Saturday, July 25, 2009

An Effort To Understand

Today I atended the graduation party of a boy who is the step-son of my bff Katie and son of one of Scott's bfs Ben. Well, being gluten-free and dairy-free does have it's challenges when you're out in public so before I put anything on my plate I had to go thru my rounds of questions. "Is there cheese in the meatballs?" "Is there butter on the chicken wings?" etc. Staying away from gluten was easy. Just avoid the bread and pastas. I got a few raised eyebrows and Katie helped out by asking also. She explained that I couldn't eat any dairy.

An aquaintance of mine that I met thru Katie was also there. The dairy questions didn't go unnoticed by her. She asked me if I was lactose intollerent and I said no but didn't elaborate. We got to talking about her fiance's knees and all the pain he has been having with them. (Her fiance is the brother of Ben.) I asked her if he maybe has OA. She asked me what OA is so I told her it was ostheo-arthritis. I gave her the name of my orthopedic surgeon and we continued to talk.

After about 10 minutes, my RA came up, as I explained to her why I wasn't eating dairy or gluten. She asked mw what it was so I just simply said that it's an auto-immune disease. She then asked someting that most people didn't ever ask after I would say "RA is an auto-immune disease." She said. "What does that mean exactly?" She was searching for answers. I was floored.

We spent the next 20 minutes or som talking about RA. Well, I talked and she listened. She really took a genuine interest in it. She asked about treatments and I explained the difference between NSAIDs, DMARDs, and Biologics. I told her what led to my diagnosis. I told her about my treatment now.

I can't tell you how refeshing it was to have someone who I really don't know that well to actually be geniunly curious. There were no comments about how "It sucks to get old." or "Have you tried Aleve because that helps my arthritis." or any other silly comments I've gotten.

So my fellow RAers, there is hope out there! There are people who don't know this disease from Adam that are willing to learn about it! WOOT! Now if we can only get more on board!

Thursday, July 23, 2009

We Are The Champions

champion (noun):
1. one that wins first place or prize in a compitition,
2. one who is clearly superior or has the attributes of a winner,
3. an ardent defender or supporter of a cause or another person,
4. one who fights,
5. a warrior

As you can see from the above definition, the word champion mean several different things. This blog will encompass all five definitions.

As a hard-core NY Giants fan, it was sometimes difficult growing up in a family of primarily Buffalo Bills fans. To make things more amusing I went and married a Dallas Cowboys fan who comes from a hard-core Cowboys family, except Uncle Jimmy who is a Giants fan. And now I have struck up a wonderful friendship with a Redskins fan. Who woulda thunk it?

My new Redskins-fan friend and I were bantering back and forth and doing our own style of "mud-slinging" and the last comment I sent her was this lyric from an ever-popular Queen song:

"We are the champions my friend. And we'll keep on fighting 'till the end."

When I sent it, I was in a football frame of mind. But after I sent it, the song started playing in my head and soon found myself in an RA state of mind. I started thinking about the owners of the blogs I follow. My "RA Club" (I was never really in a club before. Hell of a club to be in.) It occurred to me just then that we all are champions.

We are champions of so may things. We are champions of walking across the room, of picking up a coffee cup, of weilding a pen or pencil, of climbing a flight of stairs, of taking a walk with our kids, of walking thru the sandy beach, of weeding the garden, of riding a bike, of cleaning the house, of cooking dinner, of getting thru a yoga routine, of being intimate with a significant other, of hugging a friend...... I could go on and on and on but I think you get the point. We, who have been so unfortunate to be forces into this "club" are champions of doing the everyday things that most people take for granted.

And if it's not bad enough that we have to deal with our own body attacking ourself, we also live witht the fact that he meds we take to combat this enemy may do more harm than good. Our immune systems, in many cases, are shot. Since that is what is attacking us, it has to be stopped. We also have to be mindful of cancers, liver damage, TB...shall I go on? We also live with the fact that RA can potentially cause heart, lung, and other organ damage/failures. Oh happy days.....

All of you non-RAers out there who are reading this.....I have a few questions. When was the last time you were glad you to have the ability to tie your shoes? When was the last time you realized how lucky you are to be able to dial a telephone? When was the last time you felt grateful for being able to get out of bed? When was the last time you were glad that you could clap your hands to applaud for someone or something? When was the last time you felt blessed to be able to walk, run, skip, jump, or cart-wheel? When was the last time you thanked the higher power you answer to for allowing you to live pain-free every day? These and so many more abilities are taken for granted by most people. Simple things that many RAers just can't do. It's not because we're lazy. It's because we honestly can't do it. Below is only my story. There are thousands more like mine, many are much worse.

