Arthritis Walk 2010

May is National Arthritis Awareness Month.  Strap on your walking shoes and join Team Vicbo at the Detroit Zoo for free when you participate in the Arthritis Walk.

http://angelsforarthritis.blogspot.com/2010/04/arthritis-walk-2010.html

My JRA story

My Story
By: Victoria Nicholls (Vicki)

I was born to Sharon and James Hall in 1973. At about 14 months they noticed I would turn my whole body instead of my neck. Also, I would walk funny, I wasn’t moving my hips, kind of like a robot. They took me to a regular pediatrician who then referred my case to University of Michigan. Then at 18 months my diagnosis of Juvenile Rheumatoid Arthritis shocked my parents. My older sister had to have open heart surgery as an infant, now their second child was born with a systemic degenerative disease that would someday cripple her. I can now look back and put myself in their shoes. There was no treatment for JRA, just baby aspirin. The doctors told my parents I had to take 17 baby aspirin a day (at 2 years old!). Or, they had the choice of making me a pharmaceutical ginuea pig. I think they chose the right route. My parents had to exercise my legs by forcing my hips to stretch out as I laid there whimpering like a puppy taken from its’ mother. This had a great affect on them emotionally, physically and spiritually. I was not the only one affected by this disease. My immediate family was affected more than I ever knew.
At age 3 I started dance class. This was the best thing my parents could have ever done for me. I danced from age 3 to 16 Anita’s School of Dance in Sterling Heights. Thanks Anita for everything you taught me. It greatly helped my JRA and it gave me confidence and pride in myself. I would encourage any parent to enroll their child in some sort of dancing activity because of the stretching of the limbs that is required during warm up routines (upon doctor approval, of course).
During school I fought extreme discrimination. Everyone knew there was something wrong with me but I didn’t want anyone to know, so I denied having anything wrong with me. I was ashamed of my disease. The kids would whisper behind my back and say hurtful things. In first grade, I was disciplined in a school assembly because I was not sitting flat and Indian style. I could not physically sit like that. The teacher pulled me aside and I told her I have arthritis and I can’t sit like that. She called me a liar, because kids don’t get arthritis. My parents had to write her a note confirming my devious lie to not sit Indian Style was in fact true. I did have JRA. I never got an apology from the teacher. You know who you are.

I am no longer ashamed of my disease and am ready for my voice to be heard. There are hundreds of thousands of people like me. Check out Gina’s Blog she is actually the reason I started getting interested in speaking out for people with arthritis, especially the children.
At age 18, my graduation present to myself was new toes. I had all 10 toes reconstructed (5 at a time). This was the first time I could see my feet as semi-normal as opposed to the chicken claws I lived with all my childhood. My disease started progressing faster at about age 23. I started having extreme pains in my hips. I ended up with a bi-lateral hip replacement at age 27.
All through this I managed to put myself through school. I graduated from Oakland University with a major in accounting in 1997 and became a Certified Public Accountant. I was determined to have a career. My disease had other ideas. I had to go on disability in 2004 after being diagnosed with Microscopic Colitis. Then my JRA went through the roof and my body has been getting worse ever since. I had a good 2 year period on Remicade but it stopped working and I have been on the search for a medication that I haven’t tried yet and can afford.
The financial stress is unbelievable with all the hospital bills, doctor bills, blood work bills, co-pays for prescriptions. Now, Medicare part D exists ,thank God, but for people like me who need the expensive high-tech drugs they don’t pay for because of the “donut hole”. Everyone needs to contact their US Representative and Senator and say “close the donut hole in Medicare part D”.
I would go so far to say that the law is discriminatory towards the disabled. Permanently disabled people are usually on really expensive medication, that because of the donut hole, they cannot afford their medication. The “donut hole” is killing people because they can’t afford their medication. I have heard plenty of horror stories to back this up.
In 2006, I somehow started to think drinking the pain away was a good idea (even though alcoholism runs in my family tree). By February 2007 I was in the fatal stages of Alcoholism. I went into treatment and it has changed my life. I have learned self respect, humility and that I am not in control of everything. I can control one thing. I will speak out for arthritis causes every chance I can. I have found my voice, please hear me. I am not alone, there are hundreds of thousands of me’s out there. You can find your voice, too. This disease will never break my spirit. I am not my body, I am my spirit. Life is not about the wealth in your bank account, but the strength and goodness of your spirit.

