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.


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.


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.


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 choose (this was true at the time I ordered.  Their website has options now.) 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.



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!



Wow.  I can’t believe this month is already 1/2 over!  That’s so crazy.

I was looking at my calendar this morning and was a bit overwhelmed with all I have going on:

  1. Colonoscopy and EGD
  2. New therapist appointment
  3. Endocrinologist appointment the end of the month
  4. I had 2 different Neurology appointments scheduled, and they both fell through.  (It’s mildly concerning to me since I am living with 2 brain tumors and have had 2 craniotomies.  But, I digress.  For another post.)

I guess my point is that I’ve been forced to learn how to advocate for my health.  And, that’s one of my biggest takeaways since diagnosis of the brain tumors.  I get to share my experiences with you, and hopefully at least 1 thing I’ve experienced these last 5 years may be of some help to you.  To someone.  Somewhere.  That helps me feel that none of my medical experiences have been for naught.

I could tell you horror stories, and rest assured, I will continue to share them.  (Gross negligence of privacy issues to start.)

But, not tonight.  I am still traumatized from the colonoscopy and EGD last week.  I’m still irate for not being able to see a neurologist.  However, the main thing is even though I must endure numerous screenings and procedures (and those aren’t going away any time soon), I will not tolerate unacceptable behavior.  I will not waste my time waiting in exam rooms for doctors who don’t listen to me.  This is my life, this is my health; if you’re not meeting my medical needs, I refuse to endure and I will move on.

I never would have done that in my previous life.  I would have just gone along with things, because I had to.  Well, you know what?  I don’t have to do anything.  I don’t have to do anything I don’t want to do.  Has the diagnosis of Cowden Syndrome and Lhermitte-duclos Disease made me stronger?


I’m hungry

Considering everything I’ve been through, it’s completely understandable that I’m nervous about going to the hospital tomorrow.

I have had several colonoscopies already; however, that doesn’t make this any easier to bear. I am at a greater risk of getting colon cancer because of my mutated PTEN gene. It’s not fun. It’s not easy. I’m also having an EGD. Because polyps and Cowden Syndrome are BFFs. We know I have innumerable polyps already, checking their status in about 8 hours from now.

I have had a steady diet of Cucumber Gatorade and chicken broth today. I’ve experienced uncomfortableness today, too. Tomorrow, I pray for a skilled and clear-minded Doctor who will make sure I am safe and does what he needs to do for my health. 

I’m also dreaming of something Pumpkin when I get home. 

Going to try to get some ounce of sleep; a challenge amongst the hunger pains and anxiety of hospital- anything.  

Good night.

Not a Motivation Monday

Most days, Cowden Syndrome and Lhermitte-duclos Disease lay pretty quiet.  Except for the constant doctor appointments and dizzy spells, that is.

I try to live as normal a life as I can.  I exercise as often as possible.  I volunteer weekly.  Yet some days my medical status screams its ugly head and I’m knocked off my feet.

This week, I had had the following scheduled:  New psychiatrist appointment, new neurologist appointment (because I was without care for a few months), and a colonoscopy and EGD.

I knew this week would be busy, so I tried to ready myself as best I could.  But it’s only freaking Monday!  Why are things coming unraveled already?! I received a call this morning from the neurologist’s office.  The “doctor” (I use that term loosely) was reviewing my case and decided that she would not see me.  You see, I had been under the care of another facility (within the same system, just a different city) but when their neurologist left the clinic I had to make other arrangements for my health care.  Just because I have welfare insurance doesn’t mean my health suffers needlessly.  I am my own advocate.

I explained the situation, but of course it fell on deaf ears.  I was refused care.  And, I 1/2 bet it was because she didn’t want to treat me.  2 brain tumors and another Rare Disease.  I mean, who’d want to touch me with a 10 foot pole, right?

I lost it.  I won’t go into details of what I told this young girl on the phone and what I think of this doctor.  I didn’t cuss.  I wasn’t rude.  Just very expressive of how the decision of this so-called doctor is affecting my medical care.  And, my Disability claim on top of that.

My life is in limbo enough.  Now, add this neurology fiasco and I feel even more defeated then I do any other day of my life.

Happy Motivation Monday to you all!



Doctor, Doctor, can’t you see I’m running, running…

I was going to sit down and tell you about my GI appointment last week.

But then I got a call from the Dermatologist and received some news on a skin “issue” I have.  I thought she said at my appointment a few weeks ago, “Eczema”.  Turns out it could be a type of dermatitis, or some type of melanoma and I may need a biopsy in 2-3 weeks if it doesn’t clear up.

But I am not going to write about that after all.

You see, I haven’t been under the steady care of a neurologist for quite a while.  That scares the crap out of me.  Considering I still have 2 brain tumors.  But.  Maybe it’s fine, I don’t know.  I just don’t feel comfortable with it.  And, if there’s anything I’ve learned since diagnosis and the all the surgeries I’ve had is that I GET TO FEEL COMFORTABLE with what happens to me and my body.  My choices.  Which scans.  My decisions.  Which tests, etc.

I asked my primary doctor about a referral to a neurologist in one of the neighboring cities.  One office has their first available appointment 23 August 2017.  The next office’s first available appointment is 2 May 2017.  WHUT. THE. ACTUAL. FREAK?!

So.  My options are quite limited, don’t you think?  I’m grateful and so blessed to have insurance, but with the type that I do have, I often get pushed to the bottom of the barrel.  I’m terrified that I’ll suffer and have unnecessary complications because of that.  I’m not sure what’s weighing more heavily on my mind now…the dermatitis thing that may not heal, or the lack of someone watching my brain and my neuro symptoms.

Let’s see now, when’s my next doctor appointment?



Where is my Happy?

I had an emotional time at church this morning.

I want you to know…

I complain (here).  I scream (here).  I whine (here).  I cry (here).

But, I really do want to be happy.