Re: It's Been a Tough Week

[Guest guest]

Bob,

On a high note, I am glad that you are feeling better. What a bummer

on decreasing the prednisone. Hopefully your rheummy already has a

plan for moving ahead.

You have experienced the reason that all of us took the step and

accepted biologics. When the DMARDS don't get it done and we MUST

keep going well......However this does not mean that MTX won't work.

I think you have been on it about a month or six weeks? It does take

a while to start working and once again, you know how differently we

all react to medications.

Also each of us are unique in what is going on with our RA. I

imagine each of us are at different levels with different joints. I

doubt there would be two exact cases becuase each of us have other

medical problems and medications in the mix.

Your physical therapy appointment sounds wonderful. Moist heat is

the greatest thing to me. I hope it helped tremendously.

Bob, it is great that you have a real relationship with God. I rely

on Him so much. I either heard this or read it, but in a study of

the brain and pain people of faith could handled greater levels of

pain than people that did not have any religous interactions or

bliefs. For myself, I understand how that could be true. I have an

invisible crutch that I lean on for support and I know that I am

crippled without it. Things don't always turn out the way that I

would like for them to, but in hindsight I see that they turned out

better in other ways that I had not even considered before.

My prayers are with you and thanks for all of the support that you

give also.

Shirley

>

> 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

>

[Guest guest]

Thanks so much for your support and prayers. Yes, I'm only on my 3rd

week on the MTX and a low dose at that. I believe my Rheumy takes a

conservative approach on the initial dosage until she gets the first

blood tests back around liver and kidney function. I et that test

next week so she'll have the results when I see her on the 20th. If

all goes well, I suspect she'll up the dose from 7.5 MG (3 pills) to

something more in line with my need to replace the Pred and bring me

comparable relief. I also plan on talking to her then about

switching to injections becuase of my history with GI bleeds. Why

push it if injections reduce the gastric disturbances by bypassing

the stomach. I'm all for that.

I'm hoping I get some relief or at least equal relief with the

DMARDs. I fall into the gap of people who have health insurance but

can't afford the Biologics because of a 30% co-pay. If and when we

get there, I may need to pursue aid from the pharmaceutical plans

some of these companies offer. Just so far, with just the testing

and drugs I've already been on, I've already depleted the healthfund

our company gives us, my $2000 flexible spending account and reached

my individual deductible, all in about 6-8 weeks. Can't wait to see

what 2009 will bring, but I suspect God will provide the answers to

that when I need it.

Thanks again for everything.

Bob

>

> Bob,

> On a high note, I am glad that you are feeling better. What a

bummer

> on decreasing the prednisone. Hopefully your rheummy already has a

> plan for moving ahead.

>

> You have experienced the reason that all of us took the step and

> accepted biologics. When the DMARDS don't get it done and we MUST

> keep going well......However this does not mean that MTX won't

work.

> I think you have been on it about a month or six weeks? It does

take

> a while to start working and once again, you know how differently

we

> all react to medications.

>

> Also each of us are unique in what is going on with our RA. I

> imagine each of us are at different levels with different joints. I

> doubt there would be two exact cases becuase each of us have other

> medical problems and medications in the mix.

>

> Your physical therapy appointment sounds wonderful. Moist heat is

> the greatest thing to me. I hope it helped tremendously.

>

> Bob, it is great that you have a real relationship with God. I rely

> on Him so much. I either heard this or read it, but in a study of

> the brain and pain people of faith could handled greater levels of

> pain than people that did not have any religous interactions or

> bliefs. For myself, I understand how that could be true. I have an

> invisible crutch that I lean on for support and I know that I am

> crippled without it. Things don't always turn out the way that I

> would like for them to, but in hindsight I see that they turned out

> better in other ways that I had not even considered before.

>

> My prayers are with you and thanks for all of the support that you

> give also.

