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Sjogren's Acronym

 

describe the imageThis Sjögren's acronym was sent to the Foundation by a member's husband. He wrote this for his wife during Sjögren's awareness month in April and has allowed us to share it.

S- So dry – both my mouth and my eyes
j- Just feel miserable, much of the time
ö- Only others with Sjögren’s really understand what it’s like
g- Goggles, eye drops, gels, mints – I must’ve tried them all
r- Restasis – one magic medicine that can help
e- Every once in a while, a good day!
n- Never gonna’ give up, no matter how I feel
'
s- So tired, so sore, but tomorrow might be better!

Having positive support can be very important when living with a chronic illness. The Foundation encourages you to join a local support group, become a member of the Foundation or comment on blog posts and connect with others here.

 Is there something you'd like to share with the Foundation- email us at tms@sjogrens.org!

Comments

The Sjogren's acronym is so true!  
Thank You. 
 
ML in Vermont
Posted @ Wednesday, June 12, 2013 8:47 AM by ML in Vermont
What a wonderful man! I have a great husband too. I don't know how I'd get through this without him. Thank you for sharing this.
Posted @ Wednesday, June 12, 2013 9:58 AM by Barbara Spors
Just wish there was a support group in Nebraska:-(
Posted @ Wednesday, June 12, 2013 10:27 AM by Hollie in Nebraska
Thanks for sharing this! It is so true! I have a wonderful man too and I also do not know how I have to get through this awful illness whithout him.........Alma siereveld, the netherlands
Posted @ Wednesday, June 12, 2013 11:06 AM by Alma Siereveld
This is so true that it would make a good Sjogren's Syndrome Foundation T-shirt.
Posted @ Wednesday, June 12, 2013 11:22 AM by Kathy
While I would hate to see the occasional good day ignored, another great medication,(for dry mouth) Evoxac, is a great one for "E" too!
Posted @ Wednesday, June 12, 2013 12:05 PM by Terri Barnhart
Thanks so much for sharing this-it is so important to have good support from family. I do from my husband, children all live out of the city-country....My doctor is another story-I was diagnosed with Sjogrens 1 year ago and have not been back to my Rheumatologist since then--went back to him today-he looked at one thing I have on my arm--told me it was from thin skin-blood under my skin--didn't say anything else--"not even asking me how I am"--and told me "Good luck"--that is the kind of medicine we have here in Canada. I will speak to my GP on Friday and try to get into another one--hopefully--so I am quite dependent on other peoples help--the foundation here--DVD's--books, etc.... 
Thanks to all of you ............
Posted @ Wednesday, June 12, 2013 12:06 PM by Judy K.
This is so true and it feels really good to have someone who can understand regardless of where it is, thanks for everyone who has helped someone else.
Posted @ Wednesday, June 12, 2013 12:40 PM by Teresa
How true. My husband is just great. Wish we had a support group in northern New Jersey.
Posted @ Wednesday, June 12, 2013 12:57 PM by elaine d.
all of the above is so true,this illness is so debilitating and needs more recognition from the benefits department in the uk.
Posted @ Wednesday, June 12, 2013 12:59 PM by elizabeth beetlestone
My husband does not believe what he can not see, so keeps telling me to suck it up. If more information was made public concerning the pain and weakness involved, maybe he and others would believe it is real.
Posted @ Wednesday, June 12, 2013 1:06 PM by Linda Butts
I truly understand I have it
Posted @ Wednesday, June 12, 2013 3:01 PM by Yolanda
This message is for Judy K. I have a rheumatologist that I think the world of. She doesn't believe in too much medication. Her approach is holistic medicine. She studied under Dr. Weil.  
 
My suggestion to you is to ditch that worthless doctor and find someone else.  
 
I'm on Plaquenile and it appears to work well. My Sjogern's has been neurological. Dry mouth sometimes!  
 
