Tuesday, November 18, 2014

It's A Girl!

I have some big news that I’ve been meaning to share; my husband and I have a little girl!  She came last month and earlier than expected, but thankfully she’s perfectly healthy and doing wonderfully well.  We couldn’t be happier and more excited.  It’s truly a miracle given my health issues and a very high risk, complicated pregnancy that we’ve been blessed with this little baby and are now a family!

Life has a whole new rhythm.  Feedings, diaper changes, and tons of hugs, kisses, and snuggles are what make up my days and nights. We’ve been lucky to have lots of support from family, but this is a whole new kind of work.   Like many first time moms, I’ve got lots to learn and everything is new to me.  And of course, I’ve got the added challenge of trying to figure out how to take care of myself and keep my health stable so I can take care of her.   When do I fit in rest, putting in eye drops, eye soaks, keeping my medicine organized, doctors appointments? I know this will be an ongoing process, but for now I’m just basking in being a new mommy and doing the best I can with our little one.

I'll try to keep posting when I can, like right now--when she’s peacefully napping, but I just had to share our joy with all of my wonderful readers!

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!

Friday, June 13, 2014

Wise Readers: How You Cope With Patient Burnout?

Thanks to the fabulous and wonderful blogger Julia from Reasonably Well for writing about last week's piece on "Patient Burnout" and asking readers for how they cope with not just having a chronic illness, but the reality of being a chronic patient.

She got some great responses ranging from the importance of humor and laughter, being kind to yourself, and making sure that your medical care doesn't become an experiment for your physicians.  That last one is an important reminder that being a patient means making decisions with your provider,  not just following his/her medical advice blindly.  We also can't forget as another reader, exemplified that venting can be a powerful force and letting our frustration out can sometimes help us move on to the next thing.

I've shared all the responses below since I personally found them extremely helpful and insightful.  Thanks to those who commented for their wisdom.

 Sue said...
I have found that having a sense of humour is very important. Life can beat you down at times but being able to laugh helps things tremendously.

 Heda said...
Hard to even think about this one. One day at a time I guess is one option. Definitely accepting the illness is vitally important. Keeping a sense of perspective. Guarding against the temptation to make things worse than they are. Finding time for friends and family. Being kind to yourself. Respecting yourself especially when it comes to being able to say no to things that you really might want to do but know you can't. Not letting specialists use you as an experiment for their latest hobby horse. No, absolutely no, unnecessary tests. Way too much emphasis on discounting possible obscure diseases when sjogren's is the most obvious cause of a symptom. Is that enough? And I thought I had nothing mush to say about this topic until I started. LOL.

 Kelly said...
Up until recently, I relied on the ostrich maneuver: head in the sand, ignore symptoms or treat with OTC/home remedies and lifestyle changes, stay away from doctors as much as possible and repeat the mantra, "not that sick, not that sick, not that sick..."

But now I am waiting for a promised referral to the nearest Sjogren's Clinic to get a final word on whether or not it's Sjorgren's and if so, do we begin treatment of some sort. If not, then what is it??? The magic words to get the ostrich's head out of the sand were, "Interstitial Cystitis."

Better lay in a supply of yarn as knitting in doctor's offices helps me tremendously. Even when I can't focus enough to read, I can knit and that feels productive. Instead of a wasted day, I have a new sock for me or cotton washcloth for my grandson's pile of face-cleaning cloths.

 Unknown said...
I started with temporal lobe epilepsy in 9th grade, and the onset of endometriosis before that. I had to deal with the epilepsy, obviously, but the endometriosis- I took remember the words my mother's gyno told her: when it hurts bad enough, you will return! (sounds like Arnold in a movie, hmm?) Well, seizures require ongoing maintenance, infertility and the pain from the endo is what finally forced me to get treatment.

Now, with psoriatic arthritis, breathing problems, bladder problems, heart problems, tingling problems, ibs problems from the as yet undiagnosed something else....

what is most frustrating to me is not always knowing which doctor to go see...the internist or the rheumatologist; the dermatologist or the rheumatologist...etc.

Also, the person (people) who I feel is (are) my biggest supporter (my aunt, and my mother), are constantly coming up with off the wall wacky suggestions or bringing up the worst case scenario of someone they knew who had the same disease, implying that my psorisis (which is mild) is going to land me in the hospital also, instead of just being supportive. Or, that my one foot that the swelling refuses to go down in, is going to be like her friends (who has a bone fragment that now requires an ankle replacement). It's not the same thing!! I keep wanting to shout.

aaah. thank you! for letting me say that. That's my patient burnout, just the frustration of not always knowing who to turn to for help. I often go to my primary care, simply because I'm not sure who to see.

