Triumphs and Setbacks

I’ve had an incredible, note-worthy week.

Most remarkably – Last Thursday, my nutritionist gave me a miracle supplement.  It’s disgusting because I have to suck the coating off of the pills to stimulate bile, but I would suck on those bad boys until the end of forever if they make me feel this good.  My stomach immediately got better and I have had seven straight days with NO TUMMY TROUBLES.  I have gained almost five pounds in one week.  For real.  It’s the birthday cake, friends.  Just goes to show how starved my poor little body has been.  I’m not naive enough to think this blessed bliss will last forever, but I am enjoying every precious second and morsel of food!  Food, glorious food!!

Close second – My sweet friend took pity on my poor, over-sized wardrobe and gave me a birthday gift card.  I cannot tell you the last time I actually bought NEW clothes.  If I start losing my pants due to the weight loss, I will go to a thrift store.  Buying new clothes was a different experience for me.  At first I was sort of intimidated, but by the end I was singing Lorrie Morgan’s, “I’m Looking for Something in Red” at the top of my lungs… or maybe just in my head, but still.  A full belly and clothes that fit.  What more could a girl want?

Setbacks – There have been setbacks, for sure.  If it’s not my stomach, it’s my swollen, painful parotid (salivary) glands.  I woke up Sunday morning with some massive ones and had to go to First Assist for steroids.  I despise medicine and hate how jittery it has made me feel, but I’m not in as much pain.  It’s often a trade-off with me.  Can I tolerate the horrible symptoms of my disease more than I can tolerate potential side-effects of a medication?  Real-life gambling, folks.  Jason probably wants the steroids finished so I quit jabbering so much.  Talking and eating.  That’s what I’ve done this week and it has been magical!

BIG NEWS

Today was not especially fun.  I had two follow-ups from the biopsy I had of my salivary glands last week.  I spent most of my day listening to the doors of doctors’ offices screech like banshees, but I digress.  I swear I will bring them some oil next time.

First of all, my lip is healing fine for the most part.  All of my sutures fell out long before they were supposed to, so I have a gaping hole in my lip.  See, I’m always special. But it’s slowly healing and just feels like a very annoying canker sore. The results of the biopsy definitely support Sjogren’s.  So, there you have it folks.  After years of trying to convince doctors that there is ‘something’ wrong with me, I finally have the official diagnosis of Sjogren’s Syndrome.  

Sjogren’s Syndrome is an Autoimmune Disease. As with most Autoimmune Diseases, the body mistakes its own cells as something to fight off and starts attacking itself.  I love the meme that I will censor slightly that says –

“Autoimmune Disease – Because the Only Thing Tough Enough to Kick My Butt is Me!”

In the case of Sjogren’s Syndrome, the body attacks all of its moisture-producing glands. My eyes are so dry that I can no longer wear my contacts and I am so thirsty ALL THE TIME.  My parotid (salivary) tubes get dry and form little stones and when bacteria gets behind those stones, the glands swell up and become extremely painful.  It also can affect many other areas of the body. I seem to have a fairly rare, but not undocumented connection to the stomach and random food intolerances.  My favorite quote from a fellow ‘Sjogie’ thus far is, “I hate getting invited to anyone’s house for meals because I have no idea what I will be able to eat that day.”  True, that.  It is a gamble putting anything in my mouth at any moment of any day.  The Rheumatologist is not entirely convinced that Sjogren’s is causing my stomach issues.  He says it might be, but it’s very difficult to prove that and fix it.  So, for now he gave me some info to read on a medication that would basically make my glands produce more moisture, but may make my stomach worse.  It really has to do with my comfort level in trying new medicines, and I’m so anti-drug, it scares the daylights out of me.  For now I’m just going with the flow and enjoying my tummy relief while it lasts.

1 Corinthians 13:12-13 (NIV) – “Now we see but a poor reflection as in a mirror; then we shall see face to face. Now I know in part; then I shall know fully, even as I am fully known.  And now these three remain: faith, hope and love.  But the greatest of these is love.”

This week I have experienced faith in the knowledge that God has control of my triumphs and setbacks.  I have experienced some hope in finally receiving a diagnosis.  I have experienced love in a kind friend and outpouring of prayers.  I have really felt ‘known’ this week, by the loved ones who know exactly what I need when I need it, by the doctors who finally recognize a problem, and by the relief of some of my symptoms.  If this is “but a poor reflection”, I truly cannot wait to see God face to face and be FULLY known.  Oh, how glorious!

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Author: Karina Baker

Hello, my dear friends! Glad to see you here. Thank you for reading about my beautiful rubble - my struggles with life, faith, and autoimmunity. Feel free to share your stories in the comments. My love and prayers to all of you!

2 thoughts on “Triumphs and Setbacks”

    1. Thank you for your comment. While I hate that you are in a similar place, it’s nice to have someone who can relate. Blessings on your journey!

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