A Trip to the Neurologist

image description- Oh I'm fine, just faking a migraine so I can get some botox in my face
[image description- Oh I’m fine, just faking a migraine so I can get some botox in my face]
Today I went to the neurologist for my migraines which have been worsening over the past year and a half.  I’ve been in and out of doctor’s offices for my migraines for over a decade now. I’ve tried over a dozen migraine medications, neurologists, ENTS for vertigo and so on. 

But recently everything has been much worse. I have migraines with aura. That is flashing lights in eyes and increased light sensitivity. But now it’s even worse, I have to close my eyes when lights are turned on and off in a room because lights start flashing in my eyes otherwise. It’s frustrating. And recently, any sudden darkness has caused flashing lights in my eyes, like driving under bridges…which as you can imagine can be dangerous. 

So I finally got in to see a new neurologist. I was anxious to meet him because my primary doctor of 11 years warned me he might scare easily and I can be pretty overwhelming with all my health issues. But he immediately was friendly with me and interested in all of my health issues, not just my migraines and vertigo. 

I can’t even express how important it is for chronically ill people to be able to trust their doctors and for the doctors to be able to look at us as a whole person and not just as the one body part that is their specialty. When I was first diagnosed with interstitial cystitis, my urologist that I was seeing basically looked at me like a giant walking-talking bladder. She never looked at other parts of me and how it impacted my health. I hated that and it made me stop going to see her. 

But looking at a chronically ill person a whole being, in a medical and holistic way, is beautiful in its own way. Most chronically ill people will tell you it’s hard to find a doctor like that…but when you find someone like that, you hold on to them for as long as possible. 

So today, this neurologist, looked at each of my illnesses and medicines and how they impacted my migraines. I was impressed with his thoroughness. He seemed to really want to help me. He didn’t rush through the initial exam. I hate when doctors do that. There’s nothing worse than feeling like a second or third priority to a doctor. 

We made a plan for my migraines…a big plan. A migraine plan. 

  • Get an MRI (I did have an MRI about 10 years ago but it showed nothing)
  • Get an EEG (Which is like an EKG  but for the brain, so it detects electrical activity in the brain)
  • Go to the ophthalmologist to check for papilledema (which is when there is increased pressure in or around the brain which causes part of the optic nerve inside the eye to swell…this can cause visual disturbances and headaches)
  • Wean off of migraine abortive medications (Sumatriptan and Fioricet)
  • Start Botox for migraine prevention. 

This is a big migraine plan, to say the least, there’s a lot that is going to be happening along side of my surgery in July. But sometimes that is just how it goes…when it rains it pours. 

Botox for migraines 

Some people may not be familiar with botox for migraines. Let me assure you, I am not making this up. This is quite a real thing. https://www.botoxchronicmigraine.com/ is a great place to start getting information about it. But I can give some basic information about it here.

Fast facts about Botox

  • Botox was approved by the FDA in 2010 to be used for chronic migraines. 
  • Botox for migraines is for prevention for people who have at least 8-9 migraine days a month. I have migraines daily if you were wondering. 
  • The botox injections are done with a small needle, that feels like a pinprick, that are done all around the front, sides of the head and back of the head. 
  • Injections are given every 12 weeks by a botox specialist, who is a doctor, that is specially trained to give the botox shots. 
  • About half of Botox annual sales are from migraine and other non-cosmetic uses. 

So as you can see Botox for migraines is a big thing in the Migraine Community. It’s something I have read about often since it has been approved by the FDA and I always read stories about how great it works for people with really bad chronic migraines, such as myself. Although I did not always have daily migraines, I do now and have for quite some time. I think it will be an interesting treatment to try out and something different that will, hopefully, break me free from my chronic daily migraines. 

Where do we go from here?

Who the heck knows! I have a lot of stuff to do over the summer related to my health before the Fall semester begins at the end of August. A lot of doctors appointments, tests, and surgery. So I can only just go day by day down this chronic road I’m on and hope that with each step I take things will get better. I have heard a lot of good things about Botox for migraines so I am looking forward to trying something different. 

Having multiple chronic illnesses is difficult and it’s important to have a support system in place. Friends, family, therapists who can support you through times like this…that I am going through now where basically my full-time job is my health. I have a lot of doctors appointments coming up that I don’t feel comfortable driving home from (like the EEG, the Botox injections and obviously my surgery), so, fortunately, my friend Shelby will drive me or my Boyfriend, Aaron. But that’s why it’s important for those of us with chronic illnesses to have support systems in place as such so that we have a friend or family member to turn to when there’s an appointment coming up and we need a ride. 

