Two Steps Forward, then Back, then Forward

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Two steps forward, two steps back, I feel like I’m dancing the Cha-Cha all around my auto immune disease. I made such great progress all summer. Spent time in the sun, enjoyed the pool, the garden, the kids. Then, on the last nice day in September, I spent a day in the sun and BOOM! Flare of epic proportions. I’m talking pain, heat, redness, sleep interrupting misery.

Luckily, I was off to the rhumetologist the next day & got myself a script for Prednisone. So, now I am taking that in gradually lowering doses, to see if a low dose can keep me rash-less. It worked, my rash cleared right up, even my hands are nearly normal. For me, those are the worst areas.

Then, two weeks ago, I broke my Paleo diet commitment & had a mini-DQ blizzard. Dairy and gluten. It was sooooo good. And, BOOM! back flare. Less horrible, but still itchy and sore. Cleared up through the week. I had a mouthful (swear, that is it) of cake. BOOM! Back flare. Also, my lip swelled up. That will go away with an anti-histamine, but still, it is weird.

OK OK OK. I get it. Perhaps dairy and gluten really are out “for good”. Today is Methotrexate day & stupid me, I’ve been taking it wrong for the last three weeks. Supposed to be divided doses, not all at once. I am really hoping that the combination of Prednisone & Methotrexate will combat the extreme discomfort today.

I’ve been so good about the Wahl’s Protocol, trying to keep my greens in balance, I even started eating liver today. Ok, it was two meatballs, and they are 50/50/50 Meatballs – so not exactly a huge serving. But it was liver and no, I didn’t really like it. (Worse, I have about 3 pounds of it to “get through”) I am determined to have at least 2 servings of these meatballs per week and maybe I will be able to find a way to appreciate it more. I believe Dr. Wahls and her protocol. It has made a HUGE difference. I just wish I could report the disorder in remission.

Maybe another day!

Still Improving

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It’s coming close to two months since I started the Wahls Protocol. I feel like I’m continuing to make progress, though it is slower and more subtle. For instance, I don’t itch anywhere except my scalp, and even that is better. My rashes are lighter, smaller and even fading away in some places. My face is less blotchy and my occasional acne is greatly reduced. (Up until yesterday I would have said gone, but up popped a few red dots overnight!)

I’ve been a little less strict on my 3-3-3 vegetables and fruit, just another symptom of my crazy life these days, but I am trying to keep it in balance. I’m sure I could get more sleep and drink a little less tequilia. But it’s summer and where is the fun in that??

I am wondering if I need to eliminate eggs and potatoes completely. I noticed that after Sunday brunch, I seemed to be redder again. So, is it the egg or the potato? Sundays are the only days I eat both. Honestly, I’d rather it was potato, since I do like eggs. But, the Auto Immune protocol says eggs can be problematic. So, I will need to examine this in the near future.

My continued weight loss has me down a total of 10 pounds and none of my clothes seem to fit right. I’m swimming in most of them and excited to get into the smaller size! I’m wearing clothes that haven’t fit for 2 years and I haven’t been doing much for exercise. Mostly too tired or busy to bother these days, but I know it is really important.

It is supposed to be super hot this weekend, so I expect to be rockin’ the rashguard and spending the day lounging under an umbrella at the pool. Sunscreen, sunscreen, sunscreen. Sigh. At least I can BE outside.

Auto-Immune Disorders and Stress

Not long after my last post, my life turned into one giant cycle of stress. Our area experienced massive amounts of flooding which meant I didn’t sleep much (or at home even) and my stress level went to levels exceeding DEFCON 1.  We had similar flooding last year but this was an even larger scale over a longer period of time.  Interestingly enough, while I literally ran around (from one end of our building to the other, up stairs, down stairs…) running the Emergency Control Centre, my skin stayed relatively clear.  I did take my medication as close to normally as possible, and stuck to a modified Wahls Diet, closer to Paleo since leafy greens were a little scarce.  So, I thought I “got lucky” and no ill effects from the disaster.

Oh, but how our bodies can fool us.  Practically the moment I got home, I could feel my skin start to itch and get blotchy.  The more sleep and care I took of myself, the worse it got. My poor back went from almost clear to bright red to almost purple, hot, tight and uncomfortable.  My arms and hands became one giant red blotch.  I even gained a bit of weight!  What was going on?

