Thursday, July 28, 2016

Pregnancy and Parenting with Arthritis Study by the Canadian Arthritis Patient Alliance

Though I had a lot of friends who were new mothers also, none of them could relate to the specific challenges I was facing because of my RA.

Juvenile Arthritis Camp

After speaking about Relationships & Intimacy at the Arthritis Foundation's Juvenile Arthritis Conference West, I left Arizona at 4:30am the following morning. I flew back to Denver and drove straight to Estes Park, where I spent an amazing week as a counselor at Juvenile Arthritis Camp. 

I had the opportunity to volunteer at JA Camp once before, back in 2011, but hadn't been able to return again until this year due to having my own kids to handle! (In 2012 I had a seven week old baby, in 2013 I had a one year old, in 2014 I was about 9 months pregnant with my second baby - and my RA was flaring badly to boot, and in 2015 I had two crazy toddlers!) This year, since my boys were in camp themselves most of the week, I was finally able to return - and I'm really glad I did!

As always, camp was crazy and full of activities! We rode the aerial tram to the top of the mountain, where we climbed on rocks and chased chipmunks. We did arts and crafts. We went horseback riding. We went swimming every day. We went boating. Archery. Rock climbing. Night hiking. Games. Songs. On town night the kids got to ride bumper boats and go karts. The junior counselors got to go zip lining. Even though these kids are living with arthritis, they never cease to amaze me with their energy and enthusiasm! 

We also had a "talk with the doc" session, where the campers got to talk to a pediatric rheumatologist and nurse (both of whom were also amazing counselors all week!), adults living with arthritis (me and a few other counselors), and each other about life with arthritis. We had an amazing "celebrities" session too, where junior counselors shared their perspective on school, sports, injuries, bullying, depression, fundraising, and advocacy - they were all so well spoken!

This year I roomed with the camp nurse, which meant that our room was also the infirmary. We had a peg board in our room with 56 gallon sized Ziploc bags hanging on it - and each bag contained multiple bottles and packets of pills and vitamins. Our fridge was full of syringes. It was a visual reminder of the challenges our campers face every day. And maybe it's because my kids are so much younger and still need a lot of hands on care, but I was also really surprised to see how self-sufficient most of these kids were when it came to being responsible for their own medication. With a reminder that it was time for meds, most of them were able to find their own bag and knew how much medication to take and when. Some gave even gave their own injections. And, when med time was over, they all just went back to being crazy kids!

I really enjoyed my time at camp this year and hope I will be able to return again next year!! 







Juvenile Arthritis Conference West - Relationships & Intimacy

Those of you who follow me on Facebook, Twitter, and/or Instagram know that I had a crazy busy week last week - I wanted to share some highlights!

Recently I've been supporting my amazing friend Kirsten as she works to develop resources and support for an issue I have long argued needs to be discussed more - the impact of arthritis on our sex lives. Kirsten has been hosting the Chronic Sex Twitter Chat (every Thursday at 7pm ET) and she has gathered amazing resources on the Chronic Sex website. Because of this great work, Kirsten was asked to moderate a session on relationships and intimacy for the young adults at the Arthritis Foundation's Juvenile Arthritis Conference. I was lucky enough to be asked to join the panel as well - along with Jeremy Forsyth, who not only brought a male perspective but also the perspective a partner/caregiver as he and his wife both live with chronic illnesses.

Rather than being a lecture or talk, the session was more of a collaborative discussion with the young adults who attended the conference and are living with arthritis themselves. We talked about self esteem, dating, relationships, and, of course, sex. We worked hard to provide these young adults with a safe space to ask any questions they might have and to share their worries and concerns, either out loud or via written anonymous index cards. As the panel, we admitted that we don't have all the answers to these questions - and that we still struggle with many of these issues in our own marriages. But we did our best to share what we've learned from our own experiences and emphasize that it is natural to struggle with these issues - but that you don't have to struggle alone. We shared resources for information and support, as well as tips for talking to their doctors and partners. 

Though everyone in the room was over age 18, I will admit that they seemed quite young to me - thought perhaps that comes with the territory of being a mom myself! Despite their youth, I truly hope that their parents were grateful (or at least ok with) our session. My own kids are still a bit young to talk directly about sex (so far we've only discussed that private parts are private, and parents and doctors are the only ones allowed to touch besides themselves), but when my kids are older I hope they will feel comfortable asking any questions they have. But, if they aren't comfortable asking me or their dad, I truly hope that they will also have a safe resource to turn to to learn about healthy intimate relationships. 

