The Steroid Roller Coaster

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If you have autoimmune disease, it’s likely you’ve had some experience with being on prescription corticosteroids steroids.  They can be quite effective to tamp down our overly zealous immune systems and get flares under control.  They are anti-inflammatory and are also used for other conditions like asthma, allergies, and joint inflammation.  It turns out at some point I’ve been on steroids for most of the above issues.  But while they often seem like a potential wonder drug--and at times they have been for me--they are not a medication to be taken lightly.

Let me start with the good news.   They work. When I’ve had bad flares, I mean flares where each second feels like an eternity of pain, getting infusions of high dose IV steroids usually gets things under control enough.  Nothing else has done that for me in those cases.

When I’ve gone to the emergency room with an anaphylactic reaction, steroids (combined with benedryl) gets the swelling of my throat under control.

For me, however, steroids are not just for emergencies. They are part of my monthly infusion routine to decease side effects and also prevent me from having an allergic reaction.  This is where the problems begin.

Because steroids change me.  I must admit it.  The first two days that I am on them, I usually don’t mind the increase in energy they tend to give me. I feel a bit like super woman. I have more energy, I can do more things with my daughter, carry more, walk more, it's great...at first.

But then I get what must be a milder version of what baseball players call roid rage.  I become quicker to frustrate and anger.  I still look like me (perhaps with a more swollen face, which is another side effect), but I certainly don’t feel like me.  Little things really bother me and my patience goes from what I would consider my usual fairly tolerant self to a short fuse.  I feel all around frustrated. I get mad at my husband and I'm often not sure why; basically because he’s simply the person who is with me the most.

I also feel less optimistic on steroids.  My mood drops and I feel down about having autoimmune disease and how it is impacted my life, career, and family enormously.  The glass goes from half full to half empty in a matter of two days.

Mood changes, mood swings, and depression are listed as side effects off steroids. Some of my doctors have told me my low doses shouldn't cause these problems, but they do for me. I have to be on this medication for approximately a week every month, so it's a regular cycle that I should be used to, but it catches me every time.  My infusions have helped bring me from being disabled by autoimmune disease to relatively functional again, but steroids are part of the bargain that comes along with it.

I don't really have a great solution for what to do, but I have compiled a list of things that are marginally helpful.

1)  Remind yourself that how you feel is not really reflective of who you are and this episode will pass.  Of course easier said than done.

2) Warn close family members that you might not be exactly yourself.  Apologize in advance for any ridiculous things you might say.

3) Ask those in your support network to remind you that how you feel is not realistic and temporary.

4) Create A mantra that you and your family can use. “It’s not me talking, it’s the steroids.”

5)  Engage in normal stress reduction techniques.  For me these might include walking, mediation, and making plans with others.

Most of the time, I feel like I am just trying to get clumsily through these tough periods.  I imagine many others with autoimmune disease confront this problem as well and I would love to hear your input on what works for you.

My Pregnancy and Sjogrens

I didn’t have a chance to write much about my pregnancy and I wish that I had.  At the time, it seemed like things couldn’t get any busier with my constant array of medical appointments, moving, and getting ready for baby.  What I’ve come to realize is that having a baby is even busier than having three to four doctors’ appointments per week and managing a chronic health condition, but that’s a whole other discussion.   Pregnancy and autoimmune diseases are an extremely important topic especially because the majority of people who suffer from them are women.

It used to be that many women with autoimmune diseases were told to forgo pregnancy.  This is no longer true for many of us, which is a welcome change. (I do realize that getting pregnant can be a difficulty for autoimmune disease patients, but I’m going to stick with my experience with the pregnancy part for now.) With careful pre-pregnancy planning and monitoring during pregnancy, it’s possible for things to go well and to be blessed with a healthy baby.  Now of course that doesn’t mean the pregnancies are easy and without risk, but a good outcome is no longer a rarity. In fact, a study from last year, the largest of it’s kind found that pregnancy is safer for lupus patients than originally thought with a 81 percent having what is medically called an “uncomplicated pregnancy”.  Click here.

For me, pregnancy was a bit of double-edged sword.  In order to make sure my baby was healthy, I had weekly fetal echo cardiograms throughout most of the 2nd and 3rd trimester.  These were critical to determine if the baby’s heart was developing correctly and did not develop “fetal heart block”.  Heart block can be a consequence of the SSA/SSB antibodies found in some Sjogren’s and Lupus patients.   I also saw my high-risk OB quite often in addition to my regular array of autoimmune appointments including rheumatology, rheumatology infusions, and ophthalmology to name a few.  To make things a little more tricky, my OB and pediatric cardiologist  (she monitored my baby’s heart) were at least an hour away so I would wiped out by the time I got back home.

