Sjogren’s Syndrome and Moving Forward, September 12, 2013 Gratiana Lovelace (Post #447)

Having a thing confirmed is quite different from having the suspicion of it.  And I am not quite sure how I feel about that yet. But on the flip side, dryness in the age of adult diaper commercials might be considered by some to be a plus at my age–my age being on the sunny side of matronly.  Ha!

But the need for constant lubrication to lessen the pain in my eyes, sinuses, mouth (including swallowing issues), throat, skin, and nether regions, etc., becomes a continual effort to keep moist, coated, and supple, etc. 24 hours a day.  And yes, I wake up in the middle of the night with painfully bone dry eyes that I have to moisten with drops and a severely parched throat that I have to lubricate with a special gel.  And these difficulties are only the outward signs of what may also be affecting my internal organs and their functioning.

That one’s own body would rebel against itself–attack itself–seems bizarre and counter SjogrensAntibodiesStainingSep0613wikiintuitive, and certainly not helpful.  It is not like my body is a petulant child deciding not to play nicely with its friend in the sandbox in a fit of pique.    Although, maybe it is.  You see, the extreme symptoms of dehydration across my body that I have experienced the past year–after several years of worsening dryness–has finally been diagnosed as an autoimmune disease called Sjogren’s Syndrome (pronounced show-grins).  Well, at least what is going on with my body has a name–and I can pronounce it.  Ha!  (see image right)

And no folks, my being fat has nothing to do with my health issues!  I state that categorically because a few years ago–before all of my extreme eye disease symptoms started last year–my internist’s then nurse practitioner suspected that I had Sjogren’s Syndrome disease and they sent me for some blood tests and to see a rheumatology specialist, since my blood tests showed that I was borderline for it.  This initial rheumatologist doctor did not take my medical history and only focused on my arthritis symptoms–which I will grant you were the more painful symptoms at that time–and said if I lost weight, all of my problems would be solved.  I chalked that doctor up to being lazy and prejudiced against fat people.  How I wished that I would have asked for a second opinion then. Maybe I would have been sent to a doctor who was a better diagnostician–and not have had my eye pain and vision deterioration, etc., that I am now experiencing.  But hindsight for me is a lesson for all of us to advocate for our own best health care.  And don’t let insulting doctors keep us from the right diagnosis.  Okay, I am off my soap box now.

The autoimmune disease Sjogren’s Syndrome is chronic and not curable, and it is thought that it might be caused by two potential factors–a virus or genetics (excerpted from Wikipedia; image right):

“The pathogenesis of Sjögren’s Syndrome is not well understood. The number of factors SjogrensSalivaryGlandBiopsySep0613wikiinvolved in the progression of the disease makes it difficult to determine its exact origin and cause.[14]

Sjögren’s Syndrome was originally proposed to be a specific, self-perpetuating immune system-mediated loss of exocrine glands, specifically acinar and ductal cells.[15] Although this explains the more obvious symptoms, i.e. the lack of salivary and lacrimal fluid, it does not explain the more widespread systemic effects that are seen in the progression of the disease.[16]

The current theory behind the origin of the disease involves a two-hit hypothesis; the first hit is a genetic predisposition to the disease. The second hit occurs upon challenge with a virus. It is suggested that upon presentation of a virus antigen, such as Epstein-Barr virus (EBV), dysfunctional plasmacytoid dendritic cells begin to produce elevated levels of Interferon α (IFN α).[15] This increased level may then incorrectly stimulate auto-antigen myeloid dendritic cells, which would elicit an immune response resulting in the stimulation of autoreactive T cells and the proliferation of autoantibody-producing B cells. This would ultimately result in the destruction of the tissues and glands giving rise to the symptoms associated with Sjögren’s Syndrome. The genetic predisposition may involve the formation of dysfunctional plasmacytoid dendritic cells that have been theorized to play a role in the pathogenesis of Sjögren’s Syndrome.[15] Normally, a cell presenting an antigen incorrectly would be detected, and directed to undergo apoptosis thus preventing any manifestation of the disease.[14]

So initially, I am being placed on a drug that, among other things, also has had some success in systemically improving moisture production in the body’s exocrine glands for Sjogren’s patients–as a simplistic way of looking at it–using a drug that is manufactured from a plant native to Brazil. Thanks to my Brazilian Friends! Muito obrigado!  And curative medicines from specialized plant species is yet another reason to save the rainforest.  Snap!  I am on a very low dose to begin with–both because  there are some side effects of the medicine that I have to look out for such as dizziness, fainting, heart symptoms, and diarrhea, etc.;  and because the medicine is used to caused epilepsy in lab rats for the study of that disease–and the medicine can get into the human brain and cause epilepsy.  However, since I am not a lab rat, I take heart.  Ha!  And  who knows!  Maybe my skin will become so supple and youthful looking–in addition to my already nice complexion–that the AARP folks will stop beating down my door.  Ha!
[Update 9/11/13:  When I scheduled this essay Sunday morning, it was before I had a bad reaction to  the medicine mentioned above later that day–racing heart, sweating, spiked blood sugar, feeling faint, etc.   So, we’ll have to try a different medicine in a week once my body has been purged of this one.]

