Welcome to MS

A new part of my skill set is crushing the hopes and spirits of my children, then carrying the newly broken child to the bus stop, and stuffing him inside.  This is a valid parenting technique I hear.  It seems I am not the only parent who has ever forced their children to go to school.  So, welcome me with open arms, ye other hard-hearted parents, for I am one of you now.

It is mostly about self-preservation that I send them to school now.  Up until today I’ve been anchor-less when they’re gone, occasionally writing To-Do lists and not doing anything on them, sometimes thinking about getting a job delivering flowers. But now, well, ahem…

A couple germs have torn their way through the house bringing diarrhea, vomiting, sore throats and ear infections.  We are all “unsleeping” at night and shambling around to a mash-up of David Attenborough’s LIFE voice-over and Pinkie Pie singing “fruitbat round-up, fruitbat round-UP!” over and over during the day.

This weekend, between cleaning up rounds of barf, I noticed a swath of blurred vision in my left eye.  I’ve been through a few false alarms in the past two years, and so I didn’t immediately think “Here we go!  THIS is MS knocking.”

I should have.  Because it is.

As a recap, almost two years ago, I had one point of nerve demyelination that caused my hands and face to feel like fire ants had built a colony there.  It was MS except not multiple in nature.  An isolated, chaste first kiss if you will, of an autoimmune disease of confusing origins and with no known cure.

I went to the eye doctor dutifully on Monday to get antibiotic drops for what must be a simple scratch on my cornea.  Not so lucky.  No scratch and the attachment of the optic nerve looks healthy (!), so the mystery of the blurred vision requires more investigation.  Tuesday I trudged to another clinic for another dilation and retina scans and no less than six people shining lights in my eyes.  Final diagnosis: Optic Neuritis, or inflammation of the optic nerve, or demyelination.  Which, if you’re counting, is event number two and “isolated” becomes “multiple”.   Multiple Scleroses.

Hello MS.

I get to have another MRI in the next week or two to confirm this.  Then I get to have a discussion about disease-modifying therapies. I swear that has happened before. The first eye technician I saw on Monday patted me on the knee when it wasn’t a simple scratch and said “We will not jump ahead. One thing at a time, okay?”  Sure.  You betcha.

The second neuro ophthalmologist I saw yesterday, well, I feel a special hatred for her.  Everything she did and said was wrong, and if I hadn’t been focused on not breaking down, I would have punched her in the face.  In the same conversation, she asked me to envision my brain scan five years from now, perhaps with multiple lesions, and then said “This is good news,” but also that “MS is a diagnosis you carry all your life. ”  She finished with “Well, this wasn’t maybe what you were hoping for a first meeting.  Have a good afternoon.”  So, clearly she hasn’t had to break this news to someone before, and perhaps she was flustered, but really?  She’s worried about our relationship?  Yes.  Thank you, I will go forth and have a good afternoon.

So.  What now?  I don’t know.  I’m pretty sure life proceeds as it was.  I mean, my son hates school and my daughter still has an ear infection and a 3-month-old headache nothing can crack.  Will we pick up and move to New Zealand like I’ve been fantasizing?  Probably not. Will my vision come back?  Probably.  And having seen my body recover (eventually) from the initial demyelination, I can see a future, literally, that is clear.  Would I give my left eye for my daughter to feel like herself again?  In a heartbeat.  I wish it worked that way.

I’ve turned down the option of IV steroids that would supposedly hasten the recovery of my vision.  Not that anyone presented the side-effects to me when I was there, but I’ve done enough research to know that “vision problems, swelling, rapid weight gain, anxiety, depression, and acne” are par for the course.  Um, no thanks. I’ve got that stuff covered already, thank you.  I’m also far too vain to throw the doors open to “changes in the shape or location of body fat (especially in your arms, legs, face, neck, breasts, and waist).”

My husband worked from home and watched the sick kids while I went through the 4 1/2 hours of appointments yesterday.  It was comforting to know they were all safe, and having diarrhea, in the same space.  They all came to pick me up yesterday afternoon and it was like getting out of jail after a life-time sentence, walking out of that miserable clinic.  I did years worth of Purgatory time yesterday, I swear. Seeing my family in the sun after all that time, mostly alone, in dark, sterile rooms is one of my happiest moments ever.  My daughter in her post-sickness, log-like, video-zombie presence is keeping me calm and sane right now, except I’m reaching the point of disgusted rage at the “My Little Pony” theme song.  I wanted them to go to school today, and not just because they know how to buy things on Netflix now. I would have stuffed them both on the bus if I could have. I feel like diving into the well of too much information on what to do and not do, what to eat and not eat, find out who overcomes this shit and become her.  Since my daughter is here and I don’t know if I can “go diving” as it were and still parent, and because we’re a package deal still, I’ll drag her off to Whole Foods later and rove the store looking for homeopathic headache remedies and any product claiming to protect and/or regrow myelin.  That’s got to be in aisle six, don’t you think?  Right next to the organic t-shirts?  Or maybe there’s a special section with a sign, “Got MS?  Start here!”  One can always hope.

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2 thoughts on “Welcome to MS

  1. Oh Lisa! I don’t know what to say. Except that you are strong, I know it. And we women are made to face whatever life brings us, right? (Right? 😬) let me know if you need anything that i can help with. I’m great at ordering food deliveries!

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