Seeking help in unique situation

That's excellent news faery, I'm glad to hear that! The pain is always the worse part but we can't let it stop us from working towards recovery. You keep doing what you're doing and you'll definitely get closer to being your "normal" self again.

You're welcome by the way, we're all happy to have you here

faery, you are doing great! It is late tonight, so just going to hit on a few things from your posts.

Thanks for sharing so much. It helps when sharing back to have a better understanding of who you are writing to. I can relate to you since I worked as a lineman/comm-tech for Comcast, and share your bent for technical work of a physical nature. Before paralysis I had "gorilla" upper body from climbing poles, and lesions in cervical spine have changed that some. However, be thankful for all the strength you have because you can utilize it to move better, as you already have.

Fortunately you have good insurance! What a blessing when you have serious health challenges... Great that you have a TiLite titanium chair and cushion that works for you, and that you appreciate these tools! I utilize a combination of mobility aids, and this allows me to get upright time as well as manage pain by switching to what works best. Preserving joints and changing what parts of body are stressed is part of taking care of yourself now, so you will be good for the long life ahead of you.

Bowel and bladder issues are the curse all of us bear, as well as how it makes you feel about yourself. There is thorough info in this forum to learn how to manage, but it really takes time to figure out what works. Eating healthy foods on a regular schedule, developing a bowel program (for more predictable patterns of elimination), and having a sense of humor about it are key to muddling through. S*** happens, but no one actually ever died of embarrassment! We all have our horror stories. Finding foods that constipate a bit may help in your case. Most on this forum probably deal more with constipation than loose stools, but I am in your situation. Inulin, a fiber suppplement that creates bulk, helped me a bit. It mixes easily into yogurt or a juice, no real flavor to it. Some medications have constipating effect, noticeably opiates. If they help with some of your pain, rotating a variety of these (so they remain effective without increasing dose), may help thicken up your stools. Opiates are not very helpful for nerve pain, however. I also have fairly constant nerve pain, and get nausea from opiates so cannot take them, therefore not saying from personal experience. But after knee surgery, I took opiates and my stool turned to stones!  Using very light dose of opiate for this effect with your doctor's management has really helped many, and is better than using anti-diarrheal continually, which alters intestinal function over time.

I have taken both gabapentin and Lyrica for nerve pain. For me, the benefit of at least significant (not complete) pain mitigation was overshadowed by increased brain fog--my disease has already caused cognitive impairment, so this was not acceptable to me. Lyrica is far more effective, but you will have to monitor food intake because weight gain is recognized side effect if you don't. There is no perfect answer on nerve pain, but you will probably discover certain workarounds by accident as you are moving forward. A supplement, R-alpha lipoic acid, can help with nerve pain.  I found by experimenting with dosage that too little does nothing, too much causes hypersensitivity, and the right dose helps about as much as gabapentin, without any side effects.  Does your nerve pain cause spasms? Sounds as if yes, those "electrical" jolts. For me, low dose baclofen has really helped that! It is a specialized antispasmodic. I thought at one point I no longer needed it, and stopped taking--nerve pain and jolts returned with a vengeance, so got back on baclofen probably for the rest of my life! At 10mg twice a day (most people start at 10mg 3X daily), no real side effects and no need to increase dose. You would have to experiment to find out what works, but keeping dose low enough that soporific side effect was not problem.  Not a pain med, but makes a real reduction in my pain.

I'm no marriage counselor, but what you shared made me feel your emotional pain. Whiteangel suggested asking for help with simple personal grooming, such as shaving legs--and maybe using emery paper stuff (can't remember what it is called) or exfolliating cream would mean not having to do it as often, as these soften the ends of the hairs so they are not bristly. Body image changes when you have serious injury and especially surrounding B&B problems. Loss of muscle tone in tummy, thinner legs (this may improve for you with time), pressure sores (do everything to avoid entirely), injuries from loss of sensation, changes in sexual function--none of these improve body image. You're still young, so wait till age really changes your body image!!!!  Your husband chose to stand by you, loved your feminine fitness before the fall (those making derogatory remarks are undoubtedly jealous!), and surely admires your grit and determination to overcome this life-changing event for both of you.  So it is imperative for your relationship that you address head-on the effects of loss of confidence in your body.  Key is communication with him.  He will want to help you, and you want build with him a strong foundation of physical intimacy.  It will not be the same as before, but can be very rewarding.  Fortunately, men seem to have less of a sense of gross when the unthinkable happens (B&B accident during sex).  Talk about it---facing the worst, putting things into perspective, a little "black" humor,  etc.  What is worse, and destructive, is not sharing, allowing your fears to preclude what may not even be a problem.  Think first of his needs, depend on him (trust!) to understand, tell him how much you want to be there for him and ask him to help you succeed.  Seeing how beautiful you are, in body and in spirit, I think you need to boldly go where you have never gone before, in a sense of adventure with him--this could become the cornerstone of a way of life in general that would be pretty terrific.  He sounds like a great husband, and you both have the support of a caring and giving community.  Be bold!  And express your love and respect for him frequently in a variety of ways.

