Facing Forward Series Draws to a Close

Some of you may have noticed that last Friday came and went without my usual Facing Forward feature. The reason is that I've decided it is finally time to retire the series and move on to something else (mainly my work on the new Mamas Facing Forward website!!)

But before I move on completely, I wanted to take a minute to reflect back on the last two and a half years spent interviewing individuals living with various chronic illnesses. The Facing Forward series was intended to share the lives of people living with invisible chronic illnesses. In addition to spreading awareness, I wanted to help all of us see how we are similar and how we are different - and to remind everyone to keep moving forward, because none of us are alone!

Since my very first interview published on March 8, 2015 (my own!), the series has featured over 100 other individuals living with invisible chronic illnesses - as well as a handful of caregivers for children or spouses living with chronic illnesses. These individuals represented more than 110 different diseases and conditions, including (but not at all limited to): ankylosing spondylitis (AS), Celiac disease, COPD, Ehlers Danlos syndrome, endometriosis, fibromyalgia, Hashimotos thyroiditis, HIV, juvenile idiopathic arthritis (JIA), lupus (SLE), lyme disease, myalgic encephalopathy (ME, formerly known as chronic fatigue syndrome or CFS), postural orthostatic tachycardia syndrome (POTS), psoriasis, psoriatic arthritis, Raynaud’s disease, rheumatoid arthritis (RA), scleroderma, Sjogren’s syndrome, Type 1 diabetes, Type 2 diabetes, and ulcerative colitis. The series also touched on many co-morbid conditions that are often present with chronic illness, such as anxiety, depression, or issues with sleep. 

Despite the fact that more than 100 different people answered the same set of questions, I think what surprised me most were the underlying themes of how we all we all work to keep facing forward, in spite of whatever our personal health issues may be. While most of us agree that it is important to give recognition to feelings of grief or depression, we also tend to make a real effort to focus on the positive aspects of life and practice gratitude, mindfulness, and thankfulness as much as we can. Our families, spouses, children, friends, pets, and loved ones also help us face each new day. 

Many of us also find support by connecting with others who are living with the same or similar illnesses - as well as personally benefiting from advocacy work and providing much-needed support to each other. It is absolutely no easy task to keep facing forward every single day while living with a chronic illness, but I think the overall lesson to be learned here is that we are stronger if we work together - lending a hand to those of us who are struggling more at any given time. 

To everyone who participated in this series over the last two and a half years, I want to offer my most heartfelt thanks for helping to share the importance of continuing to face forward!!

This is What Rheumatoid Arthritis Looks Like

In almost a decade since my diagnosis, I've been lucky to have the opportunity to meet a lot of others who are also living with RA - both online and in person. And while we have a lot in common, one thing I've learned is that everyone has their own unique experience with RA. 

That's why I was very excited when Healthline offered me the opportunity to be part of their new video series This is What Rheumatoid Arthritis Looks Like. I got to share my own personal perspective of what it's like to live with RA - as well as shining a light on the added challenges faced by moms living with chronic illnesses. 

The series also gave me - and gives you! - the opportunity to take a peek into the lives of two other amazing individuals living with RA, whose lives are so similar and yet so different from my own! One is Arthritis Ashley, a blogger I've been aware of for years but never had the chance to interact with until I happened to recently meet her at a patient summit in New York City! I've always loved her positive approach to living with chronic illness, as it's one I embrace myself! The project also introduced me to an author and blogger I hadn't heard of before, Daniel Malito. I'm excited to get to know his work, and I always love having more representation for men who are living with RA. You can check out all three of our Healthline videos describing what RA looks like here. 

My own video is also included below, and I have to say that I'm pretty happy with how it turned out considering all the chaos in my house the day the film crew joined me! I also want to add the disclaimer that the film crew did an amazing job making me look like the "perfect" mom. They took footage of me taking my boys to pick up our farm share, cooking with local organic produce, and the whole family playing cooperatively together with trains. But for all the other moms out there, please know there was a lot of chaos and screaming in between these shots - and 20 minutes after the film crew left we were all eating frozen pizza for dinner and watching monster trucks on YouTube. Just want to keep it real haha! ~;o)

Can Working in a Cold Environment Cause Rheumatoid Arthritis?

