Wednesday, April 30, 2014

Sjögren's Awareness: The Sjö Test in Action

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

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

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

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

Tuesday, April 8, 2014

Missing Out and Chronic Illness

Image Source
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 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.