Hey everyone!

Why does the word “everyone” look weird to me?  Like I spelled it wrong?

Anyway.  I just wanted to check in with you.  I know I’ve been a bit sporadic with posting.  Some days, my life is pretty basic and boring:  I go to the gym and read (true story).  Other days I am overwrought with medical appointments, scans, almost daily migraines, problems with my esophagus, etc. and I feel like a weirdo (also, true story).  I try to stay busy and distract myself with things that are beneficial for my mental health:  I love listening to podcasts (do you recommend any? I just finished this one and HOLY COW! I could write more on that soon); volunteering; reading (obvi); editing photos on Hipstamatic.

Of course, I didn’t ask for this life of brain tumors and hereditary cancer syndromes.  Nevertheless, it’s mine.  My point of writing is that this week I finally have my disability hearing before a judge.  To say I’m terrified would be an understatement, you know?  I have this weird feeling in my chest:  Anxiety, obvi.  But, I can still vividly see and feel and hear my diagnosis of July 18, 2011 as if it were yesterday.  Literally.  And, it’s like my entire life since that day is rolled up into a big ball and this week it’ll come to a head.  Like, what is the purpose of my life since then?  It’s been 6 1/2 years (just 3 1/2 years for the disability process alone) and have I been wrong all along?  What will this judge think?  Is there enough “medical evidence” to prove to the judge that I am different now and can no longer work?

I pray that there is.

I’ll be in touch soon.  If you have any extra prayers, please send them my way, and to the judge too.  ❤  Thank you.

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!

 

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?

Update from one doctor

I went to the oncologist yesterday and the neurologist today.  I’ll update about the neurologist first.  I really like him a lot-he’s very funny.  Nice doctors really make a world of difference and I’m very lucky on that account.  I’ve had grumpy doctors in the past and I’ve always wanted to ask them, “So – tell me.  Why did you go to medical school anyway?  You kind of suck at being kind and empathetic to someone who is scared out of their mind.”  But, again I am lucky that my doctors are very nice and personable.

Dr. N (I’ll call him that here for writing sake) wants me to stay on this current dose of both meds for at least 6 months to a year.  Yikes.  Here I was with my list of questions for him wondering when I could starting weaning off my dose.  I guess that is out of the question for now.  OK.  So, I then had to contact the hospital because I’m having a bit of trouble financially each month paying for them so there is some assistance program that I can apply for.  Hopefully that will work out and take the edge out until I can go back to work.  I’m so thankful to have had no migraines since being on this dose of meds.

I asked him about my speech as sometimes I *feel* (maybe I do, maybe I don’t) that I have trouble getting the thoughts from my brain to come out of my mouth correctly.  He said that could be from the meds or the surgery.  He also said I need to give myself at least a good 6 months from the surgery too to have things calm down.  Good thought as I never really thought about it like that.  I’m feeling good – moving my head from side to side and back and forth but I forget sometimes to do that. I need to do that more and more.

The oncologist appointment and update will have to be in another post.