The Harsh Journey of Rheumatoid Arthritis Requires a Pillow

Rheumatoid Arthritis Warrior Road Trip

The blog will be a bit different for the next few days. I will have to be on the road. But I hope you will be able to come with me – at least in spirit.

I plan to disclose more about the trip over the next couple of days. I will be sharing the driving with my bff. We will be bringing some daughters, too. There will be plenty of estrogen in the car. And chocolate.

The last few days have been very difficult physically. The Rheumatoid Arthritis in my neck (cervical spine) has been very inflamed. At times, I can hardly hold up my head and it brings blinding headaches with it. Also, knees and ankles.

I have been amazed at how God has helped me to get packed anyway. The girls have done a lot of it for me, but I still did much more than I thought I could. I was running on NSAIDs and adrenaline.

The adrenaline even let us catch a glimpse of the old me for a few moments:

I had bought this travel pillow a few months back. I frequently use it in the car, but still with the original plastic bag on it. I kept hoping to someday sew a pillowcase for it, which would make it a lot more comfortable. Of course, I had given up that for now since my hands hurt far too much to cut fabric.

Today, I was cleaning out a compartment in the ‘Burban and found a couple of fat quarters I had planned to return. That’s quilter-speak for a pre-cut section of material. Like skirt steak for sewers.

I opened them up and suddenly realized that 1 plus 1 equals 2! And two fat quarters obviously equals one travel pillowcase. With no cutting.

This evening, I followed my impulse and made my nice smooth case with French seams and a deep hem. It will be a good thing to have. I was glad to see that plastic bag go in the trash.

As useless as those fat quarters had seemed as they waited to be returned, they were exactly what I needed. I just had not noticed that. That is okay; they were willing to wait for me. (Lord, is there anything else you want to show me? Please make me ready to see.)

PB (post blog)
I will check in with ya’ll soon from the road. If you would like to see more frequent updates, please check in with the Facebook page; I usually make more frequent posts there. Or follow me on Twitter. Bon voyage.

Need more?
Why every voice about RA counts: The Invisible World of Rheumatoid Arthritis Speaks

Curious: What is the difference between Osteoarthritis and Rheumatoid Arthritis?

RA Tips: Practicing Preventative First Aid for RA

6 Ways to Get Hard Projects Done With RA

How to Scheme to Get Something Done in Spite of Rheumatoid Arthritis

Remember the old movie “Honey, I Shrunk the Kids”? Sometimes I think I am living in it! Everything in my world is too large for me now. Cups of coffee are too heavy to lift; dishes are too heavy to wash; pulling on a gas pump feels like wrestling a python.

I feel a bit helpless most days… but I like to look on the bright side. So, I am repeatedly thinking, “Is there any way for the new me to ever tackle a big project again?” Of course, for some of them, the answer is clearly, “NO.”

No, I can no longer lift 50lb. bags of concrete. No, I cannot move a ton of fill dirt with a wheelbarrow. And, NO, I will not be planting trees or trimming them 15 feet above my head.

However, I have amazed even myself with some of the things that I have gotten accomplished over the last few years. Every day is different, as many of you know. So, I always hold out hope that there will be more good days coming and I still keep a list of projects I wish to accomplish “someday.”

After yesterday’s post, I thought we could all use a little encouragement as to how to approach those “larger than life” sized tasks with our new “reduced” abilities. For the things we still keep on our lists, here are my suggestions:

How to do big things with undersized ability:

1) Plan. Plan out the details and study the process to mentally prepare. Get an accurate view of what steps you will need to take.

2) Find different tools. Take time to gather tools which will be more appropriate for you: smaller, lighter weight, and higher quality. Examples include child-sized garden tools, smaller sized professional paint brushes, and soft rubber mats to kneel on.

3) Ready, set, wait. Gather all of your supplies and wait for a good time. That might mean a good shoulder day or a good hand day. It might mean a week with no doctor’s appointments. If you plan ahead, when a good moment comes, you will be able to seize it.

4) Enlist help. Find someone to partner with you, even if you are a big DIY-er. He / she can help with little tasks like opening cans, carrying tools to the site and setting them up, and cleaning up the utensils or trash. This allows you to preserve your strength for the actual task. Also, helpers are your back-up when you need a break. (I cook this way with my kids almost daily.)

5) Work in bytes. Take frequent breaks. I have painted a room this way: paint for 15 minutes… lie on the floor 15 minutes… Rinse. Repeat. Your new motto is “PATIENCE MAKES PERFECT.”

6) Do something else. No, I don’t mean give up! But think outside the box. When I bought a $10 chair at the Salvation Army, I thought I would just re-upholster it as always. What was I thinking? I don’t have the strength to pull and staple!

After I thought about it a while (only one year!), I realized I might be able to sew a sloppy slipcover instead. Maybe you can think of something different which will be just as good, but more feasible for you to undertake.

By the way, I used every step on this list to accomplish my chair.
So, what is on your list? Is it making jelly or homemade pizza? Writing a blog? Planting flowers? Taking a road trip? Sewing a baby quilt? Teaching a class? Building a snowman? (Still on mine!) Don’t just do something; sit there. Sit, but scheme.

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.