Friday, December 28, 2012

The Holiday Hubbub and Autoimmune Disease

I just heard on the radio today that the average American goes out 16 nights a year in December, by far the most social month of  the year. (I have no idea if this is exactly accurate, but it does feel to me like my friends and husband have events almost every night.) When I heard that I was exhausted. For someone like me that's impossible. I managed to make it to one friend's birthday and one event for my husband for brief appearances. I thought that was a major victory. For me, it was.

Not that I or anyone should have to go out 16 times in a month, but just hearing it reminded me that having autoimmune disease makes me not average in many ways. I am proud that I made it to 2 non-family events this month, no matter what others do.

Do I wish that I could have made it to more celebrations and seen more family and friends.

Of course.

But if I had done more than I knew that I could physically handle, it might have had an adverse effect on my health.  There was lots of careful planning involved to get to these parties feeling well or well enough.  In my pre-autoimmune days, I used get ready at the very last minute.  Rushing to get dressed and literally running out the door in a pair of 3 inch heels (my heels have been replaced by flats). Now my routine is the opposite.

I know what I will wear in advance so I don't waste energy trying on outfits at the last minute. I plan out everything I need to do  before I leave  -- taking medicine, eating early, packing my purse and make a mental or written schedule with slotted time to rest.  Even if I organize everything perfectly, there is still the possibility that my autoimmune disease will keep me home.  I am not sure my very type A personality will ever completely come to terms with that fact.

But this season, I made it to the 2 events that were the most important to me and my husband.  Two more events than I did last year when my health was very unstable and that is progress!

Tuesday, December 18, 2012

Giving 'em Lip - Sjogren's, Salivary Glands, and More Fun

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A few months ago, I developed what l thought was just an ulcer on my left inner low lip. Mouth ulcers can occur with autoimmune disease and I have gotten them in the past so I thought little of it.  However, unlike other ulcers I have had, this one never went away in the following weeks.  It would grow and shrink, but it didn't completely disappear. It became more of a problem when it got in the way of chewing and I bit down on it by mistake.  It was not a very pretty picture and I was left with a multi-colored purple and red ulcer. (Apologies for the overly graphic descriptions, but I know they help me some times to compare what I have to what others' describe.)

In both October and November, I did show my mystery mouth ulcer to one of my physicians. He didn't seem very concerned and suggested a baking soda rinse to see if that would make it go away. Unfortunately, the baking soda rinse didn't do the trick and when I was back in his office he decided to take a closer look and feel this growth. The ulcer was hard and he said needed further investigation--maybe even a biopsy --to find out what was going on.  Like most patients with numerous medical conditions, my first thought was "oh no not another medical problem!"

My personal preference is not to have anything invasive done unless it is absolutely necessary even if it was what many doctors would consider a minor procedure. I'd love to hear what happens to others, but whenever I have "minor" procedures I seem to get all the "unexpected" side effects.  I'm convinced it's because of my immune system's malfunctions, but most doctors just don't take it into account when ordering invasive tests. Of course, I tell them and they say "don't worry" and then it happens to me. Yep, I'm the one who still has a numb lip from my Sjogren's biopsy. So instead of agreeing to go ahead with the biopsy, I  figured I wanted to see what my ENT might say later in the week at an already scheduled appointment.

Luckily, my ENT physician identified the cause of my mystery mouth sore immediately. It actually wasn't a sore or ulcer at all, but a cyst or mucocele cause by a blockage of minor salivary glands in my lip. The salivary glands are involved in the inflammatory process of Sjogren's syndrome, which is why many of us with Sjogren's have dry mouths and sometimes painful and enlarged salivary glands. (You can see the picture above of salivary glands.) I was aware with Sjogren's that the major salivary glands the parotid, submandibular, and sublingual glands can become blocked or swollen, but it turns out that we also have somewhere between 600 to 1000 minor salivary glands located throughout our mouths in places like our lips and inner cheeks. These minor salivary glands can also be impacted by Sjogren's, which is apparently exactly what is happening to me.

For now, the ENT doctor said we can wait and see if the cyst resolves with increased hydration and warm salt water rinses, but most likely I will need to have it removed.  Even though it is considered an "easy" procedure, I am very much hoping that it will go away on it's own and to avoid having any sort of cutting of my lip.  If folks have had experiences getting rid of these without a procedure I would LOVE any suggestions.

Friday, December 7, 2012

Sjogren’s, Vitamin-D, Neuropathy, and Lymphoma

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Those of you who follow me on twitter (@autoimmunegal) know that I am always tweeting health and medical research studies on autoimmune diseases. Yes, that may make me a little bit of a nerd, but that is OK with me. Along those lines, I recently came across an interesting study (thanks to a tweet from the Sjogren’s Society of Canada) that I thought was very important to share.  This study from the Journal of Autoimmunity found a link between primary Sjogren’s Syndrome (pSS) patients with low vitamin-D levels having peripheral neuropathy and having lymphoma. 

It is important to mention that this research is the first to find a relationship between low vitamin-D and the risk of lymphoma for those with Sjogren's.  There have also been very few studies to date examining vitamin-D levels and their impact on Sjogren's patients.  The authors write with regard to neuropathy that “vitamin-D deficiency may be a component in the pathogenesis of neuropathy in pSS.”  They then conclude that  their research “may warrant the need for a tighter monitoring of vitamin-D among patients with pSS."  You can see the article's abstract by clicking here.

Low vitamin-D levels have been correlated with autoimmunity in some studies.  In addition, vitamin-D has been found to have a protective effect in preventing the development of AI diseases such as lupus, rheumatoid arthritis, autoimmune thyroiditis, and Type 1 diabetes.  Some studies have even shown that higher levels of vitamin-D are associated with decreased cancer risk including for non-Hodgkin’s Lymphoma, but as is often the case with scientific research there have been conflicting studies and controversy in this area.  Basically vitamin-D seems to be powerful stuff. 

When I was diagnosed with Sjogren’s almost two years ago, I was found to have both low vitamin-D levels and severe neuropathy.  This study might shed some light on patients like me and serves as big reminder that I best keep taking my vitamin-D supplement.  I take a daily over the counter supplement and I do try to have foods high in vitamin-D a few times a week, but that doesn't always raise my vitamin-D level high enough.  When my levels are low, my doctor usually prescribes a 12 week course of 50,000 IU of D3 once a week.  That usually does the trick to get my vitamin-D in normal range.  

