Pain Is In The Eye Of The Beholder

Rate Your Pain On A Scale of 1-10…

I would like to address the topic of pain today. I would be happier if I could write about it without having to experience it, but I have Sjogren’s Syndrome so that’s not realistic. How many times through the years have we Sjoggies been asked to rate our pain on a scale of 1 – 10…one being no pain and ten being the worst pain you have ever had in your life? Countless right. We have all been asked that question multiple times by multiple doctors over a period of multiple years.

Blah Blah Blah

Blah Blah Blah

To be honest, it seems as if the question carries little weight to both doctors and patients. I mean after all pain is subjective.  I always feel like asking if the doc would like me to take all of the different pain site ratings for my entire body and give he/she the average pain level? For many of us, there are several chronically painful areas of our bodies.

Is It Just Me?

The reason I think that the pain question carries little because I think that there is a well-entrenched skepticism about ‘patient’s perceptions of their pain. Think about it. Doctors have been trained to almost assume a drug-seeker status first, rather than a patient giving an honest answer about their level of pain or at least that has been my experience with a number of doctors through the years. And I have heard that same story over and over from other Sjoggies and chronically ill people that I know. I would never generalize that all doctors, address chronic pain issues with their patients in this manner. But a great majority of them do.

According to a recent article released on September 24, 2015, by the Pain News Network, opioid guidelines are being updated, and will soon make it even more challenging for patients with chronic pain to get or continue to receive the pain treatment they need to function.

 Pain News Network – Specialist Groups Behind CDC Opioid Guidelines 

I get that it is a balancing act for the prescribing doctor. However, I also think that patients with chronic pain can be managed in a pain management/rehabilitation setting. I know this because this is how I manage my pain. And yes, the process is not fun. I stopped by a recent lab I had never been to; to take a urine drug test (which chronic pain patients who are managed in a pain clinic must do). The nurse asked to keep my purse while I was in the restroom & turned off the running water in the bathroom. I was totally perplexed. It did not occur to me until I left, that she must have thought I brought someone else’s urine with me? Heck, I’m still not sure. This is the reality for patients with chronic pain. If this is the demeaning way we have to be treated just to have pain relief, we are forced to endure it or suffer a great deal of debilitating pain. I know that the first thing people do is to tout drug addiction statistics and pain med abuse, but what is the statistic for patients who are in so much pain they take their own lives, because they cannot live with the pain anymore?

Surely, there is a happy medium that can be found somewhere. It seems that the doctors who truly understand chronic pain and how it really feels to be us on a daily basis are physicians who have themselves, become ill. When one has to live with chronic pain every day and have a severely affected quality of life, the perspective quickly changes.

A  true sentiment I came across

A true sentiment I came across


What Is The Answer?

I don’t know what the answer is, but I think the dialogue should start with a level of trust and true assumptions based on facts. Bring all of the stakeholders to the table to illuminate the big picture, instead of highlighting only the parts in which  some wish to address.

Until then..our subjective pain is just one aspect of the many Sjogren’s  and chronically ill battles that we face each day.

Here’s hoping that your pain is being managed effectively.


Posted in And the research says..., Random, Scholarly Articles and Such, Searching for Answers, Support, Symptoms | Tagged | Leave a comment

4 Things That Everyone Needs

Truer Words Were Never Spoken

Not long ago, my husband handed me a paper that he came across. The paper was entitled:  4 Things That Everyone Needs. There was no author listed, just the following four lines:

  1. Everyone needs something to do.
  2. Everyone needs someone to love.
  3. Everyone needs someone to believe in.
  4. Everyone needs something in their life to hope for. 

He said to me, ” Ya know, this is really true”. And I agree.

I think it is true of everyone whether you have Sjogren’s or not. But as I thought about it from the perspective of having Sjogren’s, I could not help but to think that these statements are especially important to Sjogren’s sufferers and those with other chronic and serious illnesses. We are folks who are at great risk for losing sight of what is most important, as we fight our medical battles.

Something To Do

Something To Do

Something To Do








Sick people often struggle to do meaningful things. So much of our time can be taken up with doctor’s appointments, treatments and just feeling bad, that our energy is depleted. If we have to lose something from our list of to-do’ is typically something fun or enjoyable. For instance, the Spoon Theory points out that we must make smart choices of what we choose to do with our limited reserves of energy. For most of us, that means the medical “everything” in our lives, takes priority. And that does not leave a lot of room for other non-medical things that help to keep us fulfilled.