> Shirley

>

>

[Guest guest]

Hi Bob - I'm so sorry to hear you had such a rough day on Tuesday. At

the same time, I am happy to hear that you are finally " accepting "

your disease for what it is. I believe that once we accept our fates

in life, God opens another door for us to walk through. And like you

said, we don't always get what we want, but God will certainly give us

all that we need. Hang in there, my friend. It sounds like you have

had a revelation of sorts this week. God WILL see us through.....Doreen

>

> 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

>

[Guest guest]

Bob and group;

Bob sweetheart.. I say sweetheart as a sister.. I know where you're

comeing from.. I have strugled your steps many times.. THanking the

Lord was a great responce from you.. I do the same when I know that

it was by the grace of God I could make it... I am so sorry you had

such a tuff weeek..

Bob please forgive me for laughing haaaaaaaaaa.. I had to laugh.. I

visioned you lieing on the bed with a lap top on your stomache and

couldnt controll the giggle coming from my lips.. I have placed mnay

things on my tummys.. babies.. pets but never a pc.. ( laptop )

I have prayed that my meds would work also many times.. As I have

post in my last long post that God wants us to do things

scientifically... I theorized this all by myself.. God would show me

so many things to do on my own that where I get these theories from,,

god leading me,,,

And praying for our meds to work haaaaaaaa.. I know I know we need to

pray for cures and healings.. but I want my injection to work so I

said a prayer as my husband gave me my injections... Yes I read where

you prayed for a med to work and I silently said lord yes please let

his meds work..

My injection worked so good... I hate these flares and bounces..

Scary as heck.. I just got a flare this week.. Our group got me

through it... I was asked if the weather changed recently.. It was

changing as I was being asked.. haaaaaaaaaaa... It is chilly out I

guess we can say autumn is here... My flare was due to weather

changel and I needed to calm down.. I did calm down with the help of

our group...

I believe God gave mankind the ability to learn to use his science

well.. I pray for all the doctors to take care of us with the

knowledge he has given them.. I get so tickled with some of the

things people say on here.. I can't wait to get on the pc every

morning.. When mine broke down I thought Oh well God will take care

of it and he surly did... If it be his will..

My daughter brought her friend over to fix my pc and her friend took

it with him cause we had no clear disk so he could load down

something or other on it.. WE didnt know our code to run the pc he

said don't worry I will hack into it.. OMG HAAAAAAAAAA... Its a good

thing he could do that cause we forgot the code.. So sometimes its a

good thing to hack OMG.. Oh my goodness gracious...not our code

the computer code to get on the computer..

He will tell us how much it will cost afterwards.. OMG He fixed her

pc for a couple hundred dollars.. It needed a new hard drive Bob I

have heard little of a hard drive but enough to know it's serious..

Its about the second time he fixed it.. He knows we will have to pay

in about 3 payments.. so he is pretty good to let us do that.. If he

can fix it at all..

Bob I think our bodies are traitors to us.. Imagine ,, ( everyone

imagine) our antibodies attacking the joints.. I guess the doctors

found a way to trick our antibodies.. Some people it works and others

it don't,, I still havent figured that one yet...

I know you had a really hard time to go to work Bob.. I am so sorry

our bodies do this to us.. I am so glad we are in this century to get

the help we need .. THey didnt have injections when my grandmother

had RA.. Humira,, enbrell.. I hope and pray your meds work for you..

THe Humira works great for me.. Your sons sound like wonderull kids

to stick by you and help you..

I hope I cheered you up some.. I read all the post also Bob..

Sometimes I am hurt to much to sit and text so I send a quick hope

you feel better responce to everyone.. I thought I was going to

write a long responce to you before I seen the thanks you sent me.. I

need that sometimes so I know that my posts are not silly..

I was thinking my last post was silly.. cause I tend to put what I

have on my mind at the time.. I like what Doreen wrote on the subject

line at the top. . Clora's testimony.. I don't feel as silly since

she wrote that.. Don't worry about long post.. Our moderator

said that long post are welcome..

I am glad to hear from ya and glad you got through that tuff week.. I

hope and pray there are better weeks ahead for everyone.. I didnt get

to read yesterdays post so I had about 120 post this morning.. I am

down to 60.. I will finish them up today.. I cant miss one post or I

will not understand what some people are talking about.. I am glad

they have provided you with a comfy chair at work.. ,, that is so

kind of your fellow employers..

gentle hugs

Clora

> 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

>

[Guest guest]

Hi Bob,

So sorry your having so much pain. I hope your feeling better now, and

have been working from home. I'm glad you called the rheumy, it sounds

like you have some good doctors.

