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

Kill Me Now…

Same Old Recording..

Another day, another symptom…Another test, another diagnosis.

pristiq_doll_57744

Sound familiar? For many of us, this translates into de ja vu. When one is chronically ill, this is the typical day in & day out routine. It gets old. And I get old and older with each passing & redundant medical mush-filled day.

A couple of years ago there was a company who came up with a cleaver TV commercial for their depression medication. I still remember the funny, little woman wind-up doll. She would move across the floor slowly until she just stopped in place with her head hanging down over her body. Clearly, she was done. She had nothing left to keep moving. That’s a visual that I can relate to these days. (Except that I use my lawn chair cushion on my office floor for such moments). SjoDry is running on low reserves and clearly the “Five Hour Energy” drinks are not having their hoped for & intended result.

Don’t worry, SjoDry is not on the ledge ready to jump (though I am sounding a bit that way, aren’t I). It’s just one of those moments (hours or weeks) where you just get tired of being a constant patient. Granted, it’s the only thing I have ever known & that condition is my “normal” condition. It’s just that I have other things on my plate & on the horizon to be excited about and all of this never-ending medical search for answers & treatments is getting in my way of being blissfully excited without interruption. As in, Lord please give me a medical break for just awhile. I would just like to be consumed with joy and excitement without the reality of my copious & never-ending medical issues clouding my joy.

Not only that..SjoDry is almost (and by tomorrow) will be in full FEAR mode. All of the immune & autoimmune forces have now come together in a full-on SjoDry attack which has resulted in the need for a bone marrow biopsy tomorrow on Friday (Jan. 30th) to rule out Lymphoma. You would think that 20 or so past surgeries would have conditioned me to handle this test like my perfectly conditioned Marine son. HA. Not a chance.

I will admit to the world, that I am a complete & utter chicken for any invasive & painful test that I must be conscious for. Despite my suggestion that I would be perfectly happy and in fact, would prefer general anesthesia for this test, my input was dismissed by my Hematologist (with a chuckle no less). Did he really think I was kidding?

After the completion of this test, I am once again launched into the frustratingly familiar condition of W-A-I-T-I-N-G. See previous blog post: https://sjodry.wordpress.com/2013/05/14/patience-grasshopper/

My life is starting to remind me of a 45 rpm record that’s gotten stuck.

Wrack My Brain (and body)

Wrack My Brain (and body)

Somebody please play a new song. I really don’t want the title to be:Kill Me Now “. I think that title would be best reserved for my 3:00 appointment tomorrow. If you hear a piercing scream from Pittsburgh, you will know that it’s me.

I’m trying not to let my mind get too carried away with a potential cancer diagnosis & what that treatment would look like. Or how mad I would be if I lost my hair after having taken so long to grow it out.

Perhaps a better title today would  be, ” The Ramblings of  SjoDry “. But what this SjoDry ramble underscores is the chronically ill patient’s daily experience. I think one big difference between the average “well” person and the chronically ill person, are the components of life that allow us to feel/be ” well-rounded ” & experience a wonderful quality of life at will. The chronically ill person is robbed of those experiences. We are forced to live our lives on the couch; in bed; in hospitals; in doctor’s offices, etc. with no choice, voice or control. Our positive experiences, when they happen (and they do happen), may often be veiled in pain & with limitation. That’s not to say that we don’t have happiness or joy in our lives, only that there can be limitations in how we experience it.

Okay, enough of my ” I’m angry at being a perpetual patient ” rant. I know that all of you fellow Sjoggies join me in raising our collectively clinched fists (gently) at this world of medical unfairness!

Another day, another test and hopefully NOT another diagnosis…

May the lidocaine be with me!! And if anyone dares to say, ” Little pinch”, they’re dead!!

Sjo-Philosophical

Posted in Random, Searching for Answers, Symptoms | Tagged , , | 2 Comments

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 | 3 Comments

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