It's Been a Tough Week

[Guest guest]

Sorry I haven't posted as often but this has been a tough week for

me. And sorry this is long, but wanted to get you all caught up.

Tuesday was a day I hope I don't repeat too often but suspect that's

a bit of wishful thinking. I experienced I believe, what is referred

to by some of you as a Prednisone " Bounce " or rebound. As I reported

here recently, the plan was to start weaning off of the Prednisone.

I had been on 20 MG a day for several weeks with good results and

for the last 3 weeks had been taking my weekly dose of Methotrexate.

Sunday was the first day on 15MG of Pred. Starting about Monday I

notices some stiffness returning. It was getting harder again to

climb the stairs at home and my hips and knees were beginning to hurt

as well, along with a few other pairs of lesser weight bearing joints.

Tuesday, I had a very early scheduled telephone conference with

Shanghai so needed to get up and get into the office early for the

call. Actually slept fairly well. Upon waking, I realized that

getting out of bed was going to be a significant physical challenge.

My hips and particularly my right hip, was in a total flare. Not

only was it flaring but it was sending pain into my leg and causing

my back to spasm. After several attempts at rolling and maneuvering

I finally managed to get out of bed in considerable pain but getting

upright was another story. Being the unrelenting trooper I am and

still in denial and not really having gotten to the point of

embracing the " spoon theory " I did manage with significant pain to

get showered and dressed.

As you could imagine, I was pretty much a mess. I made it into work,

careful not to exceed any speed limits and took up my place in the

employee parking lot. Just the act of getting in and out of my truck

should have qualified as an Olympic event. I quietly thanked the

Lord for giving my son the foresight to buy me a rolling briefcase,

because otherwise there would have been no way I would have been able

to carry it into the office. At this point, while my hip was the

significant issue of the moment, my shoulders, knees, elbows and

wrists decided to join the party. It was enough to bring this grown

man near tears.

I somehow managed to make the 1/4 mile walk to my desk utilizing the

elevator that at one point, as you all know, I considered a symbol of

my defeat over this disease, but had more recently become my good

friend, and made it to the safe haven of my desk, newly equipped with

an ergonomic chair provided by the leader of our facilities group who

I brought into my close fold of those who know about Bob's " problem " .

Upon the arrival of the other local conference call participants, I

had to endure the various " you look like hell " looks and comments but

we managed to get the conference call underway. It was pretty much a

blur. Hopefully I didn't commit to a deliverable that I shouldn't

have committed to but all I was concerned about was getting through

the call and making a call to the Rheumy's office in a desperate plea

for help.

My Rheumy doesn't work on Tuesdays I discovered, but her efficient

assistant took my information and I know she heard the desperation in

my voice. She'd probably become pretty adept at identifying the real

sounds of pain from calls for help like mine, and she promised to be

in touch with the Rheumy and be back to me as soon as she could.

At the insistence of my leader, I was instructed to go home and given

a pat on the back for being a hero for coming in for the call.

Uncharacteristic of other situations like this, he insisted that I be

escorted to my car to insure I make it there safely and even offered

to have someone drive me home. Being too " proud " and feeling that I

could safely navigate my way home I accepted the escort to the car

but declined the ride. The escort did need to lift my briefcase into

the back seat of my truck though since there was no way it was going

to get up there on it's own and certainly beyond my current capacity.

Shortly after getting home and with the help of my older son ,

who was between jobs and saddled with his own handicap, I made it up

to the safety of my bedroom. I must have been a sight. Lying in bed

with my laptop resting upon my stomach, comfortably heating my hips

(Dells get HOT!) and my BlackBerry perched on the bed next to me.

This concept that my company calls " working from home " was beginning

to appeal to me.

My BlackBerry signaled that my Rheumy's office was on the phone.

First instruction. No more weaning of Prednisone. Damn! Go back to

the 20 MG and take the additional 5 MG immediately. " We'll talk

about next steps, including your dosage of Methotrexate on the 20th,

the date of my next appointment. " I had suffered what I think some

of you call a Prednisone Bounce. It's another one of those

diagnostic qualifiers that says your RA responds well to steroids but

if you do not have sufficient DMARD in your system to pick up the

slack, trying to step down from the Prednisone, even conservatively,

could result in an near immediate return of your symptoms in all

their glory, and maybe even worse than before.

Being the dutiful patient, I took the 5 MG of additional Prednisone

and prayed for relief. As God as my witness, within 4 hours of

taking the additional Prednisone I started feeling improvement in my

symptoms. The cane I asked my son to retrieve from the garage that I

had once come to rely upon for what was previously thought to be a

stress fracture in my foot which turned out to be more than likely an

early undiagnosed flare, was not going to be needed today.

I already had a Physical Therapy session schedule for that afternoon,

so I called to let them know what was going on. I told them that

while stretching and or easy strength training was out of the

question, possibly we could devote the session to the moist heat

treatments they had given me once before. They agreed that was a

good plan. Not only would they do that, but they would include

ultrasound treatments as well. This was beginning to sound like a

something worth making the trip to the PT office for.

Dealing with this disease comes with many surprises and turns in the

road. Above all, I guess I need to learn to be flexible and not rely

so much on my BlackBerry schedule. I also need to listen to you guys

and follow your advice.

You can't CONTROL this disease. You can only manage it. I guess

what happened on Tuesday was just another step in the process of

finding out what is going to work for me in my " New Normal " . Maybe

this will help my Rheumy decide what to try next in the form of

treatments. I know I can't stay forever on 20MG of Prednisone but it

probably tells us something with regard to the level of my need for

the supporting DMARD drug and whether or not Biologic drugs are in my

future.

I try to take each day as a God given gift and a new adventure to see

what he has in store for me. I truly believe that God doesn't give

me more than I can handle and I've been fortunate to have a good

solid relationship with my creator. He ALWAYS answers my prayers. It

may not be the answer I was hoping for or expecting but he gives me

what I need, and only when I need it, and not before I need it. This

brings to mind that famous quote by the profit Mick Jagger, " You

don't always get what your want, but of you try some time, you just

might find, you get what you need. " I wonder if Mick realized he was

talking about prayer.

Hope everyone has a great pain free day.

I may not post here every day now, but I always read your posts.

Sometimes, I'm just too tired to think of a response. I think you

all probably understand.

Thanks again for being there. Clora - you always make me smile and

Doreen, Tawny, a, Melynda, Dodge, Shirley, and all of you,

your advice and experience is what I need to hear. Again, thanks.

Bob