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.

#onward

in bloom


It’s a Nirvana and gardening kind of day

In Bloom
Sell the kids for food
Weather changes moods
Spring is here again
Reproductive glands
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say yeah
We can have some more
Nature is a whore
Bruises on the fruit
Tender age in bloom
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say yeah
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say
He’s the one
Who like all our pretty songs
And he likes to sing along
And he likes to shoot his gun
But he don’t know what it means
Don’t know what it means
And I say yeah
Songwriters: Kurt Cobain
In Bloom lyrics © BMG Rights Management

 

#onward

my story – part 13 (occupational therapy)

…so far I have made fishing, gardening, nails, hair (dying, cutting, styling, braiding), and anything else I can think of into occupational therapy.   Gardening has been amazing.  I am still learning to pace myself, when I feel good I tend to do way too much.  I am finding a happy medium.

oc·cu·pa·tion·al ther·a·py
noun
noun: occupational therapy
  1. a form of therapy for those recuperating from physical or mental illness that encourages rehabilitation through the performance of activities required in daily life. (dictionary.com)

I am trying to save this tree 

Ho Hey, The Lumineers 

I walked to the lake in between appointments and got a phone call that the contrast didn’t show up so I needed the scan again. After they had taken out the IV. Had to come back for 2 more IVs and 2 more CTs. Ain’t life grand 😂😂

I gave myself a #ChicagoCubs Manicure 💅

#gocubs

#onward