[BwithT]

As I write this, I don't want anyone to get the impression that I am in a dangerous position. I am currently on antidepressants (cymbalta and welbutrin) and seeing a doctor regularly. I am venting, purging or whatever you want to call it. I need to just get these things out so that I am not living it alone. As many of you know, family often do not understand cronic pain, and my family is no exception. That just adds to the isolation I feel. I guess I am not even really looking for replies, just the knowledge that I am not alone. Now that the disclaimer is done...

I am normally the happy person, the one who always finds the funny side of life. I have always been a little on the warped side, nothing is too gross and any situation is fair game (death of a loved one excluded most of the time ). Nothing seen, said or done could make me lose my appetite. Then I hurt my back in a lifting accident at work and 14 months later everything is different.

After the accident, I had very little pain, just a burning sensation in my left buttock. The neurologic symptoms I was having were the problem; bowel & bladder control problems, loss of control of left knee, pins & needles in right toes, no reflexes in ankles and left knee. Almost 11 months later I had L3-S1 fusion, laminectomy with instrumentation. The main change is, now I have pain! I have back pain, paresthesia from above the left knee to toes and from spine to right hip. The paresthesia of the right hip presents mostly as a phantom itch that nothing can satisfy. My buttock was raw until the doctor added topamax to my regimen.

Speaking of pain, I am allergic to morphine and any derivatives, codeine and any derivatives (including anything with codone in the name) and most recently tramadol. So the only thing I can take for my moderate pain is darvocet with is about as effective as sugar pills. I grit my teeth when in pain which leads to headaches, jaw aches and loose teeth. The only saving grace is that I have a high pain tolerance, so it really doesn't slow me down too much.

My family expected me to be all better at 12 weeks post surgery because that's what the doctor said. They don't remember that when I when to my 10 week post-op appointment she took me off work for a year. She didn't increase my lifting restriction from 5 lbs. She told me I had to continue to use my quad cane. And most importantly she told me that it could be up to 2 years for me to heal if at all and that I may not ever be able to return to the job I love.

So here I am, sitting at home all alone, even with the family around me. I have no friends to come visit. My closest friend is busy, busy, busy. Another friend also has a back problem and can't stand to be around me because I have had something done with my back and the Dr.'s won't do anything for hers. My co-workers don't want to bother me and they work the night shift, so I don't know what's the best time to get in touch with them. And seeing them only makes my heart hurt more, thinking that I may not be able to go back to work.

I can drive now, finally, but it is very difficult getting in & out of the car. Plus, I can't sit upright for long, so a road trip is only possible if I have someone else drive. If I do go somewhere, I can't walk far, so there must be handicap access and equipment. Our K-mart doesn't even have an electric cart, just a wheelchair with a basket and bad bearings. The 2 grocery stores only have 1 electric cart each, so if another handicapped person is shopping at that store, I am SOL or vice versa.

I don't want this to be my life. I want to wake up in the morning and be healed. Or not wake up, just keep sleeping (one of the meds I am on is giving me really vivid funky dreams). I am going on a trip at the end of this month. I don't want to come back. I don't like it that my family doesn't understand, they try but...


So no one thinks I am a whiner, I will give you some background. My job; I walk several miles each night, open heavy doors (300 & 500 lb) between 100 & 200 times per night, walk up and down 6 very long concrete and steel stair cases, be able to respond to out of control adult male felon(s) with physical force if necessary.

Two years ago I had an abdominal hysterectomy. A couple days before the surgery one of my fibroids tore a hole through my uterus when I lifted 2 - 5 gal jugs of water. 5 hours after surgery I was only on nsaids. 2 weeks after surgery I was back to work.

I broke the long bone on the side of my foot and walked into the clinic. I told the receptionist that I thought I broke my foot and she just gave me that yah, right look and said, "when?!" When I told her, "about 20 minutes ago", she grabbed a wheel chair and had me sent for x-rays right away. My PCP & I then looked at the break on the x-rays, then we had an argument about postponing my yardsale I had scheduled for the next day. He said 2 weeks, I said it would go as planned, we settled on 1 week. I was in a hard soled shoe, but it made me walk funny & my back hurt so I threw it in the closet & never wore it again. My foot is fine.

I have done any number of things, healed well, healed fast. Nothing stops me, nothing slows me down. NOTHING GETS THE BEST OF ME. THIS CAN NOT BE MY LIFE! I know things would be worse had I not had the surgery, but why can't things be better. Why can't my husband understand all the time. He understands somethings, sometimes. He knows how close I was to paralysis and full blown caudia equina.

If you made it all the way though my post, thank you, it wasn't necessary, but again thank you. Just seeing it on the screen makes me feel better. Feel free to add your own vent. This can be a venom depository.

