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mortifiedat52
03-29-2009, 11:15 AM
i'm a 52 year female.. living alone.. a career girl in the texas oil & gas industry.. just diagnosed with lupus this month.. and i am mortified..

only a few friends and a few family members know.. i haven't told anyone at work and so far, and i haven't missed any work yet.. and no one has really noticed except for my eyes (i have episcleritis or blood shot eyes caused by lupus).. i'm saying the redness is due to allergies..

anyway, my hands (joint pain, reynaud's syndrome), feet, jaw, and eyes are the main parts that are affected right now.. i've been taking cellcept and prednisone for the past 3 weeks.. it seems that my condition has improved somewhat with these drugs, but the improvement has been sporadic (good days/bad days) and extremely slow in coming.. i had hoped for faster and more steady improvement..

would appreciate the wisdom that anyone can provide at this point.. some questions i have are: how long does it take for these drugs to work? and can i expect complete relief from the joint pain, soreness, & swelling at some point or is this something that never goes away? will i be on drugs for the rest of my life now? is international travel a problem when you have lupus? i was supposed to be transferred overseas next year with my project; is that an unlikely possibility now?

I'm eating healthy, resting, taking supplements (fish oil & other anti-inflammatory type supplements), doing yoga, tai chi, lifting weights, and doing cardio work... is there anything else i should be doing to try and improve my condition?

I'm so afraid of this thing.

sasha
03-29-2009, 11:32 AM
Hello... I'm 33 years old and I'm from Portugal. I was diagnosed with lupus on 2000 just when me and my husband we were thinking about having children...
My first week it seemed like hell... I didnīt knew a thing about lupus and having a disease forever it felt really bad!
Then I managed to stat talking about it with other persons including my family and my colleagues at work and they were very supportive even though they did not know about lupus too.. Anyway it helped.
It is mey first time in forums like this and i hope to be able to talk with other persons with same disease as many times it seems that no one understand us... as we look good but manytimes we are not...
I realy like to begin to talk about this with some of you...

Angel Oliver
03-29-2009, 01:12 PM
Hello 52 yr female and Sasha,

I can fully understand having a successful job and keeping your sickness from everybody.But sometimes that can put more stress on yourself than actually help you. I am glad you both have found this wonderful forum. Please both ask all the questions you need to know, whatever they may be. I am not so knowledgeable as i am learning about Lupus as i go along too. But please dont suffer in silence because we are all here for you both and will help you through it. What i carnt answer, just hang in there and watch the many members come along and help you with their knowledge and answers. If you both look through the site, you will find 'stickys'.If you click on them all the answers are in them. If you can not find them, dont worry, we will answer them for you. Please know...YOU ARE NOT ALONE!!

Gentle hugs
Angel.xxx

P.s I am Angel aged 39 in the UK. I have M.E/Chronic Fatigue Syndrome and a few other things, but i'll tell you about me another time.

mountaindreamer
03-29-2009, 03:29 PM
hi mortified,

your username is exactly what happens with this diagnosis. you ask good questions, and i wish i had good answers. logically speaking, we have a chronic illness....i think that says it all. But, as a chronic illness, SLE can go into remission for years. So, you may or may not be on medication forever, you might be reminded each day that you have this thing, and yes you might find it difficult to maintain the same level of energy to participate in the same amount and level of exercise, fun, work, love, family, animals, gardening, etc. etc. etc.

i am 56, have always supported myself and my children. everyone is grown now, i am here by myself, and looking at buying a condo in atlanta so i will be close to my drs. and hospital. i can not tell you how drastically my life changed when this stuff hit me in 1996.

i guess i was pretty blunt here, but "it is what it is". however, (and this is a huge benefit), this group has absolutely helped me figure how i am going to maintain a life in spite of this craziness. there are real issues that we look at, and share with each other....we all learn.

you say you have been taking cellcept and prednisone for 3 weeks. are you seeing a rheumatologist, and have you been put on Plaquenil. It takes plaquenil about 5 or 6 months to start working, but it can bring some relief and reduce the amount of prednisone that we take. i would caution you to read some of the threads here about the long term use of steroids and immune suppressents. there are even some members who are incorporating natural supplements to help with symptoms of SLE. You can find threads on this subject.

also, make sure you avoid sun light, and florescent lighting. if you work under conditions with UV rays, you need to protect yourself...there are several threads about what we do to protect ourselves.

