Sunday, May 31, 2009

RA Warrior's Site Reactions, part 2

Thank you for the many inspiring comments and emails. These last two weeks have been like a whirlwind. One day, I decided I just couldn’t wait any longer. I still do not have all my ducks in a row, but here we are anyway.

I have been working on my cool new RA website for a few months, whenever I get time. And I am closer than ever to getting that online and this blog will be a big part of it. Thanks to you who are getting on board from the very beginning.

There have been a few questions about how to best participate here on the blog. You can do as you like:

Click on “comment” below a story. Write inside the comment box. Write as much as you like. Click “post comment.” I will reply as soon as I am able to do so.

Blogs use “followers” to add credibility. It helps other readers know that people find this blog useful. You can either follow publicly or privately – and with or without a picture of you or your dog. ;D Just click on “follow this blog” and you will be prompted.

This is just a way to make it easier for you to remember to read the blog every day. It’s like a newspaper subscription – only free. There are a few ways you can subscribe to Rheumatoid Arthritis Warrior:

If you click on the “Atom” link at the bottom of the page, you will open a window to subscribe via RSS (that’s Really Simple Syndication). Just click on “Subscribe to this feed.” Then, a little permission window from your own computer will ask you to confirm; press “Subscribe.” Now, if you check your RSS feeds through whatever gadget you use (or in your “Favorites – Feeds” tab, you’ll see Rheumatoid Arthritis Warrior there.

If you prefer, you can just “bookmark” this site with your “Add Favorites” tab and then use it every day. ;D

If you press the “share” button, you will see different ways that you can refer others to this blog. If you choose “email” you can email a link to Rheumatoid Arthritis Warrior to friends. And you can even add your message, if you like. The other things (such as Digg) are ways to vote for RA Warrior as a good blog or post a link to us on another site (like Facebook). That is just to help more people find this blog. I will continue to try to make it easier and I appreciate your suggestions.

If you need to contact me directly, you can email me at Soon, you will be able to enter your own email onto my site, so that you can receive updates periodically from Rheumatoid Arthritis Warrior.

Soon I will finally have the Profile page completed. Thank you for your patience.

Bee Sting
Finally, yes, I did my shots yesterday and the other kind of site reaction continues also. I appreciate your concern and prayers as I try to unsubscribe to my bee sting. ;D

Friday, May 29, 2009

How Rheumatoid Arthritis Creates Makeovers and Bag Ladies

This is a before and after story about some ladies with bags. But it’s not Extreme Makeover. It’s “Before RA and After RA.”

Before RA, I never accepted help from the baggers at the grocery store. I didn’t need help. (Maybe my mom read the Little Red Hen to me one too many times, but I tried to do everything by myself.)

Well, grocery shopping is one of those things that changes drastically when Rheumatoid Arthritis moves in. I used to also shop at Wal-Mart during odd hours when the stores were empty. Often, I’d go early or late while the kids slept. It was just easier on everybody else.

When I’d back the station wagon into the driveway with my loot, I’d scurry around to the back to pick up all the bags at once. I could set several bags on each arm, starting up near the shoulder. Then, I’d put the heaviest things in my hands. I shut the door with my hip. Within a minute, I was ringing the doorbell with my elbow saying, “Let Momma in.”

Usually, they didn’t have a chance to carry a single bag because I took care of them in a wink. It seemed to me like a waste of time to go back to the car several times. Why not just be uncomfortable for 2 minutes? There is never enough time, so why waste any?

I can hardly hold back the laughter as I picture myself acting out that scene hundreds of times. If I had only known the future - more of my energy as an able-bodied woman should have been spent playing tennis!

