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

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SSF Launches 5- Year Breakthrough Goal!

 

After months of behind the scenes planning, the Sjögren’s Syndrome Foundation proudly announced the new 5- year breakthrough goal in the January issue of The Moisture Seekers. Our goal:

 “To shorten the time to diagnose Sjögren’s by 50% in 5 years!”

With an aggressive timeline of goals to accomplish ahead, we have created this blog to invite you to be a part of this journey with us.

We want to keep you informed of the progress we make, the hurdles we meet and how we overcome them on our way to shorting the time of diagnosis by 2012. Most importantly, we will let you know ways where you and your community can help! We will also be posting general support information for patients and their families, including updates about new resources, educational programs, coping information from physicians and much more.

As many of you know, the average time from the onset of symptoms to a diagnosis is over 5 years and we all agree that this is too long!  It will take an army to achieve our goal, but just imagine if we all band together to create a change.

Creating a future where physicians can start helping patients earlier, improve their quality of life and provide them with proper management and treatment guidelines. Imagine a future where Sjögren’s is taken more seriously by the medical community and general public, helping all patients.

 To find out more about our 5 year breakthrough goal, read the three main action items below:

  1. Increasing public awareness
    Increasing awareness among the general public is not new to the SSF; however, with our new breakthrough goal, we will be focusing on more targeted communications, building relationships with the media and utilizing our Awareness Ambassadors (volunteers who help the SSF distribute awareness materials in their communities) to distribute educational information.

  2. Increasing involvement from our friends and partners
    Increasing involvement from our friends and partners is going to be critical for us to achieve this breakthrough goal.  We need to partner with our various stakeholders (pharmaceutical partners, corporate partners and friends/family) to help us spread the word about Sjögren’s.  We will be asking them all to step up and help us fundraise as well as raise awareness.  With their help, we will be making a concerted effort at media outreach, healthcare professional awareness and education as well as increasing our resources for patients.  “Every partner and friend can assist in some way, and we will be calling upon everyone to step up and help us,” said Steven Taylor.

  3. Increasing education and awareness among healthcare professionals
    Increasing education and awareness among healthcare professionals is something that current patients know is urgently needed.  Trying to get physicians and dentists to understand Sjögren’s is a major challenge, and the SSF is determined to focus on this very problem.  By increasing our visibility at professional conferences, by speaking at professional associations and by visiting one-on-one with physicians – we plan to start to change the face of Sjögren’s in the medical community.  “We are determined to have Sjögren’s at the top of their mind when they hear a patient complaining of our hallmark symptoms of dry mouth, dry eye, fatigue or joint pain,” said Lynn Petruzzi, SSF Board Chairperson.

 

con·quer (Verb)

 

Overcome and take control of (a place or people) by use of military force.

Successfully overcome (a problem or weakness).

 

Together, we can conquer Sjögren’s!

click-here-to-learn-about-becoming-an-aw

Comments

Congratulations to the SSF on a great launch of our new Breakthrough Goal! Together we can make this happen!
Posted @ Tuesday, January 24, 2012 10:16 AM by Mary McNeil
I have conquer Sjogren;s Symdrome and I am also in 
remission from NH Lymphoma !
Posted @ Tuesday, January 24, 2012 12:11 PM by Susan Morasch
Congratulations to the SSF on all the work they do and for the launch of this wonderful goal!
Posted @ Tuesday, January 24, 2012 2:52 PM by Jennifer Schaeffer
think making doctors aware of SSF is so important. I have been in the ER so many times and both doctors and nurses know nothing about the situation. They just know I,m in a lot of pain and my stomachs is moderated. Only one Doctor has really stepped up to help me and knows what SSF is. Things its sad that the doctors refuse to hive me anything for pain or to keep me comfortable. Mine effects my major organs and causes much difficulty with pain. So awareness in the medical profession is very important. They only hear of SSF, but do no research, Sad!
Posted @ Thursday, January 26, 2012 8:48 AM by Deana
Sad to say but I have many people in my life who do not understand nor can they understand the issues complicating my life with Sjogrens. I have constant fatigue, dry mouth, loss of taste, dry eyes, and lots of joint pain. The joint pain has caused me to gain weight since I can not handle being on my feet too long. Awareness is needed very badly in the lower Rio Grande Valley McAllen, TEXAS area so that people like are not looked at as being lazy or uninterested in joining activites or lacking enthusiasm.
Posted @ Thursday, February 02, 2012 1:37 PM by EG
I too feel all alone ! I have tried to find a support group or start one, but haven't had any luck ! People ( even Dr.'s ) they just for some reason ' Don't get it ' ! Even with my family and friends, I just have to pretend around them that I have everything under control. The malaise and fatigue alone can be overwhelming ! It's not like we have to do anything either ! Malaise, Mental and Physical Fatigue lurks around every corner for us ! How long it will last each time, we do not know ! I begin to have anxiety when it's time for bed. I know I will lay there endlessly just feeling ill with pain pulsating throughout my whole body. Every morning I wake up just as scared .. another day to face and get through .. in a world all alone !
Posted @ Thursday, February 02, 2012 5:51 PM by Cynthia Harshbarger aka Stevie Boots
Thanks for the reply post about feeling so lost and out of place with all that we go through with Sjogren's. I often have to say that I have Lupus only because people can identify to that but that just makes me feel angrier cause I have to lie.  
 