But overall, my end goal here in relation to this post is to decrease the number of migraines I have monthly. And if that means sticking a bunch of needles in my head every few months… I’m willing to try it. That’s just where I’m at right now in life. Needles in my head sound better than daily migraines. Let’s do this! 

image description-The only time taking a hammer to your own skull seems like an appropriate solution.png
[image description-The only time taking a hammer to your own skull seems like an appropriate solution]

 

 

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Off to see The Wizard

 

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[Image description: a wooded area with a large green sign with silver lettering that says Land of Oz]
I know I didn’t post last week that’s because me and the fam (Aaron, Reid and I) were off to Oz! And by that, I mean the Land of Oz in Beech Mountain North Carolina. This is basically my dream come true. I have been obsessed with all things Oz-related since I was in the womb.

A true Ozian through and through

The Wizard of Oz was the first movie I ever loved and watched on repeat. I have multiple editions of the entire Oz book collection, of which there are 14 original books written by L. Frank Baum, most people don’t realize there are so many. The Wizard of Oz is based on the books The Wonderful Wizard of Oz and (loosely) Land of Oz.

And then there’s the Wicked series, of which I have all the books. And I have seen it twice on Broadway. And I’d love to see it again soon. Plus the Dorothy Must Die series only for those hardcore fans …it’s really intense and sheds a whole different perspective on what might have happened (not for children at all, very gruesome and makes Dorothy and all of Oz turn out to be quite evil…gotta love a nice perspective change though)

My house is covered with Oz paraphernalia. Magnets, signs, clothes, cards, dolls. And now I get to share it with my 7-year-old son, Reid. He is learning to love the magic of Oz too. And it’s nice to have someone to share it with. Afterall, The Wizard of Oz is for young and the young at heart. 

Here we are Halloween 2017. At Reid’s request, the whole family dressed up as The Wizard of Oz. From left to right: Selena (close family friend) as the Wicked Witch, Me as Dorothy, Fidel (Reid’s Step-Father) as Lion, Reid as Tin Man, Aaron as Scarecrow and Rayni (Reid’s Mom) as Glinda the Good Witch of the NorthIMG_0212.jpgIMG_1843.jpg

To Oz?! To Oz! or maybe its North Carolina! Either way…yay! 

We drove the long 8 hours to North Carolina. And I would be remiss if I didn’t talk about my health on my blog about my health while discussing this long journey to Oz. Fortunately, I didn’t have to walk the whole way in heels (which is the movie version of course) like Dorothy did just to get to the Emerald City. But nonetheless, the trip which was from Wednesday night to Saturday night left me in bad shape. Just three days, but those three days were jam-packed with stuff to do and fun-filled stress.

We had a ton of fun, the three of us. We did a lot of stuff. We went to local Deaf schools in North Carolina and Tennessee and had the opportunity to visit with family. But that’s a lot for three days. Especially for a Reid, who is 7 years old and has Autism and ADHD. And for me and my litany of health issues. Between the two of us, we were irritable and cranky….well mostly me. But we still managed to have a great trip. 

The Land of Oz has very limited days that it is open but I highly recommend it. We went and we did request an interpreter and it was, in fact, their first time working with Deaf clients but with guidance from us, they were able to find an interpreter for us which was awesome and quite accommodating. 

A vacay by any other name

Vacations are many things to many people. To some people, a vacation is a time to relax and time to rest. To other people, a vacation is a time to actually go out and do a ton of fun stuff…that makes it feels like you need a vacay from your vacay by the time you get back. Well by the time I got home I had to just lay in bed for days and honestly, I’m still recuperating from it, a week later. By the end of it… my vertigo which is related to my migraines was flaring badly (as well as actual migraines), terrible IC pain, awful PFD flare (pelvic floor dysfunction) and even my throat started hurting dreadfully again (which has generally been under control with antibiotics (until my tonsils are to be removed please see previous posts one this Strep-Gate Part 1 and Strep-Gate Part 2). 