Someone To Love

Someone To Love

Someone To Love







We all need people in our lives. Most family members and friends who support and surround us, help us to make this life journey together (good, better  or somewhere in between). Loving others is the part of us that will hopefully always remain healthy. Loving others and having them love us back, should always feel good. It should always help us to feel stronger and capable of tackling anything that comes our way.

Someone To Believe In

Someone To Believe In

Someone To Believe In







As much as we  need people to love, we also need people that we believe in. Some may call that Faith. Believing in people comes in various forms, we believe in other people’s ability to succeed; to rise above their circumstances; to heal us; to do great things, to lead us, to teach us; and in general, to be the best of humanity. We are better people when we believe in others and when they believe in us.

Everyone Needs Something In Their Life To Hope For


Something To Hope For

I believe that when we lose hope, we have lost everything. For without hope, we give into our sadness, fears or depression. We feel like our lives or health cannot become better and we allow ourselves to become “faith-less”. I for one, am not willing to let anything or anyone rob me of my hope and faith…no matter what my circumstances are. Will I allow myself to have a few pity parties along the way? Absolutely. But hope is never lost or too far away that we can’t grab onto it and hit the re-focus button.


Really..It Makes Sense

These 4 tenets make sense to me. When you think about it, if any of these four ideas are out of balance in our lives, we don’t feel good. It feels like an intangible dissatisfaction..that we sometimes have a hard time defining. Yet, the concepts of something to do; someone to love; someone to believe in and something to hope for are such simple truths.

Can Life Really Be This Simple, If We Let It?

I think so.

Hoping that these truths are abundantly present and fulfilled in your lives.

SjoDry and Contemplative


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SjoDry’s Drag Race

And She’s Off..

The Old Me many of you, I drag. I drag myself through my home; my workspace; my day and my life. Sjogren’s fatigue is like an unwelcome weight that has somehow been attached to my body. Once upon a time, there was a lively lady, not named SjoDry, with the energy of a puppy dog playing chase with it’s owner.

I bounced through my life with unstoppable energy and enthusiasm taking on anything and everything. I miss that me! I want that me back. Of course we have all heard the phrase, ‘change is difficult’. And it can be. But typically, change is just mildly uncomfortable. Like a job promotion that takes you away from a location you love and leaving your family and friends. Or a child going off to college. Changes that require one to make adjustments to a quickly adapted new normal. Not the life-altering change of Sjogren’s fatigue.

Think LAVA!


Sjogren’s Fatigue …Like Molten Lava

When trying to explain this kind of Sjogren’s fatigue to a doctor or someone else, a few words come to mind, such as: Molten lava; Pervasive and Encompassing. Sjogren’s fatigue has a depth that feels like you are being pulled under water with heavy weights on. It permeates the body in an intensity that most people will never experience, or can even comprehend for that matter.

In the past several months, I have experienced such a deep and overwhelming exhaustion, I wondered if I would ever see the old me again. I felt as if I was doing some kind of slow motion departure from life as I knew it..kind of like one of those scenes in (if memory serves) from Armageddon..where Bruce Willis floats off into the black abyss of space. Yes..Sjogren’s fatigue in my life, is reminiscent of moving through each day in a walking, unproductive coma.

I’m Leaking Vitamin D..

I'm Leaking Vitamin D

I’m Leaking Vitamin D

As is typical with SjoDry, another day, another diagnosis. This time it seems that SjoDry’s vitamin D level has once again taken a nose dive below normal. Vitamin D deficiency seems to frequently be paired with autoimmune diseases…no ‘a la carte’ here. Unlike the all encompassing Sjogren’s fatigue I have, the Vitamin D seems like a gradually acquired state, like I have a slow leak of Vitamin D somewhere in my body. And then boom..the compounded Sjogren’s and Vitamin D deficiency join forces in building a fatigue monster beyond description. My mind and body stay in a zombie state unable to focus or be productive. Not to mention the number it has been doing on my hair, skin and nails.

Enter Mega Doses Of Vitamin D

Sadly, we Sjoggies get so accustomed to trying to function at this level of Sjogren’s exhaustion, it can be difficult to recognize a condition like a Vitamin D deficiency. Unless we happen to have a blood test that alerts us to our declining D levels, we just write our state of condition off as another Sjogren’s flare.

