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Thursday, September 24, 2015

The Last Few Months

Seems I'm back after a long few months.  Life just didn't allow me the time or clarity to post anything recently.  I have to be honest I'm still not experiencing the clarity of mind that I would want, but such as life with Mutliple Sclerosis.

Here are a few updates:
  I moved my daughter down to college in August. She is 4 hours away and it feels like she is a whole continent away.  She is my hero.  She has taken this new challenge on and is thriving through all the stressful, sleepless nights of studying.  She has her eyes on Johns Hopkins for med school.  Did I ever mention she is a Neuroscience major?  Most people think she chose that line of study because she grew up with me and M.S., that may be partially true, but she also has an insatiable need to know how our bodies work.

The fifteen year old has switched her focus from all dance to theater. She is determined to be on stage in New York someday,  This girl has a talent for everything creative.  Writing is becoming a passion for her and let me tell you she is good.  She wrote a fictional story about an abusive mother who turns out to be a serial killer.  At one point the teacher actually wrote on her paper "oh dear, I hope this is fiction?"  Well duh.  I told her if your creative writing teacher doesn't question your home life then your not doing it right.

My parents are in the middle of a move to a new home that has been a total cluster fuck from the get go. They decided to downsize due to my Dad's health. They had quite a bit of land and a larger house. It breaks my heart because this was my Dad's dream home when they moved in 15 years ago. He worked so hard his whole life and accomplished things most of his family couldn't.  He never graduated high school, but worked his ass off, holding sometimes two and three jobs.  When he had to stop working due to Rheumatoid Arthritis and IPF (hardening of the lungs) he was lost.  This house became his sanctuary. Thanks to my Ma and her skill with plantings the property looked like a park. I took him aside and said, "I know this is not ideal or where you thought you would be at this stage of your life, but I'm here and will help make the new house a home for you".  I have only seen my dad cry a few times. He didn't cry then, but his eyes teared up and that kind of broke something in me.

I'm still taking my Tecfidera twice a day. I'm still itching like a dog with fleas from it, but at least I don't to poke myself with needles anymore.   I feel like my eyes are a bit jacked up from from this stuff, but I haven't made a doctors appointment. I will soon.

So there you have it. My recent life in a blog post. So exciting right?

Thursday, June 4, 2015

I run....

I haven't written about running lately.  I've been doing it, but just not very good in my opinion.  I get so frustrated with myself.  I feel like I'm going backwards instead of progressing. My pace is a slow 12-12:30/mile lately. It used to be in the 10s and 11s.   I work so hard for every stinking mile I do.  My energy levels have plummeted to a new low lately and just keeping up with my daily life is hard, let alone trying to run.

I keep telling myself not to complain, that I'm lucky to be able to run. 
Then I get pissed! Why should I feel lucky I can run?  Why should I feel grateful to do something others can do without even thinking about it. 
Then I feel guilty because I know that not everyone who is afflicted with Multiple Sclerosis can walk let a lone run. 

Yikes! Who knew a three mile run could involve so much drama?  In the end I am grateful I can still get about on my own for now.  When I run my slow three miles I'm doing it for all the times I wasn't able to run.
I run for the days when I won't be able to in the future.
I run for therapy.
I run for focus.
I run to hide from M.S. even for a little while.
I run to feel strong even though I'm not.
I run for everyone who can't walk let along run.

I run because I love being in park navigating the trails. I hear the birds in the summer and feel the snowflakes on my eyelashes in the winter. It is my heaven and haven. 
In the end I am grateful I can still run.

Thursday, May 28, 2015


I am taking my 17 year old daughter and niece to a Lana del Rey concert on Sunday. I love live music and was so excited about this  six months ago when I bought the tickets.  Now? I have been obsessing over every aspect of going.

The drive is about 2 hrs.
It's outside and we have general admission lawn seating.
Is it going to rain?
Will the hill be muddy?
The concert is sold out.
What should I wear? I don't want to look like a mom trying not to look like a mom.
I don't know where the bathrooms are. 
Am I going to be able to stand for all those hours?
I have to drive home in the dark!
Blah blah blah and so on.......

I'm truly nearing panic critical mass here.  This all goes with my M.S. experience.  I tend to shy away from crowds and unfamiliar places. The concert venue is is not unfamiliar to me.  I have attended concerts there in the past.  It's actually one of my favorite venues.  I have always gone with my husband though.  Never by myself.

What was I thinking?  I was thinking this would be a great graduation present for my daughter.  I have never wanted my kids to see me shying away from things because of my M.S.  I want to be a strong role model.  I think I have.

Parenting with M.S. has been full of challenges for sure! It has affected every aspect of our lives since the day the girls were born.  The thing is kids are resilient, and this has been their "normal" their whole lives.  The have seen me at my lowest, being hospitalized, with tubes in my arms, not being able to walk, and being completely broken down.  But they have also seen me over come all those things and keep going.

So I will suck it up, put on my flower headband, and hope a friendly cloud of smoke wafts my way to calm my nerves.

Tuesday, May 19, 2015

My Mom coffession

I have been a bit obbsessed with the fact that my oldest daughter is graduating high school soon.  Too soon.  I am astounded about how quickly these school years have flown by.  I worry that I may not have been involved enough in her schools.  I worry that I haven't told her enough about boys.  I worry that I haven't taught her how to make rice.  Yes rice.  It's cheap and you can do a ton of things to liven it up.  Anyhow I worry.

Here's the biggest thing I worry about though.  My dirty little secret.  My unspoken shame.  I worry that I am losing my best friend. "Whaaattt?!" you exclaim  "She is your daughter she can't be your best friend."  Not true.  She can be my best friend, but I just can't be hers.  And I'm not, I know that.

The reasons I consider her my best friend should be pretty obvious.  We spend loads of time together.  We critique each others outfits.  Share makeup tips.  We even go halfsies on shoes and makeup.  She does wear them more than I do though.  We have similar taste in music and are always like "have you heard the new Yelawolf?" " I can't wait for the Lana Del Rey concert".  I know all the school gossip. We talk about her future. We cry together and laugh together.   I have tons of fun with her.  I love spending time with her. So yeah she's my best friend.

Now I'm not naive enough to think she tells me everything.  I know she has things she shares with her friends that are all her own. I also know I get on her nerves. When I say "no staying all night at the cast party I want you home at 1:00"  or "I need an address of where you're gonna be tonight".  I always get a little attitude about that stuff.  That's fine by me because in the end she is always home at 1:00 and I always have an address.  That attitude also reminds me that while I may think of her as my best friend she will always see me as Mom first.