Wednesday, July 6, 2016
I had my 5th Entyvio infusion earlier today, so I wanted to give you guys an update on my health and how things are going. Long story short: I’m doing better. I’m taking a combination of drugs now (Entyvio + Budesonide + Cortifoam + Hydrocortisone), which are mostly keeping me healthy. I’m far from 100 percent, but there’s still a chance that the Entyvio will work, so I’m hoping and praying it kicks in soon. (FYI for the IBD peeps: From what my doctor has told me, it’s pretty common for Entyvio to “fail” around the 4th infusion, so don’t give up hope if it’s not working for you. A “steroid bridge” is also pretty common for getting patients to the 5th or 6th infusion, which is what I am doing and it’s kind of working.) If my symptoms don’t improve after my 6th infusion, we’ll likely stop Entyvio and move onto immunomodulators (6MP, Imuran, etc.) or a combination with a biologic. *sigh* So, that’s what’s happening on the UC front.
So, the end of June actually marked my 5-year anniversary with Ulcerative Colitis. Guys, five years. I can’t believe I’ve had this disease that long and still haven’t achieved remission. It’s been a longggg 5 years to say the least.
Five years of symptoms every. single. day (except for when I was on high doses of steroids).
Five years of tests, appointments, supplements, magic potions, and restrictive diets that didn’t work.
Five years of obsessively searching for answers.
Five years of wishing this disease away.
Five years of “you don’t look sick.”
Five years of strangers telling me that they know what’s best.
Five years of breaking down over and over again, only to fight harder the next time.
I’m not totally sure UC is something I want to “celebrate,” but I believe everything happens for a reason and maybe the combination of having this blog and getting this disease go hand-in hand? Maybe it was meant to be? I dunno, but I’d like to think there was a purpose for all of this and maybe I can help other people who struggle with IBD too.
If you’re newly diagnosed with IBD and don’t know what to do with yourself, here are five things that I want you to know. And, truthfully, if you had told me some of these things when I was first diagnosed, they would have likely fallen on deaf ears. I needed to learn them for myself, and it took a lot of trial and error to figure things out. Hindsight is 20/20 and looking back, I realize just how many mistakes I’ve made along the way, so I want those of you at the beginning of your IBD journey to learn from them instead of suffering longer than you need to.
Find a doctor who you trust and respect – This is always my #1 piece of advice to anyone newly diagnosed with IBD. About a year after being diagnosed, I switched GI doctors because my first one was so awful. Now, I’m totally obsessed with my current GI doctor and only have wonderful things to say about him. I respect him so much and trust that he has my best interests in mind. He listens. He’s compassionate and caring (he always gives me a hug when I see him) and he has a great sense of humor, which, of course, helps navigate this crappy disease. He also tells me to drink wine, so we’re definitely on the same wavelength.
Hit it HARD – IBD is not something you can mess around with and your symptoms can go from manageable to unbearable in just a few days. As you guys probably remember, I was really hesitant to try “hardcore” drugs (aka biologics) and ended up struggling so much with the disease for years. “Your normal is not normal.” I was so stubborn and thought I could get better on my own, but I just got sicker and sicker. I’m glad that I tried everything to fix myself, but I let it go on for wayyy too long. I also didn’t fully listen to my doctor’s advice, especially with regard to taking medications. I’d take them, but not always in the dose or frequency as prescribed, thinking I could control my symptoms with diet, supplements, lifestyle changes, etc. It wasn’t until I was really sick that I realized I needed to do everything in my power to get better. I was also out of options, so it was take ALLTHEDRUGS or spend my life in the bathroom bleeding to death. Taking ALLTHEDRUGS didn’t make me instantly better, but things eventually turned around. I assume the improvement was the combination of drugs or maybe the Entyvio is finally kicking in? I’ll never know for sure, but I learned that you need to hit this disease hard from all angles to have some control over it. IBD Is More Than ‘Just a Bathroom Disease’.
People will confusion your IBD with IBS and it will kill you a little on the inside every time. Instead of getting upset (because IBD and IBS are not the same at all), use that feeling as motivation to EDUCATE others about the disease. More education = closer we get to a cure. Important Differences Between IBD and IBS.
