A New Treatmen In SjoDry’s World..

Dosing..As Much As Tolerated

As many of you may recall, I wrote a very sad farewell post in Feb.2014, to our wonderful dog, Wags, of 19 years. I went on to write about how much pets help us to cope with so many things, and they do. Not only do our pets help us to cope with chronic illness, they bring fun and comfort in many situations. They are truly our family members.

When it happened, our grown children assured us that it would not be long until we had another pet. Through the years, we had the joy of sharing our lives with cats, dogs, parrots & hamsters. Okay, I take that back..the hamsters were not a joy and had no redeeming qualities (though they did remind me of my never-ending exercise of searching for diagnoses). Think..mindless running in circles and never getting anywhere.

Wags Burkett

Wags

SjoDry’s Futile Declarations

I was adamant..no more bonding with pets, only to be heart-broken when they pass; no more potty-training or senior accidents on the floor to worry about; no more expensive vet bills; food & pet care; no more planning & pet-sitters to take a trip; no more, no more.

I was even starting to collect plush carpet samples for the new whole-house carpet we had been planning since moving in 3+ years before. Yes, we were truly ‘Empty Nesters’ with no ties or encumbrances to hold us back. Free at last…

It Was Inevitable.

Of course our daughter Kelsey, would periodically comment that Santa may bring us a surprise..And I, with automated perfection, would fire-back..Oh no…don’t you do that..I mean it..we are done! And I really believed it..at least for awhile. But the forces were against us. Every time we turned on the TV, we were assaulted with furry puppies doing cute things all while being fed the most nutritious food out there. And we couldn’t even enjoy a Hallmark movie without some precious holiday puppy sub-plot.

Ivy 1

Ivy…Look At That Face!

The Final Blow

The final blow came when after the recent blizzard hit the east coast. It only took one adorable picture of our niece’s cute dog moving through a 2 foot snow path, to launch me back into a memory of doing the same with our beloved Wags. And then it happened, I picked up my Ipad and did a search for Puppies For Adoption in Pittsburgh. I knew what I was doing and how dangerous it was. I knew that one ‘in person’ visit to just “look” at a puppy would do both of us in like a drug addict going after a fix.

The problem was that I found a precious face looking at me with two dark button eyes. What would one email inquiry hurt? Right? Was precious button eyes still available? No, was the answer, but his sister is and she looks just like him. We probably both knew then that we were starting down the path of no return.

I very feebly suggested that we should probably make a list of all of the pros and cons to make a smart decision. So we did. And as we might of guessed, quite logically, our “cons” list was longer than our “pros” list. So I said, what we were both thinking..if we go see this little 10 week old puppy, we are going to have a totally emotional response..the logic will be out the window. Of course, we had to go by the bank to have the adoption fee in hand…just in case.

Ivy 3

Ivy, Adorable Even When She Sleeps

The Rest Of The Story

As Paul Harvey says and you could have guessed…here’s the rest of the story. We now have a new family member. Ivy is a Shi-Chon (part ShiTzu & part Bichon Frise). The breed is called the Teddy Bear breed because they look like little Teddy Bears. Ivy elicits the same response wherever we go, OMG..look at her..how adorable! She is. She weighs a whopping half pound. So let’s see, does she qualify for being called a Sjogren’s Syndrome Therapy? I think yes. Pets make us happy, lower our blood pressure and make us laugh. So for those fun moments, we escape our Sjogren’s. Yes, that is a never-ending treatment I know I can always count on! I suppose I could even rationalize our mad dashes across the room to get her to the “potty pad” as some small form of exercise. Not only that, she’s hypoallergenic and does not shed. Let’s just say that SjoDry can rationalize Ivy in the same way she does her chocolate.

Ivy 2

Ivy…We’re In Love!

Here’s to cuddly, huggable puppies as a long-time therapeutic treatment!

See SjoDry Run…

Posted in HUMOR, Searching for Answers, Sjogren's Syndrome National Patient Conference, Support, Uncategorized | Leave a comment

SjoDry’s Having A Fit

Only A Small Fit..

Do you ever discover a gadget that you think is the greatest thing since chocolate? Okay…maybe not chocolate. I have discovered one such blog-worthy gadget that now lives in my SjoDry world. In fact, I wear it every day. It is my relatively new FitBit.

Now, I can’t say I love it for it’s beauty..because it is a black, chunky & sometimes hard to keep snapped, wardrobe accessory. I suppose that technically, it is a wardrobe accessory for fitness apparel and those who sport cute and colorful spandexy garments…(that leaves me out).

Fitbit

SjoDry’s New FitBit

Probably more than an accessory, a FitBit does indeed have specific functionality. I recently had an occasion to attend an event, where many of the women were employees of a health-conscious insurance company. Obviously, I sat down in the middle of a close-knit group of women who knew each other well. They began to discuss and compare the features and benefits of their differently colored Fitbits. One lady announced that she competed with herself daily to reach the coveted 10,000 steps a day goal.

The Goal

The Goal

Oh, The Benefits You’ll See

The other ladies agreed and another woman said that she really liked the fact that she could track her sleep. Hmm. My ears perked up a bit. As you know, SjoDry rarely has a full night’s sleep to brag about. The woman went on to say that she could actually print out these personalized sleep reports. I’ll admit it sounded intriguing. I mean I don’t need a printout to confirm that I sleep poorly every night. But it could be a worthwhile variable to monitor & keep in “the health book of SjoDry”. Note to all Sjoggies: For any of you with doubting physicians who think you are prone to exaggeration..a Fitbit can provide you with a printout of your sleep patterns to reinforce what you have been telling your docs for years now. 

