Manage episode 285098001 series 2158728
Tara Parham, the daughter of a disabled USMCS Veteran, eighty-sixed her 6 figure income career in Government Healthcare and Lean Six Sigma, after falling ill with the first of 3 rare diseases that are associated with her dads exposure to Agent Orange, a dioxin used while he was serving in the Vietnam War. Her goal is to shed light on those who are struggling with the many debilitating conditions from Agent Orange and other Rare Diseases; to advocate for those who are struggling to find Help, their voice, and are unable to advocate for themselves.
s8e10- PodcastDx- Agent Orange
Lita T 00:10 Hello and welcome to another episode of podcast dx. The show that brings you interviews with people just like you, whose lives were forever changed by a medical diagnosis. I'm Lita.
Ron 00:22 I'm Ron
Jean 00:22 and I'm Jean Marie.
Lita T 00:23 Collectively, we're the hosts of podcast dx. Our guest today is Tara. She is the daughter of a disabled US Marine Corps veteran who had to leave her position in government health care after falling ill with the first of three rare diseases that are associated with her dad's exposure to Agent Orange. It's a dioxide,
Jean 00:48 dioxin
Lita T 00:50 used while he was serving in the Vietnam War. Her goal today is to shed light on those who are struggling with the many disabling or debilitating conditions from Agent Orange and other rare diseases, to advocate for those who are struggling to find help their voice and are unable to advocate for themselves.
Jean 01:12 Hi Tara. Hi, Tara,
Tara 01:14 Hi,
Ron 01:16 Tara to give our audience some background on Agent Orange. Birth defects are showing up in children of veterans who served in America's military during the Vietnam War. The mil, the military actually sprayed more than 20 million gallons of the powerful defoliant in Vietnam, Laos and Cambodia to deny the enemy food sources and cover 10s of 1000s of American military personnel handled, sprayed or were sprayed by the herbicide. The chemicals in Agent Orange are known to cause a variety of illnesses including several types of cancers, among other diseases. The list of illnesses tied to Agent Orange is posted on the Department of Veterans Affairs website, and they include and I may struggle with some of these
Lita T 02:09 good luck Ron.
Ron 02:12 Al amyloidosis. Chronic B cell leukemia,
Jean 02:18 leukemia,
Lita T 02:19 leukemia,
Ron 02:19 leukemia. Told you I was gonna struggle
Lita T 02:24 mmhhmm
Ron 02:24 Chloracne, Is that right?
Lita T 02:26 Well, we could try.
Jean 02:27 And actually I was just watching there's a Netflix series on now about spies. And one of the individuals who they attempt attempted to assassinate with dioxins has this and it's very, very it's a very visual type thing you can really you can definitely discern that. That's what that is.
Ron 02:48 Wow! There's also
Lita T 02:51 diabetes type 2
Ron 02:52 Yep. Thank you Hodgkin's disease, ischemic heart disease, multiple myeloma, also non Hodgkins lymphoma, Parkinson's disease, peripheral neuropathy, at least the early onset of it. Porphyria Cutanea Tarda. I hope I got that right. It also includes prostate cancer and other respiratory cancers, such as lung cancer, cancer of the larynx, trachea and bronchus. Also soft tissue sarcomas other than osteosarcoma, Chandrosarcoma Kaposi sarcoma, or mesothelioma. And a group of different types of cancers in the body tissues such as muscle fat, I'm sorry, muscle, fat, blood and lymph vessels, and also connective tissue. And it took decades for the Department of Veterans Affairs to admit that the powerful herbicide poisoned 1000s of their military members.
Jean 04:00 And that's right, Ron,
Tara 04:01 Yes
Jean 04:01 and the children of the men and women that served and were effected by Agent Orange have a possibility of being you know, like the children might be born with spina bifida that's quite common. And that's a birth defect that occurs while still in in utero, and where the spinal cord fails to close at the bottom. And then children of women that served in the same situation have a larger set of possible birth defects that the VA does recognize. And that's because women are born with the same number of eggs, you know, they they carry those with them their entire lives, whereas men are constantly producing new sperm.
Lita T 04:37 Right. And we are going to get to our guest in a minute.
Tara 04:40 I know
Lita T 04:40 I hate to put you off, but we're just trying to save you some of the background information here, Tara, According to...
Tara 04:48 No, I appreciate it.
Lita T 04:49 (laughter) That's okay. According to the VA that covered birth defects for children born to women who served in Vietnam and the Korean demilitarized zone. Include. Okay, now it's my turn.
Ron 05:02 Exactly
Lita T 05:03 Achondroplasia, cleft lip and cleft palate, congenital heart diseases. congenital talipes equinovarus Oh, that's called clubfoot. Okay, I should have just said clubfoot, esophageal and intestinal atresia, Hallerman-Streif or Steiff? stryfe Hallerman-Streiff syndrome, boy Jack's gonna have fun editing this one
Jean 05:30 Or Dom
Lita T 05:31 or Dominic, whoever gets lucky,
Ron 05:33 Dominic's shaking his head no.
Lita T 05:34 (laughter) Hip dysplasia, Hirschsprung's disease which is a congenital mega colon, hydrocephalus due to aqueductal stenosis. Hypose, hypospadias, hypospadias. We'll say hypospadias, imperforte anus, neural tube defects, Poland syndrome pyloric stenosis, syndactyly or fused digits. Oh, that's like webbed feet. Is that right? Okay. tracheoesophageal fistula? I did pretty good on that one, undescended testicle. Williams Syndrome,
Jean 06:24 and we laughed at the fact that we can't pronounce these things.
Lita T 06:27 Yeah, we're not laughing at the disease.
Ron 06:30 the sad part about is this agent orange causes all of this.
