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Showing posts with the label hypermobile Ehlers Danlos syndrome

vascular compressions: a day in the life

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 A month or so ago, Theodore was hanging out with me in the living room. And out of nowhere he asked why I had to have this rare health issue. Wanted to know how I got it and how common it is. I explained that I was just born this way. Then we searched to see what the internet said for how common it is. It said about 2 out of 100,000 people. This is referring to median arcuate ligament syndrome, which is when there is compression of the celiac artery and you have symptoms because of it. They think anywhere from 10-25% of people have the compression without symptoms. After I told him about the 2 out of 100,000 he immediately said, “So you could be the ONLY person in Mankato who has this!?” I had never thought about it that way, but he’s right, I could be. Though as we’ve witnessed with my journey, it’s ridiculously challenging to rule out all the things and get a diagnosis. So how many people struggle with MALS and have no idea?! Theodore was just so sincere in all his questions. He t
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vascular compressions: a day in the life

-
Image
 A month or so ago, Theodore was hanging out with me in the living room. And out of nowhere he asked why I had to have this rare health issue. Wanted to know how I got it and how common it is. I explained that I was just born this way. Then we searched to see what the internet said for how common it is. It said about 2 out of 100,000 people. This is referring to median arcuate ligament syndrome, which is when there is compression of the celiac artery and you have symptoms because of it. They think anywhere from 10-25% of people have the compression without symptoms. After I told him about the 2 out of 100,000 he immediately said, “So you could be the ONLY person in Mankato who has this!?” I had never thought about it that way, but he’s right, I could be. Though as we’ve witnessed with my journey, it’s ridiculously challenging to rule out all the things and get a diagnosis. So how many people struggle with MALS and have no idea?! Theodore was just so sincere in all his questions. He t
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vascular compressions: plot twist

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A few weeks ago I started writing a blog about this whole waiting game. It didn't get completed due to dealing with life, not feeling well, and time. Time is actually more a translation of energy for me in most cases. I might have an hour to spare, but I'm too exhausted or in pain to put my thoughts on a page. So then I thought, okay, I'll write a post when I get to announce my surgery date! I gave the go ahead to schedule surgery April 24, 2024. After five weeks they finally gave me a requested date. Which just means they have a date that works for the doctor and they send it to the hospital. The hospital then takes care of the insurance piece and getting prior authorization. But they don't submit for authorization until close to your surgery date because the authorization expires. This is what they told me. I've done a triangle of calling to the hospital, clinic, and insurance these past two months trying to understand this process. Each time I'd call I'd
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vascular compressions: post-embolization life

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What day is it? I've been a bit MIA lately, so my blog is a tad behind. I'm going to try and incorporate some dates so we can all follow along better... myself included! Venogram/Ovarian Vein Embolization 4/5/2024 (a Friday!): We left off here. I wrote two whole blog posts about it. I'm a bit long-winded. We can't miss a detail though ;) Part 1 Part 2 X-ray of dye in my right ovarian vein X-ray of dye in my left ovarian vein X-ray of ovarian coils that were placed Post-Embolization 4/6-4/7 (the weekend): My main thought was, 'oh my word I'm in so much pain'. I think it hit me harder because I just had not anticipated the procedure and was still trying to wrap my head around it. What it meant going forward. How long would the pain last. Would I feel better than before. What will Dr. Warren think. Things like that. There was absolutely nothing I could do though, so I tried to stay in the moment and not dwell on it. I did find some FB groups on pelvic congestio
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vascular compressions: pelvic congestion syndrome pt 2

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I'm slowing coming out of my anesthesia fog from my venogram. The doctor comes in and tells me, "It was worse than I thought... " He then explains some of what he's done. Something about about embolizing and coiling. I'm thinking to myself, 'Oh NO!' So I ask, "What about my renal vein?" He tells me it isn't compressed and my iliac vein looks good too. He's called away for a moment and I turn to look at mom, "What is he talking about, can you have him draw a picture?" I just keep thinking that I hope whatever he's done was the right move, because it probably can't be undone. This is a good time for us all to take a moment to wonder, "Why did Ashlee not know all the possibilities going into this?" And this is a great question. I asked myself the same thing. He said he hadn't planned on doing anything while in there and I just went with that. I didn't take time to dwell on 'What Ifs' and ask more q
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vascular compressions: pelvic congestion syndrome

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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 roo
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