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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

Thursday, August 14, 2014

Chronicles of Parenting the Chronically Ill

It's 2:44 am and the dog barks and you realize lights are on in your daughter's room.  You spend ten minutes hunting for clothes to throw on because we have company and finally go out to check.  She's scared and can't sleep and there is nothing you can do about it.  Which sucks.

 You wake up in the morning and start puttering downstairs and realize your husband is crying in the bathroom.  Because the whole thing is just so freaking hard and it is so difficult to trust that you are doing the right thing.

Someone posts this on Facebook and it makes you laugh inappropriately long.
 You split up with the kids because they both have a Dr. appointment on the same day and the one going to NYC is in full blown panic attack mode begging you to come with her and you don't know what to think because half the time it's like she doesn't even know you are alive.

You start getting ready for the other one's appointment and she begins to melt down over leaving the house, ends up sobbing and begging you not to make her because "she's been good".  You call the office in tears of your own and cancel, you just can't do it.

You snort or laugh every time the financial planner/life insurance guys, who came for a consultation, says anything because who the hell has money to put aside for anything let alone to hedge your bets?


You spend what would, to the outside world, the world of not sick kids, an inordinate amount of time on Netflix binges, reading and computer games.  

You are incredibly grateful for days like this one.  Because through it all, we still have each other.
 You become incredibly grateful when someone starts a new support group for caregivers of loved ones with Lyme on Facebook and make a new friend. 

You feel badly for people who love you and want to help and there just isn't anything anyone can do.  You wish you could express how very much they mean to you and that every time they reach out it makes your day just a little bit better.  Every text, call, email and Fb message is precious.

You want so badly to just hug your kids and make it all go away but more often than not, they can't deal with being touched, which hurts because even though they are not rejecting you, it feels that way.  

Your husband makes you howl with laughter describing trying to sneak up on his cell phone map to make the train station behind him so they know which way to start walking to the doctor's new office because he doesn't know how to turn off auto rotate.  Still giggling.

You realize this.


And this





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Tuesday, July 22, 2014

Summertime, Such As it Is

Our dear friends from Denmark are here for a month, two weeks left, time flies.  It finally felt like summer when they walked in the door.  It is so wonderful to have them around.  Due to circumstances beyond our control, we are not doing much but we are having a ball being together. 

 Saturday morning was an ER trip with Rowan, making sure the central line was ok because she was in enough pain to be nervous.  When her pain is so bad she wants to go, we go.  It was stupidly busy but when we finally saw the Dr., it was amazing to find out how Lyme literate he was.  If only my kids had had the "classic" bulls-eye rash, we might have avoided being in the situation we are in now.  In any case, her line is fine, the pain just is what it is.

In the meantime, while we were gone, our beloved Percy Jackson went missing.  We are devastated.  We've canvassed the neighborhood every day, put up a ton of posters and a wanted post on the local shelter's Facebook site.  There is no sign of him yet and I can't sleep thinking I hear him and I can't stop crying.  There is nothing else we can do besides wait and see.  I hate it.
The County Fair is this week and I can't muster up any enthusiasm for it.  But Jenna and Signe want to go for the rides, so I will take them on wristband day and let them have a ball.  I am NOT a ride person. I always have visions of a crucial bolt flying out somewhere.  Mike is crazy busy this time of year and we wanted to go when our friend's band was playing but as it is Sunday night and Mike leads the beach service, it just isn't happening.  

Jenna is on a holiday from her Lyme meds until we get some test results back from Immunosciences to pinpoint her co-infections.  We go back on August 12th for a new game plan.

The lawn is beginning to look like a jungle, the garden is brimming with goodness, and the weather is perfect at the moment.  Traffic is still insane, I have gone out and about and can't believe the way people are driving.  It's madness.   It's summer on the Cape.
Of course, even if they are using a blinker, there is still no guarantee they are actually turning, so I exercise caution and all due diligence.  I've seen people leave their blinker on for miles.  The person behind me who honked because I didn't go really should have thanked me for saving their life instead.  Amateurs.  Ohhh and my new personal favorite, watching people who forgot they are towing a 30 foot boat trailer behind them thinking they have space to shoot into the rotary.  That one will wake you up.

