Chronic Pain Lifestyle

So, How Do You Live With Electric, Unrelenting Pain?

         Any reader of this blog notices that Me, Anne, Wanda, Kathy, Zed, Deborah and everyone else who has bravely written in this blog have one thing in common: 

• WE ALL VIEW PAIN AS A FACT.  Pain is in our lives despite all of our attempts to alleviate it, and that a wise course is to simply accept that here and now, we suffer chronic pain. 
• WE ALL HAVE ARRIVED AT A LIFE OF PAIN FROM SOME OTHER PLACE.  Before we were afflicted we had lives much like yours.  We had our ups and downs, successes and failures, joys and tragedies.  We could not imagine chronic pain and probably never even thought of it unless we witnessed it in someone else.
• WE ALL AT ONE TIME OR ANOTHER LIVED WITHOUT CHRONIC PAIN.  We ran, swam, sat for hours at length enjoying iced tea with our friends; we brought children into this world, played with them, hoisted babies effortlessly onto our shoulders, cooked, gardened, or tossed footballs.  We moved our bodies aggressively and without thought.
•   MOST IMPORTANTLY, WE ARE ALL MOVING FROM WHERE WE WERE, A LIFE WITHOUT PAIN, TO A POINT IN THE FUTURE. TO REACH IT, WE WILL HAVE CROSS A BARRIER OF PAIN TO GET THERE.  Obviously, we began a trek through a wilderness of pain that ends as with all humans in our passing from this life to the next.  We can tell you the date this "new" journey began.
• WHY US?  Why not us?  Why not you?

     A better question than, "Why us?", is "Why not us?"  Or maybe even, "Why not you instead?"  Did we do something wrong to warrant this special punishment, or were we so strong that an impediment was needed to slow us down, or maybe to humble us.  Perhaps I hurt today because there is something else I'm supposed to be doing with my life than what I had been doing.  While I can see the merit in being humbled, I DO NOT think that that the wrath of a loving God is visited upon me for (in the words of Iggy Pop) ..."some weird sin".

     No, the easiest thing for me to believe is that I am the way I am because of two reasons, both bridging the spiritual and practical worlds demonstrating that they are one in the same.  Yup.  It's that simple.  One, I choose to view my pain as a special calling, not to convert you or anyone else to my way of thinking, but to demonstrate by living my life by living it; and two, that my life is a pathway that winds its' way through a crowd of people; I'm easy to spot in that crowd.  I'm the guy hobbling on by with a shillelagh to keep me from kissing the street.

     So I live for my example in which I'm like all people, flawed.  Not just because of the limp, but also the occasional grimace or frown or just general bad temperament.  It must sound like either my mind has come adrift, or my ego's wildly out of control.  Neither.  I'm trying to live today very differently than I did a few years ago.

     Back then I lived very comfortably.  I had a great, but easy job on Wall St.-the reward of many years of hard work, missed birthdays, overdue and gooey sentimental Valentines.  I skipped one time events like the 3rd grade orchestra, and championship games for which I contritely swapped box seats at Red Sox games.  I gave diamonds instead of myself.  I bought-off my guilt with things.  I'd fly to NYC from a family vacation at Cape Cod, returning late that evening to stories of a baby's first swim in the ocean.  For these trade-offs I got money and prestige.  At the age of forty I spent a night in a coronary care unit, only to find that my heart was fine, but that I was depressed and a victim of an anxiety disorder.  Nice vacations and gifts made all things right until bang! one day they weren't.

     Now, I live in pain, but do my best to share pleasure.  The insidious creep of all that I ever thought I wanted in my life was there...but my life was empty.  Today I know people I'd never have known.

    Today, the people in my life are my family, and the wonderful people I've met blogging.  Today, I'm coming to know God, and how to pray to him by doing things.  I was going to write He wasn't a moment too soon, but I realize instead that I wasn't a moment too soon.  All it took was a little (lot) of pain for me to realize the grace bestowed on me.

     That's how I get by.  And because I'm human, I still screw it up.  And because I'm human I know He died for my sins so that I might be forgiven. God bless us all. Colin

PS.  To special Friends, just the thought of whom brightens my day:

My Wife, Sarah, Rachel, Zac, Molly, Mum, Dad, Omi, Upu, Anne, Wanda, Dorothy Gantenbein ( http://www.dorothyphoto.com/dorothy_photo/) , Her Mom, Kathy, Deborah ( deborah-weatheringmigrainestorms.blogspot.com  , Val, Jim F., Jim Walton, Lord Matt ( http://lordmatt.co.uk/ ), Zed, Kev. Bobbie the Cop, Big Dave. Vince, Nickie (http://puppybraille.livejournal.com/ ), Liz Strauss (successful-blog.com  ), Michael Dorn (http://disstud.blogspot.com/), Zubli (http://synchronity4change.wordpress.com/ ) 2k Bloggers (http://sandbox.2kbloggers.com/  233 people who left beautiful comments, and the hundreds more who braved the keys to write me an email.  Sincere apologies to those I've forgotten.

