Interview with Cynthia, MS Warrior, Coast Guard veteran, friend, dedicated mom.

Cynthia discusses what it's like living with multiple sclerosis, advocating for herself as a patient and a veteran, how she fought to get disability, and being a mom with MS.

Transcript

 

Hi, this is Brandy Schantz, and you're listening to Living Chronic. Today I'm speaking with Cynthia Hoyer, former Coast Guard officer, multiple sclerosis Warrior and friend. So, welcome Cynthia.

Hi.

So I know, you know, you served in the military same as I did. You were a Coast Guard officer, graduate of the Coast Guard Academy, and it was while you were in the Coast Guard that you were diagnosed with multiple sclerosis.

So could you tell me a little bit about what it was like getting, uh, a diagnosis of multiple sclerosis while in the Coast Guard?

Well, it's kinda interesting cuz if you look at my timeline, I actually had symptoms.  at the academy, but being the higher performance, because that's what's expected. Um, and I, and I knew the academy was pretty much my only, only way to college, so I just really pushed myself in because MS has such weird symptoms.

You kind of always think, am I making this up? Am I being too dramatic? This. And if you go to the doctor, they just sit there and say that you're mal, you know, they, uh, accuse you of being a malinger or, or faking it. So, um, I was diagnosed, let's see, I graduated from the academy in 19, uh, sorry, 1996. I went to, uh, from Connecticut out to my for ship in Hawaii.

From 96 to 98, and then while I was on my ship, I was a law enforcement officer, I was a deck watch officer. I was a morale officer. I was, uh, what we call shitty little job, S L J O, shitty little jobs Officer . Um, we do everything. Um, and you don't get any sleep and you can go from like the Barron Sea, where it's Subarctic weather to Panama and Columbia and doing drug interjection.

So that's, uh, very intense. You get no sleep. I was, Two, four hour watches. I was, um, doing, being a line of safety officer where I'm helping land the helicopters. I'm doing born's, um, drug enforcement, fisheries enforcement. Um, you get pretty intense. I do speak Spanish, but it's only  High school Spanish, so it's not really that great.

Not really all that fluent, but I would go on as a board officer. So you're dealing with the, uh, Hispanic, uh,  and, you know, male female, it's, they, it's just, it's different. It's, um, especially when you're out to sea, they're kind of a salty, shall we say, so, and they don't like listening to a female, but I could speak Spanish and so therefore I knew what they were saying when they were speak, you know, they were speaking their native tongue.

Um, so I, I was pretty

firstly and always had to deal with men in Afghanistan who weren't expecting a woman to show up and be the one in charge.

Yeah. Dynamics, human

Yes.

Um, so I managed to get to flight school. Of course now I'm down in Pensacola, so it's very hot, very again, very uh, how are you given the life story, Sam? I'm on a web podcast. Oops, sorry, , that's my son, . He's 21. Um, but, uh, I, so again, you know, no sleep, high stress, uh, new environment, a lot of information, a lot of boom, boom, boom, boom, high little high, a lot of high expectations.

I went, so that was 96 to 90. Uh, when I winged, I'm sorry, no, 96, 90 years on the ship, 98 to 2000 I was at flight school. Um, I went to Hum Air Station, Humboldt Bay in Northern California and um, and that's where I started. So I've been having all these crazy symptoms, but it really kind of came to a head when I was at Humboldt Bay again, I.

I think full blown MS symptoms. I was definitely, I can look back. I definitely had it on my ship. Um, my legs would just go numb. It was very hard to balance. And of course, the ship, but of course the ship is moving like this , you know, so that doesn't help

Well, it's interesting. It probably makes it even more difficult because I think all of us have the same story. I've had symptoms for years before I got diagnosed, but I thought, uh, it could be anything

Yeah.

or

know, right.

it's the blocking me.

Exactly. Cause I mean, it's the place cuz we were a very narrow hole. So it wasn't like an aircraft carrier where it was the big old birthday was like, yeah, . So in huge waves. Um, so I got to the Humboldt Bay and it just, I just couldn't do it. My vision went from color to black and white.

Uh, my memory just, you know,  just, it was just gone. It was just too much. I, I had bought a 1910 Vic, a 1910 Victorian house, so I was remodeling that. I was, I was single at the time, so I'm remodeling the house. I'm doing a lot of watch, I'm standing a lot of duty trying to get qualified in that air, in the aircraft under operations, make it operational and as a communications officer.