I think the worst feeling in the world is when I look in the mirror and see the weight gain on me and know that at one point of my life I was very active and exercised regularly without any pain.  
 
I know all about living in a congested world feeling completely isolated and alone.  
Posted @ Thursday, February 02, 2012 9:19 PM by eg
I've just had one of my worse bouts with sjogrens. It took me almost 15 years to get diagnosed only to find out that there is no cure. In the meantime most of my family and friends have come to believe that I am sick in the head. I feel extremely isolated and would love to find a support group in my area, which is Palm Harbor/Clearwater Florida.  
Can anyone help?
Posted @ Friday, February 10, 2012 7:20 PM by Rebecca
Hi...to Palm/Harbor/Clearwater Florida...Ms Rebecca..I so totally know what it feels like to have family and friends think that we are "sick in the head"...geez ...sad. I just had a horrible bout this weekend with lots of joint pain, extreme dry mouth, red hot face..almost looked like I had a rash but did not, and extreme fatigue. I was so exhausted and it almost felt like I had taken a sleeping pill but had not. I was in so much pain and yet friends and family thought I was being lazy. I also have no connection to a support group where I live in McAllen, TX. I wish you luck in finding a support group. 
If anything at least we have this blog to comment about and know that we are not alone in this dreaded disease! 
Posted @ Friday, February 10, 2012 8:23 PM by dm
This is a rather small goal. 50% in 5 years? So 5 years of education should only reduce the diagnosis time to 2.5 years? How about 1 year or less? How about no more than 6 months? 
For a 5 year goal we should be able to reduce diagnosis time by 1 year, each year, over a 5 year time period. 
How hard are you pushing education in medical and nursing schools? If you start reaching the students who will be entering the field the diagnosis time will be greatly reduced in the future. Medical school and nursing school students are entering clinical settings every day. Even if a seasoned physician or nurse isn't familiar with the disease students entering the field should be able to recognize the symptoms and educate the seasoned professionals.
Posted @ Sunday, February 12, 2012 7:53 AM by Angil Tarach-Ritchey
i'm so happy to read about the experiences of other sufferers like me. A lot of people look forward to getting into bed for some rest, i almost dread it as i'm sometimes in so much pain and wake 3-4times during the night either from my dry, parched mouth or gritty eyes or pain in my joints or all of the above. At work, the pain just wears me down from trying to keep my eyes/mouth moist from using the computer/speaking on the phones. Unfortunately, people wonder why i'm always tired and looking worn out and i cant begin to explain!!!
Posted @ Friday, February 17, 2012 2:28 PM by A A A
I ddn't realize that I was the only one who had a hard time making my family understand. And I feel like my husband thinks where did all the weight come from !! OMG, You're right the doctors don't know what it is really like. I wish I could find one that actually had the pain & I bet he would prescribe pain meds. for me then. I could actually not hurt & get some exercise & get some of the weight off. I am walking on a treadmil a little at a time. That's all I can do, I can't walk up & down the street, the wind drys my mouth & esp. my eyes.Thanks for listening !!
Posted @ Wednesday, February 22, 2012 11:31 PM by Elaine
Hang in there....hope you are having a good day today. 
 
