Re: Steroids & weight gain, such a Lovely subject

[Guest guest]

Yes, prednisone is evil yet wonderful. Since people are sharing, I will

share, too. I was already overweight when I got blasted with Stills. I

remember laying in that hospiital bed with none of my organs working

properly being in so much pain. I was on several meds, including 100mg

prednisone and remember thinking this is what it feels like to be dying (and

I was) but the docs didn't let that happen. I had endured pain before,

terrible pain, but NOTHING like that! It took FOREVER to come off the

prednisone, but I did. There is a picture of my hubby, my daughter and

myself at a college function for my daughter several months later. I look at

that picture every now and then. The first time I saw that picture I thought

how terrible I looked. It was me, but I was so fat, the fat round face so

common of steroid use. But I soon came to love that picture because I was in

it and I was smiling. I was there! It didn't matter that I was fatter (well,

it did, but it didn't). Today, I am sitting on the couch in a drug induced

haze from Lortab and muscle relaxers...YUCK! But, hey...yesterday I could

not walk on my own. I was in agony. I have not had to be on steroids for

about 2 years now. I promised myself I would make the most of the good times

and TRY not to get too down about the bad times. In short, prednisone sucks,

but it can save your life...it did mine, along with great medical care and

some other meds.

April

Sent from my Verizon Wireless Phone

Steroids & weight gain, such a " Lovely " subject "

I was a power lifter in excellent shape when I got sick. I'm only 5'7 " ,

but I was a rock solid 232lbs when I first got whacked. Withing a month of

the coming and going of the symptoms I was down to 212, which is only 4 lbs

more than I weighed @ 19 when I came out of Boot Camp @ Ft. Benning, Ga.

Even though those numbers seem like I was heavy prior to Stills I wasn't.

My neck was 22 1/4 " , my chest was 52 " and my waist was 35 " . I looked like a

walking wedge, and I liked it.

About 6 weeks after the symptoms first started coming and going, they

came and never left. I was slammed to bed for the majority of the first few

months of being ill and they had me on Prednisone 60mg/day. Well, needless

to say that within 2 months I was well over 260. I still am on a

LONG...SSSSLLLLOOOWWW taper with the steroids (currently @ 2mg/day) after

being on them for 9 years to date and needless to say I despise looking at

myself in the mirror. I currently fluctuate between 280-290. Gone are all

of the muscle stretch marks. Gone is the massive chest. My legs are still

huge and strong as hell, but my back is so weak that I wind up hurting

myself as I still have very good strength.

Recently my Dr's are starting to steer me towards Gastric

Bypass surgery, and I'm all for it...I just wish they'd get it done

already. I don't care that I can't lift anymore nor do I care that I will

never look like I used to build wise. I do however want to lose at least 75

pounds, maybe more depending on how much muscle I have lost over the years.

I used to crack up at the height weight charts that said someone my height

should weigh 140-160, and that partially drove me to blow those numbers out

of the water. I'll never forget the look on my Drill Sgt's face when he

asked me to take my shirt off when I laughed at his quote that I'd leave

boot camp at no more than 150....... His jaw dropped.....and he never

bothered to weigh me again. I figure anywhere from 205 on down would be

great for me even though my RD thinks I should weigh 160. I showed him pics

and everything but he still thinks I will see 160. I really wish I had a

ton of money to put on that as I haven't been anywhere near 160 since I was

a Freshman in H.S. when I was 13/14.

later, Kirk

> **

>

>

> Hey ,

>

> unfortunately, while I was on the Prednisone I continued to go up 2 pounds

> each month. BUT I have to say, if I had tried I might have been able to

> cut back here and there to save some calories. That could have maybe

> off-set some of the gain.

> Tappering off the Prednisone for me, the gang here may remember, was an

> extremely delicate process for me. I literally could only budge down 1 mg

> per WEEK! I was (don't quote me!) I think on 25mg for the longest time,

> and

> it took me SO long to get off. At first I was more aggressive and tried to

> go down 5 mg a week, that was a nightmare! So we had to go ALL THE WAY

> back to 25 and start again, 1 mg at a time. And then 2 or 3 times I got as

> far as 13 or 12 and then I'd flare so badly I'd have to go up to 20 and

> then

> try again! it was a really long process for me. And none of the weight

> even started to come off until I was off the Prednisone for about a month

> or

> more. It could have even been a few months. I remember feeling pretty

> sad that the weight wasn't moving, but I was off the meds and I didn't

> want

> to push my body by starving it or by starting to exercise because I didn't

> want to jeopardize getting off the meds.

>

> It seemed that once I was sort of accepting of it, and appreciating that I

> was feeling well enough to not need the Prednisone, and that was really

> the

> thing to focus on, and I stopped beating myself up about the weight, then

> I would only weigh myself ONCE A MONTH! and at the same time within the

> month (after my cycle) so that I wouldn't have bloat, then I finally saw

> each

> month 2 pounds gone! It feels so good to look in the mirror and recognize

> the face looking back at me!!! I was so round in the face I just felt

> strange to look in the mirror! (I think I avoided it as much as possible!)

>

> But hang in there. Let the medicine and the rest do what it can do for

> you, and just keep it in the back of your mind that this is all temporary!

> Hope this helps

> hugs,

> Jo

>

>

> In a message dated 3/9/2012 9:39:16 P.M. Eastern Daylight Time,

> ginabomp@... writes:

>

> I so badly want to take off the weight though, I put on 80 lbs in 3 years.

> I was put on Abilify in 2009 and the doctor believes it could have

> contributed.

>

>

[Guest guest]

Yes, prednisone is evil yet wonderful. Since people are sharing, I will

share, too. I was already overweight when I got blasted with Stills. I

remember laying in that hospiital bed with none of my organs working

properly being in so much pain. I was on several meds, including 100mg

prednisone and remember thinking this is what it feels like to be dying (and

I was) but the docs didn't let that happen. I had endured pain before,

terrible pain, but NOTHING like that! It took FOREVER to come off the

prednisone, but I did. There is a picture of my hubby, my daughter and

myself at a college function for my daughter several months later. I look at

that picture every now and then. The first time I saw that picture I thought

how terrible I looked. It was me, but I was so fat, the fat round face so

common of steroid use. But I soon came to love that picture because I was in

it and I was smiling. I was there! It didn't matter that I was fatter (well,

it did, but it didn't). Today, I am sitting on the couch in a drug induced

haze from Lortab and muscle relaxers...YUCK! But, hey...yesterday I could

not walk on my own. I was in agony. I have not had to be on steroids for

about 2 years now. I promised myself I would make the most of the good times

and TRY not to get too down about the bad times. In short, prednisone sucks,

but it can save your life...it did mine, along with great medical care and

some other meds.

