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Thread: Support network? what's that?

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    Default Support network? what's that?

    On 10/22/6 I was told by a doctor I had seen once that lupus showed in my blood work. When I notified my parents, my mother basically said that it's mainly a "woman's disease" and left the conversation. My father is the type who if he doesn't believe in it, it doesn't exist. So trying to talk to them about what is going on is an impossiblity as they only "talk at" me rather than listen.

    On 3/18/01, things started for me. I started having sharp bursts of pain from my thighs to my knees that would literally drop me to the ground in agony. Throughout the next 5 years I was discharged from 5 orthopaedic specialists, and 3 neurological being told the same thing "Nothing's wrong" as I was about to give up, I went to a doctor of internal medicine and he ordered blood work upon hearing what was happening. I do have a rash across my cheeks but not across the nose (also around my eyes and causing them to be puffy). He called and told me that it was present and that I'd have no trouble finding anything on it. He also had ordered more blood work, and after I read up on lupus I understood what that all was for. I tried to mention it to friends but they generally tell me to deal with what pain I'm in and therefore I don't see myself as actually having a network in place for dealing with this.

    Is there any way to get the pain this causes across to others?

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    Have you seen the spoon theory? http://www.butyoudontlooksick.com/the_spoon_theory/

    It's amazing... At least it has been for me...
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Default spoon theory

    Thanks, I read it and it makes quite a bit of sense to me. I printed it hoping that my family might read it and understand that what I deal with is similar to that. The pain has actually stopped me from doing quite a lot, as it got to the point where it was a struggle to even try to cross a street.

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    Hope it helps! so many people I know seem to get it after I show them that!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    I'm with solesinger the spoon theory was a life saver for me in explaining what it's like living with lupus, it was hard for my family too since lupus really isn't a well known illness.

    But along with teh spoon theory I would recommend getting some videos about lupus like from a library or sometims some pharmacies have them, and get some pamphlets and other reading materials.

    I did that and then sat down and had a family meeting and discussed things it helped.

    take care
    Stefanie
    SLE Lupus. Fibro, IBS, RA\

    Matt's Brown Eyed Girl!

    "I'm not broken, I'm antique; a little worn out but still beautiful if not more so because of it."

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    It turns out that my family seems as if they would prefer me to have a spinal injury than this. As they ignore what is printed in regards to Lupus as well as going as far as telling me that even though it showed in the blood work I should pretend that I don't have it (including saying I should lie at a job interview). My mother's favorite idea of late since I was told over the phone that I have it, is "If you think happy thoughts it will go away." and my father's is to ignore me as I'm now an embarassment to him. Can I trade my family for one that can actually understand?

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    Oh my god... I'm so sorry!!!!
    "All sounds are potentially dangerous.
    All sounds are potentially medicinal.
    All sounds are beautiful." ~Yoko Ono

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    Jerel;
    I know that your parents are sounding as if they are dismissing you and your diagnosis. I am not going to excuse their behavior, but let me say this from the standpoint of a parent who had to hear about a child's diagnosis with a chronic illness: As a parent, I DID NOT want my daughter to be sick, I DID NOT want her to have to live the rest of her life with an illness. So, my first defense (which was,in my mind, self preservation) was to lie to myself and pretend that she didn't have the disease. I know that, to her, I was not taking her symptoms seriously. Inside, I was. Inside, I was scared to death, Inside, I wanted to be sick for her. So, our minds do this to us..it is a coping mechanism. Although it seems totally inappropriate to you right now, I would bet money that if you could get inside of their heads, you will find fear and a strong urge to want to protect you from this. That urge is manifesting itself inappropriately right now..but they are trying to fight your diagnosis.
    Being diagnosed with a lifelong, chronic, possibly debilitating disease is a serious form of loss. To them, they have lost their dreams for your future and are grieving. As with any form of loss and grief, their first reaction is denial - Not accepting or even acknowledging the loss.
    The other steps in the grieving process are:
    2-Anger-"why me? Why my child?"
    3-Bargaining- Attempting to make deals with you about your health, or attempting to make deals with God to stop or change the loss of your health.
    4-Depression-overwhelming feelings of hopelessness, frustration, bitterness, self pity, mourning the loss of the hopes, dreams and plans for the future. Feeling lack of control, feeling numb. Perhaps feeling suicidal.
    5-Acceptance-there is a difference between resignation and acceptance. You (and they) have to accept the loss, not just try to bear it quietly. Finding the good that can come out of the pain, finding comfort and healing.
    Now, bear in mind that you, also, may find that you are going through these same steps. This is a major change both in your life and in the life of your parents. You will all have to, at some point, come to a mutual understanding about your illness. Keep trying to educate them, do not let them dismiss your symptoms or your diagnosis. Let your mother know that "Happy Thoughts" will not cure an incurable disease - only medication, lifestyle changes and knowledge will help you to manage this disease! Be understanding, but yet be firm and unrelenting!!
    I hope that I've helped you just a little bit. You cannot trade your family, so you must find a way to help them to help you!!
    Peace and Blessings
    Saysusie

