Another Day, Another Diagnosis

I have often said that Sjogren’s Syndrome is the gift that keeps on giving. I don’t know about you, but I’ve noticed that I have fallen into this..“because of Sjogren’s” rationale for everything physical or medical that happens to me.

Either wrongly or rightly, I have found that Sjogren’s gets the blame. Of course I have another significant diagnosis of CVID (Common Variable Immune Deficiency) that has been with me far longer than Sjogren’s has. As I grew up, it never occurred to me to research any of my medical issues.

I just dealt with them (or more accurately..my Mom dealt and paid for them). Being ill has been my normal for my whole life. I suppose that’s why I have a sense of humor about my never-ending, “kill me now”, “she’s always sick” saga.

Like I Need Another Problem (Said With Snarling Irritation)

So here it is folks..Obstructive Sleep Apnea. I know, I just wrote about this a blog post or two ago. It’s just been confirmed at this point. When the doc suggested a home sleep test, I was thrilled. This is easy. Do the test in the comfort of my home & mail the (already postage paid) unit back when done. And for the most part it was easy.

Of course my autonomic dysfunction (Thanks to Sjogren’s) kicked in like a woman in the throes of a menopause whole body sweatfest and drenched my gown. But because of this piece of pie, easy home test, I could not change my pj’s & disrupt the test. It felt like I was wearing a wet, soggy full-body diaper.

I suppose that it never occurred to me that the doc would order the real ‘in lab’ sleep test with all of the bells & whistles. I am lead to believe by those who have already experienced it, that I can count on a night of little sleep and lots of interruptions. For me, that means same night, different location.

 

Oh, The Choices You’ll See

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I am back to research drawing board. This time I am trying to learn about CPAP & BiPAP masks. Because of my Sjogren’s affliction, I am particularly concerned about my choice in machines and masks. I have spoken to a few Sjoggies who mentioned that a CPAP (meaning continuous air) dries a non-Sjoggie out quickly. Oh my. Can you imagine what that will do to an already dried out throat & nose?! One person said that she had a problem with the seal causing air to blow into her eyes & quickly dried her eyes out.

Time For A Sjoggie Shout-Out

For those of you who have already lived this fun, please share. Have you found a mask that works especially well for you? I have to admit that with my fatigue and level of sheer exhaustion, I have high hopes for this mask & machine.

Let’s see if we are trying to determine the absolute best mask in our Sjoggie world, what would it look and function like? Of course it needs to be easily removable to accommodate all of our trips to the restroom, as well as our bedside table hydration needs. Must not dry us out worse than we already are (I’m already laughing on the floor). Must not add any pain to our Sjogren’s ravaged bodies. Must not add any peculiar sensations to those of us with neuropathies. Must be easy to adapt to, so as not to interrupt our already sleepless nights. Must allow for those of us who rock n’ roll every  night, full freedom of movement. Hmm. Have I left anything out?

category-womens-cpap-masks

Now normally, I am immediately drawn to the girly pink color mask & the like (sucker for gender marketing), but for this choice..I am looking at form & function before cute.

I know I can count on my Sjoggie-Mates to help me out here. You know that when I mention Show-Grins to a CPAP/BiPAP supplier, I am going to receive the same blank stare we get from various health providers..right?!  So come on now..help me out. Brands, styles, helpful tidbits…all personal Sjoggie input is welcome here.

There Is One Silver Lining

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There is one silver lining here..because of Sjogren’s, I have made some wonderful Sjoggie friends and connections. That is the best gift of all.

Looking forward to hearing from you.

SjoDry and Searching

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Is This A FLARE ~ FLAIR?

Okay,  it’s time for a spelling reminder. I am a regular visitor to the Sjogren’s World Forum & other forums related to my medical conditions. It seems like at least once a week I see this headline..Is This A Flare/Flair?

I used to be a wonderful speller and would have never needed to remind myself of how to spell a word..or needed to look up which word with the same sound but a different spelling, meant which concept. But sadly, I did just that this week.

I will start by refreshing your memory (if it works like mine).. Flare = Burn with sudden intensity, while Flair = A natural aptitude or ability. So there we have it..when referring to our sudden Sjogren’s body uproar manifesting in our joints, or whatever body part it has decided to attack., we use the F-L-A-R-E spelling/meaning. So while it would appear that SjoDry has a “flair” for chronic illness, it is actually just a severe immune deficiency which caused autoimmune conditions with periodic flares of increased activity. Simple right?!

computerflare

Does Anyone Really Know?

Not only do I question my spelling of it, I have decided that I don’t think I even know what a flare is as it relates to my own Sjogren’s Syndrome. And I am not sure that many Sjoggies know either, since they continue to ask the question. The issue is that Sjogren’s manifests itself in everyone differently and to varying degrees. In my experience, the disease presents every day, like a bad roller coaster ride that never ends.