Lita T 06:33 Yeah,
Jean 06:33 Right, right
Lita T 06:34 Yeah.
Jean 06:34 And I mean, Tara, you must have become like an, you know, you have to know so much and learn so much. Because these are things that people normally
Lita T 06:44 normally don't even think about
Jean 06:45 haven't even heard.
Lita T 06:46 It's not in our everyday vocabulary. No. So, Tara, (laughter) back to you. Thank you for taking the time to speak with us today. We really appreciate it. Now, can you start our listeners out by telling us what conditions are you personally dealing with?
Tara 07:01 Yeah, well, thank you for having me. I'm really grateful to have this opportunity to speak about this. Because, as you just mentioned, all of those conditions that I'm gonna put in, quote, air quotes recognized as being caused by Agent Orange, there are a slew of other conditions. And along with medical research out there that support connections between Agent Orange and these conditions, although they're not identified as being recognized. I myself have just in the past three and a half years been diagnosed with three of those. The first is a vascular necrosis, which I have in both knees, both hips and both shoulders. A Vascular Necrosis is the the first that I was diagnosed with, which is technically called multifocal, because I have it all over. There are many citations out there that support the association between Agent Orange and a vascular necrosis. And the second diagnosis that I had was intracranial hypertension, which I actually caused me to go blind,
Lita T 08:17 Ohh!
Tara 08:17 completely blind, and I was never supposed to, I was never supposed to see again, ended up having to have a brain operation and a VP shunt, but that it's a central nervous system disorder that affects your your ventricles, your vessels, which is linked to the agent, orange dioxin similar to spinal bifida, Chiari, which there's literature out there supporting the connection to that as well.
Lita T 08:44 MMhhmm
Tara 08:44 And the third that I was diagnosed with last year was interstitial lung disease, which causes doctors to ask if I've been around birds. But it's not just me. My sister also gets it. And there is also a slew of research out there showing the connection between respiratory conditions, not just lung cancer, respiratory cancers that are related to Agent Orange. And as recently as July 21 2020. There was a research article on that by is on the VA website for lung diseases, saying that additional research needs to be done for the veteran. So if all this research still needs to be done for the veterans, there's still so much that has to happen just for their descendants, their offspring
Ron 09:41 Right,
Lita T 09:41 Right, right, because I've heard that it's also being passed on to the grandchildren. So it must be doing something
Tara 09:48 Yes
Lita T 09:48 in the genetic links, right?
Tara 09:50 Yes. Yes, it's multi generational, and it can lie dormant for years like mine didn't. It didn't show up until I was 40.
Ron 10:00 WOW!
Tara 10:00 yeah. And and my sister, my sister was actually born with webbed feet, which they recognized as one of the
Ron 10:09 conditions?
Tara 10:09 things that correct that can be passed on to descendants. That and she also has the same lung condition that I have. But so we both have it.
Lita T 10:18 Wow
Jean 10:19 and dioxins are also found in other areas. I mean, it's something that if you're, you know, say your your family wasn't exposed to Agent Orange, but you know, you should be aware of it,
Lita T 10:30 like landscapers, are you saying?
Jean 10:31 No, like on paper mills, Oh, there they are found in other areas in in industry. And this actually does kind of hit close to home because, um, Agent Orange was originally developed at the University of Illinois as a means to help grow soybeans. And it wasn't it used it
Lita T 10:38 as a chemical weapon
Jean 10:42 originally, very low doses, and then the military
Lita T 10:53 weaponized it basically.
Jean 10:54 Yeah, yeah
Lita T 10:55 Well thank you, Tara. I think our listeners have a better understanding of what we're going to be talking about now. Since we only discuss one one diagnosis per episode, we would like to discuss your battle with multifocal avascular necrosis, also known as AVN. Perhaps you're willing to come back on another episode and talk about the other problems individually? Would that be okay?
Tara 11:19 Absolutely.
Lita T 11:20 Great. So we could make this into like a mini series?
Jean 11:24 Yes Yes. Cuz I mean, it's, it's
Tara 11:26 absolutely.
Lita T 11:27 That would be really, really great.
Jean 11:28 Yeah Well, and yeah, we can kind of understand that when you when you volunteer for the military. You know, there's a lot of things that you're going to be exposed to that normal, civilians... Yeah.
Lita T 11:28 And I don't know if you're aware of, but Jean and I are both veterans. And we always support any veteran activity that's out there. Because it's also supporting us.
Jean 11:49 Actually we just, you know, we were just saying this morning that, you know, the vaccine for COVID is not mandatory, they can't really make it mandatory. However, in the military, it would be mandatory, because you're giving away your life for your country.
Tara 12:04 Yeah!
Lita T 12:04 However, does that mean you're giving away your children's lives, your grandchildren's lives, this is where this topic is going to be important.
Jean 12:12 And there is there is the onus on them to keep their personal safe.
Lita T 12:16 Yeah.
Jean 12:16 And whenever possible, prevent, you know, disease and illness
Lita T 12:20 Right
Jean 12:20 that kind of situation,
Lita T 12:21 right
Tara 12:22 Yep. I completely agree. And oftentimes, you know, the military families, the sacrifices that they make when their loved ones are off serving, or the sacrifices, in this case, their health. So I completely agree.
Lita T 12:39 Well, yeah, we never would have expected this type of a reaction based on Agent Orange, but now we're learning
Jean 12:47 Yeah. And
Tara 12:48 I know,
Jean 12:49 Tara, can you tell us? What is AVN? And which bones? You said that you have it? It's multi
Lita T 12:55 shoulders?
Jean 12:56 Yeah. Shoulders in everything? Can you tell us which exact which joints are affected in your body?
