Aa
Crumbling
It really hit me today, 10 months into TX, cowering on the side of the NYS thruway on my way to my monthly gastro appointment, rear passenger side tire flat as a pancake, just how much of an invalid I've become.
I didn't have a cell phone; it's one of the one of the many things I've forgotten to keep up with; the contract lapsed months ago.
I didn't have the strength to even attempt to change the tire myself. In my pre-TX days, i could have eventually figured it out. it might have taken me all friggin' day but I would have done it.
Steamy Indian summer morning, car parked next to a lush grove of apple trees with plump ripe fruit dangling: I got as far as emptying the trunk to pull out the spare and then started trembling, felt nauseous, couldn't breathe. Raised the trunk and leaned against the rear bumper, hoping I'd spot a good samaritan or a state cop whizzing by. In the back of my mind scenes from my niece's death, 5 years ago, on the side of a Florida interstate, trying to troubleshoot engine problems, mowed down by an out-of-control tractor-trailer . . . I wasn't THERE but I was there . . .
I was in luck. A k-9 unit pulled up, took my info and relayed it to the state troopers but no one showed up.
Joe from PA came by half an hour later and changed the tire in less than 5 minutes, refusing to take the $40 I tried to press on him.
"You've redeemed my faith in human nature," I told him
By this time I was close to passing out; didn't want to drive 60 miles back to my cottage on a spare, got off the next exit and bought a couple of new tires at a local Mavis, drove home, called the gastro telling them why I hadn't shown up, forced myself to go to the local Walmart to buy one of those prepaid phones coz with my luck, when i try to make the trip again tomorrow I'll have a similar incident requiring access to AAA and will once again be stuck.
I'm wiped out. One friggin little crisis and I'm burned, wondering how I'm gonna manage the trip tomorrow. Wondering how I managed to get back home safely today. Wondering if I'll ever again be able to handle such irritating but routine daily crises. . .
Feeling weak, scared, realizing I have next to zero strength left . . .
Very depressed.
Just had to ramble. Thanks.
wyntre
I didn't have a cell phone; it's one of the one of the many things I've forgotten to keep up with; the contract lapsed months ago.
I didn't have the strength to even attempt to change the tire myself. In my pre-TX days, i could have eventually figured it out. it might have taken me all friggin' day but I would have done it.
Steamy Indian summer morning, car parked next to a lush grove of apple trees with plump ripe fruit dangling: I got as far as emptying the trunk to pull out the spare and then started trembling, felt nauseous, couldn't breathe. Raised the trunk and leaned against the rear bumper, hoping I'd spot a good samaritan or a state cop whizzing by. In the back of my mind scenes from my niece's death, 5 years ago, on the side of a Florida interstate, trying to troubleshoot engine problems, mowed down by an out-of-control tractor-trailer . . . I wasn't THERE but I was there . . .
I was in luck. A k-9 unit pulled up, took my info and relayed it to the state troopers but no one showed up.
Joe from PA came by half an hour later and changed the tire in less than 5 minutes, refusing to take the $40 I tried to press on him.
"You've redeemed my faith in human nature," I told him
By this time I was close to passing out; didn't want to drive 60 miles back to my cottage on a spare, got off the next exit and bought a couple of new tires at a local Mavis, drove home, called the gastro telling them why I hadn't shown up, forced myself to go to the local Walmart to buy one of those prepaid phones coz with my luck, when i try to make the trip again tomorrow I'll have a similar incident requiring access to AAA and will once again be stuck.
I'm wiped out. One friggin little crisis and I'm burned, wondering how I'm gonna manage the trip tomorrow. Wondering how I managed to get back home safely today. Wondering if I'll ever again be able to handle such irritating but routine daily crises. . .
Feeling weak, scared, realizing I have next to zero strength left . . .
Very depressed.
Just had to ramble. Thanks.
wyntre
And when you are completely done...
Let me tell you...
It's like coming out of a dark - dank - horrible nightmare tunnel...
And you'll look back and shrug your shoulders and bounce off like Thumper.
TRUST ME.
Let me tell you...
It's like coming out of a dark - dank - horrible nightmare tunnel...
And you'll look back and shrug your shoulders and bounce off like Thumper.
TRUST ME.
Wyn - OMG - that is such a nightmare day!!!!!!!
