out of the silence: part three

Part two ended recounting my second procedure in Pozań, Poland on Friday 13.September.

Most painful IV. EVER..

Entrance to the clinic

Paper scrubs. Fancy :-)

Warning about the following text:

It’s about to get very vulnerable up in here.

If parts one and/or two elicited tears, well, I warned you.

I (found and) re-read It's all about the blood flow (and Benjamin's) baby! (post from January 6, 2018) and noticed the following:

"To lay it all out there, God met me at the bottom (even though I was SUPER angry and scared), lifted me from my despair to be apart of His plan/purpose for my life."

Sounds like I was in a dark place then too...guess it's been awhile down here...

Little did I realize at the beginning of 2019 that the hole and darkness was about to get deeper.

But notice God met me in that darkness.

I'm forever grateful for that.

I also wanted to start off by saying that I write this not only for cathartic reasons, but I do want someone, anyone, to know that ANY darkness/sadness can ultimately be used for good (even when it seems "not as dark" or "something little". The darkness can refine us (more on that in a future blog post).

Back to Poland....

The doctors attempted (for over an hour) to access my right internal jugular vein directly above the “scar tissue” using a cannulated needle. The plan was to get the needle into the vein, thread a wire into the vein through the needle, attempt to dilate, then stent.

During that part of the procedure, not only because of the discomfort, but my silent tears were also due to the realization that the scar tissue was impassable and there would be no dilation. I was attempting to remain still after they gave up on the IJ because they still had to place stents in my left renal vein. Thankfully, that was straightforward and completed quickly.

When I say I was devastated, that’s putting it mildly. 

Maybe it was partially because of the drugs (or lack there of) but I cried, and cried, and cried.

The tears wouldn’t stop. For hours.

I felt let down.

Not by my doctors and the team. 

By God.

Even though I knew there was a possibility there would be failure, I wasn’t prepared for it.

I had felt like the whole trip, timing and everything had been just right and I believed in a miracle.

I was sad for Simon, the girls, my family and friends.

Failure wasn’t my plan. 

I couldn’t let go of my plan.

Anyone need a small ray of hope right about now? Maybe it's because I'm reliving this as I write...

Anyway, I did notice some mild improvement from the dilation of the left IJ/azygos veins and placement of renal vein stents. I'm happy the doctors were willing to look and do something with the renal vein. I don't mean to sound ungrateful. I was obviously focusing on the negative...which I sadly tend to do. I was so glad to be talking with doctors who didn't think I was crazy and only saw me with MS. We talked (for two hours) about the venous aspect of this whole thing. It was really great.

However, I had been holding on to the feeling I had after my first procedure. I wanted it back so badly. The procedure had changed me, not only physically, but mentally. I had hope again.

When that didn’t happen. I was lost.

Tears threaten me even as I type this now.

Speaking of tears, there have been MANY, OK BUCKETFULS of tears over the past year and a half.

Since August 2018, the tears have not only been plentiful, but they come more easily, randomly and often at very inopportune times.

It's a very different feeling for me. Being so emo.

Now what?

Ok, back to my recap, tears and raw emotions.

I recovered quickly, minus the pain in my neck from 30 puncture wounds! I looked like I had been attempting to use IV drugs in my neck for a week straight. The muscles were sore, the skin was sore, it was all around miserable.

quick reminder of my neck puncture wounds

More rays of sunshine. All remained well, I had a repeat MRV (MRI to look at my venous blood flow) Monday. The left IJV was still patent (fancy medical term for open)

Tuesday we went on a fabulous tour of Poznań (set up by Jan, with our very own private tour guide) complete with the history and making Poznań's St. Martin's croissants.

Ballet Academy in Old Town Poznań

View of the clock tower from the "new" Royal Palace

Vera making St. Martin's Croissants

We departed Poznań on 18.Sept and headed for Berlin.

Lots of screen time on the trains...

Over the next 24hours my sprits were lifted a little since I did pretty well on the walking tour in Poznań and traveling…

Which included a long train ride, a lot of walking around Berlin to find our hotel all while carrying a backpack and a two year old (even though in most pictures, Simon is carrying both girls!).

In order to see the most of Berlin without a lot of walking, we chose the "Hop-on-hop-off" bus tour. It was pretty awesome.

Simon Bolivar statue

TV tower of Berlin

Brandenburg Tor

  

The rest of our trip (a visit with friends in Stuttgart) was a tough test, which my body failed (although it was such a fabulous trip). I tired very easily, my legs became heavy easily, I couldn't walk very far, etc.

pack mule dad; arriving in Stuttgart

World's largest Pumpking Festival in Ludwigsburg, Germany

Ludwigsburg Residential Palace

we only had one rainy day in Stuttgart!

 so we visited the Stuttgart Municipal Library, which is architecturally amazing

Ready to catch the train to Frankfurt (then a flight to the USA)

When we returned from Europe, a dark sadness had settled over me.

I didn’t want to face people who were excited to see my improvement and hear about our trip.

I felt like people would be disappointed. I dislike disappointing people.

I was struggling. I have never dealt with the strength of the darkness and sadness that was weighing so heavily on me.

I faked my way through most of the days. In reality, I was living in a deep dark hole and I could barley see any fragments of light.

I was afraid of the tidal wave of emotion sitting just underneath the surface, ready to break free at any moment.

It tough to fake your way though with a two and four year old. They need A LOT of attention. Crying is confusing for them. Although, I held it together during the day and would let it out at night.

My life didn’t feel real anymore. I was just existing in a space where everything I once identified myself with was gone and I couldn’t see what could be ahead.

Very few know this but 12-14.Oct, I didn’t really get out of bed. I cried for almost two days straight. Thank God for my husband who had an idea I needed to break wide open and took such good care of me and the girls.

I was so tired. Tired of trying to solve a very difficult problem. There were some more answers, which was great.

I had looked forward to the trip to Poland for nearly a year. I had planned for things to be so good again, like after my procedure in Dayton.

There I went, making plans again.

I kept asking the questions that come when you’re in that dark place.

Why? What now?

Thankfully, God again reached down into my darkness again and lifted me out. I had prayed for His presence.

I cried out to God a lot. Most of the time really. With a lot of ugly crying and laying on my face. Even when I was silent, I was still desperately, frantically searching for God.

I wanted His presence. I NEEDED His presence. I was still trusting that His plans are more awesome than ours.

Since this post had already exceeded the limits of time and emotion, I will save my “rescue story” for part four.