Friend of Rheumatoid Arthritis Warrior Shares Her Heart

I am so lucky to know a dear lady who sends me letters of encouragement about this blog. She is the widow of a man who lived with RA. I always wish everyone had an opportunity to hear some of her clever and uplifting words, so today I am sharing some of them with you.

I give you my friend Dorothy, one of the funniest senior saints in the world. I hope you can hear her smile.

You know what Rheumatoid Arthritis is because your husband Gil had it, right? I know what it is and every effort you put forth is sometimes like taking money out of the bank. It is NOT like, "If you would just exercise those joints, all this would go away."

How did his RA start?

He was also a florist. It became difficult for him to even cut the stems. That is when we noticed the decline, which got severe in a short time. Most noticeable PAIN was in his hands. That is why I cringe when I think of squeezing your hand that day, but within a few months he began to have difficulty walking. He ultimately had to use a wheel chair. Remember that he was also dealing with the COPD which is probably unrelated, but compounded the RA issue.

How did people react?

ABSOLUTELY MAGNIFICENTLY! They were compassionate, supportive, loving. When Gil could no longer leave the house, they came to see him. He was so active in the church. The RA was an added burden that did really COMPOUND his original problems, causing the additional pains. And, ultimately crippled him.

Do you think you understood?

Even though I saw my husband suffer so much to the end, I am sure there is something missing in MY comprehension of exactly how it is because I personally have not endured the physical suffering. Only the pain of seeing someone you love suffer. And there is the impotence you feel in watching and not being able to help. But, it is still not the same as being the victim, of course.

Thought for the day: Never criticize a person until you have walked a mile in their shoes. That way, when you criticize them, you are a mile away from them… and you have their shoes.

People just don't have a real sense of the depth to which it reaches and the attack it renders on the body.

Do you think anyone else understood?

It is difficult to relate to RA unless you have it. I agree that a person who has not experienced RA cannot have that level of understanding & compassion. Somehow, "I know how you feel" sounds like a platitude. And you want to shout out HOW IN THE H... CAN YOU POSSIBLE KNOW HOW I FEEL? Can YOU move your arms today without screaming? Can you pick up a bag of groceries? Can you carry a pot to the stove? Can you cut a flower stem to make an arrangement for your church? Do you PRAY no one will squeeze your hand when you greet them? Then how can you know how I feel?

Do you read the blog?

Sometimes I think I am a SPY because I do not have RA. But you are such a beautiful crusader for this cause that I feel compassionate and enlightened by each message I read. HEY, I loved your "compassion" message to Mrs. Smart a_ _, uh Toes.

SO often when I read the joyfulness, then also the sadness, in your messages, I realize that in addition to the agony of having to live each day with a crippling disease that was in charge of everything Gil did - that controlled his entire body no matter how optimistic he tried to be. It was frustrating to see that even those close to him, didn't have a clue. Maybe even myself.

What was the hardest part?

He did not want PITY... just understanding. As I think you do also. It is LONELY out there when you are the only one who understands anything. And especially something which controls a MAJOR part of your life. No, he DEFINETELY did not want sympathy, but, yes... understanding. Here was a man who sewed all the drops and costumes for VBS, made CHOIR ROBES, did all the flowers for the altar. He bought them wholesale – RAW - and he cut them, arranged them, and carried them to church.

Later, we had to get them for him... he would try to tell us where to cut because his hands could not manage to cut through the hard stems. And later, we even had him tell us where he wanted them to be placed in the arrangement. He would not give it up. When he was wheelchair bound, he would have us take him to the church hall so he could instruct the others to make the VBS stuff.

So, if he had a GOOD DAY, a well meaning friend would say something stupid, like, "Well, I bet you are glad THAT crud is over" or like "Glad you are your old self again." They did not have a clue.

Maybe when YOU hear stupid stuff like the lady at the beach, it is NOT that you want them to feel SORRY for you. You just want them to UNDERSTAND. You want them to be EDUCATED about RA.

You, Mrs., have 5 kids at home! You are NOT a "gimmee stuff princess.” You do NOT want sympathy - just understanding as Gil did.

He just wanted it to be OK if he was not the same as before and if he had to back off some things. Rather than, "I guess you are tired of doing the flowers... or the VBS... or anything." Like he was glad to get rid of it. He HATED to give up ANYTHING.

What did you wish people knew?

Adding to that, I believe, is the frustration of the cavalier attitude and responses of those with NO CLUE where RA has taken a person. The road it has forced you to travel and I believe THAT is the - well, maybe even hurtful part. You shaved so "you must be all BETTER" as if a miraculous cure had taken place. Like when we get over a COLD, and feel great now. They never knew how laborious it was for him to shave, as it may be for you to wash and fix your hair, then hear, "OH, you did your hair. I am so glad you are all better."

You have been a big help to me by sharing so much about Gil.

Thank you, Kelly! Thank you for being transparent in this. I am transparent about my Life, my faith… everything except my health. I am always "FINE" … "GREAT,” etc. You make me realize that sometimes it is OK to say, when you responding to a friend, to someone who really cares, "I feel terrible", "I hurt", "I am having trouble breathing today."

Thank you, Dorothy, and I do feel like you understand.

That's why my prayer for you is constant: That God fills you with His peace and His strength so that each time you go through a tunnel, you can SEE His beacon lighting the way for you, leading you back to the mountain top. I somewhat love you, you know.

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