Good luck to you!
Posted @ Wednesday, June 12, 2013 4:43 PM by Connie
Also in Canada, I was finally diagnosed after 5 years of dry eyes and developing dry mouth too. The Rheumatologist was great at the outset, and as for the eyes I had a useless Opthamologist ( seriously told me it was "age" at 38 yrs old) who only handed out over the counter saline drops. My Optometriat is a SAINT and although the Restasis didn't work, the FML steroids have healed all the lesions and things are better... This acronym is bang on! Thanks for posting it.
Posted @ Wednesday, June 12, 2013 4:58 PM by Christy
I love it! Thank you :)
Posted @ Wednesday, June 12, 2013 6:08 PM by Sandy
I too, have a wonderful man, very supportive. Just tell me how to make my upper plate stay without 3 or 4 apps of glue (gel) per day. Can't leave in at night due to sore gums & bone changes
Posted @ Wednesday, June 12, 2013 6:26 PM by Charlene Krown
Love the acronym, thankfully I as well have a great supportive husband who will step in and take over when I can't . For me what has helped with the dry mouth is clonazapam, taken at night it helps with sleep as well.
Posted @ Wednesday, June 12, 2013 9:25 PM by Mary
To Linda Butts 
Join the Sjogren's Syndrome Foundation in Bethedsa. Subscribe to the Moisture Seekers because they informative and explains how Sjogren's affects various areas of the body. My husband is very supportive and he goes in with me at every visit. The Sjogren's Syndrome (Fourth Edition) would be get for you and your family. Information that should be shared with your family and your real friends.
Posted @ Thursday, June 13, 2013 12:12 PM by Kathy Gordon
Thank you so much..This acronym is so true.
Posted @ Thursday, June 13, 2013 12:14 PM by Lale
You girls are all so helpful--I think that is so important to all of us-I am not going back to my Rheummie for sure-will have to try and hook-up with another one. Right now my eyes are leaking something awful-I think it is the allergies that are picking up here-if it doesn't let up I will have to get other drops or something from the doctor-giving it one more day to see. Another thing that I find so helpful is chewing sugarless gum--I never was a gum chewer all my life--but I got sick of carrying water everywhere I went so someone suggested the gum--it works miracles-I cannot talk without water or gum in my mouth I get so dry-so if I am out or on the phone I have one or the other near by. My lips don't stick to my teeth that way. 
 
Another good book to read is "You don't look sick"--Joy H. Selak; it helped me a lot. No one believes how I feel ever--so I think if any of you want help in that area you would like this one--.. 
Posted @ Thursday, June 13, 2013 12:51 PM by Judy K.
This is great. I too have a wonderful and supportive husband and kids. Even though it is difficult on them because they don't know how to help me, they are there to help and support me. I couldn't go through this without them. 
Posted @ Thursday, June 13, 2013 7:10 PM by Soni
Well, I see I am the talkative one, but that isn't so unusual-I had chicken pot pie tonight for dinner--a very small one-it was so good, but I have terrible heart burn now-I can only eat very bland food-like chicken-roasted or Bar-B-Q--or hamburgers-etc...no seasoning--or I don't digest it---can't chew it---DO any of you have ideas of what you eat that is not fattening--and is sort of bland--I have run out of ideas? Cereal, eggs-that type of thing is the easiest for me--but they aren't too exciting! Thanks--
Posted @ Thursday, June 13, 2013 7:37 PM by Judy K.
Unfortunately, from the comments above and my own experience, my loved ones also think I should suck it up. They say that EVERYONE has aches and pains. They would like me to suffer in silence. This only adds to the depression and isolation I feel, because I feel like I must "tap dance" and act like everything is "just fine". They seem to think our symptoms happen in a bubble or a vacuum and cannot begin to understand that it affects EVERYTHING in my life. 
 
I would love to start a support group in my community (Clearwater Florida), but even that seems like a insurmountable task and I wouldn't want to let anyone down, by not being able to follow through on that. Vicious sycle, I'm afraid. 
 
I know there are other disabilities that have it much worse, than I. Isn't it odd that most people only give aid to people that have an obvious issue, like someone with a missing limb? I have all my limbs, but I would appreciate compassion and empathy, as well.
Posted @ Friday, June 14, 2013 12:09 PM by Rebecca
Has anyone heard of or used autologous serum? It's for dry eyes. Am comtemplating trying it. 
Would like some input from users. 
It uses your blood and it's made into drops and used 4 times a day.
Posted @ Friday, June 14, 2013 12:27 PM by Evelyn Olson
For Kathy Gordon, thanks for the info. I have joined the group in Bethesda and look forward to receiving the newsletters.
Posted @ Saturday, June 15, 2013 3:12 PM by Linda B
@Rebecca I have a friend who lives in Clearwater that I met at the Sjogrens Patient Conference this year. She has Sjogrens and is a very nice person who knows a lot more since her diagnosis was a while ago.
Posted @ Saturday, June 15, 2013 4:31 PM by Teresa
Hello Teresa. Would love to correspond with your friend, in Clearwater. You may give her my email address beckaroo1@verizon.net. Thank you for your post. I hope you are having a good day, Teresa. If you want to drop me a line, I'd love to hear from you. 
 
