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Unbearable pain

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    Originally posted by Raven
    We will be also trying to see if one of my nephews will take both of us to the hospital so I can be there to speak with his doctors. I want to be informed as to what they find out and how we can tackle whatever it is that needs to be addressed. I have spoken to him and asked him not to keep anything back from his doctor and to advocate for himself so he can get the help he needs.
    Because you cannot risk the bolded not happening, he needs you to be there, JMO.

    I hope you can make it. I rode across town in the back of a Toyota pickup to make it to an appt..but it was summer.

    All the best, keep us posted.

    get busy living or get busy dying


      Originally posted by 1010011010
      have gone from friday completely dry. its been tempting but im sticking with my meds. last night i finally too the ativan 1mg. an hour later i took my next dose of neuronten. after a while i was real calm and fell asleep for atleast 3 hrs. when i awoke the pain was all there again. i took another ativan and went to bed. after lyin there a while i fell asleep again another 4 hrs. so it
      would seem that ativan brings me some short relief. i dont know if the dose is
      too small or what not but ill find out.
      Ativan has a relatively short serum half life, so it's not unexpected that it would only last about 4 hrs. When I take ativan, I usually take one, go to sleep and wake up 3-4 hrs later and take another one.


        sounds like you got a plan there,and that helps.i definitely DO really strongly feel like you do,he needs to advocate for himself,BUT he also needs to always have another person along with him at these appts so you DO stay in the loop.i always have my hubby or my mom with me for my more important/bad appts as i do not always hear everything that the docs say,ya know?it does help alot.i am glad he is taking some initiative here tho,this is something he will just have to be doing for himself for like ever.there could be a few different reasons for his higher than the norm BPs some are just pain and others can be a bit more invloved are his kidney functions.kidney problems can also cause higher than norm BPs as well as possible sympathetic nervous/para symp involvement of some level.just a few possibilities.the adrenal gland that kind of sits on top of the kidney could also be a possible cause.there are just too many possible reasons that a kid his age could have high BP.this could just be a part of whatever is actually causing all this to begin with too.but they DO most definitely need to find out whats causing this in him since high BPs can cause a host of other issues in him eventually.

        just had a thought for you here and it would be worth checking into at this point.i would make some calls to your local transportaion services type places/programs?the ones for people with disablitiys?i know around here in MN they are called DARTS?they pick people up and drop them off for doc appts and other places that people need to go to.i would contact your county social services programs and set him up with some sort of social worker who would be a big help in his life in making certain he is able to take full advantage of any possible programs availiable to the disabled.its always worth a me raven,there are many different programs availiable in most countys for people in nicks situation,its just a matter of tapping into the right resources,ya know?i would start with a call to your countys social services network and see where thattakes you.if he happens to be on SSI,this would be a huge thing that could help alot in him getting many different services that are just there.its worth the time and effort to at least check these out.also,always ask when you are making appts to certain types of hospital or specialist appts if they provide their own transportation service.i found out that the place where i have been getting all my MRIs(spinal) and ultrasounds for my kidneys and liver on a regular basis for the past eight years actually does provide free cab rides.been going there for years and always having to ask people to drive wasn't til my last MRI i needed about a month ago when i mentioned i was having trouble finding a ride there that they actually divulged the fact that they have their very own cab service availiable free of charge.shocked the heck outta me since i had been going there for many years and no one ever told me this was even availiable.would have been nice to know that like back in 01?hello?just another possibility to check into,you wont know til you ask ya know?just some helpful hints that could lighten your load.

        i do hope things go well at the appt and they can do something good for the way,who is ISIS?please keep us posted,K?if possible,ask this new doc or whoever you are seeing for a possible referral to a good pain management clinic,i really do think nick would really benefit from their more experienced knowledge in treating his types of pain.he also desperately needs a real proper Dx of his condition.what types of real testing have they done on him thus far?what were any significant results?