April

Sent from my Verizon Wireless Phone

Steroids & weight gain, such a " Lovely " subject "

I was a power lifter in excellent shape when I got sick. I'm only 5'7 " ,

but I was a rock solid 232lbs when I first got whacked. Withing a month of

the coming and going of the symptoms I was down to 212, which is only 4 lbs

more than I weighed @ 19 when I came out of Boot Camp @ Ft. Benning, Ga.

Even though those numbers seem like I was heavy prior to Stills I wasn't.

My neck was 22 1/4 " , my chest was 52 " and my waist was 35 " . I looked like a

walking wedge, and I liked it.

About 6 weeks after the symptoms first started coming and going, they

came and never left. I was slammed to bed for the majority of the first few

months of being ill and they had me on Prednisone 60mg/day. Well, needless

to say that within 2 months I was well over 260. I still am on a

LONG...SSSSLLLLOOOWWW taper with the steroids (currently @ 2mg/day) after

being on them for 9 years to date and needless to say I despise looking at

myself in the mirror. I currently fluctuate between 280-290. Gone are all

of the muscle stretch marks. Gone is the massive chest. My legs are still

huge and strong as hell, but my back is so weak that I wind up hurting

myself as I still have very good strength.

Recently my Dr's are starting to steer me towards Gastric

Bypass surgery, and I'm all for it...I just wish they'd get it done

already. I don't care that I can't lift anymore nor do I care that I will

never look like I used to build wise. I do however want to lose at least 75

pounds, maybe more depending on how much muscle I have lost over the years.

I used to crack up at the height weight charts that said someone my height

should weigh 140-160, and that partially drove me to blow those numbers out

of the water. I'll never forget the look on my Drill Sgt's face when he

asked me to take my shirt off when I laughed at his quote that I'd leave

boot camp at no more than 150....... His jaw dropped.....and he never

bothered to weigh me again. I figure anywhere from 205 on down would be

great for me even though my RD thinks I should weigh 160. I showed him pics

and everything but he still thinks I will see 160. I really wish I had a

ton of money to put on that as I haven't been anywhere near 160 since I was

a Freshman in H.S. when I was 13/14.

later, Kirk

> **

>

>

> Hey ,

>

> unfortunately, while I was on the Prednisone I continued to go up 2 pounds

> each month. BUT I have to say, if I had tried I might have been able to

> cut back here and there to save some calories. That could have maybe

> off-set some of the gain.

> Tappering off the Prednisone for me, the gang here may remember, was an

> extremely delicate process for me. I literally could only budge down 1 mg

> per WEEK! I was (don't quote me!) I think on 25mg for the longest time,

> and

> it took me SO long to get off. At first I was more aggressive and tried to

> go down 5 mg a week, that was a nightmare! So we had to go ALL THE WAY

> back to 25 and start again, 1 mg at a time. And then 2 or 3 times I got as

> far as 13 or 12 and then I'd flare so badly I'd have to go up to 20 and

> then

> try again! it was a really long process for me. And none of the weight

> even started to come off until I was off the Prednisone for about a month

> or

> more. It could have even been a few months. I remember feeling pretty

> sad that the weight wasn't moving, but I was off the meds and I didn't

> want

> to push my body by starving it or by starting to exercise because I didn't

> want to jeopardize getting off the meds.

>

> It seemed that once I was sort of accepting of it, and appreciating that I

> was feeling well enough to not need the Prednisone, and that was really

> the

> thing to focus on, and I stopped beating myself up about the weight, then

> I would only weigh myself ONCE A MONTH! and at the same time within the

> month (after my cycle) so that I wouldn't have bloat, then I finally saw

> each

> month 2 pounds gone! It feels so good to look in the mirror and recognize

> the face looking back at me!!! I was so round in the face I just felt

> strange to look in the mirror! (I think I avoided it as much as possible!)

>

> But hang in there. Let the medicine and the rest do what it can do for

> you, and just keep it in the back of your mind that this is all temporary!

> Hope this helps

> hugs,

> Jo

>

>

> In a message dated 3/9/2012 9:39:16 P.M. Eastern Daylight Time,

> ginabomp@... writes:

>

> I so badly want to take off the weight though, I put on 80 lbs in 3 years.

> I was put on Abilify in 2009 and the doctor believes it could have

> contributed.

>

>

[Guest guest]

Hello Kirk,

Thanks so much for sharing your story. We are all in this together. Weight loss

is certainly going to help each of us feel a lot better about ourselves, a lot

better physically, and be beneficial health wise. Your story of the memories you

have of your life in such good shape are to be cherished forever. I look at

parts of my life like that, as memories that I’m just glad I had. Now onward

and forward. Eating

right, is so hard to do without incentive. Congratulations on getting down to

the 2mg prednisone a day. That’s not a lot at all. Since exercise is pretty

much out of the question for most of us with no energy, have you considered pool

water therapy. Or just being in the pool walking around? I’ve done pool

therapy, and the antigravity affects are incentive to take off the weight. In

the pool I don’t feel the weight holding me down. Of course it makes it harder

to pace and not get out of the pool dragging and sore. But with discipline you

can limit yourself and build up endurance again. I believe in you and I have to

learn to believe in myself. I’ve thought about gastric bypass. My gosh going

through surgery that can always have complications seems so extreme. I am

desperate to loose the weight, but know that if I can just use that discipline

again, that I can do it and skip the extra burden of surgery on my body. I’m

186 and 5’1†female, 54 years old. A young 54 because I was in the gym

pumping and retained a lot of that into my older years, however this is a new

realm for me to be at this weight when I’ve always been a petite, firm lady of

108 lbs. So, back to memories. I wanted to eat right, I wanted to work out, I

could do both. I’m trying to go off hydrocortisone, or at least lower the dose

from 30mg per day. I take away 5 mg every other day or so and find this to be

very affecting, but keep with it. Some days 25mg only is just fine, but some

days I must go back up to the 30mg and that’s the way it is. I’ve been thin

on steroid hormones before, so I know it’s me and need take responsibility. I

need incentive, like I’m already there, so I’m going to rely on my memories,

and now with your story, I’m going to use the memories of your life as well

for inspiration. What’s wrong with a piece of chicken and a veggie for dinner

with no snacking? Why do I feel like I have to throw in ice cream, and a bagel.