Lita T 13:01 And what is it
Jean 13:01 in? What is it? Yeah,
Tara 13:04 sure. Well, avascular necrosis is It's the result of reduction of the blood flows to the bone. I, I have it in both knees, both hips, both shoulders, which basically means my bones didn't get enough of the blood, which caused them to start to die. And once the bones start to die, they don't just regenerate themselves. Now, here's an interesting fact. I was diagnosed with this three and a half years ago, my dad, the veter... the Vietnam veteran was just diagnosed with that three months ago. And
Jean 13:41 Oh my gosh,
Tara 13:42 and there's multiple, like I said, there's multiple citations out there of so many other veterans and their descendants, who have also been diagnosed with avascular necrosis. But what it does is as the bone dies, it brings the entire joint with it. So oftentimes, it's missed. It's not diagnosed until it's until at a later stage, which makes it a lot more complex. And it's very hard to find.
Lita T 14:14 Does it start out? Yeah, the symptoms as they start out, is it does it feel like a arthritic type of a feeling or how did the symptoms start with you?
Tara 14:24 Well, what started interestingly, I woke up one morning and I thought that I had twisted my knee and my sleep. So it felt like a torn ligament in my knee. And I ended up going to the emergency room and I was misdiagnosed with bone cancer. Because
Ron 14:44 Oh Wow,
Tara 14:45 it Yeah, it looks like bone like white specks all in my bones.
Jean 14:52 Mhhmm
Lita T 14:52 Ohhh!
Tara 14:52 And that's the dead bone marks. They're called bone infarct. So I have that as well as, as the death on the end of the bone, which is the a vascular necrosis too. So that was the initial diagnosis. And I, it took me all over the country, I ended up going to Mayo Clinic in Rochester, Minnesota to trying to find a diagnosis and help, which ultimately landed me in New York City at New York Presbyterian, where I found a doctor to do a bilateral hip procedure on me to try and slow down the progression.
Lita T 15:31 Okay
Tara 15:32 So, and maybe I should touch more on, I guess, how do you want me to touch more on the connection between avascular necrosis and Agent Orange?
Lita T 15:42 Sure, sure.
Tara 15:45 Okay, hold on, let me get let me get there, my notes...
Lita T 15:49 she that's what Jean was saying. You have to become a expert.
Jean 15:53 Subject matter expert I think there should be honorary doctorates.
Lita T 15:56 Yes.
Jean 15:57 For patients like you. Yeah
Tara 15:59 Yeah, you have to you have to be your own, like advocate. And that's the biggest challenge especially says it's considered rare. There's not a lot of doctors who actually have the knowledge that you need. So you get Misdiagnosed, and you get misinformation, which causes you to lose time, and your options for treatment diminish.
Ron 16:25 Absolutely
Tara 16:25 So hold on one second. Sorry.
Jean 16:29 And I think Mayo Clinic is very interesting in Rochester, Minnesota, because the weather gets so cold there. I like to call it mole city. I don't know if they would agree with me calling it mole city
Lita T 16:39 (laughter) the tunnel.
Jean 16:39 But there's tunnels underground that connect the hospital to like the hotels, the hospital to the grocery store, to the library. So you don't have to go out there. freezing cold
Lita T 16:49 It's very nice. It's very nice
Jean 16:50 It's unique. It's it's kind of fun.
Lita T 16:52 Right?
Jean 16:53 And there's little shops all along the route.
Lita T 16:55 Yes.
Tara 16:55 Okay. Here we are. So the connection with the a vascular necrosis, and Agent Orange. So Avascular Necrosis, like I said, it's a result of the reduction of the blood flow to the bone. And Agent Orange has an adverse effect on blood vessels. So there's medical literature, literature that support Agent Orange, and the dioxin is capable of lying dormant and the effects that it has on the blood vessels. So it's actually the result? Yeah, hold on one second.
Lita T 17:32 I know I read the word stenosis and a couple of the different results.
Tara 17:37 By patients?
Lita T 17:38 Right. So stenosis is is reducing in size, so possibly, the blood vessel size is reduced at the at the bone. Could that be part of it?
Tara 17:49 Yeah. It's because it's not getting because of that the blood is not flowing the way that it needs to.
Lita T 17:55 Right.
Jean 17:56 And I guess most people don't think of their bones as first of all even needing a blood source.
Lita T 18:00 Yeah, yeah
Jean 18:01 but you don't realize that the osteocytes and, and everything inside your bone that you know that there's constant growth in bone and that it's still...
Tara 18:07 I know.
Jean 18:08 Yeah, because you think it's like set in stone. But really, it's, you know, part of your living
Lita T 18:14 body,
Jean 18:14 it's part of your body that's, you know, it's constantly
Lita T 18:16 most people don't think about it
Jean 18:17 regenerating, yeah.
Lita T 18:17 Right, right
Tara 18:19 It is. And a lot of people also kind of confused a vascular necrosis, which is also called osteonecrosis, but they confuse it with osteoporosis.
Lita T 18:30 Right, right
Tara 18:32 Like,
Jean 18:32 ohhhh,
Tara 18:32 Oh, they're like, you have
Ron 18:34 brittle bones?
Tara 18:34 osteoporosis. I'm like, it's not osteoporosis.
Lita T 18:37 No, no
Tara 18:39 It's osteonecrosis. And it's completely different. I went through that, initially, to once I found out that it was the a vascular necrosis, it was very challenging to explain to people actually, what it was, who had assumed that it was osteoperosis,
Ron 18:40 Right
Lita T 18:40 Different
Ron 18:40 Right, right you know, as we're talking, I just, it reminds me and this is going way back, when I was in college, I had done a paper on the banning of chemicals and Agent Orange.