The good news was that my Sjogren’s was much better while I was pregnant.  Yes, I felt the best I had in years.  My fatigue was less intense and I had more energy.  My neurological Sjogren’s symptoms were more in check and we were able to lessen the “pregnancy safe” medical treatments I needed.   Dare I say I felt pretty normal.  And while, many pregnancy women complain about brain fog for me it was also the opposite.  I felt mentally sharp again.   I “knew” this new state was probably temporary, but I secretly hoped it would last well past my baby being born.  I imagined going back to work part-time and excelling at both home, career, and motherhood and managing my health. (While material for another post, this was definitely too ambitious).

And I am not alone in having this experience.  Some autoimmune diseases are thought to improve during pregnancy.  My doctors who are Sjogren’s experts told me there was a chance that I would feel better based on their clinical experience.  Some describe pregnancy as a natural imuno-suppressive, which can be a good thing for those of us with over-active immune systems that go around attacking the wrong things.

This raises a number of big questions, which I am not nearly smart enough to answer.  What exactly happens during pregnancy that puts some autoimmune diseases into a less or more active state?  What role do hormones play in this process? And more importantly is it possible to replicate some of this without pregnancy?  I’m hoping that some scientists and doctors might already be tackling these questions.  If you're familiar with anyone doing work here please let me know.  I do wonder whether some of the mystery around pregnancy and autoimmune conditions may be part of the the key to better treatments in the future. 

I would love to hear from other autoimmune moms who were diagnosed prior to getting pregnant. I haven't been able to find very many.  What was your experience with autoimmune disease and pregnancy?

Being an Autoimmune Mama: Stronger than I thought

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Recently, my husband and I took our first trip with baby to Florida.  It was lots of work to prepare to get away and it took lots of convincing to get me to agree to fly with an infant, but I am glad that we did it.  Overall it was a great trip, but there was one adventure that I just had to share. 

It took me a day to get settled and feel comfortable.  We had gotten the baby into a new routine and now I was ready to relax.  I decided to take my very first bath since the little one was born. I had picked out an actual grown up book; I couldn’t wait to read while she napped quietly.  (This is a real luxury when you have a baby as I’ve quickly learned).  Just as I was beginning to feel like I was on vacation…the fire alarm started going off in our hotel. A false alarm? Not with my luck. A loudspeaker quickly blared that we must evacuate the building.  And where was I?  I was sitting in the bathtub in a room on the 12th floor.  My husband? He was downstairs on the beach.

So I found myself naked and alone with my precious daughter, hearing over a loud speaker that there was a fire.   A dream vacation memory in the making if there ever was one.  I didn’t have time to think. The adrenalin started pumping and I rushed into action.  My baby!  A fire! At first I almost ran out of the room without my clothes. I took a deep breath, threw some clothes on and put the baby in the stroller.

As soon as I got out the room, I started screaming in the hallway that I had a baby and needed help evacuating. There was nobody to be found. Everyone must have been at the beach for the day.  I headed toward the fire exit and started a twelve floor race down the steps, carrying my daughter in her stroller.  (I’m not sure if any of you have lifted a stroller recently, but they aren’t light).

I thought about carrying her down in my arms, but that didn’t seem like the safest option.  The stairway steps were concrete and I wanted my baby protected in something in case we encountered a fire.  I kept thinking over and over, “I must save my baby,” as I ran down the stairs, carrying probably over 35 pounds of baby and stroller. Any thoughts I had of stopping were erased when I smelled smoke in the stairwell. My heart raced faster and my legs took on a life of their own. I was glad for me pre-pregnancy attempts at a stairmaster.

It seemed like the run down the stairs was never-ending. Those fire safety messages from grade school ran through my head, but I wasn’t sure how they were going to help me in a stairwell. As I was nearing the bottom, a nice woman and her middle school aged son helped me to carry the stroller the frame the rest of the way.   When I made it through the fire exit onto the street, all I could feel was utter relief. 

Any thoughts if my sprint had been worth it disappeared when I saw two large fire engines and police vehicles camped in front of the hotel building.

I searched the crowd and saw my husband in the distance and screamed for him. He was petrified of course and had sent someone from the hotel to go and help us get down.

And you’ll never guess the cause of this whole hulabaloo, it was a dryer that had caught on fire.  It was classified as a minor incident according to the police and fire officials.  But it was a fire. For me personally, however, it was major event.

Who would have thought that I would actually have the strength to do something like that?  On a good day lifting 10 pounds can exhaust me.

It gave me the confidence to know that as a person with autoimmune disease, I am up for the major challenges of parenthood.  While I might have to do things differently and creatively, when it comes down to it, I will jump through hoops to protect my daughter.  I also learned adrenalin is some pretty powerful stuff.