It probably sounds odd to most folks when a Sjoggie gets happy over the confirmation of a diagnosis. But let’s face it, most of us have spent years trying to get confirmation of what is happening to us, and may still be without a diagnosis. So if one of our tests or docs confirm anything by blood test or otherwise, we are happy. It is definitive. What is even more pleasing is if the diagnosis comes with a cure/treatment. Vitamin D deficiency has treatment which happens to work fairly quickly.

A Rare Sighting

In the last two weeks, SjoDry has experienced a substantial improvement in energy, thanks to mega doses of liquid Vitamin D. So much so, that she & others who know her, have witnessed miracle moments of mind clarity, productivity, house cleaning and even meal preparation for two. These productive moments have brought with them a positive giddiness that SjoDry does not exhibit in her typical coma state. Hey, I recognize’s the old me!

Clearly, Vitamin D deficiency can have a dramatic impact on one’s functioning. There may not be a cure for Sjogren’s, but there are solutions when our Vitamin D is out of whack. Perhaps, it is an illusion to think that SjoDry’s past several months of pure exhaustion was mostly caused by the vitamin deficiency or that she can maintain this satisfying level of productivity and energy…but for however long it lasts, SjoDry’s winning the drag race!

How’s your race going?

SjoDry and Cheering..


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Restless Sleep Syndrome

It’s Time

I’ve threatened to write about my sleepless nights on many occasions, and particularly after a night or ten without sleep. So here it is my fellow Sjoggie-mates, your fly-on-the-wall experience of a night with SjoDry.

I could sit here and list all of my painful and afflicted body parts & what they do at night, but I will spare you the part-specific drama. Anyway, I don’t even know you, but I do know that we as Sjoggie sistas & brothers share these same never-ending symptoms, such as pain, interrupted sleep, etc.

Sleepless In Pittsburgh!

Sleepless In Pittsburgh!

A Typical Night

A typical night of sleep starts downstairs several hours before bedtime. This is commonly referred to as the “couch collapse”, where SjoDry lands each day after work. Now I must tell you that SjoDry has an annoying issue. The issue surrounding SjoDry’s bedtime is that going to bed too soon, will inevitably wake her up in the early morning hours. Of course, it is too soon to be up for work, yet she is unlikely to get back to sleep either. And in the event that SjoDry has achieved a deep relaxing sleep and stays in bed too long, then she cannot walk the next day from the pain.

Rock N’ Roll

SjoDry’s “sleep behavior” can best be described as a night of Rock N Roll. Let me describe a visual of what this looks like for you. First, a few minutes on the left side–and then pain, roll right. A pillow fluff, a cover adjustment and next attempts at sleep. Uh oh, more pain, roll to middle on back, but get some water on nightstand first. Okay, nighty night..time to sleep.

Then SjoDry’s  mind which is still turned on and in planning mode reminds her that she still needs to pick up the prescriptions from the pharmacy the next day. Really, SjoDry, turn it off– it’s time to sleep. Another left roll. Maybe it will happen now.

Wait a minute! What’s happening with the pillow? Oh No! SjoDry’s wonderful and supportive husband has encroached into her designated Sjoggie space– and has borrowed some of her precious cover. Not happening.

The Maneuver

Hmm, time for a potty run. Then back to bed with a stealth, Sjoggie cover retrieval maneuver. Now let’s try this again. Enter..mental note of frustration: Great, it’s 2:05 a.m. & SjoDry has never gotten to sleep. Well, it’s got to happen soon. Roll right.

OMG, it’s happened! The face-to-face sleep positions. That is, SjoDry & Spouse are now facing eachother on their respective sides. Now don’t get me wrong..this arrangement will work on occasion. But what typically occurs, is a series of deep puffs of air blown right into SjoDry’s face (direct hit). It reminds me of a cartoon I once saw where the main character is blissfully slumbering & shooting a little feather into the air at each breath. Yes, SjoDry calls these: The Feather Puffs. After many years of marriage, SjoDry still thinks that this is cute & it always elicits a smile EXCEPTwhen she is trying to sleep. Roll Left.

Almost There

Finally, here it is, that vaguely familiar pre-fade state, almost asleep..when OUCH…SjoDry’s arm and hand is in numb & tingling. Work the hand & fingers, hang the arm off the side of the bed, clinch, clinch….potty run…water gulp..Roll right.

