And The COUNTDOWN is on…

2014 Sjogren’s Syndrome Patient Conference

After having attended my first national Sjogren’s Syndrome Patient Conference last year & having enjoyed it immensely, I am officially excited to attend this year’s conference. Of course I feel that it is my duty to turn into a Sjoggie Sponge & bring back all of the latest cutting-edge information, research and SSF directions to our Sjoggies In Pittsburgh (SIP) support group. In fact, that will be our next topic at our May 3, 2014 SIP meeting. And for those of you who understand my cognitive decline..don’t worry, I’m taking Sandy, my SIP Co-leader, and a paper/pen for my information back-up system.

Put On Your Trusted Shoe Inserts..

Yes, Sjodry and Sandy (and hopefully some of our SIP members from Pittsburgh) will be participating in the Chicago Sjogren’s Walkabout. It is our chance to put in our most trusted shoe inserts and take to the (hopefully warm & sunny) streets of Chicago to help raise funds for the Sjogren’s Syndrome Foundation. But don’t be alarmed because I don’t SWEAT! Or at least not much.  LOL, can you relate? Not sure if that’s a Sjoggie silver lining here or not?

Everyone has their own way of coping with their illness(s). For me, I blog, I use humor & I reach out to others to help them in our shared journey of living with Sjogren’s and chronic illness. I don’t know about you..but I do my fair share (and my husband might disagree with the word fair ) of whining about how bad I feel. In fact, I could probably just take a piece of paper & write the same sentence multiple times on a page & then just complete all of the blanks which apply on that or any other given day. So when I get a chance to help the foundation or someone else in a way that I know I can accomplish without triggering a a flare…I am there.

For those of us who live with Sjogren’s Syndrome each day, we have learned over the years about how many people have never heard of, understand or even treat Sjogren’s Syndrome. To me, that serves as a call to action! I have spent thousands of dollars through the years in trying to find a physician that could identify what was and is still happening to me, diagnose it properly and then find an effective treatment plan. I want the best quality of life that I can have. I believe that all Sjogren’s patients deserve to have the best quality of life that they can achieve. That means doctors, dentists, dental hygienists, immunologists, rheumatologists, eye doctors and all of the many other medical practitioners in our communities at large, MUST become knowledgeable about Sjogren’s Syndrome in every aspect. It means that we need copious research to develop definitive tests and treatments for the disease.

A Call To Action!

So how can you help?

There are many ways to lend a hand to the Sjogren’s Syndrome Foundation during April, which is Sjogren’s Awareness Month (or any month for that matter). Becoming an Awareness Ambassador for the foundation is a volunteer role that requires whatever amount of time & energy you can share, whenever you feel like sharing it. There is only one task for the Sjogren’s Awareness Ambassador, and that is to deliver Sjogren’s Syndrome Information to a health professional. The foundation may choose a specific time period  and designate a specific type of doctor that they would like to target with the information. Or you can just pick. Now think about how many doctor’s appointments we have? I always have at least 2-4 doctor’s appointments monthly, and sometimes more. All I do, is pick up a small stack of Sjogren’s materials that have been sent to me from the foundation. While I am at my appointment (either before the appt. or after), I let my Doc know, that by the way, as an Ambassador to the Sjogren’s Foundation, I have some materials for you about Sjogren’s Syndrome. That’s it! Done…I have just done my Ambassador duties. Again, no sweat.

Another way that you can help is by participating in a Sjogren’s Walkabout. The foundation folks are really nice in helping to plan the walkabout routes. You see, they know that there are a lot of Sjoggies (like me) who have foot neuropathies and may not feel like walking too far. But since I have already completed one Walkabout last year, my feet have given their ‘Not Too Far Or You’ll Be Sorry” stamp of approval for the Chicago Walkabout. But you still may be saying, ” My feet won’t allow it “ or maybe you’re not even coming to the conference this year. And that’s okay too. That is why the Sjogren’s Foundation has teamed with with the First Giving Folks, an organization that helps Non-Profit Organizations to set up various fund-raisers in a diverse group of cities.

