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.

Sherry

Christmas Review

Christmas has come and gone. I took a nice little break from blogging and thinking about anything RA or health related during the holidays and concentrated on my family.

Natsumi, our sweet Japanese friend, spent a few days with us before she went home to celebrate her special birthday! We love having her with us for the holidays--this was her second year to help us decorate our tree.  I love looking at my traditions and beliefs through the eyes of another culture.

We mostly relaxed at home and enjoyed each other. With older kids, their activities and work kept things moving, but we managed to play games and see movies and drink home-made hot chocolate and snuggle by the fireplace.  Just having everyone together meant more this year after my daughter's semester abroad.

We visited my parents for a few days, where it seemed everyone was sick! My mother, a wonderful cook who has embraced gluten-free cooking for her many gluten-intolerant children and grandchildren, cooked up a Christmas feast anyway--along with some help from my sister. Here are some of their creations (Yes, you should be envious. My mom cooks mostly without recipes, by touch and taste. I did not inherit this talent.)  There was also gf dressing, gravy, about six other pies and fruitcake, candy, etc.  A completely gluten-free weekend. Delicious!

GF Coconut Cream Pie

GF Stromboli
Gluten-Free Pantry's French Bread Mix
Filled with Pizza Toppings and cheese

Cherrybrook Kitchen Cookies

When Christmas break began, I was still very weak and not breathing well. Most of my lung tests were normal, and by Christmas day I was starting to breath more normally, too. The official diagnosis, as is stands now, is methotrexate lung, which is a form of interstitial hypersensitivity pneumonitis. A little like coal miner's lung--but it usually gets better when the offending substance is withdrawn.  I'll do another post on what I've learned about it later. I still have some days when breathing is more difficult, but most days are good. Though I've had asthma all my life, I have never experienced anything like this before. I am so grateful to be able to breath!

I am looking forward to and hoping for a quieter 2012. Better breathing. No more shingles. RA under control.

Happy New Year to you!

Catching Up--A Bumpy Month of Thanksgiving

It's been a bumpy month or so.

The shingles came back. But I didn't catch them in time  to stop them with a higher dose of anti-viral meds--because I couldn't breathe.

I still don't know why. Two episodes of severe shortness of breath that worsened with any activity (even brushing my teeth), each lasting about four days, and coming fairly soon after I'd taken my methotrexate injection for that week. And now it seems to be gone. I haven't gotten all of the test results yet--but the immediate results were that my lungs and heart looked fine. The first thought was that I had a pulmonary embolism, but that was quickly ruled out. Between the shingles and not being able to breathe, I was left so weak I could hardly walk around my house, hardly sit at my keyboard. I overdid it once or twice and set myself back. The fatigue and weakness from the shingles virus has been terrible.

I am now, finally, beginning to recover. I rode my exercise bike 10 minutes this morning and put a load of laundry in without being completely wiped out. I feel like I'm on my way back up!

A second-opinion rheumatologist visit, trying to find some other options to deal with my shingles vs. RA drugs difficulty gave me very little new information except to confirm that, in fact, I do have RA.

Due to the shingles and breathing problems, I am off RA meds except for plaquenil and 5 or 6 mgs of prednisone and celebrex. I'm going to see how long I can last on that. For those unfamiliar with RA, that could be helpful, or it could be like throwing a tablespoon of water on a bonfire. We'll see.

My gp has been wonderful. I am so grateful for a doctor who is available, who will listen and go to bat for me. In a system where this is increasingly rare, I realize what a blessing I have.

My husband has worried and folded laundry and taken time from work to listen to doctors tell me what they don't know, again.

And this. No matter how I feel, I cook for my family. But not this month. Not much. Both my kids got a bit of gluten from a restaurant where we picked up food one evening when I didn't cook. Both were affected, but my son is so much more sensitive--he missed three days of school. Friends swooped in and filled my freezer with meals--cooked in my house, with my recipes and my pots and pans to avoid the risk of any contamination.

One gracious friend drove me to appointments and waited when my husband couldn't.

In this month of Thanksgiving, I am grateful for many things. My sweet, sweet husband. My children--who just kept going when mom didn't. My family--those phone calls can make all the difference in the world! And I am grateful for my little Bible study group of women; the ones I've prayed with and relied on and couldn't do without.

From one of them, this reassurance, when I felt like it was all getting to be too much. (Hopefully she won't kill me for quoting her!)

(I) still see my sweet, active, giving, energetic friend every time I look into your eyes past the fatigue and pain - even on a good day.

I pray so often for a treatment plan that will allow you to function and ease the exhaustion.

Hang in there - I will walk this path alongside you, you can count on that.

Happy Thanksgiving

Hope you are blessed as I am

Sherry