Rheumatoid Arthritis - What is it?

I've been doing some research on this illness that I have a special interest in, as it is all over my family. I planned to research and write my own summary, but The Arthritis Foundation has done a great job already, so I'll just share their stuff here, with thanks to them!

Rheumatoid arthritis (rue-ma-TOYD arth-write-tis) is a chronic disease, mainly characterized by inflammation of the lining, or synovium, of the joints. It can lead to long-term joint damage, resulting in chronic pain, loss of function and disability.

Rheumatoid arthritis (RA) progresses in three stages. The first stage is the swelling of the synovial lining, causing pain, warmth, stiffness, redness and swelling around the joint. Second is the rapid division and growth of cells, or pannus, which causes the synovium to thicken. In the third stage, the inflamed cells release enzymes that may digest bone and cartilage, often causing the involved joint to lose its shape and alignment, more pain, and loss of movement.

Because it is a chronic disease, RA continues indefinitely and may not go away. Frequent flares in disease activity can occur. RA is a systemic disease, which means it can affect other organs in the body. Early diagnosis and treatment of RA is critical if you want to continue living a productive lifestyle. Studies have shown that early aggressive treatment of RA can limit joint damage, which in turn limits loss of movement, decreased ability to work, higher medical costs and potential surgery.

RA affects 1.3 million Americans. Currently, the cause of RA is unknown, although there are several theories. And while there is no cure, it is easier than ever to control RA through the use of new drugs, exercise, joint protection techniques and self-management techniques. While there is no good time to have rheumatoid arthritis, advancements in research and drug development mean that more people with RA are living happier, healthier and more fulfilling lives.

Healthy choices

Just wanted to share a great resource...
My mom uses, and recently has become an affiliate in sharing, high quality supplements from a company called TriVita. (www.trivita.com/12953740 ) This company not only sells great products, but they have a huge library of resources and articles about health and nutrition. They provide great tools for helping your body to work at its best. Check it out... :)

Aching for Compassion

I read a really good article titled "Aching for Compassion" in a Focus on the Family magazine the other day. It was all about chronic pain, and those of us who have to deal with it. It offered six tips that I thought were really important to share. They are tips for the people who care about and interact with those who do have chronic pain.

1. Listen with empathy. Accept what they say.
2. Speak with compassion. Affirm that the pain is real.
3. Pray together.
4. Do something. Offer to do something specific.
5. Accept limitations. Include them in activities, but understand if they need to bow out.
6. Laugh and celebrate. Celebrate your friend.

Good stuff. When life is going well, and you don't have to deal with this kind of stuff on a daily basis, you can forget about those who do. Good reminders :).

D.O.O.R.

Did you know that there are 25-40 million people who are deaf around the world?

I found out about a new ministry today that I had never heard of before - D.O.O.R. (Deaf Opportunity Outreach). They help to train and develop teachers, leaders, and evangelists to the deaf community. They have trained missionaries to the deaf in 49 different countries. Pretty cool... (doorinternational.com)

Held

A great reminder that troubles don't mean that God is absent, rather He is there with us, holding us....

Why don't we?

This is the first harvest from our garden: a slightly green, not quite done growing, undersized tomato. Yet, when we picked it we celebrated!! My kiddos and I were thrilled that finally, after weeks of waiting, our tomato plant had born fruit!! It wasn't quite as big and plump, red and juicy, as we had pictured, but we celebrated. The kids told everyone, we took a picture, and we gave it a prominent seat on the kitchen window ledge to finish ripening.

Why do we do any less with people? Why do we cast aside those less than just as we picture they should be, less than close to perfect? We don't do it like in years past, in an institution where no one sees them, but still, many of us do it. We avoid all eye contact. We place ourselves in situations where we don't have to interact with "those kinds of people." We create our own little world where green tomatoes and "different" people don't exist.

We are each one different. We need to celebrate the way we each were made. Why don't we?

Sir Isaac Newton

I was reading an article about Sir Isaac Newton yesterday, you know, the guy with the apple and gravity and all :). This man was amazing, tons of discoveries to his credit, and all sorts of other achievements as well. He was ahead of his time in science and mathematics, and was knighted for achievements in currency reform. Years later, many historians believe that Sir Isaac Newton had Asperberger syndrome, a condition on the autistic spectrum. Amazing. He didn't exactly let the challenges that were dealt to him slow him down, but maximized the strengths they also brought. Good stuff.

Paralympics

I heard someone talking about the Paralympics the other day and I realized that I really didn't know much about this contest. I had the vague understanding that it was something like the Olympic games, but for disabled individuals, but nothing more than that. Soooo, I decided to do some research...

The Paralympics have existed in some form since 1948, originally designed for injured veterans' participation, but have run along with the regular Olympic games since 1988, sharing the same host city and facilities, but a few weeks later.

