The lesser of 2 evils?

…but right at diagnosis (after the brain surgeries) I had 2 huge fears.  Fears that kept me up night:  that I would have to have the shunt and have to file bankruptcy.

Thankfully, I have avoided the shunt so far.

I met with an attorney today to discuss my bankruptcy options.

I feel: sad, depressed, scared, alone, anxious, and a ton of other emotions that I haven’t yet identified.

No one can tell me what to do.

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But, what do I do? 

 

MIA

I know I have been MIA; I have quite a bit of catch up to do!

I saw this quote on Instagram this week and wanted to share it.  It has been on my mind and sums up how I have felt lately:

“There are moments which mark your life.  Moments when you realize nothing will ever be the same and time is divided into two parts – before this, and after this.”

I don’t know who said this, but I really like it and it speaks volumes to me about the brain surgeries.  My life will never be the same again and I can definitively see it divided into two parts: before July 27, 2011 and after.  Lately, I find myself having more difficulty communicating (processing) at work.  I feel like I stick out like a sore thumb and that people look at me like I have 3 heads or something when I speak.  I feel foolish and that people humor me to my face.  I feel that my co-workers laugh at me behind my back and wonder what I am doing there.  I fear I will make a mistake.  I fear that my co-workers won’t and don’t understand me.  I fear that I sound like a fool when I speak (and don’t make sense) and jumble my words to try to communicate.  Things don’t seem to be going right in my brain.  Things are getting harder and I am scared.  Having a conversation with someone feels OK; it’s when I have to follow a list, lesson plans, verbal instructions, etc. is where I find myself having problems.

I do not like it and I do not know how to tell if this is really happening, or all in my head.  I do not want pity; I just don’t want to look stupid.  I would rather stay home and not do anything.  Where does that leave me trying to earn income to support myself?  If I cannot be a properly functioning employee?  What am I supposed to do?  And I am not yet approved for Disability so this adds heaps and heaps of anxiety to my dire financial situation.  Will this ease up anytime soon?

A bit more P.T.

Just came home from another P.T. visit. I am really lucky I got a few more visits approved.  This Therapist is outstanding, and I know I have mentioned that in earlier posts.  He is incredible at his job, and knows how to challenge my limits and get me right on the verge of tears.  Good tears, I guess, but I wonder is there really such a thing?  🙂

I have mentioned this before also, these brain tumors have robbed me of my confidence.  Confidence in my abilities to do what I once did.  Walking, especially, because of the damage to my cerebellum.  So, P.T. knows to go right to the heart of the matter and PUSH. ME.  I mentioned this morning that one of my concerns, fears, problems, complaints now with my balance is that I don’t feel sure-footed when I walk.  I feel like I am going to fall, especially when I am carrying something, or when I cannot see my feet.  It’s just reality now.  I cope, sure.  And, there is a lot of adapting.  But, I am in physical therapy to get stronger and learn some other skills, right?  So, guess what he made me do?

pic_PT

He put these foam rubber things in a straight line, gave me a box to carry, and had me walk across it.  Without looking down to see where my feet were.  I swear, folks.  It was one of the hardest things I have done in a long, long, time.  It sounds cheesy, sure.  But, try to imagine it.  I choked back quite a few tears.  I cannot put into words how difficult it was to walk across that, or how it made me feel when it was over.  Almost every single fear I have he magnified in this exercise, but for a greater purpose and I get that.  I get that it was pushing me through the fear.  Lots of fear.  I know I wasn’t 10 feet off the ground (and that I was always safe), but the fear of falling was still great.  I walked back and forth a few times, then thankfully we moved onto another exercise.  My mind was mush after that!  Couldn’t I have just done some sudoku instead?  LOL

When I got to the treadmill, he had another tricky thing in store for me!  I walked a mile on the treadmill, without holding onto the sides (so effing hard!) and he placed a sheet over the top of the machine so I couldn’t see my feet.  It almost made me sick to my stomach that I couldn’t see my feet.  I never realized how much I need to see my feet to get my bearingsWhen he took that visual cue away, it was painful.  I was literally sweating everywhere.  Kind of gross, actually.  I am mentally exhausted and I want to take a nap.  I probably need to push through this but I think I am going to listen to my body this time.  Sleep, I am coming for you in a bit!

Physical Therapy 9, where I worked my butt off today!

I wrote a post a while back about Lhermitte-duclos Disease robbing me of my confidence.  Confidence in work, life, etc.  But, thanks to Physical Therapy and to the P.T. (who is really awesome, BTW), I’m seeing continued progress and dare I say I’m gaining some confidence?  Progress is scary for me though!  I don’t know how to embrace this, if that makes sense.

Being around the P.T. raises my confidence, because he’s very adept in his people skills.  🙂  He says the right things to make me want to try my very hardest.  That’s the sign of a great medical professional, don’t you know.  At today’s appointment, he and I saw so much more progress in my balance.  He said something to me like, “Did you take a shot of awesome sauce before you came?” or something funny like that.  LOL.  It was really neat because I think he and I both could see the changes in me.  The balance exercises are getting a “tad” easier…I wonder if that means P.T. will have to start making them harder?  🙂  I almost started to cry again at the appointment today.  When I think about where I was 4 years ago, and where I am now, I get overwhelmed.

