Hello from Connecticut! I usually participate in the Web MD Pain Management Community. I have my, "About Me" story published there which I'll copy and paste on this community, too.
I have had seven back surgeries- two fusions (a three-level cervical and two-level lumbar), for the past three years I've had a St Jude's neuromodulator (SCS) that I love. It helps so much, but does not come close to making me pain free.
I've been reading discussions and posts on this community for quite a while, but seldom write.
I thought it would be nice to introduce myself and get involved.
Although I love the other community, there are so many persons whose pathology is so different than mine. I like to hear from other persons with spinal cord injuries. Not that I have anything against the "fibro-folks", (persons with fibromyalgia), but there of late seem to be so many more of them on the community than there are people like I am.
I hope this is a fair assessment.
I am middle aged, live in Connecticut, have four children and a partner named Kevin who has stood by me through tons of crap.
Please be assured that I have nothing against the fibromyalgia patients. I just have little in common with them.
Hi Joy. We have so much in common it's remarkable. We're even the same age. I'll have to post a pic of me and Kevin, too.
I've forgotten: At what level is your fusion? I have a C4-5, C5-6, C6-7 and a L4-5, L5-S1. My cervical healed fine, but this is not to say that I have no residual pain in my neck and shoulders as I certainly do.
The lumbar levels entitled me to the mis-fortunate diagnosis I share with you: FBS. You may have read in "My Story", that I had to fight worker's comp for many, many months to get the surgery I badly needed. The neurological damage from all of the compression over all of that time is permanent.
I do not tolerate a heating pad, but we have a Jacuzzi and I could live in it.
Do you have either a temperpaedic (?sp) or sleep number bed?
We are sleeping on a Stearns and Foster, "Orthopaedic Extra-Firm". Kevin (who was working internationally and just came home on 24 Feb this year) does not like it at all. I guess for a "normal" person it is like sleeping on a Fred and Wilma Flintstone bed. We have to make a decision soon or he'll be sleeping on the sofa and I will not have any of THAT, Haha. He's just home from eight months away, so...
Do you think it would be a worthy thought to post a poll regarding, Temperpaedic vs Sleep Number? I do currently have one on the pain management community, but not everyone there is living with spine damage. A lot of the fibro-folks like the temperpaedic's softness which is a no-nay-never for me.
Have a nice evening. I'm showing my greyhound tomorrow so I'll be to bed early. CTBView Thread
Haha, We watched "Devil". It was stupid- the one with the people trapped in the elevator, right?
Grandchildren? I thought you were a young Mum. May I ask how old you are. If you mind, then don't answer.
As I wrote: I have three sons and one daughter. Kevin had only one son, Jordan, who died tragically this past Sept 4 (2010). He and my daughter were VERY, VERY close and we had high hope for a grandchild that would be both of ours biologically. Yes, it was unusual that a middle-aged couple's son and daughter would be dating. They were just like mini-me and mini Kev.
All of our lives have been devastated by Jordan's untimely passing.
TTYL. I have so much to do and am in so much pain. I wish that I could go back to bed and have a nice, long nap~
I'm also disabled on SSDI, but I would so love to try to go back to work. My income is Workers Comp, but also have Medicare. I do a little volunteer work with my greyhound who is a therapy dog (and an angel <3). We go to a local nursing home and bring love and a little happiness to some lonely people.
I've been to Missouri. The Midwest is beautiful, but I've always lived near the ocean and cannot imagine being away from it. I've lived in CT, CA, and NH, and RI.
Have you children? I have three sons and one daughter who is my youngest. She does so much for me. I am so lucky that I have her. I mention her a lot and her name is Anneliese....my little angel.
So enjoy the rest of your weekend. Kevin and I are going to watch a scary movie.
Hi again, Joy. Yup, I've been through almost all of the above. I am very familiar with the specialty of psychiatry; it is a physical medicine specialist. I have one who works with my neurosurgeon.
My SCS also only works on the pain in my legs. The sensations do not go into my lumbar region. I take MSC 60 TID plus morphine IR 15 mg for breakthrough. I was on 90 mg TID and was able to taper down. I have horrible adverse effects and take the least possible of any opiate. Before the SCS my med requirements were far greater and I used Duragesic. I was also taking Methadone for a while. It improved myb pain tremendously, but the side effects were making my life unbearable: sweating (excessive) and extreme fatigue that didn't improve with sleep. It was so bad, especially the sweating, that I didn't want to leave my house and I felt like crap all of the time.