One: My daughter wore a lovely dress to church on Sunday. But I didn't realize that Audrey II - the man-eating plant - was in the pattern.
Wednesday, I attended another of our local Sjogren's Syndrome Foundation support group meetings and as I mentioned yesterday, enjoyed it very much. But later, after I had settled myself in bed for a nap, I had this niggling feeling of uneasiness. I thought about the conversations during the meeting and my contributions, and I couldn't shake the feeling the I had put my foot in my mouth (yet again) but couldn't quite put my finger on exactly what I said or did.....
Hm. Let's see. I thought. What did I do this time that will make me cringe when I remember it?
I went through the list of my usual faux pas:
Did I show up on time and in the right location for the meeting? Check.
Was I wearing shoes that matched and did I have all buttons and zippers buttoned and zipped? Check.
Did I goober on any article of clothing at any time during the meeting? Nope. Well.....just one little coffee dribble but it was on my pants so that doesn't count.
Did I say something stupid? Ah, geez. Bingo. Bummer. Yeah. I did. And suddenly, I remembered exactly the words that I wish I hadn't said. It happened like this:
The meeting was about to end and I jumped into the dwindling conversation. So, can I just say something here? (Which was kind of a goofy thing to say considering I had been blabbing for the whole time). Several of the group members had shared their firm belief that excluding certain foods in their diet had reduced some of their symptoms, and I felt the need to comment on my experience with this type of diet. Y'all probably remember my endless blogging during a lengthy experiment with a very restrictive autoimmune protocol diet which ended with me feeling worse than when I started - constant diarrhea, increased fatigue, and crankiness that exceeded all previous levels.
I began by sharing that I had followed very carefully an elimination type diet, which didn't end well. Then recounted the conversation about said diet with Dr. Young Guy during which he gave me the go-ahead to try it with one caveat:
"Julia," he said. "It's fine as long as you get good nutrition, but I also want you to know that these diets don't work for everyone. If you try it, and don't get good results, I want you to remember that it's not a reason for you to feel as though you're at fault, or that you're a failure."
Everyone had been listening, and several of nodded their heads in agreement. I could see that others had the same experience as I had, and I felt as though I had expressed this in an accurate and non-judgmental way. But then I felt that I had to add just one more thing.
Just one more thing.
Yeah.
There it was. Geez. The bluntly delivered words that caused everyone listening to squirm in their seats:
So, remember that this disease HAS NO CURE. Yet. And there's no diet, or supplement, or anything else at this point that has been proven to CURE autoimmune disease.
Silence. Several people looked down at the table. Most broke eye contact with me. I could feel an immediate change in the atmosphere of the group, and it wasn't a change for the better.
Drat. I thought. Why? Why did I have to remind everyone of what they all knew? Why did I have to point out the obvious and very negative aspect of this disease?
The moderator quickly broke the awkward silence by moving on with the meeting's upcoming schedule and agenda after which we returned tables and chairs to their original position, said our good-bys, and everyone headed home. I suppose that the focus required to get myself home and fed and into bed pushed my dumb stupid comment into the back of my mind. But it forced itself back into my consciousness as I rested and my energy began to return which is why I didn't realize the cause of my uneasiness until I settled in for a nap.
I replayed it all over and over in my mind, carefully examining my feelings as I reviewed my comments. After I gave it some thought, with surprise I realized that perhaps this wasn't as catastrophic a comment as I had initially believed: Yes - I am regretful that I dropped the "incurable" bomb in a way that dampened the mood of the group. Yes - I wish that I could have couched these facts in more tactful words, or waited until a better time or a different meeting to share this.
But.
Still, I have this sense that it simply had to be said. I hadn't heard anything even remotely similar to my comments in all previous meeting that I had attended: That there IS no cure for Sjogren's syndrome at this point. Some physicians and researchers feel that it is a slowly progressive disease, meaning that the assault on our body's normal tissue by autoimmune cells is an ongoing process.
