Monday Motivation

I got up early today; early for me that is.  Set my alarm for 6:30 AM and I actually got up!  Put on some shoes, drank some water, kinda brushed my hair, and set out for a morning walk.  Put in a good 25 minutes so I call that a win!

I’ve noticed lately that I seem to write with no regularity whatsoever.  I almost wrote, “with no purpose”, but I realized that’s not true.   My purpose is to talk about Rare Disease.  To share about what life with brain tumors is like.  Before all this garbage, I (obvi) didn’t know anyone with a brain tumor.  But now, dear reader, you CAN say you know someone with a brain tumor: ME!  I’m going to make it a goal to write about my regular, boring, life when brain tumors aren’t on my schedule.  But, wait.  These tumors in my cerebellum are always on my schedule; whether I address them or not remains to be seen each day.  🙂

I started PT again this afternoon.  I’m excited (?) to see how it goes this time.

I am thankful I started this blog all those many years ago.  This has been such a great tool for me!





PS. What happened to the edit/spell check function on here?


On a walk

I’m trying to kick up my exercise again, because surgery last month put a wrench in things.

Thankfully, crazily, luckily, I got a quick walk in yesterday (I should be doing more intense workouts, but I’ll never stop being surprised at how much walking challenges my brain/balance, etc.) I was pondering about my life (blergh!) and I realized: WOW. I HAVEN’T HAD ANY COWDEN SYNDROME STUFF GOING ON THE LAST LITTLE WHILE. (Granted, surgery. But that wasn’t CS related technically.)

I felt like a normal person!  Albeit, for about 15 minutes.  But, still I’ll take it.

Because then I remembered I have my brain scan next month because gangliocytoma.  And, while choosing to have the prophylactic hysterectomy in 2013 helped tons (no uterine cancer here baby!), I still have to get a clinical breast exam every few months, in addition to the all the other scans.

I guess this is part of what life entails, right?  Little moments of breathing in between the big stuff. 

Or in my case, the big brain stuff.



Food for thought

Sometimes after I exercise, I think to myself:  “Crap, I have 2 brain tumors.  Man.  This sucks rocks.”

Other times I think: “Man.  I have 2 brain tumors and am feeling STRONG!”

Isn’t it funny what are thoughts can do to us?

Today I had both these thoughts, almost simultaneously.  Happy Saturday everyone!

Today was weird

Happy Caturday!  Ooooh, I mean Saturday.  🙂

I woke up this morning around 8, and fussed around after breakfast.  I knew I had several things I needed to do today, and I guess in looking back that started to overwhelm me.

How did I cope?

I laid back in bed and cuddled with Tiggerwigger.  Did you know also it’s National Cat Day today?



But then I got back up, folded laundry, and went for a walk.

Each day, I continue to learn how to push through the hard.

Not a Motivation Monday

Most days, Cowden Syndrome and Lhermitte-duclos Disease lay pretty quiet.  Except for the constant doctor appointments and dizzy spells, that is.

I try to live as normal a life as I can.  I exercise as often as possible.  I volunteer weekly.  Yet some days my medical status screams its ugly head and I’m knocked off my feet.

This week, I had had the following scheduled:  New psychiatrist appointment, new neurologist appointment (because I was without care for a few months), and a colonoscopy and EGD.

I knew this week would be busy, so I tried to ready myself as best I could.  But it’s only freaking Monday!  Why are things coming unraveled already?! I received a call this morning from the neurologist’s office.  The “doctor” (I use that term loosely) was reviewing my case and decided that she would not see me.  You see, I had been under the care of another facility (within the same system, just a different city) but when their neurologist left the clinic I had to make other arrangements for my health care.  Just because I have welfare insurance doesn’t mean my health suffers needlessly.  I am my own advocate.

I explained the situation, but of course it fell on deaf ears.  I was refused care.  And, I 1/2 bet it was because she didn’t want to treat me.  2 brain tumors and another Rare Disease.  I mean, who’d want to touch me with a 10 foot pole, right?

