Thursday, March 27, 2014

Fudge You 2014


During some of the days before and after my surgery, Daddy and I often talked about how we couldn’t wait to ‘get back to normal’. When Daddy left for his trip we talked of how close we’d be ‘back to normal’ when he returned. One of Daddy’s tasks he assigned while he was gone was to list everything I was looking forward to about ‘getting back to normal’.

Today I learned we won’t be ‘going back to normal’. Not any time soon. Maybe not ever. Early this morning the doctor called with the news I really hoped I wouldn’t be getting.

Daddy was at work when the call came and he’s having another busy day and even though we’ve managed to talk and text, I really can’t wait until he’s home. So far, I’ve managed to stay busy. I had doctors to call, appointments to make, and new doctors to research. But now that’s all done and there’s still nearly three hours to go before Daddy gets home.

And I’m scared and frustrated and angry. Very angry. I mean I know it’s not cancer, but it’s fatal if I don’t treat it. And treatment involves taking high doses of oral steroids and immunosuppressants that have side effects that will most likely make me feel way sicker than I feel now. And since it’s so freakin’ rare, the doctor who diagnosed it doesn’t even know where to start to treat it so I’m off to find yet another specialist (and hope to God they take our insurance).

And this is all I really have to say today (well I have more but it would involve using words I’m not supposed to use and despite the fact I'm thinking them all right now, I do still love and respect Daddy so I think I’ll stop right here).

8 comments:

  1. I care for my blogger friends more than I ever expected. Aurora, in a different life, I would pop on over with some coffee in my pj's and give you a hug. Please know this is my offer here in this stupid/wonderful blogland. I am here, as are so many other of your blogger friends, for a shoulder, a laugh, a share of a fun/sexy story to keep your heart light. THIS is my warm cup of coffee and girl talk. THIS is why Phillip asked you to post here. We've got your back!! Love to you my friend....You will be in his arms before long. XOXO Pearl

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  2. Hugs, I'm so sorry the news wasn't what you wanted to hear. I totally understand the merry go round you must feel you are on. Might I suggest that your primary doctor or the one who diagnosed you may be able to help you find a specialist. Finding a support group might also be helpful. As for the meds, there are a plethora of different oral steroids and immunosuppressant's out on the market, if you can't handle the side effects of what is prescribed, ask for something different. Musicman takes immunosuppressant's also, the first one made him so sick, I had to stand up the doctor's and tell them they HAD to pick something different. I've also fought with insurance companies to get meds covered for him because he couldn't deal with the side effects of the ones covered. It's not easy, but it is doable. If I can be of any help, please feel to email me. faerie47@hotmail.com. I'm always willing to share what I know about navigating the health system.

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  3. ack no, I'm so sorry xxxx

    still, at least having a diagnosis gives you somewhere to start?

    (((hugs)))

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  4. So sorry. I'm cursing on your behalf.
    I'm with Pearl. Whatever you need in the virtual world, we're here to listen and help.
    hugs
    DF

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  5. I am sorry to hear the test results aren't what we had hoped for Auroa. One step at a time though right? Perhaps this new doctor you find will have ideas to counteract the side affects you might experience. Perhaps you might not be the percentage that feels sick. It can happen you know? Barney's sister wasn't even sick on chemo. My gf didn't loose her hair. So there is hope.
    Also perhaps there is an online support group or forum for this disease you have and people there will be able to tell you what works for them...
    All that being said though F YOU 2014 for sure. Take your time to be angry, you can't deny those feelings. Then take a deep breath and move forward.
    As Pearl said we will all be here for you to listen and to shout out at the universe for you in bad words if you like ( I don't have that rule so I'll gladly do it for you!)
    hugs
    willie

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  6. Thinking of you. Normal or not you are a part of this community and we do care for you. Please let us know if there is anything we can do. Sending our prayers

    hugs
    p

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  7. Aurora, I am so sorry. We are here for you to lend our love and support. Sending positive thoughts and prayers and hoping you find a good specialist who can set you on the right path in terms of treatment.

    (((Hugs)))
    Roz

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  8. Remember ... you have this thing IT doesn't have you!!!

    (((hugs)))
    gk

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