What's to Blame in Sjogren's?

So, I don't pretend to be a scientist but I saw something that I felt I had to share with fellow Sjoggies. 

It seem scientists are finally beginning to understand what may be causing this autoimmune disease.  The culprit may be partially our natural killer (NK) cells.  Sounds like a science fiction movie?  No, it's our bodies.  

So what are natural killer cells? The short version is that they are white blood cells that are supposed to attack bad actors like viruses and tumors.  But for us Sjoggies instead of doing their job correctly, they direct their attacks at healthy cells and target them to die (check out the video below to see how NK cells are supposed to act).  The study I am referring to found that in Sjogren's patients these "killer cells" seem to be having a party.  These cells are more active AND they each have more receptors (called NKp30) on their surface, which are involved in triggering an immune response.  And there's more, scientists also found a relationship between having too many of these natural killer cells and dysfunction of the salivary glands--basically these cells could be linked to the parching, lack of moisture that many with Sjogren's experience.

The good news? If the research is right, scientists may have found one of the major causes of the symptoms that impact us Sjoggies…and the hope (fingers crossed) is that knowledge is power!  That this information may help researchers help us.  Will it be soon?  I have no idea, but I'm so excited to see meaningful research being done on our condition that I want to make sure as many people know as possible. I realize some Sjoggies can run marathons, but for many of the Sjoggies I know that's a dream. Even being able to work is a dream. Perhaps with treatments based on this research or other research, more Sjogren's patients will have the opportunity to realize their dreams without being held back by their autoimmune disease and that's something we can all hope for.

When I'm Feeling OK: The Autoimmune Itchies Come Out

Don't worry this post is is not about some new autoimmune skin condition that I've developed. (I've put a mandatory moratorium on adding any new autoimmune conditions to my list.)  It's about happens when I'm healthier and start to more closely reassembly my old self.  The pre-autoimmune Autoimmune Gal. 

The good news is, this means that I'm feeling what I would consider to be "OK".  I might be able to see friends, lightly exercise, and plan fun activities like going to a museum with my hubbie. I still need to be careful and take the usual precautions, like resting, avoiding the sun and not over scheduling. So would you think in these periods, I would just be grateful for feeling better and embrace what activities I can do.  Alas, it is more complicated than that for me. 

Instead it often goes more like this.  Yes, I do start out feeling appreciative for feeling better. However, soon after a few days of feeling "ok" I begin to get restless and start feeling what I could call itchy.  I start remembering all the things that need to be done that I've neglected for the last few weeks or in some cases months.  There are baby presents to mail (most recently 3 months late!), phone calls to make, medical bills to pay, and records to organize. I want to get them all done in one day.

My itchiness doesn't just extend to basic errands and task lists. That would be easy.  This is the time when I start thinking about the bigger issues and questions in my life...and the role autoimmune disease will play in my future.  I start wondering whether I'll be able to go back to work and still have a fulfilling career.   Will my health be stable enough so that I can work at an actual office? If not, how will I be able to mold my career so that working from home will be a possibility?  In some ways asking these questions I know is a good sign. It's an indication that I have more energy and am not in as much pain. Otherwise I could not even contemplate the possibility of doing more day to day activities and maybe returning to work.  I know I should be able to see any day where I feel better as progress, but a part of me wants to restart my life where I left it a few years back. It's hard not to.

There is of course a bit of risk in having the itchies that I'll try to take on too much too soon.  Intellectually, I know that I need to take small steps before committing to something that will take most of time and energy and could be too much for me to handle health wise.  My first step will have to be small, a move from socializing, maybe to volunteering. 

I'd like to move faster, but I know I can only do so much without risking my health. I know it, but it's still very hard to remind myself when I get the itchies. 

Autoimmune Life: Here Comes the Sun...and the Umbrella?

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The recent heat wave has been really tough on me. Like many autoimmune disease patients I know, I struggle with heat and strong sun of the summer months. This summer, as others in the northeast know, as been particularly bad.  The other day, I walked to the farmer's market before ten o'clock and it was already too hot and sunny for met to be outside.  (I am on several medications, which make my skin particularly sensitive to direct sun then there is the chance of a flare.) The rays of the sun felt like they were burning my skin after about five minutes.  By the end of my twenty minute outing, I felt fatigued, nauseous and my skin was already red. I had to stop in a store for a few minutes on my way home to cool down and make sure I could make it home in one piece. 

