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. 

Thursday, March 24, 2016

ISO Barge Fog Horn

My brain fog has been so thick lately. I forget things as soon as I've said them. I need notes for my notes apparently, because I've even begun to forget to take my notebook with me to dr appts (important ones!), and trying to remember all that was said is very exhausting when the fog is there 24/7, and never lets up completely...but is mostly thick enough to cut with a butter knife!

I wish there were a pill for brain fog. Unfortunately, I'm on too many medications and in order to avoid interactions is to keep it the way it is and not add 5 more meds.

How do you deal with Brain/Fibro Fog? Do you have a reminder system in place? and perhaps a backup?
I miss my exits, have to circle the city a couple times bc I'm running errands the very long way, rather than in an order that flows well for locations. I forget things as soon as I open my mouth to speak at times.
And trying to remember something long enough to get out my notepad to write it down? Pfft, forget about that happening 87% of the time!!

Rest well, Spoonies! Happy Spring, and remember to listen to your bodies. It will tell you what it wants/needs....if you only tune in. Gentle Hugs & lots of prayers

Monday, February 8, 2016

What rest? What sleep?

I am so absolutely horrible with my sleep schedule. And as soon as I get it back on track, running like a well timed clock; something happens and the wrench gets thrown into the cogs.
Do you know that feeling? Do you know the guilt over missing fun stuff with friends? Amen; I hear you saying 'yes' out there in the world.
Living a Chronic Life wasn't in my life plan. But I still just keep trusting that God knows my purpose here, and will show me the journey as I travel these crazy & unpredictable paths past these past six years. Then I'll finally know why, or at least what I was to learn from this before my body allows any of the treatments to start working effectively, versus minutely or not at all.

As I sign off for the night, I want you to know that you are not alone at all!! And you are amazing for going through it! Welcome warriors!! #SpooniesRock

Sunday, January 10, 2016

Hope for what?

How many procedures or surgeries have you been through? 
Do you have to keep a list of all of them with you, along with meds list, to every dr appointment?

Then, welcome to my world of have been initiated into the Spoonie club. 

I had a surgery on December 21st, and am still looking at a long recovery because of all my auto-immune issues. Instead of the standard 2-6 weeks, I'm looking at 2+ months of being more exhausted than usual, and having more pain than usual. 

Do you find yourself wishing you knew more people with similar issues? Have you met amazing support online for your issues? I have found some amazing friends online that I talk to all the time, and wish that I could meet & give them the gentle hug they need, from someone who understands. 

So as I sit here with half of my daily water intake waiting to be finished (at 340pm), I just wonder how long it'll be until I get better all-around, not just from the surgery. I want to be able to throw the football around with my son, or even just shoot hoops with him up at the park. And he just happens to like tennis, and I miss playing tennis...this is one of my major goals. Buying us both racquets & a tube of tennis balls, and eventually maybe start playing tennis together. 

Whatever struggle you're going through, know that there is someone out there who feels the same, or similar. 

Wishing you a blessed & pain-free day!! 

Sunday, November 29, 2015

Holiday Hell? Nah, that's normal...

I love the holidays, because to me it means family time. And this year, Thanksgiving fell on one of my sister's birthday. She ended up in Urgent Care with a sprained wrist. My brother-in-law fell down the stairs and is too stubborn for dr visits. Me? Oh I defied my clumsy nature for one day, it seems.
But dealing with post concussion syndrome during the holidays sucks. Ever since my bad fall on Veteran's Day, I've been screwed up in the head (worse than usual). When I hit my head, I injured my inner ears or something like that. Vertigo, faintness, double vision, blurred vision, and the horrid migraines all the time - all come and go, without warning. Well, the migraines have a warning if I hit my head again when I fall, but they still pop up other times.
And that is how I ended up falling four separate times this week. Yesterday's fall forced me to go to the ER because using my cane wasn't working, and I was barely walking well using my mother-in-law's walker. So the ER dr believes I need to go to Johns Hopkins to see a Neurologist; rather than staying on a wait list just to get a call to be scheduled at the local Neurologist's office.

These last six years have been hell. But I'm doing my best to stay positive and hope that eventually the meds & treatments will start helping, and perhaps I'll get off disability and back to working full time. God has given me more strength than I thought I ever had. Going through life til my sickness, having a rough life, prepared me for this. And I have the best husband and son in the world! I thank God every day for bringing them into my life, and my in-laws too! They are such amazing people, and I love them dearly.

Have a good Sunday evening. I'm hoping I'll be able to post a positive update soon for all of my few followers & readers out there