The results of this study certainly gives me and others with Sjogren’s MAJOR reasons (lymphoma and neuropathy) to talk to our doctors about vitamin-D and take our supplements if they recommend it.  I actually haven’t had my vitamin-D levels (a simple blood test) checked in some time so that will be added to the list to discuss for my next rheumatology appointment in a couple months.  If you want to read more about vitamin-D and autoimmune diseases, check out some of the links I listed below (please feel free to add your own as this list is far from comprehensive). To learn more about lymphoma and Sjogren’s, click on this link to a recent post from Julia’s blog Reasonably Well on the topic.

Were your levels of vitamin-D low when you were diagnosed with autoimmune disease?  By the way, make sure to talk your doctor before making any changes to your vitamin supplements.

Thursday, November 29, 2012

My Best Laid Plans: Yoga and Autoimmune Disease

It is always a bit of a shock how quickly my health can change with autoimmune disease. Twenty-four hours ago, I was  planning to go to my first yoga class in a number of years.  It was advertised as a gentle, restorative class for those with  health conditions and chronic illness.  I've heard and read that yoga at the right pace can be helpful for those with autoimmune conditions. It was something I had been thinking about doing for a number of weeks and this would be my day.  For  me, this was a big step--feeling well enough to participate in a group activity or class--a real indication of my health  progress.

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So I created a schedule for the morning to make sure that I got out of the house, putting the time of eating breakfast and even taking a shower into my smartphone.  I was trying to plan and schedule for all possible contingencies so there would be no  reason that I would not make it there.

Ha. Well, this contrary body of mine had a different idea. It reminded me that I don't run my calendar. It's my body that  has the big say.

Instead of going to yoga, I found myself in nerve pain once again. Just when I felt like it had been away long enough that I could plan my own schedule.  Once it started, I knew that yoga was out of the question.  My day went from being centered around  trying a new activity to just getting through the hours, minutes, and even seconds of the day. I started to write about my pain, but decided no.  Not now. I'm not going to let it back in.

I kept running over in my head was there something I did that triggered this.  Did I over do it with Thanksgiving travel and  family activities? I know that's not how it works, but at times it's impossible not to think this way.

Well, here's hoping this is a temporary problem caused by some combination of new medication and cold weather. We'll all find out together I suppose. If you read a post about yoga next week, you'll know things are under control.

For now, I would love to hear about others' experiences with yoga who have autoimmune disease and if it has been beneficial.

Tuesday, November 20, 2012

Preparing for IVs, Sticks, and Pricks

Getting my blood taken, being hooked up to IVs, and having infusions have become a fact of life for me.  It's a regular routine I know I share with many other sjogren's patients and those suffering from other autoimmune conditions.

I've learned a few things over the years that helped me and I thought I'd share. Hopefully others have tricks or tips they can add to these suggestions.

My veins are hard to access. It's not something I thought much about before being sick, but it sure makes life difficult now. The nurses trying to stick, prick or prod me in various ways always had a hard time getting a vein to work, resulting in a number of sometimes painful attempts and an array of multicolored bruises.  I knew the needles weren't going away, so I embarked on a new routine to see if I could improve the condition of my veins. In combination, the practices below have helped quite a bit over the past few months.

Weight Lifting. No, I'm not turning into a body builder. (As my husband reminds me the steroids I take don't lead to Barry Bonds type home runs.) However, I realized that I was weak from being basically unable to exercise for three years because of illness. I needed to build up my arm muscles to make the veins come to the surface. I started to to lift weights at home to build up my arms. Initially, I tried curling 3 pound dumbbells…but they were too heavy for me after I tried just a couple of bicep curls.  I then moved down to 2 pounders and these were much more my speed. I started very slowly and have since been able to work my way up to doing a variety of exercises with the 3 pound weights. Maybe I will eventually make it to 5 pounds if this vein building routine continues, but that is probably a little ambitious. I can visibly see the difference in the veins in my arms and hands.

Drinking Water. This may be obvious to many, but I started making a point of super-hydrating 24 hours before my infusions. It's made a difference in making my blood easier to access. 

Hand Warmers and Gloves.  My hands are usually cold from Raynauds and I find the temperature in hospitals is never quite comfortable.  I knew having cold, blue hands always made for a hard time putting in an IV, but I wasn't sure what to do about it.  When I was at a sporting good store one day, I saw a box of hand warmers and a thought popped in my head. What do you know, they helped a ton.  Whether it is winter or summer, I now show up to the hospital wearing a pair of over-sized gloves each filled with two hand warmers.  I don't take them off until the nurse is about to stick me. It really helps my veins pop out. 

You know that you have spent too much time getting medical care when the improved condition of your veins becomes a source of pride. I realize this is probably not the most interesting post for the average reader, but these tips and discoveries have made a huge difference for me and I thought they might be useful to others who frequently get blood taken or infusions.  Please share away if you have others.

Friday, November 9, 2012

Telling My Health Where We Stand

It is currently Wego Health's National Blog Post Month (#NHBPM).  My favorite prompt from this week was to write a letter to your health.  I love this idea and figure it is about time that I have a heart to heart with my health and let it know where we stand.

Dear Health,

I have a question for you. Can you take a vacation?

You should know by now that no matter what rare or difficult health problem you lay down on me that I will refuse to give up.  Whether it is Sjogren's and its roller-coaster of complications--including autoimmune neuropathies, uveitis, or, as it is right now, angioedema--that you have put me through, I will research treatments and find the right physician who can help me no matter what the challenge.

It seems that you never really rest.  My guess is that your favorite game is whack-a-mole. Yes, it must be what you play. Just when you get one condition under some control, you get bored and decide something new needs to occupy you.  Well, I can play whack-a-mole right back. I will keep fighting to knock you back into your hole.  I am determined to live as normal a life as possible despite your tireless efforts to prevent me from doing otherwise.

This does not mean that there are not days where you seem to be winning -- the days when I am in pain, fatigued, my joints hurt, it is hard to catch my breath, or my face swells up like a balloon.  But I will not stop and I will not give up.  While I must try to accept that that you will not be a stranger anytime soon, continuing to be one of the most challenging parts of my life, I will not let you break my spirit. And when I have those moments of mental fatigue and my hope is waning, I will lean on my husband, family and friends to support me and encourage me onward. I will make you cooperate in some way.

