May 3, 2020 a bit graphic

Day 3 of Brain Tumor Awareness month and I chose to share a picture from my v long recovery.

This photo was taken August 2011, about a week after my 2nd craniotomy. Not a pleasant sight.

Help

I really don’t think I have had any problems in asking for help.

Before diagnosis, that is.

I distinctly remember a moment in time December 2011. This was just 5 months after having 2 brain surgeries and also getting diagnosed with Cowden Syndrome. I wasn’t in therapy at that time either.

I was in my mom’s bedroom, and we were discussing something, that which I can’t remember. But I do remember this: Experiencing the most intense panic and fear and anxiety where I felt I was going to die. Literally die. Now, I had that terror right before being wheeled in to the OR on July 27, 2011. That I would not wake up.

But back to that day in December.

I knew I needed help.

And, I asked for help and received it.

#gratitude

Keep on

I must continue to remind myself that I am not complaining about my lot in life.  I am processing it as best I can.  That’s an entirely different story!

Last week I had to go to the ENT about my mouth.  Ugh and ugh.  I won’t go into details but the very next day I was hating life.  Big time.

But my mouth heals and I still put one foot in front of the other. What other choice do I have?  Also, July is a sobering month for me:  I was diagnosed with Lhermitte-duclos Disease and had brain surgery 9 days later.  It helps to write about it.

Daily Prompt [Present]

In this present moment I should be getting ready for church and pondering my Primary lesson.

However, after reading a few of the other blog posts this morning on the Daily Prompt I am now thinking about how difficult it is for me to be stay acknowledge the present.  My mind is flooded with moments before being wheeled into operating rooms, moments after having a CT scan, basically moments in the past.

I see it clearly.  I know what needs to be done.  I just don’t know h o w to do it.  How to get out of the past and into the present.

On funerals, dreams, and life

I just got home from a funeral.  A friend of mine died suddenly, way too soon.  He was a young father and it is just such a tragic loss.  Brought to my mind my dad’s funeral, what my funeral would have been like had I not made it through the craniotomies, things like that.  Just a heavy morning.  I know this is part of life, but it doesn’t make it any easier.  I think of my friend’s poor mother (she’s a widow) and the pain in her heart that I cannot begin fathom.  Heartbreak.

I began to see a new therapist a few weeks ago.  Her style is much different than the one I had been seeing, and this one is focusing more on trauma healing.  I like it.  I am on board.  There is such a wide array of things I need to address and heal from, this just fit perfectly. I have had two visits with her, and during both I was brought to tears. Sobbing. I am shocked that five years later I still fight with PTSD from the brain surgeries. Those few minutes before I was wheeled into the O.R. have fundamentally changed me. Dare I say permanently scarred me? I don’t know. But those memories and emotions are still down deep inside me and need to be processed and released. I am very much looking forward to this. What I find rather interesting is a day or two ago I dreamt I was caught in a torrential rainstorm. A huge downpour. Other people were near me, I was trying to find shelter from the rain, I didn’t have an umbrella, I didn’t know anyone around me. I did some research on rain in dreams, there is a connection here. The release of the brain surgery “stuff”, as it continues its course, and the downpour of the rain. Dreams are incredible.

While I continue to notice deficits, headaches, problems with my memory and auditory processing, I am thankful to work in Special Education when I can. I am very blessed to be in these classrooms and interact with the students. They make me smile. The help me focus. They motivate me to do my best always. These students have no idea how much they help me navigate life with brain tumors and a rare, genetic condition. The same goes for the person I am tutoring in English. The same goes for those I work with in my calling in church as Family History Consultant.

Life is weird. Life is not what I expected, that is for sure.

It just is.

Some things I have learned since I had brain surgery

• Listening to someone speak has taken on a whole new meaning.  It is not what it was once was, that’s for sure.  I don’t think I can find the words to accurately describe how difficult/troubling/trying it is sometimes.  Meh.
• When I was diagnosed in 2011 I thought my world ended.  That I was the lone person who would or could ever understand what it was like to live with Cowden Syndrome and Lhermitte-duclos Disease.  Rare Disease and all that.  1 person in 200,000 diagnosed, blah blah blargh.  Fast forward a few years later and imagine my joy when I connected with others like me!  Right?  Well, it has been a bitter pill to swallow to realize that these virtual connections meant more to me than to them.  Double meh.
• I want to do things for the continued health of my brain, yet unfortunately I just spend more and more time watching mindless television.  Why?  I know there is something deeper here, for sure.  Even from 2013 to today, I can see a start difference in my memory and processing functions.  Admitting to myself that I am terrified of my mental health future, and avoidance of all things tough is such a common reaction.