Sasha, i am so very sorry that you have been handed this card....it is a very individual disease and each of us is affected differently. we will all hope that yours is one of the cases that goes into remission, and that you continue along your career path.

goodboie1
03-29-2009, 03:55 PM
Hi Mortified-

I'm new at this too, but I wanted to welcome you and offer some support. It was my personal decision to tell everyone... work and all. I find that, for me, holding it in just causes me more stress. I know that you are probably worried that you may be seen in a different light. Just hang in there and try to get as much information as you can.

Hopefully your meds will kick in soon and the Lupus will go into hiding. As with everyone, you will have good days and bad. Don't be afraid to ask for support when you need it. Having a good support system can really improve your outlook. And you've come to the right place. The people here have a wealth of knowledge and compassion.

be well-
Tracy

Bonita
03-30-2009, 06:57 AM
I am new at this too only diagnosised in 2007 after spending 11 days in the hospital and many many tests. You will have bad days and good days and from time to time the doctors will change your meds on what is happening to you. I have no one other than myself that has this diease and have found this site to be very informing and am greatfull for everyones input. So hang in there and others are thinking about you Bonita:unsure:

Oluwa
03-30-2009, 03:35 PM
Hi M52...

Welcoming you with a warm hug...

Lupus....hummm. You can live with it, lead a full normal life...be in pain...learn coping skills and still live a normal life.

Sometimes the pain gets the best of us...and sometimes the constant, chronic dull can be a nag....

Lupus treats us all differently..me I always have joint pain to a degree. I have what I call my norm. Stiff and achey...tolerable, a mild nag...intermittent brain fog, rashes...fatigue. Currently I just came of of a flare...and I am enjoying my freedom. When a flare strikess...well, I struggle...

I don't see what travel would be an issue. You mean like a personal issue or health issue? The latter nope, but personally, that would be your call...

Sounds like you are doing the physical the, exercise aspects for home care....Building muscle is great, supports the joints. You body will tell you when too much is to too. Just protect them....

You learn the balancing act...to orchestrate your energy for the day, so you have much for tomorrow...

Decompress, deflate your stress...meditate? Learn to manage pain...

Eat an anti-inflammatory diet helps...may a little, may alot...Bright vegetable fruits and vegetable. Olive and flax seed oils...salmon....Things I follow but not to the letter...

Keep a wonder support system....Learn all you can about this disease. Take you medication on schedule, as prescribed. See a doctor regularly...report any and all new systems...

Two key words..prevention, manage. They can make all the difference in the world....

Read about, how we are..how we cope...several Sticky at the top of many thread with suggestion on how to manage the disease...

Remission isn't a dream...it exists...

We are here for you....

Hugs...Keep looking for your wellness...
Love,
Oluwa

Ria0331
03-30-2009, 05:54 PM
i'm a 52 year female.. living alone.. a career girl in the texas oil & gas industry.. just diagnosed with lupus this month.. and i am mortified..

only a few friends and a few family members know.. i haven't told anyone at work and so far, and i haven't missed any work yet.. and no one has really noticed except for my eyes (i have episcleritis or blood shot eyes caused by lupus).. i'm saying the redness is due to allergies..

anyway, my hands (joint pain, reynaud's syndrome), feet, jaw, and eyes are the main parts that are affected right now.. i've been taking cellcept and prednisone for the past 3 weeks.. it seems that my condition has improved somewhat with these drugs, but the improvement has been sporadic (good days/bad days) and extremely slow in coming.. i had hoped for faster and more steady improvement..

would appreciate the wisdom that anyone can provide at this point.. some questions i have are: how long does it take for these drugs to work? and can i expect complete relief from the joint pain, soreness, & swelling at some point or is this something that never goes away? will i be on drugs for the rest of my life now? is international travel a problem when you have lupus? i was supposed to be transferred overseas next year with my project; is that an unlikely possibility now?

I'm eating healthy, resting, taking supplements (fish oil & other anti-inflammatory type supplements), doing yoga, tai chi, lifting weights, and doing cardio work... is there anything else i should be doing to try and improve my condition?