The other medicine choice was a malaria drug with worse side effects–more likelihood of diarrhea and increased digestive issues, which would have compounded the existing issues that I already have after having my gallbladder removed in 1999.  So, I did not leap to take this medicine to begin with.  Although I must say, I really miss not having had an exotic trip that it would have taken to contract something that would belatedly require me to take a malaria drug.  *facetious alert* But on the flip side, if I were to travel to an exotic locale, I would be already ahead of the game with my meds.  Snap!

Why am I telling you all this about my health?  Because if you are suffering similar symptoms  of extreme dryness and fatigue, that might be the autoimmune disease Sjogren’s Syndrome (explained via the Mayo Clinic site).   And if you haven’t found a doctor who has diagnosed it correctly, then you need to be your own best advocate and show them the printouts from the hyperlinks I have given you.  Not every doctor is as tenacious a diagnostician as on the tv show House.   I am one of the lucky ones, because my current optometrist kept pushing me to ask my internist again to see whether I have Sjogren’s–because every patient of my eye doctor’s who had eye symptoms as severe as mine (corneal abrasions and ulcers that won’t heal due to the extreme dryness, along with diminished vision) also had Sjogren’s–and I was then sent to a new rheumatology specialist who recognized my symptoms immediately.   Thank  god!

Another reason why I am telling you this about my health is that it is cathartic for me.  And I promise that I will not constantly barrage you with daily information about how I am feeling on a particular day–because Sjogren’s is a chronic disease that has no cure.  This blog post is it!  So you can sigh your relief.  I had a maternal  great aunt whom I loved very much, but she always talked about her health problems ad nauseam.  Though, I still had great sympathy for her difficulties–some of which were merely exaggerations of everyday aches and pains–I felt thserenity_prayerFeb0712apronsenoritablogspotat she needed to try to focus on something outside of herself.  And I am glad to say that once my great aunt hit 101 years when I last saw her before she died many years ago, her outlook on life had completely changed for the positive and she felt that everything was wonderful–despite her being confined to a wheel chair at that point.  So you see, she was made of stronger stuff than even she realized.  Snap!  And life is a gift and a blessing, not to be wasted on regrets, or ruminating about things we cannot change (image left).  Serenity is a great word–as in the prayer graphic to the left–its synonyms are harmony, peacefulness, calm.  I like that.

For me, my outward focus is on my story telling–with a particularly Promo2013RichardArmitage34byRobertAscroft-Sep0713ranet-crop-hi-res-shrpRevhandsome and talented fellow as my muse and preferred leading actor in my stories, the British actor, Richard Armitage (RANet image right).    And my late father was a Michigander.  And way back on my Dad’s side of the family in 1803, we were British–so I come by my stiff upper lip stoicism naturally.  And you see, I am the type of person who does not like to dwell on my health problems–I feel that focusing on my pain and suffering is a self defeating proposition for me.

I prefer taking  my meds and various palliative body wide lubricating treatments and being upbeat while focusing on the positives in my life, of which there are many–starting with my wonderful loving hubby, our great extended family,  and including my many lovely friends across the miles whom I have met through the British actor Richard Armitage Fandom  and writers’ sites.

So I will continue to keep my “Something About Love” groove going here on my blog and on my Wattpad story site –with story posts once a week and an RA essay in between.

Oops!   Gotta go now.  My hubby is home from running his Saturday morning errands as I finish writing this. *wink*

P.S.  I’m still trying to decide which of my original or fan fic stories to  serialize next here on my blog and simultaneously on my Wattpad site.  So in the meantime, maybe I’ll try to add some stories to my Wattpad site that were serialized here on my blog before I launched my Wattpad site.  Which means that I might not have a new story starting to serialize here for a week or two.

About Gratiana Lovelace

Gratiana Lovelace is my nom de plume for my creative writing and blogging. I write romantic stories in different sub genres. The stories just tumble out of me. My resurgence in creative writing occurred when I viewed the BBC miniseries of Elizabeth Gaskell's novel North & South in February 2010. The exquisitely talented British actor portraying the male lead John Thornton in North & South--Richard Crispin Armitage--became my unofficial muse. I have written over 50 script stories about love--some are fan fiction, but most are original stories--that I am just beginning to share with others on private writer sites, and here on my blog. And as you know, my blog here is also relatively new--since August 2011. But, I'm having fun and I hope you enjoy reading my blog essays and my stories. Cheers! Grati ;-> upd 12/18/11
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25 Responses to Sjogren’s Syndrome and Moving Forward, September 12, 2013 Gratiana Lovelace (Post #447)

  1. Thank you for that informative post, and hugs to you, Grati! I am glad that finally you have a name to go on and no longer have to guess constantly what it is that’s causing all these problems. These things happen and all we can do is roll with the punches, so to speak. One of my friends had been on the kidney transplant list for over 16 years and when he finally got his kidney two years ago, he almost died again and again due to complications. Yesterday, he met with a friend whom he hadn’t seen in decades, before he’d gotten so sick (although he’s now on the mend) and his friend said it succinctly. “Time flies when you’re alive.”