A recent study from Sweden suggests that people who work in cold environments may face an increased risk of developing RA.

Read more at RhuematoidArthritis.net.

Is Rheumatoid Arthritis Hereditary?

The good news is that the short answer to this question is no. You can’t pass RA directly to your children. However, the long answer to this question is a bit more complicated. While I've addressed this issue before, this article includes some updated statistics from the American College of Rheumatology. 

Read more at NewLifeOutlook RA!

That Time I Did An Interview About Vibrators

I haven't seen all of Grace and Frankie, but the couple of episodes I have seen are pretty entertaining. In one episode, Grace (Jane Fonda) uses a vibrator that required so much effort she gives herself a case of carpel tunnel syndrome. Based on this experience, she collaborates with Frankie (Lily Tomlin) to design a vibrator that accommodates women with limited mobility, chronic pain, and rheumatoid arthritis. 

Healthline wondered what real women with RA might have to say about a product like this - and I obligingly gave my two cents on the subject!!

Read more: We Asked Women with RA to Review the Vibrator from Netflix's 'Grace and Frankie' - This is What They Said

Facing Forward: Rick

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: Rick

Diagnoses: type 1 diabetes, RA, AS

How are you currently treating your condition?

I use an insulin pump, Continuous Glucose Monitor (CGM), Rituxan for RA, medications to prevent diabetes complications, and Several NASIDs for AS.

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

I have had type 1 diabetes since 1974, and the biggest challenge has been mental, not physical.  The 24/7/365 nature of diabetes leads to mental health challenges.  For me, the main issue has been depression. 

With RA and AS the main issue has been the loss of the ability to work.  I loved my job, and when health prevented me from continuing, I was devastated.  For me, I had so much of my identity wrapped up in what I did, that I lacked direction and grounding when I stopped work. 

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

I have to recall how fortunate I am every day.  When I was diagnosed with diabetes, I had no expectation that I would live beyond 30-35 years.  For that reason when I was told I had I have RA, I understood how fortunate I was to be alive and still working at age 43. 

Certainly, my mother who passed at age 46 from complications of type 1 diabetes after 23 years did not have the chance to be diagnosed with RA.  I ask myself when I am suffering from RA or AS, what would my mom have given to have the opportunity to live as long as I have?  I imagine she would have given a lot. 

How do you manage to keep facing forward every day?

My wife of 40 years keeps me going forward.  But our sons and grandchildren are my joy.  Nothing beats grandchildren to keep a person facing forward.  When you are around kids who are active and laugh, you cannot help but face forward.  

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

If I were to go back to me at age 17 when I was diagnosed with diabetes, I would tell myself to get therapy sooner.  I spent a long time and wasted many years being afraid of and depressed about the complications of diabetes.  During treatment, in my 40s my life improved so much.   I wish I had not wasted the time between my 20s and 40s.

With RA, I would tell myself not to be afraid of powerful biologic medications.  It took me three years to inquire about the pain and stiffness I was experiencing.  With my first biologic medication, my physical health improved amazingly.  When people ask me what they should do, I always say get to your biologic as soon as possible. 

Do you have a blog you would like to share?

I blog at RADiabetes and CreakyJoints.  I also write occasionally at HealthCentral and for TUDiabetes.  I also host the annual RABlog week starting the last Monday of September on RADiabetes.  

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

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: Delaware (U.S.)

Diagnoses: ME/CFS and Lyme; both of my sons had ME/CFS also - one recovered after 10 years & the other is still sick and also has 3 tick infections.

Age at Diagnoses: I was 37 when I got sick; 38 when I got diagnosed. My sons were 10 and 6 when they first got sick.

How are you currently treating your conditions?

I have researched relentlessly to find treatments for ME/CFS, since there are no officially recognized treatments in the medical community. I also went to see (and took my sons to) some of the top ME/CFS doctors in the nation to learn about various treatments. All of that has resulted in a large number of separate treatments that we have found effective. In our experience, nothing helps a lot, but each treatment helps a little and that adds up over time to improved functionality and quality of life. My younger son is now fully recovered, and my older son and I live fairly normal lives, which is quite unusual with ME/CFS.