.

.

.

I mean, isn’t it?

 

Let go

I know it’s good to be busy.  But I have been so busy these last few weeks that I feel like I am forgetting something.  That is the oddest feeling.  I haven’t had any medical appointments for a while and instead of relishing the quiet, I feel anxious.  I feel like I am missing something and that makes me uneasy.  This sucks.  My life shouldn’t be this way.  Cowden Syndrome and Lhermitte-duclos Disease are here to stay, and in fact, have been with me since Day 1.  Yet since my diagnosis I feel this intense amount of pressure.  Mental, emotional, call it what you will.  I feel so much weight on my shoulders to manage everything, because it’s my life we are talking about here.  If I forget to do something, who knows what it could lead to?

I know stress doesn’t help anything.  I try to relax, I try to get good sleep.  I volunteer to pay it forward.  I just hate this feeling that if I “don’t do it right”, I will get sick again.  You know, I think that’s it.  I think I just had a mini-breakthrough.  All this pressure I feel, that I am putting on myself, managing these Rare Diseases that must be done “right”, is giving me a false sense of security?  That if I control everything (which I know I cannot) I can keep myself from getting sick again.  I don’t know if that makes sense or not.  The brain surgeries were just so terrible and the recovery was so painful, I’m terrified that I will have to experience that again.

This is where I must Let Go and Let God.  I am trying.  I don’t do it well, and I don’t do it perfectly.  But, each day I try.

Physical Therapy 4, or what I like to call Frustration 101

I missed writing about Physical Therapy 3 last week, so we’ll just have to call that a wash.

Just got home from P.T. 4.  I’m never not amazed at how much it takes out of me.  Physically and emotionally!  So much stuff.  So much balance.  So much brain.  So much frustration.  I want to take advantage of every moment I have there, for many reasons.  But, the main one is that I want my balance to get better.  And, I think that in just these last 4 visits I have seen some progress.  Of course there are variables, whether I worked before hand (I did today) and things of that nature.  I felt a little run-down going into the appointment and suffice to say, I am even more run-down now!  P.T. is hard!  But, I guess it’s a good run-down.  🙂

First the P.T. had me get on a stationary bike type thing to get warmed up.  I really liked it and remember thinking, “Man.  Sure would be great to have one of these at home!”  Ha.  Here are a few of the exercises he had me do:

1. Balance on a Bosu ball (upside down) doing squats
2. Stand with my thumb extended in front of me, moving it left to right and following it only with my eyes (very hard to do and hard to not move your head with your eyes!)
3. Stand on foam rubber square with one foot in front of the other.  Balance, and go.  No hands.  Eyes closed.  (Yah, right.)
4. Stand on one foot at a time, while throwing a ball into a net type thing.  This is probably one of the hardest things for me to do (besides the Monster Walks <?>) because 2 things are going on at the same time.  Balance on 1 foot without falling down.  Throw a ball into a net.  Do them both together.  The P.T. said he wanted me to do 5 in a row without dropping my other leg.  For a while (5 minutes.  Seemed like 5 hours!) I could do one throw, lose my balance.  Start over.  Rinse and repeat.  And, let me say something here:  I am not sure why certain people go into certain professions, but I am very lucky I got placed with this P.T.  He is outstanding at his job and I have found I look forward to going and seeing him each appointment.  Certain people excel at what they do.  He is one of these people.  He is very complementary (not in a condescending way) of how good I am doing with all of this balance stuff.  He hasn’t mentioned the “P” word (progress) but I think he may seem some small amounts.  And, he was going to say something earlier and I said to him, “Hold on.  You’re going to make me cry.”  Not in a bad way mind you, but in a I-can’t-believe-I-had-2-brain-surgeries-and-still-have-2-brain-tumors-and-here-I-am-today-doing-balance-exercises.  I know I have major PTSD from the surgeries still.  I know it.  I am working on it.

