Paying Medical Bills: Why Is It Sometimes So Difficult?

Sometimes it feels like just managing medical bills is a full time job!

Read more at RheumatoidArthritis.net!

Facing Forward: Mia

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: Mia    

Location: Texas

Diagnoses: SLE, RA, POTS

Age at Diagnoses: 36 after my second child was born

How are you currently treating your conditions?

Plaquenil, Sulfasalazine, Prednisone, Methotrexate, Remicade infusions, Propranolol, Vitamin D supplements, and yoga!

What are the biggest challenges you have faced since your diagnosis?

Accepting that I cannot accomplish everything I set out to do in the time frame I had initially planned. Realizing that I owe no one an explanation as to why I look better than I feel.

What are your favorite tips and tricks for managing everyday tasks?

Honestly, resting in between tasks helps me quite a bit. Trying to eat healthier and on time is another big one for me. Once I start crashing, regardless of the reason, there's no way for me to get all my spoons back, so to speak. Therefore, I have to stay on top of giving my body its basic human needs before attempting to accomplish anything else. In doing so, I am able to enjoy my day much more easily.

How do you manage to keep facing forward every day?

Easy: my motivation is my family. I want to be everything that I can and offer everything that I have to them. With so much to look forward to together, I know that every day is a new blessing.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

I would tell myself to realize the difference between living and functioning and to allow the diagnosis to free me from the dysfunctional functioning and lead me to learn how best to live now that I'm aware of what I'm up against.

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

My 9th RA Anniversary

I'm never quite sure how it's possible, but somehow it's that time of year again! The time when I realize that yet another year has gone by since I was first diagnosed with RA in June 2008. I have now been living with RA for nine years. I'm getting to the point where I've been living with RA for so long, that my life prior to diagnosis just seems like some sort of distant memory of my youth. 

I've come quite a long way in the past nine years. From not even being engaged when I was first diagnosed to just celebrating my sixth wedding anniversary. From being terrified about how I could possible be a mother with RA to my oldest son just turning five and my little dude already about to turn three at the end of July!

The challenges that I have faced as a mom living with RA have sparked my passion in helping generate resources and support for other moms living with chronic illnesses - so no one will have to feel as alone and unsupported as I did when I first decided to become a mom. Some of my favorite articles that I wrote this year continue my focus on pregnancy and parenthood with chronic illness:

• TNF Inhibitor Use in Pregnancy & Breastfeeding
• Managing Stress About Giving Your Kids Your Chronic Illness
• Babywearing for Parents with RA
• How to Entertain kids When You're Not Feeling Well 
• Talking to Your Kids About Having A Chronic Illness

My Mamas Facing Forward Facebook community (for moms and moms-to-be living with chronic illness) has grown to include more than 500 women from all around the world. I'm really excited to see this group continue to grow - and I've got plans in the works for additional resources for my mamas so please stay tuned!!  

Though writing has always been my happy place, this year I also stepped outside of my comfort zone to participate in several videos interviews - to put a real face on these issues. I did a series of interviews promoting awareness for Patient's Rising as well as a couple of videos for RheumatoidArthritis.net (misconceptions about living with RA and managing RA pain). I hope to continue getting more comfortable talking onscreen, as it offers another venue for spreading awareness and connecting to others. 

My advocacy work has been going really well and growing daily. This year I did a TON of traveling - to conferences, summits, meetings, advisory boards, presentations, and more! Since last June I've been to:

• Phoenix, AZ (Arthritis Foundation Juvenile Arthritis Conference)
• Philadelphia, PA (Arthritis Foundation Juvenile Arthritis Conference)
• Philadelphia, PA (Joint Decisions Empowerment Summit)
• Cherry Hill, NJ (PMRG Institute Research RoundTable)
• Denver, CO (Arthritis Foundation Conference of Champions)
• Washington, D.C. (American College of Rheumatology Annual Meeting)
• San Diego, CA (Janssen Immunology R&D Team Meeting) 
• Denver, CO (testimony in Colorado Congress on SB 17-203)
• Dallas, TX (Lilly Patient Steering Advisory Board)
• Washington, D.C. (Arthritis Foundation Strategy & Impact Committee Meeting and Advocacy Summit)
• Longmont, CO (AstraZeneca Staff Meeting)
• Philadelphia, PA (Health Union Connexcion)
• New York, NY (Pfizer RA Patient Global Advisory Board)
• Dallas, TX (Roche-Genetech Patient Advisory Board)

DUDE! Just looking at that list has me exhausted!! All of those events were very exciting and I learned so much from being involved - but I do have a goal to have a more reasonable travel schedule in the upcoming year!! (Check in next year to see if I was successful haha!)