I don’t!!!! So little by little I plan to replace a good meal and try to do

away with snacking and see if I can get the scale to budge. If not, I think

I’m borderline gastric bypass myself. I have ’s disease, so it will

be difficult to have surgery done, as well as a host of other illnesses. Sorry

for rambling, but we are all in this together, so just remember cyberlink

support is as real as any other form of communication these days. We are here

for each other!!!!

Loving thoughts of power!!!

From: Kirk Bonanny

Sent: Wednesday, March 14, 2012 7:31 AM

To: Stillsdisease

Subject: Steroids & weight gain, such a " Lovely " subject "

I was a power lifter in excellent shape when I got sick. I'm only 5'7 " ,

but I was a rock solid 232lbs when I first got whacked. Withing a month of

the coming and going of the symptoms I was down to 212, which is only 4 lbs

more than I weighed @ 19 when I came out of Boot Camp @ Ft. Benning, Ga.

Even though those numbers seem like I was heavy prior to Stills I wasn't.

My neck was 22 1/4 " , my chest was 52 " and my waist was 35 " . I looked like a

walking wedge, and I liked it.

About 6 weeks after the symptoms first started coming and going, they

came and never left. I was slammed to bed for the majority of the first few

months of being ill and they had me on Prednisone 60mg/day. Well, needless

to say that within 2 months I was well over 260. I still am on a

LONG...SSSSLLLLOOOWWW taper with the steroids (currently @ 2mg/day) after

being on them for 9 years to date and needless to say I despise looking at

myself in the mirror. I currently fluctuate between 280-290. Gone are all

of the muscle stretch marks. Gone is the massive chest. My legs are still

huge and strong as hell, but my back is so weak that I wind up hurting

myself as I still have very good strength.

Recently my Dr's are starting to steer me towards Gastric

Bypass surgery, and I'm all for it...I just wish they'd get it done

already. I don't care that I can't lift anymore nor do I care that I will

never look like I used to build wise. I do however want to lose at least 75

pounds, maybe more depending on how much muscle I have lost over the years.

I used to crack up at the height weight charts that said someone my height

should weigh 140-160, and that partially drove me to blow those numbers out

of the water. I'll never forget the look on my Drill Sgt's face when he

asked me to take my shirt off when I laughed at his quote that I'd leave

boot camp at no more than 150....... His jaw dropped.....and he never

bothered to weigh me again. I figure anywhere from 205 on down would be

great for me even though my RD thinks I should weigh 160. I showed him pics

and everything but he still thinks I will see 160. I really wish I had a

ton of money to put on that as I haven't been anywhere near 160 since I was

a Freshman in H.S. when I was 13/14.

later, Kirk

> **

>

>

> Hey ,

>

> unfortunately, while I was on the Prednisone I continued to go up 2 pounds

> each month. BUT I have to say, if I had tried I might have been able to

> cut back here and there to save some calories. That could have maybe

> off-set some of the gain.

> Tappering off the Prednisone for me, the gang here may remember, was an

> extremely delicate process for me. I literally could only budge down 1 mg

> per WEEK! I was (don't quote me!) I think on 25mg for the longest time,

> and

> it took me SO long to get off. At first I was more aggressive and tried to

> go down 5 mg a week, that was a nightmare! So we had to go ALL THE WAY

> back to 25 and start again, 1 mg at a time. And then 2 or 3 times I got as

> far as 13 or 12 and then I'd flare so badly I'd have to go up to 20 and

> then

> try again! it was a really long process for me. And none of the weight

> even started to come off until I was off the Prednisone for about a month

> or

> more. It could have even been a few months. I remember feeling pretty

> sad that the weight wasn't moving, but I was off the meds and I didn't

> want

> to push my body by starving it or by starting to exercise because I didn't

> want to jeopardize getting off the meds.

>

> It seemed that once I was sort of accepting of it, and appreciating that I

> was feeling well enough to not need the Prednisone, and that was really

> the

> thing to focus on, and I stopped beating myself up about the weight, then

> I would only weigh myself ONCE A MONTH! and at the same time within the

> month (after my cycle) so that I wouldn't have bloat, then I finally saw

> each

> month 2 pounds gone! It feels so good to look in the mirror and recognize

> the face looking back at me!!! I was so round in the face I just felt

> strange to look in the mirror! (I think I avoided it as much as possible!)

>

> But hang in there. Let the medicine and the rest do what it can do for

> you, and just keep it in the back of your mind that this is all temporary!

> Hope this helps

> hugs,

> Jo

>

>

> In a message dated 3/9/2012 9:39:16 P.M. Eastern Daylight Time,

> mailto:ginabomp%40cox.net writes:

>

> I so badly want to take off the weight though, I put on 80 lbs in 3 years.

> I was put on Abilify in 2009 and the doctor believes it could have

> contributed.

>

>

[Guest guest]

Hello Kirk,

Thanks so much for sharing your story. We are all in this together. Weight loss

is certainly going to help each of us feel a lot better about ourselves, a lot

better physically, and be beneficial health wise. Your story of the memories you

have of your life in such good shape are to be cherished forever. I look at

parts of my life like that, as memories that I’m just glad I had. Now onward

and forward. Eating

right, is so hard to do without incentive. Congratulations on getting down to

the 2mg prednisone a day. That’s not a lot at all. Since exercise is pretty

much out of the question for most of us with no energy, have you considered pool

water therapy. Or just being in the pool walking around? I’ve done pool

therapy, and the antigravity affects are incentive to take off the weight. In

the pool I don’t feel the weight holding me down. Of course it makes it harder

to pace and not get out of the pool dragging and sore. But with discipline you

can limit yourself and build up endurance again. I believe in you and I have to

learn to believe in myself. I’ve thought about gastric bypass. My gosh going

through surgery that can always have complications seems so extreme. I am

desperate to loose the weight, but know that if I can just use that discipline

again, that I can do it and skip the extra burden of surgery on my body. I’m

186 and 5’1†female, 54 years old. A young 54 because I was in the gym

pumping and retained a lot of that into my older years, however this is a new

realm for me to be at this weight when I’ve always been a petite, firm lady of

108 lbs. So, back to memories. I wanted to eat right, I wanted to work out, I

could do both. I’m trying to go off hydrocortisone, or at least lower the dose

from 30mg per day. I take away 5 mg every other day or so and find this to be

very affecting, but keep with it. Some days 25mg only is just fine, but some

days I must go back up to the 30mg and that’s the way it is. I’ve been thin

on steroid hormones before, so I know it’s me and need take responsibility. I

need incentive, like I’m already there, so I’m going to rely on my memories,

and now with your story, I’m going to use the memories of your life as well

for inspiration. What’s wrong with a piece of chicken and a veggie for dinner

with no snacking? Why do I feel like I have to throw in ice cream, and a bagel.

