four diagnoses, four truths

I have a very special post to share today, written by my dear friend and author Abigail Widynski. She has been an inspiration for me in my life and throughout my medical journey. I am truly blessed to have her as a support. Here is her story…

Number four. It came back in the test results about two weeks ago. A forth auto-immune disease diagnosis. Sure, it wasn’t a death sentence. But I wouldn’t be honest if I didn’t say it ruffled my feathers or took me for a trip back down memory lane that I really didn’t want to take.

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It’s a part of my story I don’t readily share. I don’t share even though my daily life is rift with what others may call adjustments and I just call…life! Maybe you can relate?

It’s the part that indeed occupied and now again occupies a great deal of time, energy and emotion. It is also the part that never really had a conclusion or tied with a sparkly, pink bow.

We all have that part, don’t we?

As I’ve had a couple weeks to process and mentally examine my health, past and present, I’ve realized that part of me doesn’t need hidden, isn’t a source of shame and can be a source of strength. Just maybe same goes for you?

I’m going to share with you the four truths I plan on taking with me on my life (and health) journey moving forward…

Denial is Not Nearly as Powerful as Truly Living

As much as I hate to admit it, I have a magnetic pull to denial when it comes to my health. Why? Because during certain periods I thought I had to push through.

Real life story: The summer prior to my moving from the United States to London for business school, I was suffering severely with abdominal pain. Through a process of illness elimination via a myriad of testing, Celiac Disease was suspected to be the culprit two weeks prior to my move. I pushed through and along with life changes, completely altering my diet. Yet, a few months forward, there was an underlying something going on and quite frankly, I was sickly.

I was running hard though and after all, I was in an accelerated business degree program. In between flying back and forth to the States for testing, giving 150% to my courses and colleagues in addition to job searching, I was mid-way through my degree was I received the treatment plan recommendation from my American immunologist: iVig treatment monthly starting immediately. I denied treatment, mentally, physically and emotionally pushing through.

And then after graduation, I couldn’t push anymore. Pushing stopped working for me. I crashed. Sound familiar?

Life had to change. Denial had to let go. And I needed to set a new pace as a gift to myself.

Whereas I used to see slowing down as a weakness, I now embrace the power in recognizing my health ebb and flow isn’t something to deny. I see the power in determining, creating and truly living the life I’ve been given.

My Life is Not Defined By My Results (Tests or Otherwise)

If you received your first diagnosis as a child, you’ll understand when I say this: Waiting comes easily.

There’s something about being a childhood patient that makes living life in ‘waiting mode’ seem normal. It took me a long time to understand that waiting isn’t passive but very much active.

It took a season of utter frustration and asking Heaven for an acronym (literally) before I understood that I can wait actively. Here’s my acronym: Willing Acceptance of Invested Time, or WAIT.

By taking ownership that I can choose how to respond to others, how to spend my time and what new opportunities I can pursue all while waiting, I realized that the results matter less than I ever thought.

It may seem counter-intuitive. But I challenge you, just try on this new thought for one day. See how it fits.

That Miracle Was Meant For Me (and Your Miracle is Meant For You)

I’ve believe in miracles, big and small, more and more.

When I was seventeen, I received a big miracle when my primary autoimmune deficiency went into remission. New horizons opened, literally. I was cleared to travel outside the country to places I read about in the books I’d devoured as a child. Just this one piece of my remission filled me with such anticipation and hope.

My fears decreased also. I wasn’t as scared to come down with an infection because they were further and fewer in between. I knew I was bouncing back quicker.

But not everyone receives a health miracle or healing. And this is where the small ones have impacted me.

In seasons where my health has been less than optimal and my energy low, I’ve been amazed at the encouragement that comes my way. One day, a tourist sat down beside me at the local coffee shop. I’m not sure how the conversation started but soon we uncovered that we’d been at the same ice rink outside of Prague. It may not sound meaningful, but looking back on that day, I needed reminded of a great memory and talk about a shared place with someone. It was a miracle that I didn’t even know I needed, a small miracle. It was meant for me.

And your miracles are meant for you!

A Setback is Really a Setup

If I learned anything in my journey back down memory lane it was that every single setback was really a set-up. Some just took longer than others for me to see the redemption!

