My amazing RABlogweek comes to an end with this post.
It was the easiest one to write.
Each blogger was asked to talk about "Great Blogs I Have Read."
Mine came to me immediately.
Not long after I began writing for Creaky Joints (www.CreakyJoints.org) I found this post and it was the perfect way to answer so many of the questions about how I deal with my health as soon as people discover how long I lived with RA and the several auto-immune diseases I have.
It's called "The Spoon Theory" and was written by a woman with Lupus, Christine Miserandino.
You can read it yourself at www.butyoudontlooksick.com/category/the-spoon-theory/
For those who haven't I'll try to explain it.
Let's pretend I have 12 spoons waiting for me every morning when I wake up.
I open my eyes, try to move and discover everything hurts. Still, I have to get up.
That's one spoon.
I've got to reach the place I keep all my prescriptions, get them out and take them.
One more spoon.
On a good day, maybe just one spoon for breakfast and getting dressed and another spoon to drive to work.
There are eight spoons left. If you have a high level job it may take two spoons to get through to lunch.
Before you waste that energy on getting lunch, better go through your afternoon to make sure you'll have enough spoons to get home, take meds, fix dinner, clean up a bit, take nighttime meds and go to bed.
If you run out, you've hit the wall and will have to have someone come and take care of you.
Sometimes you get through a day fine.
Some days there aren't enough spoons.
The blog on the link tells it so much better, but even my husband will ask if I think I can go somewhere or do something with my friends without collapsing.
Between you and me, I hate it when he's right, and he is more and more often.
Saturday, September 26, 2015
This Is My Life: 40 Years of RA
I never thought it strange that every day after I got home from junior high school I would wind up sitting on my bed with heating pads wrapped around my knees.
When you walked into my bedroom, it didn't smell like lavender, scented candles or my favorite air freshener, but the wintergreen liniment on my knees under those heating pads.
I'd do homework and practice my flute or piccolo sitting in the middle of my bed.
Sometimes I'd go to school with both knees wrapped in Ace Bandages.
Puberty hit and I had the same highs and lows as all my friends. My older brothers called me "Niagara," because I cried all the time.
My chores at home were fairly light. I had to do the breakfast dishes every morning and on Saturday mornings help my mom clean the house and change the sheets. I didn't mind, but after washing the dishes I'd get the some strange pain across my lower back that I also got while changing bed sheets.
High School wasn't much different from junior high but there were two stories in my high school and that meant stairs. I came to hate those. And I was in marching band, so those ace bandages were just the thing under uniform trousers and jeans.
I started getting strep throat. First it was twice a year, then three times a year and by my senior year I was getting it again as soon as the antibiotics from the last bout wore off.
All this time I was getting cavities. No matter how I brushed, flossed and polished my teeth, I always needed fillings.
I had trouble going to sleep. I could get to the very first stage of sleep, sort of dozing, but rarely got the restful kind. I thought that too was just part of growing up.
I knew I had a little more wrong with me than my three brothers or any of my friends, but I blew if off.
It was my father who put all the puzzle pieces together and sent me to a rheumatologist.
It was a sunny September morning in 1974 when I walked into Dr. Payne's office (no kidding, his name was Dr. Payne) and the tests started. I was measured all kinds of ways, blood and X-Rays were taken. I left for lunch and came back that afternoon for more tests and a lot of paper work.
About 3:30 p.m., I walked into Dr. Payne's office and sat down. He had a manila folder in front of him with my name on it.
He wasted no time.
"You cry all the time. You are sick all time. Your friends and maybe some members of your family think you are a hypochondriac. You are not. You are sick."
Every single thing he said was true. It was like he read my mind.
"Your disease has a name and we can treat it."
He explained that "Rheumatoid Spondylitis, Female Variant, Strep Sensitive," was a form of rheumatoid arthritis. There was no cure for it but he could give me several prescription drugs that would help me feel better.
He took time to talk to me about what was going on in my body. He showed me the X-Rays of my lower back where a few shadows were what was causing that funny twinge in my back.
He gave me a weak-strength antibiotic to keep strep throat and any other disease at bay.
He gave me some tablet to take that would help me get into a deeper sleep.
It all helped. No more strep throat and interestingly enough, no more cavities.
I discovered the sleeping tablets were muscle relaxers and I had to take them four hours before I needed to sleep.
Those drugs got me through college.
As an ironic added bonus, my diagnosis qualified me for help with college tuition and fees, so my last two years of college were free.
The name of my disease changed over the years as researchers make breakthroughs.
My hypochondria is Fibromyalgia. I have Chronic Fatigue Syndrome which causes sleep disorders and terrible tiredness. My blood is causing me all kinds of problems. Sometimes I test positive for Lupus. When I am really sick I get very close to having a slow developing but easily treatable form of leukemia.
My back is where the real problem is. While my knees and hips still hurt, especially when the weather changes, my back and neck vertebrae are a wreck. I have back braces that help with pain and stability and all kinds of pillows for my neck.
I take a few more pills now than I did in 1974 and I don't get around nearly as well, but I am grateful my disease was caught so early I have never had any surgery or ever spent the night in a hospital.
Right now I am sitting in the middle of my king-size Sleep Number bed writing this on a tablet complete with a click-on keyboard that I love.
All that is missing is the smell of wintergreen liniment..
When you walked into my bedroom, it didn't smell like lavender, scented candles or my favorite air freshener, but the wintergreen liniment on my knees under those heating pads.
I'd do homework and practice my flute or piccolo sitting in the middle of my bed.
Sometimes I'd go to school with both knees wrapped in Ace Bandages.
Puberty hit and I had the same highs and lows as all my friends. My older brothers called me "Niagara," because I cried all the time.
My chores at home were fairly light. I had to do the breakfast dishes every morning and on Saturday mornings help my mom clean the house and change the sheets. I didn't mind, but after washing the dishes I'd get the some strange pain across my lower back that I also got while changing bed sheets.
High School wasn't much different from junior high but there were two stories in my high school and that meant stairs. I came to hate those. And I was in marching band, so those ace bandages were just the thing under uniform trousers and jeans.
I started getting strep throat. First it was twice a year, then three times a year and by my senior year I was getting it again as soon as the antibiotics from the last bout wore off.
All this time I was getting cavities. No matter how I brushed, flossed and polished my teeth, I always needed fillings.
I had trouble going to sleep. I could get to the very first stage of sleep, sort of dozing, but rarely got the restful kind. I thought that too was just part of growing up.
I knew I had a little more wrong with me than my three brothers or any of my friends, but I blew if off.
It was my father who put all the puzzle pieces together and sent me to a rheumatologist.
It was a sunny September morning in 1974 when I walked into Dr. Payne's office (no kidding, his name was Dr. Payne) and the tests started. I was measured all kinds of ways, blood and X-Rays were taken. I left for lunch and came back that afternoon for more tests and a lot of paper work.
About 3:30 p.m., I walked into Dr. Payne's office and sat down. He had a manila folder in front of him with my name on it.
He wasted no time.
"You cry all the time. You are sick all time. Your friends and maybe some members of your family think you are a hypochondriac. You are not. You are sick."
Every single thing he said was true. It was like he read my mind.
"Your disease has a name and we can treat it."
He explained that "Rheumatoid Spondylitis, Female Variant, Strep Sensitive," was a form of rheumatoid arthritis. There was no cure for it but he could give me several prescription drugs that would help me feel better.
He took time to talk to me about what was going on in my body. He showed me the X-Rays of my lower back where a few shadows were what was causing that funny twinge in my back.
He gave me a weak-strength antibiotic to keep strep throat and any other disease at bay.
He gave me some tablet to take that would help me get into a deeper sleep.
It all helped. No more strep throat and interestingly enough, no more cavities.
I discovered the sleeping tablets were muscle relaxers and I had to take them four hours before I needed to sleep.
Those drugs got me through college.
As an ironic added bonus, my diagnosis qualified me for help with college tuition and fees, so my last two years of college were free.
The name of my disease changed over the years as researchers make breakthroughs.
My hypochondria is Fibromyalgia. I have Chronic Fatigue Syndrome which causes sleep disorders and terrible tiredness. My blood is causing me all kinds of problems. Sometimes I test positive for Lupus. When I am really sick I get very close to having a slow developing but easily treatable form of leukemia.
My back is where the real problem is. While my knees and hips still hurt, especially when the weather changes, my back and neck vertebrae are a wreck. I have back braces that help with pain and stability and all kinds of pillows for my neck.
I take a few more pills now than I did in 1974 and I don't get around nearly as well, but I am grateful my disease was caught so early I have never had any surgery or ever spent the night in a hospital.
Right now I am sitting in the middle of my king-size Sleep Number bed writing this on a tablet complete with a click-on keyboard that I love.
All that is missing is the smell of wintergreen liniment..
Friday, September 25, 2015
Water, water everywhere
Every time I see a commercial or program featuring scuba diving, my heart hurts.
There is nothing I like better than being weightless underwater, looking at beautiful coral, fish and other sea creatures going about their daily lives.
With a fragile spine and a bad case of chronic fatigue, I'm no longer healthy enough to suit up and spend some time in the closest place to Heaven I've been.
I am still a good swimmer. My family grew up swimming the clear rivers of Arkansas and Missouri and in swimming pools in my native Oklahoma.
We had a family membership at our YMCA and I took, and passed every swimming class they offered. I dabbled in water ballet and basically lived in the water.
As I got older I swam laps. A boyfriend's mother taught me to water ski in a local lake.
It was then the first of the symptoms of my disease presented itself.
After an afternoon of skiing and riding in the boat with my boyfriend and his family, I discovered I couldn't hold a glass in either hand without it shaking. My hands felt weak.
The next time that happened was in a self-service car wash. Holding the wand that shot high-powered water onto my car caused the same symptom.
Both instances were signals to stop doing both.
I could still swim though and nothing was more fun for me than being in the water.
In my twenties, I learned to scuba dive. My practice husband had already taken a class and was certified. He was a police officer and got me into an intense short class with firemen and other policemen. It was taught by Oklahoma City Fire Department's Dive Master at his assigned fire station and in his parents' swimming pool.
With my swimming background I passed easily. I only had one problem. I hated diving in Oklahoma lakes, most of which are man made and murky.
I used a lot of air in my open water dives, but I passed the class.
My husband and I booked a trip to Cozumel, Mexico, to try out our diving skills.
My first glimpse at that underwater world was amazing. The colorful coral and fish. The absolute clarity of the water.
It was like swimming in God's aquarium.
I was home.
Scuba divers travel with buddies and my husband/buddy was running low on air and needed to go up to the dive boat. I checked my air and had more than half a tank left.
Another couple had the same problem, so we switched. My new partner was another woman. We swam around and enjoyed ourselves until our time ran out and we came up together. I still had a quarter tank left.
I was an active diver for well over 10 years until my life changed dramatically.
My practice husband and I divorced. I still got to dive on a few cruises I went on as a travel writer.
Then, my body went into its first full flare. My RA, Chronic Fatigue, Fibromyalgia, all of it, decided to have a convention in my body. I was miserable. I learned about back braces, infusions, genetic testing and the good and bad things steroids can do to you.
Any thought of doing anything on vacation but rest was impossible.
That went on for years.
There were a few months here and there where I thought I might be feeling better and I'd go visit someone. I don't think anyone I saw counted on a visitor who could sleep for 12 or 13 hours at a stretch and then want an afternoon nap.
Any time spent in the water then meant time in a not tub.
The last time I went diving was in May, 1997. I was on a cruise that stopped in Cozumel. I was alone and was assigned a buddy, and it turned out I was the most experienced diver there.
It was as awesome as I remembered. I think if I had known it was the last time I might have savored it more.
I went in and out of flares until 2006, when I was so sick I finally had to leave my job and go out on disability.
It's nine years later.
The damage done to my spine makes it really inadvisable for me to try to dive again and that kills me.
I actually dream about diving, but in my dreams I wear no equipment and can breathe underwater.
I can still swim laps but the only stroke I can do without pain is the breast stroke. I can float on my back and kick but using my arms hurts too much to do.
I do enjoy just floating on my back. With my whole body cradled in the water, if they could, my joints and vertebrae would sigh in pleasure.
So would I, if I could just go diving a few more times.
There is nothing I like better than being weightless underwater, looking at beautiful coral, fish and other sea creatures going about their daily lives.
With a fragile spine and a bad case of chronic fatigue, I'm no longer healthy enough to suit up and spend some time in the closest place to Heaven I've been.
I am still a good swimmer. My family grew up swimming the clear rivers of Arkansas and Missouri and in swimming pools in my native Oklahoma.
We had a family membership at our YMCA and I took, and passed every swimming class they offered. I dabbled in water ballet and basically lived in the water.
As I got older I swam laps. A boyfriend's mother taught me to water ski in a local lake.
It was then the first of the symptoms of my disease presented itself.
After an afternoon of skiing and riding in the boat with my boyfriend and his family, I discovered I couldn't hold a glass in either hand without it shaking. My hands felt weak.
