Tuesday, October 27, 2015

Facing Forward: Shelly

Facing Forward is a series that shares the lives of people living with arthritis and other invisible 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: Shelly
Location: Central Minnesota
Diagnosis: Rheumatoid Arthritis
Age at Diagnosis: 27

How are you currently treating your condition?
After having a really bad experience with the Enbrel injection I decided to seek out alternative options for care.  I located a physician in my area who focused more on food and exercise to better yourself.  She suggested fixing what seemed like "leaky gut" and clean eat.  Now if you know me, I cannot clean eat, I mean I won't do that to myself.  So I tried the supplements she suggested from a company called Plexus.  She recommended them due to their all natural ingredients.  She had suggested I take a few supplements so I did.  After 2 weeks I noticed my constant craving for sugar was gone so I decided to TRY clean eating.  I cut out dairy because she said it really adds to inflammation and I bought foods that were gluten free and non gmo when possible.  After 2-3 months of the supplements and eating better I slowly stopped taking my prescribed medication and I am happy to say I don't take any as of right now.  Do I still have flare ups?  Absolutely, but to not have the constant side effects on the medication and to generally feel good has all been worth it.

What are the biggest challenges you have faced since your diagnosis?
I tell a lot of people that the HARDEST thing about having Rheumatoid Arthritis is looking at where you are now and where you were.  Remember when you could open that jar, the toothpaste, or a water bottle on your own?  Those days are gone.  That was so hard for me, I would get in that mindset that I would forever have to rely on someone to do things for me.  That didn't go over well at all because I am very independent so unfortunately my husband got a whole lot of attitude from me during those times when I needed help but didn't want to ask for it.  Luckily those days are few in far in between but they will always be there.

What are your favorite tips and tricks for managing everyday tasks?
When I have a flare up, the one thing I want to do more than anything is stay in bed.  With a one year old though that's not possible so I set tiny goals for myself throughout the day.  I physically write them out and check them off as I get them done.  It makes me feel like I have accomplished something, though it might not be much, on those tough days.

How do you manage to keep facing forward every day?
My son has been a huge motivator for me.  He is now one and is my whole entire world.  I want to be sure that I am able to care for him every single day no matter what his needs are, and no matter how heavy he gets.  He is my light.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I will never forget getting the call that said I had Rheumatoid Arthritis.  I was in my car and I immediately called my now husband and broke into tears.  If I could go back I would have told myself that life isn't over.  I truly thought "this is it".  As I learned more and more about RA I found a way to fight for the quality of life I want.

Do you have a blog you would like to share? 

Are you interested in being featured on Facing Forward? Email me at mariah@fromthispointforward.com!

Friday, October 23, 2015

It Still Aches

Today Facebook reminded me about this picture - and it made me cry. Facebook has no way of knowing, but this picture was taken about 30 seconds after I nursed this little dude for the last time ever. I had to wean so I could start medications to treat my RA - chemotherapy medications that are obviously not safe for babies. 

I know with certainty that I made the right choice. My RA is under better control now than it has been for years. I have more energy and less pain, so I've been able to come a lot closer to being the kind of mom I want to be. 

But today this now 15 month old little dude is sick with a fever, and I would give anything just to be able to put him to my breast for comfort. I know I made the right decision, but it wasn't at all what I wanted or planned. And it still aches.

This is an example of why I work so hard at advocacy and fundraising for arthritis - and at providing resources for moms with chronic illnesses. I hope that someday in the future, moms with RA (or little girls growing up with JA) won't have to make this kind of difficult and painful choice.

Tuesday, October 20, 2015

The RA Guy Foundation

My amazing friend RA Guy recently launched the RA Guy Foundation, which offers a positive message of hope for people living with rheumatoid arthritis. Go check it out!! (And keep your eyes peeled for cameos from yours truly in the "Stories of Courage" sections!!)
The RA Guy Foundation’s programs put a focus on living. Positivity. Honesty. The ability to laugh as you bravely walk this path. Comfort and encouragement by actively finding ways to overcome the emotional and physical challenges of the illness. An immediate and continued emotional connection. Real actions for real change.

Monday, October 19, 2015

#JointDecisions Twitter Chat on 10/20 @ 6pm

Are you on Twitter? If so, please join us tomorrow for a live web chat about how to build your care team and enlist supporters in your RA journey!

Hosted by CreakyJoints and featuring yours truly and the lovely Britt of @HurtBlogger!! I look forward to chatting with you tomorrow!!