As a child, I was in isolation at home for long stretches of time and unable to attend school regularly. A weakened-immune system meant that hospital stays presented greater risk of additional infections than properly treating the primary one.

With so much time at home for several years, I had a front row seat to a master of time management, a baking extraordinaire and a color scheme guru: my mom. At the time, I really didn’t know what I was observing and thought about all the friends I was missing.

Until fairly recently, I thought that those years at home were a set-back and I had a lot of catching up to do, a great deal of life to get to.

Now, I understand that what I thought was a setback was really a setup, my setup. Thanks to learning from the best cook and baker I know, I was invited to the Today Show as a finalist in a recipe competition! Being taught discipline to manage my own school studies and homework at home, I now absolutely love working from home, can juggle quite a few things in my day effectively and just wrote my first book!

There are so many others that I could share but I’ll leave you with this…

Number four may have just been the setback I needed for the setup I’m headed for. And that truth is for us all!

 

Abigail Widynski is an out-of-the-box strategist and connector who is excited by the opportunity to talk about ‘growing things’ and expansion of all shapes and sizes, organizations and people. A finance professional, Abigail is the owner of Sovereign Venture Advisors and founder of the Sovereign Venture Philanthropy Fund. Abigail holds a M.Sc. Management from Imperial College Business School in London and a B.A. in International Studies from American University in Washington, D.C. Abigail is proud of her debut book, Making Money the Millennial Way, which was widely released in the United States and Europe in January 2015.

going dairy free

For the past year, I have really been cheating with dairy in my diet. Come on people, I’m Italian, so it’s really difficult to not add parmesan to my pastas or brie to my salami and crackers. And lately, I’ve been noticing that my new medications are not mixing well with the cheese and ice-cream.

So I’ve decided to go dairy free from now on.

I was doing some research and it says that rheumatoid arthritis symptoms may flare as a response to specific proteins found in dairy products. Dr. Michet’s research says that “Some people with rheumatoid arthritis who report intolerance to milk have antibodies to milk proteins. The body forms these antibodies to protect itself from what it mistakenly perceives as a harmful substance, but the antibodies attack other parts of the body in addition to the milk.” Dairy products are also known to create a sort of brain fog for people who have an intolerance. My symptoms also include the pains in my gut.

The good news is that I found a new cook book “Against All Grain” that I’m thrilled to start using for my new dietary restrictions. The author’s name is Danielle Walker and she was diagnosed with an autoimmune disease at the age of 22. Now as a mother, she wants to eat more paleo, meaning she cooks gluten-free, dairy-free and legume-free.

Here are the main culprits I have to replace in my diet:

  • Milk = substitute with almond milk (or try to make your own almond milk!)
  • Cheese = on those days you just need cheese, try a little goats cheese instead of cheddar (I’m going to have to eat my gluten free pizza once in awhile though!)
  • Yogurt = greek yogurt is a new trend, but instead of eating egg salad or chicken salad for lunches made with greek yogurt, try hummus and veggies instead!
  • Ice cream = this is going to be the most difficult, but I can try making homemade cookies or sweets instead

Wish me luck!

new year, new me

What a whirlwind of 2014! Our house is amazing and everything people say about a house sucking up your time and money is true! But we are very excited about making it beautiful. Our fall was packed full of festivities, with a housewarming party, my 30th birthday (eek!) and the holidays with both of our families. We also were saddened by a couple of funerals we had to attend, one for a very beloved Grandfather, and another for my wonderful cousin who left us too young.

But CHEERS to a brand NEW YEAR!! I’m ready to take this year on and I hope you are too!

Remicade seems to be kicking in after about 5 months. The only negative I have experienced is that it gives me headaches. I usually get an instant headache during and after the infusion. The nurses say this is a histamine reaction, which is why they suggest a Benadryl or Claritin before the infusion. And red wine is the other culprit — apparently the Remicade does not like alcohol, so I have gotten extreme migraines the day after a glass of wine that cause me to vomit. So beware if you’re taking this too!

