11 replies to this topic

[Braindead]

New to the forum and after reading some of your posts I am in the right place. I am not ( fully) paralyzed, but that is only a matter of time. Spinal cord injury was mised in Dx and Now told have Myelomalacia ( which sounds like a spring flower not a lethal condition). I have been progressively losing sensation and use of lower extremties ( Legs, Feet, Hips) Have had several episodes of Parastesia , Loss of leg usage and have been stranded ( had to carry me into the ER) . I have cervical C-6 Level Compression on cord and the MYelo..Lumbar is completely crushed as well as S-.... Hip is rotted out and needs replaced.
Pain,,,,Wow I am in constant pain..really does not matter if I stay in bed or try to do something productive. It flares to the point where I fear cardiac arrest.
I am having a great deal of difficukty dealing with the prospect of being para or quadra... though I suppose either would be preferable to the Cervical injury shutting done Breathing, or other manner of death. I was really considering suicide for quite some time...Now I figure this shit will kill me anyway might as well wait it out. I wonder if any of you struggled with accepting the inevitable loss of function and living activities. I keep on trying to do even the simplest things like cutting grass of lightly cleaning house, though I know the price will be a few days in bed and unbearable pain. But I keep trying to do them... In sanity?
I am aware from reading many of you had no time and the new life condition was immediate, for others like me it was a gradual a progression of medical ineptitude , combined with that smug Medical Professional arrogance and dismissive conduct towards us. How did you cope with the changes?
I may not make a lot of sense.. I would not find that odd. The strain of dealing with 24/7 Pain at 10+ Level has some mental consequences. But I wanted to post here. to let you know, Your sharing of stories and events, has given me a bit of new hope and a feling If "They" can Make it...maybe I can also.
Lastly on the Doctors: I read the one post about a friend receiving SSI and not being disabled..Wow that struck a cord.......!Same here- I recently watched a friend collect back pay and a monthly check on a fraud- He is plain lazy..But my claim was denied. Another friend was scamming the insurance for a auto accident- He is faking shoulder pain- we have the same Doctor...I am getting Ibuprofen HCD 5mg and flexiril.....with "Broken neck" and and an utterly destroyed lumbar. The Doc has him on 30 MG Oxycodone 6x's daily, along with a list of other meds...I have had to fight to get 5mg HCD 3 x's daily and they refuse to up it to 7.5 or 10mg... I even asked for a patch.. The Doc's response " those are high-powered opiate medications and we do not prescribe them" LOL what a F'n farce... I am half tempted to turn them into the DEA.
I am more of reader than a writer, more of an advocate than a patient... So, I may lurk and read the posts. Thank You so much for your open sharing and know that you have given at least this person- a days courage and a little bt of hope.

[goose]

Hello and welcome aboard. You've found the right place for answers and any help you may need. My experience with doctors is they really don't know very much about SCI. You'll learn to diagnose yourself better than most health professionals. A gradual onset had to be pretty scary by not knowing what was in store for each day.

Get ready to make new friends and learn about SCI along the way.

[hannibal]

Welcome to the site!

[Braindead]

Thank you!

[greybeard]

Hiya BD. Welcome.

[qbounce]

Welcome aboard BD, and might I suggest you get a new doctor.

[sherbs]

Welcome, X 2 what qbounce said !!

[Millard]

Welcome aboard. I have to agree with qbounce also. Many of us are on this board for a variety of reasons and most have considered the suicide route. I seriously considered it several times early into my injury but family and religion kept me from going in too deep. Progressive loss would be new to me as mine happened in about 5 seconds. I hope you can draw some strength from the people here. Anytime it gets too much, just get on here and start typing as we know what struggles you are having.

Good luck.

[Cathelena]

Hi and a big welcome. If your doctor doesnt understand SCI, which he sounds like he clearly doesnt, he should at least take advice from a spinal unit.

[Aparr]

Hey BD, I'm going to echo what everyone here has probably said,
Welcome to the forum! I'm glad you found us, and decided to come
In and join the gang!

[wheeliebear75]

Just joining in the choir; WELCOME , kick your Dr. to the curb & get a new one while you've still got the leg function to do it (+ it will feel more satisfying that way), & at least on the "brite side" you've got time to gradually learn & adapt vs. insta-gimp. And although we may not have the same cause I think it's safe to say a good majority of us have been down that DARK road......& hopefully our experiences will continue to help you. Hang in there....."it aint over til the fat lady sings".

[Tetracyclone]

It sounds like your doctors are braindead. Most initial SSI claims are rejected. Once I got with a local SSI clerk to talk face to face the application was approved very quickly. Just keep at it.