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Thread: Will you ever feel normal again?

  1. #1
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    Default Will you ever feel normal again?

    Hello! It has been 10 months today that I found out I had lupus. Nothing has ever been the same since. Do you ever get your enegry back? It seems like nothing has improved since I was first in the hospital (except for my platelets are normal again). Do you think it is the meds or the lupus that is causing me to feel tired, headaches and alot of other aches and pains. I have always tried to be very positive and say that is going to get better one day. But 10 months later I am getting discouraged! I can not work full time because I get such extreme fatigue and headaches. I also feel like I am not a very good mother to my 7 year old because there is so much that I am not able to do with him. Sorry for going on and on I am just getting so tired of not feeling well, I just want to feel half way normal again!!

    Thanks for taking the time to read this, I do not have anyone that understands what is going on with my health.

    Thanks, Deb

    current meds: plaquenil (400 mg), prednisone (7 mg), cellcept(1500mg),calcium, multi-vitamin, prilosec, amitriptylin, allegra D, ambien,tetracycline,

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    I dont know how to say it without sounding negative, but no. I havent felt like myself in over a year. It is really easy to get discouraged especially when you dont have a good support system (I dont have a good support system either) the upside is that you do learn to deal with it. I journal everything I do so I can always look back and try a determine if certain things are causing certain side effects. Be hopeful because even though it does not get better is does get easier if that makes any sense at all. I am new here but I am always willing to listen if you need an ear or just someone to talk to!!
    A good friend will help you move, a GREAT friend will help you move a body . . . Let me know if I need to bring a shovel!!!

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    It is more Lupus and some medications.
    Last edited by ssingh; 04-06-2009 at 05:07 PM.

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    Hey Tootles,

    I like to refer to the change as my "new normal"...whenever anything big happens in your life that wasn't there before it at first is considered abnormal, but when it decided to come and stay for a while it becomes the new normal...at least that is how I see it.

    That said...things have totally changed for me. Some for the better if you can believe it. The upside is if I have to be in pain, and ill then at least the monster has a name and I am believed... not considered lazy, or a hypochondriac. Downside, of course, I can't do everything I wish to do...sometimes, though I almost feel almost like myself...
    I have promises to keep and miles to go before I sleep, and miles to go before I sleep.......Robert Frost

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    Default You can do it!

    Lucky you! Haha! You take only 7mg of prednisolone. Im taking 60mg now and woah! feel disoriented like crazy. So headache and light-headed. Night time cannot sleep like ghost. Sighs.

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    hello my name is maria
    i been dignosed with lupus for about 9 yrs i have 4 kids i know what you are going though always tried just take one day at a time . your child will be ok. i use to take prednisolone i stop taking it becuase i felt like itwas to many of meds. i only take planquenil,water pill . eat health i use to have headache i top drinking caffeine and chocolate it worked for me . dont' worry justto spend time with your child plan game with in while you are resting in bed . sometime rent a movie . find way to have find everything will be ok
    maria
    Last edited by maguadalupe; 04-06-2009 at 10:20 PM.

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    Oh Deb, Im right there with you. it has been 17 months since my diagnosis. I am just now beginning to have some strength, energy and stamina. I can do dishes with out having to sit in between sink fulls, wash laundry if it is brought down. I sit on a chair to sort and transfer. I stick it all back in the basket and they bring it up. I dont shake rugs. Tried that and nearly fell of porch and ended up in the ER with a concussion. Yeh I think Im the only person who ever got a concussion shaking rugs. I fell backwards and hit my head on the concrete.
    I'd have to say that for me walking or the lack of being able to has been the hardest for me.
    I am using a walker now to get around. I have a cane also and on good days I can use it.
    Building up strength, energy and stamina is my job now. That and working at not over doing it so I flare again. Oh I almost forgot my most important job of each day is to connect with each of my six kiddoes during the evening.