The next time that happened was in a self-service car wash. Holding the wand that shot high-powered water onto my car caused the same symptom.
Both instances were signals to stop doing both.
I could still swim though and nothing was more fun for me than being in the water.
In my twenties, I learned to scuba dive. My practice husband had already taken a class and was certified. He was a police officer and got me into an intense short class with firemen and other policemen. It was taught by Oklahoma City Fire Department's Dive Master at his assigned fire station and in his parents' swimming pool.
With my swimming background I passed easily. I only had one problem. I hated diving in Oklahoma lakes, most of which are man made and murky.
I used a lot of air in my open water dives, but I passed the class.
My husband and I booked a trip to Cozumel, Mexico, to try out our diving skills.
My first glimpse at that underwater world was amazing. The colorful coral and fish. The absolute clarity of the water.
It was like swimming in God's aquarium.
I was home.
Scuba divers travel with buddies and my husband/buddy was running low on air and needed to go up to the dive boat. I checked my air and had more than half a tank left.
Another couple had the same problem, so we switched. My new partner was another woman. We swam around and enjoyed ourselves until our time ran out and we came up together. I still had a quarter tank left.
I was an active diver for well over 10 years until my life changed dramatically.
My practice husband and I divorced. I still got to dive on a few cruises I went on as a travel writer.
Then, my body went into its first full flare. My RA, Chronic Fatigue, Fibromyalgia, all of it, decided to have a convention in my body. I was miserable. I learned about back braces, infusions, genetic testing and the good and bad things steroids can do to you.
Any thought of doing anything on vacation but rest was impossible.
That went on for years.
There were a few months here and there where I thought I might be feeling better and I'd go visit someone. I don't think anyone I saw counted on a visitor who could sleep for 12 or 13 hours at a stretch and then want an afternoon nap.
Any time spent in the water then meant time in a not tub.
The last time I went diving was in May, 1997. I was on a cruise that stopped in Cozumel. I was alone and was assigned a buddy, and it turned out I was the most experienced diver there.
It was as awesome as I remembered. I think if I had known it was the last time I might have savored it more.
I went in and out of flares until 2006, when I was so sick I finally had to leave my job and go out on disability.
It's nine years later.
The damage done to my spine makes it really inadvisable for me to try to dive again and that kills me.
I actually dream about diving, but in my dreams I wear no equipment and can breathe underwater.
I can still swim laps but the only stroke I can do without pain is the breast stroke. I can float on my back and kick but using my arms hurts too much to do.
I do enjoy just floating on my back. With my whole body cradled in the water, if they could, my joints and vertebrae would sigh in pleasure.
So would I, if I could just go diving a few more times.
Thursday, September 24, 2015
RA: A Learning Process
I honestly hate the word "No."
It's not necessary to explain the reasons behind my hatred but "No" is a word that encases you in walls, shrinks your world and can make you feel five years old again.
The saddest thing about it for people with rheumatoid arthritis and all those auto-immune diseases is that it is necessary.
I've been dealing with all my diseases since I was a teenager and "No" to a teenage is usually interpreted as "Yes."
When my doctor gave me my first list of "Nos" I was horrified.
I was not to run, ski (snow or water), left heavy things, be stressed.
The list itself was stressful.
Long story short, I did everything but snow ski, not because I didn't hate the chance, but because I hate being cold.
As the decades passed and different diseases reared their ugly heads either one at a time or a mixture of all of them, I learned that "No" could come in handy and eventually embraced it as a friend.
First, I learned I wasn't Superwoman. I did not come from Krypton and I have no special powers. I cannot help every friend I have with every problem they have. That's what their other friends are for.
I have a very small number of friends now that I will do everything in my limited power to help but I also have had to learn to tell them when I don't feel well enough to do anything.
Next, I had to learn that when my doctor prescribed medicine for me that I should take it, and keep taking it unless side effects were bad.
Like most people who have RA or any disease that causes continual pain, I started taking medicines for it. I started with aspirin. Over the years I worked my way through stronger and stronger drugs. I did the reading and there came a time I was afraid to take them. By not taking them I learned an important thing.
They do no good in the bottle. Take them unless the side effects are bad, and if that is the case, work with your doctor to find something that will work.
The next big lesson I learned with my husband's help.
Know your limits.
I used to work 10 and 12 hour days, 10 to 12 days at a time. I would be way beyond tired and got sicker and sicker.
I had to learn to stop.
This was the hardest thing for me. Be reining myself in, I had to admit I had a disease that was only going to get better if I let my body have some time to rest.
I married my husband while I was in a major flare. He saw how no one in my office was going to stop me from working because it benefitted them.
He quickly learned to recognize the signs it was time for me to stop. I fought him until I wrecked a car because I fell asleep driving home.
I began to pay attention to my husband. I still get all gooey inside when I realized how much he loves me. He wanted me around for a long time and was not going to let me do any more damage.
Even now, no matter where we are, he can spot the moment when I need to leave, and we do it.
He calls it "Get home. Get prone."
How can you not love a person who does this for you?
As the decades passed, things got worse, my various diseases began to manifest themselves. My balance left me and I started to fall. I found myself using walls to keep my balance. I use elevators and ramps to keep from falling on stairs, which I did more than once.
In 2012 I tripped over my own foot walking down my own hallway. I fell and broke nine bones in my foot.
The first time I used a cane I felt everyone was staring at me. Maybe they did, but it really helped with my balance and later it helped ease the pain in my knees and hips.
I learned to use the aids designed to help me and feel no shame in using them. I have a grab bar in my bathtub. I use a trackball on my computer rather than a mouse.
If I'm traveling and must change planes, I use the wheelchair service offered to get me from gate to gate. It not only helps me get to my gate a little faster, it also helps me conserve energy. If I really feel bad, I'll ask for a wheelchair to meet me at check in and when my plane lands at my destination. You can call your airline before you leave and make arrangements in advance. It will make traveling easier and less stressful.
I asked for, and got, a handicap parking placard for my car. I may not look all that sick but there are days when I am so tired and in so much pain that it is a relief to have paring close by.
The hardest thing I had to learn was to ask for help. Oh man, the first few times I felt such shame at asking someone to put my suitcase in the overhead bin for me. I felt awful when I would ask the cashier at the grocery story if I could have help getting my groceries to my car.
Then, I saw something interesting. When I asked someone for help, they might have a slight smile as they helped. Some would ask if there was anything else they could do.
On planes, someone who saw me get help putting my suitcase up would offer to get it down for me, or even do it without asking.
I always thanked everyone for the help, but I started to think it made them feel good to help, which made me feel better about asking.
I'm sure I have a few more life lessons to learn, but right now, things are going pretty well.
It's not necessary to explain the reasons behind my hatred but "No" is a word that encases you in walls, shrinks your world and can make you feel five years old again.
The saddest thing about it for people with rheumatoid arthritis and all those auto-immune diseases is that it is necessary.
I've been dealing with all my diseases since I was a teenager and "No" to a teenage is usually interpreted as "Yes."
When my doctor gave me my first list of "Nos" I was horrified.
I was not to run, ski (snow or water), left heavy things, be stressed.
The list itself was stressful.
Long story short, I did everything but snow ski, not because I didn't hate the chance, but because I hate being cold.
As the decades passed and different diseases reared their ugly heads either one at a time or a mixture of all of them, I learned that "No" could come in handy and eventually embraced it as a friend.
First, I learned I wasn't Superwoman. I did not come from Krypton and I have no special powers. I cannot help every friend I have with every problem they have. That's what their other friends are for.
I have a very small number of friends now that I will do everything in my limited power to help but I also have had to learn to tell them when I don't feel well enough to do anything.
Next, I had to learn that when my doctor prescribed medicine for me that I should take it, and keep taking it unless side effects were bad.
Like most people who have RA or any disease that causes continual pain, I started taking medicines for it. I started with aspirin. Over the years I worked my way through stronger and stronger drugs. I did the reading and there came a time I was afraid to take them. By not taking them I learned an important thing.
They do no good in the bottle. Take them unless the side effects are bad, and if that is the case, work with your doctor to find something that will work.
The next big lesson I learned with my husband's help.
Know your limits.
I used to work 10 and 12 hour days, 10 to 12 days at a time. I would be way beyond tired and got sicker and sicker.
I had to learn to stop.
This was the hardest thing for me. Be reining myself in, I had to admit I had a disease that was only going to get better if I let my body have some time to rest.
I married my husband while I was in a major flare. He saw how no one in my office was going to stop me from working because it benefitted them.
He quickly learned to recognize the signs it was time for me to stop. I fought him until I wrecked a car because I fell asleep driving home.
I began to pay attention to my husband. I still get all gooey inside when I realized how much he loves me. He wanted me around for a long time and was not going to let me do any more damage.
Even now, no matter where we are, he can spot the moment when I need to leave, and we do it.
He calls it "Get home. Get prone."
How can you not love a person who does this for you?
As the decades passed, things got worse, my various diseases began to manifest themselves. My balance left me and I started to fall. I found myself using walls to keep my balance. I use elevators and ramps to keep from falling on stairs, which I did more than once.
In 2012 I tripped over my own foot walking down my own hallway. I fell and broke nine bones in my foot.
The first time I used a cane I felt everyone was staring at me. Maybe they did, but it really helped with my balance and later it helped ease the pain in my knees and hips.
I learned to use the aids designed to help me and feel no shame in using them. I have a grab bar in my bathtub. I use a trackball on my computer rather than a mouse.
If I'm traveling and must change planes, I use the wheelchair service offered to get me from gate to gate. It not only helps me get to my gate a little faster, it also helps me conserve energy. If I really feel bad, I'll ask for a wheelchair to meet me at check in and when my plane lands at my destination. You can call your airline before you leave and make arrangements in advance. It will make traveling easier and less stressful.
I asked for, and got, a handicap parking placard for my car. I may not look all that sick but there are days when I am so tired and in so much pain that it is a relief to have paring close by.
The hardest thing I had to learn was to ask for help. Oh man, the first few times I felt such shame at asking someone to put my suitcase in the overhead bin for me. I felt awful when I would ask the cashier at the grocery story if I could have help getting my groceries to my car.
Then, I saw something interesting. When I asked someone for help, they might have a slight smile as they helped. Some would ask if there was anything else they could do.
On planes, someone who saw me get help putting my suitcase up would offer to get it down for me, or even do it without asking.
I always thanked everyone for the help, but I started to think it made them feel good to help, which made me feel better about asking.
I'm sure I have a few more life lessons to learn, but right now, things are going pretty well.
Tuesday, September 22, 2015
Fifty Shades of Fine
Not many people want to know how you really feel.
"How are you?" is such an ingrained way to begin a conversation that "Fine," is the expected answer, no matter what is really going on.
Anyone with RA, Lupus, Fibromyalgia or any of the hundreds of other auto-immune diseases --especially the invisible ones -- knows all the ways to say "Fine."
I am an expert.
Most of my health problems are auto-immune and invisible.
My spine is slowly collapsing. I used to be 5'7." I was measured for the first time in years in my hematologist's office this month and I am now 5'4."
My spine specialist has offered to do surgery on my next and lower back. My total time of recovery from each surgery would total nearly 18 months, so I declined.
My knees, hips and shoulders hurt too, but so far none of those are bad enough for surgery.
Add that up and I have a pain management doctor who brilliantly takes care of me. Most days my pain levels are 2 to 5.
I have Fibromyalgia, Chronic Fatigue Syndrome, occasionally test positive for Lupus.
How do you explain that someone poking you in the arm to get your attention that it hurt really bad for like five minutes.
It stinks on ice that no matter how much sleep you get you wake up tired. It's even worse when you have no idea when your energy will run out and you are dead on your feet. You can't think clearly, you shouldn't drive but you do because you have to get home somehow.
Now, combine all these diseases and guess where it gets you.
Light years away from fine.
I had the perfect job for someone with these diseases. I covered concerts and movies, mostly at night. Because I could write reviews during or directly after an event and turn them in, I had extra time to crash at home.
I had time to learn life hacks. I found a makeup that I could put on and be TV ready in 5 minutes so I could sit at my desk and struggle right up until I did my stint on a local TV show to talk about entertainment.
For seven or so minutes I burned all the reserves of energy I had left to sound and look bright and enthusiastic for TV cameras. As soon as my bit was finished I grabbed my gear and went home.
Doing radio was much easier. By the end of my career as an entertainment writer I was doing those radio bits while lying in bed. I hung up the phone and slept a few more hours.
My rheumatologist/oncologist doctor I had managed to keep me on my feet and in my job for years. He watched my white cell count rise, my leukocytes and lymphocytes fall and finally scared me into doing something I should have done a few years before.
"If you keep up working like this you'll be dead in three months."
I quit my job of 17 years that day.
I was out on disability by 5 p.m. and while I miss my job like crazy even nine years later, I have been healthier than I thought possible during the lunch hours I slept in my car, or the weekends spent in bed.
There still are weekends I spend in bed, and sometimes, like this month, I was scared because my bloodwork was starting to look like it did nine years ago.