What a difference today is from all that! Since the Rheumatoid Arthritis, I do not usually risk going to the store alone. I almost always have helping hands to carry heavy stuff – and bring in the bags. When you think about it, this whole “before and after makeover” thing has affected much more than just me. I have to accept help – and someone has to offer it cheerfully. ; D

Sometimes, I do have to go it alone and it can make for pretty some rough moments. There was a lady just like me at the library recently. She was dragging her bag of loot – books - toward her car. Fortunately for her, my friend Leslie was nearby. She saw her and rushed up to help. She carried her load and struck up a conversation.

My friend called me that night so excited, “I met a woman with RA - at the library.” My friend was so blessed that she had the chance to do one thing to make life with RA a bit easier for that woman at that moment. I don’t know who was blessed more.

But both of them are so beautiful to me. No makeover necessary here. I am the one who taught my friend about RA. However, I know I do not take credit for her being a Good Samaritan.

You see, I met my friend at Sam’s club 10 years ago. I had injured my back trimming my trees and I could not lift the 50 lb. bag of dog food I was buying for Gabriel. She loaded the dog food into my cart. And ten minutes later, into my station wagon. Guess I did accept help before RA after all – at least sometimes.

I just saw this ridiculous new tool on sale on TV. It is a giant plastic ring that you can use to carry all of your grocery bags at once. I laughed out loud. I will be reviewing cool tools on my upcoming website, but you can suspect I won’t recommend that one!

“Look! You don’t have to carry all the bags at once. Let someone help you and then go play tennis together.” I didn’t say that – it was the makeover talking. ; D

Thursday, May 28, 2009

RA Warrior's Angel Puppy, Gabriel

My Angel Gabriel

One year ago today, we lost our dog Gabriel. Had he made it through last summer, he would have been 19 years old. I bought him on New Years’ day with Christmas money. I was 7 months pregnant with my firstborn. I always told Gabe he was my “first adopted”.

Gabriel was a Bichon Frise. Even though he was a purebred, I purchased him for only one hundred dollars. There were two reasons that he was such a “cheap” puppy.

First, he had little freckles on his nose and foot pads. These coloring “imperfections” made him too flawed to either show or breed. He fit in perfectly around here – we aren’t show offs either.

The second reason I got such a deal was that I traveled out into the country to find him. Gabe was born on a farm an hour outside of town. It was a funny scene when we found him. There were seven tiny white balls of fluff bouncing around like ping pong balls in this dull sitting room. It was a blur of fur. He was the one that I caught.

Over the years, I spent hundreds of hours grooming Gaber. I quickly discovered that professional grooming is very expensive for Bichons, so I learned how to do it myself. That is how I use to always handle everything – just tackle it by myself. I got a book from the library. And Gabriel and I figured it out.

He was gorgeous and tried to cooperate with me. His favorite part was running around after a haircut listening to us say how handsome he looked. He posed for lots of pictures. Even family portraits.

Gabe had a lot of unusual qualities. He loved visitors so much that he often threatened to go home with them. We had prayed he would always make visitors feel welcome. He certainly did.

One of Gabe’s funniest tricks was to bounce straight up like a basketball in front of the window in our front door. The window was four feet off the ground. It was so funny to see the reaction of people when they rang the doorbell. Within seconds, they were face to face with Gabe. Not what they expected. And then he was gone. And then he was back. Up and down…

Gradually, Gabe slowed down. Eventually, his bouncing days ended. But he found other ways to express his ebullient personality. He helped me raise four of my children. It was obvious that he saw himself as one of the parents, not one of the kids. Firstborns are like that – even when they are adopted.

During the last years we had Gabriel, he developed arthritis all over the place. We grew old together overnight. I became unable to care for him and he became unable to do the things that showed people how cheerful and funny he was. Neither of us gave up though.

When his hair got so long he could not see out, I would painstakingly groom him. He would patiently stand still. It might take hours. He was my angel. I used to sing to him the song by Sonny and Cher, I Got You Babe. But, of course it went like this: I Got You GABE.

I miss my Gabriel today. I think of him when I get in bed each night and my hips and shoulders pull out of place the same way that his did. I think of him whenever I hear the songs I sang to him every day. And I know better now than I did 20 years ago: he definitely was a first quality dog.

