This page contains a list of articles I have written for
various Health Union sites, primarily RheumatoidArthritis.net.
Relationships
While it may be my body that hurts when my RA flares, I’m
not the only one who has to deal with the consequences of my arthritis. I don’t
think there are very many people who truly understand how much my RA affects my
life – but there are even fewer who realize how much it affects my husband’s
life.
When
you live with a chronic illness, it can be really hard to smother feelings of
frustration and unfairness when your partner is sick with a temporary one.
Sex
I’m
not a sex therapist and I am certainly not an expert on this topic. But I do
think it is important to talk about this issue and share whatever resources and
support we can to help each other.
Many of us with RA understand exactly how fatigue and pain
can make intimacy difficult or unappealing. And we can probably all agree that
a strained sex life will eventually take a toll on your relationship as a
whole. I have compiled a list of all the useful information and advice about
actually improving your sex life when you have RA.
While it may be quite uncomfortable, good communication is
critical to sustaining a healthy sex life, particularly when arthritis places
additional obstacles on the path to intimacy. If the idea of talking to your
partner about sex seems daunting, here are some tips that may help you foster
communication with your partner on this very important topic.
It
is easier said than done to bring up the intimate topic of sex with your
doctor! But, for the sake of your own health and happiness, as well as the
health of your relationship with your partner, it is very important to find the
courage to talk with your doctor.
"Sexual Issues in Rheumatology: Assessment and Intervention" at the American College of Rheumatology Annual Meeting
From body image to side effects from treatments to physical pain, maintaining something remotely resembling a healthy sex life can be a real challenge with RA.
"Lesbian, Gay, Bisexual, Transgender and Queer: Conversations and Care" at the American College of Rheumatology Annual Meeting
"Sexual Issues in Rheumatology: Assessment and Intervention" at the American College of Rheumatology Annual Meeting
From body image to side effects from treatments to physical pain, maintaining something remotely resembling a healthy sex life can be a real challenge with RA.
"Lesbian, Gay, Bisexual, Transgender and Queer: Conversations and Care" at the American College of Rheumatology Annual Meeting
It only takes one negative experience to alienate someone from
healthcare, which is a real problem for individuals with chronic health
conditions.
Advice From A Sexual Counselor for Chronic Patients
Although life with a chronic illness can present challenges when it comes to sexual health, there are things that patients can do to improve their situations.
Advice From A Sexual Counselor for Chronic Patients
Although life with a chronic illness can present challenges when it comes to sexual health, there are things that patients can do to improve their situations.
Pregnancy
Is
RA hereditary? A genetic component that influences susceptibility is not the
same as a disease being hereditary.
If you have RA and are thinking about starting a family,
here are some things you should consider and some tips that might help.
I am excited to share stories from my second pregnancy on
RheumatoidArthritis.net. I can’t promise that my story will always be
uplifting, but I can promise that it will be honest. And though it may not be
an easy task, I can promise that I will show it is possible (& wonderful!)
to start a family while living with RA
Being a parent is all about sacrificing your own needs for
the needs of your children. It’s a challenge that every parent faces. But, for
those of us living with chronic illnesses like RA, there are all sorts of extra
sacrifices, difficulties, and doubts we have to face.
Life with RA can sometimes feel like a constant Catch-22, a
paradoxical set of circumstances where you find yourself forced to make a
decision where it feels like you lose no matter what option you choose...In a strange way, I think
these experiences make women with RA uniquely qualified to deal with the
completely bizarre things that happen to your body while you are pregnant.
Despite more than five years of living with RA, sometimes
the R-word still seems too magical to say/type! But if you’ve ever read
anything about RA and pregnancy, you’ll have read some statistic about the
possibility of going into remission while pregnant.
I'm
finding my symptoms to be even more frustrating because there are so few
options for addressing aches/pains while pregnant. I've been brainstorming what
I can do instead & wanted to share my ideas.