Thursday, June 5, 2014

Coping with Patient Burnout

A Second Home for Many Chronically Ill Patients
There is a new kind of burnout that I fear the medical profession has failed to realize.  What about patient burnout?  We're always hearing concern about physician fatigue and quality of life--and that the medical system, its administrative burdens, and payment system has created an untenable situation for physicians. But what about how this impacts the people the health profession is intended to help and serve? Patients, especially those like many readers, who require constant care.

I'm almost hesitant to count the number of doctor appointments that I've had in the last month.  But it's somewhere around 15.  That means there were only 5 weekdays that I didn't find myself sitting in a waiting room often for more than a half hour, on an examining table,  and being poked or prodded. It's meant preparing for these appointments, commuting to them, and dealing with the stress of making medical decisions with my physician.  While I'm generally happy with the group of physicians that I've cultivated over the last few years, that doesn't mean that these appointments aren't somewhat stressful.  Questions of health are never to be taken lightly.  

And my job as patient extraordinaire does not end when I get home. Just last week, for example, my eye doctor prescribed new medications for a persistent infection I've been fighting for the last two months.  However, another physician had concerns about that choice.  That meant I needed to to get both of them to actually talk on the phone and figure this one out.  I wrote emails and called both offices to help make it happen.  It eventually did, but it took work and me being a pushy patient.  In the end, they both decided we could stick with the new regimen.  This process did take up a considerable amount of time and energy, and it was unsettling to start a new medication and then be told by another physician it should be immediately discontinued.  All in all, it was certainly stressful.

Beyond this, doctors and their staffs are not the only ones that have to deal with insurance companies and billing.  Patients do as well--and we often have to catch mistakes that are made my both.  Now, I don't want this post to turn into a list of rants and complaints.  Because the important question is how to cope with all the work we have to do as patients without feeling exasperated and overwhelmed.  I, for sure, don't have this down to a science by any means.  But when I do feel overwhelmed by the medical system I have some techniques that can help me feel me more grounded and that my only identity isn't that of a patient. 

My Survival Tips for Dealing with Patient Overload

1) Morning Meditation.  Meditation has many benefits for people with chronic illness and those without.  For me, just taking 10 minutes to breath clears my head and makes the day ahead feel less overwhelming.  When I meditate, I generally feel more focused and prepared when I walk into a doctors appointment and better able to cope with what lays ahead. 

2) Lists.  Lists help me with everything, especially keeping my healthcare organized.  If I write down everything I need to do in the morning to deal with my healthcare and pick the 2 or 3 that REALLY need to get done, it helps me prioritize and make my healthcare tasks seem finite as opposed to infinite.

3) Do one thing for you, but not related to your healthcare everyday.  Preferably something that you enjoy.  Even if it's just a phone call with a friend or family member, going for a walk outside for 15 minutes, or reading for half hour.  While it might sound trite, this really helps me stay connected to the non-patient part of my life.

4) Scheduling Appointments.  Figure out what kind of appointment schedule works for you and your emotional and physical well being.  Would you rather have a number of appointments crammed into one week or do you do better when they are spaced out?  If my health allows, I try to have no more than two doctors appointments in a week and like to make sure I have at least one "off" week every month where my routine can feel more regular. It's taken me a bit of experimentation to figure out that this adds more balance to my life. 

5) Accept that this is a marathon not a race.  Similar to accepting that chronic illness is a long term battle, so are all the parts of dealing with the healthcare system that come with it. I've learned that even if I try to take care of everything related to my health as perfectly as possible, new challenges will emerge.  I won't get a gold star by pushing and exhausting myself to be the perfect and most efficient patient.  Conserving physical and mental energy for the long haul is a priority.

6) Take a Patient Vacation when you can.  Recognize and celebrate the periods when you're health is more stable.  This doesn't mean neglect the important aspects of daily care like medication regimens. But we can celebrate these "better" times by allowing yourself to try something new or get back to a hobby or a gentle exercise routine that your health might have been a barrier to.

How do you deal with patient overload and frustration?   Please share your strategies. I would love to post them in an upcoming blog.