Wednesday, May 27, 2009

Emapathy for Rheumatoid Arthritis

Zero to 60 in 15 Seconds Flat

How can you describe how your Rheumatoid Arthritis makes you feel in 15 seconds flat? We lament the fact that there is a wide world out there that just “doesn’t get it.” My own world is the same as yours. My own family and friends and doctors have a hard time.

There is no Stepford Wives extreme makeover for understanding RA. The folks who don’t have Rheumatoid Arthritis do not understand what it is like to walk – that is limp – in our shoes. And they never will entirely.

As I discussed last week in Transparency and the Wall, there must be a balance between our willingness to be honest about our health and our accepting the fact that some people will choose to live in denial. We are neither able nor responsible to climb the rock wall of denial that some folks throw up in our faces. Besides, repelling is not an approved sport for RA-ers.

So, let’s assume you have a willing audience to hear your description. What can you say fast – before you lose ‘em?

There are three categories to describe your physical condition: Strength, Stamina, and Pain.


I like to describe strength as what it takes to lift a backpack. Someone with Rheumatoid Arthritis must carry an extra backpack which cannot be put down.

Try to describe what is in your backpack right now. Is it full of concrete blocks or just a load of laundry? Remember, even if it is only a magazine, that could get pretty heavy if you could never put it down.


When you have RA, it seems like the world is no longer a level playing field. It’s like all of life is climbing a mountain. You have to struggle and climb your way to accomplish any small thing. Some days can be grueling like the Alps and others may be only challenging like the Appalachian Trail. And, every morning, we begin again at the bottom of the mountain.

Try to say how steep you feel the mountain is. And where are you on it, right now?


Pain is the defining symptom of RA. If your audience has never experienced severe pain, this will not be easy. However, if he has ever had any severe pain, ask him to recall that pain and label it as “five”. (Some examples may include kidney stones, slipped disc, torn rotator cuff, being shot with a bullet, or natural childbirth).

Then, rate your own pain right now with a number between zero and five. It would be good at this point to also name the places that hurt the worst.

You may end up using all three word pictures. Or, maybe you only need one. I’ll bet, after this gets you going, you come up with even more on of your own.

Here is my example from today:

Aw. Thank you for asking. Today, my backpack has several library books in it. I’m climbing a small grassy knoll today because I decided to take the easy road. Have made it over halfway up the hill. However, going to Wal-Mart was more like plowing through an avalanche. I am hurting in about 15 joints and I rate it a 3.5.

It was so kind of you to inquire. ; -D

Tuesday, May 26, 2009

Fun Ways to Fight Rheumatoid Arthritis

Tickles, Trunks, and Nutrition

How do you make an elephant float?

Two scoops of ice cream, root beer, and an elephant.
Sorry, I know it’s corny. I’ve been telling that joke for almost 40 years and I still laugh. I’m incorrigible.

Well, if you’ve ever looked up Rheumatoid Arthritis on Google, you know there are lots of ridiculous recipes for a cure. There are foods to eat and foods to avoid. There are gloves and creams and sprays. Funny, fake, and preposterous cures abound – anything to get you to CLICK HERE NOW.

Once, we were visiting NASA on a “free entry for locals” day. A woman who saw me struggling to walk approached me with her cure: “I was like you just last month - until I drank acai juice.” She meant well, so I didn’t laugh in her face. But, I think my kids gave her a look.

A friend of mine did give me a large bottle of the juice. I was glad to give it a try. I’m not a cynic. I’m even willing to inject myself at home with chemo drugs and new-fangled manmade biologics – Hey, I’m willing to try anything within reason.

That brings us to my internist. He is a good doctor. And I know he cares because when he got a look at my numerous abnormal lab results, he had the vitamin talk with me. He gave me list of supplements he wants me to use. It’s not one more absurd attempt at a cure. He just knows that Rheumatoid Arthritis is out to destroy my entire body and he wants me to put every good weapon in my arsenal.

