Tuesday, January 7, 2014

Sjogren's Syndrome Welcome Wagon

Yesterday's post elicited this comment:

I think I may be the "newest" sjoggie on here. Was just diagnosed the day before Thanksgiving....feel like I have entered a whole new world, so thankful for the internet! According to my rheumatologist (and seems to be verified by the stories I've read online), I am an oddball. My diagnosis came about because a blood donation turned up an abnormal test...more blood draws followed with my regular doctor and further confirmation of an autoimmune issue. Combined with the dry eyes, dry mouth, dry skin and (now) dry...other areas....it was diagnosed as Sjogrens with possible Lupus.
First off, I'd like to welcome our newest sjoggie to our little club. We're all nice folks here and when we say "I understand how you feel" we are beyond qualified to make that statement. Because we have been there and done that and have walked miles and miles in your shoes..

As I was reading her comment, a thought occurred to me.

Hey. Don't say it, people. I just got done saying how NICE y'all are so no opinions on how frequently or infrequently thoughts occupy this foggy old brain. Tsk.

Where was I now...oh, righto. My thought. Actually it's a question directed to YOU: If your present sjoggie self had an opportunity to go back to the first few months after your diagnosis -- like our anonymous commenter is -- what would you tell yourself, knowing what you know now about this disease?


What advice or information would you share with any new sjoggie? What if you were a Sjogren's syndrome Welcome Wagon lady (now THERE'S an interesting mental image....) carrying a gift basket that contained bottled water, preservative free eyedrops, and sugar free mints?

Like this lovely lady, found here

I suppose that's two questions. But I know y'all can handle them. I'm looking forward to reading your answers.


Shara from Seattle said...

Hello, welcome to the walking half dead club. You may not be aware of it but you have entered the strange new world of invisible disease land. There is nothing that your new friends haven't talked about so please don't be shy about bringing our den mother Julia all those frightening or embarrassing questions that you will encounter. The first part of your journey will be to go through the five stages of grief. We can assist you as you grapple with these stages. You are not alone. Within Reasonably Well, you will find the answers you seek to your medical questions, the emotional support you need, and the best medicine...laughter, all tied up in a neat big bow by visiting this blog. You only feel like you are dying child, here we will teach you how to live in your new world, you will never be alone and you are welcome here with open arms.

Kelly said...

I'd add the book A Body Out of Balance, Luvena (in brown paper wrapper?) and my Amera cuticle cream to the basket for starters. Along with my favorite Sjogren's slogan in a Fortune Cookie: If it's not one thing, it's another. Because I still occasionally have really, really good days, I hesitate to use another favorite, "It's always SOMETHING." But I'd feel the need to emphasize the incredible day-to-day variability of this condition, one of its key and most frustrating manifestations.

Blogger Mama said...

My letter to myself would go something like this. (I apologize for the length. I had no idea it would be so long til I got it down on paper...

Dear Sjoggie Mama,
Pack your bags babe your about to begin a journey. You still have some completely normal no-Sjogren’s-to-see-here-days. Not gonna lie, though, some of it is just going to plain suck worse than a rainy day on vacation. But. But, before you start the mini pity party (Which it IS okay to do for yourself every once in a while) just know that you will learn more about yourself in the next few years than you have before you were diagnosed. You are strong enough to handle Sjogren’s Syndrome. No, scratch that. “Handle” is too tame a word. More appropriate phrasing would be that you take everything Sjogren’s throws at you, deal with it in your own fabulous way, and yell back “I’m not letting you beat me!”.

Until then remember a few things…
Life doesn’t have to be perfect. (And yes, you’re still working on that one.) Life is messy enough on a normal day for a normal person. Throw in a chronic illness and you’ve got a recipe for an interesting ride. Sometimes instead of being the perfect mom and wife you’ll just have to be happy that the baby was fed and that you have the ability to call out for pizza.

Learn what your limits are and stick to them. If you know that you only have so much energy when you wake up in the morning don’t try and be super mom and do that one extra thing. You’ll end up regretting it. Maybe not as much as that haircut you gave yourself in high school. But you will find yourself laying on the couch, a friends chair, a dressing room floor, you get the picture. And then you’ll regret it.

