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Thread: My dad doesn't get it (sorry it's long)

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    Default My dad doesn't get it (sorry it's long)

    So I guess I'm having a flare because I tapered off of the steroids and was okay for about a week and a half to two weeks and now I am back to feeling like my whole body aches and being tired all the time. The mornings are especially hard because my hands are so stiff and weak - I can barely hold my medicine bottles or open a water bottle I have only seen my rheumy three times which includes my initial visit, so only once since I've been on any medication. He isn't even the doctor that started me on steroids - it was my dermatologist because my discoid was not only on my face but also on my scalp and making my hair fall out. He started giving me steroid injections in my behind that would last about 3 weeks until the symptoms would start again (in addition to giving me injections of steroids into the discoid spots on my face so that they would heal. I then started a 40 MG a day prednisone prescription and tapered down to nothing.

    Anyway, since my flare started my dad keeps telling me I should just get up and go outside and go for a walk. That I should start a project or something because if he was in bed all day he would feel the same way I feel. He also questioned my medicines (plaquenil and mobic) - and said there is probably something all natural available over the counter that would work. I tried explaining to him what having a positive ANA/lupus means, and he can see the discoid on my face - so I am basically living with my parents again at 25 (after having not lived with them since I was 19 years old) and my dad thinks that I am sick because I am lazy. He does know that when I am on steroids I am fine - I went to San Diego and went kayaking all day and everything and I was great (thank heavens for steroids).

    I went to my PCP today because I thought maybe there was something he could talk with me about doing something natural and what he thought of taking steroids continuously. He said to talk to my rheumy about the continuous steroids because that he is not his specialty - but that there is definitely not anything natural that has the same effect on the body as plaquenil, mobic and prednisone. I broke down crying because I am basically living with someone who thinks that I am sick because I don't like to eat very much meat and sometimes I am in bed all day. All my PCP suggested was to take xanax when my dad talks to me like he does because it seems to be making me depressed. I have never taken xanax before but the talks with my dad are become more and more frequent, and I don't want to take xanax all the time.

    So basically I am hoping I can stay on steroids for a while (so that I can get out of bed) and hope my dad comes around, but there is still the other part of me that realizes I am 25 and I have gotten every job I have ever interviewed for so I could move out. I have a remarkable resume and college/internship + post graduate experience so I am not worried about getting a job, I am worried about committing to feeling well enough to work. I've only lived with them since August - I resigned from my analyst position with a global firm in August to focus on my health... but that isn't going to work if I am upset everyday. It's either the stress or the lack of steroids that through me into this flare. Any words of wisdom or comments much appreciated/welcome

    Love,

    Sarah
    Don't wait. The time will never be just right.

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    Hi Sarah,
    all I can say is hang in there. I have family members who never ask me how i'm feeling or hows my health because they don't think I have lupus and that I don't need medications. I am married and my husband is very supportive, so at least I have that but he too can be insensitive to how I'm feeling at times. Your dad's behavior is due to ignorance. Perhaps theres a support group for families with a lupus member that you father will be willing to attend with you or just try to educate him. I know it's hard but don't lose your confidence in who you are; even if it's your own family that may be bringing you down.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hi Sarah,

    When I was first diagnosed with SLE, my father gave me a pretty hard time too. I was 34 at the time, and although I never had to consider living under the same roof with my parents again, I was involved in a couple of business ventures with my father, so he had many opportunities to give me a hard time about things. I got the whole "you're just lazy" line of bulls**t too, which was ridiculous because I put in over 60 hours a week, and was the owner and CEO of the damn company. Dad was an investor and thus a board member, so he thought that gave him the right to harass me. He also gave me flak about the meds I was on.

    This went on for many months, and it added to my stress levels terribly, which added to my flares. My solution was one born of anger and desperation. I took my father aside one day at his house, and told him that if this behavior did not stop, that I would pay him off for his share of the company, bar him from the property, change my phone numbers, the locks on my doors, and remove him from my life completely. I looked him in the eye and told him he would never f-ing see me again, and I meant it.