   

Pain Pump, #10

        I won't speak for Wanda.  She does that well enough on her own.  After a protracted recovery from yet another surgical proceedure, I'm proud to offer you Wanda's first post since she's been able to fill us in.  Thanks Wanda, the floor is your's.

It seems like it’s been ages since I started my articles about life with my pain pump. In reality it’s only been a little over a year. Now I have one more to add to the list. I think this is number 10.

Here is a brief outline of the first 9. I got my first pain pump in 1989. It did not have any batteries and wasn’t programmable therefore it lasted until 2006. While I had no problems with the pump itself, I did have a problem with my first catheter. It broke into two pieces and had to be replaced a couple of years after it was originally inserted. Catheter problems are common and are usually easily fixed.

Since I have adhesive arachnoiditis in the thoracic and lumbar regions of my spine my pain doctor didn’t want to have to put in a new catheter if the old one was still good. Testing indicated that the sixteen year old catheter was still just fine. When I got my new pump in August 2006 he just spliced into the old one and that was that. Only in reality it wasn’t “that” at all. I never did get pain relief with the new pump. At first it seemed that I did but it didn’t last very long. We changed medications in the pump. That made things worse. We added oral medications which helped some but still the pain was getting worse by the hour or so it seemed to me. The last thing to do was to check the catheter again.                                                             

The pump has an access port for refills but it also has one so that just the catheter can be checked out with a dye test. This is what we did. It showed that my catheter was leaking.  We set the surgery date and I was so happy to know that I would most likely get my pain relief back to a much better degree than I’d had in the two years since the old pump had started to fail.

On the day of my surgery my doctor came to pray with me as he does with all patients who believe in the power of prayer. I looked at the clock just as the anesthesia started to take control. It was 11:20. The surgery was only supposed to take about 45 minutes followed by a short recovery time. I would be home by bedtime. There would only be minor pain for a few days.

My next memory is of momentous pain. I looked at a different clock that said 5:00.  I was being transferred to the bed in my room. Suddenly I got the worse muscle spasm I had ever had up to that point in my life. It started under my arm pits and moved down my entire body and didn’t end until my toes were straight out yet being pulled under at the same time. I screamed!!!!

What was happening to me? These spasms would let up for a short period of time then begin all over again. I could barely move my legs. I could barely move at all except during those muscle spasms and I had no control over those. I was told that pain medications would not help this type of pain because it is muscular. Anyone who has had a muscle cramp in the calf of their leg knows you have to “work” through it to get it to loosen up. But after a few hours of these I told the nurse that they were making me sore and a pain pill would certainly help that. She came back with 2 Percocet. They did help.

The only way I can think of to help describe these “spells” is to compare them to labor pains. They start out easy and slow but build up to the point where you think you can’t survive the pain another second. Then they gradually go away only to return in a short time. Enough about the pain part.

The second day after surgery I was able to walk in the hall so we thought everything was clearing up. We were wrong again. I lost control of my legs. No more walking for me. The pain doctor didn’t know what was wrong with me and neither did the neurologist. None of the nurses had seen a case like this. Baclofen was put in the pump and I got better to some extent and was discharged. The neurologist added Zanaflex with the pain clinic adding Klonipin.

It’s taken all this time but I can usually get up aided by my walker. After that it’s minute by minute. Every day is an adventure with what can I do today or not do today. I’ve done some serious damage to the interior of the house which won’t get fixed anytime in the near future. The kids and I tried flowers but the drought is just too bad for them to survive except the Aloe Vera plants. I can’t even get the outdoor Ivy to root in a different location. This Ivy is not easy to get rid of. I’ve tried for years to get it off our chimney but it comes back. Now it has started across the yard on our fence. Now I’m trying to root it in water in the window. I won’t give up because this stuff grows in all seasons.

I guess I’m like the Ivy. I just won’t go away. However I may have trouble growing new roots.

So now we get to the “good” part. What went wrong with that simple surgery to leave me to live the rest of my life mainly in a wheelchair and suffering muscle spasms at the oddest times? My old catheter had fallen apart and had to be removed in small sections. It was left to run through my body any old way before entering the spine and being threaded to the place where the catheter tip entered the spinal fluid. He had to remove every part of it because it could get infected or a piece could migrate to a major organ. That old catheter was deadly if left in me. He got all but one tiny piece. It was about 7 feet long. This left me cut from the pump all the way around to my spine. OUCH!!

Now the new catheter had to be put in. He wanted to get it as high as possible to give me maximum coverage so he tried to thread it as high as possible. When he got to the T7 area it wouldn’t go any further. He told me he tried for an hour to get it past T7 but nothing worked. At this point he stopped and did a myelogram. He discovered that I have an AVM in the spinal cord at T7 and I also have a crushed T7 vertebra from a fall about 30 years ago. There is simply no way to get through this or even around it. All this poking and prodding has left me with Myeopathy—pressure inside the spinal cord. This is the cause of the spasms. Does it get better? It might given some time but not much. How do you control the spasms so you can still have a life? You over medicate the muscles to stop the spasms or at least calm them down as much as possible.  Doing this leaves you with little to no control over your legs so you are technically paralyzed. My neurologist says we can start to lower the Baclofen in pump just a very tiny amount and see what happens. If they get worse we can always go back up on it. What wonderful choices to choose from. Be confined to bed as a spastic in pain that isn’t controllable or live my life in a wheelchair with legs medicated to the point they don’t work very well if at all. I choose number 2 and will take things as they come.

