Daily Prompt [Complication]

I could write about the complications of my brain surgery, or hysterectomy.  Or…any other thing in my life.

But I don’t want to focus on that this morning.

I just want peace.

I want my life to have meaning and I sure wish society didn’t place so much pressure expectations value  everything that matters on women being mothers.  What about those of us who can’t or aren’t able to have a child?

Lately, all I am seeing lately are “Mama” things, or “Mamacita”, “Wifey” or “Boss Mom” blah blah blah.  Do you know what I would give to be able to wear something like that?

It hurts.

Rather, my heart hurts today.

I just noticed a similarity between this (Single/Women who aren’t mothers) and the adult population of the Rare Disease Community.  I see so much about children with Rare Diseases, I wish people would realize know understand that there are adults who are diagnosed with them, too.

We are a forgotten bunch.  😦

#Hurt #Quotes #Love #Relationship Facebook: http://on.fb.me/13GS5M6 Google+ http://bit.ly/12dVGvP Twitter: http://bit.ly/13GS5Ma #Depressed #Life #Sad #Pain #TeenProblems #Past #MoveOn #SadQuote #broken #alone #trust #depressing

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Daily Prompt [Sleeve] – AND THE EVER-LOVING SYSTEM IS BROKEN!

Hello.  My name is Heather and I would like to welcome you to my blog.  Today’s post is full of anger and bitterness; thank you for joining me!  🙂

I have no connection to the daily prompt except that sleeve reminds me of peeved.  Pissed.  Angry.  Furious.  Frustrated.  MAD.  Irate.  And, we will continue from here:

I have 2 brain tumors and a Rare Disease called Cowden Syndrome, which you may or may not know.  What concerns me more than CS is the brain tumors I have, called Lhermitte-duclos Disease, or Gangliocytoma.  I’ve already had 2 crainiotomies and am currently experiencing more symptoms that are annoying and down right scary.  A few years ago I applied for disability, appealed, had an “advocate” (and I use this term loosely because I got snowed and he is a terrible excuse of a man) and after almost 4 years of the entire process the Judge finally denied me.  Period.  End of story.  Do not pass go and do not collect 200 dollars.  In part, he denied me because I was “calm and collected” in his courtroom and after my hysterectomy in 2013 I told a doctor on my team “I wanted to go back to work.”  Ugh, thinking about this again makes me nauseous and I want to spit fire.

Since the outcome, and well actually since I started to feel any semblance of a normal life (probably around 2012) I have worked my ass off trying to find a job(s) so that I can surviveDo you know how expensive it is to LIVE though?  If you have a job, be grateful.  If you have money, be grateful.  Be grateful for what you have.

Anyway, a few months ago I found another part-time job that is flexible and they understand my health issues, the brain tumors, the good days and bad days, the daily headaches, etc.  I am very lucky to have found this job.  And, guess what?  I made “too much money” in April and May and will lose my state medical coverage the end of this month.  WHAT IS WRONG WITH THIS PICTURE?!

And as I was running errands earlier today I ran across the booths offering FREE CELL PHONES TO ANYONE (who qualifies, whatever).  WHAT ABOUT ME?  WHY do I fall through the cracks?  I will not debate immigration concerns, illegal or legal, because that’s not my job nor is that my concern today.  MY CONCERN IS ME.  MY LIFE.  MY FUTURE.  I AM AN AMERICAN CITIZEN AND GETTING DIAGNOSED WITH 2 BRAIN TUMORS HAS DESTROYED MY LIFE.  WHY AREN’T I AS IMPORTANT AS OTHER PEOPLE?????????????????????????????????????????????????????????????????????????????????????

May is brain tumor awareness month.  Brain tumors are evil bastards that ruin lives.  Mine, included.  Please visit these links to find ways you can help.  Thank you ❤

National Brain Tumor Society

American Brain Tumor Association

Global Genes

 

 

 

 

 

 

Daily Prompt [Courage]

During my recovery from the brain surgeries someone told me, “Oh Heather.  You’re so brave.  I couldn’t do what you’re doing.”

Ugh, that comment still makes my blood boil, even years later.  I get that she was trying to be supportive or caring, but believe me that isn’t the way to go about it.

I am not brave.  I am not courageous.  I wasn’t climbing a mountain or swimming with sharks for Pete’s sake.

I was trying to not die.

Where, how, why, what’s the point?

I know we’re encouraged to have faith during our trials.

But, how do I get some?

I’m constantly nauseous because the realization is hitting me harder and deeper: I cannot afford to live.

Why would Heavenly Father bring me through 2 brain surgeries, and a host of other surgeries, for this?