Posted @ Monday, June 17, 2013 3:05 PM by Rebecca
Hello Judy K 
 
You were asking about foods that might work with Sjogrens. I tend to eat alot of grits, mashed potatoes and I love Peanut Butter. It's kind of funny, but it usually takes me around 20 minutes to eat a spoon full of peanut butter, but it works if I just let it sit on my tongue and let it disolve. Yogurt works for me, but although many people say that rice is good, I have esophageal dysmotility (from Sjogrens)and I can't digest it. I used to love bananas, but since Sjogrens, they now have this awful metallic taste to them. Raw carrots make me choke, so I do stay away from those. I hope that helps some. Have a great week!
Posted @ Monday, June 17, 2013 4:15 PM by Rebecca
 
It is very difficult to explain SS to anyone and there is no support group in Augusta, GA despite a huge medical and dental community. Can no longer sing or even talk very much--hard for an old educator. On methotextrate for 2 years and now azathioprine which I am stopping due to side effects. Also, gums receding and will lose teeth. Help? Any suggestios?????
Posted @ Monday, June 17, 2013 4:17 PM by Gale Sitton
Hi Gale 
It really stinks that you have not been able to do the things that you enjoy, like singing or something as simple as talking. It sounds like you've tried many medications and haven't found anything that helps. I haven't had much luck with Rx medications, either. One medication you didn't mention was Pilocarpine. I was unable to continue taking that, early on, because it made my already low white blood cell count dangerously low. Maybe you will have better luck. Fingers crossed. 
As the other writers have said, understanding and/or comical signigicant others and children really do make a difference. Constant supplies of water, mints and sugar-free lozenges have helped me manage my dry and croaking throat. MedActive products taste really good. I've tried Biotene, but it made me gag. Eye Drops (NEVER USE VISINE, use Systane, Blink or Restasis)several times a day, before bed and when I wake up during the night. It helps by having several supplies throughout the house and in my handbag. Biofeedback (paced respiration) helps me deal with my burning joints and tongue, as well as the depression from feeling isolated. I cannot stress the use of eyedrops enough. For years I just put up with scratchy eyes, until one of my corneas pulled apart, leaving me blind, in that eye. I go through cycles of trying to find a rheumatologist that cares, sitting in waiting rooms for hours and then, pulling back to re-gain my strength to try again, after them telling me "you'll just have to live with it". DUH! Keep your fingers crossed for me, in July, when I have my first visit with rheumatologist #3. From what others say, good rheumatologists do exist.lol. Sorry for the "run-on sentences". Take Care, my friend.
Posted @ Monday, June 17, 2013 7:29 PM by Rebecca
Hi Rebecca, 
 
I just read your post and feel a connection with you. I too am blind in one eye. At age 49 I was working as a nurse on a transplant case. I felt a searing pain in mr right eye and my pupil came apart.in 3pieces. I had to finish the case and the pain was incredibly bad. I was diagnosed with essential iris atrophy...had 11surgeries in 9years and finally found an eye surgeon who would take it out. Now have a prosthetic eye. Was diagnosed with sjogrens 4years ago and have significant peripheral and cranial neuropathy. I do not want to take pain meds unless I have to. Joined a gym about a year ago and find that swimming helps the pain considerably and is helping me lose weight.
Posted @ Monday, June 17, 2013 8:37 PM by Susan
Hello Susan 
 
Just when I think I have it bad, someone comes forward to prove me wrong. I realize this isn't a contest of who feels the crappiest or who has lost the most, but your story blew me away. 
 
I was told that I would need a cornea transplant, but due to other issues, I wasn't a candidate. The original eye doctor basically told me that I would have to live with it and at 51 years old, I was devastated and my mood was pretty dark. My husband was mentioning this to someone and they told me to see Dr. Desai. I thank my lucky stars, because with 3 surgeries I now have much of my sight left, in that eye. I'll need to be monitored for the rest of my life and live with constantly fluctuating vision, but I CAN live with that. Boy, its so weird how some healthcare practitioners can strive to get even better with their profession and others don't strive to improve on their knowledge and what they can offer their patients. 
 
Your email really inspired me, when you mentioned joining a gym and your swimming, regardless of the pain you're in.  
 
I have peripheral neuropathy. It feels like my left arm has a constant tournequet on it. Lyrica has helped a lot with that. I'm supposed to take Lyrica twice a day, but if I do that I'm either sleeping all day or like a zombie. Now, I take it before bedtime and I'm able to sleep better and that pain is now just numbness. I don't take it during the day, but it still helps a lot. You may want to try it. 
 
