Subscribe via E-mail

Your email:

Donate

Help support the SSF's 5-Year Breakthrough Goal initiatives by donating.

Donate to Research

Follow Me

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

Current Articles | RSS Feed RSS Feed

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

 

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!

-Richard 
Meridian, Idaho

 

Comments

Thank you for posting this email. It helps to read how another person with Sjogrens handles it..especially acknowledging the challenge without going overboard with self pity. My diagnosis came so long ago that I forget it is sjogren's causing my distress. When I read someone else describing their life, I realize my minor discomforts are sjogrens...duh! Thanks.
Posted @ Friday, August 09, 2013 12:07 PM by Nancy Kelleher
OMG - that is so well said and exactly how I am handling my SS diagnosis 4 months ago! I exercise daily, lost 24 lbs so far, staying away from processed foods a little more, and learning to admit I can't 'do it all' like I used to. I'm OK with slowing down just a bit when I have to, but I am determined, like you, to not let this SS get me down. :)
Posted @ Friday, August 09, 2013 12:09 PM by Krista
A very admirable attitude toward our "crazy painful & dibilitating illness"--proud of you. 
 
I also find the most challenging thing is, after being a workaholic, having to take breaks.
Posted @ Friday, August 09, 2013 12:14 PM by Linda
I enjoyed Richard's comments as it is the only way of life for those who suffer with sjogren's. I am 76 and run my own business and always busy with volunteer work etc. Somehow you can forget on certain days your pain when you get really involved with a detailed project. 
 
I have many allergies and I am restricted in what I can eat. However, in the long run it works out OK. Mostly fresh fruit, vegetables and certain meats. I very seldom use process food in my diet. 
 
 
Jane
Posted @ Friday, August 09, 2013 12:15 PM by Jane Ross
Great attitude! It took me years before I decided I was going to be happy and enjoy life no matter what! Mine has progressed to where I don't get out much, my vision has gotten worse, but am never bored, or feel sorry for myself.I encourage and try to help others with chronic illnesses and am so blessed.I adopted rescue dogs and consider my life wonderful. I have some energy in the mornings and have started doing Hip Hop Abs.lol Never give up.
Posted @ Friday, August 09, 2013 12:28 PM by Sissy
Fantastic story/attitude! I'm working on having an attitude as positive as yours...there's still days I struggle. Any advice food-wise you have found that works? Best of luck to you...
Posted @ Friday, August 09, 2013 12:32 PM by Jenn Butler
thank you so much!
Posted @ Friday, August 09, 2013 12:42 PM by Penelope Anderson
Very positive article. I needed this today. Having a VERY bad pain/fatigue week. Thanks, Richard!
Posted @ Friday, August 09, 2013 12:43 PM by Dawn Younce
Great attitude, from an Idaho Vandal 
Posted @ Friday, August 09, 2013 1:19 PM by Beverly Erickson
Good advice, Richard 
 
So many of us with Sjogrens are women, so it's nice to hear your point of view, as well. 
 
I have difficulties pacing myself with family and friends. When I'm with them, I want to soak up every bit of them, without knowing that it's merely my adrenaline that's carrying me through. It's not until I colapse that I realize I've gone too far. 
 