I will not only spend my energy trying to fight you and be as healthy as I can, but I will also work to bring awareness and research funding to Sjogren's and other autoimmune diseases. I hope that you will become more pliable, controllable, as new treatments emerge.  That you will no longer be the ultimate struggle and hardship in not just mine but so many people's lives with chronic illness.

I must admit that while we are at odds, I have learned a lot from you.  I am resilient and a fighter and can handle much more than I ever thought or really wanted to for that matter.  I do still implore you to get tired and take a long vacation one of these days. It would allow me to take a much needed health holiday from doctors and medicines and not feeling well, but as long as you insist on being hyperactive --I have my boxing gloves perched and ready.


Saturday, November 3, 2012

Reflections on Sandy

Darkness of Sandy
Like many others across the northeast, I have been affected by Hurricane Sandy.  My husband and I are some of the lucky ones. Our home is intact and without major damage and most importantly, we and our loved ones across the region all made it through the storm safely.  We are still without power, heat and phone, as are many in our area .  The tragedy of the storm is obviously widespread, but I thought given the topic of this blog I'd add some color on the everyday challenge it poses for someone with my medical conditions. For a couple hours on Friday, I was able to make my way to an office that has power to warm up, charge up, and write this quick post.

Living without power and heat has added a new dimension to trying to manage my health conditions.  Taking medicines, cutting pills and trying to make sure that I am taking the right one in the right amount by flashlight is definitely a challenge. There has also been the issue of timing of medication. Yes, I am one of those people who rely on my cell phone to tell time and I never wear a watch.  Those watches that I do have are tucked away somewhere very safe, definitely not too be found during a long-term power outage.  This obviously leaves more room than usual for error, but taking my medicines a bit off schedule is better than not taking them at all.

Luckily (and not by my own volition) I knew where all of my medicines were when hurricane hit.  My husband, a former Boy Scout, made me pack an emergency “to go bag” in case we needed to leave our home with a moment’s notice.  Yes, I did complain and whine when he insisted I put them all in a bag by the door...since it was inconvenient to keep walking over to use them, but, as much as I hate to admit it, he was right.  If it weren't for that bag, my medicines would not have been organized and easy to access in the dark.

In addition, I have major food challenges.  As I have written about in previous posts I have very severe food allergies, my newest one being to the ubiquitous corn.  Most non-perishable foods have corn or corn derivatives in them, which makes refrigeration particularly critical for me.  And I can't risk needing medical services when many of our hospitals are without power and closed.  Thank goodness we bought a five pound bag of rice before Sandy hit to keep me going and there have been dry ice distributions to keep some of our perishable items cold so that I have something to eat.  One saving grace is that we do have a gas stove, so I have been able to use it while I am cooking by flashlight.

So, here we are, living like it is 1900.  Playing cards by flashlight and listening to an emergency crank radio that my mother bought me a few years ago (clearly my family worries more about disaster preparedness than I do).  It was charming the first night, but by day two were were ready for things to start to return to normal.  Signing off for now as my brief stint with electricity is over for today.  Perhaps we will be lucky and have power tonight.

Monday, October 22, 2012

Sjogren's Conference at Baylor University

There is going to be a Sjogren's conference this weekend at Baylor University in Texas.  Since I'm located super far from Texas, I won't be able to attend.  Hopefully some other Sjoggies out there will be able to join and report back to the rest of us.

The other good new is that Baylor has recently opened its own Sjogren's Center that includes includes rheumatology, otolaryngology, dental medicine, and ophthalmology.  It joins the University of San Francisco, the University of Pennsylvania, Johns Hopkins University, and the National Institutes of Health which each have a Sjogren's Center or Clinic.  Every center offers a slightly different model in terms of the specialties of the physicians that practice there.

The purpose of these centers to provide a more comprehensive, multidisciplinary, and coordinated level of care to patients--a one stop shop for your most of your Sjogren's needs.  While nothing in medical care is ever quite that simple, the idea of having doctors located in the same hospital who focus on Sjogren's makes quite a lot of sense to me.  I do hope more of these centers start to emerge.  It will mean that more attention and funding is being given to Sjogren's, that physicians are focusing seriously on the disease, and those with Sjogren's will hopefully be diagnosed earlier and get better care.  Let's hope this is a growing trend!

Sjögren's syndrome conference at Baylor College of Medicine Oct. 27

HOUSTON -- (October 16, 2012) -- Learn more about Sjögren's (SHOW-grins) syndrome at the inaugural Sjögren's Syndrome Conference at Baylor College of Medicine Oct. 27. The conference will be held at the Lee and Joe Jamail Specialty Care Center, 1977 Butler Blvd., Houston, TX 77030, room E4.125. The event is from 9 a.m. to 1 p.m. ending with a question-and-answer session with lecturers.

Since this disease has a wide range of symptoms, experts from more than five different specialties will be on hand presenting background information, as well as current research surrounding their field related to the disorder.

There will also be a presentation about the new Sjögren's Syndrome Clinic at BCM, which began seeing patients this summer.

Sjögren's syndrome is a disorder of the immune system that causes white blood cells to attack moisture-producing glands throughout the body. Symptoms include dry or burning eyes, dry mouth, difficulty swallowing, peeling lips, increased dental decay and vaginal and skin dryness. People frequently experience severe fatigue and joint pain and many patients have involvement of other organs, including the lungs, kidneys, brain and digestive organs. Sjögren's can occur alone but many cases occur along with other autoimmune connective tissue diseases like rheumatoid arthritis, lupus or scleroderma.

For reservations, please contact Shani Corbière at or call 281-221-0068.

