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Umm, I don't have enough underwear for that...

Wednesday, September 03, 2014

As Ricky Ricardo says, "lemme splain". But first I wanted to share why I needed to give my body a fighting chance. See, apparently my home has it in for me, really.

My pain has continually crept up because of a few things that were out of my control:
Our very specialized (and pricy) 2-year-old air conditioning system flopped and basically died. It's been really warm this summer in CA. AC is critical for my daily life.

My husband left a puddle of water on the floor and forgot to clean it up. Of course I slipped in it later, jabbed my fingers into cupboards, cracking open one of my life-saver sized ulcers. Gross, disgusting. Blood everywhere. Ruined some clothing and a nice towel. Classic me.

A couple of days later I stepped on a straight pin that was sticking out of the bathroom rug. Accidentally fell off my husband's new shirt when he was trying it on. Whoops.

Waddled into the kitchen to get some water the next day and felt a searing burn under my left foot. I was stuck to a dried puddle of lime juice from an accidental spill by my beloved the night prior. Another accident left behind unintentionally.

Icing on the cake: that same morning I went to take a shower and suddenly both of my feet felt like they were sizzling once I stepped into the shower stall. Hubbie forgot to tell me that he sprayed bleach since he was going to scrub it later.

Was my husband trying to kill me? No, not at all I'm sure. I was a clumsy goofball before my health tanked, believe me.
Useless insider info: I was never to be trusted around sharp knives or garbage disposals. Seriously!
Thank goodness there weren't any super stealthy ninja weapons in our house, right? I'd have been impaled on a pair of nunchucks for sure...

But those teeny things kind of pushed my pain into overdrive. And the lack of air conditioning in our living room added insult to injury (err...injuries?). The finger that I cracked open and my feet are still absolutely throbbing and angry days later. Silly.

My body was begging for some pain relief treatment in-hospital, but I had an opportunity to try something new - and had to sacrifice potential pain relief to do it.
Have been talking to my doctors both at the Mayo Clinic and here at Stanford about doing a trial of IVIG therapy. I was told that I am the first EM patient to undergo this type of therapy from a Stanford. Yay me. Where's my sash and trophy???

I've read about people with certain autoimmune diseases achieving amazing results after IVIG. Since I don't respond well to any of the treatments available for EM, I thought this might be something fantastic to try. They all agreed.

To keep it short, IVIG is a treatment via IV that contains antibodies collected from the plasma of healthy donors. IVIG is not used to treat pain, but can help the body to heal and prevent future internal immune system warfare.

Maybe it will slow down my body from continually triggering its own internal breakdown for a few weeks. A 'reset button' for my immune system. I'm in!

Wouldn't it be supercalifragilisticexpialidoc
ious If it worked?!? If I could FINALLY make better progress in healing from my biopsies from the Mayo Clinic in July? Paper cuts might heal faster, bruising might not be so severe. And then there are those threatening puddles of lime juice...
I'm slower than molasses when it comes to healing. Shoot, I'm slower than molasses in the Midwest - in the middle of winter - poured onto an icy cold street, actually. Wouldn't it be fun to change that around for a bit?

Oooh, and get back to a more mobile life? To dust off my workout DVDs and be able to confidently hold a pair of 5lb weights to feel the burn baby! Nab back some sexy muscle definition? Nice. Let's go doc, I've got plans here!

I have to remind myself that I did not come into the hospital because I was in a lot of pain. Gonna have to suck it up since the docs don't want to mix pain management drugs with IVIG.
Perhaps this treatment will communicate to all of my teeny tiny immune system tidbits that they should hold hands and be friends instead of enemies. You know, sing a round of Kumbay-ya around the burning campfire of Ethel that burns so bright, right?

Oh yes, the underwear wail [Ha!]. Initially this was supposed to be a single round of IVIG therapy, and should have taken three days max. Since I haven't had any of the scary creepy side effects thus far [anaphylactic shock being just one of those. Holy Crimini!], they decided to try 2 rounds of IVIG back to back. That translates to a 5+ day stay. I've got an underwear crisis people!