There it is, I guess. The hard cold reality of our disease which is so challenging for me and everyone else dealing with autoimmune issues to accept. To come to some kind of acceptance with. To process, to assimilate, and then to move on with our new lives. I can't speak for anyone else, but I know that on occasion I need that reminder. I need to revisit that most difficult process of dealing with the facts of autoimmune activity.
I need to realistically build my expectations for my life on this hard, cold reality.
Because sometimes I forget. Sometimes I let myself believe the hype surrounding so many promises that if I eat these particular foods, or if I don't eat these particular foods, or if I take this vitamin, or if I slather on this cream, or if I do one of a million things............that I'll be free of autoimmune disease. I buy the book, or the product, start the diet, take the vitamins, and eagerly wait for the promised results. So far, nothing has done it. Nothing, including many medications prescribed for me by my physicians, has cured and healed my body completely.
Have there been things that have reduced my symptoms? Yes. Absolutely. Realistic exercise, mindful meditation/prayer, a healthy diet that includes lots of vegetables and fruits, avoiding UV rays, pacing my day to preserve my energy, trying to hydrate my eyes mouth and skin, compliance with and constant evaluation of my medication regime, being open to alternative treatments from traditional medicine and being completely honest with my prescribing physicians about those treatments, are all important measures that usually help me to manage my symptoms.
But.
None of those things have cured me.
This is unpleasant to consider, yet still it is necessary for me to be aware of this fact as I continue to live with this most difficult disease; or I will repeatedly set myself up for disappointment and feelings of failure when various methodologies that promise cures don't prove to be what they claim. I need to remember the biological facts of Sjogren's and with that acceptance, I can set aside wishful thinking to find authentic joy and happiness in focusing on the abilities that I really do have.
Sometimes the hard, cold, reality is what I really need the most to find a warm, meaningful and positive life.
Guys. What fun. My friend will become the grandmother of a bouncing baby boy soon! So we threw a party, of course.
"Earth laughs in flowers." - Ralph Waldo Emerson
Indeed. Which means my back yard is very, very happy and so am I.
I was thinking about exercise the other day.
You'll note I said THINKING. Not DOING.
Several health and wellness professionals remind us that even if one isn't able to do lengthy strenuous workouts, small bits of daily exercise can still be beneficial. It appears Doug Savage has one solution to incorporating more activity into our daily lives:
Most of us have memories of a teacher who influenced our lives. I certainly do. But my greatest teacher has been chronic inflammatory autoimmune disease. Obviously, I use the word great here not as in “wonderful” but as in “of extraordinary importance and weight.”
A few years ago a young woman approached me after a talk I gave about living with chronic disease for my entire life (well, from twelve forward, so close enough). She wanted to know precisely what I meant when I said: At the end of it all, it really hasn’t been all bad.
Understandably, she wanted to know what wasn’t all bad about always being unwell. She had been recently diagnosed with Lupus and saw the life she had known and valued disappearing. She was overwhelmed by the unknown and confused by conflicting medical opinions about treatment options. I said a few things, likely not useful, but her question stuck with me. Precisely what do I mean when I say that?
During virtually all of last year I was sidelined from doing almost anything as I went from one autoimmune crisis to the next. The only thing I could do consistently was to let my mind spin out of control, which often took me to destructive destinations. That young woman kept appearing in my daydreams. If I were to offer anything useful to others who live on this planet of chronic illness, I had better come up with something to back up the platitude. At first I thought the deeper meaning was that I pay more attention to the things that count in life, and less to those that don’t. But many of us do that, whether we’re ill or not. I spent some time thinking about how to fashion a life of illness into a life of lessons. Here is how illness itself became a great teacher to me, and the ten lessons I took from it. Continue reading here.
Happens to me all of the time: I sit down to my computer and do a search on an ailment and end being either scared silly or totally confused. It's so important to get your medical information from reliable sources, such as healthfinder.gov.
.....that our recent road trip was indeed a success. We dubbed our quest "The Mission Mission" since our goal was to visit several of the northern California Spanish Missions and anything else that caught our attention between Portland, OR and Santa Cruz, CA.
What fun.
