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

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..

Posted in HUMOR, Random, Symptoms | Tagged , , | 2 Comments

PERPSPECTIVE…

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 works..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

Because

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

Creates

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. Okay..it’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. 

SjoDry

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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Don’t Forget The Passport..

And The Countdown Is On..

The Colosseum with Fireworks!

The Colosseum with Fireworks!

Remember the old song…” Leaving On A Jetplane “? Well, my bags aren’t packed and I am not quite ready to go. Literally, that is…in my head however, I departed weeks ago. When our son became a Marine Embassy Guard and was assigned to the Embassy in Rome, Italy, we were both relieved and thrilled.

We did not expect that he would land such a peachy first assignment and expected to have a year or two to save for what we hoped would eventually be a vacation-worthy location. So off we launched into what has been a manic saving of vacation funds. Yes, every extra penny has been earmarked for the ” Rome fund “ for many weeks and months. This trip will include a celebration of my birthday (June 1st, the first day we arrive); a May 23rd Anniversary; the Mother’s Day that I spent in a coma: and several other upcoming holidays thrown in for good measure.

Sistine Chapel

Sistine Chapel

Just Around The Corner

And now here it is 9 days until take-off! And I have to tell you, the truth is.. I am just PLANE nervous, and not because I’m scared of flying. About what you ask? Well, let me count the ways: You may remember that I have a severe immune deficiency which has manifested itself by plaguing me with a lifetime of sinus & respiratory infections. I began taking IVIG infusions about a year and a half ago. They worked well for about a year and I did not have any infections for awhile. But something has changed. I have gotten 3 very challenging infections since December. The most recent one (Pneumonia) arrived as my gift for Mother’s Day. My husband & I  also recalled that on my last two plane rides, I have gotten a terrible infection almost immediately after being on the plane (typically in time to ruin my trip to wherever it was that I had just arrived to). So I have begrudgingly agreed, that wearing a nose/mouth face mask will be needed for this LONG international flight. In a recent airplane trip last month to the Sjogren’s Syndrome Patient Conference, I tried out my new mask. My appearance with my eyes peeking out from over the top of the mask silently screams…’Wonder what kind of cooties she has’? It is what it is…I don’t dare want to take a chance of getting sick on my gourmet vacation. I even ordered some stylish pastel floral, ear loop masks.

I Remember When…

All I had to do was narrow down my choice of vacation outfits, jewelry and shoes and hope it did not exceed the weight limit. Sadly, it has become an anal list of  trying to anticipate & purchase every aid I will need for my broken-down body parts. For instance, my new CANE SEAT. I do not typically walk with or need a cane. However, I have been experiencing a huge amount of pain in my back and neck from both my autoimmune neuropathy and my diffuse bulging discs which are pressing into my spine (according to a recent MRI). So I came up with the brilliant idea of purchasing a cane seat.  After spending a ridiculous amount of time and consideration of every cane seat that is manufactured and featured on Amazon.com, I made a decision. I chose a rather sporty-looking option that features cute, colorful bubbles on a black background. It does not look too medical & will likely match any outfit I choose for the day. It weighs only 2 lbs. As I read the directions, it made me laugh. For safety & stability sake, I must sit on my new purchase like it’s a hobby horse. Yee-haw, where’s ma cowboy hat ya’ll?! But seriously, I know I will be the envy of every equally back broken tourist there. And with my flaming back, I won’t care what anyone thinks!  Hey..if the seat fits…ride it!

SjoDry's "Old Lady (yet fashionable) Cane Seat"

SjoDry’s “Old Lady ( Yet fashionable) Cane Seat”

Which brings me to riding and the very long flight..