Again, Susan, you're an inspiration to me. Take Care!
Posted @ Tuesday, June 18, 2013 9:18 AM by Rebecca
Hi Ladies, 
 
I started out addressing one of you and then another of your posts come in so really I am writing everyone--I admire you so much--with the loss of an eye-with the digestion or lack there of--I have constant heartburn-he just doubled my Prevacid but so far no help-also all the troubles we all have--and even though some of you have good doctors it only seems to be a game of what they can do--there is no real cure at all.  
I also have peripheral neuropathy in my legs-both and so far my left arm--my feet turn out and I cannot put my legs together-they just go out and out more each day--my left arm hurts --I cannot carry or bend it--but a lot have it much worse and I hate to complain. 
 
BUT--I have to say this--about 1 year ago I was at my GP-and was very low--crying-feeling sorry for myself--& then I stopped--apologized to my doctor--saying I shouldn't feel that way--some have it so much worse than me---You know what his answer was " Yes some have it worse--but you are living with your pain--you have had to change your life-you are not well & don't know what the future holds-& sometimes if you feel down You are entitled." I felt so much better then--I was sort of given permission not to say I feel great all the time. 
 
I repeated this story as I hope it helps someone out there!!!
Posted @ Tuesday, June 18, 2013 9:37 AM by Judy K.
Thanks for sharing that Judy. At times, I give myself permission to throw my pity party. It always seems like when I'm in the middle of my party, I see someone else with issues worse than me. That's when I know it's time to snap out of it and use the tools I've learned in order to actively help myself. Biofeedback (paced respiration) is a tool that works for me. My "mantra" that I chant also helps me. I chant "I'm not always going to feel this bad". It convinces me to go on, because I DO have good days, as well. 
 
One of my caregivers noticed that I was having a hard time with family feeling like I should realize that everyone has aches and pains and to get over it. The caregiver said that it's a shame there aren't any pills for compassion. She is definitely an angel on earth. 
 