Briefly, we treat Orthostatic Intolerance (OI), an integral part of ME/CFS, with medications including Florinef and beta blockers, plus increasing fluid and sodium intake and monitoring heart rate. We take medications (technically tricyclic antidepressants but used in tiny doses and for different purpose) to correct the sleep dysfunction that is a part of ME/CFS. We have helped to normalize or rebalance our immune systems using inosine, low-dose naltrexone, glutathione injections, and multiple herbal antifungals, antibacterials, and antivirals. I also took prescription antivirals (alternating Valtrex and Famvir) for about 5 years to treat underlying, reactivated viruses like EBV and HHV-6. We have also treated methylation with folate supplements and B12 injections.

For Lyme disease and other tick infections, we are under the care of an LLMD (a Lyme specialist). We both took various antibiotics for over three years to treat Lyme and bartonella but have both switched to the Byron White herbal protocol in recent years, due to chronic yeast overgrowth (for which we now both take prescription antifungals, in addition to loads of probiotics and herbals). We have found the herbals to be surprisingly potent.

We are also under the care of a brilliant dietician who also has a MS in Biochemistry. She recommended a Paleo diet (no dairy, grains, or sugar), which has been helpful to us. The Paleo diet helps with energy, methylation, reducing inflammation, and helping to control our yeast overgrowth. She has also recommended many supplements to us that we now take, for a wide variety of purposes, including immune support, controlling yeast overgrowth, methylation support, cognitive dysfunction (aka brain fog), energy, and more.

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

Actually, the biggest challenge was getting a diagnosis in the first place. I saw dozens of doctors and had hundreds of blood tests over the course of a year, all while I was completely debilitated, and no one could tell me what was wrong. I know I am lucky - many people with ME/CFS go 5, 10, or even 15 years without an accurate diagnosis, but that first year of uncertainty was horrible.

Since my diagnosis, the first few years were the most challenging, especially two years later when both of our sons also got ME/CFS. With three of us debilitated and often homebound, we struggled with depression. We had no effective treatments in those days, either.

One challenge that continues now, 15 years later, is that my extended family doesn't understand our illnesses. Most of them have stayed in patterns of behavior that include denial and avoidance. That has been very hurtful and has permanently damaged some of my relationships with them. 

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

My daily nap is sacred! Without it, I would feel awful by 4 pm every day. I nap after lunch every day - no exceptions! - and that gives me the energy and recovery I need to enjoy the evening.

It's also critical to ask for help when you need it. I was fiercely independent, so that was a hard lesson for me to learn. Now, if I wake up feeling awful, I call it a Plan B day. Instead of forcing myself to do things I don't have the energy for, I go through my list and consider what can be postponed and what I can ask for help with. I'll text my husband to ask him to pick up something at the store, for instance.

For anything active, I wear my heart rate monitor - it helps me to stay within my limits to prevent post-exertional crashes.

How do you manage to keep facing forward every day?

I'm a naturally positive and optimistic person, so moving forward each day comes easily for me, but I have learned a lot of important lessons through living with chronic illness. 

I learned to focus on small moments of joy every day by keeping a Joy Journal. Things like sitting on my back deck, reading a good book, looking up at the clouds, or listening to the birds in the trees bring me joy. I have tried to pass this onto my sons.

Going through these challenges together has brought us closer as a family. Though our sons are now grown and in college, we remain very close and enjoy each other's company. 

Helping others has also been a big part of the healing process for me and for our family. I started a local support group for families whose kids have ME/CFS, fibro, Lyme, and related conditions, as well as a Facebook group for parents and another one for teens. All of these groups have not only helped others - which feels good and makes our own struggles feel worthwhile - but have also provided support and friendship to me, my husband, and our sons.

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

Tough question, since there are still no miracle cures or amazing treatments for ME/CFS. I'm not sure I could have gotten to where I am today without going through the challenges I did. I think I did all the right things after my diagnosis - read everything I could about my disease, searched for others in similar circumstances, and tried every treatment I could find.