Schedule of Conference Speakers:

9 a.m. - Introduction
Shani Corbière - Sjögren's Syndrome Houston support group director

9:10 a.m. - BCM Biology of Inflammation Center Dr. David Corry - chief of immunology, allergy and rheumatology at BCM

9:20 a.m. - BCM Sjögren's Syndrome Clinic Margaret Olfson - senior ophthalmic technician in ophthalmology at BCM

9:30 a.m. - Rheumatological Manifestations of Sjögren's Syndrome Dr. Tara Rizvi - assistant professor of medicine - rheumatology at BCM

9:50 a.m. - Dental/Oral Manifestations of Sjögren's Syndrome Dr. Charles F. Streckfus, professor, Diagnostic & Biomedical Sciences at University of Texas School of Dentistry at Houston

10:10 a.m. - Question and Answer session

10:25 a.m. - Break

10:40 a.m. - Head and Neck Manifestations of Sjögren's Syndrome Dr. Nadia Mohyuddin - assistant professor of otolaryngology - head and neck surgery at BCM

11 a.m. - Eye Manifestations of Sjögren's Syndrome - Dr. Stephen Pflugfelder - professor of ophthalmology at BCM and director of the Sjögren's Syndrome Clinic

11:20 a.m. - New Research findings at BCM Dr. Cintia de Paiva - assistant professor of ophthalmology at BCM

11:35-1 p.m. - Question and Answer and Discussion

Tuesday, October 16, 2012

Sjoggie Leaf Peeper

One of my favorite activities at this time of year is to drive to the country and go leaf peeping.  It might sound like a strange and maybe even dirty phrase, but in the northeast it just means viewing the bright and beautiful colors of the fall foilage.  That is just what my husband and I did this past weekend.  It was particularly special because we had had to take a break from this tradition in previous years when my autoimmune illness was undiagnosed and not yet treated.  The bumps and vibrations of being in the car had caused me intense neurological pain so there was reason for celebration on this sunny fall day.

Even though it is already mid-October, the leaves were just starting to turn in our neck of the woods.  It was still gorgeous scenery and being in nature and away from the hustle and bustle of daily city life is certainly soothing.  We stopped at apple orchards along the way and the apples were juicy, crisp, and right off the farm.  While I have to admit that I was beyond completely tired by the time we got home and had to retreat to the sofa for a number of hours, this was one of those times it was definitely worth it.

Here are some pictures from our little road trip:

Thursday, October 11, 2012

Sjogren's Eye Drop Klutz

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If I haven’t stated it before, I have always been a klutz and accident prone.  I sometimes trip just walking down the street.  If you leave a computer plugged in next to me, there is a good chance I will trip on the cord.

What most recently landed me at the eye doctor is slightly embarrassing.  (It is also not the first time that some variation of this has happened.)  I was doing a little reading in bed and started dozing off.  I hadn't put my eye gel in and decided in my half asleep fog that I might be able to do it without a mirror.  Well, I was able to get the gel in my eye while at the same time poking my eye right under the eye ball.  It did hurt and my eye felt achy.  I wanted to ignore that it didn't quite feel back to normal the next day, but on better judgment and my husband’s reasoning with me, I decided there was nothing to lose in having it checked out.  I have 3 or 4 ongoing issues with my eyes so taking good care of them is a big priority.

Well, the good news is that the eye doctor saw no abrasion of my cornea or the white of the eye.  I have poked my eye two other times when putting in eye drops or gels over the last two years.  Only one of the times did I need immediate medical care and actually scratched my cornea.  Usually I make this stupid mistake, when I am tired and not paying enough attention to what I am doing.  

In my defense because I have Sjogren’s, my eyes are extremely dry and require continuous drops to provide some moisture.   I also contend with other eye conditions such as corneal inflammation, uveitis, and blepharitis that require medication.  This means that I am putting drops in my eyes on average 12 times a day or 4380 times a year.   So by this calculation it is not unreasonable to mistakenly poke oneself in the eye three times in two years with an eye drop, right?  Still, feels pretty dumb to end up at a doctor for that reason.

I think that I will have to put a hand mirror on my nightstand for anymore attempts to put in drops from bed.  I can’t be the only person with Sjogren’s or dry eyes that’ve had this kind of accident.  What are your tips for avoiding those eye drop pokes?

Tuesday, October 9, 2012

Nursing Care As It Should Be

While I often devote many of my posts to problems with the medical care I encounter, I do think it is just as important to share my good experiences with medical professionals.  I have been fortunate over the last number of months to have had stellar nursing care when I have been at the hospital for infusion treatments.  These nurses make the ordeal of my monthly treatments at least bearable; and without their care and support I’m not sure that I could tolerate what I repeatedly go through.

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First and foremost, these nurses are obviously good at the medical part of their job.  In my case, they are constantly adjusting my infusions and dealing with the challenge of a having a highly allergic patient.  This usually means extra attention and care, which means extra time.  In addition, the nurses’ jobs are clearly stressful on a daily basis.  Every time I receive treatment, I see some sort of emergency situation arise during the day with one patient or another.  Yet, they are always handling these situations, seemingly with ease.  They take care of the problem and don’t ever seem to lose track of what’s going on with the other patients.   I know this is no accident and that they are highly trained to do just this, but it is still something I find remarkable.

But what led me to write this is post is not just the obvious things they do, but the assortment of little thinks they do that make having to spend time at the hospital a little less of a drag for me.  In short, these nurses provide humanizing care that helps me and I am sure other patients get through difficult health problems.

So many examples come to mind.  I am thinking of one nurse in particular who hugs me upon my arrival.  We share stories about our families and recent events in our lives.  When she finally met my husband, she was excited to put a name to his face and now asks about him every time I’m there.  I am not made to feel like just another patient or a nuisance, which has been the case in many other hospital situations I have had.  It seems to bother her more than me when she puts in my IV. She goes as far to apologize when she puts the needle in and especially if she has to do it a second time.  I know she really does care and such compassionate treatment is rare and truly makes a difference in how a patient feels.

I often observe how she and her co-workers talk to other patients as well. It is really they who explain the side effects of medications and treatment in an understandable way from what I can see.  On many occasions, I have heard other patients thanking these nurses for telling them something that they had no idea about or didn’t quite understand after their visit with their physician.  It is this rapport and relationship building that makes patients comfortable enough to ask a question and share information about a medical problem they are having, and as a result, better medical care occurs.

At the same time, I believe the welcoming atmosphere that the nurses create fosters an overall sense of camaraderie among patients at the infusion center.  I have my regular cross word puzzle buddy who is a grandmother, 40 years my senior.  There is my friend who accompanies his mother for infusions who started to bring me free movie tickets when he learned that I was a fan.  Patients share cookies they have baked.  You get the picture.