The Paralympics are designed for individuals with a variety of disabilities, including amputees; those with cerebral palsy, traumatic brain injury, stroke or similar disabilities affecting muscle control, balance or coordination; athletes with spinal cord injuries and other disabilities which require them to compete in a wheelchair; those who are visually impaired; and also people with a few other physical disabilities like dwarfish, MS, and congenital deformities, that don't fit into the previous categories. Previously individuals with intellectual disabilities were also included, but due to some cheating in this category, this category is currently suspended.

The Special Olympics are sometimes confused with the Paralympics, but they are designed for individuals with intellectual disabilities.

The Paralympics, like the Olympics, consist of many many events, and require serious training to participate. Unfortunately, as of yet, the Paralympics don't have the press coverage and name recognition of the Olympics, or probably of the Special Olympics, but a medal winner, or even a participant in these contests, is a serious athlete who deserves serious recognition.

Inability

I found this slogan on the Special Olympics website.
Be a fan of empowerment. "Disability doesn't mean inability."

I like it. We all come into this life with challenges, some bigger than others. We accumulate more along the way. Our life may be hard, but we are able to suceed, each in our own way.

Cool picture, and reminder, hmm?

Homeschooling

There has been a back and forth battle over special services in New York for homeschooled kiddos over the last few years. This letter was just sent out by the president of LEAH (Loving Education at Home, a large statewide homeschool support group) to its members. It is a huge victory for homeschoolers, and will hopefully help parents to do the very best in meeting the needs of their children with disabilities.

Dear Friends of New York Homeschooling:
I have great pleasure to inform you that on July 7, 2008, New York Governor David Paterson signed A11463, the bill which restores special services to disabled homeschool children. This is the final step in making this bill a law in the state of New York. Disabled homeschool children in New York are once again eligible to receive critically needed special services, on the same basis as other students in New York,
As you may know, these services were abruptly terminated by the State Education Department (SED) earlier this year, changing a policy of more than 17 years of providing these services to homeschoolers. This action was in response to the outcome of a particular NY judicial case (which cited a legal technicality in Federal law). As a result of that change, parents, instead of homeschooling, would have had to enroll their children in a public or private school to receive services critical to learning and development.
However, as a result of calls, letters, emails, and prayers from New Yorkers like you, we were able to persuade the Board of Regents and the SED to see the folly of this new policy and to convince them to support legislation to restore service. More calls, letters, emails, and prayers brought about necessary changes when early legislative proposals were judged to be defective. And even more calls, letters, emails, and prayers generated support within the Legislature which paved the way for this bill to be passed. And I believe it was prayer that caused the final version of the law, which is now signed, sealed, and delivered, to be even slightly better than the version homeschoolers were actively trying to push through the legislature.
In addition to giving praise and thanks to God for his gracious providence in this matter, I suggest that you consider dropping a note of thanks to any government official (SED, Regent, Legislator) that you may have contacted in support of this effort. Listed below are some of the key legislators involved:
1) The following is a suggested message which you may put into your own words:
"Thank you for acting quickly and passing Assembly Bill 11463. This bill will allow homeschool students with disabilities to be eligible for special education services as other nonpublic school students are."
Assemblyman Michael Benedetto (Sponsor)
Email: benedem@assembly.state.ny.us
Assemblywoman Catherine Nolan (Co-Sponsor)
Email: nolanc@assembly.state.ny.us
Assemblywoman Donna Lupardo (Co-Sponsor)
Email: lupardod@assembly.state.ny.us
Assemblyman Steve Englebright (Co-Sponsor)
Email: engles@assembly.state.ny.us
Assembly Speaker Sheldon Silver
Email: speaker@assembly.state.ny.us
Senator George Winner (Sponsor)
Email: winner@senate.state.ny.us
Senator Dale Volker (Co-Sponsor)
Email: volker@senate.state.ny.us
Senator Joseph Bruno- President pro tempore
Email: bruno@senate.state.ny.us
2) Please contact both your state senator and assemblyman and give them this message in your own words:
"As a constituent, I want to thank you for voting in favor of Assembly Bill 11463. This bill will allow homeschool students with disabilities to be eligible for special education services as other nonpublic school students are."
To get the name and contact information for your state senator or Assemblyman, go to http://www.hslda.org/toolbox
Please be in prayer as the State Education Department defines how the new law will be implemented on a practical basis, and sends guidance to the local school districts in regards to details and procedures. The Special Needs Task Force and the Home School Legal Defense Association are already in communication with the SED in regards to a number of practical issues. How these issues are worked out can significantly impact the degree of ease or difficulty of working with this new law.
SPECIAL NOTICE
If you have disabled homeschooled children that need to receive special services under the provisions of this new law, please note that the signing of this bill sets into motion a 30-day window in which you need to make a written request to your school district for such services. The details and the procedures of this are still to be worked out – please go to www.piccnys.com for the latest information on this. It will be posted as soon as it becomes available.
Thank you very your participation in helping protect and maintain homeschooling rights in New York,
Rich Stauter
President, NYS Loving Education At Home (LEAH)

Wheels for the world

I love opportunities to save money and reuse things, and this is a great program that does both. It's a program that takes the used wheelchairs that we Americans have piled up, refurbishes them, and gets them to folks that need them around the world. Very cool....