I don’t!!!! So little by little I plan to replace a good meal and try to do

away with snacking and see if I can get the scale to budge. If not, I think

I’m borderline gastric bypass myself. I have ’s disease, so it will

be difficult to have surgery done, as well as a host of other illnesses. Sorry

for rambling, but we are all in this together, so just remember cyberlink

support is as real as any other form of communication these days. We are here

for each other!!!!

Loving thoughts of power!!!

From: Kirk Bonanny

Sent: Wednesday, March 14, 2012 7:31 AM

To: Stillsdisease

Subject: Steroids & weight gain, such a " Lovely " subject "

I was a power lifter in excellent shape when I got sick. I'm only 5'7 " ,

but I was a rock solid 232lbs when I first got whacked. Withing a month of

the coming and going of the symptoms I was down to 212, which is only 4 lbs

more than I weighed @ 19 when I came out of Boot Camp @ Ft. Benning, Ga.

Even though those numbers seem like I was heavy prior to Stills I wasn't.

My neck was 22 1/4 " , my chest was 52 " and my waist was 35 " . I looked like a

walking wedge, and I liked it.

About 6 weeks after the symptoms first started coming and going, they

came and never left. I was slammed to bed for the majority of the first few

months of being ill and they had me on Prednisone 60mg/day. Well, needless

to say that within 2 months I was well over 260. I still am on a

LONG...SSSSLLLLOOOWWW taper with the steroids (currently @ 2mg/day) after

being on them for 9 years to date and needless to say I despise looking at

myself in the mirror. I currently fluctuate between 280-290. Gone are all

of the muscle stretch marks. Gone is the massive chest. My legs are still

huge and strong as hell, but my back is so weak that I wind up hurting

myself as I still have very good strength.

Recently my Dr's are starting to steer me towards Gastric

Bypass surgery, and I'm all for it...I just wish they'd get it done

already. I don't care that I can't lift anymore nor do I care that I will

never look like I used to build wise. I do however want to lose at least 75

pounds, maybe more depending on how much muscle I have lost over the years.

I used to crack up at the height weight charts that said someone my height

should weigh 140-160, and that partially drove me to blow those numbers out

of the water. I'll never forget the look on my Drill Sgt's face when he

asked me to take my shirt off when I laughed at his quote that I'd leave

boot camp at no more than 150....... His jaw dropped.....and he never

bothered to weigh me again. I figure anywhere from 205 on down would be

great for me even though my RD thinks I should weigh 160. I showed him pics

and everything but he still thinks I will see 160. I really wish I had a

ton of money to put on that as I haven't been anywhere near 160 since I was

a Freshman in H.S. when I was 13/14.

later, Kirk

> **

>

>

> Hey ,

>

> unfortunately, while I was on the Prednisone I continued to go up 2 pounds

> each month. BUT I have to say, if I had tried I might have been able to

> cut back here and there to save some calories. That could have maybe

> off-set some of the gain.

> Tappering off the Prednisone for me, the gang here may remember, was an

> extremely delicate process for me. I literally could only budge down 1 mg

> per WEEK! I was (don't quote me!) I think on 25mg for the longest time,

> and

> it took me SO long to get off. At first I was more aggressive and tried to

> go down 5 mg a week, that was a nightmare! So we had to go ALL THE WAY

> back to 25 and start again, 1 mg at a time. And then 2 or 3 times I got as

> far as 13 or 12 and then I'd flare so badly I'd have to go up to 20 and

> then

> try again! it was a really long process for me. And none of the weight

> even started to come off until I was off the Prednisone for about a month

> or

> more. It could have even been a few months. I remember feeling pretty

> sad that the weight wasn't moving, but I was off the meds and I didn't

> want

> to push my body by starving it or by starting to exercise because I didn't

> want to jeopardize getting off the meds.

>

> It seemed that once I was sort of accepting of it, and appreciating that I

> was feeling well enough to not need the Prednisone, and that was really

> the

> thing to focus on, and I stopped beating myself up about the weight, then

> I would only weigh myself ONCE A MONTH! and at the same time within the

> month (after my cycle) so that I wouldn't have bloat, then I finally saw

> each

> month 2 pounds gone! It feels so good to look in the mirror and recognize

> the face looking back at me!!! I was so round in the face I just felt

> strange to look in the mirror! (I think I avoided it as much as possible!)

>

> But hang in there. Let the medicine and the rest do what it can do for

> you, and just keep it in the back of your mind that this is all temporary!

> Hope this helps

> hugs,

> Jo

>

>

> In a message dated 3/9/2012 9:39:16 P.M. Eastern Daylight Time,

> mailto:ginabomp%40cox.net writes:

>

> I so badly want to take off the weight though, I put on 80 lbs in 3 years.

> I was put on Abilify in 2009 and the doctor believes it could have

> contributed.

>

>

[Guest guest]

I wish the will power alone would do it, but the vast majority of the

extra weight on me came in the first 2-3 years, when I was pretty much

bedridden 90% of the time. I try to walk as much as possible, and have been

coaching junior football and wrestling for years now. I still do tons of

fishing in the warm weather, and when I fish it is not the sit on the

bank in a chair type of ordeal...I used to walk 8-10 miles a day on the

river fishing. I don't go to those extremes anymore, and my body can no

longer handle the 8 hour BASS Tournaments anymore, but the way I fish is

pretty demanding.

