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The next chapter.

Monday, December 16, 2013

Strange week for me, as this will be my last week at work. Time to go on disability. I've been at my job for over 13 years, but Ethel has just become too much. The swollen bumps and lesions on my hands and feet make it just insanely painful to move much, on top of my daily swelling and pain. I feel like I have to move mountains in order to walk more than a few feet, and driving is a bit too challenging for the time being.
My pain doctors said last week that they were concerned that my EM was actually deforming my hands, and want me to start coming into the hospital for a week-long stay every 6 weeks to try to help with pain. There is just no way to get around that and trying to work. And I can't work part time.

I feel like I've been defeated, and I'm also pretty p!ssed to be honest. But perhaps it is for the best. I've worked a lot longer than anyone thought I could have, so hoorah for being a persistent chick! And of course, there's a slice of me that is hoping that I get some major pain relief soon, a cure for my disease, and can get back to work. That would be so great!

Happy to say that there is a silver lining to being stuck at home from work though (yay!).
The Mayo Clinic has contacted me in response to my doctor's 2nd petition to try to help me.
So exciting! Especially since they turned me down years ago.
I will need to get to MN in February of 2014. Can't fly anymore due to what the pressure does to my system, so we are trying to figure out how to get me there. Randy will chaperone me, which is great, and we are both excited. I wish I was like one of those CIA agents who get knocked out and shipped all over the world in a box lickety split like in my books. Ha!

So now I guess I will be reading a lot of kindle books on my ipad and navigating the storm that is Ethel for the next bit in between treatment. I should feel thankful for the time and I know that I will soon, as so many others don't have health insurance or the option to go on disability. I am blessed for sure, but also unfortunately bitter since this was not a part of my plan. Need to shake that last part off.

I will get to be home for Christmas, but will check into the hospital on 12/30 for my next round of treatment. I need to use this time to listen to my pain, and stay still when needed. I also need to use this time to pay attention to my emotions and not allow them to feel as though they trigger me to eat poorly as a result of it. Bad eating certainly won't help my body!

'Nuff said,
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Member Comments About This Blog Post
    I'm so sorry I missed this! I haven't been very consistent here lately but I'm glad I came poking around your page emoticon
    You are never defeated girlfriend. Just a new path and a turn in the road that's all. It is amazing what you do and more amazing your positive attitude through it all. I'm happy that you'll be able to Spark more.....lol. Selfish one I am! I hope to be here more too now that the holiday crazies are over. Know that we are all interested in your progress and journey so keep the updates coming.
    1906 days ago
    "I feel like I've been defeated, and I'm also pretty p!ssed to be honest."
    * Sorry to hear. I would be as well.

    " I wish I was like one of those CIA agents who get knocked out and shipped all over the world in a box lickety split like in my books. Ha! "
    * What books do you read/write?

    I can tell that you're excited. Most people going to Minnesota in February are not so joyous. If this is your ticket to good health again though, I'm happy for you!

    "I am blessed for sure, but also unfortunately bitter since this was not a part of my plan. Need to shake that last part off. "
    * I wouldn't shake it off, honestly. I'd process and resolve it. But that's me.

    Keep fighting the good fight. I'm proud of you.

    1909 days ago

    What a life you have. My DD2 says hello to you by the way. I often read your blogs out loud to her or my husband. Just because I like you so much and I want to open their eyes to other people's lives. Making them learn that there is always someone out there that has it either worse or just funny or takes life in stride.

    You are very loved here. I'm often asked about you, how you're doing and such.

    I'm so sorry you have to go on disability. You're such a determined person.

    What a blog. Moving mountains in order to walk. No wonder you're in pain. I don't think I would ever consider moving a mountain. I'm just not that ambitious. Nope. Not at all. ;)

    Great news about the Mayo Clinic. I really hope things work out for you.

    I really do.

    Take care of yourself and know that we are here. Cheering you on!

    1914 days ago
    Dear Friend,
    I just read this blog, somehow I missed it...I am keeping you in my thoughts and prayers
    for you to have less pain and get help! I understand due to my DH and his health dilemmas and my own issues. Please know I care about you, wish you good things and I am here, if you should need
    a shoulder to cry on...sometimes it is actually easier with friends who are "out there".
    Love & Hugs,
    Mary emoticon
    1917 days ago
    1918 days ago
    It's normal to have mixed feelings about this. But, please, Bren, don't feel defeated. You are an amazingly strong woman and this is YOUR decision. Try to focus on all the good things that this decision has to offer. And if it means some much-needed pain relief for you, it surely is a wise decision, isn't it?
    I'll be praying for a cure.
    1921 days ago
    You know it is my hope that not working (soon) will be really good for your pain levels and your symptoms. I also hope that Mayo takes care of everything and figures out something that nobody else has yet. But please don't feel defeated that you have to leave work. Nobody knows what tomorrow brings, you may yet get to (have to?) go back to work yet. But in any battle there are times that you have to switch the front on which you are fighting, and this is just one of those times - you are NOT defeated, you're just switching the fight to another front! Now, to get you to that front in the least painful way...I hope you guys find something that works really well!
    1921 days ago
    Wow Bren. You always amaze me. You are a RIDICULOUSLY strong woman & please don't be humble. I know if I was going through what you do I would have definitely let it get me down but you just have such a positive outlook and I admire that so much. Great to hear that you will be able to be home for the holidays & cause a ruckus on the ward on NYE girl!!
    1921 days ago
    I have to say I'm not excited about you being knocked out like a CIA agent so I hope you can find some sort of non-injurious way to knock yourself out to get there! What a great prospect. I have all my parts crossed that they'll be able to help you. I'm so sorry for the hard and painful parts of the process. I'm sending you many many many hugs. And I think you're a shining star for keeping your amazing perspectives!
    1921 days ago
    Keep the faith and I'm hoping the Mayo Clinic doctors and staff will be able to help you!
    1921 days ago
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    1921 days ago
    Great! You are finally making progress in getting proper treatment and being at home will help of course. After retiring it took me many months to recuperate and I don't have your illness. Being home can be pretty neat. I thought I's get down but I am liking it. Wishing you all the best! Don't give up. SP friends will help you through anythhing. Love, chris emoticon
    1921 days ago
    You have been through so much! It will be nice to just be able to conevntrate on your health instead f pushing through just to function. You're so brave. I love you to the moon and back.
    1921 days ago
    Everything happens for a reason my dear friend. However, sometimes it's not always clear on the why. You need to take care of you and work can come again later. I'm happy the Mayo has invited you to come visit; praying they find some remedies for what you are going through. I look forward to meeting you in person come February. It will still be winter cool for you.
    Hugs ~ Melissa

    1921 days ago
    I am so happy mayo accepted you.
    Don't look at this as feeling defeated, look at it from the
    perspective of taking the time to focus on getting
    you better. When you are healed then work
    if you want to.

    You are going to have haPpY FrIdays for a
    while now.
    I am pulling for you, you are a strong lady!
    1921 days ago
    That would be fantastic if Mayo accepted you!! Maybe they can work their magic and get you some relief from the pain. Never beat yourself up about this , you are the most important person and you need to take care of yourself. 2014 is going to be your year for some miracles!! emoticon emoticon emoticon
    1921 days ago
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