In addition to the traveling I did for my advocacy work, I also rode my bike from San Francisco to Los Angeles in the Arthritis Foundation's California Coast Classic! I rode every single mile of the first six days and made it all the way to the 400-mile mark before riding a bit in the sag van. In the end I rode 467 miles over eight days, and did more than 25,000 feet of climbing. Many, many thanks to everyone who supported me on that crazy endeavor! Needless to say I'm not planning to ride again this year - but maybe someday! 

And, in what seems like an accomplishment by a different person from another lifetime, this year I also kept my environmental interests alive by co-authoring a textbook on international environmental law. After being diagnosed in the middle of law/graduate school, RA did force me to choose between starting the career I had always envisioned and having the family I knew I wanted - and it's obvious which one I chose! But it's nice to have a physical reminder in my hands that I am more than my RA, as well as a potential pathway back into the subject if I should choose that direction once my kids are older. 

It has certainly been a crazy busy year!! Going forward I hope to continue watching my family grow and finding ways to support people - especially mamas! - who are living with arthritis and other chronic conditions. 

From This Point. Forward.

RA Blood Type Survey

I'm always looking for opportunities to support research - because research leads to better understanding of diseases which leads to better treatment options which leads to better lives for all of us!

The Scleroderma Education Project is currently working with the University of Wisconsin to attempt to understand if there is any correlation between blood type and autoimmune diseases. The study involves an anonymous survey that is only 2 questions long:

(1) What is your blood type?

(2) What is your country of birth?

To have viable results, they need at least 1,000 participants per disease type. If you've been formally diagnosed with rheumatoid arthritis and would like to participate, you can do so here:

Rheumatoid arthritis blood type survey

They're also looking for respondents who have been formally diagnosed with:

Systemic lupus erythematosus (SLE) 

Psoriasis

Ankylosing spondylitis

To participate, you do need to know your blood type. This information should be available in your patient records, particularly if you've had a surgical procedure or a baby.

Self Care Stories in Arthritis Today Magazine

I'm honored that I was asked to share advice about self care for the newest issue of Arthritis Today magazine! Especially because I got to be featured alongside two other amazing bloggers. If you aren't already familiar with Six Hips & Counting and Arthritic Chick I highly recommend checking them out!

You can read the online version of the article here! 

Giveaway from RAre Hands Boutique!

When Kate was diagnosed with RA, she thought she would have to abandon all the creative things she loved to do, especially when her hands became significantly deformed due to the disease. But it turns out that nothing is further from the truth!

Since her diagnosis, Kate has become a strong believer in not letting RA define her life. To prove it, she recently launched an online jewelry store called RAre Hands Boutique - where she sells beautiful handmade jewelry that she has personally created, despite the damage RA has done to her hands. She also donates 10% of all of her proceeds to the Arthritis Foundation. You can read more about Kate's story in her Facing Forward interview.

I was lucky to be offered the chance to select one of her pieces (the gorgeous bracelet pictured!) and I love it! It definitely feels nice to look at my hands and feel good about them - a feeling I'm sure many of you can identify with!

Kate has generously offered to sponsor a giveaway - one lucky reader will have the opportunity to select a FREE item from Kate's collection!

You can enter the giveaway using this link: a Rafflecopter giveaway

A winner will be chosen at random on Monday, June 26th!! Best of luck to you all!!

Facing Forward: Kate

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: Kate

Location: Austin, TX

Diagnoses: Rheumatoid Arthritis

Age at Diagnoses: 21

How are you currently treating your conditions?

Currently I am taking Humira, which fortunately has done wonders for me. I also remain very active. I exercise a couple times a week. I am also an active stepmom and teach special education to elementary students.

What are the biggest challenges you have faced since your diagnosis?

I think the biggest challenge for me was the initial depression I experienced. I was a young vibrant person who fairly quickly had incredible pain and challenges. I did not trust my own body anymore. I mean come on?!?! Whose body attacks themselves internally? It sounded crazy to me.

Unfortunately my means of dealing with this was to ignore it, I think I hoped it would just all go away. I pushed through the unbelievable pain, sometimes it would take me 45 minutes just to get dressed in the morning. I would take up to 12 Aleve a day just to get through. I was only 25. Overtime my hands became incredibly deformed. The joints turned and curled, I became embarrassed I had ignored the problem and not taken care of myself.

Once I accepted my diagnosis and adopted a treatment plan that helped manage the pain and joint deterioration the emotional scarring began to heal. I began to see my diagnosis as a gift. I was given this because I could handle it. That is when I began to wonder how I could help others.