Let’s see around 8 hours or so to Paris and then another 2 hours to Rome. Can you say…Oh, my aching back! No worries. I’ve already planned for this. SjoDry found a Samsonite matching Memory Foam neck pillow & lumbar wedge to combat the discomfort of those economy plane seats. Just once, I would love to be able to afford the luxury of first class seats that flatten into a bed…and I may some day…just not to Rome and probably not in this decade. Of course..SjoDry is always like a hyperactive child on a first flight. I don’t sleep. The last time I gave it a serious try, I was stopped in my sleepless tracks by the man next to me who decided to work on his laptop all night with it’s bright penetrating light. The glare from his computer was almost as bright as the glaring look SjoDry was giving him. Good news..I have planned for that too. I found and purchased a solid black, molded eye mask. I was rather tickled with my purchase as the eye coverage part does not actually touch your eyes/make-up. It seemed like the perfect purchase until I tried it on & Steve told me it looked like I had a Victoria’s Secret Bra on my eyes. Between my eye mask & the protective nose/mouth mask, I resemble some kind of creepy figure who lurks in the shadows.

Plane Entertainment..

earbuds

Of course, I always enjoy the fairly current movies that are shown on international flights. What I don’t enjoy however, are the flimsy, painful ear plugs that are handed out from the flight attendants. I don’t recall if I had to pay money to have the privilege of using them. But I certainly had to pay a price from the ear pain. I think I spent a good portion of the trip trying to wrestle to keep the darn things in my ears. Inevitably, one of the ear plugs is static-ky or somewhat distorted. Well no worries for me…SjoDry found a hot pink set of Ear “Buds” that promise a noise reduction feature & appear to have the same design as many of the pricey competitors next to them. That is, I am hopeful that they will fit comfortably in my ear for my listening pleasure.

And The Research Says…

SjoDry researches EVERYTHING and this trip is no different. I have read Rome Forums; Fodors & Rick Steve’s Rome, Italy books, and on & on. On one particular forum in which I was reading, a woman who had just had her hip replaced, asked about the ability to walk in the Catacombs & did the folks handing out the advice on this forum, think that she would be able to handle that. The response was that she might want to take a flashlight and also that it was incredibly hot & humid & she might want to take a fan. A FAN!! That’s it..Rome in June is crazy hot. SjoDry is going to be ready. So back to Amazon.com I headed to compare personal fans. And I found it. A fan with many positive ratings. Of course my macho Marine son & former military husband don’t require such fans. They will just sweat & suffer as most men do. So I ordered a little mother & daughter fan action. After putting in my double-A batteries yesterday, I must report that this little fan may be my best trip purchase. It has 3 speeds & puts out an impressive amount of cool air. Not only that, I can wear it around my neck blowing at the perfect, strategic angle right at my face. I can even use it on the plane to blow away any germs coming my way.Personal fan

Of course I always purchase the miniature travel sizes of bathroom essentials; hair products and the like. Steve & I both made a trip to the shoe store to purchase comfortable walking shoes that we have been breaking in. Sadly it was necessary for  SjoDry  to find shoes that would accommodate her custom orthotics. And guess what, now we both have shoes that also have memory foam. Now granted, my neck and lumbar pillows & shoes are the only things that will have any memory for this trip as far as SjoDry’s brainfog & memory-challenged mind is concerned, but I have two good cameras to document everything else.

Don’t Forget The Pharmacy.. vector pill bottle

My prescriptions have crept up just like my age. I have been busy re-filling the meds in anticipation of the trip. The last time I packed them, I decided to throw in all of the bottles instead of using ziploc bags (my usual plan). I am not sure how much extra weight I added to my suitcase, but that was not a good idea. I think I will be leaving all of the supplements in their larger bottles at home. If my suitcase is going to be challenged to it’s maximum capacity, it will only be because of my wonderful Italian purchases.

It’s Worth Every Anal-Planning Moment..

old-lady-with-cane

Yes, a vacation takes a lot of planning that the Matriarch of her family typically has the pleasure of doing (If you think that is a stereotype I am making, prove me wrong). But it is worth it. I have no complaints, only excitement. I am already planning on making the ultimate scrapbook to re-live our trip for years to come. I worry that some of my chronic pain and fatigue will slow the family down, but I have tried to plan for everything that I am able to. SjoDry wants to go, go, go at the same pace that our family has always enjoyed on our family vacations together. With grown kids who have moved away and the rare opportunity to have a family vacation t-o-g-e-t-h-e-r, I want to soak in every moment with joy and without interruption.