I do wonder if others have had similar experiences.  I am also curious if anyone has tried to track the effectiveness of various infusions centers, with patients receiving the same treatments.  I have to believe that the quality of the nursing care in the way they administer treatments, solve problems, and answer questions can really make a difference.  I am certainly grateful for the nurses who treat me and try to let them know it every chance I get.

Monday, October 1, 2012

"You Only Have Sjogren's"

"Only."  If it were "only" anything. What a dreaded word for many of us afflicted with this condition.  It's something I, and most others I know, have heard variations of before...from friends or colleagues.  But I don't expect to hear it from a doctor.

I was seeing a dermatologist for complications my doctors believe were related to my autoimmune disease. The resident came in first and asked about my rheumatological history.  When I said I had Sjogren's--which is only one part of my complicated history--his comment was, you guessed it, "You Only Have Sjogren's".   I could have strangled him with his stethoscope right there. Really? Only?  Like he had any idea what that meant.

At that moment, I decided that I needed to speak up instead of reaching for his neck.  If I had said yes, I would have been an accomplice in aiding and abetting ignorance. Playing into his ignorance that Sjogren's was not a serious, potentially multi-system, and disabling disease.  So, I opened my big mouth trying to strike a balance between being polite and firm and decided to start educating.  I informed him that "saying I only had Sjogren's is just not accurate" and I went on to outline some of the specifics of my illness and how it has affected my life. I included the fatigue, joint pain, eye pain, pulmonary problems, and, in my case, cranial neuropathies as well.  He seemed to think Sjogren's was just the dryness disease.  I almost laughed as I told him "I wish."  I am hoping that hearing my story of the years until diagnosis (some painful irony that this doctor was with the same hospital which had never figured out my diagnosis) and the range of symptoms I possessed would change how this doctor viewed the disease and would treat his future patients.

I have heard other doctors and lay people make this type of statement before. Though I always found it troubling in the past I would have often said nothing.  But I've decided educating everyone I can is a small thing I can do for others with Sjogren's.  If patients with Sjogren's like me are not going to educate others, the widespread lack of awareness will certainly stay the same.  People will continue just to associate Sjogren's with dry eyes and dry mouth--aliments that many consider a nuisance and can easily be managed (although we know even those symptoms are not so simple).  They will not understand how you can be disabled when you have Sjogren's and assume you can function just like anyone else.

I'll give the resident some credit. I think after recovering from being stunned after my lecture, he seemed to understand this was something he probably should think more about in the future.

This whole exchange got me thinking and doing some additional research. I wondered what the standard literature said. A little bit of google research took me to the American College of Rheumatology Sjogren's Patient Education Page.  Lo and behold, Sjogren's is made to sound like a very manageable disease where symptom relief mostly focuses around dry eyes and dry mouth.  A few eye drops and you should be all set. Complications beyond dry eye and dry mouth are made to seem like rare anomalies and it would appear those with Sjogren's have to make very few life changes.

To quote them:

A vast majority of patients with Sjögren's syndrome remain very healthy, without any serious complications. Patients should know that they face an increased risk for infections in and around the eyes and an increased risk for dental problems due to the long-term decrease in tears and saliva.

Rarely, patients may have complications related to inflammation in other body systems, including:

  • Joint and muscle pain with fatigue
  • Lung problems that may mimic pneumonia
  • Abnormal liver and kidney function tests
  • Skin rashes related to inflammation of small blood vessels
  • Neurologic problems causing weakness and numbness
In a small number of people, Sjögren's syndrome may be associated with lymphoma, a cancer of the lymph glands.

Well, lucky me I've got four of them.  Most others I know who suffer from the condition have multiple symptoms and the list above is not even extensive (Check out this diagram from the Sjogren's Syndrome Foundation for a more comprehensive list of symptoms).  The broader medical community still seems very much behind the times with autoimmune diseases.  I'd say the burden for educating them and the broader public has to begin with us. If not us, who?

Tuesday, September 25, 2012

Remembering a Friend

I am finding it very hard to write about my own health issues right now.  All I can think about is a very close family friend who tragically lost his three-year battle to brain cancer this morning.  This young man was diagnosed at the young age of 24 while a law student. He was determined to stay in school, become a healthcare lawyer, and live as normally as possible. He just wanted to get on with his life, past his cancer, and every time he was about to the horrible, pernicious tumor would start to grow again.  He went to some of the best hospitals and went through multiple surgeries and therapies, doing everything that could be done.

The two of us bonded over being young and sick.  But I knew that his prognosis was much worse than mine.  I just tried to put it out of my head.  I hoped and prayed that he could beat the odds.  He deserved to beat the odds.

What always struck me about him was his wonder at the world.  He wanted to learn things and soak them in-- and he was just really beginning to when he got sick. I can't think of any explanation for why this happened.

When I spoke with his mother on the phone the other day as her son was taking a turn for the worse, she told me how hard it was for her son not to be able to do the things he wanted to with his life, as well as not to be able to do small things for himself.  She said what is most important is being part of a family unit. This couldn't be more true.

I had a dream the other night that he was in his hospital bed on a tiny and beautiful tropical island with white sand.  The island was so small it looked like it was just floating in a sea of pristine blue water. I pray that he is there right now, free of his hospital bed and his illness and most of all peaceful. And that he knows how much his family and friends love him.

Friday, September 14, 2012

Lyme Surprise

So cute, but....
Coming back from vacation is always somewhat of a let down.  This time it was a little more than just not wanting to return to reality that made returning home unpleasant.  So soon after writing about what a wonderful time I had away, I have some not so good news and another medical adventure to share. 

On our final day of vacation, I woke up with a mild headache and noticed a red rash on my arm. My first thought that was that I must have gotten too much sun the previous day.  I am fair skinned and have gotten sun rashes in the past.  I took over the counter headache medication and thought little of it for the rest of the day.  However over the next 48 hours it became abundantly clear that I was definitely sick.  My head was throbbing and I was intensely nauseous—not to mention my rash was still there and it was very hot to the touch.  I contacted my internist and thankfully she fit me in immediately.

