Wednesday, June 22, 2011

Bye Bye Bitch

It's been a long time since I've sat down and wrote in this blog. For the past 2 years I've been very lucky. I entered a drug study for a potential new RA drug called CP690-550 or, as it's better known as now, Tasocitinib. For me and the others in my study group, this drug has been extremely successful. Given this positive reaction and success, I began to feel like I didn't belong in the RA community anymore. I wasn't able to relate to what others were going through anymore. I felt horrible talking about my improvements when others were clearly not in the same place as me. I actually forgot that I have RA. That's how good this drug is. Oh the occasional flare would happen but nothig I couldn't deal with by taking some Advil.

Lately the flares have been coming more and more. But as usual I ignore the reason why. Even on really miserable days like last week when I couldn't eat because my jaw was so inflamed. I couldn't even swallow water. But I still pushed it out of my head that I have RA.

Yesterday I found out that the owner of one of the blogs and a Facebook page I read regularly died. I don't know her real name or where she is from. I don't even know what she looks like. I only know her, as many of you do, as RA Super Bitch.

RASB was one of the first blogs I started reading after I was diagnosed and discovered how helpful the world of blogging could be. RASB made me laugh. She made me cry. She made me feel safe complaining. She showed me it was OK to be angry because I got dealt shitty cards. But she also showed me I could be strong.

I never thought that the death of someone I didn't know could affect me so much. It's been dificult to not cry when I think about her. but then I realized that I did know her. She bared her soul to her followers. Her death has made me realize more than the occasion flare that I do still have RA. No matter how good I feel, that can change at any time. My life is still affected by this shitty disease. I could still die from this shitty disease.

I need to remember who I am and what I've been cursed with. I need to remember the community of unseen faces and unknown names who helped me during the most difficult time of my life.

RA Super bitch, you will be truely missed my friend. You were an inspiration to all of us. You have left your mark on so many people. You were a powerful piece of positive. Despite your own pain and suffering, you were a bright light for me and so many others. You showed me it was ok to bitch once in a while because I earned that right. Your memory will always be in my heart. I will carry your spirit in my soul. I will remember you and what you faced every day whenever I feel the need to feel sorry for myself. I bet you're making God smile now sister!

Peace my sister,

Wednesday, August 26, 2009

Everyone, Meet My New Rheumy!

So I met Dr. Q today. He is fantastique! He spent an hour with me! AN HOUR!!! Who does that any more! He listened to my whole long story. He was dumbfounded that my old PCP didn't do any other bloodwork besides a Sed Rate & CRP when I went to him for all my symptoms (fluid on my joints, joint pain, joint swelling, extreme exhaustion) over the 2 & 1/2 year period.

We talked about the drug study that I'm doing and he seemed very impressed with my progress. He was curiuous about what my Sed Rate and CRP are now so he ordered some bloodwork. He is checking my Vitamin D level and thyroid to see about this exhaustion that keeps showing up. He's also checking liver functions and all that happy horse shit.

So needless to say, I am very eager to find out what my Sed Rate & CRP is. I'll let you know!

An ADK Anniversary

Last week marked the one-year anniversary of me finally finding out what the hell was wrong with me. To refesh, a doc in the ADK diagnosed me after my doc fell down on his job......for 2 years. It's been a long year and a difficult journey. Meds and pain and misery (oh my). But I feel like I have leveled out.

Last week we made our annual pilgrimage to the ADK. It was better than I had hoped. First and foremost, I got to spend a few days with a very old and dear friend and her family. Secondly, all the worries and wonders I had prior to going were unfounded.

Packing is like an olympic event in our house. We have to pack for 4.....OK, who am I kiding.....I have to pack for 4. Plus we have 2 large bins full of camping equipment plus we now have a canoe. Most stuff wasn't too difficult to pack and load.....Scott helped alot with that. My worry was how the hell was I going to lift my end of a 70 pound canoe and get it on and off my truck? Well, I was actually surprised that they only difficulty was that that thing is damn heavy! But Physically I was able to get it on the truck and I had no issues after. My friend's hubby helped Scott get it off when we got there. Thanks again Marty!