What are your favorite tips and tricks for managing everyday tasks?

There are many things people who see my hands are surprised I can do. I type, sew, bake, cook, make furniture, and of course create jewelry! I guess my only tip for managing tasks is if you really want to do it you will figure out a way. It may not be the way everyone else does, but you will still get to the same destination.

There are only two things I can’t do and that’s snap my fingers and high five, but I can always clap my hands and fist bump so everything is right in the world.

How do you manage to keep facing forward every day?

Doing the things I love keeps me facing forward each day. I love to create! Once I realized I could still do the things I loved, that those “limitations” others had put on me or that I had put on myself did not actually exist, it opened life back up. I knew then the only boundaries on my abilities and happiness was my own attitude, I decided to never approach anything again with “I can’t” but rather “How can I?”

If you could go back to diagnosis day and tell your past self one thing, what would it be?

Well first I would probably tell myself to stop being such a baby and accept a treatment plan, LOL.

Besides that I would let myself know that everything will be ok.

That with great struggle comes great reward. That the strength this disease will condition you for is enough to do and achieve anything you could ever want.

Every time you feel you are weak, every hurdle you have to overcome, every obstacle to your daily success is actually strength, tenacity, and endurance growing and building in your body and mind.

You control your own life; you’re the boss of you! Go Get It!

Do you have a blog you would like to share?

You can find my online jewelry store at www.rarehandsboutique.com or on Facebook. 

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

Facing Forward: Sarah

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: Sarah

Location: Austin, Texas

Diagnoses: Intractable chronic migraine with aura, migraine-associated vertigo, panic disorder, MTHFR mutation

Age at Diagnoses: 25

How are you currently treating your conditions?

I treat my conditions using a variety of methods, depending on my symptoms and their severity at any given moment. I practice yoga, own (and wear) a wearable ice hat, use tinted glasses designed for those of us with migraine, make sure to walk daily, take magnesium and B-12 supplements, and avoid enriched flour products. (The added folic acid is a big no-no for me.) I also use prescription medication when needed. 

What are the biggest challenges you have faced since your diagnosis?

Figuring out a way to earn a decent living while living with symptoms that make traditional work and a traditional work environment nearly impossible. 

What are your favorite tips and tricks for managing everyday tasks?

The one thing I can do that has the biggest impact on my quality of life is to respect my body's limitations, especially when it comes to time management. I understand that if I push myself too hard on one day, I will have to use the next day (or two!) to recover. I try to remember that and allow myself the time to rest when I need it. 

How do you manage to keep facing forward every day?

I have a wonderful support system in my husband. He's my best friend and an absolute joy to be around. Between him and my kids, I'm incredibly grateful for each moment. Loving them helps me focus on the positive. 

If you could go back to diagnosis day and tell your past self one thing, what would it be?

You're going to have to make some changes. Big changes. That isn't necessarily a bad thing. 

Do you have a blog you would like to share?

www.sarahhackley.com/blog  

I'm also active on FB, where I just launched a group for people with chronic illness who want to share practical tips and collaborate on ways to live well with whatever illnesses we're facing. Find me at https://www.facebook.com/SarahHackleyAuthor/

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

Thank You, Biologics!

After nearly ten years of experience with these medications, I want to share the impact biologic medications have had on my life.

Read more at RheumatoidArthritis.net.

Facing Forward: Kerri

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: Kerri

Location: Winnipeg, Manitoba (Canadian Prairies!)

Diagnoses: Asthma, ADHD + learning issues, uterine fibroids, retinopathy of prematurity, post-septic arthritis

Age at Diagnoses: Moderate persistent asthma (16), ADHD + learning issues (21), uterine fibroids (22), retinopathy of prematurity (birth-ish), post-septic arthritis (>1 month)

How are you currently treating your conditions?

I take multiple medications for asthma and medication for ADHD. I think exercise is really important for my ADHD as well, but when my asthma flares up, it can be hard to get that in--and hard to get back on track once things are better!

What are the biggest challenges you have faced since your diagnosis?

It's weird, because I am sure there are challenges I've faced, but I really don't focus on them. For me, diagnosis took awhile in all cases, except for in the case of the issues I've had since I was a baby and don't know life without. So getting the diagnosis and having an answer for what was going on was the challenge (ie. my "bronchitis" didn't go away because it was asthma; university was hard for me because I had ADHD and a learning disability that went undiagnosed until I was 4 years in and 21 years old; and no, 22 was NOT too young for the uterine fibroids that tried to kill me and necessitated 5 blood transfusions!) and the getting it sorted out to the extent it could be was the biggest challenge. Otherwise, I focus on the positives, and try to work WITH what I've got rather than working against it--especially in the case of ADHD.

