Blood, Sweat and Tears for the Win

After about a million reschedulings, it finally arrived.  My intraductal meibomian gland probing appointment.  So exciting!!!

screen-shot-2016-11-14-at-1-35-47-pmTodd drove me to see Dr. R for the procedure that I knew was going to be rather barbarous, due to all the investigative groundwork I did beforehand.  You know that about me by now.  I always read up on a procedure before I have it done, so I know all the worst possible things to expect.  Clever, right?  People don’t usually write, “This is absolutely no big deal.  Piece of cake.  I have nothing to write about, because I didn’t feel anything.  I can’t describe what I can’t feel.”  Patients who have undergone a brutal procedure seem to get off on passing along all the gory details to those nervously looking forward to said procedure.  I’ve researched the sh*t out of enough procedures to know this to be true.

screen-shot-2016-11-14-at-1-36-59-pmMy name was cheerfully called and I was taken back to the procedure room.  They were waiting for me.  They being the doc and two (!) assistants.  Really need three of you working on two little grape-sized orbs?  No small talk, this team means business.  I received those drops that take away the urge to blink.  I’ve had those before.  I live for them.  Imagine having to blink while someone’s got a needle in your eye, so you can’t, but you really REALLY need to, so your eye starts stinging like a mother f-er, so much that you think you might die, but you can’t blink because there’s a needle in your eye.  After the drops goes some numbing cream.  Apparently the numbing occurs on the surface of the skin/eyeball only and does not penetrate below, where all the “action” is about to occur.

OK, shall we begin?

Yes, well, I mean, did this cream have enough time to –

Lean forward up against this bar with your chin in the cup.

Okay, but shouldn’t we wait for –

Here we go with the first one.

Oh, OH!  THAT hurts.  Not really sure I can do this 150 times.

But I did.  I could feel those damn needles going deep into each duct on the inside of my upper and lower lids, then a definite pop as it busted through all the clogged gunk.  Dr. R had to push really hard to get through some of my glands.  Chemo and steroids are fantastic, but they also suck when they cause this kinda sh*t.  She said mine were some of the most clogged she’s ever seen.  So awesome!  She had to ask for the larger gauged needle on several occasions.  12888596Each time she did I braced myself in my chair, digging my fingernails into my flesh, trying to absorb the pain.  Tears and snot streamed down my face, and a couple of times she let me sit back to mop it up with the Kleenex I held.  The problem was that my Kleenex was soaked with nervous sweat, so it couldn’t really absorb much.  I could see that my tears were very bloody.  She said that was normal, because of all the capillaries in my inner lids.

Once we were done with the probing, she triumphantly announced that the easy part was all done!  What?  That was the easy part?  Holy f!  The next part, the squeezing, was what most patients complain about most, she says.  Super.  The squeezing is done by pulling my lid out, then jamming one side of these clamp things as far into the crevice between my eyeball and the inner lid as possible and the other side on the outside of the lid.  Then she squeezes really hard while pulling up toward the lashes, pushing all the crap out of the long ducts, ending with what felt like the ripping out of my lashes.  Kinda like squeezing super deep zits.  Barely survived part B with lashes and consciousness.

Ya! You made it!
Ya! You survived it!

Now she’s asking for syringes.  Whaaat?  I thought we were done.  But I’ve already high fived myself in my barely conscious mind.  Now she’s stabbing me with steroid injections in each gland.  Big pinch here.  And again.  And again.  Another one here….  Ya, okay – JUST STOP!

They gave me some prescriptions to ward off infections, then left me alone in the room.  I caught a glimpse in the mirror.  I looked like I’d been stabbed in my eyes 150 times or something.  I was a crimson-eyed zombie.  I walked out to reception.  The waiting patients didn’t know where to look.  They were terrified.

On the drive home, even though I was in quite a bit of pain from the procedure, I could tell my eyes were cured.  My glands were flowin’ freely and it was glorious.  Each day, I’m reminded of what normal eyes feel like.  I’d forgotten.  It’s a miracle procedure and I’d go through it all over again.  Actually, I might have to.  About half the patients have to repeat the procedure.

My cocksacker symptoms are almost all gone, save for my feet almost peeling themselves into oblivion.  The blisters that first appeared with my hand, foot and mouth disease diagnosis have since broken open and peeled and peeled and peeled.  I was unaware that the soles of our feet have 763 layers of skin.  Did you know that?  Not ideal.  I feel this peel is the real deal.

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Sorry, I’m such a heel for posting yet another gross photo

The term Bucket List has always kinda bugged me, having a negative connotation and being just SO overused.  So I’m now calling it my Buttkick List.  I’m doing my best to kick my new life’s butt, so there you go.

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Ice ice baby

Speaking or writing of butt kicking, here is an update to my Buttkick List.

I’ve always wanted to go to Iceland.  Like way before it was a thing.  We had a trip planned in 2012.  The whole thing – flights, hotels, guides, currency exchange rates and simple Icelandic phrases memorized.  Then IT happened.

