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Thread: going out of my mind... courtesy of a flare-up

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    Default going out of my mind... courtesy of a flare-up

    hey all, I'm totally new here, so I beg everyone's pardon if I'm not following protocol. I just need to talk to someone who gets what I'm dealing with. It has been nearly 8 years since I was diagnosed, and I've been on constant medication. Now it's mycophenolate, but I did my time on cytoxan, and the methotrextate was no picnic. I'm having my worst flare-up in years, despite my maintenance dose of cellcept, and it's getting harder to keep hoping I'll ever get a reprieve. There's no local support I can find, and my boyfriend and family, God bless them, just don't understand. It's hard to walk, it's hard to breathe, it's hard to do anything really. Except feel completely defeated. That is the one thing that comes easy right now. Ok, super downer... sorry. I just feel so alone. I guess that's why I'm here... Thanks for listening. Hope you're all doing well tonight.

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    Gee, Alirka, you don't look sick! How many times have you heard that? Yeah, we can all identify with what you are going through. Total fatigue, just plain wiped out is one of the biggest for me. And, then of course, like you, the joint pain. It never ends... If the disease isn't making you feel crappy, then the drugs to treat it are making g you feel crappy. But, once in a while, as you know after 8 years, life, disease, and drugs all get in sync and you feel good for a while. It sounds as if you are due your turn.

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    You have come to the right place! While I am only in year two of my diagnosis, I know the feeling. My family just doesn't get it. My husband has finally decided to read up on it so everything that I say feels weird is somehow related to the disease. I told him I had a wicked headache today with like lightning bolts of pain and he was all lecturing me about the disease but then, he doesn't get why I can't do everything I did when we met. It's aggravating!
    No one understands this illness like we do, the ones that are suffering from it. I come here when I need to vent and you won't find a better audience than here. Everyone has had something to vent about!
    Let it out! We are all here!!!
    Officially Diagnosed 07/31/2013

    My blog: http://nikkinicolealison.com

    "It's no use going back to yesterday because I was a different person then" - Alice in Wonderland

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    Hi alirka.

    So sorry you are feeling so badly. I was diagnosed in January 2010.

    Its a terrible affliction to have this illness. I feel so bad every day. My mornings are the worst. Lately my whole body aches in the morning. After a good hot shower I head in to work and seem to be able to ignore how I feel. If I stop work and sit down for a while it all comes flooding back to the point I feel I should be seeing a doctor so I force myself to get back to work. I get very irritable with everyone. I've got to be careful I don't step over the line. They (the people I have working for me) know I have this illness and are fairly forgiving. Sometime I think people must think I'm just a grouchy person.

    Yes, we with wegener's suffer quietly inside. People around us don't see our pain.

    I bought a new motorbike at Christmas. It's a sports bike and is so fast. When I go out riding on my own I feel great. Sometimes on a quiet long stretch of road I open it right up. Wow! It makes me feel alive. For a while I forget how bad I feel.

    You may find something in your life where you can escape to and forget for a moment how awful you feel. It's all we can do because it's not going to go away.

    My thoughts are for you.

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    Hi Stephanie,

    sounds like you're going through the wringer with our dumb disease. That's sad.

    A couple of questions for you:
    1. Do you see a doctor who specializes in Vasculitis/GPA/Wegener's? If not, you can find one near (hopefully) you by going to the Vasculitis Foundation's website. These docs will also consult with your local doc - often at no charge.
    2. Has your doc treated you with rituximab? This is a newer treatment that has helped a lot of us. It's given only via infusion (IV), and it's frightfully expensive unless you have insurance that will cover it. The insurance company will have to give pre-authorization for this drug. The two infusions I had in 2013 cost almost $20,000 each. Fortunately, my out-of-pocket cost was only $20 each.

    Most of the folks on here have had good results with minimal side effects.

    Good luck and better health!!
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    I'm glad that you found us, this group is very understanding and caring about all of us members. This disease is very frustrating and unpredictable. I'm sorry that you are going thru a flare and hope you can soon feel better. This forum has helped me thru a lot of issues both mental and physical since joining in 2010. I'm wishing you all the best for feeling better soon.
    Jana


    Do not fear anything, just do it afraid!
    It does not matter how slowly you go, as long as you do not stop!


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    thanks, all. I updated my post on the intros with some information, but I'll reiterate here, too. Yes, I'm being treated by a top rheumatologist at UC Davis. Rituxamab is our last resort for when the cellcept stops working. I think this flare-up just happened to me because we lowered my dose a little to far, and I had too much stress at the time. I'm taking a few weeks for myself, hanging out on the coast and relaxing in peace and quiet, with nobody to babysit, no documents due at work, no remodeling projects to work on at home. It's glorious Ok, I haven't quite gotten used to not doing anything but reading and sleeping, but you can bet I will

    Here's a laugh for you all, since I'm sure you understand -- This is how much my family doesn't get it: I posted on fb that I was finally going on my first real vacation in a decade (not counting my 6 month stint on bed rest), and I was looking forward to sleeping straight for a week. (I also mentioned that it sucked that it took a flare-up to schedule this medically-necessary time off, something my sister should understand upon reading). Instead she replied, "you know, you can sleep here" (implying that I should just take a weekend to fly down to southern CA for a "vacation" at her house...to rest...with my 8-month-old nephew...) sounds really relaxing, right? HAHAHA!
    Stephanie R
    Diagnosed 1/2007
    currently on the old-school treatment of cellcept and prednisone

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    Hi Stephanie and welcome to the forum.

    Oh gosh, resting with an 8 month old would be such fun

    I'm glad you found this forum. You will find all the support you need and hopefully a few laughs along the way.
    I sends big hugs to you from across the other side of the world and I hope that you knock this latest flare on it's butt, very quickly
    Keep Smiling
    Michelle


    Live your life in a way that you wouldn't be ashamed to sell the family parrot to the town gossip - WILL ROGERS

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    Quote Originally Posted by alirka View Post
    Here's a laugh for you all, since I'm sure you understand -- This is how much my family doesn't get it: I posted on fb that I was finally going on my first real vacation in a decade (not counting my 6 month stint on bed rest), and I was looking forward to sleeping straight for a week. (I also mentioned that it sucked that it took a flare-up to schedule this medically-necessary time off, something my sister should understand upon reading). Instead she replied, "you know, you can sleep here" (implying that I should just take a weekend to fly down to southern CA for a "vacation" at her house...to rest...with my 8-month-old nephew...) sounds really relaxing, right? HAHAHA!
    I can totally relate to sleeping straight for a week. I do it every year right after Christmas, whether I'm flaring or not. And you don't need the stresses of a social visit with family, you need some true down time. BTW, I have a sister near you at the moment, living in an old family cabin at Salmon Creek, just north of Bodega Bay. Nice beach there. And waking up every morning to the sound of the ocean sounds like heaven. Enjoy!
    Anne, dx'ed April 2011

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    Alirka sorry to hear your having such a bad time. I have had wegs about 9 years a and in a dandy flare myself not fun. The people here are so much help and don't mind someone venting as we all want to scream at times.

    My husband and I are retired. We are trying to do the things we planned/saved for and sometimes hard not to get down about messing up our plans all the time. I hope your getting away and some rest will help bring you back some. I have a husband of 49 years who doesn't really always understand wegs, but knows it isn't good the way I feel. Our kids have done a lot of reading about it, which is great. I don't know how you get your main people to read about wegs, but would help a little.

    Hope things get a little better soon.

    Mary

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