Within 5 months of my diagnosis I was in a constant state of exhaustion. If I had my way, I would have never left the house. I was unable to do many things, including the following:
  • wear my rings because of swollen joints
  • write legibly because I couldn't hold a pen or pencil
  • pick up small things without excruciating pain
  • straighten my left arm past 120 degrees due to an elbow contracture
  • touch the palm of my left hand to the back of my left shoulder because of the contracture
  • go for a walk with my kids because I could barely walk
  • ride a bike
  • wear flip flops
  • walk barefoot
  • twist and bend my wrists
  • walk up and down stairs (I did because I had no choice in certain situations)
  • hold a glass because I couldn't curl my fingers around it
  • pick up a coffee full cup
  • pour myself anything
  • carry heavy things
  • paint my fingers and toes, again due to small joint swelling

The list goes on. If I didn't have to bring my kids to school and go to work every day, I probably would have become one with my couch. But I didn't. Why? For the same reason the rest of us push ourselves to do the sometimes impossible.

No one ever really heard me complain. Why? How long would their sympathetic ears last? Probably not for long. No one likes a complainer.

I never asked for help. It was offered but I didn't ask. Why? I didn't want RA to take my inependence.

So, now for the definition. How does it work out for RAers?

1. We're not looking for a first place trophy in this competition with RA. We're looking to win it by total annialation of this disease.

2. Every day that we fight by any means possible, whether it's tying our shoes, going for a walk, taking meds, do something that RA prevented us from doing before,whatever, we are the winner.

3. We unconditionally support each other and the cause to find a cure for this disease.

4. We fight every single day.

5. we fight because we are warriors.

We fight RA every day with meds, diet, by our blogs and fb pages, by force. Why? Because none of us want RA to win. We will continue to fight this war every day until our enemy is defeated. Why? Because WE ARE THE CHAMPIONS!!!

I've paid my dues Time after time I've done my sentence But committed no crime And bad mistakes I've made a few I've had my share of sand kicked in my face But I've come through

We are the champions my friends And we'll keep on fighting till the end We are the champions We are the champions No time for losers 'Cause we are the champions of the world

I've taken my bows And my curtain calls You brought me fame and fortuen and everything that goes with it I thank you all But it's been no bed of roses No pleasure cruise I consider it a challenge before the whole human race And I ain't gonna lose

We are the champions my friends And we'll keep on fighting till the end We are the champions We are the champions No time for losers 'Cause we are the champions of the world

Monday, July 20, 2009

You Move Differently

I was talking to my friend Cherie this morning when I dropped my kids off to summer camp. Cherie teaches yoga and movement at the school that my kids attend. We were discussing a variety of things and how I have been feeling, my diet, and meds briefly came up. Cherie made the comment "You move differently". I agreed and jokingly said, "Yeah I don't limp anymore." We parted ways and as I was driving, I started thinking about what she had said and realized exactly what that statement encompased. She was right. I really do move differently. There is no caution when I take a step. I'm animated again when I talk. I used to be a huge hand-talker (Italian) and one day it just got to be painfull to talk with my hands. Now I notice that I do it more. I can't sit still. I did it for so long because it hurt to stand, now I don't want to sit. I pace when I'm on the phone. My posture is different. I stand diferently. I drum and tap on the table again. I know it's annoying but now that I can do it again pain-free, I do it constantly. And yestreday I tore up 2 large pizza boxes (non of which I ate!) to put in my composter. I CAN TEAR CARDBOARD!!!!! So Cherie my love! Thank you for noticing what I had not.....I MOVE DIFFERENTLY!

Wednesday, July 8, 2009

Drug Study: Month 1 Appointment

So I had my month 1 follow-up. The doctor was totally amazed (and I know he was amazed because he kept saying, "This is amazing") that the contracture on my left elbow and the fluid sack on my right elbow are completly gone. He also said that he has never seen a fluid sack like that totally disappear before and although he has seen contractures get much smaller, he hasn't seen them totally disappear. I had only 2 swollen joints and those are still the outside area of my ankles/feet. However, the swelling is lessoning. Maybe by month 2 they will be completely unswollen. We shall see.

