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Yesterday, a newly diagnosed Sjogren's patient posted a comment that I thought deserves a post all of it's own. Remember when you first realized that you had Sjogren's syndrome? And when you thought, "What the HECK is Sjs?" And when you wondered if this diagnosis meant that you should panic? Anonymous must be feeling the same way. Kate Stout left an excellent response, but what else would you add if you had a chance to sit down with anonymous over a cup of coffee? Here's her question:
Anonymous:Just found out I have Sjogrens. Bit of a shock - I'd never heard of it. I'm a 32 year old female........ My questions are a) Does anyone else with Sjogrens have associated ITP/platelet issues? And b) Generally do we all get by? I mean we might have day to day issues and flare ups occasionally but it's liveable right - having Sjogrens? You can still have a good, long, fun life? The more I Google it the more frightening it seems. Are there any groups I should join?
Kate Stout said: Anonymous - two excellent resources are the Sjogren's Foundation, http://sjogrens.org, and a very knowledgeable and friendly support group called Sjogren's World at http://sjogrensworld.org.
Everyone's path varies. Some people have "just" dry eyes and mouth, some have occasional fatigue, and some have a large number of troubling symptoms. There's no way to know what your path will be, and after the initial shock is over, you'll find a way to deal with whatever your particular details are.
Pour yourself a cuppa your favorite beverage, grab your phone or computer, and share your your valuable experiences and information that would be important to a Sjogren's newbie in the comment section below.
12 comments:
After the shock is over I would research the disease and get as much information as possible.
Allow yourself to grieve. Like with most Chronic Illnesses it is something that is totally unexpected.
Don't beat yourself up on your bad days. Allow yourself to listen to what your body is saying.
As I tell people who have questions for me about Sjogren's. I tell them " well, it is what it is". It's something that I cannot change. So you have to learn to listen to the signs and adjust accordingly.
In the beginning, 7 to 8 years ago my flares were sporadic. At the current time I have been in a flare for the last year. So, for today I guess this is my new normal.
A good, fun life? Absolutely!
I experience some pain every day. Some days I have a lot of pain and fatigue. It's frustrating that it's unpredictable. It's hard to know, but I suspect I am sort of middle of the road, Sjogren's-wise - I know Sjogren's patients who are significantly healthier than I am, and ones who are much more disabled by it.
My life is super fun, though! I've made some adjustments (mostly in terms of pacing), but have tons of fun and adventures. Like my healthy friends say they're jealous of the cool stuff I do.
I just consider it before I take on an adventure: What can I do to minimize the potential impact on my symptoms? Is it worth it to me to potentially increase my symptoms short term to have a particular experience?
There are successful athletes, even pro athletes, with Sjogren's.
Having (or finding) supportive, understanding friends makes it much easier, for sure.
Each case is unpredictable, and most require some accommodations, but, yeah, Sjogren's doesn't mean you can't have a good, fun life. (I can't speak for Julia (this is her blog), but based on her posts, I suspect she'd tell you that Sjogren's has impacted her life, but that she also has a good, fun life. That's how it looks from here, anyway!)
Dear Annonymous,
There is grief attached to any diagnosis, SJs is no different . . . for all of us. Educate yourself about SJs - and, as Kate said, it takes a different path for all of us, but know you aren't alone (THE most important key in walking this road.) Definitely link to the two .orgs mentioned.
No matter how minimal the symptoms nor pronounced - document (keep a simple journal); DO keep all doctor appointments. Because most of us suffer from dry mouth/dry eyes regular dental and ophthamologist appointments are very very important. New symptoms? don't hesitate to reach out to your doctor (if you don't have a rheumatologist - - find one.)
Continue to love life - - be active all the while listening to warnings from your body that you need to rest, and, if need be, make adjustments.