Posted @ Tuesday, February 28, 2012 2:35 PM by Lyn
I'm so happy to have found this site. I already feel less alone. I have just been dx and information is hard to find. Because I have other issuses I'm trying to figure out which ack/pain belongs to which medical problem. Can't wait to hear more fron all of you. 
 
Posted @ Tuesday, February 28, 2012 4:19 PM by cindy
I feel alot better since I found my naturalpathic rheumatologist. If anyone is interested in going to a dr. who is in San Diego,Ca. I will give his name: Dr.Alexander Schichman in Del Mar.
Posted @ Tuesday, February 28, 2012 11:50 PM by Karen Schutzer
Thank you for creating this blog. 
 
it helps to know there are others 
 
who have the same day to day things to deal with. I feel like I would just as soon be over it all!
Posted @ Wednesday, February 29, 2012 6:02 AM by Ollie
Has anyone experienced a problem with a tendon in the upper arm and shoulder stiffness? 
 
Has anyone experienced a problem with their ulnar nerve and the elbow and numbness? 
 
Posted @ Wednesday, February 29, 2012 12:01 PM by jennie
Well,. I am so pleased to meet all of you!!! I too struggle from hour to minuit on a daily basis to try to maintain some level of normalsy in this world called Sjogrens. I live in the Boston area; in March I have an appointment at the Sjogrens' Center at Johns Hopkins Hospital in Baltimore. I'll keep you posted
Posted @ Wednesday, February 29, 2012 2:00 PM by Catharine Claiborne
I apoligize for the above typos.
Posted @ Wednesday, February 29, 2012 2:05 PM by Catharine Claiborne
Jennie, It constantly feels like I have a real tight tournequet on my upper left arm. The pain radiates down my arm and into my four fingers and my thumb is completely numb. I take Lyrica and it helps a lot, except I can't take it during the day, because my head is too fuzzy. It helps me sleep, too, which is a real blessing. You may want to try it. I don't know about you guys, but I'm constantly wondering if all these weird aches and pains are related to Sjogrens or if I should seek help elsewhere. How would we ever know? Feeling helpless and shamed for mentioning pain to others, especially family. They feel I should "suck it up, everyone has pain". Seems like I'm always "tap dancing" for other people. It makes me angry at them, but I always wind up being angry with myself, instead.
Posted @ Wednesday, February 29, 2012 2:06 PM by Rebecca
Rebecca, thank you. I'm taking a nsaid for pain and inflammation. It helps and I sleep pretty well most of the time now. The numbness I have in my left arm is from my elbow to my ring and pinky finger. It has stayed the same for over a year and I'm happy it hasn't gotten any worse. I'm not sure if it is related to Sjogren's or not. It bothers me to not know what is causing a problem. My family mostly ignores me when I complain about aches and pains. I think Sjogrens is hard to deal with because they, like us can't see it. I don't think I would understand it if I hadn't experienced it. I just keep trying to learn more about it and find the best ways for me to deal with all of the different things associated with it. It is an ongoing process. It is becoming the new normal for me.
Posted @ Wednesday, February 29, 2012 6:42 PM by Jennie
Has anyone had incidents of fainting during bouts of severe fatigue? I have experienced this twice now and just wondered if anyone else had. What about strokes? I would love your feedback. 
Posted @ Saturday, March 03, 2012 7:04 PM by Lynn Newman
Hello, I am new to this. I just had an ANA drawn and it was positive for sjogrens. I have not seen a rheumatologist yet and I have not officially been diagnosed but my symptoms have been progressing for the last 8-9 years. I have not been able to get a physician to listen to or address my symptoms until I began seeing a Nurse Practitioner. It has taken me 4 physicians and about 8 years to get the ANA drawn. I started with intermittent lower leg muscle spasms, tremors of my hands, decreased and blurred vision, dizziness, mental fog, choking on dry food, hoarseness, frequent bronchitis, and severe fatique. My husband thought I was just complaining for about the first 5-6 years of this illnes, and this past summer I had a severe bought with vertigo that lasted about 6 weeks. In October I began to have such severe lower leg pain, spasms, and stiffness that I was unable to walk my dogs or perform my nursing duties on the job. I have progressively gotten worse and even after going to physical therapy for 6 weeks I am still unable to walk up or down stairs, walk down inclines, shop, drive myself home after work, or perform housecleaning duties. The pain has become so that I now have periods that while walking my leg goes out from under me with no warning. I am now taking baclofen twice a day and celebryx twice a day. This does help with the pain however, I have no quality of life. Heating pads and ice packs are my life savers and my days off work are spent performing one hour chores with rest consuming my day. Although I have not officially been diagnosed with this syndrome, after reading your comments, it certainly sounds as if this is what I have. If I am diagnoses with this syndrome, I vow to invest my professional nursing career in educating other professionals about this debilitating illness.
Posted @ Saturday, March 03, 2012 9:30 PM by Jean
Hi Lynn! I'm sorry to hear about your fainting, etc. I too have issues with fainting. I've learned to avoid getting up quickly or changing the bed sheets. Just raising my arms to throw the sheet up and onto the bed, would make me faint. My doctors say it's "postural hypotension", but much like you, the doctors seem to feel threatened by ailments that they cannot quickly remedy or write an Rx for. Once that fails, they usually say things like "did you or do you have an abusive household", like the very real physical symptoms are in my head. Very frustrating, when you know they're real and wouldn't wish the pain or isolation on anyone.  
 