You take care, and let us know how your feeling, Tawny

>

> 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

>

[Guest guest]

Waht an awful week you just had Bob! Sounds horrible that you has

such a " bounce " like that. Good though that your doctor told you to

stay on the Prednisone at least till you see him. Great that you are

getting nice treatment in your Physical Therapy. Wheneven I get PT I

only get lots of exercises to do. Hope you have a pain free weekend.

soft hugs,

Debbie L

>

> 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

>

[Guest guest]

Clora - A warm gentle hug for you. You always make me smile. I am

feeling better, thanks to going back up on the Pred. and I am dealing

OK with the disappointment and frustration. Doing my best to take

each day at a time as that's all the Lord will give us and in itself

is a blessing.

Yes, I was quite a sight in bed with the laptop. I've since been to P

and had another ultrasound and moist heat treatment. I think I could

get really used to that.

This weekend, I've been pacing my self and trying to recharge my

batteries. I think the fatigue God gave me now is his way of saying

slow down and accept the blessing I have given you.

Have a great day and God Bless.

Bob

>

> Bob and group;

>

> Bob sweetheart.. I say sweetheart as a sister.. I know where you're

> comeing from.. I have strugled your steps many times.. THanking the

> Lord was a great responce from you.. I do the same when I know that

> it was by the grace of God I could make it... I am so sorry you had

> such a tuff weeek..

>

> Bob please forgive me for laughing haaaaaaaaaa.. I had to laugh.. I

> visioned you lieing on the bed with a lap top on your stomache and

> couldnt controll the giggle coming from my lips.. I have placed mnay

> things on my tummys.. babies.. pets but never a pc.. ( laptop )

>

> I have prayed that my meds would work also many times.. As I have

> post in my last long post that God wants us to do things

> scientifically... I theorized this all by myself.. God would show me

> so many things to do on my own that where I get these theories from,,

> god leading me,,,

>

> And praying for our meds to work haaaaaaaa.. I know I know we need to

> pray for cures and healings.. but I want my injection to work so I

> said a prayer as my husband gave me my injections... Yes I read where

> you prayed for a med to work and I silently said lord yes please let

> his meds work..

>

> My injection worked so good... I hate these flares and bounces..

> Scary as heck.. I just got a flare this week.. Our group got me

> through it... I was asked if the weather changed recently.. It was

> changing as I was being asked.. haaaaaaaaaaa... It is chilly out I

> guess we can say autumn is here... My flare was due to weather

> changel and I needed to calm down.. I did calm down with the help of

> our group...

>

> I believe God gave mankind the ability to learn to use his science

> well.. I pray for all the doctors to take care of us with the

> knowledge he has given them.. I get so tickled with some of the

> things people say on here.. I can't wait to get on the pc every

> morning.. When mine broke down I thought Oh well God will take care

> of it and he surly did... If it be his will..

>

> My daughter brought her friend over to fix my pc and her friend took

> it with him cause we had no clear disk so he could load down

> something or other on it.. WE didnt know our code to run the pc he

> said don't worry I will hack into it.. OMG HAAAAAAAAAA... Its a good

> thing he could do that cause we forgot the code.. So sometimes its a

> good thing to hack OMG.. Oh my goodness gracious...not our code

> the computer code to get on the computer..

>

> He will tell us how much it will cost afterwards.. OMG He fixed her

> pc for a couple hundred dollars.. It needed a new hard drive Bob I

> have heard little of a hard drive but enough to know it's serious..

> Its about the second time he fixed it.. He knows we will have to pay

> in about 3 payments.. so he is pretty good to let us do that.. If he

> can fix it at all..

>

> Bob I think our bodies are traitors to us.. Imagine ,, ( everyone

> imagine) our antibodies attacking the joints.. I guess the doctors

> found a way to trick our antibodies.. Some people it works and others

> it don't,, I still havent figured that one yet...

>

> I know you had a really hard time to go to work Bob.. I am so sorry

> our bodies do this to us.. I am so glad we are in this century to get

> the help we need .. THey didnt have injections when my grandmother

> had RA.. Humira,, enbrell.. I hope and pray your meds work for you..