    Keep yer chin up Deb.
    Kasey
    Kasey
    aka SuperNoodle

    I am a Lupie Lethologica Goofy Groupie

    I can do all things through Christ who strengthens me. Phil. 4:13

    Wife to my HubbyMan and Mom to a Multitude! Lovin' my sweet pup Ellie!
    Come visit our new store, www.hayleystreasures.com

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    Hi Tootles...

    First...You are a good mother. A mothers love is not based on what you can or can not do. The bond is tighter than that...create things you two can do together..it is all about the time shared. Playing board games, cards...movies, baking cookies, drawing...start a small aquarium...swimming, which by the way is good for the Lupus body...

    I don't have children but I was one myself...smile...

    We usually have to redefine our normal. My 'norm' is tired, fatigue, constant yawn, pain in my joints and muscles. Not all muscles, not all joints at the same time. Today, hip, shoulder and ankle joints...muscle group....upper back, thighs and forearms...

    Could be your medication too..

    I evaluated yours...
    Amitriptyline ....headaches, drowsiness, weakness or tiredness

    Tetracyline.....Headaches....

    Ambien...drugged feeling, back pain, chest pain, lethargy, drowsiness...

    Prednisone....Muscle weakness

    Cellcept...malaise, neck pain, arthraglia (joint pain).. myalgia (muscle pain..)....

    Have you been evaluated for Fibromyalgia Syndrome?

    Have you read the Sticky on Home Care....are you eating properly, exercise....stretching helps oxygenate the body...

    Ask your doctor about Deplin...since you are on Amitriptyline it may help boost the effects of it..creating more energy. I am on it alone.

    Ask your doctor about CoQ10 supplement, that may work for you...supposedly recharges cell...may improve symptoms of chronic fatigue. I was on it, for me I didn't notice a difference but it may for you.

    Also ask about a Super B Complex for energy and stress....I supplement with that and also with Fish Oils daily...


    Please don't be hard on yourself...saying negative things about you to yourself. Lupus is hard enough on us...so we don't need to be too..

    Head hugs..
    Loves,
    Oluwa
    I have Lupus. So *^#@! what.

  9. #9
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    Hi Deb,

    First, I agree with Oluwa completely. We deal with so much negativity all the time that it's important to be gentle with ourselves and take the time to notice all of the things we CAN do, instead of focusing on all that we've lost. Of course, that said, I sure fall into my pity parties every so often...but I'm sure you're a great mom. It doesn't matter what activities you are able to do - it's the time you spend together, creating memories. And sometimes that's just popping a bunch of popcorn and watching a great movie together under a tent of blankets. I'm not a mom, but I am an elementary school teacher, and one of the things my students say all the time is that they wish their parents would just take the time to talk to them, listen to them, and just be with them. Not giving them half their attention while on the phone or computer...just time when they feel important and loved.

    About normal...I was diagnosed with lupus (SLE), Rheumatioid Arthritis, Sjogren's Syndrome, Reynaud's Syndrome, and Celiac 2.5 years ago, and my life is not the same as it was before. My normal today is not what most people would consider 'normal'. But there are days I can cook a whole meal, not just reheat leftovers. Some days I can do the grocery shopping and stop at another store, and not totally collapse the second I walk in the house. I learned to deal with the daily pain, and do what I can with my limitations. For me, normal means feeling like I have the flu all the time. But there are good days, in spite of it all. That's what I try to hold on to, what keeps me going. We understand exactly what you're going through, because all of us are too. Lots of hugs to you, Deb.

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    Hi TOOTLES! Sadly to say that "no" you will never feel like you did. I havent in 3 yrs now. Im still adjusting to changes. Its going to be an adjustment for you unfortunately. Its hard but it is what it is. I do what i can to help myself and what i cant control i work with it to make it less explosive. Sorry you have to go through this but having people who are also going through it makes a BIG difference. These are GREAT people on this site, i cant say it enough.
    We Live in a MORTAL, FRAIL, IMPERFECT world in which the word "FAIR" doesn't always apply.Make EVERY MOMENT COUNT with the ones you LOVE because it can end in the blink of an eye. Love, Jeannette

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