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Thread: Frightened Texas newbie

  1. #1
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    Default Frightened Texas newbie

    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.

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    Smile New member too...

    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...

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    Default HI

    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.
    I am still here,just been on new meds so unable to function like i used to.I will pop back,just know im thinking of you all and hoping you are keeping on keeping on.xxxxxxx

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    Default

    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.
    Phyllis

    share a smile today

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    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

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    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

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    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
    I have Lupus. So *^#@! what.

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    Quote Originally Posted by mortifiedat52 View Post
    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.
    God Bless you always,

    Maria

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    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!
    Last edited by BonusMom; 03-31-2009 at 09:26 AM.

  10. #10
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    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.


    Sitting on the beach drinking lemonade.
    Fair wind and following seas.
    David

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