Have found that listing 3 things daily to be grateful for helps (some days that is difficult but nonetheless possible); daily identify your emotions - give them a name (i.e.- fear, anxiety, joy, etc) - makes them much easier to deal with; and the gift of a hug or a hand on the shoulder - - find someone that will willing offer this to you (a support system is essential)
And, finally ...YOU CAN DO THIS! :-)
I agree with ALL the commenters... nicely done! So I don't have much to add except maybe... I DO continue to have a good/fun life despite all the cr*p. But despite it all, I know for myself I have to continually focus on all the good around me, in my life and in the world, and be grateful for every wonderful thing I see, hear, feel, etc., and all the wonderful people I DO have in my life (even though some people have dropped me because they can't hack it). I allow my grief (and sometimes a pity party) to be of a short duration everytime something new happens, and then I turn back to the gratefulness (I must, or I would probably sink into an emotional hole). Oh, and check Julia's blog every day!!!
Dear Anonymous,
I also agree with the above posts. You CAN have a fun life, but you will need to prioritize and pace yourself. There are, admittedly, some things I don't do any longer that I used to because I know the end result isn't be worth it, but you learn to accept and find new things that you enjoy. I've learned to plan rest times so I can be available for the fun times. Decide what things will be your priority of the day, week, month and rest before them.
Every person has a different journey with Sjogren's as the disease targets different things for different people. Research and find good doctors. If you don't like the ones you have, find new ones. Keep searching until you find the ones you feel comfortable with and who you respect. I've been dismissed one too many times as, "oh, you have dry eyes and mouth". If only!
Take excellent care of your teeth and eyes. I wish someone had really stressed this to me. I'd always had nice teeth with very few problems (no cavities until my late 20's), so I continued my usual routines. I would strongly encourage you to become meticulous about your teeth and eyes to prevent problems in the future. I now brush (3) times per day and floss at least once, use alcohol free mouthwash twice per day (ACT moisturizing is my favorite). I learned from (2) root canals in 3 months, TMJ, and oral thrush that taking care of your mouth and teeth is no longer brushing twice per day and flossing every few days (shame on me). I've also learned to keep my eyes as hydrated as possible. I wasn't using my drops nearly enough. I started with thera-tears and have since moved on to restasis and thera tears in between. Blepharitis and swelling is continual battle. You only get one set of eyes...take this very seriously and have them checked and keep them moist and clean. Use a humidifier at night, and keep it clean. I also use saline spray for my nose.
Educate yourself and read all that you can. Johns Hopkins Sjogren's pages are very informative in my opinion as well as Sjogren's Syndrome Foundation. Julia has a plethora of information and if I am looking for something new that has popped up, I know I can find it here!
Cry it out, allow yourself to feel frustration and anger, then turn the page. Every day I try to make a point to count my blessings. I find they far outweigh my troubles, even when the load seems too heavy.
PS. I thought of something else I need to practice: flexibility. I was a pretty structured person before SS came to live in me. And now RA. But I've learned to be flexible. Because the body issues may change from one minute to the next, and oops! Now I can't do what I had planned on doing. So now I will do something else. Flexibility because meds take a while to kick in, and after a while, oops! They don't work anymore or there are problems, and now you have to try a new med. Etc.
Oh my gosh! Thanks guys - I kinda just lost it when I realised you had made today's post just for me. I'm so glad I found this page!! It's good to know others out there have walked this road because it was a little dark and lonely there for a while. I don't quite know how to mentally deal with going from a seemingly healthy 32 year old to a woman with a Chronic Auto-Immune Disease all within a few months. How did that happen?! A lot of you are saying to listen to your body and know when to rest. I guess I don't know quite yet what I'm listening for - do I just take it easy when I get exhausted or am I looking for more specific signs and triggers (eg swollen parotid glands, achy back etc). I do full time rotational shift work for an emergency service & I love my job. Do you think full time shift work will be doable long term with Sjogrens? I just want to have some idea of what to expect. It's just my husband and I at the moment - can I still have children or is it now too risky?
I also just read that Venus Williams the tennis player has Sjogrens - do you know of anyone else? Even just knowing there are happy women out there who have had Sjogrens for many years would be very helpful. I need some Sjogrens success stories to hold onto while I get used to all this. You are all wonderful. Thank you.