 
 
On another note....I used to have very hairy arms. Now,I am hairless on my arms and nearly hairless on my legs. Has anyone else experienced this?
Posted @ Sunday, March 04, 2012 10:49 AM by Rebecca
i was diagnosed a year ago my presenting symptoms were fatigue dry mouth and dry eyes and vasculitis. i feel like i can handle all the dryness but the fatigue is the worst.  
any suggestions?
Posted @ Sunday, March 04, 2012 11:30 AM by carrie
Catherine I am eager to hear about how you do at the Sjogrens' Center at Johns Hopkins Hospital in Baltimore. Just hearing that there IS a Sjogrens Center, anywhere, gives me hope. I've been to the Cleveland Clinic, in Cleveland and the Mayo Clinic, in Jacksonville Florida and both had no clue. Mayo said it was "in my head" and sent me to see a biofeedback expert for the chronic pain and esophageal dysmotility (vomiting). The biofeedback Psychologist has helped me use biofeedback techniques to deal with the pain and psychological issues caused by Sjogrens. He always believed it was NOT in my head and continues to give me support, that I couldn't get elsewhere. 
 
 
 
Carrie....I've had Sjogrens for 15 years and I cannot tell you how to deal with the fatique, except that it's important not to beat yourself up about it and remember to treat yourself with gentle kindness, as you would treat others. Our society places a lot of shame on people who are "lazy", so it's important not to allow that shame to permeate your thoughts about yourself. I look at all the walks/runs that are sponsored by the Sjogrens Foundation and I marvel at how they are able to take these activities on. Today, it's very windy outside and there is a lot of pollen in the air, so I can't leave the house because I can easily get Congunctivitus in my eyes and sores in my nose, so the idea that others are out and enjoying the day, Sjogrens or not, is very alien to me. 
 
 
 
