Friday, September 15, 2017

Facing Forward: Angela

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: Angela
Location: Minneapolis, MN
Diagnoses: Rheumatoid Arthritis
Age at Diagnoses: 18

How are you currently treating your conditions?
Medications:
prednisone, methotrexate, plaquenil, Rituxan, hydrocodone (as needed for pain).

Diet:
For about a year I’ve been trying hard to stick to a vegan and gluten-free diet, but it’s really hard. I have seen real, significant effects after eating a strictly vegan diet for at least a week: much less swelling in my feet and ankles (even my bad ankle). They look almost “normal” again! What are those strange bumps on the sides? Ankle bones! Because I’ve seen positive results, it is my goal to stick with a vegan diet consistently for a good length of time. It’s just really hard to give up a lot of your favorite foods and comfort foods when you’re hurting and already feel like you’re sacrificing a lot due to RA.

Other diet changes I’ve made include: no soda, no processed foods, no “fake” foods or foods with chemical ingredients, no refined sugar or carbs. When I’m able to be strict about eating only whole, clean foods, I feel a lot better overall and my RA symptoms also improve.

Alternative treatments:
I’m currently doing physical therapy in a warm water pool and then plan to continue with pool therapy and exercises on my own once I’m finished with my sessions.

I also started seeing an integrative medicine doctor almost a year ago and she is continuing to help me try different alternative treatments along side my conventional or Western medications. She works on several different things with me: stress reduction, anxiety reduction, weight loss, breathing exercises, meditation, an exercise plan, and she recommends other forms of self-care, such as yoga. My ultimate goal is to use alternative treatments effectively and successfully so that I can get off some of the powerful RA drugs I’ve taken for years. Tapering off of prednisone is the first plan of action!

What are the biggest challenges you have faced since your diagnosis?
I was diagnosed at age 18, the summer after graduating from high school, so I began college life while trying to cope with the physical and emotional pain of RA. My RA has always been moderate to severe and I’ve never gone into remission, sadly.  My RA flared up a lot and pretty badly during my college years, probably due to stress and not finding a treatment that worked well. It took me a bit longer to graduate from college (6 years), but I did finally do it! RA definitely played a factor in not being able to graduate in the expected four years. I often missed classes and had trouble getting work done because of the severe pain and swelling in my hands and feet. I also had to retake some classes because of this.

What are your favorite tips and tricks for managing everyday tasks?
Making sure to get enough sleep is an important thing to do and makes a huge difference with my RA. Lack of sleep definitely makes my RA flare up, as well as exacerbating other health problems (anxiety, depression, fatigue, GI problems).

Giving yourself enough time to get things done or to go somewhere is also important and helps a lot with managing the disease. If I’m rushed, then I get really stressed out, which then often causes flare-ups.

For me personally, my ankles are my main “problem joints” at the moment. Having ice packs handy, as much as possible, help a lot with soothing my ankle pain and swelling. Having a couple of Ace bandages in my purse whenever I go somewhere is also helpful if I find I need to do a lot of standing or walking.

How do you manage to keep facing forward every day?
Good question! It’s not easy. And some days are much harder than others. I think I manage to keep facing forward every day, even if I’m in the middle of an excruciating flare-up, by somehow telling myself this mantra: Hang in there, things are going to be okay. They will be okay! In the moment, this may sound and feel like the most ridiculous and ludicrous thought to have, but I hold onto it because I do trust that things will always be okay, somehow.

Having this disease for a long time has shown me, over and over again, what a rollercoaster of a ride RA is. There have been times when I couldn’t even walk and my entire body felt like it was being continuously beaten with a baseball bat. It’s difficult to hold onto hope or hear your tiny voice trying to tell you that things will be okay and you’ll get through it. I force myself to listen to that voice, though, and do whatever is in my power to get better. I’ve been doing this for 20 years and so far it’s working! Holding onto hope and trying hard to not beat myself up about things I can’t do the way I want is what keeps me going forward.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
This isn’t a death sentence, Angela. You’re going to be okay. You can still live a happy and fulfilling life—never forget that! You’re stronger than this.

