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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.


11/23/2019

Road Trip Playlist [2]

You can find the first playlist post here. This is the list of songs that got me through the past month. So many I would just put on repeat when I faced some kind of discouragement and needed God's reminders.



I have no words to say
Don’t know what I should pray
God, I need You
God, I need You
Oh Lord, my faith is tired
And tears fill up my eyes
But I will trust You, I will trust You

Whatever comes my way
You have taught me to say

Amen, let Your kingdom come
Amen, let Your will be done
And through the rise and fall
You’re God above it all
Amen, we’re singing Amen

When I can barely stand
You strengthen me again
I will seek You, I will seek You
Though troubles may arise
My hands reach to the skies
I will praise You, I will praise You

Whatever comes my way
You have taught me to say

Amen, let Your kingdom come
Amen, let Your will be done
And through the rise and fall
You’re God above it all
Amen, we’re singing Amen
We’re singing Amen



The pathway is broken and the signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley if You want me to

'Cause I'm not who I was when I took my first step
And I'm clinging to the promise You're not through with me yet
So if all of these trials bring me closer to You
Then I will go through the fire if You want me to

It may not be the way I would have chosen
When You lead me through a world that's not my home
But You never said it would be easy
You only said I'd never go alone

So when the whole world turns against me and I'm all by myself
And I can't hear You answer my cries for help
I'll remember the suffering Your love put You through
And I will go through the darkness if You want me to



I won't just survive
Oh, you will see me thrive
Can't write my story
I'm beyond the archetype
I won't just conform
No matter how you shake my core
'Cause my roots, they run deep, oh
Oh, ye of so little faith
Don't doubt it, don't doubt it
Victory is in my veins
I know it, I know it
And I will not negotiate
I'll fight it, I'll fight it
I will transform

When, when the fire's at my feet again
And the vultures all start circling
They're whispering, you're out of time
But still, I rise
This is no mistake, no accident
When you think the final nail is in, think again
Don't be surprised, I will still rise

I must stay conscious
Through the madness and chaos
So I call on my angels
They say

Oh, ye of so little faith
Don't doubt it, don't doubt it
Victory is in your veins
You know it, you know it
And you will not negotiate
Just fight it, just fight it
And be transformed

'Cause when, when the fire's at my feet again
And the vultures all start circling
They're whispering, you're out of time
But still, I rise
This is no mistake, no accident
When you think the final nail is in, think again
Don't be surprised, I will still rise



Find rest my soul
Put your hope in God
Put your hope, put your hope in God



When I thought I lost me
You knew where I left me
You reintroduced me to Your love
You picked up all my pieces
Put me back together
You are the defender of my heart
When I thought I lost me
You knew where I left me
You reintroduced me to Your love
You picked up all my pieces
Put me back together
You are the defender of my heart
When I thought I lost me
You knew where I left me
You reintroduced me to Your love
You picked up all my pieces
Put me back together
You are the defender of my heart



What will it be like when my pain is gone
And all the worries of this world just fade away?
What will it be like when You call my name
And that moment when I see You face to face?
I'm waiting my whole life to hear You say

Well done, well done
My good and faithful one
Welcome to the place where you belong
Well done, well done
My beloved child

You have run the race and now you're home
Welcome to the place where you belong
What will it be like when tears are washed away
And every broken thing will finally be made whole?
What will it be like when I come into Your glory
Standing in the presence of a love so beautiful?
I'm waiting my whole life for that day
I will live my life to hear You say

Well done, well done
My good and faithful one
Welcome to the place where you belong
Well done, well done
My beloved child



I can't say that everything's okay
'Cause I can see the tears you're crying
And I can't promise to take the pain away
But you can know I won't stop trying

I'll be the angel by your side
I will get you through the night
I'll be the strength you can't provide on your own
'Cause when you're down and out of time
And you think you've lost the fight

Let me be the angel
The angel by your side
I know it feels like you're running out of faith
'Cause it's so hard to keep believing
But if I can bring a smile back to your face
If for a moment, you'll forget all about it

I'll be the angel by your side
I will get you through the night
I'll be the strength you can't provide on your own
'Cause when you're down and out of time
And you think you've lost the fight

Let me be the angel
The angel by your side
'Cause this won't be the last time
You'll need a little hope
But I want to be the first to let you know



When life has cut too deep and left you hurting
The future you had hoped for is now burning
And the dreams you held so tight lost their meaning
And you don't if you'll ever find the healing

You're gonna make it
You're gonna make it
And the night can only last for so long

Whatever you're facing
If your heart is breaking
There's a promise for the ones who just hold on
Lift up your eyes and see
And the sun is rising

And the sun is rising
Sun is rising
And the sun is rising

Every high and every low you're gonna go through
You don't have to be afraid I am with you (I am with you)
In the moments you're so weak you feel like stopping
Let the hope you have light the road you're walking

You're gonna make it
You're gonna make it
The night can only last for so long

Whatever you're facing
If your heart is breaking
There's a promise for the ones who just hold on
Lift up your eyes and see
The sun is rising

And even when you can't imagine how
How you're ever gonna find your way out
Even when you're drabbling in your doubt
Just look beyond the clouds



And every step every breath you are there
Every tear every cry every prayer
In my hurt at my worst
When my world falls down
Not for a moment will You forsake me
Even in the dark
Even when it's hard
You will never leave me
After all

After all You are constant
After all You are only good
After all You are sovereign
Not for a moment will You forsake me



Staring down the face of fear
Gotta keep breathing
When the negative is all you hear
Gotta keep believing

'Cause in the dark there is a light
Your truth it keeps on burning bright
Brave enough to fight the fight
And shout the battle cry

You'll never stop me I'm a warrior
When I fall down I get stronger
Faith is my shield, His love is the armor

I'm a warrior (I'm a warrior)
I'm a warrior (I'm a warrior)
I'm a warrior (I'm a warrior)

Every scar on my skin
Is a beautiful reminder
Of a moment when I didn't give in
And I walked through fire

'Cause in the dark there is a light
Your truth it keeps on burning bright
Makes me brave to fight the fight
And shout the battle cry

You'll never stop me I'm a warrior
When I fall down I get stronger
Faith is my shield, His love is the armor

I will keep the hope alive
I will find the strength inside
I will keep the hope alive
I am a warrior, I will survive
I will keep the hope alive
I will find the strength inside
I will keep the hope alive
Warrior
You'll never stop me, I'm a warrior
When I fall down I get stronger






Any of these that's your favorite or a certain lyric speaking to you lately?

