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Wherein you will find posts with humor, photos, reviews, occasional rants and journalistic entries of interest to me alone but that I hope will touch you, the reader, in some way. I remain sincerely yours,
A Work in Progress

Saturday, June 28, 2014

A Crack in the Ice


 
Mike and Rowan and I headed back to NYC to see Dr. Raxlen again last week.  It's a 3 hour drive to New Haven and then another almost 2 hours on the train in to Grand Central Station.  I really like the train and wish we could take it all the way but it's too expensive.

We grabbed take-out at the station and took a cab to the Lyme Medical Resource Center where we enjoyed lunch on the steps and then went on in.

When we walked into his office he was perusing her files.  He was snorting at some of the things other doctors had written up about Rowan.  Specifically, that she "has repetitive motion bursitis" when she was 15.  He said there is no repetitive motion in a 15 year old that would cause bursitis, they are 15!!!  He was also fuming about the fair few who told her that if she lost weight she'd feel better.  He is such a good man.
So we all sat and he spoke with Rowan, going over how she feels, her current symptoms and the like.  When she shared that her light sensitivity was improved, as in she no longer runs for her sunglasses and closes all the shades in the house, he was greatly encouraging.
He remarked that she was like a frozen lake, layers of ice, and slush and that while we were nowhere near water, there are "cracks in the ice." 

Bartonella is still her biggest issue symptom-wise and he added IV Zithromax to her meds to pulse on the three days a week she isn't doing IV Ceftriaxone.  He also added a new medication to help her irritability and neuro issues with Bartonella as well.  Added a supplement and changed amount on a few others.  He also wants her on IV Glutahione but insurance won't cover that one so I am trying to find it somewhere we can afford it still.  We go back to see him again on August 12th.

In the meantime, Jenna is on Month Two of her oral protocol and we just added in a loading dose of Atovaquone for Babesia this morning.  Her stomach is upset a bit but so far so good.
We still need to run her blood-work at Immunosciences soon for co-infections.   She goes back to the doctor on July 3rd.

She had her first cello lesson while we were in NYC, I was so sad to have missed it.

Our very favorite Book Sale on the Green starts on July 2nd, we are really looking forward to it.  We always go on the first day and the last when it is "fill a bag for a buck" day.  Our dear friends from Denmark arrive the 11th for a month and we can't wait to have them here.  Summer is in full swing, such as it is for us.  Lots of resting, reading, binge-watching Netflix.  Jenna and Mike started their annual gig doing campfire songs and s'mores at a local motel this week.  Gardening is good, the tomatoes are looking fabulous this year and we've already harvested beans and zucchini.  We have some family gatherings to attend that we are looking forward to as well, especially seeing my niece who is coming in for a few days from California.

  
If you or someone you love has Lyme you have to be your own advocate, get educated.
Understand the flaws in the testing and how to read a western blot. http://lymemd.blogspot.com/2009/02/understanding-western-blot.html
KNOW that if your test is CDC negative, the lab will mark it negative and it shouldn't.  
That is where we lost TWO YEARS in the battle.
Find and go to a Lyme Literate MD. 
Get this book, read it, highlight it, underline it and go in armed with real information.



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Friday, June 13, 2014

Love Letter



  You were in your "monk" phase when we met Mountain Man.  I thought you were pretty cool, mellow, soothing to be around.  Four years went by and I don't know when it happened, exactly.  You were graduating a semester before me and all of a sudden I panicked.  Life without you around?  So I wrote you a poem and put it in a graduation card.  I laid it all on the table, poured out my heart and soul.  And you still didn't get it.  I was flabbergasted.  What the hell?

  We sort of dated and then you panicked and took a job in Oregon.  Could you have gotten farther away?  Seriously?  But, out there alone, with time to think, you finally got it.  You sent me a mixed tape and on it was a song you'd written for me.  I wore out that tape. 

