Saturday, January 22, 2011

So I don't forget...

This post is for me. "Remembering" has never been my gift (!). If I don't write it down, I simply won't remember.

A variety of extra circumstances (lack of sleep, assignment deadline pressures, weather changes) is making it a little difficult for me to evaluate how well I tolerated this first dose of methotrexate. I will try anyway. I'm interested to see if there are patterns that I can tweak to make positive changes in the future.

Except for a little more RA pain, I ended the day feeling very good about how well I tolerated the methotrexate. (The pain is not likely related at all.) Increasing the dose, as ordered, by 50% (from 4 to 6 tablets) next week may produce different results, but I'm very encouraged about how well it's gone so far.

I was exhausted by early evening last night and in bed hours before my normal bedtime, but a busy day Thursday (Precious Life board meeting in the morning, multiple medical appointments in Ft. Meyers and shopping in the afternoon) and lack of sleep that night are likely the culprit.

When I went to bed last night, my right hand, feet and shoulders were hurting and though I slept well for the most part, I woke several times during the night with increasing pain in my knees making it difficult to bend or straighten my legs, so I was mentally prepared for the difficulty I had getting out of bed this morning.

Two hours and three prednisone later, I'm improving, but still  hurting. My biggest frustration with this is in not being able to get outside and walk on this delightfully cool morning. The sunshine keeps teasing me - popping in and out. I fully expect to be outside soon. Lord willing.

I'm sitting on the back porch looking out towards the bird feeders and the pond and my backyard swing. Our home on Pollywog Creek is surrounded by communities of immigrants and farm workers, and for the most part, they are hispanic. Music, loud and joyful, is drifting over from somewhere across the creek. There are drums and guitars, singing and clapping. I listen carefully. I don't recognize the tune or understand the language, but there is a sweetness to the music.

We often hear party music coming from that direction at night, but this is different - and it's mid-morning. Then I hear it. "Hallelujah"  "Hallelujah"

I'm reminded of the chorus lyrics of one of my favorite Kathy Troccoli song...
Oh praise Him all His mighty works
There is no language where you can't be heard
Your song goes out to all the earth
Hallelujah, hallelujah, hallelujah
And I love that Hallelujah is the language of God's people in English and in Spanish.

Hallelujah indeed!!!

Friday, January 21, 2011

A beginning...

Today's the day (technically last night) that I begin treating this disease with methotrexate, rather than treating just the symptoms with prednisone.

I told my friend Joyce earlier this week that I'm truly not worried about any of this. God has given me a steady measure of peace - an assurance of His unending grace and provisions for my needs. As silly as it may seem, the only thing that has produced any anxiety in me has been the possibility of nausea. I don't do nausea well.

From all my research (and the doctor's recommendation), the methotrexate seems to cause less nausea if taken just before bedtime, and that is exactly what I did.

So far, so good. Nothing I can't manage. I have a headache and  feel like I'm in a bit of a fog, but I can feel that way without taking methotrexate.

I don't have much of an appetite, but even that is not a bad thing. The prednisone has kept me in a perpetual state of starving. A day or two without an appetite might be a welcomed balance.

I have nothing to complain about. Truly. I'm writing this from my back porch as painted buntings, red-headed woodpeckers and white-winged dove feast at the feeders under the barren limbs of the sweet-gum trees. Thunder rumbles in the distance and drops of rain fall here and there, bouncing off the roof and the dry mulch around the already blooming azaleas.

Work calls to me from the laundry room and kitchen. Yogurt needs to be spooned into jars and I must focus soon on completing the organizer for our taxes. But for now, this leisure time is a grace gift.

Monday, January 17, 2011

Moving slowly forward...

I've always appreciated the wisdom Steve shares at TheOldRedHat.Com, but this post was exactly what I needed to read today...
It is too easy to get stuck in the gridlock of life. 
The counsel from heaven is to move forward, to move heavenward.
My doctor called earlier with the results of my CAT scan and the news is a mixed bag of uncertainty - one of those gridlocks of life, as Steve put it.

No mass or lymph nodes, but possibly bilateral (meaning both lungs) scarring, atelectasis (fluid where there should be air), and a slowly resolving infiltrate. The consensus is that it is probably fibrosis related to the RA and I should go ahead with the methotrexate in the hopes that it will effectively reduce inflammation and my lungs will improve as a result. If not, more extensive pulmonary studies will be ordered.

The CT scan also inadvertently revealed multiple lesions - possibly small colloidal cysts - in both lobes of my thyroid. I have battled hoarseness off and on for years, but certainly more so in recent months. All my thyroid labs are within normal limits, but a thyroid ultrasound for later in the week has been ordered and I'll probably need an ENT referral.

I'm already scheduled for an echo-cardiogram this Thursday. Who knows when I'll be able to schedule the colonoscopy (routine for those of us with crohns).

Emily and I both have coughs and sore throats. I'll probably wait until the end of the week to determine if I should begin the methotrexate or wait another week. The sore throat just muddies the waters.

Because RA fibrosis and effusions are treated with prednisone, my primary doctor thinks I should probably continue taking three (a total of 15mg) every morning (whether I think I need it for my joints or not) in the hope of reducing overall inflammation and improving my lungs.  I think it is the prednisone that is giving me nightmares, so I'm not too thrilled with that decision.

