Friday, February 26, 2016

Facing Forward: Julie

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: Julie
Location: Alabama
Diagnoses: Fibromyalgia, Endometriosis, Migraines, Cluster Headaches, TMJ, thyroid disorder
Age at Diagnoses: Have had migraines as long as I can remember, diagnosed with TMJ at 32, Fibro and cluster headaches at 34, Endo at 36

How are you currently treating your condition?
I use a combination approach. Medications overall were making me feel worse rather than better. What's helped the most is diet and lifestyle changes. Cutting out gluten pretty much reversed the major symptoms of Fibro (at least the over-arching pain). I still have bad fatigue days and I have pain but I can ignore it. Pacing and lifestyle changes, in general, are more important as they allowe me to do more and live a fairly normal life. I take a lot of supplements (Magnesium, Vit D, Vit B, FibroCane Daily & Serenitea from FibroCane), I use CBD oil muscle rub and lotion. The lotion is especially helpful with neuropathic pain in my feet. The only prescriptions I still take are a low dose of gabapentin (which also helps reduce neuropathic pain) and a muscle relaxer to help me sleep and keep the TMJ at bay. I also went through a pretty intensive treatment for the TMJ in the first couple of years after diagnosis. It involved multiple splints. I still sleep with a splint (nightguard) and will forever to keep my jaw aligned.
What are the biggest challenges you have faced since your diagnosis?
Learning my limits and learning how to live again. The first couple of years after Fibro hit I couldn't do anything. I laid on the couch 90% of the time or didn't get out of bed. After 2 years of that I'd had enough and had to find a way to go on living again. I had to decide if I was willing to do anything to feel better and I was, thus the major diet and lifestyle changes. They were big (and still are) but they have been worth it. 

What are your favorite tips and tricks for managing everyday tasks?
Pace yourself. Take breaks and listen to what your body is telling you. Is your body telling you it's tired? The it's time to stop (or at least take a break). Love yourself. You've got to take care of yourself and put yourself first. You can't be there to help others if you've got nothing to give.

How do you manage to keep facing forward every day?
It's pointless to look backward. Life has changed a lot. There were plans that I no longer have, but I have new ones. I've had to set my sights on new things and a new future. I'm ok with that now, but it does take some time getting used to and some accepting to let go of the plans you had. 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Don't take the pills! I think the pills made me feel worse initially. Had I just kept pushing forward and been willing to accept the idea that maybe food changes and lifestyle changes would help, I'd have saved myself two years of misery. But I probably wouldn't have listened to myself any more than I di anyone else who tried to tell me to try diet changes or to not rely on a doctor for a "quick fix." Doctors don't have all the answers.

Do you have a blog you would like to share?
I blog at Counting My Spoons.

Would you like to be featured on Facing Forward? If so, please send an email to  

Thursday, February 25, 2016

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.

Wednesday, February 24, 2016

#ChronicSex: Creating a Safe Place to Talk about Sex and Chronic Illness

The amazing Lene Anderson of HealthCentral has written a great article outlining the importance of the #ChronicSex movement as a safe place to discuss self-love, self-care, relationships, sex, and sexuality with chronic illness. 

Check out Lene's article here!

Or, if you prefer, you can go straight to the source! Kirsten Schultz, the blogger behind Not Standing Still's Disease and the creator of the #chronicsex hashtag, is now developing! I'm thrilled to see this important issue getting more attention, and I'm excited to be a part of it!

Tuesday, February 23, 2016

Maiden Voyage on My New Bike!

As I announced in December, this year I've decided to ride in the Arthritis Foundation's California Coast Classic - a 525 mile bike ride from San Francisco to Los Angeles. After volunteering for the 2013 and 2015 tours, and meeting some amazing individuals who managed to do the ride with arthritis, I decided to make it my own goal for 2016!

Right now, my RA is being treated with two forms of chemotherapy: an oral dose that I take once a week, and two doses via infusion (IV) every six months. This treatment plan is currently working well, giving me the confidence to take on a big physical goal like riding in the CCC. However, the medication I currently take via infusion is the fourth biologic medication I have tried - and I know from past experience that there's no guarantee it will continue working for me in the future. That's why it's so important to me to support the Arthritis Foundation as they work to fund research and resources for adults and children living with arthritis.  