I'm really thrilled that the Arthritis Foundation was willing to embrace this topic - which will ultimately play a huge role in quality of life these young adults living with arthritis. And I am very excited to participate in this session again in a few weeks - at the Juvenile Arthritis Conference East in Philadelphia! 



Wednesday, July 27, 2016

Babywearing for Parents with RA

After more than 4 years of wearing both of my boys, I honestly can’t imagine motherhood without the benefits of babywearing.

RiverRide 100

As you all know, this year I'm planning to ride in the Arthritis Foundation's California Coast Classic - a 525 bike ride from San Francisco to Los Angeles that will take place in September. I'm honestly a little bit overwhelmed by the scale of this goal, but I am excited to give it my best try! If you are feeling inspired - and yet overwhelmed! - by my crazy commitment, I just found out about another ride in support of the Arthritis Foundation that might interest you.

RiverRide 100 began in 2013, when a group of nine bikers traveled from Pittsburgh to Washington D.C. over five days. Jeff Krakoff, one of the original bike riders and one of the facilitators of the event, has been personally living with rheumatoid arthritis for years. In 2014 and 2015, the event evolved from five days into a one-day 100-mile bike ride.

This year riders can pledge to ride 50, 75, or 100 miles in support of the Arthritis Foundation. They can complete their mileage in one day or throughout the entire month of August. Participants can take part from anywhere in the country, and each will be able to create their own fundraising webpage or team page through the RiverRide 100 CrowdRise site. The amount of fundraising, mileage, and pace of the ride is completely up to you!

This bike ride challenge is for anyone, anywhere, with any level of bike riding ability. If you are interested, click here to learn more!



Friday, July 22, 2016

Facing Forward: AmandaRae

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: AmandaRae
Location: Idaho, US
Diagnosis: Rheumatoid Arthritis and overlay of Lupus
Age at Diagnosis: RA at 19 years old & Lupus overlay at 30 years old

How are you currently treating your condition?
I currently am only on prednisone 10mg for the RA and Plaquenil for the Lupus. I was on Remicade infusions but when I was diagnosed with Lupus I had to be taken off Remicade because it causes Lupus to flare. I also try to cook with as many anti-inflammatory spices and foods as possible (cinnamon, black pepper, turmeric) and limit sugar, salt, tomatoes, and fried foods. I stay active whether it's going to the gym, doing my at home workouts, or going on family walks and hikes. For down time I soak in Epsom salt baths and listen to my body for when I just need to lay down and relax for a bit.
 
What are the biggest challenges you have faced since your diagnosis?
The biggest challenges I have been faced with since my diagnosis is the horrible fatigue. I work full-time 8-5, I'm a mom of two active boys, and I'm a wife. I feel so guilty if I am too tired to play with my kids and I really try to push through it. I have been working really hard on learning self-care and the importance of it for myself and my family. I am learning to manage it a lot better by organizing my day and caring for myself. You cannot take care of your family if you are depleted.

What are your favorite tips and tricks for managing everyday tasks?
My favorite tip for managing everyday tasks is to delegate! My oldest son is now 11 which mean he can help with chores (and it's good for him to learn how to do household chores). For example, he can unload and load the dishwasher, take out garbage, vacuum, and clean his room. My 3 year old can feed and water the dogs and keep his room cleaned up. I am a very hands on mom and I tend to think that I have to do everything for my kids, but I am slowly learning that is not the best thing - not only for myself but also for my boys. It's good to teach your children responsibility and skills.

How do you manage to keep facing forward every day?
I stay positive, I stay strong willed, and I stay determined! I know the importance of self-care and I know the importance of not feeling guilty for times that I need to rest. I look at each day as a new day and I embrace my "imperfections" (RA) and I use them as a stepping stone. Life is Beautiful!

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would tell my past self that life is about creating your story and that this diagnosis is a beautiful chapter just waiting to be used to encourage and inspire others why may be having troubles accepting or embracing their flaws and diagnosis. I would tell myself to use it as a stepping stone now...it took me 11 years to realize this.

