Hi everyone, I've been MIA

Discussion in 'Fibromyalgia Main Forum' started by Tigger57, Oct 8, 2005.

  1. Tigger57

    Tigger57 New Member

    Hi, I've been MIA for awhile. I've been having a real hard time of it. Still not working and the doctor now thinks I may have Lupus, but they don't know for sure what is going on. The latest I got was, "We know that you have a lot of inflammation in your body, but we don't know why." Three of my docs told me to file for SSDI. I can't. I can't live on it.

    I've started on prednisone, and it seems to be helping some. I'm still looking for a job that will cover the bills, but haven't found anything yet. I don't want to give up. I can't.

    I've been just living in fear lately because I may lose everything I have. I need a job and maybe that will lessen some stress and I'll feel better.

  2. ksp56

    ksp56 Member


    I am so excited to see your post! You have been missed!

    Hopefully, those doctors will figure out what is wrong with you for sure. It's that gray area which I find disconcerting.

    Praying you find a job that works for you!


  3. libra55

    libra55 New Member

    So good to hear from you. Wondered where you got to. I too have been gone a while. I was in the hospital for 5 days. I was dx'd with Crohn's Disease so like you I am now on prednisone. You might want to ask about Crohn's cause I remember you had the diarrhea problem like myself. I am thankful they found out what was wrong with me, finally.

    The game plan is to be on pred, my doctor has started me on a taper from 60 down to 40 mg. since my sed rate was so good at my last appointment. Later the gastroenterologist is putting me on an immunosuppressing drug.

    It is awful to have so much inflammation in the body, so painful. I hope you can get a solution. Ask about Crohn's. The gastro dr. told me I probably had it 5 to 10 years already. This last flare up did me in. I had sores all over body, mouth sores, watery diarrhea, and horrible joint pains, ran a fever for over a month.

    Wishing you well, and (((((((Hugs)))), so glad to see you back.

  4. deelite127

    deelite127 New Member

    Welcome back...so sorry you are going thru all this. I posted something a couple of days ago..maybe it can help you. It was titled "work from home opportunities for people that are disabled" It's not a scam..they don't want money. It is a non profit orginization willing to give people with disabilities when no one else will.

  5. Tigger57

    Tigger57 New Member

    O.k. you made me cry. It still doesn't take much but that will change as I start to feel better.

    I didn't realize how much I missed you guys until I read your posts.

    I had a colonoscopy in March and I thought that was how they found Chrone's disease... am I wrong?

    I don't really care anymore what they call it... I just want to be able to control it. I've given up looking for a cure, just control.

    I've also found that I'm not allowing anyone to tell me I have to apply for SSDI. I will fight it to the end... now that I'm feeling a little better. lol They almost had me, but I'm back and learning.

    One of the things I've learned is that I can do without a lot, but I cannot do without my "fur babies". I have to get a job and pay the bills for them. They've been there for me all the time... especially those horrible 2am feeling sorry for myself tantrums. They help calm me and keep my somewhat sane. I don't want to get too sane... then I'd be someone else.

    I'm so happy to be back. I love you all.
  6. Sandyz

    Sandyz New Member

    I`m glad to see your back. I`m sorry to hear your having such a hard time. I too have a lot of inflamation, my doctors don`t know where its coming from. I have wondered about myself having lupus possibly.

    This all gets so old doesn`t it? We just want to have a good simple life and our illness won`t let us. Its so hard. I have pets too and they are very calming and healing to be around. I have one dog and many cats, we live on a farm. I would like one more dog someday.

    Welcome back and remember we are here for you.
  7. libra55

    libra55 New Member

    Tigger, they did one on me (emergency) to confirm Crohn's but with all the other symptoms they kind of already knew I had it. You probably don't have it then, if they didn't find anything.

    The doctor told me with Crohn's patients they find these "cobblestone" like structures in the bowel, where there has been an ulceration and it healed, then ulcerated again, over time this forms scar tissue, so if they didn't find that then you probably don't have it.