Wanda

Rock On

    I grew up in a little town on Lake Superior. I lived in an old house on Third St. You could see the lake from my parents bedroom and from the front yard. The house was surrounded by big beautiful trees, lilac bushes and a nice patch of rhubarb in the corner of the backyard.

Growing up, we didn’t have a lot of entertainment to see. We could go to the movies, or watch the parades and see the marching band. Since I was in the band and the orchestra, I did go to a lot of music shows.

Occasionally we would get a famous country singer or polka band to come to Ashland. I remember the summer I was working at the Marine Club. I had to wear this short sailor dress. I was 19, if I say it was short, well you can just imagine. I made a lot of money in tips. Anyway, one night Frankie Yankovic came with his band and did a show. We were swamped. I didn’t get to see any of it, but we did get the band to play “Show Me The Way To Go Home” for the kitchen staff. The owner didn’t see the humor in that request.

Anyway, I went to see concerts in Duluth as often as I could afford them. I saw Alice Cooper, The James Gang, Styx, Eddie Money, Seals & Crofts and Santana. They were all great shows and did a lot to further my love of music. In 1977 I only went to one concert that year, it was Elvis.

My friend Sue had gone to an Elvis concert in Duluth a few years before this. I don’t know why I never asked my parents if I could go, they would have said yes. So when Sue asked if I wanted to go with her parents, my parents were fine with it. First we had to get tickets.

We drove to Duluth the night before tickets went on sale. When we got to the Duluth Arena, there was already a huge line. As we got in line, we got a ticket that gave us our place in line. We were in the 9,000 group. It was ok, I just wanted to see Elvis.

We got our ticket and stood there for hours. After it got dark, the wind picked up quite a bit off of the lake and there was blowing snow. The people that run the Arena took pity on us and let us into the Arena to spend the night. We all filed in and didn’t lose our place in line.

It was quite a sight to see all of those people, spending the night to get a ticket to see Elvis. It was exciting just watching the other people. I remember we saw Sal Cavatini. He was a sportscaster in Duluth, pretty famous to me anyway.

As the night wore on, we talked and talked about what we would do if we ever saw Elvis, what would you do???? Lots of giggling and secrets. It was a giant teenage sleep over, for teenagers of every age and circumstance. I felt like I was a part of a very special group of people. Like we were the chosen few who were going to see the greatest entertainer.

I was an Elvis fan from an early age. I couldn’t have been more than 6 or 7 years old when I saw an Elvis movie. I was hooked. Of course at that young age, I really didn’t understand what it was, why I liked him. I just knew that his face made me smile, he had a nice voice and whenever he looked at his leading lady, I wished I was in her place. Pretty romantic stuff for such a young girl.

So here we were, February of 1977 waiting for Elvis tickets to go on sale. All night long we talked and talked about how much we loved him and how much we wish we could meet him. By early morning, we were tired but happy when the lights were turned up and everyone started chatting excitedly about where we would be sitting, what he would wear, what we were going to where, etc.

We were lucky to get tickets. There was no limit on how many tickets a single person could buy, so a place in line did not guarantee that you would be able to buy a ticket. But we got seats and the show did sell out later on that morning. We took our tickets and guarded them with our very lives. We had to wait 3 months before he would be here, but he was coming and we were going to be in the very same building as him.

The concert date finally arrived. I was so excited, I could barely brush my teeth, I was shaking so badly. I didn’t know what to wear, how to fix my hair, etc. I was never this excited to see anyone before. I couldn’t eat and I couldn’t stop staring at the clock, waiting for Sue and her parents to pick me up.

When Sue’s family arrived, I ran out the door like I was shot out of a cannon. I was never so happy to see that little brown car in my whole life. Sue bought a dozen red roses to throw onto the stage. We were sure Elvis would notice us if we did that. We squealed in the car the whole way up to Duluth.

And wouldn’t you know it, we got a flat tire! We were all sitting there with our tickets and imagining the worst. What if we couldn’t get going? What if we were late?

Sue’s Dad was driving and he changed the tire very quickly, but we were sure we were not going to make it to the show. I started praying under my breath. I know that this is not the sort of thing a person should pray for, but I knew God would forgive me this one selfish thing. I just wanted to see Elvis so badly.

We got to the arena and parked the car. Sue, her Mother and I were almost at a dead run to get inside. It wasn’t cold out and we had reserved seats, but we were so excited. Imagine if you can 11,000 women and men of all ages. Mostly women, a lot of them who had their hair done in sky high beehives and too tight jumpsuits, all inside the arena, chatting and screaming every time a new act is introduced.

There were 2 opening acts, I can’t remember what they were, but it seemed like they were on the stage for a long time. And then it happened, the music from 2001 A Space Odyssey started to play, the stage went dark.