Do you have a blog you would like to share?
Blog: inflamed.wordpress.com (Inflamed: Living with Rheumatoid Arthritis)
Twitter: @aclundberg

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

Wednesday, September 6, 2017

Juvenile Arthritis Camp Colorado

We had a ridiculously busy summer! And now here we are, already launching into fall. My oldest son has started kindergarten (?!?!), I've had the opportunity to start writing for a couple of great new publications, and I'm just about 19 weeks pregnant with baby #3 - all of which might help explain why I still haven't shared here about my experiences at JA Camp Colorado this summer!!

Volunteering my time and energy at JA Camp Colorado is honestly one of the most meaningful things I do all year long. I didn't grow up with JA myself, but I did get diagnosed with RA at a relatively young age - and so I like to think that I have life experience and understanding that would be relevant to these kids. One part of camp that I really like to contribute to is "Talk with the Doc," which are small group discussions that give campers the opportunity to really talk with doctors, nurses, adults living with arthritis (like me!), and each other about life with arthritis. In my group the kids wanted to discuss the search for a cure, the reality that many of us will need lifelong treatment, tips for making shots easier to deal with and getting over flares, whether stress makes arthritis worse and how to deal with it, trying different diets, and growing up to do different types of jobs with arthritis.

I love that JA Camp gives these kids an opportunity to meet and spend time with other children who are facing similar challenges. At at the same time, I love that camp offers the opportunity to just be kids and have fun with no judgment whatsoever. I don't think I'm really doing justice to how much of an impact the camp experience can have for kids living with JA, so instead I'd like to let some of the junior counselors share in their own words!! Not sure whether I'll be able to make it to camp next year with a tiny baby in tow, but I certainly want to do whatever I can to continue supporting these amazing kids - who are growing into pretty phenomenal young adults!

Tuesday, September 5, 2017

September is Rheumatic Disease Awareness Month!

This September marks the second annual Rheumatic Disease Awareness Month!! If we truly act as one voice, we can encourage more understanding and compassion for people living with rheumatic diseases – which will improve the lives of millions of Americans just like us!

Friday, September 1, 2017

Facing Forward: Beccy


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: Rebecca (Beccy)
Location: Ludwigsburg Deutschland (Germany)
Diagnoses: RA
Age at Diagnoses: 33

How are you currently treating your conditions?
I eat less flesh, more fish, and try to eat vegan. Not always. Absolutely no eggs. I drink golden milk and curcuma as pills. I don´t have a basis medication yet, maybe tomorrow. At the moment I take prednisone 5mg daily and sometimes diclofenac or ibuprofen.

What are the biggest challenges you have faced since your diagnosis?
My biggest challenge is the daily life with pain, being tired, sad, and not knowing what the future brings. My brain can´t handle the diagnosis. It´s like a new challenge every day. Is it a good or a bad day? What do people think? Can I do my household, job, and of course be a good mama for my girl? What does she think if I can´t be like before the diagnosis? Does it influence her life?

I miss my freedom. I miss waking up with no pain and fear of what the day brings. I miss roller derby so bad. Every time I want to go to the training I can´t because my body won´t let me. I miss sports. Running. 7 kilometers without pain. Just running. There were days I ran every day. Hard to imagine now. And people who don´t understand my illness are another challenge. They can´t see my pain. They can´t imagine what it feels like. I am not mad at them. I didn´t know it before. But just try to be empathic.

What are your favorite tips and tricks for managing everyday tasks?
Listen to your bodies. They tell you when to stop. Learn to say no. As a Mom, I know the dilemma. Don´t feel bad. Your kids feel it. Don’t lie to them. If there´s a bad day, cuddle and watch a film together. And what I´ve learned that helps me is to relax. I do Progressive Muscle relaxation and autogenous training. It helps me with the pain. And it helps me with the bad thoughts.

