In Sickness and In Health…

32 years ago today, I married my best friend. Little did he know that when he said those classic words that we all relate to our marriage vows (in sickness and in health), that he would be tested on a daily basis.

It’s easy to be the loving spouse when things are going great and life is good.  But what happens when chronic illness joins the marriage and family? The patient with chronic illness is not the only victim.

I tried to reverse the situation in my head to contemplate what kind of spouse I would have been all of these years if my husband had been the one dealing with chronic illness.

Would I have:

• Been there before, during and after all 16 surgeries and medical procedures?
• Been by his side for important doctor visits?
• Cared for our children in every way, when he was unable to?
• Worked a full day and then cooked, cleaned, took out the garbage, did laundry and met everyone else’s needs on numerous occasions when needed?
• Run to the pharmacy to pick up prescriptions or over-the-counter medications when he needed them, but did not feel up to the errand?
• Offered to rub and massage every painful hand, foot, neck or back whenever needed and then did so?
• Deliberately brought flowers, a movie or simple surprise just to cheer him up?
• Always been a caring and supportive listener at times that he felt down and needed to vent or cry?
• Always cleaned up pet accidents, no matter how gross, because I knew that he had a weak stomach and could not?
• Stood by his side with a thermometer; liquids and a cold rag for his forehead when he dealt with an acute virus or flu?
• Stood by his side, holding his head when he heaved over a toilet with nausea?
• Always kept a positive attitude and made every effort to cheer him up whenever he was feeling anything less than happy in spite of how I might have been feeling?

I could go on and on…

I would like to think that I would have been and have been the extraordinarily kind, wonderful, loving and generous spouse that my husband has been to me all of these years.

11,680 days…In Sickness and In Health, till death do us part.

SjoHappy

Glutton for Gluten?

You may recall that I blogged about watching Dr. Oz’s ” Leaky Gut ” T.V. episode recently. And you may even remember me having mentioned that when it comes to my diet, I am at a crossroads of confusion. To date, I have yet to determine the right course to take.

I find myself trying to figure out some sort of fusion between a gluten-free and anti-inflammatory diet. I mean, is there such a thing? I have no serological evidence to suggest that I am intolerant to gluten, yet I see that some of my fellow Sjoggies and Autoimmune Friends follow a Gluten-free diet and claim to feel better. I admit that I think it is worth a go to try to find out. I mean what have I got to lose at this point? Maybe a few aches and pains if I am lucky. And what’s a little withdrawal from foods that I crave in the quest for better health.

Yet, every time I think about trying to start (and totally commit in a non-cheating way) to any regimented food plan, I find myself in some sort of action paralysis. Do any of you feel that way or is it just me? I don’t know whether it is the learning curve I am reluctant to deal with. Or whether I am listening to that little voice in my gluten-filled head that keeps telling me there is no way that I can give up every gluten-containing food (and more importantly…dessert) that I have spent my life eating, regardless of the inflammation hell that I live in.

But last night I may have received a sign that it is time. When attending our semi-annual Condo Homeowner’s Association Meeting, we were introduced to a new neighbor couple. When speaking to the gentleman and discussing the typical ” and what do you do” type questions…here it came. The couple owns a nearby market that sells all Gluten-free and Organic products. Further, he teaches about the Gluten-free diet and Celiac Disease at one of the local hospitals. It appeared to be a sign to me…just like the red, neon flashing signs we produce in our business.

He might have been a bit worried when he saw how my face lit up..especially when I said, “Oh, my goodness..what great timing”. ” Not only can you instruct me on how to adopt the Gluten-free life..you can also be a speaker for our new Sjogren’s Support Group”. Poor guy. He probably felt like every physician feels when they are accosted at out of work events, to answer people’s random medical questions. If so, he was very gracious of my genuine, gluten-free enthusiasm and did not appear to be sending out the ” rescue me “ look to his wife.

