Friday, December 12, 2014

Our Hands Can Community Stories: November 2014 – Thankful

Gratitude. Every November (and October in Canada), we all pay a little more attention to what we are thankful for. It makes you feel better to realize those small moments of quiet joy. In November, the Show Us Your Hands! Picture Project asked the inflammatory arthritis community “What are you thankful for?” We got lots of wonderful submissions.

Tia Maria showed us an impressive bruise, saying “I'm thankful for this bruised hand because it signifies finally getting my Remicade infusion and hopefully feeling this flare slip away soon.” Thank you so much for sharing your wonderful perspective with us!


Several people in the community are thankful for their pets. Among them were Trisha and her “cuddle buddy, Chuck … He loves me so much.” We all agree that he has a wonderful face! Jill was thankful for her cat, who in the true (and kind of endearing) spirit of all cats, turned its head just when the camera went off.




Christina submitted her photo on Twitter, saying she was “feeling thankful this weekend cooking with arthritis.” We don’t know what you were cooking, Christina, but it looks good!



Kathleen got a manicure and was “grateful to the lady who made my nails look nice …
Little things mean a lot.” Your hands look beautiful, Kathleen!



Can someone please do a drumroll? It’s time to announce our winner! Congratulations to Ruby for this great photo. Her caption was “When I was struggling to get a diagnosis in the early days one of the things I stopped being able to do was play video games. Specifically guitar on guitar hero and drums on rock band. I’m so thankful that 7 years after my symptoms started I'm playing a little guitar hero here & there.”



Contact us at infoATsuyhDOTorg with your mailing address and we’ll get the book to you before the holidays!

Do you want to be part of the Picture Project in December? Our theme is The Holidays. Take a photo of your hands doing something related to how you celebrate Christmas, Hanukkah, Kwanzaa, Festivus, or anything else, then post it on the Show Us Your Hands! Facebook page or on Twitter and tag your post with @showusyourhands. Submit as many photos as you’d like.

The December prize is a copy of Lene Andersen’s new 2015 The Seated View calendar.

Just a reminder: by submitting a photo, you give Show Us Your Hands! permission to use the photo and your name in our community programs, such as the monthly Our Hands Can! Community Stories.

Monday, December 8, 2014

Cateepoo, the Song

My husband is a singer/songwriter and guitarist for his band Hearing Shadows.  They just recorded one of their songs titled "Cateepoo". Enjoy.

Joint Decisions Empowerment Summit


You wouldn't know it from my blog, but several weeks back I attended the Joint Decisions Empowerment Summit sponsored and paid for by Janssen Biotech in Boston. (Life has been busy!)  It was a great time of sharing stories with other bloggers. Yay! I finally got to meet Wren from Rheumablog, Amanda from All Flared Up and Carla from Carla's Corner in person after following them for years! Meeting bloggers in person is still a weird experience because you come face to face with someone for the first time knowing so much about each other. I was also happy to meet some new blogging friends: From This Point. Forward , Spoonless Momma, and Titanium Triathlete , Amazing women!  Of course it was also nice to once again see The Hurt Blogger, Rheumatoid Arthritis Guy, Inflamed: Living with Rheumatoid Arthritis, and Getting Closer to Myself. I was surrounded by strong people with a purpose in life.

We were treated well at this summit.  On Saturday, we got a late start which gave my husband and I time to explore Boston by foot.  The summit began around 11:30 in a small conference room that had a very fireside feel.  Each blogger had their own comfy chair with a blanket and pillow.  There was even hot chocolate and whipped cream! Our motivational speaker was Tina Wesson, a Survivor winner who deals with RA herself.  She was definitely motivational. I loved her enthusiasm for life and not letting anything hold her back from adventure.  After an energizer break that always got us moving physically but also thinking about little life changes we can make such as looking for daily gratitude or standing to keep blood flowing to brain for better thinking, each blogger shared where she/he is right now.  We were asked to bring one physical thing that
represented where we are today.  I brought pink Post-its.  For me, they represent that I'm in a good place with my RA right now and I am able to do many things which is represented by all the Post-its I use.

