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.



  1. One of your best posts yet. If I were Johnny Cash, I might respond with "You know you're fine...I walk the line (with you)... :)

  2. Oh you poor thing. My daughter had the shingles...get this...just 19 at the time and they can be brutal. It sounds like you won't be able to take alot of the "tradtional" ra meds. Have you thought about maybe seeing a nontraditional doc? These aren't usually covered by insurance though. They guide you on diet, vitamins, and such for different illnesses and stuff. I have always wanted to go to one but they can get to be expensive. Some other bloggers have tried them and are tending toward more of the holistic or natural way of doing things. In your case, it sounds like you don't have much of a choice with the traditional why not try the non traditional? I understand you are already doing a better diet which is great! Just want you to know you are in my prayers and in my thoughts.

  3. Oh no! This doesn't sound good at all. Keep praying and keep appreciating that great family of yours. You have many good things in your life already, but I have a feeling more are on the way (and hopefully involve sugar sometime in the future!).