But - on the other hand --- That which does not kill us - makes us stronger... (can we strangle that person who said that? LOL!)
You're not an invalid.
You're not weak.
You're not an idiot --- or any other of those things... You're just tired. And you've just put your body through hell and back.
But you're getting better.
Cause see... On TX --- in the throes of the chemicals --- you wouldn't be thinking ahead... You would have just stumbled to the next day.
But --- you're planning --- going to the store to get a phone... planning out your trip..
So yeah - it's gradual - but hon - you're moving in the right direction.
MANY Hugs darlin.
Meki
But - on the other hand --- That which does not kill us - makes us stronger... (can we strangle that person who said that? LOL!)
You're not an invalid.
You're not weak.
You're not an idiot --- or any other of those things... You're just tired. And you've just put your body through hell and back.
But you're getting better.
Cause see... On TX --- in the throes of the chemicals --- you wouldn't be thinking ahead... You would have just stumbled to the next day.
But --- you're planning --- going to the store to get a phone... planning out your trip..
So yeah - it's gradual - but hon - you're moving in the right direction.
MANY Hugs darlin.
Meki
"OK. I confess. I'm doing the how-long-can-i avoid-taking-the next-peg-injection dance.
D*mn! i hate this. What time do you do yours? "
I do mine at 6:00 am thursday mornings, for the very reason you mention....I hated the anticipation and I'm not a very good dancer(G) Pro
D*mn! i hate this. What time do you do yours? "
I do mine at 6:00 am thursday mornings, for the very reason you mention....I hated the anticipation and I'm not a very good dancer(G) Pro
Love that!
I've just been rereading Edith Wharton's Ethan Frome and that looks like a happy version of the book setting.
OK. I confess. I'm doing the how-long-can-i avoid-taking-the next-peg-injection dance.
D*mn! i hate this. What time do you do yours?
wyn
I've just been rereading Edith Wharton's Ethan Frome and that looks like a happy version of the book setting.
OK. I confess. I'm doing the how-long-can-i avoid-taking-the next-peg-injection dance.
D*mn! i hate this. What time do you do yours?
wyn
no, not mine, just borrowed.....I'm kinda into barns...changed again....
thinking of ordering this Charles Wysocki print- whistlestop christmas, I've had it on the puter as wallpaper for years. I have a few Will Mosses prints and think this one would blend well.
Kinda gives you that warm and fuzzy feeling (g)
http://www.christcenteredmall.com/stores/art/wysocki/whistle-stop-christmas-zoom.jpg
thinking of ordering this Charles Wysocki print- whistlestop christmas, I've had it on the puter as wallpaper for years. I have a few Will Mosses prints and think this one would blend well.
Kinda gives you that warm and fuzzy feeling (g)
http://www.christcenteredmall.com/stores/art/wysocki/whistle-stop-christmas-zoom.jpg
Hey... I Have had my Hep C since 1983 too... blood transfusion when I had my daughter Jade. She is married and living in Florida... Orange Park. Seeing your profile made me really miss her. I haven't told her the news... can't see any sense right now with all the miles between us. I am in Maryland.
#49...............................1328 riba to go (lol)
My last shipment of riba came in capsule form...I've had various shapes and sizes of pills, but these are the first capsules
My last shipment of riba came in capsule form...I've had various shapes and sizes of pills, but these are the first capsules
Never heard of them but I will track them down for sure.
glad derm checked out ok.
Shot 41 tonight and neup tomorrow. You must be around #48, right?
wyn
glad derm checked out ok.
Shot 41 tonight and neup tomorrow. You must be around #48, right?
wyn
"Why the dermatologist? " Just an annual checkup. Checked out fine...;^)
You mentioned an orchard during your tire ordeal.....Tip O the day,,orchards began picking "Honey Crisp" apples around here a few weeks ago....If you have never had a honey crisp apple, you ain't been liv'in right, they are absolutely fab.....
You mentioned an orchard during your tire ordeal.....Tip O the day,,orchards began picking "Honey Crisp" apples around here a few weeks ago....If you have never had a honey crisp apple, you ain't been liv'in right, they are absolutely fab.....
The bird's name is . . . .
WHAT!!!!!!!
I agree - maybe Marie has a secret pet name for the conure, something pronounceable!