Sleep ? Report

Sleep ? Report

So I did it. I splurged and bought the FitBit. I have not chosen to dive into the world of other FitBit wearers in comparing fitness notes and flaming calories on Facebook and social media, but I do like getting my weekly (or nightly if I choose) sleep report. It’s official..I am currently averaging 2 hours 46 mins. of sleep a night..no wonder I feel like a Zombie. I am not in great competition with myself to surpass my fitness performance on any given day. Heck, if I’m moving at all..it’s a good day. And as for hitting 10,000 steps in one day, it has happened twice and each time, my Fitbit scared me to death. It started buzzing like a tens unit embedded in my arm to congratulate me on finally making it to 10,000 steps in one day. I find it ironic that my congratulatory buzz feels like neuropathy.

On The Plus Side.. I think

I have also discovered an additional side benefit (and slight annoyance) for my new wrist companion. With my frequent memory lapses and Sjogren’s brain fog, I appreciate that I can push the button on my Fitbit to remind myself  of what the date is. Now I don’t know if SjoDry’s just special or all Fitbits are highly reactive at the slightest movement..but when moving my arm at certain angles (walking or lying), the Fitbit suddenly lights up like a motion detector that’s spotted an intruder. I can appreciate this when I am walking in the dark to see where I’m going or trying to avoid another fall down the steps. But when simply changing sleep positions, this super-power beam of light can serve to annoy the better half. I mean, on the one hand, I am envious of my husband’s ability to fall into a deep, restful slumber on a dime. But I would never choose to ruin it for him by shoving a blinding light into his eyes. So now I find myself randomly trying to capture this beam of light under the cover, like I used to chase lightening bugs as a kid.

In any event, if you see any future posts that feature the title: SjoDry’s Having A Fit ..you will know that it is not a SjoDry rant..just her newest gadget.

May the sleep be with you in 2016!

SjoDry and Snoozin

 

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Holiday Spirit vs. Holiday Energy

Do You Have It?

131104_HOL_OhTheHumanity.jpg.CROP.promovar-mediumlarge

 

It seems to happen every year, no matter what I declare the year before. That is.. this year I’m going to get everything done ahead of time so I can enjoy the holiday. Ever said that? The problem is that Sjogren’s and all of my other annoying afflictions have different ideas.

I remember when I used to look incredulously at early retail and residential Christmas decorations and advertising with head-turning judgement. I would say to myself (or whomever I might be talking with), “Geez, can’t people just enjoy the Blessings of Thanksgiving without fast-forwarding past it to Christmas?”

But a funny thing happened. Our kids moved away, I got older, sicker and ridiculously fatigued. Being the Christmas decoration freak that I am, the process ended up being a several day process. I realized that if I was ever to enjoy the season without total stress the entire time, I needed to get things done sooner (and when our daughter was home to help). It has now become a tradition to “get Christmas decorations done”, the day after Thanksgiving. And the truth of it is that I really enjoy our Mother-Daughter (and reluctant husband) tradition. As far as putting them up after Christmas, well…no one ever enjoys that. Maybe this year, I will finally downsize everything when I neatly organize and store them. Right (said with a “sure you will” tone of voice).

Deja Vu

sick and tired girl. jpeg

 

One thing I can always count on is that my immune-deficient body will supply me with at least a few respiratory events at any time, including the holidays. In the past few weeks, I have been dragging with my latest lung attack. And then it was suddenly last week. It’s like I popped out of my coma and realized that Christmas is less than two weeks away and I had not done any Christmas shopping.

I made it out to shop last Saturday with all of the holiday enthusiasm I could muster. But by the end of the day, I was shot with little to show except for a snarling attitude about parking, walking and back pain. When I got home and collapsed on the couch, I grabbed my Ipad to start my online Christmas shopping. This is pretty much where I have remained for several days. It has also become apparent that my shopping delay has resulted in paying an arm and a leg for shipping to get the gift to my house in time to go into another box..to pay another arm and a leg to get it to it’s final destination before Christmas. Yes, folks the cost of illness is more than retail.

Credit Card Fire

flamecardjpg

 

After 3 separate trips to my purse to obtain my flaming credit card (having thought I was already done with it), I told Steve, “This Christmas shopping is wearing me out”. He laughed like I was joking. So body dysfunction aside, the other thing I can always count on, is my determination to find the exact perfect gift for each person which we buy for. The truth of the matter is that I really enjoy shopping for people. I truly derive great joy in giving to others. That never changes for me, no matter how I feel. For that, I am thankful.

Experience The Season

It is my sincere hope that this season fills you with the spirit of the season and the energy to enjoy it. We spend so much of the time in our lives feeling sick and being chronically ill, that I think it is easy for us to lose sight of some of the simple joys and blessings that we receive. For at least one day of this holiday season, I would urge you to take some quiet time to reflect on what is truly important and the many blessings in your life which have nothing to do with “things”.

 

Wishing you all a wonderful holiday surrounded by the people who mean the most to you.

Merry Christmas or Happy Holidays everyone.

SjoDry and Thankful

Posted in HUMOR, Random, Support, Uncategorized | 1 Comment

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 value..is 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.

SjoDry

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’s..it 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

1_hope_quotes_love.com_

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

Sjoggie-Mates..like 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!

kilauea-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 her..it’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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