Buying the right baby gear can be overwhelming for anyone,
but even more so if you're also dealing with RA. In this article I share my
recommendations to make life as a parent with RA a little easier.
Women
with RA can find breastfeeding to be challenging for many reasons. Here are
some tips to help you make the most of breastfeeding!
Unfortunately
I don’t think it can be denied any longer: my RA is officially flaring. I'm
also waking up with the most extreme morning stiffness I have ever experienced
– it feels like I have been run over with a steamroller. And the fatigue
(combined from the RA flare, difficult pregnancy, and chasing a toddler) is
beyond soul crushing.
Life with RA can be a near constant balancing act. You
balance the benefits of medications against the potential risks. You must
balance exercise & continued movement against pain and fatigue. You even
have to balance your desires & dreams against your realities &
capabilities.
It is common to experience an RA flare postpartum, but there
are several things one can do to make this period of time easier.
The
birth instructor kept talking about “using what nature provides” to make the
birth process easier, and I couldn’t stop thinking about how unfair it was that
nature had provided me with a bunch of inflamed joints and the ability
to get fatigued more easily than other women, which wasn’t going to make the
birth process any easier!
It is time for me to go back on the methotrexate because at
this point I have been living with partially treated RA for FOUR years. Though
I must say it has been totally worth it for my two beautiful boys.
“Pregnancy in Rheumatic Diseases” at the American College of Rheumatology Annual Meeting
The approach presented is a useful way for women with RA to evaluate themselves before deciding to start a family.
“Fertility and Rheumatic Disease” at the American College of Rheumatology Annual Meeting
When I was diagnosed with RA at the age of 25, one of my first fears was how the disease might limit me from one of my major life goals – starting a family.
Pregnancy and Parenting with Arthritis Study by the Canadian Arthritis Patient Alliance
Though I had a lot of friends who were new mothers also, none of them could relate to the specific challenges I was facing because of my RA.
“Pregnancy in Rheumatic Diseases” at the American College of Rheumatology Annual Meeting
The approach presented is a useful way for women with RA to evaluate themselves before deciding to start a family.
“Fertility and Rheumatic Disease” at the American College of Rheumatology Annual Meeting
When I was diagnosed with RA at the age of 25, one of my first fears was how the disease might limit me from one of my major life goals – starting a family.
Pregnancy and Parenting with Arthritis Study by the Canadian Arthritis Patient Alliance
Though I had a lot of friends who were new mothers also, none of them could relate to the specific challenges I was facing because of my RA.
Motherhood
Strength
isn’t about being the strongest. Sometimes strength is about getting back up
when you fall down.
Being
a mom is hard work…being a mom with a chronic illness can be even more of a
challenge. I chronicle an ordinary day in the life of an RA mom.
Babywearing For Parents With RA
After more than 4 years of wearing both of my boys, I honestly can’t imagine motherhood without the benefits of babywearing.
Mamas Facing Forward - A Community to Help Mamas Facing Chronic Illnesses Move Forward
When I realized that there seemed to be no resources addressing the unique challenges of motherhood with a chronic illness, I decided to start one of my own.
Babywearing For Parents With RA
After more than 4 years of wearing both of my boys, I honestly can’t imagine motherhood without the benefits of babywearing.
Mamas Facing Forward - A Community to Help Mamas Facing Chronic Illnesses Move Forward
When I realized that there seemed to be no resources addressing the unique challenges of motherhood with a chronic illness, I decided to start one of my own.
Daily Living
I'm
sure I'm not the only person living with RA who has experienced catch-22
situations, where I feel trapped by a paradoxical set of circumstances and
forced to make a decision where it feels like I lose either way. I've been
faced with dozens of these decisions over the past five years.
I
used to be a busy, fast-paced, crazy overachiever. After being diagnosed with
RA, I suddenly found myself in a body that wasn't capable of that lifestyle. It
was then that I decided to reevaluate my life, my choices, and my priorities. I
decided to try to keep looking forward, take one day at a time, and figure out
what would actually make me happy.