My hematologist has just told me that while my blood it's no better than it was nine years ago, it's no worse.
And that, my friends, is just fine.
"How are you?" is such an ingrained way to begin a conversation that "Fine," is the expected answer, no matter what is really going on.
Anyone with RA, Lupus, Fibromyalgia or any of the hundreds of other auto-immune diseases --especially the invisible ones -- knows all the ways to say "Fine."
I am an expert.
Most of my health problems are auto-immune and invisible.
My spine is slowly collapsing. I used to be 5'7." I was measured for the first time in years in my hematologist's office this month and I am now 5'4."
My spine specialist has offered to do surgery on my next and lower back. My total time of recovery from each surgery would total nearly 18 months, so I declined.
My knees, hips and shoulders hurt too, but so far none of those are bad enough for surgery.
Add that up and I have a pain management doctor who brilliantly takes care of me. Most days my pain levels are 2 to 5.
I have Fibromyalgia, Chronic Fatigue Syndrome, occasionally test positive for Lupus.
How do you explain that someone poking you in the arm to get your attention that it hurt really bad for like five minutes.
It stinks on ice that no matter how much sleep you get you wake up tired. It's even worse when you have no idea when your energy will run out and you are dead on your feet. You can't think clearly, you shouldn't drive but you do because you have to get home somehow.
Now, combine all these diseases and guess where it gets you.
Light years away from fine.
I had the perfect job for someone with these diseases. I covered concerts and movies, mostly at night. Because I could write reviews during or directly after an event and turn them in, I had extra time to crash at home.
I had time to learn life hacks. I found a makeup that I could put on and be TV ready in 5 minutes so I could sit at my desk and struggle right up until I did my stint on a local TV show to talk about entertainment.
For seven or so minutes I burned all the reserves of energy I had left to sound and look bright and enthusiastic for TV cameras. As soon as my bit was finished I grabbed my gear and went home.
Doing radio was much easier. By the end of my career as an entertainment writer I was doing those radio bits while lying in bed. I hung up the phone and slept a few more hours.
My rheumatologist/oncologist doctor I had managed to keep me on my feet and in my job for years. He watched my white cell count rise, my leukocytes and lymphocytes fall and finally scared me into doing something I should have done a few years before.
"If you keep up working like this you'll be dead in three months."
I quit my job of 17 years that day.
I was out on disability by 5 p.m. and while I miss my job like crazy even nine years later, I have been healthier than I thought possible during the lunch hours I slept in my car, or the weekends spent in bed.
There still are weekends I spend in bed, and sometimes, like this month, I was scared because my bloodwork was starting to look like it did nine years ago.
My hematologist has just told me that while my blood it's no better than it was nine years ago, it's no worse.
And that, my friends, is just fine.
Monday, September 21, 2015
No, (stifling a yawn) I'm not tired.
I've had a four-letter word thrown at me from the first day I visited a rheumatologist right up to a phone call I got earlier today.
It's "Rest."
A doctor told a 19-year-old girl she should try to get some rest every afternoon.
Being 19, I thought he meant maybe for a week or so, not every day for the rest of my life.
Looking back, I was fortunate.
The relentless fatigue that comes with rheumatoid arthritis and all of its cronies didn't begin to manifest with me until my 30s. Even then, though I knew I was tired, I couldn't say "No."
I had to learn the hard way when your body needs rest, it will get it.
I couldn't read a book without dozing off. I'd miss the end of movies and TV programs because I'd shut my eyes "Just for a second" during the last commercial break" before the big reveal.
I could fall asleep on an airplane before the safety lecture and not wake up until the wheels touched down.
I finally had to admit it. I needed to take control of this nasty thing called fatigue before I died trying to defy it.
First, I learned that stress is the kryptonite of rest. If you're stressing about anything, any rest you might have gotten is gone and fatigue takes back over.
I learned to say "No." It was hard but the time I gave myself by not doing something gave me time to finally use that four-letter-word.
I learned not to be home. If I really needed to take it easy, I stopped answering my door to all but family members. I screen my phone calls the same way. I have more uninterrupted time for me.
I stopped feeling guilty for missing parties of all kinds. I could send a gift, a card or call with an apology and still feel good. Everyone won.
Now, I pick what events I want to attend. I spend a week before doing nothing but resting, trying to maybe store up a little extra energy for the big day. I decide what time I want to arrive about how long I think I should stay. (This bit is flexible.)
I plan what I'm wearing days before so I can make sure they're clean and especially I know where they are so I don't worry about finding them while I'm getting ready.
If I can get a ride or get someone else to drive, that's one less stressful thing.
I start getting ready well before time to leave and am ready maybe 30 minutes before I need to leave.
It sounds like a lot of work, but it really does lessen the stress that is the biggest energy-sucking thing there is.
Even doing all this, there are days -- maybe the weather dropped in to say hello or your pain levels won't drop to levels that allow you to speak without clenched teeth --when fatigue wins.
You spend the day swaddled in blankets propped up on the couch if you can make it that far, and let your meds do their work.
RA is a tricky thing. No matter how hard we work to have energy to do things we must do, sometimes we have to just lie down and say whatever four-letter word comes to mind.
A PS-- It's seven hours later. I wrote this, saved it, put my head back and fell asleep. I'm posting it and going to bed. Some "rests" are longer than others.
It's "Rest."
A doctor told a 19-year-old girl she should try to get some rest every afternoon.
Being 19, I thought he meant maybe for a week or so, not every day for the rest of my life.
Looking back, I was fortunate.
The relentless fatigue that comes with rheumatoid arthritis and all of its cronies didn't begin to manifest with me until my 30s. Even then, though I knew I was tired, I couldn't say "No."
I had to learn the hard way when your body needs rest, it will get it.
I couldn't read a book without dozing off. I'd miss the end of movies and TV programs because I'd shut my eyes "Just for a second" during the last commercial break" before the big reveal.
I could fall asleep on an airplane before the safety lecture and not wake up until the wheels touched down.
I finally had to admit it. I needed to take control of this nasty thing called fatigue before I died trying to defy it.
First, I learned that stress is the kryptonite of rest. If you're stressing about anything, any rest you might have gotten is gone and fatigue takes back over.
I learned to say "No." It was hard but the time I gave myself by not doing something gave me time to finally use that four-letter-word.
I learned not to be home. If I really needed to take it easy, I stopped answering my door to all but family members. I screen my phone calls the same way. I have more uninterrupted time for me.
I stopped feeling guilty for missing parties of all kinds. I could send a gift, a card or call with an apology and still feel good. Everyone won.
Now, I pick what events I want to attend. I spend a week before doing nothing but resting, trying to maybe store up a little extra energy for the big day. I decide what time I want to arrive about how long I think I should stay. (This bit is flexible.)
I plan what I'm wearing days before so I can make sure they're clean and especially I know where they are so I don't worry about finding them while I'm getting ready.
If I can get a ride or get someone else to drive, that's one less stressful thing.
I start getting ready well before time to leave and am ready maybe 30 minutes before I need to leave.
It sounds like a lot of work, but it really does lessen the stress that is the biggest energy-sucking thing there is.
Even doing all this, there are days -- maybe the weather dropped in to say hello or your pain levels won't drop to levels that allow you to speak without clenched teeth --when fatigue wins.
You spend the day swaddled in blankets propped up on the couch if you can make it that far, and let your meds do their work.
RA is a tricky thing. No matter how hard we work to have energy to do things we must do, sometimes we have to just lie down and say whatever four-letter word comes to mind.
A PS-- It's seven hours later. I wrote this, saved it, put my head back and fell asleep. I'm posting it and going to bed. Some "rests" are longer than others.
Tired. Exhausted. Fatigued. Go!
There's tired, there's exhaustion and there's fatigue.
Healthy people are pleasantly tired after a day of outdoor activities -- volleyball, swimming, skiing, taking a jog along the beach at sunset.
A good night's sleep and they can get up and do it again.
Now if that same person were -- with no training -- to take on an Iron Man Triathlon. They'd be exhausted, but with a few days rest be back to normal.
Imagine waking up every morning feeling like you'd been in that triathlon.
Your eyes open in the morning but your brain is begging them to close again and go back to sleep.
Sadly, even if you do, when you do finally keep your eyes open the rest of your body is still tired. You could do nothing but stay home and rest for days at a time and still be tired.
That's fatigue.
Every morning I fight the battle of either getting up or going back to sleep. Sometimes I win, others I sleep.
I turn the TV on. I take my morning meds. I might be awake to see the morning shows, maybe not. I might sleep through both episodes of "The Gilmore Girls" or get cozy in bed and watch.
I'm generally awake by the noon news.
It's then when I make up my mind to get dressed. My one promise to myself is to take off my pajamas and put on clothes every day.
It's my little victory that I can leave the house if I want to.
Many days, getting dressed is as far as it goes. I fire up by computer, check e-mail and Facebook and play a few games before I become contestant number four on "Jeopardy."
I keep my mind as sharp as I can by matching wits with the three contestants who are actually playing for money. Sometimes I think the board is impossible, sometimes it seems easy.
There are days I sleep through my favorite game show. I don't mean to, one minute I'm waiting for it to come one, the next I'm waking up to the news.
Other decisions await. Do I have the energy to make dinner? If I do, am I capable of cleaning up afterward?
After dinner, the pajamas come back on and I might try to read or watch more TV. I take my evening meds, watch a late night talk show the turn it to a channel that plays things that make me laugh and often fall asleep while they are on, only to run my marathon again the next day.
My friends finally understand I only have a limited amount of energy every day and some days I don't leave my house for things like happy hours, parties or get togethers.
Of course, sometimes I don't have the energy to put on clothes. The days I spend in my pajamas I feel guilty.
Maybe watching someone else run an Iron Man Marathon would make me feel better. Then again, it might just make me more tired.
Healthy people are pleasantly tired after a day of outdoor activities -- volleyball, swimming, skiing, taking a jog along the beach at sunset.
A good night's sleep and they can get up and do it again.
Now if that same person were -- with no training -- to take on an Iron Man Triathlon. They'd be exhausted, but with a few days rest be back to normal.
Imagine waking up every morning feeling like you'd been in that triathlon.
Your eyes open in the morning but your brain is begging them to close again and go back to sleep.
Sadly, even if you do, when you do finally keep your eyes open the rest of your body is still tired. You could do nothing but stay home and rest for days at a time and still be tired.
That's fatigue.
Every morning I fight the battle of either getting up or going back to sleep. Sometimes I win, others I sleep.
I turn the TV on. I take my morning meds. I might be awake to see the morning shows, maybe not. I might sleep through both episodes of "The Gilmore Girls" or get cozy in bed and watch.
I'm generally awake by the noon news.
It's then when I make up my mind to get dressed. My one promise to myself is to take off my pajamas and put on clothes every day.
It's my little victory that I can leave the house if I want to.
Many days, getting dressed is as far as it goes. I fire up by computer, check e-mail and Facebook and play a few games before I become contestant number four on "Jeopardy."
I keep my mind as sharp as I can by matching wits with the three contestants who are actually playing for money. Sometimes I think the board is impossible, sometimes it seems easy.
There are days I sleep through my favorite game show. I don't mean to, one minute I'm waiting for it to come one, the next I'm waking up to the news.
Other decisions await. Do I have the energy to make dinner? If I do, am I capable of cleaning up afterward?
After dinner, the pajamas come back on and I might try to read or watch more TV. I take my evening meds, watch a late night talk show the turn it to a channel that plays things that make me laugh and often fall asleep while they are on, only to run my marathon again the next day.
My friends finally understand I only have a limited amount of energy every day and some days I don't leave my house for things like happy hours, parties or get togethers.
Of course, sometimes I don't have the energy to put on clothes. The days I spend in my pajamas I feel guilty.
Maybe watching someone else run an Iron Man Marathon would make me feel better. Then again, it might just make me more tired.
Friday, January 17, 2014
Bills or pills? Which to choose?
It's the subject no one wants to confront.
Pride keeps many of us from talking about it, but those of us who live on Social Security, either retirement or disability, often find ourselves making decisions on what bills get paid this month, and more problematic to those of us with chronic illnesses, which pills to buy.
Glib professionals tell people like us that "there's always help."
I'm not finding it.
I'm lucky enough to have affordable insurance and a small long-term disability check, but the day my Social Security check hits the bank, the worrying starts and doesn't stop until the next check arrives.
I pay for the things that are necessary: electricity, natural gas, water and garbage service, cable (TV, Internet, landline), cell phone (dumbest smart phone on the market), health and car insurance. What's left over has to cover food, all my drugs, the co-pays to the doctors I have to see to get those prescriptions, gas for the car, food for my pets.
It's then the real praying starts.
Please let the car keep running. Please keep the pets healthy. Please no emergencies.
I have a stack of overdue bills from labs and hospitals for tests that were necessary. My insurance has paid what it will, but I can't afford to pony up the difference. I don't answer phone numbers I don't recognize because 99 percent of them are business offices or collection agencies and they can bully me all they want, there's no extra money to shut them up.