I wish there was some kind of warning bell that would tell me I've had enough.
Posted @ Friday, August 09, 2013 1:33 PM by Rebecca
THANKS FOR DEMONSTRATING THE AWESOME ATTITUDE THAT IS ESSENTIAL TO QUALITY OF HEALTH AND OUR LIFE WITH SJOGRENS SYNDROME! My pain can be a good thing because it serves as my "Reminder" that I can't do it all and I have to respect the disease and slow down or I'm headed for the much dreaded flare. My motto, "I have Sjogrens but it doesn't have me!"
Posted @ Friday, August 09, 2013 1:46 PM by Kristi Gazzo
Richard, I love your posting. I'm working on it, but I'm not there yet.
Posted @ Friday, August 09, 2013 2:03 PM by Dodi Palmer
Attitude affects everything! :)
Posted @ Friday, August 09, 2013 2:11 PM by Pat
Hi, 
Someone questioned my diet. I am very allergic to many environment allergies and foods but my biggest problem is with wheat, milk, soy, and iodine so be careful of vitamins and foods that contain any item that you may have allergy reaction. I had take omega 3 that contained iodine. I had terrible problems walking but after figuring out my problem I use a plant based omega 3. It made a 100% difference. I definitely believe that many times when I indulge in products I am allergic too I find the sjogren's really acts up. My nephew is studying medicine and he always tells me 
"Tell me what your eating and I'll tell you wants wrong with you". I think he may be right.
Posted @ Friday, August 09, 2013 2:55 PM by jane ross
Thank you Richard, I too Have SS. I was diagnosed [finally] after more than 20 years of doctor after doc. Just the peace of mind knowing something was truly wrong has helped me cope so much better. 
May God bless you.
Posted @ Friday, August 09, 2013 3:34 PM by Dorla A Seeger
OMG! This is so good. It was put here today just for me I know! I have a goal now!
Posted @ Friday, August 09, 2013 3:38 PM by Nelda
What a refreshing outlook - I only hope I an be as positive as you are. I was diagnosed this past spring and am still trying to figure out "new normal". I know for me that if we have an out of town trip or a busy few days planned, I'd better slow down and then be prepared for the backlash. Hearing from others who are living with much worse symptoms than me is an encouragement to me to grab life and run with it!! I pray for those of you with worse symptoms or any symptoms of the strange disease.
Posted @ Friday, August 09, 2013 3:51 PM by Roxanna
I have SS, i just wish there was some one i could talk to my family really doent know just how i feel. There are my up and down days.Ihave been on so many medicine and none seem to work for me.Ihave watch the Dr's shown on tv and it a disease no one talks about.
Posted @ Friday, August 09, 2013 3:52 PM by mildred
I really can appreciate your comments and yes I do think the same as you however my story is different. 
Everyone, dr's, nurses, friends, they all say, "how are you so happy when you are so sick?"  
Mine is my faith is God, prayer and a fight to the finish for my guys attitude.  
But also like you, I did everything I was told, exercised, watched and listened to comedy, tried to never feel sorry for myself or at least stop it, as soon as I realized the pity party, hardly complained and still watched my life disappear!!! I STILL have a good attitude, am told "if you told us you were this sick we would have come over", but usually I never did until over 2 1/2 years ago after fighting this for about 14 yrs. Went from an athlete, vibrant, loving life, married, working woman, to single mom (2 weeks after diagnosed), to not being able to leave my house because I can longer walk more than several feet (20??)due to the joint pain, or the bouts of pneumonia which happen so often now, they just overlap.  
I was blessed with a new tailored fitting powerchair (yes chair because my knees no longer bend to fit a scooter, and I've been so ill, sometimes almost unable to breath, I haven't been a able to use it much SO FAR. 
So please don't put out there that Sjoren's syndrome and everything that can be associated with it, heart, joints, choking, ibs, bladder, smell, taste, numbness, unable to speak words, etc., is because I'm not using mind over matter, or feeling sorry for myself, it's NOT. Ask anyone that comes in contact with me. My sister died at 38 from one of the complications of this disease when its systemic, and it wasn't from depression, or not using mind over matter.  
I'm really glad your techniques work for you, but come and talk to me when you've gone from a healthy athlete( despite the sjogren's diagnosis and all of the above that CAN COME WITH IT0, hits you and on your very BEST DAY, WITH YOUR BEST ATTITUDE, gets you with your walker, to your powerchair so you can get outside, with none of your friends left and your now teenaged guys, who are straight A students, work, great in the community, trying to hold a brave face as they walk along you trying to convince you, this is great being in a powerchair(Which I thank all those who made that possible)! 
Sincerely, 
From my bed after bandaging my legs because of my Sjorgren's "flaring" causing a horrible rash from ankle to knee on both legs since NOV '12, yet I am typing this still with both my hands, feeling like every joint in them is dislocated! Yes I have ALL MY DOCTORS, and now a specialized TEAM of rehab, etc., people trying to stop this ravaging of my body, inside and out. 
Jo-Ann age 51 (sister died at 38)
Posted @ Friday, August 09, 2013 6:32 PM by Jo-Ann
Richard, your post is inspiring to me as I was just diagnosed with SS 6 weeks ago. My head says 'take a walk' but my body doesn't cooperate. I am going to my 1st SS support group meeting in a couple weeks and hope to understand this better. I am a very happy positive person, but the pain challenges my personality. I am also workaholic but I can't keep the momentum going. I hope to find that happy medium soon. God Bless you for sharing your story!
Posted @ Friday, August 09, 2013 6:56 PM by Sue Ellen
Jo-Ann I'm so sorry that you have to live in this awful pain. I too was recently diagnose with SS still not sure if its primary or secondary. My Rheum. will not give me a straight answer. I have severe chest pain, joint pain, and ear problems (ear pressure in one ear without pain)and the Rheum. tells me that my ear has nothing to do with sjogrens. I go to different Doctors and they tell me my sjogrens is not related to any of my other medical problems but cannot give me an answer for my medical problems. This is all new to me. I'm still learning about this disease all thru the internet. Thank God for the internet because I cannot count on the Doctors here in Chicago. So much pain and not an answer if sjogrens is causing all of my other medical problems. God be with us.
Posted @ Friday, August 09, 2013 7:18 PM by Debbie
Debbie..I too am in the Chicago area. If you are interested in a support group, check out the SSF website. There are a few in our area. I'm attending one on 8/23 in Glen Ellyn. I echo everything you are saying. God Bless.
Posted @ Friday, August 09, 2013 8:07 PM by Sue Ellen
What is your preferred pain medication? thanks
Posted @ Friday, August 09, 2013 10:22 PM by RJ
checking out support groups in Ontario, Canada 
Posted @ Saturday, August 10, 2013 12:32 AM by John Thomas
Thanks, Joann for a REAL sharing about SS for some suffers. It is NOT just joint pain, dry mouth, and dry eyes. 
For some it is 24/7 peripheral nerve PAIN, and such tiredness that just keeping the never ending drs appt's and affording the endless OTC treatments and meds is where it is really at. Having massage treatments and time to swim in a pool is not a reality. As with life, some are dealt bad deck of cards and got the short end of the stick, those are the exact words said to me from a physician I saw recently. I have SS, lupus, celiac, Raynaud's. I suffered a very debilating stroke @ 52 only to turn a corner and have these autoimmune problems. So, Richard from Idaho, may God continue to bless you with such a positive outlook and thanks for sharing your story. P.S. I would like to know what pain medicine has workes for you. T.Y. 
Posted @ Saturday, August 10, 2013 1:08 AM by Anne Marie
Thank you so much for lifting my spirits! I too try to stay positive knowing that a good attitude is half the battle. Enjoy the good days and know that the tough days will pass. All the SS sufferers are in my thoughts and prayers.
Posted @ Saturday, August 10, 2013 6:37 AM by Dale
Hi Sue Ellen: 
 