11/22/2019

Breakthrough

 


Three weeks ago I came across this song. I knew it was God speaking to me that something big was about to happen and to continue to stay strong. Yes, the reality is I am still in pain, BUT there's been a huge breakthrough in a lot of my other health issues and a breakthrough in getting answers why I have such severe debilitating pain. There's still a lot more to be done and figured out, but we've come so far since my first diagnosis of EDS in April and the start of all the vascular testing in July.

  • My MCAS (Mast Cell Activation Syndrome) has drastically improved thanks to my amazing allergist trying to a combination of medicines that has decreased my rashes and reactions.
  • My cardiologist decided to have me try a medicine that is a patch and it has also drastically improved my POTS (Postural Orthostatic Tachycardia Syndrome) symptoms so my chest pain has been non existent and I haven't been as dizzy so I can stand for longer periods. It's an even bigger deal because I normally don't tolerate any medicines because of my MCAS. 
  • I got approved to take part in the first exercise hypermobility EDS research study through a university with an 8 week Pilates course. I'm so excited to finally help in that way to hopefully lead to useful data and feedback.
  • I now have a local doctor who is supportive and my advocate thanks to my other Dallas doctors.
  • I'm glad I decided to have an eye and dental appointment because I was having some issues and we know now they are caused by EDS and we will need to continue to be watching them.
  • Most of my appointments are complete for now (besides PT) so I'm just waiting for last EMG test on my arms to check for neuropathy and then I will be able to send in all my very thorough paperwork to my geneticist. The geneticist will write up a detailed report explaining with research how EDS has caused all my issues and if my insurance covers it, he will send a genetic testing kit.
  • The previous post I explained about finally having proof of my Nutcracker and May-Thurner Syndrome thanks to the CT angiogram. I found out I was able to drop off my 5 previous scans to that radiologist so he can look over them and compare to the one he just did. Hopefully will find out any edits made to the report next week. 
  • Everyone always asks what's next, now that we know, can we fix it? That is going to take some explaining that I've saved for the another post 🙂


I love looking back at old blog posts like this one and seeing the journey where I had so much opposition, but because of God and my faith, I was able to see through all of it and know that He is faithful and that a breakthrough was coming.



"Hey there fear
I've seen you here before 
You keeping coming back
And knocking at my door
For so long, so long
I've been trying to soar
With my hands tied up and my feet held to the floor
But I'm feeling' like a breakthrough is coming
I can see that a breakthrough is coming, coming for me
Cuz my heart, it was made to fly
Destiny can't be denied
I'm tired of waiting
I am overdue for a breakthrough"

Health Update 11/22/2019




Oh, hey there November. I'm currently laying in bed trying to distract myself while in a "flare up" as we are calling them just like when I went to the ER. Unfortunately this is #4 since September and no one has figured out what they are or how to prevent them. Earlier we had to decline plans with friends again for dinner and playdate for the girls, which is hard when it seems like an often occurrence the past year to have to request a rain check on any social outings.


I haven't really mentioned on the blog yet about a women's retreat I went to with my sister in April before my first rheumatologist appointment. On the last night of the retreat I will never forgot one of our group leaders telling me she had a prophecy for me.
"Hope deferred makes the heart sick, but a longing fulfilled is a tree of life" 
Proverbs 13:12 the verse above she gave me and explained even with a specific diagnosis, that I would still believe in God's healing. Today I actually had the realization, that oh, that prophecy was even more correct than I could ever imagine. Shortly after the retreat I would get my EDS diagnosis, a chronic illness that isn't one you can just take medicine for or has a cure. It's even more ironic that the song I've been listening to lately is "Even If" and I had never heard the testimony behind it until I finished writing this post and was looking for something to connect it all. What I wrote before listening to it just now was "My hope no longer was in healing because I know He can if that's His will, but I actually was given a fulfillment of my longing to have hope in Jesus. Through that he gave me a purpose to give others hope in the wait." 


When I last posted I had told everyone I was waiting for my venogram, had gone to the ER because I had new symptoms and unbearable abdominal pain, and just saw my mom's doctor who was willing to help me with pain relief until I had the procedure and more answers.

 
The venogram showed May-Thurner Syndrome with a 90% compressed left iliac vein and one large collateral vein. The interventional radiologist did not find any Pelvic Congestion Syndrome or Nutcracker Syndrome, which was a little confusing because my previous doppler ultrasound showed a different story. I actually had to be put out for the venogram (and the recovery was quite difficult), but after I was awake, the doctor told me what he found and said we would do a phone appointment in 2 weeks to decide what to do next and if I would want to do a stent of the iliac vein. Let's just say we still have not had that discussion yet.


My cardiologist wanted to see me immediately after he learned I had an ER visit. Thankfully he finally ordered a CT angiogram (what a vascular surgeon will need) that he expected my interventional radiologist to do along with the venogram. I just got the CT angiogram report last Friday at my follow up and it showed both left iliac vein and right iliac artery compressions along with a greater than 50% compressed left renal vein. I've known my recent "flare ups" have had to do with these because of limited blood flow to the organs. It makes me feel just a little bit better when I read and hear one of the leading vascular/transplant doctors in the country say that Nutcracker Syndrome or Loin Pain Haematuria Syndrome (LPHS) is “possibly the worst pain known in medicine.” 


I will go into more detail on how God was working through all of this in a future post, and it was so validating to finally have more pieces to the puzzle of what's wrong, but there still were a couple compressions not found in the CT angiogram that will take more opinions and therefore a longer wait.


