Coming to terms with SCI

Wavewolf,

Please ask for more help. Makes me angry to hear your work situation. My wife and I have been trying to firgure out what instrument you play. We have ruled out base and cello. She played violin in her highschool orchestra, she was principle second, whatever that means:) If I tell people she plays the fiddle she grumbles under her breath.

Back to the topic of comming to term with SCI, I have to say I probably haven't. I understand the steps of the greiving process but seemed to have skipped most of it. I've been told by some I'm in denial, have PTSD, etc., and I don't agree. I have a 5yr. old and between her and my wife taking graduate courses for her masters, trying to keep up with my workouts, new house  and chickens, I felt I would deal with my head when things calmed down.  Three years tomorrow, and things haven't slowed.  Life is good:)

wavewolf, that sounds like a tough situation as well but it's good to see you're holding up well. It's also great to hear that you're seeing improvements 4.5 years post! As for the risk further paralyses, is there no precautions you can take to prevent it? I'm always surprised whenever I hear about new diseases. Infections, etc. I would have never thought there were so many and how serious and complicated they are if it weren't for my injury. When people see me/us they might just think "oh he can't move his legs" but in reality there is so much more than that and I wish people were more aware of it.

DJ and Mark,
Thanks for feedback!  Since my health crisis, I too have become aware of the extent of previously unrecognized suffering around me.  When we are healthy and busy with life, we don't imagine how different it can be.  Throughout my life I have had friends with disabilities, but still could not imagine the difficulties and anxieties they bore without sharing, probably afraid of rejection.  When ABs who are friends of SCIs join a group like this, or someone with other conditions that have related life-management issues, we all learn from each other. 

DJ, it is pretty amazing to still see some improvements!  Finding the right sorts of physical therapy and exercise has been a trial and error process, but reaped great reward.  Sometimes it's hard to tell if there is really neuro improvement or I am just able to better utilize the ability I have.  Building confidence by stretching the limits a bit is a strong part of my personality!  What keeps me humble is dealing with B&B...  I try to eat healthy foods, get enough rest, manage stress, and pace myself--all part of maximizing what I have physically.  The treatment for my disease is basically managing symptoms--nothing seems preventative/protective, and it is very unpredictable since sarcoidosis manifests very differently in each person and responses to treatment are likewise individual.  I am about to start a new drug because my disease has spread to bones, and resulting pain has increased fatigue to the point of really limiting me.  When doctors warn that the treatment is as life-threatening as the disease, it doesn't give me warm fuzzies.  Fortunately we have the internet to learn about the choices we must make.  And I think that active and informed participation in treatment decisions is critical--we have the most to gain or lose.

Mark, fortunately you do have your wife and daughter!  A supportive mate is one of the greatest blessings in life, and children keep us focused on endless possibility.  Children also accept us as we are, very special part of their nature.  I'm not really so strong, just that I must be independent to carry on.  I do have some wonderful friends helping me, and being there in person when really needed.  Not least, I have a great team of very caring doctors also.

Oh i don't want to sound negative but it took me nearly 3 years to come to accept my condition,  sometimes there are triggers that bring about sadnes but hopefully they are dwindling away. i Remember being taken to a marathon race  3 months post injury and pushed all the way. It was a kind gesture  but  awfull seeing everyone running. I had three work mates i used to contract with in building services, still friends but i'm not directly involved any more. anyway.
I have three major issues which have effected my lifestyle.
walking/standing
Bowel baldder
Sexual function

Being able to walk is the biggest issue, bowel, bladder i think i can deal with.
Sexual function, never knew it could hit me so hard, not after passing 40 and having a child. but its more about feeling good and making the feeling good of my partner now.

anyway i see it this way, the greatest ability of mankind is to adapt , if not the dinosaurs would still be with us.