In a crappy situation need some words of wisdom

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D1G1L1O

New member
Well to start ima 21 year old male from philly, been pretty healthy up untill this last year. I was in literaly the best shape of my life right befor this all started i was trainning to be a amature MMA fighter about to goback to finish school for motorcycle mechanics wich is my passion. My FEV1 was over 100. I also have substance abuse issues since I was about 14 in the last year and a half I got my life back together as far as health and no more jail or rehab i mean i had my fair share of hospital stays on iv but always tryed my hardest to bounce back pretty quick. But this thanksgiving i started having crazy stomac issues they thought it was just blockage related to CF long story short i had what was called a intussusception. My large intestine was like telescoped inside it self it was very painfull soon as they knew that i was rushed into the OR that night on jan 9th came out the hospital about a week later on some narcotics witch was a nessasary evil in that situation, well i started having a CF episode about 2 weeks after went in again 10 days in there im still on home IV now and still on painkiller wich was my drug of choice. Well about two weeks ago i stole the bottle of my aunt who i live with and took about 6 times as much as i was supposed to so after i called my doc and explained the whole thing whitch they knew was a risk i was tryingto be very open about it and so i got more pills and weaned off like they said no extra nothing like that and i instantly got sick caughing so bad unbareble pain in my abbs and ribs my numbers are down alot from my baseline and when the pain isent under controll i cant clear me airways when i cought due to that the pain comes back it sucks so bad so im back on the pills now and going thru what i did my mom is woryying im gonna go back to drugs its just all bad.im just trying to be strong i never been sick for this long my little brother is 18 and also has CF we are both sick and at the docs today he is in that stage where he dont wanna do treatments nd stuff and i did the same thing at his age and i can tell he is thinking more about death and what not just by some of his comment today he is the same way i was at 18. Idk i gess i just wanted to vent or talk or whatever i come on here and hear ppl talk about their health and i need to be greatfull for what i have its just hard being what ime going thru mixed with past problems with drinking/drugs and depression and what not. So idk if anyone can relate to anything i just said i kno i was all over the place but whatever

P.s im on a iphone so spelling and grammer is bad i kno bare with me
 
D

D1G1L1O

New member
Well to start ima 21 year old male from philly, been pretty healthy up untill this last year. I was in literaly the best shape of my life right befor this all started i was trainning to be a amature MMA fighter about to goback to finish school for motorcycle mechanics wich is my passion. My FEV1 was over 100. I also have substance abuse issues since I was about 14 in the last year and a half I got my life back together as far as health and no more jail or rehab i mean i had my fair share of hospital stays on iv but always tryed my hardest to bounce back pretty quick. But this thanksgiving i started having crazy stomac issues they thought it was just blockage related to CF long story short i had what was called a intussusception. My large intestine was like telescoped inside it self it was very painfull soon as they knew that i was rushed into the OR that night on jan 9th came out the hospital about a week later on some narcotics witch was a nessasary evil in that situation, well i started having a CF episode about 2 weeks after went in again 10 days in there im still on home IV now and still on painkiller wich was my drug of choice. Well about two weeks ago i stole the bottle of my aunt who i live with and took about 6 times as much as i was supposed to so after i called my doc and explained the whole thing whitch they knew was a risk i was tryingto be very open about it and so i got more pills and weaned off like they said no extra nothing like that and i instantly got sick caughing so bad unbareble pain in my abbs and ribs my numbers are down alot from my baseline and when the pain isent under controll i cant clear me airways when i cought due to that the pain comes back it sucks so bad so im back on the pills now and going thru what i did my mom is woryying im gonna go back to drugs its just all bad.im just trying to be strong i never been sick for this long my little brother is 18 and also has CF we are both sick and at the docs today he is in that stage where he dont wanna do treatments nd stuff and i did the same thing at his age and i can tell he is thinking more about death and what not just by some of his comment today he is the same way i was at 18. Idk i gess i just wanted to vent or talk or whatever i come on here and hear ppl talk about their health and i need to be greatfull for what i have its just hard being what ime going thru mixed with past problems with drinking/drugs and depression and what not. So idk if anyone can relate to anything i just said i kno i was all over the place but whatever

P.s im on a iphone so spelling and grammer is bad i kno bare with me
 
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Incomudrox

New member
Where in Philly are you? Do you goto CHOP or UPENN or another CF center? I'm in South Philly let me know if there is any way I can help you out. I think you just need to take it one step at a time, you mentioned a few issues I'd say start with the smallest issue one at a time and work your way up.
 
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Incomudrox

New member
Where in Philly are you? Do you goto CHOP or UPENN or another CF center? I'm in South Philly let me know if there is any way I can help you out. I think you just need to take it one step at a time, you mentioned a few issues I'd say start with the smallest issue one at a time and work your way up.
 
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D1G1L1O

New member
Im right in south philly too right off 12th and Ritner about 10 min from UPENN I been there for about 2 years and been at CHOP my whole life.
 
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D1G1L1O

New member
Im right in south philly too right off 12th and Ritner about 10 min from UPENN I been there for about 2 years and been at CHOP my whole life.
 
