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    Default Hello from the Great Smoky Mtn's

    Hello to my new family, My name is Becky, I'm 39 and was first diagnosed in 1996. I'm a mom of 2 boys 16 & 18 and the step mom of 2 girls 16 & 32, plus a (step) grandmother of a 3year old little boy. When I was first diagnosed I went on with life, very active and loving my job of taking care of others with disability. Never dreaming that my life would ever change, and I would become the one that needs help, then my flare ups came more and more and I had to quit my job due to the joint pain, fatigue, & sun-sensitivity. I'm on and off Prednisone. I took Plaquenil for about 2 years and it got to where it wasn't doing anything other than the great side effect of the bathroom runs. Now I've been on Methotrexate for the last 6 months but my dr. is talking about trying something else. I feel so bad for my family they have been so supportive to me and all I want is to support them back but with the bad days out numbering the good I find that just ain't happen any time soon.
    I've been out of work for 2 years this past May and waiting on our great federal goverment about my social security, (well it took me from May till Aug. with lots of tears and prayers before I would fill) to make up their minds. There just seems to be no end in sight, the bills keep pilling up and my husdand is doing the best any man can do. I JUST FEEL USELESS.
    The only saving grace is I know God loves me and is walking with me thru all of this. If I didn't have my faith I would have gave up long before now.

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    Hey Becky..

    Hello sister...

    First of all useless is a useless word, so throw it out. We are not tools to be used. Wife, Mum...children two 16, 18. 32 and a Grandmum.... I would say you are very much needed, love and cared about...and no doubt filled many years and still do with support, love for your husband and your children...

    So, I will pretend I never read the word useless.

    Still waiting on your benefits..unclear. If so, have you hired a Social Security lawyer...if not do. BY law they can only charge a set fee if you win...like our life is a game. But anyway the fee will come out of the retroactive benefit.

    If you have credit debt, pay one off at a time...call and ask for a lower rate interest.

    If you want some advice on debt I will be more than happy to suggest some things...ideas.

    I know how you feel, wanting to give up..but we don't, we know better. Just take life in small increments. If it has a solution fix it, if not move on and worry not over those things...

    Starting small will help you to feel in control again..one thing at a time....

    God indeed loves you, this I know too...

    Be well...
    Hugs,
    Oluwa

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    Hey Becky. I'm sorry you're feeling like I do too. It stinks to feel so "useless." I completely understand. I've always been a Supermom and Superhomemaker wannabe. The good thing is that we don't depend on me for financial stability. The bad thing is I just can't do much these days and I've got 4 kids- ages 10, 5, 4, and 7 months. Thank IPU(the invisible pink unicorn who is my favorite pretend God/dess and I'll invoke her name regularly) that my husband works from home of we'd be in really bad shape.

    I have always been so bad at accepting help from others. I hate to admit that I can't do everything I used to. I try, and then I pay for it.

    I hope you go into a remission soon and feel better.

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    Hi Becky,
    My name is Lauri, and I am new to this forum as well. I am 40 and jus trecently diagnosed, however, I have been really ill for several years. When I first got sick, I continued to work. then I was hospitalized a few times, and left work. Started to feel better, went back, flare-up then left again! I was denied disability twice, as I was yet no officially Dxd. My neurologist did write me a great letter (he had been my main doc for a couple of years), but we had a falling out and he refused to send the letter!! Nice, huh? Anyway, beginning last summer, I started to feel GREAT! I became a house inspector - was sooo excited!! Then, BAM it hit me like a ton of bricks in January of this year. On and off Prednisone, when I would taper off, the symptoms would come back. I was REALLY swollen and in unbelievable pain this flare. Finally, I saw a new doc in March, and she finally gave the official lupus Dx. My symptoms have never beeen the issue, but the neg. ANA. ALL my other blood work, though, has been off (sed rate and CRP really high, amemic, etc). Anyhow, be aggressive with the disability - thats YOUR MONEY!! I am going to have to apply again, as my hom is JUST coming out of foreclosure (my huband was laid off for a bit - back now thank GOD). I also have a very strong faith, and have to believe that God will not give me what I cannot handle. I have to put things in his hands - my pain, frustration, financial stress, etc). When I truly try to do that, I feel mch better emotionally. He walks with all of us..
    Good to read your post
    Lauri

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    Hi Becky;
    Your road traveled, with this disease, is much like the road that many of us have also traveled. We've learned that we can no longer do those things that we were once so easily able to do. However, what we've learned is that we can do different (and often, much more rewarding) things and/or in different ways. As Oluwa pointed out, this illness does not make us "useless", it just makes us "adaptable" and we find creative and innovative ways to accomplish those things that we want to accomplish and to do those things that we want to do.
    We are so much more than this disease. Many of us have discovered marvelous things about ourselves BECAUSE we have Lupus. So, I have to agree with Oluwa, you are not "useless", you are now a person who can adapt and change to any situation because, at your core, you are loved - you are valued - you are important!
    If, at any time, you start to doubt these things about yourself, or you start to become overwhelmed by this disease...come here to us and we will put you right :lol:
    Welcome to our family!