Monday, July 6, 2009

The Flare Roller Coaster

The following video was created by Rheumatoid Arthritis Guy, the newest RA superhero. This is a pretty good description of what an RA flare can be like.

Friday, July 3, 2009

Great RA Info On Wikipedia. Thanks Beth!

My cousin added the following link after she read my last post. You can't click on it for some reason so I wanted to add a new post with the link. So RA Club Members, if you don't want to explain or you feel lke you can't do it justice, send the "non-believers" this link or tell 'em to wiki RA.

Walk A Few Feet In My Shoes

Normally we hear or use the saying, "Walk a mile in my shoes". I decided to title this post "Walk A Few Feet In My Shoes" because the reality for many people with RA is that walking just a foot or two can be the most difficult task they do on a daily basis. This post was my response to a blog entry from Kelly. You guys know her as RA Warrior. The link for the post is below for you to read if you choose. She blogged about people not really understanding what RA is and how it can make those living with RA feel.


Well kids, as much as I would like to make a list of people who I want to spend a day in my shoes, I don't know if I would wish this disease on my worst enemy. And, luckily, even tho I've been feeling really good from the meds I'm on, this is still an every-day battle.

There are so many other things aside from the pain and swelling. Between knowing I can never have anymore children to my diet changes to the monthly blood tests to the possibility that I may not be able to stay on this med long-term to organ damage, etc who would want all this?

So aside from wishing this kind of pain and lifestyle changes on others, how about if we just start saying to these people in out lives:

"I'm sorry that you don't understand the disease I have and what I'm going thru. When you have an opportunity, Google RA. Maybe if you read about it, it will all make more sense to you."

I was very leary about telling my friends and family. There are still some people that I am sorry I told. But I figured that people were gonna notice something was wrong. Most days I couldn't walk easily and my hands were in a state of what I like to call perma-swell.

Surprisingly, a couple people were aware of what RA is. A few others asked for clarification. A couple people acted as if I was on my death bed. But most people had no clue. All they heard me say was the word 'arthritis' and then the assumptions began.

I still have to remind people that I don't have creaky joints, and it's not about getting old, and my body isn't wearing out, and all the other responses I have to come up with as answers to the stupid things that people say.

I have also gotten so much unwanted free "medical advice". Anybody else get that?

What I have found is that the people who are in my life who really want to understand are making the effort. They will take my diet changes into consideration. They ask how the drug study is going, is my bloodwork ok, am I still OK on the stairs at work, bring me gluten-free beer, and follow this blog, my Non-Dairy Queen blog & FB page, and follow RA Warrior's FB page. I have friends who follow Kelly's RA Warrior FB page simply for me.

I have also seen more clearly something I always knew.....people fear what they don't understand. Think about it. Where does discrimination come from? Fear. We discriminate against race, religion, creed, nationality, and disability. I have to wonder how many people actually do understand what RA is and have such a blinded view that they are fearful of the worst. I would never ask my BFF to help me walk or anything like that even tho I know she would in a heartbeat. But is that fear latent in the people in out lives? Are they afraid that we may ask for help?

Maybe someday they will really get it. Maybe they won't. But I can't keep worrying about it. If I'm worth it to them, they'll make an effort to really learn about what I'm going thru.

Thursday, July 2, 2009

A-S-S Revived

One of the earlier symptoms I experienced during the on-set of my RA was a hoarseness in voice and a tightness in my throat. I didn't know what it was. Many times while I was talking, it would cut out. If I put any strain on it at all above a normal volume, it would go completely. I had no idea that my voice issues were related to the other symptoms I was having. It wasn't until I started researching RA that I discovered it can affect your vocal chords, voice, and throat.

Since it was hard to raise my voice above normal to talk, imagine what it did to me to sing. This was a real bummer for me because I love to sing, especially in my car. Now I'm not saying I'm any good at it. As a matter of fact, I suck. But I enjoy it. My favorite place to sing is my car because I can crank the radio and no one has to hear me. It's kind of a release for me, especially when I have something like Metallica cranked. Right now, my favorite accompaniment is the new Shinedown CD. So yes, I must admit it. I have A-S-S.....Automobile Singing Syndrome.

I had to give it up for quite a while because I was really afraid that I was going to blow my voice out. But since I've been on the study drug, it has made a difference in my voice. I'd like to say that it made it sound better but, alas, my singing still sucks. But at least I can do it again! So, yay for me! My A-S-S has been revived!