The Diagnosis : It's Not Rheumatoid!!!

When I first admitted to myself that something was wrong, and I started to suspect arthritis as the culprit, I was scared. What if it is Rheumatoid Arthritis? I kept quiet about my symptoms for months because I preferred to play the ostrich with my head in the sand, hoping the stiffness would just go away. Rheumatoid Arthritis conjures up, at least in my head, images of mangled fingers that look rather useless. I admit I was terrified by the thought of such a potentially disfiguring disability.

At the end of 2009, after several months of mild stiffness, I mentioned my concerns to my family doctor while I was there for my annual physical. He did not ask a lot of questions. He never suggested sending me to a specialist. He seemed unconcerned.  He did order blood tests for me though.

Weeks passed. Then months. How long did it take to get test results back? What were the blood tests looking for? Would they only contact me if they found something wrong? Oh, the questions I should have asked in retrospect.

Then the stiffness went into remission. I forgot about worrying about the test results and for a few months in 2010 I started to believe that I had beat whatever was afflicting me in 2009.

By the fall of 2010 however, the stiffness had returned with a vengeance and this time it brought with it debilitating fatigue. I no longer had energy for extra-curricular activities anymore. I was visibly suffering at work. My stiff joints began to burn. All I wanted to do was cry all the time, I was so tired. I had no choice but to reiterate the symptoms to my family doctor in the summer of 2011.

By this time my family doctor had retired and I had switched over to my husband's family doctor. She listened to me and asked lots of questions. She came across as more concerned than the first doctor did. She insisted on another round of blood tests and sent me for X-rays on my hands. She also made me an appointment with a Rheumatologist.

Now it took months to get an appointment with a Rheumatologist (where I live it did anyway). During my four-month wait I was self-diagnosing myself via the internet, and reading all the worst-case scenario stories out there about Rheumatoid Arthritis. I mourned my ability to do anything. At the same time I also came  across information on Psoriatic Arthritis, a term that I had never heard before.

I had Psoriasis as a child, embarrassingly flaky skin on my elbows, but it mercifully went away in my first year of high school and I had never given it another thought into my adulthood. Until now. How a flaky skin disease morphed into an auto-immune arthritic disease was beyond me, but was it possible that I had Psoriatic Arthritis rather than Rheumatoid? I crossed my fingers. I considered Psoriatic Arthritis to be the lesser of two evils.

When I finally had the opportunity to sit down with my Rheumatologist in November 2011, she went over my test results with me. The bad news:  the x-rays of my fingers showed signs of joint damage from my body attacking itself. It was definitely auto-immune.  The good news:  I tested negative for the Rheumatoid Factor, a blood factor associated with R.A.

It was not Rheumatoid Arthritis. I breathed a sigh of relief.
I was indeed diagnosed with Psoriatic Arthritis. It was time to fully discover what that meant.

Gluten Free : Week One, The Results

I have been eating a gluten free diet for a week now - ten days by the time this particular blog is actually posted-  all in the hopes that the new diet will reduce the levels of joint inflammation I suffer from as a result of my psoriatic arthritis. The results are in and I am happy, no, ecstatic to report that my levels of inflammation are noticeably down. The fires burning up my arms and my legs have been reduced to glowing embers. YAY!!

I never would have imagined that something as simple as bread or pasta would be worse for me than a glass or two of wine.

Not only has the inflammation been reduced, but another wonderful side effect is that I now have more energy. Equally problematic to the pain and inflammation in my psoriatic arthritic world is the struggle against chronic fatigue. Ultimately it was not the pain and inflammation that forced me to the doctor last year, but the continual physical exhaustion-to-the-point-of-tears fatigue I was constantly fighting.

In the last week, by afternoon I'm finding that I feel so good, I can almost kid myself into thinking I am healthy. I am also more focused and more aware of life around me because my mind is not so clouded and preoccupied with thoughts of the disease.  I am happier because I have more energy and I have more personality when I am feeling good and energetic.

