Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 Re: Re: chiropractor ...... and now im on 120 mgs of morphine a day. ****************************************************** TJ, do you find the morphine helps? No matter what the Drs try for Dylan, nothing gets him lower that a 7.5 in pain. The Dr has him on 200 MG a day morphine Slow release and 60 MG instant release for break through. I don't know what it is going to take to get him at a functional level. I so badly want to get this kid out of his room and back in the world. Cindylouwho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 Not sure yet Cindy- Too soon to tell- this is only the 3rd day I've been on it, but sure helps more than that methadone- I'm at least getting some sleep. I'd say I'm pretty much at same pain level mostly continuous as Dylan there- with ups of about 13 when it strikes bad bad- I didn't even know they had 200 mg morphine- wow- I hope not to have to take that much- makes me scared that when I have an emergency and go in, that nothing will be able to help my pain ( grown immune to all )- I still haven't been out except court and drs- and it kills me to get out- but I am able to move around in my house better on these than the methadone.... gosh that was so many pills to swallow..... I felt like a human drug shoppe. Wondering why they put him on such high dose and no tests? Seems like a lot for a kid without tests and being watched over.... or is he? Sorry- guess with mom being sick too- my memory is failing.... Feels like the whole world is caving in lately- and most likely there will be no breathing until that hearing is over on June 4..... I hate liars- and when my 11 yr old tells me something his dad said to him that is a lie- which the dad knows is a lie gets my goat- example- when he tried to kill their dogs and my parents got the papers with kens signature- he told the boys i forged his name- what a jerk- what a jerk........ here he told the lady ( that they were dropp offs and he didnt have the proper attire to care for them ) - he had em for a yr with MY DOG PEN...... because I was too ill to care for them.... but it was temporary and night before we had made plans for my dad and the boys to come get them- dad was going to take care of the dogs- and that idiot let his own son show up to an EMPTY pen and no source of info where they were- so when the younger one called him crying- he said " I gave them to someone who will take care of them- a friend at work " - another lie........... for some reason Dakota kept bugging me to call the dog pound...... even though I didn't think they'd be there I did call to hush Dakota- Dakota was right- there they were- and papers signed by ken etc- that he tells the boys I forged his name on- grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr How can someone lie so much- and that is not the only time- he's lied from day 1 and gets away with it.... wish I wasn't so ill, It would be worth a permanent stay in jail to stand on his face with a high heel. A heel for a heel! Sorry- got a bit winded. He just irritates me so and Dakota just mentioned this and got my goat again..... lies all lies and now he married quick a nurse ------ a nurseeeeeeee who claims to know all about EDS........ then she asked Dakota " What illness does your mother ------- claim --------- she has.. ughhhhhh and will be working at my hospital??? Guess she went to find her little medical book to look up my illness- like thats gonna be up to date- Why can't they just bug off..... both of em? Hugssss TJ ...... and now im on 120 mgs of morphine a day. ****************************************************** TJ, do you find the morphine helps? No matter what the Drs try for Dylan, nothing gets him lower that a 7.5 in pain. The Dr has him on 200 MG a day morphine Slow release and 60 MG instant release for break through. I don't know what it is going to take to get him at a functional level. I so badly want to get this kid out of his room and back in the world. Cindylouwho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 Not sure yet Cindy- Too soon to tell- this is only the 3rd day I've been on it, but sure helps more than that methadone- I'm at least getting some sleep. I'd say I'm pretty much at same pain level mostly continuous as Dylan there- with ups of about 13 when it strikes bad bad- I didn't even know they had 200 mg morphine- wow- I hope not to have to take that much- makes me scared that when I have an emergency and go in, that nothing will be able to help my pain ( grown immune to all )- I still haven't been out except court and drs- and it kills me to get out- but I am able to move around in my house better on these than the methadone.... gosh that was so many pills to swallow..... I felt like a human drug shoppe. Wondering why they put him on such high dose and no tests? Seems like a lot for a kid without tests and being watched over.... or is he? Sorry- guess with mom being sick too- my memory is failing.... Feels like the whole world is caving in lately- and most likely there will be no breathing until that hearing is over on June 4..... I hate liars- and when my 11 yr old tells me something his dad said to him that is a lie- which the dad knows is a lie gets my goat- example- when he tried to kill their dogs and my parents got the papers with kens signature- he told the boys i forged his name- what a jerk- what a jerk........ here he told the lady ( that they were dropp offs and he didnt have the proper attire to care for them ) - he had em for a yr with MY DOG PEN...... because I was too ill to care for them.... but it was temporary and night before we had made plans for my dad and the boys to come get them- dad was going to take care of the dogs- and that idiot let his own son show up to an EMPTY pen and no source of info where they were- so when the younger one called him crying- he said " I gave them to someone who will take care of them- a friend at work " - another lie........... for some reason Dakota kept bugging me to call the dog pound...... even though I didn't think they'd be there I did call to hush Dakota- Dakota was right- there they were- and papers signed by ken etc- that he tells the boys I forged his name on- grrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrrr How can someone lie so much- and that is not the only time- he's lied from day 1 and gets away with it.... wish I wasn't so ill, It would be worth a permanent stay in jail to stand on his face with a high heel. A heel for a heel! Sorry- got a bit winded. He just irritates me so and Dakota just mentioned this and got my goat again..... lies all lies and now he married quick a nurse ------ a nurseeeeeeee who claims to know all about EDS........ then