vascular syndromes, cavitations, and pituitary adenomas

Here we are again. I don't know if I've ever thought, surely this is the hardest thing I'll go through. I mean challenges will continue to happen in life. But I did however think I might get a wee break, maybe, possibly?! We'll come back to that in a minute. At work we've been focusing on client experience. We've embarked on a multi-session training course about it. In one of our sessions there was a theme that kept popping up, how we make people feel. This is all very valid, but I think I was still a little in awe that in the corporate world we were talking so much about feelings. I personally love talking about feelings! No one is surprised by this. Anyhow, this discussion made me think about the keepsake I recently got after Ginny passed. Several of us ordered something with Ginny's fingerprint embossed on it. On the back we could engrave whatever we wanted, but with only so many lines and characters. When we were planning her service we reflected a lot on what embodied Ginny. Annie had brought up that this was one of Ginny's favorite quotes:

“I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.”

― Maya Angelou

It really made me think about how true that is, especially for Ginny. She always made a point to tell people how they made her feel. I thought back to a Suker family text chain we had. A few of us were on a call to support Annie. After the call, Ginny texted, "I am so happy that you are my siblings." Ben and Annie are fabulous, so I agree. Then she wrote, "And I have told you about how Lucy names everything Ashlee. I understood it today. Watching you, Ashlee, on video conference, you radiate warmth and joy. Just by sitting and listening, you communicated goodness. Sunshine." I honestly was speechless, but came up with a lame thank you that didn't encompass how it made me feel entirely. There weren't words for it really. I honestly often feel quite average and sometimes even subpar. Yes, I know, it's not nice of me to think that way about myself. Ben reminds me all the time. But I really honestly feel like a subpar aunt often times. After Ginny passed I remember thinking that I really need to step it up in that category. I suppose now reading that text again that they've never thought of me as subpar. I'm just me and they embrace my presence whether I'm having a good day or a hard day. They still see joy and warmth. And it wasn't just one text, there are so many times she made a point to say these wonderful things. I hope I said wonderful things that made her feel good too. I know there were times when she felt like an inadequate mother and I made sure to point out how wonderful she was. And also shared my parenting woes to mark how very normal the challenges are. And frankly, sometimes these challenges are quite funny if you take a step back. This is all just to say that we often make impacts without realizing it. So when I had to come up with something to put on my pendant, I knew it had to be part of that quote. It managed to be the perfect amount of characters to fit within the limitations. It felt meant to be.

Since I last wrote there have been a couple challenges thrown at me. Some I've taken in stride and others that have knocked me down. I keep managing to get back up though. I'm going to try and write a quick summary about the past few months. If you ask Ben, he will tell you that my stories are never quick. So I will tell you a medium length summary ;)

August takes the cake for the worst month in 2023 for me so far (a more in-depth timeline can be read here). Essentially eating put me into an insurmountable spiral of pain, to the point where I'd be curled up on the floor crying. Chicken was about the only thing I could eat without thinking I might pass out from pain. This, of course, resulted in losing about a pound a day. It was definitely a quick decline. I went through numerous scans and tests, trips to the clinic and ER, and came up with nothing. We thought for sure it was my gallbladder, but everything revealed that was not the case. I did a gallbladder flush anyhow, but I'm not sure if it did much of anything. Ultimately things calmed down enough to tolerate life by September after some adjustments to my supplements and maybe sheer willpower or prayer, who knows. I missed three weeks of work and gradually got myself back to full time for extension tax deadlines. The end of August we did make it up to our Duluth house and it was wonderful, so yay for ending the month on a good note. I could still rest as much as I needed, but had the highlight of a great view and time with family and friends. The next step from this debacle is looking into vascular compressions (it's been an ordeal getting in for a consult). I still am in pain and uncomfortable after I eat, but thankfully it's not usually as intense. So I've learned to eat small amounts to sustain getting in some nutrition and tolerate the consequences. I really want to avoid getting to the point where I'd need a feeding tube. Along the way I also discovered I have a pituitary adenoma (non-cancerous tumor on my pituitary gland), likely causing my prolactin levels to be high. The result of that is/can be lactation even though not breastfeeding, headaches, fatigue, anxiety, depression, and just overall hormonal imbalance issues. With other things going on it's hard to know how much of this it's actually affecting or not. I've been on the medication for 2 weeks now and the milk production is slowing and I've had fewer migraines thank goodness. Some days my mood seems a little more even keel, others it's still a roller coaster! I also discovered that I have 3 cavitations in my jaw from my wisdom teeth removal (20 years ago) not healing properly. With this you can deal with bacteria and infections residing in those pockets causing all kinds of issues. So right now there are three main things I'm working on. Navigating multiple health systems is its own part-time job! 

Pedaling around Canal Park in Duluth, MN

Ben and Otis chilling by the beach - we had one cool day while we were there

In the meantime, I'm trying the best I can. Life is full with my family, friends, work, events, etc. My family is doing wonderful and they are my source of joy. I also have such wonderful and supportive friends. I'll be honest, I haven't shared much of this with many people. I've been so overwhelmed by everything that most days I can't summon the courage to share. I struggle a lot with anxiety and depression taking hold of me. Most days I'm at the edge of tears and the slightest bit of vulnerability causes me to spill over. I do give myself space to do this in private, with Ben, and my trusty therapist.

As always, thank you for the love and support.

Ash

Upcoming Events if you feel inclined to cheer me on:

December 7th: 1st cavitation surgery

December 14th: Consult for Celiac Plexus Block (will explain more on this later)

December 28th: 2nd cavitation surgery