I swear you could hear my heart beat. The crowd was quiet, we were all sitting on the very edge of our seats. We were in the first balcony, to the right of the stage. Not the best seats, but definitely not the worst. I can still remember this moment, like it happened yesterday.

From where we were sitting you could see a little of the back of the stage. I was looking to see if I could see Elvis and that’s when I saw it. The white shoe on the top step of the ramp that went to the stage from the back of the arena. I knew it was him, I jumped up, pointed and screamed. So did Sue. Come to think of it, so did everyone else. It was pandemonium.

The women in the front row began dropping like flies. The bee hive hairdos in jumpsuits, were fainting faster than the EMT guys could carry them out. All Elvis had to do was wiggle his hips and several of them would just drop. I didn’t even know they had stretchers at the arena. I had never seen this before. No concert experience ever prepared me for Elvis.

Sure he wasn’t young, or in great shape, but he was there and I was there and it was a concert I would never forget.

About a third of the way through the concert, Sue and I ran over to the stage and dropped the roses. Elvis walked over, picked them up and looked up and said “Thanks girls”

Remember the phrase “The shot heard ‘round the world”? Well this was the scream heard around the world. It was one of those moments you will never forget. A moment in time when your life intersects however briefly with someone else's and it changes the course of your life. I don’t know what difference that moment made in my life exactly, but I know that something changed for me. I was not the same person after that moment. Maybe it was because I realized the frailty of life. In just a few months, Elvis was gone and that moment we shared became very important to me.

There were dozens and dozens of moments like that during the concert, but that was the only one that mattered to me. My heart still pounds when I remember how I felt.

And then it was over. The show was finished, the EMT’s had transported the beehive-jumpsuit ladies to the nearby hospital and the rest of us were all worn out from the jumping up and down, the screaming and the sheer excitement of it all. We walked outside to the parking lot and got in the car. It was a very quiet ride home as we all replayed the show in our minds.

And so here we are today. It’s 30 years since Elvis died. I like to think that maybe he was like a shooting star who burned so brightly that he had to leave us much too soon.

Elvis has left the building, but not our hearts.

Rock on.

Anne

How Much Does It Cost?

Dear Readers:
I must apologize for not writing lately. My doctor changed my pain meds and although they're helping me, they come with a lot of side effects. My pain management is better, I feel much better, but I'm very sleepy and shaky. I feel like I'm on a permanent "happy hour". I'm hoping the side effects will lessen over time, so be patient. I'll try and write whenever I can.

Anne
I grew up in a little town on the shores of Lake Superior. Ashland had around 9,000 people which seemed like a lot to me considering all the other towns around us, didn’t even have a stop light.

Although it was a little town, there was a lot to do as a child. In summer we would swim all day, play wiffle ball, ride our bikes and explore the swamps and revines looking for any kind of treasure to play with.

We also had a movie theater. In the fall and winter, we would go to the Sunday matinee. i remember the show cost 50 cents and the popcorn was 15 cents and black cherry soda was a dime. A whole afternoon of entertainment for 75 cents.

It always seemed that Clare (my little sister) and I had money enough for the show on Sunday. Our Gramma Al and Aunt Susie my Dad’s Mom and his sister, would send us $2.00 each ever week for an allowance. The allowance would arrive every Friday like clockwork.

For years the money went to candy and the matinee on Sundays. But there were other things I wanted too. Sometimes I used the money to buy a book to read or a puzzle or a little knick knack for my room. The
Happy Hallmark Store (no joke, that was the name) got a lot of business from the girls in our town. We were just getting to the age when we would write in diaries, daydream about boys, etc. The poster of the kitten hanging on for dear life with the caption “Hang In There” was a favorite of mine.

Over the years as I got older the things I wanted cost much more than the allowance I received. As we got older the allowance increased to $5.00 per week and we still found ourselves saving for the important things. Back when Levi’s were $15.99/ we could get a pair nearly every month if we were willing to give up movies and candy. Which we did more often than I thought we would.

And then there was the one thing I truly wanted for my bedroom. My own TV. At $5.00 per week, it took a long time to save up my money. I also got money for my report card. I got $5 for every A and $5 for every grade that was improved. like from a B to an A. I normally got all A’s and one B, so report cards were very valuable to me.

I finally saved enough money when I was in 10th grade. My Mom took us shopping in Duluth. These shopping trips were an all day event. A lot of the time, we also took my Mom’s Mother, Gramma Berg with us.

The first stop on our shopping day was Target, where I would watch the lady decorate fancy cakes. I could stand there all day and watch the pretty colors and the roses and see her write the names of the birthday kids on their cakes. Boy that was living. Most of the time I would do a little shopping there. The clothes were cute and back in the 70’s T-shirts were a staple of my wardrobe and were very inexpensive. But I didn’t buy anything that day.

Next we went to the Miller Hill Mall. This mall was very little, but what did we know, it was the first mall I had ever seen and we loved it. I think there were only 10 stores in the mall at that time. It has grown much larger over the years, but at first it was very small. Again, I was not spending any money, I had my TV in my sights and I was bound and determined to finally buy my very own set.