I'm so afraid of this thing.

Hi,
Im so sorry that you are dealing with all this pain. To answer some questions with the cellcept i can't say how long it will take cause I don't take that med but the Plaquenil can take upto 3 months to fully work in your system. I guess full relief will depend upon how your system handles the meds I can't say. As for taking meds for the rest of your life I would imagine so but again that is a guess so don't quote me on that. Traveling I imagine is something that you can do but talk to your doc to make sure that you 2 are on the same page. Getting enough rest is very important and with exercise take it easy and don't over do yourself. I hope that that helps a little. I with you the best hope you start to feel better.

BonusMom
03-30-2009, 07:28 PM
Oh Mortified, how I feel for you!

I am early 40's with a challenging career, a DH and 5 children-3 by choice and 2 bonus daughters. The three oldest are in/graduated from college, 17 year old graduating from high school in May and a 13 year old just here part-time.

I turned 40 and thought life didn't get any better than this-kids almost grown and mama can concentrate on ME! Life had other ideas.

I started having problems with my digestion and was eventually diagnosed with gastroparesis. I lost some weight (yeah) and life went on. My symptoms would wax and wane. I called the episodes of vomiting and nausea "flares" and this was before being diagnosed with any AI issues.

Fast forward to last summer... I was asked to participate in a gastroparesis research study. I "donated" 25 plus vials of blood and was notified that some of the tests were abnormal. I was referred to a rheumy and the SICCA study at UCSF. On Dec 18th I was diagnosed with Lupus and Sjogren's Syndrome. Finally, all those symptoms I'd had that I had attributed to getting older and gaining weight had a name.

I mourned the diagnosis because my only real knowledge of SLE was associated with a pharmacy malpractice case that I'd worked on in which the plaintiff had advanced SLE with kidney involvement. He died shortly after the case settled.

I had a tough time wrapping my head around it all, especially since I'd had none of the "classic" symptoms of SLE-no malar rash or kidney issues and the brain fog/fatigue was making it hard to comprehend/retain information. Let me tell you that this Forum and a good rheumy saved my sanity.

I started Plaquenil in January and a low dose of Prednisone in March. Finally, the fatigue is lessening. I do have hope for the future once again. I've not gained weight beacause of the Prednisone. I did seek out the help of a therapist at the beginning of the month because I was frustrated that the Plaquenil hadn't kicked in.

Interestingly, the therapist and I haven't even touched on the medical issues yet and are discussing the upcoming "empty nest" and how I'm going to fill my spare time :)

Point is-there are meds that, although they take some time to start working, help lessen your symptoms. SLE isn't a death sentence. It affects everyone differently. Your body will tell you when you need to scale back or opt out.

Do as your doctor tells you and don't be afraid to post questions on the Forum. The only silly question is the one that you don't ask.

I didn't intend to go on and on, but wanted to offer some hope. Welcome aboard!

Grime
03-31-2009, 06:57 AM
Welcome
I'm one to the new ones here and was told I have Lupus at the age of 64. I'm just on some creams for the rash now until Thursday when I see the rhuemy.

I would tell everyone about your lupus. We understand cancer but not lupus. You will find some that you thought were friends will now move away thinking that they can catch lupus. Others that you never thought would be your friend will become your support. My own children are not very supportive. My sister I understand her feeling. When we were kids we were not allowed to be sick. We didn't take a pill for anything. Down deep inside her she really cares just doesn't know how to show it. Lisa my wife is very supportive and caring. I have a few friends and when I told them they became the family that I never had before. The love and support from them is something that a person like me only dreams about. My point is give them a chance.

I assume you are in the Houston area being in the gas and oil industry. We are only a couple of hours away.

The only advice I can offer is to not let the lupus get to you mentally. Don't be afraid of it. Live life to its fullest. I love to sail and this Texas sun is harsh but I'll do what I need to do to cover up and put on sunscreen and go sailing. Its what I love to do and lupus is not going to take that away from me. I'll fight it every step of the way. One more thing. Forget the stress. We seem to stress out over things we can't change. I can't change the fact that I have lupus so I'm not going to worry about it.

