Great news today!

I got this email this morning from the Arthritis Foundation:

We were on the schedule for September 28...then postponed.

We were on the schedule for September 29...then other bills required lengthy debate.

Finally, at 12:48AM on September 30, 2010, the Arthritis Prevention, Control and Cure Act passed in the United States House of Representatives without objection. Only ten minutes later did the House close up shop until November 15th. A big thanks to all Arthritis E-Advocates, Arthritis Ambassadors and Representative Anna Eshoo (D-CA) who shepherded this bill through the House.  We've come a long way!

	H.R. 1210 Introduce by Rep. Anna Eshoo	February 26, 2009
	Sent to House Energy & Commerce Subcommittee on Health	March 2, 2009
	Hearing in House Energy and Commerce Subcommittee on Health	September 15, 2010
	Amended at mark-up by House Energy & Commerce Committee	September 23, 2010
	Passed by the U.S. House of Representatives	September 30, 2010
	Passed by the U.S. Senate
	Signed into law by the President

It's on to the Senate and now, more than ever, we need your support.  When Congress returns in November we will have only a short period of time to get the bill out of the Senate Health, Education, Labor and Pensions Committee and onto the Senate floor for a vote.  Please take a moment to write your Senators and request their support for the passage of the Arthritis Act.  

************************************************************************************

I was so thrilled to be in DC last week at such a monumental time.  There is a link at the right to input your zip code and to write your Senators.  We can get this passed! 

Mourning the life I had...

Sometimes when my RA is really flaring, or if I have to miss an important social function, I mourn the way I used to be before this disease changed my life.  I used to be a very active person, more spontaneous, hard-working, and went out and socialized so much more than I do now.  I used to love cooking but now it's more painful than enjoyable.  I had started bike riding as a hobby not long before I was diagnosed and can no longer pursue that.  I miss many family functions, activities with friends, parties, faires, outdoor activities, and so much more...

I've lost friends because of this disease.  They just don't understand what it's like to live with so much pain and the struggle to maintain some semblance of a normal life.  I don't blame them.  Who wants to hang out with someone that cancels at the last minute, or can't do many of the activities they enjoy?  I lose touch with family members also, because they just don't get it.  Part of it is my fault.  I've withdrawn from many things because I'm tired of disappointing people when I'm unable to do things.  It's easier being in pain alone sometimes...

Yes, I mourn the life I once had, but I am trying to embrace the life I've been given.  I am turning my energy towards awareness, and advocacy of Rheumatoid Arthritis.  I am a kinder and more empathetic person.  I have met some of the bravest and most wonderful people because of this crappy disease!  I believe finding friends or some sort of support system that understands the many factors involved with RA, is imperative to our health and happiness.  One great group of people I have found, are the people involved with Arthritis Introspective.  They have a yearly gathering for fun, education, sharing and just plain enjoying yourself!  Here's a link to their site:   

http://www.arthritisintrospective.org/ 

They are truly a great group of people.  My first gathering was in April of this year, and I am so ready for the next one!

"Twenty years from now you will be more disappointed by the things that you didn't do than by the ones you did do. So throw off the bowlines. Sail away from the safe harbor. Catch the trade winds in your sails. Explore. Dream. Discover." ...-- Mark Twain

So get out there, gain a new perspective on life, and be the best you ever! 

I took this picture while in NYC last week.  I took it while on the Staten Island Ferry...

New Rheumy at last!

Today was my appointment with my new Rheumatologist.  It's been 2 years since I've had any sort of treatment plan for my RA.  I think I'm going to like this doctor!  He was extremely thorough, explaining everything, listened attentively to my questions, comments, and symptoms.

The bad news is that he told me that my RA looks like a very aggressive form and I already have irreversible damage to my hands and feet.  We'll know more how bad the damage is after my x-rays.  Right now, he put me on Arava and is continuing my prednisone until we check with the insurance company to see which biologic will be approved.  I also got a cortizone injection in my left knee.  First time in the knee, didn't hurt at all.  I've had them in my shoulder, where I swear they jam that needle right into my bone!  He wants me to start on a new drug that just came out this year, called Actemra.  He said that since the TNF blocker biologics haven't worked so far, that Cimzia and Simponi probably won't help me either since they work in the same fashion.  This new drug is another kind of cell blocker...

Anyway, I am hopeful that I'll get on something that will help!  I'm worried about the joint damage though...  This disease gets no respect and is not fun!!

Wish me luck that the insurance will cover this new drug.

Here's the link for information on Actemra:  http://www.actemra.com/

Capitol Hill: no pain, no gain!

Okay folks, this post will be a short one.  I am exhausted this evening.

Awoke at 5am to get ready for our Capitol Hill visits with Senator Cornyn and some respresentatives from Texas, including my representative Michael McCaul.  When they told us that there would be a lot of walking, they were not kidding!  My feet are hating me and I am hating them right now...

We met with Senator Cornyn first for a photo op and had a few minutes to speak about our issues.  He is a very pleasant man, and did seem to listen to each of us.  Our next visit was with Emily Dillard.  She is John Cornyn's legislative aide.  A very nice woman that truly listened to and was familiar with our issues.  She invited us to the conference room and we each had a chance to speak.  This was at the Hart building...