6 Ways to Support a Partner With Chronic Illness

Knowing how to help a loved one living with a chronic condition can be such a challenge. For six ways to support a partner living with chronic illness, check out my latest guest post for Mango Health!

Tuesday, October 13, 2015

Understanding the Family Medical Leave Act (FMLA)

If you – or someone you love – live with a chronic illness, you may eventually need to take time off from your job to focus on a health issue. Luckily, in cases of medical need, there are laws in place to help you have a job to come back to! 

Over-scheduled!

A chili cook-off. A movie in the park...All of these events are supposed to be fun. But as I look at them stretching across every foreseeable weekend, I can’t help but feel a sense of anxiety.

Wednesday, October 7, 2015

The Arthritis Foundation’s California Coast Classic

In the darkness before the sun came up, 300 people strapped on their helmets, and mounted their bicycles with a shared goal-to raise awareness and funds to support people living with arthritis.

Monday, October 5, 2015

Let's Talk About Scheduling Sex, Baby!

Sometimes, I write about my sex life on the internet. Or, more accurately, I write about the ways in which I am struggling with my sex life. It seems sort of crazy to share such an intimate part of my life so publicly, but I do it because I know I am not the only one struggling with these issues. And I know from experience exactly how valuable it can be to feel like you aren't alone.

Most of my writing is published here or other health/chronic illness related websites. But the last time I wrote candidly about my sex life it got picked up by BlogHer, because I think it is a topic that resonates with a much larger audience. I also think it is a topic that is important to overall well being and health. So, on sort of a whim, I submitted this piece to a mommy blog with large following called Scary Mommy - and they picked it up and published it last week!


I'm very excited that Scary Mommy picked up the piece, but I do have to admit to being a little disappointed about the negative comments it received - both on the article itself and on Scary Mommy's Facebook page. Though I didn't engage with the comments in either of those locations, I do feel the need to make my thoughts on the subject clear here.

Many people announced (quite loudly!) that they would never consider scheduling sex, and that it was sad if you have to resort to doing so. To those individuals I say this: that is fantastic for you! I'm honestly glad that your sex life is great and requires so little effort on your part. Unfortunately, that isn't the case for everyone. Some of us are struggling just to get through the day, and so maintaining a healthy relationship in the face of huge challenges - like young children and debilitating chronic illness - can often take effort and focus. And there is absolutely nothing wrong with that. Everyone needs to do what works best for them. For my husband and I, a discussion about scheduling sex turned out to be healthy and invigorating. It led us to a way to address some other issues in our lives, leading to an overall improvement for our family. So I wanted to share my personal experiences in case someone out there is struggling and this might be useful or helpful for them to consider.

The other set of negative comments the article received centered around consent within marriage. Some people seemed to think that by scheduling sex I was advocating for having sex under any circumstances. So let me be clear and say this: I am not advocating that you have sex with your partner if you really don't want to. The situation I am sharing about is one in which we both wanted to have a better sex life, but we were really having trouble making it happen as a practical matter. For us, setting aside time to focus on each other and on myself worked well for helping us overcome some of the challenges we were facing, together. And, though the discussion started out about scheduling sex, the result turned out to be about far more than just sex.

In any event, there were at least a couple of comments from people with whom the article actually resonated - including some other mamas who are also struggling with small children and rheumatoid arthritis. And honestly? If I was able to make even one of them feel less alone - or hopeful that improvement is possible - then it was worth it to be open and vulnerable with my story.

Paying For Help

It does still feel weird to pay for help. Sometimes I feel like a “good mother” would be able to do all of this herself. But you know what? That’s nonsense.

Saturday, October 3, 2015

California Coast Classic - Day 8

Today, on the eighth and final day of the 2015 CCC, the riders covered 56.2 miles from Ventura to Santa Monica. Unfortunately, Austin and I both started the day with less energy than we would have liked. Though our boys are usually good campers, the little guy had a bit of a rough night last night. I spent at least an hour around midnight walking with him as far from the other tents as possible so that I didn't keep the whole camp up!

After we saw Austin off on his final day of biking, I headed to the finish line to help with setup. In my desire to be helpful, I stupidly did way more physical labor than I should have. I moved probably 20 cases of soda and single-handedly set up bike racks for 300 bikes!! So by the time the riders arrived I was beyond exhausted and sore, which wasn't very smart of me.

But, as always, it was amazing and emotional to watch the riders come in. The first to arrive was Dee (who was featured on Facing Forward on Day 3). Her accomplishment today was so inspiring for me. By the time Austin and the other riders arrived at the finish line, our boys were pretty grumpy (it was way past nap time), but it was still very exciting to welcome 300 riders and congratulate them on their amazing accomplishment. 

