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 !!


for good

While I can’t say I have been doing great, I have gotten some good news about my health that i want to share. I’ve also gotten some bad news, so I’ll share it all.

I saw my Neurologist a few weeks ago at Northwestern. He specializes in stroke and neurocritical care. He is a really great doctor and has agreed to take over my care for my vascular and neurological problems. This eases a lot of my stress, because for me, the less doctors involved, the better. He does want to do some more testing in the future. He thinks there could be a genetic factor going on that keeps causing all of my injuries. If I do have a genetic condition there is nothing more they can really do, as there wouldn’t be a cure, but we might be able to look at treatment options and preventative care from a different angle.

I saw a Cardiologist at Northwestern a few months ago also. I was diagnosed with tachycardia, a PFO (small hole in the heart) and a heart murmur. After wearing a monitor for a few days the doctor told me I am in no danger for my heart, and that I will just stay on my beta blocker to control my heart rate/ help with my migraines. My blood pressure is back to normal also!!!!

My pain is better.

It’s not good in any way, but it’s better.

When I started the pain management program, I was at a constant 8/10. My new constant is a 6/10. I still have days where I am at 9/10 and don’t leave my bed, but the days I am lower, I am able to do more.

I went for my follow-up at the AbilityLab (the pain program) and it didn’t go well. Not because my doctors are not amazing, but I was a big mess that day, and could barely talk through the tears.

I was 3 weeks late for my 4 week follow-up appointment, and I wasn’t even able to see all of my health care providers. I could barely move my arm that day, so doing my testing to see where I am at with strength didn’t seem like a great idea.

I’m not sure if I’m getting better or worse at this point. I didn’t really want to know that day. I go back in two weeks to check my actual progress. I saw my doc and psychologist and they helped get me back where I need to be. Staying positive. Keeping an open mind. Knowing it’s ok if I am getting worse, because my quality of life is getting better.

When I say getting worse, I mean my mobility and strength.

Those are my biggest issues right now.

With all the surgeries I have had, and all the stents and bypasses near my neck, and that darn ATV landing on my chest, there is a lot of damage that can’t be undone.

I still can’t sit comfortably for more than five minutes. I can’t stand for more than a few minutes.  I barely use my computer because I can’t type most days (yay iPhone) , my thumbs are way better than my actual arms/hands. Some days I can barely talk.

My muscles are a mess, my bones are a mess, my vascular system is rebuilt, but I don’t look sick.

That’s the issue.

Most people cannot understand what they cannot see. The comments I get from family and friends sometimes are downright offensive.

If you wouldn’t say it to someone with a mobility aid (wheelchair, walker, etc.) please do not say it to me.

I don’t use a mobility aid because I am lucky enough right now not to need one. I might in the future though.

I walk as much as I can. I workout at much as I can. I’ve lost over 60 lbs in the last year. I have not been trying for the last 40 though. That’s scary. I have been force feeding myself and I gained 4lbs this week. When my pain gets so bad I can’t think, I also can’t eat. I will just throw up so I don’t try anymore. On my ‘good’ days, I still have no appetite, but I make myself eat. Soup, bread, fruit and vegetables have been my main foods. I have trouble chewing when my pain is bad too, so it’s just a lot of factors.

I’m getting there… it’s just a long journey to healing, and to accepting the things that will not heal.