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hello Lauri;
    This is a special "hello" to you because it gives me an opportunity to type that name :lol:
    We are all too familiar with the Relapse/Remission syndrome of this disease. We have periods of time when we feel good and we are ever so hopeful that it will last. Then, as you described, IT hits us like a ton of bricks and we are, often, laid flat :cry:
    Many of us, also, have the same issues with Prednisone as you. I'm glad that you finally found a doctor who made the diagnosis and who is, hopefully, treating your symptoms. That can be a very important issue when trying to manage our lives with this disease.
    I'm glad that you joined us! Welcome

    Peace and Blessings
    Saysusie
    Look For The Good and Praise It!

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    Hello and thanks for all the in put,
    Oluwa,
    OK I'm not useless :? , how about if I say I'm sick and tired of being tired and sick so much and so often. As far as the social security goes, I was turned down once, hired a ss lawyer, got turned down again and now I've been waiting for a hearing. How long does it take to get a hearing and is there anything I can do to speed this part up, Ive heard of people waiting 5 years on a hearing.

    Jennyfoo,
    Yes thats been the hardest part of all this, going from supermom and supermamaw, to unable to do for them the way I always did. It helps alot just hearing from others that are going thru the same as I am. And yes accepting help has got to be the hardest part of all this for me as well.
    Thanks to all I feel so blessed to have found this site. It's help just knowing that I'm not the only one feeling like I do.

    Blessings to All

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    Hi everyone -
    Saysusie - thankyou for the special "hello". My name has ALWAYS been spelled that way, though, my official name is LauraLee. They told my Mom when i was born that "lauri" was a nickname and not a Catholic name, so she had to change it. BUT, she has never called me Laura!! lol Its good to read everyone's posts. I went to my doc on Tues eve and she was SOO nice and understanding (Thank you God). I was really upset (crying, etc) and telling her how I didnt want to see a new rheumie as I was really afraid they may come back and say, "youre bloodwork is fine - you're fine". She assured me that there is no longer any dispute that there is a seriouse autoimmune process going on. My sed rate and CRP are really high but...ANA still NEG! She said, "You may not have lupus, but you have SOMETHING! I'd really be more comforable with the rheumie Dxing you. But either way, I am going to put you back on Prednisone and start you on Plaquenil, until we figure out what it is. I am completely comfortable treating you for lupus, as your symptoms are so classic, and Im not going to let the ANA stop me from trying to relieve some of your symptoms." I was sooo happy. I dont care if they call what I have "Pain In the Butt Syndrome"...as long as Im getting treated for something. I really am the worst Ive ever been. So I started Prednisone on Tuesday, and notice a difference already - honest to goodness!! SOOOO happy!! I was able to walk to the community center near my house today for a womans meeting (2 blocks - last week needed a ride) without limping or swelling up, or having to take a nap! YEAH! It is really hot here in Boston, but Im doing shade mostly. In all the years Ive been sick, I have never been real sun-sensitve (a little here and there, but NOTHING like Ive read with some of you). As a matter of fact, my ability to be in the sun kept my neurologist from an MS diagnosis a few years ago. Anyway, the past couple of weeks have been UNBEARABLE. i would step outside for 10 minutes and have to go inside. I am really upset about this as working in my garden, pool, etc are HUGE sources of peace for me. i was almost symptom-free last summer, save a couple of swelling bouts and intermittent pain. I am PRAYING that the steroids make it OK for me to be in the sun even a little. Have any of you found that the steriods help with sunsensitivity? I am obviously fully willing to avoid the sun if it exacerbates my symptoms, but, I would like to enjoy it a little. Any advice from you veterans? Hope evryone is feeling well today. Stay steady!
    Lauri

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    PS - I also live on the beach....I loooove the outdoors!! Tell me I can be outside a little!! Pretty please????
    Stay steady,
    Lauri
    BTW - I thought I noticed a few weeks ago another woman posting from Quincy MA. (just south of Boston). Was I mistaken? Wouldnt that be somehting, huh? OK Take care all....

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    OK - Now Im just being obnoxious. It is later in the evening (a few hours after I posted) and it dawned on me that I didnt explain myself well. I do have sunsensitivity (butterfly rash gets much worse, eyes are really sensitive). I have had this from the begininning. But the bad exacerbations of symptoms is new (generally feeling sick, fatigue, headache, swelling) with exposure to the sun over the past few weeks. Basically just being outside is unbearable - this is definately new - but increase rash is not new.
    Im almost certain that these details dont make much of a difference to you all, but I just wanted to be clear - lol. OK, little obsessive with the steroids on board. lol. Going to go to try and sleep now.
    Good night all -
    Lauri
    For God has not given us a spirit of fear; but of power, love and a sound mind. 2 Timothy 1:7

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