Although Remicade is working much better than before, it still does not help the minor flare ups and swelling that Rheumatoid Arthritis causes randomly. So my doctor has suggested Sulfasalazine as another medication to assist with these flares. It was one of the first medications to reduce or prevent further joint damage in patients with arthritis. When I went to fill the prescription, I read the inactive ingredients as I usually do and realized that I would not be able to take the brand name drug. Luckily, I have an amazing compounding pharmacist at Walgreens who ordered the Sulfasalazine powder and created capsules with nothing else in them.

If you also have some reactions to inactive ingredients in medications, don’t hesitate to ask for a compounding pharmacist at your local Walgreens. Most states have at least one location with a specialty pharmacist on staff. They can also answer questions for you about medications and help research inactive ingredients until they find a suitable medication for your needs.

 

figuring out the right Rx for you

It has been awhile again, mostly because WE BOUGHT A HOUSE!!! But also because I am still trying to figure out the right prescription for my symptoms.

Back to the house…it’s a dream come true! We just love our neighborhood, we’ve already made friends with some neighbors, and we are excited for all the potential it has for remodeling. The past month has been packed with moving, unpacking, painting and doing heavy maintenance on the house. My body has been exhausted and sore in ways that I’ve never experienced, but it’s worth it.

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The other battle I’ve been fighting at the same time as all of this change is my medication. I decided that Orencia was not going to work for me. It never “kicked in” like I was hoping for, and after 7 months, I should have noticed some improvement in my pain levels.

All I can say is don’t give up. There are so many biologic medications to choose from, that one of them is bound to work. So my next attempt is Remicade, which is related to the Enbrel and Cimzia family. The good ting about Remicade is that it has the flexibility in frequency of infusions and dosage amount. So my doctor is able to change my injection dates if necessary, or my dosage if necessary, until they find the right balance for me.

Only bad thing about Remicade is that it can cause allergic reactions much easier and your body can reject it at any point. So I take Claritin or Benedryl with the infusion each month and just make sure my antibodies don’t grow against it. Otherwise, we will see how it goes! I can already tell that the infusion is helping faster than Orencia ever did. Fingers crossed!

I’d love to hear about your experiences with Remicade. Find me on Facebook and comment!

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the walk to cure arthritis – denver

Help me raise funds to support the Arthritis Foundation and find a cure for arthritis!

I joined the Walk to Cure Arthritis because I am one of the more than 50 million people who live with arthritis. I was diagnosed 4 years ago with Rheumatoid Arthritis and have been struggling with Psoriasis since I was a child. I am ready to help find a cure for these debilitating auto-immune diseases, to help the millions of people and over 300,000 children who are in pain on a daily basis.

Join me at the walk on May 18th in Denver, or donate to the Arthritis Foundation today!

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Your donation today will help fund arthritis research, education and community programs and get us closer to a cure for the millions who suffer from this debilitating disease. Thank you for your kindness and support!

See more at my personal donation page! Or join my team to walk with hundreds of people affected by arthritis on May 18th.

 

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giving back

I recently found a way to give back to a good cause by doing what I love. The Arthritis Foundation was looking for volunteer committee members and I thought this was the perfect fit since it is close to my heart and my everyday life.

When I went to the first committee meeting for the Denver Arthritis Foundation Walk to Cure Arthritis, they needed a designer and social media expert to volunteer time to the cause. So I have been giving my time the past couple of months to fundraising, spreading awareness and updating social media for the Walk to Cure Arthritis 2014 in Denver.

WTCA Facebook cover image rev for redesign

The Walk to Cure Arthritis raises funds and awareness to fight the nation’s leading cause of disability. We aren’t just helping the millions of people who live with arthritis pain, we’re funding research that’s getting us closer to a cure. This year, the focus is on the CURE for arthritis, since many people don’t understand that arthritis, rheumatoid arthritis and juvenile arthritis are chronic diseases and are very difficult to live with.

The Denver Walk to Cure Arthritis is at Washington Park on May 18th this year and features a three-mile and one-mile course. Pet owners are encouraged to bring their dogs to enjoy the pet area, sponsored by Toyota. And there will be a children’s area sponsored by the Colorado Rapids.

