66 replies to this topic

[S&W Winger]

How did I miss this thread? ...and then I say something witty or dim-witty or useful or useless or heartening or insulting or something...McWriter and hubby, you are in fine company here...I was in a room with 160 women, many of whom I know, for 2 1/2 hours last night and felt more alone than five minutes in cyberspace on this forum...hugs to both of you...

[isobar]

Hi,







A friend of mine went to the hospital to have surgery done it wasn't sci related all his limbs worked normally. When the surgery was done he had no use of his legs.... he was told by  the doctors during surgery he had a stroke or something he was devastated and fell into  a deep depression. He did seek help and went to see a psychiatrist it did him no good... all he did was lay in bed and cry feeling sorry for himself. One day his brother came to see him still in bed and feeling down. His brother got very angry and bluntly said.... Dame how come every MF--kin time i come to see you.. you're in this F--kin bed get the F--k up. He replied i cant ... his brother said lets F--kin see. He helped his brother get out of bed and into his wheel chair then they went over to the mantelpiece  his brother said now try and stand up dont worry i'm here with you.... he tried and stood up on his own and hasn't looked back since. Yes his brother used foul language and a harsh tone but it got the down brother up on his feet. He needed that tough love to get him where he needed to be. Everyone that's tough on you aint your enemy and everyone easy on you aint your friend. Sometimes we need a little of both.... each with good intention in its own way. Look at it this way people were honest with you... letting you know what they thought would help you there's caring in that dont you think. Although some stern and others not so stern. I'm not living with your degree of pain so i dont know its fury or what you're enduring but i hope you can find a way to escape its grasp. I thought i read in your post that you have arthritis also.... i saw a segment on PBS about people doing yoga with positive results against arthritis' hold on their lives. Excuse me if i'm mistaken about the arthritis from what i read in your post you definitely dont need it too. When you read this.. the first part is an example of how tough love helped him.... its not an attack or comparison to you just something for you to think about since you weighed leaving the site i really  think you should stay. Take care for now.

[nipper123]

mcwriter, on 26 September 2010 - 04:39 AM, said:

Not sure if I should nose in here, but I know he and I both have communicated with several people on here who are aware of his condition. I didn't realize that he still hadn't filled in his "About Me" tab, but I will remind him. The following is the best sequence of events as I can recall at the moment...

His injury happened 1994 when he was a nurse, lifting a 350 lb. double amputee patient with a transport person onto a gurney. The transport person let go leaving Roy extended across the bed holding the full weight of the patient so he wouldn't fall on the floor. He basically blew out a few disks for which they said after a diskectomy he would be back to work in 6 weeks. Yeah, right.

The doctor who did that one also did a laminectomy, (apparently just because he felt like it while he was in there) leaving bone pieces inside. The next surgery was to remove those. The next surgery was for a fusion and to add hardware. The next surgery was to remove the hardware and also somewhere in there a bone stimulator for the fusion. there were I think 7 or 8 surgeries altogether.

Meanwhile, during one of the surgeries with the hardware he got an infection. It was nearly a year of heavy-duty antibiotics one after another and in combo not to mention the good ol' central line that infiltrated when by chance one of the areas of the infection burst. Roy, having the clarity of mind at that moment, caught a sample and we took it to the doctor who had to send it off to several places for identification which finally ended up at an infectious disease center in Texas that finally identified it as mycobacterium fortuitum which is a tuberculosis "like" sneaky thing. It finally went dormant, but there is nothing to kill it, and it could still pop up again at any time and none of the previously tried antibiotics will touch it now. Hence, doctors have refused further surgeries because of the risk he wouldn't survive if the mycobacterium fortuitum decides to rear it's ugly head once again. We have found out recently that he is now allergic to two of the antibiotics he took for that. Great.

In addition to that the bone stimulator also really did a neat job in narrowing nerve passageways which has resulted, for example, where the sciatic nerves pass through should be about the diameter of a man's thumb, where Roy's openings are the size of less than half of a dime, so the nerves are in a state of constant inflammation. Bending at the waist is horrible, his legs and feet are in constant pain except for the outsides of his feet which are numb. His doctors actually nixed on much physical therapy after a while as pain worsened because therapy exacerbated everything. He gets all those lovely sensations you all describe in his hips and legs, the dog-bites, stabbing, burning, tingling or his legs will go numb.