But changing my diet has by no means cured me. With the inflammation reduced, the actual stiffness of the joints is more noticeable. Even though my exhaustion is reduced, I still tire easily after an eight hour day on my feet. Any middle-of-the-night or early morning wake ups are still a painful struggle with stiffness.  Nor has the diet reduced my morning 'thaw out' period. It still takes a solid hour every morning for my limited flexibility to return to me.

This morning I am suffering. My joints are inflamed, and I am physically exhausted. My arms and legs feel like led weights and my feet are throbbing. I am definitely not looking forward to going to work this afternoon. I work in retail. This means I am on my feet for eight hours a day. This means I am in the public eye. I work in a home decor store, which means I move furniture, process merchandise, build lamps, and carry mirrors and other heavy objects. In a nutshell, my job is physically demanding.

I am not sure if today's suffering is a simple 'flare up' or if this is a side effect from the BBQ sauce I indulged in last night. Upon further research, I discovered that the sauce includes malt vinegar as an ingredient. Turns out that although most vinegars are gluten free, malt vinegar is not.

If it was in fact the sauce that led to today's suffering, I find it kind of crazy and kind of scary that two tablespoons of a dressing can so utterly destroy me overnight after a week and a half of feeling energized and focused, flexible and un-inflamed.

Today is a reminder of my 'norm', how I have felt daily for the past year and a half. Today is a reminder as to why I am making lifestyle changes. Today reminds me not to take the way I have been feeling for the past week or so for granted. So as upset as I am about giving up spanakopita and donuts, my disappointment is far outweighed by my desire to feel as healthy and capable as possible. I want to move like and feel like a thirty-five year old again.

Gluten Free: Week One, On The Menu

So I survived the first week of my gluten free experiment. I am happy to report that it was easier and yummier than I had anticipated. My willpower has certainly been tested, but I held my ground and did not cave once.

My biggest concern about this lifestyle change is the amount of time I am spending in the kitchen has easily doubled. I am cooking and cleaning when I want to be sitting at my computer writing my novels and blogging. I need to find a way to rearrange my time to schedule some writing so it doesn't get lost.

But I am writing now, so here I give you a quick breakdown of my first gluten free week.

Day one: I made a gluten free, dairy free macaroni and cheese recipe I found online. (I will post the recipe later when I can make sure the correct people/sites are properly credited).

In my attempt to reduce my dairy intake I discovered unsweetened almond milk. I am quite satisfied with the beverage and the lack of bovine growth hormone - added bonus.

Day Two: STARVING!!!! I kept eating and eating but I was never full. Note to self: must keep healthy, gluten free snacks close at hand. Dinner was a gluten free rice pasta tossed with a homemade pesto sauce and some fresh vegetables.

Day Three: Still starving.  I made chicken tagine (a Moroccan stew) in the slow cooker. I love my slow cooker. The house always smells so spicy and aromatic when I get home from work.

Day Four: I walked into the lunch room at work to see a box of donuts on the table and got all excited. Until I realized I couldn't have one and my heart sank. Sigh...

Day Five: Even worse, I had the realization that I can no longer eat Spanakopita. I could cry. Thank the gods, I discovered a gluten free recipe for hoisin sauce - (again, recipe to come)...

Day Six: Bought my husband a regular pizza for dinner for a night when I am at work. Every time I see the pie in the fridge I feel a twinge of jealousy. I enjoy gluten free pizza crust, but its just not the same. I miss pepperoni.

Day Seven: For dinner I marinated a piece of salmon in equal parts gluten-free soya sauce, balsamic vinegar, and white wine and dusted it with cumin. Barbecue anyone? I served the fish with brown rice with a squeeze of lime juice, and a side salad.

My post is running long, so to sum up, as I continue my journey (because I will be continuing this journey) I have realized that I need to focus on the foods I can have instead of crying about the ones I can no longer enjoy.

Next post to come : Gluten Free: Week One, The Results.

It's not a diet, it's a lifestyle change

And it is one I have not made yet, until today.

I have always been a relatively health conscious individual when it comes to food. I do not drink pop, fast food is a rare treat, and I keep my refined sugar intake to a minimum.