And with that….

comes my.. “if you are so inclined pitch, with an opt out choice”.  Some people choose to support others in their Walkabout efforts. Sjodry has created a Chicago Walkabout Team named in honor of the (SIP) Sjoggies In Pittsburgh Support Group in which she co-leads in Pittsburgh, PA. Both co-leaders of the group and select Pittsburgh SIP members who have chosen to attend this year’s conference will revv up their enthusiasm for a Walkabout Chicago en Sjoggie masse.

If you would like to support us in our fund-raising efforts, you may find Sjodry’s (Sandy Burkett) First Giving Page at this (link).

If I look cool after I complete the walkabout…pictures will follow.

Sjodry

S & S 2014 Sjogren's Syndrome Walkabout

 

 

 

 

 

 

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Arrogance and the average physician..

Physician arrogance happens daily and I have, unfortunately, been on the receiving end of such treatment from doctors on too many occasions through the years. I am happy to report that I have established my current dream team of courteous and caring doctors who no longer talk at or talk down to me. But this has not always been the case. And it is not the case for many others.

As I routinely visit the online Sjogren’s Forum, I see daily posts from people describing the horrible, rude and dismissive treatment they receive from their physicians. Their symptoms are often minimized, ignored or left untreated. I have to say after reading about other patient’s negative doctor experiences for so many months and experiencing this treatment myself, it surely appears that there is anarrogance” epidemic among physicians. What’s worse is that this rude and undeserved patient treatment can serve to shut a patient down from further seeking treatment for their condition(s).

Sjogren’s Syndrome is a very difficult autoimmune disease to diagnose. It can take many years to identify Sjogren’s Syndrome in patients. The symptoms behave like a disappearing act. One day a patient presents with joint pain; swollen glands and neuropathy, while the next day their symptoms are completely different.

Imagine taking your car in to fix a noise that you hear at different times when you are driving and you have had it for many weeks. When you arrive at the auto repair shop with your car, the car does not make the noise. (we can all relate to this) Does the repairman not believe you as a result? Does he speak in a condescending voice and tell you that you probably didn’t hear a noise and it was probably in your head? Does he offer advice by telling you just to go home rest and try to reduce some of the stress in your life? No. Because the auto repair shop is a “for profit” business, in the exact same way that a physician’s practice is.

Now granted, all people know how many years a doctor has attended school. We know that they have paid big bucks and made sacrifices to obtain skill sets that enable them to be called doctor and “expert” by the medical and non-medical community at large. But for a very large number of physicians, it seems that they have also earned a degree in arrogance.  It seems also, that somewhere along their medical school journey they forgot the reason that they went into medicine. I am sure that some doctors just wanted a cushy salary. But I would assume that most doctors chose the field of medicine to help people. I mean, they have to take the Hippocratic Oath that says that they will do no harm to people. In my opinion, that should include the behavior of chiding the patient in a condescending tone; making the patient feel invalidated and not believed.

Making a choice to spend many years and dollars to attend medical school, does not give any physician the right to treat people with  rude and sub-standard patient care. A person who is a patient, does not equal ” less than”. Regardless of one’s career choice and self-inflated and perceived status, people are people and should be treated with respect. I mean after all, they are the same people who pay your physician salaries.

If a patient is labeled with depression, perhaps their doctors have been contributing factors to the diagnosis. Unfortunately, I do not think that the rude behavior, once established, is likely to change. But we, as the patient recipients of such mediocre professionalism, can and should speak loudly with our feet.

Patients should never be put in a position that makes them second-guess their symptomology, pain and obvious illness. It is important, especially for those of us who live with chronic illness, to learn and to master our own medical advocacy. There are many compassionate doctors who do care & provide wonderful care to their patients. But it is up to us to be proactive in finding those rare gems.

Be strong and choose your doctors carefully!

