Worry II

2016-01-01 20.33.44
The road to my neighborhood.  

I made the mistake of joining a group, Overcoming MS a month ago.  It is a mistake because they send out newsletters, which are almost always depressing with a heading that proclaims “Whatever It Takes” and articles called “Can You Stop My MS?”

This month’s newsletter begins by asking these questions:

Can OMSers eat gelatin? What’s the difference between cows’ dairy and that of goats and sheep? Should children of OMSers be on the OMS diet?

Already, my blood pressure is rising.  I use gelatin every day, sometimes twice.  Wait, is there something I should already know about cow milk?  I’m not even on the “OMS diet” and now I need to consider putting my kids on it?

Here was the kicker:  If you do have concerns about cognitive decline, or Brain Fog, you’re not alone. Up to 70% of people with MS report problems with thinking, concentration and memory.

Sigh.  I didn’t have concerns about cognitive decline a minute ago.  I know, I know, long-term MS can actually lead to shrinkage of the brain.  But, but….that won’t happen to me  and more immediate, problems with thinking, concentration and memory?!?  Disturbing enough to consider as a possible future…but what if I already have problems with that?  My word-recall is terrible.  I say things like “loan shark” when I mean to say “lone ranger”, “cereal” instead of “silverware”.  Yes, yes, I haven’t slept well in years.  (See Unsleeping.) There is no way I could fractionate the cause of any particular cognitive problem because of this.

Anyway, I broke my own rule and read through my messages yesterday morning instead of packing school lunches, and immediately got depressed and worried.  I dragged my feet, but still managed to show up at the gym, reluctantly joined in boot-camp warm-up. And my body went crackly and hot in a matter of seconds.  I’ve been running hot lately anyway, but I usually get a 20 minute head start in workouts before my hand hurts too much to hold things.  Ooof.  I stuck it out for about half of the class, didn’t cry, stopped for snacks on the way home and slunk onto my sofa for a pity party.  Hello Liz Lemon!

I set my best and brightest a distress beacon asking for their help weeding through the dross on the internet, to find out if I should/have to give up dairy.  I mean, I know I probably need to. I have in the past for this very reason, but it would be nice to hear it from the medical librarian my friend has in her pocket rather than from the guy on the internet who also advises using lemon balm poultices.  Or my old acupuncturist who believes you can absolutely control the course of a disease with your thoughts.  (Because that is how cancer is cured, right?) Ah, blerg.


Today is, of course, better.  I got up in the dark and ran two miles (only because a friend showed up at my door, but still…) My feelings of moral superiority are high right now, never mind that I’m back in pjs, trolling the internet, with my (dairy-free) green tea.  I feel it is important to maintain equal amounts of time shopping for triathlon gear and time spent training.  The sun is out and the birds on my street think it is spring, so I’m choosing to believe them.  Onward!



***I should have published this when I wrote it back in December.  I wanted to just have written it and then let it not be out there in the world at the time.  Now, though I’m worried again.  This time, for probably no good reason, and it helps to look at this and see that some things are cyclical, and that things will also get better.****

My neurologist warned me that I’d get panicked every time my foot fell asleep  for the next year.  Or every time the numbness in my stomach returned.  She’s right.

My first neurologist warned me not to panic because every time I got a bad cold or got overheated I might get reverberations of the original nerve damage sensations.  He’s right too.

I don’t panic.  At least not anymore. But,  I worry.

I. I worry about our kitten.  Why does he sleep so much?  Why hasn’t he attacked the Christmas tree yet?  Is he sick? Is he depressed?  Does he miss his cat mommy and family?  The vet threw some shade my way last week, saying I should have kept him quarantined longer away from my older cat, Seamus.  Seamie has vestibular disease and I guess he doesn’t need the stress of any new infections that gunky-eyed kittens bring.