Hope this helps some.
Posted @ Tuesday, June 18, 2013 10:27 AM by Rebecca
I live in Augusta, GA and I was diagnosed with SS in Jan 12. I am determined to start a support group in Augusta. The closest one is in Atlanta (not a feasible option) I have good days and bad days, as all of us do, but I don't plan on giving up anytime soon though.....
Posted @ Tuesday, June 18, 2013 6:26 PM by Marie
I fortunately have a good rheumatologist. He prescribed Magic Mouthwash when I had sores on my gums a miracle. We also don't have a support group in knoxville tn
Posted @ Wednesday, June 19, 2013 11:48 AM by mary margaret moore
Please check out the blog I wrote today for my fellow Sjogren-ees: http://athankfullyimperfectwoman.com/2013/06/20/do-what-you-can-do/
Posted @ Thursday, June 20, 2013 1:26 PM by Patty O
I was diagnosed with Sjogrens in August 2011 after seeing several doctors for about 5 years. I have good days and bad days as most of us do with this disease. I am on my third Rhuematologist since then. I don't know if they are not familiar with Sjogrens or just not sympathetic to it. I mentioned the issues of my very dry skin to one of the doctors and he snapped back to stop blaming everything on Sjogrens! Sorry I just needed to vent. 
Posted @ Thursday, June 20, 2013 2:38 PM by Lorraine Villa
Hi everyone. I really need some advice from anyone. I'm having trouble with alot of things.My family except for my husband is not excepting my diseases very well at all and my daughter in-law actually got mad at me and hasn't had much to do with me in two months.It really makes it hard on me because I have grand children. The doctor called my son just to explain things to him and to see if he had any questions on my diseases and my son never called him back but just the phone called caused all these problems. I have fybromyalgia, sjogrens and lupus and heart problems as well. It has taken me out. I stay in severe pain. I don't sleep every bone, muscle tendons my whole body hurts. I also have skin issues as well. And now I'm having trouble with my throat. Not being able to sing, talk for long periods,swollowing and sometimes i just get hoarse for no reason. I'm so tired I can't stand it. I'm not able to do much of anything and then when I do I pay for it dearly. I'm at my wits end with all of it. The expense of just going to see all these doctors is just breaking us and thats with having insurance and i'm on disability. Please if anyone has any information or share anything that will help me I sure would appreciate it. I truly do pray for us all that have such horrible diseases that no one seems to notice because they can't see it, except for the skin issues and muscle loss. Thank you all for reading this and giving me any info you can. God Bless You All.. 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Posted @ Tuesday, June 25, 2013 2:02 PM by Debbie
Hi Debbie 
I have overlapping autoimmune disorders so I can easily relate to you. Do you live near a teaching hospital? I would check out Rheumatologists on their website. Check for those that specialize in Lupus and Sjogren's since they are both systemic and can affect your joints and muscles. 
Get copies of all your blood tests dating back as far as you can. 
I travel 120 miles round trip but it is well worth it. Have your husband participate in all your appointments. Because of the overlapping, you need to search for a physician that treats all types of autoimmune disorders. 
Do you live near an medical university?
Posted @ Wednesday, June 26, 2013 5:27 PM by Kathy
O you are all life-savers! I learn more about Sjogrens here than from my medical sources. Everytime some new misery shows up I think 'Surely this can't be Sjogrens' and then I see others listing the same things here. An earlier post mentioned esophageal motility issues. Is that just a fancy way of saying trouble swallowing or is there more? My swallowing problems scare me. I frequently choke on food, drink, and my own saliva. Reflux issues are new - usually stuff just goes down the wrong tube. Recently my reflux sent scalding stomach acid up when I was asleep and it went down into my lungs. Gasping for air that couldn't get to my lungs, it went down to my stomach and I blew up like a balloon. A hypoxic balloon. There's an oxymoron for you. I do most of my sleeping sitting up part way anyway because I choke so often in my sleep. That was just the worst time. BUT, more importantly I have some important questions to post and will be watching for feedback. First, has anyone out there tried Benlysta - a biologic infusion? I tried Orencia, which gave me a headache for a couple weeks, and that was considered a side effect, so I was not given more. Then we tried Rituxan, and my throat started to swell and I was taken from the infusion unit to the ER. Methotrexate made me violently sick to my stomach, Plaquenil and azathioprine did nothing. I had turned down the Benlysta months ago because I was afraid of the increasingly bad reactions I have to meds, but I have taken a dive recently, and I have to do SOMETHING. My family does not want me to take this next infusion, but I seriously would rather die during an attempt at improvement than continue on this slide that is robbing me of my strength and the last shred of independence. My next question is if anyone, ANYONE out there has tried plain, simple rehydration via IV fluids. Anyone? For the last couple years I have begged my doctor to try it. I had been in the hospital for an unexplainable cardiac event a few years back, and being rehydrated made me feel like a new person. My symptoms were dramatically improved. She finally got her supervisor to agree a few months ago and the one treatment I was allowed was downright miraculous. I had energy to move! The improvement lasted about 4 days, and the doc was hoping she could get permission to treat me that way once a week, and it would have been life-changing. but the supervisor decided it was not really a legitimate treatment (&*YTRRY!!) and has refused permission for us to do it again. Unofficially, I am told that if I can find examples of other people who are being treated with IV water, I may be able to convince the man to approve IV water on a regular basis. I can't afford to travel far from home (Charlotte,NC) but I will TRY to go anywhere that will either treat me with water, or provide data from other doctors/patients that have tried simple rehydration. Even ancdotal evidence would be appreciated - as in, just tell me what you experienced even if it wasn't a study or a treatment. Is it just me or is it not ridiculously obvious that if people are having body parts and systems failing due to dry tissues that rehydrating those tissues would be beneficial???
Posted @ Friday, June 28, 2013 4:28 PM by Julie
for Judy 
I have a cook book called I Can't 
Chew. It's by J. Randy Wilson.  
Has lots of recipes for those of us 
who have the same problems you do. 
Good luck and I hope it helps 
you and all the others who have the 
problem.
Posted @ Friday, June 28, 2013 8:59 PM by Evelyn Olson
Julie posted a comment regarding the Esophageal Dysmotility issues I've reported. 
 
It all started 17 years ago, following a surgery. At first, I thought my vomiting was due to the anesthesia. When it didn't go away, I went to Mayo, who told me it was all in my head. I've been through many many of the same tests, for different doctors, who threw up their hands and one of them said he had run out of pills to prescribe. I was placed on Total Parental Nutrition (TPN) which fed me for 17 hours a day, through my heart/circulatory system for 17 hours a day, for 1 1/2 years, until they reclassified it as durable medical equipment, which had a lower maxiumum. Insurance company gibberish for "we're not saying you don't need it, we're just saying we won't pay for it". After that, I found an IV medicine doctor who would give me lactated ringers for 3 hours a day, until his clinic was shut down. I cannot eat anything without vomiting, because since I cannot salivate, my body does not produce the peristalsis to carry food through my digestive track. Therefore, I eat peanut butter, yogurt and other similiar foods, along with liquid nurouishment, to stay alive. I hope that many who is reading this NEVER arrives at the point I'm at. Being called a bulimic, by friends/family, has only added insult to injury, along with the usual Sjogrens isolation. 
 
