series of unfortunate and fortunate events. part two.
September 5, 2023
I made it back to work today for a few hours. And then I took a nap because I was exhausted and my body still hates eating.
September 7, 2023
I did the gallbladder flush, which consists of some body prep and drinking olive oil and grapefruit juice back and forth for 15 minutes. If it sounds bizarre that's because it is. Olive oil is not something anyone should just drink. That's my conclusion. It sticks with you for awhile. After this I just had to lay on my side on a heating pad and rest. Minimal stress all day if possible. The idea is that the mixture should help break up any gallstones and stimulate the gallbladder to release them.
The much better highlight, the kids started school!
September 8, 2023
I didn't see anything release and I don't feel any better. But I made it through another half day of work :) Also, my prolactin lab came back high, as I suspected. So we were able to coordinate my MRI to include imaging of the pituitary gland as well.
September 9, 2023
Otis said "Mama!" <3
September 15, 2023
I had my MRI done. Since there were two sets of imaging done it took quite awhile. Which meant I had to be very still in a very noisy machine for an extended period of time. They told me I did great! I doubt they'd ever tell anyone they didn't do great. haha
My MRI results were posted on my portal that evening. The brain angiogram looked good, just part of the circle of Willis artery was missing or couldn’t be seen. So thankfully I have a left side that’s working perfectly well. It wasn’t commented on, so I presume all is good. The pituitary MRI showed a very small nodule on the pituitary gland. So it’s possible that’s causing the excess prolactin production. Will have to ask my PCP about it.
September 21, 2023
My PCP messaged me and let me know I'll need to be referred to Endocrinology to talk more about the MRI and prolactin. I'm not sure why this didn't occur to me initially since I know how all this works, but for some reason this made things set in for me. Which then released a domino effect of emotions. It just felt like one more thing to deal with. I knew that likely it just meant taking a medication for a period of time based on the research I did, but if there were any other hormones affected that could change things. Just more unknown and another month wait to get in with an endocrinologist. Thankfully I had seen our one and only Mankato endocrinologist earlier in the year so I wasn't a new new patient. So I only had a one month wait versus several month wait. Or I just got lucky somehow that there was an opening, who knows.
September 26, 2023
Met with my primary care doctor and she agreed with me that I'd likely just start a medication. I asked if I could just start it before even having the appointment. She was going to reach out and ask. Can you tell I am to the point where I just want to move forward with things without having to wait and jump through hoops constantly. Overall, it was a good appointment though. We caught up on all the things.
September 30, 2023
Soccer life has commenced! 3 practices a week and a game every weekend. Theodore LOVES it and it's so fun to watch him play.
October 1, 2023
My mom came over for a visit since Ben was in the BWCA and we painted pumpkins with the kids!
October 3, 2023
Otis learned to clap!
October 7, 2023
My niece Ellen's birthday party! Ben took Theodore to his soccer game and I took Violet and Otis to the birthday party. Otis had SO much fun in the water.
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| I love his bond with grandpa! |
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| She is sometimes a bit jealous of Otis, but most of the time she just adores him! |
October 9, 2023
I called Mayo to check in on the vascular situation with my CT scan. She informed me that a letter was sent in the mail rejecting me as a patient. Well, that's cool. So I asked why and she said they didn't see anything. I don't believe them. I also love that it took over 5 weeks of back and forth to come to this conclusion. So I got off the phone and then called The Vascular Experts in Connecticut to get a second opinion. Their receptionist was quite helpful actually and took all my information and told me to send my CT scan over. It felt so straightforward, which was a strange experience for me. haha!
October 12, 2023
This morning I went to Sedation & Implant Dentistry in St. Paul to do my 3D cone beam scan to check for dental cavitations. It was super quick! Maybe took 10 minutes? They will get the results and do my consult November 2nd.