BTW, something that often works with birds is taking them into a small space, like a bathroom, for training. They can't get any speed up and can't injure themselves if they try to fly away coz there's nowhere to go.
just make sure you tell Nick to CLOSE the toilet cover! Seriously!
birds have been known to land there by mistake and . . . yup. . . . drown.
Oh, I'm a virtual encyclopedia of useless parrot lore. *LOL*
wyn
WHAT!!!!!!!
I agree - maybe Marie has a secret pet name for the conure, something pronounceable!
BTW, something that often works with birds is taking them into a small space, like a bathroom, for training. They can't get any speed up and can't injure themselves if they try to fly away coz there's nowhere to go.
just make sure you tell Nick to CLOSE the toilet cover! Seriously!
birds have been known to land there by mistake and . . . yup. . . . drown.
Oh, I'm a virtual encyclopedia of useless parrot lore. *LOL*
wyn
*LOL*
yeah, it's weird. ya don't know whether to offer congratulations or condolences.
Thanks for the concern about meds but the office manager has already gotten pre-authorization from the prescription plan for peg, riba and she's working on the neup.
the correspondence I have says the refills are approved through April, 2008, so i guess I'm good to go on that front.
that's one reason i don't want to change Dr.'s right now, despite the long RT. The staff is so competent, efficient and on top of all paperwork.
So at least these pumpkins are in a row. (can't stand the thought of the poor ducks suffering)
I know what you mean about all the appointments. Sometimes I feel like an old car going in for replacement parts. Often wish I could ditch the current model and get a whole new body. hahahaha
Why the dermatologist?
wyntre
yeah, it's weird. ya don't know whether to offer congratulations or condolences.
Thanks for the concern about meds but the office manager has already gotten pre-authorization from the prescription plan for peg, riba and she's working on the neup.
the correspondence I have says the refills are approved through April, 2008, so i guess I'm good to go on that front.
that's one reason i don't want to change Dr.'s right now, despite the long RT. The staff is so competent, efficient and on top of all paperwork.
So at least these pumpkins are in a row. (can't stand the thought of the poor ducks suffering)
I know what you mean about all the appointments. Sometimes I feel like an old car going in for replacement parts. Often wish I could ditch the current model and get a whole new body. hahahaha
Why the dermatologist?
wyntre
Congrats (I guess(g)) on getting your extensions approved...Zazza, I script in hand-nice...I never actually get anything from my doc...everything is computerized...
Wyntre, perhaps now is the time to get a backup plan for meds in place---just incase your insurance co screws with you....Not sure which peg you're on, but I would call for assistance info from the manufacturer....Ask your doc when he/she is going to submit the script for extension...Check with your insurance company about extended benefits for tx.....get those ducks in a row, and you will have one more less thing to worry about...........;^)
Off to the skin doc today for a checkup.....hepatologist,dentist,opthamologist,dermatologist.....I feel like a patient-ist (LOL)
Wyntre, perhaps now is the time to get a backup plan for meds in place---just incase your insurance co screws with you....Not sure which peg you're on, but I would call for assistance info from the manufacturer....Ask your doc when he/she is going to submit the script for extension...Check with your insurance company about extended benefits for tx.....get those ducks in a row, and you will have one more less thing to worry about...........;^)
Off to the skin doc today for a checkup.....hepatologist,dentist,opthamologist,dermatologist.....I feel like a patient-ist (LOL)
The reason you haven't seen many posts from me is really stupid. My family and I don't like to watch TV series because we get crazy when we miss a show, so we wait for the DVD to come out before we even start. Well, my niece bought the boxed set of West Wing, and it's totally addicting. We've watched the first 4 years worth of shows in the past 2 weeks. It's crazy. The Sopranos are next.
Feel well,
pigeon
Feel well,
pigeon
What's the bird's name?
Sounds like he's already bonded with Marie. It might end up being her bird. That does happen fairly frequently that a bird will prefer one member of the couple more than the other.
Yes, the step-ups are the first training Nick should do, holding one perch in each hand and alternating the placement of the free one under the birds belly. My guys used to love that. Plus it protects the human from biting.
next thing is to slowly and calmly try to touch the toes. That may take a couple of days, even a couple of weeks. never keep the training going to the point the bird gets stressed.
treats are good. a lot of parrot people like to offer them between their lips - it encourages bonding. . ,Venus often tries to feed me. Most parrots adore millet spray, all kinds of fresh fruit and veggies and people food.