Sjogren’s is a systemic disease. Sicca is the tip of the iceberg, the obvious thing that is easiest to measure to notice for most patients and health providers. The “triad” of sicca-fatigue-pain is seen in most, but not all patients.—by the time they are diagnosed. I think once we get good tests that are early and accurate for diagnosis, we will have a much better idea of the range of symptoms and severity of Sjogren’s. Sicca, fatigue and pain are all typically insidious in onset. I have interviewed over 20 Sjogren’s patients in great depth. Most of them had subtle signs for years before more obvious onset. Sometimes these symptoms slowly got worse. Or sometimes they were obvious but resolved, such as an episode of arthritis or parotitis.
Those who present with organ system involvement, especially neuro/ CNS , may not have sicca. Sometimes noticeable dryness can be delayed for years. These patients are often misdiagnosed as lupus, MS, etc. Systemic autoimmunity may be completely missed as the underlying cause because the specialist is focused on treating a sometimes life threatening situation. Exs: Interstitial lung disease, CNS Sjogren’s - including transverse myelitis- autoimmune hemolytic anemia, autoimmune hepatitis, primary biliary cirrhosis… and so on.
I suspect the younger/ earlier cases of Sjogren’s may not think that their myofascial pain is not normal and attribute this to “tension and stress”. This was true for me. Fatigue is usually managed OK until it gets very severe , also true for me. I had severe dry eyes by my early 30s, but managed to work F/T, have 2 babies, and even trained for a half marathon (those were the days!). Yet I developed more and more inflammatory changes that just hung on: tendonitis in multiple joints/ carpal tunnel/GI and so on. I blew off early signs of sensory peripheral neuropathy because the pain was mild. I simply overrode the fatigue figuring it was just “stress”. In my 30’s, I would check the “excellent health” box on the Kaiser surveys. Now I know this was not true: I was simply “doing the right things” with lifestyle, and going into overdrive to compensate for many early Sjogren’s symptoms.
Why might this be important? I think it is good for those with less severe symptoms to be aware that these things can be subtle so they can be addressed, with lifestyle, TCM, Qigong, meditation and so on. I also believe medical treatments/meds can prevent progression (we need studies, but it is logical). I believe that had I done more resting and had better support systems in place that I would not have become so intensely ill.
I have met Sjogren’s patients who function quite well, and seem to be mostly about dry, and that is great. They probably are keeping that brewing stuff at bay, or managing with minimal systemic symptoms. However, understanding the risk, and the need for very good self care, pacing, and so on can possibly make a big difference in long term outcome.
Oh - also the sunshine thing. How long per day/week etc would you recommend being out in the sun. Do I have to avoid it completely now?
I am pleased to be "hoisted" into the main thread of the conversation. As everyone has mentioned, it's still possible to have fun. Some people are still physically very active, and some are less so. But you can enjoy yourself even if you have limited reserves.
About being tired - After a while, you'll know it when you feel it. Imagine I was trying to describe what a cold coming on feels like. And yet after experiencing that a few times, you do know what it feels like. When you feel that happening, you need to prioritize how you are going to spend your energy. If you have to get to work, maybe you shouldn't try to re arrange the furniture! :-)
Regarding working in the ER service - I'm sure that's a very demanding job. Give yourself some time to understand how your health issues are impacting you. You may want to do some contingency planning about "If I can't do this, what else could I do?". Shift work is hard on the body, regardless of health. And then over time see if you can move towards something that is physically less demanding.
You're trying to take in a lot right now. It will get sorted with time. Hang in there!
I feel like the fatigue has taken some of my fun away ! I work all week and then have to rest all weekend. I'm thinking it might be time to quit work, rest, and enjoy life ! I love my job, but it is getting too hard. Dont let the disease rule your life. That's been the hardest thing for me.
Thank you Kate.
To be honest I've had a very rough 4 months or so now. Having trouble mentally dealing with suddenly having a "chronic immune disease" but also kinda glad my doctor took me seriously and found out what's going on. I'm not yet on any medication for Sjogrens because the last lot killed off my platelets - got the platelets fixed (hopefully) and now waiting for the next Rheumatologist appointment to get on different medication to help me. A lot of the serious comments about organ stuff are scary and overwhelming. How many "flare ups" do most people have per year when it gets bad - how long to flare ups last? Any tips for more energy? Vitamins? Coffee? Exercise? Right now I've got some errands to run & housework to do but can barely get myself off the couch to make a coffee. I feel so very flat.
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