maintain the pain


Yesterday I went back to the AbilityLab for a re-check. I’ve been really nervous for the tests, mostly because it’s hard to tell if you are getting better or worse when you are always in pain no matter what.

I saw improvements with everything!

One of the things I struggle with a lot is strength in my arms. My arms both get pretty weak at times, but my left is bad. Since I left the pain management program I have gone up 7 lbs of grip strength in each arm!

I went in with the mindset that even if I did get weaker, I feel better overall so it would be ok. I didn’t want to get upset if I got weaker, because it’s really hard to tell sometimes. I’m more careful with my arm than I used to be, I avoid certain activities with my left arm, but I am using it more overall in everyday functional things, which is a big improvement.

The gardening for occupational therapy has been great. It gets me outdoors, gets my whole body moving (gently) and I get to see pretty stuff like flowers and birds.

They measure a lot of our progress in how we feel we are doing. Every time I go there I fill out a few pieces of paper answering questions about my functioning, pain, attitude about the pain, sleep, everything.

Everything is better than it was 2 months ago.

Pain level is steady, but getting more manageable. Sticking to my workouts helps a lot. I have a few I do everyday and a few I do a few times a week. I modify what I need to. Playing in the mud instead of using puddy for example. It’s more fun to me anyways.

I got a few new modifications to add. A few of my shoulder movements still trigger really bad pain, so I’m moving those to the floor for stability. My scapulas are ‘winged’ which is not good, but hopefully will continue to get better over time.

I saw 3 different therapists, physical therapy, occupational therapy, and the pain psychologist. As usual they were all awesome. I’m so glad I found this place ❤️



Maintain the Pain – Miranda Lambert 2009

I put a bullet in my radio
Something just hit me funny I don’t know
Just pulled the trigger going down the road
You slammed the door and knocked me off the wire
Been walking lines and you’ve been burning tires
Slow and uneasy ain’t that what you like
It’s insane
It’s in vain
You stay to maintain the pain
I hear your name and man it burns a hole
I swear I hate you but I can’t let go
The kind of damage that you can’t console
It’s all in vain
It’s all insane
I swear you’ll stay
I swear you’ll stay to maintain the pain
It’s all in vain (I hear your name and man it burns a hole)
It’s all insane (I swear I hate you but I can’t let go)
I swear you’ll stay (The kind of damage that you can’t console)
I swear you’ll stay to maintain the pain
Maintain the pain
Songwriters: Miranda Lambert
Maintain the Pain lyrics © Sony/ATV Music Publishing LLC

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.