I
was tired of my joints hurting & making it hard to do everyday things. I
was tired of doctors…I was tired of blood tests. I was tired of experimenting
with medications …And, perhaps most of all, I was so very tired of being tired.
Learning to live with fatigue can be a long, complicated, & frustrating
process.
I’ve been thinking quite a lot lately about the “invisible”
aspect of life with RA. How do you make someone realize how much pain you are
in when there are no visual signs of your pain? Is it possible to help someone
understand your severe fatigue even if you are able to keep going through your
day?
Physical
changes can have a psychological impact, decreasing confidence/self-esteem.
This article provides coping tips.
These
bruises, while certainly not pretty, are very visual representation of the
battle I am fighting for my health every single day.
Although not technically a symptom of the disease, a lot of
people with RA have trouble with sleep. Some people have trouble falling
asleep. Some people have trouble staying asleep. Some people have trouble with
both.
A
chili cook-off. A movie in the park...All of these events are supposed to be
fun. But as I look at them stretching across every foreseeable weekend, I can’t
help but feel a sense of anxiety.
It
does still feel weird to pay for help. Sometimes I feel like a “good mother”
would be able to do all of this herself. But you know what? That’s nonsense.
There
seems to be an expectation that people should be able to tell whether you
“deserve” to park in a handicapped spot just by looking at you.
You
know what's terrible? When people without handicapped placards think it’s ok to
park in a handicapped spot for their own convenience.
While changing your diet does seem to work for some & is
worth a try, there is no scientific evidence that any particular diet will help
control your RA. There is, however, a fair amount of evidence concerning the
natural anti-inflammatory properties of many herbs & spices.
Did
you know that Lucille Ball & Pierre-Auguste Renoir had RA?
James May – A Man’s Story of Understanding and Healing
Nearly three times more women have RA than men....but there are still almost half a million men living with RA in the United States.
"Men, Masculinity, and RA" at the American College of Rheumatology Annual Meeting
An oft-repeated statistic is that there are three times more women than men with RA. Nevertheless, there are still almost half a million men living with RA in the U.S. alone.
James May – A Man’s Story of Understanding and Healing
Nearly three times more women have RA than men....but there are still almost half a million men living with RA in the United States.
"Men, Masculinity, and RA" at the American College of Rheumatology Annual Meeting
An oft-repeated statistic is that there are three times more women than men with RA. Nevertheless, there are still almost half a million men living with RA in the U.S. alone.
Dealing With Doctors & Insurance
I was scared about the prospect of switching
rheumatologists. I felt somewhat overwhelmed at the prospect of meeting this
stranger and letting him into my life, hoping he would eventually become a
partner I could trust to help me make the right decisions about my health. If
you are in the position of meeting a new rheumatologist, here are some things
to consider that might help.
I think what I hate most about life with chronic pain is
when someone says this: “please rate your pain on a scale of 1 to 10.”
The
snarky voice wasn’t interested in keeping an open mind or giving anyone the
benefit of the doubt...The snarky voice is a defense mechanism I’ve developed
based on my past experiences.
The hoops we have to jump through to follow healthcare and
insurance procedures can be very frustrating, especially when we are already
feeling our worst. I wanted to offer a few tips that might help.
I
understand that the DEA is trying to discourage abuse and encourage monitoring
of people taking these medications, but I can’t help thinking that there must
be a better way.
The Invisible Burdens of Chronic Illness
Most people do not realize that there are other burdens associated with living with a chronic illness – like the investment of time, energy, and money.
The Invisible Burdens of Chronic Illness
Most people do not realize that there are other burdens associated with living with a chronic illness – like the investment of time, energy, and money.
Dealing With Medications
Ready
to try a new medication? Just follow these 100 easy steps and you’ll be giving
it a try it in no time! (Since this is only a slight exaggeration, I hope we
can all laugh about it together!)
