The View From My Window

There is nothing like the first snowfall.  Pristine, white, and untouched snow.  I appreciate and marvel in the beauty.

Then the novelty wears off pretty quickly.   Because once I venture outside into the wind and the cold, I am instantly reminded of my painful joints and nerves.  It's hard for me to navigate beyond my neighborhood in this winter weather.

I'm grateful for the scenery and the view from my window.  But it also means more days inside.  It can feel like forced hibernation.  I don't know about you, but I would be satisfied with just one snowfall each year and then a quick progression into Spring. 

A Flare Has Come Around

Well, I've been absent for a bit with good reason.  It's something many of you are familiar with-- A flare.  

As one of my doctors says " for you flares always starts with the eyes".  My eyes become extra extra dry and uncomfortable (As if they weren't dry enough already).  And then the cascade of other symptoms tend to follow.  The neurological are really the most disabling for me because they are just so darn painful.  Once my trigeminal nerve and eyes are activated, (similar to the article discussed in my last post), reading and writing become a real challenge.  I have to limit my time "using my eyes" because it can only exacerbate the neurological pain.  I enter into prevention mode.  I am always calculating what can I do to prevent my symptoms from getting worse and to give myself some relief.  Because once the pain reaches an 8 or even a 10, it's very hard to get it back to being manageable.  

Keeping my eyes extra moist is one of my strategies against neuropathic pain,and I find the dryness at night to be a particular problem.  Local inflammation of the cornea can stimulate the trigeminal nerve so keeping the surface of my eye as comfortable as possible can at least help minimize my pain.  I've discovered a couple new products that have been somewhat helpful.  

The first, is called Niteeye The Dry Eye Comforter.  It's a disposable bubble bandage that I can stick over my eyes for bedtime.  It creates an airtight moisture chamber so that none of the minimal tears that my eyes produce can escape.  When I take them off in the morning, I can actually see a few small drops of my tears on the clear lens.  I still use my regular night time gel and then put the dry eye comforter on.  They are a bit difficult to order and  the least expensive way is to call the manufacturer directly and order a box as explained on the Dry Eye Shop website. The negative, of course, is that they disposable so the cost can add up over time. I do only tend to use them when my symptoms are particularly bad. 

Dry Eye Comforter

I've also tried the Quartz Nighttime Sleep Shield.  These I've had less success with mostly because I tend to rip the goggles off in my sleep.  That means I only have the eye protection they provide for about half the night.  My head is also pretty small so unless I adjust the band to be very tight, they can become loose easily. I was actually able to purchase these at a my physician's dry eye shop for about half the price listed online.  I've heard that many have had good success with Tranquil Eyes Goggles made by the same company.  These provide the benefit of having moisture pads that can be inserted and in the more expensive models silicone beads that can be made hot or cold depending on what works best for your symptoms.  I just haven't tried them yet. 

Quartz Nighttime Sleep Shield

They both make me look an alien when going to sleep at night, but this is the least of my concerns. Less pain and discomfort is my goal right now.  I'm going to try to keep writing when my health allows and they might just have to be shorter posts.  It will be a bit of an experiment, but so is this whole autoimmune journey. 

What are your go to products during flares that provide some comfort and relief?

"A New Dawn for Sjogren's"

Wiki Commons: Sun Rising at Dawn

It was a good week for Sjogren's!  Three important articles that I saw in just one week.  I'm always pleased when I see more scientific research and attention being brought to the disease for us Sjoggies and I do hope this is a trend. "A New Dawn for Sjogren's":  I couldn't resist the headline from The Rheumatologist.