We tent-camp and haven't had an air-mattress in a few years.....ever since the mice made a snack out of the old one. I kept meaning to buy a new one but never seemed to get around to it. I really worried about sleeping on the ground this year. Was I going to be able to get up in the mornings? Would I be stiff? In pain? I am happy to say that I had no issues sleeping on ground. I really was surprised. I thought I was going to have to go to the nearest town and buy an air matteress. I hate setting up and taking down my tent. But even more, I hate the thought of possibly having to buy a camper some day in the near future. I always have to keep in mind if I even should be sleeping on the ground.....padded or not. This year I was able to stay camper-free.

Another worry was, would I even be able to do anything? We usually hike, canoe, walk, walk, hike, swim, shopping day in Lake Placid, etc. You get the point. We haven't hiked a mountain since we've had the kids. (I wanted to this year but didn't find a small enough one that my daughter may be able to do until the day we left.) We did a lot. I don't think we sat around one day. The easiest day was probably the day we canoed. Although I had to remain very conscious of how I held the paddles, it was surprisingly easy. I did have some muscle pain after but nothing more than a workout burn. Swimming was great. I was in the pond almost every day. And all the walking we did (which was my biggest worry) no problem.

So all in all, it was a great vacation. Honestly, the most difficult things for me were coming home (only because I would love to live there) and being away from my blender and juicer for a week. I can't wait to make my reservations for next year!

Tuesday, August 4, 2009

Stepping Up My Running Game

Today was a great day in so many aspects. Me and the kids went to my siser's house for some sun and swimming. My sister's fiance's daughter is here visiting and my niece was also there. My cousin Beth came over with her too kids and my grandmother brought my uncle's son.

It was great to see the kids play. I love watching my kids play. I love to see their immaginations come to life. They were playing one game in the pool that they made up and they decided that the winner was going to get to dress up Chris (my sister's fiance') to look like a girl.....right down to balloons and a bra.

I also love to watch them solve their own problems. Too often as adults we interfere where we shouldn't, not letting them become independent thinkers.

One of my favorite parts of the day was watching the kids interact with Christopher. Christopher is my cousin's nearly 3 year old son. He was diagnosed with autism a few months ago. I love to see him because I can see new things every time. Today he was having a ball with my son Connor. Connor was so protective of Chris. Whenever Chris wanted to go on the slide, Connor followed him up the ladder and encouraged him on. Then he ran around to the bottom of the slide to catch him when he came down. He made sure that the other kids were careful and aware of him as he climbed the swingset.

Chris seemed a little more into me today too. Sometimes he looks at me like I'm a crazy nut. He let me push him onthe swing and when I wasn't doing i high enough he told me so. At one point, Chris and I were playing peek-a-boo by some bushes and I got the feeling he was urging me to chase him. He would run a few steps then stop and look at me then run a few more steps, stop and look at me, you get the picture. Running was the last thing I would have ever thought myself doing today but I figured, what the hell. He's only 3 so I gave chase. It was the best feeling! I got to run with someone who wasn't gonna leave me in the dust. Actually, he stopped every few minutes to let me catch him and tickle him. (Maybe he sensed that I would need to stop briefly to check myself.) Then we would run some more. I know how good interaction with others is for Chris. Today it was good for me too. He allowed me to do something I have been afraid to try for a while. Run. Even though I know how good I feel, there is always that fear that I'll do something to ruin it. Today that never occured to me. My only thought was, "How awesome is this! Chrissy's leting me chase him and catch him and tickle him!" The only thing I saw was Chris having a good time and laughing and interacting and playing. I was elated with that and with myself. I was so elated that it carried over several hours later when.....

"Daddy, you said we could go play tennis tonight." That was my son reminding my husband of his promise to go to the tennis courts down the road.

A couple of days ago when this came up I was horrified. Of course I would be expected to go. And I would be expected to participate. And all I could think was , "Yeah, I'm gonna be walking around the tennis courts. Great fun!"

Tonight, my mind-set was different. Mainly it was due to playing with Chris. I figured kids really aren' that great at tennis. Mackenzie only hits the ball once ever dozen times. I can just sorta stand there. No problem. Well, Connor was much better than I expected and he had me running.....literally RUNNING! I was no where near as active as I was the last time I was on a tennis court but I didn't have to stop and say, "Sorry kids. Mommy is in too much pain to play." I was able to keep up with them.

I'm trying not to think about tomorrow and if I'll be able to function. I'm just going to listen to the sounds of Chrissy's giggle and my son saying,"Jump higher Mommy!" as I remember the day that I finally stepped up my running game to play with a child.

Thank you Beth for sharing your son with me today.

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.