vascular compressions: pelvic congestion syndrome

I think it’s been established that things have been a bit chaotic in our household. Even with these challenges going on it’s so easy to see how blessed we still are! Our support system is incredible and not a day goes by that I don’t take a moment to look at my family/friends and see how fortunate I am. 

I've been taking life one hour at a time as of late. It's been nothing short of challenging. I can finally say that tax deadline has past. At least the real big one. There's still plenty of work to do but it doesn't feel quite as intense. Which just means I feel less pressure to suck it up and keep going. To be clear, this pressure only comes from myself. Most people don't know or understand how much I struggle each day. And that's fair, because I try to put on a good face. I don't want to be a sick person. Thankfully I do have people that just get it and see me and I don't have to explain a thing. It's no longer unusual to disappear to the quiet room to lie down or dim the lights for a migraine. I'm now just met with, "you okay? need a hug?". I might cry and then we tell a joke and move on with the day. This is my normal and I'm so thankful for my tribe that's going through the trenches with me each and every day. Because we can't go over it, can't go under it, we gotta go through it...

Deadline Day!

Migraine day!

If we jump back a few weeks where I left off in my last blog post... I had just returned from Oklahoma where I had my angiogram done. That Monday (3/25/24) I worked from home, because I had about negative ambition to get myself to do anything beyond sit at my desk chair in my room. It was also the start of the kid's spring break. My mom brought the boys back home and stayed to hang out with all the kids until I got done with work. I could tell mom was very run down at this point and was now sick with a virus herself. Ben arrived home early evening from his long drive, mom was able to go home, and we were back to our family unit of 5. Once Otis was in bed, Ben pulled me into the bathroom and shut the door. He looked incredibly somber and said, "I have melanoma". I think my brain possibly short circuited for a few moments. I was hoping for a passionate kiss or something and here we are with shit being piled on top of our shit sandwich. He jumped into explaining things and telling me about his appointment the next day and so on. I finally catch up and say, "oh, do you want me to come to your appointment with you?" This is an obvious yes, but I'm really having a hard time processing the information. I did of course take time to think, 'okay, I mean, they cut the mole out already, that's good. This should hopefully be straightforward and it's caught early and so on.' He also fills me in on the fact that he's known about this for 6 days now. I'm not mad about it, because I understand why he did it. I was and am just incredibly sad that life has thrown so much at us that my own husband has to set aside shitty news for a few days so we can get through another hard thing before he tells me more difficult news. Because he was absolutely right, it probably would have been too much for me. Our trip to Magnolia Market will always be remembered as the wonderful time Violet and I spent galavanting the property while we thought Ben was watching March Madness on his phone while sitting on a bench. But he was, in fact, researching melanoma. He chose to let me have that moment that day, where I wasn't a sick person for a few hours. And I love him for that (along with many other reasons of course).

The boys at my mom's house <3

I go to that appointment with him the next morning. I proceed to sit next to him with tears running down my face as the doctor talks. The doctor steps out for a bit and I lean to Ben and say, "Sorry, I'm a terrible emotional support person right now." Once we leave with action items I'm able to pull it together. Dealing with scheduling appts is my forte and that I can help with!

My cousin, Tammy, took the kids to Wow Zone for an
afternoon of fun during their Spring break week.

The week carries on and Ben is scheduled for surgery Monday, April 8th to clean up the margins and remove a lymph node. My arm continues to hurt, really bad. This annoys the crap out of me. Because I have to use it to type and use my mouse and so on. And of course it's on the underside so it's impossible to not bump it constantly.

Otis is sick again on Easter Sunday :(

Monday, April 1st, I had a follow-up with my endocrinologist. I had been taking cabergoline and checking my prolactin levels once a month. Even the lowest dose of cabergoline caused my prolactin to then go too low. She is having me stop the medication and do a blood check in three months. Then in 6 months we will do a repeat MRI and another follow-up visit. The cabergoline stopped the lactating. So hopefully it stays that way and the pituitary adenoma is a non-issue going forward.

Friday, April 5th, I finally had my venogram! My mom stayed at our house the night before so we could get on the road by 5:45am. By the time we get there I could feel a migraine coming on, I so badly wanted to drink some fluids! After we arrive they send me back to do an ultrasound of my legs first. It was discussed that with my leg pain we wanted to make sure there wasn’t something else going on with my veins (there wasn’t). The best part of this was the one-size-fits-all shorts she gave me to put on. Mom and I have a good laugh over this.

After that I get prepped for my venogram. I suit up in a green gown… my friends have told me this gown is a nice color on me. So that was my immediate thought when I saw it… so I obviously had to text them to share I got the green gown! The nurse gets the IV on the first try! Another win. Basically if we can do it in the crease of my left arm the chances are good! The doctor pops in to go over the plan… which is doing the venogram for diagnostic purposes. My ultrasound March 1st confirmed some pelvic congestion, but wasn’t bad. So he is hoping to just go in and check the left renal vein, my iliac vein, and take another look at the ovarian veins. If he sees anything that needs addressing he will be able to do so as insurance approved stenting and/or embolizing if necessary.

I’m wheeled off, with a pitstop for more warm blankets. Weee!! The pit crew is in the procedure room all ready to go. They give me sleepy drugs and have me turn my head to the left. I’m draped with a tarp that has a hole accessing the right side of my neck. I don’t feel much of anything initially. I can’t quite see the x-ray monitor which is disappointing. But I’m too out of it to actually talk and ask them to show me. Numerous times I hear, “Ashlee, you still awake?!”… I croak out a “yeah”. I’m told to take a small breath in and exhale. At certain points I can feel more things happening. I have no idea what exactly. Some at the site of my neck and some inside me. Time flies and I’m back in my post-op room. They bring mom back and I start coming out of it a bit… but what in the dumpster fire, I feel like hot trash. So I proceed to rest and move as little as possible. My neck and left shoulder hurts, movement feels like I’m being stabbed. And whyyy do my insides hurt so bad…

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