Anybody have any tips on this Fatique Thing?
Posted @ Sunday, March 04, 2012 1:27 PM by Rebecca
I have not found support groups in Vermont. I was diagnosed in July of 2010. Fatigue, gritty eyes, and joint pain are difficult.  
I was diagnosed with hypothyroid at 18 and have raynaud's. I have tear duct plugs, use restasis three times a day, insert lacriserts daily and use eye drops as needed. I am taking plaquenil also. I have had hair loss and thinning.  
I would like to hear more about the Naturalpathic  
Rheumatologist and Johns Hopkins Sjogren's Center. ML
Posted @ Sunday, March 04, 2012 3:42 PM by ML
ML and Rebecca it was great to get your e-mails.ML, I also struggle with multiple eye issues. I have had the punctual plugs they were helpful for awhile and then stopped their effectiveness. Now I use the autogolous serum tears 4+ times aday. They are very effective----heeeey!!! If anyone is interested I'll give the info. I know how difficult it is manuevering the health care industry, I am an RN and I think it helps sometimes.The rejection and the disbelief by doctors can be demoralising and it seems to be an unsurmountable journey at times but we have to be our own advocates.JOhn Hopkins has a Sjogren's Center With all the specific specialist we need (opthamologists, neurologists, rheumatologists, ect).The website is hopkinsbayview.org.
Posted @ Monday, March 05, 2012 11:41 AM by Catharine
Rebecca, I also have the esophogeal issues. I take Nexium, it helps most of the time but just like the other symptoms nothing helps. I find the SSF newsletter a great resource; that's where I heard about the Sjogren's Center.(hopkinsbayview.org) I hope today is a good day. About fatigue, my husband who is still not 100% onboard gave me some advice "some days are 80% and some days are 10% be good to yourself". I have to remind myself to do that,because sometimes I just feel like a failure. THANK YOU to you and everyone on this blog it's a Godsend.
Posted @ Monday, March 05, 2012 12:08 PM by Catharine
Catharine, 
Thank you. I am an LPN and I would like info on autologous serum tears. ML
Posted @ Tuesday, March 06, 2012 9:16 AM by ML
Karen, 
Does a Naturalpathic Rheumatologist give diet info to lesson sjogren's symptoms? ML
Posted @ Tuesday, March 06, 2012 9:20 AM by ML
Good morning everyone. Hi ML, I originaly heard about the autogolous serum tears through my opthamologist.I believe they have been mentioned in the SSF newsletter. The only place in North America is at Mass Eye and Ear Hospital in Boston. The process is that multiple vials of your own blood ia drawn, the red cells are separated from the serum. Once the serum is separated it is mixed with sterile saline solution- 80%/20% mixture and placed in small containers (probably 10 or more)for you to use as eye drops.The drops need to be kept frozen until needed then kept refridgerated. Usually may have several months supply, depending on the amount of serum obtained and the frequency of use. There really isn't any side effect because it is your own blood. One downfall is that insurance doesn't cover them because they are still considered experimental, even though they have been used over a decade @ Mass Eye and Ear. The cost is $150 each time you need a new batch. The effect isn't immediate but the consistence and coldness of the tears is comforting.After several months my eyes are less red, sore and less gritty. The pharmacist in charge is Judy (617) 573-3299). You could probably Google them for more info. The hx of their research is interesting. It started in Asia over 40 years ago. Hope this helps. I hope you and all of you guys take care today---now we are not alone.
Posted @ Tuesday, March 06, 2012 11:02 AM by Catharine
Hi, it is me again, Catharine.I'm not sure the SSF intended this site to be as supporting as it is but I want to take advantage of this opportunity.If anyone would like to e-mail me to share info re SS OR to share helpfull things that may have helped with the symptoms,PLEASE post a message on this site with your e-mail in the appropriate place at the bottom of this site and we can share with each other. I find myself checking this site frequently to hear about anyone's experiences with life with SS. I want to thank the SSF for opening this site and thank you for all the foundation does to keep us abreast with information. Your work is so important and I truly appreciate it. Catharine Claiborne
Posted @ Tuesday, March 06, 2012 12:39 PM by Catharine