Yesterday I took my brand new road bike on its maiden voyage! (Wearing my husband's jacket from the 2015 CCC!) Things I learned today: I have basically no idea what I'm doing with the gears, traffic circles are mildly terrifying on a bike, and (perhaps TMI) bike saddles are hard. (The veteran riders assure me that this will get better as my bottom, ahem, gets used to it). I only rode 7.3 miles, so I have a long way to go in my training, but it's a start!

As you think about your charitable contributions for 2016, I'd like to request that you please consider supporting my efforts. Even if all you can contribute is the cost of a latte, I promise that every little bit will help me reach my goal - and I will be extremely grateful for your support! 

Monday, February 22, 2016

HealthMonitor's Guide to RA: "How we make every day easier!"

After having several friends report seeing my picture in their doctor's waiting room, I finally got to see a copy of the HealthMonitor Guide to RA article! 

Aside from being entertained by a full page picture of my family in a magazine (hahaha look how BALD the baby was!!) I'm quite delighted to see a publication addressing the issue of RA & motherhood so openly!  

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.

Friday, February 19, 2016

Facing Forward: Kristin Joy

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: Kristin Joy
Location: Va Beach, VA
Diagnosis: Rheumatoid Arthritis, Hypothyroidism, Celiac's Disease, and Degenerative Disc Disease in my neck
Age at Diagnosis: RA at 27; other diagnoses at 43

How are you currently treating your condition?
As far as RA treatments go, I've been through a few over the last 16 years (Enbrel, Methotrexate, Simponi, Xeljanz). Right now we're trying Actemra injections along with Arava. Regardless of the number of injections I've given myself or how often I have my labs drawn, I still don't like needles!

Epson salt has become a staple in my house. Massage therapy also helps with inflammation and flares. It's one of my favorite places. That is where I discovered Biofreeze gel. It's amazing! My Tommy Copper fingerless gloves are also a must. I wear them almost all the time, especially to bed. They help with morning stiffness (the claw) and have rubber strips across the plans to help me hold on to things. Everybody in my family knows I'm a "dropper."
What are the biggest challenges you have faced since your diagnosis?
The biggest challenge I've faced with having chronic illnesses is finding a balance that's right for me. Not based on what others think I should or shouldn't be doing - but what I feel is the right thing for me. I try to prioritize my activities and include rest breaks when needed. I'm not shy about saying that I need a break.

What are your favorite tips and tricks for managing everyday tasks?
If there is something I know I shouldn't or can't do, asking for help is important. I love to cook but a lot of the prep work is too much. My mom will chop the veggies the night before or set out heavy pans so I don't have to lift them. I also try to store my things where it's easy for me to get them. Since I have Celiac's and often require different food than my family anyway, I have my own shelf in the fridge that's easty to reach. Convenience appliances are awesome too. My stand mixer does everything from beat eggs to mash potatoes.

How do you manage to keep facing forward every day?
The things that help me keep facing forward are my faith, my family, and my animals. I'm in an online group through church that includes others who have chronic illnesses. It's important to have people in your life who can relate. I get a lot of help from my parents. I know without them my life would be much more limited. And my pets, a big yellow dog named Payten and a bunny named E.B. They love me no matter what, so struggling to care for them is worth it. On bad days they are also the reason I get out of bed.

I have also learned to take things one day at a time. Tomorrow has its own troubles. That took some time to get used to. I like to say I am a control enthusiast. Sounds better than control freak.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
If I could go back to diagnosis day and tell myself something, it would be don't get so focused on what others think or say. There was a time that I was actually embarrassed to tell people I had RA. I think it was because "arthritis" is often associated with the elderly. And then there are the lovely comments, "You don't look sick!" or "Can't you just take some Tylenol for that?" I remember early on, sitting in my rheumatologist's office, getting dirty looks because I wouldn't give my seat to an older lady who was in much better shape than I was on that day. I've come to realize that there will always be people, no matter what the issue is, who will judge or say dumb things. And I guess that's their right. But, going forward and through advocacy, I hope to make people more aware of RA and its effects on those dealing with the disease.

Would you like to be featured on Facing Forward? If so, please send an email to  

Tuesday, February 16, 2016

Starting A Family When You Have A Chronic Illness

Deciding to start a family is always a big decision. But it can seem even more daunting when one partner lives with a chronic illness, or even both do.

Check out my newest guest post over at Mango Health for five considerations for starting a family when you have a chronic illness - from pregnancy to baby gear!