"They say sometimes you win some
Sometimes you lose some
And right now, right now I'm losing bad
I've stood on this stage night after night
Reminding the broken it'll be alright
But right now, oh right now I just can't

It's easy to sing
When there's nothing to bring me down
But what will I say
When I'm held to the flame
Like I am right now

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone

They say it only takes a little faith
To move a mountain
Good thing
A little faith is all I have right now
But God, when You choose
To leave mountains unmovable
Give me the strength to be able to sing
It is well with my soul

I know You're able and I know You can
Save through the fire with Your mighty hand
But even if You don't
My hope is You alone
I know the sorrow, and I know the hurt
Would all go away if You'd just say the word
But even if You don't
My hope is You alone"


9/25/2019

Sometimes You Need a Good Laugh, Even if it's at Yourself

I used to do a post series on my travel blog of my many embarrassing moments. I couldn't help sharing this recent one since I usually have quite serious posts on here.


Well here's a good laugh for everyone at my expense. So I needed to drop off my 24 urine sample at the lab at the hospital. Unfortunately I couldn't get much pee in that 24 hours (I mean part of the problem because I can't drink a whole lot without pain). Anyway, I park, and the container is in a bag they gave me with handles so I use my cane to walk to the lab holding onto the bag. I get to the desk and look down to realize the bag is wet AND there's not only urine all over the outside of the container, but has saturated the lab note needed to send my info out for the doctor to get tested. Weirdly enough, the lid is still tightly secured, fortunately it wasn't a whole lot (not that I had much to begin with). Can you just imagine though as I realize this, I now need to explain it to the poor lab tech? She gets gloves, makes a comment  about how little is in the tub (again I explain it's the reason why we are testing) and I give her the disgusting pee form. She tells me they are going to hang it up to dry so that she can make copies to mail off 😳😞 Sooo thats how my morning started...




Anyone else have a funny, embarrassing story they'd like to share?

Human Beings are God's love language {Part 2}

You can first watch this video or read the Part 1 of this post if you'd like. I wouldn't have been able to be where I am without my people. It really takes a village. I used to be a little too proud to accept help, and maybe why God has had to change my heart because I'm no longer in a position to just decline.




  • I've had gifts and cards sent or dropped off to me that lifted my spirits in the most trying times.

  • I've had people bring food over or cook meals for us.

  • I've had people just check on me and not freak out when I don't respond or take forever to.

  • I've had family members watch girls or take them out to go do something.



  • I've had many family members come over and clean.

  • I've had people call doctors or about medicine so I didn't have to.

  • I've had people cry with me (phone definitely counts) when I needed it most and hugged me.

  • I've had so much encouragement on the blog and social media with comments and feedback and I really had no idea how much that would affect me and give me an extra push when I'm feeling discouraged.


I want to thank all of you who have encouraged me, prayed for me, wrote me, texted me, called me, and helped me and my family in so many different ways.


Hebrews 6:1010 God is not unjust; he will not forget your work and the love you have shown him as you have helped his people and continue to help them.

The Past Two Weeks


It has been a difficult past two weeks. Unfortunately I feel like every update post has been described that way of how things are going the last six months. I've learned it's ok to acknowledge the negative to see how far you've come and answered prayers, but it's important to find and focus on the positive as well even during the difficult. Also lists are kinda my thing ;)


Negative - Had some scary new symptoms on Monday.


Positive - My sister called my husband to come home. There's no way I would've gone to the ER if she didn't push me, plus I didn't even have the energy to get out of bed or ability to not be curled up in a ball position.


Negative - My health is so complicated not even my family or husband know the extent of everything I have and I did not have energy to talk at all, let alone explain with my pain.


Positive - Thankfully I had just written this post and C was able to print it off and bring with us.


Negative - No one at the ER knew what any of my diseases were.


Positive - It was an opportunity to spread awareness for their next patients that had it or might have it.


Negative - They weren't able to help me and sent me home.


Positive - Nothing was going to kill me right then and there so that was good to know.


Negative - Morphine didn't even make a dent in the pain.


Positive - At least that did show how bad my pain was and they did give me some pain medicine in the meantime that would last at least and kind of help before I could see my GP.


Negative - My GP wouldn't be able to see me for a couple days. I hadn't been able to eat or drink water because of instant pain so we didn't want to wait.


Positive - The NP was able to get me in that day and had experience with unknown health issues so she was sympathetic and ordered scans immediately (and even called me at home that night at 11 when she was at home).


Negative - Scans didn't show anything.


Positive - Scans didn't show anything, but still no answers to what's causing my pain and how to get relief.


Negative - Cardiologist and Interventional Radiologist in Dallas couldn't do anything to help and what the NP had recommended to do without any other ideas.


Positive - It did get (thanks to my sister-in-law who had to call multiple times while she was on vacation) my Venogram finally scheduled, since come to find out they never sent my referral for it.


Negative - Unfortunately, it's not until October 1st.


Positive - It's given more time to research and be prepared how I want to treat after my Venogram.


Negative - My pain was so bad that I scared my mom and she called her doctor in tears in a desperate plea to help me.


Positive - Her doctor actually knew about EDS and my compressions. 


Negative - My mom's doctor had confirmed I had done all the right things, but there wasn't anything else to really do at the moment besides the Venogram I have scheduled with my Interventional Radiologist. 


Positive - She would get me in for an appointment  in a week and ended up getting me even quicker than we planned.  She actually gave me pain medicine until my Venogram. The first doctor in 6 months who understood my pain and wasn't going to let me suffer.


Negative - Pharmacy was out of that prescription for a week and a half.


Positive - Took a few days, but doctor was finally able to write a different prescription to get it available for me.


Negative - I was in a really bad way and was bedridden. I even had to miss a special event that had been in the works for months.


Positive - My mother and father-in-law were in town for the event so they were able to help out with the girls.


Negative - I have been doing so bad that I haven't been able to really get out of bed, let alone drive anywhere.