We were then off to the Cannon Building to go to Michael McCaul's office.  We were able to speak to his legislative aide, Laura Bunten.  She was not quite as interactive or knowledgeable about our issues, but she was very nice.  (she looked about 19 years old!)

About this time it was a little after 11am and we had time to go have lunch.  They have a fantastic cafeteria in the house building!  I was able to get a delicious salad from the salad bar.  Then we hit up the gift shop.  I picked up a few souvenirs.  (Sherry, I got you a Democratic donkey pin!)  I was tempted to get dad a Democratic tie with donkeys on it!  LMAO!!

Finally we had an appointment at Representative Jeb Hensarling's office.  We again met with the legislative assistant, and his name was Kyle Jackson.  We each took our turns speaking about our concerns and issues.  I felt I spoke a bit better by this time.

I am a very nervous person speaking in front of people.  Anxiety seems to set in on me and my mind goes haywire!  I was nervous about this, but I did speak and tried to explain a bit of my story.  Being a person with Rheumatoid Arthritis and being a Medicare patient is very important to what is going on in congress.  Many specialists such as rheumatologists may quit seeing Medicare patients because their compensation has been cut, and billing codes abolished.  This is going to limit access to relevant care for people like myself.

I felt a bit out of place as this was my first experience doing this.  I would love to do it again next year and be more prepared, practice what I want to speak about, and kick some butt on Capitol Hill!

I'm posting a couple of pics for ya'll to take a gander!

Both Texas teams with Senator John Cornyn.  I'm in the grey suit!

Me in front of the Capitol building.

We walked by the Library of Congress...

 That's all for now.  I am in a lot of pain right now.  My knees, feet, shoulders, and just about everywhere in between...  I have to say though, it was all worth it!  I'll post more later after I've had some rest!!

Time for advocacy and fun!

This weekend I am preparing for my trip to Washington D.C., and New York.  I am traveling to D.C. to take part in the American College of Rheumatology's Capitol Hill fly-in.  I am on the Texas team, and my team consists of two rheumatologists and two patient advocates.  We are going to be meeting with members of congress to discuss issues with rheumatoid arthritis.  I got my briefing details yesterday and the following subjects will be discussed:

H.R. 1210 The Arthritis Prevention, Control, and Cure Act

Support arthritis and rheumatic disease research, increase research funding

Restore Medicare coverage of consultation service codes

These are all very important issues.  I am getting excited and quite nervous about this trip!  I am excited to be a part of this process and to hopefully have my voice heard.  I am excited to meet new people and hopefully make new friends!  I am nervous about going on this trip on my own.  The concerns of traveling with RA.  The amount of walking involved.   I am very nervous about public speaking but I want to conquer this fear.  I am determined to be more active in advocacy and volunteering.  I want to help in any way that I can...

I'm pretty sure I have everything for my trip, from new underwear to a new business binder to keep my paperwork together.  You gotta have new underwear in case your bag gets inspected!  Haha!   I've printed out my itinerary, hotel reservations, airline confirmation, and notes.  Now I just have to fit everything I'm taking into one carry-on bag.  If you know me, that is going to be the most difficult thing of all!  I'm a notorious over-packer.  I will accomplish this!!

All in all, this trip is going to be an adventure.  After going to D.C., I am heading over to New York City for a bit of sight-seeing and enjoyment.  After that, I'll be visiting one of my friends that lives north of the city.  She also has RA and is a caring, creative, and wonderful person.  A fellow photog as well!  So, I'll have plenty of pictures to share.

Wish me luck!

Stress!

I truly believe that stress is a major trigger for RA flares.  I have my issues with stress.  It always seems that there are so many things to worry about!  I worry about my health, money, my future, what people think of me, everyday life, my family, political issues, etc.  I am always looking for ways to make my life more peaceful and more meaningful.  I friend of mine passed on this website to me, and I think it is amazing and would like to share it with others.  It offers life guidance and tips.  A wonderful source of information. So check it out and make your life and others a little happier!  

http://blog.givemore.com/be-no-ego/ 

Starting Over

My life with Rheumatoid Arthritis has definitely been a journey in and of itself.  It has changed me in many ways. I hate this disease with all of my being, but in certain ways it has been a gift.

Right now, I am being forced to move out of the house I have been living in for the last four years.  I have to be out in a short period  of time also. Basically within a month.  This has come totally out of left field and I was totally unprepared.  I have chosen to look at this situation in a positive light.  Living here has drained the life and energy out of me for far too long.  My self-esteem has suffered and I've also felt worthless and depressed living with this person.  He never understood or cared to understand my illness.  I in return took for granted having a roof over my head, and I never should have done that.  Things may be rough for a while but I am going to make it!  A relationship has ended, but my life is beginning.

I am starting this blog to share my journeys with RA.  These journeys will be emotional, spiritual, adventurous, along with daily struggles and accomplishments.  I am starting my life anew.  I don't want to be stagnant any longer.  I am becoming more involved in advocacy for issues close to my heart.  I'm tired of fear holding me back from being a better and more complete person!  This has truly been a wake up call to get on with my life...