II. My seven-year-old is sweet and smart and quiet and introverted and hates school.  HATES it.  And I’m torn every day about it.  I worry about his little heart.   The world is not soft enough for his sweet heart.  He borrowed a book from his teacher, then misplaced it.  He was devastated.  I found the book and smoothed the hurt as best I could, but only after two weeks of him crying inexplicably on the way to the bus every day.  I wish I could reach inside him and pull out the threads of worry from him.  I wish I could protect him.  I wish I could teach him to protect himself.  I wish the world were good enough for him. (Also, God, grant me the patience to listen to his dinosaur monologue without checking my phone.  His lists and books and drawings are so amazing are so important to him.  Please hide my boredom and silent my need to do something other than pay him the attention he deserves.  Maybe a little time off from purgatory could be promised? K, Thx.)

III.  A five-year-old with a three-month-old headache.  We visit Pediatric Neurology this Friday.  The same shared waiting room that I’ve already spent too much time in, but this is about her.  She’s had a head X-ray, antibiotics for any possible sinus infection, blood work.  We’ve tried upping her iron intake, her sleep, her protein.  We’ve cut out dairy, artificial dyes.  We’ve been to a chiropractor.  She takes magnesium every day.  We got a kitten. Everything seems to help, to be the miracle cure, for a day or even two…and then she’s back to crying that nothing makes her feel better and that she’s never going to feel good.  It isn’t escalating, and I was even thinking it had gotten a little better last week until she got a head cold and we’re back to miserable.  The real shame of it is that when she feels good, she’s got the energy of a herd of wild horses.  It is blinding to witness.  But our new normal is a tired little girl who only wants to lay on the sofa.

IV. The death of a friend who just couldn’t bear the weight of the world any longer.  She burned so, so bright.  And now she’s gone.  And I don’t skate in roller derby or sing or write poetry or am able to pay tribute or lend solace in any way other than a hug and a donation.


I don’t have any decent course of action.  My stomach got numb last night, a particular twitch I haven’t felt in several months.  And I know I’m getting the cold everyone else has, and that this isn’t new or worthy of  worry. However, the reality of not knowing when or how another relapse will strike, hit me hard.  It’s not just the having this demyelinating disease, because right now my day-to-day is almost MS free. It is the uncertain future, something that was always a truth, but now just much less easily avoided.  My vision is almost back to 20-20 (with super power contacts, of course), but with a distortion that makes the world seems all that more shiny and alive.  Like watching a 3-D movie.  Like having things show up with the faintest halo of light that you mistake as being a sign of glamour or meaning.

I have another eye appointment this week to check my field of vision.  I found a different neuro-ophthalmologist to see than Dr. The Worst. It is in the same building, though.  The same waiting room I’ve sat in with my daughter.  The same place I had already know will be my personal hell. Just me and a sick kid with a bad headache, waiting here.   The visual field test is only about ten minutes, but I have so much invested in needing and wanting “good” results, it makes my stomach hurt to think of doing it again.

I’m back to lifting and burst-type fitness with my Fit Moms.  I want to be strong enough that when it comes time to film another adaptation to Lord of the Rings, my obvious strength will have Peter Jackson picking me out of a crowd to be Eowyn.  That and my light saber sound-effect skills.  (It’s a complicated dream.)  It is a huge boost to mind and body, to lift heavy shit and sweat hard.  To know that I ‘m strong enough to carry my kids still.

So we’re limping along with colds and headaches and I am so ready for the house to be filled on our annual Solstice party, but I don’t need Christmas to come this year.  Which is heretical coming from me.  I’m that one who loves to hear the carols in October.  Usually.  It’s too much this year.  We did it all last year and I want us to do almost nothing this one.  I caved to the kids’ nagging and brought up the tree and we started decorating last night.  They’re so full of life.  They want to decorate the whole house.  They want to make gingerbread houses.  Many, many times.  (Candy, duh).  She wants a big Santa face to hang up.  And you know what they want for Christmas? She wants a candy cane and he wants some more blank books for the encyclopedias he writes and illustrates.  Oh my heart.

I’m clearing out the freezer a couple dishes at a time from another era when I had this homemaking thing down.  The kids have lunches that look like I raided a gas station on the way to school.  I’ve been staying up late reading “Being Mortal”  and “The Hidden Gifts of The Introverted Child”.   Trust me, it is better than the news.  And worrying.  About my babies, my family, my health, my friends.