[Through The Land Of Hyster The Hyster Sisters Guide Downloads Torrent
Gildo Santiago
Hello, everyone and welcome to the Patients Have Power podcast! Our latest Patients Have Power episode is called "My heart is tipped over.", (You can subscribe to the podcast at Apple Podcasts, or listen to it with the media player above).
Through The Land Of Hyster The Hyster Sisters Guide Downloads Torrent
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Today, we have Ms. Molly Sarah with us. She is an incredible advocate living with a few different rare diseases. She is a brilliant writer and does quite a bit of writing on her website, Molly Sarah Writes. I want to let her talk to you a little bit about her journey today and then we'll dig into a conversation surrounding all of this, but she just has such a wonderful personality and I think we're going to have a lot of fun.
Lilly Stairs:I think you can, yeah! Why don't you give us the best - what I've been saying now is "elevator pitch" - but not 30 seconds, like five minutes of your journey, of what you've been through thus far as a patient and advocate.
Turns out the first time, they were wrong about that, I was growth hormone deficient. I took injections with growth hormones. I grew to be of average height, I'm 5'4", but kind of short. The pain went away for a while.
Again, it went away for little while, came back when I was in college. Doctor told me, "You know your back, whenever you're stressed out. You're a college student." This is a repeat event in my life of being told. I haven't had that it's all in my head, but it has been blamed on other things.
Molly Sarah:Right? I mean, of all of the things that I could have wanted to do with a life of back pain (unexplained back pain), I decided to play roller derby. So, there was that. I needed to check that off my bucket list.
So I was playing roller derby for a few months when I fell and dislocated my hip. The one time you'd think you could actually find a reason for being in pain (I mean, I fell). Logically, you would think that my hip dislocating would be the source of my pain.
Molly Sarah: Turns out that my hip never healed, it still hasn't healed, and this is almost four years on. My hip has never been the same. It was actually my mom suggested that I see a rheumatologist for all of this unexplained joint pain. And this is where it gets weird.
I didn't know what he got or what was going on, but he took one look at me, "Oh my God. I got one." He runs out of the room, I don't know what's going on, he comes back with literally, I counted, six of his colleagues. They're all looking at me, they're all poking and prodding, without my permission, mind you. And then he finally says,
Now, what even is that? My mom said that she'd read about it when I was younger about is it really growing pains, but she listened to the doctor and he told her it was growing pains, so she wasn't going to pursue it any further.
We're taught to trust doctors, which ties into, actually, patients have power. Second opinions are always great. Even a third opinion. I wish that I'd known that years ago because it could have saved me a lot of being in pain and all of that. But I'm here now, so I can advocate for it because I didn't know about it until recently.
Lilly Stairs:Well, I think that's really important, and I want to just take a step back here just for our listeners who aren't as familiar with Ehlers-Danlos and V.E.D.S. I think you're referring to it as VEDS, is that correct?
Lilly Stairs:Yeah, that makes a lot of sense. So can you explain to us what Ehlers-Danlos is, what type of symptoms that it gives you, and then talk a little bit about specifically your subtype (vascular).
Molly Sarah:Sure. There are lots of symptoms that are across pretty much all subtypes, but for me personally, it started with joint pain. Actually, vascular it's more... literally vascular. I'm trying to think of how to phrase this, but it's my heart.
My heart, actually, if you saw an echo of mine - I would love to show all of you what I saw on the screen - my heart is in the wrong place in my chest because EDS is hypermobile, and it's literally a connective tissue disease. Things stretch out, things break and snap, things like that.
I have bruises all over my skin, splits on my hand for no obvious reason, things like that. So it affects my heart in a way that my heart is tipped over in my chest, and doctors have a hard time with the stethoscope. I like to joke with doctors now that I'm dead because it takes them a while - Don't do that. Don't do that. Don't be like me - to find it in my chest because the connective tissue is so flimsy that it just kind of tipped over.
Molly Sarah:I like to freak out med students - again, don't do this - new med students that come in at my PCP's office. I tell them they can listen to my heart because I have mitral valve prolapse and it makes a very specific sound that med students seem to be fascinated with.
When they can't find it, they all freak out. And I'm like, "I'm sorry, I should have told you." I have a lot of humor when it comes to this because I've been dealing with it for almost five years- Oh, it's five years in March.