Giving
up on Remicade, after struggling to find the right treatment for more than a
year, felt sort of like going back to square one... Even though I still felt
like some sort of guinea pig, at least my rheumatologist helped me feel like a
hopeful one.
It has probably happened to everyone who has ever been
diagnosed with RA. One day you start to notice that your medications don’t seem
to be helping as much as they used to.
If
the Rituxan works, I won’t have to have another infusion for at least six
months. However, I can’t really bear to think about what I will do if it
doesn’t work.
Are
you traveling with refrigerated meds in tow this holiday season?
Opioids for the Treatment of Chronic Pain… Use or Abuse?
The question being debated by two prominent doctors was this - Can doctors safely prescribe opiates for chronic non-cancer pain?
Stop The Stigma
I was very pleased to see this commercial - focusing on a real issue in the chronic pain community - in a prime spot during the Super Bowl! Then I saw Bill Maher’s tweet.
Understanding the CDC Opioid Prescription Guidelines
Some important things to keep in mind when considering the new CDC guidelines. First, the guidelines are just that: guidelines. In fact, they are actually voluntary.
When It Comes To Managing Opioid Use, Can We Get A Little More Carrot Please?
We’ve already have plenty of sticks in place to discourage patients from using opioids – from burdensome regulations to social stigma to now, potentially, the need to be urine tested. But where are the carrots? Where are the recommendations and policies making the alternatives to opioids easier for patients to access and afford?
From The Infusion Chair
I’m not sure exactly how it happened, but this scenario, which would likely seem foreign or even scary to most people, feels quite ordinary to me now.
Opioids for the Treatment of Chronic Pain… Use or Abuse?
The question being debated by two prominent doctors was this - Can doctors safely prescribe opiates for chronic non-cancer pain?
Stop The Stigma
I was very pleased to see this commercial - focusing on a real issue in the chronic pain community - in a prime spot during the Super Bowl! Then I saw Bill Maher’s tweet.
Understanding the CDC Opioid Prescription Guidelines
Some important things to keep in mind when considering the new CDC guidelines. First, the guidelines are just that: guidelines. In fact, they are actually voluntary.
When It Comes To Managing Opioid Use, Can We Get A Little More Carrot Please?
We’ve already have plenty of sticks in place to discourage patients from using opioids – from burdensome regulations to social stigma to now, potentially, the need to be urine tested. But where are the carrots? Where are the recommendations and policies making the alternatives to opioids easier for patients to access and afford?
From The Infusion Chair
I’m not sure exactly how it happened, but this scenario, which would likely seem foreign or even scary to most people, feels quite ordinary to me now.
Friends & Family
Here
is a list of eight things not to say to someone living with rheumatoid
arthritis – and some facts you can offer in response if someone says these
things to you.
“At least it’s not cancer.” On the one hand, I
wholeheartedly agree. On the other hand, I think comments like these unfairly
downplay the seriousness of RA & other autoimmune diseases.
After hearing I had to take a chemo drug, my friends almost
universally reacted as if my RA was much more serious.
She didn’t want to hear about my experiences or share her
personal experiences with arthritis. Nope. Instead she wanted to offer me the
miracle cure. Have you ever been offered “the miracle cure”? How did you
respond?
I've been reluctant to write about such a hot button topic,
but it's also an issue that is extremely relevant to the members of this
community. So I’m going to go ahead and discuss it: vaccinations.
Exercise & Being Active
In a
strange way, I think my RA pain has taught me just how amazing my body really
is. Please don’t get me wrong. I’m not saying that I want this pain or that it
is easy to deal with it…but what I am saying is that instead of getting upset
and angry at my body for all of the pain, I now try to be more grateful for all
the things I can do and any day that I am able to spend without pain, or even
with less pain.
I
know that physical therapy techniques have done a world of good for some
people. I also know that I won’t be able to tell if they will help me unless I
try them. Do you have any advice for improving the experience?
