Sunday, May 1, 2011

Insensitive People are Very Hurtful

Last night I was up nearly all night in pain and feeling in general like crap physically, but the good news was that I was feeling happy for the first time in weeks because of rescuing those dogs.  Altruism gives me a natural high.  I feel really good psychologically when ever I feel that I have done something to make a positive difference in the world.  After weeks of a fairly debilitating depression, adopting those dogs with my parents was a huge pick me up.  But when it was time to go to sleep last night my throbbing kidneys and joints and head would not allow much more than a few cat naps here and there.  So when it was time to get up and get ready for church I was feeling awful.  I had an incredible migraine causing overwhelming nausea and for some reason even though my bladder felt ready to burst, I was unable to urinate.  This has happened to me before and I have been told that urine blockage is yet another trick in Lupus' bag, especially when you are having kidney involvement like I am.  It was sooo painful and I felt such an urge to go and nothing was happening!  I called my mom and told her I was in no shape to make it to church and asked her if she would let Katie (my 10 yr old daughter) ride to church with her so I could stay home and try to get rested and well enough to be able to teach my youth group tonight.  I spent the whole day resting and suffering with this awful migraine and waves of nausea sweeping over me. By the late afternoon it was obvious that I was not in any condition to go up to the church and run my youth group, so I called my sister because she teaches the younger class.  I asked her if she could just do a game night or a movie night with the kids at church because I was too sick to go teach my group.  She texts me back that Kaleb (my 2 yr old nephew) has a 105 degree fever and she is going to have to take him to the doctor so she isn't going to church either.  I knew better than to ask my mom for help because she had been working on homework for her doctorate classes and I'm sure she would have felt overwhelmed if I asked her.  So I called Mary, my co-commander for our AWANA group at church and explain the situation.  I told her our kids wouldn't be coming but she could maybe do a game or movie night for the other kids and she said she would.  Then I felt bad because I didn't want our kids to miss out on their Bible lesson for tonight so I texted Emi (my little sister) and told her she could send Montana and Maverik (my niece, 12 and nephew, 10) over to watch the movie The Prince of Egypt at my house so at least they can learn about Moses during what would have been AWANA time at church.  She sends the kids down and they come in and tell me that their mom sent them over to watch a Bible movie because I was too "sick" (she used air-quotes while rolling her eyes) to go to church.  Then Katie got offended because Emi was acting like she thought I was faking, so she told Emi that I really was sick and that this morning I was in a lot of pain because I was on the toilet trying to pee and it wouldn't come out. To which Emi responded, "Oh I feel so sympathetic for her," in a really sarcastic tone while rolling her eyes and throwing up air-quotes on the word "Sympathetic."  I am so tired of her attitude that my lupus is not real and that I am not really sick.  If I wasn't sick then why am I running to doctor appointments 2 and 3 times a week and having all kinds of tests coming back abnormal?  How is it even logical for her to think that I can fake these blood tests, urinalysis, x-rays, CT scans, ultrasounds, biopsies?  SHIT!  What would it take for her to stop treating me like some kind of liar in front of MY child and MY niece and nephews who adore me?  Why does she try to make me look bad in their eyes?  Is she so insecure that they love me that she has to try and create doubt in their minds about whether I am genuine or not?  I am so sick of her hurtful behavior and as much as I love her, she is making me not want to be around her.  If she wasn't my sister, I don't think I would choose her as a friend.  She doesn't even care about how sick I am or what I'm going through.  She doesn't even ask about my doctor appointments or anything.  The only time she calls me is when she wants me to take care of her kids or pick them up from someplace or take them someplace.  I have friends who call and check on me regularly, send me cards to cheer me up, total strangers I met on Twitter who offer support DAILY and I've never even met them face-to-face.  I think it is pretty sad that I can rely on strangers more than my own flesh and blood.  My mom and my sister should be my best friends, but their attitudes towards my illness have created a giant rift.  Every time they aren't there for me when I need to talk because I'm scared about the things lupus is doing to my body I feel so hurt and rejected.  Every time they make snide remarks about me not being able to work or having to spend a lot of time resting, it really hurts my feelings very deeply.  It makes me feel ganged up against, devalued, uncared for, not good enough, and most of all unwanted.  Since my life doesn't measure up to what they think it should be, they completely discount me.  What they don't realize is that I already feel disappointed in myself.  I feel like having lupus I have let down everyone in my life because now I can never be what I need to be to everyone.  I don't need them shoving it in my face constantly that I'm not as good as they are, and that I'll never be good enough no matter what I ever try to do.  My family has always been my whole life and now I find myself avoiding them more and more because I am so tired if being hurt by them.  My mom wraps her whole life around my sister and I can never have any time alone with my mom.  And if by chance I do get a moment alone with my mom she acts all distracted like her mind is elsewhere and I can tell she isn't even listening to what I say.  I feel so hurt and betrayed and rejected by the very people I should be able to count on the most.  When the three of us are together I can't even talk because they dominate the entire conversation and if I try to talk about myself I get cut off immediately because they don't want to hear it.  I live next door to my mom and dad and if it weren't for my daughter coming home from school everyday, I could die in this house and no one would even notice I was gone.  That's how important I am to my family.  My husband, daughter, and even my ex-husband treat me with more care and concern than my mom and sister.  This lupus shit is scary for me and I should be able to talk to my family about it, but that might take the spotlight off of them for a minute and we certainly can't have that happen. I'm pissed off that every time I'm sick my daughter gets smart ass remarks made to her against her own mother.  I'm pissed off that every time I call my mom she doesn't even answer her phone most of the time and if she does she is ignoring me to talk to whomever is in the room with her and when I catch her with a question and she stays silent I know I might as well have been talking to my dog.  But if I am over visiting my mom and Emi calls, she totally ignores me to talk to Emi until I finally give up and leave. SO I guess from now on I just am going to stop calling them and stop trying to share with them what is going on with me medically because clearly they don't give a shit and I am so sick of having my heart broken over and over waiting for them to think I'm valuable enough to give a damn about.  I'll just stop going over to visit and stop asking my mom to go shopping with me because she tells me no and then I find out she went with my sister instead on the same day!  I have totally isolated myself and they don't even check on me or seem to notice.  And people wonder why I'm so depressed.  I don't even want to live here anymore.  I wish I could sell this house and move far away because the only time they take an interest in me is when they want to criticize me or control me.  Maybe if I were out of sight and out of mind they'd forget I ever existed--I really already feel that way now.  When I die I want to be cremated and I want the inscription on my urn to say, "TOLD YOU I WAS SICK!"