I feel terribly guilty. I feel like and AM such a burden. No one understands the inner turmoil this brings me.

This is all my life is?

Daily Prompt [Miraculous]

While I get caught in some deep depression most days, I know there are many miracles in my life.  I could dedicate an entire blog to them.  However, not today.  I want to focus on my healing since my brain surgeries.  I know it is nothing short of miraculous that I am alive today and able to walk.

On Nerds and Lifesavers

“I have been given this product as part of a product review through the Chronic Illness Bloggers network. Although the product was a gift, all opinions in this review remain my own and I was in no way influenced by the company. “

When you suffer from chronic headaches, it can be a blessing and a curse at the same time. A blessing because you have to learn how to slow down and take time for you. A curse because the pain of the headaches can (and usually does) interfere with your life’s plans.

And by “you”, I mean “me”.

As many of you know, I have had chronic and severe headaches since my brain surgeries in 2011. I assume the migraines are worse and more frequent as a result of the surgeries. But, I also suffered from migraines before my diagnosis. I was horribly sensitive to light, sounds, scents, etc. And still am. I am a very seasoned headache sufferer and have been around the block dealing with them. A migrainuer, if you will.  🙂  I am dealing with, adapting to, and accepting the pain of my migraine headaches.  It’s very tough most days, but I try to power through.  However…

…luckily for me, along came Axon Optics.

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I wasn’t sure what to expect as I’d never been able to buy specific “Migraine” glasses before.  I’ve always had to use the darkest sunglasses available to me. While I would recommend these glasses for certain potential migraine situations, they weren’t a cure-all for me.

I had very high hopes I would be able to use these glasses outside, in the sun, while watching sports or walking. Unfortunately, the migraine glasses did not work for me in these circumstances. The lenses were not dark enough for me and it was quite uncomfortable to wear them outside. I had no choice but go back to my regular dark sunglasses for outdoor activities. Another negative thing I found is that when I wore them inside and had to look far away at something, it made me a little dizzy and the thing(s) I was looking at were blurry.  This happened once while I was in the grocery store looking across the aisles.  I knew immediately not to do that again.

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BUT, I did notice a huge benefit of these Axon Optic glasses on more than one occasion. I was at dinner with my mom and noticed I was beginning to get a migraine. I usually have my “go-to” things I do to try to stop the pain, but since we were at dinner I was a bit stuck. I put on my glasses and after a bit of time I noticed my migraine was significantly less painful.

When I am at church the room lights normally bother me. When I wore the glasses I noticed a huge relief of eye strain and I was immediately at ease. This is a big deal! I teach often and there have been many times over the years I’ve had to teach through a migraine. These glasses have been a lifesaver to me.

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How “nerdy” do I look? 🙂

 

There are several styles to choose from, and I chose the Jura frame because I thought it looked the most like the “Nerdy” glasses that seem to be popular lately. I was a bit concerned that they wouldn’t fit me properly, as there weren’t any measurements required or tips on which to lenses to choose (this was true at the time I ordered.  Their website has options now of frame colors and different lenses.) All in all I really like them and think they look “OK” on me. The glasses are very well-made, and don’t feel cheap or flimsy. Included with my glasses was a hard-shell black case with “Axon optics” written on the front.

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The bottom line is that I would recommend these glasses to anyone who suffers from migraine headaches. You might need to see how they best work for you, and in what circumstances. I didn’t stop getting migraine headaches, but I noticed Axon Optics migraine glasses did work in some cases to reduce my pain. That’s a win in my book!

 

Memory; Blessed

I was pretty fired up a few minutes ago.  I was talking to my mom on the phone, and then after we hung up we texted one another a bit more.  I literally could not remember if I had had her on speakerphone during our conversation.  (Now, it’s not “what” I couldn’t remember that is phasing me, it’s that I “could not” remember.)  Not a bloody thing would come to my mind and we had just spoken on the phone about 3 minutes earlier!  And I couldn’t remember if I had had the phone on speaker?  What the crap?

THEN, I couldn’t remember my password to a website I log onto often.  I mean, I visit this website daily and I couldn’t recall what my password was.  What is going on?!

But you know what?  As I was sitting here starting to become very anxious and worked-up, somehow I was led to the “Comments” section on my blog and I started to read your comments from the first days after diagnosis leading up to the first craniotomy.  Man, what a way to knock me down a notch or two.  Where I was compared to where I am today brings tears to my eyes.  I may not have any money and am struggling severely financially, and my memory is failing, but I am not recovering from brain surgery tonight and I have a roof over my head.  My cat Kona is to my right on the arm of the chair as I type this.

I am very thankful to be where I am tonight.

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?

 

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!