Friday, August 18, 2017

Facing Forward: Alice

-->
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: Alice
Location: Ireland
Diagnoses: Osteoarthritis; Degenerative Disc Disease; and Degenerative Joint Disease of the spine.
Age at Diagnoses: 47

How are you currently treating your conditions?
I am currently treating my condition with a combination of lifestyle changes including walking 3 miles 3 times per week and attending aqua aerobics once per week. I also use a lot of meds, including painkillers, muscle relaxers, nerve dampers and anti-inflammatories. I attend physiotherapy once per week and practice daily range of  motion exercises. I use daily supplements also: turmeric, fish oil, glucosamine, and vitamin D supplements. I attend weekly pain psychology appointments and monthly pain management and orthopedic appointments. I have had a lot of steroid injections, facet joint injections, and nerve root blocks both lumbar and cervical spine. I have had lumbar surgery where I had a discectomy and decompression of L5/S1 and spur removal and am now preparing for fusion of cervical spine.

What are the biggest challenges you have faced since your diagnosis?
I think the biggest challenge I have faced since diagnosis has been trying to find acceptance of my condition. I have seriously struggled with this. I was a very active person juggling family, work, social life, and looking forward to enjoying an early retirement with my husband. This diagnosis and the constant demands that it puts on me have changed me from the person I was. I have had to quit working, driving, and socializing. I have become very dependent on my family now. I miss my old self.

What are your favorite tips and tricks for managing everyday tasks?
My tips are to accept that you can no longer do certain tasks and to ask for help with the things you struggle with.

How do you manage to keep facing forward every day?
I began to focus on the things that I can do and not so much on the things that I can't. I rediscovered my love of sewing and recently started an Angel Gown Program in my local town. This has given me a renewed sense of purpose and a feeling that I can still make a difference. I try to keep it in the day and not attempt to look too far forward.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
To stop smoking earlier and to take care of my back.

Do you have a blog you would like to share?
I don’t have a blog, but here is my Angel Gown Program

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

Sunday, August 13, 2017

Product Review: DrugStars App


As stated in my product review policy, my reviews will always be honest.

I recently received an email with the following idea: Imagine if every dose of medicine taken worldwide generated a donation to better healthcare. That is the vision of the DrugStars global movement. The statement certainly perked my interest, so I set out to learn more.

DrugStars is a global patient movement founded by Claus Møldrup, who holds a PhD in pharmacy and previously worked as a professor of social pharmacy at the University of Copenhagen. The DrugStars app was launched in Denmark in January 2017. It has recently expanded to the United States and United Kingdom and it's available for Apple and Android

The app enables patients to earn “stars” every time they take their medication as agreed with their doctor. Patients can also earn stars by reviewing their medications and signing up for news on surveys and clinical trials. The stars can then be donated to patient charity organizations, who receive real money in exchange for the stars. The app is free for patients to use - donations are sponsored by private companies.

The app tries to make it “fun” to take your medications, but has a serious intention: to change healthcare through the use of large amounts of anonymous data representing the voice of real patients. This patient insight data is made available as open source for non-profit patient-focused scientific research and on commercial terms to commercial organizations for well-defined patient-important purposes.

Once you download the app, you register each of your medications and the day/time your doctor instructed you to take each of them. After that it's super easy! You get a reminder on your phone whenever it's time for a dose. Once you take your medications, you simply tap the top button to collect your stars. Participation also earns you tickets to healthcare raffles, such as a Spafinder gift card. When you have collected at least 50 stars, you can donate them to the charity of your choice.

I don’t generally have a lot of use for medication reminders. I was diagnosed with Hashimoto’s at the age of 5, so I’ve been taking medication almost every single day of my life. At this point, meds before bed is simply part of my routine. However, my pregnancy has required the addition of some supplements that have to be taken at odd times. I currently have to take an iron supplement twice a day – but to make sure the iron is properly absorbed I have to take the supplements away from meals and not at the same time as my prenatal vitamin – which leaves me taking medications at least three times a day right now. With the kids out of school for the summer my schedule just hasn’t been consistent, making remembering to take everything properly a real challenge. So I actually have found the DrugStars app to be very useful in reminding me to take ten seconds for my meds a few times a day!

I do like that the app allows you to decide where to donate your stars, but I wish the choices were a bit more specific. There are 12 categories to choose from – rheumatic diseases (i.e. “support associations that aim to prevent and relieve the consequences of rheumatic diseases”), mental illness, cancer, diabetes, asthma and allergies, headache disorders, heart diseases, digestive disorders, dermatological disorders, stroke, kidney diseases, and liver diseases. Beyond that, the app doesn’t actually name the charities in question – and I couldn’t find that specific information on the website either. It would be really nice to know which charities are actually receiving these funds and have an opportunity to learn more about them. This may be part of the intention of the app, because after making my last donation I did get an email from DrugStars saying that I could go to the charity's page within the app and touch “become a member.” However, I personally couldn’t find that feature within the app (here's what the charity's page looked like within the app for me).