  1. My sweet sister from another mister! I can't express to you how my heart clenched each time I read about the snide remarks, and the quoted fingers. It's all too familiar to me. I went through a similar experience with my biological came to a point where his disbelief of my illness & crude remarks stressed me so much that my hair began falling out more excessively & I became more ill.

    It comes to a point when we have to choose to love ourselves, and remove the "stress causers" from our lives. It isn't right for anyone to disregard your illness or behave crudely to your daughter about it!

    I suspect that they are in denial about you being ill. It is a tough road to travel living with a chronic illness but it is one you do not travel alone.

    If you haven't take a peek at my "love letter to myself" post. I want to see you take that writing challenge. It may be difficult but sometimes we have to let go of those who hurt us & hold fast to those that love us, whether they be blood or not!

    I love you Annie, and always will! And never will I ever let you give up the fight against lupus! We are standing strong together & I am rooting for you to kick lupus arse daily! So flip em the bird & make YOU priority! *hugs & kisses* <3

  2. Tiffany, thank you so much for your support and sharing your story about your experience with unsupportive family. Stress is the enemy of lupus and when my sister acts nasty and hateful about me being sick it really does stress me out and make me more depressed and my hair falls out too. Once she had me so stressed I had some quarter sized patches of bald! I already have a ton of guilt issues when I can't keep my commitments at church when I'm ill so her reaction to the children, who look up to me, as if she is trying to tell them I'm not really sick I'm just shirking my duties really hurt me. I just don't even know what else to do but just avoid her, which is hard because I am very close to her children and in spite of everything I really love her, even though I HATE the way she treats me and tries to make people think I am not really sick, just a big hypochondriac. Tell me where to find your Love letter to yourself and I would love to read it. You are so inspiring! Love you girl!