Positive - I do finally have my handicapped tags now for when I can thanks to my mom.


Negative - Filling out paperwork for my geneticist and reread over my cardiologist's very extensive last report and noticed another compression diagnosed that I somehow missed. That now makes it the total of 5 compressions that I have (which is the most and all of them I think you can have?)


Positive - I have some great support groups with others fighting these illnesses as well, so I've been able to reach out for advice and realize I am not alone because others are going through this as well.


Negative - I had just got my medicine and finally felt like a human being and that night Willa got a bug, therefore, I got a bug all weekend.


Positive - My sweet girls gave me some pretty precious moments in that discouragement. L would come bring me my cane and help me walk back to my room. W would come pat me and say "Mommy, you will feel better soon, I will take care of you."


Negative - I still have a week left of waiting until my venogram.


Positive - My sister is going with me and my mom is watching the girls so my husband doesn't have to take off since he will need his days when we decide surgery.


Negative - Right now things seem discouraging and overwhelming with all the things wrong and not knowing what is the best thing to do for surgery not to prevent more problems or pain.


Positive - I have been in this situation before and God has never left me or let me down. Look at all that has happened in the last six months in how He continues to constantly show up and give me sweet reminders I need.


I leave you (and remind myself) of a verse I prayed on and repeated over and over while I was on bed rest with my youngest daughter:

Isaiah 43:1-7 "But now, this is what the Lord says - he who created you, Jacob, he who formed you, Israel: “Do not fear, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you. When you walk through the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord your God, the Holy One of Israel, your Savior; I give Egypt for your ransom, Cush and Seba in your stead. Since you are precious and honored in my sight, and because I love you, I will give people in exchange for you, nations in exchange for your life. Do not be afraid, for I am with you; I will bring your children from the east and gather you from the west. I will say to the north, ‘Give them up!’ and to the south,‘Do not hold them back.’ Bring my sons from afar and my daughters from  of the ends of the earth— everyone who is called by my name, whom I created for my glory, whom I formed and made.”

9/24/2019

Spread Awareness

I was going to make another post before this one about the past two weeks, but I felt like I really needed to write this and share.


I have a hard time being honest about my health to others because 1) I don't want to scare or worry those I love 2) Everything is so complicated and not very interesting to most people 3) I don't want people to question my faith or doubt my hope and positiveness and 4) I really really have waited this long to even tell a lot of people or seek help because I didn't want to come across that I'm weak, or I'm doing it for attention, or trying to play the victim.


Unfortunately when health gets so debilitating it consumes your whole being and life where you can't function or do anything you used to, it's kinda hard to continue to just grin and bear it or pretend anymore.


Plus, God really put it on my heart I needed to start sharing. It still makes me nervous every time I push post to put any of this, or me, out there, BUT it if helps just one person get diagnosed early and not to have to go through years and years of pain and terrible symptoms, doctors not knowing what's wrong, or making you doubt and feel like it's in your head, then I need to suck up my uncomfortableness and do it.


You know for so long I just wanted answers so that I could fix my issues and just move on with my life. Answers aren't always easy to take when you learn what you have is a rare chronic illness that is only going to get worse called Ehlers Danlos Syndrome. Then when you find out more, that what's causing your pain isn't the 1 thing you thought it now could be, pelvic congestion syndrome, but actually 5 compressions including pelvic congestion syndrome, I have to admit that was pretty overwhelming and discouraging. It's taken a lot of praying, reading the Bible, seeking out guidance and inspiration, and leaning on my loved ones. And if I'm really honest, it's my two little girls and husband who make me never think twice about giving up. Sometimes I just need a minute to cry and talk to God and figure out how I'm going to keep in this fight.


I had a realization though that if I don't share just how real, and scary, and dangerous, and hard all my health issues are, how is anyone going to see all the blessings and my testimony of what He has, and is doing?


With this honesty I wanted to share other people's stories of what they are going through with these illnesses and I'm so proud of them for taking the leap to spread awareness. Because even after diagnosis, no one knows anything about any of these vascular compressions. Scans are reported normal when the proof couldn't be more evident. Doctors or nurses don't believe when there really is an emergency and you want to be proactive and save your life, but how, when no one knows enough about MALS, or SMAS, or NCS, or MTS, or PCS. I wish those were only my health problems, but the fact is I have like 10 more (that I even know of and have been diagnosed with at the moment).


Without further adieu, here's the other stories similar to mine motivating me in my current journey of figuring it out. I will continue to add more here as I come across.


















9/08/2019

Health Update 9/8/2019

You can read my all my diagnoses so far here. I also updated my About page if you'd like to take a look at my journey and specific posts on the blog.


  • Just had my first appointment Friday with the interventional radiologist, I was fortunate he even took me as a patient because he's not taking many anymore, but did on my cardiologist's behalf
  • In the process of diagnosing May-Thurner and Pelvic Congestion Syndrome with a venogram and seeing the degree of the Nutcracker compression to decide what route of surgeries (cardiologist was able to diagnose the Nutcracker with an ultrasound he had done Thursday)
  • Waiting for the call to know when we will schedule the venogram and how long of a wait
  • Depending how compressed the renal vein is for the Nutracker, treatment would be a kidney autotransplant
  • If I am confirmed with May-Thurner, we may stent the iliac vein first to see if there is relief. Coils are usually put in to treat the Pelvic Congestion Syndrome, but if there are compressions and those aren't fixed first, it can cause more pain and problems. If the Nutcracker compression is not severe enough for the transplant, and we try a stent or coils with no relief or symptoms improving, then we will go ahead and do the transplant as well.
  • My IR was honest and the pain and recovery for an EDS patient even for the stent and coils can be very difficult. Realistically everyone is so different you can't know ahead of time if you will get relief and if the relief may only be on a scale 3 points of an improvement.
  • Once coils are put in, they usually cannot be removed. If for some reason they need to be because of a reaction to the metal or the coil has traveled, many doctors will not perform the operation and if so, it will be open surgery.
  • There are also risks of not having treatment or surgery done. Because of the compressions and blood pooling, not only the pain and not being able to function, but blood clots and organ damage can be caused from not enough blood flow.
  • Thankfully I have the best doctors in the state and country, and awesome Facebook support groups that have feedback on the doctors, surgeries, and risks, but a lot to think about and trying to just pray and trust God on the best decision we can make.