At one point, I made the huge mistake of taking Reid swimming in the hotel pool. Which honestly I have avoided pools for a long time because I have read that the chemicals in pools can irritate and anger IC. But I did it anyway. Oh, the mistake I made. Do you ever do something knowing it will probably hurt your body but do it anyway because you think hey maybe it won’t?!?  

It was after that that my IC and PFD started flaring up something fierce! The PFD made it difficult to pee in the first place. If you’re unsure what I mean…make a fist squeeze it really tight…that’s kind of how it feels when I (and many other people with PFD) have to pee and then slowly release your fist over the course of 15-30 seconds… isn’t that a nice release? But imagine that happening over a longer period of time… like 30 seconds to 2 minutes. And when I finally can pee it bursts out with the white-hot burning razor blades. I hope that really set up an idea in your mind of what an experience is like going to the bathroom for someone with IC and PFD.

It’s cruel and unusual punishment that our bodies inflict on us. We, as humans, take using the bathroom for granted until you can’t anymore. On the days where I have little to no pain when I use the bathroom, I am so grateful and appreciative of each moment of it. And that could sound silly but you just read what I wrote so maybe you understand what I’m saying just a smidgen. Meanwhile…moving forward with the story to more happier things! 

Time for a few pictures!!!!

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[Image description: looking downward you can see the bottom of a blue and white gingham checked dress with white tulle peeking out, Rachel’s feet with tattoos on each wearing ruby red                       slippers (flats not heels) standing on the yellow brick road]                                                    Holy moly ya’ll I’m standing on the yellow brick road! look look!
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[Image Description; Aaron dressed up as Scarecrow standing in front of a fenced in fake cornfield with his arms up and awkward to make it look like he is hung up on a pole]
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[Image description: Reid smiling big and posing as the Tin Man with a hand on his hip and the other hand holding an ax that is placed in a tree stump that is part of the Land of Oz set up.]
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[Image description: Reid dressed as Tin Man walking down the yellow brick road. As the viewer, we only see him from behind as he starts his journey to the Emerald City]
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[Image description: From left to right Rachel dressed up as Dorothy holding the real Dorothy’s Basket and smiling big standing next to Dorothy, both of them are wearing blue and white gingham dresses. Aaron on the other side of Dorothy dressed as the Scarecrow with sunglasses on (unfortunately) and in front is Reid smiling as the Tin Man with his ax and heart] Sunglasses??!?! Come on Scarecrow! Otherwise this is such an awesome pic! Dorothy let me hold her basket!!! #nerdalert
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[Image description: My Two Dorothys! Rachel dressed as Dorothy smiling with Dorothy, also smiling, both wearing blue and white gingham dresses. Both Rachel and Dorothy have similar color auburn red hair.]   Is it just me or do we have like the same color hair? I realize that was not her real hair, it was a wig but just sayin! This is my real hair and omg!
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[image description: Rachel, Aaron, and Reid or Dorothy, Scarecrow and Tin Man Standing in front of the Emerald green gates to Emerald City]   Again with the sunglasses Scarecrow??! This could have been our holiday card… AHHHH
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[Image description: Rachel, Aaron, and Reid also known as Dorothy, Scarecrow and Tin Man pose on a pink platform surrounded by large beautiful flowers in Oz]  Finally Scarecrow without those sunglasses! sheesh. This is a pretty cute picture.  I approve!
There’s no place like home…

On the drive home, we saw two beautiful full double rainbows (pictured below). Through Tennessee, to Virginia, we drove through a big thunderstorm…no tornado… But the aftermath of which left us with those beauteous and magical rainbows that filled my heart with so much joy from an otherwise exhausting and painful trip.

Honestly, I wouldn’t trade that trip for anything…although I would have adjusted it some and added time to rest for myself and make sure to do some more self-care during that time. Everyone needs some self-care, some more than others. For those of us with chronic illnesses, we need to be sure to take extra care of ourselves on trips. And then we when get home allow ourselves time to rest and adjust back to life. 

Arriving home was just what the doctor ordered. I was so happy to just climb in my bed and lay there for days and days with my 4 cats.  A trip to Oz is priceless…to be sure, but knowing in your heart of hearts that there is no place like home…well that’s a lesson, , we all have to learn, like Dorothy did, one way or another. 

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[Image Description: Dense green trees and grass under a blue sky with two full rainbows, one rainbow is slightly fainter than the other, but both are distinctly there] Somewhere over the rainbow…..