When I looked at the list of the supplements, I did the math. “That’s a lot of pills,” I thought. Then I started collecting the various bottles on the counter. “THAT’S IMPOSSIBLE,” I said. (It really is a huge number of pills because of the amount of each supplement that I need.)

You may know this one already: How do you eat an elephant?

One bite at a time, right?

So, I devised a plan for the vitamins and supplements. It has really helped. I got one of those large divided pill boxes people use for weekly pills. But, I don’t label it with the days of the week. I open the bottles and fill up the compartments. One is for fish oil, one is for calcium, one is for vitamin D, one for iron and so on. I can’t fit enough in there to get through a whole week, but you probably could.

Here is the rest of my method: I keep the box nearby and every time I eat a meal, I swallow some pills. If I eat a brownie at night with the kids, I swallow some pills. That takes care of about half of the pills for a day.

The other half of the pills, I take this way: chill some healthy juices that are considered a special treat. A couple of times a day, I pour out a big shot (six ounces or so) and swallow some pills. These have to be the ones that don’t cause much stomach upset, like Vitamin C or flax oil. Since the juice is a treat, the pills go down easier. Sometimes, I add healthy nuts or something like that. (As for juices, I recommend the V-8 fusion flavors or Welch’s purple.)

It’s not cheesecake, but it’s still a good thing.
How about one laugh for the road?
Why are elephants trumpeters?
Because it’s too hard to learn to play the piano.

Monday, May 25, 2009

Memorial Day Tribute from RA Warrior

Courage in the blood.

Today we remember the American servicemen who gave up their lives in order to protect our lives. We remember in humility and gratitude because we enjoy so much at their expense. We realize that we could probably not do what they have done in our behalf – and in our name - as Americans.

I am mindful of numerous generations in my own family which served in the various armed forces – all the way back to the American Revolution. I cannot thank them for what they did for me. So, I thank God for them and for giving them the courage to do what they did – to fight and die to make and keep us a free nation.

Americans have a lot of national pride. And lately that’s become a bit controversial. But, what is the source of that pride? In part, it is the memory of these Soldiers, Sailors, Airmen, and Marines. We swell with pride on their behalf whenever we remember them. We are proud of what they did and who they were.

They obviously believed that America and her ideals were worth preserving. Their lives and deaths testified to that. And the testimony that they left us is quite compelling.

My own dad was a United States Marine. He helped instill in me a love for my country and for the military. Even as a child, I was awed by the honor, discipline, and commitment of those men and women. I have always wanted to be like them.

I hope that I will be able to fight whatever battles that God gives to me with that same guts and courage as a Marine. After all, that fortitude is inside of my blood as much as the RA is. That mental toughness that I admire is part of my inheritance, too.

Sunday, May 24, 2009

Two Kinds of Site Reactions about RA

It’s been a week of site reactions. There were lots of positive reactions to the new blog site. After a few days, I realized that I was receiving two distinct flavors of responses.There have been those who were en- couraging: "Nice article”; Good writing”; and “Well done!” I am so grateful.

Then there were the reactions that came from those suffering with RA or another chronic illness. In some way, I think they heard my voice differently - like we are speaking the same language. They said things like: “This is so hopeful!” and “Wow, can we pray for each other?” and “Thank you, Kelly. It’s ok to say I hurt.”

Everyone was positive (Yeah!!) and everyone was sincere (I think!)

What I detected may be a symptom of the detachment which exists between the world of Rheumatoid Arthritis and the non-RA world. I have read hundreds of pages of RA blogs and forums and message boards over the last three years and at least as many times as I read, “It hurts,” I also read “No one gets it!”

I want to build a bridge. This blog is my first baby step. Please join me in working to disassemble the partition. That brings me to my second “site reaction” that I observed this week.