I resolved to treat myself extremely well.  Epsom salt baths, prescription cream, plenty of sleep and daily walking.  And slowly as life returns to normal at work, so too does my skin.  I’ve been strict on the Wahls Diet, leaning as close to Wahls Paleo as possible.  I struggle to get the recommended protein, fish and organ meats right now but I’m working on it.  I’ve eaten the most delicious steak two nights in a row, even polishing off my husband’s share.  (And, I even lost that mysterious “weight gain”.)

It proves to me how sensitive my body is to stress.  Perhaps it takes a few days to show up, but the stress is going to manifest itself in some way.  There is only so much I can do to keep my levels low, being a wife, mother and full time employee.  Yet, there are things I can do.  Take walks, say “no” to projects that don’t inspire me, find ways to bring joy to my life and others.  These are my strategies.  What are yours?

Wahls Protocol One Month Later

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I wish I had a picture to share, but it would be very NSFW and at least R-rated, since my worst rashes, apart from my hands, appear on my chest.  Saturday marked the completion of one month on the Wahls Protocol.  I tried hard to be strict on gluten, dairy and soy.  I tried really hard to stick to the 9 cups of vegetables and fruits daily.  I did not try to limit sugar.  In fact, I ignored that part all together.

I learned to eat Kale, beets, leeks, baby bok choy, brown mushrooms, Bragg’s liquid aminos, kippered herring (which was surprisingly good) and cauliflower “no potato” salad.  I gave up white potatoes in favour of sweet potoates and have eaten 3 different kinds of squash.

I tried coconut milk creamer in my coffee, coconut yogurt and coconut ice cream, all insanely good.  In fact, so good, it is probably illegal in at least one country and surely can’t be part of the “diet”.  I also tried plain coconut milk in my coffee, which I highly recommend.

I’ve had to tote my own snacks, search for GF/CF meat snacks that provide protein and portability.  Grimm’s makes a wonderful honey garlic peperoni stick that requires no refrigeration.  They have a great variety of other meat and deli products that can help you “fit in” in social situations.  The smokies are also yummy and as long as your bbq is clean and you use a clean utensil, your GFCF smokie will be a safe choice at the next BBQ party.

I’ve embraced coconut oil, in cooking, as a beauty product and a massage oil.  I don’t think it does a lick of good on my hands, but it certainly is a good moisturizer.  I’ve even started putting seaweed (dulse flakes) in my cooking.  I’ve tried them in salad, over scrambled eggs and “straight” right out of the jar.  They taste a bit like fish food smells – salty and seaweed-y.  Is that even a word, well, that’s what is tastes like.

And, after all that learning and tasting and experimenting, may I have a drum roll please…………………………………………..

SUCCESS!!!

I have clear skin. Not a lot, but my chest is clear. My arms are improving, my hands are not.  I can’t say I sleep better but I feel better.  I’m more alert, even on days that I don’t sleep as much.  I haven’t had a bout of insomnia for 3 weeks, which is a record.  I’ve lost 7 pounds and I haven’t been exercising.  Can you imagine if I actually got a sweat on??

It’s minor success, really.  Nothing that anyone else is likely going to notice.  In fact, I feel like I’m making a big deal out of nothing.  After all, it has only been a month and my progress is slow.  But, I’ve never had progress with the medication, only increasing rashes and exhaustion.  (and mouth sores and low sex drive and insomina)

I’m celebrating today with salmon, sweet potato, asparagus. spinach and strawberries.  (If you’re counting, that’s 1 leafy, 1 sulfur, 1 coloured and 4 oz of fish)

 

Happy Father’s Day

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My wedding day, circa year 2000.

Happy Father’s Day to all the amazing dads out there and to those who will someday be. My dad taught me so many things but the best thing was a joy of cooking. We used to spend hours in the kitchen together trying out Thai food, Chinese, Indian and a host of other cuisines. He gave me a love of ingredients and variety .

Today we will enjoy a Wahls Protocol friendly meal. I’ve got a beef roast in the crock pot covered in strips of bacon (no preservatives!) with gravy, mashed potatoes and cauliflower, steamed broccoli and a salad fresh from the garden.  Hubby’s favorite and even the kids cheered!

 

Sun Sense

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Ahhh Summer. Who doesn’t love laying out, soaking up the rays after that incredibly looooooooooooong winter? Feeling the warmth on bare skin and a soft breeze in your hair (and the occasional WHACK! of mosquitos). Unless of course, you are sun sensitive like me, and laying out in the sun is the very last thing your dermatologist and rheumatologist would recommend.  Sunscreen and I are old buddies, in fact you could say we are the best of friends, since I never spend time in the sun without it.  It isn’t my favorite part of the day but it does keep me from having a deep, glowing sun burn all year long.  I do take Vitamin D all year because of this but I am trying to spend 10-15 minutes per day in the sun without sunscreen when it is practical. I seem to be able to tolerate that short amount of time without my rash acting up.