Friday, February 12, 2016

Facing Forward: Ness

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: Vanessa (but most people call me Ness)
Location: Liverpool, England
Diagnosis/Age at Diagnosis:
Migraine/cluster headaches - age 18
IBS - age 18
Endrometriosis - age 18
Fibromyalgia - age 42
ME/Chronic Fatigue Syndrome - age 42
Type Two Diabetes - age 44

How are you currently treating your condition?
In all the years I have had migraine I have never found a cure. Always just had to avoid certain triggers and then ride the attack if it arrived. The only way to ease it a little was Codeine but then when I got Fibro the severity and duration increased. My doctor did not like me taking so much codeine so she swapped it to sumatriptan and Topiramate, but the topriamate made me feel very depressed to the point of suicidal so I swiftly came off them! Currently, I take Sumatriptan (Imigram) at the first signs and it eases the severity for me. I lay in a dark cool room and use ice gel packs on my forehead.

Irritable Bowel Syndrome:
Again never found a cure. I simply manage by diet and constipation medication.

I suffered for many years - the only rest was being pregnant and breastfeeding as this eased the severity. Then eventually in 2009 I had a hysterectomy. This was the best thing I ever had.

Fibromyalgia & Chronic Fatigue:
As cliche as it sounds the best thing that has helped me is acceptance. I went through the five stages of grief after diagnosis and mourned the old me. This is the illness that totally changed my life and made me a different person. Once I accepted the new me I then learned how to manage and balance every aspect of my life. I have scheduled sleeps and maintain a healthy diet. I use heat therapy for pain relief and also Tramadol.

Type Two Diabetes:
I am controlling this with diet alone and trying to lose weight.

What are the biggest challenges you have faced since your diagnosis?
Outing myself from the chronic illness closet. Masquerading as a normal person is physically draining, so once I shared my illness warts and all it was such a relief. It was so hard to do but I'm so glad that I did.

Also, accepting a walking stick on the painful wobbly days. I saw it as an enemy rather than an assistance.

What are your favorite tips and tricks for managing everyday tasks?
As you educate yourself about your illness, always explain and educate your loved ones because it is so hard for them to understand. Accept help. Do what you can and leave the rest. Never attach guilt if you can not do something.

How do you manage to keep facing forward every day?
Positivity, meditation, mindfulness. 

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Finding acceptance is the key to happiness. 

Do you have a blog you would like to share?
The Girl With The 5 Lads

Would you like to be featured on Facing Forward? If so, please send an email to  

Thursday, February 11, 2016

“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.

Wednesday, February 10, 2016

Community responds to Super Bowl ad

If you read my recent article, Stop The Stigma, you'll have seen my response to Bill Maher's insensitive tweet about people who depend on opioids to treat their chronic pain. 

Creaky Joints has put together an article that highlights some other responses from the chronic pain community - click here to check it out!

Tuesday, February 9, 2016

How To Properly Feed A Toddler

When my first little dude started eating solid food, he could best be described as gleeful. He ate everything. He would shovel handfuls of ground meat cooked with salsa into his mouth. Broccoli disappeared in a flurry. Curry lentils were a favorite. He always ate with gusto and was willing to try anything I put in front of him.

Then he hit 18 months and basically stopped eating all together. We ruled out allergies and sensory issues and determined that what we had on our hands was actually quite ordinary – a picky toddler. But as my son’s list of acceptable foods dwindled to a mere handful, I found my appetite growing for articles with titles like “5 methods to encourage toddlers to try new foods” and “here’s how to end picky eating forever!” I read them all.

And I have great news! I have finally figured out how to properly feed a toddler – and I’m going to share what I’ve learned with all of you!

First and foremost, it’s important to remember that meals should never be stressful for anyone involved. If you stick to a structured eating routine, with scheduled healthy snacks, you can ensure that your child will always feel hungry at mealtimes. Be sure to feed your child whenever they indicate they are hungry, because snacks minimize blood-sugar swings and lessen undesirable behavior. Allowing young children to graze throughout the day is actually more compatible with their busy explorer lifestyles. Try placing a plate of snacks on an easy-to-reach table or giving your child a shelf in the pantry, allowing them to choose to eat whenever they are hungry. Remember, if your child doesn’t eat what you offer during a meal, they should not be allowed to have any snacks.

