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Thread: My Hands are a mess again

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    Default My Hands are a mess again

    Went to my rheumy yesterday about my ulcers. She's really worried about them and freaking me out with all the stuff she was talking about. I wont know more about what were doing about it until Friday. My ulcers are really bad this time. Im also doing something called a 6 min test. Im just really frustrated that all these things I've been saying to my doctor she is just now listening to because she thinks the tip of my finger is dead or close to it. I have had the worst headache after everything and no one at home understands I just needed to get on here.

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    Oh Ritzbit I am so sorry! The stress from all of these things can just be so overwhelming! On top of that the limbo you are having to wait in while you wait until Friday makes things even worse. Isn't it just crazy how we talk to the Doctors and talk to them and they don't listen until it smacks them across the face. We will be here for you while you wait and get your answers. Come any time and vent, you know that is what we are here for. Try not to worry because it will only make you feel worse (I know that is easier said then done).

    This family understands completely and we will do whatever we can to help you through
    Mari

    Success is not final, failure is not fatal: it is the courage to continue that counts.

    ~Winston Churchill~







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    Im just so frustrated. I told her TWO MONTHS AGO how sick this medicine made me feel. It made me feel like I was going to throw up everytime I took it. I told her that at my last appointment and asked if there was anything else I can take to replace it. But she acted like I was stupid for saying that because she'd never heard anyone say that about the medicine. So I stopped taking it on my own. And before that, I had stopped taking all my medicine for a few weeks because every time I saw them I would want to throw up. It turned into a complete mental thing and I just couldnt get myself to take them. I really did try but I'd spit them back out. So I just started taking them all (except the one) a few weeks ago and thought I was doing good. But right after that my ulcers started. And so its entirely my fault apparently that my ulcers came back with a vengence. I know it is partly my fault for not taking my medicine, but I asked her for help. Then when my mom told her about me not taking my medicine for awhile and I told her why she said I should have asked her sooner for another medicine. I felt like screaming, are you stupid?!?!?! I didnt say anything though because it wouldnt have been anything nice. So now she's saying things about going into the hospital for IV meds for it before it gets so bad it'd need to be taken off.... =( I feel like if she would have listened two months ago this could have been avoided.

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    It's unfortunate that so many times we scream to be heard and listened to and aren't until we are damned near exhausted from the effort. I'm glad you advocated for yourself. I'm sorry your doctor and family wasn't really listening to you, but good for you for sticking up. I hope the finger tip isn't dead and the iv helps. I hate to say it, but I also hope this helps your doctors and family to learn to listen to you since you know your body best.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    hi there ritz,

    so sorry to hear about the horrible ulcers and your fingers. I know exactly what you mean about taking your meds. I have (on several occassions), stood there with meds in hand, and just could not make myself put them into my mouth. I have never gone more than a few days, but it does happen. Don't beat up on yourself, sounds like your dr. is trying to do that herself. She would have to be walking in your shoes to know exactly what you are going through. Stand strong, and come here when you need to let off some steam....we are here for you, and we all believe in you.
    Phyllis

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    Thanks guys. Im just so sick of attempting to explain things to people lately who are not listening at all. I've tried SO MANY times to my family whats been up, and after I have, they just say the same things because they take none of what I said in. I've been arguing with my mom like crazy lately because we're fine until I become "lazy". Because after hearing all that the other day I was completely exhausted and went to sleep early and she woke me up to do the dishes instead of just doing them herself for a change. Its just been fights about the most stupid things and I just have such a bad headache over all of it and she doesnt even seem to care.

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    have you ever suggested that your mom read this page? I think she would have a lot of insight into exactly what is a lupus thing and what is a teenage thing. that might help you two to communicate better.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    My mom has barely read up anything on lupus at all I dont think I could get her to look at this website. She just assumes that I dont take care of myself and am just lazy about everything, when really its exhaustion and not remembering things. I feel like she's so hypocritical about everything and I dont want to be mad at her all the time but I really am anymore. She keeps telling me how I'm lazy and most people my age actually have a "real" job, though she it TRYING to get fired? I feel like the most adult person in my house, but Im also the most run down so I cant get much done. I feel like I really help out a lot and no one appreciated what I am doing, so when they act like I do nothing I just get really frustrated.

    And on another note I have to talk with some like medication adherence person or something because she doesn't believe me when I tell her I am on all my meds except the one medicince. And she's finally listening to me after almost 2 years about how I have trouble breathing when Im up and about doing things. So Im finally doing something called a 6 min walk test because the other tests haven't shown anything. I will know when everything is happening hopefully by the end of the week and I'll know if I have to go back on my Cellcept =(

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    I'm going to keep my fingers crossed for you that you don't.

    I remember when I was your age I often felt like the parent in the relationship with my mother. That was even before I was sick. I can remember how frustrating that is. I wish just saying it'll probably get better in a year or two when you are out of the house is enough, but I know it's not. (((HUGS))) I hope you find a way to get your mom to listen to and hear you soon.
    As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.



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    Hi Ritz,
    We all know what it is like to have docs tell us that we just can't be feeling the symptoms that we know we are feeling. If we don't fit into the little box that is the symptoms that they know and are interested in, they want to dismiss us. You would think that they of all people would be interested in researching and learning more about our conditions!
    I wish that your mom would come talk to us. When my two youngest girls were dx'd with asthma, I researched it and learned as much as I could about it. Encourage her to communicate with us. It might help.
    I hope that you finally get some good care. Keep us informed.
    Hugs,
    Marla

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