Friday, April 28, 2017

Facing Forward: Bree


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: Bree
Location: I live in Australia. Currently living in a country town about 2.5 hours out of Melbourne. I was born and raised in Perth Western Australia.
Diagnoses: I have been diagnosed with Tuberous Sclerosis, Lam Lung disease, Hashimoto thyroid disease, High blood Pressure, Meniers Disease, Anxiety, Osteoarthritis. I think that’s all. Tuberous Sclerosis and Lam lung disease are both rare diseases.
Age at Diagnoses: TS I was diagnosed at the age of 26 when my youngest child was also diagnosed with it. Lam lung disease was 4 years ago. Thyroid disease 11 years. Meniers 2 years ago. Osteoarthritis yesterday. High blood pressure somewhere in the middle of all of this. Anxiety about 11 years ago.

How are you currently treating your condition/conditions?
I am currently on NDT - natural Desiccated thyroid extract or armor for the thyroid. I take blood pressure medication daily and I am currently on Lyrica and increasing it for the pain of the osteoarthritis.Oh! I forgot I also have fibromyalgia, which the Lyrica was initially prescribed for. I also take an over the counter drug call panadol osteo which also helps with the pain. I also take B12, Seliuim, zinc, and I have changed my eating to not including grains, legumes or gluten. I have coffee with milk and that’s about it. I walk my dogs at least once a day, and I walk in the pool at least once a week. Working on doing more of that.

What are the biggest challenges you have faced since your diagnosis?
Biggest challenge is having to give up work due to the fatigue and the pain.

What are your favorite tips and tricks for managing everyday tasks?
I hope for the day I am pain free. Walking has helped me a lot. When in Europe last year, not having to do the mundane of housework cooking etc. I was able to concentrate on me. Unfortunately, we don't get that choice in our day-to-day life.

How do you manage to keep facing forward every day?
I am very lucky even though I have several diagnosed conditions each is fairly mild, except for the osteoarthritis, which is very painful. I consider myself lucky that I can get out and walk even though I am in pain. I am blessed.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Take each day as it comes as you never know where it’s going to lead you.

Do you have a blog you would like to share?
My blog is 3 Sisters Abroad.

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

Friday, April 21, 2017

Facing Forward: Brynn

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: Brynn
Location: Mukilteo, Washington USA
Diagnoses/Age at Diagnosis:  
Juvenile Spondyloarthropathy diagnosed at age 13 (in 1994), but not broadly treated and moved into a Fibromyalgia Diagnosis with possible Mixed Connective Tissue Disease, until a confirmation in 2013 of Seronegative Akylosing Spondylitis (AS). 
Raynaud’s Phenomenon age 13 
Cardiovascular Syncope age 16 
Endometriosis age 16 
Ovarian Cysts age 16 
Migraines age 18 
Osteo-osteoma of Right Humerus age 18 
Fibromyalgia age 22 
Cervical Degenerative Disk Disease C1-C7 age 25 
Degenerative Disk Disease L1-L3 age 25 
Lhermitte’s Phenomenon age 29 
Seronegative Ankylosing Spondylitis age 32.

How are you currently treating your conditions?
Current Treatment for Conditions: It’s taken more than two decades, but I finally have a regimen that seems to treat most of my symptoms and provide some slowing of disease progression for the AS. My early doctors used many NSAIDS (non-steroidal anti-inflammatories) which compromised my kidney function to the point where I can no longer take them without serious kidney complications. 

I also have allergies to Sulfasalazine and Methotrexate, so my options are a little limited for the treatment of the Ankylosing Spondylitis. Currently I have two weekly injections of Enbrel 25mg SC to slow the disease progression. 

For pain and treating additional symptoms of my multiple diagnoses I take a low dose of Morphine Sulfate ER daily for chronic pain, Diazepam 5 mg at bed and at upon waking during night to aid sleep, Clonidine 0.1 mg daily to maintain slow and even heart rate, Tizanadine 4mg mostly at bed, but also throughout the day as needed for muscle spasms, and Intranasal Ketamine 10 mg up to four times per day for breakthrough pain (between infusions). There are lots of other PRN (or as needed) medicines I have on hand for migraine pain, infections, nausea, but I don’t count those as treatment medications. In addition to daily medicines, I use a TENS Unit over my lumbar spine for the pain associated with the degenerative disk disease. 

I’m also part of a Ketamine infusion program at Seattle’s Swedish Hospital for pain control. I’m currently on a treatment plan that calls for two days of infusions once every three months. This program has made the biggest positive impact on my conditions, allowing me to significantly decrease the daily medications with the highest risks, and to feel good; though it’s been challenging to get regular scheduling from the hospital team. 