Video of Vicki Nicholls (Hall) on Fox 2 News (Detroit, MI)

As many of you know, I was diagnosed with Juvenile Rheumatoid Arthritis at the age of 18 months old. I let this disease control me after I was forced to go on permanent disability at age 30. For the first 3 years I was suffered from severe depression and had several mental breakdowns. I began to self-medicate. Then in 2007 a miracle happened. I got sober. I say a miracle because I was trying to drink the pain away. Obviously, this did not work. My Alcoholism (recognized as a disease by the AMA since 1950) became severe in 2006 until I entered recovery. Since then I decided to devote most of my time volunteering for the Arthritis Foundation as a patient advocate and an Ambassador to the Arthritis Foundation (for the 10th Congressional District). I have a different view of life now (after several near death experiences). I am grateful for everything I have. I am also committed to finding a cure for Rheumatoid Arthritis in my lifetime!

2009 has been an unbelievable year of blessings. It all started in May with Matt December of the local Source Newspaper requesting to do a story on me and my fight for a cure for Arthritis. Then, in July, I was invited to a private meeting (with 8 other community volunteers) with President Obama. It didn't stop there. In August, I was asked to write my first story for the Juvenile Arthritis Newsletter. This was my first time being published! Then, last week I did a local Fox 2 Detroit news story for Deena Centofani's HealthWorks series. They are sponsoring this year's Arthritis Foundation's Jingle Bell Run/Walk. So I guess you could say 2009 was a great year for the advocacy work I do. I am so grateful for all these blessings. I thank God everyday for these opportunities that have been offered to me. I wanted to share the local news story with everyone so I have a link below to view it. It's less than 2 minutes.

I also wanted to ask that if you are financially able to give a small donation to Team Vicbo in my first Arthritis Foundation's Jingle Bell Run/Walk this Saturday at the Covington School in Bloomfield Hills I would greatly appreciate it. The Arthritis Foundation is one of the largest non-profits in the country and is a 501(c)(3) organization. All donations are tax deductible. If not (which I completely understand with this horrible economy), can you forward this e-mail to 10 people? There will be lots of prizes for best holiday themed costume and age group prizes for the best times. This is an extremely kid friendly event since 300,000 children in the USA have Juvenile Arthritis. 10,300 children in Michigan alone. Proceeds from this event fund the Annual Camp Dakota in Lapeer, Michigan where children with Arthritis make lifelong friendships, and learn activities they normally cannot participate in. I am going to volunteer for next year's camp.

link to donate or join Team Vicbo

http://www.kintera.org/faf/donorReg/donorPledge.asp?ievent=315390&lis=1&supid=211640501

link to Fox 2 News Story:

http://www.myfoxdetroit.com/dpp/health/Woman_Has_Fought_Arthritis_since_Youth

Happy Holidays!

Sincerely,

Vicki Nicholls

vicbonicholls@gmail.com

blog: http://vicbosblog.blogspot.com/

Twitter: @teamvicbo

Facebook: Vicki Nicholls

Jingle Bell Run 2009

The time has come for everyone to put bells on their toes and join in the fun at the 2009 Jingle Bell Run. My team is Team Vicbo at the Jingle Bell Run on December 12, 2009 in Bloomfield, Michigan. This will be my first time for this event. I have participated in the Annual Arthritis Walks in May. I know we will have a huge turnout this year. Here's the link to my page www.kintera.org/faf/donorReg/donorPledge.asp?ievent=315390&lis=1&supid=211640501

Affordable Biologics

I just read about this today. We need to get an amendment in the Senate Health Bill to address the costs of biologic drugs (used for cancer, AIDS, Rheumatoid Arthritis, etc.). I am on Enbrel and the co-pay has gone from $50 to $435 per month in just 2 short years. See my posting below "Genocide in America". Please sign this petition to get this amendment added so the severely ill do not have to choose between groceries and medication they need to stay ALIVE!