After the mall we would go out to eat. Most of the time we went to the Chinese Lantern. It was a great restaurant. I loved Fong Wong Chicken. I ordered it every time we went there. I can still almost taste it. Unfortunately, the Chinese Lantern burned down and we’ve never found a good substitute for it.

After lunch, we finally went to Goldfines to help us walk off our big dinner and shop. Goldfines Department Store sold furniture, electronics and toys. I had my $65.00 in my pocket and was determined to get my own TV. I walked into the store with my Mom and we rode the escalator up to the second floor of the store.

I went over to the electronics area. There were the TV’s. The big ones for your living room. Back then the big (25 inch)TV’s came in beautiful wood cabinets. The bigger the TV, the bigger the cabinet.

I was in the market for a little portable TV that I could place on a shelf in my room. My parents had our rooms redecorated. I had a big hand-built wall unit. It had a place for my stereo on the left and on the right a place for a TV. It even had a pull out shelf, so you could pull the TV out and see it better. The only thing missing in my room, was the TV.

I looked at the rows of big TV’s, and then I saw it. The Panasonic 11 inch TV. It was a black and white model and the incredible thing was that it was blue!!! Instead of the boring black plastic, this was a very groovy shade of blue. I would call it “electric blue”. It looked like the coolest thing I had ever seen.

It was not square, the blue plastic case was rounded. That made it look even more modern. I was in love with it , and I could afford it.

I bought the TV and we headed home. I don’t remember a single thing that anyone bought that day, except for my TV. I remember putting it on the shelf and settling in my bed to watch. By the way, there was no remote control but that was ok. I would watch the channel 10 news from Duluth and then, “Mary Hartman, Mary Hartman”. I loved that show.

I was all set in my room with my own TV. I felt a little independent because I was truly in control of what I wanted to watch. I didn’t have a video game (the only one out was Pong), and I didn’t have a VCR (we didn’t have them back then), but I had a black and white TV and I could watch old movies or new ones without interruption. It was almost like having my own place.

Saving for months to get that little TV was worth giving up all the movies, candy that I missed. I was really proud of the fact that I had my own TV and that I paid for it myself. And that was the part that really mattered. I paid for it myself. I still feel that way about things. The saving and the waiting makes me appreciate things a little more.

Right now I feel like we’ve all been saving and waiting. Saving our strength and waiting until someone, somewhere comes up with a treatment or cure that will finally end this blasted disease.

Until then, I will wait as patiently as possible and save my strength as much as possible, until we have paid the price and finally get that one item that is just beyond our reach, a pain free life. Keep saving folks, we’ll all get there someday.

Anne

Always check The fantastic site of Lord Matt

http://lordmatt.co.uk/lordmatt .  The man whose brain is in a vat.  This ought not be held against him.

From a Reader: YOU MUST READ!!!!!

Reader Zed posted this comment today, 8/9/07. 

     It's just too easy to sit back and collect disability checks complaining about our incomes dangerously close to our expenses when we read a story like the one below.  I'm in pain, I'm afraid of losing the quality of my life, then Zed disrupts the morning coffee with a story of one of his friends who also suffers BUT will lose everything!

     Philosopher, John Rawls, wrote the most important three words, which are also the title of his most highly regarded tomes.  JUSTICE IS FAIRNESS.  Read on, don't spill a drop, and answer this:  WHERE IS THE JUSTICE IN THIS WOMAN'S LIFE?

     Write back, post a comment if you've any conscience.  More than that, write and ask what you can do to help.  Something, anything?  Yes, I know, we all have our own burdens; we can all ease some of our own if lighten these loads by giving something away; DO SOMETHING!!

     Although I hope it will not be the motivating factor in my giving I wonder who's next? Me? or is it you?

From Zed:

And to continue this discussion...

a close female friend of my for nearly 20 years... who's going to be turning 47 toward the end of this month... just received a notice from Social Security, that "she's no longer disabled", and "that her benefits are going to be cut off", since "she's able to return to work"!!!

Now... for TWENTY YEARS (since 1986)... she's received Social Security benefits checks (SSI & SSDI), due to her history of chronic depression (she has obsessive compulsive disorder and she hoards), decreased cognitive skills (due to closed head trauma from a car accident),  scoliosis, disc herniation with bone spurs (the same car accident), fibromyalgia, and incontinence due to fibroid in her bladder and uterus...

now, all of a sudden... some worker at Social Security sends her a notice, that "they've reviewed her original claim", and "all of her medical records (dating back 20 years to 1986) supporting her claim", and "now have decided that SHE'S NO LONGER DISABLED!!!

to add INSULT TO INJURY... on the bottom of her "decision" notice... they wrote: "we know that you have no skills, but you SHOULD BE ABLE TO FIND SOME TYPE OF WORK THAT YOU CAN DO... that will PAY YOU ENOUGH MONEY to live on and support yourself!!!

she lives in California... one of the MOST EXPENSIVE PLACES in the U S to live...

also... they "checked in to her banking records"... without notifying her... (part of Bush's Homeland Security Legislation!!!) since she's living "beyond her means"... by playing "credit card rodeo" with 7 credit cards... they "think that she's recovered from her disabilities"!!!

she's filing an appeal... but, she's been told... that her "appeal" could take 10 years to go to a hearing!!!

in the mean time... she's going to end up homeless and without funds to support herself!!!

so... there's "more evidence"... on how Bush and his policies... are "trying to save Medicare", by "kicking people off of Medicare's disabled list"... and, "into the streets"!!!