The money runs out anyway and it's time to line the bottles up and decide which medicines I can take every other day, which ones I can live without and how to survive on those decisions.
Of course, there are those prescriptions that get filled no matter what, the ones you literally cannot live without.
If you have insurance, it's hard to get drug companies or pharmacies to give you the bigger discounts they so magnanimously offer on their commercials, and heaven forbid your doctor adds new drugs to your regime because you've got to at least try those.
The first month or so the doctor might have samples to give you, but after that, it's one more drug that goes in the line. And generally, the new drugs I get are new on the market and are the most expensive.
Most months I manage to afford all my meds because I've been working odd jobs here and there but I can't work too much or I'll get sicker and need more drugs, and again, there's that pesky cap on what I can make because I am on Social Security disability.
Then there are the months when the gas tank is on empty, the cupboards are bare, and there are no drugs in most bottles and it's 10 days until monetarily relief arrives.
Add ulcer medication (wait, I'm already on that).
My husband and I have sold our books, movies, music, and games and no blood bank in America will stick a needle in either of our arms.
In the summer, we stay at home a lot, shades pulled, trying not to move much to keep the air conditioning from coming on. In the winter we bury ourselves under blankets and try to stay warm.
Did I mention I make $30 too much to qualify for food stamps?
We don't go out unless the event is free, and presents for special occasions stopped years ago. Our Christmas tree is a foot-tall metal spiral bought half -price at a discount store years ago.
We own our home so we don't qualify for any aid for it. And while downsizing sounds like a plan, selling this house won't get us enough money to buy another house anywhere and our credit is so poor we'll never qualify for a mortgage. We can't make improvements because first we can't afford them and second, we are both too disabled to do any of them. We're not even sure how we could even move into another house if by some miracle we got a smaller one.
We're already on bill averaging with all the utilities and shop at the cheapest stores in town.
The scariest thing about this story is we are nowhere near alone.
Millions of us are out here, playing medical roulette, slipped neatly between the cracks of those who have enough money and those who can get help from the government and charities.
We get by. We don't have a choice, but the slightest thing will send us over the edge. When it rains I worry about flooding or severe weather damaging the house because we gave up our house insurance years ago.
Our car is insured because it's the only car we have and it's the law. We don't want to consider what will happen when it breaks down.
It's a terrible thing to be told to avoid stress and have nothing else but that in your life. It eats into everything you do, weighs on your shoulders affects every relationship.
Yes, there are people worse off that we are, and like us, they sit in their homes and pray they can make it until the next check.
I'm sure most people who know me and read this will be shocked at some of this, but if you are familiar with this predicament, you aren't able to talk about it without crying from shame that you have somehow failed.
I have to hope that things will get better soon, but there are days I don't see how.
Pride keeps many of us from talking about it, but those of us who live on Social Security, either retirement or disability, often find ourselves making decisions on what bills get paid this month, and more problematic to those of us with chronic illnesses, which pills to buy.
Glib professionals tell people like us that "there's always help."
I'm not finding it.
I'm lucky enough to have affordable insurance and a small long-term disability check, but the day my Social Security check hits the bank, the worrying starts and doesn't stop until the next check arrives.
I pay for the things that are necessary: electricity, natural gas, water and garbage service, cable (TV, Internet, landline), cell phone (dumbest smart phone on the market), health and car insurance. What's left over has to cover food, all my drugs, the co-pays to the doctors I have to see to get those prescriptions, gas for the car, food for my pets.
It's then the real praying starts.
Please let the car keep running. Please keep the pets healthy. Please no emergencies.
I have a stack of overdue bills from labs and hospitals for tests that were necessary. My insurance has paid what it will, but I can't afford to pony up the difference. I don't answer phone numbers I don't recognize because 99 percent of them are business offices or collection agencies and they can bully me all they want, there's no extra money to shut them up.
The money runs out anyway and it's time to line the bottles up and decide which medicines I can take every other day, which ones I can live without and how to survive on those decisions.
Of course, there are those prescriptions that get filled no matter what, the ones you literally cannot live without.
If you have insurance, it's hard to get drug companies or pharmacies to give you the bigger discounts they so magnanimously offer on their commercials, and heaven forbid your doctor adds new drugs to your regime because you've got to at least try those.
The first month or so the doctor might have samples to give you, but after that, it's one more drug that goes in the line. And generally, the new drugs I get are new on the market and are the most expensive.
Most months I manage to afford all my meds because I've been working odd jobs here and there but I can't work too much or I'll get sicker and need more drugs, and again, there's that pesky cap on what I can make because I am on Social Security disability.
Then there are the months when the gas tank is on empty, the cupboards are bare, and there are no drugs in most bottles and it's 10 days until monetarily relief arrives.
Add ulcer medication (wait, I'm already on that).
My husband and I have sold our books, movies, music, and games and no blood bank in America will stick a needle in either of our arms.
In the summer, we stay at home a lot, shades pulled, trying not to move much to keep the air conditioning from coming on. In the winter we bury ourselves under blankets and try to stay warm.
Did I mention I make $30 too much to qualify for food stamps?
We don't go out unless the event is free, and presents for special occasions stopped years ago. Our Christmas tree is a foot-tall metal spiral bought half -price at a discount store years ago.
We own our home so we don't qualify for any aid for it. And while downsizing sounds like a plan, selling this house won't get us enough money to buy another house anywhere and our credit is so poor we'll never qualify for a mortgage. We can't make improvements because first we can't afford them and second, we are both too disabled to do any of them. We're not even sure how we could even move into another house if by some miracle we got a smaller one.
We're already on bill averaging with all the utilities and shop at the cheapest stores in town.
The scariest thing about this story is we are nowhere near alone.
Millions of us are out here, playing medical roulette, slipped neatly between the cracks of those who have enough money and those who can get help from the government and charities.
We get by. We don't have a choice, but the slightest thing will send us over the edge. When it rains I worry about flooding or severe weather damaging the house because we gave up our house insurance years ago.
Our car is insured because it's the only car we have and it's the law. We don't want to consider what will happen when it breaks down.
It's a terrible thing to be told to avoid stress and have nothing else but that in your life. It eats into everything you do, weighs on your shoulders affects every relationship.
Yes, there are people worse off that we are, and like us, they sit in their homes and pray they can make it until the next check.
I'm sure most people who know me and read this will be shocked at some of this, but if you are familiar with this predicament, you aren't able to talk about it without crying from shame that you have somehow failed.
I have to hope that things will get better soon, but there are days I don't see how.
Saturday, October 12, 2013
Unbalanced.
I have terrible balance. I have trouble standing on both feet in my back yard and looking up to see the stars. I sway like a palm tree in trade winds. I cannot stand on one foot for any reason without holding on to something.
I fall a lot -- a few years ago I somehow stubbed a toe on the hallway carpet and pretty much folded my foot in half and then fell on it. I broke nine bones.
I have fallen walking up stairs as well as going down. I have baptized myself with soda as I fell with a drink in my hand. I've had to quit wearing any kind of high heel because my ankles bend so easily that it's guaranteed I will fall.
I fell in the waiting room of a doctor's office when I got up after my name was called. That got me some spectacular bruises and some very worried doctors who were afraid I would sue them.
Over the years I have learned how to fall, and how to survive the aftermath.
It's a matter of perspective. I could feel sorry for myself and have a pity party because my balance is shot and my weakened joints makes falling a regular occurrence, or I can laugh about how ridiculous I look.
Case in point: I used to cover all the entertainment events at the National Cowboy and Western Heritage Museum. It's a beautiful place loaded with western art, a Rodeo Hall of Fame, the Hall of Great Western Performers and a lovely area full of memorabilia from movie and TV Westerns.
John Wayne is well represented there, as is Jimmy Stewart, Glenn Ford, James Arness and modern actors like David, Keith and Robert Carradine, James Garner, Ernest Borgnine, Tommy Lee Jones and Tom Selleck.
Every year actors get added to that list when the museum has its Wrangler Awards. They're given for literature, music, movies, TV shows and mini-series as well as the men and women who own and run ranches throughout the West.
It's a two-day event. The first night is a meet and greet cocktail party so the honorees can mingle with museum patrons who bought tickets. The second night is a formal dinner where the statues are presented.
Cowboy hats and boots are worn with tuxedos while the ladies put on their red carpet-worthy gowns and their good jewelry.
Before the dinner the media gets a chance to interview all the award recipients in a VIP room. Cameras of all sorts are set up, notebooks are out and notes taken. The media also gets to dress for this night, including me.
One year I was wearing a sapphire blue, floor length strapless gown when I caught the hem of my dress on the tip of my shoe.
Down I went, flat on my face. It was one of those horrible moments when all talking ceases and everyone, movie stars included, had their eyes on the woman flat on the floor.
It was totally humiliating, but in that split second I knew everything depended on my reaction-- kind of like when a toddler falls down and looks around to see whether he needs to cry or just get up and keep toddling.
I decided to get up and laugh if off. Thank heaven, nothing was hurt but my pride and when I started laughing, everyone continued their conversations and my husband and an actor helped me back on my feet.
The saving grace for me was that Mr. Selleck wasn't in the room. I had just regained my footing when he walked in and I promptly walked over to him and started asking him questions about the project that garnered him a Wrangler.
I also counted my blessings that nothing popped out of the top of the gown. The dress fit so well that nothing moved.
Several years earlier the late Charlton Heston was being honored and I caught him as he and his wife entered the museum.
I promised the legendary actor that if would give me about 10 minutes right then I wouldn't bother him the rest of the event and he kindly obliged.
I set my drink down by my right shoe and started asking questions. He was nice and gave me some great material to include in my main story. I have to admit I was pretty much star struck to be standing a foot away from the man who played Moses and Ben Hur.
As we wound up our interview I was thanking him for his time when he interrupted me to remind me my drink was very close to my shoe.
I was so grateful. I know had he not pointed it out I would have knocked over the drink and the probably slipped on the slick floor.
I miss covering those galas because over the years I became friends with several actors who attended, and once got to save one of them by creating cuff links using silver conchos and leather strips.
Barry Corbin (probably best know as the astronaut in "Northern Exposure" was backstage panicking because he had forgotten to bring any cuff links and his shirt had French cuffs.
The conchos and leather strips had been used as napkin rings and I was able to fashion what turned out to be a great set with a little ingenuity and I made a friend in the process.
Wednesday, September 18, 2013
Sandi rants about addicts/sent
I have worked for years to appear to be a pretty calm person. Mostly I succeed but there is one subject that will set me off like a cruise missile.
I started treating my arthritis with aspirin, yes, plain ole aspirin, in the 1970s. It took decades for me to start taking any pain medications that were addictive, and I did my homework.
I know when you take a narcotic for its intended purpose it works to stop the pain. That's it. Yes, there are side effects but not the ones people expect. I don't get high.
This is where I get angry.
I know many people who get high on various plants and other illegal substances and that is their decision. It's when they start messing around with the drugs I need to get me though the day I get mad.
I'd give about a million bucks to find out what the high is like that a healthy person feels when they take a drug meant for me or someone with a condition that responds to that drug. It must be something else because they have stolen prescriptions from my purse, offered me money for them and when I say no, they found someone to say yes.
They abuse doctors, lie to pain clinics and get the very drugs that so many of us must have to function in any capacity so they can enjoy a few hours of some kind of escape.
Then, when they get caught, they are sorry. They go go rehab and do whatever they do there and most of the time they leave the facility and start right back up.
I would also like to trade bodies with these people so they can feel what I deal with all the time for five minutes. I want them to know that every illegal pill they take makes it that much harder for anyone with chronic pain to get them legally.
I go through the same tests now as someone who abuses drugs. I get random drug screenings that I have to pay for to prove I have those opiates in my system, that I didn't sell them to some person who thinks they need them more than me.
I've had to take my pill bottles in and have the pills counted in my presence to prove that I take them when I'm supposed to, that I don't double up on them or I don't know what.
I know the bottom line is addicts don't really give a flying f*** what I think or how I feel, they just want to be high and are as addicted to them as I am for the pain relief they give.
I live in a state with one of the highest opiate abuse rates in the nation, so I really have to keep my mouth shut in public about what I have and what I take. I can only get a 30 day supply at one time, show my ID when I drop off a script and when I pick it up. The state drug agency now has my name on a list somewhere because I am a regular user.
I've also discovered that my pharmacy has a limit to the those very drugs they can get each month. If I get there after their allocation is gone, I've got to start hitting other pharmacies, hoping they still have enough left for my prescription.
I don't appreciate this, and every time I see a celebrity entering rehab instead of jail for having drugs they shouldn't have, I get angrier.
What can I do? Nothing really. I just wanted to get this off my chest and hope someone who takes drugs because they're fun will look at this and realize those pills weren't made for them, that somewhere someone is writhing in pain because they can't get them.
And I hope they go straight to hell.