Until Next Time…Ciao Baby!

Here We Come Rome!!

Here We Come Rome!!

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I Have Sjogren’s Syndrome and I Am All Alone

THE MESSAGE WE RECEIVE..

FROM DOCTORS..

A Doctor or Two or Three Has: Spoken, Said or Treated You:

  • As if you are a hypochondriac
  • You’ve mentioned more than a few symptoms, time’s up
  • Don’t you think you’re spending too much time running from doctor to doctor
  • You really need to stay off of the internet
  • Live with it
  • Perhaps you should consider a counselor

FROM FAMILY..

  • Well, you look just fine
  • I’m tired/have that too
  • We all have days like that
  • If you’d just get out and exercise, you would feel better
  • You don’t look sick
  • You need to be more positive

FROM FRIENDS..

  • Yes, _______has the same thing, and she is doing great
  • I’m sure things will get better
  • It could be worse
  • Disease is all in your mind
  • You should try this amazing herbal remedy/supplement_______
  • Have you lost weight, you look great

The above comments are just a small sampling of what Sjogren’s Syndrome Patients hear on a daily basis. While some of these sentiments may be well-intended, the result just adds to the alienation we already have and continue to feel from a large number of people who cross our daily paths. It is not uncommon to feel lonely and as if no one really understands the full spectrum of what Sjogren’s brings to our lives. Unless you walk this unpredictable and painful journey each day, do you really have any comprehension of what we have been robbed of? Or worse, what we are left with?

The reason that I decided to bring this up today is because I once felt very much this way and for quite a long time. I am happy to say that I have moved beyond this familiar & frustratingly lonely emotional place (at least most of the time).

I would however, like to point out one of the most effective prescriptions that I came across which helped me to move beyond these feelings was discovering the Sjogren’s Syndrome National Patient Conference.

With all of my never-ending doctor’s bills & copius patient symptoms, I was not sure that I could even swing the travel & conference costs to get there, but decided to try anyway. That was two years ago.

I am so glad that I went to that conference. I arrived at the conference feeling like the alone & alienated patient that I described above..but I left as an empowered and happy person.

Knowledge, education and being surrounded by 400 other patients who totally understand and have experienced all of the symptoms & sentiments described above, cannot help but to reinforce how we perceive ourselves and our experience with this Sjogren’s journey.

As I prepare to attend my third Sjogren’s Syndrome Patient Conference, I am urging every Sjoggie that I know and those Sjoggies that I don’t know, to make it a priority to attend this conference. We all need the only kind of therapy that can be received by attending a conference with our fellow Sjogren’s Syndrome kindred spirits.

For more information regarding the upcoming 2015 Sjogren’s Syndrome National Patient Conference in Tampa, Florida, please visit:

https://www.sjogrens.org/home/get-connected/patient-seminars

If you decide to come, please make it a point to introduce yourself. I will be the one with dry eyes, nose, mouth, hair, skin & sinuses. Oh wait a minute…that’s all of us.

Have a Sjogren’s Foundation member point me out.

Sjoggies Unite!

Sjoggies Unite!

May the moisture be with you!

SjoDry and counting the days..sure hope to meet you there.

Posted in Searching for Answers, Sjo Sad, Sjogren's Advocacy, Sjogren's Syndrome National Patient Conference, Support | Tagged , , , | 3 Comments

SHE’S ALIVE!

SjoDry Survives..

It is with great relief that I can report that SjoDry did not hear the “L” word (Lymphoma). I can always look back at my previous blog posts and tell exactly how I was feeling when I wrote them.

Usually a one word descriptor like: depressed, frustrated, angry, stuck or some such visual describes how I was feeling on the day I wrote the post. In my last post, I would call that my “scared” or “fear” post.

Yes, I was shakin in my uncomfortable shoes about my upcoming bone marrow biopsy. I don’t like pain (who does) and anything I had ever heard about bone marrow biopsies reinforced that fear. I was surprised that the gal who was performing my test allowed my husband to sit in and watch the whole thing. She did make him sit in a chair in the event that he would pass out. I was well positioned in the bed in case I passed out.