Once she looked at me, my internist was sure I had Lyme disease and needed to begin treatment with doxycycline antibiotic immediately.  I had been in area with a large deer population making the Lyme disease diagnosis more likely.  Lyme disease gets worse the longer it is left untreated; and given that I am immuno-compromised and have autoimmune disease, early treatment was particularly critical. 

I also had to stop taking steroids so that my immune system could properly fight the Lyme bacteria called Borrelia burgdorferi.  For now, I am extremely weak and will be planting myself on the couch and doing all I can to allow my body to recuperate.  This means doing my best to do nothing, which should not be hard given the way I am feeling.

I am far from pleased that I have another health aliment with which to contend and I hope that my body can fight it off appropriately without any long term consequences.  On the positive side, I am lucky that I did get a rash that caused me to go to the doctor sooner rather than later. Not everyone with Lyme disease gets a rash. I am also lucky that my internist saw me right away and got me started on treatment immediately.  I am trying to find a silver lining to keep my spirits up during this new health challenge.

To learn about the transmission, signs and symptoms of Lyme disease check out these links from the American College of Physicians and CDC

Tuesday, September 11, 2012

Successful Vacation

I had a wonderful week away at the beach with my husband.  What made the week special was that I was healthy enough for the first time in three years to enjoy our vacation.  I was able to play tennis for short amounts of time and enjoy the beautiful beaches and scenery.  There is something very soothing and meditative about watching the ocean.

Not being in intense neurological pain this year on vacation was a gift.  I was wishing, hoping, and praying before our trip that this year we could please just enjoy ourselves--that I would not be relegated to bed most of the trip or suffering and trying to smile despite how horrible I felt. When you are in that much pain, time goes so slowly and this vacation went by quickly.  

We settled into a routine to help manage my fatigue and sun sensitivity.  We could do an activity in the morning and late afternoon, but in the middle of the day I needed to rest and stay inside out of the sun.

I truly felt like a kid again.  Some of my favorite parts of our time away were just playing pool frisbee with our friends and barbecuing in the evenings.  Yes, we were acting half our age even though we are all in our 30s.  And I found myself laughing again, well really I am a giggler, something that I had been able to do little of just a year or even 6 months ago.

Friday, August 24, 2012

Rooting for Venus

I know that many with autoimmune disease have been following Venus Williams since her Sjogren's diagnosis last summer.   I certainly have and she has really helped bring a voice to what it is like to live and learn to live with AI disease.  There was a recent interview with Venus leading up to the US Open that I wanted to share.

Venus is shutting down all speculation about retirement from singles and had recently made it to the semifinals at the Western and Southern Open in Cincinnati last week and won an Olympic Gold in doubles with Serena in London earlier this month. Williams shared that she is "doing a lot better than this time last year...So much better than a couple of months ago, as well.  I am learning to deal with everything a lot better."

The article continues that "in her first few tournaments after the seven-month layoff she would panic if she woke up feeling stiff or tired.  A loss was inevitable.  Now, she's starting to figure out how to hang in there even on the bad days and still get a win.  She has changed her diet...and is letting her body dictate her activity instead of always pushing through."

While I am very very far from a world class athlete, this kind of evolution and adjustment is something that I can certainly relate to.  Learning not to feel defeated when I wake up not feeling well and replanning my day accordingly without letting frustration get the best of me can be a challenge.  Becoming flexible about my schedule because each day with AI disease can be a bit of a surprise -- sometimes good and other times not so good.  This need for flexibility does not come naturally to me, but it is something that I am getting better at.   I have also learned, the hard way, the lesson of not pushing through when my body is begging me or even subtlety telling me to stop.  The end result is never good -- and usually if I just stop, rest, and take a break, I will probably be able to get back to what I need to do later that day or hopefully the next day.

Thanks for sharing Venus, and I will certainly be watching and rooting for you in the Open.

*Photo Source*

Wednesday, August 22, 2012

New Food Allergy Reveal - King Corn Causes Concerns

Image Source

Wow, just when a girl thinks she has her health problems heading in the right direction, something new always seems to come up.

I wrote a few weeks back about being tested for new food allergies. I was having pretty frequent swelling  of my lips, throat, and cheeks when I ate and I couldn't pin point what was causing these frequent and acute reactions. The test came back and (drum roll please) I am highly allergic to corn.  I had never been before, but now my allergic level was off the charts.  At first when my allergist told me, it didn't seem like anything that would be too hard to manage.  I thought corn on the cob and high fructose corn syrup.  But then as I began to understand the ingredients that I would have to stay away from it became a whole new ordeal. I haven't written about the allergy until now because it has been so difficult to manage and is taking up so much of my time.  It is much harder than my other food allergies and I am overwhelmed.

One of the main challenges with having a corn allergy is that corn is not considered a top eight allergen so it is not required to be listed on the allergy warnng label for a product or even identified as corn in ingredient lists.  This means that ingredients such as food starch, vanilla, vegetable oil, carmel and carmel color, maltodextrin, cellulose, vegtable glycerin, xanthum gum, and baking powder are often derived from corn, but corn is nowhere to be found on the label.  The list of ingredients that can contain corn is much more extensive and can be found here if you want to take a look.

Ok, so you would think once I have a list of ingredients, I'd be all set....not so fast.  I have found out this is only part of my problem.  Who would of thought that eggs are often washed in corn starch and that the coating for paper plates are often derived from corn?  A lot of the plant based environmentally friendly packaging for foods is often corn based as well and so is the wax coating on fruits and vegetables. These are being used more and more frequently and are hard to identify.  I'm now in a place where I have allergic reactions to foods that I am not allergic to because of how it is packaged or if corn is somehow used in its processing.  I had an allergic reaction to rice cakes and later learned that the rice cakes are made on the same exact equipment as corn cakes.  Cynics would say the strength of the corn lobby has something to do with it not being a recognized allergy by the FDA, but all I know is that the world I inhabit is not designed for people with corn allergies.

On to medicines: They are a whole other area of difficulty since they also contain corn as binders and fillers.  I had an allergic reaction to plaquenil (a medicine that I take for autoimmune diesease) and after looking at the indredients found it contained corn starch.  The NIH Pill Box Site has been a great resource so I can look up all the drug manufacturors that make a particular drug and their ingredients.  But then I still have to call each one individually to see if there is hidden corn in the ingredients because it is often listed as food startch and cellulose but does not identify it is dervived from corn or another source.  Luckily, there is one brand of plaquenil made without any corn derivatives.  For medicines that are not manufactured without corn like many antibiotics, I have had to go to a compounding pharmacy to have the drugs made. The suspension syrup used to make most drugs also contains corn so the pharmacist has been making some of my other medications with the chemical form of the medication and then distilled water.