Right now I'm in a valley, but that's ok.  

"In the valley, I will lift my eyes to the one who sees me there."

9/07/2019

"So what do you have, what's wrong?"



May was Ehlers Danlos Syndrome Awareness Month and when I had shared quite a bit of information on the blog about my health issues. September is Pain Awareness Month and I thought since I have gotten a lot of answers and diagnoses since then, I'd do a post on those now. Here's a breakdown of everything for those of you interested in the details and more explanation of what I have. It's also difficult when someone does ask me what I have or what's wrong, although I'm so thankful they do want to know, it's just quite complicated that I thought it might be easier to have it all written down in one place to share.


I have Ehlers Danlos Syndrome (EDS), a genetic connective tissue disorder that affects all the systems in your body. I was diagnosed with Hypermobile EDS by my rheumatologist and confirmed by my dermatologist, cardiologist, geneticist, and primary care practitioner with the Beighton Score Test, physical exam, genetic testing, and symptoms. As of right now, I have also been diagnosed with comorbidities of EDS that are Postural Orthostatic Tachycardia Syndrome (POTS), Mast Cell Activation Syndrome (MCAS), Arthritis-Adrenaline Disorder (AAD), MTHFR Gene Mutation, Median arcuate ligament syndrome (MALS), Superior Mesenteric Artery Syndrome (SMAS), Nutcracker Syndrome (NCS), May Thurner Syndrome (MTS), Chronic Venous Insufficiency (CVI), Thoracic Outlet Syndrome (TOS), Carpal Tunnel Syndrome, Raynaud’s, Vestibulopathy, TMJ Dysfunction, CranioCervical Instability (CCI), Costochondritis, Ichthyosis Vulgaris, Keloid & Hypertrophic Scars, Non-Alcoholic Fatty Liver Disease, Abdominal Aorta Atherosclerosis, Hypoplastic Ribs at T12, Sacralization of L5, Small Right Inguinal Hernia, Sinus Arrhythmia, & a Heart Murmur.


I was diagnosed with POTS by my cardiologist with a tilt table test.

A condition that affects circulation (blood flow). It involves the autonomic nervous system (which automatically controls and regulates vital bodily functions) and sympathetic nervous system (which activates the fight or flight response). POTS is a form of orthostatic intolerance, the development of symptoms that come on when standing up from a reclining position, and that may be relieved by sitting or lying back down.

Symptoms include:
    • High/low blood pressure 
    • High/low heart rate; racing heart rate
    • Chest pain
    • Dizziness/lightheadedness especially in standing up, prolonged standing in one position, or long walks
    • Fainting or near-fainting
    • Exhaustion/fatigue
    • Abdominal pain and bloating, nausea
    • Temperature deregulation (hot or cold)
    • Nervous, jittery feeling
    • Forgetfulness and trouble focusing (brain fog)
    • Blurred vision
    • Headaches and body pain/aches (may feel flu-like); neck pain
    • Insomnia and frequent awakenings from sleep, chest pain and racing heart rate during sleep, excessive sweating
    • Shakiness/tremors especially with adrenaline surges
    • Discoloration of feet and hands
    • Exercise intolerance
    • Excessive or lack of sweating
    • Diarrhea and/or constipation (source)
    ________________________________________________________________

    I was diagnosed with MCAS by my allergist because of symptoms and relief from treatment (bloodwork did not confirm because it can be difficult to get the bloodwork and 2x24 hour urine samples done while knowing when you are in a flare).

    When the mast cells in your body release too much of the substances inside them at the wrong times. Mast cells are part of your immune system. They’re found in your bone marrow and around the blood vessels in your body. When you’re exposed to stress or danger, your mast cells respond by releasing substances called mediators. Mediators cause inflammation, which helps your body heal from an injury or infection. This same response happens during an allergic reaction. Your mast cells release mediators to remove the thing you’re allergic to. For example, if you’re allergic to pollen, your mast cells release a mediator called histamine, which makes you sneeze to get rid of the pollen. If you have MCAS, your mast cells release mediators too frequently and too often.

    Symptoms include:
      • Skin: itching, flushing, hives, sweating
      • Eyes: itching, watering, nose: itching, running, sneezing
      • Mouth and throat: itching, swelling in your tongue or lips, swelling in your throat that blocks air from getting to your lungs
      • Lungs: trouble breathing, wheezing
      • Heart and blood, vessels: low blood pressure, rapid heart rate
      • Stomach and intestines: cramping, diarrhea, nausea, abdominal pain
      • Nervous system: headache, dizziness, confusion, extreme tiredness (source)
      ________________________________________________________________

      I was diagnosed as homozygous for the C677T variant in the MTHFR Gene by my maternal-fetal medicine specialist and primary care practitioner with genetic testing.

      Methylenetetrahydrofolate reductase, or MTHFR, is an enzyme that breaks down the amino acid homocysteine. The MTHFR gene that codes for this enzyme has the potential to mutate, which can either interfere with the enzyme’s ability to function normally or completely inactivate it. Homocysteine is an amino acid that the body produces by breaking down dietary proteins. High levels of homocysteine can damage blood vessels and lead to blood clots. People who have high homocysteine levels tend to have low levels of vitamin B-12. Women who test positive for an MTHFR mutation may have an increased risk of preeclampsia, blood clots, recurrent miscarriages, or giving birth to a baby with congenital disabilities.

      Symptoms of homocystinemia due to MTHFR mutations include:
      • Abnormal blood clotting
      • Developmental delays
      • Seizures
      • Microcephaly
      • Blood clots
      • Poor coordination
      • Numbness or tingling in the hands and feet (source)
      ___________________________________________________________

      I was diagnosed with AAD by my geneticist with an evaluation and my symptoms.

