it was depression. . . so I suffered with the pain and fatigue for many years before dx. I'm glad you are getting some help. You kids will be fine! They will learn some great things through all of this. . . for sure!

Glad you found us!! Check out the posts in Lupus Resources (link at the end of my signature).


In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator

Veteran Member

Date Joined Dec 2008
Total Posts : 2386
   Posted 5/16/2009 2:44 AM (GMT -6)   
Hi Iris, Welcome to this group! I don't even have Lupus (well that is debatable still lol as the docs are trying to find what I have. My body is doing the hide in go seek), but my medications are the same that the group welcomed me in awhile ago. You will find a lot of caring, loving support. People who actually understand the hardships of having auto immune diseases. Let us help you as you go through this hon. Again, Welcome.
Smurfy Shadow/Desirèe 
DX: Wegener's Disease, Migraines, Diabetese Type II, PCOS, Lactose Intolerant, Benign Heart Murmer, Depression, Asthma, Asperger's Syndrome, Necrotizing Gramultous Inflamation in eye, A.D.D., Acid Reflux, Tumor Behind the Eye, Carpal Tunnel, Fibromyolgia, Clasterphobic, Arthritis
Medications:  Tri Nessa, Percocet, Metformin, Prilosec, Protonix, Zantac, Advair, Cingulair, Albuterol, Calcium + Vitamin D, Pro-Air, Pepcid, Rolaids, Zofran, Compuzeen, Refresh Plus Eye Drops  PRN: Epi-Pen, Albuterol Nebulizer, Benedryl
Undergoing Radiation Taking Lorazepam (Ativan) on Radiation Days

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 5/16/2009 10:31 AM (GMT -6)   

You've come to the right place to get help, Iris. I'm so sorry you're in such an awful place now, but like Rosie said, many lupies lead a normal life. Especially if you take care of yourself, i.e. take your meds, stay out of the sun, get plenty of exercise, and eat well. You didn't say what meds the doc gave you, but once you begin treatment, you're likely to feel better. Rheumatologists will tell you that early diagnosis is critical because many of the meds can stop the progression of the disease.

Although I'm not as active as I once was I lead a pretty normal life. I've had lupus for years and have no organ involvement, so it's most probable that I never will.

It has to be tough having lupus and raising children at the same time, but your kids will understand any limitations you have, such as going out in the sun, and will be stronger for it. There are lots of products that can protect us from the sun - I just bought a UV treated umbrella, and I have a camping chair that has a cover. I take them to the park or other events where folks are standing out in the sun. Even non-lupies should use them!

I hope Bill (Bsmine) chimes in and tells you his story. He was bedridden and now hikes and lives a real active life, and is in his 60's.

You can do this Iris! And we are all here for you as you go down this road with us. I'm 60 and am as happy as I've ever been. Tell us more about yourself so that we'll get to know you better.

Hang in there.


SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

New Member

Date Joined May 2009
Total Posts : 2
   Posted 5/16/2009 11:54 AM (GMT -6)   
Thanks so much everybody! You are so kind and generous with your stories.

At this point I don't know what's the lupus and what's coming from panic. I just had my baseline eye exam, and I see my doctor on Tuesday to get my prescriptions, so I'm not on anything yet, but I'm pretty sure it will be prednisone. I wasn't sure if was more afraid of the disease or the side effects of the drugs, but after listening to you all I guess I have to make peace with the drugs since the disease is the enemy.

The symptom that got noticed was an ugly rash on one hand -- especially around the fingernails, then the bloodwork and urine came in positive for lupus proteins. Probably I've had it for years. I was a college professor, but a couple of years ago I had a bad PAP, and had a procedure for cervical cancer, and started having stress symptoms (tight chest, difficulty breathing) from the the stresses of the cancer and my job (I thought). I also developed a chronic pain in my chest that my doctor diagnosed as costochondritis. He put me on ibuprofen and sent me to a biofeedback guy when I didn't want to go on anti-depressants. It was a miserable time, but nobody suggested lupus.