Reaching the stars

A neat story I came across about someone working in the field of astronomy who happens to be legally blind. It's a sidenote of who she is, not the defining feature. Very cool.

Transitions

My younger daughter has never really been "diagnosed" with anything, well, except when we moved a few years back. The doctor slapped a Post Traumatic Stress Disorder label on her chart then... We talked about OCD at the time, as she handled her stress about moving with going a little germphobic, washing hands and cleaning things compulsively. As she adjusted the obsessions subsided, thankfully. But transitions have always been hard for her. She likes things to be predictable. She likes the same, the same, the same. We were just on vacation for a week, and the first two days were hard - meltdowns and tears. The rest of the week was good - she had fun. As we prepared to leave -meltdown city again. As she's gotten older the transition meltdowns have become a little more manageable, not as all encompassing, but I still feel bad that I can't seem to help her head them off. Ideas?

Transportation

I had a long chat today with a old friend of my husband's. She is a single mom of two young kiddos, and needs to use a wheelchair to get around in recent years. She was just sharing a bit about some of the frustrations she's had in the area of transportation, and in people not understanding the difficulties with it. Just very recently she acquired an adaptive van with a lift, but before that she was dependant on public transportation, which in her area requires 24 hour advance notice for use of the accessible public transportation. I can't even imagine always having to know at least a day in advance when I'd need to go somewhere, especially with kids!! She shared a story about a time when she needed to get to her daughter's school quickly, and just how challenging that was, and how difficult it was to get school staff to understand the hoops that needed to be jumped through. Anyway, just throwing it out there - any stories about transportation issues? Any ideas on solutions?

A good path

An article that I just wanted to put out there....

“I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland.""Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.”

I first heard this piece by Emily Perl Kingsley when I was going through an orientation at my first job working with people with disabilities. The social worker read it to us, and it grabbed my attention. I was just looking for a summer job between my junior and senior years of college, and the spot in a group home would fit my schedule well. I really had not thought about it much more than that. But this, well, it made it real.I worked that summer in the group home where nine adults with developmental disabilities lived, and it became more real. I got to know the people behind the diagnoses, beyond the files I had read. I got to “travel in Holland” and see things through the eyes of those who had lived their whole lives in this very different place.

After I graduated from college I came back to the group home, and I worked with the folks there for several years. I eventually got promoted up and left the home, working in coordinating services for individuals living out in the community, but I kept in contact with the residents back at the house for a few more years. One of the men, George, took pictures for me at our wedding, rigged up with a camera operated by his pushing a button with his foot. One of the ladies, Susan, was the one to catch my bouquet; it flew right into her lap as she sat in her wheelchair. I worked in service coordination for a few years, and became familiar with a lot of different disabilities that I had never heard of before. I became connected to a lot of people, those disabled and their supports, that I probably never would have met without that job. I had a degree in Psychology, but most of my learning happened after school ended.

I have traveled an interesting and varied path since I left that job. In the Service Coordinator position I had come across a huge need for appropriate and accepting child care for kids with disabilities. I took coursework to become a licensed childcare provider, and opened up a small day care in my home. I planned to focus on providing individualized care, especially for children with disabilities, and sent flyers out to all of the local agencies. Nothing. My day care did get up and running, but it was filled with plain old, “regular” children. I was disappointed, but again was educated by the experiences in my life. I learned that rather than viewing disabilities as a cut and dry line that some children fell into and others did not, we all live on a continuum of sorts.

We all struggle with with our own set of difficulties, some of which can be easily spotted and identified as disabilities with names such as Down Syndrome, autism, and ADHD, and some which a professional will never categorize or label. We all have strengths and we all have weaknesses.I am now a homeschooling mom, with two daughters who have stretched, and rewarded, me in ways I never could have imagined before parenthood. As I help them to learn their schoolwork, we also learn together how to live our lives. We learn together how to take the strengths and weaknesses, the abilities and disabilities, that we have been given, and to do our best with them.We have recently added a foster child into our family, and he has helped us to see how each and every person has so much to offer, regardless of what labels have been applied to them. He has helped us to realize firsthand that even when the journey of life takes us down an entirely path than we had planned, it can be an amazingly wonderful path. Even when the path is not easy, it can be good.

Disabilities

I make no pretense of being an expert about disabilities. I have a handicapped parking pass for my van, but that doesn't mean anything to me except that on days when I'm really really wiped out, I have the good fortune to not have to walk so far. I go to the doctor a little more often than some, but not as often as others. I studied Psychology and Sociology in school, and we talked about disabilities, but I certainly didn't learn it all. I've worked with folks with developmental and physical disabilities for a few years in the past, but I've only brushed the tip of the iceberg, I know. I only want to create a place to talk things through, to have a forum of sorts, to share successes and struggles. So that's my idea with this blog. Please talk back. Tell me if I'm helping, annoying, or