As far as pools go...I would....if only there was a heated one near

me!!!! Anytime I get in water that isn't really warm (I go through this

every single time a cold front goes through) I wind up with chills, a

blinding headache and horrendous joint pain. Once I get that 1st chill, I

have to get into bed ASAP or else I am literally screwed. I can't remember

how many times I've wound up lying on the ground in the rain and such

shaking like hell from chills. It can take me anywhere from a few hours to

a few days to recover from each of these events occurring.

On top of lifting, I used to run 4-5 miles 3-5x per week. I wrestled for

7 years, played football from the age of 7 through high school ( and loads

of sand-lot style until I had my 1st Son. I joined the Pa National Guard

when I was 18 and stayed until I was 25. I also averaged 60-70 hours a week

at work as I (along with my Father) own/operate an Auto Repair garage since

1987 at our current location. To know I have to sell what I worked so hard

to establish is killing me, but I can no longer be relied upon to be able

to work. Don't get me wrong....if I feel good enough I still love digging

into a car or truck, but I am way too limited to function on a daily basis

doing it any longer. Besides, if it wasn't for the morphine pump implant

into my spine I wouldn't even be able to walk, so I know my back can't take

any abuse at all anymore.

Oh well, have a good one! Kirk.

PS...I too have overcome the " hump " where I literally HATE myself, but I

still don't like the way I look. I do however remember BEGGING GOD to take

me, and that went n for the first 3-4 years. At least I got past that part,

as I had no idea how miserable I was until I stepped back a bit and looked

over my life at that point. That was a dark, dark time.

Adios!

> **

>

>

> Hello Kirk,

>

> Thanks so much for sharing your story. We are all in this together. Weight

> loss is certainly going to help each of us feel a lot better about

> ourselves, a lot better physically, and be beneficial health wise. Your

> story of the memories you have of your life in such good shape are to be

> cherished forever. I look at parts of my life like that, as memories that

> I’m just glad I had. Now onward and forward. Eating

> right, is so hard to do without incentive. Congratulations on getting down

> to the 2mg prednisone a day. That’s not a lot at all. Since exercise is

> pretty much out of the question for most of us with no energy, have you

> considered pool water therapy. Or just being in the pool walking around?

> I’ve done pool therapy, and the antigravity affects are incentive to take

> off the weight. In the pool I don’t feel the weight holding me down. Of

> course it makes it harder to pace and not get out of the pool dragging and

> sore. But with discipline you can limit yourself and build up endurance

> again. I believe in you and I have to learn to believe in myself. I’ve

> thought about gastric bypass. My gosh going through surgery that can always

> have complications seems so extreme. I am desperate to loose the weight,

> but know that if I can just use that discipline again, that I can do it and

> skip the extra burden of surgery on my body. I’m 186 and 5’1†female, 54

> years old. A young 54 because I was in the gym pumping and retained a lot

> of that into my older years, however this is a new realm for me to be at

> this weight when I’ve always been a petite, firm lady of 108 lbs. So, back

> to memories. I wanted to eat right, I wanted to work out, I could do both.

> I’m trying to go off hydrocortisone, or at least lower the dose from 30mg

> per day. I take away 5 mg every other day or so and find this to be very

> affecting, but keep with it. Some days 25mg only is just fine, but some

> days I must go back up to the 30mg and that’s the way it is. I’ve been

thin

> on steroid hormones before, so I know it’s me and need take responsibility.

> I need incentive, like I’m already there, so I’m going to rely on my

> memories, and now with your story, I’m going to use the memories of your

> life as well for inspiration. What’s wrong with a piece of chicken and a

> veggie for dinner with no snacking? Why do I feel like I have to throw in

> ice cream, and a bagel. I don’t!!!! So little by little I plan to replace a

> good meal and try to do away with snacking and see if I can get the scale

> to budge. If not, I think I’m borderline gastric bypass myself. I have

> ’s disease, so it will be difficult to have surgery done, as well as

> a host of other illnesses. Sorry for rambling, but we are all in this

> together, so just remember cyberlink support is as real as any other form

> of communication these days. We are here for each other!!!!

>

> Loving thoughts of power!!!

>

>

> From: Kirk Bonanny

> Sent: Wednesday, March 14, 2012 7:31 AM

> To: Stillsdisease

> Subject: Steroids & weight gain, such a " Lovely " subject "

>

> I was a power lifter in excellent shape when I got sick. I'm only 5'7 " ,

> but I was a rock solid 232lbs when I first got whacked. Withing a month of

> the coming and going of the symptoms I was down to 212, which is only 4 lbs

> more than I weighed @ 19 when I came out of Boot Camp @ Ft. Benning, Ga.

> Even though those numbers seem like I was heavy prior to Stills I wasn't.

> My neck was 22 1/4 " , my chest was 52 " and my waist was 35 " . I looked like a

> walking wedge, and I liked it.

> About 6 weeks after the symptoms first started coming and going, they

> came and never left. I was slammed to bed for the majority of the first few

> months of being ill and they had me on Prednisone 60mg/day. Well, needless

> to say that within 2 months I was well over 260. I still am on a

> LONG...SSSSLLLLOOOWWW taper with the steroids (currently @ 2mg/day) after

> being on them for 9 years to date and needless to say I despise looking at

> myself in the mirror. I currently fluctuate between 280-290. Gone are all

> of the muscle stretch marks. Gone is the massive chest. My legs are still

> huge and strong as hell, but my back is so weak that I wind up hurting

> myself as I still have very good strength.

> Recently my Dr's are starting to steer me towards Gastric

> Bypass surgery, and I'm all for it...I just wish they'd get it done

> already. I don't care that I can't lift anymore nor do I care that I will

> never look like I used to build wise. I do however want to lose at least 75

> pounds, maybe more depending on how much muscle I have lost over the years.

> I used to crack up at the height weight charts that said someone my height

> should weigh 140-160, and that partially drove me to blow those numbers out

> of the water. I'll never forget the look on my Drill Sgt's face when he

> asked me to take my shirt off when I laughed at his quote that I'd leave

> boot camp at no more than 150....... His jaw dropped.....and he never

> bothered to weigh me again. I figure anywhere from 205 on down would be

> great for me even though my RD thinks I should weigh 160. I showed him pics

> and everything but he still thinks I will see 160. I really wish I had a

> ton of money to put on that as I haven't been anywhere near 160 since I was

> a Freshman in H.S. when I was 13/14.

