There’s still time!

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There’s still time to order your custom shirt that will help me (this is a crowdsourcing event) AND will bring awareness for Lhermitte-duclos Disease and Cowden Syndrome. Click here to reserve your shirt!

Thank you!

Also, I have decided that I am going to donate a portion of the money raised from this campaign to Global Genes.

Fun Fact Friday 8/29/14

Have you heard of WEN?  Or Chaz Dean?  I may have written about him before; I am a huge fan of his products.  There is something about them that really makes my hair different (no joke).  Really really.

Even Mom has gotten on the bandwagon, albeit slowly.  (Mainly because I talk about Chaz, or because I have QVC on all the time, she’s bound to pick up on my messages!)

Last week I asked Mom, “What’s that smell?” (she was in the bathroom getting ready) -

Mom:  “Oh, it’s three sixty-nine.”

Me:  “WHAT?!”

(She meant Chaz Dean’s SIXTHIRTEEN.)  I tweeted this exchange to Chaz and he retweeted it!  Too funny!  :)

“If you stay too much in the past it’s going to keep you there”

Have you heard of the show Married at First Sight?  Now, I don’t want to debate anything on this show, really.  It’s just a reality show like all the others (to me).  But, I do admit to watching it and last night one of the “experts” said this quote and it really resonated with me.  Here’s why:

I know I am stuck on the brain surgeries. I know they paralyze me with fear daily.  I know that I must use every ounce of strength I have to overcome the terror from those 2 experiences and move on.  I know this.  I know it’s my past.  I know it was 3 years ago.  I know that today I am not having brain surgery (and I better not have to have another one, but that’s besides the point!).  I know all this.  My rational mind tells me this every single day.  “It’s done.  Move on.  Get going.”  But I am here to tell you it’s not easy, folks.  Sure, there are good days, and even better days.  (Yoga makes some days better!)  And in fact, there are some days, that turn into weeks, where I don’t think of laying on the operating bed being wheeled into the operating room.  That I don’t think of exactly what I was feeling minutes before that.  Saying, “I love you” to my Mom wondering if I was ever going to see her again.    This is all my past.  I get that.  But the problem is that I am living with 2 brain tumors and the unknown of having another brain surgery(s).  I know that’s the part of life we all must deal with – the unknowns.  I didn’t know I was going to get 2 brain tumors, until I did.  And, I don’t know I’m going to get breast or colon cancer, until I might.  Or will.  Or who knows.  This is a weird road to be on.  This is a weird thing to have to wrestle with every single day.  This is my cross to bear, just like we all have our crosses.  These are mine.  I get that.  I’m not downplaying anyone else’s.

So, to the point of the quote:  If I stay too much “in” the brain surgeries, it’s going to keep me there.  How true is this!  It was magic to my ears, really.  But, no amount of Yoga, or substitute teaching, or shopping, or anything will magically “snap” me into the present.  If there were, I would have snapped that band years ago.  I’m sure if I wasn’t struggling so much financially it wouldn’t be so difficult to leave the past in the past. If I felt some semblance of my life “before surgeries” I probably would feel more confident in the direction my life is presently.  (Isn’t it funny how much stock we put into money? Or employment?  And when those are “taken” from us how much it rocks all we thought we were?) – in fact, maybe that’s the root of things.  That since I’m no longer working (I do substitute teach but I don’t really call that gainful employment) THAT is where I am stuck.  Or WHY I am stuck.  I don’t feel confident in my abilities as an employee, and to be honest, I don’t feel confident in my abilities (that’s not the right word but just work with me here) as a woman.  But every day I try to do this. I try to leave the past in the past and get IN my present and future.  And yet every day feels like a failure.  Utter failure.

Cowden Syndrome robbed me of that ability.  That choice. That right.  Yes, I believe it is a right of every woman to be a mother.  Not that every woman treasures that right, but that’s another post, too.  That beautiful opportunity to be a mother.  And these dang brain tumors robbed my confidence.  I don’t know what the answer is.  I don’t know the magic elixir to “get on with it”.  Because if I knew what it was, I would have drank it years ago.  I guess I am tired of things being hard.  I am tired of being scared.  I am tired of feeling weak.I don’t know how to tie this post up into a nice little bow and say, “Well, here it is.  Here is how you leave the past in the past and just deal.” 

 

This is my life.  It’s real.

Guess I need more of that hope today.

Control. Thou hast none.

This week I have worked on a blog post about control, or lack thereof.  I never considered myself to be a controlling person; not by a long shot.  But Lhermitte-duclos Disease and Cowden Syndrome teach me that I CONTROL NOTHING.

I have quite a bit to say about this and all week I was planning on writing this morning.

Then, I woke up with another vertigo episode.  Very severe.  Is my cerebellum getting angry?  Tired?  Irritated?  Is there something going on with the brain tumors?  My gut says, “Oh no.  They haven’t grown in 3 years, so I’m in the clear.” 