I started treating my arthritis with aspirin, yes, plain ole aspirin, in the 1970s. It took decades for me to start taking any pain medications that were addictive, and I did my homework.
I know when you take a narcotic for its intended purpose it works to stop the pain. That's it. Yes, there are side effects but not the ones people expect. I don't get high.
This is where I get angry.
I know many people who get high on various plants and other illegal substances and that is their decision. It's when they start messing around with the drugs I need to get me though the day I get mad.
I'd give about a million bucks to find out what the high is like that a healthy person feels when they take a drug meant for me or someone with a condition that responds to that drug. It must be something else because they have stolen prescriptions from my purse, offered me money for them and when I say no, they found someone to say yes.
They abuse doctors, lie to pain clinics and get the very drugs that so many of us must have to function in any capacity so they can enjoy a few hours of some kind of escape.
Then, when they get caught, they are sorry. They go go rehab and do whatever they do there and most of the time they leave the facility and start right back up.
I would also like to trade bodies with these people so they can feel what I deal with all the time for five minutes. I want them to know that every illegal pill they take makes it that much harder for anyone with chronic pain to get them legally.
I go through the same tests now as someone who abuses drugs. I get random drug screenings that I have to pay for to prove I have those opiates in my system, that I didn't sell them to some person who thinks they need them more than me.
I've had to take my pill bottles in and have the pills counted in my presence to prove that I take them when I'm supposed to, that I don't double up on them or I don't know what.
I know the bottom line is addicts don't really give a flying f*** what I think or how I feel, they just want to be high and are as addicted to them as I am for the pain relief they give.
I live in a state with one of the highest opiate abuse rates in the nation, so I really have to keep my mouth shut in public about what I have and what I take. I can only get a 30 day supply at one time, show my ID when I drop off a script and when I pick it up. The state drug agency now has my name on a list somewhere because I am a regular user.
I've also discovered that my pharmacy has a limit to the those very drugs they can get each month. If I get there after their allocation is gone, I've got to start hitting other pharmacies, hoping they still have enough left for my prescription.
I don't appreciate this, and every time I see a celebrity entering rehab instead of jail for having drugs they shouldn't have, I get angrier.
What can I do? Nothing really. I just wanted to get this off my chest and hope someone who takes drugs because they're fun will look at this and realize those pills weren't made for them, that somewhere someone is writhing in pain because they can't get them.
And I hope they go straight to hell.
Sunday, August 11, 2013
To be or not to be
Aunt Sandi reflects on a tough decision.
I admire mothers more than any other group.
It's a non-stop job from the moment your child is handed to you after birth and it never ends.
Long after you are gone, you live on in your children and their children. Stories about you will be told for generations, your precious possessions will be cherished by your descendants.
I made the toughest decision of my life in my early 30s.
I decided not to have any children.
My practice husband and I had always planned to wait until we were in our 30s to start a family and by the time we got there, our marriage was falling apart.
Most interestingly, our divorce had nothing to do with my decision.
Genetics did.
I had my first genetic panel done when I was 33, and that's when it was confirmed I have the gene that carries arthritis, asthma, allergies and multiple sclerosis and I had a 50/50 chance of passing it on.
In my mind I saw two scenarios, neither pretty.
First, my child would grow up with a sick mom. I had no way of guessing how sick I would get, but not being able to do things like pick them up or run and play on a playground was a hard one. Also, I had no way to gauge the toll pregnancy would take on my already battered body and damaged spine.
The clincher was the chance I'd have a baby who could develop one of the diseases on that gene. How do you explain to a two-year-old why they are in pain and if they would take this pill or that shot they would feel better?
One summer I spoke at a camp for children with rheumatoid arthritis so they could see that they too could have a fun job while dealing with this nasty disease. What got to me were the questions they asked me about the realities of living with arthritis.
"Did I cry when they stuck me with the needles for blood tests?"
"Did the people laugh at me when I fell asleep in class because I hadn't been able to sleep the night before?"
I showed them the big white dents in the crook of my arm and was able to give them some cold comfort: "After a few years of those blood tests, the nerves there will die and it won't hurt at all."
I told them not to be afraid to ask for help or to ride in a wheelchair when the pain was so bad.
After that visit, I thought about it a long time and finally decided to not roll those dice.
Though I don't have children of my own, I have nieces and nephews, both by blood and by love.
Perhaps because I have never had to truly grow up and take care of my own children, I am the go-to aunt for fun.
All my brothers' children have done some pretty cool things because Aunt Sandi pulled some strings. Once, a niece and nephew were the children picked from the audience to star in the pre-intermission extravaganza at a performance of Ringling Bros. and Barnum & Bailey Circus.
One niece went backstage at a Garth Brooks concert. Her brother met Brooks & Dunn.
Another has gone to movie screenings with me and another owns a personal message from Tigger himself, telling him to mind his parents and say his prayers before bed.
Every member of my family has personalized autographs from various movie stars, rock bands and other celebrities. They own merchandise from movies and concerts and have spent time sitting with me watching concerts while I write the review on my laptop. They were always cool about walking slower when I used a cane or to help carry things for me.
I love all my nieces and nephews, whether they're related to me or not and I cherish it when the one's who are not really related call me "Aunt Sandi" anyway.
I was able to do a lot of traveling and bring home cool things because I didn't have children of my own to worry about at home. Yes, many times it was a struggle to get myself home, but once there I didn't have to take care of a child before collapsing myself.
Still, I see parents with their children, creating memories and a tight-knit family while I watch on the outside.
My first husband remarried and now has children of his own. I am happy for him and enjoy hearing him tell me all about them. It's funny to me, but he tells them stories about me and the things I've done, so in a very modern way, I'm a member of their family too.
Now that I'm well past the age to have children, do I regret not doing it? Truthfully, not at all.
When I feel depressed I wonder what will happen to me when I can't take care of myself, if I will wind up in a nursing home, the lady with no visitors.
Better days I know I may wind up in a nursing home, but all my nieces and nephews will come visit because of all the stories I have about things I've done, and maybe because they consider me family.
Every person with any form of this disease will make this decision on their own, or it's already out of their hands. If they got sick after they had children, it's a moot point.
I know for many women, having children is an essential part of their lives and they are heroes to me, sick or well. I'm just glad so many of them have let me borrow their children from time to time so I could be "Aunt Sandi."
I admire mothers more than any other group.
It's a non-stop job from the moment your child is handed to you after birth and it never ends.
Long after you are gone, you live on in your children and their children. Stories about you will be told for generations, your precious possessions will be cherished by your descendants.
I made the toughest decision of my life in my early 30s.
I decided not to have any children.
My practice husband and I had always planned to wait until we were in our 30s to start a family and by the time we got there, our marriage was falling apart.
Most interestingly, our divorce had nothing to do with my decision.
Genetics did.
I had my first genetic panel done when I was 33, and that's when it was confirmed I have the gene that carries arthritis, asthma, allergies and multiple sclerosis and I had a 50/50 chance of passing it on.
In my mind I saw two scenarios, neither pretty.
First, my child would grow up with a sick mom. I had no way of guessing how sick I would get, but not being able to do things like pick them up or run and play on a playground was a hard one. Also, I had no way to gauge the toll pregnancy would take on my already battered body and damaged spine.
The clincher was the chance I'd have a baby who could develop one of the diseases on that gene. How do you explain to a two-year-old why they are in pain and if they would take this pill or that shot they would feel better?
One summer I spoke at a camp for children with rheumatoid arthritis so they could see that they too could have a fun job while dealing with this nasty disease. What got to me were the questions they asked me about the realities of living with arthritis.
"Did I cry when they stuck me with the needles for blood tests?"
"Did the people laugh at me when I fell asleep in class because I hadn't been able to sleep the night before?"
I showed them the big white dents in the crook of my arm and was able to give them some cold comfort: "After a few years of those blood tests, the nerves there will die and it won't hurt at all."
I told them not to be afraid to ask for help or to ride in a wheelchair when the pain was so bad.
After that visit, I thought about it a long time and finally decided to not roll those dice.
Though I don't have children of my own, I have nieces and nephews, both by blood and by love.
Perhaps because I have never had to truly grow up and take care of my own children, I am the go-to aunt for fun.
All my brothers' children have done some pretty cool things because Aunt Sandi pulled some strings. Once, a niece and nephew were the children picked from the audience to star in the pre-intermission extravaganza at a performance of Ringling Bros. and Barnum & Bailey Circus.
One niece went backstage at a Garth Brooks concert. Her brother met Brooks & Dunn.
Another has gone to movie screenings with me and another owns a personal message from Tigger himself, telling him to mind his parents and say his prayers before bed.
Every member of my family has personalized autographs from various movie stars, rock bands and other celebrities. They own merchandise from movies and concerts and have spent time sitting with me watching concerts while I write the review on my laptop. They were always cool about walking slower when I used a cane or to help carry things for me.
I love all my nieces and nephews, whether they're related to me or not and I cherish it when the one's who are not really related call me "Aunt Sandi" anyway.
I was able to do a lot of traveling and bring home cool things because I didn't have children of my own to worry about at home. Yes, many times it was a struggle to get myself home, but once there I didn't have to take care of a child before collapsing myself.
Still, I see parents with their children, creating memories and a tight-knit family while I watch on the outside.
My first husband remarried and now has children of his own. I am happy for him and enjoy hearing him tell me all about them. It's funny to me, but he tells them stories about me and the things I've done, so in a very modern way, I'm a member of their family too.
Now that I'm well past the age to have children, do I regret not doing it? Truthfully, not at all.
When I feel depressed I wonder what will happen to me when I can't take care of myself, if I will wind up in a nursing home, the lady with no visitors.
Better days I know I may wind up in a nursing home, but all my nieces and nephews will come visit because of all the stories I have about things I've done, and maybe because they consider me family.
Every person with any form of this disease will make this decision on their own, or it's already out of their hands. If they got sick after they had children, it's a moot point.
I know for many women, having children is an essential part of their lives and they are heroes to me, sick or well. I'm just glad so many of them have let me borrow their children from time to time so I could be "Aunt Sandi."
I've Got Friends in Low Places
Like millions of other fans, I love Garth Brooks.
His career choices put his family first, which is a rare thing. He retired, moved back to Oklahoma, lives in a Tulsa suburb where he shared raising his daughters with his former wife, marrying country star Trisha Yearwood in the meantime.
While we both worked, I would do phone interviews that wound up in teasing and laughter.
He invited my husband and I to his big party to celebrate selling 100 million records, thank his song writers and everyone who had helped him get where he was.
I got a hand-written invitation to come to the party as a guest, not a reporter. My husband and I made the trip to Nashville where hubby wore a tuxedo and I wore a ball gown. We walked down a real red carpet, complete with photographers snapping pictures.
We each got a crystal memento of the evening.
Garth called me on my 50th birthday. I didn't know he knew when my birthday was.
After I left the paper, I pretty must dropped off the face of the earth for five years while my body and mind did some serious healing.
I started freelancing early in 2012, mostly for the newspaper I had worked for.
After the tornadoes hit May 19-20, I was busy writing about the storms, and then the company I work for sent me an e-mail asking me to call a number if I wanted to review the Blake Shelton benefit concert.
It was USA Today.
I was thrilled. My byline would be seen nationwide.
They e-mailed me again and asked if I would review Toby Keith's Twister Relief Concert in the football stadium at the University of Oklahoma.
I couldn't say yes fast enough.
Besides Toby, performers included Carrie Underwood, Willie Nelson, Ronnie Dunn, Mel Tillis, John Anderson, Wade Hayes, Kellie Coffey, the only rocker Sammy Hagar and my old friend, Garth Brooks with his wife, whom he calls Miss Yearwood.
For the show, all reporters were kept in the room the Oklahoma Sooners football team have their meetings. The artists were brought in to talk to us and we watched the show on big screen TVs with a direct sound feed from the stage.
Garth was at the show long enough to play. He had to return to Las Vegas to play a sold-out show that night.
I'll admit I've changed a lot in the last five years but when I looked Garth in the eye and asked a question, he answered it without recognizing me. I was a little hurt, but not surprised.
As his time with the press wound down, I walked up to Garth's publicist and asked her if I could say "Hi" to him. She smiled, and said yes.
As he walked by, she said his name and then, "Sandi would like to say hi."
He looked at me and the second the recognized me he grabbed me in the biggest bear hug and kissed my cheek. He couldn't believe I was there.
"I wondered how you were."
About this time his wife hugged me too, kissed my other cheek and said she was glad to see me too.
All of this happened in front of the entire press corps. If they didn't know who I was before then, they knew I was something special after that.
I knew I was something special after that.
I worked 14 hours that day, had one-on-one interviews with Ronnie Dunn and Sammy Hagar, which I'll write about later, but it did more for my self worth than anything has for years.
A long review ran on USA today's site on Sunday and a shorter version ran in Monday's Life section.
If you'd like to donate to , please go to www.unitedwayokc.org
His career choices put his family first, which is a rare thing. He retired, moved back to Oklahoma, lives in a Tulsa suburb where he shared raising his daughters with his former wife, marrying country star Trisha Yearwood in the meantime.