Along with medicines and medical devices, I’ve found that ample sleep on a specially fitted bed/mattress is extremely important. After having a Tempur-pedic mattress for over a decade, my husband and I moved to adjustable base beds. The change allows me to sleep with my body in different positions based on what sites might be flaring in my body, without the issue of having springs or coils putting pressure on pain points. This is something we just made the change to a couple of months ago, and it’s made an incredible impact. If you are having trouble sleeping, I strongly consider reviewing your mattress and it’s support system. Adjustable bed foundations have gotten much cheaper and provided noticeable relief! 

Staying mobile is also extremely important. I have a dog, who is trained for service, who needs exercise. We take short walks twice a day. I also have an in-home rowing machine that I use four days a week, more if I can tolerate it. For a long time it was counter intuitive for me to be active, and it’s still hard to work on while you’re in pain, but I find it is incredibly important for your body and mind to be active. 
  
What are the biggest challenges you have faced since your diagnosis?
I was young when my condition started, after a traumatic fall. Since my medical issues began in earnest while I was still a minor, many of my medical decisions were made without my knowledge. I didn’t even know about my J. Spondy diagnosis until I was going through my medical records for my disability hearing in 2012, nearly 18 years later. 

The biggest challenges come with knowing my symptoms and disease progression could’ve been different, had I known the extent of my illness and been able to act on it. It takes a lot to move forward from that. For me, the diagnosis has been the easy part. Struggling through twenty years of symptoms and surgeries without an answer was extremely difficult. 

Then there are the challenges that come with being a “professional patient” and a mother. Trying to balance your own health and keep a family running and healthy, after losing the ability to work is also difficult and can be extremely overwhelming.

What are your favorite tips and tricks for managing everyday tasks?
Coming up with a “common language” in our family was essential to running things smoothly. After reading Christine Miserandino’s “The Spoon Theory,” we use “spoons” to describe how much energy something takes or how many chores we have around the house and how much we can do without running on empty. A common language works in our family, and it helps us to plan ahead. We plan ahead with school clothes, meals, after school activities, doctor’s appointments - anywhere we can.

Our family works to get together on Sunday to review the family calendar, where we keep all dates and engagements for all family members. Having one calendar is so much easier than getting school project surprises or meetings mixed up. 

I think it’s also important to ask for help when you need it. I’m not always great at that, but I keep trying. I think it’s also important to know what you’re good at and what you need help doing.

How do you manage to keep facing forward every day?
You’d think after more than 20 years I would have an easy way of facing forward daily, but it’s something I struggle with. I think most people would find it hard to always look on the bright side.

That doesn’t mean that there aren’t things to help keep you focused on the good. I earned my Associates Degree just before my 18th birthday. I always worked, and identified as an earner, which made moving to disability very difficult mentally. 

When I could no longer work, I had to find ways to keep my mind sharp. One of the things I do to stay positive is to keep learning. I volunteer when I can at my daughter’s school as an art docent, so learning new things is essential for me to keep moving forward in teaching children about art. We live in such a big world, yet sometimes it is easy to be pulled into the details of our diseases. I find that continuing to learn keeps that big world open. I keep learning and I teach what I can to others when I am able. I wouldn’t be able to do that without the support of my family and friends. 

Also, humor! It is essential. Being able to laugh, even in the hardest of times has been one of my greatest assets.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
So many different diagnoses, so many days, but my Seronegative Ankylosing Spondylitis diagnosis came after struggles with infertility and finally having my daughter - it was finally knowing what was wrong after more than 30 surgeries and 20 years of mystifying doctors. If I could go back to diagnosis day I would tell myself that things are going to be hard, but remember that you can do hard things. 

I would remind myself to look back on all the days, good and bad, tell myself there will be more days, good and bad, but that my track record for making it through those days has been 100%, and it’s not time to stop that streak.

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

Tuesday, April 18, 2017

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. 

Friday, April 14, 2017

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.  

Monday, April 10, 2017

Product Review: Liberty Lotion's Limitless Lotion

I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. As stated in my own product review policy, my reviews will always be honest.

LibertyLotion's Limitless Lotion is an all-natural, non-GMO lotion with no artificial preservatives or colors. It is advertised as an effective CBD alternative “for your hard to get pain” that won’t leave a greasy residue or lingering scents. I was intrigued, so I jumped at the opportunity to review this product.