Wednesday, April 30, 2014

Sjögren's Awareness: The Sjö Test in Action

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Back in November, some of you may remember that I wrote about a new diagnostic test for Sjögren's  called Sjö. Read more here.  What's unique about the test is that it uses newly discovered diagnostic markers which can detect Sjögren's earlier than the traditional antibody tests (SSA and SSB).  Well due to my recent spate of eye problems, I've been spending lots of time getting to know my eye doctor and his fellow.  I'm sure most of you are not surprised that I often use my doctors appointments not only as an opportunity to deal with my own health issues, but to also to bring up new Sjögren's research.

During one of these conversations, I mentioned the Sjö test.  Well it turns out that my doctor's office is one of the earlier practices using it and is having significant success with it. They have diagnosed a number of patients who in their estimation would have needed a lip biopsy or it would have taken another couple years for them to develop Sjögren's antibodies.

Some were having what were considered "vague symptoms" of dryness, joint pain, fatigue, and the doctor thought to order it.  The results came back positive in a number of cases.  This even happened to one of the technicians who works at the ophthalmology practice--and she is now being treated for Sjögren's.  Early diagnosis is extremely important as many studies have indicated to help reduce further complications of the disease.

Often times as an autoimmune disease patient, medical research and development seem slow.  It can takes years, if it ever does at all, for the implications of a new discovery to actually make it to patients as a diagnostic tool or treatment.  But this development is real progress in action.  The test was just released in November and it's already helping patients.  A perfect reason to feel hopeful as we reach the close of Sjögren's Awareness Month.

Tuesday, April 8, 2014

Missing Out and Chronic Illness

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Not being able to participate in aspects of life is a tough reality for many of us with autoimmune disease.  It is something that I'm definitely grappling with at the moment. There is a constant balance of trying to protect my health and at the same time manage other priorities.  I often struggle with the question: What is it actually possible to do without health consequences?

This upcoming weekend I am supposed to attend a family member's wedding across the country from where I live.  I have been pretty determined to attend and believed (or perhaps hoped) my health might actually be in a place where I could make the six hour flight across the country.  My husband and I still waited as long as we could to purchase the tickets.  We told the bride and groom that we couldn't guarantee our attendance, to hold off submitting our names for their count as long as possible, since there was always a chance that we might have to cancel at the last minute.

Everyone in the family has been rooting for us to come.  As background, I haven't been able to make a trip like that in at least five years and have missed almost all of our families' and friends' events that have required out of town travel over that time.  This one event holds real significance for me.  All my first cousins and their children will be in attendance and the last remaining relatives in the their 80s and 90s.

Things looked good last weekend.  I was confident that I would make it.  I was looking forward to the adventure...as well as the warmer weather.  However, within a mere forty-eight hours from announcing my intention to go to the wedding, things began to change.  My eye and the area surrounding it became red and started feeling painful.  My face began hurting as well.  My eye doctor fit me in immediately for an appointment yesterday, and just my luck, I have an eye infection.  I know from experience as Sjögren's patient who has had both a corneal ulcer and uveitis, that eyes are serious business.  Getting this infection under control and making sure it did not spread any further had to become my number one priority.  I also knew, as my doctor reminded me, that making a long distance trip with my eye compromised and my other health issues just didn't' make sense.  

While I know intellectually this is the right decision, I am definitely taking this turn of events particularly hard. I have handled most of the disappointments surrounding how my life has changed without getting too upset.  I have become very good at being thankful for the little things that I can do, as opposed to focusing on what I cannot.  I was thankful once I began being treated to have a day without severe neurological pain, to be able to just read an article in the newspaper, and have the energy to walk around the block or even go to the grocery story.  But now I am starting to expect more--and I don't want that to change.  I refuse to give-up on the idea that I will be able to work and participate in life with family and friends when there is so much that I want to accomplish.  I know that I will keep forging ahead despite these many twists, turns, and unexpected health challenges.

I have been coping by calling everyone in the family who will be there to catch up--letting them all know I will miss seeing them and how much I truly want to be there with them to celebrate.  Everyone has promised to send me real-time pictures of the festivities and I'm expecting play-by-play descriptions of all the events.  I trying to gently remind myself that the fact that I could consider even attending was progress.  There will be more happy occasions in the future and I will figure out a way to be at them.  

But I also think it is ok to mourn and just be sad that I am missing out on a momentous family occasion--and to feel keenly that it is isn't fair that having chronic illness has meant constant compromise, lifestyle modification, and putting many things on hold...while my friends and family are excelling in their careers and running marathons for fun.  I am not sure anyone can perfectly accept the limitations of these tough autoimmune diseases--and I think that there will unfortunately be other times when throwing up my hands and saying "THIS REALLY STINKS!!" might actually be the healthy thing to do.