Sunday started earlier with breakfast, video interviews, and more energizer breaks.  We then gave feedback on Joint Decisions, a collaboration of Janssen and Creaky Joints to provide patient information via teleconferences.  Finally, we concluded with group photos and then headed to the American College of Rheumatology Conference.  I then headed back to the hotel, met up with my husband, and went to dinner before heading to the airport for a delayed flight.

Overall, I felt everyone on the Biotech/Tonic team was there to listen to our needs and make us comfortable.  I appreciate that they gave us plenty of time with the team but also time to explore Boston. It was a great experience. I left feeling like I'd made a small contribution towards advocating for all of us.




Monday, November 10, 2014

Raynaund's Disease: Outdoor Weather Tips

One of the advantages of living with an inflammatory arthritis like rheumatoid arthritis for many years is you start to figure things out.   About two years after my rheumatoid arthritis diagnosis in 2004, I experienced my first episode of raynaund's disease.  Even with gloves on, my fingers looked like hotdogs and I had an extreme urgency to get out of the cold as quickly as I could.  The experience was beyond scary.

It took me a while to figure out how to live with Raynaund's disease, but I think for the most part, I've got it figured out.   With the following steps I have been successful in maintaining my daily walks each and every day no matter what Chicago's winters decide to dish out.

The key is to stay warm.  If you are warm from head to toe, it makes it more difficult for the hands and feet to get cold and that is the goal.  Don't let them get cold!!!

  • Keep your head warm.  We were told growing up that if your head is warm, you will be warm. I never knew how true this was until I was hit with Raynaund's.   I know women especially shy away from hats, but find several you love and make them your friends.  I always have a winter headband and hat with me because a hat doesn't seem to keep my ears quite warm enough and like my fingers and toes, they scream in pain when cold. On daily walks when I will be out for about 40-45 minutes, I really layer my head.  I start with a face mask, followed by a head band, and finally covered by a heavy duty hat.  It isn't pretty, but getting outside and moving is worth it!   
  • Wear layers.  You can always take things off if too hot, but once you are cold, it takes forever to warm up.  Besides my layered headwear as mentioned in #1, I layer my upper body.  I start with a cotton undershirt, then a hoody, and finally a quality winter coat.
  • Buy a nice pair of lined pants.  I have a pair from Eddie Bauer that I basically lived in last winter with the extreme cold temperatures.
  • Invest in a boots/shoes that are intended for outdoors.  I fought this for a long time but once I bought my Ugg boots, I knew they were priceless.
    So warm inside.  I also like that
    they are  rugged for snowy days.
     Not only are they roomy for my wonky feet, but they keep my feet 100% warm.  I don't even need socks!
  • Buy a variety of gloves - I keep a pair of gloves in every coat/jacket, two pairs in the car, in my purse, and even next to the dumbbells,  (Those things can be cold when you first handle them.)
  • Just a few of my gloves!




.
  • Invest in some gadgets.  My husband bought this little gadget for me last winter at Eddie Bauer's. It is nice, but you have to make sure it is charged.  I also keep a couple of packets of HotHands in my purse.  
  • Take advantage of belly fat.   This is the time of year that you want to be thankful for the roll of fat that has accumulated on your belly.  If all the above steps have failed me, I am not embarrassed to say that I stick my hand under my shirt and let the warmth of my belly warm my hands up. (Sorry, no pictures!)
  • Hot/Cold Showers - To keep the circulation going, I take hot/cold showers several times a week.  2-3 minutes of really hot water followed by a minute of really cold water.  Repeat.  Not environmentally friendly, I agree. 
  • Expose your face and hands to the sun when possible during the winter to make sure you are still absorbing some vitaimin D.   
It did take me several years of accumulating my winter gear because staying warm can be expensive.  But now that I have it all together, it makes a world of difference in my outdoor experiences.  In the past, I reduced my winter walk distance and avoiding outdoor fun with my family in fear of my hands, feet, and ears getting cold.  No more!  