After last week's road trip, I came home feeling pretty optimistic about my energy coping tactics. We rolled into town on Saturday, my travel adrenaline rush kept me going until Sunday (isn't that the weirdest thing how one can go from such a high to such a low??) and I crashed on Monday, right on schedule. I've been pretty good about resting and pacing myself this week and easing myself back into some kind of post Sjogren's normalcy, and I have to admit I felt pretty smug after doing a little grocery shopping and housework.
Then yesterday I got all cocky and decided to haul some empty decor boxes down from the attic. I grabbed a few dirty towels and a half-empty cup of cold coffee along the way because loading my arms right up to my eyebrows with lots of bulky items seemed like a good idea at the time, headed down the staircase and promptly fell down the last few carpeted stairs onto the hardwood floor.
I sat there in a puddle of coffee counting my lucky stars that overall I was fine. I also thought about what a dumb stupid thing I had done and that it could have turned out much worse.
The very familiar and all too appropriate phrase, Pride Goeth Before a Fall also came to mind. Yet again. It would be interesting to do some kind of search on Reasonably Well to see how many times I've typed THOSE EXACT WORDS in response to some dumb stupid thing that I've done simply because I was certain that I could rely on some skills that I no longer have.
Hey. I need someone to print some version of that adage on about a dozen posters and wallpaper my house with them. This one's a goodie:
The SSF Sjogren's Quarterly Spring 2015 issue contains an excellent new Patient Education Sheet. To see other SSF Patient Education Sheets, check my left sidebar using a non-mobile device, or visit the SSF site here.
First, to answer the question: YES! My brilliant, genius, fabulous hubster did indeed recover the last batch of trip photos after I deleted them from my camera. After I get them edited, I'll post a few. Like this amazing one of an organ with faces painted on the pipes. Extra credit for all you Californians - and anyone else - that can identify where I took this shot:
Yup, I do.
Our friendship with Terese and Greg is a rare thing. Although I try never to take these two special people for granted, still on days like yesterday the uniqueness of our relationship is unmistakable.
Why yesterday?
Because as we were unpacking our car after spending nine days with each other, I really missed the idea of us not all having breakfast together.
Seriously.
Oh, hey. It's great to be back in our own house and into our routine again, just John and Lulu and I, but the fact that we didn't all climb out of the car thinking, "Thank GAWD that's over," is pretty significant.
Well, at least I didn't feel that way. I can't speak for the others. But the feeling is mutual, right guys?
Um, guys? RIGHT, GUYS?
Wonder where our adventures will take us next? With our latest outing, we've set the bar really high for cool John Julia/Terese Greg travel destinations.
I'm going through camera withdrawal, really I am.
Since inadvertantly trashing two day's worth of vacation pictures, my Canon has been tucked away into John's suitcase awaiting our return to home and the potential for John to safely retrieve the missing files from my camera's card. In the meantime, I'm not allowed to even look at the thing.
WAAAAAH.
Yes, I still have the camera on my phone, but as anyone who has developed a relationship with a REAL camera, (Developed? See what I did there?) we alll know that punching a phone button is a poor and unsatisfying substitute for hitting the shutter button, feeling that snap and hearing the unmistakeable sound of a genuine shutter closing.
Oh, man. This is so hard. Sob.
We've been barrelling along the freeway in sunny weather past gorgeous mountains, lakes, rivers, and even some wild animals -- like GOATS -- and all I can do is futilely and reflexively tap my right index finger against a button that isn't there. This is torture, people.
It's been suggested that I need a camera plushie to hang on to; or that I need some blinders; or even worse - that in order to put me out of my photo taking deprivation, it may be best to treat me like a parrot that needs it's cage covered with a pillowcase before going to sleep.
This is all probably true.
Which doesn't make it any easier.
Greg? and Terese? I love you guys like family, but without my camera sitting in my lap, road trips with John and y'all just aren't the same.....
Well. Read on to find out why this post doesn't include a photo.
I've enjoyed multiple things about our trip, one being seeing the amazing art found in the Missions that dot the California coastline.
