😎 shades for migraine 😎

Today, June 21st is migraine solidarity day 😎 we wear our shades for migraine today for awareness.

Migraines affect 1 billion people worldwide, and unfortunately I am one of them. They are so much more than ‘just a headache’ and can be hard for people who don’t get them to understand. I have been going through a good period of migraine pain the last few months, but ever since my accident, and subsequent vascular surgeries I have had them. Along with the pain I usually get an aura in the days leading up to it, which can be pretty frightening. I see zig zags lights moving around on my right side of vision. I can’t see straight, my balance is off, it can be pretty scary. Then comes the headache, vomiting, nausea, sound and light sensitivity. I take a medication that helps prevent them that I will probably take for the rest of my life, and that comes with side effects too. I am down from spending up to half the month suffering these headaches to maybe 1 per month. Keeping my fingers crossed that it stays that way!! Migraines are NO joke! Any favorite remedies from my fellow migraine warriors?


Quick health update 😊

I’m starting to feel better… like myself again. ⁣⁣⁣


I’m so scared to say this because it seems like anytime I do, something catastrophic happens, but I’m willing to risk my superstitions because I’m feeling BETTER than I have in years. ⁣⁣⁣


That’s not to say I’m cured or actually ‘better’, I will probably struggle with things for the rest of my life, but I’m learning new ways of doing things, accepting the things that are impossible, and pushing myself harder than I ever have before. ⁣⁣⁣


I’m almost done with round 2 of physical therapy at @abilitylab and I’m seeing HUGE improvements. I’m still using 1 lb weights, so don’t expect to see me becoming a weight lifter 😂 but it’s helping with functioning enormously. ⁣⁣⁣


I was completely discharged from my GI doctor. For the time being there are no issues, and hopefully the Botox I had injected in my esophagus will last a year or longer. ⁣⁣⁣


I have more follow up next month, CT scans to check on my stents, but that is something I do yearly and will do for the rest of my life. ⁣⁣⁣


I’m also down to only seeing my vascular neurologist/ stroke team every six months, and haven’t had any “stroke like” symptoms in a while. The artery is healing very nicely 😊. ⁣⁣⁣


All in all it’s been a few good weeks of appointments and I am looking forward to a summer filled with many less doctor visits ⁣⁣⁣



Bullet With Butterfly Wings

…maybe not butterfly wings, but I sure have some winged scapulas!

Bullet With Butterfly Wings – The Smashing Pumpkins 1995

My scapulas have been something I have been working on in physical therapy, and my PT examined them a bit today at my session, and I could tell they were not working “properly” I didn’t realize how much they winged out until I snapped a few pictures of them!

This is happening for a number of reasons; physical trauma, nerve damage, thoracic outlet syndrome, torn arteries, subclavian steal syndrome, what I suspect to be damage from surgery in 2017, and a connective tissue disorder that I was born with… the list keeps growing.

There is a reason I drive/commute over an hour each way to physical therapy at the Ability Lab in downtown Chicago, and that is because they are THE BEST. I don’t just mean my experience, they are the #1 physical medicine and rehabilitation hospital in the country. My PT checks how I am moving with every exercise and modifies what needs to be changed to suit me. My neck exercises are still pretty hard, so we moved those down a notch, and are stepping up the lower scapula ones a little more. When you have an overall dysfunctional body it’s hard to figure out what to focus on yourself, that’s why I have the professionals helping me.

I am trying to really push myself, and can already see some improvement in my functional abilities. Less weakness in my arm and hand, more strength in my shoulder, and less popping of joints. I am sore all the time, and triggered a migraine last week, but I know it will be worth it in the long run.

Since I had the botox on my esophagus last month, I have noticed a huge difference in my ability to eat as well. I still don’t have much of an appetite and have to remind myself that I HAVE to eat, but it is getting better. My esophagus was spontaneously spasming before, and it could get scary. Often times when this would happen I would feel like I was choking, and couldn’t quite catch my breath afterward. It has only happened once since the botox, and honestly it was because I was eating WAY too fast. I haven’t gained any weight back, but I have stopped losing weight, and I am at a healthy weight for my body, so the doctors and I are not worried about it anymore; as long as I am getting enough food/nutrition. In April I will follow-up with the GI at Northwestern about that procedure, I’ll also follow up with my vascular neurologist and get repeat scans of my blood vessels/stents to make sure all is good in my vascular health.

All in all, making good progress and seeing some good results. I don’t know that I’ll ever get to 100% again, but I’m having more good days than bad ones, so I am a pretty satisfied patient for once!

#onward !!