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.

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I mean, isn’t it?

 

2015 in review

The WordPress.com stats helper monkeys prepared a 2015 annual report for this blog.

Here’s an excerpt:

A New York City subway train holds 1,200 people. This blog was viewed about 7,100 times in 2015. If it were a NYC subway train, it would take about 6 trips to carry that many people.

Click here to see the complete report.

Cue the gasp

I’m so frustrated right now. 

I am getting plagued again with headaches.

I wake up with one, I go to bed with one. 

And these aren’t mamsy pamsy headaches either. 

These are on par with the post- craniotomy ones I got years ago. Like when I was admitted to the hospital for the 3rd time.

Last night I had to take some Norco, the pain was that bad.

But the pain finally started to subside after a bit and I got ready for bed. I tried to set my intentions for today: I prayed, did some light stretching, put on some vitamin E for my eye wrinkles (LOL) and was looking forward to church this morning. 

Cue the gasp. I woke up with a terrible headache. 

I am emotionally exhausted. 

Is this all I have to look forward to? Life with constant headaches? I demand some relief because I’m way overdue. Period. 

Just like riding a bicycle

These last few months I have had a nice break from medical appointments.  It’s been really nice, I must admit.

But as they say, when it rains it pours.

Not even counting oral surgery or losing my hubcap last month, I got slammed this week.  I got sick and I don’t mean a bit sick, I mean siiiiiiiiiiiiiiiiiick.  All week I needed to get my blood drawn for my endocrinologist appointment tomorrow morning; I was only able to crawl out of bed this morning to get that done today.  Also tomorrow morning, I have my oncology appointment.  After my blood draw appointment I had a thyroid ultrasound.  There was so much wailing and gnashing of teeth.  I could not stop coughing.  At all.  At one point during the exam the technician asked me, “How long have you been coughing like this?”  (Some of the medical people on my “team” don’t like me coughing too much since I the craniotomies.)

Thankfully, I powered through.  The doctor won’t have the report by tomorrow, but at least he can read the results online.  I best be ready because I feel a firestorm coming!

Happy Freaking 2016

For the record, oral surgery is much better than brain surgery.

However, if I had had any vote in either matter I would have vetoed both!

Just call me Debbie Downer

I haven’t written in a while, because I just don’t know what to say.  I try to be positive most days.  I try to keep a smile on my face and take one day at a time, because let’s face it, that’s all any of us have anyway, right?  But, I have been quiet lately because I don’t want you to think I am a complainer.  Surprisingly (to me), I have held back.  Usually, this blog is my safe place to let it all out.  To scream if I need to, to cry as well.  Suffice to say, there has been a lot of screaming and crying lately.  Things are getting much worse financially for me and I don’t see an end in sight.  I’m not trying to sound dramatic I am just being real.  I am not able to maintain full-time employment (for many reasons), I don’t have enough income coming in to cover my basic necessities, let alone a new pair of pants and/or shoes that I desperately need.  (Last week I broke a tooth and found out I need an extraction and implant.  It will cost $3,000 to fix.)

A few months ago I qualified for state help, but made “too much” last month (I am thankful that I am able to sub some days!) and now I qualify for $17/month in assistance.  I never realized how money is connected to everything and if you don’t have enough of it it can ruin your life.  My mental state of mind has never been more fragile than it is now.  I have eaten terribly lately because of the stress of not having enough money for my living expenses.  Getting diagnosed with Cowden Syndrome and Lhermitte-duclos Disease has ruined my life.  Plain and simple.  I don’t see how my future will ever be any different from what it is today.

 

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.