Good luck this winter.  Keep warm. Don't let Raynaund's keep you inside.  

Monday, October 13, 2014

Our Hands Can! Community Stories: September 2014 – Work

Work. We all do it, every day. It’s the work we do for pay, the work we do as volunteers, and the work we do because it’s a passion. The theme for the Show Us Your Hands! September Picture Project was Work and we got a wonderful variety of submissions on our Facebook page. Our Advisory Council selected a favorite, who will receive a signed copy of Danea Horn’s wonderful book Chronic Resilience: 10 Sanity-Saving Tips for Women Coping with the Stress of Chronic Illness.

Here is a selection from the submissions for September. You can see the rest on the Show Us Your Hands! Facebook page.

Brenda added some very cute emoticons to the entry, illustrating her joy. Why is she so happy? “I am a music teacher, however I am currently home recovering from arthroplasty surgery (joint replacement in my hand), ecstatic that I'm able to play piano again.” We’re really happy for you, Brenda!



Helen has also found a way to keep doing what she loves. She says “I have had RA for 32 years. My life is great, don't let it rule your life, take control. My hobby is photography which I did give up for some time due to holding the heavy camera. So I brought a new lighter model. Love it!!” We’d love to see some of your photos, Helen!



April submitted the photo of her hands dressed up in snazzy fingerless gloves. “I work in IT. I spend all day, every day, with my hands on or near the keyboard. And when I get home, they are usually there too (since I also write). When my hands are not happy, it makes for a long day some days.” We know exactly what you mean, April.



The winner for September is Robin. Her photo told of the strength and determination it takes to live with inflammatory arthritis. She said “I'm working on my future. I move and push myself with exercise and weight lifting. I'm trying to ensure my future self is well and happy in life I have planned. Pain is pain and I can have it on the couch or making forward progress. I love my work.”

Well said, Robin. Congratulations on being our September winner!


Contact us at suyh14ATgmailDOTcom and we’ll arrange for the book to come your way.

Do you want to be part of the Picture Project this month? Take a photo of your hands doing something related to the Change of Seasons, then post it on the Show Us Your Hands! Facebook page or Twitter and tag your post with @showusyourhands. Submit as many photos as you’d like.

The October prize is a signed copy of Daniel P. Malito’s So Young: A Life Lived with Rheumatoid Arthritis. Thank you so much for supporting the Picture Project, Dan!

We want to remind you that by submitting a photo, you give Show Us Your Hands! permission to use the photo and your name in our community programs, such as the monthly Our Hands Can! Community Stories.

To see the other entries in our Picture Project, hop on over to the Show Us Your Hands! Facebook page. We look forward to seeing your hands!


Wednesday, October 1, 2014

What I Wish I Had Known About Rheumatoid Arthritis

     When I look back almost 11 years ago to when my rheumatoid arthritis symptoms really became noticeable and a diagnosis was given,  I can't believe I am the same person. I look back at the person I was in those early years and feel sad for that woman.  I see her crying alone in the shower, hyperventilating in the car after doctor's appointments, afraid to go to sleep because the symptoms might become worse overnight and she wouldn't be able to care for her children. I was a woman afraid to look at the internet or even go to the rheumatologist's office because what I saw for my future was extreme.  I saw myself unable to care for myself and most likely to have very wonky joints within the near future.  It scared the living daylights out of me.  Even though I had support around me, I felt alone.

     I feel sad for the woman I was because she was naive.  She wasn't aware at the time that the pictures she saw and the stories she read were often the worse case scenarios of rheumatoid arthritis or were of individuals who were at a point of struggle with their disease. She didn't know that there were people living great lives and just not sharing them on the internet or in books. Luckily that has changed.  She didn't realize then that rheumatoid arthritis was fickle and could come and go as it pleased.  Most of all, that woman didn't realize her own strength and determination.

