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12/31/2019

Vascular Compressions {Part 1}




So I've shared that I have EDS & these other things called May-Thurner Syndrome, Nutcracker Syndrome, MALS, & SMAS that are vascular compressions. As of right now the scientific evidence suggests that people with EDS are more likely to have them (and multiple compressions instead of just one) because of our faulty connective tissue causing weak veins and arteries. Because of my lack of blood flow from these compressions, we believe that is what is also causing my severe POTS. A lot of people that have successful surgeries on their compressions actually see significant improvement of their POTS symptoms. I am a very visual person so when people want to know more about my health issues it's difficult to explain if they aren't very familiar with their anatomy. I hoped making this post would help and break it down, but it also give more information to those that are curious, have similar symptoms, or want to know more for someone else.


Source
Source


Below are the best explanations of the compressions simplified and easy to understand why they can cause such debilitating symptoms and pain.



 

MALS

 

SMAS

 
Nutcracker & May-Thurner Syndrome


Stay tuned for Parts 2 & 3 for treatment & diagnosis. Are there any questions or something you would like more clarification on? Of if you have more to add or explain from your understanding or experience. Please feel free to comment and share below.


12/30/2019

God's Not Done With Me



Today I got the devastating news that my vascular surgeon in Ohio has decided to retire. It is understandable, he is 75 years old and wanted to retire months ago, but the influx of patients coming to him for help made him try to continue. This is a very hard pill to swallow for our vascular compression community. He was the leading doctor who understood these rare issues and his 35 years experience helped him to see things on a CT scan no others could. He's saved so many lives and there was no other doctor I trusted to do my open surgery.


I feel like I'm standing in my ruins. I feel like I keep losing every time there seems to be a way out and solution for my health problems and pain. All I currently see are ashes and I definitely have a shattered heart right now. I do know God's not done with me even though I am lost, this is so hard, and I'm falling apart.


When I try to figure out why I could possibly have yet another disappointment, I realize during those times I'm feeling overwhelmingly discouraged, it's when I'm motivated to write these posts and share. It really happens like that, every time. Writing about what I'm going through somehow gives me back my confidence and restores my faith.


Hebrews 35-36: "So do not throw away your confidence; it will be richly rewarded. You need to persevere so that when you have done the will of God, you will receive what he has promised."


My husband made sure that I know we will do whatever it takes to get answers and relief, if it's flying across the country to see multiple specialists or paying $400 to send our scans to a German doctor to look over. I ask my prayer warriors to pray for a new path and direction that's God's plan because I do know this can't be the end of my story. So if anyone else has just experienced a broken heart right now, He's not done with you yet.


"Standing in your ruins, feels a lot like the end
So used to losing, you're afraid to try again
Right now all you see are ashes
Where there was a flame
The truth is that you're not forgotten
'Cause Grace knows your name
God's not done with you
Even with your broken heart and your wounds and your scars
God's not done with you
Even when you're lost and it's hard and you're falling apart
God's not done with you
It's not over, it's only begun
So don't hide, don't run
'Cause God's not done with
You-ou-ou-ou-ou
You-ou-ou-ou-ou
There's a light you don't notice
Until you're standing in the dark
And there's a strength that's growing
Inside your shattered heart
Woah-o-o-o-o-oah
God's not done with you
Even with your broken heart and your wounds and your scars
God's not done with you
Even when you're lost and it's hard and you're falling apart
God's not done with you
It's not over, it's only begun
So don't hide, don't run
'Cause God's not done with
You-ou-ou-ou-ou
You-ou-ou-ou-ou
He's not done with you
You-ou-ou-ou-ou
You-ou-ou-ou-ou
He's got a plan, this is part of it

He's gonna finish what He started

He's got a plan, this is part of it

He's gonna finish what He started

He's not done

God's not done writing your story

No, He's not done

God's not done with you!
God's not done with you

God's not done with you
Even when you're lost and it's hard and you're falling apart
God's not done with you
It's not over, it's only begun
So don't hide, don't run
'Cause God's not done with
You, You (You-ou-ou-ou-ou)
You, You (You-ou-ou-ou-ou)
You, You
No, He's not done
God's not done with you"

12/14/2019

The Wait of My Life


Today has been hard.  I found out another person committed suicide from my vascular compression Facebook group, which makes 4 this week and she was just about to have surgery. So many emotions on top of having another flare up start yesterday when I actually had a week free of abdominal pain like pre ER visit. I've been in the wait of my life right now. Waiting to finally hear from the vascular surgeon to diagnose the MALS and SMAS and tell me if he can fix it and what we will do for surgery.


Some of the last posts one of my fellow warriors posted was spreading awareness about our rare illnesses. The last things she wanted to do was help others not experience what she was. What is so difficult is that every time this happens to this Facebook group, the loss of one of us, our hearts break because it could be us. The pain is so real and you understand completely how it just gets too much. Or that it was found too late, too much damage was done that their bodies couldn't take it anymore, or the surgery was too risky and the risk was greater, or the unforeseen complications won the fight of the toughest fighters that have ever lived.


I have been writing a book, which is the purpose God has put on my heart to fulfill by going through many experiences in my life teaching me about waiting. I knew this wait would far exceed the others, but also reap what I've sowed in each chapter I write about to land me here, telling everyone, no shouting to everyone what I proclaim - to have hope in the wait. It's easy to talk or write about staying positive when life is good and you aren't experiencing difficulties. Well, I'm here experiencing the most difficult thing in my life and I am praising God. I'm finding things to be thankful for. And I'm having hope in the wait. Because my story is His story.


I had made some way with a book title, outline, first chapter, and then I let the excuses get in the way. I don't want to sacrifice time away from the kids, oh I still need more answers before I can write more, I'm just waiting for the energy or motivation to strike. I keep forgetting that it's not me writing this book and that every time I sit down to start, the words start flowing and they aren't my words. Things coming together, thoughts perfectly leaving my brain and explaining exactly what I mean and what I want to convey, this is a big deal since brain fog is a huge symptom of all my issues and stringing together a sentence to someone is usually a struggle.


Life is hard, ya'll. God didn't promise it wouldn't be though. What He did promise is that He would be with me every step of the way, and I'm here to tell you He has been, ever since I let Him. Ever since I let Him take control, and God knows I really really liked to be in control and still do, but I've learned it's not going to work unless I give it to God. That makes paying attention to all the things I wouldn't have expected while I was in control to be that much more extraordinary. The little exclamation points He puts on blessings and gifts so you know they are from Him. If you read, or have read my book than you will understand the ones I mention.


Another point I would like to point out is that we go through things to help share with other people. It is easy to want to be ashamed or keep those things hidden, especially if you are an introvert/perfectionist like me where exposing "my stuff" is not something I would prefer to do. God is leading me to share this and I'm going to trust that it's to help someone else just like other people have helped me.