So, his condition went from actually not too bad with a vicodin or two, to over the years it has worsened so considerably that sitting upright in a chair for more than 15 or 20 minutes has to be darnwell worth the reason, for the added pain he suffers afterwards, not to mention walking which started out not too bad in the beginning for short distances, but now his balance sucks, he uses a cane and just going through the house the short distance to the bathroom is a scary undertaking. On rare occasion when we do go somewhere that might require some distance, he has a scooter. Shorter distances he just leans his other hands on one of us. Of course, his knees will give out at random, so there's that.

He has bowel issues, and we did finally figure out with a double dose of Generlac solution and he can actually poop though it is not as frequent as we would like. Diverticulitis doesn't help that matter. He has spasms very frequently, all over his body, if he is touched while sleeping or just some good ol' full body spasms, which are a whole other ballgame. He was borderline on the sleep study, they didn't think the machine would help. He can't sleep for more than a couple of hours at a time. His pain is in the lower lumbars, sacrum and hips and then all the way to his feet, his nerves feel like ropes in his legs and he has lost really a lot of muscle in his legs, even though he writhes or twitches alot. He does try to do some exercises in bed.

Anytime he does leave the house, which is not often, the recovery period for that little activity takes a minimum of several hours to a good two days or so for him to recover. And I'm talking just going out to one small store or even just a ride in the van. Just taking a shower with help and he has to recover for a few hours from the activity and sitting up in his showerchair. His doctor's office is very good about not making him wait in the waiting room very long, they get him to a room pretty quickly so he can lay down.

Besides all of that, he has heart issues, and Type 2 diabetes that run in his family. And his immune system generally sucks. If the kids or I have a 24hr cold or flu, he gets it for a good two weeks. A neighbor kid comes in our house and coughs or sneezes, and Roy's got it for a week. His immune system has never been the same since the infection.

Yes, I know about the cigarettes. He has smoked for over 30 years. Got him to use the patches, and he came pretty close to quitting, but a longer program probably would've worked better. The cola? I know, he grew up on it. I haven't given up on those. But here's the dilemma...He has so few pleasures at all. I know it's stupid, but how can I 'make' him quit smoking and drinking the cola? We've been through the health discussions over and over....What he really needs is a sense of purpose, something to do to use his brain, but then tiredness and pain take over. A feeling of purpose, I believe would lift his spirits, and I think then he could follow through with more healthful choices. His entire life he has always served others in healthcare and now he thinks he can't. Ideas?

Maybe this is a better picture of what Roy skipped telling you about. It's my version anyway...he's not a very good typist-ha. Anyway, like he said, he is in a down-trend right now and I do get to the point where I know I don't have the answers so I follow him right down into the black hole because I can't fix it. Then we try to help each other climb back up.

I guess let me know if anything was unclear. Thanks.

[mcwriter]

Gosh,I didn't see a comment, nipper, just a heart at the top?

[qbounce]

mcwriter, on 12 October 2010 - 09:13 PM, said:

Gosh,I didn't see a comment, nipper, just a heart at the top?

Wow, good eye!! I missed that.

[zena]

My son has now been in Uk rehab for nrly 3 weeks and hes being very quiet. I think some of the older patients think hes feeling sorry for himself and maybe he is. Is that wrong?
He has been in a trauma unit since May knowing he won't walk again but I am guessing now hes in rehab its staring him in the face.
I know it's different to what Roy was first writing about and living with pain is a terrible thing even a toothache for an hour is a nightmare when you are enduring it. And Feeling alone is a sad place to be too we are allowed to feel all these things because we are human and we can talk to each other about things and feelings too.
I feel bloody angry that my son had this accident and I want to rip peoples heads off and I wish I could change places with him but nobody else wants to hear me say all this that's why i have joined this site so i can have an odd rant and nobody has to listen or sometimes i'm lucky and people are listening.
I don't know whether we are allowed to suggest cannabis as a form of pain relief but i know many people in the UK do use it as a medicine.

[dangerousdave]

Personaly , cannabis does nothing for my pain but is a great muscel relaxant, which does help with pain, if you get my drift.
Dont smoke - vaporise