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fucking dying tonight

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    #31
    Many thanks to David Berg, SCI, and the others who suggested possible sources for silk shirts. Got a bit of sticker shock with Tommy Bahama, they wanted $150 dollars for one shirt. David's source was much cheaper and presumably the same material. For people who can't wear clothing, we sure have to spend a lot of money on clothes.
    Last edited by dejerine; 15 Sep 2014, 4:19 AM.

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      #32
      Dejerine, sent you a PM

      ket

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        #33
        Ket..yes i read that when you first wrote that may of 2013.. is good read and appreciate they insight...
        question about the burning tongue... could that be caused by the meds taken , they all will wreck a person gut and cause candida which can make neuropathic problems worse including burning tongue...?

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          #34
          i just spent a day of hell with this neuro crap pain... draining...

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            #35
            Originally posted by dejerine View Post
            Many thanks to David, SCI and the others who suggested possible sources for silk shirts. Got a bit of sticker shock with Tommy Bahama, they wanted $150 dollars for one shirt. David's source was much cheaper and presumably the same material. For people who can't wear clothing, we sure have to spend a lot of money on clothes.
            If you keep an eye on different places that sell Tommy Bahama mens sports shirts you can locate sales of the $150 ones for $65 every couple of months. I found WinterSilks.com when I was still an AB cross country skier. Their prices are in line with a product that lasts! That they sell ultralight weights through heavy for extreme cold and have both male and female colors and sizes helps. For me, my skin wants smooth knit cottons or well washed cotton denim. I found Territory Ahead online and after spending $90 on a mens pull over hoodie that was all cotton and lined in an even smoother cotton jersey I pounced and bought two more when they went on sale for $40. They have a good selection of pull on pants that many men could wear to work too. I keep an eye on their sales. If you like the baja style pullovers for layering warmth they go on sale regularly too.

            And yes, we just got our first blast of cold and I ache. I'll be ordering a new microwave heat pack this week.
            Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

            Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

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              #36
              speaking of wearing clothes... that has been todays challenge ... not working out so well for me today..pain level is high today... I must of gotten dressed 8 times today...

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                #37
                Pain off the scale

                Originally posted by ketamine kitty View Post
                Pain off the scale, spasms, fucking tears rolling down my face puking from the pain.

                Is it too fucking much to ask for/ get just a break for a couple fucking days.

                Think i hit 14 years in August. I can't even remember a day that has not been torture

                had to vent, feel like I'm losing it. so fucking tired, and just fucking agony.

                Sorry for my fucking appaling language. Was it Betheny who coined

                Fuckity fuck fuck fuck

                a hairwidth away from the oblivion of 100ml of demerol. but fucking pay a price for that too

                FUCK

                ket
                c-5-6 complete, good health, hardly a cold in 49 years, or in the last 27 injured, can count the bladder infections on 1 hand, no bed sores, a few burns duh...

                going on 27 years in hell from waist down, ass, legs, feet, fire... can rarely get out of bed anymore...

                I coulda bought a new van with all the lyrica my insurance didn't cover, only to read last December [3 months ago] it failed stage 3 trials for neuropathic, deafferent, Dysesthesia, cp spell it call it what the f ever you want, you got it ffffucccccckkkk...

                I wrote a post a yrs., back regarding lyrica, followed it a few months ago saying it probably wasn't helping, I knew b4 they did, or did I?

                going in for mri re; syringal cyst in a few days, it's been there as long as I've been hurt and on fire.

                does anyone know if laminectomy / shunt will help with pain? doc at shepherd center said it could make things worse, if I read this thread right, your whole body is on fire? I'd say that's worse then my half, so sorry and God Bless...

                can anyone please point me to someone who's laminectomy / shunt cyst relieved suffering?. ty all, and God Bless, he must be there cause hell's here...
                ts

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                  #38
                  I tried Lyrica for about a year and half DID NOTHING. When I was asked to try gabbapentin, basically the same chemically, it worked not perfect, but it worked. And gabbapentin is a generic med, and much cheaper, my script insurance covers it 100%. I stopped using some of the pain killers after a surgery fusing several of my cervical spines, that created a lot of relief as well. but my lumbar spine is a mess as well, (not to be too technical). But my spasticity seemed to go away with opioids and the fire has abated some since I have been in the chair, there is just no getting comfortable. But since I have stopped taking the opioids, (now) there is not much difference, with or without, except what I perceive as a clear head without.

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                    #39
                    thx, Neurontin nada...I think I waited so long for lyrica to be approved for pain, when I finally got it, '07, 8? it was more psychological my thinking it helped...I always worked up to max, then completely off meds to do my own trials, same w/ lyrica, I finally concluded, b4 study failed, it was the most expensive sleeping pill [see post in 2014], not that I ever took them...I have tried everything over the yrs., nothing helps neuropathy, especially not opiates... for muscular skeletal I'm sure, but central pain, nope...

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                      #40
                      ''I finally concluded, b4 study failed'' you'd think my doc or pharmacist would have said ''you've been wasting your money for 7-8 years'' only reason I know is I watch cnbc...

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                        #41
                        Ketamine sorry your in pain. I know how incredibly miserable you must feel. I am T-10 incomplete para post 24 years. Chronic pain also. I don't know much about Neuro Pain but want to add my 2 cents. As others have mentioned gabbapentin helped me a little but wasn't worth it. My pain got so bad told Dr. needs to do something or I am going to take myself out can't live like this. Over 3 years ago started going to valley pain consultants in phx az. Took me almost 2 years before I finally got any releif. Finally what helped is they had to administer Hydromorphone (dilaudid ) directly into my baclofen pump. So served a dual purpose baclofen for my spasms and hydromophone for my pain. Catheter goes directly to my spine low doses so you get a full affect. I know that's extreme. I am just not sure if this is something that might help or you might want to talk to your Dr. about. I wish you luck and will pray for some relief for you.

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                          #42
                          Originally posted by nmireles View Post
                          Ketamine sorry your in pain.
                          Note that Ketamine Kitty has not posted on this thread in 2 years...

                          (KLD)
                          The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

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                            #43
                            oh duh should have paid attention thanks Nurse.

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                              #44
                              nimireles, here's what he's been up to- http:///forum/showthread.php?252551-...65#post1790765

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                                #45
                                maybe it was bethany. I think it might have been me though.
                                I know obione liked to fuckity fuck fuck fuck when things got chitty. sorry you're
                                having a rough time.

                                I might finally have an answer for myself.

                                its not so good. lymphoma. not sure what kind.
                                since I used to be on pain meds, every doctor I see looks at my chart and thinks I just want pain meds. i havn't asked for any pain medicine. the pain and illness are incredible. I should have some relief. its inhumane to suffer like this.

                                when it comes to pain, you are the only one who really knows how heavy it is.

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