I also forgot to mention everyday beauty products like lip balm and shampoo often contain corn listed as some other chemical compound too.  I have been more focused right now on finding foods that I can eat and making sure that I can take my medicines.  I am spending lots of time on the phone calling manufacturers to find out if there is corn in specific foods and medications.  I am making use of my local farmer's market and hope that by talking to the individual farmer's I can find out directly if corn is used in making their food.  I have been cooking all my own meals, though they are rather unexciting, and using websites created by other's with a corn allergies as a resources.  But figuring out this whole corn allergy is extremely time consuming and I have not yet had a straight week since being diagnosed, where I have not had an allergic reaction to something.

I keep joking with my husband that we might have to move to another country where the corn industry and the use of corn products is less pervasive.  If only, corn was listed as a top allergen, it would be a bit easier. I would love to hear any advice from others who also have a corn allergy.

Wednesday, August 15, 2012

Calling My Doctor's Office: It Shouldn't Be This Hard

 Photo Source
I had an experience with my internist's office recently that just made my blood boil--and I know that many other patients have had similar interactions with their physician's offices.  My doctor had nothing to do with the interaction and it was a phone call with one of her office administrators that I am writing about.  It was a clear reminder why healthcare can be so unfriendly to patients and why for people with chronic illness constant interaction with the medical system is a stress on its own.

I called my doctor's office to deal with a timely and serious medication issue and to send recent abnormal test results.  I was doing what I was supposed to do--responsibly addressing and coordinating my own medical care between doctors' offices.  The story in brief is that the administrator on the phone repeatedly scolded me for calling the phone number that I did.  She kept repeating, "do not ever call on this number it is for emergencies and for physicians."  I explained that this is the phone number that my internist has specifically given me to call.  (Not to mention that my internist has also given me her cell phone number and direct email and there is good reason for this. She has told me I am one of her most complicated and sickest patients.)

Despite my best efforts to relay the instructions my doctor had given me, it was no use--the scolding just continued.  When I was finally able to relay the reason for my call, which was nearly impossible because the administrator was trying to get me off the phone as quickly as she could, she again repeated that I was never to call this number again. I felt as if I was being treated like a child who is told she had misbehaved.  Not surprisingly, the administrator did not help me with either of the two issues I was calling about.

The reason I see this internist is because she takes my health problems seriously, is responsive and compassionate, and encourages me to be in touch.  But this administrator clearly finds my interaction and communication with the physician bothersome.  I wish that I was not sick and did not require ongoing medical care.

The last thing most people want to do is be involved with a physician's office.  The people who work there should serve as a kind and a effective conduit between patient and doctor, making what is often an unpleasant experience better.  While this is not always the case, I have found that some administrators in physicians' offices seem to relish serving as a barrier between patients and doctors. They are officious as opposed to helping patients. 

I am sure this administrator's work is not always pleasant since it requires dealing with anxious and upset patients at times. But that is the nature of the job.  A helpful and friendly staff member behind the front desk or on the phone at a physician's office can make a huge difference for patients and their families.

As a patient, our best recourse is to file a complaint when we are treated poorly and if the situation is bad enough to leave the doctor's practice.  The next time I see my internist, I will tell her about my interaction with this staff member.  Doctors are in charge of their offices and it is their responsibility to make sure those who work for them do their job well.  In my opinion, there is a real problem in the culture of healthcare when patients, the consumers of healthcare and those who are sick, are treated as the enemy.  

Wednesday, August 1, 2012

New Find: Aveeno Baby Mineral Block

I generally don't do product reviews (and rest assured none of them are sponsored) but when I find something that's particularly helpful to me for my autoimmune related issues I do try to share it.

Sun protection is very important for those of us with autoimmune disease.  Many autoimmune conditions are sun sensitive such as lupus and Sjogren's and getting too much sun can cause or make flares worse.  I, like many others with autoimmune disease take medications which can further increase sun senstivity such as plaquenil and steroids.  While I definitely love the summer and warm weather (my joints do too), it is a balancing act to enjoy the outdoors without getting too much sun and hurting my health.

One of the problems that I have had is finding a sunblock for my face that does not cause me to either break out in unflattering pimples or to get a rash from one of its ingredients.  Of course, it also has to do its job of protecting me from the sun.  Over the last few months, I have tried many and have finally found one that seems to do the trick for my face.  It is Aveeno Baby sunblock stick SPF 50+.  As the name suggests, it is actually made for babies over six months of age, which might be part of the reason it does not bother my sensitive skin!

The Aveeno is technically a mineral block or sunblock as opposed to a sunscreen and I have recently learned that there is a difference.  A mineral block or sunblock sits on the surface of the skin and is not chemical  based.  It usually contains zinc oxide and/or titanium dioxide. These are the active ingredients in the Aveeno Baby sunblock stick.  Generally, sunblocks are less likely to irritate sensitive skin.  Sunscreens on the other hand are chemical based and have to be absorbed into the skin in order to effectively block UVA and UVB rays.  The downside of sunblocks or mineral blocks like the Aveeno is that they do not always easily rub in.  The Aveeno does leave a white film and I do have to use a little elbow grease to blend it in so that it can't be seen.

The stick is compact, easily transportable, and fits in a purse or a pocket.  Because it is not a liquid, there is little risk of it spilling all over your things.  I carry it in my purse and reapply every couple of hours.

Here's a link to the site if you want more information:

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

Wednesday, July 25, 2012

Food: Why Hath Though Forsaken Me?

Was it really less than three days ago that I wrote about my experience with food sensitivity testing (see here) ordered by my ENT physician and my plan to try some new diet modifications based on the results?  It seems that my body or more aptly my immune system has a different plan in mind and food sensitivities will have to take a back burner for the present time to deal with some unexpected and severe food allergy problems.

