[LucysFlower]

I can't believe that it is so hard to understand this stuff. Be warned, this is going to sound like a rant.

I posted in Neuromuscular Disorders Forum under title of Myelopathy?? Spinal Cord Syndrome??, with one reply telling me to go here. OK.

I'm just trying to understand this. I have been progressing for 30 years now, but I think this all started when I had Polio-Encephalitis in 1950. But now I'm such a mixed bag of symptoms (old bag now, heehee ), because now I also have spinal cord compression, and the neurosurgeon said I have spinal cord atrophy. It is the "higher up" stuff going on that has me concerned, which causes the upper motor neuron signs that have plagued me long, long before the Cervical Spondylotic Myelopathy (2005).

But now, I see a real possibility that I might not ever get a certain diagnosis. My extended family has long ago bailed out on me, call me lazy, don't want to work, you don't like yourself, all that blaming thing.

My daughter has been OK, but does not realize that now I am at a point in this where I truly need some help with minor stuff -- like shopping for groceries, house chores, etc.

I have upper motor neuron signs, visual distortion, stacked vision when fatigued, atrophy of left facial and chest muscles, now the right chest muscles are atrophied. Last two years, a loss of muscle and power in left thigh, and loss of strength in hands and arms. The right arm is worse, but didn't have polio on that side. After 30 years of this stuff, that is a significant progression. And the pain is unbelievable! In 2004, my feet started turning over and in 2005, I got below-knee leg braces -and then a cervical fusion of C5-C6. But I probably should have had the braces after my polio -- no one really knows. I will probably need an above-knee leg brace soon for left leg, I am told.

Regardless, I always remember to thank God that I am still walking and living independently. I just want to be free. But Dang! -- you would think that a relative might offer to help with something once in a while. When mowing the lawn, I had bleeding inside my feet, still no help. Anyway, I sold my house finally, and moved with no help from family. I didn't really push the help part, as my daughter has her own life. What can I say... I don't want to intrude.

I am in the process now of a mental moving on -- leaving my relatives behind in this -- as they just don't get it. It hurts. One thought is that my daughter can't cope with this. I think it might be better to just move to a different state. I don't know.

How do you cope with all this stuff? BTW, I am an eternal optimist.

LaVerne
ROCKING ON.

[Leesa]

Hi LaVerne ~ Good grief, what IS it with your family! They are really something! Do they think that you'd go to the extremes that you've had to go thru just for KICKS??? What a bunch of .....

You are going to HAVE to sit your daughter down and FORCE her to cope. You may need her at some time in the future, and she's GOT to learn to deal with this. Why should you be all alone? It's time she grew up and found out that life is full of these crises and yes, even HER family has them. You are her Mother - and she is going to have to learn that she may have to help you sometimes. And don't YOU turn down her help ~ in fact you should insist on it! lol Don't move far away from your daughter. You WILL need her at some time. You don't have to pay any attention to the other relatives, but daughter? Yes.

A lot of people "don't get" our diseases. Most of the time, they can't SEE what is wrong with us, so when we take a handicapped parking spot, we're likely to get a chewing out from people just because we "look" fine. Little do they know that we're in mortal pain!! And it's the same with our families but you would think that THEY would believe us! But they're the same as everyone else, I guess. Total idiots. lol

I cope with it one day at a time ~ and then just consider the source. We're talking about ignorant people who don't have a clue about chronic pain - and I wish they could walk ONE DAY in our shoes to see what we're dealing with 24/7 and many times for the rest of our lives. That goes for our doctors too! lol

I wish you the best of luck ~ take care of YOU and God bless. Hugs, Lee

[LucysFlower]

Lee! That was a super nice reply! Thanks so much!

You know the drill, don't you. You have PAIN!!, sorry. I read your stuff, awful stuff, bless your heart, you have been through so much, and it's not over until it's over. I wish you well and a good night's sleep.

You are totally right about my daughter. I would like to move away, as I hate that rejection, that's what it feels like, but I know I can't leave my daughter. And now I have grandchildren, so I can't bail out on her or them. She is so unaware of what is happening with me. I tell her things, but like you say, she has no clue.