 

Being an Autoimmune Mama: The First Months

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The last months since giving birth to my daughter have been a wonderful adventure, surprising in so many ways... and overwhelmingly exhausting.  It’s hard to describe how much I’ve learned in such a short time from the basics of how to change a diaper and swaddle a baby –-which seemed daunting at first—to how so many things about motherhood feel instinctual to me.  I never understood how my friends would talk endlessly about the small things they would do with their babies. Now, I love the cuddling, cheek kisses, and silly games we play daily. Things that are interesting only to a parent of an infant, but now bring delight to me daily.  

At four months, we've now crossed the early infant stage and we're getting to the more interactive stage of the daily smiles, coos, and hand sucking that are all so much fun.

Now, for my confessional: I must admit that I had real fears before she came was that I would not be able to take care of her because of my health issues.  My worries ranged from big picture fears to specific practical concerns.  I literally lost sleep worrying that she would miss out on what she deserved from her mommy.  I didn’t want her to feel less love than other babies do because of my own health needs.

At the same time, I was also worried about the day-to-day practical challenge of lifting her and taking her around.   Would I be able to carry her if I was tired?  Would she just be trapped inside most of the winter because of neuropathies and arthritic pain? 

So far, I am pleased to be able to say that I have been pleasantly surprised. Yes, I am tired like any new mom…but I am thrilled to report that we are all ok. I am generally as healthy as I was prior to my pregnancy. My daughter, after an early arrival, has caught up and is growing and advancing well.

That’s not to say this has been easy.  My husband and I took steps to make sure we could mitigate the amount of strain I would have. We knew flexibility would have to be our motto... When interviewing pediatricians I realized distance would have to be a factor.  One got extra points because she lived a five minute walk from our house. Then, I wouldn’t have to lift the little one in and out of a car for every doctor’s appointment and could conserve some energy. 

At times, I would hear other moms to be and moms discuss their exact birth plans or how they would exclusively breastfeed and never give their child formula. My husband and I knew we had to approach everything with a different philosophy…what keeps me and baby healthy is the goal--not ultimate perfection. 

Here a few other steps we took to manage a baby with a chronically ill mama that I thought I’d share:

1)   Get Help! Let other family members pitch in and even feed your baby especially during nighttime hours so you can rest.  I found this extremely helpful for the late evening feeding around 11pm or midnight so I can go to sleep early and get some rest before middle of the night wake-ups.  As others know with autoimmune disease, sleep is key and without it symptoms can get worse. 

  

2)    As long as she eats, we’re ok! While breastfeeding is considered best according to my doctor, we also decided before our daughter was born she would also have formula sometimes to preserve my strength.  (It turns out that because she was underweight the pediatrician insisted that we supplement with formula anyway.)  Breastfeeding is exhausting even for healthy moms, but add autoimmune disease into the mix and it can be very depleting.  I breastfeed and pump as much as I physically can (about 5 times a day), but having formula as an option makes it easier for me to take a break when I need to.

3)    Convenience is key.  As I mentioned above, try to make everything as easy as possible for yourself like having a pediatrician nearby. There have been so many more doctors visits than I expected that being able to get there easily has been the most important thing.

4)    Limit Carrying. I try to carry less and order online if possible.  The need for diapers and baby supplies is constant.  When I lift things, I get more tired so I’ve found diapers.com and other baby sites to be a lifesaver.  They are also cheaper, especially when I find discount codes that I track down regularly.

5)    Freeze, Freeze, Freeze. If someone offers to cook for you, say YES.  Having a baby is depleting and I didn’t have the strength to cook at first.  Now that I’m basically recovered, there really isn’t much time to make a wholesome meal. I’ve tasked my mom with making food for me and freezing it so I have something that I can heat up quickly and have ready within minutes.

7)    Assign Tasks.  Being a mom means being a manager. If you’re lucky enough to have family and friends helping you, make sure to have jobs for them.  I promise something always needs to get done whether its dishes, laundry, or sterilizing bottles. Otherwise, everyone will just stare at your little bundle of joy. I learned this one the hard way when I found myself doing dishes after company came on four hours of sleep.

8)  Take time to be a family unit too.  I must admit having our home invaded with family has driven is driving my husband and I a little crazy.  We try and balance all the company by having one day a week when it’s just the three of us.

9) Hand-me-downs help!  At first I thought we would need to get everything ourselves since we had no family nearby with young kids. I found out that the more I talked to friends about what I was looking for, people started sending us stuff. Friends, relatives form afar, even friends from a moms group have all generously been happy to share . (I promised to give everything back of course.)

This is just a short list of things which have made having a little one easier as an autoimmune mama that I wanted to share. What have some of you done to make the infant phase a bit more manageable while living with autoimmune disease?  I'd definitely love the advice and I'm sure other moms  with chronic illness would to.

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!

Happy World Sjogren's Day!

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. 

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.

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!

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.

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.

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.

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.

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.**