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    Oh I do understand that I can't trade them, but there are serious days when I feel like it would be a good idea. The reason I'm annoyed by their reaction to this is actually quite simple. When I would go to family gatherings after being told I needed a cane I would simply hear " Leave that in the car, it's embarrassing to us!" So even though I do understand the stages of dealing with news, and though I'm trying to get them to understand what I'm now coping with, it is quite difficult for me.

    The idea that they lost their dreams for me I also can understand. I have been fighting pain for the last five years, and I understand what I've lost in the process. I keep fighting it due to not wanting to give up my freedom or mobility, and even now knowing that overexertion will hurt me I keep trying. In reality I'm too stubborn to give up, but yet their reaction of hoping that it will go away if I think "happy thoughts" does bring a lot of pain and anger (even if it's misguided).

    I'm trying to come to terms with what I was told, and what I've learned. I know it's going to be hard for me and my family. My friends actually accepted it quite easily, saying they'd be there when I need them. One has witnessed as my legs for no reason gave out and I collapsed. She has literally had to almost carry me to a chair or table so I could rest , on numerous occaisions now. Through the fact that she's been there since the beginning of this, from what I can tell, I know she won't give up on me nor let me do the same to myself. :P She and a few others, from witnessing the pain I suffer from those flares, know fully what to expect and how to help. My family has seen it occur, yet tells me that it's all in my head. Or of course there's the additional idea from my dad and what he was brought up with: "Any sign of emotion is a sign of weakness, and only the strong deserve to live." That idea has caused endless suffering in my own case, but also has given me something to at least fight. I hope one of these days maybe he'll understand what I go through, and give up on trying to get me to believe that idea.

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    Well, I was giving you a parent's perspective assuming that your parents really did want to help and really did care about YOUR health. But, I hate saying this, it sounds as if they are much more wrapped up in themselves and their image than they are in your health and your well being. For that, let me say that I am truly sorry!!
    I am happy that you, at least, have friends who are understanding and supportive. Is your medical team being supportive and treating you vigorously? If so, you might want to mention to them the additional stress that your parents are causing you with their denials and embarassment (it boggles my mind how a parent can be embarassed when their child is ill - I just cannot conceive of that kind of selfishness!). Perhaps you can ask one of your doctors to talk to your parents and to explain to them that every one of your symptoms is real and that this disease is real and IT IS NOT GOING TO GO AWAY...NO MATTER HOW MANY HAPPY THOUGHTS YOU HAVE!!!
    Your disease may go into remission, that happens frequently, but it never goes away entirely. Happy Thoughts will help YOU to COPE with the disease, they do nothing at all for the disease itself!!
    I can recommend several books and websites that also might help your parents understand. Let me know if you think it is even worth the effort and I will send you the list.
    In the meantime, I suggest that you ask your medical team to refer you to counseling and/or therapy so that you can get some help dealing with your parents. If you are unable to do anything to open their eyes, the least that you can do is anything and everything to help yourself!!
    Let me know if you want the list of books and websites.
    Peace and Blessings
    Saysusie

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