The one thing I won't do is stay stuck in the gridlock. I'm moving forward. Aren't we all?

Sunday, January 16, 2011

One, two or three...

Today is another three prednisone day.

Maybe I pushed myself too much yesterday. By day's end, I had been on two walks, instead of one - the second time in sandals, which was much easier on my toes and feet. I wasn't as exhausted as I had been the day before. I went to bed at a reasonable time, but I knew the minute I got out of bed that I'd need the maximum dose of prednisone for the day.

I also had more difficulty getting in and out of the car today. The drive to Ft. Myers apparently didn't agree with me.  We went to the early service at church so that Louis could shop at Bass Pro and we could eat out before grocery shopping. At Bass Pro, I opted to wait in the lobby while Louis and Emily shopped, and after lunch I stayed in the car while Louis and Emily did the grocery shopping. I can't ever remember that happening. Grocery shopping is my "territory" - my domain. It's one thing for Louis or Emily to stop at the grocery store by themselves on the way home from work or trips to Ft. Myers. It's another thing altogether for me to allow them to grocery shop without me while I wait in the car.

Now that I have had a nice nap, the prednisone has kicked in and I feel like a different person. It would be great to feel better and be more energetic earlier in the day. I'm just very, very grateful for the prednisone. I can only imagine how I would feel on these "three prednisone days" without access to prednisone at all. Been there, done that. Don't want to do it again.

Saturday, January 15, 2011

Still waiting...

Had the C-T scan of my chest Wednesday morning, but have not heard the results. So I'm still waiting to begin the methotrexate.

I'm doing fine most days with two prednisone in the mornings. My afternoons and evenings are relatively good and the weather has been perfect for spending a couple of hours outdoors each day.

I've had two delightful days - playing with Gavin on Thursday and visiting with a dear friend and having Nick, Kristin, Gavin and Addisyn for dinner last evening, but I was exhausted early and after sleeping nearly 10 hours last night (though fitfully), I knew it would be a 3 prednisone day today as soon as I got out of bed.

I decided to push through the pain and stiffness and go on a short walk. I wanted to see how the penny royal faired the frost and freezes this week, and I hoped that walking would work out the kinks, but I was only able to walk about 1/4 of a mile before the cramps in my toes made it too difficult to continue. Maybe when it warms up a bit I can walk further this afternoon.

I'm heavy-hearted these days for friends and family who are suffering with pain and grief and brokenness that puts my aches and pain in perspective. It is a beautiful day and I praise God for the multitude of good things in my life.

Wednesday, January 12, 2011

Just jumping in...

I know that this is an awkward way to begin. I need to write an introduction, but if I wait until I do so to begin journaling, I'll get too far behind and overwhelmed. I'm just going to jump right in with where I am today, do the next thing, and write an introduction when I have the time and clear-thinking a good introduction requires.

December was a difficult month physically, but spiritually and emotionally it was tender and sweet.  How could it not have been with all the rich fullness of Christmas and family and a brand new granddaughter who is perfect in every way. And though RA is not a diagnosis I welcome, it is a relief to have a name for what has been attacking me. It's awfully difficult to swat flies in the dark.

And how can it be anything but the favor of God  that I have found a kind and patient rheumatologist? When I told him about my mother and her legacy of a "merry heart", a big smile crossed his face. "She was a gift of God to me," I told him, "and I intend to face this disease with the grace and humor she possessed."

"That's good," he said. "That's very good."

And I want y'all to hold me to it. If I start leaning into the pit of "poor me", you have my permission to correct me. Honest.

So where am I today? Certainly grateful for prednisone and voltaren gel - they have dramatically improved the quality of my life over the past couple of weeks. Before the voltaren gel was prescribed I'd been relying on ibuprophen or naprosyn to take the edge off the pain, and not only were they ineffective, my stomach did not approve. Now that I am also on prednisone, I can look forward to several hours a day (usually mid-afternoon after a nap) of increased mobility and much less pain overall.

I would like to sleep better. I wake up frequently during the night, unable to bend or straighten my legs, and I awaken every morning with stiff and painful hands and feet, but nothing compared to the pain and stiffness I experienced before.

I take my meds and eat a little something as soon as I can each morning and try to accomplish a simple chore or two - like making the bed. It is usually a couple of hours after I take the prednisone before I consider taking a walk or tackling other chores. I battle fatigue and brain fog most mornings until after lunch and a nap when the prednisone seems to kick in and I get a second wind - a boost in energy and flexibility that has allowed me to take short walks in the late afternoon.

My current greatest challenge in the morning is the one day a week that I help an elderly disabled widow friend. I help her get a shower, change the sheets on her hospital bed, take her large dog for a short walk and drive her to the beauty shop every 2-3 weeks. We have a wonderful time together, talking, laughing and praying, but I do worry about what would happen now if she fell or if the dog decided to run and pulled hard on the leash. For a few weeks, I had almost as much difficultly getting in and out of the car as she does, but the prednisone has made that much easier. Just yesterday, after the relative ease at which I was able to fold up her walker and lift it into the back of my car, I actually said out loud, "I love prednisone."  

At the same time, I will be anxious to come off the prednisone. It is hopefully just a temporary stopgap measure until I am able to begin more aggressive treatment.

Off to breakfast with my honey...