I also wish monetary impact was a bit easier for users to determine. You can easily see how many stars you have personally earned, how many stars have been donated to a particular charity category, and the total value of donations given by DrugStars overall – but figuring out your individual impact or the amount received by the charity category of your choice isn’t as upfront. I’m assuming the reason for this is that the impact is actually quite small at the individual level (if you look in the FAQs you’ll find that one star represents just 1 cent) and I imagine they don’t want users to be discouraged. Still, I personally think it would be better to be more upfront with this amount, perhaps while emphasizing the impact that can be had by having so many users – particularly ones like us who take so many meds!! Users can see the total amount donated by DrugStars clearly on the main page, and I think it would also be beneficial for users to see how many other people are using the app. I think knowing that you are part of something much bigger would help make the value of micro donations seem more tangible.

Overall, I think DrugStars is a very interesting concept and it will be interesting to see how they move forward from here!

Friday, August 11, 2017

Facing Forward: Cheryl


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: Cheryl
Location: Kirkland, WA
Diagnoses: Rheumatoid Arthritis and Gastroparesis
Age at Diagnoses: 20

How are you currently treating your conditions?
For rheumatoid arthritis, I take a biologic medication along with a DMARD (disease-modifying antirheumatic agent), which is supposed to help improve the effectiveness of the biologic. I also focus on protecting my joints during my daily activities by modifying my approach to them, as well as wearing splints as needed. For gastroparesis, I see a GI doctor along with a naturopath and acupuncturist to help my motility; at times I’ve been able to control it with simple dietary changes, but at other times I’ve needed medication. To manage both these chronic illnesses, I’ve found it crucial to see a therapist as well, to cope with the stressors that go along with these diseases.

What are the biggest challenges you have faced since your diagnosis?
The biggest challenge for me has been the fact that these diseases don’t have a clear trajectory; I like to be able to plan my life in advance, which is impossible health-wise since I don’t know when either of my diseases is going to flare up. The second biggest challenge has been balancing my role as a mom with my disease management, particularly when it comes to sleep and rest. As my son has gotten older, this aspect has gotten a bit easier, however!

What are your favorite tips and tricks for managing everyday tasks?
I focus on either changing up the items I use, changing my approach to the task, or finding workarounds. For example, instead of opening jars by hand, I use an electronic jar opener. If I don’t have the opener available, however, I can change my approach to the task so that I minimize strain on my joints - I do this by using my bigger muscles and “whole arm movements” rather than using just the small joints in my hands (which are more affected by my RA). Workarounds are crucial for me, as they allow me to avoid tasks altogether; these include asking for help, grocery delivery, and a housekeeping service. Overall, I find that building in time for self-care and taking rest breaks is also important, regardless of which other approaches I’m using.

How do you manage to keep facing forward every day?
I recently took a mindfulness course, which I found very helpful because it taught me how to focus on the present moment rather than getting consumed about future worries and anxieties. It also helped me cultivate a sense of gratitude for what I have, regardless of the limitations imposed by my diseases. I started a gratitude journal. I also find that my weekly sessions with my therapist are essential for helping me face forward, along with quality time with my family.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
When I got diagnosed with rheumatoid arthritis, I was actually relieved as I had previous felt that something was definitely “wrong” in my body, yet was told by many healthcare providers that I was “just anxious.” That said, I would tell myself to not take for granted the times that I feel good. I didn’t understand that the disease would likely have lots of ups and downs over time; I thought that I would simply take medication for the rest of my life and feel better. I was overly optimistic when I got diagnosed, and so if I could go back in time, I’d urge myself to be a little more cautious in my optimism.

Do you have a blog you would like to share?
My blog is The Enthusiastic Life, where I share tips for daily living with rheumatoid arthritis, as well as tips for pediatric occupational therapy (my job field) and a few other fun topics.

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

Wednesday, August 9, 2017

6 Things People With RA Wish Everyone Understood

Know someone living with RA? My newest post for NewLifeOutlook RA discusses six things people with RA wish everyone understood!

Tuesday, August 8, 2017

Pregnancy and Chronic Illness: What I Learned

I recently had the opportunity to write an article for Women magazine about my experiences with pregnancy and chronic illness (though I wrote it before we found out about pregnancy #3!) Though the article definitely looks prettier in the printed magazine, you can read it online here:


For those of you who have read a lot of my writing on this subject, you won't find anything particularly new or groundbreaking in this article. I do think it's a great summary of all the important things to keep in mind when considering a pregnancy with a chronic illness - but I have already written about most of the topics in other places. What I think is particularly exciting about this article is to see the topic getting more attention as an issue of general women's health - that affects more women than most people think!