My sun sense strategies include sunscreen as well as sun protection clothing.  I bought the cutest rashguards from Roxy.com for our winter trip to Mexico and they were comfortable and not as hot as I expected.  I got a the one pictured below, plus a long sleeve with a higher neck.  They shipped to Canada and there are stores that carry Roxy, just none with stock in January close to my house!

WHTBasically Roxy SS Rashguard by Roxy - FRT1

I also wear wide brimmed hats and ball caps when exercising.  I buy mine at Swim Co in Winnipeg, at Polo Park Mall.  I love these hats because they are “packable” – meaning you can squash them into a purse and they pop out looking perfect.  This makes toting a hat easier and more likely to be worn.  Plus they come in cool colours and styles.

Beach Basics Ribbon Hat

The last of my sun sense ideas is the simple stuff – sit in the shade, try to wear sleeves/cover your skin with clothing and don’t be out for long periods of time.  Our summers are so short that I find staying indoors the very hardest.  I’m thinking about having UV film applied to my car windows next to make traveling a little safer for me.

But, at the end of the day, and it is Friday, I just want to throw my head back and sing with the incomparable Sheryl Crow:

Stress Relief

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Besides good nutrition, another important aspect of the Wahls Protocol is managing stress levels.  I know that the more stress I feel, the worse my rash gets. Unfortunately, we are now in year 4 of extreme rain and flooding.  Year Four.  This, in an area that experienced extreme drought in the 1930s, 1980s and even mid-2000s.  My grandparents have never heard of “too much rain”. 

I’m married to a wonderful farmer and this is the 4th year we’ve struggled to put in a crop.  There are approximately 6-8 weeks in the spring available to seed the fields and we’ve done about 10-15% of our acres.  It’s pretty hard to earn a living on 10% and worse, the crops that are in are drowning in the field.  Yes, there is some insurance.  No, it isn’t enough to live on.  We farmers are a pretty independent lot and relying on insurance, even though we pay huge premiums, is not a satisfying way to feed the family.

So, the 21 inches of rain we’ve had since April 23 does not help me in my quest for stress relief.  However, knowing it is important to stay centered, I have developed a few coping techniques.

1.  Epsom salt baths – not only do they soothe my tender skin, the salt relieves tension.  Plus, it is alone time in the bathroom.  Mothers understand how precious this is.

2.  Personal massage – I learned about this from Dr. Wahls book.  I use coconut oil and start by rubbing oil into my feet and work my way up the body, arms, chest and back if hubby is around.  I also rub it in my scalp if it is especially itchy.  It takes 5-10 minutes and is incredibly calming.  Try it!

3.  Exercise – a walk, a bike ride, a run.  Anything that gets you out in nature and moving.  I love listening to audio books while I exercise, available free from the local library.

4.  Cooking – I admit it, I’m a closet chef. I love to cook. I love making soup and bread and complicated desserts.  If I don’t try to cook a month’s worth of meals in a day (which I do regularly), the act of chopping and stirring can be quite relaxing.

What are your ways to relax?  Any tips for me?

Gluten Free Bisquick

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Do you know the three words that strike fear into my heart? That’s right “Mom, I’m hungry”.  You would think it would be something like “Mom, I’m hurt” or “Where’s my homework?”  But no, I have hollow legged boys who are always hungry. Does it matter that they just ate, exactly 12 minutes ago?  Does it matter that there is literally no food left in the fridge for their school lunches tomorrow?  Is there are a reason I ask such pointless questions??  Sigh.

So, because I am constantly feeding the monsters, I need some cheats. I need a few packaged, easy to prepare, low brain power items for those mornings I simply cannot cope.  You know, Mondays.  And possibly Tuesdays, depending on how bad Monday was.

My new friend in GF world has become Gluten Free Bisquick.  I bought it on sale, thank-you Sobey’s, and thought it might save me from a meltdown someday.  Yes my friends, MY meltdown.  The monsters will eat whatever you put in front of them, the problem is getting it to them fast enough!! Today was that day, I needed carbs, sweet and fast.

