2 replies to this topic

[rescue me]

Hi

I am so glad I found this forum. My husband has an advanced form of spinal stenosis, this condition results from narrowing of the spinal cord, causing nerve pinching, which in turn leads to extreme pain, limping & lack of feeling in the lower extremities, with the likeliness of lower paralysis over time. The discs are degenerating , causing the vertebrae to close in on the spinal cord itself. The second condition is ankylosing spondylitis this causes inflammation in the vertebrae that result in severe chronic pain, the inflammation can lead to new bone formation on the spine, causing the vertebrae to fuse in a fixed immobile position. There is no cure for either disease, he is in intolerable pain 24/7 really doesn't sleep at all, has trouble standing, walking & takes mass amounts of vicodin daily. He has been permanently disabled for 3 years now. Was diagnosed 8 years ago & is 36 now. The doctors believe he was born with this due to the progression. I'm afraid even if he were to become paralyzed at some point he would still be in constant pain because this runs through out his entire spine. We have tried many procedures including acupuncture, steroid injections, & most recently vax-d (spinal decompression) with no results. This has been like a complete nightmare turning our lives completely upside down We also have a 5 year old daughter who has been our saving grace. We had to sell our home move upstairs from family. We are just getting by, disability doesn't pay much & medicare doesn't cover much so I needed to add him to my health insurance which is very expensive. I am overwhelmed & have no one to really talk to, because I know of no one going through anything even remotely like this. What is extremely frustrating is some friends & family don't see how crushing & relentless this is because he isn't in a wheelchair or complains about this. This is a vicious cycle where his body never gets a break because he can't lie in any position for very long & the pain keeps him up so he never really sleeps. He is now a full blow addict for taking vicodin for 8 years now. I feel extremely helpless because I can't do anything for him. I will be going to massage school soon so I can help him somewhat & others in chronic pain. Trying to support a a family on less than 30k is a joke. Just looking for maybe some other alternatives to his pain mgmt & general support.
Thanks
Rescue Me

[meldav]

Hi there,
i,m new here too, this is my 1st post - i cant belive no-one has said 'hi' to you ?

so, 'hi' !! i,m in a very simalsr position to you only im the disabled one! mother to 4 children, 34yrs old, disablility happened 4 years ago, my husband is now my full time carer,he had to give up work, and we are only just surviving on beneits too (UK benefits) this were VERY bad for the 1st yea rwhen he had to leave work but after then things (finacially) started to settle down.v thank goodness!

Our lives have completely changed due to my disability...
work/home/friends/sex/money/even what clothes and shoes im able (or not) to wear.
i so feel for you and your partner - i really do know where your coming from,
hang inthere things WILL slowly settle down, and you WILL get through this together,

i wish you allthe very best,
if you'd like to chat - please email me... mel xx

[Quad65]

I don't know that I can offer any concrete advice or help. I'm a long-term SCI and have been married almost 30 years. Unfortunately, spouses/SO's of SCIs sometimes have it almost as tough as the injured party.
It is an unrelenting daily grind. You have questions, you want to help, but feel helpless and uninformed. You feel angry, resentful, guilty, trapped, and helpless. It's normal and understandable and you should not feel shame or guilt because of those feelings. You are taking an important step and reaching out for help.

I would urge you to investigate resources in your area to help you. Is their a rehab center near you that you can contact for advice? Maybe your county Human Services Dept. has some referrals available. Perhaps you state medical society/board. Or major hospitals. There may be drug counseling services or agencies that can help.

It can be time consuming and discouraging slogging through the layers of bureaucracy and being transferred from agency to agency. Don't try to do it all by yourself. Get the rest of the family involved, too. They need to be educated and informed of his problems and can and should do whatever they can to help. SCI, whatever its forms, is a family problem. They can help either financially, finding information and resources, respite care, or whatever else to help BOTH of you deal with this. It is unfair and unrealistic that everything falls on you.

You are as much a victim of his disease/condition as he is. And you need help and understanding, too.
Sometimes it's hard to ask, but the squeaky wheel gets the grease.