    I love and respect my father very, very much, so this was one of the most difficult things I ever had to do in my life. After the confrontation, my father's attitude about my Lupus changed completely, it changed 100% for the better, and he has never been anything but supportive since. It turns out, my Dad was in total denial. My mother was diagnosed with Systemic Lupus in her early 50's, and had some terrible times before she got it under control. When Dad found out that his only son had Lupus too, he just could not handle it. He couldn't accept it, he felt powerless to help me, and his only response in his denial was to give me a hard time about the diagnosis, more and more until I finally snapped and gave him my ultimatum.

    I don't know if my story will help you, and I'm not suggesting that you handle things the way I did. I would never want to see anyone have to confront a parent they love the way I had to, but I will tell you to not be afraid to stand up for yourself. I just want you to know that you are not alone with this problem, and there are many of us here, who understand what you are going through.

    Hang in there. Things can get better.

    Rob
    Last edited by rob; 11-30-2011 at 11:22 PM.

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    hi sarah i got your message i know it can be hard people just do not seem to understand how it can affect your stamina , stress can be a major factor in making your lupus flare i am speaking from experience it does it to me all the time. being off the steroids does not help either. my daughter sarah is on plaquenil but she was on prednisone but rhuemi took her off them and she was feeling better on them except for bloating now she is sluggish again i think he will put her back on them. natural remedies i do not know my mother has gone off her medication and trying natural but she has become ill. it is really up to individual people what there treatment, alot of us are on gluten free diets it seems to help some of us but again this up to every individual. regardless of what your family members think you know your body and you know how you feel and what medications make you feel better. they just do not get it. do what is best for you. get your family to learn more about lupus and then maybe they may understand. try not to stress i know this is hard. i find listening to music or going to the pool relaxes me as well the pool is less strenuous exercise. know that we are hear when ever you need us and you can message me anytime take care hugs

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    sarah, many of us have had problems with family and friends.

    a couple of things that have helped me are:

    1. the spoon theory
    2. but you dont look sick
    3. a letter to normal people

    i also like to "understand", what is happenning to me.
    my wife and i ask lots of questions to my rhumi and pcp.

    my understanding of plaquinel is that it is a desease modifying drug.
    that is to say it has a chemical reaction with the lupus.
    it reacts at a cell level.

    there is no natural alternative.

    please read a few of the older threads. as i said others have been there, learn from what worked for us, and modify it to your needs.
    this type of stress, is the hardest to get over, and the worst for your flare.

    thinking of you as you journey through this.

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    Thank you all so so much for reading my entire post and responding so thoughtfully. It has been very helpful to know I have somewhere to come and relate with others about a lot of this stuff. Thank goodness my mom has been super wonderful through everything, and my parents are still married so I had vented to my mom about what had been going on and she confronted him about it for me. She basically asked if he had done any research at all about it, and he had not. She told him not to say anything unless he was educated on the matter.

    You all are so kind and uplifting to one another, I can't tell you how thankful I am to have found this site and be in touch with all of you. Y'all are in my thoughts everyday as I read through the posts. I can only hope I am able to help in the way you've helped me.

    Love,

    Sarah
    Don't wait. The time will never be just right.

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    I was 49 before being diagnosed with lupus and prior to that I went 25 years without ever calling in sick or missing a day .
    Prior to my own diagnosis I was not real tolerant of other peoples ailments. I certainly have a new outlook on things now.

    As a father myself I'm sure he feels frustrated that he can't help you and fix this problem or perhaps he is in denial and doesn't want to face how ill you are.
    Take care Niall

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Quote Originally Posted by n.mac View Post
    As a father myself I'm sure he feels frustrated that he can't help you and fix this problem or perhaps he is in denial and doesn't want to face how ill you are.
    Those two things were exactly what caused my father to react the way he did. I had never dealt with a parent acting that way towards me before, and I didn't understand it. As much as it angered me at the time, Dad and I both understood it, and understood each other after we had our confrontation all those years ago.

    The confrontation was so hard to do, but it lead to a new level of understanding and friendship between my Dad and I that has never faltered.

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