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Incomudrox

New member
Nice - I'm on 20th and tasker... I went to CHOP from 15-19 I saw dr.mayer mainly amazing dude. If you ask about Frank they will know who you are talking about especially debbie.. Anyhow I goto UPenn now only because I moved to Pittsburgh for 2 years then came back to here. They wouldn't let me back because it's against policy if you leave. My advise don't leave unless you have to UPENNs inpatient sucks room food etc.... Outpatient and clinic is great I prefer it over peds.. No bs.

As far as getting stuff out you might try mucinex to help loosen things up and make your cough more productive to lessen the amount of time you need to cough
 
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Incomudrox

New member
Nice - I'm on 20th and tasker... I went to CHOP from 15-19 I saw dr.mayer mainly amazing dude. If you ask about Frank they will know who you are talking about especially debbie.. Anyhow I goto UPenn now only because I moved to Pittsburgh for 2 years then came back to here. They wouldn't let me back because it's against policy if you leave. My advise don't leave unless you have to UPENNs inpatient sucks room food etc.... Outpatient and clinic is great I prefer it over peds.. No bs.

As far as getting stuff out you might try mucinex to help loosen things up and make your cough more productive to lessen the amount of time you need to cough
 
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beleache

New member
Hi,
I am sorry you are going through so much right now.. It is hard but you can overcome these obstacles , you have done it in the past & you can do it again (talking about the drugs) I know it isnt easy (ive been there myself) but you sound like a very determined young man.
You have a lot going on & I think you could probably use some outside help. Have you talked to your social worker at your clinic ? Maybe you can go for therapy ? I spoke to a psychiatrist & it really helped me. It is important to find one that you have a good rapport with.
I've also gone for counseling w/ my priest. There are many choices available & you should look for the best one for you. It is hard going through what you have explained by yourself.
We CF'ers go through some pretty rough patches in our lives, but you can bounce back with hard work & the drs. getting you back on track.
Frank has offered to talk with you & who better than a fellow CF'er to be able to talk to..
I hope & pray that you get back on track soon. If you want to talk, PM me..
Take care . joni
 
B

beleache

New member
Hi,
I am sorry you are going through so much right now.. It is hard but you can overcome these obstacles , you have done it in the past & you can do it again (talking about the drugs) I know it isnt easy (ive been there myself) but you sound like a very determined young man.
You have a lot going on & I think you could probably use some outside help. Have you talked to your social worker at your clinic ? Maybe you can go for therapy ? I spoke to a psychiatrist & it really helped me. It is important to find one that you have a good rapport with.
I've also gone for counseling w/ my priest. There are many choices available & you should look for the best one for you. It is hard going through what you have explained by yourself.
We CF'ers go through some pretty rough patches in our lives, but you can bounce back with hard work & the drs. getting you back on track.
Frank has offered to talk with you & who better than a fellow CF'er to be able to talk to..
I hope & pray that you get back on track soon. If you want to talk, PM me..
Take care . joni
 
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joshannon

New member
Hey D1G1L10, I was doubled over in intense stomach pain last night, having an adverse reaction to Metronidazole, which I was taking to stop persistent IBS-D symptoms (that I have been having for the last 3 weeks). Personally, I have so many medical issues - I just don't worry about them. I have devised a wrist band - with a mind map inside that matches conditions to medical or herbal remedies. One time I was flying a plane with an Air Force friend, and we ran into a wall of dark cloud. We were flying VFR (Visual Flight Rules), so we had to be able to see the ground. There was light in one corner - and though perhaps we could make the jump (to light speed), and get through the gap and beat the storm. (We could not, we all need to persevere the course set before us). We decided to do a big U turn, the wall of cloud was moving fast and was on us, we were tossed about like clothes in a washing machine - literally that bad, it was impossible to stay in the air, and had to make a mayday landing. This was in NZ in the wilderness that is Taumaranui, after a frantic search though the airstrip guide we found a small airstrip and radioed the tower for an emergency landing. We were lucky. A plane behind us on IVR took the same chance we were looking at, and the they crashed killing all on board instantly. Moral of this story, is these storms appear in our lives, that on the face of it could break us, but if we seek help (like my pilot friend in the story), we can get through a storm and land safely. I too am trying to land safely. Take Care,
 
J

joshannon

New member
Hey D1G1L10, I was doubled over in intense stomach pain last night, having an adverse reaction to Metronidazole, which I was taking to stop persistent IBS-D symptoms (that I have been having for the last 3 weeks). Personally, I have so many medical issues - I just don't worry about them. I have devised a wrist band - with a mind map inside that matches conditions to medical or herbal remedies. One time I was flying a plane with an Air Force friend, and we ran into a wall of dark cloud. We were flying VFR (Visual Flight Rules), so we had to be able to see the ground. There was light in one corner - and though perhaps we could make the jump (to light speed), and get through the gap and beat the storm. (We could not, we all need to persevere the course set before us). We decided to do a big U turn, the wall of cloud was moving fast and was on us, we were tossed about like clothes in a washing machine - literally that bad, it was impossible to stay in the air, and had to make a mayday landing. This was in NZ in the wilderness that is Taumaranui, after a frantic search though the airstrip guide we found a small airstrip and radioed the tower for an emergency landing. We were lucky. A plane behind us on IVR took the same chance we were looking at, and the they crashed killing all on board instantly. Moral of this story, is these storms appear in our lives, that on the face of it could break us, but if we seek help (like my pilot friend in the story), we can get through a storm and land safely. I too am trying to land safely. Take Care,
 
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