http://publicoptionplease.com/biologics/petition/

Link between Arthritis and Heart Disease

How does having Rheumatoid Arthritis affect your chance of developing heart disease? Having Rheumatoid Arthritis is in itself a risk factor for heart disease, just as is diabetes and obesity. What can you do to reduce your risk?

http://www.arthritis.org/heart-disease-connection.php

Arthritis and H1N1

This is a great resource for any question related to how having Arthritis affects your chances and the severity of H1N1.

http://www.arthritis.org/arthritis-and-h1n1.php?WT.ac=flu_disease

California awards stem cell grants (via Rudy Sims)

This is awesome news. No mention of Rheumatoid Arthritis in this article but I know we are close. I predict my disease will be curable in 5-10 years with stem cell research. I literally can't wait!

http://www.disabilityresourcelinks.com/main/2009/10/stem-cell-agency-awards-230-million-in-grants.html

Arthritits Foundation Bone Bash 2009

I would like to thank all the ghouls and goblins who made the Arthritis Foundation's Bone Bash 2009 a great success. We had a blast with the Thriller Dance off. That 80's Band and the Michael Jackson impersonator were awesome! Looking forward to next year!

Arthritis Summit 2010

Can't wait for my first Advocacy Summit in Washington D.C. March 1-3, 2010

http://www.arthritis.org/advocacy-summit.php

Bone Bash 2009

I just got my tickets for the Bone Bash 2009! More info at http://www.arthritis.org/bonebash.php

The Day I Met President Obama

The phone rang on a Friday night. The gentleman on the other end said "I have the opportunity of a lifetime for you." My instinct told me right away I was being invited to meet the President, but my mind said, "No Way!" President Obama was scheduled to come to speak at Macomb Community College the following Tuesday and I had been sending out e-mails to contacts to try to get tickets. The man on the phone said I was going to get a private meeting with the President of the United States of America. I almost fainted. My heart was beating a million miles a minute. I knew he was serious when he said you have 10 minutes to get me an e-mail with your info for the secret service to do a background check. I sent the e-mail in 5 minutes!

I was diagnosed with JRA at 18 months old. I am now 35 and on total disability. I graduated from Oakland University and became a CPA. My career was cut short due to a 3 year bout of Colitis and my JRA is not in control because the co-pay for the drug I need is $435 per month. That is why I became involved in the health care debate in Congress. I attended numerous rallies and visited Senator Levin's office in June. I told my story to anyone who would listen and started a blog to share my story with others. I give free advice and support at http://vicbosblog.blogspot.com/ . I'm not sure how exactly I was selected but I did meet some pretty important people at these health care rallies and I also volunteered during the 2008 campaign season to share my story with my community.

On July 14, 2009, my chance had arrived. I was instructed to meet my contact at the front of the line at Macomb Community College. We had a group of 8 community volunteers who were also invited. After waiting for hours, we got the signal from the secret service to follow them. We were escorted through what seemed like a maze of people, then a maze of hallways lined with black cloth drapes. We were put in a room that had been cleared out and the infamous black cloth drapes blocked the back half of the room that was full of chairs and tables stacked to the ceiling. The secret service agent asked if we had anything to give to the President. I gave him a copy of the Arthritis Foundation's Principles on healthcare reform and an article about my story that was in the local newspaper. After another short wait, we heard his voice in the hallway. We all had the same look on our face and no one talked. He entered the room and we all lit up with smiles. We all got our photos taken by the white house photographer, a handshake and an introduction. I told the President my name, and how honored I was to meet him. He responded "It's very nice to meet you, too." We all took our photos and he spoke to all of us of how important our volunteer work is to the healthcare reform debate. He was very grateful for all our hard work. "The fight's not over yet, we need to keep spreading the message of health care reform. Keep up the good work," he said. I exclaimed, "You can count on us Mr. President!" Then he left the room and went straight out onto the stage to give his speech.