I hope you guys are having a good day. Who knew it could be that hard or unpredicatable.
Posted @ Sunday, June 30, 2013 10:41 AM by Rebecca
Julie, I have been lucky with the swallowing problems. My gastro doctor 3 years ago went in and dilated my esophagas (stretched it) and that made it easier. I moved and got a new gastro doctor here in AZ and he did the procedure again this January when the swallowing became bad again. The procedure is painless but I don't know the technical name for it. He has also doubled my GERDS medicine. Have you tried Aciphex? need insurance coverage to afford and I am lucky to have a good mail order plan. Have very little acid with this medicine. A couple of times I have been rushed to the ER with sjogrens symptoms misdiagnosed as possible heart attack and received IV magnesium, which made me feel like a million bucks. Prednisone also has a lot of side effects but my primary gave it to me for a respiratory infection and it improved my joint and nerve pain. However the RA took me off of it as he does not believe in it because of side effects. Good luck on your journey, we all have such problems living with this desease and can only hope to help each other thru use of forums like this.
Posted @ Sunday, June 30, 2013 9:55 PM by Linda b
@Rebecca I sent your email address to my friend and I will be emailing you also. Sorry it took so long but I haven't been feeling well in a lot of pain and still trying to work, by the time I get off all I do is sleep.
Posted @ Monday, July 01, 2013 11:58 AM by Teresa
Hey Teresa.  
 
Thank you for passing on my email address. Your friend contacted me, today.  
 
I'm sorry to hear you're feeling so crappy, while trying to keep all your balls in the air. I can relate. It was a struggle to make it to work and I slept nearly non-stop for the last three days. How is that even possible? Lol.  
 
Get some sleep and be kind to yourself.  
 
Take Care
Posted @ Monday, July 01, 2013 9:22 PM by Rebecca
I too have sjogrens for many years maybe 30 years before somebody was able to figure out what was wrong with me. I have osteoporosis, osteoarthritis, hyperparathyroidism, vitamin d, lactose intolerance, fructose intolerance, celiac intolerance, raynauds, malabsorption, loose bowls, small vessels spasms without the disease, lesions in the stomach, blood vessels tumors in the spine, sometimes hard to swallow, ear pressure in the right ear, dry mouth, dry eyes, and dry nose. I do not have a primary Doctor. I have a Rheumatologist and he says I look great therefore he will not put me on any meds. I also have very dry skin. I think I'm going to make an appointment to John Hopkins or the Cleveland Clinic. Which place would be a better place? My husband thinks I'm nuts. I get no support from him, family or friends. I do run on the treadmill, swim and workout with light weights if I don't I think I would go crazy. The workouts help me keep my mind. It's hard but I will not let this sjogrens win. The sad part about this story is it took me 45 years to find out that I have sjogrens and all of these other health issues. I wonder what came first. Being lactose fructose celiac what ever came first I believe it gave my sjogrens because nobody in my family have any of these problems. I have 4 brothers and 3 sisters and I'm the only one that had and still have a clean diet and I worked out for 45 years. It seem to me this is not fair. That's life. Thanks for listening.
Posted @ Wednesday, August 07, 2013 1:28 PM by Deborah
To Deborah 
 
Check the website for John Hopkin's Sjogren's Syndrome Clinic in Baltimore. I see Dr. Alan Baer and he is wonderful. I was formally diagnosed in 2005, but I can take it back to 1991 when I used to get pain in my jaw when I opened my mouth and sometimes, my tongue looked like someone took a slicing knife to it. I would recommend to anyone to go to a teaching hospital. Those doctors are up to date and we can't expect the same from our primary doctors.
Posted @ Wednesday, August 07, 2013 4:22 PM by Kathy Gordon
Hi Deborah and Everyone else 
 
I was diagnosed 18 years after the fact and I too was told that it was in my head, by friends, by family, etc. I was sick for so long and imagined that once they figured out what was wrong with me, they would give me a magic pill and I would be cured or managed, anyway. As most of us know, that is the farthest thing from the truth. To be fair, unless you are experiencing something like Sjogrens, you cannot relate to it. Outsiders don't know how invested we are at trying to be healthy again. It is easier to maintain good health, than to bounce back from poor health, once you have lost it for SOOOOOOO long. It has made me a stronger person, in many ways, but it isn't the way I would have chosen. Before I became ill, I worked out daily and was extremely athletic. Family and friends have asked me if I'm mad that I became ill, when I lead such a healthy lifestyle. Yes, sometimes I AM mad, but I look at it differently...If I wasn't so healthly prior to becoming ill, I could be a lot worse off or dead, from Sjogrens, by now.  
 