Jean 19:14 Mhhmm
Ron 19:14 It was done like in the mid 70s, or something like that, because they knew it was bad. They just didn't know how bad
Jean 19:22 Mhhmm
Lita T 19:22 Oh Wow.
Ron 19:22 And this is where the stuff that we're talking about now is the result of all the research from that but way back in the 80s when I did this paper, they knew that this stuff was bad and that's why they said no more of these chemicals.
Jean 19:39 Well, it kind of reminds me of lead in fuel.
Ron 19:41 Mhhmm
Jean 19:42 And you know, like to prove that it was perfectly fine, which it's not the someone actually dipped their hands into it, and then later on, developed all sorts of cancers in both arms. But you know, like we I guess it takes time and research and, you know, you have to think about the effects down the road.
Ron 20:00 The long term Absolutely.
Jean 20:01 And it's not. Yeah, it's a challenge,
Lita T 20:03 right?
Tara 20:04 Yeah. And I remember reading somewhere that the amount of chemical that was used over there covered the span of I think it was like Kentucky and another state combined. And it was actually the the combination of the chemicals in Agent Orange. The thing is tcdd tetrachloride benzodioxine, dioxin tcdd. It's the chemical group of compounds named dioxins. And that's what makes Agent Orange as notorious as it is. And it's actually considered the most toxic of all dioxins, which is saying a lot, because dioxins are notoriously toxic. So, yeah, it's, um, I don't know, if you guys watched Chernobyl, that show?
Jean 21:01 I haven't seen that one yet. It's on my list.
Tara 21:03 Oh, I'm wondering how come they haven't done something like this for Agent Orange?
Jean 21:08 That's interesting
Tara 21:09 I'm like, yeah,
Jean 21:10 yeah. And I've been to see, oh, what has it done to the population?
Lita T 21:13 in Vietnam?
Jean 21:14 Yeah, in Vietnam? Because, um, you know, it's a long lasting chemical. And it's, yeah, it's got to have long term effects.
Lita T 21:22 Right.
Jean 21:22 Yeah. And then it's also in the environment at large.
Tara 21:25 Yep. And there is actually I've read a lot of things about the effects of the what's happening in Vietnam because of this. It's still being in the soil, so...
Jean 21:37 And, and there's probably, you know, if your going to have does have research and information, that's probably a good source as well, because they have a probably a greater population from the exposure. And actually, I think that takes us to Ron's question...
Ron 21:50 exactly. Can you tell us how common is a vascular necrosis? And actually, how is it treated?
Tara 22:00 Sure, so a vascular necrosis is probably anywhere from 10 to 20,000 people a year are diagnosed with it. So in order to be considered a rare disease, it's 200,000 or less avascular necrosis is 10, to 20,000.
Jean 22:20 Okay
Tara 22:20 So to treat a vascular necrosis and I need to give a plug here, because a lot of my information, Dr. Michael Mont, at Lenox Hill, who has, I was scheduled to have surgery on both knees, both hips in both shoulders in September of this time here, but due to COVID, and all of that, a couple of other mishaps, I actually kind of got sick with my lungs, too. We're postponing it, but he is phenomenal. He is a avascular necrosis guru, let me say that. So a lot of what I am speaking to is from literature that I've read that he wrote and talks about. So as far as treatments go for a vascular necrosis. As I mentioned earlier, a lot of people don't get a diagnosis until later in stage three, to give a little background on this, there is different staging, I guess, models that are used, there's ARCAT, then if you use the ARCAT, there's ARCO there's four stages, the first two stages are only identifiable on an MRI. So most people aren't going to be if you go to the doctor and you have knee pain or something they're not they're going to do an X ray. And when they don't see anything, it's like I don't, you're fine. Most, a lot of times, you don't go for an MRI for multiple reasons. So you don't get diagnosed until the pain progressed, and it gets really bad. Well, it's during those first two stages, where you have the less invasive procedures that are options that could help prolong you, possibly your bone completely dying and needing total replacements and it's becoming mobility issues, as well. So Another interesting fact here, too, and I'm kind of all over the board, but you know,
Lita T 24:29 yeah, you know, it turns out to be like a spider web, you know, one thing leads to another but go ahead and take your time.
Tara 24:35 I know avascular necrosis, there are a couple kind of well known people that had it A-Rod had it in his shoulder, Mike Napoli. Oh, the Red Sox play for the Red Sox, but theirs were caught. It was caught really early because they had to go through rigorous physical. So they had really high success. But I can't stress the importance of especially If somebody has history of Agent Orange, and they're having hip pain or something of that nature and their knees, hips or shoulders or something, especially if they have underlying health issues that prompts them to need prednisone or steroids, cause that contributes to that. It's like a perfect storm,
Lita T 25:24 okay
Tara 25:24 with the agent orange to cause a vascular necrosis. So did I answer your question?,
Lita T 25:32 Yeah that makes sense. That makes sense. Right?
Tara 25:35 I didn't finish answering the question though,
Lita T 25:37 no, that's okay. But at least that gives some background. Right. Right.
Tara 25:41 Okay,
Jean 25:42 well, yeah. And I think, you know, if you go to, you know, your orthopedist, and I don't think you know, is it typical for them to ask you? So did your parents, you know, serve in Vietnam? Are they exposed Agent Orange, it's, if it's not on their intake information, you really do have to advocate for yourself.
Lita T 25:58 Right? So the treatments again, the the initial treatments are, are what?
Tara 26:06 Okay, there you go. See, I didn't even answer it.