Before I became a vegan, i used to buy roasters for Bonnie (my deceased puppy) and Venus would fly onto the bird and start peeling away the skin.
"That could be your relative!" I'd yell at her.
Just tell nick NOT to insist on much from the bird right now other than that he's relaxed and confortable.
Sprayihg him with a plant bottle is something most birds like, plus it gives them something to do - it takes around 6 hours per day for them to preen all their feathers.
Also, the bird should be let out of the cage for short periods.
As long as Nick is using perches he shouldn't get bitten and pretty soon he should be able to graduate to finger training.
of course if the conure has a huge crush on Marie, all bets are off. *LOL*
I'll dig up some conure info and post it in your messages section.
wyn
wynY
Sounds like he's already bonded with Marie. It might end up being her bird. That does happen fairly frequently that a bird will prefer one member of the couple more than the other.
Yes, the step-ups are the first training Nick should do, holding one perch in each hand and alternating the placement of the free one under the birds belly. My guys used to love that. Plus it protects the human from biting.
next thing is to slowly and calmly try to touch the toes. That may take a couple of days, even a couple of weeks. never keep the training going to the point the bird gets stressed.
treats are good. a lot of parrot people like to offer them between their lips - it encourages bonding. . ,Venus often tries to feed me. Most parrots adore millet spray, all kinds of fresh fruit and veggies and people food.
Before I became a vegan, i used to buy roasters for Bonnie (my deceased puppy) and Venus would fly onto the bird and start peeling away the skin.
"That could be your relative!" I'd yell at her.
Just tell nick NOT to insist on much from the bird right now other than that he's relaxed and confortable.
Sprayihg him with a plant bottle is something most birds like, plus it gives them something to do - it takes around 6 hours per day for them to preen all their feathers.
Also, the bird should be let out of the cage for short periods.
As long as Nick is using perches he shouldn't get bitten and pretty soon he should be able to graduate to finger training.
of course if the conure has a huge crush on Marie, all bets are off. *LOL*
I'll dig up some conure info and post it in your messages section.
wyn
wynY
Zazza,
how many kids?
This is the first year in the past 20 that I haven't gone back to 500-1000 kids per week. I don't miss it at all, especially the screaming part. *LOL*
Of course, none of these kids were biologically related to me.
As long as your blood counts are within range I don't see why your Dr. would have a problem. I'm glad you've got your stash in place.
Katerika,
Thanks for the sentiments.
Yup! I'm crazy as a loon these days. It is the meds, as you know, or maybe it was the Harvest Moon Proactive mentioned.
Funny, I've NEVER done a public meltdown before joining this forum. That says something about how comfortable and non-judgemental this place is.
wyntre
how many kids?
This is the first year in the past 20 that I haven't gone back to 500-1000 kids per week. I don't miss it at all, especially the screaming part. *LOL*
Of course, none of these kids were biologically related to me.
As long as your blood counts are within range I don't see why your Dr. would have a problem. I'm glad you've got your stash in place.
Katerika,
Thanks for the sentiments.
Yup! I'm crazy as a loon these days. It is the meds, as you know, or maybe it was the Harvest Moon Proactive mentioned.
Funny, I've NEVER done a public meltdown before joining this forum. That says something about how comfortable and non-judgemental this place is.
wyntre
Thanks Elaine.
You gotta tell me all about the conure; is he hand-raised - is Nick the first human . .male or female? how old? what kind of cage? Is he perch trained?
tell Nick to take it slow for now with the parrot. they have a fairly long life span - 30+ years and Nick will have plenty of time to work with him.
It's gonna take a while for the bird to calm down, especially if he's not hand-raised and is not a baby. So Nick has to be patient. Perch training is the first thing he should do, and it will solve the biting problem for now.
(Why'd ya tell me about the conure? *LOL*)
Two other things; Are the bird's wings clipped? I hope not. Let me know. And how long has Nick had the conure?
wyntre
You gotta tell me all about the conure; is he hand-raised - is Nick the first human . .male or female? how old? what kind of cage? Is he perch trained?
tell Nick to take it slow for now with the parrot. they have a fairly long life span - 30+ years and Nick will have plenty of time to work with him.