Gotta get to bed...hope these thoughts are helpful. 

faery, Yeah, it's late again but pain is keeping me awake and I saw your post. Here's what I can offer in this condition...

You are making very encouraging physical progress!!!   Normal walk speed is 4mph, so if you are doing less than half that with your injuries, that is phenomenally great.  So it seems that good insurance is getting you the therapies you need, priceless. Your working hard toward recovery is what is going to get you ahead to realize the max that is possible. Can't say enough "Hurray for you"!

About sex, obviously a serious concern:
"Bad" sex is better than no sex? Probably so, for a guy--so worth the effort of pushing yourself to try. For you as a woman (maybe this is also true for men?), your brain is the most important factor in better sex, or sex at all. Fortunately, you do not mention traumatic brain injury as part of your fall, but there is almost always psychological damage when one has been through such a huge physical trauma as you have.  Getting counseling to help cope is better than denial, although finding the right counselor can be a challenge.  There are so many options to help with the very real problems of performance fear, pain, and "oops, crap".  Spontaneity takes a hit for us with these concerns, but preparing and planning can result in satisfying intimacy for you and your husband.

Performance fear is a killer of relationships.  Support your man with respect, trust, and act in faith that he will receive your best effort with joy and appreciation.  Let him cherish you, and be available.  It's not all about the big "O", but about communication, learning what you can to pleasure the one you love, and having a sense of humor when stuff goes awry or isn't always consistent.  Every couple faces this to some extent.  Good article, especially last paragraph, at www.webmd.com/sex-relationships/features/disabled-still-have-sex-lives.

Body image for a para:  saggy gut is the new normal, as are thin legs and more muscular arms.  Wait till you get lumpy and have wrinkles and the stuff that grows on skin as you age...  Find ways to dress that flatter, and when undressed, low lighting (or dark)?!   Be so thankful that your husband desires you, and surely don't argue with him over how you look, even as an act of insecurity!!!!

You won't know about pain until you try, seriously.  Some preconceptions of what "should" be may have to go by the wayside, to accommodate fragility of bones, neuro hypersensitivity, spasms, etc.  This is where your sense of adventure can be a plus, use your imagination!  If you encounter pain, then try to figure out what triggered it and avoid, and find alternatives.  Maybe even some mind-altering med?  I'm not suggesting illegal drugs, for safety and moral reasons, but rather a pain med like Tramadol or anti-anxiety med used occasionally to allow you to enjoy physical intimacy with less fear, and maybe a bit less trepidation.  Finding a doctor to work with you on this may be tricky...but they are there, even a psychiatrist who is an MD and can prescribe. 

What you describe in your bowel management does not sound like IBS to me, but rather a complex neurogenic bowel.  I really feel for you in this, because I am living the nightmare, too.  Your birthday experience, all too familiar, and after close to 7 years I still cannot help but be disgusted and disheartened when these bowel mishaps occur.  And anxiety over the possibility is almost as devastating as the reality.  Something you may want to consider, with your husband helping you research the choice, is a colostomy.  For many with uncontrollable bowels, it is a life-saver.  Fecal matter in a bag can be easier to manage than in the bed, running down your legs, in the carpet at a friend's house, etc.  Your injury may be too new to even consider this surgical option, but for most it allows a far more enjoyable sexual experience.  First, of course, your doctors would have to validate it as a safe (i.e., greater benefit than risk) option for you medically.  Probably no one has brought this up to you, which is why I am mentioning it.  There is great information on this forum concerning what the surgery entails, and there are also forums for those with colostomies that would give you a complete picture of what to expect.  There are even "clothes" for the bag to make a fashion statement in intimate settings!

I admire your spunk and effort toward recovery, so that is why I wnat to encourage you. Keep at it, girl!