This article was particularly relevant to me since it linked Sjogren's and inflammation to local neurological pain. As most of you know, I have significant neurological symptoms with my disease. For a long time that was a real problem. Neurologists couldn't figure out what was wrong me and I ended up being prescribed pain drugs and basically told to go away.  There was not a perceived link between the pain and Sjogren's. This article goes in to how the symptoms that are often talked about as "benign" such as dryness, muscle and joint pain, fatigue, and brain fog to name a few can be the most pernicious.  As the authors Robert Fox, MD, PhD and Carla M. Fox, RN write:

In order to make a significant difference in the quality of life for patients with SS, new therapies must not only improve extra glandular manifestations of SS, also alleviate the symptoms (fatigue, dryness, and pain) that lead to patient disability….This will require better cooperation between rheumatologists and experts in the field of neural pain circuits. With a more focused effort, the complex interplay among immune, neural, and hypothalamic pathways in SS may finally be unraveled.

I've always known there was a link between my pain and the Sjogren's, but seeing a researcher detail it and call for new therapies is really welcome and I think may be helpful for others.  I would encourage anyone if you find an article with new research relevant to your symptoms, print a copy and take it to your next doctor's appointment. In my experience, bringing articles like these to the attention of my doctors helps them treat me. 

Given how many we are, the actual dollars spent relative to other conditions is still disappointing to me, but perhaps these announcements and calls for more research over the last few weeks represent a new trend! At least I can be optimistic they will help raise awareness among doctors, scientists, and patients that could really lead to "A New Dawn for Sjogren's" and some relief for us in the not so distant future. At least that's what I'll continue to pray and advocate for everyday.

Celebrating A New Diagnostic Test for Sjogren's

Long Shen, Ph.D. and Julian L. Ambrus Jr., MD

It looks like there's an exciting development to share about diagnosing Sjogren's. There's a new diagnostic panel called Sjö(TM) being made available that includes biomarkers for the disease.  Hip hip hooray!  The hope is that these tests will help reduce the long time to diagnosis that so many patients endure.  It's close to 5 years for the average Sjogren's patient and I've talked to many where it's taken significantly longer.  You can read more about this exciting news here.

The Sjogren's Syndrome Foundation will be partnering with the test's distributer (Nicox) to educate eye doctors about this autoimmune disease (AI disease) and the new testing available.  As many of you know, my motto is that "Sjogren's is more than dry eyes and dry mouth" so I'm hoping that rheumatologists and ENT's and maybe even neurologists that treat AI disease will eventually be brought into the Foundation and Nicox's education campaign.

Now, back to the tests. Being an inquisitive Sjoggie, I couldn't help myself and wanted more information about the exact tests that would be in the panel.  I found this article in Optomotry Times with lots of interesting details.  

The test...combines three proprietary biomarkers (salivary gland protein-1 [SP-1], carbonic anhydrase-6 [CA-6], and parotid secretory protein [PSP]) with traditional markers antinuclear antibodies [ANA], Ro, La, and Rf [rheumatoid factor]).

What's so important about these markers is that they can often be found earlier in the disease process than the traditional Sjogren's antibodies.  

Traditional tests for the disease use ANA, Ro, La, and Rf antibodies, which exhibit sensitivity limitations or are associated with later-stage Sjögren’s syndrome....The newer antibodies were found in 45% of patients meeting the criteria for Sjögren’s syndrome, but lacking antibodies for Ro and La. In patients diagnosed with xerostomia for less than 2 years, 76% had antibodies to SP-1 or CA-6, while only 31% had antibodies to Ro or La.

These new biomarkers have the potential to make a big difference for patients with clinical Sjogren's symptoms that do not initially test positive for the disease.  In my humble opinion, earlier diagnosis can lead to earlier treatment and a reduction in autoimmune complications.  So that's something to celebrate and big thanks and round of applause to those hard working University of Buffalo scientists Long Shen, Ph.D and Just L. Ambrus Jr., MD (pictured above) who made this scientific discovery possible!  

Mechanical Empathy...Better Than None

Picture Illustrative

There are many barriers to doctor and patient communication that have been widely chronicled here and elsewhere. 

One common complaint I hear from my friends with a range of chronic conditions is that if doctors could just "experience what I'm describing they would treat me differently."