SjoDrydoctor house

Posted in Patient Pet Peeves, Sjodry's Doctor/Dx Quest | Tagged , , , , | 1 Comment

My Wags, My Heart

My Heart

My Heart

Pets and Coping…

For those of you with pets, you will understand that a pet (no matter what type) becomes a member of your family. After having lost my precious Wags, a member of our family for almost 19 years, three weeks ago, I am compelled to write about how pets help us cope.

It is not just that they help us cope with illness, but with everything. The unbridled joy that a pet brings into your life cannot be measured. They make us laugh, they calm us down and lower our blood pressure after a bad day, they adore us at our worst and at our best. And we expect it. It is part of the deeply cemented bond that we make with our loving pets. We look as forward to greeting them when we walk in our doors as they do when we come home. How many of us have just had that absolutely horrible day, are feeling very depressed or crying..and our pets know and sense this? We can tell that they know we are upset and are right by our sides to comfort us. And no matter how many times I raised my voice through the years and even swatted her little behind for being unable to resist a good bag of garbage, Ms. Waggins just remained the loving and loyal companion that she was from puppyhood.

As much as our grown children were a part of our family, Wags was also. She brought joy to each of us in ways that will never be forgotten. She put up with toddler abuse, seasonal bandannas or T shirts and of the silly things we pet-owners find cute at one time or another with our pets. Yes, we are comforted that we were able to have her in our lives for almost 19 years. Not many people have that opportunity. Even in her senior years with joint pain, her hearing almost gone, cataracts which had taken control of her eyesight & physical walking so difficult..she obediently sniffed her way in the direction that I left a room, each time that I left and would pace until she could find me again. Yes, we were truly connected at the hip.

As I always did and am sure that you pet-lovers do as well, I had a repertoire of “baby talk” and pet names for my Wags. One of our family favorites was, “Dog of the World” usually said in a sing-song announcement to the world. Wags truly was the dog of our world and my world. She will live on in all of our memories and in our hearts. I hope that she is happily frolicking without pain and with the joy that she brought to our family. We’ll miss you Wags!

Love & Hug your pets!

Sjodry

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My Holiday Escape

Childlike Excitement…

It’s happened once again, as it does every year for me. In spite of the “way too soon” onslaught of Christmas Marketing, I find myself caught up in the annual excitement of another Christmas. It started when I was a child & we made our annual trips downtown to enjoy the very elaborate and animated Christmas windows that all of the department stores displayed. And it continues to manifest itself in so many ways. It starts with two day process of decorating the whole house to reflect my love of Christmas. Of course, I have passed this Christmas enthusiasm onto my daughter, which may be considered by some (my husband) to be a borderline addiction to ornaments and decorations. Of course I love the re-discovery of our family’s Christmas decorations and ornaments. It’s not just the fun of placing our child’s kindergarten clothespin ornament on the tree, it’s more than that. It is the feelings, emotions and memories that evoke so many past shared family Christmas memories. I can’t forget our annual tradition of all family members putting on their designated Santa Hat before the annual present-opening begins. It always makes me smile to see who can last the longest until complaining about the flaming heat under their hat.  Most of all, I get excited about watching those that I love, enjoying Christmas.

Childlike Wonderment..  it happens every year

No matter how bad I feel or hurt, I can always count on Christmas to help me escape some of it. My childlike wonderment of the season’s sights and sounds always give me some temporary respite from my unwanted autoimmune presents. That my friends, is a blessing that I appreciate. For that period of time, no matter how long it lasts, I am able to step outside of my chronically ill self and enjoy others. I am able to escape  into the same Television Christmas outcomes of, “It’s A Wonderful Life”, and The Christmas Story and never be tired of them. Of course I am able to make the same annual rationalizations about all of the Christmas cookies and candy that I am inhaling. But most of all family ties trump my pain, other symptoms and nausea.

I hope that you were able to create & escape into a lovely holiday memory this year. Here’s to a HEALTHIER & Happy New Year in 2014.

May the moisture be with you!

Cheers!