> later, Kirk

>

>

>

> > **

>

> >

> >

> > Hey ,

> >

> > unfortunately, while I was on the Prednisone I continued to go up 2

> pounds

> > each month. BUT I have to say, if I had tried I might have been able to

> > cut back here and there to save some calories. That could have maybe

> > off-set some of the gain.

> > Tappering off the Prednisone for me, the gang here may remember, was an

> > extremely delicate process for me. I literally could only budge down 1 mg

> > per WEEK! I was (don't quote me!) I think on 25mg for the longest time,

> > and

> > it took me SO long to get off. At first I was more aggressive and tried

> to

> > go down 5 mg a week, that was a nightmare! So we had to go ALL THE WAY

> > back to 25 and start again, 1 mg at a time. And then 2 or 3 times I got

> as

> > far as 13 or 12 and then I'd flare so badly I'd have to go up to 20 and

> > then

> > try again! it was a really long process for me. And none of the weight

> > even started to come off until I was off the Prednisone for about a month

> > or

> > more. It could have even been a few months. I remember feeling pretty

> > sad that the weight wasn't moving, but I was off the meds and I didn't

> > want

> > to push my body by starving it or by starting to exercise because I

> didn't

> > want to jeopardize getting off the meds.

> >

> > It seemed that once I was sort of accepting of it, and appreciating that

> I

> > was feeling well enough to not need the Prednisone, and that was really

> > the

> > thing to focus on, and I stopped beating myself up about the weight, then

> > I would only weigh myself ONCE A MONTH! and at the same time within the

> > month (after my cycle) so that I wouldn't have bloat, then I finally saw

> > each

> > month 2 pounds gone! It feels so good to look in the mirror and recognize

> > the face looking back at me!!! I was so round in the face I just felt

> > strange to look in the mirror! (I think I avoided it as much as

> possible!)

> >

> > But hang in there. Let the medicine and the rest do what it can do for

> > you, and just keep it in the back of your mind that this is all

> temporary!

> > Hope this helps

> > hugs,

> > Jo

> >

> >

> > In a message dated 3/9/2012 9:39:16 P.M. Eastern Daylight Time,

> > mailto:ginabomp%40cox.net writes:

> >

> > I so badly want to take off the weight though, I put on 80 lbs in 3

> years.

> > I was put on Abilify in 2009 and the doctor believes it could have

> > contributed.

> >

> >

[Guest guest]

I wish it was willpower alone also. But the truth is that it took this long to

put the weight on, as you said partially for myself was countless days turning

into weeks of nothing but laying in bed. Any body would loose it’s endurance

from that. You brought up and gave me another reminder of a loss I have to go

through with my new life and that is fishing. Bass fishing, trout is ok for the

fresh water lakes, but I also love to fish in the ocean. I had an Alaska trip

and fished in the streams for salmon, and also went off in a board several miles

off shore for Halibut fishing. It was the most memorable experience of my life.

I was prone to infections and happen to get a bladder infection that started on

the plane ride up on a Saturday. We flew in to Kokiak that night. Nothing is

open in town on a Sunday, and barely the E.R. But these bladder infections come

on so fast and furious that I went to the E.R. at their tiny medical center

Sunday am first day we were there and got them to prescribe antibiotic and pain

meds. Luckily the grocery store had a pharmacy the only one in town, and they

could fill part of my order enough to get started on meds. I was only there a

week and nothing was going to affect my getting to go fishing in Alaska. So, we

fished a bit off shore that night Sunday, and found out we’d get to go out on

a friend’s boat Monday to fish for Halibut. There was me and three men. I had

to go under into the small galley and use a tiny port a potty and with bladder

infections you typically get urgency and frequency, but I had been on the

antibiotic 24 hours and was so ready and wrapped up in fishing that I only had

to make a couple 3 trips downstairs. It being colder than you know what, it was

tough wrestling with clothes to go potty, but I wore jeans and long underwear,

two piece so it made it easier. I caught the first fish, weighing in at 75 lbs.

The limit was 2. I also caught the largest fish weighing in at 146 lbs. If

everyone hadn’t caught their limit, we let each other fish. I was tiny then

5’1’ AND 108, but strong from lifting at the gym, but no woman that size is

capable of reeling in the 146 lb fish. I got half way, and had to have one of

the men take it up to the surface of the water. To heck with nets to bring those

into the boat, they shot them in the head with a gun. They were barely

manageable for 2 men, and it took 3 to bring that one on. At least as we were

out we cleaned most of the fish, which was allowed up there so we didn’t have

to come home with so much. got them sizeable anyway if you know what I mean.

There was still a lot of cleaning to be done and fileting at home on giant

sheets of plywood and work benches. Took a couple of guys 5 hours to clean what

we totaled as our limit 8 fish, and weight wise we had 700 lbs. We took home as

much as two hug coolers packed on dry ice would let us. We also caught our limit

salmon fishing for Silver that were running at the time. And brought tons of

that home too. It’s all memories now. There is no way I could sustain a trip

like that in my life time again. I want to get info better shape and at least

maybe shoot for some kind of fishing somewhere warm. I hold onto my memories and

reflect on them as my way of coping with my life and what is has become. Sorry

you get the chills so easy, is that because of the Still’s fever that makes it

worse?

I go to a pool that is heated to 93 degrees and no less than that. Some people

complain, but a good therapy pool should be at least that or you’re in the

wrong place. I strut around in the pool with the little old ladies with

arthritis and do my own thing and of course they look at me and say “you

don’t look sick’. Duh again. I will probably start again in Spring doing

some water therapy. Cutting out foods that put on weight and replacing meals

with fresh fish, meats, chicken and some veggies. Desert will be popcorn. I

found that if I eat as much popcorn as I want between meals, that is satisfies

that hunger for anything else and it’s low calorie with lots of fiber.

I don’t want to do this alone. I hope my new found support group will be there

to help me get through. Sharing stories especially about fishing is inspiring.

If I work hard enough, perhaps one day I’ll fish again. You did have to go and

bring that up. I’m going to find my pictures and put them on line of me with

my halibut and salmon.