I quit my job to try to feel better, which after nine months or so I did. I have been pretty much tired all the time since my daughter was born six years ago, but I never wondered about that. It just seemed to be who I am. Since the diagnosis my chest has tightened, my breathing problems have returned, so I think that part is stress related -- but I'm not sure. I'm crying a lot, and having bad dreams and waking up in the night with my heart skipping beats, from fear I think. Or is that the lupus too?

I don't want to go onto anti-depressants, especially when I'm about to put my body through the stress of steroids -- I am so sensitive to chemical changes in my body. The caffeine in a cup of tea will keep me up half the night. I'm afraid of personality changes. Heck, I'm afraid of everything.

My rheumatologist just stared at me when I started to cry in her office after the diagnosis (and I was hardly crying). then she said, "Having diabetes is worse." When that didn't work she said, "You could get hit by a bus tomorrow. Nobody knows what's going to happen." I wasn't sure what she was going for with that one! It just scared me more. The whole point of the tears was the uncertainty. Yes, life is always uncertain, but lupus really shoves that reality in your face.

My bottom line: I want to be a good mother. I want to stay alive and be healthy for them. I don't want it to affect them. But if I can't find a way to cope with this fear, it will affect them. I need to stop crying. I'm crying as I write this. I read your posts and I appreciate them so much, but I cry. How do I make that stop? How long did it take you all to get over the fear and just get on with living?

I really appreciated hearing about the ordinariness of your lives. I need to know I can give my kids an ordinary life while I deal with this disease.

Thanks so much, Iris

Forum Moderator

Date Joined May 2005
Total Posts : 6946
   Posted 5/16/2009 2:10 PM (GMT -6)   
Welcome to the forum!

I do want to chime in a bit about the anti-depressants. Certainly *do not* take them from a doctor who thinks depression is the cause of all your issues -- it isn't!

However, lupus itself does produce some hormonal changes to the body, and often causes a chemical depression. Also prednisone (or other corticosteroids) cause hormonal changes that can contribute to chemical depression. Add to that the natural human reaction to acquiring a chronic illness, and a mental depression can step into the picture as well.

So, if your rheumotologist, after treating your other symptoms, suggests an anti-d, please don't dismiss the idea without a discussion with the doctor. Many of us have found it does help with fatigue and some of our other issues.


Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, Seasonal Affective Disorder, Depression, Herpes Simplex 1
Plaquenil, Prednisone(15 5mg), Piroxicam, Xanax, Trazodone, Boniva, Wellbutrin, Valtrex, Vicodin, Prilosec
Links: Diagnosing Lupus (4 of 11), Lupus.org Info, Lupus Resources, Help HealingWell, Drug Interactions

Life is far too important to be taken seriously. –Oscar Wilde, 1882

Veteran Member

Date Joined Mar 2006
Total Posts : 2570
   Posted 5/17/2009 10:37 AM (GMT -6)   

Stress can be one of the worst things for your body so it's a good thing you're focusing on it. I also went on Anti-d's and as soon as they kicked in, my unremitting tears stopped. I also see a behavioral therapist weekly and she and I work mostly on my lupus issues. She has helped me learn to manage my disease and the stresses that go with it. So between Cymbalta, my therapist, and this support group, I manage pretty well.

I had a class V cancer of the cervix 32 years ago and thyroid cancer 20 years ago. Nothing is going to beat me.

I too am very sensitive to chemical changes in my body and I make sure my doctors know that. If it takes one pill to help someone else, I can make do with 1/2 a pill. My rheumy is very aware of that and as a result, when we try a new med, she always starts me out on the lowest dosage. So tell your rheumy, if you haven't already.

I hope you'll find that talking us all of us here will relieve some of your stress. Journaling and meditation help too. So can a walk in the park with your daughter.

Hang in there Iris. You're among friends here. There are worse things in life than having lupus, and you'll find that is is possible to have a happy life even with a chronic condition. I hope you're having a good day.

