My Sjogren’s Escape

If Only For A Minute or Two..

My son giving John Kerry the  Rome Italy Embassy Coin

My son giving John Kerry the Rome Italy Embassy Coin

My dear Sjoggie-Mates, I will ask you to bear with me as I post something totally unrelated to my daily journey with Sjogren’s Syndrome. Well, not totally unrelated. We Sjoggies are all in search of the right meds and therapies to help us function and feel our best each day. Occasionally, that comes in the form of good news or happy family events. It is with unabashed enjoyment that SjoDry, in blatant, “Braggy Mom” mode, shares one (or two) of those “bursting with pride”      parental moments.

My son, Jon, an active duty Marine, recently completed a very difficult & challenging program to become a U.S. Embassy Security Guard. Currently, he is assigned to the first of his 3 consecutive, year-long assignments.  To his and all of our surprise, his first assignment (without any hints or twisting of arms from his Sjoggie mother) happened to be Rome, Italy.  During his assignment there, Jon will be tasked with providing security to Embassy personnel, documents and dignitaries. Yesterday, Jon had the honor & privilege of meeting and protecting our Secretary of State, John Kerry. Jon was able to share a specially designed Rome Italy Embassy Coin with Mr. Kerry as is customary for all visiting dignitaries and VIP’s.

I suppose that part of me is feeling a bit like a groupie on the sidelines, since the whole thing is just cool. But more than that, it is a reminder that each time we see our kids in a successful moment in their lives, it feels like we made it to the finish line as parents. Do you know what I mean? I may not have licked (or ever lick) this Sjogren’s anchor in my life. But by golly, Sjogren’s didn’t keep me from helping to grow our kids into happy, independent and successful people. And that’s the goal, right?

Kelsey (right) with her music student

Kelsey (right) with her music student

I am equally as proud of our multi-talented daughter. Kelsey, is a talented & dynamic Music Teacher in Ohio. Not only does she possess the gifts of a beautiful voice and piano playing ability, she was meant to touch the lives of young children every day with the blessing of teaching them music.

As we scurry, or maybe more appropriately, drag ourselves around trying to meet all of our holiday demands, take time to reflect on what Sjogren’s has not taken from your lives. The abundance of blessings;  people; and relationships and their therapeutic impact on our lives cannot be measured. But they can be appreciated.

Thanks for indulging my prescription for a happy escape with you.

May you all be filled with smiles!

Sjoproud and smiling :-)

 

 

 

 

Posted in Random, Support | 1 Comment

I’m More Than My Signature Line

When You Feel Like Chronic Illness Has Become Your Identity

When you work for or own a business, you typically develop what is called, a “signature line” at the bottom of the emails that you send to others. The signature line typically lets someone know what your name is, maybe your title or the name of your business, your phone number or web site and maybe even a marketing tagline. For instance, my business is Vital Signs and our tagline is: “Our Signs Sell Your Business”.

When I joined the Sjogren’s Syndrome online world forum a few years ago, the first thing that I noticed was that most of the members had a signature line. In those signature lines however, I noticed that each member listed ALL of their medical conditions and ALL of their medications. I mentioned this in one of my first blog posts as it struck me funny. It had the same emphatic smack as a first-time intro at a 12 step program. Hi. I’m SjoDry and I have ________, __________, __________, and I take: yuck, yuck & yuck.

My first reaction was Why? Why does anyone want to announce their medical history to others? After all, we are more than what plagues us, right?! I quickly learned that the rationale for this very specific signature line (and there is one) on the Sjogren’s forum, is because it helps the other members to know a bit about you. If a member is having a particular problem with symptoms or medication side effects, etc., having the knowledge displayed in their signature line will help the other forum members to suggest, or not suggest, certain solutions. More than that, it helps to be able to provide support to others when you see what their daily journey includes. In our very supportive online Sjoggie Forum, there are always others who have or are experiencing  the same symptoms.

Are We Our Signature Lines?

So are we our signature lines? Does chronic illness become our identity? For some, I suppose it depends on which day or moment you are speaking with them. For many, if not most of us, the battle to NOT become  hyper-focused on how badly we feel each day is as much a part of the daily war we fight, as our autoimmune and other afflictions are . I think I can speak for every person who has been the unfortunate recipient of an autoimmune condition or two or three. None of us would choose to painfully feel the way that we do each second, moment, and hour of each day, week, month or year & beyond. But the load gets heavy. On the one hand, I don’t want to burden others with my daily aches & pains..but on the other hand, I have not gotten any better at suffering in silence for years and years with no end in sight. Thank God for those people who love me enough to compassionately listen to me. A little venting with a kind ear helps give me/us the energy to keep fighting the good fight.