Normally, I would never share this with anyone (except RA-ers). But, here goes. I have been really suffering with an injection site reaction (ISR) to the Enbrel. It’s like a huge 4” bee sting on my leg. It’s hot and hard and itchy - it hurts. When I lie down, it feels like there’s a rock under me. This is the third ISR in a row, and each one is worse, and appears sooner after the injection.

It is amazing how much this ISR is like a bee sting. I wanted to post a picture of my leg, but it’s pretty bad. So, I decided to look for a pretty picture of a bee…

Maybe he can also inspire us to be like carriers of understanding the way he goes about spreading around the pollen. We can touch others lives like the bee, letting something also rub off on us like the bee. I am thankful for the way that others rub off on me and I hope that I can write things that will be penetrating – hopefully without all the itching, though.

Friday, May 22, 2009

When You Have RA, You Can Get Stuck in Orbit

Rheumatoid Arthritis can leave you stuck.

We who live on the Space Coast follow the Space Shuttle like most towns follow their local high school football team. When there’s a launch, people run out into the yard, climb up on their roofs, and cheer like it’s July 4th. What are fireworks compared to a giant rocket launch?

A large portion of the jobs here relate somehow to NASA or the facility at Cape Canaveral, which makes it feel even more like we are a part of that family. At my house, we even pray for the Nasa-nauts to be safe as they take off, de-orbit, or space walk. (Nasa-naut is the word my son taught us for astronaut when he was 2 years old.)

Well, Florida is awash right now; this is our sixth straight day of constant downpour. Roads flooded out, etc. So, of course, shuttle Atlantis scrubbed its landing this morning. No big deal, right? They can try to come down again tomorrow. And after that, there’s always Edwards Air Force Base in California.

Still, there is a sense of apprehension when the local space reporter describes the ways in which the Nasa-nauts have had to reduce power usage. They have to conserve power – just in case. They began to save energy a couple of days ago when NASA saw the weather report: rain in Florida with no end in sight and a few storms at Edwards, too.

Conserve energy, I smiled to myself. Wow, the Nasa-nauts and I have something in common. I constantly have to worry about whether I will make it home. I’m not usually in orbit, mind you. But I do live about an hour from most shopping or doctor’s appointments. I get myself out there (Orlando or Melbourne, usually) and then it’s all about how I will make it back.

Energy used to seem limitless. However, Rheumatoid Arthritis broke my fuel gauge a few years back. I read about it once in medical journal. No, they didn’t call it a gas gauge. But, doctors say that when you have RA, you are supposed to pace yourself carefully because you can no longer accurately judge how much strength you have remaining at any given time. It can be completely gone quite suddenly.

It’s like this: the fuel gauge reads ½ a tank. Two miles later, you look down and you’re approaching “E.” Then, you’d better get back quickly or you’ll be stranded in orbit.

Alas, physical energy must be conserved, but the engine inside the soul revs up just the same. Every day, I hear people with RA talk about the frustration of these restrictions and limitations. If physical energy remains limited, maybe we can become limitless at something else - like compassion or patience or joy.

We’ll learn new ways to express that powerful energetic enthusiasm of ours. And that way, when others are flooded out or stuck in orbit, we will still be soaring.

Thursday, May 21, 2009

Dr. Dolittle and Rheumatoid Arthritis

Who is Dr. Dolittle?

I saw this great article on Facebook about how much people with a chronic illness need doctors who will listen. Mainly people with RA read that page, I think. How could we get doctors to read it, I wonder?

Something funny occurred to me when I read it. I hope you get a smile out of it, too.

My kids were watching the old musical Dr. Dolittle. It’s the one with Rex Harrison and the cute pushme-pullyou animal which looks so much like one – no, two - of my mom’s alpacas. I know it’s old, but still delightful.

So Dr. Dolittle decides to become an animal doctor because he can’t get along with people, who he finds hypocritical and pretentious. He sings, “Why can’t people behave more like animals?” Of course, he means humble and honest and kind.