It is a simple truth that in the vast majority of cases doctors cannot literally "feel" the pain or symptoms that their patients are describing. Of course most doctors have had the common cold or the flu, and perhaps even a broken bone or two, but when it comes to more uncommon conditions, like autoimmune disease, it is unlikely they have actually experienced the conditions.  And I and many other patients I know believe that makes it harder for them to relate to what we are experiencing. My personal belief is that this comprehension gap between patient and doctor is one of the reasons that many with autoimmune conditions go undiagnosed for so long and the severity of their conditions at times may be dismissed. 

As a result, I was interested to see this this article from Medpage about an actual suit to help doctors physically experience some of the limitations that RA patients do.  [Read and see an actual picture here]. Gloves from the suit were made available to try on at the American College of Rheumatology Conference this past week in San Diego. While the suit is designed to be specific to RA, many autoimmune diseases involve joint stiffness, inflammation, and limited mobility, so in my opinion it has broader relevance for most rheumatologists.  Even wearing it for just a half an hour can give someone an idea of what it means to live with mobility limitations when trying to navigate simple tasks that most take for granted.  While I would never wish an autoimmune disease upon anyone, I believe it's very helpful for those treating it to have a glimpse of what their patients go through and to see why from a clinical perspective finding the most effective treatment can be so critical for the quality of patients' lives.

These suits obviously can't impart the experience of physical pain, fatigue, and the myriad of other symptoms that many autoimmune patients have, but maybe sometime in the not so far off future, computer simulations can be combined with suits like these to make the autoimmune experience even closer to "real" life.  It might seem like out of Star Trek, but who knows what the future holds.  I hope that this development may be a part of a trend that leads to faster diagnosis, more timely treatments, and patients feeling better understood when they walk out of their rheumatologists office.

Tales from a Weekend Getaway

Last weekend, my husband and I decided that instead of taking one of our Sunday drives (yes, I think that term might be aging us more than 20 years) that we wanted to get out of town.  It's a beautiful time of year with the leaves changing from green into bright yellows, oranges, and reds. And while I try to forget--winter is just around the corner. 

Our plan to try to get away for the weekend initially didn't pan out as I had hoped.  I was too tired on Friday to leave after packing and making food for the weekend. It's kind of funny that getting ready for our short weekend away actually left me too tired to head off on our trip.  Alas, we had to adjust our plans and instead pack up and go the next morning.

Saturday morning also ended up being a bit of a challenge.  We left and came back to our apartment twice before actually hitting the road "for real". The first time I couldn't remember if I had locked the door.  The second time we were already twenty minutes away and I realized that I had forgotten all the food that I had made for the weekend.  I was just too out of it that morning.  Can you say brain-fog?

But after a rocky start, the weekend turned out quite well indeed. My husband drove and I slept in between stops so I would have energy for the activities ahead.  We began with apple picking at a beautiful orchard.  What looks like markings are actually clay to protect the apples from insects since they are organic and no pesticides were used. 

Our next stop was a small farm where they make cheese from their own cows, goats, and sheep.  I bought a really delicious cheddar cheese that I could keep in my cooler.  That's one benefit of traveling with food allergies--rarely do I go anywhere without a cooler and ice packs.

There were also lots of animals to see on the farm including this adorable baby calf timidly walking about.

The following day, we still had time for a couple activities. We took a leisurely walk with majestic mountain and water views and plenty of benches for resting.  

Our final stop was a town with a cider festival and to our surprise, it had an extensive display of classic cars all along Main Street.  There were even cars over 90 years old from the 1920s.  Pretty Cool!! 

I'd love to take a ride in this one

Then it was time to return home. After a bumpy start, the weekend turned out to be tons of fun.  My husband and I dealt with the accommodations and last minute adjustments that come with traveling with autoimmune disease and food allergies.  Sometimes I think we might actually be getting the hang of this...well sort of...or at least until the next major bump in the road. 

Changes in Medicine: Not a Piece of Cake

Image Source

Medicines are a daily fact of life for me, and I know in that I'm not alone.  I'm always looking for a way to reduce the drugs that I do take when possible, since virtually all have some level of side effect or interaction with another of my medications.   However, I have learned the hard way that getting off a medicine can be as difficult as getting used to taking a new one to begin with.  I thought I would share my recent story and a few tips that I've learned to deal with any major medicine adjustment.