As some of you may recall, I also allow myself to have what I call, “my pity parties”. Of course, they have to happen on the weekends since I work full-time. My pity parties have boundaries. I allow myself one day or two at most. They usually involve me propping up on my bed, watching Lifetime or Hallmark movies; flipping through fluff magazines or gift catalogs & a suitable (to be determined by SjoDry) amount of chocolate or some other equally satisfying form of sugar. And yes, when I am feeling down, I can be especially self-absorbed, sad & neurotically focused on how bad I feel (as in po me). I do recognize this about myself & try to avoid others during these ultra non-productive “sjo-consumed” periods of time.

Like A Dog With It’s Favorite Chew Toy…

Hang onto your identity like it's a chew toy!

Hang onto your identity like it’s a CHEW toy!

I refuse to let chronic illness win!! Like a dog with it’s favorite chew toy, I am hanging onto myself and to my ‘non-sickly’ identity as I have always known it. Because that is really who I am, no matter what my physical condition may be. Anyway, I still have work to do; people to love and spend time with; places to visit (Hello ROME Italy); fun to have; things to do that I have never experienced; Blessings to be grateful for, Blessings that I need to be to others and so many things that don’t have anything to do with symptoms or medications.

I’m not gonna lie, attitude is a big factor here. I have a choice to make every day! I can give into my intrusive illnesses and just curl up in a fetal position in bed & give up on life. Or I can choose to fight and accept whatever “new normal” may present itself on any given day. In other words, I will not let my signature line dictate who I am!!

Is it just me or do any of you feel like this?

Perhaps my new tagline should be: SjoDry and Determined!!

What does your tagline say?

SjoDry

Posted in Random | 2 Comments

When The Bloodwork Doesn’t Confirm The Diagnosis

If It Quacks Like a Duck…

If It Quacks Like A Duck....

If It Quacks Like A Duck….

We’ve all heard the expression, ” If it looks like a duck and quacks like a duck…it must be a duck”. Well, not necessarily when it comes to autoimmune conditions. Often they present in a clear, undeniable, ‘can’t be doubted’ kind of way, yet the bloodwork test(s) that supports the diagnosis is negative. Does it mean that the patient does not have the autoimmune disease? Absolutely not. It means that a certain number of patients (some estimates say 20% to 40%) of Sjogren’s Syndrome Patients  do not have positive bloodwork. These patients are otherwise known as being “seronegative“.

On the other hand, a patient can and often does have more than one autoimmune disease or a mixture of cross-over symptoms of various autoimmune conditions. Diagnosing this mixture of cross-over symptoms can be equally frustrating for both the physician and patient, particularly when, again, there may be no positive bloodwork to support some of the co-morbid diagnoses.

I co-lead a support group for Sjogren’s Syndrome patients and am always receiving calls & referrals from patients who have been referred to me for possible inclusion in our group or just for Sjogren’s information.

I received a call a number of months ago from a very nice woman who wanted group information and also was looking to establish a Rheumatologist familiar with Sjogren’s Syndrome.  We maintain a list of doctors in the Pittsburgh area for just such calls. One of those doctors, who also happens to be my physician, is a doctor who was trained under one of the leading Sjogren’s doctors in the country. This doctor is also in the process of starting a Sjogren’s Syndrome Clinic here in Pittsburgh.

Excited to finally get some answers, our new member contacted my doctor for an appointment. Both she & her husband attended her first doctor appointment, which she told me, lasted about 1.5 hours. The woman was ecstatic to finally have found a caring doctor who would diagnose and treat her. She was impressed with his thoroughness, the way that he listened to her and the large number of blood tests he ordered to help find answers.