  Later that summer, you sent me a plane ticket.  You'd gotten us a weekend at a gorgeous little B&B on the coast.  You met me at the airport with a gift.  It was a Swiss Army knife that you later appropriated.  And we sat, after a walk on the beach, in front of the little wood stove at the B&B and you started to play me the song.  
And you played it wrong, which, of course, I promptly mentioned. 
'Cause that's the way I am, romantic to the core.

  And that was it pretty much.  It was you and me.  You wanted to propose on the mountain by a waterfall you'd found.  That didn't happen, I had a new book and didn't want to go when you casually said, "are you ready for that walk?"  Months later, we went for that walk.  We never did find that waterfall.  We trekked up and down that stupid mountain all day.  Timing is everything.  But you'd already proposed by then, good thing.

  We got married, we had one beautiful girl and then another.  We bought a house and we made it a home. 

  In all these 22 years, we've lived, laughed, loved, lost and endured you and me. We've had good times, hard times, great times, times of soul wrenching loss, times of unsurpassed joy.  But mostly, we have just been blessed with time together, you and me.  And I am so very thankful.
"Some things, when together, are more complete than when standing alone."
Happy 22nd Anniversary my love

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Tuesday, June 10, 2014

Life Goes On

My Mom has been reading my old blogs.  I had them made up for her in book form for several years and she just dug them out and keeps emailing me about them.  So I started going back through my own archives.  I laughed, I cried, I smiled with memories and photos and I could very clearly see the posts where I worked at the writing and where I clearly did not.

Lately, I have posted but not written, you know?  And I miss it.  However, sharing thoughts and feelings these days is kind of like putting a match to a powder keg.  

I am angry, sad, frustrated, regretful over a lot of the Lyme stuff with our girls.
Last week I was so hopeful, we had a really great couple of days and they were so precious to me, I felt like we had our Rowan back.  She danced, she sang, she socialized, it was a rare and wonderful sight to behold.  Fast forward a couple of days and she is an invalid again with crippling, out of control anxiety issues and panic attacks.  A terrible thing for a parent to see her go through.  A terrible thing for a parent to go through. 

There is a scene from Firefly, War Stories episode, where River Tam says this, 
"Played with Kaylee. The sun came out, and I walked on my feet and heard with my ears. I hate the bits, the bits that stay down and I work, I f-function like I'm a girl. I hate it because I know it'll go away! The sun grows dark and chaos has come again. It's... fluids. What am I?"   It sounds so much like Rowan these days. I can barely recall what she was like before all this anymore.  But I do know that it wasn't this.  Praying we can get some help at our next visit to her Doctor in NYC.

I don't mean for it to sound like life is all bad.  There are lots of bright spots.  We have folks here many a day that brighten our spirits.  Daily chats with my Mom and my sisters and my dearest friends whether by email, Facebook or text always make me happy. 

Took Jenny thrift store shopping to celebrate finishing the 7th grade last week.  We almost had to turn around and come back, she was so nauseous from her medications.  But we slowed it down til she felt better and managed to have a pretty fun day.  She found a few items she loved so we came home in triumph.  We hit Taco Bell and took her on her first trip to an army surplus store as well. 

Yesterday was a mixed bag of crazy, wonderful friends and not great moments.  It balances out most days.  I am trying very hard to stay peaceful, my stress levels, if I let them out, throw off the entire household.

A few weeks ago, rather than go bonkers in the house, I took off to the beach for some salt air therapy.  I am a Cape Cod gal, born and bred and nothing soothes me like the shore.   I pulled in to the parking lot, opened all my windows and just quietly breathed.  In a few minutes, I was silently praying and listening to the waves, my shoulders had begun to retreat from my ears and I had just gotten in my head to, "be still and know that I am God".  All of a sudden, in rolls a car, blasting across the lot to park right next to me and was blaring Highway to Hell. You have got to love the irony.

In case you don't live by the beach, here are a couple photos to add peace to your day of some of my favorite places in the world.

  









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