Eff my life

I have a virtual friend who has offered me her expertise, advice, support, on this whole disability mess.  (THANK YOU!)

I chose not to read the judge’s 23 page denial because it will only make me angrier and more suicidal.

My virtual friend was kind enough to read the denial for me.

In part, the denial states that I was “fine and happy” in the courtroom.  (I was trying to be professional and not lose my marbles.  I almost did cause a scene at the end and I held it together because I was afraid THAT would be held against me.)

Over the years I have told my doctors that “I’m fine”.  The judge held that against me in part of his reason to deny me.

(I have only told my numerous doctors “I’m fine” because I AM TIRED OF TELLING THEM ABOUT MY PAIN ALL THE TIME.  MY CONSTANT HEAD PAIN, CONFUSION, MEMORY PROBLEMS, FINE MOTOR SKILLS PROBLEMS, ANXIETY, DEPRESSION, ETC.)  But, that doesn’t mean over the 6 years since my life got turned upside down I never told ANY doctor I am in horrific pain?  I DID!

The advocate told me if I chose to appeal then my case would go back to the same judge.  My virtual friend said that in the denial it says that it may not go back to the same judge.

So kids.  If you’re in the process of filing to disability, don’t EVER tell any of your doctors that you are fine.  And, don’t find someone to “help” you online.

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I know there’s only so many ways:

…to say, “I’m tired.  It’s hard.  I am scared.  I am alone.  I am struggling” because, let’s face it.  That’s pretty much the entire theme of this blog and I have pretty much got that covered.  If it can be said, I probably have already.

But part of the reason I continue this blog is so that if anyone happens to find it who’s tired, scared, or lonely too, will know they aren’t alone.

Here’s some things going on here as of late:

  1. Our refrigerator broke.  We have been living out of a cooler for dayzzzzzzzzzz.
  2. I’m dealing with daily migraine headaches
  3. I was rear-ended last week while I was in my car, parked.  Thankfully there wasn’t any damage to my car and I am feeling better now
  4. The unstable man at the doctor last week is still on my mind.  That incident changed me.
  5. My passenger side car door was dinged by an older man.  When I got out of my car to check if there was any damage, he started to verbally assault me in the shopping center parking lot.  Thankfully there were several people around who saw the incident and I thankfully had my cell phone in hand.  When I started to take his picture he quickly de-escalated.
  6. I haven’t done my taxes yet
  7. My car needs some desperate work to it
  8. I had my mammogram yesterday.  Those days are always heavy on my heart.  85% lifetime risk of breast cancer never gets any less scary.
  9. Out of the 2 pairs of jeans I own, one of them is coming unraveled.  It’s quite funny.  No, not funny – sad.

I can go on. But, I won’t.  That’s enough for me.  For today and hopefully tomorrow.

 

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!

 

Add another headache

Since diagnosis, I’ve come to realize how valuable my time is.

How come I didn’t have this mindset before?  Did I just live my life with my head in the clouds?  Not realizing ANYTHNG?!

Regardless, I know it now.  I’m fully aware and invested in what I choose to do, and where, and with whom.

This afternoon I had had a busy schedule filled with a couple of medical appointments.  This morning, a little bug in my ear told me to call the office to confirm my appointment.

Well, surprise surprise!  The doctor isn’t in the office for the entire month of October.  Did anyone call me to reschedule?  Heck, no.  Did anyone give a rip that I almost went all that way for nothing?  Believe me this:  Had I driven all that way come to find out my appointment had been canceled, I would have lost my noodle in that waiting room.  Believe me.

If I choose to waste my time, that’s my decision.  Not yours!  If I choose to read a book, walk around the block, mindlessly shop online…that’s all me!  You do not get to waste my time.  You do not get to pull me around by the neck forcing me to do what you will.

And, you know what this taught me?  I now must take more of my valuable time and call each and every single medical appointment before I go.  To make sure my appointment hasn’t vanished. Ugh.  Who has time to remember to do that?!

Lest my entire day be a waste of time, I had sushi with a friend of mine.  Now, I’m playing on iTunes and importing old music (Grease, Fantasia 2000, Phantom, Beauty and The Beast – so much music I had forgotten about!)

 

Pink Ladies for life!

 

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!

Let it freaking go

Yesterday I had an appointment with a new neurologist.

Now, before I write about my TWO HOUR wasted appointment, let me preface this by saying, “NO ONE TOLD ME THIS DOCTOR WAS ONLY SUBBING FOR ONE WEEK.”  I would not have wasted his time, OR MINE, by seeing him yesterday if anyone had told me this.  My time is valuable, whether you think it is or isn’t.

But, no.  Does anything medical run smoothly in my life?  Again, no.

Does most anyone do their jobs at the clinics I attend?  (Well, some do; I will say this.)

I am still so mad about yesterday and it’s been a whole 24 hours since it happened.

So, I am waiting in the exam room and in walks this doctor.  Dr. A?  I don’t even remember his name.  Seriously.  He sits in front of me and starts to ask me a few questions.  I can tell by his questions that he didn’t look at my records.  He continues to ask some basic headache questions, and I interrupt him.  “I have 2 brain tumors.”  And, he kind of reels back, in shock.  I told him I have “Lhermitte-duclos disease”.