While I will agree that the product doesn’t leave a lingering scent, I do think that the initial scent is quite strong. But while I don’t generally like products with a strong scent, I actually quite enjoyed the smell of Liberty Lotion. As far as I can tell, the scent is mostly lavender, but I think there’s also a hint of something else that I couldn’t quite identify (despite reading the ingredients list). In any event, though I do feel that the scent is a little bit strong – at least at first – instead of finding it overpowering I actually found it very pleasant and relaxing. A bit of aromatherapy too!

As claimed, Liberty Lotion does absorb extremely quickly, so you can put it on and go about your business without having to worry about getting it on clothes or bedding. This does mean, however, that it isn’t a very good option if you are trying to incorporate massage into your pain management routine – unless maybe you used it at the very end of a massage. I will say that a little lotion can go a long way. For me, one or two small pumps was generally enough lotion to cover the area on my body where I wanted to focus. I think the pump is actually a great feature, as it allowed me to get exactly the quantity of lotion I wanted without having to waste any. And the good news is that I didn’t think it was too hard to push with my finger, despite my rheumatoid arthritis.

Of course, the ten-thousand-dollar question is this: does it actually help with pain? To be perfectly honest, there were mixed reviews on this subject in my house. I tried using Liberty Lotion to help with my joint pain, putting the lotion directly on my knees or wrists. I also tried rubbing it on my chest when I was dealing with a particularly bad bout of costochondritis (inflammation of the joint located in the rib cage). I found the experience to be generally relaxing, and overall I think the lotion had a good impact on my skin. Unfortunately, I didn’t find that Liberty Lotion made a huge deal of direct difference in my level of pain. Though, to be fair, I was dealing with rather high levels of pain. This was particularly true with the costochondritis, which I was having trouble controlling even with heavy medication. So that level of pain may have just been too much for any sort of topical treatment.

My husband, on the other hand, has found Liberty Lotion to be very helpful for his low back pain. He’s been asking me to help him rub it on his low back almost every night, and it really does seems to help him be in less pain. Though he does have some issues in his spine, I think a fair amount of his back pain is muscular – which makes me wonder if Liberty Lotion works better on muscle pain than it does on joint pain? All in all, I’m hoping to give Liberty Lotion another try when I am dealing with a less intense level of pain – that is if there’s any left at all when my husband gets done with it!

Friday, April 7, 2017

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.  

Friday, March 31, 2017

Facing Forward: Mandy

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:  Mandy
Location:  Savannah, GA
Diagnoses:Rheumatoid Arthritis, Central Sensitivity Syndrome (C.S.S.) with indications of Fibromyalgia & Chronic Pain Syndrome, and Dis-Embarquement Syndrome
Age at Diagnosis: 50

How are you currently treating your condition?
I am taking 200mg/day of Savella for fibromyalgia, 15mg Methotrexate for the RA, and 5-10mg prednisone to ease additional foot and hand pain caused by the RA. Other than this I try to manage my pain through a regular schedule and taking care to not overdue extracurricular activities. Daily gentle movement and stretches to keep the joints and muscles moving helps keep the pain at bay.
Avoiding inflammatory foods such as wheat and sugar is VERY helpful.
What are the biggest challenges you have faced since your diagnosis?
I am quite a social person and had been very active up to that point. Giving up these activities and learning to say "not this time" was extremely difficult for me. Thankfully, my husband is excellent at reminding me of the consequences of over activity. I do go out occasionally but try to keep that to once a week.

What are your favorite tips and tricks for managing everyday tasks?
1. Remember that the world will not stop if you don't get something done.
2. Allow others to be a blessing to you. Let them help. When they ask what they can do, give them a few options. Maybe make a list ahead of time of things they can do to help. Let them do things even if not really necessary. Maybe just ask them to come sit with you, watch a movie, play a game, have tea/coffee.

How do you manage to keep facing forward every day?
I have found things I can do that don't exert a lot of energy. I picked up crocheting again after many years. I can't count the afghans I have made for other shut-ins, babies, wedding gifts. And now am actually making some money making afghans for people. Blogging has been such good therapy for me. Writing about my pain has helped me deal with it and at the same time helps others understand what I am going through and what I am learning through it. These things keep my mind off the pain and gives me something to look forward to.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Enjoy every minute of your life, right where you are. Don't look to the past or what you hope happens in the future. Every day is a precious gift from God. Don't waste it.