Do you have a good primary Doctor? 
What about a Rheum.
Posted @ Saturday, August 10, 2013 12:14 PM by Debbie
Hi Sue Ellen: 
 
Sue do you have a good primary Doctor that helps you thru this sjogrens and do you have a Rheum. I do not have a primary Doctor and I have a Rheum that I'm not happy with. What Hospital do you use? I'm asking because I need to find a primary and Rheum. to help me not tell me that I look good. I am not on any meds for my sjogrens I think I should be something because I think the sjogrens is progressing. Thanks. e-mail: lexusdeb6403@att.net
Posted @ Saturday, August 10, 2013 12:32 PM by Debbie
 
Thank you for your voiceabout Sjogrens Syndrome. I too have it and am the Idaho telephone contact person for the National Shogrens Syndrome Foundation.I have had it since childhood but was diagnoised when I was 39 yrs old.I have raised three daughters to adulthood. Have had many of the problems that you all stated. I found out that the pets we had a cat and dog were the cause of some of my symptoms. When they died stress levels began to subside.when children graduated, married and left home I began to take care of myself.now I'm better.I have good days and bad ones. I have wonderful doctors who take real good care of me.Issues with husband in the beginning.I live in Nort Idaho 20mins from the University Of Idaho.Am still married to said husband.
Posted @ Saturday, August 10, 2013 3:33 PM by Patty Glbert
Just corrected last name spelling from just posted comment.
Posted @ Saturday, August 10, 2013 3:38 PM by Patty Gilbert
I so wish I had a support group here! The diagnosis a few years ago meant nothing because I only had the dryness but now everything hurts and there are days I do absolutely nothing! That is the part I hate! Still have a tendency to overdo and I always pay! Try to balance my life as best I can! Diagnosed with Lupus also which was a real blow! Carry on! That is my motto!
Posted @ Saturday, August 10, 2013 4:38 PM by Theresa
Sue Ellen - I am on Plaquenil- and have had good luck with it. Otherwise, I've been advised that its treating symptoms and recognizing when you need to slow down- I absolutely would recommend finding a good internist/rheumotologist. It makes all the difference in the world. Good luck to you.
Posted @ Saturday, August 10, 2013 5:41 PM by Jennifer
Theresa - Where are you? Hopefully you can find support thru online forums. May not be the same, but hopefully it will provide some measure of comfort. I too was diagnosed with Lupus 8 yrs ago. It was basically in remission/dormant until last Fall. I knew something was up, and went to a fab internist. He diagnosed me first time out w/Sjogrens. I didn't realize how rare that is; but I've found that now that I can tell the difference between what my symptoms are; I'm able to manage it better. I'm a classic Type A- so I fight this constant battle to not overdue it...but am happy with where I am now. I hope you too can find that healthy spot!
Posted @ Saturday, August 10, 2013 5:44 PM by Jennifer
Richard, you are an inspiration. After years of dealing with the symptoms, and experiencing an increase for a couple of months, my rheumatologist told me the symptoms were due to Sjogren's. When I read a list of symptoms, everything made sense. She increased my dosage of Plaquenil, and I am hopeful I will see results soon. Thank you for your words of wisdom and encouragement.
Posted @ Saturday, August 10, 2013 9:48 PM by Barbara
Thank you Richard for starting the support group in the Boise Valley. 
You are a true inspiration to the whole group. You are doing such a wonderful job. I wish you great days without pain & discomfort. 
You are an inspiration to us all Th
Posted @ Saturday, August 10, 2013 11:10 PM by Gre'
When I first read the title I thought to myself (I too suffer from Sjogren's) how can one love liviing with Sjogren's? Then I read your story. Sjogrens has hit me systemically affecting my heart heart kidneys and lungs. I am trying so hard to accept my new life and reading your story gave me enlightenment that yes I can have a life. But I still cant say I love it just yet. It is a journey and I pray daily and thank God for every day I wake up. Yolanda
Posted @ Sunday, August 11, 2013 4:04 AM by Yolanda
Thank you.
Posted @ Sunday, August 11, 2013 4:32 AM by Lale
Hi Debbie- 
 