What are your favorite tips and tricks for managing everyday tasks?

With ADHD, getting the stuff I want to accomplish done can be tough! I've been using the Bullet Journaling technique for over a year now, and it's the only thing I have used relatively consistently other than google calendar, and it fits my brain better! It also doesn't have any guilt attached when I don't use it, because there are only boxes to fill that I make myself! 

How do you manage to keep facing forward every day?

Focus on the "good things"--a phrase Jay Greenfeld, one of my professors in university, signed his e-mails off with! Both he AND this phrase, mostly the simplicity of it, really changed my perspective about a LOT of things.

If you could go back to diagnosis day and tell your past self one thing, what would it be?

This is a speed bump, not a roadblock. You will have experiences in life and make friends--BEST friends-- because of your diagnoses that you would NOT have had otherwise!

Do you have a blog you would like to share?

Kerri on the Prairies

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

Colorado Passes Law Restricting Step Therapy!

As part of my whirlwind of a completely crazy spring, you might recall that I went down to Denver a few times to testify on a piece of legislation at the state level concerning step therapy. For those who don't know, step therapy is a practice used by insurance companies that requires patients to try and "fail" lower-cost medications before the medication actually prescribed by their doctor will be approved. 

Although we didn't manage to achieve every point we were advocating for, I'm still excited to announce that Senate Bill 203 was signed into law by Colorado Governor John Hickenlooper on May 2, 2017! This important bill stops insurance companies from requiring patients to go through a step therapy process if they've already gone through a step therapy process with their current or former insurer. This will increase access to needed treatment for many patients - not just arthritis patients! - by limiting the application of step therapy. Not to mention making many patients' lives a whole lot easier!

I'm proud to have been a part of the process and hope to continue speaking up on important issues for people living with chronic illnesses!!

Read more about SB203 on the Arthritis Foundation Advocacy Blog!

Managing Stress About Giving Your Kids Your Chronic Illness

Raising kids is stressful enough. But parents living with chronic illnesses may face the added concern of passing their own diseases on to their kids. In my newest post for Mango Health, I share my own perspective and the insights of four other moms living with chronic illnesses.

Read more at Mango Health.

Facing Forward: Vicki

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: Vicki

Location: Ontario, Canada

Diagnosis: Psoriasis

Age at Diagnosis: elementary school, around the age of 10

How are you currently treating your condition?

I go intermittently for phototherapy, but mostly I control my psoriasis with diet. Avoiding gluten, dairy, chocolate, nuts, beans, corn, bananas, and eggs makes a night and day difference for me! I identified most of my trigger foods through a blood test for IgG antibodies. Diets to help psoriasis (and I imagine many other autoimmune conditions) are incredibly individual, but I'm happy to have found something that works well for me.

What are the biggest challenges you have faced since your diagnosis?

During my last bad flare I was recommended for methotrexate, an immunosuppressant, which would have seen me have to quit my job as a lab scientist (as I work with high level pathogens and cannot be on these types of medications). That was a scary time. I never realized my condition could have such a profound effect on all areas of my life, prior to that. Aside from that experience, the ever-present pain and itching of my skin lesions is mentally draining, adding into the fatigue that comes with many chronic autoimmune conditions.

What are your favorite tips and tricks for managing everyday tasks?

Anything that reduces the pain and itching is top of my list for everyday management. I have a super involved moisturization routine that I follow everyday, which helps prevent drying and cracking. Using creams with menthol helps temporarily reduce itching. I also practice Vipassana meditation. Keeping my skin as happy as possible and having tools to manage anxiety and feelings of hopelessness allows me to get on with the other aspects of my day!

How do you manage to keep facing forward every day?

Having the pleasure of becoming a patient advocate for both psoriasis and psoriatic arthritis keeps me facing forward! There are days when I feel run down and ready to throw myself a pity party, but I know that I could also spend that time answering someone's question, or sharing in someone's journey. The passion to create a safe community for people like me is what keeps me motivated. 

If you could go back to diagnosis day and tell your past self one thing, what would it be?

I would tell myself to enjoy my life and to try and overcome my ego at a younger age (a tall order when you're in your formative years!) I would also tell myself "yes, it does get worse, and yes, you do survive." So much of my childhood and early adolescence was spent agonizing over the "what ifs" of my disease. Knowing what was to come would have been disheartening, but it would have also allowed me to let go of those fears (and it would have given me a total appreciation of the almost decade when my skin really wasn't that bad. But everything is relative, and hindsight is 20:20!).

Do you have a blog you would like to share?

I write for PlaquePsoriasis.com.

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