Gloomorous Scrumble

Gloomorous:  Laila’s word for the glow-in-the-dark stickers she loves.

Scrumble:  Laila’s word for “tickle”.

Last night my sweet son climbed into bed with us at some point.  In my sleep I turned toward him, felt his soft face and tussled hair and realized that  Sufyan next to me.  At which point he snuggled his cheek into my hand and then kissed my palm and said, “I love you, Mama.”

The babies I had are changing right before my eyes.  Those early days are gone.  I will never see my 1 year old Sufyan again, or my 1 year old Laila and  I admit I feel grief about that sometimes.  It’s like longing for a person I loved very much and want to see again.

I love and cherish the Sufyan and Laila I have now, though.   I am sure I will feel the same longing for these days of Sufyan at 5 and Laila at 3 that I now feel for their infancy.  I recognize my tendency to want to “keep” these moments forever for what it is:  conceptual mind keeping me from the gift of this present moment.  The past really is gone, no matter what a mother’s heart wishes it could hold on to.

Sometimes I use that pang of longing as an illustration of how attachment, even as love, can cause the mental acrobatics that make it hard to live in the moment at hand.  To be present and not attached, to love and not cling, to truly delight in these moments and yet allow them to pass with equal joy, that is freedom.  Yoga.

Yoga Sutra 1.12:  abhyasa vairagyabhyam tan nirodhah

In order to move in the direction of yoga and of certain yogic tenants, like non-attachment, I need to have faith.  “Shraddha” .

Faith is something my life is requires right now.  And to be honest it’s hard for me.  It is getting easier, however.  Or at least at times it seems to get easier in direct proportion to how much I can surrender to what is going on in my life.


What’s going on

After 9 months of illness and various diagnoses (EoE, Lyme, EBV, Mycoplasma pneumonia) I am facing a pretty serious new finding in my blood work.  It turns out that while I do have Lyme, I also have a rare infection called Brucellosis.

The best guess about where I picked it up is that I got it while in the Middle East from eating unpasteurized sheep’s milk cheese.  I ate quite a bit of that, to be honest, never once thinking about it being unpasteurized.  My infectious disease doc thinks that is the most likely source of my infection.  Of course, I have my own questions about this.  For example, there are plenty of folks who believe this pathogen is being transmitted by ticks.  I was bitten by a tick in April (though obviously I have had other tick bites in my life).  I can’t imagine why it wouldn’t be transmitted by a tick, it makes sense, except that Brucellosis is nearly eradicated in the US so the livestock that would potentially carry Brucellosis are not as likely to be carriers here in the states.

Regardless, I have it.  And I am really sick.  I am on 2 antibiotics for it (doxy and rifampin) and I have a bone scan tomorrow to see if the Brucellosis has infected my bones (Brucella is known to cause osteomylitis among other nasty things).  I have been experiencing pain in my legs and feet for some time.  Pain in my ribcage has been with me for about 6 months.  Luckily I have recently had an ECG that looked normal, so it is unlikely that the Brucellosis has infected my heart.  Endocarditis, and infection of the inner lining of the heart, is the main way this infection causes death.  The other way is meningitis, but I don’t have symptoms of that and hopefully the antibiotics will keep that from happening.

My kids also ate the same cheese.  Their blood work for both Brucellosis and Lyme will be back before the end of this week.

As for the other infections, Lyme is an underlying condition that is making the Brucellosis worse.  The Brucellosis is making me nauseous and has (in my ID dr’s opinion) caused the EoE.  The pneumonia is probably gone due to all the antibiotics (which I have been on, in various doses and types, since May).  EBV is likely a false positive as everyone in the world has some kind of titer in their blood for this common bug.

As I write this I am so nauseated that it is actually painful to be upright.  Thank god my mom is here to look after my kids as I try to get treated.  She has been here almost 2 weeks and has to leave Friday.  I am trying not to panic.   Even if the bone scan is normal, I am having a very hard time living my life right now.  What I need is to stay in bed.  What my kids need is their mom.   If I think about it all too much I get more nauseous, I guess because it’s so upsetting to me.    This is not how I imagined year 38 to go.  Even so, I am praying there are more years ahead for me.

Going to try to return to my yoga practice, now.  Back to the present moment.  Back to resting in non-attachment.  Sometimes it helps.




4 thoughts on “Gloomorous Scrumble

  1. This all sucks so much!! And I know first hand how exhausting and stressful it is to do research on your health problems and treatments and who the good docs are etc etc. You didn’t even mention that part! That said, I’m so glad you have years and years of your yoga practice to draw on for strength and in your mental toolbox. Tell your body for me that this is it. No more new diagnoses. Now its time to be on the upswing and heal! Thinking of you guys a lot…

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