I was diagnosed a year ago with sjogrens and raynauds. I was dianosed with chronic bronchitis three years ago, and GERD several years ago. I have had a nissin fundoplication surgery twice. i'm doing much better as far as relux issues, however, I still have GI problems. I have trouble with digestion,and take pancreatic enzymes, and welchol in order to keep food from going right through me. After reading and researching sjogrens, it makes me wonder if all of these health issues are related to sjogrens. I really thought that dry eyes, dry mouth, joint pain and fatigue, were the symtoms of sjogrens. I didn't realize that it can affect your organs. i also have a cyst on my pancreas which I have no idea what the cause is.I have been taking plaquenil for about nine months now.it seems to be helping with some of the symptoms. Reading all of your posts, makes me feel like I'm not crazy. There really are people like me out there. Does anyone know of support groups in Jacksonville Fl.?
Posted @ Tuesday, March 13, 2012 3:04 PM by Laura
Laura, 
I agree with you about the related health issues. I also have more than one. I would like a support group in Vermont. ML
Posted @ Tuesday, March 13, 2012 5:04 PM by ML
Hi everyone, 
I am also an R.N. from McAllen Texas. I was diagnosed with Sjogrens 3 months ago, but have suffered with it for years. I was told that I had Lupus and just kept getting worse until I had to be put on oxygen and was hospitalized due to poor oxygenation. I finally decided to go to a Rheumatologist and a Pulmonologist and a Cardiologist in Houston Texas. There is a large medical center there and they were able to work together to diagnose me. Like all of you I felt like I was going crazy. It seemed like all I did was complain of pain and being tired. My Rheumatologist put me on Plaquenil and cymbalta. She also gave me cortisone injections in my hips. That helped alot! I have also gained a lot of weight, but now I have let go of all of the junk food and drink only water or green tea. I have lost 15 pounds without exercising. I also use hot baths in the morning before I get up and ice packs on the joints that have the pain. I am going to start water aerobics at an indoor pool at a local High School. It is a heated pool and I believe that water will be easy on my joints. I am watching what I eat. I have eliminated foods such as chocolate, cokes, and as much processed foods as possible. I don't know what caused this, but I am listening to my body and am trying to see what irritates it. I can say "for sure" stress is a killer! I pray alot, give my worries to God to handle and stay away from the people that cause me stress. My family and friends know that I am serious about not "needing" the drama. It affects me worse than anything. I take xanax when it is some stress that I absolutely cannot avoid. There is a book called "Eat right for your bloodtype" that a friend of mine recommended she is a Holistic Doctor and has been able to help a lot of people with Lupus, RA and other diseases. I drink water non stop. My Physician instructed me to rinse my mouth out with Biotene rinse "not the spray" 3-4 times a day and I drink a lot of water. I hope this has helped. I have just started my journey, but hopefully we can all help each other. Thank God I at least now know what I am dealing with. That is the first step. Please feel free to e-mail me if you would like too. 
Take Care and God Bless you all. 
Shirl
Posted @ Wednesday, March 14, 2012 6:00 AM by Shirl
Hello everyone, I recently found a website called Sjogren,s World (just google it). It is an incredable resourse, I mean like so intense with all kinds of info r/t SS. It is an international non-profit organization; there are forum rooms where people blog about their needs, experiences, anything about how SS affects their lives. People are frequent flyers, so you really get to know people. It is annonomous, everyone uses a user name. I have chatted with people from UK Canada, Australia and Japan and of course the USA. There is no charge. I have read really indepth research studies r/t neuro sxs of SS (17pages) and articles from the worlds' SS MDs.I hope I have encouraged you guys to use this site to help you live with this devastating disease. Also closer to home, ther is SS group that meets in Boston @ Tufts University Hospital several times a year. Dr Lynn Epstein runs mini seminars r/t SS issues. I hope this helps, Be good to yourselves, Catharine
Posted @ Thursday, March 15, 2012 11:54 AM by Catharine
hello shirl, 
 