Ron 26:09 (Laughter)
Tara 26:09 So there's a there's, there's quite a few different treatments for the stage. And it's a little bit controversial, too, because, because it's rare, and most people don't get diagnosed until stage three and four. That means that there's not a lot of people to actually do tests that are trials on
Lita T 26:35 Oh Okay
Tara 26:35 stage one and two, or phase, the earlier stages. But very popular and somewhat controversial, depending on who you talk to is a core decompression, where they use bone marrow efforts that stem cells. So what accordi compression is, is they take and drill holes into your bone. And they inject stem cells into the bone marrow in hopes of regenerating the bone.
Lita T 27:10 Would they be your own stem cells?
Tara 27:12 Yes
Lita T 27:13 Okay?
Tara 27:13 Yeah, yes. But I also have for earlier stages. Do they also do PRP for protein rich? The
Lita T 27:21 plasma
Tara 27:22 stem cells?
Lita T 27:23 Okay. Okay.
Tara 27:25 But as far as treatment for the later stages, and that so.... So why I said it was controversial is because some orthopedist will say that, if you have a core decompression, you're kind of wasting your time, because it might buy you a little time, but you're still ultimately going, it's still going to collapse in the long run. And you're still going to have to go through all of the other things. So why even do the core de-compression?
Lita T 27:58 So it's just it's just a temporary
Jean 28:01 stop gap.
Lita T 28:01 A stop gap Yeah.
Ron 28:03 How much time?
Jean 28:04 Yeah,
Tara 28:06 it varies. And it's not always, that's not always the case, I had the bilateral hip core decompression in January of 2018. And I mean, I had tremendous relief after I did, and so far, like, it's, it hasn't gotten to the point to where I would need like to have it again. Like the pain hasn't gotten to that point to where it was before I had that surgery. So it's but there's other people who have had success and haven't had to go on and have any further surgery. So it's, it's not a, everyone will will have to it's there might be some that do and some that don't. And so the some that that do ultimately have to go on and have it that causes them to say that not to have it I don't know. So it is controversial.
Lita T 29:05 Okay
Tara 29:06 If you ask anybody, you'll get mixed reviews on whether you should or shouldn't. But the the guru, Dr. Michael Mont will tell you yes. To do the core compression, and I'm right there with him.
Lita T 29:18 Okay.
Tara 29:19 A majority of the time, I guess it depends there are things that so so let me just kind of say this. There's it depends on how much of the articular surface though, is covered with it has dead bones. Like if there's 75% or more, that has dead bone or if it's less light, so there's so many different, "if that, then that"
Lita T 29:47 Right, right.
Tara 29:48 And so
Lita T 29:48 like with cancer, you know, they treat cancer based on how much progression there is, are they going to use radio radiation or chemo? So I'm sure that they base it based on like, you're saying how bad it has progressed, right?
Tara 30:02 Correct, correct? Yeah. But that's for the first on the stage one and stage two, stage three and four get more complex.
Jean 30:14 Okay
Tara 30:14 So you have a variety of different options depending on, like I said, how much dead bone there is, as well as where it's at, where the dead bone is at. I have dead bone. It's 75% on one side, 85% on the other, my hip, and my knees are actually stage three. And my, my, my right, left shoulder is stage three, my right is stage two. And what that means is that some of the more less, the less invasive procedures, maybe don't have a high success possibility. It doesn't mean that it wouldn't possibly work, shall I say? Does that make sense?
Jean 31:04 It does, but is is like a replacement of the joint possibility.
Tara 31:15 Is the what I'm sorry,
Jean 31:16 can can they replace the joints?
Tara 31:19 Yes. But you wouldn't do that until stage later? Well, it depends on how much pain you're having to and a lot of it is derived by it by that. But yes, replacing it is an option. So and let me just explain this. This is the best explanation that somebody gave me on how to explain a vascular necrosis. So a vascular, a lot of people think that a vascular necrosis is like your joint. Something happened because you get a joint replacement. But what's happening is picture like whenever they lay of road, paver road, they lay sand down first and then they lay asphalt on top of it. But as you get a pothole, what happens is that sand settles and as the sand settles, then it pulls that asphalt down. So that's the same thing that's happening with the bone as the bone is dying because that's what a vascular necrosis is, is the bone dying as the dying is pulling down and that's what pulls your joint down and all of that, and it pulls all your ligaments and cartilage down and that's why you had to have all of it replaced.
Jean 32:35 So it's like sinkholes in the bone. Okay.
Tara 32:38 Yeah. Because your bones they're dying and they're, they're collapsing. And so as it does, it's taking everything with it.
Lita T 32:45 It's not just the not just the bone at the joint itself, but could it occur anywhere along the bone?
Tara 32:55 Yes, I I actually have it that called bone infarct, I have a vascular necrosis at the ends of my bones. And then I have bone infarct, which is dead bone patches throughout the long parts of my bones to which is where a lot of the the cancer that's where the cancer misdiagnosis came because it looks like that it shows up white in the images.
Lita T 33:25 Okay,
Tara 33:26 but yes,
Lita T 33:27 wow,
Jean 33:28 yeah,
Tara 33:28 for stage three and four, they have multiple different options, like there's an OATS procedure, a vascular graft procedure, ultimately, yes, a total replacement would be, I guess, that I want to say worst case scenario, but before the meet at that age, is a replacement for your hip would only last 10 years.
Jean 33:55 Okay, so they try to hold off.
Tara 33:56 Now it's actually lasting longer. Sometimes I think it's different if you have a vascular necrosis because the bones especially if they continue to kind of die after you've had the replacement,
Jean 34:09 right? Like after the bone isn't.
Lita T 34:12 Right.
Jean 34:13 Okay. I was just gonna say this, the shaft of the bone is supporting that joint. And so eventually, like, you'd have to place the shaft and the joint itself.
Lita T 34:20 Right So
Jean 34:21 and you're
Lita T 34:22 Why can't they get to the point where they're actually just solving the cause
Jean 34:27 the, stopping the necrosis.