     Whatever our political feelings, liberal or conservative, there is no room in either camp for injustice.  I eagerly await your response.  God bless us all, Colin 

Ten Guidelines from God

      I hope you enjoy reading these emails that fly around quicker than Wall St. jokes.  I certainly do.  A good friend and ours, Kathy, faithfully sends these to me.  I print them in the hopes that if you've missed any of these epistolaries, you can read them here.  Kathy suffers from chronic pain caused by "LAM".  Please pray for her; pray that her burden may be eased and that she will survive this terrible disease.  God bless, Colin

Ten Guidelines From God

Effective Immediately, please be aware that there are changes YOU need to make in YOUR life. These changes need to be completed in order that I may fulfill My promises to you to grant you peace, joy and happiness in this life. I apologize for any inconvenience, but after all that I am doing,this seems very little to ask of you. Please, follow these 10 guidelines:

1. QUIT WORRYING: Life has dealt you a blow and all you do is sit and worry. Have you forgotten that I am here to take all your burdens and carry them for you? Or, do you just enjoy fretting over every little thing that comes your way?

2. PUT IT ON THE LIST: Something needs done or taken care of. Put it on the list. No, not YOUR list. Put it on MY to-do-list. Let ME be the one to take care of the problem. I can't help you until you turn it over to Me. And although My to-do-list is long, I am after all... God. I can take care of anything you put into My hands. In fact, if the truth were ever really known, I take care of a lot of things for you that you never even realize.

3. TRUST ME: Once you've given your burdens to Me, quit trying to take them back. Trust in Me. Have the faith that I will take care of all your needs, your problems and your trials. Problems with the kids? Put them on My list. Problem with finances? Put it on My list. Problems with your emotional roller coaster? For My sake, put it on My list. I want to help you. All you have to do is ask.

4. LEAVE IT ALONE: Don't wake up one morning and say, "Well, I'm feeling much stronger now, I think I can handle it from here." Why do you think you are feeling stronger now? It's simple. You gave Me your burdens and I'm taking care of them. I also renew your strength and cover you in my peace. Don't you know that if I give you these problems back, you will be
right back where you started? Leave them with Me and forget about them. Just let Me do my job.

5. TALK TO ME: I want you to forget a lot of things. Forget what was making you crazy. Forget the worry and the fretting because you know I'm in control. But there's one thing I pray you never forget. Please, don't
forget to talk to Me - OFTEN! I love YOU! I want to hear your voice. I want you to include Me in on the things going on in your life. I want to hear you talk about your friends and family. Prayer is simply you having a conversation with Me. I want to be your dearest friend.

6. HAVE FAITH: I see a lot of things from up here that you can't see from where you are. Have faith in Me that I know what I'm doing. Trust Me; you wouldn't want the view from My eyes. I will continue to care for you, watch over you, and meet your needs. You only have to trust Me. Although I have a much bigger task than you, it seems as if you have so much
trouble just doing your simple part. How hard can trust be?

7. SHARE: You were taught to share when you were only two years old. When did you forget? That rule still applies. Share with those who are less fortunate than you. Share your joy with those who need encouragement. Share your laughter with those who haven't heard any in such a long time. Share your tears with those who have forgotten how to cry. Share your
faith with those who have none.

8. BE PATIENT: I managed to fix it so in just one lifetime you could have so many diverse experiences. You grow from a child to an adult, have children, change jobs many times, learn many trades, travel to so many places, meet thousands of people, and experience so much. How can you be so impatient then when it takes Me a little longer than you expect to
handle something on My to-do-list? Trust in My timing, for My timing is perfect. Just because I created the entire universe in only six days,everyone thinks I should always rush, rush, rush.

9. BE KIND: Be kind to others, for I love them just as much as I love you.  They may not dress like you, or talk like you, or live the same way you do, but I still love you all. Please try to get along, for My sake. I created each of you different in some way. It would be too boring if you were all identical. Please, know I love each of your differences.

10. LOVE YOURSELF: As much as I love you, how can you not love yourself? You were created by me for one reason only -- to be loved, and to love in return. I am a God of Love. Love Me. Love your neighbors. But also love yourself. It makes My heart ache when I see you so angry with yourself when things go wrong. You are very precious to me. Don't ever forget......

Note: I received this from a friend and I have no idea who wrote it, but I was so touched by it, that I had to share it with you. I hope that you will be blessed by it and will share it with others.

The Yellow Shirt: Glory in His name.