Here is the kicker though:  Why is it with change comes fear?  Why can’t I embrace change with all the faith in the world?  Why can’t I be joyous and free instead of feeling dread waiting for the other shoe to drop?  This is GOOD change, for Pete’s sake.  Is it because I’ll never be out of the woods with these Rare Diseases?  I’ll never be able to breathe a sigh of relief?  I just have to take my small victories as they come, I’m sure.  And, this progress with my balance is FOR SURE a huge victory, not even a small one.  I always leave the office sweaty, wanting to do more, and yet sad it’s almost over.  Is that weird?

Sigh

4 years ago today I had to have a 2nd craniotomy to fix the CSF leak coming out of my incision in the back of my head.  I still can’t believe I had one brain surgery let alone two.  In about a week’s time.

It’s unbelievable to me how much my life has changed since then.  And not in a good way.  Struggle and pain within my body (since surgeries); financial loss and hardship; fear of the unknown of what the future holds for me…just to name a few things.  The dark cloud is depressive today.

I hate it.

Happy Anniversary!

4 years ago today I heard the words that forever changed the direction of my life:  “There’s something there.”

I wonder if I’ll always be moved on this date, or once I hit the 5-year mark things will be easier?

Probably not.

Just got home from lunch with a friend – it was nice to spend time eating good food, “celebrating”… I remember so much about that moment in Dr. F’s office when I got “the news”.  My friend told me where she was when she got “the call” about me.  Most of the 9 days between diagnosis and the first brain surgery was such a blur, but I remember the terror and fear.  Today, I am pleased to say that terror is lessened.

I have to remember where I was to know which direction I must go.  Forward always.

 

Yesterday…

…I didn’t have a care in the world.

Today, I am overcome with fear about the 2nd brain tumor.  When it grows, how will I feel?  How will it affect me?  What will happen to me?  When will I know?  Will I change?  What will happen to my ventricles?  Will it be like last time?  Will I get hydrocephalus again?  Will I need to have a shunt put in? I’m afraid. I am really afraid.

Today, I really do not like having 2 brain tumors.  It is Thursday, so I think I will share this on The Twitter for #BrainTumorThursday.  How appropriate.  Although, I’d give almost anything for it NOT to be appropriate.

The End.

Garbage happens to EVERYONE

At times, dealing with Cowden’s Syndrome takes all my energy that I have none left to worry about the 2 brain tumors I have. (Wait. Is that a good thing or a bad thing?)

But when Thursdays come around I take to The Twitter and do what I can to raise awareness for brain tumors, rare benign and malignant ones, too.

This past Thursday I tweeted:

Brain tumors & #raredisease messed w/the WRONG GIRL! I’m mad & ticked off! #btsm #BrainTumorThursday #CowdensSyndrome #gangliocytoma #pten

And you know what? I am mad. Mad that I don’t have a good-paying job anymore. Mad that I don’t have the stamina I did before surgery. Mad that I don’t have the l life I once did. Mad that I don’t have a carefree attitude. Mad that I am struggling. Mad that I now have so much worry of the brain tumors growing or having cancer in my breasts or someplace else in my body. Mad. Just effing mad.

For these past (almost) 3 years, I have run on fear. Fear of brain tumor growth or cancer anywhere in my body. Fear of the unknown. Fear sucks. Fear is a nasty S.O.B. I get all that. And, what’s more, I get that as I’m writing this post: Garbage happens to EVERYONE. Anytime, anyplace, anywhere. It just so happened that mine was in the form of 2 brain surgeries a week apart and a diagnosis of 2 rare diseases called Cowden’s Syndrome and Lhermitte-duclos Disease that pretty much no one ever has heard of.

I get it.

But, I also get that for these past few days…I’m mad and it’s OK. I know how important it is to express my feelings and thoughts in a safe place (this blog). I no longer will ignore my feelings. I am mad about all this crap and I own it here.

It’s just an emotion

I saw the counselor today and I sure wish I was able to see her more often, but working it around my work schedule is hard. Today was hard because I am feeling guilty for feeling scared. I “was” rather. I was “should-ing” all over the place. I need to give myself more grace with all of this. I need help. I need more sleep. I need to exercise so that I can increase the serotonin or whatever ti’s called in my brain. But I’m scared to put more stuff “in” my brain. I’d rather keep to the natural stuff (turmeric, etc.) and not do the Lexapro stuff, but what’s going on now isn’t working.

It’s just an emotion.

I am scared. Scared of so much but I have to work on acceptance. This Cowden’s Syndrome isn’t going away and I have to learn to live my life WITH it. My fear is starting a pill is going to be a crutch that I will have to be on FOREVER and I don’t want that. Acceptance. Fear. Scared. Future. What will be of it? I just wanted to have the happy life, or what I thought that entailed. A husband and family. Is that too much to ask? Life isn’t without fear, of course. And life is about learning how to LIVE life – with what you are dealt. I am dealt this. Emotions come and go and I have to figure out how to manage mine and ideally I’d like to do that w/out meds. But I think it’s time to give in.

This is my new mantra

Enough said.  I may not do it right all the time, and fear is going to get me some times, but I MUST. BE. STRONG! I must live my life fully and I do not want to be that scared little girl who is fearful of every little thing.  I ran a lot on fear before July 18, 2011.  Now, more than ever I HAVE to be FAITHFUL and not FEARFUL.  This quote is fabulous.  I love it.