This was a day I will never forget! Thank you Arthritis Foundation for giving me the opportunity to help others with this disease. We may have a disease but it doesn't have to have us!

My health care nightmare!

My name is Vicki Nicholls. I was born with Juvenile Rheumatoid Arthritis. I have lived through many physical and mental struggles because of this disease. I am now 35 and permanently disabled. I did well in school and became a CPA (certified public accountant). At the age of 27, I needed to have a bi-lateral hip replacement. I tried to keep working until my body succumbed to the inevitable result of this crippling disease stopping me from working. This disease is now attacking not only my joints, but my muscles, ligaments, bones and organs. Most Rheumatoid Arthritis patients are disabled within 10 years of their diagnosis. 2.1 million people have this disease in the US.

Rheumatoid Arhtritis patients have been increasingly discriminated against by private insurance companies. Many insurance policies have a waiver that Rheumatoid Arthritis treatments are not covered. I am now on Medicare and do not worry about being discriminated against because it is a government plan. The part D of Medicare, however, is actually a private component. I use Blue Cross Advantage for part D. All part D policies have a "donut hole" which means after they spend $2,300 on prescriptions they stop covering the patient until they reach $4,100 in prescription costs. So now, I have no drug coverage for brand name drugs. I am in the donut hole. All of the new Rheumatoid Arthritis drugs cost from $1,000 - $3,000 per month. This is not affordable for people who rely on disability income to survive. My disease is progressing faster and I am in need of treatment immediately. This is health care in America.

Without Health Care Reform I will soon need nursing care. This will cost the taxpayers much more than if my medication was covered. Without treatment, many surgeries are soon to come. I already need both my knees operated on as a direct result of me not being able to get the treatment I so desperately need. I live in extreme pain and exhaustion due to not having my treatments. This is my last hope. There are treatments. They are not available, however, for the disabled that need them.

My fellow Americans, please understand health care is a right, not a privilege.

Article about my fight for a cure!

Here is a link to a local newspaper article about my fight to find a cure for Rheumatoid Arthritis.

http://sourcenewspapers.com/stories/062109/loc_story1001.shtml

Arthritis Prevention Control and Cure Act of 2009

Attention all Arthritis Sufferers:

Do you have Arthritis? 46 million Americans have one or more forms of the 100 different forms of Arthritis. I know. I am just one. I was born with Juvenile Rheumatoid Arthritis 35 years ago. I have suffered tremendously at the hands of this progressive, incurable disease. It is now time for me to put up my dukes and fight. Not just for me, for all the patients who are too disabled to fight for themselves. I have endured 35 years of discrimination from many sources: students, teachers, family, friends but most of all strangers staring. No one quite knows how to react when they hear my story. That's why I'm gonna keep on tellin' it. I want people to stop looking at me like I'm joking or I'm flat out lying, when I say "I was born with Arthritis". This is not an old person's disease. 300,000 children in the US has one form or another of Juvenile Arhtritis. We need not be ashamed. It is not our fault. No one is to blame. There, no more blaming.

How do we fix this problem? First things first, pass the Arthritis, Prevention, Control and Cure Act of 2009 (S984). This is a must! Please follow this link and READ THE BILL! http://thomas.loc.gov/cgi-bin/query/z?c111:S.984: Then, call your Senators to co-sponsor this bill. We almost had it passed last year but the economy fell apart. If you need any information on arthrits the best place to start is www.arthritis.org This is the website to the Arthritis Foundation. They are there to help us. They have given me a new lease on life and I will always be grateful to them for showing me I can make a difference. If I can do it, you can do it to! Peace and Blessings, Vicki

Questions about arthritis? Just ask.

Please feel free to let me know what YOU want to see on my blog.  This blog is for YOU! I promise if I don't know the answer to your question, I can and will point you in the right direction :)

Join the fight to cure Rheumatoid Arthritis!

May is Arthritis Awareness Month.  I just did the 2009 Arthritis Walk.  It was a great time.  We need everyone's support who knows someone who suffers from the 100 different forms of Arthritis.  Please visit my donation page for more information on my fight for a cure.  http://www.miaw09grossepointe.kintera.org/vickinicholls