Glad you are over the hump. I too begged God and still occasionally do to take

me, I’m ready if living life this is the pain that it is, I’d rather be with

him. Since he has other plans, then I guess I’m stuck trying to live by his

will for me and why he has allowed these illnesses into my life. You see my

daughter is the one with Still’s, she is 29 years old. I am on this support

group mostly for her, my ailments area ’s, fibromyalgia, Asthma, back

and neck problems and other diagnosis. No official diagnosis of Still’s

however the diseases behave similarly.

Thanks for letting me take a trip back to memory lane. I need to keep my hopes

up that there is a real life out there some where and this is just temporary

being down

Thanks Kirk for listening and everyone else who can related for listening also,

you are a great bunch of people who deserve the best and we shall have it one

day,

Take care,

.

From: Kirk Bonanny

Sent: Thursday, March 15, 2012 12:50 AM

To: Stillsdisease

Subject: Re: Steroids & weight gain, such a " Lovely " subject "

I wish the will power alone would do it, but the vast majority of the

extra weight on me came in the first 2-3 years, when I was pretty much

bedridden 90% of the time. I try to walk as much as possible, and have been

coaching junior football and wrestling for years now. I still do tons of

fishing in the warm weather, and when I fish it is not the sit on the

bank in a chair type of ordeal...I used to walk 8-10 miles a day on the

river fishing. I don't go to those extremes anymore, and my body can no

longer handle the 8 hour BASS Tournaments anymore, but the way I fish is

pretty demanding.

As far as pools go...I would....if only there was a heated one near

me!!!! Anytime I get in water that isn't really warm (I go through this

every single time a cold front goes through) I wind up with chills, a

blinding headache and horrendous joint pain. Once I get that 1st chill, I

have to get into bed ASAP or else I am literally screwed. I can't remember

how many times I've wound up lying on the ground in the rain and such

shaking like hell from chills. It can take me anywhere from a few hours to

a few days to recover from each of these events occurring.

On top of lifting, I used to run 4-5 miles 3-5x per week. I wrestled for

7 years, played football from the age of 7 through high school ( and loads

of sand-lot style until I had my 1st Son. I joined the Pa National Guard

when I was 18 and stayed until I was 25. I also averaged 60-70 hours a week

at work as I (along with my Father) own/operate an Auto Repair garage since

1987 at our current location. To know I have to sell what I worked so hard

to establish is killing me, but I can no longer be relied upon to be able

to work. Don't get me wrong....if I feel good enough I still love digging

into a car or truck, but I am way too limited to function on a daily basis

doing it any longer. Besides, if it wasn't for the morphine pump implant

into my spine I wouldn't even be able to walk, so I know my back can't take

any abuse at all anymore.

Oh well, have a good one! Kirk.

PS...I too have overcome the " hump " where I literally HATE myself, but I

still don't like the way I look. I do however remember BEGGING GOD to take

me, and that went n for the first 3-4 years. At least I got past that part,

as I had no idea how miserable I was until I stepped back a bit and looked

over my life at that point. That was a dark, dark time.

Adios!

On 14 March 2012 15:18, <mailto:ginabomp%40cox.net> wrote:

> **

>

>

> Hello Kirk,

>

> Thanks so much for sharing your story. We are all in this together. Weight

> loss is certainly going to help each of us feel a lot better about

> ourselves, a lot better physically, and be beneficial health wise. Your

> story of the memories you have of your life in such good shape are to be

> cherished forever. I look at parts of my life like that, as memories that

> I’m just glad I had. Now onward and forward. Eating

> right, is so hard to do without incentive. Congratulations on getting down

> to the 2mg prednisone a day. That’s not a lot at all. Since exercise is

> pretty much out of the question for most of us with no energy, have you

> considered pool water therapy. Or just being in the pool walking around?

> I’ve done pool therapy, and the antigravity affects are incentive to take

> off the weight. In the pool I don’t feel the weight holding me down. Of

> course it makes it harder to pace and not get out of the pool dragging and

> sore. But with discipline you can limit yourself and build up endurance

> again. I believe in you and I have to learn to believe in myself. I’ve

> thought about gastric bypass. My gosh going through surgery that can always

> have complications seems so extreme. I am desperate to loose the weight,

> but know that if I can just use that discipline again, that I can do it and

> skip the extra burden of surgery on my body. I’m 186 and 5’1†female, 54

> years old. A young 54 because I was in the gym pumping and retained a lot

> of that into my older years, however this is a new realm for me to be at

> this weight when I’ve always been a petite, firm lady of 108 lbs. So, back

> to memories. I wanted to eat right, I wanted to work out, I could do both.

> I’m trying to go off hydrocortisone, or at least lower the dose from 30mg

> per day. I take away 5 mg every other day or so and find this to be very

> affecting, but keep with it. Some days 25mg only is just fine, but some

> days I must go back up to the 30mg and that’s the way it is. I’ve been

thin

> on steroid hormones before, so I know it’s me and need take responsibility.

> I need incentive, like I’m already there, so I’m going to rely on my

> memories, and now with your story, I’m going to use the memories of your

> life as well for inspiration. What’s wrong with a piece of chicken and a

> veggie for dinner with no snacking? Why do I feel like I have to throw in

> ice cream, and a bagel. I don’t!!!! So little by little I plan to replace a

> good meal and try to do away with snacking and see if I can get the scale

> to budge. If not, I think I’m borderline gastric bypass myself. I have

> ’s disease, so it will be difficult to have surgery done, as well as

> a host of other illnesses. Sorry for rambling, but we are all in this

> together, so just remember cyberlink support is as real as any other form

> of communication these days. We are here for each other!!!!

>

> Loving thoughts of power!!!

>

>

> From: Kirk Bonanny

> Sent: Wednesday, March 14, 2012 7:31 AM

> To: mailto:Stillsdisease%40yahoogroups.com

> Subject: Steroids & weight gain, such a " Lovely " subject "

>

> I was a power lifter in excellent shape when I got sick. I'm only 5'7 " ,

> but I was a rock solid 232lbs when I first got whacked. Withing a month of

> the coming and going of the symptoms I was down to 212, which is only 4 lbs

> more than I weighed @ 19 when I came out of Boot Camp @ Ft. Benning, Ga.

> Even though those numbers seem like I was heavy prior to Stills I wasn't.

> My neck was 22 1/4 " , my chest was 52 " and my waist was 35 " . I looked like a

> walking wedge, and I liked it.