SLE, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.

prednisone, plaquenil, arava, neurontin, synthroid, triamterene, actonel, niaspan, tri-est, cymbalta, tricor, acifex

Post Edited (PattyLatty) : 5/17/2009 9:40:18 AM (GMT-6)

Angel MJ
Regular Member

Date Joined May 2009
Total Posts : 36
   Posted 5/17/2009 2:40 PM (GMT -6)   
hello iris
firstly here is a ***great BUG HUG***
now take a deep breathe and remember that it is normal to go thru all sorts of emotions! try avoiding panic attacks!
i found my SLE dx in 2003 a 'relief' ... all those symptoms, weird illnesses finally explained.

please hang in there ...

you have found a place where you can come and people have been or can understand what you are going thru.
it is true that you can have a normal life with lupus, any kind of normal you want!
somtimes minor adjustments can give you a better quality life e.g. suncreen/avoiding high uv means less sypmtoms,
learn to avoid triggers
with this dx you have a way forward with treatment options that have been successful with a lot of fellow lupies
trial & tribulations is on all our roads ahead but i think it's how we face them is how we get thru on the other side - i say bring it!
remember to give things time to work, there is no 'miracle cure' but the meds can alleviate symptoms and help manage things,
sometimes we come off, sometimes we need a little help (prednisone etc saves lives ... ive experienced pericarditis)
i am now med free but will need to see gp, ent, gyane. then find new rheumie maybe gastro entorologist?
i manage thru the *flares* hubby mostly v.supportive when he isn't i pick a fight threaten divorce then we dry our tears (then the migraine)
always ran to doctors when i thought *i'm loosing it* but always got thru, still go but not as much (finances - got into big debt and not keen on doing it again) doctors mostly treat me well and offer support and various options!
message boards are really supportive and insightful places

arm yourself with knowledge
organ involvment is the thing to watch for but don't think everyone gets this (wish i could remember the statistics)
i hope you find a good rheumie, one that you can talk to and will also help you thru this period
ive learnt that i can live with lupus and always find a way to cope, sometimes i have to find new ways but i live the challenge
Treat yourself well (eat, rest, take your time, don't push too hard)
you are you own best advocate as only you can hear, feel, listen to your body ... tests only say so much
take a rest/nap when you need
don't feel guilty when you can't get to that chore or look your best when doing grocery shopping ... who cares.
if it doesn't feel good then note it down - amazing how much easier it is to see patterns when you 'journal it'.
kids are amazing bundles of energy - maybe therapy can help everyone talk about things? or a support group?
try explain things to family - what they can do to help ... chores can be shared and sometimes you get/need days off
above all remember you will be okay!
sometimes even better.
not all days are bad days!

sorry if it sounds like a 'how to' list but just putting it out there ... i live it and i love to live (mostly) - hope you know what i mean!
ps: maybe google 'the spoon theory' made me think about things
pps: quiting my corporate job and working with hubby from home was the best health decision i ever made!

Post Edited (Angel MJ) : 5/18/2009 4:15:15 AM (GMT-6)

Forum Moderator

Date Joined Jun 2008
Total Posts : 1469
   Posted 5/17/2009 5:30 PM (GMT -6)   
Hey Iris! Welcome to the forum! I also need to say that everyone on here is so great and encouraging! Everyone has said wonderful advice, when you need encouragment, people on here know just what to say! I was diagnosed back in 07, so I haven't had lupus a long time but the one thing I have learned is listen to your body. You know your body better than anyone else and you know when something isnt right. Also, inform yourself as much as you can, make sure you keep all your scheduled apts for your rhuemy and tests (if possible). Many times if you get blood work done and there is another problem, it will be caught in its early stages and can be controlled very well. Hope you are had a nice weekend :)



21 years old...Systemic Lupus 11/07, lupus nephritis 01/09, raynoids 03/08, Carpal Tunnel 03/08

Ultram, Prednisone, Cell-Cept, Lisinopril,  Ambien, Flexeril, Darvocet, Ferrious Sulfade, Calcium, Vitamin B12, Aspirin 81 mg, Vitamin C

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