Wednesday, November 7, 2012

Chronic Illness to Chronic Complainer?

I purposefully went to bed at 9:30 and did not watch any political result coverage. I knew who was going to be elected. It killed me to know who was going to win, so why watch coverage of it? Tossed and turned all night, stayed off facebook to see the gloating, stayed away from my computer, the TV, stayed safely in my cocoon of comfort. I wake up at 4 something in the morning, made a GIANT mistake.....I looked at facebook. Yep, gloating all over the place. Gloating, gloating, gloating. It made me sick to my stomach that they were celebrating my lack of health care these next 4 years and beyond (let's face it no Republican will be in office for a long long time because underachievers want achievers to be at their low level). As I saw it, my friends were celebrating my slow and painful demise all in the name of marriage equality and Obamabucks. I want marriage equality too but I would choose health, in particular all of our health, our chronic illness we fight everyday. I'm sorely disappointed by my country, my friends, and my fiance. He thinks I overreact and that I am thinking worst case scenario. He never has a retort to the fact I read the 1000 plus page ACA. I know what and the rest of us are in for.

So saddened, disgusted, enraged, disappointed, disenchanted, and getting to become numb. I deactivated my facebook. I don't know if I will ever return. It won't be for a long time, I can tell you that now. I'm tired of being assaulted by lies and bullshit.

Now on to chronic illness to chronic complaining (above was not complaining, just venting. I want to make that distinction now).

I had an important doctor's appointment at Duke Rheumatology yesterday afternoon. The main point of the visit was to go over what I already knew. That I 99.9% had Juvenile Rheumatoid Arthritis as a kid (hello swollen knees and awful pain legs my whole childhood...along with popping joints and just overall never functioned as a limber kid) and that I am a sero negative RA patient because JRA does not show Rheumatoid Factor in adult versions. Rupus (RA and Lupus) was confirmed. Then that nasty subject of amyloidosis was brought up again. My Duke Rheumy strongly suspects I have a secondary form of it. So, I did a blood test and if that comes back positive along with me and my awesome 24 hour piss jug test, I have to see a neurologist and get a fat pad in my stomach biopsied. I have a nuclear stress test later today and she hopes that protein deposits would be shown on the scans, if so, she has her answer to amyloidosis sooner than the blood tests come back.

My mother goes with me to my appointments. I never ask her to come, she just comes, then when she goes and hears all of these various hardships I endure then she gets all mad and pissy. So I had to deal with a pissy mommy on the way home from the appointment and she obviously zoned out and did not retain anything the doctor had said. So there was the 1st person that zoned me out on my doctor's appointment.

Then my Dad called wanting to know how my appointment went. I was in the middle of saying what happened and what was said and he was rushing me off the phone and had to go. 2nd person that was not paying full attention TO A FREAKING QUESTION THEY ASKED!

Then the third and final straw? WW asks me how it went, I'm in the middle of explaining my day and the outcomes and I noticed I didn't have his full attention either. He was looking off and futzing with something on his computer. Then it dawned on me, no one no longer wants to hear about my damn health woes. I think I am literally boring people to death by my piss poor medical shit, or it is just too negative news for them to absorb, or I am now a chronic complainer? I'm at a loss for why 3 separate cherished loved ones just quite bluntly dissed me. Hey, guess what folks? Don't fucking ask me how my appointment went if you are not fully interested. I'll just absorb it like I usually do, ON MY OWN.

Do people want to hear, "my appointment was great!", "my appointment was the usual", or "it was fine" as a response? If that's the case, I can say those generic replies.

Then my aunt texted me asking me to keep her updated about the election. I told her I had a shitty day full of shitty info and that I was going to bed. She asked what was wrong, I tell her. She texts back oh ok feel better love u! Umm feel better? What does feeling better feel like? I'm not going to get better that was the damn point of the appointment. I'm just dumbfounded by my 4 loved ones acting the way they did.

After my stress test (if I don't croak from a heart attack) I'm not saying a damn blessed word to anyone about the results. If they remember to ask I will give one of the above generic responses. I guess that is what I have to start doing. It's either no one cares or they just don't want to absorb your health hardships, if that's the case then that equals not caring too.

After having 10 horse tubes of blood being drawn yesterday and all of this swirling shittiness that surrounds me....I can already gather today is going to blow.

I'm so fed up lately. I just want to pack a bag like I used to do, go to the airport with passport in hand and find an available flight, pick it and drop off the earth for a bit. I am seriously starting to contemplate taking a solo spiritual journey soon (if my health allows because we know what prisoners we are because of our diseases). I'm getting too caught up in too many things (wedding planning being one major thing) and whose to know if I will even be around much longer?

6 comments:

  1. I think people shut down, they don't mean to! It is some kind of defense mechanism. It is hard for them to witness and contain the pain of someone they care about. I remember the story about Jesus asking his disciples to stay awake with him the night before he was killed. He was despairing, he asked for them just to be with him. They couldn't. They fell asleep. I think it was too much for them to cope with and they checked out. I don't mean to share this in any kind of evangelical way, I really don't, it just came to mind as I read about your suffering. Keep writing...
    J.

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    1. Hey J,

      We must have both been raised Catholic because I know that story all too well haha. I understand your point that it is hard for my loved ones to witness everything I have been going through and will continue to go through. I promise to keep writing and I appreciate your sensitivity to my health matter.

      A BIG XO!
      A

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  2. Hey! I care. We've never met, but I care. I understand what you are saying. Have had the same thing at times. It's another sucky part of illness. Call them out on it. Tell them it hurts you. In the mean time, keep writing. I look for your posts. I care.

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    1. Hi Robbielynn,

      Your comment made me cry, cry in a good way. Thank you for caring. I care about you as well as I know you pop on my site here and there. I did call them out on it and expressed my pain and frustration with the matters. I know it is hard on my loved ones too but the pain of RA frustrates me more and makes my fuse shorter. How have you been doing/feeling? I hope you are doing well. Please keep me updated. I will continue writing for the few that read my words. They help me from time to time and I hope they give comfort and support to those that need a dose of good ol'fashioned realism.

      Take great care Robbielynn!

      XO,
      A

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  3. A, you have talked with my sister Kelley before, and I just wanted to tell you that we care. I started following your blog after Kelley did and I know that you are in pain and hurt and that your loved ones aren't helping. If there was something that I could do to make things easier for you and for Kel trust me, I would. I know that you guys need to vent, and that is what I am here for.

    I hope that everything went ok today, and I genuinely mean that!

    I look forward to reading your posts!

    Gentle HUGS if you want them!!!!!
    Laurel

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    1. Hi Laurel,

      Nice to meet you and what a beautiful name you have. It reminds me of Greek mythology and a sculpture by the great Bernini of Daphne and Apollo. As they were both being turned into trees she was wearing laurel on her head. Such a beautiful piece of art and mastery. I saw it often when I lived in Rome.

      I love your sister and I hope her level of care is getting better. I am so concerned for her because I don't think her doctors have been straight with her. She's a good gal. I appreciate your kind words and gestures to take our pain away. I wish someone could help a lot of us out, that's for sure.

      Things did go well and not well today or yesterday. I will blog about that sometime this weekend.

      I could ALWAYS use gentle hugs! Great to meet you =)

      HUGS,
      XO
      A

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