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.

Tuesday, January 26, 2016

Six Chicken Freezer Crockpot Meals

Being a mom is hectic. Living with a chronic illness is exhausting. When you combine the two, sometimes the idea of getting dinner on the table in the evening feels monumental. Those are the days where I've grown to love my deep freezer and my crockpot. On a day when I am feeling decent and have a bit of extra energy, I'll prepare and freeze a batch of meals. Then, on days when I'm short on energy or need a break from cooking, all I have to do is pop the meal in the crockpot and dinner is ready!

If you haven't tried freezer/crockpot cooking yet, I highly recommend it and I can offer you a simple starting point. A good friend of mine is about to have her second baby, but since we live in different states I couldn't help her prep food before the baby's arrival. Instead, I wrote up this shopping list and instructions to make it as easy as humanly possible to get six different chicken crockpot meals prepared and frozen. Now my friend will have these meals on hand for after her baby is born!

While these meals do require you to prepare rice or noodles and possibly a steamed veggie on the day you serve it, that is a lot less effort than preparing a whole meal! And the glorious part of this particular batch cook is that it is really simple and streamlined - after I got all the ingredients it took me less than 40 minutes to prep six different meals, despite arthritis hands during chopping! I thought some of you might also be interested in trying it, so I'm sharing the shopping list and instructions below.  You could always double it and end up with 12 meals too! 

Also (and here's an organized nerd alert here, guys!) I keep a list of what I currently have in my freezer on my phone - so that anytime I'm trying to figure out what to do for dinner I can just check the list. Otherwise stuff would get lost in the freezer forever - especially the chest freezer! I like to include cooking time and serving suggestions right on the list, so I always know how much effort my choice will take in advance.

Six Chicken Freezer Crockpot Meals

Shopping List:

-       12-18 boneless skinless chicken breasts (since 2 big breasts is generally enough to feed my family, the six-pack of chicken breasts they carry at Costco was perfect for this batch cook!)

-       cream cheese (8 oz)

-       2 red bell peppers
-       1 orange bell pepper
-       2 sweet onions
-       1 zucchini
-       baby carrots (2 cups)
-       2 cloves of garlic
-       lemon juice

Baking Goods:
-       cornstarch (1-2 tbsp)
-       white sugar (1/4 cup)

Canned & Jar Goods:
-       1 can large pineapple chunks in pineapple juice
-       1 jar spaghetti sauce
-       1 can cream of chicken soup
-       orange juice concentrate (8 oz)

Oils & Condiments:
-       ketchup (1/4 cup)
-       olive oil (1/2 cup)
-       white vinegar (1/2 cup)
-       honey (1 cup)
-       soy sauce (10 tbsp)

Spices & Seasonings:
-       1 packet dry Italian Seasoning
-       Black pepper
-       Garlic powder
-       Red pepper flakes
-       Salt


(1)  Get six gallon-sized freezer bags.
(2)  Label each bag with recipe name (and, if you want, cooking instructions).
(3)  Trim any fat off chicken breasts and place 2-3 in each gallon-sized freezer bag.
(4)  Chop/dice produce (zucchini, bell peppers, onions, garlic).
(5)  Place listed ingredients into labeled gallon-sized freezer bag.
(6)  Get out as much air as you can before you seal the bag.
(7)  Lay flat to freeze to save space in freezer (but make sure the outside of the bags are dry, otherwise they will stick to each other, tear, and then leak).
(8)  When ready to use, thaw in the fridge overnight (place in bowl or crock pot to avoid any issues with leaking as it thaws).
(9)  Individual cooking times and serving suggestions in each recipe.

Recipe 1: Chicken Cacciatore:

In freezer bag:
-       2-3 chicken breasts
-       all of the chopped zucchini
-       half of the chopped red bell pepper
-       half of the chopped onion
-       1 jar spaghetti sauce

-       On low for 6-8 hours

Serving ideas:
-       Over spaghetti noodles
-       Over baked spaghetti squash
-       Over quinoa
-       Over couscous

Recipe 2: Creamy Italian Chicken:

In freezer bag:
-       2-3 chicken breasts
-       Mix: 8 oz softened cream cheese, cream of chicken soup, dry packet of Italian seasonings in bowl; then pour over chicken in bag

-       On low for 4-6 hours

Serving ideas:
-       Over rice
-       Over quinoa
-       With broccoli, cauliflower, or other steamed vegetable

Recipe 3: Hawaiian Chicken

In freezer bag:
-       2-3 chicken breasts
-       all of the chopped orange bell pepper
-       the rest of the chopped red bell pepper
-       half of the remaining chopped onion (leave some for the next recipe)
-       ½ can large pineapple chunks
-       ½ cup pineapple juice
-       ¼ cup white sugar
-       ½ cup white vinegar
-       1 tsp garlic powder
-       2 tbsp soy sauce

-       On low for 4 hours

Serving ideas:
-       Over rice
-       With broccoli or other steamed vegetable

Recipe 4: Honey Bourbon Chicken

In freezer bag:
-       2-3 chicken breasts
-       the rest of the diced onion
-       all the minced garlic
-       1 cup of honey
-       ½ cup of soy sauce
-       ¼ cup of ketchup
-       2 tbsp olive oil
-       1/3 tsp red pepper flakes
-       salt and pepper

-       On low for 3-4 hours
-       When finished cooking, remove chicken from crock pot and slice into strips.
-       In a small bowl, combine 1 tbsp cornstarch with 1 tbsp water and pour into the sauce remaining into the crock pot to thicken. Repeat if not thick enough.
-       Place the chicken back in the sauce and stir to re-coat.

Serving ideas:
-       Over rice
-       Sprinkle sesame seeds on top

Recipe 5: Lemon Pepper Chicken

In freezer bag:
-       2-3 chicken breasts
-       ¼ cup olive oil
-       3 tbsp lemon juice
-       salt and pepper

-       On low 3-6 hours

Serving ideas:
-       With asparagus
-       With rice pilaf
-       With couscous
-       With qunioa

Recipe 6: Orange Chicken

In freezer bag:
-       2-3 chicken breasts
-       2 cups baby carrots
-       1 tsp garlic powder
-       8 oz orange juice concentrate
-       salt and pepper

-       On low 3-4 hours

Serving ideas:
-       Over rice
-       With frozen sugar snap peas