Well, later on, I was reading the article (When You Talk – Does Your Dr. Listen? Link below.) and this strange thing happened: Somehow the movie and the article merged into one. I had to laugh out loud. The song changed into, “Why can’t doctors behave more like people?” Of course I meant more humble and patient and kind.

I guess it was so funny because I still had the British accent and the music in my head. I could just hear Gubgub the pig squeal to get away from some rude and insensitive doctor the way he did in the movie when Dr. Dolittle said he’d consider eating ham again someday.

I know there are some very good doctors just as there are some good politicians and IRS agents. I don’t mean to offend any good doctors. Just the ones who might call themselves “Dr. Do Very Little.” So sorry. But, we are in pain, so we need to laugh every chance we get. Hope that’s ok.

The article really is great, seriously. The comment section is also quite useful. I would definitely consider printing a copy of it to share with friends – and your doctor.
Facebook article link

Wednesday, May 20, 2009

Transparency and the Wall

Communicating about Rheumatoid Arthritis

This post is an answer to my dear friend from Oz:
She writes about wondering why, as a woman with Rheumatoid Arthritis, I am usually so private about my health issues. She also praises me for "coming out" to write this blog. She wonders whether I had to overcome "false pride" as she did.

Wow. I never thought I was "coming out," so I thought about your letter all day. I did not ever try to keep my RA in the closet. (It is much to large to fit in there.) So, I am glad for the opportunity to explain how I got to be where I am.

No, dear friend, the reason I answer, "Fine" when asked about my health is not pride. I do not try to hide the RA. There are more complicated reasons for the lack of openness with certain people. I have always been willing to be honest about the RA, so blogging was not a giant leap for me. I love to share and network with others who are searching or hurting.

Now is the time when I will actually do what you thought I did already: be transparent when it is uncomfortable.

When I first got sick, I used to try to explain why I could not do things anymore. But people did not understand because they do not know about RA. People who knew me before I was sick did remember how I had been so agile and strong. However, nobody here knew me - since I moved here right before I got sick.

Sometimes, I was hurt as much from reactions to RA as from the RA itself. Reactions I have received include cold silence, changing the subject, comparing RA to a hangnail, and laughing out loud, "Yeah, right, like you are old enough for arthritis!" I was encouraged to get over it.

I could write a book - No two books: one book about the way I have been treated and a second one about all of the other RA folks who have told me the exact same stories. That's right! We actually swap stories because we trust each other.

Anyway, I won't ever write those books. Instead, I will put my energy into making a difference. My humble goals:

1) Education of the whole world about what RA really is.
2) Helping a few RA patients to get more out of their lives.
3) Be one tiny (but bright and shiny) dot in the "connect the dots" puzzle of curing RA.

So there you have it, my small friend in the sparkling red shoes!
It isn't pretty. It isn't pride. It's plain old self preservation that made me do it.

I promise I'll do my best to follow my own advice: share with those that will listen, but not feel responsible for others' denial. Sometimes, that denial is a wall that is too high to scale. Didn't I tell you that I have a disability, after all?

Tuesday, May 19, 2009

Be Your Own Counselor with RA

Fighting the Depression of Rheumatoid Arthritis

It is great to have a friend. And sometimes professional counsel is necessary. But today I was thinking that we can also be our own therapist.

Here are some ideas that I tried not to let get away...

No, the really natural kind: endorphins. Do something that releases endorphins. There are some foods, like dark chocolate, which can lift you up.
Laughter will rush them thru your blood So read the comics, or make a funny face, for pete's sake, just laugh.
Even crying, if it's needed, can release some relaxing chemicals.
Exercising, if you are able to, will give you an endorphin rush.
If you know more ways, please share!