I lost it.  I won’t go into details of what I told this young girl on the phone and what I think of this doctor.  I didn’t cuss.  I wasn’t rude.  Just very expressive of how the decision of this so-called doctor is affecting my medical care.  And, my Disability claim on top of that.

My life is in limbo enough.  Now, add this neurology fiasco and I feel even more defeated then I do any other day of my life.

Happy Motivation Monday to you all!



Today’s awareness

My mind is mumbo jumbo right now.  Financial fear.  Credit card bills maxed out.  Delinquent credit cards?  Will I have to file for bankruptcy?  When will I ever get ahead?  Or even?

My mind continues to spin out of control.

I went to the gym tonight.  I realized I am very lucky to be able to walk.  And talk.  And exercise.  That I have some independence, even if it’s not exactly what I would like it to be.

On walking, “looking good”, and headaches

I had so much to write about yesterday.  My walk and how much I hate it, yet I see the purpose because it challenges my balance so much.  How I have been told by a few people lately, “But you look so good!” While that’s a kind thing to say, it doesn’t negate the trials and terror I deal with behind closed doors.

And then waking up to a pretty big headache, unlike one I’ve had in a long while, just ruins my entire day.  (Morning.  I am going to work hard so that it just ruins my morning).

As I’ve said many times, there’s quite a bit to manage with brain tumors and a rare disease.  Imagine if I didn’t have them…how much “easier” my life would be!

Is it really almost June?

I was just thinking to myself a few days ago, “Man.  I can’t wait for Fall.”  Coolness everywhere is what this girl wants!

Anyway, I know it’s been a while since I checked in.  Been really busy these last few weeks, which of course is a GOOD thing, but then my “recovery” after the “busy-ness” can take me a few days.  Even after 5 years, I am still constantly learning how to manage my life now.  Granted, I probably wasn’t doing too hot of a job before diagnosis.  Now, add all this to boot?  You see where I’m going, right?  Also, thank you to everyone who shared my crowdfunding campaign.  The deadline is in 4 days and I didn’t reach even 50% of my goal.  Darn.  Maybe I’ll try again another time.

I went out-of-town for a few days this week,  been able to sub for a few days too.  Fitting in exercising somewhere too.  Sometimes, managing the medical stuff really is a full-time job.  I had a few appointments a few weeks ago, so I plan to be writing about those soon.  And, remember when I said I went out-of-town?  Here’s a quick hint as to where I went:

PTNpinkHope you all have a great weekend!

Friday night accomplishment

I had a very rough week.  I worked at a temporary job for a few days that kicked my butt.  I am noticing certain things are continuing to get harder for me; and that frustrates the heck out of me.  I try to put on a good face as much as I can, but inside I’m struggling.  I knew that I had to exercise last night.  I had to.  But, I wasn’t sure I could make it.  I wasn’t sure I could drag myself out the door and to the gym.  I know it’s good for me.  I know there are many benefits of exercising.  I know all this.  But, when my brain is done for the day…it’s done.  I can’t change it, you know?


But I did go workout!  I am very proud of myself that I did it.  I felt so much better when I got home last night.  I am glad I found the strength deep down within me to do what needed to be done.

Because yesterday

Yesterday was pretty horrible.

Dizzy all around.

A very rough day for me.

But I wanted today to be different.

This morning I chose to get up and go to the gym.

I took a picture in front of the mirror there and here is the caption I wrote:

We have to push through our pain, 99% of the time.  But yesterday, I couldn’t push through.  I had to stop.  I had to breathe.  I had to recoup.  Sleep.  I had to rest my brain.  Recharge.  Today I made the choice to push through ALL THE BARRIERS and do what I needed to do.  Am I healed?  Of course not.  Am I perfect in dealing with this health stuff?  HA.  Am I still dizzy as hell today?  Well, it’s better.  I am thankful.  I am constantly learning (and hoping to grow, too) on this road I am NOW on.  It is bumpy a lot of the time, and to be honest, I am always a bit nervous to see what tomorrow will bring me.  But thank you to those who ride out the bumps with me and ❤ me through the hard times!