My day-to-day symptomology is all over the place. Some symptoms (like eye irritation, nose dryness or desert mouth) have variability in me, while other symptoms like FATIGUE and PAIN just seem to move in one singular direction. Down ~ as in, to the the floor or bed as a result of my fatigue. And UP ~ as in pain intensity.

Perhaps there are Sjoggies out there who recognize a pattern of Sjogren’s functioning in their lives and can identify this phenomena we call a “flare.” In fact, some may even be able to pinpoint a trigger to these flares. And then there’s me. I just seem to stay in this fairly constant window of crappy functioning that never goes away. Think ‘treading water’ while in lava.

The MED-EVIL Conditions Have Joined Forces

Get out of flare free card

Of course I must consider the fact that my functioning may be totally different than others who do not share my co-morbid medical conditions. For instance, my immune deficiency and my autoimmune issues both cause some of the same symptoms. I suppose it is possible that my symptomology could be more intense than someone who does not have multiple diseases with similar symptoms.

And even while I do share some of the exact same conditions as a couple of the Sjoggies on the Sjogren’s World Forum, we are still not affected to the same degree with our symptoms, or level of functioning, or lack thereof in my current state.

All Flares Are Not Created Equally..

Or are they? The reality is who knows. Of course they are subjective. Pain and symptomology are in the eyes of the unfortunate beholder. To the individuals who experience them, they don’t get any more real. And none of us would wish our chronic illness or the flares that go with them, on anyone.

For me, I don’t see distinct periods of symptom intensity as a flare, as much as I see it as just a part of the hills I climb on my daily roller coaster ride. I can’t put my finger on a starting and stopping point of pain or symptom intensity, which it seems like a flare should have. Even with the dips and valleys of my daily ride, there is no significant deceleration or lessening of my symptoms and all of their effects. So I guess that it depends upon your definition of a “flare” and what that looks like in your Sjoggie world.

The Ride That Never Ends

Sjogrens Syndrome roller coaster

I suppose that just like the scenery on a roller coaster ride, my chronic illness is one big blur. Occasionally, I see parts and pieces of the old me, with dashes of brightness and darkness. I never know whether a storm is coming, a machine malfunction or what’s around the next curve. But good, bad or ugly, I am on the ride of my life.

I’m ready to get off of this ride, how about you?

SjoDry

 

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Blessings

Reflection

Praying Hands

There is a good reason (or a handful of them) why people say that religion and politics are topics to avoid in every day conversation. I think it’s a good rule of thumb to live by when few topics can ignite such heated exchanges in the way that politics and religion do. If you don’t believe me, just turn on the tv and listen to the day’s presidential candidates’s war of words.

So at the risk of upsetting someone, I am treading on a potentially volatile topic today. Like millions of other people, we just celebrated the holiday of Easter. Easter represents a foundational belief in the Christian Faith. That belief, is that through death, burial and resurrection, Jesus paid the penalty for sin, thus purchasing for all who believe in Him, eternal life in Christ Jesus.

To Each His Own

American and Marine Flags

Regardless of what you believe in your faith or which faith that may be, in America, you have the freedom to make that individual choice. I think that sometimes we often forget how critically important that fact is. Between the Easter Egg Hunts and Church services, did you happen to hear that there was an explosion in Lahore, Pakistan on Easter Sunday?

That explosion was 7 miles from where our son, an active duty Marine is stationed. As he and his fellow Marines stand ready behind the large walls of the U.S. Consulate in Lahore, I am painfully reminded of all of our service people’s daily sacrifices for all of our safety.

Ironically, while we were in our churches giving thanks, hundreds of people were bombed celebrating their Christian faith in Pakistan. I get that there is evil in the world. But it is almost beyond my comprehension to understand how this evil and hatred can lead others to kill people for their beliefs. As we enjoyed our families, our food and fellowship, scores of mothers, fathers and children were irrevocably changed in Pakistan…just because of a celebration of their Christian faith. Is is so sad and senseless. This barbaric act will continue to happen unfortunately. For the most part, it is easy for us to remain distanced and not spend a lot of time thinking about it..until it happens to (or close to) your family.

The Irony

Isn’t it ironic that these jihadists have chosen to kill themselves (and many others) in the name of their faith & for their allah..simply because of Christians and their personal Christian faith. I am thankful that I can worship in any way or faith that I choose to. I am thankful that the God I worship doesn’t want me to go prove my faith by killing others who do not share my beliefs.

SJ-Faithclosepins

The Freedom To Search For Answers

While this is not my typical Sjogren’s blog post, I hope it will serve as a reminder of the freedoms that we still enjoy. It is very easy and pretty much unavoidable for we Sjoggies to get caught up in our day-to-day functioning and our search for medical answers. It consumes a great deal of our life whether we like it or not. We’re tired and we don’t feel well…but we are alive. And we have the freedom to see doctors and seek treatments. And yes, Sjogren’s has altered my life in negative ways that may remain permanent, but it cannot ever shake my faith! Typically, I would not write about this topic, but I just found myself reflecting not only on my son’s safety, but our world’s safety and freedoms.I will apologize if I have offended anyone in writing about this particular topic.  But I am thankful that it is my freedom to do so.

