"Ain't no place for sissies"...

I know I've mentioned this before, but one of my mother's favorite adages was a quote from Bette Davis {of all people}: Old age ain't no place for sissies.

Old age or not, living with chronic illness "ain't no place for sissies".  My mother knew that, very well. She lived with RA for decades longer than I have. What I need to remember is that the course auto-immune diseases take is as unique and individual as those of us who are afflicted.

I wish mother were still alive so I could tell her how I now understand why she grimaced if one of the children accidentally hit her hand and when we lifted her in and out of her wheelchair. She seldom complained, but I remember a season when dad had to dress her, and how much she loved the lounge chair he bought her years later - the one with vibrations and heat controls where I knew I could find her every morning.

Negligent to maintain this RA journal, many of the details between my last post and this one have escaped me. That's not necessarily a bad thing. I don't like to dwell on the details. Acknowledge them and then move on is what I think.

So where am I today? Better than I was in July, not as good as a year ago. For now, I seem to be on a "one step forward and two steps back" track. Today is typical. I've been up since 4 am with excruciating pain in both wrists. A situation now complicated by a return of elevated liver enzymes that limits me to only one prescription pain medication, even though XS Tylenol or aspirin works just as well, if not better. 

I'm still on leflunonomide (Avara) for now, but I don't think it's effective. As I continue to wean off prednisone (I'm currently alternating 5mg and 7.5mg daily), my cough, facial rash, extreme fatigue and severe joint pains are returning. 

I had a large infected cyst on my neck left open to drain for a week before having it removed entirely. The surgeon was concerned about my ability to heal while on prednisone, but she was pleased with how well I not only healed, but avoided infection. So was I.

I'm scheduled for a repeat C-T scan of my lungs, pulmonary function tests, and a sonogram of my thyroid in early December, as well as regularly scheduled blood work, followed by an appointment with the pulmonologist and then my rheumatologist to see where we go from here. I might try to see my primary physician in November just to keep a closer eye on my liver enzymes. I'm not convinced that tylenol is the culprit.

After the first of the year and we evaluate where I am with the RA, I hope to see the orthopedic surgeon. I need to know if the biggest problem with my knees is RA or OA. If it's OA, then I'll probably need surgery if I'm otherwise strong enough. 

If you are one of the handful of friends who follow my RA journey, please know that I don't dwell on any of this. Life's too short to be self-absorbed. There's too much loving and living to do. Let's just link our hearts and arms as we journey together toward home. 

Poco a poco...

Once upon a time, I was a registered nurse and the nurse administrator for a hemodialysis center in a rural community. Because of my past experience in hemodialysis and administration in another community, I'd been recruited by the medical director to hire and train staff and get the dialysis center off the ground. From renovating a building near the hospital to the first day we began out-patient treatments, it was a slow and tedious process. "Poco a poco. Little by little," the medical director often commented during those early organizational days when nothing seemed to happen fast enough.

It's the perfect description for the progress I'm making these days, as well...but it's progress. My liver enzymes are back to normal and two weeks ago I started a new medication - leflunonomide. So far, so good. When I increased the dosage from 1/2 to 1 tablet daily after ten days as prescribed, I was also supposed to decrease the prednisone back down to 3 5-mg tablets - but I don't think I'm ready to do that yet. Soon.

Until this morning, Louis was still getting me up at 4:00am and the routine has been the same, except I've noticed over the past week that it has been less and less painful, and I've been able to stop using the walker earlier and earlier each day. I went to church this past Sunday, and yesterday morning I didn't need the walker, at all. This morning, I only needed it for a short time, when I got up by myself at 4:30 after Louis had already gone to work.  

Progress. Poco a poco - but progress.

Starting over...

The past couple of weeks, with only slight variations, my days have looked something like this:

4:00 - 4:30 am: the first most difficult challenge - Louis helps me get out of bed so I can make my way with a walker to a chair in the living room. It's a slow and painful process. My feet, ankles, knees, hands, wrists, shoulders and sometimes elbows and hips are swollen stiff and inflammed, making it beyond difficult to bear weight on any of my joints. Prednisone promises relief, but it must be taken with food and the ulcer medication must be taken an hour before eating. So I take the ulcer medication and something for pain, and Louis helps me arrange heating pads around the most painful joints, a pillow under my left knee (which I cannot straighten) and other comfort measures before he leaves for work.

5:30 am: the second most difficult challenge - I gather up enough courage to get up out of the living room chair by myself and walk (with the walker) to the kitchen to eat a little something and take the rest of my meds, including prednisone. The pain med usually hasn't kicked in yet and it's a miserable task. Sliding or dragging, rather than walking, is a better description for how I continue to move at that hour.

7:00 am: Though it's still painful, the pain meds have dulled the sharpest edges by now and I need to get up and move. I'll need to use the walker for 1-3 more hours, but the thought of standing and moving no longer makes me want to cry.

By 7:30 am, I've been awake more than 3 hours and determined to get dressed. Before RA I would have been content to stay in PJ's all day, if given the opportunity, but it's important to my mental health to get dressed as soon as I can and not look like the invalid I obviously am these days.

Some time mid-morning I'm able to put the walker away for the day, but I'm still not able to move without pain and limping, and most chores and the activities of daily living are obstacles to overcome.

The best time of day is between 2:00 - 7:00 pm, but I have to be careful to not overdo. Monday I had to leave the house for lab work and to run a few errands in Ft. Myers. Emily did most of the shopping while I waited in the car, but I paid severely for what little I did.

Thursday I thought I'd try walking down to the creek with my camera. I'm going stir-crazy here in the house and the creek isn't that far from the house - 150 feet at the most. After I came inside I took a shower. My legs and ankles hurt so bad that I didn't think I could stand long enough to rinse the soap off. I got out of the shower, sat down and cried.

That's when I made the decision to call the rheumatologist this morning and not wait for my appointment on Monday. I'm so glad I did. I doubted my ability to get through the weekend on my present medication regime. The prednisone dosage was increased from 15 to 20mg, and after just one day, I'm already feeling better and more optimistic that my doctors will be able to prescribe a treatment plan that will not damage my liver or lungs.

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!!!

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.

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?

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.

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.

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...