And Then There Is Snoring..

Of course, a night with SjoDry and spouse, typically includes some degree of snoring also. If I am being honest, both parties in this couple are guilty of this often loud behavior. But SjoDry would argue that spouse’s snores are especially loud and creative. So much so, that she has labeled some of them. For instance, SjoDry has identified one particular sound coming from her hubby as reminiscent of the legendary ” Wookie Warrior “, Chewbacca. Yes, this very distinct sound launches SjoDry right into an epic Star Wars scene. Sadly, SjoDry is giving snoring sounds a name instead of sleeping.


It’s “Chewbacca”

And sjo it goes, the cycle of frustration and sleep loss continues. Is there any doubt about why SjoDry attempts to function in a semi-coma state each day and complains that her fatigue never goes away?!

Now, if you’re tempted to suggest that SjoDry could try some sleep medication (which she does have a prescription for) don’t. Because sleep meds dry SjoDry’s head out so much that she can hardly breathe. When this happens, it is then necessary for SjoDry to place a towel on her head & hang over her warm mist humidifier in desperate attempts to clear her head….and as you can see, there’s not enough time in SjoDry’s night cycle for that.

Happy Z’s to you!

SjoDry and dragging..

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Depending On How Your Day Is Going..

Hi Fellow Sjoggies.. Sorry I have been a bit awol lately. Yes, I am still trying to come down from the clouds from our Rome, Italy escape. It seems that along with the handful of souvenirs that we brought back, I snagged a couple of Baker’s Cysts behind my knees. No doubt that I acquired them in my climb to the top of St. Peter’s trying to prove myself. Nothing that a good cortisone shot right into my knee cap won’t fix…or at least I hope it was painful enough.

I have been trying to play catch-up and dealing with a variety of stressors in addition to the typical medical fun stuff we all juggle every day. If I’m being honest…wait a minute…I’m always honest. I guess I my phrasing should read like this…I have found myself having  a few less than positive days. In fact, I have even had some serious snarling moments over these past several days. Who knows why, right?! It’s all of it…it’s my life & all of the good, bad & ugly that goes with it. I know you understand, because you have these stressful, and often amplified “daze of our lives” moments also.

Well, I came across something really neat in my internet travels yesterday that absolutely spoke to me and the message was pretty clear! I will share it here for you…and it really puts things into p-e-r-s-p-e-c-t-i-v-e!  Read it & let me know what you think.

Today was the absolute worst day ever

And don’t try to convince me that

There’s something good in every day

Because, when you take a closer look,

This world is a pretty evil place.

Even if

Some goodness does shine through once in a while

Satisfaction and happiness don’t last.

And it’s not true that

It’s all in the mind and heart


True happiness can be obtained

Only if one’s surroundings are good

It’s not true that good exists

I’m sure you can agree that

The reality


My attitude

It’s all beyond my control

And you’ll never in a million years hear me say that

Today was a good day

Now read from bottom to top.

SjoDry and Thinking..

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When In Rome

Back To Reality..

Venice...anyone for a Gondola ride?

Venice…anyone for a Gondola ride?

And so it goes, all vacations must come to an end. This is always a bit deflating and especially so when you have been on an amazing vacation. But as a follow-up to my last post, I feel an obligation to share. Note: When SjoDry shares, it can include an unabashed amount of gushing. Think: It’s my party and I’ll gush if I want to!

It is true that I was, as they say, on cloud 9.. (wonder where that expression came from) before even leaving. I was giddy with excitement, but also worried about how my Sjogren’s ravaged body would hold up. But low and behold, Sjodry came through it with flying colors. The good news is that SjoDry found out that she can still sweat. Only a Sjoggie would be happy about that, right!

Oh Rome, How Do I Love Thee..

You Will Know Them By Their White Tennis Shoes!

You Will Know Them By Their White Tennis Shoes!

Let me count the ways. Truly, Rome is beautiful and it would be hard not to fall in love.When in Rome, one is surrounded by architecture beyond compare, intricate statues/carvings and quaint cobblestone streets. But you better take your walking shoes! When doing my typical online research before going, I remember reading that the natives can easily pick out the Americans by their white tennis shoes. Others on that forum noted that the residents are not nearly as casual as the tourists who come to visit. I even read that the women and men who live there are always dressed in upscale casual attire. And the resident women are always in their high heels.