If I upset anyone with my comments I do apologize it was not my intentions.

sick n tired
03-31-2009, 01:25 PM
Hey Mortified,

I am a fellow Texan with Lupus...I am a 47 year old female..was dx'd October 2007...I am in the DFW area...
there is another person in Crawford, Texas...she should be along shortly.
Sorry to hear that you are feeling so poorly..I also am having pain in my jaw, eyes, etc....
yes, dry, bloodshot eyes can be due to allergies, but it also can be an autoimmune disorder causing it...I go back and forth there..I have noticed that possible dehydration can make it worse.
Sometimes it takes some time for the doc to find the right blend of medicine before we start responding and then sometimes it just takes time on them before, too. Are you going to a Rheumatologist? I ask because my primary care doc diagnosed me and wanted to treat me, but I chose to go to a specialist. I can understand you keeping quite about it, but like Angel says, you might want to confide in someone...my family wouldn't have believed I was ill unless I went to a rheumy.....
Where do you want to be stationed? Perhaps your Rheumatologist can find a Rheumy where you are going...

It may take some time, but hopefully you ill go into a full remission..there are some people who have said they were in a remission for years...I personally haven't found that happening to me, but there are times when I have felt almost normal in the fall.

Take Care...

cptnblah
03-31-2009, 02:36 PM
I agree with Grime, I do my best to not let Lupus and all the other issues I have rule my life. When early on with my Rheumy, she told me that I will have to stay out of the sun as much as possible. I reached into my coat pocket and pulled out a pen and reached out to her. She looked at me puzzled and asked, "What is that for?" I looked at her straight in the eye and said, "Doc you do not understand. I am a boater. Use this pen to sign my death cert cause I am still going to boat if it kills me." At that moment she realized that I was going to be one of those problem patients that will not lay down quietly.

We have to be able to do what makes us happy!!!!!!

sick n tired
03-31-2009, 02:55 PM
Amen Grime and cptnblah,

I love how you say it cptnblah...I was a water skiier...I even got to champion level. Being on the water, the freedom, feeling the wind..oh I wish I still had a boat, but I think it died with my father.

Now I play tennis when I can walk. It is hard not to go outside...of course I am the only woman out there covered up and burning up..but I do it.

I guess the point is, Mortified...we have to try to find out how to live. The first many months that I was diagnosed, I never did anything...this year I have been learning how to live with this illness..

Grime
03-31-2009, 03:27 PM
:-) Cptnblah, I love it you sound like me. The doc ask me how the itch pills were working. I told her I didn't know as I gave them to my dogs as they itched more than me. She looked at me like I lost my mind. I was having skin cancer removed off my face and I ask the doc if I could watch. He wouldn't let me watch and then I asked for sunglasses and he would let me have a pair. So I just flurted with his assisten. She had pretty eyes. The three of us had a blast while he cut on my face. No big deal for me as I have done csections on cows along with other surgery work on them. One cc of LA 200 and you don't get a cold for years. Now you all know I'm nuts.:wacko:

The other night when I took Lisa to the emergency room the staff were not friendly at all. The doctor didn't even address her by her name. I wanted to ask him if he has seen the movie Patch Adams and if not he could learn alot for it. Lisa wouldn't let me.

I'd better go eat before the white jacket arrive.

mountaindreamer
03-31-2009, 07:46 PM
david, you are a bonified hoot. life with you must be full of laughter.

sickntired, i too grew up water skiing. i did not compete and certainly was not a champion, but i loved it. i taught every person in my family plus extended relatives how to ski. i had my girls skiing by the age of 5. i loved it.....had to give it up in 1996 when my hands hurt too bad to hold on to the rope.

yes, i love boats....now i go for moonlight rides

neat that we have this in common.

ashleybaby715
04-01-2009, 05:05 AM
hi mortified.
first off, i wanna say your not alone!! ...just look, we're all in the same position as you.
also, you don't have to hide the fact that you have lupus. it actually makes it alot easier to be open about it.
i sometimes laugh because it seems other people are like uncomfortable talking about it to me, meanwhile, im so open about it.
its like people are afraid to say the word 'lupus' around me... but in reality, i know i have it,theres nothing i can do but take my meds and manage it.
but im not going to live life dreadfully...
i dont think that international travel would be a problem. just take your meds with you.
i will be going to Punta Cana, Dominican Republic this summer for vacation! im not letting lupus stop me from doing that!!
your in my prayers, and feel free to message me !