I will email you today and maybe we can chat about the issues we have. My primary and Rheum are from DuPage Medical Group. Also, the support meeting is Saturday 8/24, not 8/23 like I first stated.
Posted @ Sunday, August 11, 2013 9:34 AM by Sue Ellen
Hi Jennifer - My Rhem just started me on Plaquenil 4 weeks ago. I'm also on Lyrica for all the pain I've been having, but I really don't like the way I feel. My Rhem tells me I have something else in addition to the Sjogren's, but still trying to figure it out. At times, my skin feels like it is on fire. Wondering if anyone else has this sort of sensation. All the best to you - God Bless. Sue Ellen
Posted @ Sunday, August 11, 2013 9:41 AM by Sue Ellen
You are an awesome inspiration! Thank you for your words of wisdom...I will definitely need to try harder to follow your positive attitude! I was doing great until I got hit with Piriformis Syndrome which causes Sciatic issues, hip bursitis, and torn rotator cuff tendons - both shoulders...all at the same time. Then add in a whacked out thyroid and finally depression, and I'm finally starting to feel better. I needed to read this - thank you again!
Posted @ Sunday, August 11, 2013 5:31 PM by Patty O
Richard, I was very impressed with your E-Mail, first that you are a man with SS and secondly with your attitude-it is truly amazing. You are a very upbeat person; but what worries me about it is, that other people that do not feel as you do, including me that do hot have such an upbeat outlook may feel inferior about themselves, or how we are approaching our disease or diseases. With SS I also have Peripheral nerve pain in my legs, feet arms & hands and when the pain hits my arms and hands sometimes I cannot even lift my hand up to brush my teeth or my hair--the pain is so bad--so then for sure I am not upbeat at all. But when I read your piece which I have done several times I feel myself changing and getting into a better mood and trying to get up and to do things---so all in all I think writing it we should thank you or I do thank you--it certainly helps me in how I feel with my pain .
Posted @ Monday, August 12, 2013 12:08 AM by Judy K.
Thanks Richard for your story. It is up lifting for us all. I'm still not quite there myself, though I try very hard. My body just doesn't want to go even when I push it to. So it's very hard right now. Having problems with stomach issues and muscle, tiredness, a lot of pain etc. I still can't get my family to understand any of my disease at all. They think since I look ok I must be ok. I'm having a very hard time with that. Just can't seem to talk to them and put things in the right way so they will understand. It truly has brought me down and it's very hurtful as a mother. I have grandchildren whom I adore and want to spend as much time as I can with them. I just don't want to loose them over my health. My husband is the only one that understands. He gets so upset with our son for not being more supportive and daughter In-Law also. It does make everything worse. Thanks again for your story it was great. If anyone has any help on how to talk to family and having them understand and support you in time of need it sure would be appreciated. Thanks everyone for listening to me. God Bless Us All who have to go through such a misunderstood and not very known horrible disease.
Posted @ Tuesday, August 13, 2013 12:31 PM by Debbie
I was diagnosed 13 yrs ago and I'm only 43 right now.. i recently ran my first FULL marathon - 26.2 miles and it was the most amazing feeling and I did it for me... because there are many days I feel like I can't cope with these symptoms, but i too.. refused to let it define who I am.. I am choosing who i want to be and staying positive and feeding all areas of life with that positive energy.. physical, mental, spiritual and emotional - i'm so blessed to be of aboriginal ancestry that this has been my guiding grace. There was a time during my difficult symptoms that i couldn't run, open doors, tie my shoes... we all know these awful days.. it's so hard to believe that I was there and that someday I may be back there... but not today - ONE DAY AT A TIME :) miigwetch/ thank you - god bless
Posted @ Tuesday, August 13, 2013 8:56 PM by Stephanie
I spent a great of time reading how you individually handle your SS through diet, meds, exercise, & positive thinking...and this is just a few things I noted!!! I hope in time through diet and exercise I can get my system BACK into some sort of order!! 
 
My diagnosis of SS came in July 2008, the same year my Mother had 3 brain aneurysms & a massive stroke which left her in need of 24/7 nursing care and my world upside down. Earlier that April I had seizure which landed me in the hospital for three days and the next eight months re-gaining my balance, fighting depression, plus a massive weight gain. In Dec 2010, my life took another turn - another fight for my...this one to keep my lungs open due to my asthma and severe allergies, both which were reeking havoc on me and unable to take prednisone since i am allergic to it doesn't help my situation.  
 
I have many food allergies along with drug allergies so trying to determine which meds /foods are safe has been challenging to say the least. I have been eating a healthily diet since Dec 2010, and have dropped 160 lbs - and have recently started walking 4 miles 3x per week when my hips and fatigue allow. 
 
I've been experiencing issues with my toes bleeding, bruising, turning black & blue & losing both pinky toenails. I am now experiencing a on & off rash which itches profusely, burns, runs across my neck, behind my ears, inside my ears, across my face, upper chest as well as hives off and on. I can't use Chamomile to calm, I'm allergic to it.p, Benadryl only does so much.... any suggestions !?!? 
 
 
Posted @ Friday, August 16, 2013 9:24 PM by Jeanette
Richard, I wish I could attend your support group. Unfortunately, I too do not have a good support group here in Buffalo, NY. 
I have a question for all the SS bloggers. Has any one had to go thru radiation therapy? Sjogrens alone makes me extremely fatigued. I'm wondering how the radiation treatments for a tumor in my ear will affect me. Any answers? 
God Bless all you good people.
Posted @ Saturday, August 17, 2013 10:11 AM by Cathie G.
I wish I could help everyone of you and wish I could develop a more positive attitude. It is getting harder and harder. I have really worsened in th elast year and now am having problems with Hearing, vision, dryness, neuropathy, headaches, can't tolerat meds used for treatment. I feel as though I am alienated rom everyone around me with the hearing and vision issues. Has anyone gone to the Jerome Green Sjogrens' Clinic in Baltimore at Johns Hopkins? Did they offer any hope or help?? I am going to look into it. Also, a lady posted on here some time back that she was improving with all natural treatments. I'd like very much to ge tin touch with her. any help would be appreciated.
Posted @ Monday, August 19, 2013 1:52 PM by Barb
good article Richard. I am also a male with this disease. Diagnosed 10/2009. I have been off work for over a year now due to Sjogren's. I have small fiber neuropathy in feet, calves, buttocks, hands, left side of face and head. This is in addition to the dry eyes and mouth, fatigue, and joint pain.  
 