But then a very disappointing and familiar scenario happened. When she returned to his office to discuss the testing results, the doctor informed her that she did not test positive for Sjogren’s Syndrome and therefore, does not have Sjogren’s. It is a frequent story that I hear from some of our group members and by many folks who frequent the Sjogren’s World Forum. And it is of course, understandably upsetting. After months or years of dealing with multiple symptoms, severe fatigue and pain, one gets excited at finally being diagnosed and more importantly, treated, only to find out that they are now back at square one. Not only that, the patient has just learned from this doctor, that he only believes that her condition is Sjogren’s Syndrome if the bloodwork says it is, because that is the teaching philosophy of teachers that he was instructed by and he follows. Instead, she is told (as so many are), that she has Fibromyalgia. I will save my personal rant about Fibromyalgia as the frequent  “go to” diagnosis when other clear-cut answers have not been found…for another day. But I will say this, I had the exact same Seronegative label until I discovered that as a person with severe immune deficiencies, I cannot produce the antibodies that would “prove” I have Sjogren’s Syndrome. It is very common for Sjogren’s patients to have immune deficiencies, which may, for some, explain their seronegative status.

Which came first, the lack of diagnosis or the depression?

Is there any doubt that autoimmune patients get depressed by all of this? I have read some studies where depression and brain fog were the initial presenting symptoms of Sjogren’s. Whether depression is an actual symptom of Sjogren’s Syndrome or whether it is a situational result from dealing with chronic illness and/or the lack of diagnosis/treatment, it seems inevitable that at one time or another, autoimmune patients (Sjogren’s and others) will experience depression.

I felt badly when my new member suggested that perhaps she should not be a part of the group since the doctor told her that she did not have Sjogren’s Syndrome. Yet, she knew in her mind and in her painfully afflicted body, that she did have Sjogren’s Syndrome. Does it mean that even though she knows her body better than anyone else, but because she did not attend Med School that she is automatically wrong? I personally don’t think so. But most of us patients are treated exactly that way. I would much rather see doctors act as partners with their patients in finding the correct diagnosis and treatment. That doesn’t mean that they must have the answer right after the bloodwork. Afterall, it is (or should be) a process of elimination in ruling out conditions to ultimately and eventually arrive at the correct diagnosis and treatment. I do have an Immunologist that uses this approach & I very much appreciated his honesty about having no clue what my diagnosis was and not shooting from the hip with a wrong diagnosis. How refreshing.

What I don’t understand (and maybe some physicians do this and I am just unaware of it), is why can’t vague and nebulous autoimmune illnesses like Sjogren’s Syndrome, be diagnosed in the same way that ADHD is? That is, ADHD (Attention Deficit Hyperactivity Disorder) is a disease which has no single, diagnosing test. The physician, therefore gathers information about the person and symptomology when making the ADHD diagnosis. And ultimately, the patient is treated with medication. If the patient responds to the medication in a positive way, then the diagnosis of ADHD is confirmed. Wouldn’t it be a lot easier to make a positive assumption of the Sjogren’s Syndrome Diagnosis when faced with overwhelming symptomology in the absence of positive bloodwork and treat it accordingly?? If the patient responds favorably, then we can assume that indeed, the patient has Sjogren’s Syndrome. Who knows, this might even alleviate some of the patient’s mental anguish and subsequent depression. But maybe that’s just me…what do you think?

SjoDry and Quacking

Posted in Patient Pet Peeves, Searching for Answers, Seronegative, Symptoms | Tagged | 11 Comments

My Medical Dream Team…It’s happened again!

p1newtonslaw

Newton’s Third Law… well kinda..

For every action, there is an equal and opposite reaction…do you remember learning that? Somewhere in the cobwebs of my aging mind,  Newton’s Third Law popped up when I thought about my most recent (last Friday, August 1st) doctor’s appointment with my new Neurologist.

You see, not long ago, I blogged about Arrogance and the Average Physician, in addition to previously blogging about some of my other ” please let me forget “  doctor(s) experiences. As I have mentioned before, I have strong feelings when it comes to both giving and receiving superior customer service, no matter what the industry may be!

And yes, I am one of those people who speak up when I am the recipient of poor customer service or patient care (their negative behavior = my equally assertive reaction). But the other part of that is that I also believe in being the first to compliment and call attention to wonderful customer service & patient care when I am on the receiving end of it (their fabulous customer service = my equally Because I’m Happy dance). I love to cheer & tell others about someone who is great at what he/she does or how kindly they treat the people with whom they must interact with as part of their daily job.

Sjodry’s Dream Team is coming together!

