I want to wear blue wings and soar

above the screaming

tantrums of today

I will take you with me

(hold you)

as we gaze down

upon whispery earth

at tiny beings

scuffling about

checking their clocks

and bank accounts


the life of a bird

who does not love so much

that it hurts






Short PANDAS, PANS and Lyme Blogs


Feeling a Little Like Job

I need a good drink and a long cry. Can't drink till Saturday thanks to Tindamax and can't cry till the kids are asleep and by that time I am asleep as well. 

We will get through this. Always have. Although half my kids' lives have now been semi-drowned with disease. 

I will stop questioning why some people get smacked in the face by multiple unsolvable medical illnesses that nearly require hospitalization (umm, us) and be grateful that it wasn't someone in my family who was still entwined in his seatbelt with the front of his car severed off on the side of the road this morning with emergency crews all around him. 

Yep. Life is that warm blue air out there and a moment by myself.


Tutors and Teachers

My son is homebound again, and getting tutored by a teacher from the school district.

The irony is that this man was a student teacher seven years ago when my son was in 2nd grade. I do recall that my son liked him and was sad when he left. The teacher remembers my son as being an active little boy. 

I can't stop thinking about the changes the teacher must see in this son of mine. In 2nd grade, he was a cheerful, smiling, energetic child with lots of friends.

I'm grateful that my son gets to work with someone who is gentle, understanding and very good at teaching, and that the teacher actually recalls that this boy was once filled with heaps of happiness. 

We will get that back. Or at least some of it.


Summer Slides By

It's been a long time since I posted a "Quick Update." I cannot write about my kids as I once did, as they're getting older. And embarrassed. Suffice it to say that we've had a challenging year. Adolescence and hormones tend to rev up Lyme. I can vouch for this personally. Once a month, I have a ramping up of my own symptoms. 

But despite all our struggles, we have gone to the beach at least 11 times! My whole family LOVES the ocean and the bigger the waves, the better. I am living in each day without looking behind or into tomorrow...but I suddenly became very aware today (when mail from my school came,) that I'm going back to work in 10 days!

I have NOT accomplished all of my personal writing goals for this summer. In fact, I kinda have writer's block when it comes to that novel I'm supposed to complete. I have not been bicycling much--well, ever since my bicycle tire went flat AGAIN. My husband hasn't yet fixed it for me. But I've walked for an hour or more nearly daily with a best friend, and for that I'm grateful. I might be tired the rest of the day, but it doesn't really matter, I've found. It's not so much about using up all my spoons this year--it's about being tired by 2:00 each day no matter what I do or do not do! 

The fatigue is ever-present. I'm taking a break from antibiotics and my doctor thinks I'll be back on them in September (after beach season--I'm already super-tanned and praying to the sun gods to not wrinkle my skin overly much as I age.) But taking a higher dose or curcumin has completely changed my life/my back/my right hip. Yay for curcumin and black pepper!

Walking, swimming, bicycling, hanging out with my kids and friends, having more quality time with my husband, going to NYC...I could so totally live like this! I won't complain about 95 degree days because I remember the horribly frigid winter we had. I'll just take the kids to the beach again! 

When I'm working, despite the fact that I love teaching children, I'm tired and I find myself counting the days until the weekend. The weekend comes and I have to do laundry and chores. I try to catch up on missed sleep. I don't live in each day the way that I have this summer. But I see now that I need to do just that. I wish I could swim through the waves, jump the waves, fight the waves every day--for more entire focus goes to the water and to my kids, leaving no room for worries or stressors. It's just about sea and sun and saltwater in my eyes. And that, I love.


Meaning of Illness

Me, to son: I wonder sometimes, what's the meaning of all this (medical hardship)?

Son: There is none, it's just science.

And, as my friend reminded, me, politics also.


IVIG #11

Woke at 5:40 AM today so that I could jump into the shower before we left. Hair was dry when we walked into 8 degrees of icy black skies. The sun slowly came up as we drove east to the infusion center; it was not a spectacular sunrise this morning. My son sat beside me, holding his iPad, with thick earphones on. I played my own music.

I heard #11 is the magic number, I said to the nurse who knows everything about the place. Maybe, he said. Not for every child. 

And we did have a space of over a year when there were no IVIGs.

In the beginning of my son's treatment, after rounds of antibiotics and prednisone tapers, we tried IVIG. He shortly went back to school. I had heard there could be a rolling back of symptoms but his symptoms continued for nine weeks. Nine weeks of a miserable child who hadn't been himself in two years, a child who didn't want to live. And then--around the 9th week mark--he was back! Our son was back!

Around this time, we learned that he had Lyme Disease also. His "back" didn't last very long and at the 12th week mark, we had another IVIG. Enuresis disappeared literally overnight, forever. IVIG was doing something good. But it wasn't permanent.

Many months later, when my son was still in very bad shape, I spoke with a parent from MA and realized that the only thing that had helped so far had been the IVIG. Something had improved, even if the littlest bit. I had to hold onto any improvement I saw.

So, here we are at #11. A long day of sitting. Dreading the headaches that often come a few days later. Hoping that each time will get a little easier. And it is. He doesn't vomit anymore. We do use light prenisone even though he has Lyme. It works.

His dad goes with him tomorrow, which is perfect timing since I came home and haven't stopped sneezing since. I cannot walk into the infusion center with germs (although I probably did...I did wash my hands a zillion times.) 

As long as my son's immune system needs the support, the insurance will cover some of the IVIG. I'm not even sure what kind of bill we're going to get this year, though. Higher deductibles could mean fewer IVIGs in the future.