What are your main issues? I am on so many meds for this. I am spacey and confused at times which is due to the combination of the meds, pain, depression, and the disease itself. Going to Mayo clinic in October for 2nd opinions and treatment plan.
Posted @ Monday, August 26, 2013 9:54 PM by Joe B.
Hello it is Theresa again from Aug. 10 post! I live in san Antonio Texas for one who asked about no support group!
Posted @ Monday, August 26, 2013 10:40 PM by Theresa Shelton
Hi Debbie, So sorry it has taken me so long to get back on here. Debbie I was just wanting the other side of a great attitude and a athlete's journey that wasn't always the same as Richard's, who is so blessed to be able to do what he does, good for you! Thanks Deb Firstly, RICHARD, after reading my response it came off as negative, when in reality it is the loss of what you still are able to do, that causes me the most pain. The day after I wrote in I was rushed by ambulance, with no radial pulses and unable to breathe. 10 days later and a wonderful lung specialist, we are trying to find out what is wrong with my lungs. Supposedly pneumonia since Dec/12..along with everything else. Unlike Richard my family has chosen after loosing one daughter to this, to not support us at all, which completely breaks me and my guys' hearts. Pulmonary function test showed my lungs at best are at 45 - 50% and of course my response was "well at least I don't have cancer!"  
To those that talk about confusion etc., with the meds we get put on, I stopped five of them outright, just so sick of the results and I do have to say I feel "more alive" than I have. I still have to take one, instead of three pain meds, heart med, one prednizone which I'm hoping to get off soon but have not been able to travel to my Rhuematolist, and my plaquenil. Within a couple of hours literally of going off these medications out of desperation and trying not to end up a statistic by accidentally overdosing on pain meds, all i could think of was to go off everything that was vital! In under 3 hours I was standing in my bathroom, which I have to furniture walk to lol, and realized the only bad pain I had was in my joints??? I've stayed off the 5 meds, but breathing is very hard and just don't understand why when I'm a fighter and type A personality and look at the glass half full type of girl, I can't get back to even close to exercise, let alone run. Richard, please give any advice you have. I fought meds forever, but now it seems like this body is just falling apart! I was told by a social worker that I have to get a social life besides the hospital or a doctors office, or of course the dentist for my breaking teeth lol......just sounds so lovely, not sure why I'm still single lol.....really despite the humour I am truly resolved to finding an answer so I too can live my life. diagnosed 2003 in Seattle and now live after my husband left because I couldn't go back to work as a paralegal, moved home to Vancouver Island in B.C., Canada. Not so many support groups here, infact none here and the rheumatologist that I see is about an hour and a half and I just can't sit that long, but will find someway if I have too.  
Any info., especially Richard, please contact. Thanks, Jo-Ann Going to win this battle! p.s. hope this is this makes sense as I don't have the brain power lol to read it over....u just have to laugh sometimes!
Posted @ Monday, August 26, 2013 11:08 PM by Jo-Ann
What a gift you have! Your writing is wonderful! I just got confirmation of Sjogren's this month. Over the years I have learned, after battling extreme migraines and various other symptoms that have popped up, to appreciate the "good days". I have had my first major bout with a "flare"...and realize how things can go. So I will try my best to appreciate the good days, and slow down when my body tells me it needs to rest. I have already started making changes in my life to accomodate the "good" and "bad" days. And I am greatful to have a "name" to what I am dealing with. I am also glad I can check in with others to gain a better understanding of Sjogrens. Thanks again for your eleoquent words! 
Posted @ Tuesday, August 27, 2013 2:06 PM by Denise
Hi Everyone....this is Richard. First, thank you all for expressing yourselves. Friendship and expression are very important in dealing with SS. I think we all feel a kinship with each other as we read all the comments. I wish I had answers but I really don't.  
However, I do have some suggestions and questions of my own. 
If you don't have a support group in your area.....START ONE!! You don't have to be an expert or even close....I'm not. Contact Kathy at the SSF and see what it takes to start a support group in your area. She is a wonderful lady and extremely supportive and helpful. I have truly enjoyed our group and the information available to us from the SSF and from local health care providers. 
The next suggestion is to consider reading the book "A Body Out Of Balance". I think it is a must read for anyone with a chronic illness. The SSF has it for sale or ask your library to get it in. I think it very succinctly illustrates the coping/emotional stages and some means of helping deal with them. 
I am like many of us in that I really dislike all the meds I take, but I believe they allow me to do the things I do and lead a very decent life, considering ... therefore.....I take them. That said I am trying to learn more about foods and diet. . I eat pretty well with a lot of fruits and veggies cooked fresh and of course, salmon and other fish and wild game I harvest, but I still like chips and ice cream in moderation....at least I think so :) Anyway I'd be happy to see more blogs here regarding information/experience some of you have with different diets.  
I was like the lady who said she couldn't get out of a chair, etc. about 8 years ago and that is when I chose to use Prednisone...and still do and dislike it very much....but I also love the fact that I can get up now and do these things. It almost cost me my vision from a steroid induced detached retina.....a very little know potential side effect from Prednisone. I was fortunate to find a University hospital within a days driving distance who’s Retinal Specialist used experimental procedures and, very fortunately for me, helped stop it. 
Some asked about the Mayo clinic and Johns Hopkins and radiation. I wish I could tell you more but we had a lady in our meetings early on who attended Johns Hopkins and then was treated with radiation, but I no longer have contact with her, so maybe the folks there could answer that question. 
The knowledge bank of information has truly come a long way in the past 12 years or so that I've been involved with SS. There are some wonderful clinics around the country that are so much more knowledgeable and better integrated with all the medical disciplines our disease encompasses. If you have good enough insurance, I would highly suggest a full and detailed evaluation by one of them. I feel that there are so many manifestations of this disease that our local primaries and rheumatologist just can't be experts or fully understanding of it all. Even though it is understandable, it is unfortunate for all of us. 
If you have a clinic close by or just a Rheumatologist who specializes in SS, I would definitely try to become their/his/her patient! 
The issue with family is a difficult one. We encourage family members at our meetings and generally have four or more in attendance. We suggest that if you have friends or family that don't understand your symptoms and the fact that you aren't 100% even though we "look good" (cracks me up sometimes when I hear it ... remember, I said my mind and the world are my playground)bring them to meetings or provide information from real folks with SS! Some of the literature out there has some suggestions in helping both us and them to deal with the changed "me". I truly think it is two way and that we need to understand some of their changes with the SS us. 
Didn't mean to make the reply this long...but here we are so I'll wrap it up. 
Thank you all for your thoughts and comments. Now, find something to have fun with today and laugh at something ...... it helps. Okay, I'm going to go play with my yellow lab...she always makes me smile! 
Best wishes to all and take good care.
Posted @ Tuesday, September 03, 2013 4:26 PM by Richard
Richard: 
 
