High Profile Sjogren's Patients Working Together

So great to see other patients working together.  I know for me personally having high profile patients such as Venus Williams talking about Sjogren's has made it much easier for me to explain the disease to others.  Venus helped professional soccer player, Stephen McPhail, get to a new doctor whose treatment helped prevent him from retiring.  He's back playing again.  Read More below:

Sheffield Wednesday: How tennis ace helped McPhail

Stephen McPhail’s career is back on track after his signing for the Owls - and Dave Jones is not the only one to whom he is grateful.

Tennis star Venus Williams helped him to ditch thoughts of retiring and cope with an incurable disease.

As if winning a three-month battle against lymphoma, a blood cancer, four years ago was not enough, McPhail still has Sjogren’s Syndrome, an immune-system disease.

Williams is the only other sports personality in the world who is known to suffer from it.

He takes up the story: “I didn’t hide the fact that I’d been diagnosed with lymphoma, I had three months’ treatment: radiotherapy and an operation, and played after that.

“I’m lucky enough to have been all clear of the lymphoma ever since; hopefully that will continue.”

His Sjogrens problem became public last year - with that, the body’s immune system attacks the salivary glands, which can cause various symptoms, and it is a condition related to the lymphoma.

“There no cure for the syndrome,” says McPhail. “It’s under control. I have treatment every six months for a day, in hospital. It doesn’t keep me out of training for more than a couple of days.”

Like him, tennis ace Williams has continued her career in spite of it. Says McPhail: “At my house the phone rang and she was on the other end of the line. It was strange to speak to such a superstar; I knew it was coming; my agent had put me wise to it. I spoke with her for more than an hour, just exchanging stories and talking about where we were the syndrome.

“I’ve had some texts and good-luck messages since then. We have both continued playing and enjoying life.

“She’s a super woman, so easy to talk to.”

At one point he had thought of quitting: “I had two months where I just couldn’t get to grips with it. I was breaking down all the time; I was ill, not myself. I lost maybe a stone in weight. I just felt crap.

“She (Venus) put me in touch a doctor in Los Angeles; I flew out there with the physio for a couple of weeks. He gave me a course of treatment that I’m still on.

“It’s calmed the syndrome down and given me the chance to lead a normal life, which is good.”

Food Allergy Envy Turns into a Frittata

I admit it.  I am envious of people without food allergies and restrictions.  When I join my friends and family for dinner and I can't eat anything, I secretly drool over what their having.  I crave all sorts of foods that I used to be able to eat: Indian, Thai, Mexican, Italian, and especially Chinese.  Sometimes I wish that I had never tasted these foods so I wouldn't know what I am missing.  I yearn for the days when I could just pick up take out food or order a pizza without preparing a meal for myself.  

My food allergy list has only grown longer over the last five years.  I am convinced this is all related to my immune system just being plain old dysfunctional.  It doesn't make sense otherwise that a healthy young women would suddenly develop serious autoimmune diseases and food allergies all around the same time, but that's another story.

Sometimes this envy isn't all bad.  It can lead to creativity in the kitchen on occasion.  The other day we had a couple family members over and they were munching on all sorts of snacks that I can't eat.  My corn and onion allergies are the most difficult and prevent me from eating many foods. I try not to take any risks.  There is nothing scarier than having an allergic reaction and I especially hate when it happens in front of other people. For some reason, I also find it a bit embarrassing and I try to do my best to hide it.  This can be quite hard when my mouth or face starts swelling.  I just don't like the attention.

So while our guests were eating away, I decided to make something that was appealing and safe to eat.  I chose to experiment with making a small frittata for one.  A dish I had never attempted before and one that is conducive to using a variety of ingredients.  That means that as long as you have eggs, it's likely that there will be other vegetables or protein in your fridge that will work just fine.  That day I had a variety of yellow, green, and orange bell peppers and some leftover smoked salmon .  All seemed like they would well with my dish. Now as usual, I didn't follow an exact recipe.  I always find cooking more exciting if I improvise, but here are the basics of the ingredients I used and the gist of what I did.

Ingredients:

Yellow, Green, and Orange Bell Peppers

Smoked Salmon

Three Eggs

Greek Yogurt

Salt 

Pepper

Approximate Instructions 

1. Chop vegetables of your choice and saute in olive oil until they begin to soften

2. In a separate bowl whisk three eggs

3. Add a tablespoon or two of Greek or plain yogurt to eggs and continue to whisk

4. Add salt and pepper

5. Butter or oil oven safe baking dish to prevent sticking

6. Put desired vegetables and protein in oven safe baking dish  

7. Pour egg and yogurt mixture over vegetables and cover with aluminum foil

8. Place in oven at 400 degrees for approximately a half hour or until set. Remove aluminum foil for last last 5 minutes or so of cooking.

  

Leave it say my first mini-frittata turned out unexpectedly well.  Crisp and brown on the edges and the best part is that I didn't spend the rest of the afternoon drooling over what everyone else was eating.  

For others with food allergies, how do manage your cravings for foods that you can't eat?

Spontaneity, the Sun, and Autoimmune Disease

The Offending Blackberries

Last weekend, my husband and I partook on one of our favorite weekend activities -- a day trip drive outside the city.  These have become part of our routine during warmer months. Day trips are easier for me in many ways than overnight ones that require more planning in terms of medicines and preparing foods that I can eat.  But unfortunately, I was again reminded that spontaneity and autoimmune disease are incongruous.  I know many of your have had these experiences where you forget for a just for a moment that you have autoimmune disease and there can be consequences.  Well, that's exactly what happened to me.

