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Thread: Frightened Texas newbie

  1. #11
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    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...
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  2. #12
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    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!!!!!!
    Money cannot buy you happiness but it can buy you a big enough boat to allow you to pull up along side it!!! - David Lee Roth

  3. #13
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    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..
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

  4. #14
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    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.

    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.


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

  5. #15
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    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.
    Phyllis

    share a smile today

  6. #16
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    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 !
    I'm Not Crazy, I'm Just A Little Lupie!

  7. #17
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    Saysusie is offline Super Moderator Super ModeratorEmperor of the Universe
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    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
    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
    Look For The Good and Praise It!

  8. #18
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    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!!!
    Money cannot buy you happiness but it can buy you a big enough boat to allow you to pull up along side it!!! - David Lee Roth

  9. #19
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    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...

  10. #20
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    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.
    Phyllis

    share a smile today

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