Like many of you, I have faced & dissected a number of medical frogs before discovering what has finally become my medical multidisciplinary dream team. When I first discovered what a gem my Immunologist is, I almost felt like weeping over my newly given blessing. I didn’t know whether to shout it from the rooftops or protect it as my classified top secret. I quickly gave him the nickname of  Dr. “Compassion”.

Without getting into the seronegativity of it all, let’s just say that SjoDry had a particularly difficult time establishing a Rheumatologist that she genuinely likes & did not just settle” for. Oh, did I mention that it took five years, 4 Rheumatologists, several flaring incidents of high blood pressure; tachycardia, flaming joint symptoms and tears before I found him?? But when I did find him..I discovered that he has a last name that can prove to be challenging for some (okay..Me). Being from the south,  I routinely slaughter words & names on a regular basis. So I asked my new Rheumatologist.. Please tell me…what is the correct pronunciation of  Noaiseh? I had asked some of his staff, and was told the following: 1. No-ice-uh  2. No-ice-ee & 3. No-ice-say hmm, still not sure. He just laughed and said, Just call me Dr. Nice “. He had no idea how funny I thought that was since I had dubbed my first team member,  Dr. Compassion. Pleasantly surprised to again have a very kind physician who intently listened to my rapid gunfire & unfortunately well-rehearsed repertoire of symptoms, could it be possible that I had discovered another SjoDry Dream Team Member? After multiple Rheumy appointments with Dr. Noaiseh, it is with pleasure and great thankfulness, that SjoDry has indeed confirmed another wonderful dream team member. Not only that…Sjodry has learned (actually researched beforehand) that Dr. Noaiseh trained under one of the leading Sjogren’s Syndrome Doctors in the country and is starting a Sjogren’s Syndrome Clinic here in Pittsburgh, PA. Did I mention the word, Blessing?

And then there was Jobe..

Dr. Blair Jobe, that is.  As you are all acutely aware, Sjogren’s Syndrome is the gift that keeps on giving!  Never mind all of the possible adjectives & crude gestures that could accompany that statement. I’m just mentioning it so you will understand why I added a Thoracic Specialist/Surgeon to my dream team. It just so happens he is also world renowned & invented the very uncomfortable & gag-inducing Impedement Test which required me to host a horribly intrusive tube up my nose & down my throat for 24 hrs. I think it was the most quiet I have ever been for 24 hrs. My husband, Steve didn’t complain about the side effects. But just for the heck of it, I looked up the name/word Jobe to see if it has any interesting meanings. I was surprised to see that the archaic use of the word jobe meant to criticize or scold. Now there are many physicians who could own that definition, but I am happy to report that Dr. Jobe is most certainly NOT one of them. I knew that I had another addition to my Dream Team, when on two separate appointments, Dr. Jobe apologized to me for being late & making me wait. Picture my shocked, whiplash-like reaction.  It was evident that his kindness & his ability to listen & treat me as if he had all day to spend with me, was his well established and ingrained standard of patient care. Score another one for SjoDry!!

Drumroll please…..

And now.. yet another fabulous doctor for SjoDry!! We have all learned (and it is usually true) that the really great docs we so desperately seek out, can take months to get into to see. In my case, it took 6 months to get in with my new Neurologist (Dr. Galen Mitchell). However, 6 months is better than his previous work location where patients had a two year wait. Is it just me or do any of you know the minute that you speak to your new physician, that you have just hit the physician lotto? From the moment he walked into the room with his kind smile, twinkling eyes, the shaking of my hand .. and YES…another apology for being late… I knew I liked him!

I am thinking that this pattern that I am recognizing with my great physicians, is their ability to connect as a caring person first, before I am met with the typically tightly constructed doctor wall. And in most cases with this type of caring doctor, the doctor wall doesn’t even go up. It is more of a professional and interactive conversation based on two people sharing information. There is a definite distinction that stands out to me. Now granted, we are still in our Doctor ~ Patient roles… it’s just that I have not been forced into the typical & well established Superior ~ Subordinate role.. before attempting to establish what I hope will be a trusting relationship. I wish all physicians knew that being kind to their patients & exposing a small glimpse of who they are as a person, will not compromise their physician role in any way and in fact, is very reinforcing to a patient. And after a lengthy search to find the right doctor(s) fit for me, I now recognize that the common thread that is shared by each of my dream team members is a mixture of: brilliance; knowledge of their field; the ability to listen; kindness; a sense of humor and compassion.

