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.
Thursday, October 5, 2017
Thursday, September 28, 2017
September 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!
Anti-inflammatory Therapy for Atherosclerotic Disease
Anti-inflammatory Therapy for Atherosclerotic Disease
Canakinumab lowers CRP level and may significantly lower the incidence of recurrent cardiovascular events.
The live varicella-zoster vaccine may be effective in patients with RA who are starting treatment with tofacitinib.
BMD Loss Predicts Joint Damage in Rheumatoid Arthritis
A decrease in BMD just 3 months after diagnosis may independently predict radiologic damage at 1 year.
Osteoarthritis Knee Pain Connected to BMD
Low proximal tibial trabecular bone mineral density may play a role in its development.
BMD Loss Predicts Joint Damage in Rheumatoid Arthritis
A decrease in BMD just 3 months after diagnosis may independently predict radiologic damage at 1 year.
Osteoarthritis Knee Pain Connected to BMD
Low proximal tibial trabecular bone mineral density may play a role in its development.
Tuesday, September 26, 2017
Mamas Facing Forward Moves Forward!!
I'm extremely excited to announce that I've received a grant from the inaugural HealtheVoices Impact Fund to build a resource for women living with chronic illnesses who are or want to become mothers!
Labels:
Activism,
Breastfeeding,
Parenting,
Pregnancy,
Relationships
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?
Facebook: facebook.com/inflamedRA
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!
Labels:
Activism,
Breastfeeding,
Hope From Strangers,
Optimism,
Parenting,
Pregnancy
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!
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