Find a Registered Dietitian to address nutritional deficiencies – This is super important since IBD folks do not fully absorb nutrients because of their compromised digestive systems, and it’s a shame than not more traditional doctors recommend RDs. And be sure to do your research before selecting one. They’re not all the same and some don’t have great recommendations. I once had an RD tell me to eat plain bagels and drink Ensure during a flare. Yikes. I’m lucky to have found Nicole. She’s smart, thinks outside of the box, and cares a lot about my overall well-being. She’s not necessarily trying to “cure” me, but, instead, working to provide my body with proper nutrition by suggesting certain foods/supplements/recipes/ideas to help it properly function. I feel like once you’ve lost that health, it’s so much harder to come back from a flare or live well in your everyday life, so it’s really important to stay on top of it and nix any sort of nutritional deficiencies in the bud.
LIVE your life – IBD will make you crazy. You have so little control over your body, so it’s easy to use the disease as an excuse to miss out on life and blame everything and everyone around you, including yourself, for what is happening to you. I’ve totally been there and it sucks so much. Don’t be a victim to the disease. If anything, when things get hard, realize you have a choice and fight harder. There’s almost always something you can do. Don’t give up. “Disease is an impediment to the body, but not the will, unless the will itself chooses.” I receive a lot of judgmental comments about what I eat and drink and how exercise is making my UC worse, but I’ve learned from having this disease for 5 years now that not enjoying my life is a sad, sad, sad existence and these things don’t necessarily make my symptoms worse. Here’s a great example: One of my worst flares actually took place when I was doing AIP, not drinking alcohol or iced coffee, and taking a break from high-intensity exercise. It was the most miserable 4 months of my life. On the flip side, however, the best that I felt with UC was last fall, and I was eating, drinking, and being merry on the regular. I hardly even thought about the disease! Basically, IBD makes no sense to me, so I live my life (within reason, of course) and try not to let it get in my way… and you should too!
Question of the Day
IBDers: Any advice to share for the newly diagnosed?
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In the US, summer is upon us. And it is damn hot. To keep cool and to get in a good stretch after lifting, I’ve been putting in a few laps a few times a week.
As a triathlete, my most hated leg of the race was the swimming. I hated being in cold water. I wasn’t the strongest swimmer, so it was—physically—the toughest part. But in recent years, I’ve come to embrace my time in the pool (at least as a post-workout stretch). Maybe it’s cause my cold tolerance has gone up. Maybe it’s that I’m no longer swimming miles at a time, instead doing dramatically shorter swims. Maybe it’s because I do it for pleasure, rather than training for one of the world’s most grueling events. All I know is that those few laps every week have worked out nicely. But for you water lovers out there, there’s a whole host of benefits that swimming has to offer. So if you’re suffering from the summer heat and looking for a great way to cool down while getting in a pretty extensive workout, swimming should be toward the top of your list.
So, what are some of some of the benefits you have to look forward to?
1. Swimming is tradition
Swimming is one of the most Primal skills. All throughout human history (and prehistory), people have settled in and around bodies of water. Rivers, lakes, and seas had the best food, the most important nutrients for building bigger and better brains, and we had to be able to handle ourselves in the water if we wanted to obtain those vital resources. Some populations have even developed physiological adaptations to a life in the water, like improved underwater eyesight. But even if you’re not a member of a seafaring nomad tribe, swimming is in your blood.
2. Swimming is low-stress
I can’t go out and run hill sprints or even bike sprints every day. I’ll hit a wall after a couple days of that after which the benefits cease and the negative effects accumulate. Traditional sprints on land are just too stressful. That’s why they work so well. Swimming isn’t like that.
You see, this is how elite swimmers train: every single day, often twice. Don’t use this as permission to overdo it. You’re not an elite swimmer, and you don’t need to be swimming for four hours every day. But what this does indicate is that swimming is overall easier on the body. You can recover quicker from it than other types of exercise.
3. Swimming is easy on the joints
Studies show that swimming is a great exercise for patients with osteoarthritis. Compared to cycling, swimming improves vascular function; both cycling and swimming reduce inflammatory markers and pain while improving stiffness and physical limitation in people with osteoarthritis. Turns out that the water is real easy on stiff, sore joints.
Swimming will keep your joints healthy by increasing motion, too. Since our connective tissues receive very little blood flow, they require conscious movement to shuttle blood, fluid, and nutrients toward and from them. Motion is lotion. Swimming is constant motion.
I wouldn’t only do swimming, though. You also need some stress on the joints to improve their strength and resilience.
