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

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9 years with my ‘magic’ metal heart – and the 9 most important things I have learned along the way

9 years. It’s crazy how much can change in 9 years. On April 10, 2010 my whole life changed. The one question I was asked that day that keeps coming back to me lately was, “are you an organ donor?” Getting prepped for emergency vascular surgery to repair my dissected aorta, with a chest tube in, and 7 broken bones that is the question that made it all real. Wow, I might not survive this surgery or this day. I was whisked away in a helicopter from the accident, so I didn’t have an ID or phone or anything to tell them if I was, I was an organ donor, but never thought I’d be asked that question in the trauma unit at the Med in Memphis, Tennessee. A lot has happened since that day, and here are some of the most important lessons I’ve learned dealing with this body of mine over the past 9 years:  (you can read more about me and my health here).

1. Life doesn’t always look the way you thought it would… and that’s okay. You can still find ways to enjoy it. No matter what gets thrown at you.

2. Life is hard. For all of us. We all go through highs and lows, and when we’re in a low the most important thing to remember is that this too shall pass, and that better days will come. I promise. It took a lot of waiting, but I feel like I am almost through the lowest of lows, and it makes you appreciate the highs so much more.

3. You need to advocate for yourself. If you don’t think your doctor is taking your case seriously, or not listening to you, find a new one. I used to cry at most of my doctor appointments, I found some of the best doctors in the country by standing up for myself, and waiting for 7+ hours in the ER waiting room twice in severe pain. Worth it 100%.

4. It’s okay to not be okay. I’ve had periods over the last 9 years when I’ve had to admit I was not okay, and asked for help. I might need to do it again in the future, and that’s ok. I’ve gotten help from psychologists, counselors, psychiatrists, medications, therapy, and I’m not ashamed of that. I hope you never feel embarrassed to ask for help, because I assure you it’s ok, and will make you stronger in the end. Going through everything I’ve been through has been tough, but I’m determined to be tougher.

5. Other people may have been through worse, but that doesn’t make your situation any less valid. I know a lot of people who are afraid to tell me their issues because they think I’ve had it worse. It’s not a competition. We’ve all been through something, and if you ever need someone to listen, I’m pretty good at that. I might not completely understand what you are going through, but I have had my fair share of struggles and a little empathy can go a long way.

6. Make time to do the things you enjoy 😊. Depending on abilities this might look different for everyone, but it is so important. Spend time with the people that mean the world to you. Go dancing. Watch your favorite movie. Watch the birds build their nests (my recent new hobby 😂🐦). Go see the band you love. Whatever it is, it makes a difference in overall happiness and well being.

7. With that being said, your mental health is just as important as your physical health. Take care of both.

8. You don’t always have to be right. We can all learn a lot from each other, and sometimes that is admitting that you are wrong and learning from your experiences.

9. You can make plans as much as you want, sometimes things don’t go according to plan and that is ok 👌. Set new goals, make new plans, and do something everyday to get there.

#onward !!!!

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 !!