    And it’s what we do during that time that matters. Thank you for your stories and your blog, and thank you for sharing your muse with us. **hugs!**

    Like

    • Hi Velvet,
      Thanks for your kind note! Yup! One just has to keep going. And of course, there are always chocolate and RA in the world. Snap! Ha!
      I am heartened to hear that your friend you mentioned is continuing to improve his health. Love his phrase, “Time flies when you’re alive”!
      Cheers and Love! Grati ;->

      Like

  2. Perry says:

    I get so angry at the arrogance of some doctors who think they know it all. The first specialist you went to seemed to ignore the nurse practitioner’s suspicion. But knowing what you have is more than half the bettle,soI hope the treatment works with minimal side effects.

    Like

    • Hi Perry,
      Thanks for your nice note. I hear you about Doctors. But they are just people, too–with foibles and biases. That’s why we have to be our own best advocate for our healthcare.
      I start my new med today after noshing on some breakfast at work. The pill is supposed to work quickly to lower my blood sugar–hence the reason for me taking it after I eat. So at least I will be around other people who can call 911 if I have a bad reaction to it. And I will monitor my blood sugar and blood pressure regularly. I have a neat little wrist cuff for the blood pressure cuff. It works like a charm. Snap!
      Cheers and Love! Grati ;->

      Like

  3. Perry says:

    I meant “half the battle”

    Like

  4. Servetus says:

    I’m glad you have a diagnosis and some answers, and so, so sorry it has the indeterminate quality of an chronic auto-immune disease. I will definitely keep you in my prayers for abatement and calming down of symptoms and learning ways to cope. And I hope you keep doing what you love. My own experiences suggests that that makes a lot of things easier. Big, big hugs!

    [To raise awareness of some of the things you’re talking about, you might want to post your story here: http://fathealth.wordpress.com/ ]

    Like

    • Hi Servetus,
      Thanks for your kind words and prayers–back at you. I say that every day that I’m “vertical” is a good day. Ha! And palliative care, good friends, helpful meds, and healthy doses of Richard Armitage are all in my treatment regimen. Ha!
      Thanks also for the tip about the link for a blog hoping to counter fat prejudice in the health care industry.
      Cheers and Hugs! Grati ;->

      Like

  5. katie70 says:

    I glad hear you now know what the problem is. I feel for you on the meds end and hope the new one works when you get it. I have been trying for also a year to find something that will cut back the migraines I get in a week. So far not good, the last one could cause eye problems and when I got bad eye pain I was off that one too. I go back on 26, September to try a new one, running out of things to try.

    Pictures of Richard do wonders. Take care!

    Like

    • Hi Katie70,
      Thanks for your nice note! I’m so sorry to hear about your migraines. I’ve only ever had one, but I know how indescribably painful that is. Good luck with your new meds! I will keep you in my thoughts and prayers.
      Love & Hugs! Grati ;->

      Like

  6. havenfan4 says:

    Gratiana, I am truly sorry for your suffering. I am glad you have an answer. Never give up that you will be free one day. We’re blessed with so many discoveries and ways to help those suffering with medical conditions. I have heard of it since a friend of mine had it.
    -Brooke

    Like

  7. Ania says:

    I’m so sorry to hear about your health problems, but I’m glad you know what it’s called. I hope that medicines and RA-therapy will be helpful. *Hugs*

    Like

  8. Kitty says:

    I’m glad you’ve a diagnosis and can now be on the road to better days. I’ve been worried about you, dear Friend. Hugs

    Like

  9. Pingback: Richard Armitage Legenda 96: Stuff worth reading | Me + Richard Armitage

  10. Fabi says:

    Hi Grati,
    I wish you hope and strength! If “plan A” didn’t work, the alphabet has 25 more letters. You’re in my thoughts and prayers. Take care!
    *hugs*

    Like

  11. Hi Grati, I truly believe that all things that is not of the Light can be sent packing and on its way. Never accept defeat about an illness. It is a temporary “appearance”. I am speaking from a metaphysical standpoint, so most of the time I get sidelong glances from people.
    I am sending you lots of love and hugs!

    Like

    • Hi Xenia,
      Thanks for your lovely note! I continue to keep on, keeping on. And I love your charming blog with beautiful flowers, and recipes, and feminine design sense, and book and movie reviews, etc. I always come away with a smile on my face.
      Love & Hugs! Grati;->

      Like

  12. AgzyM says:

    I’m so sorry Grati! Those autoimmune diseases are horrible, why doesn’t the body just want to play along :( Hugs!

    Like

  13. Pingback: WCW: Reading the Fine Print of Life, May 27, 2015 Gratiana Lovelace (Post #754) | Something About Love (A)

  14. Pingback: Thursday’s RAndom RAmbling thoughts from Grati-land, April 21, 2016  Gratiana Lovelace (Post #901) | Something About Love (A)

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