Do you have a blog you would like to share?
I blog at Leaving a Legacy  www.ggmandy.com (GG stand for godly grandmother/girlfriend/guide). I also post about my crocheting at http://legagyphotos.blogspot.com

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

Friday, March 24, 2017

How to Talk to Your Kids About Having a Chronic Illness

If there’s one word that parents likely hear about 600 times a day it’s this one: why? But while answering the never-ending stream of a kid’s questions is exhausting for anyone, the questions can be more complicated if you are a parent living with a chronic illness.

Why do you have to take that medicine? 
Why are you going to the doctor again?
Why can’t you play with me right now? 
My newest article for Mango Health has five ideas to help you navigate talking to your kids about your illness.

Facing Forward: Heidi

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:
--> Heidi
Location: 
--> Seattle, WA
Diagnoses: Rheumatoid Arthritis, two rare genetic muscle diseases (Autosomal Dominant Centronuclear Myopathy and Marie-Charcot-Tooth Disease) along with some “mysterious” GI, heart and neurological symptoms. I think they’re all related, but hey, what do I know?
Age at Diagnosis: 
--> 39 and 42 respectively

How are you currently treating your condition?
--> There is no treatment for my genetic muscle diseases except to manage my neuropathy pain, which I do with gabapentin. As for RA, I started off with methotrexate injections and prednisone for flares. After about six months of losing my hair and no significant improvement in symptoms, I asked to try a biologic. I started out on Humira which worked marvelously for about three months, after which time my symptoms came roaring back. My doc then switched me to Enbrel. The same thing happened with this med, but I did give it a longer try.  After about a year of marginal results, my doctor tried me on Orencia. I’ve now been on Orencia for about a year with somewhat successful results. I’ve been able to keep my prednisone down to 10 mg/day for the most part and really only deal with significant flares when the weather changes or if I’m sick or fairly stressed. 
Besides medication, I started following the Whole30 diet on and off. Although I lost about 10 pounds during the first month, I didn’t see a significant change in RA symptoms. I did feel better, however, in a general sense, so I’ve tried to eliminate dairy, grains, and sugar from my diet permanently, although that’s been harder to do long term than I thought (especially as I stare down a box of Tagalongs girl scout cookies as I write this!) Finally, in the diet and medicine category, I just recently started taking high dose Vitamin D. Yes, I am deficient, which many people living in Seattle are, but that’s not why I take it. There is actually some really interesting research on using Vitamin D as a way to treat leaky gut, which, personally, I suspect as the reason for many of our autoimmune issues these days. As far as exercise goes, I’d love to say I do it, but I’d be lying. I use to be fairly active, running half marathons and ragnars, but no longer do so due to pain and fatigue. I was actually training for a ragnar when my knee began to hurt more than usual, which led to my RA diagnosis. I really miss running, so I try to get out a walk or hike as often as I can, especially during the summer. 
What are the biggest challenges you have faced since your diagnosis?
--> Hands down: fatigue. I have a pretty high pain tolerance, so I am able to push through it most of the time, but I have to say the fatigue has kicked my butt. I have to take a nap nearly every afternoon and sometimes in the morning too. This sometimes means coming home after dropping off my son at school and crawling back in bed for another hour or two. Even though I hate what this does to my productivity, doing so seems to “reset” my body, allowing me to get through the rest of the day. The other really frustrating challenge is my now horrible memory and brain fog. Losing 15 IQ points and literally failing the short-term section of my neuropsych evaluation was a huge blow to my ego. I’ve always prided myself on being smart and capable, so this issue was really hard to swallow. I’ve tried to make accommodations which have helped, but sometimes I still end of going to the store three times to get everything I need. 

What are your favorite tips and tricks for managing everyday tasks?
--> I try to give myself extra time, ask for help (which I never used to do), create lists, and I use a ton of ice and heat for pain. I also splurged and got myself a membership to Massage Envy.  Giving myself grace to rest when I need to also really helps. 

How do you manage to keep facing forward every day?