How do you manage to keep facing forward every day?
I must. There is no other option than to handle. The good days are so special for me and my family. I try to do all the things I can´t do when there is a bad day. I feel myself and can be happier. I have lost a friend two weeks ago because of cancer. I often think, what she would have given to live. And that keeps me fighting for everything. Maybe there will be better days with fitting medication. I have hopes in science.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Nothing. I lived as I wanted to live. I was like I was. That was me. With every thought. With every mistake. With every misbehavior. Everything was just easier.

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

Facing Forward: Stephanie

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: Stephanie
Location: Boynton Beach, FL
Diagnoses: Rheumatoid Arthritis
Age at Diagnoses: 25

How are you currently treating your conditions?
I am currently taking Enbrel injections once per week to manage the pain. I do my best to try and curb my diet (minimize gluten, dairy, sugar intake) but I have such a sweet tooth it is not always possible. The Enbrel controls about 95% of the pain thankfully.

What are the biggest challenges you have faced since your diagnosis?
Having to explain why I struggle to do simple every day things like turn on the faucet, open a jar, or squeeze a shampoo bottle. I went undiagnosed for 5 years and managed the pain with Tylenol sparsely and I adapted to doing things (like using my teeth to squeeze a bottle of shampoo). I was naturally adapting to not being able to do things and never thought about it until someone would see me doing it and comment on it, then I would have to explain the pain I am in and the difficultly the swelling makes it to do everyday tasks.

It is also a challenge to talk about this with close friends because I always feel like no one truly understands and it is so hard to explain. People associate "arthritis" with old age and not understanding rheumatoid arthritis is a chronic illness and can affect any age. I struggled in silence for years only using my husband's shoulder to cry on and as a sounding board because I did not want the "poor you" comments or looks from friends and family who really didn't know what else to say. I don't blame them though, it took me a long time to come to terms with this and I am still comprehending my lifelong diagnosis and how it affects me now as a new mom and how I will have to deal and manage the pain for the rest of my life. 

As a new mom, I am challenged with making decisions based on my ability to do certain things, for example: when it came to breastfeeding I was fortunate enough to be able to exclusively breastfeed my daughter but when she was about 7 weeks old I had to make the decision to go back on my medication and continue or stop breastfeeding but not for the reasons other moms stop (low supply, pain, time consuming, no desire to breastfeed, etc). I had all the struggles of other breastfeeding moms plus a need to take medication in order to walk (my knees had swollen to almost double in size). Thankfully I was able to take a medication compatible with breastfeeding and continue on in that journey. I just had immense mom guilt of depriving my daughter of breastmilk because of my own health issues. It's a challenge to think of your condition ON TOP of all the things new moms worry and think about.

What are your favorite tips and tricks for managing everyday tasks?
I take my time and know my limits. My body will tell me when I am not going to be able to open the jar or squeeze a bottle or pull the car seat out without the shooting pain. I have to take a moment and take a deep breath and try it again, try a different way... or ask for help. I have gotten better at asking for help. I don't have a lot of tips and tricks other than just listening to my body and not beating myself up when I can't do things someone my age shouldn't have to think twice about doing.

How do you manage to keep facing forward every day?
I try not to let it hinder my goals, I work hard to do everything I should be able to do, I am pretty silent about my condition and because it is an invisible illness, people forget to ask about it. Which I'm ok with, because if I had to talk about it all the time, I think it would be hard to stay positive and face forward. The thing I always try to do is turn the well-meaning, but often negative comments ("wow I can't believe you have to deal with that", "that's awful", "I feel so bad for you" and I've even heard "that sucks") into a positive, I can still do everything others can, it might just take me a little longer or I might need a little more help but I can do it. I don't want to be looked at or treated different which is probably why I am so private about my illness.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Wow. My diagnosis day was so emotional. I couldn't stop crying. I thought my life was being cut short and there was so much I hadn't seen or done (I was unmarried, no kids, didn't own my home, etc). It may sound dramatic but my life flashed before my eyes. If I could go back to that day, back 4 years, I would tell myself "You can do this! You will persevere and figure this out. You'll be able to see and do everything you're supposed to, everything others your age do and you'll be able to do it without the average person even knowing you have this condition." When I was first diagnosed, I craved a community of others, similar to me, who were also diagnosed with this condition at a young age and I had such a hard time finding that. I would also tell myself that it's out there and I would find it one day and that talking about it helps.

