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"