she asked Dakota " What illness does your mother ------- claim --------- she has.. ughhhhhh and will be working at my hospital??? Guess she went to find her little medical book to look up my illness- like thats gonna be up to date- Why can't they just bug off..... both of em? Hugssss TJ ...... and now im on 120 mgs of morphine a day. ****************************************************** TJ, do you find the morphine helps? No matter what the Drs try for Dylan, nothing gets him lower that a 7.5 in pain. The Dr has him on 200 MG a day morphine Slow release and 60 MG instant release for break through. I don't know what it is going to take to get him at a functional level. I so badly want to get this kid out of his room and back in the world. Cindylouwho Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 Re: Morphine/TJ Yes I did mention to my dr that most in the EDS group were on MS Contin and he did tell me its the same thing, just diff name- well then why not name them all the same...... Gotta be some difference? Somewhere? Somehow? ......MS Contin is Morphine that is time released. It is also known as morphine sulfate ER. The ER is extended release. The Break Through Morphine is morphine sulfalte IR. IR Means instant release. The methadone- I was up to 120 mgs per day- sometimes snuck more because it wasn't doing a darn thing....... but it never really gave me side affects except when he totally dropped the morphine that time whewwwwwwww..... that was horrible....... He went for the fentenal patch to the morphine with no problem. That still is a lot of morphine - 200 wow....... the 120 is kicking my butt- but only by making me sleep more than 2 hrs at a time- last 2 nites I actually slept a full six hrs at a time..... shocked me and my cats..... LOL......... He has sleep issues too. Keeping you and Dylan in my prayers as well....... gosh how horrible it must be to feel as he does at such a young age- Im stuck in the house too but- can't imagine being a teen and being stuck inside yek! Many Hugs- TJ The pain has really changed his life. I still have some hope that the Drs can continue to work on these meds so that he can return to school in Sept with his Elec. chair. He needs a social life and some teen age experiances. I'm afraid he is beginning to get some social mental problems now, being at home for so long. He doesn't want anyone to see him like this. Thank you for the prayers! Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 Thanks for clarifying that for me Cindy- was definitely confused. Now I understand :-) So far- going to morphine- i've been fine, it was going Off morphine and onto that methadone that threw me back into the E.R. blek- felt horrible. Dr has never mentioned the patch to me at all- will have to mention that next visit in 3 months from now- if this dosage doesnt seem to do anything - ( the 120 morphine ) I definitely know what you mean about the pain changing his life- it hurts me so darn much to get up and out that I don't do it........ plus its very unsafe as easy as I bruise but I'm getting so tired of this...... I will have to figure out something- 2 yrs in a house- 2 1/2 even- is too long- whether it be hand driven vehicle or whatever- something has to be done before I go bonkers....... I spend a lot of time doing web building etc to keep my mind busy but a person can only do so much to make a day worth waking when you can't even get out of your house. I can understand your fears as well for Dylan - and his for not wanting people to see him that way- I felt that way at first but now I don't care- but I have a lot more years behind me and would not be forced into a school setting- there is this little guy that I met on Aim- that has some type of disease- gosh I cant recall what it is, he is nearly 3 ft tall- and he is the highlight of the school- instead of staying home - he does what he can- but I don't think he is in chronic pain but the lil guy tickles me- he drives a little car- makes jokes about his problem which to me is a great way to get through all he is getting through- he was on a few talk shows too- I'll have to pm him again and get his page so you can see it..... But he was born this way- so that too makes a big difference..... it wouldn't be like having all the get go then a downer- because he has lived it all his life.... Will keep on with the prayers- all things have a way of working themselves out- ( she says - even though at times her world feels like its caving in) - you'll see- he'll end up - one day- having the desire to get out of there , just like I do of getting out of here- even if I have to deal with the pain........ I need out out out ......... Hugsssssssssssssssssss- TJ Re: Morphine/TJ Yes I did mention to my dr that most in the EDS group were on MS Contin and he did tell me its the same thing, just diff name- well then why not name them all the same...... Gotta be some difference? Somewhere? Somehow? ......MS Contin is Morphine that is time released. It is also known as morphine sulfate ER. The ER is extended release. The Break Through Morphine is morphine sulfalte IR. IR Means instant release. The methadone- I was up to 120 mgs per day- sometimes snuck more because it wasn't doing a darn thing....... but it never really gave me side affects except when he totally dropped the morphine that time whewwwwwwww..... that was horrible....... He went for the fentenal patch to the morphine with no problem. That still is a lot of morphine - 200 wow....... the 120 is kicking my butt- but only by making me sleep more than 2 hrs at a time- last 2 nites I actually slept a full six hrs at a time..... shocked me and my cats..... LOL......... He has sleep issues too. Keeping you and Dylan in my prayers as well....... gosh how horrible it must be to feel as he does at such a young age- Im stuck in the house too but- can't imagine being a teen and being stuck inside yek! Many Hugs- TJ The pain has really changed his life. I still have some hope that the Drs can continue to work on these meds so that he can return to school in Sept with his Elec. chair. He needs a social life and some teen age experiances. I'm afraid he is beginning to get some social mental problems now, being at home for so long. He doesn't want anyone to see him like this. Thank you for the prayers! Cindy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2004 Report Share Posted May 30, 2004 From: concreteangel .....I don't think the way my son is being homeschooled would really give Dylan the social life he needs- just a graduation certificate....... EXACTLY! HE NEEDS OTHER KIDS RIGHT NOW TO GROW EMOTIONALLY. Quote Link to comment Share on other sites More sharing options...
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