Balancing
RA-related limitations with the desire to live life to the fullest can be
tricky, but sometimes the aftermath of an adventure is worth it.
Legal Issues
While
perhaps not the most stimulating topic in the world to read about, if you are
employed and living with RA it is worthwhile to know about your legal rights in
the workplace!
If
you – or someone you love – live with a chronic illness, you may eventually
need to take time off from your job to focus on a health issue. Luckily, in
cases of medical need, there are laws in place to help you have a job to come
back to!
Have you applied for Social Security disability benefits
because of your RA? What was your experience like? I provide an overview of the
program.
Understanding the Application Process for Social Security Disability Benefits
The application process for Social Security Disability Benefits is a complicated process. Here are some things to keep in mind.
Workplace Discrimination - Know Your Workplace Rights
It is important to remember that you have rights in the workplace!
Understanding A Social Security Disability Denial
Even if your application is denied the first time, it may still be possible for you to be granted disability benefits.
How To Appeal A Social Security Disability Denial
Receiving a denial does not mean that you will never be able to receive benefits. You can always appeal the decision of the Social Security Administration (SSA).
Understanding the Application Process for Social Security Disability Benefits
The application process for Social Security Disability Benefits is a complicated process. Here are some things to keep in mind.
Workplace Discrimination - Know Your Workplace Rights
It is important to remember that you have rights in the workplace!
Understanding A Social Security Disability Denial
Even if your application is denied the first time, it may still be possible for you to be granted disability benefits.
How To Appeal A Social Security Disability Denial
Receiving a denial does not mean that you will never be able to receive benefits. You can always appeal the decision of the Social Security Administration (SSA).
Advocacy
This
experience has really demonstrated the benefits of advocacy to me. Not only did
I help pass a law that will help all patients in the state of Colorado, I also
helped myself keep moving forward with a feeling of optimistic purpose.
Our
healthcare system can be extremely complicated to navigate. It often seems like
patients are a captive audience, with little to no power to influence how we
are treated.
The
more I think about it, the more I realize that I belong to a demographic of
arthritis sufferers who receive less support, recognition, and resources than
they ought to.
In
the darkness before the sun came up, 300 people strapped on their helmets, and
mounted their bicycles with a shared goal-to raise awareness and funds to
support people living with arthritis.
Biosimilars
give patients like me hope. If I run out of options for traditional biologics,
I may be able to turn to biosimilars once they are approved.
Many people who hear the world “arthritis” picture grandpa
walking with a cane, but arthritis isn't actually a disease of old age. Today
is World Arthritis Day. Help correct the misconceptions & set the myths
straight!
Given that everybody views things from their own, personal
perspective, I find myself wondering what the arthritis community might be able
to learn from the ALS Ice Bucket Challenge?
Most people who hear the word arthritis probably picture
Grandpa walking with a cane or perhaps Grandma’s hands hurting too much to
knit. But, in reality, arthritis is not just a geriatric disease. July is
Juvenile Arthritis Awareness Month!
There are 300,000 kids in the US growing up with arthritis –
but only 250 board-certified pediatric rheumatologists to care for all of them.
Over the past few years I have discovered that there are
quite a few widely held and terribly inaccurate myths about arthritis…So if you
get the chance this month, try to educate someone about the true facts of life
with arthritis!
Why would the Department of Defense care about arthritis
research? As it turns out, arthritis has a major impact on our nation’s war
fighters, our veterans, and their families…Our veterans and their families are
also impacted by rheumatoid arthritis. RA tends to strike military personnel at
the peak of their career.
While
I was excited to try the medication my rheumatologist suggested, I was shocked
to discover that I would need to pay nearly $1,000 a month out of pocket! Learn
more about my efforts to support The Patients’ Access to Treatments Act -
legislation that makes medications more accessible & affordable. And find
out what you can do to help!
Did you know that October 12th is World Arthritis Day? And
that 1 in 5 (22%) of adults in the United States suffer from arthritis? Or that
there are more than 300,000 children growing up with arthritis?
