Tuesday, September 11, 2012

How far we've come



Today marks the first birthday of my support group Squeaky Joints. When the group was started, Peggy (my co-founder) and I never dreamed what would come of this group. Our vision was to have a place where the few friends we had made on Facebook, with RA, could get to know each other more. I remember when we got to 50 members, some being loved ones that wanted to understand more, we were excited. I remember being proud that we had support for ourselves and the friends we had made. I had no idea what was in store for us.

As we watched in amazement the group grew. Members added each week. A few months in we had 200 members! Quickly people started calling themselves Squeakers. They referred to the group as Squeakerville. In the group there was talk of getting shirts and awareness bracelets. Peggy and I soon sprang into action. We consulted with a local artist and created a logo and filed for a trademark. It reflected our personalities perfectly. We designed awareness bracelets of purple (autoimmune) and blue (arthritis). We weren't in it to make a profit. We just wanted people to have something to wear while they weren't on Facebook that reminded them that they had support. That they were loved.

Jan 1, 2012 we launched our website http://squeakyj.com/. By now we had 300 members! The Arthritis Foundation was starting to take notice. I was invited to be on the committee for the 2012 Greater Hartford Walk. I shared my story and soon was asked to be an Ambassador.

By now I was in awe of the group dynamic. There were so many people just like me! Some ahead of me on their journey, some just getting diagnosed. All needing validation that this disease sucked. We shared our pain, our heartaches, loss, and fears. There was something else though. There was laughter, excitement, love, and support. We shared our triumphs and dreams. We shared what inspired us, what got us out of bed in the morning. We all had become one big family. We just happened to have RA.

In May we had our first Squeaker event. The Arthritis Walk. Peggy flew out from CA with her son Max, other Squeakers came from NH and MA. 9 people total from this support group were in attendance! It was a perfect day. To actually hug these souls that we had poured our hearts out to for the last 8 months. It's a memory I will cherish forever.




As I reflect on the past 365 days I am proud. We are over 500 strong and growing. We may be large in numbers but you wouldn't know if you stopped in for a visit. Everyone is welcome and Peggy and I work to make Squeaky Joints your "safe place". You can stop in, vent about your pain, share a laugh, and not worry about what people think. It's a closed group and we have a zero tolerance policy for judgement and bullying. Squeaky Joints is your haven.

Now for a mental note "I must start to dream bigger!" I can't wait to see where this next year takes us!

HAPPY BIRTHDAY SQUEAKY JOINTS!!

4 comments:

  1. Yippie! I loved living this journey with you! Your passion and excitement are inspiring! I love you!

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  2. Congrats on your success! Awesome!

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  3. I am a 45 year old male. I was diagnosed with R.A. about 6 years ago. This disease has changed my life. When it started, I knew little of what to expect and how this disease would progress. I started reading about it but since the symptoms, etc. didn't match my condition at that time, I relaxed and had a false sense of relief. I assumed it must be a mild form and that I will be fine.

    However my body started to feel the full power of R.A. after about a year and I started consuming a cocktail of allopathic medication. My body started to crumble - pain, inflammation in all possible joints, lack of strength, mental fatigue, confusion about the future and a total surrender to the disease. I also lost a successful business and that hurt me mentally and financially.

    The allopathic medication proved to be of little help and was almost (I was able to move with great difficulty) bedridden for about 18 months.

    This is when I decided to fight. I had to. The doctors were not able to give me a satisfactory recovery plan. I decided to try alternate routes to recovery. First with Ayurveda and then with Homeopathy. This new combination helped me. My body started to respond and this fuelled my quest for more alternate medical therapies.

    Today I use combination of Ayurvedic & Homeopathic medicines, I do Accunpucture, Yoga & Urine Therapy besides exercises to strengthen my body. It's been more than a year since I stopped allopatic medication and now depend solely on natural remedies. Besides natural medicines, I also stick to diet that's suitable to my body.

    My ESR (sedimentation rate) which was 130 has come down to 30 & CRP which was 80 is now 11 in about a years time.

    I believe that our body is capable of healing itself but sometimes we just have to provide the right stimulus for healing. If the stimulus is nature based (non chemical) the impact maybe slow but definitely long lasting and without any side effects.

    I have benefited from natural remedies and hope this information is useful to people with problems similar to mine. Also if anyone does benefit, please pay it forward and educate others.

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