I too have Sjogrens I think Diet has a lot to do with Sjogrens. I have Lactose, Celiac Fructose and Malabsorption. I had to removed all sugars from my diet. I do feel much better. I also think this diet keeps my inflammation under control. It's a very hard diet to stay on. I think these foods had something to do with me developing Sjogrens and so did all the mercury and other toxins in my body. I had these food intolerances for many years before the Doctors discovered them. I made an appointment to go to the John Hopkins Sjogrens Center. I am having a hard time finding Dr.'s here to help me. Thanks
Posted @ Wednesday, September 04, 2013 7:38 AM by Debbie Parker
Very inspirational posting, Richard. 
 
I'd had symptoms for many years, but finally diagnosed in 2008, along with Gastroparesis, Raynaud's and Lupus. My symptoms were stable for some time, but have recently flared something horrible. 
 
When flaring, it's easy to lose perspective, to get lazy and revert to poor eating habits. That's when, I've learned, it's most important to eat right and continue exercising. If nothing else, stretch your arms above your head, touch your toes and rotate your neck--just keep moving.Not only will it help you stay limber, it will release endorphins and help your mood/lift your spirits. 
 
Your positivity was inspiring, Richard. Keep posting!
Posted @ Monday, September 23, 2013 7:06 PM by Lana
Hi Richard, 
Like many others, I lived with symptoms of Sjogrens for years prior to being diagnosed; Before the diagnosis of Sjogrens, I was diagnosed with MS too and my neuro sent me to an eye specialist to check on my check my optic nerve which was fine. After a few hours this eye specialist told me that I had Sjogrens so bad I needed no further testing for it as I had adhesion's all over my corneas. I went back to the rheumatologist who repeatedly did blood work due to may symptoms I had for various rheumatic diseases, but I had no antibioties for anything. I ended up, over time, being diagnosed with about 10 different diseases, many autoimmune and some that were not. My purpose in sharing this is to share what was really wrong because I think that it may be more common than most physicians realize and a lot more prevalent than most people realized. My MS doc looked at my medical history and did some lab work, and it turns out that I had a primary immune deficiency. So many people with diseases such as Sjogrens have multiple diagnoses, and few doctor's seem to look at the whole picture. I hope by sharing this that it might help someone who may have the same thing. It's a lot more common than most people or doctor's realize.
Posted @ Saturday, November 09, 2013 9:30 PM by Lorraine
Hi Everyone, 
 
I have finally accepted that I have Sjogren's. I accepted this some time ago now. I use the Paleo Diet which is anti-inflammatory if done stricly, to help keep down inflammation in the body to help. I hope this will slow the progression of the disease. I thought it might help some of you who have more severe symptoms than I have so far. 
 
The Book I recommend you read is The Paleo Answer, by Loren Cordain, 2012. It is available on Amazon.com and in other book stores. He is a professor who proposes this hunter-gatherer diet and explains in scientific language why to avoid each food that is less desirable.  
 
I have been doing this diet for over 6 months, and a less strict version for over a year. I eat mostly organic, non-GMO fruits and vegetables, grass fed meats and wild caught fish, raw nuts, free range eggs and chickens not raised on corn or corn meal. I eat black pepper, and virgin olive oil and coconut oil for cooking. You can use walnutand avocado oils for salads or anything that stays cold. I eat fish oil supplements from "safe" sources, currently from Norway (about 1000 to 2000 mg/day, read the book, unless you eat fish like salmon that day), and vitamin D3 2000 IUs per day unless you get enough sunshine that day.  
 