Then we were super happy to head to Dapa's house for a swim, dinner, and a comfortable bed. We head back to Colorado tomorrow! And we're proud to have been part of raising am lay 1.5 million dollars for the Arthritis Foundation.







Three CCC finish lines - 2012, 2013, & 2015!!

Facing Forward - California Coast Classic Edition: Austin

Facing Forward is a series that shares the lives of people living with arthritis and other invisible 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!

This special edition of Facing Forward shares the stories of the individuals involved in the Arthritis Foundation’s 15th Annual California Coast Classic – a 525 mile bike ride from San Francisco to Los Angeles.

Name: Austin
Hometown: Louisville, CO
Riding In Honor Of: my wife Mariah
Honoree’s Diagnosis: Rheumatoid arthritis
Age at Diagnosis: 25

Why is it important to you to participate in the California Coast Classic?
I love talking with people about my experiences and helping them understand that arthritis isn't just a disease for old people. Sharing stories with other people facing similar challenges is a great way to pickup new tips and tricks.

What are the biggest challenges you have faced since your wife’s diagnosis?
Feeling like I am supporting Mariah enough. Helping her stay positive (and helping myself stay that way too).

What are some of your favorite tips and tricks for helping someone with arthritis manage everyday tasks?
Little things can make a big difference: folding the laundry, unloading the dishwasher, etc. Anything that can be taken off her plate. Also we think of the RA as our problem to face together, not just hers to face alone.

As a caregiver, how do you manage to keep facing forward every day?
Laugh. It's waaaaaay better than crying and more fun to share with others.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
This will only be as limiting as you allow it to be.

Friday, October 2, 2015

Facing Forward – California Coast Classic Edition: Dan


Facing Forward is a series that shares the lives of people living with arthritis and other invisible 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!

This special edition of Facing Forward shares the stories of the individuals involved in the Arthritis Foundation’s 15th Annual California Coast Classic – a 525 mile bike ride from San Francisco to Los Angeles.

Name: Dan (Team: The Deviants)
Hometown: Pasadena, CA
Diagnosis: osteoarthritis, right knee
Age at Diagnosis: 59

Why is it important to you to participate in the California Coast Classic?
I’ve ridden in the California Coast Classic (CCC) for 12 years and cannot imagine not doing it. This is my first year riding with the diagnosis of arthritis myself. I joined the Pacific Region Board of the Arthritis Foundation two years ago, and have been on the CCC leadership team for six years. My focus is on finding and nurturing our relationship with corporate in-kind sponsors like Dole and Coffee Bean.

What are the biggest challenges you have faced since your diagnosis?
My challenges since diagnosis are to protect my knee. No running or other impact sports, avoiding stairs. 

How has your diagnosis made it more difficult for you to stay active?
My arthritis has made it more difficult to stay active. I love golf but cannot play back to back these days. I love hiking but need to minimize it. I love running and tennis but can’t do them anymore. I need to avoid stairs – up or down – because of the extra stress on the knee joint.

What are some of your favorite tips and tricks for staying active with arthritis?
Staying active for me means biking and short walks. I can swim too.

How do you manage to keep facing forward every day?
I still need to work and earn a living to support my family. I still want to be able to ride my bike and take an occasional walk or hike. I would like to do Mt. Whitney again with my son.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I had to talk to my past self I would not have done as much running on hard surfaces nor as much train running, although those runs – Pier-to-Peak in Santa Barbara, Mt. Baldy, and the Badwater half-marathon were memorable. I played hockey and tennis in my teen years but I really think it was the miles of running in my 30s, 40s, and 50s that contributed to my condition.

California Coast Classic - Day 7

Today the riders traveled 88.2 miles, from Buellton to Ventura. Apparently the first part of the day was a challenge, because the riders at Rest Stop 1 were SERIOUSLY HUNGRY!! We could not make the PB&J fast enough!! It was a super busy morning!

Then, when we got to Ventura, we were reunited with our boys - and we were all super happy to see each other! They had an amazing week at Grandma & Grandpa's cherry farm, but we missed them!! 

Tonight the boys are sleeping in the tent with us - then on to the finish line tomorrow!!





Thursday, October 1, 2015

California Coast Classic - Day 6

Today was a loooong day. Believe it or not we took down our tent and set up the first rest stop of the day IN THE RAIN. But, unfortunately the rain and cool air didn't last too long, and soon enough it got hot. Our rest stop was on the verge of running out of water - and I had to beg a local resturant to refill our water jugs (thanks so much to Jack's in Old Orcutt!!)