I have now arrived at the ” It’s time to quit talking about it and just do it “ gluten-free starting point. I am working on making a serious attitude change from what I am giving up…to what I am gaining. I will try hard not to focus on the proven fact that my willpower when it comes to sweets (either gluten-free or not) is totally absent. Of course it did not help to reinforce my very early gluten-free decision when the neighbor indicated that eating just one non-gluten-free cookie would stay in one’s system for 6 weeks. What a red-flag message that was to my usual diet-cheating self.

So here goes…we are taking the Gluten-free eating and education plunge for better or worse. Stay tuned for my Sjo-gluten-free updates.

Enjoy your weekend everybody!

SjoDry

 

Novel Aspects of Sjogren’s Syndrome in 2012

As presented from the April 4, 2013 edition of the BMC Medical Journal: Novel Aspects of Sjogren’s Syndrome in 2012 

This article is lengthy, but has a lot of great information, if you have the time,  please take a look.

http://www.biomedcentral.com/1741-7015/11/93

Patience Grasshopper…

It is said that ” Patience is a virtue”. I wouldn’t know, because I was blessed with so little. And the small amount that I possess is quickly depleted on silly things. In the last few weeks, I have found myself thinking about the fact that I am always waiting on something or someone. In fact, when I think back through the years, I can recall many times when I was forced into a “waiting “ situation that I did not choose or want to be in.  If you think about it, I suspect that the majority of waiting situations are tolerated more than
anticipated. As a child, waiting typically involves excitement and much anticipation about something positive that we are excited about..a new toy, a recreational event, a visit to Grandma’s and so many other things. I didn’t have patience as a child either. And no amount of a prodding or repeat directives from any adult, for me to ” be patient “ changed my condition. I suppose it is one of those things…ya either got em’, or you don’t! I don’t. As I got older, I had more waiting…waiting to get married and then the waiting that came with infertility and adoption. The waiting for job promotions or downsizings. The waiting when our kids were sick, to see if it was something serious or not. Of course we waited it out (along with a healthy dose of prayer) to see if our kids would arrive to adulthood as competent, independent adults that could handle their own lives.

We are currently waiting and living out our senior dog’s last weeks/months together. We are always waiting (and holding our breath) to see if our small business will continue to be successful and provide a roof over our heads and food to eat.

And the absolute, without a doubt, most frustrating type of waiting that I have had my entire life and continue to have, is the mind-numbing waiting that I am forced to endure as it relates to my medical problems. I wait for appointments; I wait for return calls; I wait for test results; I wait for copies of tests and office visits; I wait for a correct diagnosis (this is a lifelong waiting exercise); I wait for the discovery of a great compassionate doctor (s) who will care enough to help me; I wait for medicines to work; I wait for referrals to all of the specialists I need to see; I wait for insurance to give pre-determination approvals for meds or medical procedures; I wait for prescriptions and prescription refills; I wait for energy to get things done; I wait for the few good days that I occasionally have; I wait to find the docs who will believe me….YES I wait..and wait…and WAIT. Can you relate? Unfortunately, this waiting thing does not get any easier for me, no matter how long it lasts or how old I get. I have not gotten any better at it, but occasionally I can anticipate a work-around or time-saving measure to save a few minutes of waiting. The one thing that I know for sure, is that I have a serious case of “waiting” and it looks like it’s terminal.

SjoDry

Why Not Me?

WHY NOT ME?

We’ve all heard the saying that there is strength in numbers and that could not have been more true than with the first meeting of our Sjoggies in Pittsburgh (SIP) initial support group meeting that was held on May 4, 2013.  Typically one expects that a support group might only  have a few people show up at it’s debut, but will add members as the momentum builds and the word gets out. Imagine my surprise when 16 other folks (in addition to myself and the other co-leader) eagerly attended our first meeting. It was clear that there are many Sjogren’s Syndrome Patients who are seeking to connect with others. give/receive support and gain education/ information about their condition. 

