Conquering Sjogren’s: Follow us on our journey to change the face of Sjogren’s

Ask the Doctor: Diagnosing Men & Children with Sjogren’s

Posted on Tue, Sep 30, 2014

Is there any speculation as to what’s driving this big upswing in the diagnosis of men and children with Sjögren’s?

My gut feeling is that it has to do with the improvements in awareness and medical and dental education in recent years. AJ newThe Sjögren’s Syndrome Foundation (SSF) has spent years trying to train the physicians and nurse practitioners about how prevalent and serious the disease is. We finally have a celebrity who unfortunately was diagnosed with Sjögren’s and although nobody likes to see somebody become ill, it has done a lot to help the entire public realize how serious it is, particularly the idea that people look a lot better than they feel and that it may take years to diagnose it unless you take the symptoms seriously.

I can tell you at the University of Pennsylvania, where I work, the oldest medical school in the United States, we only started giving our first Sjögren’s lecture to the first year medical students about four years ago. And that was only after years of me fighting with the curriculum committee to get it included in the rheumatology course for the first year students. So, we’ve made a lot of progress and I think that’s an example of the benefits of all this work.
-Frederick B. Vivino, MD, MS, FACR

This "Question & Answers" article was first printed in the The Moisture Seeker, SSF's patient newsletter for members.

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Topics: Diagnosing Sjogren's, Symptoms, Sjogren's, 50in5: Breakthrough Goal, Men with Sjogren's, Children with Sjogren's

Today, This is My Life with Sjogren's... AND I LOVE IT!

Posted on Fri, Aug 09, 2013

The following is post from a guest blogger, Richard a male SSF Support Group Leader in Idaho. We asked Richard to write about what he does to successfully cope with Sjögren’s.  

No, not the Sjögren’s, my life silly, and I believe in living it well and fully. I am a Sjogrenite, a father, a friend, a volunteer, master (or slave) to my yellow lab, a Harley rider, a hunter/sport shooter, a country swing dancer, a fisherman, a Vandal (University of Idaho’s mascot), a neighbor and am proud of all of these. But most of all, I’m proud to say that I live my life the way I want to even after having been diagnosed with SS (Sjögren’s Syndrome) 12 years ago. When something challenges me, my thought is "bring it on!" I’ll find a way to meet and, and perhaps, even beat you in a positive way.

So how do you do this when you hurt unbearably some days, wonder when nasty little “occurrences” of a myriad of new symptoms will ever cease, and are just plain tired of SS’s poop? I don’t know how you do it, but here is how I do.

Richard and Mitchell Bliss 3

First of all, I acknowledge that “today is the healthiest I’ll ever be”. Now that is a mental attitude that I must adopt because it is TRUE! However, with that said, how can I make the symptoms and my attitude the best?

I’ve decided that I need to be positive about my disease or I’ll never feel good physically or emotionally. I give myself a 20 minute window to be “pissy” (on the occasion that I have those feelings) about my hurts, issues, lack of energy, lost ability to mentally associate things, lack of full mobility, etc. I don’t like being around folks who are always negative and grouchy, so why would I want to be one of those? So that’s it, I start thinking about the things and people I really enjoy and appreciate, then my time is up! Most importantly, I think “why would I want to waste even a half a day of my life?” The answer is simple, I don’t and I won’t. There are way too few left at this age and if I were younger, I’d still feel that way.

Exercise is a VERY important part of my life. All literature regarding chronic illnesses and/or aging illustrates this point with an explanation of how it helps us immensely. So how do I get around the pain, etc.? I set my alarm for 5:15am three days a week and go to the local YMCA to do a workout in the pool that works on my entire body. The workout is 50 minutes long. Doing exercises in a pool is a lot easier on the joints and muscles. Plus, I treat my aches to 10 minutes in the Jacuzzi when I finish. I really dislike getting up that early most mornings along with the discomfort, okay- pain, but it's not about my likes, it's about my body’s needs and my future. I also do a workout at home 2-3 days a week in between the pool visits. I stretch, use lighter weights, elastic bands and the floor. I do all this not because it feels “good,” but because I know that it helps my body and because I can control my mind, at least in that regard- where it goes some days when I need it most, I have no idea.