Lilly Stairs:That's really wonderful that you've been able to be somewhat lighthearted about it and bring some humor into the everyday, because I think that that's a really great coping mechanism for some patients and advocates.
So thank you for being so open and honest about that because I think sometimes we're always talking about chronic illness and we feel we need to be so serious - but we're people too. We're humans and we enjoy having fun and engaging in funny discussions sometimes, so thanks for sharing that.
Lilly Stairs:One other thing I wanted to touch on when you were sharing your journey - I just cannot believe that a physician said to you, "I've got one." How inappropriate for him or her to say that. I mean, were you concerned? Were you afraid? Had he explained to you? It sounds like he just ran out.
Molly Sarah:He did. He walked in the room, he looked at me- Now, I have to go back for a second to take two minutes to explain this because it sounds crazy. And it is crazy, but the thing is the vascular type of Ehlers-Danlos actually is the sister illness of Marfan syndrome. So vascular type is the only type of EDS as far as I know in talking to my doctors that actually has a "look".
Molly Sarah: It's called marfanoid habitus and, basically, vascular EDS and Marfan present the same way. So I looked a certain way, and when the rheumatologist walked in the room, he basically saw Marfan syndrom (which is also pretty rare to diagnose). He said he waited about 35 years to actually get an EDS case, so you can imagine his surprise that one was sitting in his office.
Molly Sarah:But I mean, that doesn't excuse his behavior - and this is one of the top-ranked rheumatologists in the country. I think he's one of the Top 50 or something, and he likes to brag about it. I mean, this is a really highly respected doctor that treated me this way.
Lilly Stairs:Well, and I think that's a really important point. That's something that I've personally experienced too, coming from Boston. Originally, we had so many incredible - the really top medical centers in the world. I've actually had very similar experiences with rheumatologists who had the worst bedside manner of anyone I've ever been to, and they would be considered some of the best rheumatologists in the world. But it was one of the worst appointments I'd ever been to.
Lilly Stairs:So there's a couple of different things that I want to dig into and I appreciate also. I know that you're really passionate about bringing awareness to the fact that vascular EDS - it's not a death sentence, and so I appreciate you talking about that.
Can you also tell us a little bit more about some of the experiences that you've been through since your diagnosis? I know you had just shared with me that you have had a hysterectomy. Can you tell us a little bit more about what that's like as a young 20-something, having to go through getting a hysterectomy?
Molly Sarah:Oh, yeah, of course. The whole thing was actually everyone's medical nightmare. And, again, to relate this back to the whole purpose of this podcast, patients have power, I did not feel last year that I had any power as a patient.
What happened initially was - I'm going to try to keep this concise - initially, I was told I had a very bad UTI which tends to happen. In vascular Ehlers-Danlos, we actually are prone to UTIs and things like that in our urinary tract. It's more autoimmune than the other types of EDS in a lot of ways. We have a bunch of different problems that can serve as autoimmune as opposed to other things, they're the migraines and stuff like that, the basic stuff.
So I was told that it was my regular monthly UTI, surprise, and that's why I was peeing blood. Turns out that first doctor had no idea what she was talking about. I went to the emergency room because when you pee blood, that's what you do. You take your butt to the emergency room.
Molly Sarah:So I did, and I sat there for five hours and they sent me home with antibiotics. Nothing got better. Fast forward to a week later, I'm still seeing blood and I'm still thinking it's from peeing - but it's not, as I later find out.
I take an Uber to the ER again and I tell them, look, you treated me last week. This is not getting any better. In fact, it's getting worse and it actually really hurts. So they put me in a bed in the hallway. They tell me,
I came to them in the middle of the night with my cervix in a cup. My cervix had fallen out in the toilet in the middle of the night. I went up to go pee and actually my mom had to get my cervix out of the toilet because I was a little bit busy screaming.
Molly Sarah:Yeah, my cervix fell out. So I actually was rushed into emergency surgery. Three days after this whole thing happened, the surgeon actually came out and told my mom that there was not much left for him to take out. My uterus - actually, he removed it - fell apart in his hands. That's connective tissue disease. He didn't have a whole, intact uterus to send to pathology.
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