October 13, 2023
I don’t go out very often. Mostly because I have very little energy and never feel well. So I channel all of it into work and my family. If I could give up work for fun things I totally would! Tonight I went to a Mavericks hockey game with some friends… after a long week I had some doubts about how enjoyable it was going to be. But I was determined to have fun and I succeeded! I wish I could say I always get a boost of energy from having a cocktail but that is not true. I haven’t felt that much desire to move around since I don’t even know when. Did I dance around even though it was a hockey game? I sure did! Did I look a bit crazy?! I mean maybe, but who cares because I was living my best life (for a few hours) ;)
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| So lucky to have such amazing friends <3 |
October 16, 2023
Ben and I aren't able to spend lots of time together just the two of us or have many uninterrupted conversations. Ben built a spectacular treehouse for the kids years ago. It turns out it's actually for us to hide in.
October 20, 2023
My baby brother, Tyson, married his one true love, Megan! It was such a beautiful day. It was unseasonably warm and hit 70 degrees! Ben was the officiant and did fantastic. The venue was fabulous and the decor was so stunning.
I tried my best to soak up and enjoy all the moments even though I did not feel great. Glad I could dance a bit with my baby <3
October 22-25, 2023
Headed to Phoenix, Arizona for a work conference. I was incredibly nervous, but also very excited. I really enjoyed it! Helped that it was also a really nice hotel and I got some quiet time to myself. I snuck to the pool during one of my breaks on the last day. I couldn't be in Arizona and NOT go to the pool ;)
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| The food provided was SO good! And they had options for people with dietary restrictions. WIN! |
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| My largest pet peeve at restaurants is lack of GF desserts. They delivered! |
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| LOVE Arizona sunsets |
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| Early morning walk to see the sunrise before heading to the airport |
October 30, 2023
Today was just one of those days where I started out okay and then just hit wall, mentally and emotionally. Lots of crying happened at the end of the day.
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| Pumpkin decorating contest at work :) We partnered with a co-worker. How cute is this! |
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| October was PACKED with so many events. It's not shocking that I had a breaking point. |
October 31, 2023
Halloween! I dressed up as one of the Sanderson sisters with my co-worker. It was kind of fun to float around in my dress and cape ;) I did have to go to Mayo for a blood draw and got some stares, which I thought was kind of funny.
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| All my babies have been Winnie the Pooh when they were around 1. We elevated this year and got Violet and Theodore a costume too! Plus they were warm and cozy. |
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| The Sanderson sisters! |
November 2, 2023
Cavitation consult day! My mom drove up to St. Paul with me to be my second pair of ears. At this point I designated mom to be my cavitation co-pilot and Ben to be my vascular co-pilot to divvy things. And I just wanted to stop trying to do everything by myself. In terms of appointments I mean. I have cavitations in three of my four wisdom teeth sites (wisdom teeth were removed in 2003). The doctor filled us in on the process and what to expect. We didn't hesitate and just made the appointments before we left. My mom is incredibly generous and said she'd pay for the surgeries so I didn't let the financial piece hold me back from doing it. She recommended doing one side of the mouth at a time. I decided to do the two cavitations first and get the hard one out of the way! First surgery would be early December.
November 3, 2023
Fourth day in a row of attending some sort of an appointment, woohoo! Did my fancy Vitamin D lab and got my echocardiogram done.
Took first dose of Cabergoline.
November 4-5, 2023
I can't decide if I'm just feeling normal awfulness or if the medication has anything to do with it. All weekend I just felt this heavy weight on me and bone deep exhaustion. On top of that my gut was a mess. I'm rethinking my avoidance of a feeding tube. Maybe it would be easier. (this is crazy talk, but highlights how crummy things are)
On a brighter note, we had Theodore's birthday party. And by "we" I mean that Ben did literally everything. We initially had planned to take him to a MSU Men's soccer game, but it was cancelled. So Plan B involved Ben and Theodore planning lots of activities for 8 kids to do. They had a soccer shoot-out, paper airplane throwing contest, did science experiments - like Coke & Mentos, rubber bands around a watermelon, ate root beer floats, opened gifts, painted pumpkins, and had a bonfire with s'mores. I feel tired just typing that. But fun was had by all :)
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| Theodore's birthday party! |
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| Otis has started standing on his own and has been taking a few steps. I just love his hair in this pic! |
November 6, 2023
I just wanted to note that I woke up feeling a bit lighter today. Mood is better and my body doesn't feel as heavy. I made it until about noon before I wanted crawl into a ball under my desk. I call this a success! 'Twas a good day overall :)
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| Theodore and Otis love jamming on the piano together! |
November 9, 2023
It was not a good day. Started with stomach issues and neck/shoulder pain. I just couldn’t get myself to snap out of it, so I spent most of the day in bed sleeping off and on. I also made it to my therapy appointment. She did 7 point healing and it felt really good to just lay there and let it all go.