Wednesday, February 19, 2014

The Challenge of Gluten and Corn Free Pasta

One the foods that I miss most from my pre-food allergy pre-gluten free life is pasta.   Especially during the cold winter months, I find myself wanting just a big comforting bowl of that gluten filled deliciousness. I have not had gluten at least knowingly since November of 2011.  That was when I had my last bowl of pasta.  It was delicious…and I was sick all night.

My craving for pasta didn’t disappear, but I knew I would have to find a different way to eat it.  I know there are many gluten free pastas available, but for me it’s not that simple; I also run into trouble with my corn allergy.  As far as I can tell corn seems to be a most common ingredient in GF foods.

Many people recommend rice pasta to me.  I do fine reaction-wise with plain rice ones, like Tinkayada, but they come out a little too mushy for me.  They don't compare to "real" pasta. I use them as noodles in soups, however I find myself disappointed when I try to build a meal around them. Eating it makes me miss my gluten eating days more.

It was hard to contain my excitement when I recently discovered my true GF, CF pasta substitute.  I saw a product at the market that I had never tried--Andean Dream Quinoa Pasta.  It really is a bit of a dream.  When I tried it, I knew this was a whole new level of GF pasta.  Its ingredients are simple quinoa and rice and no corn.  (They actually advertise that their products are both gluten and corn free.) The main difference between the Andean Dream and the rice pastas is that the texture is much more similar to how I remember regular pasta.  It actually tastes like al-dente pasta and it doesn't become gooey a few minutes after cooking.   The texture is just right and the taste is subtle so it doesn't over power whatever other ingredients you decide to add.  I've been making it with butter or olive oil and sautéed vegetables.

The true test is that this is the only GF pasta that my husband will eat.  Oh and I forgot to mention, it can be used for a mean macaroni and cheese.  

So I can now officially report that my two-year pasta problem has ended. For those of you with Celiac Disease or Gluten Sensitivity, what's your favorite GF pasta?

**Please note: I have no relationship with any companies whose products are mentioned in this or any other post.**

Thursday, February 6, 2014

Reasonably Well: Sjögren's and Cognitive Function

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Everyone should read Julia from Reasonably Well’s excellent post entitled Tufts Study: Despite Burden Sjögren’s Syndrome May Not Impede Function that discussed new research on Sjögren’s Syndrome and cognitive difficulties.   You can read the whole extremely informative post here.  I’m going to comment on some of my favorite parts below and add some of my own reactions.

The Tufts Study concludes that Sjogren’s patients despite their perception “appear to function at a level comparable to their healthier peers.”  This is obviously good news, but Julia addressed some of the potential flaws with the study and raises research questions for the future.

Starting with the issue of fatigue, Julia writes:

I noticed that the assessment of fatigue…was not located in the physical section but rather in the Mental/Emotional locale.  There were no physician evaluations of joint pain, pure neurological problems (as opposed to neuropsychiatric), pulmonary issues, renal problems….to name just a few well-documented extra glandular manifestations of Sjögren’s.

She goes on to say (I love this part).

Since fatigue is one of my most disabling symptoms of Sjs and I'm a bit touchy about labeling fatigue as an all in your head symptom, I found it interesting that elsewhere in the discussion section of this study, fatigue is included under the description of "neuropsychiatric problems".

Well, I must say I’m touchy about this too.  And isn’t their bias in the research if fatigue is classified as neuropsychiatric from the beginning?

And I have had a similar experience to Julia where as she writes that for her tired=stupid.  What a perfect equation. I completely relate.  When I’m having complete autoimmune exhaustion, I also have what I would call brain-fog. 

This idea also got me thinking.  Do studies need to include both disease activity and cognitive function? Would it be worth exploring whether “flares” have both cognitive and physical impacts?  And Julia also brings up another super super important point about study design:

This was not a longitudinal study. Study authors would have no data to support their discussion of length of disease related issues.

In another small controlled study on the subject conducted by doctors and psychologists, including the Director of the Penn Sjögren’s Center, Dr. Frederick Vivino, found significantly lower IQ scores and lower verbal memory scores for the Sjögren’s group (click here for the study). No statistically significant differences were found on concentration and processing speed, visual memory, or executive function.  Interestingly Tufts and the Penn Studies used different measures of cognitive function.  While the Penn study also clearly had its limitations with only 17 participants and it did not occur over a period of time, the authors tend to stay away from broad generalizations, and suggest more research including “correlating neuropsychological findings with neuroimaging.”