4. Swimming works the entire body
Try it, guys. Hop in the pool, do a 50 meter sprint, and tell me how your muscles feel. It’ll be the best pump of your life. A pump so potent it’d bring 1970s Schwarzenegger to climax. If you don’t do this often, you’ll probably be sore the next day. Be warned.
5. Swimming is enough to keep your bones healthy
You might think that the gentleness of swimming and the perceived weightlessness of being in water would weaken the effect exercise normally has on bone. You’d be wrong, at least in rats. In rats subjected to three weeks of no exercise, interrupting their bed rest with swimming was enough to completely prevent loss of bone mass. The rats who didn’t swim progressed to full-blown osteopenia.
That said, it doesn’t seem to augment bone mineral density like high-impact sprints or strength training. Surveys of competitive swimmers find little evidence of increased bone mineral density, and some evidence of reduced density. Better pair it with more intense, load-bearing activity.
6. Swimming enhances blood flow to the brain
Exercise in general increases blood flow to the brain—it’s why a brisk walk can really get the creative juices flowing—but exercising in water boosts the effect. A recent study examined this. To avoid confounders, the researchers had subjects either do water- or land-based stepping exercises. Same type of movement and intensity, different medium. Those who stepped while immersed in water experienced augmented blood flow to the brain compared to landlubbers.
Even though the subjects didn’t actually swim, swimming will work. I don’t think there’s anything special about stepping. It’s the “being in water as you exercise” part that enhances the blood flow.
7. Swimming trains a very specific capacity you probably aren’t getting
One study found that adding weight training to a swimmer’s routine made them more powerful in the water (“tethered swim force”) but didn’t improve actual swim performance. Another found that only swim-specific lifts (bench press and pullover) improved swim performance. This means that swimming is doing something unique to swimming. It’s making you better in the water. It’s giving you a specific type of fitness that you can’t get elsewhere.
If your goal is total fitness and all around capacity, you can’t neglect swimming.
8. Swimming will keep you alive
If you’re a competent swimmer able to fluidly and efficiently tread water, float, and move through the water, it will be very hard to drown you. The world’s about 3/4 water. You’re really limiting yourself if you’re only comfortable on land.
9. Swimming builds lung capacity
Everything that taxes your oxygen use builds lung capacity. Lifting weights, running sprints, jogging, hiking, sex, and competitive hopscotch can all build lung capacity. But swimming is cool because it’s an environment where you often can’t breathe even if you wanted to. It’s not like holding your breath while running, where you just have to open your mouth and inhale. It’s too easy to let a little air slip in when you’re immersed in the stuff. Being underwater makes it easier to keep from breathing because you must actively choose to breathe. It’s an extra step.
There’s evidence that swimmers build greater lung capacity than runners. Swimming forces air restriction. Runners always have all the air they want, whenever they want.
10. Swimming may offer special benefits to asthmatics
Chlorine muddies the waters here; there’s some evidence its presence in pool water can worsen certain aspects of asthmatic function. But on the whole, swimming, particularly in non-chlorinated water, appears to offer special benefits to people with asthma and is less asthmogenic than other types of exercise. If it makes your asthma worse, don’t swim (or try a chlorine-free option), of course. You’ll know it if it’s getting worse.
11. Swimming is cold water exposure
If you’re looking for a way to expose your body to cold water, and you’re not one to idly sit in a tub full of ice water, swimming works. You’ve got a job to do. Swimming isn’t just exercise. It’s also cold (or cool) water exposure, provided you’re not in tepid bath water. Being in cool water forces you to burn more calories (via brown fat activation) to maintain your body temperature. If you can resist the massive spike in appetite many people experience after swimming, you’ll likely burn a little extra fat.
12. Swimming is joyful
There’s something special about swimming beyond the fun it provides. You dive down below the surface and enter another world, an alien world where your interactions with the laws of physics are different than you’re used to. It’s a “reset,” a literal change of perspective. The immersion one experiences while swimming isn’t just a physical consequence of being surrounded by water.
Has anyone else been spending more time in the water this summer? Why do you like to swim? Is it leisure time, training time, or both? Let me know down below!
Thanks for reading, all.
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We in the Food Network Kitchen got our first box of CSA (community supported agriculture) produce from Mountain View Farm in Easthampton, MA. And probably like many of you at home, unpacking the box had us wondering, “What are we going to do with all this stuff?”
CSAs aren’t exactly a new idea. After all, farmers selling directly to the consumer is the original business model. But the locavore trend is one way to buck the industrial agricultural system (or skip the hassle of the produce aisle), with members buying “shares” in a farm’s annual harvest.