Let’s walk together, support each other and raise funds to find a cure for arthritis! Register Today

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just ask

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I know it has been awhile since I’ve posted, but I’m back! And 2014 is a new year!

A little recap of the last 6 months: I moved to Denver in May; I picked up a cooking hobby over the summer and I hope to work on my very own cookbook in 2014; my boyfriend was in the hospital for a week from an a-typical pneumonia (poor guy); I was scuba certified in September, so it’s about time to plan that exotic getaway with my man in 2014; I had foot surgery on both feet to remove some rheumatoid nodules in October; I had to get pre-melanoma cells removed on my back in November; and then the very busy, but amazing, holidays! It has been quite a 2013, and I am looking forward to a fresh start.

Speaking of a fresh start…I changed biologics in September to treat the Rheumatoid Arthritis. I was taking Cimzia, which was a self-injection biologic similar to Enbrel, but it wasn’t quite hitting the spot. I was still swelling and having to take Aleve like it was candy. So my new Rheumatologist, Dr. Zachariah at the Colorado Arthritis Center, wanted me to try Orencia. This is a different type of biologic that works early in the rheumatoid arthritis inflammatory process at the T-cell level, reducing the activity of the T cells, which reduces the activation of other cells in the rheumatoid arthritis inflammatory process. I also take this biologic as infusion once a month, so a lot less hassle.

Only downside is that it could take up to 6 months to “kick-in”. I started Orencia in September and after 4 months of infusions it is just starting to work for the pain and inflammation. In the meantime, my doctor prescribed me anti-inflammatories and some pain medication for overnight when I just couldn’t handle it. I’ve noticed that I don’t need as many anti-inflammatories (Diclofenac) after the last infusion on the 2nd, but I am still swelling, just not as much pain. So the doctor has also prescribed me Hydroxychloroquine, originally an anti-malarial medication that also treats auto-immune diseases such as lupus and RA.

And here’s where I get to the “just ask” part…I went to Walgreens and asked for the inactive ingredients for the Hydroxychloroquine tablets. NOTE FOR GLUTEN-FREE READERS: This is something I always do at a pharmacy. You can ask for the pamphlet that came with the bottle and search at the top of the page for the ingredients and inactive ingredients breakdown to check for gluten! Unfortunately, the tablets they stocked included pre-gelatinized starch, but this is vague. Starch can come from any source, some gluten-free, some not. So I asked the Walgreens Compounding department about creating a gluten-free version, but they were not able to order the active/main ingredient for me. So my last resort was to call the Manufacturer.

I sent an email and also left a voice message for the US Ranbaxy Pharmaceuticals location. I had Walgreens send me the NDC#, name and dosage so I could ask exactly what the pre-gelatinized starch source was. Within 24 hours, they called me back. Can you believe that?! Good news is that the source of the starch is corn so I can take the generic Hydroxychloroquine, as long as it is from Ranbaxy as the manufacturer.

So don’t forget, if you’re worried about the gluten in a medication, just ask your pharmacist and ask the manufacturer. They can actually be very helpful!

my gluten-free hobby

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Some of us with an auto-immune disease have to follow very specific diets because our immune system has weakened our digestive system. But living a gluten-free and wheat-free lifestyle hasn’t been all that bad the past 6 years.

According to the National Foundation for Celiac Awareness, gluten-free diets are common with most auto-immune diseases, thyroid diseases and even autism. “The gluten-free diet is the fastest-growing nutritional movement in America,” and in the past few years, it has become a huge trend. This makes it a lot easier to find foods and baking flours that are gluten-free on the shelf of most grocery stores.

The newer Paleo diet has also shown many improvements for those with autoimmune diseases. “Adhering to man’s natural diet has the potential to restore many necessary functions of the body and, by report, halt autoimmune disease symptoms in many.”

Lately, I have taken on the hobby of finding various paleo and gluten-free recipes (mostly on Pinterest) and trying them out. Because of my restricted diet, I usually cook for myself at home and it could be easy just making simple salads all the time. Instead, I have made cooking one of my favorite hobbies of the day! My boyfriend usually can’t even tell the difference.

Check out some of my favorite recipes: “Scrumptious Foods” Pinterest Board Enjoy!

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