Autoimmune Disease

Compass

Positive.

Active mononucleosis.

5th time since 2015.

Is it possible to have a permanent active case? The internet says yes. My rheumatologist (who I see on May 30th) wants to do research into it so she can better treat me on my appointment.

She’s requesting all blood work and labs since….? Um. I’m not sure of the start date…. Maybe this is how doctors feel when they can’t diagnose a patient correctly, and I don’t have sarcasm upon saying that. It’s hard not to know something.

As I think back to 2015, the tests that I went through to get my diagnosis of an autoimmune disease and fibromyalgia…. actually beginning 2013…. I never actually knew how much the hospital machines – the machines that took up an entire room’s space in which I was expected to lay underneath for up to an hour, or rushing into the ER with stabbing pain underneath my rib cage, getting poked with IV’s, blood and urine taken, CT scans done and being told “ok go home” with the exact amount of information I walked in with: bawling my eyes out – … I never knew how traumatized that was for me to go through until today. Still having the stabbing pains, but ok now with the answer of “costochondritis from fibromyalgia”, still having a ball of fire in my stomach but not quite knowing how else to explain it, still having headaches, and just feeling like complete shit. (Please excuse my French. This is getting frustrating.)

I called my primary, as instructed by my rheumatologist yesterday, to be treated for fatigue until I see her on May 30th.

I asked about my spleen. Since I have mono, I’ve tested positive so many times in the past 3 years, can your spleen stay enlarged? What do I do to keep it protected?

Here we go.

“Has anyone done an ultrasound on your spleen before?”

Just on my gallbladder.

Ultrasound on my spleen set for tomorrow. And I’m stressed. And scared that these answers that I’ve had for 3+ years are somehow not the only things that have been tormenting my body all this time.

Who knew getting mono in high school, when we were kids and thought it was funny, because it was “the kissing disease” and all anyone did was joke around about who you had been kissing, that it could cause this many issues? That it could possibly be the culprit of my Sjögren’s (internet study I read not long ago), it could possibly torcher my body with stabbing pains for…. for how much longer?

“Compass” -Zella Day

I will take the pieces, put them back together

Even when the grass isn’t green enough
Taking all the branches, build ourselves a mansion
Love you in the ways that you needed love
Where you are, I will be
Miles high, in the deep
Where you are, I will be
Anywhere, in between

✌🏼&💜,

Bailey

4 thoughts on “Compass

  1. I’ve missed so much. Been in and out of the loop myself, honestly. I hope everything went well with your testing and that it at least yielded some concrete answers. The human body is such a crazy thing to understand and I’m not even sure how doctors learn all these effects and whatnot, but I’m thankful for modern science. You have a wonderful smile, Bailey! Careful where you point that thing =P lol Also good to see your husband since, I’ve learned lots about him through you. I also noticed your little puppy friend in your pic too. He’s adorable!. *Rambles* Sorry! Take care, Bailey and stay in touch!

    Liked by 1 person

    1. You’re precious!!! I hope all is ok with you! I’ve been wondering, but I know you’re a busy man!!!

      All this testing this go round… doctors are here to help us get answers, but I no longer believe that we are meant to understand. Sometimes things are as they are, we fix them, and we move on! Or they are as they are, and we deal! It’s been a long road for me to have such a… bold and I would definitely call it debatable belief, but I also think most of us can agree that mannnnny doctors do not use their knowledge to further the health and understanding of our society unfortunately. And I hate that.

      Haha thank you so much!!!! My puppy friend – that’s Chachi! (I think!) I’m going to have to take a look at the pic again!

      My husband is a good man. I’m not sure exactly how he sticks by my side. But I think everyone is supposed to say that about themselves, right? 🤔

      So glad to hear from you!!!! Hope all is well on your end. I’ve been trying to write more, but I’ve been awful about hopping in and out so I’m going to set aside some time to go back and see what I’ve been missing from my friends here! 💖

      Liked by 1 person

    2. Aww that’s Chachi! (My puppy friend!) She’s been with me before allllll of this began. She’s her momma’s girl!! She will never deny a good napping partner!🐭😍💖😴

      She’s actually my doctor designated emotional support dog. Except it’s more emotionally supportive if she stays home. Because she’s not one to speed her wings outside of the house. Again, momma’s girl, she is!!!😂

      Liked by 1 person

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