I guess I might tell myself that I needed to balance acceptance and hope - accepting my current situation while still holding out hope for a better future. I did eventually learn that. I think I had to go through some of the struggles to get to the point where I appreciate what I have and can help other people.

Do you have a blog you would like to share?

Living with ME/CFS

http://livewithcfs.blogspot.com/

My blog features posts on effective treatments for ME/CFS and Lyme, updates on the latest research, posts on our experiences, and inspirational/coping posts, as well as fun stuff like movie and TV reviews.

Also, if you are a parent of a child with ME/CFS, FM, Lyme, EDS, or related conditions, you are welcome to join our Facebook group - watch for a FB message after requesting to join because that's how we confirm membership:

https://www.facebook.com/groups/164665786958252/

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

Life with Rheumatoid Arthritis: A Living Anatomy Lesson

Life with rheumatoid arthritis can be a living anatomy lesson - and next time I think I’d rather take an anatomy class!!

Read more at RheumatoidArthritis.net!

Facing Forward: Jayne

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: Jayne

Location: Australia

Diagnoses: Dysautonomia and HEDS (Hypermobility Ehlers Danlos Syndrome)

Age at Diagnoses: 44 and 45

How are you currently treating your conditions?

Medication wise – I am on beta blockers 3 times a day and midodrine.  I have also recently started taking sertraline to try to even out my blood pressure issues.  I take a sleeping tablet most nights. I also take Vit D, Magnesium, and Vit C daily for my muscle issues and Mobic when I get joint pain that endures.  Diet wise I drink salted water every day and have salt on pretty much everything!  I do not drink alcohol.  I drink decaffeinated coffee and tea since caffeine interferes with my adrenaline issues. I do gentle exercise – I haven’t been able to do cardio despite trying for a period of 6 months.  My cardiologist believes my adrenaline issues cause my bp and heart rate to drop, which makes sense in terms of why I feel extremely fatigued after a lap in the pool!  High intensity exercise also exacerbated my adrenaline issues making me a lot more jittery generally and prone to adrenaline related symptoms.  Since giving up cardio exercise, everything has calmed down a lot.  

I’m unable to sit or stand for long periods since my blood pressure drops a lot and I cannot talk for more than an hour either since I get the same reaction.  So I have had to limit my work to about 25% of what I managed prior to getting sick and get creative on what I can do.  I now spend a lot more time at home because of my lower work capacity and inability to socialize but my body is steadier and I get to spend a lot more time with the people that matter to me!  Having a steady body definitely helps with a steady mind – overall I feel calmer than I have in a long time.

Sleep remains an issue for me.  Due to my adrenaline issues I am a prolific dreamer (and nightmarer – yes, I see monsters!) and I suffer greatly from additional fatigue if I haven’t slept well which is often.  Sleeping is something that is an ongoing battle for me.  It helps if my day prior has been calmer – I definitely see a relationship with the quality of my sleep and how busy I’ve been in the run up to it.  I also wake up every day with varying degrees of headaches/migraines – sometimes they go, sometimes they don’t but again there is a relationship here with how much I did the previous day.

Having an adrenaline problem makes my condition a little tricky to manage.  Adrenaline revs you up to do more but I get payback big time if I overdo.  I try to live my life in what I call “the middle zone” so I don’t poke the bear!  It isn’t always easy to get it right. 

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

I think one of the biggest ones has been work.  Up until I got sick, I was the major breadwinner.  Adjusting to living on a lower wage and finding things that I can physically do has been really challenging. Getting people I work with to understand what I can and can’t do has also been challenging – many a time I’ve become over-committed because someone inadvertently thought I could do it (either because they thought that I used to do these things or they think it’s an easy task).  As time has moved on and they’ve seen the impact of those actions, those expectations have changed which is good.  I did have an income protection policy that was meant to support us should I find myself in this position but that was withdrawn a year ago and I’ve had to get a lawyer to help fight for it to be reinstated.  None of that has helped our financial position.  We’ve had to move to a smaller house, move the kids to new schools.  The work I now do is ad-hoc and largely freelance – it’s nice work but I earn about a quarter of what I used to bring home and it’s not regular income.  We’re surviving but things were meant to have been easier when faced with this sort of predicament – particularly in terms of the planning I did with having an insurance policy as a backstop.  Getting sick is never easy, let alone with financial issues laid over the top.  It’s been a big adjustment all round.