At my initial appointments with two different physicians/specialties, (who are now a part of my dream team), each physician said the same thing to me. After being blinded and deafened by my copius, complex and dis-jointed medical history, they responded with, ” You’re a mess “.  This comment always elicits a deja-vu chuckle from me. But more than that, it underscores that I have found the right physician. I very much appreciate a doc who will tell me up front, ” I don’t know what’s wrong with you “. Because so far, that statement has translated into me finding a doc who is willing to help me find answers, and more importantly, solutions! The reality is that I am a mess and it is hard, if not impossible, to determine the answer(s) to the universal Sjodry question of ‘which thing is causing which thing’ ?? But I know that we can all agree that finding a compassionate doctor who will truly listen and is willing to search for answers, is half the battle. Of course, it helps if he/she is personable enough to share his baked bean recipe with me and shares my same enthusiasm for a good bowl of  ‘down home’ southern cheese & garlic GRITS!

If you are still searching for your multidisciplinary dream team members, don’t give up! While I know that the search can at times, be a supreme exercise of frustration; wasted co-pays and stress, it is possible to find the right “dream team calibur” docs. And when that happens, you will be thanking yourself for continuing the search. And if I have learned anything on this rocky journey of poor health that we Sjoggies travel, it is that we are nothing, if not persistent!

So keep fighting the good Sjoggie fight and you will, in time, find your Dream Team along the way!

SjoDry

 

 

 

 

 

 

 

 

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Posted in HUMOR, Random, Searching for Answers, Sjodry's Doctor/Dx Quest, Symptoms | Tagged | 3 Comments

Always looking for a magic bullet….

Foods, Meds & Miracles..

COULD THIS BE SJODRY'S MAGIC BULLET??

COULD THIS BE SJODRY’S MAGIC BULLET??

There isn’t a day that goes by that I don’t find myself either researching,  scouring a store or website trying to play match the symptom with a miracle. I am sure that many of you are doing the same thing. We sometimes read the product ads & watch the commercials with some interest & perhaps, a spark of hope.

Of course the best kind of advice comes from other Sjoggies that we trust. It is universally understood that if you are a Sjogren’s Syndrome Patient, you have shelled out a whole lot of money in multiple product pursuits and probably have some credible product advice & success that you can share with other Sjoggies.

Of course, this search for miracles also applies to our quest for healthy foods and diets. I have blogged before about searching for the best eating practices for Sjogren’s Patients. I am consistently overwhelmed with trying to create a marriage between an anti-inflammatory diet and a Paleo/Mediterranean/something kind of diet(s). These efforts typically leave me feeling like a ‘deer in headlights’, dazed & paralyzed, without any plan of action.

During my (increasingly frequent) sick days at home, I catch up with Dr.Oz.  In recent programs, Dr.Oz has started touting the benefits of Smoothies. Well, who doesn’t love a fruit smoothie?! Oh wait..you actually put a variety of green leaves & stems in these smoothies? Not sure I’m a fan. The only time (a couple of years ago) that my husband, Steve & I, tried to pull out an old juicer hidden for years & use it, we were not impressed. After buying every juicing ingredient we could find & loudly juicing them together in the juicer, we came to a couple of conclusions: We put a healthy amount of fruit & vegetables into the unit and were only able to share about a 1/2 cup each of this dark green concoction and we also had a huge mess to clean up. So it was easy to understand how our enthusiasm for smoothies got pulverized along with all of the ingredients.

Enter NutriBullet..

As I have mentioned above, I stay in the never-ending search for products and medical solutions, and as a Sjoggie, that is unlikely to change. But as we periodically do, Steve & I declare that we really do need to get healthy & it’s now or never…blah blah blah. With that newly revived mindset, Steve said to me at the beginning of this week, “Hey, you want to go by Best Buy & take a look at that ” As Seen On TV “ NutriBullet?? Nutri what? Say it again…it’s a what? Well, this was one “As Seen On TV” commercial that SjoDry had missed. (Probably in a sleep coma on the couch from my Sjogren’s fatigue, no doubt). Sure, let’s go see it.