While we both worked, I would do phone interviews that wound up in teasing and laughter.
He invited my husband and I to his big party to celebrate selling 100 million records, thank his song writers and everyone who had helped him get where he was.
I got a hand-written invitation to come to the party as a guest, not a reporter. My husband and I made the trip to Nashville where hubby wore a tuxedo and I wore a ball gown. We walked down a real red carpet, complete with photographers snapping pictures.
We each got a crystal memento of the evening.
Garth called me on my 50th birthday. I didn't know he knew when my birthday was.
After I left the paper, I pretty must dropped off the face of the earth for five years while my body and mind did some serious healing.
I started freelancing early in 2012, mostly for the newspaper I had worked for.
After the tornadoes hit May 19-20, I was busy writing about the storms, and then the company I work for sent me an e-mail asking me to call a number if I wanted to review the Blake Shelton benefit concert.
It was USA Today.
I was thrilled. My byline would be seen nationwide.
They e-mailed me again and asked if I would review Toby Keith's Twister Relief Concert in the football stadium at the University of Oklahoma.
I couldn't say yes fast enough.
Besides Toby, performers included Carrie Underwood, Willie Nelson, Ronnie Dunn, Mel Tillis, John Anderson, Wade Hayes, Kellie Coffey, the only rocker Sammy Hagar and my old friend, Garth Brooks with his wife, whom he calls Miss Yearwood.
For the show, all reporters were kept in the room the Oklahoma Sooners football team have their meetings. The artists were brought in to talk to us and we watched the show on big screen TVs with a direct sound feed from the stage.
Garth was at the show long enough to play. He had to return to Las Vegas to play a sold-out show that night.
I'll admit I've changed a lot in the last five years but when I looked Garth in the eye and asked a question, he answered it without recognizing me. I was a little hurt, but not surprised.
As his time with the press wound down, I walked up to Garth's publicist and asked her if I could say "Hi" to him. She smiled, and said yes.
As he walked by, she said his name and then, "Sandi would like to say hi."
He looked at me and the second the recognized me he grabbed me in the biggest bear hug and kissed my cheek. He couldn't believe I was there.
"I wondered how you were."
About this time his wife hugged me too, kissed my other cheek and said she was glad to see me too.
All of this happened in front of the entire press corps. If they didn't know who I was before then, they knew I was something special after that.
I knew I was something special after that.
I worked 14 hours that day, had one-on-one interviews with Ronnie Dunn and Sammy Hagar, which I'll write about later, but it did more for my self worth than anything has for years.
A long review ran on USA today's site on Sunday and a shorter version ran in Monday's Life section.
If you'd like to donate to , please go to www.unitedwayokc.org
I tell stories for a living, and here are a few really good ones
I love interviewing people.
I enjoy asking them about things they've done and why they did them or how they did them and hear their stories.
Everyone has a few great stories, and I've got a few myself.
I told my reunion story with Garth Brooks at Toby Keith's Twister Benefit and I mentioned two other music stars I talked to that day.
Both Ronnie Dunn (formerly half of Brooks & Dunn and the one who sings on "My Maria") and Sammy Hagar (the Red Rocker himself, who also did time in Van Halen in the "Van Hagar" days) and I go way back and I love them both the way you love your mischievous friends.
Ronnie Dunn spent a lot of his life in Tulsa and we both were brought up strict Southern Baptists. We both discovered we had to make a choice between what we wanted to do and what the church wanted us to do and we both chose to leave our respective churches.
But that's where Ronnie learned to sing.
Actually, that's where most of the famous music stars from Oklahoma learn to sing -- in church. If it's in any water at all, it must be Holy Water.
I sat in a tiny room with Ronnie and as we talked (me writing furiously, him playing with my recorder) we both watched Garth thrill the sold-out show of 61,000 with his amazing stage presence and those songs.
Neither Ronnie nor I wanted to miss Garth playing a rare Oklahoma show and his very first in Norman.
Ronnie told me he sent two songs he wrote to Sammy Hagar for Sammy's upcoming duets album, and they did one, "Bad to Ford and Chevrolets." Ronnie has his own record label now, named after the statue of Willie Nelson he received in Texas for his songwriting talents. (Little Will-E/Warner Bros.). His new album "Kiss You There."
He's such a laid back guy that his humor can surprise you and you find yourself laughing as he slyly slides a joke into an answer.
Sammy Hagar now, is all rocker. I've had dinner with him and the members of Van Halen when they were on tour (I have the pictures somewhere but there's the problem of my mistake husband being in them that causes me to want to hurl when I seen them).
Before I left the paper, I had a one-on-one interview with Sammy in his dressing room before a sold-out show at an outdoor venue. I walked in to happy chaos. His wife was in there with their baby in a stroller. As Sammy and I sat down, she poured me some of Sammy new (then) Cabo Wabo Tequila in a WINE GLASS and Sammy cheerfully told me to just sip it. I asked where the lemon and salt was and he was shocked. I learned all about good tequila and that it can be sipped just like wine.
It could. It was wonderful.
So I did my interview with a drink in my hand (that's news to the paper, believe me) and we parted by me giving him one of my husband's custom guitar picks, and he pulled one out of his guitar to give back.
This time, I walked into another scene of organized chaos, but this time Sammy and his band were singing in full voice. I stood and listened, not recognizing the song but did know his wife and his much bigger daughter, who was in the floor coloring.
Sammy saw me and the singing stopped.
"I'm debuting a song today and we've never played it live," he explained. "I'm terrified."
The song was Ronnie Dunn's "Bad on Fords and Chevrolets" which Sammy said he de-countrified before they recorded the duet.
I assured him it sounded great and we sat on a sofa. I reminded him of the last time we met and the glass of tequila, and he laughed and said those days were over.
"I'm getting gout. Can you believe it? Gout? That's a form of arthritis you know."
Oh I do know. Before he starting talking about uric acid levels and dietary restrictions, I calmly told him I understood.
"I have RA, lupus, fibromyalgia and my spine looks like a toddler built it," I wisecracked, but it worked.
We talked about his new album "Sammy Hagar and Friends" due out Sept. 13. He duets "Margaritaville" with Toby Keith, whom he befriended on Toby's frequent trips to Cabo San Lucas and playing at Sammy club there.
It explained why Sammy was there.
We finished our interview with hugs and kisses (I got kissed on the hand when I arrived and on the cheek when I left).
The new tune is good. It's got a great hook and is a lot of fun, a lot like Sammy.
Much later in the evening, long after Toby had left the stage and the last firework explosion echo was long gone, I was wrapping up writing my story when a man walked in with a bunch of paper cups.
They were samples of Toby Keith's brand of Mescal, "Wild Shot."
Thinking, echoes of old days with Sammy, I snagged a glass. It was like the most tart lemonade you'll ever have but it was good, and a perfect way to end a memorable day.
And, it gave me some great stories to tell.
I enjoy asking them about things they've done and why they did them or how they did them and hear their stories.
Everyone has a few great stories, and I've got a few myself.
I told my reunion story with Garth Brooks at Toby Keith's Twister Benefit and I mentioned two other music stars I talked to that day.
Both Ronnie Dunn (formerly half of Brooks & Dunn and the one who sings on "My Maria") and Sammy Hagar (the Red Rocker himself, who also did time in Van Halen in the "Van Hagar" days) and I go way back and I love them both the way you love your mischievous friends.
Ronnie Dunn spent a lot of his life in Tulsa and we both were brought up strict Southern Baptists. We both discovered we had to make a choice between what we wanted to do and what the church wanted us to do and we both chose to leave our respective churches.
But that's where Ronnie learned to sing.
Actually, that's where most of the famous music stars from Oklahoma learn to sing -- in church. If it's in any water at all, it must be Holy Water.
I sat in a tiny room with Ronnie and as we talked (me writing furiously, him playing with my recorder) we both watched Garth thrill the sold-out show of 61,000 with his amazing stage presence and those songs.
Neither Ronnie nor I wanted to miss Garth playing a rare Oklahoma show and his very first in Norman.
Ronnie told me he sent two songs he wrote to Sammy Hagar for Sammy's upcoming duets album, and they did one, "Bad to Ford and Chevrolets." Ronnie has his own record label now, named after the statue of Willie Nelson he received in Texas for his songwriting talents. (Little Will-E/Warner Bros.). His new album "Kiss You There."
He's such a laid back guy that his humor can surprise you and you find yourself laughing as he slyly slides a joke into an answer.
Sammy Hagar now, is all rocker. I've had dinner with him and the members of Van Halen when they were on tour (I have the pictures somewhere but there's the problem of my mistake husband being in them that causes me to want to hurl when I seen them).
Before I left the paper, I had a one-on-one interview with Sammy in his dressing room before a sold-out show at an outdoor venue. I walked in to happy chaos. His wife was in there with their baby in a stroller. As Sammy and I sat down, she poured me some of Sammy new (then) Cabo Wabo Tequila in a WINE GLASS and Sammy cheerfully told me to just sip it. I asked where the lemon and salt was and he was shocked. I learned all about good tequila and that it can be sipped just like wine.
It could. It was wonderful.
So I did my interview with a drink in my hand (that's news to the paper, believe me) and we parted by me giving him one of my husband's custom guitar picks, and he pulled one out of his guitar to give back.
This time, I walked into another scene of organized chaos, but this time Sammy and his band were singing in full voice. I stood and listened, not recognizing the song but did know his wife and his much bigger daughter, who was in the floor coloring.
Sammy saw me and the singing stopped.
"I'm debuting a song today and we've never played it live," he explained. "I'm terrified."
The song was Ronnie Dunn's "Bad on Fords and Chevrolets" which Sammy said he de-countrified before they recorded the duet.
I assured him it sounded great and we sat on a sofa. I reminded him of the last time we met and the glass of tequila, and he laughed and said those days were over.
"I'm getting gout. Can you believe it? Gout? That's a form of arthritis you know."
Oh I do know. Before he starting talking about uric acid levels and dietary restrictions, I calmly told him I understood.
"I have RA, lupus, fibromyalgia and my spine looks like a toddler built it," I wisecracked, but it worked.
We talked about his new album "Sammy Hagar and Friends" due out Sept. 13. He duets "Margaritaville" with Toby Keith, whom he befriended on Toby's frequent trips to Cabo San Lucas and playing at Sammy club there.
It explained why Sammy was there.
We finished our interview with hugs and kisses (I got kissed on the hand when I arrived and on the cheek when I left).
The new tune is good. It's got a great hook and is a lot of fun, a lot like Sammy.
Much later in the evening, long after Toby had left the stage and the last firework explosion echo was long gone, I was wrapping up writing my story when a man walked in with a bunch of paper cups.
They were samples of Toby Keith's brand of Mescal, "Wild Shot."
Thinking, echoes of old days with Sammy, I snagged a glass. It was like the most tart lemonade you'll ever have but it was good, and a perfect way to end a memorable day.
And, it gave me some great stories to tell.
Tuesday, June 11, 2013
Stress triggers long-fogotten problems
Sandi's years as a newspaper reporter return to haunt her
Doctors have told me most of my life to keep my stress level low.
I have sincerely tried. I've taken classes, I know all the tricks to calm myself.
Sometimes our best efforts are not enough.
Anyone who chooses to be a news reporter of any kind must realize early that when disasters happen, regular assignments go out the window, or in some cases, gone with the wind.
I was fortunate for years. I wrote about movies, music, movie stars. The funerals I covered and obituaries I wrote were for celebrities. I traveled a lot and wrote about the fun things I did.
Those times were forcibly removed at 9:02 a.m. April 19, 1995 when the Alfred P. Murrah Federal Building was destroyed in a terrorist bombing. The blast from that truck of explosives left a huge disaster area and people lost their lives in other buildings besides the federal one. Still, everyone's heart stopped when we realized the day care center in the federal building was hit and children were among the dead and wounded.
You may recall the photograph of a fireman carrying the body of a little girl. I saw that photo the day it was taken.
I made it all the way home before I broke down in tears, repeating "She had on yellow socks."
Because I write fast and describe scenes well, I talked to victims and first responders. I wrote about the secondary disasters -- the cancellation of major events, the implosion of companies who lost their revenue streams.
Everyone worked 12 to 18 hours a day. We ate catered food at our desks, we wrote feature stories about each casualty, putting a face on each person who died. We all cried as we wrote story after story.
My friends had a 10 month old grandson in the day care center. He was identified by DNA with two other babies. I wrote his feature story and it is still the hardest story I ever wrote.
The bombing was the birth of "The Oklahoma Standard." When one of us is hurt, all of us hurt and we will help anyone who needs it until they don't any more.
I saw a therapist after the bombing. All the reporters did. She taught me so much and helped me cope with stress of all kinds.
We will skip the 1999 tornado for now because I was so sick by then I don't remember much about covering it.
I am well enough now that when the tornadoes that ripped through the Oklahoma City metro area Sunday and Monday I was asked to work for the paper, and thinking I could handle it, I said yes.