GF Bisquick is made with rice flour, sugar, potato starch, xanthan gum but MAY contain soy.  So, if you are soy free and sensitive, maybe skip this one.  Also, the package suggests keeping it in the fridge once opened.  I made the waffle recipe right on the back of the box and it was glorious.  Perfection.  In fact, I think I might be in love.

Directions suggest 1 1/2 cups of mix, 1 1/4 cups milk (I used soy), 3 TBSP oil (I used coconut) and 1 egg.  I blended the ingredients:

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Dropped them by the 1/3 cup full on to my trusty waffle baker:

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And waited for them to be done. The first four, I cooked all the way through, so I could enjoy them immediately.  The next four I under baked just a tad so they finish cooking in the toaster later.  These babies freeze beautifully!

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A little coconut oil on top and some maple syrup and I was in GF Waffle heaven.  Love, love these waffles.  My only complaint? The package is pretty small, so probably 2 batches and it’s done.  But, it’s a small price to pay for convenience and bliss. Happy Monday!

 

Things that Suck

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I’m feeling a little sorry for myself today.  I woke up with clearer skin on my front and itchy, rashy, miserable skin on my scalp and back.  It sucks.   I try really hard not to complain, not to be negative and to find the positive side of everything.  To be honest, I’m just not feeling it today.

Dermatomyositis sucks.  There I said it.  It’s ugly.  It’s itchy.  It causes otherwise perfectly polite people to stare, in horror at my skin and ask all kinds of (honest) questions.  I spent the entire summer last year agreeing that “yes, I do have a very bad sunburn” (I did not) or explaining that I suffer from a rare auto-immune disorder.  Neither one is any fun.  On the one hand, you have people thinking you must be some kind of a moron to go out in the sun without sunscreen.  On the other, you are sharing your personal medical history.

It also sucks because of my poor, sensitive hands.  I can hardly take plastic cards out of their slots in my wallet.  I can’t keep my nails anything longer than freshly trimmed because I scratch in my sleep.  I can’t get the cards out without their sharp edges digging into my very sensitive cuticles.  I’m currently on a mission to find a wallet where I will be able to manage better.

It sucks because I don’t sleep well.  I don’t feel well so I can’t sleep.  I don’t sleep, so I don’t feel well.  What a vicious cycle.

It sucks because I have to wear SPF 50 sunscreen ALL. THE. TIME.  In winter, on cloudy days, in the car, in the office. The methotrexate makes me even more sun sensitive apparently.  Great, a disorder that dislikes the sun coupled with meds that really, really dislike the sun.  I feel like a vampire.

It sucks because even when I wore a UPF rash guard, long pants, a hat and sunscreen but didn’t wear gardening gloves, my hands broke out in one of the worst rashes yet.  The rest of me was ok, but my poor hands.  Sigh.

It sucks because after a year of treatment, nothing has worked.  Once again, I am having to experiment because the doctors have no answers.  I hate being a guinea pig but I’m willing to try anything.

Ok.  Enough misery.  I’m alive.  I have friends.  I have family.  I have meaningful work.  I have enough of what I need and am fortunate in so many ways.  I have an auto immune disease but I live my life the best way I know.

Happy Methotrexate day.  Hope it brings us both some relief.

All Those Vegetables!

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As I journey along the Wahls Protocol, I find myself eating a wider variety of vegetables than ever before.  For instance, I had never tried kale, beets (other than pickled, yuck), or leeks.  I have always enjoyed my veggies, it’s just that I tend to stick with peas, carrots, broccoli, corn and cauliflower.  My kids think they’ve won the lottery when I serve broccoli (they are weird, I know) so I guess I must have done one thing right as a parent.

The point though, is that the seemingly never ending need to eat 9 cups means I get full or bored, sometimes both, of eating my vegetables.  I’m not ready yet to go totally into Wahls Paleo, though I am trying to incorporate more animal protein, particularly the fish.  I saw a suggestion to use smoothies to fit in the greens, and that my friends, has been a lifesaver. 

Next tip, soup.  I love leek soup with mushrooms, garlic, onion and bone broth.  Broccoli and cauliflower soup are also great choices to get in those sulfur rich vegetables.  A cup with lunch, a cup with supper and I am well on my way.

Newest tip – veggies and dip.  I adore veggies and dip to eat up all the coloured vegetables.  Mashed avocado and a bit of lemon juice and salt makes a tasty dip for carrots, cauliflower, broccoli, mushrooms (sulfur!), peppers and peas.  I like my vegetables raw as much as possible.  I’m not sure Dr. Wahls cares, it’s just my preference. 

How are you getting in your 9 cups?

 

 

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