Also, I try to drink lots of water, preferably filtered. Fiji is the best bottled water as it has a pH close to pH8 which is better for us. This is more alkaline and less acidic. All other bottled waters are acidic. Tap water is pH 7, neutral, which is good. Filter it and that helps to remove some of the chlorine that was put in it. Distilled water, may be fine also. Again, see what the book, The Paleo Answer, has to say. 
 
My blood test results have been pretty good on this diet without much exercise. I have started to throw in some walking the last two weeks, so that should improve things further. I hope this helps many people. It is anit-inflammatory. I have added a little salt recently to help increase my potassium levels as sodium and potassium seem to have a correlation that I studied about in college. Have not had time to investigate further, but my blood test results went up for potassium this month! Yeah!!! 
 
To do the real paleo thing, you get to avoid grains, grain substitutes, soy, dairy, soy lecithin (found in most chocolate), hormones and chemicals added to your food, food colorings, additives, GMO fruits and vegetables, corn, sugar, hot spices that cause leaky gut (which cause low-level inflammation in your body) including jalapeno, cayenne, paprika, hot sauce. No legumes, that means no peanuts as they are not tree nuts. Peas and beans are legumes; they are no-nos. They were not on my original list above. 
 
I hope this helps. I have herbal teas and water to drink. Green teas or black coffee are also good choices if you like them. 
 
I don't know if this will help, but I noticed that the paleo foundation and other medical sites recommended foods like oatmeal and milk and yougurt and sweet ice lollies. These are all inflammatory. If you want to take care of yourself, maybe you could freeze some real fruit in an ice cube tray and eat that. It would be healthier and cold and it could be pureed first. You can have cold apple sauce. No dairy and no grains. These are inflammatory and not helpful. The medics have not all got the science behind them and have not studied how the primitive societies did NOT have our health problems until they started eating our diets. They did not have cancers, diabetes, or autoimmune diseases that our doctors or scientists could detect! Really. I beg you to read the book before you make up your mind about what can help you as far as diet is concerned. 
 
My best wishes to you all. I have a sore head today and am off to see my neurologist now. I likely will be needing your support soon. I don't know how to handle this. Hugs.
Posted @ Tuesday, November 12, 2013 3:37 PM by Loretta Lanting
I am all for whatever helps, but sometimes what we try to improve our condition is worse than the Sjogren's itself! Also, when we are told that people didn't used to get diseases we have now, please remember that people used to die much younger than now, I.e., before old enough to get these diseases. 
Posted @ Tuesday, November 12, 2013 6:20 PM by Dodi Palmer
I am happy that the Paleo diet is working for you. However, I believe that these fad diets are a waste of time. I tried to go GF and anti-inflammatory diet for 6 months and I did not see any results. I saw a Gastroenterologist at the Mayo Clinic in October and she said that diets are a waste of time. This is alternative medicine. the Western doctors still are not on board. I say just eat healthy and do not go too overboard on the bad stuff. Who really wants to be told what they can or cannot eat? Eating then becomes no fun!!
Posted @ Tuesday, November 12, 2013 8:30 PM by Joe
I find it hard to believe a MAYO gastroenteritis told someone that GF diet is a waste of time. Dr. Joseph Murray at Mayo, in Rochester, Minnesota is a world renown expert who strongly advises GF diets for certain conditions. I myself have seen progress on GF and non-inflammatory diets with my sjogrens and celiac disease.
Posted @ Tuesday, November 12, 2013 9:27 PM by Rj
I saw Dr. Romero at the Mayo for abdominal pain. I asked her about GF diet and any other diets that would be helpful for my Sjogren's. She said GF is a fad and waste of time unless you have Celiac or are gluten sensitive. She said that people who can tolerate gluten should not be GF. I then asked her what about anti-inflammatory diet and she was not a big fan of this, the Paleo diet or any other diets. My rheumy here in Seattle told me that not many of his patients reap benefit from trying GF or the anti-inflammatory. Put it this way: if these diets truly did work for Sjogren's, all of our doctors would be telling us to go on them. I have heard of so many snake oil remedies: drink mangosteen juice,drink raw cow's milk, go on this diet, take these supplements, blah, blah, blah, blah...If it works for one person, great; but as a whole, Western Medicine does not believe in this and is not endorsing it.
Posted @ Wednesday, November 13, 2013 11:54 AM by Joe
My confidence in Western doctors was shaken when I read it takes the average SS patient 4.7 years to get diagnosed. Something like 7 years for celiac patients. My diagnosis was along these lines. And I am not alone. When you keep going to multiple doctors with specific documented symptoms and they can't tell you what's wrong. It is because they have not been trained. Sad that a doctor's learning stops the day they leave med school.
Posted @ Wednesday, November 13, 2013 9:36 PM by rj
Jo Ann: 
 