November 10, 2023
The Vascular Experts called! I could hardly believe it. I honestly had about 25 emotions flying at me as the gal was talking to me on the phone. And I knew as soon as I hung up the tears would flow. And so they did and Kerstyn was there to give me a big hug. It was a combination of relief and overwhelm and fear and gratefulness and so much more. I fill out some paperwork and talk with Dr. Hsu on Tuesday!
November 13, 2023
I’m not sure if it’s because life has been a lot or the journey to get to this point or what exactly, but anytime I remember my appointment is actually happening tomorrow I kind of want to vomit. Or that’s maybe just my normal gut issues. Either way I’m definitely having a lot of anxiety.
November 14, 2023
I felt pretty calm this morning, which was surprising to me. I had a full morning of meetings so I didn’t have time to think about my appointment. Ben came home so he could listen in on the call with me. I’ve been trying to be better about having a second set of ears with me at appointments. Dr. Hsu explained everything about what MALS is and asked me a million questions. You’d think this would be easy but sometimes questions trip me up and I feel like there’s supposed to be a right answer. But it’s not a quiz, it’s just me explaining my symptoms. Ultimately the conclusion was that I have the anatomy for MALS. My median arcuate ligament is pinching my celiac artery. I believe if I understood this correctly it's partially because the back of my diaphragm is hanging too low and pushing on it. This has also resulted in lots of nerve damage in that area which is causing all the pain signals. I haven't done any tests to see how much blood flow there is through that area, but if the blood flow is impacted due to the pinching that can also cause issues with digestion. I walked away from the call feeling okay. Maybe relieved in some ways, for the validation piece of it. I by no means want to have MALS or have to go through surgery. But I'm in so much pain and my life has been so impacted these past few months by this specific issue on top of all my other issues, that I just want there to be something that can fix it. Next step is for me to find a place in MN to do a celiac nerve block to see if that stops the pain.
November 16, 2023
I was able to schedule a video consult with an Interventional Radiologist through Midwest Radiology for December 14, 2023.
It was so beautiful outside today, sunny and in the 60s! So Ben and I went out to Williams Nature Park over lunch and took a walk.
November 17, 2023
Today was one of those days where I woke up and was just not okay. Everything just feels so hard. So I cried a few times, got a few hugs, and got through the day.
November 18, 2023
Otis is ONE! He's just so wonderful <3
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| A rare moment of Otis letting me cuddle with him. He's usually too busy! |
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| Shenanigans! |
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| Daycare birthday photo! |
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| 1st birthday cake made by THE Kara Karels <3 |
November 21, 2023
I’m on day 3 of feeling quite miserable. Take your hand, wrap it around your other arm and squeeze. Now hold it there and envision that pressure all over your body. That’s what it feels like. Along with some chills, MALS pain and nausea, and just an overall feeling of unwell. I made it about three hours at work yesterday, went home for lunch to lie down for a bit, and wasn’t able to get myself to go back. I hope it’s just some sort of bug my body is fighting off. 16 days until surgery #1!
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| The fam bought me a squishmallow. I think it's the biggest you can buy! lol! His name is Sawyer ;) |
November 23, 2023
Thanksgiving with the Suker family!
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| Why does she look so grown up!? |
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| Ben also snapped some ONE YEAR pics of Otis! |
November 24, 2023
Crushed it! I don't think I'll ever be able to adequately describe when I feel a moment of motivation and an ounce of energy. But today I got it. I somehow managed to time the meds and the caffeine together with my body and it was like "Let's do this!". This was fantastic as Ben was working and I was home with the three kids. We ventured to Hobby Lobby... I assured them there would only be one store visit. Being it was black Friday and I knew I was functioning on borrowed energy likely. It was a tad stressful and comical browsing Hobby Lobby with three children whilst it was incredibly busy. Thankfully Otis was just mesmerized. Then we made a stop at Caribou, because Violet is highly persuasive. Once I got home and Otis went down for nap I actually didn't nap while he did. I got the rest of the Christmas decorations situated so Ben could put the bins back in the attic. I could tell I was wearing down, but I had to finish! And I am SO proud of myself! I'll probably talk about this for at least a week.
