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Thread: How do you cope with it?

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    Default How do you cope with it?

    Hey, my name is Matt. I'm 24 years old. I'm gonna try to keep this thing from being too long LOL! When I was 15 I was diagnosed with juvenile RA. Then after years of taking anti-depressants, a new doctor found out that my symptoms were due to in part my thyroid. I began taking T3, cytomel, about a year ago. For a while I was feeling great. Then after this past summer I began getting these dark colored rashes under my arms and on my neck. My docotor convinced me it was a fungus. But the creams and meds didn't work. After complaining and crying and yelling I finally gave up. Until thank GOD the Nurse Practicioner I work for told me to get tested for Lupus. It was confirmed. I didn't know how to feel and honestly I still don't. I'm an outgoing person and the "lead blanket" as someone said on here is getting the best of me. Getting my work done is about all I can do. This morning I had to get out of the shower and sit on the toilet because I was just exhausted. And I just woke up. How do you cope? And is it normal for me to be so emotional about it right now? I think the biggest part of the emotion is knowing that I'm not just crazy, lazy , or not exercising enough. Is there anything that helps with the energy at all? I take B12 injections and that seems to help. It was part of getting rid of my anemia. And I have mood swings sometimes. Like I just get mad about the smallest things, my doc wants me on prozac or something for that. Is that part of the Lupus symptoms?
    Thank you

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    i wrote a very well worded reply.....
    but as sometimes happens.....
    it was disposed of by the big black box.
    so i will try again.

    many of us use depression medications.
    in my case i use 2 different types, not because i am depressed.
    but because lupus has effected me, and i need the stabalising effect of these medications.

    it may also help with your mood swings.

    the low energy and fatigue is common.
    as your medications help balance your lupus.....
    usually your overall health with improve.
    unfortunatelly it is unlikely that you will every be "normal"
    you will usually battle in some degree with fatigue and flares.
    most of us find a "new normal".
    with a few changes to our activities, we can still survive.
    there are some of us who no longer work.....
    but others that work 60+ hours a week.
    one of our members has had his health issues for quite a few years......
    but he is currently learning to drive a very powerful drag car.
    lots of things are possible.

    please read a few of our older posts.
    most of your questions canbe answered in them.
    or ask again if you need to.

    by the way.......
    there is quite a few of us males on this site.
    you are not alone in this.

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    Hello Matt, I am one of the males on this site and one of them that can no longer work:~{ Reading your post was almost like looking in a mirror to the past. I swear I have went through everything you describe and still do to this day. Steve has some good info there in his post. unfortunatly, just like the lupus doesn't affect everybody the same way, the same goes with the medication. I hope you have better luck than some of us have. Wow, rereading my post and boy do I sound like a downer, didn't meen it to be like that. anyway welcome to our place:~}
    Blessed be the God and Father of our Lord Jesus Christ, the Father of mercies and God of all comfort, who comforts us in all our tribulations, that we may be able to comfort those who are in any trouble, with the comfort wich we ourselves are comforted by God. 2 Corinthians 1:3

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    I can't really add must to what the wonderful me above me said so I am just going to welcome you to WHL. This is a wonderful place with fabulous who are always willing to help.

    Sorry you have to be here but we are glad you found us~
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Oh Matt do I ever hear you. I was officially diagnosed with issues when I was 22 (I am now 25), starting out with RA and possible Lupus, which the doctors guessed that I may have already had way back as a child. Last November the diagnoses of RA was dismissed and replaced with Lupus. I too was a pretty outgoing person, I had a job I liked for the most part, I rode horses, I spent a lot of time outside because its what I love, I was working my way up to a career working with animals and I had to give most of it up. I don't work now, I was approve for disability in 2010 and even though you are barely given any money, it is a relief that I no longer have to work full time to support myself. I too have mood swings, and I also have major depression disorder, which I was diagnosed with before I was diagnosed with lupus, because of my horrible childhood.
    Like Steve said what we need to do is look for a new normal that works for us, and make sure we don't overdo it. My counseling really helps me work things out.
    Lots of rest is good to get and I think taking Vit D can help with the fatigue too, and also help since most of us react to the sun and can't be out in it as much.
    You have every right to be angry, you will have stages you will go through, but taking anti depressants will be up to you.
    "With gentle hands and the heart of a fighter, I am a survivor!" - Reba McEntire

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    Welcome to our Family! The only extra thing I can add is go and have a read on the internet about " spoon theory". When I first read this I cried as I had found something that put me together and helped me to understand myself. Have a look and I hope this helps!
    Desley
    For every dark cloud there is a silver lining!
    Diagnosed: Lupus; mesenteric panniculitis; fat nacrosis;

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    You didn't sound like a downer at all! Its encouraging to see that there are others out there just like me. Family and friends for the most part don't understand the things I go through just to get the "little" things done. Thank God for my best friend and roommate who happens to be a Nurse Practicioner who understands Lupus completely!
    Again thanks for your words of encouragement!

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    Thanks for the quick replies! Like I posted before this one it is great to hear that I'm not the only one. Overall I know I'm just in that shock stage right now. Shock that I have it, shocked that I got an answer of what the problem is. Grateful that I got an answer! My doc told me the other day to limit my comings and goings as much as possible. That has seemed to help a little. But there is one thing that makes me forget it all. I'm a musician. I sing and play the guitar in a band with my brother and two best friends. We play several times per week. Its tough getting there. But when I start singing, the pain disappears. Its amazing. My own style of therapy I guess LOL!

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    Welcome to WHL, Matt.

    I think we all have gone through the grieving and acceptance phase. It's just part of having a chronic illness. As to being in a band-whatever "therapy" you can find the energy to engage in is great. To be able to forget Lupus--yee haw (with brain fog we tend to forget a lot, regrettably it's never about SLE).

    I play music, too. On my CD's, mostly . Rob likes his 8 track collection. Hehehe

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    Quote Originally Posted by BonusMom View Post
    Rob likes his 8 track collection. Hehehe
    ouch....
    but well said.

    lol

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