Wednesday, February 22, 2017

“Where oh where is my libido?” or The Time I Decided to See a Sex Therapist

Deciding to see a sex therapist was a very weird feeling, because it seemed so taboo and there’s a certain kind of negative stigma associated with needing “sex therapy.” But I had run out of options and didn’t know where else to turn, so it seemed worth giving it a try. Almost a year later I can say that it was a very good decision – for me personally, for my relationship, and for my family as a whole.

Friday, February 17, 2017

Facing Forward: Lauren (A Caretaker's Perspective)

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: Lauren
Child's Name: Oliver, 2.5 years old
Child's Diagnosis: Juvenile Idiopathic Arthritis-Oligoarthritis (both knees and both ankles) 
Age at Diagnosis: 18 months

How are you currently treating your child's condition?
We are currently giving Oliver methotrexate injections once a week. We are on week 11 and hoping they kick in soon. Since he is still uncomfortable most of the time he is also on Naproxen (Aleve) twice per day. When all of that seems not to work we use a tiny dollop of Deep Blue Rub, which seems to help.
 
What are the biggest challenges you have faced since your child's diagnosis?
We have had a very hard time trying to figure out a good medication regime to help him. We started with just Naproxen and that failed in just a week. We also tried diet changes for a few months with no luck. We then started doing steroid injections, which actually worked for about 4 months until only 5 weeks after the ankle injections he was swollen and painful again. We were terrified to put him on methotrexate, but his rheumatologist reassured us and helped us understand how much it could help. Seeing Oliver not able to walk has been heartbreaking and exhausting. 

What are your favorite tips and tricks for helping your child manage everyday tasks?
Treating Oliver the same as his brother has been vital. When we change things he senses it and becomes agitated. When we start to notice he is uncomfortable (hard to tell since he isn't talking much yet, but he gets fussy) we give him either the next dose of Naproxen, do an Epsom salt bath, or the Deep Blue Rub lotion. Catching pain quickly is important. 

As a caregiver, how do you manage to keep facing forward every day?
Since the day Oliver started limping in January of last year, we have learned quickly that facing forward and continuing to live this life to better him is so important. Our faith in God has sustained us. On Oliver's worst and best days we look to the cross for God's mercies, encouragement, and promises that His plan is good. Our family is tighter knit than we were before the diagnosis and we have learned to appreciate each moment and the small things.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
To breathe. Things are changing a lot but breathing is important. My little man needs a mommy with her head on straight and a brave face. Pray pray pray. 

Do you have a blog you would like to share?
Yes! I update Oliver's blog as much as I can. 

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

Thursday, February 16, 2017

Chronic Illness & Intimate Relationships – An Interview with Dr. Logan Levkoff

For the past few years, I’ve been writing openly about the impact of chronic illness on intimacy and relationships – so I was excited when I was recently offered the opportunity to interview Dr. Logan Levkoff. A recognized expert on sexuality and relationships, you may have seen Logan on the reality show Married at First Sight. Logan is dedicated to perpetuating healthy and positive messages about sexuality and relationships, and she recognizes the added struggles a chronic illness can bring to the table.

Wednesday, February 15, 2017

My BioExperience – Touring The Lab Where Remicade Is Made

When I went to Philadelphia in October for the 2016 Joint Decisions Empowerment Summit, I shared a little bit about my experience on the BioExperience Tour. When I got home, I had a chance to think a little bit more about what I had learned and try to digest the science. It occurred to me that other patients might find an explanation of the science behind developing biologic medications useful/interesting - so I wrote an article about it! 

Matt Iseman Wins Nearly $1 Million for the Arthritis Foundation

On Monday, I went down to Denver to watch the season finale of The New Celebrity Apprentice with a group of Arthritis Foundation volunteers. I'm not generally a fan of reality TV - partly because, as a mom of small children, I don't exactly have time to watch it! But while I hadn't been watching the show the whole season, I had been following what was happening because one of the contestants was Matt Iseman, who was competing on behalf of the Arthritis Foundation.

For Matt the cause is personal, since he lives with rheumatoid arthritis himself. I first had the pleasure  of meeting him at the Joint Decisions Empowerment Summit in 2015, where he hosted our live web chat on breaking down barriers between patients and rheumatologists. Then, just last month, he hosted the Autoimmune Disease Patient Panel I participated in, where we both got to share our experiences as RA patients with immunology researchers. Even when meeting him fairly briefly, it's easy to tell that Matt is an all-around great guy - lots of fun and always upbeat. So I was very excited to see him use the reality show as a platform for spreading awareness about arthritis. 

In the finale, Matt, who is the host of American Ninja Warrior, was competing against Boy George, a much better known celebrity. By the time the finale happened, Matt had already raised $100,000 for the Arthritis Foundation along the way. In the final episode, I thought Matt did a fantastic job of using the platform he had been given to share the realities of life with arthritis by sharing his own story and his reason for his commitment to the cause. I mean, Tyra Banks said "rheumatoid arthritis" on TV!! That has to help with spreading awareness!! It was also really fun to see some of my friends from the California Coast Classic make a cameo on the episode. 

In the final challenge, Boy George raised $445,925 for his charity, Safe Kids Worldwide. But Matt managed to raise $573,329 for the Arthritis Foundation. Sounds like the shows' host, Arnold Schwarzenegger, had been concerned about Matt's ability to raise funds. But, when Arnold complimented Matt on a job well done, Matt reminded him that he didn't do it alone and thanked his Arthritis Foundation family. And that certainly made me smile!