It's gonna take a while for the bird to calm down, especially if he's not hand-raised and is not a baby. So Nick has to be patient. Perch training is the first thing he should do, and it will solve the biting problem for now.
(Why'd ya tell me about the conure? *LOL*)
Two other things; Are the bird's wings clipped? I hope not. Let me know. And how long has Nick had the conure?
wyntre
didn't read about your ordeal until now. The good thing reading the thread was seeing that these moods too will pass. Congrat's for deciding to go the 70+ weeks.When did you reach UND? Some days it gets overwhelming and it just sux. I am horrible those days when I feel hopeless. I tend to bring down my support as well. Keep that song refrain in mind. "I get knocked down, I get up again,nothing gonna keep me down!
Hugs & msending you positive energy
Teri
Hugs & msending you positive energy
Teri
My blood counts aren't that bad. It is just that my doc goes entirely by the book. "Reduce riba at a hgb of 10...", but my nurse forgot to notify him that it went down to 9.5. Sometimes you gotta be lucky.
Kids are back. I am yelling at them most of the time. Dog is lucky to still be away. My eating habits are totally out of order, I often skip dinner, but today I ate steak at both 10 am and 5 pm. My body shrieked after protein!
I am glad to hear you seem to be doing better after week 40.
Zazza
Kids are back. I am yelling at them most of the time. Dog is lucky to still be away. My eating habits are totally out of order, I often skip dinner, but today I ate steak at both 10 am and 5 pm. My body shrieked after protein!
I am glad to hear you seem to be doing better after week 40.
Zazza
What's up with your blood counts?
is it the HgB or the ANC?
My WBC and ANC tanked the first month of TX going down to less than 25% of pre TX levels. Dr. put me on twice monthly neupogen and while those counts still haven't risen to more than 50% of their original level, at least it's kept them under control.
The flat tire thing was EASIER somehow than waiting on line at HOME DEPOT!
Maybe coz i knew I'd be up the creek if I didn't handle it. It took every ounce of self-control and restraint I had.
The notion of being stuck there for hours, 60 miles from home and NOT getting back to the cottage was worse than dealing with car repair it but it took my last reserves of energy to get through it.
And, true to form, while I didn't meltdown on the spot, as Jools put it, everyone on Forum got to witness the print version last night! *LOL*
How are you doing today?
wyn
is it the HgB or the ANC?
My WBC and ANC tanked the first month of TX going down to less than 25% of pre TX levels. Dr. put me on twice monthly neupogen and while those counts still haven't risen to more than 50% of their original level, at least it's kept them under control.
The flat tire thing was EASIER somehow than waiting on line at HOME DEPOT!
Maybe coz i knew I'd be up the creek if I didn't handle it. It took every ounce of self-control and restraint I had.
The notion of being stuck there for hours, 60 miles from home and NOT getting back to the cottage was worse than dealing with car repair it but it took my last reserves of energy to get through it.
And, true to form, while I didn't meltdown on the spot, as Jools put it, everyone on Forum got to witness the print version last night! *LOL*
How are you doing today?
wyn
Oh, you did good, presenting those studies to your doc and getting your 72 weeks approved! It feels good to know that the road ahead of us is approved and "all" we have to do is walk down it til we reach the end.
My doc has been a little edgy about my blood counts lately, so I was afraid he would back off from his promise to let me extend. But now with the prescription for the remaining meds in my posession, nothing will stop me.
I can't even imagine the ordeal you went through with the flat tire. I have problem standing in line, waiting for my turn, in the grocery store. I feel like telling everyone, or shouting really: "Don't you understand what it is like to be on ribavirin! Let me through!"
My doc has been a little edgy about my blood counts lately, so I was afraid he would back off from his promise to let me extend. But now with the prescription for the remaining meds in my posession, nothing will stop me.
I can't even imagine the ordeal you went through with the flat tire. I have problem standing in line, waiting for my turn, in the grocery store. I feel like telling everyone, or shouting really: "Don't you understand what it is like to be on ribavirin! Let me through!"
I'm glad the trip went better today...hang in there...you have made it so far!!!..i totally understand about the meltdowns, and feeling so unable to do anything...i hate that part of these meds...but you/we are strong!!!!....be blessed....and know we are pulling for you!!!!
Pigeon,
Awwww, I wouldn't ask my worse enemy to drive through NJ for me! As long as the labs remain at current levels, I should only have to make that trip for 8 more months, 4 -8 more times altogether.