> THe Humira works great for me.. Your sons sound like wonderull kids

> to stick by you and help you..

>

> I hope I cheered you up some.. I read all the post also Bob..

> Sometimes I am hurt to much to sit and text so I send a quick hope

> you feel better responce to everyone.. I thought I was going to

> write a long responce to you before I seen the thanks you sent me.. I

> need that sometimes so I know that my posts are not silly..

>

> I was thinking my last post was silly.. cause I tend to put what I

> have on my mind at the time.. I like what Doreen wrote on the subject

> line at the top. . Clora's testimony.. I don't feel as silly since

> she wrote that.. Don't worry about long post.. Our moderator

> said that long post are welcome..

>

> I am glad to hear from ya and glad you got through that tuff week.. I

> hope and pray there are better weeks ahead for everyone.. I didnt get

> to read yesterdays post so I had about 120 post this morning.. I am

> down to 60.. I will finish them up today.. I cant miss one post or I

> will not understand what some people are talking about.. I am glad

> they have provided you with a comfy chair at work.. ,, that is so

> kind of your fellow employers..

>

> gentle hugs

> Clora

>

>

> > 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

> >

>

[Guest guest]

>

> Hi Bob - I'm so sorry to hear you had such a rough day on Tuesday. At

> the same time, I am happy to hear that you are finally " accepting "

> your disease for what it is. I believe that once we accept our fates

> in life, God opens another door for us to walk through. And like you

> said, we don't always get what we want, but God will certainly give us

> all that we need. Hang in there, my friend. It sounds like you have

> had a revelation of sorts this week. God WILL see us

through.....Doreen

>

Doreen - I think I am almost there. Acceptance is the greatest gift

God can give us. I'm working hard at opening my heart to accept his

gift. Some days it's pretty easy. Others it seems I've lost

everything I had. Fortunately I have the stubborn persistence to not

give up. Today is a new day. God bless.

Bob

[Guest guest]

>

> Waht an awful week you just had Bob! Sounds horrible that you has

> such a " bounce " like that. Good though that your doctor told you to

> stay on the Prednisone at least till you see him. Great that you are

> getting nice treatment in your Physical Therapy. Wheneven I get PT I

> only get lots of exercises to do. Hope you have a pain free weekend.

> soft hugs,

> Debbie L

>

Thanks Debbie - Fortunately the PT folks are very accommodating to my

needs at the time and this week we laid off the exercise and focused

on moist heat treatments and untrasound treatments. Thursday they did

some stretching of my hamstrings and hips which obviously where

tighter than a drum due to the flare earlier in the week.

I'm bless in that because of the length of service I have with my

company I was also able to take off Friday to further recharge and

recover. I told the folks in the office to not expect me to answer my

cell phone or BlackBerry. They'll get over it and I really enjoyed the

extra day.

Thanks for your good wishes and hope the rest of your weekend is pain

free. God bless.

Bob

[Guest guest]

Bob and group;

Thanks Bob,,, sometimes thats all we need is a warm gentle hug from

someone nice like you... I look for the Lords blessing in each

day... I love the ultrasound treatments they make you revived...

Have you had a sleep study also Bob... Sometimes are fatigued has

something to do with sleep apnea.. I just told Dennis about the sleep

study.. Especially if you snore at night... I don't get exhausted

anymore during the day... Sometimes I get a little sleepy if I do I

lie down and take a 15 minute nap... I hope you have better week this

week.. God bless and taken care.

gentle hugs

Clora

> Clora - A warm gentle hug for you. You always make me smile. I am

> feeling better, thanks to going back up on the Pred. and I am

dealing

> OK with the disappointment and frustration. Doing my best to take

> each day at a time as that's all the Lord will give us and in itself

> is a blessing.

> Yes, I was quite a sight in bed with the laptop. I've since been

to P

> and had another ultrasound and moist heat treatment. I think I

could

> get really used to that.

> This weekend, I've been pacing my self and trying to recharge my

> batteries. I think the fatigue God gave me now is his way of saying

> slow down and accept the blessing I have given you.

> Have a great day and God Bless.

> Bob