The backstory here: Recently, my neurologist and I decided it was time to decrease one of my medications.  This was a good thing. I take the medication to help the neurological symptoms that I have from Sjogren's.  It's an anti-seizure medication called Trileptal and helps control the pain and numbness that I have specifically in my trigeminal nerve.  It's not something that prevents my out of whack immune system from attacking itself, so if I can tolerate a lower dose I'm not putting myself at risk of a flare.

As with all medications, there were side effects especially when I first started taking the Trileptal. I felt foggy like I was sleep walking half the time. I eventually "adjusted," but my brain still only worked at a slower speed.  I felt a bit like the scarecrow from the Wizard of Oz wishing that "I only had a brain".  Well, that's not exactly true, but it did feel like I could feel the wheels creaking as the they turned in my head when I had to think hard about something. When autoimmune brain fog hit, the combination was particularly frustrating.   Still, the Trileptal was the best of the many seizure medications that I tried (and there were many) and feeling slow was the least of my problems at the time when I was having such severe, disabling neurological pain.

So fast forward over three years to this summer and it was finally time to try to decrease my dosage.  The medicine is in a tricky class of drugs since one of the risks with going down on anti-seizure medicines, even if you don't have a history of seizures, is that you can actually have one.

My doctor gave me the basic guidelines for how to go down; I thought I'd follow what he said and would hopefully be done with it in a few weeks. Suffice it to say, it didn't end up exactly like that. When I tried to half my dose as my neurologist suggested, I found myself with bad headaches everyday and unable to sleep.  What immediately became clear is that I needed to go down on this medication more gradually than the "average" person.  There was no risk to going down too slowly just to going down too fast.  If I haven't mentioned it before, I tend to be sensitive to medication generally and on many occasions find myself with the side effects that less than 10 percent of the population do. Lucky me!

At that point, I brought my pharmacist and internist into the conversation as well.  The pharmacist helped me figure out the lowest possible dose of the medication available and let me know that the pills were scored so they could be further broken down in smaller increments. Instead of going down by 300 mg or 150 mg at a time, it was actually feasible to go down by 75 mg at a time.  I have now been able to lower my dose by 75 percent and instead of it being a six week process as initially planned, it took me three months.  This is certainly an example where medicine is both art and science, and each patient might need a slightly different approach.  I was more concerned with having the least side effects possible than being off the medication as quickly as possible.  Here's a few of the quick lessons I learned through this process that will hopefully be helpful in the future.  

1) Discuss an overall strategy with your doctor.  Find out about withdrawal side effects with your doctor and, if there are any, which warrant a call to the office or a follow-up visit.  Some side effects of changing your medication might be unavoidable so make sure to ask if there is anything you can do to better manage them and know what to watch for.

2) Keep a daily log of your medication dosage and any side effects you might notice.  This can be especially useful when following up with your physician.

3) Consult your pharmacist.  Not surprisingly, pharmacists sometimes know more about the metabolism, pharmacology, and timing of medications than physicians.  (To me they seem to be underutilized resource in American healthcare.) My pharmacist has been an invaluable resource about drug interactions in the past.  Luckily, my pharmacist and neurologist had the same general recommendation for the maximum amount that I could lower my dose each week.

4) Keep your primary care doctor or internist involved in the conversation.  This is important even if you are working with a specialist.  Your primary care provider often sees you more and can help coordinate care and deal with any important issues or emergencies that might come up.

5) Do your own research about possible dosing of your medication. This can be especially useful if your doctor has not given you dosing options or you are struggling with side effects. Websites such as drugs.com can be helpful for this kind of information.

6) Don't be afraid to be your own advocate and speak up, call, or email your physician.  As a patient with chronic illness, I sometimes feel like a bother when I contact my doctors office.  But if your physician makes you feel like one, you probably might consider getting a new physician.  