Maybe I SHOULD tell her that I am needing a "shopping day" at least once a month now. The heavy stuff is so hard to deal with, like kitty litter (for my doggy, Bean), and potatoes, and apples. That kind of stuff is so hard to take on a city bus, and the whole thing is such an ordeal to carry home, even in a cart.

I read that you have had a morphine pump, Wow. For years I have rejected any kind of drugs from doctors, too many liver and kidney killing side-effects. My rule is -- no drugs, no painkillers, and only rarely a Tylenol. At first I was taking them, was asking for help with pain, but I was a prisoner. I still had pain anyway, and some doctors accused me of being a drugseeker, and the painkillers magnified the pain when they wore off. So I use bio-feedback, and I am very good at it. I decided to do this when my good neurologist commented that I shouldn't take painkillers for "benign" pain. Huh?? But he meant that nothing will ever cure my spinal cord pain, so I should learn to go drug-free.

Take care, Lee, and thanks again for the good advice.

LaVerne


PS. Photo is my best friend and companion, a lovely, one year-old female Hairy Hairless Chinese Crested. If you Google her AKC name, LeeLoo Love Me Bean, you can look at her listing and pedigree on the Chinese Crested Registry.

[Leesa]

Dearest LaVerne ~ I like this saying: Pain is inevitable, suffering is optional. Why are you DOING this to yourself??? God gave us brains for a reason. He expected us to use them. He also have us DRUGS for a reason ~ to EASE our pain!! Opiates don't harm your liver ~ they aren't "broken down" by the liver. And any neurologist that told you that you shouldn't take medications for "benign" pain (my God!) is an ***. He shouldn't even be practicing because he has NO CONCEPT of chronic pain!!

Do you know that constant, intractable pain can cause a person to life a shorter life??? That is a person who does NOT take any meds, or cannot GET them. Your body just shuts down - it tires out from fighting it. I don't know how severe your pain is, but WITHOUT pain meds, mine, on a scale of 1-10 is a 15. If I didn't take meds, I'd be at the hospital every day! How you can stand this is beyond me.

You SHOULD be taking pain medication is your pain is severe. Anyone who knows about chronic pain would NOT think you are drug seeking. I would NOT however discuss any medications with my family -- they don't understand this kind of thing and would probably call you an addict.

No, I didn't have the morphine pump ~ I just had the TRIAL for it. It turned out I was too small to have it implanted. I had the SCS implanted, and that tried to work itself out, so I had to have it taken out. It didn't work well anyway.

Your daughter should AUTOMATICALLY take you shopping and I'm embarrassed FOR her that she doesn't! She KNOWS you're disabled - how are you supposed to bring all your groceries home on the bus?? Is she nuts?? I'm sorry, but she sounds a bit selfish - she should be taking better care of you!! I spoiled my daughter to pieces, but I Know she'd make sure I had what I needed, even if she went and got my groceries herself, which is what she would probably do.

I hope you can get some meds, and some HELP. You need both! God bless you dearheart. My prayers are with you.

[LucysFlower]

How kind you are, Leesa.

Yeah, I know. My daughter really IS self-centered, and I know she loves me. When I tell her to come, I'm sure she will. I am trying to hold out until the children get a little older too. Yes, it does make me sad that she doesn't offer.

About the pain, yes it can be VERY bad. Even 5 years ago, doctors didn't want to give me pain meds so I could sleep at night. I only wanted Darvocet. To hell with them. Why is MY pain any different than someone elses?? And my pain is not always at the same level, but is always there. Anyway, I'm over it. When I had spine surgery, afterwards the nurse was surprised that I didn't use the morphine pump. It was hooked up, I just didn't need to use it. I wanted to walk out of there the next morning, which I did.

The trade-off that I get for not taking meds, is that I don't have to then take meds for my seizure disorder. Talk about living in Hell, having seizures is a whole other ball game. It takes a year for the brain to go back to normal after a seizure.

The other thing is that taking meds changes my mood, and I just can't live that way. It puts me below the I'm OK scale, do you know what I mean??

I am well aware of how pain affects the body. If I don't live to be a 100, I'm OK with it.

Take care.
LaVerne