     Starting my blog in 2008 was most definitely the best therapy I could have given myself.  It was through writing that I could share my fears, pain, and eventually my successes.  I discovered that there was a community of people out there who wanted to support each other.  I felt less alone.  Best of all, I learned that while we all shared a common disease, how we dealt with the disease and how it dealt with us was very individual.

     Sometimes I imagine myself sitting outside of a rheumatologist's office just waiting for newly diagnosed patients. I give them a big yet gentle hug and tell them what the doctor neglected to mention.  "You will be okay.  No matter what your journey has in store for you, you will find your way. You will have really bad days, but you will also have good days.  You will find the path that is best for who you are. Don't be afraid to cry.  Don't be afraid to look at worst case scenarios, but also don't be afraid to look at the best case scenarios because your disease can fall anywhere within that spectrum. Try new treatments.  Be your own best advocate. You are the only one that can make the best decisions for your treatment."  I would share my story if they were interested letting them know that some days, months, and even years have been extremely difficult.  They might notice a small change in some of my swan-like fingers, but most likely they will notice exactly what I wish I had seen early on - a woman that is active, happy, and making more of her life than her disease.  That is what I wish I had seen and known early on in my disease.  Luckily, it is what I have seen in many of the friends I have met online.

On Daniel P. Malito's site he says, "It is guaranteed that you do not know how much a disease called arthrtis can impact your life."   This is so true. The impact definitely is life changing.  The woman that I am today sees that that impact wasn't necessarily all bad.  I can look at the nodules, enlarged knuckles, and slightly wonky fingers and see that I have survived the negative impacts and moved on to embrace the positive impacts that can also come with living with arthritis.  Perhaps that isn't something someone can share with you early on, but must be experienced.  





  

Tuesday, September 9, 2014

Our Hands Can! Community Stories — August 2014: Food

What can your hands do with food? That was the Show Us Your Hands! Picture Project theme for August and it really hit a chord in the community. We received a lot of terrific submissions on our Facebook page. Our Advisory Council reviewed them all and selected their favorite to win the prize for August, a copy of Kim P. Miller’s terrific book Living with Juvenile Arthritis: A Parent’s Guide. See who won later in this post.

Here is a small selection of the August submissions:
Kelly gave us a two-for-one submission of her and her husband’s hands holding coffee cups. She said “Coffee is surely part of the food pyramid in my life! This is a picture of my husband and I, who both live with autoimmune arthritis, sharing a walk on our anniversary!” We agree completely, Kelly. Coffee is essential.


When Martine posted her submission, she also gave us a good tip. When writing the story to go along with her photo, she explained “I just finished preparing my yearly garlic paste - I grow my own organic garlic, and preoare a paste with olive oil. I freeze it in little quantities and voilĂ ! Ready for all culinary experiences, all year-round.” Great idea, Martine!


Kim posted a terrific shot of her hands peeling shrimp for special occasion. This was a very important step in making shrimp Alfredo, the dish her son had requested for his birthday dinner. Happy birthday to your son, Kim!


This month, we also wanted to show you the face (and hands) of one of our Advisory Council. Andrea Sarullo posted this creative collage of heard eating sushi, one of her favorite foods.


And the winner of the prize for August is AnnLouise! She said “This is my croquembouche - the first time I've been able to bake since being hit hard and diagnosed earlier this summer, just a week after my 20th birthday.” That’s is seriously impressive creation, AnnLouise! Congratulations on being this month’s winner! Send us an email at infoATshowusyourhamdsDOTcom to get your prize.


Do you want to go participate in the Picture Project? The theme for September is “work.” This isn’t just about paid work, but also anything you do as a volunteer or in your home (yardwork and housework counts!). Here’s what you do:
Take a photo of your hands at work, doing anything productive. Post it on the Show Us Your Hands! Facebook page and tag your post with #showusyourhands.