    Lupus is scary too. I do hope you don't have that, but I know it is so frustrating not to have a diagnosis.

    Take care,
  8. Tigger57

    Tigger57 New Member

    My doctors and I have really started to believe it's stress related. Which is why I've done some pretty stupid things lately... self medicating, but I'm done with that. The problems are only worse with each day.

    I'm actually kind of glad this flare knocked me down the way it did... I needed a bottom spot to climb up from.

    Anyway, since I've started facing reality these past few days my diarrhea is back with full force, but I'll get that under control again too, along with everything else.

    I'm also starting to admit to the people who care about me that I was self medicating with my meds and alcohol and it's helping to say it too. I know it's stupid to do that, but when you've given up you don't care. I care now.

    So, guys, you've got me back and your stuck with me.
  9. Tigger57

    Tigger57 New Member

    Now I know what real support is.
  10. lovethesun

    lovethesun New Member

    I sure hope they find out if anything else is wrong.If you know what things are you can always fight it.It's so good ro here that spirit you have again-I'm glad that you've beaten back the hopelessness.Again,You were missed.Linda
  11. IntuneJune

    IntuneJune New Member

    Good for you, you are brave to make the admissions above. You are STRONG. Your colon will most likely appreciate the lack of alcohol and there are a lot of meds out there which will irritate it also.

    I now teach three wateraerobics classes at the Y in Peacedale. (and two in Warwick) I have not forgotten I made you an offer.....water is wonderful..... But at the Y, the way their classes are structured, I have little time before or afterwards for individual instruction. And for fibromites, a little one-on-one is recommended before trying a class. You were going to let me know when your IBS settles down......it seems like you are still struggling.

    Let me know......

  12. Mar19

    Mar19 New Member

    Oh, sweet girl!! My heart breaks for you. This is another of those times I wish I had that magic wand to wave and make you all better! It hurts me so to think of you being so miserable for so long.

    I'm glad to see you back, I really am. I've not been here regularly either b/c of my health -- but from the sounds of things, you're doing not nearly as well as I.

    I will keep you in my heart and in my prayers. Call me if you need to talk or anything, okay? I love ya!!

    Love and blessings
  13. Tigger57

    Tigger57 New Member

    Well, I'm not feeling as "perky" as I did last night, but I've been pushing myself to do stuff around here that I've just neglected. Heck, I haven't even been to the post office since Tuesday. I'm wondering though how I get so bogged down in paper.

    Well, doing some laundry and cleaning up junk piles and going to rest a little. I don't want to do too much and wear myself down again.

    I'm still doing o.k. though. With the major changes in temperature, I'm actually not doing bad.
  14. Bambi

    Bambi New Member

    have thought about it for a long time. Someone that likes pets and might take some rent off for doing chores. Just a thought. I think in the end many of us will have to Golden Girl it to survive and have a home that's kept up. If you decide it might be a good idea ads in Craigs list for your area are free. I do hope you start feeling better very soon and they figure out what is exactly going on! Hugs, Bambi
  15. Tigger57

    Tigger57 New Member

    Thanks for the advice, but my house is a very small (850sq.ft) and it's only one bedroom.

    I've I had the room, I probably would have done it.
  16. fivesue

    fivesue New Member

    So happy to see your name on a post. It has been a long time.

    Also, I'm sorry about all the problems right now; I will pray you find a job to cover the bills and one that you can do with you current limitations.

    Thank you for coming back and posting. Blessings for a great day.

  17. hopeful4

    hopeful4 New Member

    Glad you found your way back to us. So sorry that the road you're traveling is so tough. All of the auto-immune diseases you mention are something none of us wishes for anyone, esp. you.

    Living in fear sucks. I know, because like many of us here I've spent lots of time with that.

    Please take a deep breath, let it go, and take some time to consider the SSDI. If it turns out that, G-d forbid, you do have any of these illnesses, you may actually need the SSDI, and it takes such a long time to get it. I know, not possible to live on.

    Sending good thoughts and prayers your way.