7) Recognize that guidelines for medication dosing are simply that.  Some people are more sensitive to medications than others.  Because not everyone metabolizes drugs the same way, partnering with your doctor to develop an individualized approach to medication dosing can be important.

What have your experiences been with changing medications?  Please share your stories or add any tips to the list. 

Achieving My Goals...On the Football Field

Players Right  After the Snap

I have found that adaptability is a good trait to develop (if you aren't already blessed with it) when you have autoimmune disease.  I realize it's news to few of you but, for most of us, having a chronic illness means that you have much less control over your life.  How you feel varies on a day to day basis and making plans in advance can be futile.  

I have had to work on becoming adaptable.  It's not in my nature.  I like to set a goal, apply laser focus, and accomplish it within a specific timeframe.  If only life were still so simple now. Becoming adaptable has meant finding new interests or enjoying my previous hobbies in different ways.  I used to play sports, exercise, go to the gym.  These days exercising no longer means competitive sports or going for a run and pushing myself to the limit.  I'm lucky to exercise at all.

One channel I have found as a way to replace my enjoyment of participating in competitive sports has been to become an avid sports fan.  I used to enjoy the experience of attending sports games, but I didn't watch many games on TV.  In my new "autoimmune life," I decided that I would start watching football and "learn" the game.  I found that I actually grew to love watching and, as an added attraction, it was a great way for me to bond with my husband--a major football fan. 

To my surprise, I came to realize that football is a really complicated and intricate game.  It is one thing to get the basic gist of what's going on in the game and another to have a good grasp on the multitude of offensive and defensive plays. (I still have a long way to go.)  Understanding football became a project, one that I could do while lying on the couch. The excitement of the games often made me forget that I wasn't feeling well.

As my enjoyment of the game continued to grow over the last few years, I made attending a  NFL game in person a goal.  I wanted to watch my favorite team, the New York Giants. The catch was that I needed to be well enough to go to game.  

The last two months I've had some improvement in my autoimmune symptoms and this fall seemed like it could be my chance.  My husband and I got tickets to a game, keeping our fingers crossed that I would actually be able to make it. 

For a change, everything actually worked out.  The weather was perfect for me -- in the low 70s and cloudy, so I wasn't concerned about the sun causing a flare.  While I was disappointed that the Giants played dismally, there was excitement to just being there with 80,000 other people cheering and rooting.  I can't remember the last time that I've had that kind of experience.  A year ago, I couldn't have imagined being well enough to make the trip to the stadium, having the energy to sit through four hours of football, and contend with large crowds and lines.   

This experience certainly reminded me that while it's important to accept having a chronic illness and its limitations, it is just as important to celebrate those moments when I can tell autoimmune disease to take a back seat.  Now, hopefully, the Giants will turn their season around so I have something to look forward to watching this fall on Sunday afternoons!

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* 

My Summer Discovery: The Lemon Cucumber

I find one of the best things about summer at least in the Northeast is the availability and wide assortment of locally grown fruits and vegetables.  This season I've recently discovered a new favorite at the farmer's market, the lemon cucumber.  It actually tastes nothing like a lemon, but it does resemble one in size and color, as you can see below.   They do taste like cucumbers, but have a thinner skin than other varieties.  This means no peeling, which also means less work to do with my hands, which at times are painful from autoimmune disease.

The lemon cucumber also has a high water content making them quite refreshing, especially on hot summer days.  And because of their wider shape than other cucumbers, they serve a dual purpose beyond just salads.  I have been using them to make sandwiches--not as a vegetable inside the bread, but as a substitute for bread. Being allergic to corn and sensitive to gluten, makes it hard for me to find a bread that is actually allergy friendly. While I have tried, my bread making attempts have not turned out well so far.   The  lemon cucumber has given me another choice.  I've found that they go particularly well with turkey, hummus, or even smoked fish.  All healthy food options for those with autoimmune or inflammatory diseases.

As a person with multiple food allergies, it's always a nice treat to add something new to my diet. Have you made a new fruit or vegetable discovery this summer?