Saysusie
04-01-2009, 01:01 PM
Hi Mortified..
You've already been given some excellent advice and information about this disease. Lupus is a very difficult disease because it affects everyone differently. No two persons have the same symptoms and no two treatment regimens are the same!
There are some who achieve remission and are able to stay in that state for months to years. There are others who never achieve complete remission, but do find some relief from SOME of their symptoms. Then, there are those who never achieve any form of remission at all, and are symptomatic at all times.
There is no way to say who will suffer what symptoms, who will achieve remission and who will not. All that we can do is to find a treatment regimin that provides the most relief for our symptoms, make appropriate lifestyle changes in order to avoid those things that could cause flare-ups and become educated about the disease and how it affects us. This support group is here to help you in all of those areas :yes:
There are some pretty standard treatments for Lupus that many of us are on, they include corticosteroids, immunosuppressants, NSAIDS, and anti-malarial drugs. For many, this combination of drugs usually yields positive results within a year. There are some medications, in the combination, that are accumulative and must be given many weeks, to months before significant results are seen.

Having Lupus teaches us to be very patient, because the disease can unfold slowly and drugs take time to work. In the meantime, we are always here to help you in any way that we can and to answer all of your questions to the best of our abilities.

Welcome to Our Family
Peace and Blessings
Namaste
Saysusie

cptnblah
04-01-2009, 03:11 PM
The bottom line is...1st of all, what we have varies from person to person. The docs are doing what they can to help but as I say it, "It is not an exact science...otherwise they would not say that the doc is "Practicing Medicine"". I challenge anyone to dispute that one ROFLMAO!

2nd...you have to find ways to cope and be able to do the things that you enjoy. Even if you have to modify some to do it. I have had a 24' cruiser for the last 3 yrs that we keep in a slip in St Joe Michigan. This spring I bought a 17' bow rider to be able to trailer. I plan to possibly sell the bigger boat next spring cause it is getting harder for my wife and I to dock. Last summer we mainly used it for a nightly get away and used only 3/4 of a tank of gas. I guess what I am saying is yes...you may have to change some things in order to do your favs easier but it is not the end of the world.

Good Luck!!!

mortifiedat52
04-01-2009, 05:25 PM
thanks so much for the kind words and encouragement.. actually, i'm pretty blown away by all the folks that responded to my cry for help.. with only a month under my belt, i'm still pretty emotional about the whole thing.. haven't quite come to grips with it or accepted the reality that this is my life now..
i'm a project manager for a construction project (oil facility) that will be built in oman next year.. we're doing the design work in houston this year.. but i feel sure that my company will not allow me to follow the job to the middle east now.. they won't want to take the risk that my health might go south and they would have to relocate me back to houston early.. so, i'm sort of in mourning for my career.. at some point, i'll have to tell them.. but right now, well.. i just can't talk about it.. except with my sister and close friends.. and of course, the folks on this site...
so since October 2007??? is it mainly your hands??? my hands feel like they are on fire most days.. swollen, red, stiff, sore...

mountaindreamer
04-01-2009, 06:44 PM
hi again mortified,

i just left you a message on the post about working full time...check it out, ok.

the hands....yes, my hands on fire, trobbing, and in terrible pain. this is what first started me looking for what was wrong. that was 1996 and i just got diagnosed in oct. 2008....it was a long search.

so sorry about facing career adjustments. maybe you will go into remission before having to go overseas. if not, as you have read on this forum, so many of us have had to make adjustments in several aspects of our lives....we do what we have to, we make the best of it, and we cherish the memories. but, we don't get beat, we bounce back with the help of each other.

you have every right to be emotional about all of this, allow yourself some good cries, or like rob, you can take the anger out on a punching bag....do whatever you have to...it is ok.

glad you are with us, you will find friends here.

Grime
04-03-2009, 10:22 AM
Oman is one of them muslin countries correct. You could dress like the women over there do, all covered up. You would be protected from the UV that way. Just something to think about.