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| All ready to for the Kiwanis Holiday Lights parade! |
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| Hobby Lobby adventure! |
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| They're hard to say no to. |
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| I love our house during the holidays! |
November 25, 2023
We ventured to Sioux Falls to have Thanksgiving with my family and to attend Tyson's art show at the Zoo!
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| Our little turkey! |
November 26, 2023
My body is determined to keep me feeling questionable aka terrible. For some reason default mode has become feeling like I have a fever with severe aches and chills. There’s not actually a fever though. And then on top of that my MALS pain continues to rage on after my eating attempts. Just when I think maybe I’ve made it, it’s like ha ha ha in your face, I’m still here!
November 30, 2023
It's one week out from dental cavitation surgery! And I'm SO excited for it. That's how you know how desperate a person is, they are looking forward to surgery. I'm trying not to think about what recovery might entail too much. This morning I had a lab done to check my prolactin to see how the cabergoline is doing. My migraines have decreased significantly and I've stopped lactating. So that's a win! I anticipate the levels will be back in the normal range and I'll just carry on with my current dose. I should know by early next week. Then I had a nutrient IV infusion at Between the Bridges to prep for surgery. I'm going to be honest... I thought I'd maybe feel like a burst of energy afterwards or just feel a bit better in general. Not so much. I actually got a headache and felt REALLY tired. Google tells me that this can happen. Then this afternoon I got a call from Oklahoma to schedule a consult with a vascular surgeon. This brought on a lot of emotions... it was overwhelming. I'm not sure why exactly. But I guess I had a similar reaction to the last surgeon consult I scheduled too. I decided last week that I wanted to get one more opinion. So this one is taking me to Oklahoma. We'll see what happens.
December 1, 2023
My prolactin lab came back and now it’s a tad too low. She is having me reduce my dose and only take once a week. I also got a call from Sedation and Implant Dentistry asking if I’d like to take an appointment slot on Monday for surgery. That was an absolute yes for me. I so badly just want to get this done and start the healing process.
December 2, 2023
I was able to lean into my extreme exhaustion today by taking not only one, but TWO naps. I did not want to get out of bed, but parenting is important ;)
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| Violet really wanted a date with her mama, so we ventured to Coffee Hag! Because, caffeine. |
December 4 - December 13, 2023
December 16 - December 18, 2023
Dr. Warren was a breath of fresh air. We had to wait quite awhile to see her as things were running behind. But as soon as she walked in the room she got right down to business. She had already read through everything I sent over so I didn't have to take time to recount my story. She took time to show us my CT scan and show us what she saw. Most radiologists don't know much about vascular compressions and what exactly to look for. And on my scan I can see how some of it may be missed if you don't know. It looks like gray blobs to me, so I'm impressed anyone can make something out of it. She noted how my left renal vein is being compressed by my superior mesenteric artery. And that same artery is also compressing my duodenum because I don't have adequate visceral fat there to help cushion it. This is likely due to years of malnourishment, which may or may not be from MALS (median arcuate ligament syndrome). The appointment was a whirlwind, but she knew what I should do next, which was more testing to see HOW compressed everything is and what needs to be done to fix it.
December 23-25, 2023
Christmas with family!
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| Suker Family |
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| Schultz Family |
December 28, 2023 - January 5, 2024
January 6, 2024
Violet's Birthday!
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| Morning presents with the fam! |
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| She had a sleepover with some friends and they had SO much fun! |
January 8, 2024
Violet asked me to have lunch with her at school for her birthday treat :) Today was the best day I've had since my second surgery. Just in a better mood, felt a little lighter. It was all very welcome! I even made it a full day in the office and got the kids to tumbling.
January 9, 2024
Celiac Plexus Block procedure. More to come on this later ...
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| "Let's do this!" |
Loved the motion picture of your life. Like the flicker of an old style film rolling and jumping from one scene to the next. 🥰
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