Update: Vitamin D Yo-Yo

A little over a month ago I wrote about the drop in my Vitamin D levels and wanted to update my wonderful readers on recent developments.  The basic story is that my doctor had suggested that I try reducing my D dose from 50,000 IU a week prescription to the daily recommended dose. This ended up being a mistake. 

When I reminded my doctor to recheck my levels, they were low.  (Yes, I had to remind my doctor to check.)  As a result, I had to go right back on to the 50,000 weekly dose.  It was a game of Vitamin D Yo-Yo.

The critical question is whether I'm feeling any different now that I have been on the higher dose for about six weeks?  The answer, I am happy to report, is YES.  I'm not sure I realized how badly I had been feeling over the last few months, particularly how severe my fatigue had been.  From comments on my blog and Facebook, I know that others with autoimmune disease have had this experience too.

Even though it seems odd from something so simple, I clearly have more energy and stamina.  I've actually surprised myself in being able to partake in a few activities that were a bit more than I thought that I could do.  I went hiking.  Granted it was a short hike, listed as easy and perfect for children, but that's just about the right speed for me.  There was still the going down and then climbing up from the waterfall, which were a challenge.  Yes, did I mention that I got to see a beautiful waterfall (pictured below).  That was a bit of magic for me.

Since re-upping Vitamin D, some of my autoimmune symptoms seem to be slightly more tame as well.  The new neuropathy that had developed in my feet a few months ago is less of a problem as is my joint pain and swelling.   While I realize some of this could be chance and that I am just having a lull in disease activity, the fact that I am able to spend less time in bed and more time with family and friends is enough evidence for me that keeping my Vitamin D levels within normal range is important for how I feel.  It would be hard for me to believe that the timing is purely coincidental and taking a prescription Vitamin is much easier to swallow than some of my other medications.

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?

Image Source

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.

Study Raises Questions about Sjogren's and Plaquenil

Image Source

For many patients with Sjogren's, Plaquenil (hydroxychloroquine) has long been the go to drug that their doctors prescribe.  It is often the first line of attack before other more aggressive therapies are added such as methotrexate or rituximab that have bigger impacts on the immune system.

The other day one of my favorite bloggers, Julia from Reasonably Well, wrote about how she's been feeling since discontinuing her Plaquenil. 

I can tell that my meds have changed. I had almost (but not quite) forgotten what these aches and pains feel like, but they're back…I am re-acquainting myself with those symptoms that it tames: the overall flu-like and feverish feeling -- aka malaise -- and joint pain." (Click here to read more).

I had a similar experience when I stopped taking plaquenil.  It was one of those situations where I didn't realize the medication was having such an impact until I stopped it.  My joint and muscle pain went up and my energy levels went down.  Did the drug eradicate my fatigue and pain?  No, but it did alleviate some of the symptoms and improve my quality of life.  I have been on enough drugs to know when one helps.

So I was very interested when I saw on Twitter this study presented at both the American College of Rheumatology (ACR) and the European League Against Rheumatism's (EULAR) annual meetings:  Inefficacy of Hydroxychloroquine in Primary Sjogren's Syndrome: Results of the Joquer Randomized Placebo-Controlled Trial in Primary Sjogren's Syndrome.  Yes, that's a mouthful, but for those of us with Sjogren's and on plaquenil, it's a subject that's pretty relevant.

I haven't yet been able to find a published article with the study findings, but I was able to access the abstract.  The key findings cited:  At six months, 19.2% of patients receiving placebo and 19.6% of patients treated with HQ had a favorable response….No significant difference was observed in the evolution of systemic disease activity, dryness symptoms and quality of life. (Click here and go to L9 to read the abstract).

To summarize, the study found that at six months hydroxychlorquine (plaquenil) had no impact on a range of Sjogren's symptoms nor on disease progression.  While previous studies of the drug's effectiveness have been mixed, this study is considered important because it was placebo controlled, done with a larger population (still only 120 patients), and occurred over a 6 month period.  