Join The Movement - Fight To Address Key Policy Issues
When it comes to healthcare policy, patients are experts because they have first-hand experience of what it is like to live with chronic illnesses. Taking part in advocacy efforts can be as simple as sending an email.
Does Sexism Exist in Healthcare?
Scientific studies have actually proved that there is a definite gender bias when it comes to how pain is treated.
What Exactly Is Arthritis? Let's Set The Record Straight!
May is arthritis awareness month - the perfect time to set the record straight that the word arthritis is used to refer to more than 100 different diseases and conditions that destroy joints, bones, muscles, cartilage, and other tissue.
Join The Movement - Fight To Address Key Policy Issues
When it comes to healthcare policy, patients are experts because they have first-hand experience of what it is like to live with chronic illnesses. Taking part in advocacy efforts can be as simple as sending an email.
Does Sexism Exist in Healthcare?
Scientific studies have actually proved that there is a definite gender bias when it comes to how pain is treated.
What Exactly Is Arthritis? Let's Set The Record Straight!
May is arthritis awareness month - the perfect time to set the record straight that the word arthritis is used to refer to more than 100 different diseases and conditions that destroy joints, bones, muscles, cartilage, and other tissue.
Research
Researchers
in Australia recently announced that they have developed a breakthrough new
treatment option for RA-the world’s first vaccine-style approach to treating
RA.
Hookworms
to treat autoimmune diseases?! As disgusting as it sounds there's some method
to this madness.
Scientists have made an important breakthrough in the fight
against debilitating autoimmune diseases by revealing how to stop immune system
cells from attacking healthy body tissue.
An update on the current research being performed by the
National Institute of Health and National Institute of Arthritis and
Musculoskeletal and Skin Diseases to search for treatments and, more
importantly, a cure for arthritis.
The Importance of Patient-Centered Research
Dr. Horonjeff's message to patients was that your voice is powerful and you can make a big difference in the way research proceed.
Could An Electrical Implant In Your Brain Help With Chronic Pain?
Results of a new study have allowed scientists to confirm that electrical stimulation of a particular area of the brain can work as a painkiller.
New Study Shows Vagus Nerve Stimulation May Reduce RA Symptoms
A new study has led to promising potential for treating RA through electrical stimulation of the vagus nerve.
The Importance of Patient-Centered Research
Dr. Horonjeff's message to patients was that your voice is powerful and you can make a big difference in the way research proceed.
Could An Electrical Implant In Your Brain Help With Chronic Pain?
Results of a new study have allowed scientists to confirm that electrical stimulation of a particular area of the brain can work as a painkiller.
New Study Shows Vagus Nerve Stimulation May Reduce RA Symptoms
A new study has led to promising potential for treating RA through electrical stimulation of the vagus nerve.
Reviews
As soon as I started thinking about getting pregnant for the
first time, I immediately started researching how living with RA was going to
impact my pregnancy (and my chances of getting pregnant in the first place). I
was very happy to find this book!
Kimberly’s book makes some great points about what you can
learn by accepting your RA diagnosis. She also provides prompts, or “dance
steps,” that may help you through your own personal journey.
MutipleSclerosis.net
- MS and Workplace Accommodations
- Workplace Accommodations Under the Americans With Disabilities Act
- Applying for Social Security Disability Benefits
- Australian Researchers Develop a Breakthrough Treatment for Autoimmune Conditions
- Workplace Discrimination - Know Your Rights
- Understanding a Social Security Disability Denial
- How To Appeal A Social Security Disability Denial
HepatitisC.net
COPD.net
- Applying for Social Security Disability Benefits with COPD
- Workplace Accommodations Under The Americans With Disabilities Act
- COPD and Workplace Accommodations
- Understanding a Social Security Disability Denial
- Workplace Discrimination - Know your Workplace Rights
- How To Appeal A Social Security Disability Denial
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