[BwithT]

It is really a good thing that I didn't need any moral support, because this really wouldn't have been the place to get it. Obviously.

[Wren]

BwithT ~ ~
I've also been checking your post all the time thinking you would have an answer from some one smarter than I am.

I don't have the physical 'problems' you are dealing with now but I sure understand how you feel. I understand how you can be so hideously alone in a group of people.

Now - at 7:20 in the morning I'm crying again ...... I'll be back later..... and whine some more.
I do think other people will be here to talk to you.

[BwithT]

Wren,

Thank you for posting. It is just so nice to be acknowledged.

[Wren]

Aren't welbutrin or cymbalta doing you any good at all? I can't use welbutrin because it's forbidden for us people with epilepsy and I 'think' I've tried cymbalta and failed.

Right now I just quit citalopran (celexa sp? - another failure) and started fluoxetine (prozax)....... wish me luck.

You deal with pain - I just deal with self-pity - poor me. Even brain surgery once in a while doesn't hurt too much Ain't that weird? Of course I haven't see any improvement either - lol

[MSacorn]

Hey Bw/T
I resemble your frustration and acknowledge your pain.

This is an awesome community and lately alot of members myself included have been down. Not sure if the heat has worn us out, or the end of summer fast approaching. It's been quiet this week, for sure.

Keep posting and I look forward to seeing you around.

[BwithT]

Wren,

My meds are working well for me, for the most part, but sometimes I just get so frustrated. Family just doesn't get it, or are sick of hearing it.

My mom had a needle biopsy deep in her brain and was so amaised that there was no pain. There also was no cure, so I lost her in 1990. She would have been the one person who would have listened & not judged me. Can you tell I was a momma's girl?

I hope you are doing well today.

[BwithT]

MSacorn,

Thanks for your reply. I will hang around and try to have some fun. But today I had another setback. My DH took down my quilting table. I designed it, DH, FIL & I built it and we set it up in the basement. I didn't want to do a test run with a good quilt, so I used the first quilt top I ever made. I had maybe about 1/4 of queen sized quilt quilted, but the machine I was using was not stitching well. I was going to buy one of the brother long neck machines. Before I could do that, I had my injury & surgery. I will never be able to use the quilting table. That was very hard on me. I think if we had bought the frame, it wouldn't have been so bad, but it was a family project (and the table worked perfect). Of course rolling the quilt up to be thrown away was not easy either, but it is not worth the effort of ripping out all the quilting that has been done then the expense of having it professionally quilted. Dang it all anyway. It seems like each time I think I am getting a handle on this, some other limitation pops up. Shucks!

[MSacorn]

I so very sorry you had to take down your quilting table. It sounds like an awsome place to quilt. Also, a family project to be proud of. It really sucks when our enjoyable activities are so cruelly taken away. Is there a family member or friend who you can pass it on to. Maybe you can still coach someone and pass on your knowledge.

I was an avid book reader all my life. Now to turn a page brings unspeakable pain and I've not found anything to quiet the sensations. I am hopeful every day it will ease, or a med will come down the path and help.

I wish I can do more then offer my support and let you know you are not alone in your pain and limiitations. Please take care of you.

[BwithT]

Beth,

You are just ever so nice to answer me. I really appreciate it. I am very social, love to talk. It is difficult when you have to spend so much time at home. But then you have to be familar with that.

There is no way my family can understand my pain, not when I have always gone on no matter what. So talking to them only makes them frustrated. The quilt and quilting table were really tough for me. DH & DD don't know how much. I was so proud that I actually designed it, drew the blue prints. sized everything. I finally have the money to buy the sewing machine to use with it. LOL I posted a thread about it on the backpain support group and one of the gals there wants to buy it. I think that is so neat that a spiney could use it. And, I do have a picture of it, so I will always have proof that I accomplished it.

I should have been and engineer. I could have designed all kinds of things and I wouldn't have blew out my back lifting my drafting pencil and ruler! Nope, then I wouldn't have gotten to talk to so many people all day, even if they didn't want to listen (I work in a prison).

When you read books, I am only wondering....have you seen the rubber tipped stick that quadrapaligics use to turn pages? It could limit some of the muscle movements for you. You could make your own using the eraser end of a pencil. Of course you probably already thought of that. Also, my niece had a special utinsel holder that was strapped to her hand because she could not grip, if that is a problem.

I may bounce some pretty silly ideas at you, but I am just trying to be as helpful as I can be. Maybe I can design something for you! We have 2 very close family friends with MS, one of which was just recently diagnosed. It is very difficult to know how to help or what to do. I just do anything I can. At least I haven't caused any bodily harm...yet!