I am so sorry that you became sick like that. I hope you are doing a lot better. I was off of this post too for a long time. I will be going to John Hopkins on this coming Monday. I been having all sorts of problems. How are you doing? Are you back on your meds. Keep in contact with me. Take Care. Debbie
Posted @ Friday, November 15, 2013 4:05 PM by Debbie
great way to live life. no matter how hard im hurting im riding my horse and doing what I love to do. wish you well Richard and lets live karen
Posted @ Wednesday, January 22, 2014 12:45 PM by karen
Richard, What pain med do you use? thanks.
Posted @ Monday, March 31, 2014 7:24 PM by rj
Again thanks to everyone for chiming in here in an attempt to assist each other. to Karen: good for you, as I truly believe that for almost everyone, you will never be basically healthier than you are today....so don't let the way you feel stop you from enjoying life and doing things in a modified way to meet your current abilities! I am having some major surgery tomorrow and it is my goal to be back on my motorcycle by mid to late June.  
RJ: I use hydrocodone as I need it only. However, it does not work for my headaches which seem to be getting considerably worse and more frequent. If anyone has any thoughts on medication and/or treatments for really bad headaches, I'd appreciate your sharing that information. 
Summer is coming so keep exercising, thinking positively and laughing : - )
Posted @ Monday, March 31, 2014 10:46 PM by Richard
Richard, best of luck with your surgery tomorrow, I use oxycodone with acetaminophen for pain; maybe that would help more with your headaches. I also use a heat wrap around my neck for head and neck pain. The main thing I hear over and over again is meditation. I was doing some guided imagery for pain and it seemed to be helping. Haven't been able to do it for a while because I'm having problems with narcolepsy, of all things, and I just fall asleep. All the best to you. Your kind words have helped a lot of people.
Posted @ Tuesday, April 01, 2014 12:16 AM by Dodi
Enjoyed your article, Richard. Let me saw, though, your statement regarding exercise- that is not always the case. 
While exercise does have a lot of health benefits, there are some exception to this and believe me this exception is hard to live with. It is greatly misunderstood. I have a muscle disease as well as Sjogren's and several other autoimmune diseases. 
I have Myasthenia Gravis. Believe it or not, exercise can be very dangerous in this disease.  
Exercise is often contra indicated. I think it's easy for any of us to forget that in order to exercise or do anything physically, our muscles have to work properly. In order for our muscles to work properly, the nervous system has to function properly. This is a chemical process. In Myasthenia Gravis, it is actually a chemical imbalance. Therefor it is impossible to build endurance or make the muscles stronger. Although it is now possible to take a synthetic form of this chemical, it is only symptomatic treatment and the effectiveness of treatment varies from person to person and even in the same person. I think this is important to bring up because before I knew that I had this disease, I was judged by other people and I was critical of myself because I never seemed to be able to build endurance or get stronger from physical exercise of any kind. I hope that I can share that and it might someone else to not struggle with that as I did. Thanks again.
Posted @ Tuesday, April 01, 2014 1:18 AM by Beth
Jo, this is in respons to your post about diets. 
I do not have Celiac Disease let me first say. A gluten free diet, though, I would not call on of the fad diets. And there are a lot of them. Gluten is a kind of glue almost. It sticks to the insides and can cause a lot of problems. This is true whether a person has Celiac or not. I do not diet to lose weight. But I decided to see what a gf diet would be like. Actually I gradually cut out sugar, gluten and all preservatives and anything artificial. I did it slowly and once I had eliminated it all out of my diet, I felt like a different person. A lot of my symptoms of SS and other autoimmune diseases I have improved. My digestive problems completely cleared up. I had more energy than I have had in a long time. It was amazing. What worked best for me was juicing. This helped me to eat healthy, get my veggies and fruit in. I can't recommend it high enough. I started cheating and my symptoms returned. I plan to get back on as soon as my friend returns our juicer! I know a lot of doctors don't think diet really cures anything, but I can vouch for it, that gf dieting does. When you read about gluten it is easy to see why. Gluten sticks to our insides making digestion difficult. The gut is the main control center for fight bacteria, disease and a of our immunity is found there. when it gets out of balance it can through the whole rest of our immune system of balance. Hope this helps.
Posted @ Tuesday, April 01, 2014 1:41 AM by Beth
I can say going gluten free has help me as well as anti-sugar. It has helped tremendously with SS. However, I do have celiac as well. The Key is to do it for at least 3-4 months and here's a tip: there is no such thing as going partially gluten free. It is all or nothing.  
And gluten is hidden in everything, so be careful.
Posted @ Tuesday, April 01, 2014 7:28 AM by rj
Is headaches and neck pain common with SS? Because I am getting them more and more frequently.
Posted @ Tuesday, April 01, 2014 7:32 AM by rj
Richard, I hope your surgery went well.. I live in Caldwell and was just diagnosed in Feb. I would love to Join your support group ..got room for one more ? :)
Posted @ Sunday, April 06, 2014 11:19 PM by Robin Fisher
Hi Robin, 
We sure have room for you in the support group. 
Our meetings are every other month in Meridian. 
It is usually posted in the press tribune and on sjogrens website. 
You want more info you may give me a call. I live close to you. 
Gre' Visser
Posted @ Monday, April 07, 2014 11:26 AM by Gre'
Thanks Richard.... I am going on vacation tomorrow... I will contact u when I return .
Posted @ Saturday, April 19, 2014 7:00 PM by Robin Fisher
Post Comment
Name
 *
Email
 *
Website (optional)
Comment
 *

Allowed tags: <a> link, <b> bold, <i> italics