        These stories fly around the net.  Every now and then I catch one; this story, "The Yellow Shirt", favors this reader with a wonderful lesson.  I hope that you find beauty and meaning in this piece. I hope you enjoy it, too.

     The yellow shirt  had long sleeves, four extra-large
pockets trimmed in black thread and snaps up the
front.  It was faded from years of wear, but still in
decent shape.  I found it in 1963 when I was home from
college on Christmas break, rummaging through bags of
clothes Mom intended to give away.  "You're not taking
that old thing, are you?" Mom said when she saw me
packing the yellow shirt.  "I wore that when I was
pregnant with your brother in 1954!"
   

     "It's just the thing to wear over my clothes during
art class, Mom.  Thanks!"  I slipped it into my suitcase before she could object. The yellow shirt be came a part of
my college wardrobe.  I loved it. After graduation, I
wore the shirt the day I moved into my new apartment
and on Saturday mornings when I cleaned. 

     The next year, I married.  When I became pregnant, I
wore the yellow shirt during big-belly days.  I missed
Mom and the rest of my family, since we were in
Colorado and they were in Illinois   But that shirt
helped.  I smiled, remembering that Mother had worn it
when she was pregnant, 15 years earlier. 

   
     That Christmas, mindful of the warm feelings the shirt
had given me, I patched one elbow, wrapped it in
holiday paper and sent it to Mom.  When Mom wrote to
thank me for her "real" gifts, she said the yellow
shirt was lovely.  She never mentioned it again. 

     The next year, my husband, daughter and I stopped at
Mom and Dad's to pick up some furniture.  Days later,
when we uncrated the kitchen table, I noticed
something yellow taped to its bottom.  The shirt!  And so the pattern was set. 

     On our next visit home, I secretly placed the shirt
under Mom and Dad's mattress.  I don't know how long
it took for her to find it, but almost two years
passed before I discovered it under the base of our
living-room floor lamp.  The yellow shirt was just
what I needed now while refinishing furniture.  The
walnut stains added character. 

   
     In 1975 my husband and I divorced.  With my three
children, I prepared to move back to Illinois.  As I
packed, a deep depression overtook me. I wondered if I
could make it on my own.   I wondered if I would find
a job.  I paged through the Bible, looking for
comfort.  In Ephesians, I read, "So use every piece of
God's armor to resist the enemy whenever he attacks,
and when it is all over, you will be standing up." 

     I tried to picture myself wearing God's armor, but all
I saw was the stained yellow shirt.  Slowly, it dawned
on me.  Wasn't my mother's love a piece of God's
armor?  My courage was renewed. 

   
     Unpacking in our new home, I knew I had to get the
shirt back to Mother.  The next time I visited her, I
tucked it in her bottom dresser drawer. 

   
     Meanwhile, I found a good job at a radio station.  A
year later I discovered the yellow shirt hidden in a
rag bag in my cleaning closet.

     Something new had been added.  Embroidered in bright
green across the breast pocket were the words "I BELONG TO PAT." 

 
     Not to be outdone, I got out my own embroidery
materials and added an apostrophe and seven more
letters.  Now the shirt proudly proclaimed, "I BELONG
TO PAT'S MOTHER."  But I didn't stop there.  I
zig-zagged all the frayed seams, then had a friend
mail the shirt in a fancy box to Mom from Arlington ,
VA.   We enclosed an official looking letter from "The
Institute for the Destitute," announcing that she was
the recipient of an award for good deeds.  I would
have given anything to see Mom's face when she opened
the box.  But, of course, she never mentioned it. 

   
     Two years later, in 1978, I remarried.  The day of our
wedding, Harold and I put our car in a friend's garage
to avoid practical jokers. After the wedding, while my
husband drove us to our honeymoon suite, I reached for
a pillow in the car to rest my head.  It felt lumpy.
I unzipped the case and found, wrapped in wedding
paper, the yellow shirt.  Inside a pocket was a note:
"Read John 14:27-29.  I love you both, Mother." 

   
     That night I paged through the Bible in a hotel room
and found the verses:  "I am leaving you with a gift:
peace of mind and heart. And the peace I give isn't
fragile like the peace the world gives.  So don't be
troubled or afraid.  Remember what I told you: I am
going away, but I will come back to you again.  If you
really love me, you will be very happy for me, for now
I can go to the Father, who is greater than I am. I
have told you these things before they happen so that
when they do, you will believe in me." 

   
     The shirt was Mother's final gift.  She had known for
three months that she had terminal Lou Gehrig's
disease.  Mother died the following year at age 57. 

     I was tempted to send the yellow shirt with her to her
grave.  But I'm glad I didn't, because it is a vivid
reminder of the love-filled game she and I played for
16 years.  Besides, my older daughter is in college
now, majoring in art.  And every art student needs a
baggy yellow shirt with big pockets.

     As I said, I've shamelessly taken this parable from a chain email.  While I don't believe that God favors those who don't break the chain, I must admit that I believe that he does favor those who testify to His glory, and doen't a chain letter e-mail do that?  God bless us all, Colin

ICE: In Case of Emergency: Store in your cell phone

    Reader Deborah forwarded this along to me; one of those "Why didn't I think of that?"  Please read on...