After I made it to camp I helped ring the cowbells and check the riders off the checklist - so we could make sure everyone arrived safely. With 300 riders it takes several hours for them all to come in! 

Now it's time for dinner and bed. Excited to see my boys tomorrow! I miss them!!






Facing Forward - California Coast Classic Edition: Peggy

Facing Forward is a series that shares the lives of people living with arthritis and other invisible 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!

This special edition of Facing Forward shares the stories of the individuals involved in the Arthritis Foundation’s 15th Annual California Coast Classic – a 525 mile bike ride from San Francisco to Los Angeles.

Name: Peggy
Hometown: Studio City, CA
Diagnoses: tentatively diagnosed with RA or lupus
Age at Diagnoses: 45

Why is it important to you to participate in the California Coast Classic?
I had already ridden the CCC five times before I was diagnosed. I am one of those who did the ride the first time for the fun of it and then was converted to the cause because of the people I met and the stories I heard. A couple of years before my diagnosis, one of my long-time friends had her two year old diagnosed with JA and that pretty much clinched the deal for me.

What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I've faced is dealing with all the doctors appointments and all the unknowns. I don't have a clear diagnosis (is it RA or is it lupus? Who knows?!?) so my doctor checks and double checks everything. I think he really doesn't want to miss something that might give us a clearer sense of what we're dealing with. So I've had stress tests and echocardiograms and a pulmonary hypertension scare - which thankfully seems to be unfounded. I've had a couple of MRIs, one showed inflammation in my hand and wrist, while the more recent one showed a "perfectly normal" elbow. I had the usual year and a half of "try this medicine for 4 weeks and then come see me again." Nothing really awful in itself but the cumulative effect has been to have me second guessing how healthy I am all the time! Gets exhausting.

How has your diagnoses made it more difficult for you to stay active?
When I was first diagnosed and, really, until I'd been on the methotrexate for a few months, I had pain in my hands and wrists that sometimes seemed to radiate clear up to my shoulder. That made riding my bike...interesting! It also made cooking, sewing, playing the piano, using my computer mouse at work, and even driving my car an adventure. 

What are some of your favorite tips and tricks for staying active with arthritis?
The best "trick" I have for staying active is to commit to something important - like the CCC. While we try to ride year round, we definitely ride more n the spring and summer when we're actively training. It is easier to tell myself to just ride even if it hurts a bit because I know I want to be ready for the CCC. I may have to ride a little slower on a bad day or change the route a bit to make things easier on my hands, but I still ride because "I'm training." I also have a friend I walk with because if she's counting on me to show up, I do.

How do you manage to keep facing forward every day?
I have so much to be thankful for - a doctor who really cares, a supportive family, all the support of my Arthritis Foundation and CCC friends, medicine that works(!), and at the moment relatively inactive disease. So I focus on the positive. Even my "bad" days are better than they used to be!

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I was really blessed to already be involved with the Arthritis Foundation before I was diagnosed. I knew I was in for some challenges getting to a clear diagnosis and finding the right medicine or combination of medicines for me. But I think I would still say "take a deep breath and be patient." This is a marathon, not a spring - which is good 'cause I ride strong and steady, but not fast!

California Coast Classic - Day 5

Today the riders traveled about 60 miles from Cambria to Oceano (Austin had a malfunction with his Strava, which is why his record doesn't say 60 miles womp womp). I worked at rest stop 1 in Cayucos - then stopped by rest stop 2 for one of the famous tamales made for us by the amazing Wally's Bicycle Works in San Luis Obispo. 

After that I snuck off to a family friend's house in SLO - who graciously let me wash some of Austin & Michael's bike clothes (those things are gross! Sweaty and covered in chamois butter!! Ew!!) I also got some writing done that I had been procrastinating on, and then I met up with the boys at camp. 

Now we're getting ready for dinner. Then on to bed so we can stay strong for Day 6!!





California Coast Classic - Day 4

Today the riders covered almost 75 miles, from Big Sur to Cambria. It was a long day with a lot of climbing - but we can do it!! (I use the term "we" very liberally here!!)

The scenery today was breathtaking. One of my favorite parts of the day was stopping to watch the elephant seals. They look so fat and happy laying on the beach!! I wanted to join them! 

Instead we are camping in the American Legion parking lot - and I'm having a "glass" of wine out of my Nalgene bottle (because I am so classy!) It's been a long day, so I think it's time to sleep so we can do it again tomorrow!