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

Wednesday, August 30, 2017

Pregnancy & Parenting With Arthritis – An Interview with Laurie Proulx

I was very excited to have the opportunity to interview the amazing Laurie Prolux about her own experiences with arthritis and pregnancy/parenthood - as well as the amazing resource she has helped to develop for other parents! 



Tuesday, August 29, 2017

U.S. Pain Foundation's INvisible Project

I'm very honored that I've had the opportunity to be featured in the U.S. Pain Foundation's INvisible Project: Rheumatoid Arthritis / Rheumatoid Disease edition. The publication includes profiles of 10 different individuals living with RA, showing the reality of life with pain and why people living with RA need and deserve more help, treatment options, and research. The goal is to create public awareness and offer hope to other pain warriors living with RA. 

A couple of the other individuals featured I already know and love (hi Leslie and Rick!) and I've really enjoyed "meeting" and learning more about the others!

If you'd like to take a look at the online version, click here


Friday, August 25, 2017

Facing Forward: Jeffrey

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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: Jeffrey
Location: Los Angeles
Diagnoses: Stage IV Non-Small Cell Lung Cancer, Adenocarcinoma
Age at Diagnoses: 46

How are you currently treating your conditions?
I had been on chemotherapy (Alimta) for over 2.5 years -- through 40 cycles -- and just stopped to take a break before switching to another treatment. I will either qualify for a new clinical trial on an immunotherapy combination regimen or I will try a targeted therapy for a specific DNA mutation, pending the results of a liquid biopsy that will take place this coming week. I also have tried staying generally active, eating a healthy and balanced diet that is high in protein, and working a lot on things that bring me joy.

What are the biggest challenges you have faced since your diagnosis?
The hardest thing has been fending off fatigue, both physical and mental. But I have found that the more active and engaged I can be, the better the results.

What are your favorite tips and tricks for managing everyday tasks?
Focusing on finding the beauty in everything around me. And when it comes right down to it, simple acceptance of what I need to do and that it has to get done.

How do you manage to keep facing forward every day?
Some days this can be a bit tricky, but I think about what I love in life and what is important to me beyond just how I feel. The more I engage with the world, the easier it is to envision myself a worthwhile part of it. I try to live in the moment, with an eye to the future -- goals remain important and there is a lot that I still want to get done.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Exercise matters -- stay off the couch as much as you can.

Do you have a blog you would like to share?
My blog is at www.justbadforyou.com/blog (I have chronicled my experience with cancer there since Nov. 2014, and occasionally write about other things, too)

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

Thursday, August 24, 2017

August Rheumatology Network Articles

My assignments for Rheumatology Network include reporting on recent scientific studies about rheumatoid arthritis and other related diseases. Although these articles are intended primarily for a physician audience (and thus can get a bit technical and jargon-y) I know patients are also interested in scientific advances - so I still want to share links to these articles! But if you ever have additional questions, please don't hesitate to let me know!

Initiation and switching of bDMARDs in recent years has contributed to markedly increased remission rates.

Lower disease activity may be associated with higher intake of fish as a whole food. 

For 2 anabolic agents used to treat patients with osteoporosis, the incremental costs of additional quality adjusted life-years (QALYs) gained would exceed the commonly cited willingness-to-pay threshold. 

Pregnancy Genes May Help Rheumatoid Arthritis
Type I interferons have a potential role in disease activity modulation in pregnant women.

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.