On the other hand, the abstract of the Study out of Tufts University concludes that "Sjögren's patients perceive deteriorated physical function over time, but they achieve a level of functioning comparable to controls despite the burden of their illness" (click here for the abstract). In my opinion, that language is a bit misleading. Making physical conclusions about a cognitive study makes little sense. 

Perhaps, if a rheumatologist who regularly evaluates patients and the glandular and extraglandular manifestations Sjögren's had been involved in the study, he/she would have taken other issues into account.

While it is always good to see new research on Sjögren’s, it’s also important that the authors identify the scope and limits of their research. 

Thanks Julia for your excellent post and bringing it to the attention of all us Sjöggies.

What did you think of the Tufts Study?  If you could suggest new research on Sjögren's, what would you focus on?

Thursday, January 30, 2014

Trigeminal Neuralgia and Turtle Fur

From reading the tittle, you might be thinking what do the trigeminal nerves have to do with turtle fur and do turtles even have fur?  But I promise this post is actually about something that I find extremely helpful during these frigid windy months called Turtle Fur.

As I've mentioned in the past, I have cranial nerve involvement as result of Sjögren's and unfortunately my trigeminal nerves have been affected.  Check out my previous post here and the awesome Sjögren's blogger Julia from Reasonably Well has also discussed it here.  

The bottom line is that trigeminal neuralgia is an extremely, extremely painful condition and unfortunately wind or cold touching the face can be a major pain trigger for many who suffer from it. This presents a great challenge for those of us who live climates with frigid and windy winters. For me, this means that in order to go outside in the winter, I need to keep my face protected at all times.  Something like a scarf just doesn't do it because the trigeminal nerve runs down the side of the entire face and has three main branches that also cross the face.  Scarves and even pashminas also don't stay up completely and can easily fall down as I've learned the hard way.  Believe me, I've tried everything.

A couple years ago, I found a product called the Turtle Fur Neck Warmer (pictured below) that has been a saving grace.  It is made from fleece, soft and warm, and feels good on my face.  I find that some materials can also be aggravating to my trigeminal nerves.  The great thing about this product is that it can go up all the way to right below my eyes and actually stays there.  Most other products I tried in the past would usually fall down at some point leaving my face exposed. My other favorite thing about this neck warmer is that it has a double layers of fleece so it's very warm.  

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Now, turtle fur isn't the only part of my trigeminal nerve protection routine.  I also wear big sunglasses, which shield my dry eyes and the branch of the trigeminal nerve that crosses the eyelid and forehead.  To complete my going outside garb, I wear a hat with side flaps that is lined with a fleece material that covers my forehead completely and adds double protection for my ears, which also have been impacted by Sjögren's (There are plenty of variations of these).  I might not be recognizable when I go out in the winter, but at least I have found a way to go out and be in less pain. 

This faux fur looked particularly protective

Mine is a variation on this lined with fleece

How do you protect yourself in the winter to minimize your autoimmune symptoms?

***Please note I have no relationship with any of the companies mentioned in this or any other post***

Thursday, January 16, 2014

Beware: Sjöggie in the Kitchen

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So I'm starting to feel somewhat better as I mentioned in my last post.  I decided it was time to get back in the kitchen and do a little cooking.  One of my winter favorites is Turkey Soup.  I find it to be richer and tastier than chicken soup and the meat keeps its flavor even after simmering for over an hour.  

For me, however, even making soup can be an adventure. The story goes like this. I'm enjoying my new found post-flare freedom as I cook my delicious soup. I am stirring the soup.  Smelling the soup.  Pretending to be a real cook.  Then the timer goes off.  It is time to taste the very hot soup that has been cooking for close to an hour and a half. I take the ladle holding boiling soup and manage to pour it not in my mouth, but on my chin.  My mind must have been wandering at that critical moment. The soup was very, very hot.  Did I mention it was hot?  Lucky me, I now find myself with a burn. 

At first, I didn't think it was much of anything.   But my chin is quite red where the soup hit it.  No blistering at least, but I definitely have a burn there. I had planned this to be my well-deserved hiatus from doctoring.  Instead, I will be at the doctor bright and early tomorrow morning to make sure that I don't need to do anything to prevent it from scarring or getting infected.  