      (source)

      ________________________________________________________________

      I was diagnosed with MALS by my cardiologist with a color doppler ultrasound.

      A condition in which the median arcuate ligament presses too tightly on the celiac artery (a major branch of the aorta that delivers blood to the stomach, liver, and other organs) and the nerves in the area (celiac plexus).

      Symptoms include: The first sign of MALS is pain in the upper abdomen after eating. The pain causes patients to avoid eating, which can lead to weight loss. Other associated symptoms may include:
      • Nausea
      • Diarrhea 
      • Vomiting 
      • Delayed gastric emptying (a delay in food moving from the stomach into the small intestine (source)
       ________________________________________________________________

      I was diagnosed with SMAS by my cardiologist with a color doppler ultrasound.

      A digestive condition that occurs when the duodenum (the first part of the small intestine) is compressed between two arteries (the aorta and the superior mesenteric artery). This compression causes partial or complete blockage of the duodenum.[1] Symptoms vary based on severity, but can be severely debilitating. SMAS typically is due to loss of the mesenteric fat pad (fatty tissue that surrounds the superior mesenteric artery).

      Symptoms include:
      • Abdominal pain
      • Feeling full quickly when eating
      • Bloating after meals
      • Burping (belching) 
      • Nausea and vomiting of partially digested food or bile-like liquid 
      • Small bowel obstruction 
      • Weight loss 
      • Mid-abdominal "crampy" pain that may be relieved by the prone or knee-chest position or by lying on the left side (source)
      ________________________________________________________________

      I was diagnosed with NCS by my cardiologist with a color doppler ultrasound and CT Angiogram.

      A condition that occurs when the left renal vein (the vein that carries blood purified by the left kidney) becomes compressed.

      Symptoms include:
      • Blood in the urine (hematuria) which can occasionally cause anemia requiring blood transfusions
      • Abdominal or flank pain that may radiate to the thigh and buttock. Pain may be worsened by sitting, standing, walking, or riding in a vehicle that shakes.
      • Chronic fatigue syndrome and fatigue symptoms
      • Pelvic congestion syndrome, causing symptoms such as chronic pelvic pain, pain during intercourse, painful or difficult urination, painful menstrual cramps during periods, and polycystic ovaries
      • Orthostatic proteinuria (elevated protein excretion while in the upright position)
      • Orthostatic intolerance (feeling light-headed or having palpitations when standing upright) (source)
      ________________________________________________________________

      I was diagnosed with MTS by my interventional radiologist and confirmed by my vascular surgeon with a venogram and a CT Angiogram.

      Caused when the left iliac vein is compressed by the right iliac artery, which increases the risk of deep vein thrombosis (DVT) in the left extremity. DVT is a blood clot that may partially or completely block blood flow through the vein. (source)

      With a DVT, symptoms include:
      • Changes in skin color, with it looking more red or purple than normal
      • Heaviness, tenderness, or throbbing
      • Pain that feels like a cramp or charley horse
      • Skin that’s warm to the touch
      • Swelling
      • Veins that look larger than usual (source)
      ________________________________________________________________

      I was diagnosed with CVI by my cardiologist and confirmed by my interventional radiologist with ultrasounds. Reflux of right common femoral, great saphenous, lesser saphenous, popliteal, & peroneal veins. Reflux of left common femoral, great saphenous, posterior tibial, & peroneal veins.

      Valves in your veins (usually in the leg or sometimes the arms) don't work, causing blood to pool in your legs and putting increased pressure on the walls of the veins. May be due to valve dysfunction (usually hereditary) or due to valve destruction after a deep vein thrombosis (DVT) or blood clot.

      Symptoms include:
      • Heaviness in the affected limb
      • Swelling
      • Pain (source)
      ________________________________________________________________

      I was diagnosed with TOS by my cardiologist with a color doppler ultrasound and ROOS Test.

      Thoracic outlet syndrome refers to a group of conditions characterized by the compression of the nerves, arteries, and veins that pass through the space between the collarbone and the first rib. This space is known as the thoracic outlet. Anything that narrows the space inside the thoracic outlet can put pressure on the blood vessels and nerves. This can cause pain in the neck, shoulders, and arms.

      Symptoms associated with venous thoracic outlet syndrome include:
      • Pallor or paleness in one arm
      • A weak pulse in the arm
      • Pain, tingling, or swelling in the arm and hand
      • Weakness or a loss of sensation in the arm and hand (source)
      ________________________________________________________________

      I was diagnosed with Carpal Tunnel Syndrome by my neurologist with EMG Testing.

      Carpal tunnel syndrome is a painful, progressive condition that occurs when the median nerve in the wrist is compressed. Also known as median nerve entrapment or median nerve compression, it may happen when a nerve swells, the tendons become inflamed, or something causes swelling in the carpal tunnel.

      Symptoms include:
      • Pain
      • Numbness
      • Tingling
      • These symptoms occur in the thumb and the two fingers next to it, as well as half of the ring finger. They may extend to the rest of the hand and into the forearm.
      • As the condition progresses, symptoms may persist during the day. The person may lose grip strength and find it harder to form a fist or grasp small objects. Opening a bottle of soda, doing up buttons, or typing on a keyboard can become a challenge.
      • If left untreated, the muscles at the base of the thumb may wither away, and the person may no longer be able to tell hot from cold with the thumb and finger. (source)
      ________________________________________________________________

      I was self diagnosed with Raynaud’s by my symptoms.
      • A person with Raynaud’s disease experiences pain in the extremities, for example, the fingers, when temperatures drop.
      • Blood vessels narrow and almost completely shut down. Fingers or toes turn from white to blue and, then, as the blood returns, they flush red. (source)
      ________________________________________________________________

      I was diagnosed with Vestibulopathy by my cardiologist with VNG Testing.
      • A disorder characterized by dizziness, imbalance, nausea, and vision problems.
      • Pathological processes of the vestibular labyrinth which contains part of the balancing apparatus. Patients with vestibular diseases show instability and are at risk of frequent falls. (source)
      ________________________________________________________________

      I was diagnosed with Costochondral Separation by a physical trainer with a physical exam.

