Tuesday, June 27, 2017

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:


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


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.

Monday, June 26, 2017

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

Friday, June 23, 2017

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.  

Friday, June 16, 2017

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?
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.  

Wednesday, June 14, 2017

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.

Friday, June 9, 2017

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


Thursday, June 8, 2017

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!

Wednesday, June 7, 2017

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.

Friday, June 2, 2017

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.