A Spoon By Any Other Name

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.

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..

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.

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.

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.

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.

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.