News!

Those of you who follow me on Instagram will likely have already seen this news, but it just occurred to me that I hadn't yet announced it here! I actually blame the news itself for my lapse in brain power haha! ~;o)

We're expecting an addition to the family - and it's a girl!

The whole family is very excited, especially my five-year-old son, who had spontaneously asked me for a baby sister on multiple occasions. He keeps running up to kiss my belly at random times during the day. It's really the sweetest thing ever. His three year old brother was mostly just happy we broke the news with a pink frosted cookie, ("can I have another sister cookie pweese??") but even he seems to be adjusting to the idea and getting excited.

I'm currently about 14 weeks along and, for the most part, doing ok. Definitely still dealing with more morning sickness than I would like, but not quite as bad as the last time around (when I actually lost weight from vomiting so often). I certainly have some aches and pains, but this seems normal to pregnancy for the most part.

Considering what happened with my RA during my last pregnancy and after consulting with a perinatologist, I've made the decision to stay on Cimzia during most of my pregnancy. Cimzia is a TNF inhibitor, which are now generally considered quite safe for use while pregnant. I ended up using Enbrel last time around, which is also a TNF inhibitor. I had actually planned to go back to Enbrel this time, as it is a biologic that has been around for quite a while (a lot longer than Cimzia), I had already used it during a pregnancy, and I had at least some reason to think it would likely work for me. However, due to my insurance plan's step therapy policy, I was forced on to Cimzia. 

The perinatologist and I were both gearing up to fight my insurance - but before we launched our attack she did a bit more research on Cimzia. Although there is a lot less data on this newer biologic, she discovered something about the structure of the Cimzia molecule. It turns out that Cimzia lacks the antibody that is responsible for placental transfer. In English, this means that (at least in rodent models) none of the drug was transferred across the placenta to the baby. So, by happy bureaucratic accident, it seems I have ended up with what may be one of the safest TNF inhibitors for pregnancy. It's working relatively well (though not as well as the Rituxan, I'll admit) so I'm sticking with it for now. And I certainly already joined the Mother to Baby study to contribute our data to future moms-to-be!! 

Baby girl will be a planned C-section at the end of January. At some point in the future, I'd be happy to write more about how we made the decision to expand our family - because given my own health it certainly wasn't an easy one. I'm also happy to discuss my medication research and decision in more detail too. Though I plan to try to stop the Cimzia during the third trimester - so the baby can have live vaccines when she's born - I'll likely re-start soon after delivery and use it while breastfeeding too.

In the meantime, we're all enjoying watching my belly grow (and with baby number 3 it's definitely already growing!) The boys can't wait to feel her kick! And I promise to try to keep you posted on how things are going from now on!

Friday, August 4, 2017

Facing Forward: Cathy

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: Cathy
Location: Western Wisconsin
Diagnoses: RA (rheumatoid arthritis)
Age at Diagnoses: 55 years old

How are you currently treating your conditions?
The only medication I'm currently on is a biologic. Lifestyle changes complete my disease management strategy with huge success.  I've created a quick and easy-to-remember acronym, FRESH, to help me stay on top of these lifestyle game changers.  F is for food.  I try for an anti-inflammatory diet, mainly staying away from processed foods.  R is for relaxation or stress reduction.  E is for exercise.  I walk almost every day and have a weekly pilates session.  S is for sleep.  I practice good sleep hygiene.  This has had major professional implications.  H is for hydration.  I divide my weight in pounds in half and the resulting number is how many ounces of water is my daily intake goal!

What are the biggest challenges you have faced since your diagnosis?
1)  I'm needle phobic, therefore giving myself injections.  2)  Accepting the losses from the RA.  Professionally and especially the relationships that didn't survive my diagnosis.

What are your favorite tips and tricks for managing everyday tasks?
Don't aggravate angry joints!  I learned to style stretchy leggings multiple ways!  No zippers, buttons, or snaps to manipulate.  Comfort and ease win the day with RA!

How do you manage to keep facing forward every day?
Intentionally remembering what RA cannot take away.  My hope for the future.  Medical research is at an amazing juncture.  Study of the microbiome is yielding significant clues about RA.  I have a wonderful family to keep on going for.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
I wish I would've appreciated the role stress plays in RA and recognized I wasn't dealing with stressors effectively.  I would've learned stress reduction techniques, such as meditation.

Do you have a blog you would like to share?
Arthritis Wisdom (arthritiswisdom.com)

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