The Blue Lagoon's volcanic mud masks made our skin as soft as babies' butts :)
Blue Lagoon goons

Trip cancelled.  Four years later, we revived the plan.  Todd, my longtime pals, Karen and Sharon and their hubbies, Scott and Craig and I kicked some ass in the land of fire and ass ice.  We √ice climbed up a glacier hole, thanks to some expert guiding by our incredible friend, Ólafur Þór Kristinsson aka Viking.

 

We took an amazing √dip in the Blue Lagoon, complete with mud facial masks, in-water cocktails and massages.  Viking introduced us to √canyoning by taking us through a pitch black cave, waist high in 34 degree glacial runoff.  He wore his Supermans, because he’s Super Viking!

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Canyoning with Super Viking!
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Fine Toe Jam Cabernet vintage

Todd, Mychaela, Rex and I made a quick escape to Napa to celebrate Todd and Mychaela’s October birthdays.  We had a great time eating, tasting, laughing and just being together.  Perhaps the highlight was √grape stomping at Grgich Hills.

Fifty American soldiers will be receiving holiday care packages, thanks to my many friends who contributed items, then helped me pack everything in boxes. √Sending care packages to our troops has been on my list for quite a while, and I was so touched by the incredible support of my generous friends!

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Supporting the troops!
Secret seclusion
The threesome having a great time in SD

I’ve never √taken a trip by my lonesome, so I headed to San Diego for a few days to concentrate on writing my book.  It was soooo nice to get away and spend time with just me, myself and I.  We had a great time and got lots of writing done.  Stay tuned 🙂

 

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I am a survivor of two extremely rare diseases, thanks to over 100 blood transfusions and ultimately, a bone marrow transplant. My blog, joselynsbrawl.com, chronicles my adventures through medical offices, operating rooms, clinics, transfusion centers, hospital transplant floors, victory celebrations, and finally my bucket list items – all with a humorous and sometimes profane twist. My goal is to inspire others not to give up on life or anything else, and to understand that it’s actually possible to enjoy any experience, even battling a life-threatening illness (or two).

20 thoughts on “Blood, Sweat and Tears for the Win

  1. That sounds just awful. So glad the procedure worked and you are able to continue with your Buttkick list with family and friends. You continue to inspire me!!!

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  2. You are such an original voice! Keep it up. Keep writing even if you don’t like what you write at first. It will all come together and I will look forward to reading it, what ever your subject👍👍👍

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  3. Another heroic review of the pains of illness and the shout of victory after the last 150th needle. Oh what agony before victory. Just another hurdle in you march to victory. Emilie would have been so proud of your strength. Bob Barnes

    On Mon, Nov 14, 2016 at 2:50 PM, Joselyn’s Brawl with Shulman’s Syndrome & Aplastic Anemia wrote:

    > joselynmiller posted: “After about a million reschedulings, it finally > arrived. My intraductal meibomian gland probing appointment. So > exciting!!! Todd drove me to see Dr. R for the procedure that I knew was > going to be rather barbarous, due to all the investigative groundwo” >

    Like

  4. Wow! You should probably legally change your name to Jocelyn Buttkick Pomeroy Miller!!! Your bravery and writing are phenomenal!!! A book will kick butt!!!! Thanks for my box! No other excuse other than I f…ng forgot!!!

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  5. The descriptions of your medical procedures always make me cringe, but needles in the eyes? Holy s–t. I hate needles, but in the eyes – OMG. I like the new name for your list – butt kick has a nice ring, so once you refocus, I hope you go kick some. Incredible story. Incredible life. Love ya, Lynn

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  6. Oh Jos, this time of year, faith & hope are two things we seem to hold a little closer in our hearts & minds. We tend to “see” more clearly how much we are truly blessed, by both giving & receiving…but Good Lord, Girl, YOU have given way too many body samples, specimens & snot. Enough! May you & your darling family be abundantly blessed this holiday. Auntie M and Uncle Jon feel so sacrosanct to have you as our most positive inspiration. Jubilant that this nasty procedure is over with & successful! Happy Thanksgiving, Happy Eye-Sight, Happy Ductal Systems are Free & Clear! Love you Honey!

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  7. Keep the blogs coming Jos. Sharing your lows and highs gives us folks the inside view of what you are going through. Life is a four letter word and you rise above each life’s challenge you face and then give back, which is god’s precious gift.
    With the gunk removed you can now “eye” your next project on your butt kick list. Thanks for keeping us up to date on your journey for so long.
    And don’t forget, whatever you need, the answer is yes.
    So the “eyes” have had it and you are rockin’ and rollin’!!
    Let’s be,
    Bart

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  8. HI Jos,
    So sorry you had to undergo that eye procedure! It sounds awful! I hope & pray you dont have to do it again!!! Hang in there & keep workin on the bucket list!

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  9. So sorry that you have experienced so much pain and suffering. Too many people do not understand what chronic illness does to individuals… bit and bit, little by little. You have overcome so much and your story will help many. God bless you and your family!

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