      Each of your ribs is connected to your breastbone by a piece of cartilage. The point where your rib connects to this cartilage is known as your costochondral joint. Costochondral separation is an injury that occurs when one or more of your ribs separates from this cartilage. This type of injury is also called a separated rib.

      Symptoms include:
      • Sharp pain between your rib and breastbone
      • Sharp pain when breathing, sneezing, or coughing
      • Pain that comes and goes
      • A popping feeling when the injury happens (source)
      ________________________________________________________________

      I was diagnosed with Costochondritis by a physical trainer with a physical exam.

      The ribs are connected to the breastbone by tough, protective tissue called cartilage. When this cartilage becomes inflamed, the condition is known as costochondritis or chest wall pain. While this condition is usually temporary, it can be alarming, as the pain can become so significant it mimics a heart attack.

      Symptoms include:
      • Chest discomfort and pain may be stabbing, burning, or aching in nature. The ribs most affected are the second to fifth ones.
      • The following activities usually worsened the pain associated with costochondritis:
      • Significant amount of coughing
      • Strenuous exercise
      • Physical activity using the upper arms, such as lifting boxes (source)
      ________________________________________________________________

      I was diagnosed with TMJ Dysfunction by my primary care practitioner with a physical exam and symptoms.

      The temporomandibular joint is located at the base of the skull. Commonly referred to as the TMJ, it allows for the movement required for chewing and talking. The joint connects the mandible, which is the lower jaw, and the temporal bone, which is on the side of the skull. Since the TMJ allows for movement both up and down as well as from side to side, it is one of the most complex joints in the body.

      There is a range of symptoms linked to TMJ, including:
      • Pain
        • One of the most obvious symptoms of a TMJ disorder is pain that is felt when moving the jaw. However, other symptoms that may occur with a TMJ disorder include headaches or migraines, neck ache or backache, and earaches or pain around the ear that spreads to the cheeks.
        • If the pain is not located near to the jaw, a doctor will often look for other symptoms before diagnosing a TMJ disorder.
      •  Sounds
        • A common but often painless symptom is an unusual popping, clicking, or even grinding noise that can occur while eating, talking, or simply opening the mouth.
        • Noises that occur when moving the jaw are not always a symptom of TMJ disorders. In fact, jaw noises are quite common. It is only when the sounds occur alongside pain or limited movement of the jaw that medical advice may be needed.
        • Buzzing, ringing, or numbness in the ears can occur alongside earaches, and these symptoms can also be associated with TMJ disorders.
      • Restricted movement
        • Limited movement that prevents the mouth from being opened fully or the jaw from being moved in certain directions can cause severe discomfort in everyday life. (source)
      ________________________________________________________________

      I was diagnosed with CCI by my geneticist with an evaluation and symptoms.

      Craniocervical Instability, also known as the Syndrome of Occipitoatlantialaxial Hypermobility, is a structural instability of the craniocervical junction which may lead to a pathological deformation of the brainstem, upper spinal cord, and cerebellum. It primarily occurs in patients with Ehlers-Danlos Syndrome and other hereditary disorders of connective tissue. About 1 in 15 people with EDS will go on to develop CCI due to a lack of connective tissue support at the craniocervical junction. While some EDS patients present with this condition after a head and neck injury (such as whiplash), for the most part this condition tends to manifest gradually through repetitive stretch injuries from actions as simple as turning one’s head.

      Symptoms include:
      • A heavy headache: a constant to near constant headache that can be described as feeling like the head is too heavy for the neck to support (feeling like a “bobble-head”)
      • A pressure headache: an impairment of CSF flow causes intracranial pressure which would be aggravated by “valsalva maneuvers” such as yawning, laughing, crying, coughing, sneezing or straining.
      • Dysautonomia: brainstem compression can lead to a dysfunctional autonomic nervous system (the involuntary regulator of all body functions). Symptoms of this include, but are not limited to:
      • Tachycardia (rapid heart)
      • Heat intolerance
      • Orthostatic intolerance (low blood pressure when standing)
      • Syncope (fainting)
      • Polydipsia (extreme thirst)
      • Delayed gastric emptying
      • Chronic fatigue
      Other symptoms include:
      • Neck pain
      • Central or mixed sleep apnea
      • Facial pain or numbness
      • Balance problems
      • Muscle weakness
      • Dizziness and vertigo
      • Vision problems
      • Reduced gag reflux and difficulty swallowing
      • Ringing in the ears and hearing loss
      • Nausea and vomiting
      • Impaired coordination
      • Downward nystagmus (irregular eye movements)
      • Paralysis and more (source)
      ________________________________________________________________

      I was diagnosed with Ichthyosis vulgaris by my dermatologist with a physical exam.

      Ichthyosis vulgaris is a type of ichthyosis, a group of related skin conditions that interfere with the skin’s ability to shed dead skin cells, causing extremely dry, thick skin.

      Symptoms include:
      • Ichthyosis vulgaris may present as skin dryness with accompanying fine, white, or skin-colored scales. Often, the skin will also flake.
      • The scaling associated with ichthyosis vulgaris can also cause the skin to crack in areas that are severely or persistently affected. Cracking most often occurs on the soles and palms.
      • Scaling can also lead to general discomfort and pain and make the skin more vulnerable to irritation and further drying. While rare, in some people with ichthyosis vulgaris, scaling interferes with the sweat glands causing either excessive sweating (hyperhidrosis) or an inability to sweat. (source)
      ________________________________________________________________

      I was diagnosed with Keloid & Hypertrophic Scars by my dermatologist with a physical exam.

      Hypertrophic scars occur when there is a lot of tension around a healing wound. These scars are thick and raised, and often red in color. They may remain like this for several years. Hypertrophic scars are the result of an imbalance in collagen at the site of the wound. Keloids are reddish nodules that develop, as gristle-like connective tissue forms to heal a wound. A keloid continues to form even after the wound has healed, resulting in a large mound of scar tissue.