Sounds like a good idea to me.

ICE Campaign - "In Case of Emergency"

     We all carry our mobile phones with names and numbers stored in its memory but nobody, other than ourselves, knows which of these numbers belong to our closest family or friends.

     If we were to be involved in an accident or were taken ill, the people attending us would have our mobile phone but wouldn't know who to call.  Yes, there are hundreds of numbers stored but which one is the contact person in case of an emergency?

     Hence this, "ICE" (In Case of Emergency) Campaign.

     The concept of "ICE" is catching on quickly. It is a method of contact during emergency situations. As cell phones are carried by the majority of the population, all you need to do is store the number of a contact person or persons who should be contacted during emergency under the name "ICE" ( In Case Of Emergency).
     The idea was thought up by a paramedic who found that when he went to the scenes of accidents, there were always mobile phones with patients, but they didn't know which number to call. He therefore thought that it would be a good idea if there was a nationally recognized name for this purpose. In an emergency situation, Emergency Service personnel and hospital Staff would be able to quickly contact the right person by simply dialing the number you have stored as "ICE."

     For more than one contact name simply enter ICE1, ICE2 and ICE3, etc. A great idea that will make a difference! Let's spread the concept of ICE by storing an ICE number in our mobile phones today!

    Please forward this. It won't take too many "forwards" before everybody will know about it.  This really could save your life, or put a loved one's mind at rest. ICE will speak for you when you are not able to.

     Thanks so much, Deb.  I'd really love to know who thought this one up; to any blogger out there, please use this message.  With many thanks, God bless us all, Colin 

Your Rights as a Disabled American are Under Fire

        I feel so strongly about the miasma of our rights that I feel it would be a disservice to you if I didn't make you aware of the items listed below.  What you do with the information below is your business; I encourage you to act as your conscience dictates. 

     I strongly believe that we should not take our rights for granted.  To do nothing is not wrong, but it is a descision.

     Please read:

     ADA RESTORATION ACTION CENTER
Powered By ADAWatch.org

After years of being weakened in the courts, Congress
is coming to the rescue of the Americans with
Disabilities Act (ADA), the bipartisan civil rights
protections signed into law in 1990.

Majority Leader Steny Hoyer (D-MD) and Representative
James Sensenbrenner (R-WI) introduced the ADA
Restoration Act of 2007 on July 26, the seventeenth
anniversary of the ADA. Senator Tom Harkin (D-IA) and
Senator Arlen Specter (R-PA) have introduced
the bill in the Senate.

This vital legislation will restate and clarify the
intent of Congress in order to keep the promise of
the ADA. Please take action now to encourage members
of Congress to sign-on and pass this legislation which
was drafted with the support of a broad coalition of
disability organizations. 

Contact Congress:

Copy this link to tell your representatives in
Congress to support the ADA Restoration Act.

http://www.democracyinaction.org/dia/organizationsORG/adawatch/campaign.jsp?campaign_KEY=6722&t=roadtofreedom.dwt

Sign the Petition:

Copy this link to show your support for passage of the
ADA Restoration Act. We will distribute the petitions
to Congress and the media.

http://www.roadtofreedom.org/petition

Tell Your Story:

Copy this link to tell your story about disability
discrimination, how the ADA has helped you or how the
promise of the ADA is still unfulfilled. We will share
these testimonials with Congress and the media.

http://www.roadtofreedom.org/story

Get On the Bus:

Follow the Road To Freedom: Keeping the Promise of the
ADA, our year-long, cross-country bus tour promoting
the restoration of the ADA. Freedom bus Check out the
tour schedule, read the blog and view photos of our
journey so far covering more than 14,000 miles, 30
states and 45 bus stop events.

Go to: http://www.roadtofreedom.org

Background:

Seventeen years ago, Congress passed the Americans
with Disabilities Act (ADA) with overwhelming
bipartisan support.

However, in recent years, a number of Supreme Court
decisions have significantly reduced the protections
available to people with disabilities in employment
settings.

Courts are quick to side with businesses and
employers, deciding against people with disabilities
who challenge employment discrimination 97% of the
time, often before the person has even had a chance to
show that the employer treated them unfairly.

Indeed, courts have created an absurd Catch-22 by
allowing employers to say a person is "too disabled"
to do the job but "not "diabled enough" to be
protected by the ADA.

People with conditions like epilepsy, diabetes, HIV,
cancer, hearing loss, and mental illness that manage
their disabilities with medication, prosthetics,
hearing aids, etc. -- or "mitigating measures" -- are
viewed as "too functional to have a disability and
are denied the ADA protection from employment
discrimination.

People denied a job or fired because an employer
mistakenly believes they cannot perform the job or
because the employer does not want people with
disabilities in the workplace are also denied the
ADA's protection from employment discrimination.

     Credit for the content above is not mine although I wish I could claim it.  Reader Zed passed this on to me and I've printed it for you.  The above clearly states what you can do to protect yourself.  God bless us all, Colin