This is the danger of being both a Sjöggie and a klutz!  When my autoimmune symptoms seem to settle, I absentmindedly injure myself. Well, I guess at least this is a "normal"-person doctor visit.  

I don't want any of this to be taken as a knock on my favorite Turkey Soup. In case any of you want to try your own version, I've provided the super easy recipe below. As with all my recipes, it is adjusted for me significantly due to wide-ranging food allergies.  I'm sure others can add additional flavors, but I'm very limited...and I still think this tastes great. 

Please do beware in the kitchen, I don't want anyone else to injure themselves on account of this soup!

Winter Turkey Soup


2 Turkey Thighs (or other Turkey Parts of your choosing)
4-6 Peeled and Sliced Fresh Carrots, 
8 Small Potatoes 
Fresh or Dried Parsley
2 1/2 teaspoons Sea salt or Kosher Salt
6-8 cups of water


1) Place turkey thighs in soup pot.

2) Add any vegetables you desire and parsley on top of turkey. ***I'm limited in the ingredients that I can use due to food allergies.  But if I could I would also add garlic, onions, and celery.***

3) Pour six cups of water into pot or enough to cover vegetables and turkey.

4) Spice accordingly with salt and pepper.

5) Bring soup mixture to boil. It usually takes about 20 minutes.

6) Keep soup partially covered and simmer for 1 hour.

7) Stir occasionally and add an additional half cup of water if too much liquid has evaporated.

8) Once finished cooking, transfer turkey to bowl.  When adequately cooled, remove turkey meat from bone and add back to soup. 

9) Serve with your favorite noodles or rice. 

Tuesday, January 14, 2014

Is the Flare Finished?

Alright, I am slowly emerging from my flare.  Thankfully!  I've been out of touch here for too long. It has been a rough few weeks and as those of you know with autoimmune disease, flares and their duration are unpredictable. 

The first interesting thing about this flare is that it appears to have been initially triggered by the flu shot.  Yes, the flu shot.  Now, I know this might sound controversial, but bare with me, this is not my analysis but that of two of my physicians who specifically treat patients with autoimmune disease.

I got the flu shot and 48 hours later my autoimmune symptoms started acting up and then kept getting worse.  Within the next couple weeks, I knew I was in really trouble. I went from being in a position where I could largely manage my Sjögren's to being in excruciating neurological pain.  I had the good fortune of several relatively healthy months, so that I had almost forgot how severe and debilitating constant trigeminal nerve pain can be.  Well, that changed fast. Pain medication wouldn't even touch it.  My eyes became so dry and painful that I had to be put on steroid eye drops.  I stopped being able to read or use a computer all together and went back into survival mode.

Now, being the stubborn Gal that I am, I thought to myself at the time, I can manage this flare myself.  I won't contact my rheumatologist, there isn't much anyone can do for me.  But when the pain started to reach an 8 everyday and I couldn't leave my home, I changed my mind.  Well to be honest, my husband had to partially convince me that it was time to seek medical help.

I was hesitant to even mention the timing of the flu shot with my doctor. I expected my rheumatologist to think that I was nuts since I am so used to doctors touting the important benefits of the shot--particularly for someone who has so many health issues.  But I was surprised. He told me that vaccinations do have the potential to cause activation of autoimmune flares. He said this doesn't mean that you shouldn't get vaccines, or even avoid the flu shot, but there are risks.  (Note: This is in part why I have so much respect for my rheumatologist, he understands that there can be exceptions to the general medical wisdom.)

Then I talked to my eye doctor, who specializes in autoimmune disease. He also had a patient like me who went into a serious flare after getting the shot.  At this point, I was at least sure I was not the only patient who had this happen.  It was helpful to know, but also convinced me to write this post in case others have had a similar issues--however unusual it might be.

I want to be clear I'm not making any recommendation or generalization for other Sjöggies or autoimmune patients.  As I've written in the past, I do tend to experience what are often considered the "rare" or "unlikely" side effects from medications and procedures.  

I currently have my fingers double crossed that I'm on the other side of the flare.  I had to have a number of days of steroid infusions followed by a slow taper to get my overactive immune system under control.  As we all know, being on steroids have all sorts of unwanted side effects including lowering your overall immunity.  Not surprisingly, during this winter season where everyone seems to be sick, I came down with a super bad virus that included fever, cold, and stomach upset that left me flat on the couch for another week.  So here I am again, slowly rejoining the world after another autoimmune blip.  I'm hoping and praying that there aren't many of these interruptions in 2014!