I didn't take the first hint I was going to have problems. When I heard children had died, I started crying.
I was covering volunteer efforts from several angles. So many people came to the disaster areas with supplies and to volunteer they had to be turned away. Supply depots were created and there are lists for people to sign to volunteer in the next few weeks and months. I interviewed a man who has volunteered for one charity for 30 years and works with assembly lines to build and fill boxes.
I wrote two stories Friday and turned them in. I thought I was doing great until I went to dinner with a friend Saturday night.
I could not remember a single story I had written that week. I drew a complete blank. It was like I had never done them. I started stressing out, my energy level tanked and I rushed home to look them up on my computer. One story had run, one ran Sunday and two more were waiting to go.
I spent the next day in my pajamas, in bed, watching anything but news. I secretly hope the paper won't call with more projects for a few days, but if they do, I'll say "Yes," because the Oklahoma Standard lives in me too.
I would like to thank every single person who works at Creaky Joints for letting me write about this now, and all of you who clicked "Like" when you found out I was safe. You cannot imagine what that did for me. I owe all of you a hug.
Doctors have told me most of my life to keep my stress level low.
I have sincerely tried. I've taken classes, I know all the tricks to calm myself.
Sometimes our best efforts are not enough.
Anyone who chooses to be a news reporter of any kind must realize early that when disasters happen, regular assignments go out the window, or in some cases, gone with the wind.
I was fortunate for years. I wrote about movies, music, movie stars. The funerals I covered and obituaries I wrote were for celebrities. I traveled a lot and wrote about the fun things I did.
Those times were forcibly removed at 9:02 a.m. April 19, 1995 when the Alfred P. Murrah Federal Building was destroyed in a terrorist bombing. The blast from that truck of explosives left a huge disaster area and people lost their lives in other buildings besides the federal one. Still, everyone's heart stopped when we realized the day care center in the federal building was hit and children were among the dead and wounded.
You may recall the photograph of a fireman carrying the body of a little girl. I saw that photo the day it was taken.
I made it all the way home before I broke down in tears, repeating "She had on yellow socks."
Because I write fast and describe scenes well, I talked to victims and first responders. I wrote about the secondary disasters -- the cancellation of major events, the implosion of companies who lost their revenue streams.
Everyone worked 12 to 18 hours a day. We ate catered food at our desks, we wrote feature stories about each casualty, putting a face on each person who died. We all cried as we wrote story after story.
My friends had a 10 month old grandson in the day care center. He was identified by DNA with two other babies. I wrote his feature story and it is still the hardest story I ever wrote.
The bombing was the birth of "The Oklahoma Standard." When one of us is hurt, all of us hurt and we will help anyone who needs it until they don't any more.
I saw a therapist after the bombing. All the reporters did. She taught me so much and helped me cope with stress of all kinds.
We will skip the 1999 tornado for now because I was so sick by then I don't remember much about covering it.
I am well enough now that when the tornadoes that ripped through the Oklahoma City metro area Sunday and Monday I was asked to work for the paper, and thinking I could handle it, I said yes.
I didn't take the first hint I was going to have problems. When I heard children had died, I started crying.
I was covering volunteer efforts from several angles. So many people came to the disaster areas with supplies and to volunteer they had to be turned away. Supply depots were created and there are lists for people to sign to volunteer in the next few weeks and months. I interviewed a man who has volunteered for one charity for 30 years and works with assembly lines to build and fill boxes.
I wrote two stories Friday and turned them in. I thought I was doing great until I went to dinner with a friend Saturday night.
I could not remember a single story I had written that week. I drew a complete blank. It was like I had never done them. I started stressing out, my energy level tanked and I rushed home to look them up on my computer. One story had run, one ran Sunday and two more were waiting to go.
I spent the next day in my pajamas, in bed, watching anything but news. I secretly hope the paper won't call with more projects for a few days, but if they do, I'll say "Yes," because the Oklahoma Standard lives in me too.
I would like to thank every single person who works at Creaky Joints for letting me write about this now, and all of you who clicked "Like" when you found out I was safe. You cannot imagine what that did for me. I owe all of you a hug.
Tuesday, May 21, 2013
Wednesday, May 8, 2013
The Boxer
Sandi's Going Down Swinging
Dealing with any autoimmune disorder is a war.
There are skirmishes, offensives, victories and defeats.
The key is to keep fighting.
I've always told anyone who felt sorry for me because I have RA and all the other problems that I am fighting this as hard as I can and I'll be going down swinging.
It's just sometimes it's so hard to make that fist.
I heard "The Boxer," by Simon and Garfunkle a few days ago and it brought me to tears. Maybe it was I've been feeling really ratty lately but most likely it was the news I got at my last doctor's visit, but the story of the man who is beaten over and over got to me.
I was crying and it took me several days to pinpoint why that song would set me off.
My appointment was one of the fast ones I have. I'm there long enough to get the prescriptions for concoction of pain meds I take to control that particular monster.
When my doctor's assistant came in, I asked her to tell me why I wasn't on any medicines that dealt specifically with the battle in my bones.
I knew I can't have NSAIDS any more because my kidney levels have been off for years, but the next bit of information was a sucker punch.
The PA looked through my charts and told me I couldn't have any more drugs that would suppress my immune system. Its suppressing itself enough on its own. Anything else would be dangerous.
So, I find myself out of drugs to take.
Since 1974 I have been taking one thing or another to fight the disease but I guess my battle is over until the next new drugs hit the market.
What this means is for the first time in decades, I'm in the ring alone, fighting hand to hand against my disease, and I'm afraid.
It's why I started to cry when I heard:
"In the clearing stands a boxer
And a fighter by his trade
And he caries the reminders
Of ev'ry glove that laid him out
Or cut him till he cried out
In his anger and his shame
'I am leaving, I am leaving'
But the fighter still remains."
And I remain, and I will go down swinging.
Dealing with any autoimmune disorder is a war.
There are skirmishes, offensives, victories and defeats.
The key is to keep fighting.
I've always told anyone who felt sorry for me because I have RA and all the other problems that I am fighting this as hard as I can and I'll be going down swinging.
It's just sometimes it's so hard to make that fist.
I heard "The Boxer," by Simon and Garfunkle a few days ago and it brought me to tears. Maybe it was I've been feeling really ratty lately but most likely it was the news I got at my last doctor's visit, but the story of the man who is beaten over and over got to me.
I was crying and it took me several days to pinpoint why that song would set me off.
My appointment was one of the fast ones I have. I'm there long enough to get the prescriptions for concoction of pain meds I take to control that particular monster.
When my doctor's assistant came in, I asked her to tell me why I wasn't on any medicines that dealt specifically with the battle in my bones.
I knew I can't have NSAIDS any more because my kidney levels have been off for years, but the next bit of information was a sucker punch.
The PA looked through my charts and told me I couldn't have any more drugs that would suppress my immune system. Its suppressing itself enough on its own. Anything else would be dangerous.
So, I find myself out of drugs to take.
Since 1974 I have been taking one thing or another to fight the disease but I guess my battle is over until the next new drugs hit the market.
What this means is for the first time in decades, I'm in the ring alone, fighting hand to hand against my disease, and I'm afraid.
It's why I started to cry when I heard:
"In the clearing stands a boxer
And a fighter by his trade
And he caries the reminders
Of ev'ry glove that laid him out
Or cut him till he cried out
In his anger and his shame
'I am leaving, I am leaving'
But the fighter still remains."
And I remain, and I will go down swinging.
On the Road Again
Sandi tries to make her road a smooth one
BEFORE:
I'm traveling this week.
For the first time since 2006 I'm boarding a plane and leaving.
I am going on a four-day travel junket with other travel writers to spend a few days in the Blue Ridge Mountains.
I am both excited to leave town and terrified I'm not strong enough to make this trip.
I'll be writing several stories for the travel section of my newspaper and I've got two weeks after I return to get them done.
I thought it might be interesting to write what I hope happens before I leave and finish this blog with how it actually went.
So -- I have my airline tickets and know where my seats are. I change planes in Atlanta. Tomorrow I should know which gates I'll need and that will decide if I need to hitch a ride on a cart or stroll through the airport.
I've decided not to check a bag but travel light. This is a no brainer because 20 years of packing made me a pro. Still, I read all the new rules the TSA provided and have a good idea what's going and what's staying.
I am going to do the U.S. Post Office's "If It Fits, It Ships" to send home all the stuff I get (press kits, souvenirs, stuff like that) to keep my load light.
I am starting a steroid dose pack before I leave so I will feel the best I can while I'm gone.
I have tried to pick activities on the trip that won't tax me too much, but I do realize I will be on my feet a lot more than I have been. (Reason One for dose pack).
I picked a short trip. I have two days of activities and then I'm out.
I'm taking a cane. I don't want to but don't want to take any chances.
AFTER
A week ago I was in Virginia and a friend took me to a discount store to buy a suitcase for all the things I bought or was given.
Yes, I'm back.
On the whole, the trip was a big success. Traveling was easy. My gates at the Atlanta airport were close enough that I could easily walk between them.
I think the dose pack was the key. It kept me flexible enough I was able to walk up and down stairs, tour museums and wineries with little trouble and keep up with everyone else.
I made it home by noon Sunday and took it easy. I could tell when the steroids wore off because the pain increased, I discovered some muscle strain in my shoulder and I was really tired.
I bought the suitcase because we were given many things that I didn't want to leave in a box for the post office. I wound up packing all the souvenirs and gifts in a new hard-sided suitcases and wrapped all the fragile things in my clothes.
I carried on the suitcase full of interviews, notes, press kits and brochures. I could replace everything but those.
I was really lucky that I flew the day before the FAA furloughed their employees and there were slowdowns in the air.
It's good to know I can keep up with healthy people. One of the writers ran a half marathon while she was there. Other writers took bicycle tours though neighborhoods, hiked and stayed out late at a music festival while I found myself at mountaintop wineries, marveling at the beautiful pastoral scenes and the mountains showing their spring colors, and hitting my hotel room right after dinner.
Still, I believe I can do more of these, which makes me happy. I love to travel and now I know I can do it within reason and good planning.
The agency who books these tours has invited me to come on other trips with them.
I believe I will.
BEFORE:
I'm traveling this week.
For the first time since 2006 I'm boarding a plane and leaving.
I am going on a four-day travel junket with other travel writers to spend a few days in the Blue Ridge Mountains.
I am both excited to leave town and terrified I'm not strong enough to make this trip.
I'll be writing several stories for the travel section of my newspaper and I've got two weeks after I return to get them done.
I thought it might be interesting to write what I hope happens before I leave and finish this blog with how it actually went.
So -- I have my airline tickets and know where my seats are. I change planes in Atlanta. Tomorrow I should know which gates I'll need and that will decide if I need to hitch a ride on a cart or stroll through the airport.
I've decided not to check a bag but travel light. This is a no brainer because 20 years of packing made me a pro. Still, I read all the new rules the TSA provided and have a good idea what's going and what's staying.
I am going to do the U.S. Post Office's "If It Fits, It Ships" to send home all the stuff I get (press kits, souvenirs, stuff like that) to keep my load light.
I am starting a steroid dose pack before I leave so I will feel the best I can while I'm gone.
I have tried to pick activities on the trip that won't tax me too much, but I do realize I will be on my feet a lot more than I have been. (Reason One for dose pack).
I picked a short trip. I have two days of activities and then I'm out.
I'm taking a cane. I don't want to but don't want to take any chances.
AFTER
A week ago I was in Virginia and a friend took me to a discount store to buy a suitcase for all the things I bought or was given.
Yes, I'm back.
On the whole, the trip was a big success. Traveling was easy. My gates at the Atlanta airport were close enough that I could easily walk between them.
I think the dose pack was the key. It kept me flexible enough I was able to walk up and down stairs, tour museums and wineries with little trouble and keep up with everyone else.
I made it home by noon Sunday and took it easy. I could tell when the steroids wore off because the pain increased, I discovered some muscle strain in my shoulder and I was really tired.
I bought the suitcase because we were given many things that I didn't want to leave in a box for the post office. I wound up packing all the souvenirs and gifts in a new hard-sided suitcases and wrapped all the fragile things in my clothes.
I carried on the suitcase full of interviews, notes, press kits and brochures. I could replace everything but those.
I was really lucky that I flew the day before the FAA furloughed their employees and there were slowdowns in the air.
It's good to know I can keep up with healthy people. One of the writers ran a half marathon while she was there. Other writers took bicycle tours though neighborhoods, hiked and stayed out late at a music festival while I found myself at mountaintop wineries, marveling at the beautiful pastoral scenes and the mountains showing their spring colors, and hitting my hotel room right after dinner.
Still, I believe I can do more of these, which makes me happy. I love to travel and now I know I can do it within reason and good planning.
The agency who books these tours has invited me to come on other trips with them.
I believe I will.
Monday, April 15, 2013
Tunes tame the worst pain
Tag: When "I Can Hear Music," it wields a "Strange Magic" over this "Rock and Roll Girl"
No matter how sick I am, one thing makes me feel better.