Lita T 34:28 Right So in other words, like,
Jean 34:30 right,
Lita T 34:30 feeding the bone with the blood
Jean 34:32 Right,
Lita T 34:33 they can't. They can't come up with something where they can actually
Jean 34:36 I'm sure somebody's researching it somewhere. yeah.
Lita T 34:38 yeah,
Ron 34:38 Yep
Lita T 34:40 Wow.
Tara 34:40 Yeah. No,
Lita T 34:41 sorry.
Tara 34:41 Yeah.
Lita T 34:42 Yeah. Are they? I hate to interrupt you, Tara. But are there are there things that you could do to relieve the symptoms or improve your quality of life as you're going through this, you know, like as a person, not medical,
Jean 34:58 as an individual
Lita T 34:58 as an individual thank you
Jean 35:00 No I think, I think we do want medical.
Lita T 35:02 Okay. Alright
Tara 35:02 Yeah. Well, I can tell you. I can tell you from research that I did as far as exercise goes, low impacts. aquatics is really good.
Lita T 35:15 Okay,
Tara 35:15 yoga. Another good thing that I found actually has been tremendous for me. Is is keto.
Lita T 35:22 What is keto?
Tara 35:25 What I eat.
Lita T 35:26 Oh, I'm sorry. Okay. I thought it was a new. I thought it was like a karate. (laughter).
Jean 35:32 Okay, okay, stop.
Lita T 35:35 I'm sorry.
Tara 35:36 No. Keto. So one of the things of one of the challenges is, you know, with your bones, whenever you have a vascular necrosis, it makes it really challenging to be able to work out and get exercise or to go on a hike or things of that nature. Because it's kind of like a tire your bones are, the more you drive, the more your tire wears down. And so with avascular necrosis, it's the more that you walk, the more the bone collapses.
Lita T 36:05 Sure, sure. Right.
Tara 36:08 And so previous literature, I'd probably have to say and there might be some orthopedics that still recommend it, although I wouldn't. That say non weight bearing, like Don't, don't walk, try and limit your, your walking and as much as possible, because that will prolong the collapse. But what I found changing my eating too has allowed me to drop 36 pounds last year. And
Jean 36:37 congratulations,
Tara 36:38 when I wasn't able to work out and do those things that I used to love to do, like running. You know,
Jean 36:47 do you still run in your sleep in your dreams? Is that just me? .
Tara 36:52 You know what I do sometimes from from scary PTSD doctors that I've had from my experiences, but yeah, yes, I'm running.
Lita T 37:02 Okay. I'm sorry. Is it my turn?
Jean 37:05 Yeah, it's your turn
Lita T 37:06 Oh okay (laughter)
Jean 37:07 go fish.
Ron 37:07 Yeah.
Lita T 37:08 What? Tara, what role have your family and friends played in your health care journey?
Jean 37:13 Yeah. Especially your sister. Um,
Tara 37:17 okay. So, my family has been tremendous. Um, my dad and my mom have been my rock. I don't, I would not have been able to make it without them, which I'm not going to go into, like, my past or anything. But it's, it's different from how I grew up. You know, my dad was fighting his demons with the war. But now, he's, he's my rock. Luckily, with COVID because he was in a war veterans home for the past 17 years. And then COVID happened. And I found out that they weren't allowing their workers to wear masks. And so I had him. Oh, yeah. Yep.
Lita T 38:02 Oh!
Ron 38:02 What? Wow.
Tara 38:05 in April. Yeah, I have that recorded. But anyway, um,
Lita T 38:10 what state are you in? Oh, what state are you in?
Tara 38:13 I'm in Louisiana, Louisiana right now. So, um, I had him discharged. And so he's been able to be here with me. Although it's been extremely challenging with my stuff, but we've been able to support each other.
Lita T 38:31 Support each other Right.
Jean 38:32 And it's nice to meet your parents again, as adults,
Lita T 38:36 Yes
Jean 38:36 you know, to get to know them again. As an adult.
Tara 38:39 Yeah, exactly. Yes. And so it's been, um, my family has been amazing. is I don't even know how to say this and dance around it. I probably should have prepared better for that question.
Jean 38:57 You could leave in skip it, you can skip it
Tara 39:00 Okay,
Lita T 39:00 Whatever is comfortable for you. And if you want us to edit this out, we could also edit that part out
Jean 39:05 sure.
Tara 39:05 Okay, well, let me just say this. I fell into probably one of the darkest places of my life that I've ever been in. I am honestly lucky to be alive. There were days that I didn't know if I would make it if it wasn't my health, bringing me to the brink. My physical health, it was my mental health. And so every single relationship in my life was affected. I'm currently where we stand. My mom and my dad are my support system. And I'm rebuilding everything else.
Jean 39:44 Okay.
Lita T 39:45 Okay.
Ron 39:45 Gotcha
Lita T 39:46 All right.
Jean 39:47 Yeah. And I talk about mental health and physical health definitely go hand in hand.
Lita T 39:51 Yes, for sure. Definitely.
Tara 39:53 Absolutely. And when you're fighting for your life, you don't have like a lot of the energy to use On those relationships, so work on those.
Lita T 40:03 We understand that
Tara 40:03 And so everything is affected, you know,
Lita T 40:06 we understand that, yeah.
Jean 40:07 And you're in your friends and family have to be very understanding you're not able to do the things you used to do. And they really do have to make an effort.
Lita T 40:14 Right? Right.
Tara 40:15 Right
Lita T 40:15 And some people just can't really put themselves in the shoes of another person that has a chronic illness.
Tara 40:23 Right Yes
Lita T 40:24 And it's difficult. And, you might have to just excuse them and say, well, it's just not within their Yeah. purview
Jean 40:33 Purview?.