HIM:  “What?”

ME:  “I don’t know if I pronounced it properly.  I’ll say it again.  Lhermitte-duclos disease.”

HIM:  “Is that like Cowden Syndrome?”

Oh my freaking gosh.  I cannot.  Seriously.  I freaking CANNOT.  I don’t care if you’ve never heard of it.  I don’t care if you never saw it in your training.  I am an established patient at this clinic.  YOU LOOK AT MY FREAKING RECORDS BEFORE YOU SIT DOWN WITH ME.

I wanted to clobber him.

He then asks about my symptoms: I tell him about the headaches, the dizziness, my hyper-sensitive hearing, my decrease in my fine-motor skills, etc.  And, we go through them one by one.  He’s firing questions at me, and I literally feel like I am before a firing squad.  I have NEVER experienced anything like this before.  And, trust me.  I have been around the block.  I have seen many, many, doctors.  This one takes the damn cake.

When he’s finally finished barraging me with questions, the first thing he says to me is, “You have migraines.”  My response, “No duh.”

Well, not really.  But, I wish it had been.

I wish I would have said, “Do you mean migraines as in something different from headaches post-craniotomy?”

Then he goes on and on about changing my meds, that I have carpal tunnel syndrome, mindfulness, and all this other crap.  I was expected to have a STAT EMG  in like 2 weeks.  But guess what?  I have a medical appointment already.  And, I cannot change that appointment because it will be weeks before I can be seen there again.  You know how THIS clinic thinks they are GOD and all revolves around them?  Well, guess what.  Every other clinic I go to think the same thing.  And I have learned that once an appointment is set, it’s set.  I cannot change the appointment I have previously scheduled.  This decision of mine DID NOT go over well here.  But, sorry Felicia.  What do you expect me to do?  I will not sacrifice the rest of my medical status for you.  Period.

I would totally be on board with all of this.  But, here’s the kicker:  He wants all these changes but then I HAVE NO NEUROLOGIST AFTER HIM TO FOLLOW UP WITH!  What if I have withdrawals coming off the Topamax?  What if I can’t tolerate the new meds?  WHAT KIND OF DOCTOR makes these HUGE changes and then would hang me out to dry?  This office hopes to get a new neurologist sometime in September.

And you know what?  I hope so, too.

 

Because I Have to Live

I have to work, because I need money to live.

I can’t work, because the headaches and pain and dizziness and memory problems and on…

But I have to work to live.

Living with brain tumors and a rare diseases costs money.

But I don’t have any.

Because I can’t work.  But I have to work.

Because I have to live.

WHEN WILL THIS CHANGE?

 

Name change, headaches, and food for thought

A few days ago I tweeted out that I need to change my blog name to, “Headaches for Heather”.  Because headaches.  All the freaking time.  And dizzy problems.  Added to memory problems, and the list goes on and on and on and on…

I put on a good front most days.  I have had 5 years of doing this so I am getting pretty good at it.  But, I’m tired, you know?  I am freaking tired.  I am tired of having to “act like I feel well” when some most days I am exhausted.  No one sees me on the inside, no one takes the time to ask how I’m doing, because I know they don’t “really want to know”.  Just the pleasantries.  So I do the pleasantries in response as best I can.  I am not bitter, just have accepted what now is.

However, when I am feeling a bit lonely (like I am tonight), I wish I had someone to call.  I don’t write this for pity from anyone, just documenting my life with two brain tumors and a rare disease and sharing my story in my little space of the Internet.  The reality is I don’t have anyone to call.  No one to have dinner with, go shopping with, etc.  And I have to pause and wonder why that is?  I had friends before diagnosis, or at least I thought I did.  Where are they now?  Have I honestly pushed them away?  I am always mindful of the things I now disclose to certain people, and even if others do bring up questions about my health I usually limit my responses (although it does depend on certain circumstances).  So, that leaves me the questions:  Did I bring this isolation upon myself?  Or did those once around me leave because my life became too hard for them to continue to share it with me?

This neuro and sudoku life

Tomorrow I finally get to see the neurologist.  It’s been several months since I had an appointment.

Sometimes, I feel like I am just complaining about the things going on with me; however, she needs to know.  I know there isn’t a magic pill, nor another surgery (at least I hope not) that she can give me to make this stuff go away.  These symptoms are just effects of brain surgery (2) too many times.  You know?  Dizzy spells happening more, headaches happening more, trouble walking and problems with my fine motor skills are happening more.  Just cerebellum “stuff” happening more and more.  My life will always be laced with brain stuff.  And, side note:  I cannot think of any other adjectives besides “stuff”.  Quite annoying!

My only resources are to “tuck and roll”.  Tuck and roll hard. 

And, probably more sudoku.

I have a headache

Last night I was awake until 2:35 AM with a terrible headache.  I even took a couple of Norco for help.

I have another one now.

I write a lot about my pain because this is my outlet.  I don’t really have anyone to talk to about this as few people understand chronic pain.

I continue to work on staying busy and having a positive attitude.

I don’t know if today is that day though.