Tasha,
Thanks lady. How are you doing? I haven't seen too many posts from you recently
Awwww, I wouldn't ask my worse enemy to drive through NJ for me! As long as the labs remain at current levels, I should only have to make that trip for 8 more months, 4 -8 more times altogether.
Tasha,
Thanks lady. How are you doing? I haven't seen too many posts from you recently
zazza, pro,
I got the official go-ahead from my gastro today. it's full steam ahead for the 72.
After presenting him with copies of the studies Valtod provided links to, as well as the berg (thanks Za), Sanchez and a few others, he agreed it made sense for me to continue.
I asked him what he would do if he were in my situation and he said he would also try to improve his odds of SVR and that 6 months of additional TX for a much better chance of a cure sounded right to him.
So, here I go - 40 weeks down, 32 to go.
BTW - I'm still UND - he does PCR's every month or two.
Zazza,
You must be thrilled to have the last 24 shots in your possession. it represents the end of this marathon for you. I'm gonna post when i get my last shipment, too. (sometime in early February).
So sorry to hear you've been having the tearies. Me too (except i don't exactly cry). Must be the cumulative effect of the meds.
Pro,
Love the autumn barn scene.
Susan,
I can't imagine going through this nightmare 9 times! Of course you're having down moments! I just wish you could get into a trial group. Hopefully the new drugs will be available soon.
NYGirl,
Even YOU would have known you had a flat tire! Man, I was going about 80mph, in the far left lane, when the car started shimmying and shivering and grinding along the blacktop. I don't know how I managed to get over to the right shoulder as there were tractor trailers to the side, front and rear of me.
When I got out to check the damage, it wasn't just a FLAT tire; it was SHREDDED rubber! No slow leak there. Guess I must have run over something real sharp.
dlr,
Thanks for the kind words. And, don't worry too much; some people have much milder reactions to TX or, if they do have hard stretches, it's generally not every single day. You're quite young so i would imagine your body might be able to handle the meds fairly well. Still, it's no walk-in-the-park.
Pigeon,
Awwww, I wouldn't ask my worse enemy to drive through NJ for me! As long as the labs remain at current levels, I should only have to make that trip for 8 more months, 4 -8 more times altogether.
Tasha,
Thanks lady. How are you doing? I haven't seen too many posts from you recently
I got the official go-ahead from my gastro today. it's full steam ahead for the 72.
After presenting him with copies of the studies Valtod provided links to, as well as the berg (thanks Za), Sanchez and a few others, he agreed it made sense for me to continue.
I asked him what he would do if he were in my situation and he said he would also try to improve his odds of SVR and that 6 months of additional TX for a much better chance of a cure sounded right to him.
So, here I go - 40 weeks down, 32 to go.
BTW - I'm still UND - he does PCR's every month or two.
Zazza,
You must be thrilled to have the last 24 shots in your possession. it represents the end of this marathon for you. I'm gonna post when i get my last shipment, too. (sometime in early February).
So sorry to hear you've been having the tearies. Me too (except i don't exactly cry). Must be the cumulative effect of the meds.
Pro,
Love the autumn barn scene.
Susan,
I can't imagine going through this nightmare 9 times! Of course you're having down moments! I just wish you could get into a trial group. Hopefully the new drugs will be available soon.
NYGirl,
Even YOU would have known you had a flat tire! Man, I was going about 80mph, in the far left lane, when the car started shimmying and shivering and grinding along the blacktop. I don't know how I managed to get over to the right shoulder as there were tractor trailers to the side, front and rear of me.
When I got out to check the damage, it wasn't just a FLAT tire; it was SHREDDED rubber! No slow leak there. Guess I must have run over something real sharp.
dlr,
Thanks for the kind words. And, don't worry too much; some people have much milder reactions to TX or, if they do have hard stretches, it's generally not every single day. You're quite young so i would imagine your body might be able to handle the meds fairly well. Still, it's no walk-in-the-park.
Pigeon,
Awwww, I wouldn't ask my worse enemy to drive through NJ for me! As long as the labs remain at current levels, I should only have to make that trip for 8 more months, 4 -8 more times altogether.
Tasha,
Thanks lady. How are you doing? I haven't seen too many posts from you recently
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