Socially it’s also been very challenging.  People don’t understand the drain that social events take on those with chronic illness and they still want to see you.  But it’s not been possible to keep up with the pace of those and, having declined quite a few, the invites slowly stop coming! Which in one way is a good thing but in other ways a bad thing.  It comes with the guilt that you can’t see people as much as you’d like.  It’s a really hard one to juggle.

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

Rest!! Listen to your body and don’t overload yourself.  Take regular breaks and back off doing too much.  Know your limits!  Mine is working up to 2 hours per day quietly from home or a 1-hour talking meeting/socializing.  Any more than that and I have overdone it!

How do you manage to keep facing forward every day?

I think despite everything we’ve gone through as a family over the last 3 years of my illness, we’ve become a lot closer.  I am more present at home.  Our pace of life is slower and calmer. Which mentally has helped adjust to this new life I now live.  I’m lucky in that my medication also helps many of symptoms.  This and pacing myself means I only experience the odd day or part of a day where I feel dreadful.  I know that I bounce back.  I don’t dwell on what I used to be able to do – what good does that do?  I focus on what I can do and what the future might hold.  I have a few projects on the go that are about finding a different way to work and earn an income.  I’m excited by those. 

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

I would say don’t be persuaded by doctors that your symptoms mean something that is inconceivable to you.  For a good 12 months I was told what I had was anxiety and panic disorder and I believed them.  I believed everything I had done in the run up to my symptoms appearing was overly stressful and was the reason for my predicament since I was told that this was the reason.  It wasn’t.  Stress didn’t help but it wasn’t what caused my body to malfunction overnight.  A simple visit to some hot outdoor springs did that.  If something changes in your body that is hard to explain, I encourage you to look back over the activities you were doing in the run up to your symptoms.  If I had done that it would not have taken me 7 months to realize I was significantly heat intolerant and had dysautonomia.

Do you have a blog you would like to share?

Yes my blog is www.thedailymanic.com.  I write about how those with chronic illness can live life better.  What I write about is also relevant for anyone wanting to slow down and escape the rat race, which effectively is what I’ve had to do to manage this condition I have.

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

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.  

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!!

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.

Savvy Cooperative

A friend of mine - who lives with arthritis herself and does amazing volunteer work for the Arthritis Foundation - just launched a company called Savvy Cooperative to help connect patients with researchers, product designers, and others to help influence which problems will be solved! The brand new company is already winning awards, and I'm very excited to watch it grow and see where it goes.

I highly recommend checking it out and signing up for their mailing list - as a healthcare consumer you can get rewarded to provide valuable input!

Check out Savvy Cooperative here or follow them on Facebook or Twitter!

Managing RA Pain

Pain is one of the main invisible symptoms of life with RA, so I've contributed to a RheumatoidArthritis.net video discussing different ways to manage pain.

What do you think? How do you manage pain?

Misconceptions About Living With RA

May is Arthritis Awareness Month - so I've contributed to this RheumatoidArthritis.net video discussing common RA misconceptions

What misconceptions about living with RA have you encountered?

Patient's Rising - Voices of Value

As those of you who follow me on Instragram may already know, it's been an extremely busy spring for my family! Our recent crazy life is the reason it has taken me so long to share the videos interviews I did for Patient's Rising, a non-profit group that advocates for patients rights. I'm honored to have had my story featured, and I truly hope that it will help bring awareness to others when it comes to important issues like access to care. (Also shout out to my friend Chantelle, another amazing RA advocate, who is also featured in these videos!) 

And, on second thought, perhaps these videos are even more timely right now - considering everything that has been going on with healthcare legislation over the past week!

Rheumatoid Arthritis - Patient Access to Care 

Rheumatoid Arthritis - The Patient Voice

Rheumatoid Arthritis - Mariah's Story

Rheumatoid Arthritis - Chantelle's Story 

May I Have A Prescription for Patience, Please?