This is not just think happy thoughts. It has to be true; it won't work if it's a false hope. But there is always some hopeful truth you can find. Here are just a few examples:
It may be science: They are looking for a cure.
It may be simple: Soon, I look forward to lunch with a friend.
It may be silly: My dog still loves me.
It may be scripture: God's mercy is great. Heaven will be awesome.
Repeat this truth quietly throughout your day. Ruminate upon it the way you usually do with your problems. Let it counsel you.

Changing your environment can change the picture and make you see things in a different way - or see something you did not notice before. For me this is going out and looking at the sky - day or night. Or seeing the ocean or some wildlife. It's more than just a distraction; it is regaining a perspective that is more accurate. Our problems are actually kind of small disruptions in perspective to the whole of the natural order of things.

Music is like an IV. Somehow God made most of us able to receive truth directly into our souls through music. It is a powerful resource we probably ignore because we think it takes too much time. But if we say we don't have time to listen to the music that we know will uplift us, maybe we should counsel ourselves about our time / priorities. Besides, there's time in the car, as we eat, while we dress, do chores...

Ask yourself whether this is the person you want to be.
Maybe it is a habit that should be picked up or put down.
Maybe we can make a small course correction today. Or a big move.
Maybe we can reconsider something we once set aside: like faith in God; or a certain friendship.
Whatever it is, we can question the status quo and encourage ourselves to move on down the road.

Monday, May 18, 2009

Rheumatoid Arthritis left my glass half-full

I knew the glass was half-full.

Two months ago, I could do about half of what I could do before RA. The dr.s kept saying I should be getting even better. I really wanted that, too. The doses of my meds were as high as they could go: Humira weekly (that's a double dose); and methotrexate 25mcg by injection (much more is absorbed by injection). Maxed out at those, my functionality was at about 50%.

So, when the dr. said lets try something else, I was game. Well, we went to Enbrel, which works almost the same as Humira. But, Humira is a long acting 2-week dose and Enbrel is a weekly dose. I asked the dr. and two pharmacists: Are we essentially cutting my medicine in half? They all said, "Not really."

Every time I inject myself, I pray that it will help me get well. And then I thank God that I have the medicine and remember those who have had RA without these strong drugs to help them survive it. It really does help me remain hopeful - not to mention how that helps me stick myself.

Well hopefulness aside, it's been over a month. I am 5 shots into the Enbrel regimen, and it's not looking good. Every week is worse. I am productive only about 2-3 days per week now - sort of.

There is a lot more pain, of course. There is stiffness and weakness. There is fever, nausea, and lack of appetite. But the worst are the Sjogren's syndrome and the fatigue. Sometimes, I literally cannot move. I cannot lift up my head.

There are no words to accurately describe how desperate it feels. The tiredness is so extreme. I feel like I'm falling down a hole in a cartoon; I keep sliding downward and there is not a bottom. Gravity is so strong.

Now, I am kicking myself for changing the prescription to begin with, of course. I knew the glass was half-full. I was grateful for that. What will this cost me? All of the suffering I could describe is nothing at all compared to knowing the unseen damage that it is causing within my tendons and joints and my eyes and my nerves.

But that's not the worst. The worst thing about my half-full glass having spilled is the time that is gone. Calendar pages fly by and my life is going on without me. Ouch.

I want my half-full glass back. And next time, I will put a sippy cup lid on it.

Sunday, May 17, 2009

Rheumatoid Arthritis can make you patient

Rheumatoid Arthritis is this mean and evil disease. But you can't hate it because hate only tears up the hater. Hate never hurts the target, so I learned a long time ago that forgiveness is the healthiest way to live. However, forgiving RA won't make it go away...

There is no cure for Rheumatoid Arthritis, no way to make it go away. People with chronic diseases become more and more patient because they have to wait forever for a cure. I know a lady who is very patient. It is polio that made her so.

I am learning patience. I am becoming more patient. And there are plenty of opportunities to exercise that patience muscle. For several months, my website has been progressing slowly... The RA keeps knocking me down; and I keep getting up.

Someday, it will be up and running. And let's hope some day I will be also.