😎 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?

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so damn lucky

I have had a few good doctor visits recently, and am making a ton of progress, so I want to share the good news!

So Damn Lucky – Dave Matthews & Tim Reynolds.
Katie Flo, “Did he (dave matthews) just say we’re so damn lucky? Cause we are, we’re SO damn lucky.”

I had a good follow-up with my Vascular Neurologist/Stroke Team a few months ago at Northwestern. My last scan showed my vertebral artery had healed very well and my symptoms have been pretty minimal. The pain in my neck and shoulder has calmed down a ton, and I haven’t had any “stroke like” symptoms in a while. We are working on getting off ALL medications for pain. I have been off the opioid pain meds for over a year now! I also went off the muscle relaxers a few months ago, and most days am dealing without tylenol or anything other than the natural remedies, cymbalta, and topical pain cream. This alone is HUGE progress.

I also followed up for my yearly vascular scans on my stents and bypass and saw my vascular surgeon. Everything on my scans looked PERFECT as the doctor said. Since everything seems to be working properly and I haven’t been having issues, I will only need these scans every 2 years now, instead of yearly… the less doctors and tests, the better!

Last week I saw my physiatrist at the Ability Lab, and that went pretty fantastic as well. I saw my main doctor from the pain management program and also saw a resident. They were very pleased with the progress I have been making on my overall physical health. I finished physical therapy, and am feeling confident continuing my workouts on my own. My left shoulder and arm are getting stronger and easier to use. My grip strength is getting better, and to sum it all up my quality of life is getting better. It’s hard to explain to most people how much chronic pain can affect everyday life, because most don’t have to deal with it. When your dominant hard/arm is less than fully functional it affects EVERYTHING. I’ve been dealing with this for years, but last year when I had my most recent dissection it got a whole lot worse. These issues come from my neuro vascular issues, as well hypermobility, multiple surgeries, deconditioning, and overall weakness. As the doc said, I have put in the work, and it is really starting to pay off.

I feel like i have most of the answers I have been looking for as far as my health goes, and though there is no cure for chronic pain, or any of the other conditions I have, I am truly learning to manage them. With all of the skills I have learned from my PTs, OTs, doctors and other care providers I am getting back to living my life, and not just being in survival mode.

Here’s to a good summer, and staying strong and healthy.

the ‘so damn lucky’ sign I keep next to my bed, thanks Flo. Me and my friends always remind each other we are so damn lucky.

#onward

(garden and photo by: mom)

Quick health update 😊

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

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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. ⁣⁣⁣

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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. ⁣⁣⁣

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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. ⁣⁣⁣

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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. ⁣⁣⁣

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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. ⁣⁣⁣

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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 😊. ⁣⁣⁣

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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 ⁣⁣⁣

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#onward