I too felt like all I ever did is complain of pain and being tired. I still do have pain and I'm tired,but not nearly like I was. 
 
I am glad to hear that cortizone shots help. my Rheumotologist had suggested that I try them if I cant take the pain in the joint in my hand. I wasn't sure if I was willing to try it, but maybe I will . :-)I totally agree with you. Stress is such a killer. I too, told my family that I cant deal with drama at all. I truly feel that life is too short.I believe that there is power in prayer,and God gives much peace. 
 
i just recieved a card from a very precious friend of mine, and i would like to share the scripture that was in it. Cast all your anxiety on Him because He cares for you. 1 Peter 5:7
Posted @ Thursday, March 15, 2012 9:06 PM by Laura
Catherine 
 
 
 
I went more than 15 years before I was diagnosed. All specialists contributed it to stress, postmentopausal, and age. My eyes were absolutely horrible and I saw a "corneal specialist" almost 5 months getting steriod drops. I went to Wilmer eye institute and was diagnosed almost immediately. 
 
I have been seeing the doctors as John Hopkins for 7 years and they look at the whole picture of the effects of Sjogren's. I now see my doctors at the Sjogren's Syndrome Clinic at Hopkins. There is also a clinic at Temple in Philadelphia, Pa. With my care from Hopkins, I have had only one flare. When diagnosed, all three of my nervous systems was affected 
 
and I had no feeling from above my ankle down to end of my toes - no pain when stuck my needles, no vibration feelings, and temperature. 
 
I got all that back after six months on Plaqunil. 
 
 
 
You are making the best decision in your life. 
 
My suggestion to others - go to a teaching hospital because they have to be on top of the latest treatments. 
 
 
 
Kathy
Posted @ Friday, March 16, 2012 12:38 PM by Kathy Gordon
Kathy, Thank you for responding to my entry. It sounds like I am finally on the right path (but still not completly on board---- it's been a loooong journey). But I know this is the first SS Center I have been evaluated at, I guess I am somewhat optimistic. Thanks I'll keep you posted. Be good to yourselves, Catharine
Posted @ Friday, March 16, 2012 6:20 PM by Catharine
This is my 2nd bout with sjogren's syndrome. However it is much more involved this time with skin, orifices, digestive tract involved. I am still reading everything I can get my hands on or find on the web but it seems the doctors in MS are not up to date. Does anyone know a doctor in MS who might be qualified to deal with this increasingly involved 'attack' I absolutely will not it mess up my two days with my brother and his wife, my daughter and a son and wife, for the three days that they- the CA relatives- are here. Lord have mercy, Christ have mercy. No sleep for now it seems. Will hit it again and hold still and prayerful, waiting for whatever to pass. Indeed, it will. 
 
Any input is appreciated.
Posted @ Tuesday, April 03, 2012 3:13 AM by Melinda
I was diagnosed in 2001 and confirmed in 2003. I have found pilocarpine/salagen and punctal occlusions of great help. I coat my exposed skin 2-4 times a day with Eucerin. I set by an ultrasonic humidifier a couple hours a day and sleep with one next to the bed. I have inserted 1.5 inch pvc piping and curve joiners into the Wicks cold ultrasonic humidifiers so the moisture goes directly at me or over my pillow. I put towels on the bedding and change them during the night to avoid skin issues from the moisture (We are moisture seekers, but too much on the skin can irritate it). I wear N-95 masks in the house on dry winter days when not near a humidifier. I put moist bounty towel pieces in the mask when flying, if needed. I keep a portable ultrasonic humidifier with me when out and a battery to operate it. I wear an N-95 mask in theaters when the lights go out. I even coat my scalp a little with Eucerin on dry days. I use Biotene gel on dry nights so I can sleep (worst nights one or two a month). I keep water by the bedside. I drink Snapple diet peach green tea and it seems to help a little or at least is a nice treat. I eat 8-10 prunes a day with 1.5 cups of Fiber One 57% and soak it in water for 10-15 minutes before eating (I fight dry constipation but found if I used milk it added another 200 calories). I eat low fat Activia every other day to aid digestion--helps. Try to find ways to trap moisture around you. By using ultrasonic humidifiers I can create a 5 square foot area around me with 60-95% humidity and the rest of the house stays close to normal humidity (no mold issues, yet refreshing, healing, renewal time for me). I experimented with lip balms as the sunscreens iritate my lips now--Nivea A Kiss of Moisture Essential Lip Care works for me. It is in a deep blue tube and does not have sunscreen. My doctors helped some, but web searches helped the most. Hope this information helps you.
Posted @ Thursday, April 12, 2012 12:38 AM by John
Wow, AM by John, that is a lot of good information. Thank you for sharing, I will make a list of the items you mentioned. 
 
 
 
Not to be negative, but.....last week my husband and I flew to Chicago for a double funeral for his brother and sister. As you can imagine, the arrangements (air, hotel & auto rental) were extremely stressful, but I felt like I was handling things ok. By the time we went through parking in long term parking, checking in and going through security, my joints were screaming with pain, not to mention the fatique I was experiencing. When we checked in at the gate, we told the American Airlines attendant that we were requesting pre-boarding, because I am disabled. The representative laughed in our faces. We repeatedly reinforced the issue, but our plea was met with more laughing. 
 
