Seeking help in unique situation

Welcome faery

You've come to the right place, I'm glad you found us! First of all, that is some serious trauma you've gone through. What happened sucks but thankfully you're still alive!

What kinda digestive issues are you experiencing? What have people been saying to you?

Welcome faery,its a tough situation, we have all been there but its more frustrating when the support isnt adequate...Hopefully you will visit the forum and explain more to us and we can understand whats going on better and offer advice

That was some fall. Comment away faery.

Thank you all for the support...I didn't mean to disappear after my post....Ended up in the ER as my left foot swelled and pitted due to pulmonary edema. I am ok now. I had twisted my ankle while doing exercises at home. Since I couldn't feel it, I didn't know at the time.

My left leg is still paralyzed. My right leg has enough strength now that I can "walk" short distances with a walker, and AFO and knee brace. My chair is still my primary source of movement. I must comment, I love my chair and am fortunate to have wonderful insurance. It's a tilite, titanium, custom built, and I have a roho quad cushion due to lack of hiney tissue. I am only 5'2 and weigh 115#.

Bowel issues: My stools are loose, as in mostly diarrhea. I lack muscle control so when I have to go, I have to go NOW! It hits hard and fast. I get awful stomach cramps and I have seconds to get to the toilet. I have had accidents in public and keep a bag with extra pants and undies in the car. I am only on Gabapentin for meds, 1200mg 3X daily.

That leads to nerve pain. I broke 15% of the bones in my body. That was nothing compared to the debilitating nerve pain. I am maxed out on nerve meds, plus I hate meds. I have tried everything to relieve the pain....Ice, heat, creams, herbs... The nerve pain is not daily and there seems to be no indicator of when it hits. I keep a pain journal and have not found a pattern. When it hits, it's like being shocked with electricity. (I am an electrician by trade...I am currently not working). It hits hard and fast, then goes away. It comes in waves and I just want to scream!

As for rude comments: "You look like a gorilla"....Yeah, my arms are hugely disproportionate now due to using a chair and not my legs. My triceps bulge. "Were you pushed"...How rude! "Did you jump?"...Anyone who knows me, even now, have a happy disposition and being suicidal is not an issue.... "How much alcohol did you have to drink?" What the?....The gyst is, people want the gorey details of how/why I fell. Truth is, I don't know! I stepped out to smoke (we were at a hotel). My husband went to shower and shave. We think I tried to sit on the balcony wall and fell back. I don't remember! Fortunately, there was a witness to the fall, a woman who also went out on her balcony and called 911. According to the police report, I kept saying (somehow, with a punctured lung) "where's Kevin, I want my Kevin" so they were able to track the hotel records for a Kevin. Poor man steps out of the bathroom and there are cops, guns drawn in the room, and I am gone. I have been asked about my toileting, about how I shower, and other things. When it comes from someone sincere, or a friend, it doesn't bother me. But these questions come from random strangers and are irritating.

Or, the jabs at Kevin. We recently were at a town picnic. I wheeled myself to a picnic table. Going back was uphill and in rough grass. A man told Kevin "why aren't you pushing her?" Here he is, arms full carrying our plates of food, and this man is chastising him. One of my chair customizations was folding push handles. Because I am little, everyone wants to "help"...I am very independent, stubborn and determined. If/when I need help, I ask. Otherwise, it may be tough, but I do it! It irked me that man judged my husband negatively. I thought that society had come a long way in understanding those with disabilities? Obviously not. My folding push handles help 1) not poking my seat when I drive and disassemble the chair and 2) people not just coming up and pushing me without asking (this has happened!).

I feel I am rambling now. I appreciate this is a safe site, so please, feel free to ask me questions. I greatly appreciate any support and assistance provided. I am so lost with where to go to ask the questions and get the help I need.

Thank you!

www.ibew.org/media-center/Articles/15Daily/1504/150409_heart

www.ruralmessenger.com/blogs/simple-country-wedding-actually-miraculous-most-inspirational-affair/

Some stories about me, if interested....Like any media, not all is accurate

Thank you Whiteangel. I am in US, have really great insurance, am on meds (Gabapentin) for nerve pain, and had a complete annual physical which includes providing stool samples. However, those tests only concern colon cancer screenings, not "why does a para have loose stools"....My bowels have been loose for a year now! Rather irritating...Mentally and physically.

I don't think I am menopausal....I am only 38 years old. My mom didn't go thru it til her mid 50's, if heredity is an indicator.

Everyone keeps mentioning Lyrica....I am on Gabapentin and am maxed out. Hence, my earlier post about Q's to ask my doc, would I benefit from switching?

Um, not sure what I just did....I apologize for the inconvenience! I am not tech savvy and am bumbling along...Thank you for your patience with me.