--> I like to make fun of myself. Keeping a sense of humor is very important! For instance, I have “Dory” sign in my house and an “I love Naps” t-shirt I wear often. I also find its important to have close friends to support me who truly understand chronic illness. I have a few friends who have issues themselves, so we support each other a lot. My faith, family and helping others also plays an important role in my well-being. To keep a sense of purpose, I work part-time as the women’s pastor at my church. In this role, I’m able to focus on supporting others in their pain and triumphs which helps take the focus off me and keeps things in perspective. I also keep my hands active (cuz my doc said I had too) by flipping furniture as my body allows. I find great satisfaction in this creative outlet and it brings in a little extra money too. This hobby has also turned into a design and faith blog called “Meaningful Home” which can be found at www.meaningfulhomeinteriors.com. Here I explore ways to bring meaning and beauty into your life through home décor & design. Honestly, both these endeavors were not on my “career plan” whatsoever, but having them has been the life-giving inspiration I need to keep facing forward. Being useful through work is very important to me. Finally, I would be remiss if I didn’t mention how my son and husband keep me going. I couldn’t ask for a more supportive, amazing husband. He helps around the house a ton and puts up with my complaining when it gets out of hand sometimes. He is incredibly understanding! My son, Caleb, is the light of my life and the reason I keep looking forward to the future. He was a true gift from God and is my little prayer warrior. He is always praying for me! 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
--> Ok, not one, but three things: 1) It’s going to be ok. 2) Be your own medical advocate. I can’t emphasize this enough. Doctors are humans too, they make mistakes and they don’t know everything. I’ve found that patient boards, conferences, and research have helped me diagnose and treat my conditions more successfully than without. 3) God can and will use this diagnosis for good if you let Him. 

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

Thursday, March 23, 2017

TOTAL March Madness!!

Maybe there's another reason they call this month "March Madness," because this month has been crazy busy!! Those of you who follow me on Facebook, Twitter, or Instagram may already know that I've been doing some really exciting things recently when it comes to advocacy! So before I leave on a two week trip with my family tomorrow, I wanted to give a quick update!

The month started out with a quick trip to Dallas, where I sat on a Patient Steering Advisory Board for Lilly, providing insight on potential new programs for RA patients. It's exciting to see pharmaceutical companies paying more attention to the patient voice, and hopefully being involved in this sort of thing can help improve things for all of us in the future. 

I flew straight from Dallas to Washington D.C. for the Arthritis Foundation Strategy & Impact Committee Meeting the following day. This committee reports to the Arthritis Foundation Board of Directors and we are charged with helping make sure the Arthritis Foundation's recent transition and re-branding results in a true outcome driven organization. We're working to make sure the Arthritis Foundation is having the greatest meaningful impact on individuals living with arthritis and their families, and I'm really honored to represent the voice of patients on this committee. 


I was able to stick around Washington D.C. for two more days to attend part of the Advocacy Summit. I always love the opportunity to connect with others who are living with RA - and it was great to get to see some of my favorite people! The advocacy goals this year were (1) to ask our Congresspeople to join the Congressional Arthritis Caucus, (2) to make sure the Department of Defense maintains funding for arthritis research, (3) and to ask our Congresspeople to safeguard our interests when it comes to drafting new healthcare legislation. 

In particular, we're concerned about what happens to people with pre-existing conditions, the possibility of lifetime caps on coverage, the ability of kids with JA to stay on their parent's insurance plans until they turn 26, and overall affordability of healthcare. Unfortunately, I didn't get to stay for all the meetings on the hill. (Remember my past life when I got a law degree and a masters in environmental policy? I had to get home to finish a book I've been working on!) But I did get get to meet with Colorado Senator Bennet - the day after the ACA replacement legislation was introduced, no less! So that was exciting. 





Last week, I turned my attention to legislation at the state level, as there was a step therapy bill being introduced in Colorado. 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. SB 17-203 set out to require an override for situations where the step drug is problematic for patients and also to protect patients from having to go through the step therapy process all over again if they have to change insurance plans. 

Since I recently experienced step therapy first hand, I went to testify at the Committee meeting at the state capitol in Denver. If you're interested, you can check out my op-ed for Cybermed News, which is basically the same argument I made in my testimony. Though the bill did pass through the Committee that day (and, in fact, passed through the Colorado Senate today) unfortunately some amendments were made that makes the bill less useful for the patients affected. But as the bill heads over to the House, patient organizations like the Arthritis Foundation and the Chronic Care Collaborative continue to fight for improvements. 



Then (remember, I told you this month is madness!!) I hopped on a plane to Philadelphia for the Health Union Connexcion Conference! I've been working with Health Union since RheumatoidArthritis.net launched in 2013. Though I work primarily on their RA site, many of my legal articles have been published across their other platforms, such as MultipleSclerosis.net, HepatitisC.net, COPD.net, CrohnsDisease.com, and LungCancer.net. This conference was an excellent opportunity to meet many amazing advocates in person, to learn from each other, and to brainstorm how to keep moving forward. 


Though it has been really exciting to be involved in all of this, I must say that I'm really looking forward to spending some time with my family in Hawaii and California for the next two weeks! Heaven knows I could use a vacation!!! And hopefully when I return I'll be rejuvenated enough to hop back in and keep fighting for better outcomes for patients living with chronic illnesses.