Of course when I first learned that I had Sjogren’s, one of my first thoughts was that I would like to find a Sjogren’s Syndrome Support Group. I quickly realized that there were none in the Pittsburgh area. Having led an Adoption Support Group many years ago, I briefly thought about starting a Sjogren’s group, but decided that between my full-time job, volunteer roles and the daily Sjogren’s symptoms I experience, that the idea might be a little too ambitious. I then received a call from another Sjogren’s patient who was directed to me from the Sjogren’s Foundation. As we chatted, we both expressed  frustration that there was no group. By the end of the call, we had both decided that we could team up and co-lead a new group.

One of the thoughts that many people who are dealing with Cancer, Autoimmune Disease or any chronic illness frequently have, is the “why me“ question. But as Pamela (my co-leader) and I talked, we found that we both had arrived at a conclusion of “why not me“. Why shouldn’t we step up to the plate and reach out to others in coping with a very challenging illness.? Why shouldn’t we do all that we can to bring exposure to the second most common autoimmune disease, when so few people know about it?  Why shouldn’t we do what we can to help raise research funds for the Sjogren’s Syndrome Foundation? Instead of sitting back and waiting for someone to take the ball and run with it..why not us?

As I watched our new members mingle, mix and share phone numbers and emails, I had to smile. Each of those people came to the meeting, unsure of what it would be like or whether it would even be worth their time. I was gratified to watch supportive connections being made. There was a palpable buzz around the room as people realized that they were not alone in this crazy, symptom-filled journey. Yes, there is strength in numbers. And I have always felt that helping others is particularly therapeutic for me. So here’s to our new SIP Journey and all of the new friends that we make along the way.

SjoDry

Venus Williams Steps Up for Sjogren’s Awareness

BETHESDA, MD–(Marketwired – Apr 25, 2013) – The Sjogren’s Syndrome Foundation (SSF) is excited to announce Venus Williams as the Honorary Chairperson of our Carroll Petrie Foundation Sjogren’s Awareness Ambassador Program. “Venus’ willingness to share her story makes her a great Awareness Ambassador. Her courage gives hope to many patients who live silently with Sjogren’s because of the lack of awareness around this disease. The SSF is thrilled to have her leading the charge,” said Steven Taylor, SSF CEO.

Sjogren’s (“SHOW-grins”) is a systemic disease in which the body’s immune system mistakenly attacks its own moisture producing glands. The hallmark symptoms are dry eyes and dry mouth, but fatigue, muscle and joint pain are also prominent symptoms. Serious manifestations can occur, such as life-threatening lung involvement, central nervous system complications and disorders of cognitive functioning. Nine out of ten patients are women with an average age of onset in the early 40s. However, Sjogren’s can occur in all age groups, even in children.

Sjogren’s is the second most prevalent autoimmune disorder, striking as many as 4 million Americans with an estimated 3 million cases currently undiagnosed. Early diagnosis and treatment are important for preventing complications with Sjogren’s. Unfortunately, reaching a diagnosis is often difficult and has been found to take an average of over 4.7 years from the onset of symptoms. Only when Sjogren’s is recognized as a serious disease will patients receive the care needed.

Venus, like many Sjogren’s patients, struggled with getting a proper diagnosis, which is why she wanted to be a voice for Sjogren’s. Awareness Ambassadors help to educate their community and local medical professionals about Sjogren’s and are the front lines for helping the Foundation achieve our 5-Year Breakthrough Goal: “To shorten the time to diagnose Sjogren’s by 50% in 5 years.”

Venus hopes you will step up for Sjogren’s Awareness! “By becoming an Awareness Ambassador, you will be helping to increase awareness of Sjogren’s — a very important cause I have been working on since I was diagnosed in 2011. Please join with me as we make a difference in how Sjogren’s is perceived in both the medical field and general public.” — Venus Williams

The SSF wants to recognize The Carroll Petrie Foundation whose generous grant, supporting the Awareness Ambassador program, will allow us to provide the materials needed to increase awareness in communities across the United States.

Elizabeth Trocchio or Steven Taylor

Sjogren’s Syndrome Foundation

301-530-4420, ext. 216

Email Contact

http://www.sjogrens.org