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!

 

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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!

(Thankful)

I know how important it is to have a grateful heart.  I read about it all the time.  And, especially this time of the year it’s vital, right?  With that being said, I could start this post with all the things I am worried about:

  • My brain
  • No income to cover my bills; being destitute sucks and is so scary!
  • My gait
  • My health (covering it all)
  • My future (which will be covered in another post)
  • Status on Disability
  • My car
  • The next colonoscopy
  • The next EGD
  • The next mammogram
  • The next breast MRI (if I can fit into the machine)

Or, I could make a gratitude list.  We have all heard about them, right?  Have you ever made one? I invite you to leave in the comments one thing you are thankful for, especially this weekend.  Here are just a few of mine:

  • My nephews
  • Modern medicine (where I can have 2 craniotomies a week apart and be here to talk about it!)
  • The Internet (where I can connect with others who are living with Cowden Syndrome and Lhermitte-duclos Disease)
  • My cats Kona and Tigger
  • Same car (as above) – thankful it presently runs
  • Hearing the birds chirp in the morning
  • Food in the cupboards
  • Water to drink
  • Books to read

This list isn’t all-inclusive; I could go on and on.  But, I knew it was important for me to get a few things written so I have them to look back on.  This Thanksgiving was different for me.  It wasn’t ideal; it wasn’t the one I would have planned; I would have preferred to do something different.  But, that wasn’t in the cards.  I tried to make the best with what I had.

Funny.  I could say that exact, same thing about my life now with Cowden Syndrome and Lhermitte-duclos disease:  it’s not ideal; it’s not the one I would have planned; I would have preferred something different!  How ironic is that?!  Gosh.  As time goes on, and as I continue to write, I see more of these analogies of my life.  But, here’s the most important line and I almost skipped it over.  I tried to make the best with what I had.  Presently, that’s really hard.  (See worry list above).  I didn’t know how to navigate my life very well before CS and LDD, and look at all that’s on my plate now!  Sheesh.

Well, I began this post wanting gratitude in my heart.  I am grateful for all of you who follow me on this rare disease road, who pray for me, who are my cheerleaders.  I wouldn’t be where I am today without you.

Sigh

4 years ago today I had to have a 2nd craniotomy to fix the CSF leak coming out of my incision in the back of my head.  I still can’t believe I had one brain surgery let alone two.  In about a week’s time.

It’s unbelievable to me how much my life has changed since then.  And not in a good way.  Struggle and pain within my body (since surgeries); financial loss and hardship; fear of the unknown of what the future holds for me…just to name a few things.  The dark cloud is depressive today.

I hate it.

My week

All in all, this week was pretty typical for my chronic medical situation. I wonder if there will ever be any stability with Cowden syndrome and Lhermitte-duclos Disease?

Monday:  I had an appointment for a PET scan and a PEM scan.  I wasn’t clear exactly what was going on when I got there because I thought I was just having a PEM scan, which I affectionately call a “glorified mammogram”.  I arrived at 8:30 and was shown to a room that had a recliner in it.  I thought, “Hmmm.  This is already unlike any other medical thing I’ve ever had!” and the technician gave me the instructions.  First, she had to check my sugar (thankfully I had great veins that morning!) and it was 102.  I asked her if that was high, and she said anxiety can make it go high but it wasn’t too bad.  Whew.  Next, she brought in the radioactive sugar and said that it was time.  Dun, dun, dunnnnnn.  I didn’t even have a clue what that meant!  Would I feel anything?  Would it hurt?  She put it in the IV and then said I couldn’t move, to rest on the recliner.  No talking!  No playing on my phone, no reading, no nothing.  Just relax.  BUT GUESS WHAT HAPPENED?  I totally had to go to the freaking bathroom.  I could not relax for 30 minutes at all because I was worried.  Plain worried.  The technician got a bit snotty when I told her I needed to go (her response was, ‘Well, I’ll give you permission if you must, but we can’t wait because the sugar is already decaying’…Whut the freak?)  Anyway, I somehow made it through the 30 minutes and when she came back into the room and said, “You can move now” it took all my restraint to not r u n to the bathroom.  #RealTalk.

