Friday, July 25, 2014

Happy World Sjogren's Day!

Courtesy of the Sjogren's Syndrome Foundation


Happy World Sjogren's Day! Well, technically I'm a couple days late on this one.  But spreading awareness about Sjogren's should be more than something assigned to a particular day or month of the year.  Like many of you, I want to do my small part to try and make Sjogren's a KNOWN autoimmune disease.

Here are some important tidbits about Sjogren's that are easy to pass along to family and friends:

-Sjogren's is the 2nd most prevalent autoimmune disease impacting an estimated 4 million Americans

-The disease takes an average of 5 years to diagnose.  That's way too long and many patients develop unnecessary serious complications due to disease progression and lack of early treatment.

-Many think Sjogren's is just a disease that impacts the moisture producing glands, tears, and saliva, BUT that is just the tip of the iceberg.

-Sjogren's can impact any organ or body system including joints, lungs, kidneys, blood vessels, digestive and nervous systems. (I've had to include a favorite Sjogren's diagram above and it's not even comprehensive).

-Many with Sjogren's experience debilitating fatigue and joint pain.

-Compared to other autoimmune diseases Sjogren's has been under researched, under treated, and often minimized.  We need to change that!  (Read an excellent article by Dr. Sarah Schafer a physician with the disease to understand how much needs to be done here)

My mantra has become Sjogren's is Serious. I hope others in the autoimmune disease community can help us speed this message as we fight for better diagnosis, recognition, treatment, and care. 

Thursday, July 10, 2014

Sun is My Kryptonite

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Every summer around this time, I have to write my dedicated blog post about the summer sun.  The milder temperatures of Spring are long gone and it is hot hot hot.   This is a tough time for those with autoimmune disease and sun sensitivity.  I know those with Lupus and Sjögren's can find it particularly tough to manage during summer months. Flares, rashes, and exhaustion can all be caused by its rays. 

For me, the sun was once merely part of the background of my summer schedule.  Now, I would say it completely defines how I do almost everything.  It is certainly not convenient to have to be inside between the hours of 10:00 am and 5:00 pm each day and sometimes even later. 

The littlest bit of sun exposure from just walking cross the street (even with all my sun protective measures) can leave me feeling sapped of all energy and ill for a few hours if not more.  So yes, the sun is definitely my kryptonite.  I become completely useless when it gets the better of me.  I am also trying to be as careful as can be because I do not want to get a sun induced flare while pregnant.  A no flare pregnancy is a goal of mine!

I have many necessary sun protection measures in place and each year I add something new to my regimen.  I think this is partially true because my sun sensitivity has gotten progressively worse with each passing year.  Oh, and being pregnant seems to be upping me from super sensitive to super duper sensitive.  

This summer I have come to realize that being in the car on a sunny, hot day can be nearly as bad as being outside.  Now, I'm not the only one outfitted and covered to block those UVA/UVB rays, our car is as well.  I've purchased three car shades which now cover our passenger front seat car window and part of the back seat window as well. These shades at least make it possible for me to be in the car for brief periods on summer days without getting sick (Obviously, this only works when you can sit in the passenger seat).  

Window sun shades are relatively easy to find and are sold at places like Target and Amazon.  I'm currently using a combination of two roller shades and a cling shade in our car (click here and here for examples). I have them placed at weird angles to get the maximum sun protection possible and you can mix and match for what works in your car.  People might think we have a baby on board with all these sun shades, but that won't come for another few months :).

So here is my current compilation of daily sun protection measures.  I haven't even included extra steps for heading to the beach or the pool, but please feel free to add what is helping you prevent those summer sun induced flares and rashes.

1) SPF 30 or above sunblock with UVA and UVB protection -- Remember don't be shy about lathering it on and reapplying throughout the day.

2) Big floppy UPF 50 protective hat -- I love my Wallaroo hat that has held up for a number of years. 

3) Big sunglasses with UV protection -- Since I can't wear contacts due to Sjögren's, I use prescription sunglasses. 

4) Umbrella for walking outside -- And then you're always prepared for a summer thunderstorm. 

5) Keeping arms and legs covered when outside -- UPF clothes are always a good option even though they might not always be the most fashionable.

6) Staying in during peak sun hours especially between the hours of 10 am and 2pm -- For me, it is really closer to 10 am to 5 pm to be safe.

7) Sunshades for the Car -- Mix and match what covers your car windows best and hence gives you the most sun protection.  

8) Stay Hydrated -- While it's not exactly a flare prevention technique, having water with you at all times can help prevent dehydration. It's especially important for those with Sjögren's, who are already dealing with extreme dryness.

Friday, June 20, 2014

Where in the World has Autoimmune Gal been?

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Some of you might have noticed that I haven't been blogging as much.  My twitter and Facebook presence has also dwindled.  But I promise there is good reason for my less frequent communication.

It also happens to be a very exciting and wonderful reason--my husband and I are expecting our first child.  Yes, Autoimmune Gal is pregnant.

We didn't know that having a family would be a possibility given my multiple autoimmune and health issues.  It took lots of communication and coordination with multiple doctors to just plan for the possibility of trying to get pregnant.

Important medical questions and issues had to be addressed.  What medications would I be able to stay on?  Did I need to change medications or lower doses before becoming pregnant or was it safe to wait until a pregnancy was actually confirmed?  How would we keep my autoimmune disease in check, while trying to protect the baby?  Would pregnancy make my autoimmune manifestations worse, the same, or better? And these were just the tip of the iceberg.

With pregnancy many of these questions do not have clear cut answers.  Medicines aren't regularly tested on pregnant women so there is less data than one would like on safety and fetal outcomes.  The doctors have constantly reminded me that if I'm not healthy, the baby won't be either, but this is really tough complicated stuff.  And we've certainly added another big and of course wonderful variable to the careful health balancing act.  

Beyond my autoimmune issues, my pregnancy is super high risk so I'm being monitored you might say within an inch of my life.  I guess you could say I'm super super high risk.   My doctors appointments have more than doubled and every health issue that comes up has to be thought through even more carefully and methodically.  Right now, we're trying to enjoy the pregnancy while keeping our fingers double and triple crossed that everything will be OK.  We know this is such an amazing blessing, but we still have a long way to go.  

So that's my update on where I've been.  I love writing and communicating with all of you and feel like something is missing when I'm not.  I'll keep writing as much as I can.  I know when the baby comes it will be a whole new kind of busy too!