Time to recognize my silver linings and wrap things up.
I'm in a private room again due to the temperature demands of my EM/Ethel. My room is nice and dark. The AC works. I've got ice packs all around me and the staff is great.

Bonus: I can see the Life Flight helipad just outside my window. Really, it's so freaking close! Just a tad too loud for my headache since these life saving heroes have been busy. Entertaining though, so I'll just get past the noise. What an amazing sight!

I wonder if Amazon prime will deliver cotton undies to the hospital? Why is this funny?

' Nuff Said.
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Member Comments About This Blog Post
    I so relate

    1636 days ago
    God bless your husband, but wow... that boy needs to take better care. :( As always though, your cheerful and hope-filled disposition is an absolute inspiration! Hope you got your undies! :D
    1652 days ago
    I hope the IVIG works wonders for you! I've been hearing great things about it and it was featured in my latest Lupus magazine. I feel your pain on the underwear situation, I've been in that predicament a few times. Where is 1-800-UNDERWEAR when you need it. You sit back and enjoy that AC and heal your body. emoticon emoticon
    1654 days ago
    Really hope that it works and heals you!
    1654 days ago
    Time for your hubby to come to the rescue and bring you some underwear.

    There are times when a person enters the hospital thinking that it would be a couple of days and then (like me) ended up there for over a week!

    I hope this works for you. I really do.

    Take care of yourself and make those nurses your slaves. If the AC decides not to work...you can have the nurses standing by your bed, fanning you with those big, long feathered fans! :)


    1654 days ago
    Here's to this working for you & like always keep your amazingly positive outlook and smile face on.
    Btw,you are too freaking hilarious although all those accidents seem horrible timing! My man is just as forgetful & I am equally as clumsy!

    Thinking of your lady & all the best.

    1656 days ago
    I'm impressed that they can keep the temperature lower in one room than another. I remember back to all of my hospital stays when I just dealt with whatever temps they had. I never dreamed they could control temps in individual rooms. How cool is that? ha ha.

    IVIG - I hope that this treatment does wonders for you!! You've always got such a great attitude going into these new things, and I know this one is no different. If attitude really was everything, you'd already be feeling better. I hope that you just feel better and better with each IVIG treatment.

    Pain pain go away.

    1656 days ago
  • CATS_MEOW_0911
    Bren, I am so hoping the therapy works and you finally get some relief! Thinking of you!

    1656 days ago
    Praying for you, sweetie, and keeping expectations of good for you! emoticon emoticon
    1656 days ago
    My Dear Bren!
    I am thinking and praying for you!
    I hope this works for you and you get relief and a better future!
    Love & Healing Hugs,
    1656 days ago
    you seem to be in good spirits. Good Luck with everything.
    1656 days ago
    You are just one of a kind my dear! I REALLLLLLLLLY hope this works for you! HOW HAPPY WOULD I BE???? I would jump around in MY underwear and sing and dance for you (until you can do it yourself). Oh girl, I FEEL the healing begin and I HOPE you are feeling it too!! Good news ahead!!!!
    1657 days ago
  • PICKIE98
    Underwear? DEPENDS on what kind you want!! If it is V.S brand, you are wasting your time.. Hospital personnel could care less what it looks like, they just rip it off and whip it on the floor anyway.. It is not Victoria's Secret anymore.

    There is a Spark friend of mine that has been getting IVIG therapy for about a year now.. They have to watch her BP and elevated temp is another thing.. Headaches, chills,etc are the norm. She takes her for her MG symptoms. It helps a lot.
    1657 days ago
  • no profile photo PATTYGIVENS
    1657 days ago
  • CANNIE50
    I have had a feeling, ever since you told me about the IVIG treatment, that this may actually be a ray of healing, and I am praying (while planking, by the way) that it is. You so deserve some true relief from all the terrible pain. I am glad you are surrounded by people and objects devoted to lessening some of your awful discomfort. I am glad you have a view that momentarily distracts you from what you are going through. I am hoping that you get a delivery of some cute new skivvies, and that your man cleans up all the hazardous sites in your home before you go home! emoticon Thinking of you, as I so often do, sweetpea. emoticon
    1657 days ago
    Yikes! Wishing you better days.
    1657 days ago
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