vascular compressions: the waiting

Nice little family sunset walk

February somehow managed to feel like the longest month of the year, despite the fact that it's the shortest. I would have thought that being continuously occupied and showered with mild weather would have made the time fly by. I've surmised that fighting through each day must drag things out more than I thought. I was reflecting on the past weeks and initially thought not much has happened in terms of testing and appointments since I last wrote. Turns out that wasn't fully accurate as I had forgotten a few things along the way. Since I work at an accounting firm, no one will be shocked to know that it's been steadily busy. February historically is a bit up and down and we sometimes get a slower period in the admin department. This year that was not the case at all. At times it actually felt like we were drowning. The good news is that I love the team I'm on and that makes things better. Working less would likely help me through this journey, but I suck at doing that when work is the way it currently is. My team-oriented nature always seems to yell loudly and keeps pushing me forward. This doesn't mean I've been without very bad days and days where I've had to say that I need a break.

About three weeks ago I had a follow-up call with the interventional radiologist that did my celiac plexus block. He wanted to discuss how the block went and if we should administer again with the added ethanol to make it last longer. I was honest and said that I felt a little better but not a lot better. And he was honest and said, if I was your family, I'd likely tell you to not go through with it. This is based on the fact that it didn't give me major relief AND the fact that doing the block was incredibly challenging. He said the space where he had to inject between the celiac artery and the superior mesenteric artery was only a few millimeters. Not sure if anyone remembers, but he had to poke me numerous times to find the right spot. So this tracks.  

I also met with my primary care doctor just to do a check-in and talk about options to help me through this. I happily took a prescription for Zofran to help with my nausea. We also discussed some other medications that could potentially help with sleep. I decided at this point getting adequate sleep seems like a good focus. After talking through potential side effects I decided to not try any of them at this time. Introducing anything that could potentially make things worse felt too daunting to me.

Let's see... I also had a call with my OKC doctor. We went over all the tests I've done thus far. I'm told I am currently in first place for getting my crap together the quickest. This made me laugh. It has actually felt like far too long to me. But I will take the compliment I suppose. I didn't walk away with any certainties. Just that the venogram and angiogram are the last steps and that will pull together the full picture to create the plan for me. She said I've likely always had MALS and have learned to live with it. Looking back this makes a lot of sense. It has just gotten worse over time to the point that the pain is constant. She also thinks I may have SMAS (Superior Mesenteric Artery Syndrome) which is where the SMA compresses my duodenum. The duodenum connects the stomach to the small intestine. So if you can visualize food just getting stuck in there continuously and how that might feel. It's likely this happened because of the MALS. Due to MALS I've had several bouts of weight loss over the years. Because of this I've lost the fat pad between my superior mesenteric artery and my abdominal aorta. That fat pad keeps the duodenum and the left renal vein from getting squished. It's possible my renal vein is also compressed but we aren't certain yet. This will show better on my venogram.

I was going to do my venogram in Oklahoma as well. But with scheduling I would have needed to be down there over a week since they can't do the venogram and angiogram the same day, but they also only do them on Thursdays. So I asked for a venogram referral in MN. This seemed a simple request in my mind. I was wrong. This complicated things. It took over 2 weeks for them to find someone to refer me to. Once I had a name I wasn't able to schedule anything until March 1. I was bummed about this initially but then decided I was fine with a break in February. I really went into this consult thinking it was just going to be a simple chat and we could get it scheduled. That was NOT the case. I had already done a consult with a Dr in OKC and they had already gotten prior authorization from insurance. In my mind, this would just be transferred. Nope, not true. I did a pelvic ultrasound before meeting with the doctor. This showed that blood is in fact flowing backwards in some of the veins in my pelvis. The doctor said... it's not gushing, but it's also not normal. Okay, cool. The doctor asked me approximately one million questions. After awhile it started to feel like I was under interrogation and I was really losing steam. I know he was just trying to get all the information, but when I finally got to my car I felt absolutely deflated. I felt so frustrated, angry, and sad all at the same time. More than anything I think it just triggered me. It wasn't all directly related to that specific doctor and visit, it’s just all a lot as a whole. My other frustration was that they didn't have my records BEFORE my visit. And yes, I did call before my appointment and ask about this. How I wish I would have just planned ahead on my own and got them sent over and just picked up my disks and brought them there myself. This has naturally slowed the whole process down because it took over a week before they got them. It was a whole debacle. So I have no idea if I'll be able to get this venogram done before I go to Oklahoma like I was supposed to. "If I could turn back time... If I could find a way... " The rest of that song doesn't apply. But I would say something about having a magic 8 ball that told me to just take the appointments in Oklahoma and coughed up the cost to stay there for over a week and work remotely.

Vascular and Interventional Experts has a nice waiting area

Somedays when I wake up after just a few sips of water I feel nauseous and wish I could vomit. Somedays I cry at my desk or in the bathroom. And every day there's constant nagging pain in my abdomen and back that worsens each time I eat or drink. Sadly, that's just a snippet of the symptoms I experience throughout each day. I honestly am not sure how I'm getting through it. Working full-time... sometimes with overtime... parenting (with lots of help)... and I even managed a few social events in February. My family and friends continue to be my compass keeping me in the right direction. I have many moments of feeling quite helpless and that nagging feeling of being a burden. My sane, rational mind knows I'm not. I also smile each day, give my best (which looks different depending on the hour), and count my blessings.

So as for next steps. I have my angiogram in Oklahoma City March 21st. And the venogram is TBD.

<3

Ash

Kerstyn's daugher, Blaire, came to the office for a visit!

My mom got Otis hooked on Belvita Breakfast Biscuits and he can't go a day without them. 

Violet and Tabitha kicking off the first lemonade stand of the year... in February!

Goofing off at work. Our Costco snacks arrived so I decided to see if I'd fit in the box.
And then it started caving on me ;)

Paint and Sip event for Mankato Young Professionals

Just a weekend morning at the Suker household.

I decided to join the Sloth Run to raise awareness for abdominal vascular impressions. Lauren made a fab logo, Kerstyn printed it on shirts, and I asked my co-workers to gather for a walk around the block. Many people also donated to the foundations and We BeDazzle was the top team!

Kerstyn and I went to the CADA Galentine's Event at the Capital Room!
It was fun to dress up for a bit :)

We don't get much time together without the kids around. And sometimes it takes us three nights to get through a movie. But we put forth effort to steal the moments we can.

Felt cute!

The fatigue is never-ending. But one random weekend I slept and slept which felt so good! I don't remember the last time I slept in that late. Usually the kids are loud, so I'm not even sure how this happened.

Theodore and I messing around with Snapchat filters

Otis is a big fan of books which I'm very appreciative of! Because if he isn't sitting with books he is on the go nonstop. So this is my way of stealing snuggles from him still. He loves his siblings!

Ben snuck off for a quick trip with his friend to Big Sur and Death Valley to take stunning photos!

My mom came and stayed with us while Ben was gone. I need all the helping hands I can get somedays.

Otis got his first haircut! He started out okay and then was very over it!

Theodore dressed up for his Science Fair debut! Him and his friend get to take their project to MSU for regionals at the end of April.

The heating pad and I are VERY close companions. Sometimes multiple of them ;)

Most days Walgreens is just a bit too far for me to walk. I unfortunately am unable to tolerate much physical activity these days. Looking forward to the future when I CAN do more again! This was a random morning we jump started the day with a longer walk.

Found this in my phone. haha! I guess Violet or Theodore captured me working one day ;)