And if you do push yourself and do that extra stuff that I just warned you about, give yourself a break. You’re still learning. About Sjogren’s, about being a mom and wife, about life. Don’t beat yourself up because you don’t have the energy to sit on the floor with your girly. Just find a way around it. Become a person who thinks outside the box. You’ll be surprised about the amazing memories you end up making just that way.

Don’t forget to reach out to the friends you make online (Through your blog. ((Yes, you have one. Don’t wait another second to start it. It’s so cathartic to get everything down in writing.)) And, also friends you’ve met through other blogs, and social media.). Sounds crazy, I know, since you haven’t met a single one of them in person. But they are a wealth of information and their hearts are so beautiful and uplifting when you just need someone to listen and understand your pain.

Keep your sense of humor. About all of it. Laughter makes things so much easier to deal with.

You’ve got this!

Sjoggie Mama

Anonymous said...

Dear Sjoggie, you now have the answer " your not mad you were really sick". So top 5 tips to keep your sanity!! 1. Laugh- its good for the soul. 2. Your spouse is not your enemy, find an open field and scream at space instead. 3 live - dont let it steel your life. 4 Your a fighter! Take pain by the horns and hold on. 5 if you get put on steroids, Warning your body will change shape, humps lumps and you will develop moonface. if this happens go to step 1. Life doesnt have to stop your amazing! Enjoy the good days, let others help you on the bad days. Peace!!!

Angana said...

Welcome to our unpredictable, nerve-wracking, exhausting world! A world in which no two days are the same, plans go awry, and it often feels as though you're juggling an ever increasing variety of china plates, lethal power tools, and eggs all at once.

Some of the most valuable strategies I've developed for navigating life with Sjogren's are
Learn to do a body scan, a practice of developing awareness and acceptance of body sensations. This will help you check in with yourself and make choices that support your well-being. You can find instructions here: http://www.im4us.org/Mindfulness-Based+Patient+Handouts

Savor and celebrate all the little things that bring you joy, comfort, and ease.

Be kind to to yourself. Rest when you need to, ask for help, choose the easy way. Trust me, you'll accomplish so much more with the energy and strength you conserve.

Finally, here is a lovely, succinct piece of encouragement from Stephen Fry, who was writing about managing the experience of depression, but could just as easily be about managing the experience with Sjogren's: http://www.lettersofnote.com/2009/10/it-will-be-sunny-one-day.html

Kris said...

I just want to thank everyone who posted. I suspected I had Sjogren's for years but, like the person quoted in the blog, just had it become official around Thanksgiving. I'm going to be 60 this year, divorced with two adult children living with me. One works the other has High Functioning Autism and is looking for work. Just ended a relationship with a man who refused to even attempt to understand child two's disability, and now this. Everything is changing at once and what has been written in the comments has been so uplifting to me. I want to thank you all.

Anonymous said...

I only wish I would have seen your comments 4 years ago when i was diagnosed. Part of the journey that I didn't expect is the 5 stages of grief. Well lets just say i fought it tooth and nail. My biggest obstacle was denying that i was "that sick" and it wouldn't go away even if I ate right, got 8 hrs of sleep and exercised.
I can now finally enjoy the humor that this site provides us all in our journey.

Anonymous said...

A welcome wagon indeed. That's how I feel every time I click on your page, Julia. Your blog gives me comfort on days I don't feel well and welcomes me on days I'm reasonably well.

Thank you to those who've left comments on this post and in the past. Its always great to know there are others going through the same thing. Dizzy days, foggy memory and the med induced nightmares have been my symptoms of late. My story is long just like many of yours and I get tired just thinking of the days before diagnosis. When I read this blog I find that I complain less to my family and I probably smile more.

My advice to a new Sjoggie is to read every book, every website, every pamphlet on Sjogren's - trust your doctor or get a new one - get to know your health insurance policies - decide what meds you need to take and then when those formalities are done REST. Truly enjoy life on the good days. Rest on the bad ones. And in between (which is most of the time) get to know yourself. You'll start to notice patterns or warnings your body gives you before a flair. You'll also notice how much you really love or hate your beauty products. You'll notice what's really needs to be done at work most days and what can really get done when your not well. If you are a parent to young children like I am - take comfort in knowing that your kids will be surprising kind and understanding because you are even more kind and understanding now that you know yourself better. Love those close to you and tell them often. They are going through this with you.

Take care,