Of course we bought the NutriBullet. We eagerly opened the box with all of it’s parts & pieces, and the hardback Smoothie Recipe Book. The book not only contained what appeared to be some delicious smoothie recipes, it also has a large number of people giving their testimonial about their experience with the NutriBullet Smoothies. Now normally on these (wonder if they really got paid) testimonials, I pay little attention. But I am always sucked in with a before & after story (no matter whether it’s Weight-Watchers; HGTV or anything else). When it has the Before & After presentation, I am really captivated. So back to the NutriBullet Testimonials..there are many people who use these Smoothies for weight loss, but there are also many people using them to help their medical conditions. Several medical conditions were presented (A.I., Poor Immune Systems, Heart, etc.). The featured testimonials all boasted about reducing their weight, meds & their bloodwork levels. But the universal result that every person listed was a huge increase in their energy! Okay..now you really have my attention.

Deja-Vu…

We enthusiastically took turns preparing our Nutri Smoothies. After pouring the smoothie into my NutriBullet cup, I was stopped in my tracks. What you may not know is that SjoDry has a very weak stomach & can be launched into heaving action on a dime. When I looked at my smoothie, I was transported in time about 30 years to the days of our kid’s really yucky, and barf-producing diapers and their green contents! I told Steve, I’m not sure this smoothie plan is going to work for me. But I knew that I would never find out if this was my magic bullet unless I tasted it. So with my skeptical & cringing face, I took a tiny, green sip. To my shock & pleasant surprise, it tasted wonderful! It was like the delicious tasting, non-veggie smoothies that I so fondly remembered from the past. It was easy to finish drinking the smoothie..but I will still need to work on the appearance of the drink and my olive green flashbacks! For now I can tell you that I have had a smoothie for two breakfasts (in replacement of my food). I have been surprised at how full they have kept me with no roller coaster blood sugar dives. In fact, I worked right through lunch & realized that I had not eaten my typical frozen Lean Cuisine fare. We both felt the same when we had smoothies for our dinner one night. The smoothie was very filling and neither Steve or I made one of our typical snack runs to the kitchen! Can I get a ShamWow on that success ! (Another As Seen On TV product) haha.

Stay Tuned For Future Updates

So as it stands right now.. SjoDry may have found one of her Magic Bullets! For those of you who may share my weak stomach or concerns about tastes…have no fear! I was amazed that we really cannot taste the healthy greens in these smoothies. And even more interesting, I actually used spinach that still had the stems..& they were pulverized beyond view or taste. Of course I love the fact that these Smoothies leave me with no embarrassing green particles on my teeth! I will be weighing the success of these smoothies on my scale and on my thighs (hint hint) and watching closely for ANY added boost(s) in energy.
If you are considering a Smoothie approach for your diet or as a supplement to your diet, and after checking with your physician..of course, SjoDry is urging you to ‘ go ahead & ‘ BITE THE BULLET ‘!

Here’s to your Sjoggie Health, may the Smoothies be with you!

SjoDry and sippin..

 

 

 

 

 

Posted in Food & Diet, HUMOR, Over The Counter (OTC) Products, Random, Searching for Answers, Symptoms | Tagged , , , , | 4 Comments

SjoDry’s new addiction..

I am not a Pharmacy Rep…

I do not push products on anyone, but I, like most of you, am a patient who suffers the daily challenges of Dry Mouth. And also like you…I spend a ridiculous amount of money trying to find over-the-counter products that work FOR ME for all of my Sjogren’s manifestations which lend themselves to such products.

The Sjogren’s Syndrome Foundation conducted a recent survey among it’s members to try to identify how much we Sjoggies spend on (OTC) Over The Counter products? Sjogren’s Patients spend between $2000 – $4,700.00 annually for OTC products, which by the way, are not covered by insurance…but I won’t start on that rant right now.

I like Research-Based Products that work..

Don’t we all? I have an earlier blog post on my site where I coined a term to describe myself: “Cyber-Searcher”. Specifically, it relates to my continuous and never-ending researching activities online. Yes, curious minds want to know..but it’s more than that. What I have learned through my many years of being medicated by lots of Docs in different specialties, is that I am  the only one who is paying attention to what is going into my body on a daily basis or any contra-indications there may be. This is true..also, when I am buying seemingly benign over-the-counter  products in the drugstore or online.

So to get to my point here…

I'm addicted!

I’m addicted!