SjoDry and Thankful

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Just Breathe Normally..

Hmmm.

A few years back, my husband was urged to have a Sleep Study. The physician wanted to see if my husband might have Sleep Apnea. What is Sleep Apnea I asked? According to the NIH, Sleep Apnea is defined as:

Sleep apnea (AP-ne-ah) is a common disorder in which you have one or more pauses in breathing or shallow breaths while you sleep. Breathing pauses can last from a few seconds to minutes. They may occur 30 times or more an hour. Typically, normal breathing then starts again, sometimes with a loud snort or choking sound. Sleep Apnea usually a chronic (ongoing) condition that disrupts your sleep. When your breathing pauses or becomes shallow, you’ll often move out of sleep and into light sleep. As a result, the quality of your sleep is poor, which makes you tired during the day. Sleep Apnea is a leading cause of excessive daytime sleepiness.

I don’t know, is it just me? It seems like everyone I talk to these days has this diagnosis or is about to. Of course with my husband’s Afib heart condition, I was in full agreement that he should follow through. He did so & was diagnosed with Obstructive Sleep Apnea. He was fitted for a CPAP mask, that Bless His Heart…looked like a cross between Snufflelupagus and Hannibal Lecter from Silence of the Lambs.

Snufflelupagus     Hannibal b & w

It was quite a large production to fill the water into the machine and then put the entire contraption on. If we didn’t get our goodnight kiss in before the routine, well..we missed our chance. And by the way, we need to have all talking completed before the mask is put on, as he is unable to speak or hear once he’s strapped into his mask. Clearly, this is not a process that anyone wants to repeat more than once a night..and for many, not even then. And if you have a bladder matter that requires frequent trips to the potty..it could still be a long night.

Did It Work?

Well, the answer is..I think it works..if one can tolerate the mask. By design, the mask is so tight with pressure, that no air could possibly escape or sneak in (unless intended to.) I could see an improvement in my husband’s sleep, but admittedly feel sorry for him in having to wear this funny-looking contraption each night. I feel even worse for him each time that he removes the mask to reveal a pale, colorless suction-cup shaped, impression around his mouth. It reminds me of when our daughter was young (and like all kids) went through a period of licking her mouth until she developed what I call “clown mouth”.

To be honest, I have thought to myself and even whispered to a few friends, I feel sorry for him…I KNOW I could never wear a mask like that. And to be clear..what Sjoggie could? We are already dry enough without assisting ourselves into choking mode, right!

Sjodry-sleep-study

On several occasions, my husband has pointed out to me that he is sure that I likely have Sleep Apnea because of the way I wake up with sudden loud gasps for breath. And with my ridiculous fatigue level, he could be right. In fact, at my Pulmonologist appointment last week, my doc suggested that I have a sleep study. I explained to him, that while I think it is a good bet that SjoDry does indeed have Sleep Apnea..I have avoided pursuing it, because I don’t need any assistance in worsening my dry mouth at night, and that is my biggest concern.

Here’s the rub..if I am going to go in to see my doctor and complain about my lava-resembling fatigue, then I can’t poo poo the suggestion to have a sleep study to see if this could be a contributing factor to my lack of sleep each night, and my all-encompassing fatigue each day. What is it that they say? You can’t have it both ways. So my appt. with the “sleep doctor” is on the calendar.

Even my Mom is going through the same process and in search of the perfect, or should I say, tolerable CPAP or Bi-PAP mask. While part of me feels like Sleep Apnea is the new “designer” disease created for the purpose of selling expensive face masks, the researcher part of me..says that the medical explanations, diagrams, videos and possible serious consequences of ignoring Sleep Apnea, do make sense. In fact, I had never really thought about Sleep Apnea as a very serious problem (at least in comparison to the rest of my medical issues.)

The Good News

The good news is that I have been researching the huge variety of face masks available. Of course, one’s individual Sleep Study results vary in terms of which mask may be most appropriate for them, but there are what appear to be tolerable masks with warm humidifiers in the same unit. Many Sjoggies, myself included, require the use of a humidifier each night anyway.

After asking the question about Sleep Apnea masks on the Sjogren’s World Forum, and talking to other Sjoggies I know, I am feeling less anxious about my possible/probable need for one.

The Bad News

The bad news is that they say that when you have been married a long time, you start to look alike. But matching CPAP masks is not what I envisioned.

his and hers

Here’s to fresh oxygen..All Night Long!

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May the Oxygen be with us!

SjoDry

 

 

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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…

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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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