Well, let me just say this.. so what!! I did not not care if my shoes screamed my nationality or not. The natives are not walking several miles a day like we were. And apparently going to Rome in June brings temperatures that stay in the high 80’s with a healthy (or non-healthy depending on how you look at it) dose of H-U-M-I-D-I-T-Y! Yes, SjoDry’s cute little “Bob” hairstyle was lost, along with my energy. My hairstyle would not hold because of the humidity. I was forced to slap in a barrette on each side of my head to hold my hair out of my eyes. Now add in lots of humidity. In every picture SjoDry looked like a slicked-back German ‘Fraulein’. But enough about my obvious lack of American style.

My Goal..To Make It To The Top

St. Peter's Basilica

See the teeny, tiny people at the highest ring you can see in this picture. Well..let’s just say that this is the tiniest SjoDry has ever been :-)

Being very worried that I would drag the family down with my fatigue or pain issues, I wrestled with the idea of whether I would take on the challenge to make it to the very top cupola (dome) of St.Peter’s Basilica. I could just picture my family at the top while I sat on a bench somewhere at the bottom feeling angry at the criminal intruder in my life that is Sjogren’s.

I had already read that there were a total of 551 steps to the top. However, one could do a little cheat & take the lift (as they say in Europe) up the first 320 steps. But it would be necessary to walk the last 231 steps. Furthermore, the steps which started out as typically wide steps would get very narrow and lean to the right (this should really help my back pain, hmm). Oh, and by the way, there is no air conditioning and no room to change your mind. If you commit, then there’s no turning back.’s like this, (said with Sjoggie determination) if I can do battle every day with Sjogren’s, then I can and will do this! 

Yes, narrow & steep.

Yes, narrow & steep.

One person width on this spiral staircase...Can you say claustrophobic!!

One person width on this spiral staircase…Can you say claustrophobic!!

While I was incredibly exhausted and gasping for air, I was mesmerized by the spectacular view when I slumped through the door at the top. The view (with no exaggeration) was amazing and worth the sweatfest it took to get there. Almost as satisfying, was the fact that I made it. Did I pay a price for that view? Well, maybe. Since I have come back, I am having some very painful knee(s) issues that may include something called a Baker’s Cyst. But I am still very proud of myself for accomplishing a goal that I fully expected Sjogren’s to have probably robbed me of achieving.

People who levitate :-O

People who levitate :-O

On one day as we meandered around the cobblestone streets of Rome, we came across a creative “money-maker”. It was a man who appeared to be levitating. I found it humorous at first. I then decided that as a flaming Sjoggie, I could relate to this guy. Do you ever feel like this? Like I am spending day after day trying to hold myself up. The only difference is this guy is noticed with a smile by anyone who sees him. Sjoggies most often don’t garner even this much attention from anyone we come in contact with. But I must give him credit..he just sits all day with a can sitting in front of him for tourist photo ops. On the bright side, my Sjogren’s symptomology may still qualify me for this job.

Still Flying High and Smiling

We all anticipated that this would be the trip of our lifetime, and it lived up to that and more. It was a huge blessing to have our entire family together to share this very special vacation. We were able to visit our son Jon at the Embassy compound, and see the the shabby place he is forced to work in (a former palace). Once again, we were able to leave all our worries behind and create some fantastic family memories. Of course SjoDry now has the fun task of re-living every moment as she creates the scrapbook of a lifetime to go with the trip of a lifetime. 


This is SjoDry…Happy Happy Happy!

It Is My Hope..

that you, my fellow Sjoggie-Mates, will have an opportunity to create an equally memorable journey or experience like the one I just experienced. Aside from the memorable aspects of sharing a family vacation together, there is huge respite value from having such a relaxing and happy event. Yes, I was physically tired, but emotionally my heart was singing the entire time I was gone. I ran away from Sjogren’s and I loved it! I was able to lose some weight, and a little Sjogren’s emotional baggage ( in addition to our real baggage which was lost on the way home). It was beyond therapeutic and I am prescribing it for all of you!

Until next time, I remain:

SjoDry & Happily Reminiscing!

Veni, Vidi, Vici. ( I came, I saw, I conquered! )

Do any of you have plans for a Sjogren’s Escape? Please Share!

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