        i just also wanted to mention something to you that i HAD to start doing with my son when he went into liver failure years ago?start obtaining ALL and i mean every little test result and hosp reports and doc clinic notes from anyone who has ever laid hands on him and then keep it all in some sort of an expandable type folder?this helped me SOOO much when we had to go to an ER again for something or just taking it with us whenever he had an appt?all you do is grab that folder and go, has everything the docs would need right there,saves a ton of time when in a crisis and also,i have found that when seeing new specialists,some people who were supposed to forward all my records or the latest test results failed to do their jobs for me and there we would have sat,without whatever we really needed.having my own set of my records with me always,i could just reach into MY records and pull out whatever it was and have them make a copy of mine.but never ever give up any of your own records to anyone,always have them make a copy of yours.this one thing,just constantly obtaining and updating all your own records saves alot of time and hassle for you.i cannot even count the number of times that just having my own records with me for me or my son really saved our butts from something.its just a good idea when you have an ongoing condition,espescially when it keeps changing on always have the latest stuff with you.

        hope things go well on wed.please keep us posted.Marcia


          was hoping to see some kind of update after weds did things go?hows nick doing with the drinking?you two have really been on my mind.i do hope something positive came out of that appt.let us know when you can ,K?marcia


            drinking gos bad but drinking also reduces pain. it is a definitely workable painkiller, drinking also gives a big kick to other pain meds in the body, sometimes too big a kick and will cause death.
            the Bowery bums(Bowery is now a millionaires row) were not kidding when they needed a drink they were in extreme pain, since drinking an diabetes tend to go hand in hand , the stinging pain if th extremities, the toes s is relieved by drinking
            cauda equina



              Nick saw the doctor in ER yesterday. Sorry I didn't update but we were tired and trying to deal with so many things on the same day.

              Thank all so very much for caring and trying to help us. You all have been of great comfort to us during this hard time and I pray that God blesses each and everyone of you for it.

              I decided to get some more information on his Dx on the care forum, so I posted a new thread there. If you would like to follow up on it the link is .. /forum/showthread.php?p=771226#post771226

              Again, thank you all for everything. Hope we may be of some help to you all if (hopefully you won't) you need our support or help too.

              (((((Hugs & xxxxxxx))))

              Have courage for the great sorrows of life and patience for the small ones; and when you have laboriously accomplished your daily task, go to sleep in peace. ~Victor Hugo~

              A warrior is not one who always wins,
              but one who keeps on fighting to the end ~ Unknown ~


                wow.i didn't realize that you could even get neuropathy from just long(years)has he been drinking?(i did read that other post).he has to stop at this point or things will become much worse for is he perhaps also suffering from some level of depression as well?getting him into see a good therepist to help dump the crap he is feeling really would also help tons.i HAD to see one as there were just way too many things with me and my son that were so completely out of my hands to even begin to try and control,i felt absolutely helpless.god its a horrible feeling.i am sure you know how that is raven.does this situation appear to be alcoholism to you?i know there are places on the net where you can take that ten question test that can give you an idea of just what the chances are that this IS a very real problem that needs intervention by someone more familiar with alcohol treatment.if there is a problem there it does need some intervention before other things start happening that would be much worse than what he is dealing with right now.if there is one thing i have learned since the day our son got sick in 99,just when you think things couldn't possibly become any worse than they already are,it can and it does.he just simply cannot drink anymore period.he is feeling the efects of this in a very profund way already ya know?if he stops right now,there could be some lessening of the pain and it would most definitely slow the progression of what he is currently dealing with and making it worse and more painful(and could help reverese the already present damage to his liver as well.the liver is much more forgiving than any other organ.but that depends on extent of present damage too). unfortunetly raven all you can do is give information,guidance,direction and all the love in the world to him,the rest is up to him.i wish you both the best of luck with this.please continue to keep us all posted on how things are going,believe me i do care about you two.Marcia