Tara 40:33 Yeah, wheelhouse
Lita T 40:35 right. Right. Right.
Ron 40:36 Look, this isn't really part of the script. But I'm just curious in you don't have to answer if you don't want to. Have you been able to see someone or talk to a therapist? Or?
Tara 40:47 Oh I have a yes. Yes,
Ron 40:50 Okay
Tara 40:50 I have. I've had a therapist for probably, like 10 years. Um, who? I call her my life coach, actually.
Jean 40:59 Sure. Sure.
Ron 41:00 Right
Tara 41:00 She's Wonderful.
Lita T 41:01 Yeah. Anybody with a chronic illness? It's causing pain on a non stop basis, I think, personally, should consider a therapist, Right I know,
Ron 41:11 but people look, view it differently. That's my opinion, But people dance around the question
Tara 41:11 Absolutely
Lita T 41:17 but personally, Yeah, yeah. My opinion is that it's needed.
Jean 41:20 Yeah.
Tara 41:20 Yeah, they're, they're such that there is still a stigma, in many ways about therapy and mental health. But honestly, there isn't, even if you don't think that you have a mental health, you know, reason to seek help. We all have things that we could improve on,
Lita T 41:39 Sure
Ron 41:39 Certainly
and why, you know, why wouldn't we want to?
Lita T 41:43 Right
Tara 41:43 That's exactly what a therapist would help you do? You know? So that's just my thoughts.
Jean 41:49 Oh absolutely
Ron 41:50 Some people have that thought of, these are my feelings I hate for anybody else to know what I'm feeling. I'll just deal with it internally.
Tara 41:59 Yeah.
Ron 41:59 And, you know, again, I mean, people look at it, people view it, people process it differently. I'm in total agreement with what Lita and Jean Marie and what you're saying about, it's great to talk with someone. But again, because of the stigma and all that a lot of times there's people out there that say, I don't want anybody,
Lita T 42:19 right,
Ron 42:20 know what's going on,
Jean 42:21 But it is coming into play in more. For example, like with organ transplant, getting counseling is not an option.
Ron 42:31 Right
Jean 42:31 It's a requirement,
Ron 42:32 right?
Jean 42:33 And because they realize that you really you, you need assistance, and you need some help.
Ron 42:37 Right
Jean 42:37 And it's a big deal. And I think the more and more we integrate health and take it in is part of the whole health package, the better it is for everyone.
Lita T 42:47 Right.
Jean 42:47 And this way it reduces that stigma
Lita T 42:48 better. If we would have started that way back when medicine started,
Jean 42:52 right,
Lita T 42:53 and said, mental health and physical health are hand in hand. And if you go to a doctor, and you're being seen for something that's chronic, I mean, if it's something that's that's short lived, and the doctor fixes you, there's probably but if it's chronic, I think that you should automatically say, well, because of this chronic illness, you automatically, you know, should go to
Jean 43:14 it should be included,
Lita T 43:14 right? It should be included.
Tara 43:16 Yep. No, I was just gonna say I think there needs to be like some type of chronic illness case manager, care manager, and whenever somebody is diagnosed, that they're referred to that person, and there's information that is given to them based especially based off of that condition, and it includes all of what you're saying. Absolutely
Lita T 43:34 right, right
Tara 43:35 because there is a huge gap, in many ways on in chronic illness, especially rare disease like that. I mean, it takes a good year for somebody just to get their bearings for any condition,
Lita T 43:52 right to process it
Tara 43:53 You want to make it a rare, a rare disease, and then that it adds to it because there's only a handful of people who actually have the knowledge that you need in order to find the treatment that you need. And oftentimes you have to travel extensively. I've had to travel across the country and figure out financially how you were going to afford it. I've had to get extremely creative. I found a lot of my doctors based off of research articles that I've read, because there wasn't actually an organization for my condition. So it there's so much that needs to be done in this this arena. But all of what you're saying would be great, too.
Lita T 44:37 Well, that leads me to my next question. Tara, what is the best advice that you've received for coping with a rare disease and what advice would you give to somebody recently diagnosed with a rare disease?
Tara 44:52 The best advice that I received was you have to be kind to yourself and take one day at a time and I know that That really, it really sounds cliche, because you hear, you know, one day at a time, but you get so exhausted, trying to just trying to find the most simplest thing. And all you want to do is like, just find the answers. And you can't even find an answer. That won't even get on people who are misdiagnosed. But it's really easy to get discouraged, and you beat yourself up over things. So I think that that was the best advice that I received for coping, and that to surround yourself with people who will help you see a side of you that you can't see,
Lita T 45:43 like to bring out the positive from you.
Tara 45:45 Yeah, well, that will remind you of the good in you because you're going to be struggling really hard. You're not going to feel like that person at all.
Lita T 45:54 Right. Good advice.
Ron 45:56 Yeah absolutely. Tara, how can our listeners learn more about you? And also about AVN? And do you have any, any social media accounts out there that you want to share with us?
Tara 46:11 Absolutely. Um, can I go back and answer the rest of the rest of that question though?
Lita T 46:17 Oh sure, go back, backtrack!
Tara 46:19 Okay. Okay. So, um, because what advice would I give to someone recently diagnosed with a rare disease is, I would say, research online to see if there's a nonprofit for that condition. One of the best places that I have found support is on social media support group. Facebook has so many support groups, and specifically about the a vascular necrosis support group. That's where Dr. Michael Mont, the one that the avascular necrosis guru, every two weeks, he goes on, he does a live q&a, invite anybody on that support group to participate and ask him any question that you want whatsoever?
