Wednesday, February 29, 2012

Walking a Thin Line

When your doctors start apologizing to you, you know you're in trouble. It's not a good sign if you feel the urge to reassure your doctor as he or she leaves the exam room. The last couple of times I've seen my rheumatologist and his p.a., they've both apologized.  My gp has apologized. Until I had RA, I never realized how many patients there were who doctors don't know how help.
 And now I get to be one of them.

After repeated rounds of shingles over the past 20 months and a severe lung reaction to methotrexate in the fall (methotrexate lung or hypersensitivity pneumonitis), I'm walking a very thin line.

Every time I suppress my immune system, I come down with shingles--so no more Orencia or kenelog shots or higher doses of oral pred. Over Christmas, with an oral pred dose of around 15mg and overdoing it a bit, I managed to have a small outbreak.  My lungs are also still sensitive, so I still have days when I am short of breath, though that does seem to be improving. With both of these problems, there is no standard treatment. No one knows what to do next. And so that thin line.

Right now I am taking only hydroxychlorquinine, about 7mg prednisone, and celebrex for my RA. In other words, not much, but it's holding fairly well for now.

So it's the quiet life for me. Plently of rest. As little stress as I can manage (I have teenagers in the house, so that doesn't always work!) A really good diet (oooohhhhh--I want a some sugar so badly!) with as many fruits and veggies and good foods as I can stand in a day.

I'm trying to both avoid shingles and an RA flare.  My RA is somewhat active now, but I'm getting by with topical pain relievers (lidoderm patches, ketaprofen cream), prayer and some stronger pain relief when I need it. But even this is a double-edged sword, as stronger pain relievers have started giving me rebound headaches, and I have to limit them in order for them to be useful.

My family is letting me sleep in every morning rather than navigating the morning crazies--and I am grateful for those two awesome teenagers who are old enough and independent enough to get themselves off to school and do their own laundry (and who sweetly kiss me goodbye before they leave).

I am trying to embrace the quiet rather than let it wear me down. When my children were small, my middle sister said I had the loudest house she's ever heard (and she has four kids)! I love the hustle and bustle of my kids and their friends coming and going.

But right now I'm praying for healing in my immune system.  I'm accepting God's sweet presence here with me.  It's almost spring outside. I don't know what this one will bring--it has been a difficult year, and if my body does not cooperate, I could hear more apologies from my doctors. I see an infectious disease specialist next week, so I'll find out if there are new ideas there.

Just a couple of weeks ago this was in one of my devotional books--Jesus Calling, Enjoying Peace in His Presence, by Sarah Young. From February 15:

Thank Me for the conditions that are requiring you to be still. Do not spoil these quiet hours by wishing them away, waiting impatiently to be active again.  Some of the greatest works in My kingdom have been done from sick beds and prison cells. Instead of resenting the limitations of a weakend body, search for My way in the midst of these very circumstances. Limitations can be liberating when your strongest desire is living close to Me.

And so I am waiting quietly, mostly peacefully. Walking, painfully, that narrow line.  I know some of you are walking it with me. I am praying for you.


Monday, February 13, 2012

The End of My Girl's Trip--New Zealand and Australia

I promised I'd be back with the rest of my oldest daughter's semester abroad, and though it's taken me a while, here it is! January must be the most difficult month of the year to keep up a blog--I notice many of my blogging friends taking breaks also. I'd rather cozy up to the fire with a book, fold laundry (really?), just about anything else than sit down with my computer and write! But I want to wind up telling you all about her trip to the Pacific Rim, so here goes:

After her wonderful time in Japan, the group moved on to New Zealand. She says now that though Japan was one of her favorite parts because of the home stay, she really loved New Zealand and Australia.  She was surrounded by so much beauty there, and it was so good to hear English spoken again.

In NZ they began their time with a few days in a Marae, sleeping on the floor and experiencing life as the original peoples of New Zealand would have.

From there, they moved on to a family's home on Waiheke Island, New Zealand.  Eating gluten- and dairy free in NZ was relatively easy. The mom where they stayed first kept her spoiled with gluten-free pancakes each morning--

And she had no problem finding cafes and restaurants with gf offerings!

GF Pasta on Waiheke Island

GF Cappacino Muffin
But she was most excited about the pizza! A few years ago we read that Dominoes had gluten-free pizza in New Zealand and Australia, and she couldn't wait to try it. Sure enough, as soon as she could, she ordered a Dominoes gf, cheese-free pizza. And ate the whole thing. Not just once, but over and over again. Here's the first one: (And I know, only someone who is pizza-deprived would really understand how excited she was at this point in the trip!)

Her first pizza in months!

Notice the Gluten-Free sticker on the mid-right of the box
In Australia, it rained much of the time she was there, which delayed and changed many of the group's plans. But they continued on in spite of the rain.

In the harbor near the Sydney Opera House

On the beach, but not swimming because of the rain!

Seeing a kangaroo at the zoo!

And eating a kangaroo burger for Thanksgiving Dinner.

She easily found gluten-free/dairy free food,

A cafe near her youth hostel in Sydney.

while she explored the beautiful countryside.

Blue Mountains

I think it may have been easier for her there than it is here at home. My sweet girl has always been a teensy thing, and in the earlier posts I told you how she lost weight in China but began to gain in Japan. By the time she came home, she had gained over 20 (needed) pounds! Never in my wildest dreams did I hope that she would gain weight on this trip, but she did--thanks to the great care of the wonderful people in other countries. And, I think, because it is, in fact, probably easier to eat gluten free in New Zealand and Australia where people are more health conscious, and there are more options.

She finished up her trip with a couple of days in Hawaii before coming home just in time to help get ready for Christmas. Finally she got some time on the beach in the sun!

On the beach on Hawaii

I'll end, again, with my girl's own words from her statement of learning about the semester. I am so proud of her! She is so glad she went. She felt really well the whole time she was gone. Can travel to difficult places be done on a restricted diet? It sure can! She learned a lot and so did we. And she's already talking about going back.

 Looking back over the semester, I do not even begin to know where to start. Do I start in Beijing, the logical place, where it all began? In Japan, where I fell in love with the people? In New Zealand, where I was surrounded by some of God’s most glorious creation? Or in Australia, where I was surrounded by the familiar and unfamiliar simultaneously?

In each place, I struggled to find God there, and in each place, there He was, right there with me.

Also in this series China, At Last!  My Traveler. . .An Update  More from Travelin' Girl! Japan