 
 
I wish there was some way to make people realize that if you say you are disabled, you are disabled regardless of whether it is physically apparent. I don't understand why people dig their heels in and lack empathy for those around them. What would it have costed the attendent to help. I just don't get it. 
 
 
 
I've emailed American Airlines customer relations and have heard nothing. Next, I'm considering reporting the agent to the Americans with Disabilities. I realize that this is even MORE stressful, but I'm tired of being a victim of small-minded people like this. 
 
 
 
Does anyone have any ideas for convincing authority figures that even though we may not be missing a limb?  
 
 
 
Whew....thanks for listening.
Posted @ Saturday, April 14, 2012 9:51 AM by Rebecca
I just went to the rheumatologist for my six month check up. He knows less about Sjogren's than I do! I referred to the new Sjogren's Handbook which he was totally unaware of. I know that some of us get very cranky because of this disease but I really have a difficult time understanding why a doctor that is supposed to specialize in this illness knows so little - and worse, we are asked to purchase the book for them!
Posted @ Tuesday, April 17, 2012 1:29 PM by Joy
Hello, my name is JoAnne Bell-Hill and I was diagnosed with Sjogren's Syndrome October of 2006. I became very ill in August of 2005 after returning from visiting my sister in Iowa. Prior to this, I was having a lot of trouble with my lower back and numbness down my legs. The pain was so bad that I could hardly make it to the bath room and riding in the car was the worst pain ever! 
 
Well, it took me to be seen at least four hospitals before I found out what was wrong with me. Yes, I have the dry mouth, dry eyes and a lot of numbness, severe pain throughout my entire body, also I have swollen joints in between my fingers as swelling in both legs. I also have Fybromialgia which causes me a lot of nerve pain along with the Reynaud's Disease I have in my hands and feet. (please excuse my spelling) 
 
The over the counter items that I have to use is the tear eye drops, a heating pad and I have to keep some gum, mints or cough drops so that I won't have dry mouth all the time. I've tried the product Biotene Spray, toothpaste and the gum. 
 
I would like to take this opportunity to thank you for allowing patients like myself to express our views and experiences while dealing with this very debilitating disease. I feel that this information should be shared all around the world because it is a rare disease that you don't hear about on a daily basis.
Posted @ Thursday, April 19, 2012 5:51 PM by JoAnne
My name is Shelley. I was diagnosed with sjogrens in 1985 by a lip biopsy. Back then there was not much known about sjogrens, so the doctor was more knowledgable than most. Unfortunately, I moved out of state and he retired since then and I find that so many doctors don't know enough about sjogrens. I have had to have 3 surgeries to remove multiple stones that I have developed in my salivary ducts and canals. Some the size of a lemon seed. I also was diagnosed with R.A. 5 years ago so I experience all the symptoms that go along with that.Plaquenil 400 mg.daily helps with my fatique, and my doctor keeps me on 2.5mg of prednisone daily. I've developed lactose intolerance with this and IBS, so I take otc pills for that.I don't know what to do to avoid the reflux and choking symptoms. I juice daily with carrots (5), 1/4 beet, apples for sweetness, and it does seem to help. The biotene products help, along with vitamins D,B,C,E and fish oils.Thanks for info posted that I haven't tried yet but will. I know how frustrating it is dealing with doctors who don't know much. I found out more info through this site than any Rheumatologist that I've ever seen. Thanks everyone and prayers for all.
Posted @ Tuesday, April 24, 2012 1:51 AM by Shelley
I would like to know if anyone lives in Redding, California, I would like to start a support group 
 
here. Margie
Posted @ Tuesday, April 24, 2012 5:51 PM by Margie Ludwig
I'm just now trying to get SS diagnosed, I also have 
NH-Lymphoma, but I have been doing research and diet is important in both. Friends get active and responsible in eating healthy food. A humidifier does great wonders for sleeping and skin. Learn to help yourself through it. Louise
Posted @ Wednesday, May 02, 2012 10:39 AM by Louise J. Mishler
Hi I have sojgrens sydrome skin lupus and found the site "sojgrens sydrome.org very helpful in explaining the problems and i had graves 31 years ago and it is all related to auto ammune. try the site
Posted @ Sunday, May 13, 2012 6:08 PM by delores
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