In the end, Matt was named the New Celebrity Apprentice, winning an additional $250,000 for the Arthritis Foundation. Raising nearly $1 million dollars is amazing - that's about what the entire California Coast Classic brings in for the foundation, and it's the biggest fundraiser in the country! But, perhaps more than the money, I'm excited that Matt had a platform to educate ordinary viewers about the realities of life with arthritis. Making arthritis "visible" will have a huge impact on the lives of people who live with it every day. Thank you so much, Matt!!


Monday, February 13, 2017

The 5 Love Languages – A Tool for Improving Communication in Relationships

Communication is an essential part of maintaining a healthy relationship – it’s how we share our thoughts, ideas, feelings, and desires with our partners. But, in a relationship where one partner is living with a chronic illness like rheumatoid arthritis, communication is likely even more important.

Friday, February 10, 2017

Facing Forward: Brittney

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: Brittney
Location: Pennsylvania
Diagnoses: Cerebral Palsy, Arthritis, Chronic Pain, Anxiety
Age at Diagnosis: Birth, 16, 18, 21

How are you currently treating your condition?
Medical marijuana without a doubt has been a life saver and game change - and is the primary way I wish to treat myself. Lately I'm all about discovering natural things to treat myself and caring for my mental health, because I think that how healthy you are mentally really affects your body. Just getting support from the online community has been super helpful to me as well.
 
What are the biggest challenges you have faced since your diagnosis?
Honestly, you lose a lot of people from your life when you get diagnosed, and then as you progress and the ebb and flow of your new life sinks in to everybody that's very hard. But I really struggle with the unpredictability of having an illness. That's the hardest part for me. 

What are your favorite tips and tricks for managing everyday tasks?
It depends what tasks and what you're able to do, honestly. I have tons of tips and tricks. My biggest piece of advice is to get a planner and make it fun - it will help you manage your spoons.

How do you manage to keep facing forward every day?
The support of the online community - really just knowing whatever I go through I can share and find someone who has been there.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would just tell myself your world isn't ending. In a lot of ways it's opening up and just beginning.

Do you have a blog you would like to share?
My Life As Brittney

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

Friday, February 3, 2017

Facing Forward: Jimmy

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: Jimmy
Location: Raleigh, NC
Diagnoses: Gout
Age at Diagnosis: 21
 
What are the biggest challenges you have faced since your diagnosis?
Quality of life. Ever since I was diagnosed with gout at an early age, each year continues to be a physical challenge for me. Even though I take preventative medicines to help control my uric acid level, I still continue to have gout flares. In my twenties I would have a flare 3-4 times a year. Now I have then 12-14 times a year. Over the years when I would have more gout attacks the abuse to my legs, arms, fingers, or any other area that was affected has made it harder to stand, walk, and grab things without pain.

What are your favorite tips and tricks for managing everyday tasks?
I'm a sales manager and need to be with my sales team in the field daily. I know that rest is key each night to ensure I can walk without pain the next day. I also know that eating the right foods and drinking plenty of water helps me have better days. It's now the new year and the resolution for 2017 is to start to work out again.

How do you manage to keep facing forward every day?
My family and employees that I work with help motivate me to get more healthy and find out answers to get my gout controlled. I'm 47 years old now and the wear and tear on my body has limited me to not be as outgoing. Now that I have found the right rheumatologist and have been introduced to the right treatments, I feel my attitude and outgoing personality will be back soon. It has been a long journey to get to this point. 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I would have continued to search for the right doctor to help me get through this awful condition. Even though I was diagnosed with gout and had high levels of uric acid, the doctors would only treat it as an acute attack and not give me direction on how to control it going forward. There were years that went by that I would just go into a doctor's care and ask for a prednisone taper down pack. Again, from my twenties until early forties I only knew how to stop the attack, but did not know how to control going forward. 

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

Thursday, February 2, 2017

Chronic Care Collaborative - Petition for Transparency in Health Care Costs

The Chronic Care Collaborative is a collaboration of health organizations representing a wide range of chronic diseases dedicated to improving access to quality, affordable, and integrated healthcare for the 1 in 4 Coloradans living with a chronic disease. They are currently collecting signatures on a petition demanding more transparency in health care costs:
As a person living with a chronic condition or caring for someone with a chronic condition, before purchasing a health insurance plan, I deserve to know what medications are covered by my plan and how much I will have to pay for the prescription drugs that keep me and my family healthy.
It's time to address the issue of out-of-pockets costs for prescription drugs. Join Coloradans across the state in telling policymakers to stand up for people living with chronic conditions and demand transparency in health care costs now. 
 


Patients Rising Voices of Value - Interview in Women Magazine (and free subscription!)

A few months ago, I was interviewed by Patients Rising as part of their "Voices of Value" series. Patients Rising is a nonprofit organization:
committed to directly engaging the patient community, along with physicians, health policy experts and allied healthcare professions to develop realistic, solution-oriented discussions so those impacted with cancer and other critical medical challenges will amplify our collective voice and create lasting impact on the future of heath care in the United States and ultimately, around the world.  
I'm very excited that my story, recently published both online and in print in Women magazine, can help illustrate the importance of patients having access to the medications they need! You can read the story online here.

Also, in honor of Rheumatoid Awareness Day - which is today, February 2nd! - TheRAConnection is giving away free subscriptions to Women magazine! So you can get a free yearlong subscription by filling out the form here. Both TheRAConnection and Women magazine offer educational content, inspiring stories, useful tips, and a community where individuals with RA can share information, support, and inspiration.