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Thread: Allow me to introduce myself

  1. #11
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    Like you I am new to this site. Among all the issues, my family thinks I am just malingering and lazy. The fatigue is severe and the pain unbearable. Are there any groups for family members to attend to be educated about this disease? I am in Raleigh, NC

  2. #12
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    Janice,

    I'm sorry with how you family are thinking but with Lupus suffers because a majority of us look well on the outside we're classed as

    "FIT AND HEALTHY" by other's and there's been so many threads and discussions on the site about this, nobody knows only those who suffer.

    We all suffer with fatigue and the pain besides foggyness of the brain which drives alot of us mad, so don't take in what your family say, tell them to read about it first before accusing.

  3. #13
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    Hello all,

    Thank you for the warm welcome.

    I recently returned from out of the country which is why I've been MIA since I started the thread. Unfortunately I'm still flaring up but I'm doing better. My energy is coming back lilttle by little. I cut my hair again because it started falling and thinning out. The rash on my face is fading as well. I've also been having issues with my hemoglobin levels. To help this issue my hematologist put me on this shot called Aranesp. I had my first injection about 3 weeks ago before I left for vacation. I know this is suppose to help me and it's something I need but for some reason it scares the hell out of me. The day I went i broke down in the office. I mean the water works were flowing. It was so overwhelming. I go back again on Wednesday for another shot. The doctor said I have to continue the shot until my levels improve. He said I'm at an 8 and he wants me at a 12.

    That's pretty much the major stuff I think. I've gotten so use to the little everyday things that I really don't pay it any mind. I'm quite sure everyone knows where I'm
    coming from.

    I will keep you all posted. Thanks again for welcome. 
    Dx: SLE December 20, 2007
    Meds: Plaquenil, Imuran, Predisone

  4. #14
    Join Date
    Jun 2010
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    I am so glad you came back to us. Tell us about your vacation?
    Diagnosed with Lupus - 22 June, 2010

  5. #15
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    My vacation was enjoyable and much needed.

    The first half of my vacation I spent in Jacksonville, Florida. I went out there for a family reunion. It was only a weekend thing but I stayed out there for week. It was pretty cool getting to see the family. There was a meet and greet on Friday, the main event BBQ on Saturday and a brunch on Sunday. On Sunday I went to the Jacksonville Zoo with my partner, parents, niece and nephew plus a couple of cousins. There zoo was great and the kids as well as the adults loved it. They had a train to ride around on, a merry go round and even a pool play area for the kids. We were in the zoo for like 5 hours. Needless to say you guys know I was worn out, lol. After a couple hours rest we all met back up for dinner @ Red Lobster since it was the last night everyone was going to be together. With the official activities over my cousin Cynthia who is native to Jacksonville kept us occupied for the rest of time there. We did some shopping, hung out at a bar, hung out at her house with her hubby and son, and even a little beach time.

    For the latter half of my vaca I was in Cancun, Mexico. My partner as well as some friends convinced me that I needed to have some much needed party time. Cancun was great. Granted I had to pile on the sunblock, have on the sun hat and the shades I loved it. I actually kept up with them pretty good too. I only had one night when I stayed behind while they went to dinner because my body told me no. We went to Wet N Wild water park, checked out some clubs, the beach was right outside our condo and of course restaurants. Senor Frogs and Carlos and Charlies were our favorites while we were there. If any one goes to Cancun try them the staff makes the experience so fun.

    That pretty much sums it all up. I'm feeling a little fatigue from the excitement of it all since I've been back but its not bad. I thought I would be out for the count for a day or two when I got back. I get recuperate since my next big adventure isn't until August when I go on a cruise with the family.
    Dx: SLE December 20, 2007
    Meds: Plaquenil, Imuran, Predisone

  6. #16
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    Hi Tunda,

    Like Linda thanks for coming back and letting we know how your keeping and a good vacation and break does you good sometimes, so i am pleased for you in that way and i do hope you get your hemoglobin levels back to a steady 12.

    ((Hugs Terri)) xxx

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