Something I wish to never experience again.

Something I wish to never experience again.

15th Century Drill

15th Century Drill

And as I feared, the entire thing was very painful during the actual procedure and for one week after. Steve reported that the instrument used to perform the test looked like an “Auger” (a tool used for boring holes into wood or the ground). I would have described it more like an ancient torture device. It just does not seem right or that people were meant to be drilled into. It definitely gives new meaning to ‘boring into one’s soul”  :-/

SO WHAT’S THE VERDICT?

Who knows is the short answer. You all know how this journey goes, right! All I can say at this point is that the biopsy they did, does not indicate Lymphoma that they can see at this time. And I am truly grateful for that blessing. We are all so used to chronic: (illness, pain, appointments, doctors, tests, bills, fatigue, symptoms ad nauseam, etc.) that it easy to miss some of our blessings when they happen. And they are blessings no matter how they arrive or what size they come in.

ALLOW ME TO SHARE..

I am so excited about one recent blessing that I simply must share it with you! (Think giddy). As I have mentioned to you before, I (along with a wonderful friend of mine), co-lead a Sjogren’s Syndrome Support Group in Pittsburgh, PA. Our official group name is: Sjoggies In Pittsburgh (SIP). A few months back, I was contacted by a reporter from one of the local newspapers. She told me that she writes for a quarterly magazine which is inserted into the newspaper. The Magazine is called, Caregiver Magazine. She explained that she wanted to write an article about Sjogren’s Syndrome, could she interview me?

You bet..I would love to share all of the dry details with you. So we discussed Sjogren’s and she also interviewed my doctor, who happens to be starting a Sjogren’s Syndrome Clinic in Pittsburgh. The article was just recently published on Feb.17th.

As I write, we have now gotten 5 new members for our group. But what really excited me is that two women who read the article, have chronic conditions & Rheumatologists , with no Sjogren’s Syndrome Diagnosis. In the article, it described the many symptoms that we have, how they come & go and that there are surely many people walking around with Sjogren’s, who don’t even know it, etc.

When the 2 women read the article, they immediately recognized themselves. You know, the famous ” Ah Ha “ moment of revelation. One of the two women lives in Philadelphia and was just here for a short visit with her parents and happened to read the article. Both women will be going back to their docs armed with Sjogren’s knowledge in an effort to pinpoint whether they do indeed have Sjogren’s Syndrome and even more importantly…getting treatment!

Yes, it was only two women…but just think about how awesome it would be if we can get our doctors & medical professionals and the public-at-large educated about Sjogren’s.

IT’S STARTING TO HAPPEN!

There is already an unprecedented amount of research being done on Sjogren’s Syndrome at this time. My doctor is very excited about what is happening in the medical research world of Sjogren’s Syndrome. The more that ALL medical professionals are educated about Sjogren’s, the more tests, research and improved treatments that will be developed to treat Sjogren’s sufferers!

I don’t know about you, but that really excites me. I consider it a BLESSING that two women who were unfamiliar with Sjogren’s may now get the treatment and answers they need to provide them with a better quality of life, and all because of one little ole article! Now..if we can just duplicate that in every city and state, we can not only get the word out in a BIG way, but we can really make advances in fighting the good, albeit VERY DRY, Sjogren’s Syndrome fight.

So let’s see, should I call this my “excited” or my “hopeful” blog post? Call it what you will, but anything that can advance the knowledge and awareness of Sjogren’s Syndrome not only helps those two women, it helps all of us. So their blessing, is my blessing, is your blessing!

Here’s to ALL of us getting the word out about Sjogren’s (pronounced SHO-GRINS..haha) Syndrome! This is commonly known as a call-to-action. Hint Hint.

SjoHopeful :-D

Posted in And the research says..., Random, Searching for Answers, Sjogren's Advocacy, Sjogren's In The News, Symptoms, Uncategorized | Tagged , | 6 Comments