Music.
One of my first clear memories is waking up from a nap and hearing a radio playing "Wake Up Little Susie" by the Everly Brothers.
I remember getting my first record player when I was five and the records that came with it.
I started playing the flute when I started junior high school and moved to piccolo shortly after. I could play all the required school music as well as every flute part from every rock song of the era, and the theme song from "Laurel and Hardy."
I started taping my own cassettes of tunes from FM radio in the late 1960s and kept it up until CDs took over. I probably have 100 tapes custom made by me.
I've never not listened to music and it paid off big time. I've had two jobs where knowledge of the music business was essential.
I worked as an event coordinator at a convention center and worked every concert they had. I knew so much about the bands that other managers started asking my advice on whether to book a band into their arena. Once, I was only one person off of an attendance estimate I made. It was bliss.
The second was becoming a music critic for a daily newspaper. I got paid to listen to all kinds of music and write about it. I talked to performers, promoters, publicists.
For a brief time, I had a writing assignment from Rolling Stone Magazine to write about the Oklahoma City area music scene. The federal building bombing stopped that story and they never called me again.
Computers changed the way we all listen to tunes. The only thing I cared about when I updated my phone was how music sounded on it.
One website, blip.fm, allows anyone to be their own DJ and play songs for everyone else on the site at that time. It's so much fun to do and something I can do regardless of how sick I am, how much the pain is nagging or when sleepless nights attack.
No matter how bad I feel, I can always manage to lie down with a set of headphones and my massive music library on my computer set on shuffle and let the hours go by.
My daily newspaper pays me to write for them again on a freelance basis and a few weeks ago I got to relive my glory days by reviewing an Eric Clapton concert with the Wallflowers as an opening act.
There's nothing better than sitting in free seats, taking notes about the music and the audience reactions and crafting that into a review that others will read the next day. I try to bring the concert to them, and I love doing it.
I spent the next two days after that show pretty much in my pajamas and sleeping off and on, but it was so worth it.
My love of music has passed to my youngest nephew, who is a music composition major at a big university. Though most students his age would prefer a gift card for music downloads, we buy him classic rock we think he'd like. For instance, he got "Bridge Over Troubled Water," by Simon and Garfunkle, "The Whole Story" by Kate Bush and "Classic Yes" by Yes for his birthday, a Todd Rundgren compilation for Christmas.
It's wonderful to share music that has gotten me through all kinds of times. He introduces me to music he likes, and best of all I get to hear the music he is creating.
Best of all though, my husband is a musician. Occasionally I get a private concert of tunes he's written over the years, including a few written just for me.
There's no medicine better than that.
No matter how sick I am, one thing makes me feel better.
Music.
One of my first clear memories is waking up from a nap and hearing a radio playing "Wake Up Little Susie" by the Everly Brothers.
I remember getting my first record player when I was five and the records that came with it.
I started playing the flute when I started junior high school and moved to piccolo shortly after. I could play all the required school music as well as every flute part from every rock song of the era, and the theme song from "Laurel and Hardy."
I started taping my own cassettes of tunes from FM radio in the late 1960s and kept it up until CDs took over. I probably have 100 tapes custom made by me.
I've never not listened to music and it paid off big time. I've had two jobs where knowledge of the music business was essential.
I worked as an event coordinator at a convention center and worked every concert they had. I knew so much about the bands that other managers started asking my advice on whether to book a band into their arena. Once, I was only one person off of an attendance estimate I made. It was bliss.
The second was becoming a music critic for a daily newspaper. I got paid to listen to all kinds of music and write about it. I talked to performers, promoters, publicists.
For a brief time, I had a writing assignment from Rolling Stone Magazine to write about the Oklahoma City area music scene. The federal building bombing stopped that story and they never called me again.
Computers changed the way we all listen to tunes. The only thing I cared about when I updated my phone was how music sounded on it.
One website, blip.fm, allows anyone to be their own DJ and play songs for everyone else on the site at that time. It's so much fun to do and something I can do regardless of how sick I am, how much the pain is nagging or when sleepless nights attack.
No matter how bad I feel, I can always manage to lie down with a set of headphones and my massive music library on my computer set on shuffle and let the hours go by.
My daily newspaper pays me to write for them again on a freelance basis and a few weeks ago I got to relive my glory days by reviewing an Eric Clapton concert with the Wallflowers as an opening act.
There's nothing better than sitting in free seats, taking notes about the music and the audience reactions and crafting that into a review that others will read the next day. I try to bring the concert to them, and I love doing it.
I spent the next two days after that show pretty much in my pajamas and sleeping off and on, but it was so worth it.
My love of music has passed to my youngest nephew, who is a music composition major at a big university. Though most students his age would prefer a gift card for music downloads, we buy him classic rock we think he'd like. For instance, he got "Bridge Over Troubled Water," by Simon and Garfunkle, "The Whole Story" by Kate Bush and "Classic Yes" by Yes for his birthday, a Todd Rundgren compilation for Christmas.
It's wonderful to share music that has gotten me through all kinds of times. He introduces me to music he likes, and best of all I get to hear the music he is creating.
Best of all though, my husband is a musician. Occasionally I get a private concert of tunes he's written over the years, including a few written just for me.
There's no medicine better than that.
Sunday, March 24, 2013
Sandi looks forward/done
Tag line: Looking forward is a lifesaver
The darkest part of living with arthritis is depression.
When you feel so lousy that you can't reach for the pills designed to help you feel better, you know depression has set in.
The thoughts that you try so hard to stuff into a tiny corner of your brain burst out like fake snakes from a can of peanuts.
"I'm sick and tired of being sick and tired."
"What if I never feel better?"
"All my friends are so tired of hearing me complain."
"I don't know why I even care."
It's about this time my strength of will kicks in. I force myself to sit up in bed, get my pills, take whatever meds that are due, and plan something.
I have discovered looking forward to something, anything, can keep those dangerous thoughts at bay, and yes, even make you feel better.
Your event doesn't have to be some dream trip or shopping spree. It can be as simple as knowing "Downton Abbey" is coming on PBS in a few days, or a radio station doing a program of music you like.
It just has to be something that keeps your interested in sticking around.
Me? Right now I'm looking forward to seeing Jimmy Buffett in concert May 4 in Dallas. We have our tickets and a hotel room for the night.
I'm watching travel sites for a deal on a rental car and trying to discover a Parrothead group here that is having a tailgate party in the parking lot.
I've seen Mrs. Buffett's Baby Boy twice, but my husband hasn't, so I'm also excited to watch him see all the weirdness a Buffett concert brings with it.
Yes, that's a pretty big one, but sometimes it's knowing that a magazine I like is due in the mail, or a free movie screening is in two days, or I have a new book to read, that's enough.
I've gotten pedicures, made lunch dates with old friends, gone through a box of stuff left over from our last move.
Keeping your brain occupied does wonders for lightening your mood, and we all need coping mechanisms of any kind come in handy.
Sometimes every trick I have fails. Then I know it's time to call my doctor and tell her I'm depressed. If it's really bad, when I start thinking how nice it would be not to deal with any of this anymore, I call my therapist.
Yes, I have a therapist. I've had one since the Oklahoma City bombing in 1995 and she has saved my life. There are times and situations when only a professional can show you the light in all the darkness, and there is nothing wrong with having a tune up from time to time.
Right now, this blog is working as one of mine. I mean, May 4 is still a while away.
The trick with this is making sure you're in the best health you can be to enjoy your treat.
It's a fine line, but one that's essential to follow to feel as happy as possible with this complicated disease.
The darkest part of living with arthritis is depression.
When you feel so lousy that you can't reach for the pills designed to help you feel better, you know depression has set in.
The thoughts that you try so hard to stuff into a tiny corner of your brain burst out like fake snakes from a can of peanuts.
"I'm sick and tired of being sick and tired."
"What if I never feel better?"
"All my friends are so tired of hearing me complain."
"I don't know why I even care."
It's about this time my strength of will kicks in. I force myself to sit up in bed, get my pills, take whatever meds that are due, and plan something.
I have discovered looking forward to something, anything, can keep those dangerous thoughts at bay, and yes, even make you feel better.
Your event doesn't have to be some dream trip or shopping spree. It can be as simple as knowing "Downton Abbey" is coming on PBS in a few days, or a radio station doing a program of music you like.
It just has to be something that keeps your interested in sticking around.
Me? Right now I'm looking forward to seeing Jimmy Buffett in concert May 4 in Dallas. We have our tickets and a hotel room for the night.
I'm watching travel sites for a deal on a rental car and trying to discover a Parrothead group here that is having a tailgate party in the parking lot.
I've seen Mrs. Buffett's Baby Boy twice, but my husband hasn't, so I'm also excited to watch him see all the weirdness a Buffett concert brings with it.
Yes, that's a pretty big one, but sometimes it's knowing that a magazine I like is due in the mail, or a free movie screening is in two days, or I have a new book to read, that's enough.
I've gotten pedicures, made lunch dates with old friends, gone through a box of stuff left over from our last move.
Keeping your brain occupied does wonders for lightening your mood, and we all need coping mechanisms of any kind come in handy.
Sometimes every trick I have fails. Then I know it's time to call my doctor and tell her I'm depressed. If it's really bad, when I start thinking how nice it would be not to deal with any of this anymore, I call my therapist.
Yes, I have a therapist. I've had one since the Oklahoma City bombing in 1995 and she has saved my life. There are times and situations when only a professional can show you the light in all the darkness, and there is nothing wrong with having a tune up from time to time.
Right now, this blog is working as one of mine. I mean, May 4 is still a while away.
The trick with this is making sure you're in the best health you can be to enjoy your treat.
It's a fine line, but one that's essential to follow to feel as happy as possible with this complicated disease.
Six degrees of Sandi Davis/done
Sandi's adventures provide great stories
A couple is watching TV and the woman is talking telling her husband some kind of trivia about the actor. The man is thinking, "I want my own TV."
I have had run-ins with celebrities my whole life, but when I worked as an entertainment writer I met so many celebrities that if IMDB didn't exist, I'd be lost.
For 15 years, about every other weekend I was somewhere watching a movie or three set to come out in the next month or so and interviewing the cast and crew. That way, my newspaper would have a story about the stars and a review from their own critic on opening day.
It's a good system.
I did the junket for "The Princess Diaries 2: Royal Engagement" in 2004. I was excited to get to interview Julie Andrews and Anne Hathaway (who won an Oscar Feb. 24), so much so I forgot all about some guy named Chris Pine.
I saw 2009's "Star Trek" in 2009 with no recognition. It stayed that way until I saw "Princess Diaries 2" on TV. My jaw dropped. I had interviewed the new James T. Kirk five years before.
One day in 1995, I met NBC's weatherman Willard Scott, my governor, one of my senators, a state congressman who played football at my alma mater and Jesse Jackson Sr. Yes, all of them in one day.
By the way, if you ask Willard Scott if he's a meteorologist, he answers, "No, I'm a Baptist."
At the junket for the movie "Evita," I had a one-on-one interview with Antonio Banderas about his role in the movie. I heard his publicist telling him who he was speaking with next, and I walked into the room.
He sang "Oklahoma!" to me, full voice. The whole song.
I stood there, trying not to drool, and listened.
He kept motioning me to sit down, and I kept shaking my head, "No."
When he finished the song, I told him that was our state's song and I had to stand. He told me he knew every word to every song in the musical. We had a nice chat, and he gave me an autograph.
Yes, that's nice, but Antonio Banderas sang "Oklahoma!" for me.
And yes, I interviewed Madonna too.
Remember the movie "Twister"? It was partially filmed in Oklahoma and I went on the set visit and saw an old friend, actor Bill Paxton.
He's from Fort Worth and is one of the nicest guys. During the junket, he and I joked about the tornado drills we endured in elementary school, to the disbelief of the writers not from Tornado Alley.
I was dressed in jeans and a shirt that day.
A week or so later Paxton and company were in Oklahoma City for the world premiere of "Twister" and we ran into each other again. This time I was in a full-length gown, hair done, wearing makeup. We wound up at the after party doing vodka shots from the ice sculpture. There are photos, somewhere.
A week later I was back on Los Angeles doing the junket for the secret-agent spoof, "Spy Hard." I had just finished a one-on-one with Leslie Nielsen and had some free time so I decided to visit the hotel's hot tub. I was wearing a my bathing suit, a hotel robe and flip-flops, my hair pulled on on top of my head. I was waiting at the elevator.
The doors opened and Bill Paxton stood there with his publicist. We locked eyes and started laughing.
"Are you stalking me?," I asked.
"Yes," he said.
The other people on the elevator couldn't understand why we stood there hugging and laughing.
You can't make this stuff up.
The point is this. My carry-on luggage literally rattled from all the medicine I had to take with me. I was using a cane. My memory was (and still is) like Swiss cheese, but I had fun.
And now that's all that's behind me, I can recall these things that happened to me, and annoy my husband with them while he's watching TV.
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