> About 6 weeks after the symptoms first started coming and going, they

> came and never left. I was slammed to bed for the majority of the first few

> months of being ill and they had me on Prednisone 60mg/day. Well, needless

> to say that within 2 months I was well over 260. I still am on a

> LONG...SSSSLLLLOOOWWW taper with the steroids (currently @ 2mg/day) after

> being on them for 9 years to date and needless to say I despise looking at

> myself in the mirror. I currently fluctuate between 280-290. Gone are all

> of the muscle stretch marks. Gone is the massive chest. My legs are still

> huge and strong as hell, but my back is so weak that I wind up hurting

> myself as I still have very good strength.

> Recently my Dr's are starting to steer me towards Gastric

> Bypass surgery, and I'm all for it...I just wish they'd get it done

> already. I don't care that I can't lift anymore nor do I care that I will

> never look like I used to build wise. I do however want to lose at least 75

> pounds, maybe more depending on how much muscle I have lost over the years.

> I used to crack up at the height weight charts that said someone my height

> should weigh 140-160, and that partially drove me to blow those numbers out

> of the water. I'll never forget the look on my Drill Sgt's face when he

> asked me to take my shirt off when I laughed at his quote that I'd leave

> boot camp at no more than 150....... His jaw dropped.....and he never

> bothered to weigh me again. I figure anywhere from 205 on down would be

> great for me even though my RD thinks I should weigh 160. I showed him pics

> and everything but he still thinks I will see 160. I really wish I had a

> ton of money to put on that as I haven't been anywhere near 160 since I was

> a Freshman in H.S. when I was 13/14.

> later, Kirk

>

>

>

> > **

>

> >

> >

> > Hey ,

> >

> > unfortunately, while I was on the Prednisone I continued to go up 2

> pounds

> > each month. BUT I have to say, if I had tried I might have been able to

> > cut back here and there to save some calories. That could have maybe

> > off-set some of the gain.

> > Tappering off the Prednisone for me, the gang here may remember, was an

> > extremely delicate process for me. I literally could only budge down 1 mg

> > per WEEK! I was (don't quote me!) I think on 25mg for the longest time,

> > and

> > it took me SO long to get off. At first I was more aggressive and tried

> to

> > go down 5 mg a week, that was a nightmare! So we had to go ALL THE WAY

> > back to 25 and start again, 1 mg at a time. And then 2 or 3 times I got

> as

> > far as 13 or 12 and then I'd flare so badly I'd have to go up to 20 and

> > then

> > try again! it was a really long process for me. And none of the weight

> > even started to come off until I was off the Prednisone for about a month

> > or

> > more. It could have even been a few months. I remember feeling pretty

> > sad that the weight wasn't moving, but I was off the meds and I didn't

> > want

> > to push my body by starving it or by starting to exercise because I

> didn't

> > want to jeopardize getting off the meds.

> >

> > It seemed that once I was sort of accepting of it, and appreciating that

> I

> > was feeling well enough to not need the Prednisone, and that was really

> > the

> > thing to focus on, and I stopped beating myself up about the weight, then

> > I would only weigh myself ONCE A MONTH! and at the same time within the

> > month (after my cycle) so that I wouldn't have bloat, then I finally saw

> > each

> > month 2 pounds gone! It feels so good to look in the mirror and recognize

> > the face looking back at me!!! I was so round in the face I just felt

> > strange to look in the mirror! (I think I avoided it as much as

> possible!)

> >

> > But hang in there. Let the medicine and the rest do what it can do for

> > you, and just keep it in the back of your mind that this is all

> temporary!

> > Hope this helps

> > hugs,

> > Jo

> >

> >

> > In a message dated 3/9/2012 9:39:16 P.M. Eastern Daylight Time,

> > mailto:ginabomp%40cox.net writes:

> >

> > I so badly want to take off the weight though, I put on 80 lbs in 3

> years.

> > I was put on Abilify in 2009 and the doctor believes it could have

> > contributed.

> >

> >

[Guest guest]

Hi,

I have had the same problem. Without the prednisone I have high fevers, with the

prednisone I gain weight. Needless to say I am off prednisone because I really

can't afford to gain anymore weight. I went from 150 to over 200lbs in 8 years.

Every time I try and workout I get another fever and have to stop for a while

and when I finally start again the same thing happens. By the time I get home

from work I am so tired all I can do is just go to bed.

I need to find something that works. I cannot stand buying clothes or even

getting dressed or looking in a mirror. I wish I could get rid of this weight.

If anyone finds something that works for you, please share.

Thank you SO much for listening.

Angie

Sent from my iPhone

> I wish it was willpower alone also. But the truth is that it took this long to

put the weight on, as you said partially for myself was countless days turning

into weeks of nothing but laying in bed. Any body would loose it’s endurance

from that. You brought up and gave me another reminder of a loss I have to go

through with my new life and that is fishing. Bass fishing, trout is ok for the

fresh water lakes, but I also love to fish in the ocean. I had an Alaska trip

and fished in the streams for salmon, and also went off in a board several miles

off shore for Halibut fishing. It was the most memorable experience of my life.

I was prone to infections and happen to get a bladder infection that started on

the plane ride up on a Saturday. We flew in to Kokiak that night. Nothing is

open in town on a Sunday, and barely the E.R. But these bladder infections come

on so fast and furious that I went to the E.R. at their tiny medical center

Sunday am first day we were there and got them to prescribe antibiotic and pain

meds. Luckily the grocery store had a pharmacy the only one in town, and they

could fill part of my order enough to get started on meds. I was only there a

week and nothing was going to affect my getting to go fishing in Alaska. So, we

fished a bit off shore that night Sunday, and found out we’d get to go out on

a friend’s boat Monday to fish for Halibut. There was me and three men. I had

to go under into the small galley and use a tiny port a potty and with bladder

infections you typically get urgency and frequency, but I had been on the

antibiotic 24 hours and was so ready and wrapped up in fishing that I only had

to make a couple 3 trips downstairs. It being colder than you know what, it was

tough wrestling with clothes to go potty, but I wore jeans and long underwear,

two piece so it made it easier. I caught the first fish, weighing in at 75 lbs.

The limit was 2. I also caught the largest fish weighing in at 146 lbs. If

everyone hadn’t caught on. us.

>

>

>