It’s best to serve meals family style, with the whole family sitting at the same table. Family meals are warm, bonding experiences that are extremely important to your child’s development. Your child doesn’t have to eat, but they are expected to remain quietly at the table with the family during meals. Keep in mind that toddlers can’t be expected to sit still for anything, even meals. Let your child leave the table whenever he indicates he is finished eating, even if he hasn’t eaten anything all, so that mealtime can be pleasant for the rest of the family.

Never ask your child to taste anything or insist on a certain number of bites. Simply place new foods in front of your toddler and don’t make a big deal about it. But offer a lot of praise for tasting new foods and encourage them to try new flavors. A good rule of thumb is the “two bite rule,” where you require your child to take at least two bites of a new food before saying he doesn’t like it. Researchers believe it can take up to 20 exposures to an unfamiliar food to gain a child’s acceptance, so be persistent. Remember to respect your toddler’s rights to truly dislike a certain food. Smile when your toddler insists that the meal you prepared is “disgusting” so that they will trust you won’t make them eat it again. This will help keep your toddler open minded.

It’s very important to make sure mealtimes are fun and interesting. Parents should tell stories and sing songs. Use cookie cutters to cut food into funny shapes. Place finger foods on toys, such as matchbox cars or trucks, and pave a road to your child’s mouth. Keep in mind that if you sing, dance, or play to encourage your child to eat, he will learn that you are willing to go to any length and will become more resistant to your efforts. Be sure to avoid toys at the table. Send your child the signal that mealtime is for eating, not for playing. Meals should always be relaxed and quiet.

What ever you do, don’t become a short order cook and prepare special meals for a picky eater. This will only create stress, resentment, and extra work for you. Cook only once and prepare whatever the adults want to eat. There are no other options for diner. But it’s a good idea to track your child’s food sensitivities and always keep them in mind when preparing meals. Make sure there is always something on the table you know your toddler will eat. Serve your toddler’s favorite foods several times a week and serve “yuck” foods rarely. If your child insists on eating cereal three meals a day, you should go with it because it’s better than not eating at all.

If you want your child to be an adventurous eater, avoid overwhelming your little one with a plate full of new foods. It’s best to introduce new foods one at a time. Keep in mind that it’s very important to embed more choices into your toddler’s eating habits, because your toddler will be more willing to try new foods when they are given the power to choose. Be sure to offer a wide variety of options. Try putting different choices in a muffin tin or ice cube tray to offer your toddler a tasting buffet. Or, to save time, buy a variety of locally grown organic produce, prepare each item three different ways, then throw them directly on the floor.

Remember, quality nutrition is extremely important for toddlers because it affects their physical and mental development. Deficiencies of nutrients can impair both brain and body functioning, so it’s crucial that your child is consuming the essential nutrients he needs to grow. Additionally, the food habits your child develops today will have an impact on his health through the rest of his life. If your child is rejecting an entire food group for more than two weeks, you should talk to a doctor or registered dietitian. Also, it’s important to keep in mind that a parent’s only job is to offer healthy meals – it’s up to the children to decide whether or how much to eat. There’s no need to monitor what your child eats. Healthy children know how much to eat to stay healthy and will eat when they are hungry. Try not to worry about it too much and make sure you keep the emotion out of mealtime. Remember, meals should never be stressful.

If all of this makes your head want to explode, here’s my actual advice: just do the best you can. Try the suggestions that seem most likely to work for your family and least likely to make you lose your mind. Then pour yourself a big glass of wine, because after all that nonsense you deserve it!

Now, if you’ll excuse me, unfortunately it’s time for dinner. Let’s just hope I can remember to follow my own advice – because my second little dude just turned 18 months…

Monday, February 8, 2016

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.

Thursday, February 4, 2016

Facing Forward: Katie

Facing Forward is a series that shares the lives of people living with arthritis and other invisible 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: Philadelphia, PA
Diagnosis: Lupus
Age at Diagnosis: 30

How are you currently treating your condition?
Since the New Year I've made taking care of myself a priority. I've been walking 3-4 miles per day and I've been trying to eat healthy. No particular diet. I've just been eating lots of fruits and vegetables and less packaged foods. Thankfully I'm not currently experiencing a flareup. 
What are the biggest challenges you have faced since your diagnosis?
When I have lupus flareups I can become almost completely debilitated. I get extreme fatigue that keeps me from normal activities. When it's really bad, it can be difficult for me to speak or even watch television because I'm that fatigued. Those times are the worst because I feel trapped in my body. For the most part, my mind still stays active, so having to lay on the couch and not do anything is the worst sort of torture. I recently had a baby, and I was pretty much out of commission for the entire pregnancy. That was frustrating. Thankfully I've been much better since she was born, but it's still a struggle.