When I was officially diagnosed with Psoriatic Arthritis in November 2011, and I was barraged with a load of drug options, I wondered if there were any kind of dietary changes I could make to help treat the disease naturally, to minimize my drug intake. I am thirty-five years young and the idea of being on drugs for the rest of my life does not appeal to me. Actually it downright scares me.

I asked my rheumatologist about diet choices and she simply told me that a healthy, everything-in-moderation diet is all I needed to focus on.  Still, curiosity killed the cat. I wanted to consider what naturopaths were saying, so I researched their dietary suggestions. And I cried.  The list of forbidden foods cited by several sources in the natural food world is mind-boggling.

            1. Gluten free - goodbye pasta, pizza, and pretty much all my favorite comfort foods.

            2. Diary free - goodbye Mozzerella, cream cheese, and Brie, sigh...

            3. Meat free - so I guess I am no longer eating those spicy Polish sausages...

            4. Alcohol free - yeah, like I am going to give up my white wine. Hell no....

            5. Caffeine free - Starbucks, I am going to miss you...

            6. Citrus free - goodbye freshly squeezed grapefruit juice

            7. Corn free - goodbye tortilla chips and barbequed corn-on-the-cob.

            8. Nightshade vegetable free - goodbye tomatoes, peppers, and eggplant

Oh I know there are a few more suggestions out there, but this list encompasses everything that tore my heart out.  I was so overwhelmed by it that for the first few months after my diagnosis, I didn't consider making any changes to my diet.

Until July 2012 when I had a serious flare up, days of ups and downs, zero energy along with inflammation burning half way up my limbs. It didn't take long for me to start researching anti-inflammatory foods once again.

After lots of reading, I have decided to cut gluten out of my diet.  And I am going to reduce my dairy intake (I am just not ready to cut dairy yet, baby steps people). As for caffeine, I am limiting myself to one cup a day. I am willing to decrease my alcohol intake, but I refuse to ban wine from my life. Life is just too short to go without wine.

I figure gluten free cannot be as bad as the 'Master Cleanse' I attempted about six years ago, - the lemonade diet where you mix organic lemon juice with cayenne pepper and organic maple syrup accompanied by warm salt water in the morning, and a laxative tea at night. I lasted about twenty hours before I surrendered and threw a pizza in the oven (I am pretty sure it was the caffeine withdrawal that did me in on that one).

So here goes nothing. Won't you join me in my adventures into the world of gluten free? 

Sausage Fingers

Sausages do not bend. Not easily anyway. Wrapping my fingers into a balled fist every morning gives me a good indicator as to how my morning is going to go. Are my joints just stiff, or is there the burning sensation of a flare up to accompany the stiffness? For the first hour in the morning, there is certainly no confidence in my fist's ability to grip anything.

To think I tried to take up golf last summer. Ha! But that my friends is a story for another day...

When the arthritis in my joints flares up, I often refer to my fingers as sausages. It sounds like a description a writer would use to describe a short, fat man's hands in a novel, but it is an apt description for this thirty-five year old, petite blonde, Psoriatic Arthritis sufferer's hands too, my poor fingers inflamed, red, and swollen, kinda useless. Sometimes they are breakfast sausages, sometimes they are those hot and spicy foot-long Polish sausages we buy at our local European Deli down the street.

I write about Sausage Fingers as an introduction to my new blog. For months I have been meaning to start a diary of sorts to keep track of diet, alcohol and caffeine intake, exercise, and weather patterns to see if I can distinguish my inflammation triggers. So here it is. I hope that by keeping a blog about my experiences with Psoriatic Arthritis in co-relation to my lifestyle will motivate me to continue in my quest for the healthiest life I can possibly live. And I hope to share any successes I have in learning to cope with the effects of the disease and minimizing the inflammation with other suffers also looking for ideas for relief.

Perhaps one day I will once again feel healthy enough to attempt to swing a golf club. I mean Phil Mickelson is a pro golfer who has been diagnosed with Psoriatic Arthritis and he seems to be doing just fine for himself on the golf course.