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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

Friday, September 26, 2014

Normal for Us

 “Ah, September! You are the doorway to the season that awakens my soul... but I must confess that I love you only because you are a prelude to my beloved October.”
  ~Peggy Toney Horton

 
Almost the end of September, we've had a few cooler days but it's warmed up again.  Finally got some badly needed rain.  Gardens will be happy.  Not much left out there, a few tomatoes, some peppers and three baby watermelons left to harvest.

8th grade is going well.  Jenny's logic class is particularly fun and she makes me laugh while she studies.  Quote of the day yesterday, "ad hominem, red herring, you have to follow the rules people, or this is just a common quarrel!"

We went to King Richard's Faire last weekend with some friends, Rowan wasn't up to it, which made me sad, but Jenny got the tickets for her birthday and it wouldn't have been fair not to go.  It was fun and festive and a feast for the eyes.  I had always wanted to go and never made it.  The joust was a hoot, there were so many beautiful things in the artisan booths I would have killed to have.  We watched some pretty cool shows like a guy juggling fire standing on a ball.
 On the Lyme front, Rowan is battling hard, sensory issues are insane and she is in pain and in bed a lot of the time.  On the 6th week of 8 iv/orals protocol.  We go back to NYC to Dr. Raxlen October 7th.  She still has her sense of humor sometimes though. She dressed up her IV pole like a dementor from Harry Potter.

Jenna is responding to meds this time around, finally hitting her bartonella.  She maintains, as always, her unique sense of humor. 
Dad: Did you take your pills?
Jenna: Yep, they are destroying my liver as we speak

It was 2 years ago last week that we mourned the loss of my beautiful sister in law, Becky.
It doesn't seem as if it could possibly be that long ago.  Miss her still and always.
Our new kitty is a love, she is 8 and a complete cuddlebug.  She high 5's.  Also, she drools.
Arwen's eyesight and hearing are failing, she is getting old.  How can I tell?  She didn't even see it!
Knitting an adorable skirt for Jenny, reading Kim Harrison's Hollows series, enjoying it very much, on the very last book.   Waiting for a chance to watch the season premiere of Sleepy Hollow because it is one of the shows Mike loves too so I have to wait for him.  Still wanting to catch up on the new season of Dr. Who, but they want $6 for the first episode and I object.  Hoping very much to go back to Honeypot Hill Orchards in Stow soon, we had such a wonderful time last year.   October is almost here, my favorite time of year!

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Wednesday, September 17, 2014

September, A Tad of Miscellany


 “What New England is, is a state of mind, a place where dry humor and perpetual disappointment blend to produce an ironic pessimism that folks from away find most perplexing” ~ Willem Lange

  Our annual family camping trip to Washburn Island was nothing of the sort this year.  With no way to keep clean, let alone sterile, Rowan couldn't come out and Mike was working.   Jenna and I went out and she woke up sick in the morning so we came home. I then went out alone, just me and the dog for a few days then was joyfully reunited with Jenna for a week together.

 I really tried for relax, refresh, renew, but there was a lot going on at home and with family that I needed to take care of from afar and worried about a great deal.  Jenna did get some badly needed R&R with her dear friends and I was very glad for that.  Arwen got to sleep on Jenna's air mattress while she was gone, so she didn't get as gimpy as she has in years past.

  It wasn't the worst vacation I've ever had, but it just didn't feel right.  
  When we got home, Jenny had some tests done and went back on meds for Lyme and Bartonella, one of them is really hurting her stomach so I have ordered something called DGL supplement.  It is supposed to help coat her tummy before she takes her antibiotics, should be here in two days.  Between those, ginger chews and probiotics, hopefully we will be ok.

   Rowan is back on two weeks of iv after two on orals.  She had an ER trip the one night Mike was on the island with me.  Our dear housemate took her in at 11pm and they didn't get home until after 3am.  From that I needed to coordinate from the island, a follow-up with our primary as well as a follow up with a specialist to diagnose an "atypical ocular migraine".  Our beloved housemate took her to all the appointments, he is such a life-saver.

   Meanwhile, Jenna started 8th grade and turned 14.  We had a small family gathering wherein we all had a wonderful time together and a semi successful Skype visit from those who were away.
  Getting things ready in the house for fall.  Tidying, dusting, putting things away and such.  It always seems smaller, somehow, once the windows and doors are closed up.  The air is crisp and cool in the mornings and it is perfect sleeping weather.    

  Mike, at last, built a shelf addition to Jenna's desk for all her schoolwork.  It is perfect because she now has all her desk space back.  
Next step is to clean out the wood stove room from the mess that accumulates all summer and have that ready to go and borrow the splitter to get all the wood we have ready to burn.

Off to new adventures, King Richard's Fair and Honeypot Hill Orchards coming up!

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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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