And that’s all! Submit as many photos as you’d like. At the end of the month, our Advisory Council will choose their favorite. The September prize is a signed copy of Danea Horn’s wonderful book Chronic Resilience: 10 Sanity-Saving Strategies for Women Coping with the Stress of Illness. Thank you for donating your book to the Picture Project, Danea!

We also should let you know that by submitting a photo, you give Show Us Your Hands! permission to use the photo and your name in our community programs, such as the monthly Our Hands Can! Community Stories.

To see the other entries in our Picture Project, hop on over to the Show Us Your Hands! Facebook page. While you’re there, why not submit a photo yourself?



Sunday, August 17, 2014

#100happydays

Recently my sisters and I accepted the "100 happy days" challenge of sharing one photo per day to Facebook that brought us joy.  The goal of the challenge is to take time during our busy days to focus on the moment we are in. Since my sisters live in different states than me, this was a great chance to receive a glimpse into their daily lives while sharing a bit of my own.

My first day started off with celebrating my son's 18th birthday.  My 100 days took me through my 26th wedding anniversary and my daughter's 16th birthday.  These were the big "happy" events, but most were smaller everyday things like getting a free Chipotle bowl, receiving hugs from everyone in my family before they took off for the day, time with my family on vacation, a bike ride, walking with Izzy, flowers I bought for myself, an evening at home alone, and many more.  Some days were a struggle.  During my "100 happy days" my mother-in-law was admitted to hospice care and died.  On some of these days I had to dig a little deeper to find something that made me happy.  The good news is that in my 100 days, there were numerous things that made me happy.  Some days I had to make a choice of what I wanted to share on Facebook as my "happy" thing because as the days went on, it was easier and easier to find things that made me happy.   I woke up thinking, "What do you think is going to make you happy today?"   Some days I had predicted exactly right and other days brought surprises like when my husband brought home a dark chocolate Ritter Sport for me because he thought I might need it.   Many of the things that made me happy with my husband, children, family, and friends were too personal to share and I chose to keep those happy events to myself, but found myself reflecting on them a little more than I usually would have.

My overall feeling after participating in "100 happy days" is that I am glad I did it. I received a lot of positive feedback from friends that they enjoyed seeing what made me happy and that it even helped them to focus more on the little things that happen daily in their lives.  Most satisfying is knowing that no matter what the day brings, there is always something that can bring a little joy into my life.  That is quite a comfort.  

Here's my last entry:  

 Day 100: It makes me happy that I have been given such wise and loving children who from an early age taught me that true happiness is opening yourself up to the amazement, joy, and contentment in everyday activities. When Alexander and Sophia were young, we had a nightly ritual of cuddling up in bed and sharing something we liked about our day. No matter how much we had spent on the day or how big the plans, the kids would answer with very simple things like, “I got to sit on Dad’s backseat (shoulders).” or “Mom shared her dessert with me.” They have given me a very special gift –the ability to find a smile every day, no matter what the day brings. 

It also makes me happy that I could share my #100happydays with you and that along the way I received such positive feedback in the comments section or in person.

Perhaps you aren't interested in publicly sharing what makes you happy and that's great, but I'd like to challenge you to do 15, 20, or even 30 days of things that make you happy.  I think you will be surprised at how your thoughts have an easier time moving away from the negative and focus more on the positive that is happening in our lives.   

Thursday, August 14, 2014

Our Hands Can! Community Stories — July 2014: Holidays/Vacation

Before we show you some of the wonderful entries in the Show Us Your Hands! July Picture Project, we’d like to tell you more about what it is we’re doing.

It is easy to forget all the amazing things we can do when living with inflammatory arthritis.  Photos are a great way of putting a picture into our mind of all the things we are accomplishing day to day. And that, in a nutshell, is what the Show Us Your Hands! Picture Project is all about!

Each month we come up with a new theme and ask the community to submit photos of what their hands can do related to the theme. This is one of the ways in which we fulfill our mission of uniting and inspiring the inflammatory arthritis community. But we can’t do it without you. Why not join the Picture Project?
The theme for August is “Food.” Here’s what you do:
1.   Take a photo of your hands chopping, grilling, cooking, eating. You get the idea. If you’re the parent of a child with JA, why not get your kids involved, as well?
2.  Post it on the Show Us Your Hands! Facebook page.
3.  Tag your post with #showusyourhands.