I have found a product that I am addicted to for my dry mouth. I don’t usually fall in love with any product and just hope for the best. But my coveted “Green Gum” has become a staple in my dry mouth arsenal. Specifically, the name of this green gum (which reminds me of the chicklets gum I used to chew & eat as a kid) is called, ” MighTeaFlow ” Dry Mouth Gum, and it is produced by the Camellix Company. : https://www.camellix.com

I discovered that one of the main ingredients in this gum is Green Tea. Of course my researching efforts led me to many articles explaining the medicinal and healing qualities of Green Tea. I also had the pleasure to meet the creator of this gum, Dr. Stephen Hsu (shoe), http://socksonanoctopus.com/blog/2014/03/ted-talks-dr-stephen-hsu-success-hardship/#.U3ZRxtJdV8E at the recent Sjogren’s Foundation Patient Conference. I was very impressed with the display of this gum’s phase two clinical trial statistical results. http://news.gru.edu/archives/11921 I liked that the gum was created by a doctor who is a professor at the College of Dental Medicine at Georgia Regents University and conducts all of the research to prove the benefits.  Chewing one piece of this tasty gum is equal to drinking one cup of Green Tea. But more importantly for me… the driving question and bottom line is, does it work? Will it provide more saliva to me?? And the answer is a resounding YES!

Unfortunately, on a day trip in the car, my husband saw me getting a piece of my “special” gum out of my purse & asked if I had another piece? Hmm. Okay, I did what every good wife would do, and shared with him. I tried not to think about how difficult it seemed to be as I parted with that piece of gum and had a brief moment of guilt for feeling that way. And now, my husband is also in love with my purse-protected gum. The dry mouth benefits of my gum are important of course..but the flavor of this gum and how long it lasts..is what caused my addiction. I personally, have never chewed any piece of gum in which the flavor lasted so long and I didn’t end up feeling like a cow chewing cud. At this time, it can only be ordered online. If I am being honest… it is a bit more pricey than I would normally pay for a regular pack of gum…but….it is not a regular, everyday gum and when I think about what I have spent on the many other products that I have purchased that didn’t work..the price is a small price to pay for a product that I know will work for me.

I think what I am ultimately saying here, is that it feels reinforcing to me as a patient, to identify the products that truly help me. It is one less thing off of my heavy, Sjogren’s plate. And research is research, but when the research so matches the quality of the product and does what it says the product will do AND…tastes great in the whole process… Well, you can see why I have become happily addicted and am bubbling over with enthusiasm for this yummy gum.

While at the convention and waiting to step up to the Camellix Table with my green gum on it, I heard a woman discussing the Camillex Shampoo with another woman. I really was not trying to listen in on this conversation, but I could not help myself when I heard the lady mention that the Camellix Shampoo was sulfate-free. I had just seen a celebrity stylist on Dr. Oz a couple of days before the convention, explaining that people with severely dry hair should be using a Sulfate-free Shampoo. Of course, since I’m styling my typically dry, scarecrow hair..my ears perked up. The lady went on to say that she & her sister both have thinning hair that is a problem shared by several in her family. I don’t know if I am there yet…but I sure am starting to see more clumps of hair fall out of my head..so I continued to pay attention to her conversation. She told the other woman that she & her sister had been using Rogaine shampoo for a long time, but that she switched to the Camellix Shampoo just to try it. She said that her hair was now much fuller & she had totally stopped using her previous shampoo & her sister wanted to know what she had done differently because her hair looked so full & shiny?

I don’t know about you..but that overheard conversation was enough to make me want to try the shampoo. I am currently using the shampoo, though the jury is still out on my final evaluation of it & how it is working for me. Also, I complicated issues because I got, what can only be described as a brunette version of a, ‘Little Orphan Annie’ perm. But I will update my research findings at a future date.

But back to my gum, all of the members of the local Sjogren’s Support Group that I run have had samples of the green gum and love it. (hint..the company will send you samples if you call them). As I mentioned, I am not any kind of sales rep for the Camellix Company or my new-found saliva-producing gum, I just like to share any helpful information for my fellow Sjoggies when I find it because I know that we are all searching.

Here’s hoping that your search for successful products is a short one!

Enjoy your weekend!

SjoDry

 

Posted in And the research says..., Over The Counter (OTC) Products, Random, Searching for Answers, Symptoms, Videos | Tagged , | 3 Comments