So, while I am mouthing off saying, “I can’t do this.  I can’t do this,” (because I really don’t think I can) but trying to laugh because I am uncomfortable (uncomfortable because it’s hard) I end up doing what the P.T. wanted and throw the ball 5 times into the net without falling over!  I did it!  Never did I imagine this day 4 years ago.  I guess that’s why I am so thankful that I have this blog still, because I am able to look back and see the scary times and see why it’s so important to write about the good times.  Or, better times.  Who knows what the future may hold, how this balance stuff will turn out or progress over time.  I need to make the best of what time I have there!  Right!

I know these bars well!

 

Physical Therapy

This morning I went to my first physical therapy appointment to discuss the issues I have faced these last several months:  balance problems, vertigo, and dizziness.  What a whirlwind hour!  Although I didn’t know what to expect, I had a rough idea of what it would be like once I got there, and I was right.  Thankfully, I wasn’t as anxious as I expected!

When I walked back to the gym I thought to myself, “What am I getting into?” – and then followed the PT back to the curtained area.  His first question was, “What brings you here?” and I went into my story:

• 2 brain surgeries
• 2 brain tumors
• Trouble with my balance
• Trouble with vertigo (although I’m thinking this could be medication-related?)
• Trouble with dizziness (which is kind of like vertigo, duh)

The PT had read the notes about me so had a rough idea of what he would be dealing with with me.  The first thing he checked was my blood pressure.  He mentioned some thing that had several names (I think I have read blogs about it?) and said that we needed to get a lying down BP and then I needed to sit up as fast as I could and we’d take another BP.  The BP lying down was 118 over something.  I choked and told him that that was someone else’s blood pressure.  🙂  Then, after a minute or two I had to sit up FAST and we took another one.  Guess what happened next?  “ER” on the machine, and it didn’t mean “Emergency Room” thankfully!  It meant a big, freaking, ERROR.  So after sitting for about 2 minutes I then had to stand up really fast and PT took another BP.  This was not my BP either!  117 over something.  Wow!  No white coat syndrome this morning, that’s for sure.  Whew!  Which I know is one of the big parts of PT’s job – to ease the anxiety of the patient.  I get that part.

Next, we went to the treadmill and I had to do the neuro tests that I just.cannot.stand!  On the treadmill (thankfully, it wasn’t moving), feet together, don’t touch the bars in front of you, eyes open…ready, set, go!  I had to stay as steady as I could.  Now, that may not seem like a big deal but believe me, it really is.  Then, I had to do those same things again with my eyes closed.  Then, with my feet tandem (left foot in front, heel to toe and then switched feet), and each time I was timed to see how long I could do each one.  My left side (movement, balance, etc.) is markedly worse than my right.  This Therapist was right there next to me as I lost my balance, etc.  I’m surprised that I didn’t lose my noodle this morning during those exercises. I told PT before that I was going to cry when we began all this.  And, I did not!  Praise all that is good and holy!

The last thing we did, that I really, really, really, didn’t like, I think was checking for BPPV (but I can’t be too sure?)…and I had to lay on a table with one PT next to me and the other PT behind me with these huge eye glasses on (so they could see my eye movement in great detail if there was any).  Laying down quickly wasn’t a problem, except it kind of hurt my upper back.  But, when they told me I needed to sit up fast, ugh.  I didn’t like that.  Not one bit.  This type of dizziness was on a whole other level compared to the dizziness I feel when I turn over in bed.  It was almost to severe vertigo and I felt like I was going to hurl.  It was major.  I don’t remember if I asked what my eyes did but there were some small techy-techy convos between both PT’s about my eyes.  Urg.

I get 10 visits, and in these 10 visits we will see what, if anything, can be improved.  We took a whole lotta baseline data this morning.  I told PT that my biggest goal is trying to better my balance.

Here’s hoping to BIG MONEY AND NO WHAMMIES!

From Australia

You may or may not have heard of Belle Gibson and her terrible scam she played on people stating she had brain cancer, blah blah blah.  The point of this post is not to go on about that, but believe me, I could…it’s to share Ashton’s post (her mother is another virtual contact mine who also has Cowden Syndrome).  I hope you will take a moment to read it.