I also believe in having fun and laughing. The world and my mind are my playground. I still do most things I did before all the various SS effects came storming my way about 8 years ago. Granted, I don’t do them the same way- I have modified them to fit my capabilities today. And I keep adjusting them year to year as my symptoms change (worsen). That means I still have the joy of participating in them, rather than being sour that I can’t “climb that hill anymore” (literally and metaphorically). I’ve helped my family and friends to understand a bit about these effects of SS so that they can enjoy time with me and vice versa.

I believe in teaching and inspiring as we go through life. And the way we live with SS is the “Professor” in all of us.

• Do we understand that we are not the only ones who suffer because of our condition?
• Do we see that our loved ones and friends no longer have us the way they were used to?

We are not as eager to get up and go or we simply cannot do some particular physical or mental activity anymore, or at least, not in the same manner. It is important that I recognize this so I can help them understand. This helps us create alternatives so we can still enjoy special times together in whatever we do. It is also very important to me that I be a positive person while we engage in these wonderful times together.

I have always had the attitude “Why Not Me?” I don’t think I’m special in any way that should exempt me from having a disease. Someone has to have them, if for statistical purposes only! I’ve shared with my sons that perhaps I was chosen because I am a very tough and strong willed person. Maybe I can handle it, or learn to, better than others. Whatever the reason, I have it and I’m okay with that.

A younger lady doctor, who was one of my most ardent advocates, convinced me to use pain medication when necessary, which was something I was quite opposed to. She was a saint for spending so much time with me regarding all my health issues including the pain. Being in extreme pain frequently is one of the toughest things we face. Oh how we cherish those days when the stars align in our favor and we have a day, or even a few, when we wonder if our SS is getting better. Sjögren’s doesn’t give us too much time to contemplate this crazy notion before it thumps us on the forehead and awakens us from that dream. I now use pain medication when I really need it and during times when I can feel symptoms coming on that would have put me down for a while. I have accepted that for me these meds are viable and can help me salvage more quality time. And I love having time just like everyone else!

It is important for me to be active in the things I like and enjoy. This gives me a chance to use and try to preserve what’s left of my mind and memory. Teaching and supporting others are two of those. I volunteer with organizations and the SSF that allow me to do so. It is very good for my mental attitude to be engaged in activities that can help others. I truly enjoy being a part of these. So I guess it is somewhat selfish too. And selfish is okay with me, we have to acknowledge that we all have special “things” we must do for ourselves. Sometimes they may seem simple to others, but just sitting or lying down a couple times a day is difficult for us to do. Why? Well for me it is related to my upbringing and age. We just went all day until bedtime because there was always something that needed to be done and you didn’t take a break until it was accomplished.

Having SS means we need to change the rules that fit us prior to that time. We need to give ourselves permission to do the things that can assist us. In addition to taking real breaks, I try to see my massage therapist as often as I can afford it. I believe massage is one of the most beneficial treatments for my body, mind and soul. Although I’m not certain how I know this since I usually fall asleep between the more painful spots!

George Strait, the country singer (I’m a Westerner, so I like country music) has a song entitled: “Here For A Good Time.” It speaks very closely to my way of living my life.

I’m not gonna lay around and whine and moan
Because somebody done done me wrong
Don't think for a minute that I'm gonna sit around
And sing some old sad song
I believe it's half full not a half empty glass
Every day I wake up knowing it could be my last
I ain't here for a long time
I'm here for a good time
So bring on the sunshine
To hell with the red wine
Pour me some moonshine
When I'm gone put it in stone
He left nothing behind
I ain't here for a long time
I'm here for a good time
Folks are always dreamin' bout what they'd like to do
But I like to do just what I like
I'll take the chance, dance the dance
It might be wrong but then again it might be right
There's no way of knowing what tomorrow brings
Life's too short to waste it
I say bring on anything.
I ain't here for a long time
I'm here for a good time
So bring on the sunshine
To hell with the red wine
Pour me some moonshine
When I'm gone put it in stone
He left nothing behind
I ain't here for a long time
I'm here for a good time
I ain't here for a long time
I'm here for a good time

Maybe they will put on my stone: “He had Sjögren’s and he left nothing behind.” Yep, I’m a Sjogrenite and so much more. I'm proud of the fact that it will never beat me!

Meridian, Idaho

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Topics: Depression, Sjogren's, coping with sjogren's, Advocacy, Men with Sjogren's

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