Thursday, August 18, 2016


Had my EEG at the hospital this morning and had the absolute most wonderful nurse/technician! 
Since I can't drive, I've been out of my migraine onset pills. So I've been smoking as little as possible (it's so hard to find any lately, and my previous herbalist died) and my nurse, Laura and I chatted about my health issues, and I made her laugh a lot. She knew I was headed into a migraine as I arrived, and was empathetic to it since she is a fellow migraine sufferer. She made me laugh a good bit, as she was hooking up all those leads to my scalp and ears. She commented that with all my hair, it's amazing that the scalp leads went on fine, but she was having issues with the ones staying on my ears. I dared her to shave the peach fuzz on my lobes, since it wouldn't grow back horribly thick, and not many people can say they've had their ear lobe shaved. She lost it. 
She said, "You see the optimism in everything, don't you?," and I replied, "There is always a silver lining, if you're willing to look for it." She talked about how it must be tough to go through so much and still be such a delight to be around. I told her that there are days I cannot be around anyone because it would be harmful to their health lol. 
Near the end, I said, "You're my hero today, Laura!," and she replied, "You're my favorite patient EVER, Amanda!" 
I asked her for a hug after the horrible test was over, and she had walked me to my awaiting hubby; to which she happily obliged. 

Wednesday, August 17, 2016

The Scary Two Weeks I've Had...

on Thursday, 8/4/16, I had my very first round of Botox injections for my chronic migraines.
on Tuesday, 8/9/16, I had a seizure-like episode, and am so lucky that my friend was there with me
Per my Neurologist, it isn't urgent but I need to see the PA this week. The schedules didn't mesh until Friday, 8/12/16
before my appt on 8/12/16, while in the lobby at the gift stand, I had another mini episode.
at my appt on 8/12/16, I met my PA for the Neurologist's office. She kept making comments and insinuations that I should've seen the ER dr bc this was/should've been considered urgent. yet all she did was write orders for EEG, bloodwork, and a brain MRI with and without contrast. the front office staff scheduled the EEG at the hospital for 8/18/16, since my husband is off work that day - bc my dr said no driving until she or the other dr release me to drive after all these tests. So either way, I know I'm not driving for at least a week since the EEG was scheduled for the following Thursday, 8/16/16. I had questions for the MRI, so Advanced Radiology scheduled me for the following Friday at 11am, although she was having issues with the insurance company, so she said the appt may need changed or canceled.
Tomorrow is my EEG and I have to make sure I have clean, dry hair with no products or gels. AND NO CAFFEINE for 24 hours prior to the test. They obviously don't know what type of morning monster they'll have on their hands. First step to see if it is seizures I am having, or to see what exactly has been going on.

Inspiration on my Wellness Journey

When a spoonie bestie sends you inspiration right when you need it. 
*name changed to protect a fellow spoonie 

"Hi Baby Girl! I am so sorry to hear you feel so damn crappy. You are so strong and I'm not just saying that because of these migraines. You are so eager to help people, even when you feel the crappiest of crappy. Rose gets the Botox injections. She says they do 36 injections at one time without any lidocaine or other local anesthetic. Did I tell you Rose and I are going to start walking 3 to 4 times a week? Well, bless her heart, we went to the park on Monday and took a little walk. Neither of us move very quickly so we took it slow. It was a beautiful morning and I FINALLY have a friend here! It's been years! Rose has tendinitis in her left ankle and it flared up on Tuesday. Well, as my luck, well I guess our luck, she had to get a cast from just below her knee all the way down to her toes!!! One short walk!!! Go figure! She has to wear it for 2 weeks! We agreed to get back to walking when she gets her cast off. I'm going to ask her to go out to lunch next week. Amanda, she is so sweet, she was feeling so alone. So, I followed in your footsteps. You reached out to me and I finally got the chance to reach out to someone and let them know they are not alone.
I must tell you, I am fearing for your health. I know my job as your friend, is to be positive and reassure you, but I love you and I really am scared of what is happening to you. You, for all intents and purposes, you ARE my best friend. I wish you lived here. I would make you put your Jammie's on, tuck you in (my bed is huge! It sleeps 3 comfortably!). I would make sure you you have plenty of M&Ms and your favorite beverage. I will cook for you and be here for whatever you need. The catch? We will use this time for YOU! I think you need some big time just for you. But you're no where near and I have the peace of mind just knowing you have Sonny and Clay. If you can't answer right now, don't worry. Please keep me updated on what's happening with you. I love you dearly, my sweet and loving sister💜💕"

And yes, this is from one of the spoonie besties I have. 

I am so blessed to have found real friends on this journey.
WYSIWYG - What You See Is What You Get. Unless you have invisible illnesses.