Do you have a blog you would like to share?
I have a facebook page called I'MPERFECTion. It's about me...a mom and wife living with RA, embracing her flaws, betting herself, and having fun on her way to becoming I'MPERFECTION.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Friday, July 15, 2016

Facing Forward: Kristen

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Kristen
Location: Pittsburgh, PA
Diagnosis: Ankoloysing Spondylitis, Migraines, GERD and Chronic Dry Eye
Age at Diagnosis: AS at 31 (4 months after my second baby was born)

How are you currently treating your condition?
I'm still really struggling with treatment. I tried Enbrel first. Started Aug 2015 and just stopped a month ago. I was about 80% better but it wasn't covering my flares, so I was perpetually on prednisone. I'm two doses into Humira and quite frankly I'm doubtful it's going to work. I'm only at about 20% and back on prednisone.
 
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I have found so far is getting people to understand I don't feel well. My swollen joints don't look very swollen to everyone else and I'm good at hiding pain after years and years of migraine that weren't controlled very well. You get into this trap where you almost act worst than you feel just so people will believe you. It's messed up and I try not to fall into it because it doesn't matter. I know how I feel and I know that it doesn't have to define me. It's just hard some days.

What are your favorite tips and tricks for managing everyday tasks?
I use a rubber grippy thing to open jars (hands). I have a heating pad next to my bed and under my desk at work (hips, lower back). I try to take deep breaths often (to prevent rib fusion and ease the ache in my sternum). I sleep with a huge preggo pillow to try to pad what hurts the most trying to sleep. I don't lay on the floor anymore but invite the kids up to the couch with me instead. We Netflix more than I'd like when I need to nap. I don't hesitate to ask for prednisone when I can't keep up.

How do you manage to keep facing forward every day?
I try to make a list in my head of everything I'm grateful for when it's hard. Like that it's not cancer, I'm not dying, running water, HOT water, comfy bed, etc. There are so many good things in my life. I just have to see them.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Be patient. It won't be as bad as you think. Push when you know the answer is not right - my first Rheum said my MRI was fine, my second actually looked at the scans and started me on a biologic immediately.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.  

Wednesday, July 13, 2016

New Study Shows Vagus Nerve Stimulation May Reduce RA Symptoms

A new study has led to promising potential for treating RA through electrical stimulation of the vagus nerve.

Friday, July 8, 2016

How To Handle Parenting With Rheumatoid Arthritis

I'm pleased to announce my first guest post for another great RA support site: NewLifeOutlook|RA!

From an RA perspective, I felt so alone when I started my journey to pregnancy and parenthood. Since then I've worked hard to try to provide and encourage more resources on this topic - so that future parents-to-be with RA will feel less alone than I did! 

So I'm always pleased to be asked to write about a topic that is near and dear to my heart: How To Handle Parenting With Rheumatoid Arthritis.

Facing Forward: Sue

Facing Forward is a series that shares the lives of people living with arthritis and other invisible chronic illnesses. The goal of the series is to see how we are similar and how we are different - and to remind us to keep moving forward because we aren't alone!

Name: Sue
Location: Illinois
Diagnosis: Type 2 diabetes
Age at Diagnosis: 37 yrs (about two weeks before turning 38)

How are you currently treating your condition?
Diet and exercise.
 
What are the biggest challenges you have faced since your diagnosis?
I often get frustrated that I can't eat like everyone else. Other people can sit down with a big bowl of popcorn and watch a movie or go out for ice cream without having to worry how many carbs are in that treat. Balancing my desire for various foods and the need to keep my glucose under control is hard. Type 2 diabetes also has a stigma of being caused by lifestyle. My lifestyle is no different than anyone else. Often I get upset with people who judge and blame people with Type 2 for our diagnosis, making assumptions that aren't true.

What are your favorite tips and tricks for managing everyday tasks?
Planning out my meal beforehand helps a lot if I make sure I'll have enough low carb foods that taste good and satisfy my hunger.

How do you manage to keep facing forward every day?
Moderation not deprivation. I allow myself lazy days and treats. If I'm too strict on myself, I get down about life or find myself binge eating.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Find your tribe now. Don't wait. Find that group that will lift you up and support you when you need it. Find those people who really know what you're going through because they're going through it too.

Do you have a blog you would like to share?
My blog is Diabetes Ramblings.

Would you like to be featured on Facing Forward? If so, please send an email to mariah@fromthispointforward.com.