My siblings do not have Sjogrens, but my mother has arthritis and had an auto-immune disorder. My father had parotid gland cancer, which I'm now learning is linked with Sjogrens. I'm also learning that I have a cousin with Lupus and her child has another auto-immune disorder. I have a very large family, on my father's side, and my husband says I should make a family tree and do research on each family member and put together my own case study.  
I think my next goal is to go to a teaching hospital and see what they can do with Sjogrens. I would not recommend Cleveland Clinic, though. It's a very long story, but after 10 non-successful "sticks" for a vein, they held me down and did an Upper Endoscopy, without anesthesia, and without my consent. I was absolutely hysterical by the end of it. The Jacksonville-Mayo Clinic was a joke. They were more interested in stitching up cuts than anything more complicated than that. I also found that most of these centers ask you to bring all your test results and merely glance at them. Then, they do the SAME tests over and over again. Because I have esophageal dysmotility, the radioactive dye they put in some of these tests, became trapped in my esophagus, which cause Huerthle Cell Carcinoma, a type of very rare, but agressive thyroid cancer. I'm not saying all this to scare anyone, but be your own advocate and have someone who will fight for you, when you do go for testing. 
 
With this Sjogren's site and all of our Comments, maybe one day our Sjogren's community can change the way they treat Sjogren's patients.  
Kathy...In what way was Dr. Baer "wonderful"? Can you be more specific about your interaction with him? Are you experiencing any success with medications, etc?
Posted @ Thursday, August 08, 2013 11:01 AM by Rebecca
Rebecca 
My journey started in my early 30's. 
I was finally diagnosed at age 58 at 
JHMI. Before then, my diagnoses were premenapausal, menapausal, stress, and age. I lost friends along the way 
I have CNS Primary SS. Dr. Baer listens to me, I been on medications (Plaquenil, Evoxac (dry mouth) and Propranolol (tremors). Tests - now only bloods tests if needed. I am under going some surgery and he gave the surgeon instructions for meds and oral concerns. I go twice a year now and I take a notebook with any questions I have and he takes the time to answer them. Dr. Esen Akpak is also excellent if you are having trouble with your eyes. My experience with Hopkins have been nothing but POSITIVE! Remember, the New You is always changing and a positive outlook helps on bad days. I found the fatigue to be the most frustrating. My mother taught me that you don't have to look far to see someone worst off than you and that is the truth when you look out over the world.
Posted @ Thursday, August 08, 2013 1:24 PM by Kathy Gordon
Thanks Rebecca and Kathy and Deborah for sharing everything with me and all of us. I myself I'm having a lot of problems basically plus heart disease on top of all of everything else just like you Deborah and I don't have any support from my family either except for my husband. It's been a very hard long road one that I just doesn't seem like it's going to end any time soon or maybe never. I guess that is why it is so helpful and needed to have the support and compassion and understanding from the people that mean the most to you in your life and that is my Son and Daughter In-Law. I just don't know how to even begin to know how I should go about getting them to even take the time out so that I can even talk to them more about my health my daughter in-law made it clear she doesn't really want to hear about it. Her father just past away five months ago and so she is having a hard time with dealing with that and she said she just can't handle any more. She got mad at me for telling my son about what was going on with me. That was in May and since I've not been able to even talk to him. It's really taken it's toll on me and making my health all together worse from just staying upset and hurt over that. I took care of my father, and mother when they had cancer they both past away a little over a year apart. And then right after that I had to take care of my mother in-law for almost two years with alzhiemers then we had to put her in a nursing home, I just couldn't care for her or anyone for that matter anymore I was just getting so sick. I found out I had Sjogrens in August of last year and I have had Fybromyalgia for twelve years now and then on Valentines Day this year my doctor said I had Lupus then went to another doctor a few weeks ago and he said that he didn't think I had Lupus. I'm so confused and I'm not able to do a whole lot of anything physical at all. I try so hard but it causes so much pain. I'm so tired I've lost all muscle and tissue damage I have skin issues to so dry. Same as you Deborah eyes, mouth and nose stays dry. Hair falling out. My whole body has totally changed in less than a year and a half, it's just unbelievable to have to look in the mirror anymore. I just don't know what else to do. Doctors just don't seem to care, they think it's just not that bad. My abdomen stays in pain and sore constantly having a hard time eating and swallowing. Voice goes hoarse all the time. I'm sorry everybody for rattling on like this. I'm just at that place where I just don't know anything else to do, but so desperately want to at least be able to clean my own house and be able to cook do something besides laying around suffering because I simple can't do any thing. And it's do hard when no one especially family doesn't seem to care. I'm so alone it feels like. If only doctors would realize there is more to this auto immune disease than just dry eye, and mouth and teeth problems. I also have neuropathy which doesn't help when everything goes numb and painful and you can't walk right a lot of the time. Again I'm sorry for going on. Thanks again for all of you that share with us all. If any one has any advice I sure could use your help. I'm at my wits end I just need my Son to understand and care and support of family sure would help. God Bless Us All who have to go through such horrific diseases that are not well known enough about for us all to get the help we need.