This is the most-exciting box of produce you will ever receive — your own mystery basket to keep you on your culinary toes week after week. So sign up, get to know your local farmer and keep reading to find out how to use even the most alien-looking produce in the box. We’ll give a glimpse at our CSA box and share tips on how to use the produce every other week throughout the summer and fall.
Bok choy is a mild-flavored member of the cabbage family you’ve probably enjoyed at your local Chinese restaurant. Whether steamed, stir-fried or tossed in a saute pan with minced garlic and oil, it is a delicious dinner table addition.
You might not know it from looking at this vegetable, but it comes from the same family as carrots. Slice your fennel bulb for adding crunch to salads, roasting for a side dish, or steaming and serving with fresh dill.
Green curlicue garlic scapes are mild, almost sweet in flavor, with a garlicky aftertaste. Chop and saute them with vegetables, add them to your morning frittata, or enjoy them raw in salads or as garnish for crunch.
The leaves of this Japanese turnip are bitter and benefit from cooking, while the roots are small, delicate and tender. Enjoy the whole turnip from root to leaf.
Head or iceberg lettuce has gotten a bad rap for being tasteless and lacking the healthy folates of darker, leafier greens, but its crispiness and mild taste make it the perfect lettuce base for chopped and wedge salads.
Think of kohlrabi — the strangest-looking vegetable in the bunch — as a mild-flavored cabbage. Roast it, mash it, saute the greens or eat it raw; you’ll wonder how you got along without it.
Your standard radish comes in a variety of colors, has a peppery taste, and is delicious raw or roasted. Don’t waste your radish greens, which can also be eaten, lightly sauteed, or pulverized into soup or pesto.
Scallions are an easygoing onion. Milder than mature onions, scallions can be enjoyed raw or cooked when you want just a hint of pungent onion flavor.
No doubt you’re familiar with this dark green, force-fed to children around the world. As adults we can appreciate that the versatile, tender leaves are perfect for bulking up salads, and they’re great steamed or sauteed for a simple side dish.
There are a million uses for this sweet, summer berry. Enjoy strawberries raw, bake them into pies, make them into jam, and even toss them into savory green or whole-grain salads.
Summer squash has thinner skin than winter varietals, meaning it cooks faster. Try different squashes, including the scalloped pattypan squash and green zucchini, in a summer stir-fry or shaved into raw “noodles.” Look for more glimpses into our CSA boxes throughout the summer.
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Cheers! Here is a recap of some of my recent eats!
For breakfast one morning I made a make-shift cereal with oats, mashed banana, cinnamon and peanut butter. Sort of like cereal meets oatmeal but good for summer weather and when you forget to make overnight oats the night before.
Another day I made one of Anne’s banana and egg pancakes for Mazen and me.
We each had half, and I served them the same way: cut up into little pieces. He loved it! Mine was drizzled in almond butter with peach and coconut.
Next I had smoothie day! A chocolate Vega protein powder mixed with banana, oats, milk and berries. Served with some French press coffee!
And finally, a nice yogurt parfait with berries and some of the Great Harvest Gluten X Cinnamon Chip!
Lunches are all over the place – I have been eating on the fly a lot. But here’s a nice home lunch of greens with salmon salad on top and Whole Foods Everything Crackers for scooping.
Another day I had leftover pesto soup with a Lumi green juice.
This guy is seriously a vegetable lover’s drink! You can really taste the greens and cucumber inside. Salad in a bottle! Ingredients: Organic Cucumber, Organic Kale, Organic Spinach, Organic Collard Greens, Organic Lemon.
And leftover Mediterranean salad with fancy Nut-Thins for scooping.
Good news for the locals: ACAC is now going to have rooftop service! Sounds dangerous….!
And finally some dinners. Post-soccer saute of chicken sausage, leftover rice, a little veggie broth, and frozen peppers. It was quite good thanks to so much flavors in the chicken sausage.
I picked up some ravioli and puttanesca sauce from Mona Lisa Pasta and served them with some sautéed zucchini on the side.
Plus a single pice of Buf mozzarella!
And lastly, Cook Smarts Teriyaki Pork Meatballs. The sauce on these was soooo good! I’m hoping to get back to regular Cook Smarts meals again soon because they never disappoint!
Not pictured: Ben and Jerry’s Half Baked. Hurts so good.
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