And that’s all! Submit as many photos as you’d like. At the end of the month, our Advisory Council will choose their favorite. The August prize is a copy of Kim P. Miller’s Living with Juvenile Arthritis: A Parent’s Guide. Thanks so much to Kim for the donation! We also should let you know that by submitting a photo, you give Show Us Your Hands! permission to use the photo and your name in our community programs, such as the monthly Our Hands Can! Community Stories.

July’s theme was Holidays/Vacation and we got some amazing entries. Here is a small selection:

Rebecca went to Disney and says she “made it through and had a blast!” It sure looks like both you and the little one on having a good time!



Karen posted this photo, saying “Not exactly "vacation", since the only reason I'm home is because I was let go from my job in April. But I've been using the time to create some jewelry.” We love that you’re making something beautiful out of a difficult time, Karen!



Sheri shared this shot, telling us that she is “spreading the word about Scleroderma awareness in Blarney, Ireland!” Way to go, Sheri!



Congratulations, Sheri. You’re the winner of the July Picture Project! You’ll get an e-book copy of Lene Andersen’s 7 Facets: A Meditation on Pain. Check your inbox for a message from us with details on how to claim your prize.

To see the other entries in our Picture Project, hop on over to the Show Us Your Hands! Facebook page. While you’re there, why not submit a photo yourself?


Monday, July 21, 2014

June 2014 Our Hands Can! Community Stories

Our Hands Can! Community Stories June 2014: Living Things


Show Us Your Hands! is launching an exciting new community program called the Picture Project. Every month, we ask people who live with inflammatory arthritis to take photos of their hands [involved in] doing something related to the month’s theme and post them on our Facebook page. The inaugural monthly Picture Project was this June on the theme of Living Things.


To celebrate this new program, we asked the Show Us Your Hands! Advisory Council to choose their favorite among the submissions. The winner will receive a signed copy of Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain by Lene Andersen, our Director of Community Outreach. We received a wonderful variety of submissions, some of which have been chosen to be included in this month’s Our Hands Can! Community Stories. Read on to the end of the post where we announce the winner.


And now we’d like like you to meet a few of the wonderful submissions on the theme of what your hands can do with Living Things.





Emily Fowler Eller gave us our very own “Daily Squee” when she submitted this photo of her hand holding one of her newborn English Angora rabbits. Around our international offices, there was a collective awwww. Ellen says that her bunnies are “sweet friends and produce wool which I spin into yarn and knit.”





Robyn Crocome shared a photo from her garden. She said “I am so thankful that I can still feed the winter garden birds under the glorious tree dahlia” We were thankful for her thoughtful perspective on gratitude and giving back to other living things.



Greida Quintero submitted this powerful photo of her hand with a stethoscope. She said that “today I can do my work to take care of my patients.” Thanks for the wonderful work you do, Greida. It’s good to know that there are people like you who have inflammatory arthritis and work in the healthcare system.



Angelica Jacobs shared a beautiful moment with her faithful companion. Angelica shared how important her dog is to her, saying “when I'm not well, she sleeps on me. Follows me everywhere and talks to me (dog talk).” Those of us who have pets completely understand what you mean, Angelica!


Thank you to everyone who submitted photos in our June Picture Project! And now…. The winner!


Congratulations to Greida Quintero! We’ll be in touch to arrange sending the book to you.


Do you want to help us unite and inspire the inflammatory arthritis community? Join the Picture Project! Post a photo of what your hands can do on the Show Us Your Hands! Facebook page. July’s theme is Holiday Fun. All submissions qualify to win a copy of 7 Facets: A Meditation on Pain by Lene Andersen.


What can your hands do for Holiday/Vacation Fun?


*Thanks to the Advisory Group for choosing the winner!