The story goes like this.  We were driving along in the country on a clear late summer afternoon.  We decided to a stop by a farm stand for an afternoon snack.  It was supposed to be a quick stop just walking into a building so I didn't think to take my sun protection armor along.  As we were about to pay for our fruits and vegetables, I noticed that someone was leaving with blackberries.  I wanted some of those -- they looked plump and delicious.  I was hungry and it was heading towards the end of berry season. I didn't know how much longer I'd be able to get those treats. So I inquired about how to get them and it turns out you had to pick them yourself.  

I had never been blackberry picking before and at the time it seemed like a great idea.  Something new to try, a bit of adventure for a Gal who has been pretty limited by her autoimmune disease.  Off my husband and I went blackberry picking.  It was not that thrilling to be crawling around picking the berries, but I did feel a sense of accomplishment when we finished.  I had put in some effort to get those berries that we were driving home with.

But, no, our story couldn't just end there. A few minutes after we got back to the car, I started to feel fatigued and weak. Like I had been run over by one of the farm tractors we had just seen.  The sun had gotten the best of me even though it was a mere half hour outside in the late afternoon.  My husband and I immediately realized that I had not been wearing my hat or long sleeve cover to protect me from the sun.  We had been truly living in the moment -- a rare occurrence but one that does not always work out so well.  

The next day I was bone tired and every joint in my body ached.  Walking was difficult and I spent a full day on the couch just resting as my body demanded.  I had no choice in the matter.   By the following day, I started to slowly recover. I was extremely lucky this time. I've had sun induced flares that have lasted a couple months. Boy, I am glad it seems this time I escaped.

Were the blackberries so delicious that it made the whole experience worth it?  They were good, but not good enough to make a mini-flare worthwhile.  When I'm feeling better I always want to do more. People, and seemingly endless articles I read, say you should "forget about your diseases" and "just go for it…you'll feel better."  I sometimes try. But what they don't understand is that when I do, there is all too often a real cost. 

Preventing Lyme Disease Déjà Vu

Tall Grasses Can Be A Tick's Favorite Habitat

Ah, creepy, crawly, and flying critters. The unsung fun of summer.  I'm hoping this year it will turn out that I have gotten the better of them.

I am recently back from vacation and I'm really hoping I didn't get any party favors from the wild this time. Not like last summer,  as some of you may remember, when I came home  from vacation with a not so pleasant surprise -- Lyme disease.  (You can read about that little adventure here.)

I have to admit that while I was in area known for Lyme Disease last August, I did not take enough extra precautions to prevent tick bites or bug bites in general.  Up until that point, I had been lucky enough to live and vacation in the Northeast for most of the last 30 years and never contract Lyme. Little did I realize that Lyme is now everywhere in the region.

That said, it wasn't laziness or a feeling of over-confidence that prevented me from taking extra precautions. I wasn't sure what to do about bug spray.  I had always used sprays with DEET, but with autoimmune disease and extensive allergies, I became concerned about using strong chemicals.  My doctor even advised me to avoid DEET if possible, but didn't suggest any alternatives to use. That obviously wasn't very helpful advice. And unfortunately I over-compensated; I was not smart and just went without insect repellent altogether. This year that wasn't an option.  My doctors expressed serious concern about me contacting Lyme or another insect born illness again.

So over the past few months, I've made insect protection a priority. My go-to has been All Terrain Herbal Armor Insect Repellent.  It's a DEET-free spray containing a number of oils such as citronella and lemongrass that are supposed to be effective bug repellants. It did not cause any skin irritation problems and worked well.  I've actually been hiking in the woods and come back without any mosquito bites. The solution has a woodsy smell, but nothing too over powering and certainly there is no chemical odor. Would I wear it as a perfume? No, but the smell did not deter me from using it. I prefer the smaller 2 ounce bottle so it doesn't add to much additional weight to my purse, which is already chock full of essential meds and EpiPens.

I also experimented with the Badger Balm Ant-Bug Balm.  It's ingredients are very similar to the All-Terrain with a few small differences.  The Badger Balm contains rosemary oil and the All Terrain has soybean and peppermint oils. While they worked equally as well, the Badger Balm's smell was a little too much for me so I tended to use the All Terrain more often.  This is probably just a matter of personal preference.  With both of these natural repellents, it is much more important to cover every inch of exposed skin to prevent bites than when using DEET.  I also found re-application to be essential at least every two hours.  

Natural insect repellent was not my only strategy to prevent getting Lyme or West Nile.  I tried to be vigilant about keeping myself covered when outside in wooded areas or those with tall grass. This meant trying to wear longer pants like capris (as opposed to shorts and dresses), sneakers, and socks that went above my ankle.  I have to keep as much skin covered as possible to prevent autoimmune flares in the sun so adding bug protection to my routine wasn't really a major change.

While I wasn't prefect all the time--sometimes I did find myself in the grass with flip-flops on--I was definitely much more cautious than last summer. I'll soon found out if my precautions worked and I was able to prevent those tiny critters from transmitting anything to me.

*I have no relationship with any of the companies whose products are mentioned in this post*