Lita T 47:08 I love that
Tara 47:08 Send him your Yep, you can send him your, your, your discs, to look at it, develop a treatment plan for you do all of that for free? Like he is? Yeah, it's amazing. So for any rare disease, I don't know. I wish my other conditions had that type of interaction. But the a vascular necrosis support group does and it's amazing. So I would definitely start with support groups. Social media, look for the nonprofit, associated National Organization for rare disease Nord, is a place to start to, that will lead you to any nonprofits, potentially, to finding help. And another option is research articles. That's how I found a lot of the doctors that I've met and saw, but based off of who wrote the research article, though, but that was my advice.
Lita T 48:13 Okay, thank you. How can we learn more about you then?
Tara 48:17 More about me, I will, I will send you my social media contact information. And I am actually starting next weekend. I'm going to start documenting my journey.
Lita T 48:30 Oh good
Ron 48:30 Okay.
Lita T 48:31 like a blog.
Tara 48:31 Yep
Lita T 48:32 And a blog. Okay, great.
Tara 48:33 Yeah. Yeah. Yeah, on a blog.
Lita T 48:37 Excellent. We'll make sure that we put a link for that in our website.
Tara 48:40 Yes. Because I want to hopefully, share and hopefully I can help others that have maybe experienced the same things that I have. Even especially with the surgery that I'm going to have to have too
Lita T 48:54 To get ready for, great, excellent idea. Thank you very much. Well, Tara, thank you so much for taking the time to join us today. And we're looking forward to speaking with you in the future about the other issues that you're dealing with. So we'll be scheduling, we'll be scheduling other appointments for you in the future.
Tara 49:16 Great, and I'm like, I got my first podcast down and there's nowhere to go, only improve. Right
Ron 49:22 (laughter)
Tara 49:22 like I'm only gonna get much better.
Lita T 49:24 Yes,
Ron 49:25 Oh you did fine. Don't worry about it yet fine.
Lita T 49:28 We're gonna definitely
Tara 49:28 I didn't even
Lita T 49:31 we're gonna definitely be pushing this episode into our veterans network so that other veterans and children of veterans will be aware of this as well.
Tara 49:42 I'm going to too and that's why I was going to ask you guys for your social all your social media
Lita T 49:47 Sure yes
Tara 49:48 because I'd already created like the post and I want to post it and
Lita T 49:52 Great, great
Tara 49:53 report although although I'm really reluctant because I so I wrote down all my answer, like I've rehearsed it. A lot of what I said is not even on what I wrote.
Lita T 50:04 Okay, alright
Ron 50:06 Maybe we should do that
Lita T 50:07 (laughter)
Tara 50:07 I don't know what happened. I don't know what happened. And I'm like, what I wrote is probably like, a lot better than what I said. And I was like, Oh my God, why did you do that?
Lita T 50:16 It always goes that way? It always goes that way. The only reason we use a script is, well, I think it's because of me, I have early onset Alzheimer's. And if I don't have a script in front of me, I forget where we are. I forget who we're talking to, I forget quite a bit. So it keeps me focused. And I think it helps keep us from talking over each other. Because when there's three of us on this side of the microphone, talking to you, it kind of limits how much we're talking over each other. So it helps us
Jean 50:48 And I tend to ramble.
Tara 50:49 Okay
Lita T 50:51 (laughter)
Ron 50:51 And I guess I tend to interrupt.
Jean 50:53 Yeah.
Tara 50:56 So if I tell you that I had the script in front of me, will that scare you?
Lita T 51:00 No,
Ron 51:00 not at all
Jean 51:01 no, no, no.
Tara 51:02 Ok Cause I had it in front of me. And I still rambled and went off topic. And I'm like, and I didn't even do it. And I was like, Oh, my God,
Ron 51:09 You're all good.
Lita T 51:10 I'm glad you did, because it turned out wonderfully.
Ron 51:13 Yeah,
Lita T 51:13 Thank you very much.
Ron 51:14 And actually, we do appreciate you coming on the show this morning and sharing your story with us. Quite interesting to say the least.
Lita T 51:22 Oh yeah!
Ron 51:23 And I'm sure that all of our listeners out there, learned a lot from this episode.
Lita T 51:27 I learned a lot.
Jean 51:28 I did too!
Ron 51:28 And we're looking forward to having you come on in the future to talk about some of the other conditions that you had mentioned earlier.
Tara 51:36 Yeah. And I have like, so I have so much better documentation that I could provide?
Lita T 51:44 Well, you know, what you could do is you could send me those links through email.
Jean 51:48 We can add them to our Pinterest Page
Lita T 51:50 When I when I build the website, I don't know if you're aware of this, but you'll get your own page on our website. And then I put links for everything that you would like, on our on your website page. And this way people
Tara 52:03 Awesome!
Lita T 52:03 can go right there. Yes,
Jean 52:05 Yeah And then we'll have a Pinterest page for you as well. And it'll have direct links to any research that you'd like to cite or any documents or articles.
Lita T 52:13 Right, right.
Jean 52:16 Awesome, so good because I have all of those, like, I have the whole slew of medical, even research and citations and everything
Lita T 52:26 exactly
Tara 52:26 and even stuff about Agent Orange, so.
Lita T 52:28 Right Very important to include. Yeah,
Ron 52:32 right. Right, right. Okay, well, thank you again. If our listeners have any questions or comments related to today's show, they can contact us at podcast firstname.lastname@example.org through our website, podcast dx.com on Facebook, Twitter, Pinterest, or Instagram.
Jean 52:50 And if you have a moment to spare, please give us a review wherever you get your podcast. As always, please keep in mind that this podcast is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or a qualified healthcare provider with any questions you may have regarding medical condition or treatment before undertaking a new health care routine and never disregard professional medical advice or delay in seeking you because of something you've heard on this podcast.
Lita T 53:09 Till next week.