Posted @ Wednesday, August 14, 2013 4:26 PM by Debbie
Hi Debbie 
I just got your email. I took care of my parents while working full time, raising 2 teenage boys, and a wife. I believe that all the stress is what cause my disorders. Don't try to figure which disorder is what,it's not worth the time and effort. Just lump it together to "autoimmune disorders" because symptoms are very similar. Erase the stress you can, break down chores, ex. I dust one day and vacuum the next day only if I have enough energy, wash the sinks one day, toilet and
Posted @ Wednesday, August 14, 2013 5:19 PM by Kathy
Debbie, it sounds, to me, that you are a giver and of great support to your family. Unfortunately, there seem to be roles, within the family, that continue through our lives. Since all those around you see you as "the giver", they probably have no clue that you need their support, when maybe they have been the "taker" within the family. I'm not saying that takers, within families, are terrible people, it's just the role that has served them through their lives. I learned about all this when I got sick. I had worked 80 hours a week, volunteered, and babysat for my siblings children. I loved it all, but being within my craziness, I didn't realize that I was sick, at all, until I finally colapsed. When I couldn't DO for others, anymore, my phone stopped ringing. In the years that followed, going through tons of medical tests and my family doubting I had any illness, at all, I became sad, depressed and increasingly bitter. It is only with the help of a psychologist, that I was able to find some perspective and get rid of most of the resentment. You mentioned that you were diagnosed with Fibromyalgia 12 years ago, and it made me think of all the DOUBTERS, of the mere mention of that disease. I remember that it was what people labeled you with when there was no REAL illness, at all. What a bunch of nonsense. I guess you really CAN'T argue with stupid, huh? lol. I have learned that I am blessed with my supportive husband. He has been my rock, through all of this and I feel grateful that I have the kind of marriage that has withstanded all of what's been thrown our way. It does help to have the assistance of a psychologist to decrease some of the burden on my husband and to also give me an unbiased point of view. I am very close and blessed to still have my 91 year old father, so I can only imagine how your daughter-n-law is dealing with the loss of her father. Maybe you can reach out to your son, without your daughter n law, to just talk. My family doesn't want to hear about my illness and that's fine. I know that they aren't equiped to deal with anything deeper than happy news. To be fair, they probably have a lot of stress that they don't share with me. Sometimes, it's just telling yourself that you WILL be HAPPY and distract yourself from the negative and concentrate on what ever positives you can find. As you might be able to tell, I'm having one of those "good days" and am feeling extremely grateful. We Sjogrens are your community, now, you are not alone, we are here for you.
Posted @ Friday, August 16, 2013 2:37 PM by Rebecca
Hey Kathy, 
Thanks so much for your advise and sharing yourself with me. It truly means a lot. I have thought about going to see a psychologist just to be able to have a better perspective maybe on my situation, You make sense about being the giver and my family the takers, because your totally right and its not a bad thing. And I really haven't been able to tell my Son I could really use some support and be able to just vent and talk to him when I need to. Since I took care of and lost my mother and father and then had to also take care of my mother in-law I've just felt so alone and lost, so your also make a point I really need to quit trying to dissect everything to try and figure out things that are not going to make my health any better. I really need to work on myself and find things that do make me happy and enjoy every good day I do have and also quit worrying about how clean my house needs to be. Boy it's hard came from those days where you house, laundry, supper cooked every night everything just had to be in order comes from being a military childhood. But I'm going to start doing my best to think of things in a different light. Thanks to you. I really appreciate you taking the time to give me the advise I've been needing. I sure hope you and everyone in our situations can get the help and support and with hope a cure for these horrible diseases we all have to go through each and everyday. God Bless U All.. And again THANKS ALOT KATHY... Take care of yourself...Oh and I'm so glad you had a good day..
Posted @ Wednesday, August 21, 2013 8:04 PM by Debbie
Debbie and Sjogren's Friends 
 
If I can give feedback to help you in any way, please contact me.  
It takes a long time to get adjusted to the "new and ever changing me". 
When getting out of bed seems to be a great achievement, you should know that tiny steps are better than none. The best advise I can give to anyone is to know your body, listen to it to know when to call it quits, and know that you will have limitations esp. in hot and humid weather. In the beginning, do a small task such as your tableware drawer, next day - spices, out with the old, small tasks make you feel like you achieve something that day. If you slowly do things according to your body and not over doing it, you won't feel useless but that you are contributing. If I push beyond my limits, I am done for a couple of days, so what did I get for pushing == more down time. 
 
Kathy
Posted @ Thursday, August 22, 2013 5:03 PM by Debbie
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