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Thread: New to group but not new to illness

  1. #1
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    Default New to group but not new to illness

    Hi, I am a 45 yr. old mother of 2 wonderful children daughter 19 and son 12 and a great husband of 25 yrs. and I have had lupus, sjogrens and severe cushings disease for 11 years. I have been on high dose steriods for 11 years and my body has paid the price I look in the mirror and I do not know the person who is looking back at me anymore. I lean in and stare into my own eyes looking for me :cry: I have gone from high dose chemo to the past 4 years I do IVIG therapy every 21 days. Still prednisone, plaquenil, lyrica, and host of other meds. I refuse to give up but find that in fighting this monster I can't fight just it and I feel like I am always on edge and just want to find a peace just stop fighting for a lil while. I have noticed over the past year that my strength is deteriorating rapidly and I can't even make it through the simple daily activities without having to rest. My family sees it I am sure but they now know me only this way but I just want them to see sometimes how weak I am and I do need help but I have always been a fighter but lately I feel such a desire to be helped and it confuses me and scares me so. If anyone else feels this way please let me know. Thank you for having this forum. God bless each of you.

  2. #2
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    Gentle hugs to ya ldbarnes and welcome to the site

    I'm not diagnosed as yet. I've had symptoms since in my late teens, I'm 48 yrs old now.

    My mother had lupus and my sister has been diagnosed since she was in her mid 20's.

    Things just started getting bad for me a little over two years ago. I've had possitive and negative ANA tests, malar and discaloind (spelling) as well as butterfly rash.

    I've battled with fatigue since I was a child as well as sun sensativity and now joint issues.

    Finally I have found a good combination of medications that work well for me. I'm on Arthrotec75 and plaquenil. I do not know how long these will keep working for me, but so far so good.

    Last year was horrific ... when I look back I do not know how I kept going. Every day was a struggle. I continued to work and tried to manage my home; not always successfully.

    Things have improved greatly for me and I pray they will for you as well.

    What medications are you taking?

    I'm sure the others will be along shortly to welcome you, and yes there are alot of folks here who can identify with you.
    Oh look ... a cookie

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    Hi,
    Welcome to the site. My name is Kathy. I have SLE Lupus and Sjogrens and a host of other Auto-immunes. I will be 50 on the 17th of this month and as you can see by my signature, I have have been battling Lupus for most of my life. I am battling a major flare right now too and it is hard to cope with at times. I think that this disease does destroy our looks big time and it stinks. My family is finally getting it and realizes that this is a very serious illness. I hear where you are coming from about being weak and wantting someone to take care of you. I fight this illness as hard as I can, because I flat out refuse to let it win or define who I am as a person. I hope that you keep posting and know that you are not alone. We all care for and about you.

    Hugs,
    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

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    Default hi

    Hello and welcome. I too am new to this group, but they are such lovely understanding people, you will feel better just by getting the knowledge and that you are not alone.

    Love Angelxx

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    Default Thank you !

    Thank each of you for your responses. I think we each try to battle this illness with great strength but we all have a day, a period of time we just need extra help and encouragement. Right now I am definitely in one of those times when my physical strength is low and my emotional strength is challenged. The holidays are exhausting :?

  6. #6
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi ldbarnes,

    I'm Rob. I'm 40, and was diagnosed with SLE in 04 and MS this year. Like you, I have always been a fighter, never throwing in the towel on anything. But there are days where pain is so intense, and the fatigue so opressive, that I finally say enough. I quit, I don't want to fight anymore. I am lucky, in that I do have a good, relatively pain free day a couple of times a week, and that's what allows me to recharge my batteries, and go on. I have had IV methylprednisone treatments twice this year, and although it was awful stuff, It did not tear me up too badly, and I'm thankful for that. The drug regimen you have been on is enough to knock down the strongest of people. Asking for help, is not a sign of weakness, nor is it giving in to the disease.

    I understand not wanting to ask for help. Wanting to be strong. But sometimes, we can't do it. I was physically fit, very active, and I'm 6'1" 220lbs, and I have to have my 72 year old father help me do my grocery shopping, and drive for me because my brain fog gets me lost. I should be helping my father, not him helping me. But, he assures me that he knows I need his assistance, and that this situation, this disease, is not my fault. I didn't ask for it. Asking for help can be very hard, but sometimes, we have to do it. Anyway, I wanted to welcome you to our group, and tell you that your are not alone.

    Rob

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