However, another part of me says, “You haven’t had vertigo (like this, or ever) since the brain surgeries.  This would be right on track.”

My neurologist is out of the country.  But, the MRI he called for a few weeks ago is in process of getting approved/scheduled.  So then there’s that.

PS, please check out my advocacy campaign and consider buying a shirt if you can.  Thanks!

No Fun Fact Friday

I haven’t felt very “fun” lately, so I am tossing FFF today.

Maybe it’s because I have the mammogram next week and that “85% lifetime risk of breast cancer” just never goes to bed?  Or that I have an early brain MRI to check the brain tumors?  Who knows.  Regardless, something is off.

Here’s a quote from my Instagram account this week:

Yoga is amazing. It just is. Period. I’m so thankful I found a place that I can work on strengthening my balance because these effing brain tumors aren’t going to get me down! At least not without A FIGHT!  Last week I had gnarly vertigo and I’m struggling with my balance & dizziness. Have the tumors grown? Who knows. Is my cerebellum giving up the ghost? Dunno that either. I AM TIRED, so I can only imagine how tired my cerebellum is. So. What do I do? I keep fighting tooth and nail on this freaking balance stuff. Because WHEN the time comes – I hope I have established enough of a reserve to pull from.

Something kinda funny happened today while I was out running errands.  I got a phone call from a number that I recognized to be from the hospital, which I assumed to be confirming the mammogram on Monday.  After I answered the girl told me she was calling to let me know the technician was going to be on vacation next week and “did I want to reschedule my appointment?”  I was a bit confused because, although it’s a good thing that the radiology staff knows me by name, it was odd they were calling me to tell me she was going on vacation.  After I pressed her for a bit more information she remembered that I either “only liked” certain hospital staff or “didn’t like” certain hospital staff.  (Note: I know EXACTLY who I DO NOT like in the radiology department.  Too many pelvic ultrasounds gone wrong from a raunchy technician – you make sure you leave the room, after you dry your tears, with your head up, OUT FOR BLOOD.)  The girl I refuse to have ever perform another procedure on me THANKFULLY is not the mammogram technician.  Whew.

I was touched that the front desk staff had my back.  Really made me feel good.

Power Outages and Blogs

I have been up for the last hour because for some reason, when the electricity in the house kicked off it woke me up.  UGH.  In the last 10 minutes I have read 2 blogs posts that have moved me.  I wish I could have written these myself.  However, since I didn’t I would like to take a moment to share them with you. One is from a contact of mine living with a brain tumor.  What she writes comes from her soul, and mine, too.

The other is from a contact who is an advocate for her genetic syndrome.  I wish I could have written it, but titled it “10 Things Cowden Syndrome Has Taught Me”.    :)

Please take a moment to read their words.  It will give you a small glimpse of my feelings of Lhermitte-duclos Disease and Cowden Syndrome.

Fat Ass.

10 Things Lynch Syndrome Has Taught Me

PS:  I tagged this post with “hope” because both of my virtual friends give me hope to keep fighting with my head held high.

Fun Fact Friday 8/8/14

I don’t watch much TV.  No time for it actually.  The only shows I watch with any religiosity (is that a word!?) is Days of Our Lives, and even that is getting on my last nerve.  :(

I rarely watch reality TV.  Sometimes I’ll watch Dancing with the Stars or Survivor if mom has it on.  My family likes The Voice (I was #TEAMSHAKIRA but whatever) so I’ll watch some of the singing competition when they have it on in the living room, but that’s about it.  None of this garbage, and especially not this.

Do you want to know a secret?  Sssshh.  Don’t tell anyone.

I think I am addicted to thisI can’t believe it.  AND, do you know about this?

This is my first season, and I wonder….whoa.

No mas vertigo

One of my biggest fears since brain surgery is that at some point in my life my cerebellum will give up the ghost.  That it will say, “You know what?  I’m tired.  I’m ticked off that I was dug about for 13 hours and I don’t want to work anymore.  I’m out.”

Of course, I don’t know if brains work that way.  I know that thyroid glands do, because years ago I was told that eventually my thyroid was going to burn itself out.  And, it did.  (This was years before I knew anything about PTEN mutations and Cowden Syndrome.)

I have dealt with severe vertigo since Monday morning.  When I tossed and turned Monday morning my entire world (literally) began to spin on its hinges.  Monday night I had an even worse episode when I tried to get something out of the dashboard on my car.  Tuesday morning the same thing happened (Groundhog Day anyone?) so I went to the Urgent Care yesterday evening.  (I called my neurologist’s office and that’s what he suggested I do.)  After the doctor had me do all the neuro tests (I HATE those tests so much!) he gave me a prescription for a steroid and anti histamine (AND a shot in my bumm‼️) and said he was going to treat for BPPV, because he didn’t know if it was the brain tumors giving me grief or not.

I spent 2 hours at the pharmacy waiting for my meds (such a long story), it literally felt like the longest.day.ever last night.  I don’t feel better this morning.  4 1/2 more days of steroids.  Ugh.