Living with a chronic illness necessarily means that you aren’t a stranger to doctors, nurses, needles, X-rays, procedures, etc. However, simply having an abundance of experience doesn’t mean it is always easy to interact with medical providers – especially in situations where you don’t feel well. 

Read more at RheumatoidArthritis.net!

Facing Forward: Megan

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:  Megan

Location:  Australia

Diagnoses: Fibromyalgia, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Asthma

Age at Diagnosis:  28 for the Fibromyalgia and ME/CFS. I’ve had asthma since I can remember…

How are you currently treating your condition?

At the moment I’ve come off all of my prescribed medications (except for my asthma medication) because I’m pregnant. For me diet hasn’t really made much of an impact on my Fibromyalgia or ME/CFS. The treatments I find most useful are regular acupuncture treatments for the pain, pacing techniques (limiting what I do and trying to have scheduled rest breaks), meditation, and heat in the form of showers and baths. Before becoming pregnant, testosterone supplements were also helping my pain levels.

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

Since the Fibromyalgia and ME/CFS, I’ve really struggled to maintain any sort of balance in my life. For the first few years I was unable to do anything I was doing before the symptoms hit. I had to stop working, stop exercising and my life seemed to rotate around medical appointments. I didn’t have the energy to do much socializing. I’ve slowly built some form of balance back into my life but working out a way to do this that lets me live a simple, sustainable, and meaningful life has definitely been a challenge!  

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

Pace yourself and share the load with those around you if you can. I decide what’s most important to me on any given day and prioritize those tasks. If I have enough energy left over after they’ve been completed (with rest in between them), then I’ll consider doing other things. I’ve found it very useful to let go of unrealistic standards I may have been setting myself and to ask for help whenever I can. 

How do you manage to keep facing forward every day?

I try hard to focus on the positive things that are going on. Even on my worst crash day I’ll find one little thing that I can focus on as a positive. It may be time spent cuddled up with the cats, or being able to sit outside in the sun and just soak up the warmth. These days, it can be just feeling my little girl moving inside of me and remembering that this illness hasn’t taken away all of my dreams!

I’ve also been focusing on helping others. I write on my blog when I’m able to (I’ve been less consistent lately because of everything going on) and I’ve written a children’s book to try and help explain invisible illnesses to those around me. Remembering that I can still make a difference, even if it takes me much longer than I’d like to, helps me keep facing forward every day.

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

Stay strong and remain focused on what you can change. Try not to worry about all the things that may or may not be part of your future.  

Do you have a blog you would like to share?

Yes, I blog over a liveken.com about my life with chronic illness and about living a simple, sustainable, and meaningful life.

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

Facing Forward: Katie

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:  Katie

Location:  Boulder, CO

Diagnoses:  RA (rheumatoid arthritis)

Age at Diagnosis:  6

How are you currently treating your condition?
Enbrel and Arava

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

When I was a child, my RA was not very well controlled, as we cycled through many different treatments. I was able to get my symptoms under control when I started taking Arava at age 21.  My biggest physical challenges were definitely when I was a child.  As an adult, my biggest emotional challenges have been concern about the aging "infrastructure" of my body.  I recently had arthroscopic hip surgery, and it looks like that hip will be headed for replacement at some point.  

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

Because my disease is well controlled at this point, managing everyday tasks is fairly easy for me.  If I do start to have a flare, it's important for me to address it quickly, typically with Prednisone. 

How do you manage to keep facing forward every day?

Staying physically active has been very important to me.  When I was a child, my parents shared their passion for the outdoors with me.  They brought me along on their adventures, tailoring them to my abilities.  This meant taking me backpacking and carrying me for parts of the hike, skiing slowly with me and only as much as I could, etc.  I now have the opportunity to share my passion for the outdoors with my children, which is extremely rewarding and provides additional motivation to keep moving! 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Because I was so young when I was diagnosed with RA, it didn't affect me the way it would an adult.  For me, it was just the way things were.  I try to carry this attitude forward when facing new challenges.  As an example, I developed OA in my foot a few years ago.  I was extremely upset about it.  After complaining to some friends about how I was feeling sorry for myself, a friend of mine said to me "Katie, even if you had no feet, you would find a way to do all the things you love to do!"  This is absolutely true. 

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