This kind of heat reaction happens to me even with the many sun protection measures that I take, which I know are common for my fellow autoimmune friends.  I have developed a pretty reliable playbook:

1. SPF 30 or above sunblock

2. The big floppy UPF protected hat, 

3. Big sunglasses with UV protection. 

4. Staying in during peak sun hours

5. Keeping my arms and legs covered.

It's a short list, but easier said then done. The last one, dressing like it's October, in particular can be annoying when it's already 90 degrees and wearing even light long sleeves can just add to feeling hot.  Staying inside except for later in the evenings has been the only strategy that is full-proof but it is difficult in practice and leaves me feeling a bit antsy.  Who wants to have to stay inside during the summer months?  I love the summer. I have to do enough of the hibernation during the winter.  

So, for obvious reasons I've been looking for a strategy to be outside during heat--if only for short periods of time so I can do at least do a few errands.  I've finally come up with something that helps. It's a radical new invention: an umbrella!  

Of course, I've sat under umbrellas at a pool or on a vacation at the beach, but I had never thought of holding one just walking around in my neighborhood.  I suppose this is what aristocratic women used to do to protect their skin in pre-sunblock days so I'm in good company. I'm not sure why ladies' umbrellas went out of fashion but I'm told they are still very popular in China. Even intuitively it make sense that an umbrella is more effective than a hat in almost every respect.  I've found some compact umbrellas online with UPF protection that should work well both rain or shine.  

If you had told me ten years ago I was going to walking down the street on a sunny day in July with an umbrella I would have thought you were nuts. However, many things have changed in my life since being diagnosed with autoimmune disease. My concern about what I look like walking down the street is far down the priority list.  So, if you see someone walking down the street on a bright summer day with an umbrella, perhaps, like me, it's not that they mis-heard the weather channel, but that they are just taking a walk on the shady side.

Experimenting with Summer Shakes

The weather in the Northeast has been super super hot and humid.  I would say it feels more like I am living in Miami right now with high heat and short thunderstorms almost everyday. This climate is not my cup of tea. I'm a bit like Goldielocks and prefer it to be not too hot or not too cold.

There is however good reason for my preference. I'm sun and heat sensitive, both exacerbating my autoimmune symptoms. Basically, I wilt when I step outside so it has been indoors for me except early and late in the day when the temperatures are only in the 80s.  But that doesn't mean I haven't been craving tropical drinks during this tropical like weather. The problem is that I'm allergic to mangoes and bananas so instead I thought a cool berry concotion might hit the spot.


Now, I didn't follow an exact recipe and just taste tested as I went along.  I've always enjoyed making mixtures and improvising as I cook.  This time I added fresh blackberries, strawberries, blueberries (I only had a few in the fridge), a cup of ice, and a splash of black cherry juice. I included about two tablespoons of milk about half way through blending for smoother texture.  Almond or Coconut milk would be good substitutes.

I do sometimes feel deprived because my food allergies prevent me from eating and drinking many of my favorites.  So I am always excited when I experiment and make something new and delicious. It was definitely cool and refreshing. Maybe a little tart for some, but I wasn't in the mood for anything too sweet.

The best part is that it's super healthy with anti-inflammatory properties, low in calories, and very filling. Filling is important for me since I get hungry pretty frequently. These fruit shakes can work for breakfast, a snack, or dessert. It's also an easy way to make sure you're getting enough fruits and vegetables each day.  I tend to eat enough fruit, but sometimes I skimp in the vegetable category.  I've recently started using the CDC's fruit and vegetable calculator which tells you based on age, gender, and level of daily physical activity how many cups to have in a day. Click here to try it.

I think that this is just the beginning of my blending experiments.  I'd like to try adding vegetables and fruits together for my next round. I'm thinking apples, pears, spinach, and blueberries. The longer term question is whether my health-shake making might cause some improvement in how I feel.  I'm not expecting a miracle, but changes in my diet, like eliminating gluten, have made a large impact before.

As Hippocrates said, “Let food be thy medicine and medicine be thy food”

I would love to hear from others who are smoothie chefs about their favorite recipes and whether eating these smoothies and shakes have made a difference in any aspects of their health.