SjoDry

 

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Sjogren’s Syndrome….Research and Clinical Guidelines

It’s happening..Sjogren’s Syndrome is gaining more attention from the medical community with significant research to support it. It is well known by individuals within the Sjogren’s patient community and the Sjogren’s Doctors who treat them, that Sjogren’s Syndrome is not well understood by most everyone else.  That is, most doctors had the basic review of Sjogren’s in Med School, and typically look no further (if it occurs to them to connect all of the disjointed and confusing patient symptoms at all) beyond the hallmark dry eyes and dry mouth symptoms of Sjogren’s.

In 2014, the first portion of Clinical Guidelines for Sjogren’s Syndrome will become available. Among the first sections being developed to help physicians in diagnosing and treating Sjogren’s Syndrome are:

  • The Rheumatology/Systemic Manifestations  of Sjogren’s Syndrome
  • The Oral Manifestations
  • Ocular Management of Sjogren’s Symptoms

In addition to developing Clinical Guidelines, it is a very exciting time for Sjogren’s Syndrome research both in the United States and Internationally. Finally, physicians, scientists and researchers are starting to discover that there is more to Sjogren’s than what meets the “dry eye”.

An international coalition of researchers led by scientists recently identified six new Sjogren’s genes. What has always posed a problem in diagnosing Sjogren’s Syndrome, is the difficulty in identifying true Sjogren’s patients and collecting enough samples, partly because there’s still disagreement on the criteria for the disease and clinical testing is not easy. By identifying six new genes, the hope is that the discoveries will open the door for researchers to find therapeutics that work at the genetic level to stop the disease.

In addition to the above new research, I came across a study that was recently published as an abstract & presented at the annual meeting of the American College of Rheumatology by Dr. Alan Baer of Johns Hopkins. Dr. Baer reported the following information. Currently, the ACR classification of Sjogren’s Syndrome require at least two of these three criteria:

  • Positive serum anti-SSA and/or anti-SSB, or rheumatoid factor and an antinuclear antibody titer of 1:320 or higher
  • Labial salivary gland biopsy exhibiting focal lymphocytic sialadenitis (inflammation of the salivary gland) with a focus score of 1 focus/4 mm^2
  • Keratoconjunctivitis sicca (dry eyes) with ocular staining score of 3 or higher

The above criteria demonstrate how important anti-SSA and/or SSB are. However, these antibodies alone do not account for all cases of Sjogren’s Syndrome, and the presence of anti-CCP and anti-centromere autoantibodies may account for some cases of Sjogren’s Syndrome in patients seronegative for anti-SSA and anti-SSB. The presence of additional antibodies such as anti-CCP and anti-centromere may also define a group of Sjogren’s patients with overlap features of additional autoimmune conditions who do not meet the full criteria for these other diseases. Exploring alternative autoantibodies associated with Sjogren’s Syndrome and refining the standards by which lip biopsies are interpreted will improve the ability of physicians to identify and define this condition, Baer observed.  He further stated, ” I think when we start to be more exacting in how lip biopsies are read and defining other markers for the underlying autoimmune disease, the phenotype (observable characteristics) of Sjogren’s Syndrome may not prove to be as heterogeneous as it is at present”.

So there you have it, an explosion of new and potentially life-changing research that will..in time, make undiagnosed, semi-diagnosed and diagnosed Sjogren’s patient’s  journeys easier. For those of you who have spent years living the chronic illness life with so many unanswered questions, there is hope on the horizon.

Sjodry

Posted in And the research says..., Scholarly Articles and Such, Seronegative, Sjogren's In The News | Tagged | Leave a comment

SSF Clinical Practice Guidelines for management of Sjogren’s

Thanks to Julia at Reasonably Well who provided this recent article by Frederick Vivino. So glad that the professional medical community will begin to recognize Sjogren’s Syndrome in a more meaningful way.

 

Posted in Scholarly Articles and Such, Sjogren's Advocacy, Sjogren's In The News | Tagged | 1 Comment