What are your favorite tips and tricks for managing everyday tasks?
Not overdoing it is the most important thing. If I overdo it, I can set myself back for weeks. Other than that I take each day as it comes and hope I feel well that day.

How do you manage to keep facing forward every day?
I have no difficulty facing forward. Less difficulty than many healthy individuals I know. My condition has made a lot of the things I'd like to accomplish much more difficult (some impossible), but there are always other things that I can do. I went to law school and graduated top of my class. I practices for a year and was quite successful, but I realized that if I kept going in that field I was going to severely compromise my long-term health. I wasn't yet diagnosed with lupus, but I know I had some sort of autoimmune issue by that point (due to my mother's diagnosis). Thankfully, my husband supported me leaving legal practice and I began writing. I've since written numerous novels and I also blog about medical sexism and do other freelance writing. Do I wish I didn't have a ton of student loan debt for a degree I can no longer use? Absolutely. Do I wish I could do more to contribute to the family income? Yes. But everyone has their own struggles. Life is always a game of making the best out of difficult situations.

If you could go back to diagnosis day and tell your past self one thing, what would it be?
Diagnosis day for me was more of a relief than a traumatic experience. I'd been having health problems since I was a teenager. I would faint periodically for seemingly no reason, and I felt like I was going to pass out for much of the day. I'd have strange rashes that would come and go, joint pain, and bouts of severe fatigue. I could go a couple of years and be fine, and then have six months where I was severely debilitated. For about twelve years I was told by doctor after doctor that these symptoms were all in my head. Starting at 19, one doctor told me that it was "normal for 19-year-old girls to pass out." Another doctor asked me how many times I'd actually passed out, and I said three, but since then I sat down whenever I feel woozy so I didn't fall and hurt myself. He said if I'd only passed out three times then I was over-dramatizing things and there was no need for concern. (Because the fact that I had the good sense to sit down to prevent myself from passing out indicated that I *did* have a mental health issue?)

I eventually went to see a psychiatrist who told me that I had no mental health issues and I needed to go back to my doctor and get a full work up. It still took another 8 years to get to a diagnosis. When the tests would come back normal (such as a thyroid test) the doctor would say, "There's nothing wrong with you." When I'd point out that there was clearly something wrong with me regardless of what the tests were saying, the doctor would say that I sounded like I wanted to be sick, which meant that I was a hypochondriac. I didn't *want* there to be something wrong with me. There just was something wrong with me, and so I wanted to figure out what that was. Personally, I think it would indicate some sort of mental health problem if you didn't want to find out what was causing such debilitating symptoms. 

I've done research on this issue and have since learned that this sort of response from doctors when dealing with women patients is the rule rather than the exception. Doctors are far quicker to attribute a female patients' complaints to neuroses whereas they'll believe men's reports of symptoms. This sort of dismissive attitude leads to thousands of women dying each year, as doctors dismiss not only women with chronic illness, but also women with acute symptoms. Thousands of women each year, for example, are sent home from emergency rooms while they're having a heart attack because doctors are too quick to attribute their heart attack symptoms to anxiety. Similarly, it takes women years longer to be diagnosed with brain cancer because their neurological symptoms tend to be chalked up to attention-seeking behavior. Women are even less likely to be put on organ transplant lists. I could go on. 

Do you have a blog you would like to share?
Yes! The advocacy that I'm doing regarding the Issue of medical sexism can be found at my website MissTreated. There you can read dozens of studies showing that medical sexism is real and a serious problem. Moreover, the blog is a place where women can share their stories of being dismissed or otherwise mistreated by doctors. The only way we're going to gain traction on changing doctors' attitudes is to show that this isn't one or two women experiencing this. It's virtually all women, and it needs to end. So if you have ever experienced dismissive or demeaning doctors, I invite you to go to the website and submit your story. 

Would you like to be featured on Facing Forward? If so, please send an email to  

Wednesday, February 3, 2016

“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.