Friday, May 29, 2015

The Hard, Cold, Reality

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.


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.


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.


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.


Marion said...

I take things one day, one step at a time. And yes, it is necessary to look squarely at the reality. My life has changed irreparably. But that doesn't mean I cannot still enjoy the beautiful parts too. We go on, savor the sweetness, deal with the challenges and go walk the dog. It is what it is.

Anonymous said...

I've only had this wretched disease for 2 years, but it has progressed quite rapidly. Now even Evoxac and Salagen don't work anymore. The profound dryness is making me feel like I am slowly being mummified. My skin is awful looking and nothing helps so I avoid social situations. I am constantly fighting depression and I worry about what kind of future I have. I know there is no cure or even a treatment that works. But I still keep looking for that magic bullet. Acceptance is not on the horizon yet for me.

LM said...

I agree with the others, I still have yet to 'accept' this situation. I feel that I may have gotten to the point where I'm used to it, but then I do something (like waaaay over do it) and I'm quickly and painfully reminded that my life is not like it was.
I try not to let the disease own me, but I admit to wallowing in self-pity from time to time. Then, it is time for me to look around and count my abundant blessings. I was diagnosed on Valentine's Day 2012 -- how romantic. ;) Had signs for years, but like so many others I tacked it up to allergies, aches, etc. It all came crashing down November of 2011 when I ended up with a platelet count of 11. it was an astute hematologist who figured it out after an unpleasant bone marrow biopsy and every blood test imaginable. In the last 3 1/2 years my disease has progressed quickly. When one problem is cleared, another one shows up. I'm frustrated and when you think about living like this for the rest of your life, it becomes pretty disappointing. I'm an everything in moderation type of person. I don't believe in a magic pill, vitamin, treatment, or diet.
I've heard it all from special oils, food, water, etc...will cure it. I appreciate the no-nonsense approach you've taken and the cold, hard reality DOES hurt. However, I'd rather know the truth and know what I'm up against. Pretending otherwise doesn't help my situation. Shoot me some straight talk. I appreciate it.
Now...I think a donut or chocolate cake might be necessary for today. Or maybe both? :)

mcspires said...

Julia I have always appreciated your honest approach to this disease. I think we have to look at the stark reality in order to truly appreciate what we have today, because with disease progression, today may be better than tomorrow. I sometimes hate to read the comments from people that swear a change in diet makes everything all better. It belittles this disease, and already it gets poo poohed as "just dry eyes and mouth." I am happy that people find different things that help lessen their symptoms, but I am not ready to bury my head in the sand and pretend everything is "just fine." I

Nan said...

As always Julia, your comments are right on target and I for one appreciate them. There is no magic cure or one-size-fits all remedy. That's what makes this experience all the more frustrating because we are all our own unique case. It's hard work just staying ahead of this blasted disease, or maybe I'm so far behind I thing I'm still in the lead!

Acceptance does not mean giving up or giving in. For me it has meant letting go of my idea of what used to be, and embracing who I am right now, today, this minute. For so many reasons, this disease has been my best teacher. I'm not always a willing student though and do need to be sent to the principal's office from time to time! Thankfully my parents have never been called in for a meeting. Yet!

jloblow said...

Thank you for having the guts to tell it like it is.
I appreciate your honesty

Pam said...

Yes, unfortunately for us, it's not curable. Remission, though is possible, and I do believe that some diet changes and supplements can make a world of difference, along with lifestyle changes (though not the same ones for everyone!) I have Hashimoto's now, along with Sjogren's, and eating gluten-free has been instrumental in bringing down my thyroid antibodies, so I will stay 100 percent gluten free.

Unknown said...

Julia, I really don't think it was as bad as your head is making it out to be. I had typed a long response and then my system crashed. So I'll try again. You always speak the truth and for that I'm grateful. And you're also careful to qualify your own experience, versus anybody else's. You are right, we don't talk about Sjogren's being an incurable disease. We may talk about progression, and what Shirley lovingly calls OTAA Syndrome, one thing after another. The truth hurts, and many of us don't want to hear it and are fearful of it. I agree with what Nan said. It's a daily workout for me to accept the increasing dysfunction of my body and not resist it. Because when I resist it all gets worse. As someone who has severe drug sensitivities and allergies I have to look at alternative options. I know there are dietary triggers for some things, but not everything. And I'm learning, even after nearly 30 years, how closely the mind and body are linked. I'm very much enjoying the work of Lissa Rankin, MD right now. Her books are Mind Over Medicine and The Fear Cure. She's doing an eight week online workshop starting June 1 on the fear cure. I have signed up for it. Never be afraid to shoot from the hip with us, girl. I love your input. Some people may not like it, but that's more about them than it is you. You rock girl, so keep it up.

Unknown said...

And by the way, kudos to Dr. Young Guy for telling you that you're not a failure when things got worse instead of better. That's probably the most important thing you shared with us at the meeting. Sjogren's is a syndrome because we all manifest it differently and respond in many different ways to the varied treatments. Hugs and love to you!

Gertrude said...

I am sorry for your presumed foot in mouth. I hate when I listen to the script of what I said/did over and over again. Let it go girlfriend. You are wonderful and that's that!

Anonymous said...

I'm with you all the way Julia and as far as I am concerned you said absolutely nothing wrong - when is the truth ever wrong? This disease IS Chronic and Progresive and there currently is no cure. However, that doesn't mean we can't manage it, with lifestyle changes, diet and medication. People need to understand what they are dealing with (truly, understand and appreciate) before they can ever hope to live well with a disease like this. You did good! Leanne xxx

Nancy Joyce said...

My 20 something nephew, recently diagnosed with Type 1 Diabetes, stated he wished it was cancer because cancer can be fought and the battle won. A surprised hush at the dinner table, grandparents and parents protested. This Auntie looked him in the eye and said "I get it." These auto immune diseases slowly gain ground in our bodies and lives and it can be a grim prospect.

First couple of years post Sjögren's diagnosis I regularly visited despair and grief about what I had lost and would likely lose. I went into research mode (found this blog!) and learned to advocate for my health.

My goal is to be grateful for each good day, the fact that lately they outweigh the bad is a bonus. Most days, Life Is Good.

I so appreciate the truth, don't sugarcoat it! Especially when it is interspersed with your irrepressible joy. Thanks Julia.

Heda said...

Amen. There is no cure. The secret is to find what works best for you - diet, rest, exercise, medication, etc. Having learned from experience I feel so sorry for those of us who a) refuse to accept they have sjogren's or b) still think that a doctor will wave a magic wand and cure them. I am particularly sorry for those in the a) category.

Unknown said...

It had to be said.