After all this, I had to wait another 30 minutes to percolate, I guess.  🙂  Was finally taken into the PET CT, which wasn’t a big thing because thanks to Chuck (what I used to call the brain tumor), I’ve had plenty of them.  Since I was still radioactive right after this procedure was the PEM scan, but can you believe the test was done at the end of a hallway?  There were people (read: a MAN!) walking into another room so he could totally see me taking my Dairy Queens out!  There was this accordion barrier thing to “shield” me but it was still totally a wonky set up.  I had to endure 16 minutes of this on each “side”.  Weird.  Are you with me?  (As it stands right now, I haven’t heard from the surgeon.  No news is good news, right?)

When I got home I had to stay away from my nephews for 4+ hours, then as I was detoxing I got 2 huge migraines.  Just crazy talk, you know?

Wednesday:  My neurologist has been on medical leave.  Not a big deal to me, because for the most part I’ve been stable.  Ha.  But I have weaned off the gabapentin and lowered the topamax because I really wanted to know what life is like not on those meds.  I knew the gabapentin was for pain and the topamax was for migraines.  And, I hadn’t really been having either (for the most part) and since Dr. D was on leave, I just was going to take care of my biz like the champ that I am!

I called the office on Tuesday and left a message so it could be documented that I had discontinued the medication.  Yesterday morning I get a call asking if I can come in at 2 PM to see the neurologist they have filling in?  Um, sure.  I guess.  When I met this doctor, come to find out she knew the doctor who performed my craniotomies!  That was kind of a nice thing.  But, she told me some things that were a tad disconcerting:  I did have an abnormal EEG after all (I could never get a straight answer from Dr. D about this), and I must take the Topamax twice a day because I am at risk for seizures because of the scar tissue in my brain.  Once a day (I had taken it just at night) is not enough.

Today:  I have PT in a few hours.  I’m nervous.  I wonder if it’s going to be awkward like it was a few weeks ago.  Let’s hope not.  I hope we can continue to have a good working relationship.

OK dear readers, this was my week.  How was yours?

Rare Disease Day 2015

If you would have told me July 28, 2011 (the day after the first craniotomy) that on this day I would be working out with over 40 people and coordinated a week-long Rare Disease Day event – I would have told you to stuff it.  There’s no way I ever could have imagined today…even on my best day after brain surgery!  This was my first event but I tell ya – I’m hooked!  Look out 2016, hopeforheather is coming for ya!

Together, with the help of the exercise studio I work out at and the support and generosity of friends, neighbors, and family we raised $434 for Rare Disease Awareness! The money will be donated to  Global Genes Project and PTEN Foundation.

There’s so much running around in my mind that I don’t know where to begin to write.  A humble thank you will have to suffice for now.

More Change

When I was diagnosed with brain tumors and knew I was going to have to have brain surgery, my biggest fear was that I would wake up from the surgery different.

For the past 3 years I haven’t really felt much change.  And, thankfully, when I woke up from the surgeries, I wasn’t different.

But lately, something is changing.  And I don’t like it.  It’s scaring the hell out of me.  My balance is getting much worse.  The vertigo episodes are happening more often.  I feel like something is under my feet and I’m going to trip and fall.  These things are happening more and more.

And, there’s no going back to what once was.  Meaning, there is no pill I can take that will make this better.  No procedure that will make the vertigo episodes stop (or at least if there is one, I’m not willing to do it right now).  There is no magic elixir to help all these symptoms go away.  (I’m even frustrated with Yoga because it’s not helping with my balance and I was hoping-beyond-hoping that it would.)  This is what happens when you have 2 brain tumors in your cerebellum.

Did I think I was invincible?  Of course not.

Did I think I had escaped any effects from the brain tumors/surgery?  Kind of.

It’s getting real.  And I’m scared.

But let me say something here:  If you know anyone who has a chronic condition, whether it be cancer or brain tumors or anything else, while you may mean well trying to be a cheerleader, it’s not as simple as “changing your thinking.”  Because BELIEVE ME – if it were, I would have done it 3 years ago.

Please don’t tell me to “change my perspective” if I tell you something about the brain tumors.  Because that tells me you’re not a safe person for me to share my life journey with and you think you can “fix” me or Lhermitte-duclos Disease.  And, while I appreciate you trying to cheer me up, this can’t be fixed.

Sometimes, I just need a friend.  Someone to listen.  Someone to give me a hug and say, “I’m sorry, Heather.  I’m here if you need anything.”  That’s it.  Nothing more.  No pep talk, UNLESS I ASK YOU FOR ONE. 

Thanks.