Thank God for Netflix and Amazon Prime keeping us all sane and entertained.  Recent binge watching has been CSI Miami and Longmire.  Two shows we are all greatly enjoying.  Love seeing Starbuck from Galactica in something new. 

We have also enjoyed the occasional poker game and role playing session these past few weeks and morning coffee out on the deck and the sublime feeling of the outdoor shower.

We've barbequed, crock-potted, stove-topped, toaster ovened and otherwise avoided turning the oven on while it is hot out.  I think ordering out is up next, or perhaps an evening at the Falmouth Cinema Pub if anything decent is playing.  I'd love to go up to the Wellfleet Drive-In, but that's kind of a long haul and none of us would stay awake anyway.  

Hope you are having a great summer in whatever way makes you happy.  And hey, keep an eye out for our cat would you?



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Thursday, July 3, 2014

Ups and Downs


  Hurricane Arthur is causing some consternation and cancellations around here but it matters not to us.  It's Cape Cod and it's hurricane season so we just deal with whatever comes along.  Honestly, we sure can use some rain for the gardens.  (As long as it's not so torrential as to completely trash them.)  Fireworks are postponed til Sunday.  I don't know why, last year they did them in a complete fog bank and we couldn't see them at all.  The brightly colored fog was kind of festive though.

Mini Rant Warning: Rant Ahead
  I haven't actually been happy with the whole fireworks thing the last few years.  They have removed all the usual patriotic songs from the event and frankly, that pisses me off more than just a little.  We used to sing along to the Armed Forces medley and God Bless America and the National Anthem.  Now they don't even play them.  I just don't get it.
Mini Rant Over


  Jenna and I went to THE BOOK SALE yesterday and we had a ball.  Going to head back on Monday for the last day which is "fill a bag for a buck" day.  It's like Christmas, but less expensive.  Rowan wasn't feeling up to it and I know that is a indication of how seriously bad she felt because we never, ever miss this event.  It is one of our very favorite things to do every year.  I felt badly for her but I did bring her home the first 3 books in the Maximum Ride series.  I love it and I think she will too.  I decided to re-read it this week, it's been a couple of years.  Hopefully she will be able to join us on the last day.

We went to a lovely family gathering last night to see my niece.  Rowan still wasn't able to leave the house and we missed her.  It is always a blessing to spend any time at all with my family.  They are awesome. 

Today is a follow-up for Jenna at the Doctor.  For those of you who are interested, current Lyme and Babesia symptoms are jaw pain, severe lack of appetite, nausea (probably medication induced) fatigue, neck and back pain, eye issues and headaches.  Also, she's losing weight and she doesn't have any to spare.  Current meds are Atovaquone and Zithromax with Plaquenil, Tindamax, Nystatin and Omnicef.  Had to take milk thistle out of her supplements and no COQ10 while on Atovaquone.  Currently probiotics, alpha lipoic acid, B-Complex, D, magnesium taurate and Serrapeptase.

Traffic here on good Olde Cape Cod is ridiculous this time of year.  Grocery shopping last week there were two accidents in the parking lot that required calls to police!  There have been several near misses for all of us and general observations of insanity every time we leave the house.   Coming home from another trip, Michael had to swerve almost into a telephone pole because some chick just decided she was going to pull out from a side road RIGHT IN FRONT OF US!  People are flying through red lights, blinkers are rarely used and if they are, it's because they forgot it was on and aren't actually turning, so it's like a guessing game but way less fun.  Lots of people who seem to have forgotten the 20-30 feet of boat and trailer they are towing when they head into the rotary, and don't even get me started on The Rotary Games.  Helpfully, the Mass D.O.T. has put up some fun new signs that tell you how long the backup is, which is helpful in absolutely no way whatsoever since what we need to know is where there is back up so we can AVOID it altogether!  Love The Real Cape's take on this one.

Getting the house ready for our annual company from Denmark.  They will be here next week and I can't wait!  Well, truthfully, I am thinking about getting the house ready and making lists, but have not progressed to actually doing it quite as yet. But it is definitely on my "to do" list.

Have a safe and wonderful Independence Day Everyone! Here is some of that Patriotic music I've been missing.












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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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