So what does this mean for those of us who are having some success with plaquenil?  I'm really not sure. To start with, until the results are fully published it is hard to know what the complete findings were. For instance, I have since found other references (like this from the Journal of Musculosketal Medicine) which indicate that the complete results are less clear than the abstract--that patients who took the drug for one year did have significant improvements. I'm assuming full publication will help clarify some of these points. 

I am always very excited to hear about new Sjogren's studies, but given the limited information available I was a bit concerned to see some of the early reaction online. I have already seen a few doctors--on Twitter and in podcasts -- making reference to the same findings I have seen, with some indicating it may cause them to revise their treatments for Sjoggies. 

This gave me pause. I'm just one patient, but I would urge caution to anyone currently treating patients with the drug. I have first hand knowledge of the benefits of the drug and know from several other Sjogren's patients have seen them as well; in short the drug has helped at least some of us. Since there are so few treatments available, it seems important to have plaquenil as an option for others seeking relief for their symptoms until other treatments are available.  Taking one arrow out of an already thin quiver doesn't seem like progress.

While watching my doctors at work, I've observed that part of treating patients with autoimmune disease involves trial and error. I don't view this as an argument against evidence based medicine but rather an indication of the importance of clinical judgement when treating patients with the same disease diagnosis but divergent symptoms and disease trajectory. I don't see how 60 patients (number of study patients given plaquenil) can encompass all the variant manifestations of the disease. 

I hope doctors and scientists use this research as a motivation to do further studies on Sjogren's, as opposed to considering the issue of plaquenil settled. We just know so little about this whole disease that I hope each piece of knowledge we gain is seen for what it is--a little bit of a puzzle revealed, but one that will take years and many studies to become clear.  Hopefully, one day in the not to distance future, newer, more effective treatments will make this whole thread irrelevant. 

Have you taken plaquenil and what was your experience?  

The Vitamin D Drops

Image Source

It seems almost every week I read a new article about the importance of vitamin D in protecting against autoimmune disease and preventing its progression for those who have it.  A straight forward discussion of some these findings can be found here.

I've heard from many of my fellow bloggers and readers that when they were diagnosed with autoimmune disease, their vitamin D levels were low.  The same was true for me.   One of my doctors suggested a couple months ago that I try to move from taking 50,000 IU of D once a week to supplementation of 2,000 IU daily.  A huge difference of 36,000 IU weekly.  I figured this would be an experiment--a vitamin D challenge of sorts to see if my levels could stay within normal range.

Last week's doctor's appointment was the moment of truth.  And it turns out that my D levels have plummeted  since changing my dosage.  As a result, I'm back up to 50,000 IU weekly, at least for the next 12 weeks.

What is particularly interesting is that over the last month, I noticed my energy levels had dropped and my brain fog was more apparent.  I was definitely spending more time resting trying to fight that intense autoimmune fatigue.  I'm wondering if there's a relationship here -- did lower vitamin D lead to more Sjogren's symptoms for me?  It also left me thinking whether there is something about autoimmune disease that makes it difficult to metabolize or absorb Vitamin D, leading to the need for higher supplementation. But this is of course a question for the research physicians and scientists out there.

It is true that I don't spend much time in the sun and when I do, I always wear sunblock to prevent evil flares.  However, I was still taking more than twice the Institute of Medicine's current daily recommended dosage as shown below in this chart from the National Institutes of Health Vitamin D fact sheet. 

Table 2: Recommended Dietary Allowances (RDAs) for Vitamin D 

Age	Male	Female	Pregnancy	Lactation
0–12 months*	400 IU (10 mcg)	400 IU (10 mcg)
1–13 years	600 IU (15 mcg)	600 IU (15 mcg)
14–18 years	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg
19–50 years	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)	600 IU (15 mcg)
51–70 years	600 IU (15 mcg)	600 IU (15 mcg)
>70 years	800 IU (20 mcg)	800 IU (20 mcg)

I now know that regular supplementation even with a conscious effort to eat foods high in D like fatty fish just doesn't cut it for me.  I'll have to see what my doctor suggests in three months to try and keep these levels normal. 

Have you noticed a relationship between your autoimmune symptoms and vitamin D levels?