      Symptoms include:
      • Both keloids and hypertrophic scars can be painful and itchy. They generally occur on the upper body, upper arms, shoulders, neck, or earlobes.
      Characteristics of a hypertrophic scar include:
      • Restricting movement, as the skin is no longer as flexible
      • Forming within the boundaries of the original wound
      • Creating healing tissue that is thicker than usual
      • Being red and raised to start with but becoming flatter and paler over time (source)
      ________________________________________________________________

      I was diagnosed with Non-Alcoholic Fatty Liver Disease by my primary care practitioner with an MRI.

      The liver typically contains some fat. However, if it builds up, it can cause fatty liver disease. This means that the liver is not able to function normally. Fatty liver disease can occur when there is more than 5% fat in the liver.

      Symptoms include:
      • Loss of appetite
      • Feeling sick or vomiting
      • Weight loss 
      • Tiredness (source)
      ________________________________________________________________

      I was diagnosed with Abdominal Aorta Atherosclerosis by a CT Angiogram.

      Atherosclerosis is a narrowing of the arteries caused by a buildup of plaque. It can result in a shortage of blood and oxygen in various tissues of your body. Pieces of plaque can also break off, causing a blood clot. If left untreated, atherosclerosis can lead to heart attack, stroke, or heart failure. (source)

      Most symptoms of atherosclerosis don’t show up until a blockage occurs. Common symptoms include:
      ________________________________________________________________

      I was diagnosed with Hypoplastic Ribs by a CT Angiogram.

      Labeled at T12. Means there are four lumbar vertebrae and the lumbosacral junction is at L4-L5.

      ________________________________________________________________

      I was diagnosed with Sacralization of L5 by my physical therapist with a physical exam and confirmed by a pain specialist with an X Ray and CT Angiogram.

      Sacralization is a common irregularity of the spine, where the fifth vertebra is fused to the sacrum bone at the bottom of the spine. The fifth lumbar vertebra, known as L5, may fuse fully or partially on either side of the sacrum, or on both sides. Sacralization is a congenital anomaly that occurs in the embryo.

      Other symptoms associated with sacralization may include:
      • Arthritis at the fusion site 
      • Bursitis 
      • Disc degeneration
      • Biomechanical difficulties in movement
      • Limits to range of motion
      • Posture control problems 
      • Scoliosis 
      • Leg pain, buttock pain (source)
      ________________________________________________________________

      I was diagnosed with a Small Right Inguinal Hernia by a CT Angiogram.

      An inguinal hernia occurs when part of the intestine or fatty tissue pokes through a weakened area of the abdominal wall to either side of the inguinal canal. The inguinal canal is a passage that occurs on each side of the lower abdomen and connects to the genitals.
      Symptoms of an inguinal hernia may not appear at first. One of the first symptoms may be the feeling of heaviness or pressure on the groin. Other symptoms may occur as the hernia grows larger. Some of the symptoms of an inguinal hernia may include:
      • Small bulge to one or both sides of the groin that may disappear on lying down
      • The scrotum may appear enlarged in males
      • Pressure or heaviness in the groin
      • Weakness in the groin
      • Pain, burning, or gurgling at the bulge site
      • Sharp pain or discomfort that increases when lifting, coughing, bending, or exercising
      There is a risk that part of the intestine may become trapped in the abdominal wall, which can cause a loss of blood flow to this section of the intestine. This condition is an incarcerated hernia and typically causes severe pain, fever, and an increased heart rate. If the blood supply to the intestine does not resume quickly, the part of the intestine that is protruding may die. Someone with an incarcerated hernia requires immediate medical attention. (source)
      ________________________________________________________________

      I was diagnosed with a Sinus Arrhythmia by my cardiologist with a heart monitor.

      Sinus arrhythmia does not relate to the sinus cavities in the face but to the sinoatrial or sinus node in the heart. The sinoatrial or sinus node is located in the upper chamber on the right side of the heart, which is called the right atrium. The sinus node is known as the heart’s natural “pacemaker,” meaning it is responsible for the rhythm of a person’s heartbeats. Normal sinus rhythm is a regular rhythm found in healthy people.Sinus arrhythmia means there is an irregularity in the heart rhythm, originating at the sinus node. (source)

      ________________________________________________________________

      I was diagnosed with Heart Murmur by a general practitioner and confirmed by my cardiologist with a physical exam.

      Heart murmurs result from vibrations, or turbulence, that blood causes when it flows through the heart. It produces sounds that doctors can hear through a stethoscope.When heart valves open and close, they make a “valve sound.” However, valves that do not open or close normally can cause blood to leak backward or prevent blood from flowing forward, which can create a sound called a murmur. Blood that moves very quickly through the heart can also create a type of murmur called a “flow murmur.”
      Symptoms include:
      • Shortness of breath
      • Dizziness
      • Fainting
      • Bluish skin
      • Chronic cough
      • Palpitations
      • Swelling in the legs or abdomen (source)
      ________________________________________________________________

      Currently waiting for diagnosis of Interstitial Cystitis (IC)

      A chronic bladder problem. Your bladder holds pee after your kidneys have filtered it but before you pee it out. Symptoms can come and go. Or they may be constant. Interstitial cystitis causes urgent, often painful bathroom trips. You may have to pee as many as 40-60 times a day in severe cases. It can even keep you up at night. The bladder pain people feel with IC can range from a dull ache to piercing pain. Peeing may feel like just a little sting, or it can feel like serious burning.

      Symptoms include:
      • Bladder pressure and pain that gets worse as your bladder fills up.
      • Pain in your lower tummy, lower back, pelvis, or urethra (the tube that carries pee from your bladder out of your body)
      • For women, pain in the vulva, vagina, or the area behind the vagina
      • The need to pee often (more than the normal 7-8 times daily)
      • The feeling you need to pee right now, even right after you go
      • For women, pain during sex (source)
      ________________________________________________________________