I already have serious diagnosed Type I food allergies, the most challenging being to onions and the whole onion family, but the list also includes tomatoes and most tropical fruits.  (The onion family ends up being used in everything making it hard to trace.) Over the last 2 plus years I thought that I had gotten these food allergies under control gosh, darn it!  Cooking my own food, paying careful attention to ingredients, and only eating at a handful of restaurants where the chef and wait staff are willing to take the extra steps so there was no cross contamination in my food.

Photo Source
About a month ago, my husband and I went out to eat with another couple (an activity that has become a new treat since my autoimmune disease symptoms have improved over the last few months) and, lo and behold, my cheeks and lips started swelling. My cheeks felt tight and stretched out and I definitely started to look like a chipmunk.  This from a plain piece of grilled fish. Of course, it had to be a work dinner for my husband when this happened--need I mention the first work related dinner I had been able to attend with him in 3 years. Since I was eating plain fish I assumed there must have been some cross-contamination with onion or one of the other foods in the onion family.  I took benedryl and had my epi-pen in my purse at the ready, but, thankfully, the benedryl worked. I thought that was the end of that.

Unfortunately, it has since become clear that I was entering a whole new chapter of my allergy challenges. Welcoming back my throat-swelling has not exactly been like finding a long lost friend. I am most likely now allergic to something new, making the last several days a roller coaster.  I have again had swelling on multiple occasions, even when preparing meals at home or eating foods that are part of my usual diet. Clearly new foods are wreaking havoc but I am having a hard time figuring out what could be the cause. When my usual breakfast this morning led to another one of these swelling episodes, I knew that I needed to go to the allergist office to start to try to figure out what might be the new allergenic culprit(s).

While we are trying testing to isolate the new problem, we have yet to reach any clear conclusions on the cause of my new allergies. (I'll spare the details but because I'm on steroids, testing and getting clear results is more complex than normal.) In the meantime, since I am now so reactive and we don't know why I have been put back on an elimination diet.  I have had to do this in the past and it is no fun. You slowly add each new food one by one back into your diet, record what you eat daily, and note every allergic reaction. This approach means not eating foods with multiple ingredients, like cookies or breads from the grocery store, because if you do have an allergic reaction it is then impossible to parse out which ingredient is the cause. As I said, no fun.

Being so allergically activated is challenging (and dangerous) in its own right, but making matters worse is that treatment options are limited by my autoimmune disease...while at the same time the reactions themselves put me more at risk for an autoimmune flare. Because I have Sjogren's syndrome, anti-histamines make my dry eyes and dry mouth much worse and also increase my ear pain (related to my eustachian tube dysfunction).  This is the delicate balance that my allergist and I are trying to piece through together. I wish it felt more like science than trial and error.

While my autoimmune disease is what has materially changed the quality of my daily life, I know first-hand that allergies can be life threatening.  Where does that leave me?  At the moment, trying to get my recovery back on track.  Just when my autoimmune symptoms were under control enough that I could begin to socialize and start participating in the world again, my allergy symptoms decided not to cooperate.  I don't have an easy solution. I would like to find a creative way to distract my immune system from attacking the wrong things.  Could I teach it to meditate? Yoga perhaps? Or maybe long distance running.  Anything to distract it from attacking me...and the food I love.

Monday, July 23, 2012

The Alphabet Soup of Food Reactions

Photo Source

I had previously written about how I had finally found an ENT physician who figured out part of the problems that I have been having with my ears.  It was more than a welcome relief to have some answers when he diagnosed me with eustachian tube dysfunction and chronic sinusitis both of which are not uncommon issues for patients with Sjogren's Syndrome.

Part of his strategy for dealing with these problems was to test me for food sensitivities something that I had never had done before or heard much about.  His hypothesis was that the blood tests would show that I had multiple sensitivities and eliminating some of these foods from my diet might help improve the sinus and ear problems that I have been having.  And I would certainly prefer to eliminate food from my diet if that means not having to have be on antibiotics or getting tubes in my ears, which is a procedure I would like to avoid!  And I have already become accustomed to adjusting my diet substantially due to a number of serious food allergies.

Food allergies and food sensitivities are distinct.  I am (un)lucky enough to have a number of diagnosed food allergies which have landed me in the emergency room on more than one occasion.

Food Allergies are very serious and involve a histamine reaction to a food exposure in this case that can cause asthma, hives, and at its most serious swelling of the tongue and tightening of the airways that can cause anaphlyaxis and can even be fatal. They are often called IgE mediated allergies because during exposure to a food allergen, an individual's B cell's mistakenly recognize the allergen as a foreign invaded and produce IgE antibodies.

Food Sensitivities are a delayed food reaction where symptoms may appear up to three days after eating a food.  Symptoms might include bloating, headache, migraine, joint pain, sinusitis, and fatigue, and other aliments depending on the person.  Food sensitivity testing measures whether IgG antibodies increase when an individual is exposed to a particular food. 

My doctor did tell me that food sensitivity testing is controversial in the United States and tends to be more accepted in Europe.  Interestingly, my physician, who is an ENT surgeon, began food sensitivity testing when a some of his patients did not improve as much as he had hoped after surgery.  He did see further improvements, however,  in many of these patients when they modified their diets based on findings from the IgG tests.

Well, I got my test results back from his office and the testing confirmed that I am intolerant to gluten and wheat.  Luckily, I had already eliminated gluten from my diet almost nine months ago and it made a huge difference in my constant stomach upset and joint pain.  However, there were a few other food items that came up as problems and some of them seem very hard to part with including coffee and baker's and brewer's yeast and then there are some which are easier to avoid such as green beans, egg yolk and ginger.

I liked my doctor's approach on the baker's yeast which is in almost all processed foods including those that are gluten free such as breads, cookies, and bagels was to do my best, but it will be very hard to be 100 percent perfect.  So this is a bit of an experiment in the works.  Will I be ambitious enough to try to make my own gluten free bread without yeast?  I am not sure yet, but I will provide an update as to how this goes, if I am able to stick to taking these foods out of my diet, and if I notice any changes.  The good news is that IgG reactions are not life-threatening and are often not permanent so it is possible after taking an IgG positive food out of the diet for a number of months, to reintroduce the food in small amounts in the future.

Have any of you been tested for food sensitivities by your physician and has an elimination diet of these foods been helpful to your health or any of your autoimmune disease symptoms?