So lot of stuff going on. Um, and finally I just couldn't handle it and I resigned by flight.  and they tried to take away my wings and I said, but I haven't done anything wrong,

right.

but I can't be here anymore. I said, I'm not, I, I think it's one of the things I did learn at Flight School is if you're not safe, you can't, it, it's your duty.

safety of everybody

Yeah. You, it's your duty to, um, divulge or let people know. And of course, so I did tell my flight, my flight doc, um, he tried to, oh, he said I was a malinger. . Um, I need to get my act together. And he said that I was, I had an alcohol problem. No, I mean, I, I was drinking wine. I mean, you're in your early twenties, you know, of course you,

I know I had a drinking problem in my early twenties. I drank all the time.

yeah, But, but it's, but it wasn't, it wasn't like an alcoholic type of a thing. It was, you know, you get home and you're just like some cheap rose  because you're like, f whatever. Make yourself to dinner and get, get on with a day. So it wasn't until uh, Jason and I got married, but actually, if I can be honest, um, my dog ate my birth control pills.

Oh gosh. Oh, that's hilarious. Of all the things to happen, my dog.

lab. So I came home, had my little bag of meds, put it on the coffee table, no big deal. And I go off to the restroom to, you know, read a magazine cuz I mean, you're just like, you're decompressing from the day at work. I came out and there was, um, little Fall everywhere and I'm like, Susie, no.

Cause I thought she'd eaten my Hershey's chocolates. And I'm like, wait a minute, I don't have any chocolate. I'm like, oh. Oh no. So Susie was very emotional about it.  just kidding. She wasn't. Um, but I had a conference the next day in San Diego and yada yada. Yeah.

And that's what.

Yep. So my fiance became my husband.

Really quickly. So, um, but anyway, so that's, that's kinda what happened. Um, but, and that's why I resigned my flight status was because I just, I, I just realized, I said, it's just not worth fighting for. Do I wanna go qualify for another helicopter? No. Do I wanna go to a different air station? No. I, my, it was Coast Guard's small and my reputation was ruined.

Um, and I knew something was wrong, but I hadn't done anything wrong. I didn't break a helicopter. I didn't enter. , something was going on. So I got transferred down to the Marine safety office, LA Long Beach. Um, Jason and I got married, actually Jason and I got married, and then I moved down to LA Long Beach.

We lived in Huntington Beach. My house didn't have air conditioning because it was a block and a half off the beach. So therefore my,

well, that's that's true about California. My house in Monterey didn't have air conditioning.

Yeah. But, you know, but, and, and in hindsight, maybe it would've been different if it had AC and I couldn't rest and whatnot. But anyway, so then I had Sam, um, July 10th, 2001 and next thing we know we had September 11th and my awesome husband and new father got deployed.

Mm-hmm.

and, um, anyway, so I had dropped him off on the way up, excuse me.

Um, my, uh, started getting really numb on my right side. And then at a certain point I went on a different road. One of the toll roads is, uh, around Dana Point Toll Road north to about, um, Newport Beach. Anyway, so by the time, so my right side was already. Um, I felt it actually kind of like radiate across and of course the science major , I'm like, well, at hit minute one seven, , you know, I started feeling symptoms.

Um, by the time I hit, uh, Newport Beach, my body was completely numb. Um, like the numb tingly, you know, shake it out like your arm went to sleep cuz it was at a funky angle, no big deal. Right? So it was, so at that time, one of my girlfriends was watching. . So I went to go pick up Sam, and it was very scary. I, I had a four month old and I, um, we had a two story townhouse.

How do you get upstairs Because you can't hold on anything. You don't really know what you're doing. I mean, you're a, a new mom essentially of a newborn

A new mom. Husband's gone. New War. You know, for those of us, September 11th, that was a very stressful time.

Yes. Yes. So, um, the, uh, so that was Sunday. So on Monday I went in and saw the flight surgeon. Um, and I had been talking, so I, my, uh, triage nurse, if you will, uh, was a civilian nurse. God bless her, Lynn, ours, and she was Scottish and. . So she, so I told her this has happened bef cuz I, the numbness, the tingling, I mean, it was so bad that, I mean, I literally felt like when your chest goes numb and your lungs go numb and you, you know, and, and you just, you feel like you can't breathe.

And of course you can breathe, but you feel like you, you can't feel it. But it's like a little bit of a compression. It's, it's really hard to explain, but you can't feel your lungs expanding. You can't.  and, and you just, you and you're so overwhelmed cause you don't know what in the hell's going on. And, um, so yeah, she actually thank gosh she was there because of course the doctor came in and typical military, he is like, well, I see that you're, you know, well you're still, uh, you, you've got a newborn, your husband's deployed, you know, like it was, and he was acting so.

being as careful or something.

Well, the, somehow it was my fault and that I was making it up, I was being over dramatic because, you know, you just need, yeah, I know. You're, you're overly tired. Don't worry about it. You know, people have babies all the time. Just get over it. It's again, it's my fault and I'm making this up. So, luckily Lynn was there and she, she's like, she needs an mri.

She might have ms. She needs to get chained, or she needs to get evaluated for that. And he's like, you, I mean, you could sit there. You could, he was like literally holding. My folder. He is like, whatever, you know, you're a commander. You're you, you were in charge, you're you. And, and I was, and and she went, she definitely went to the map for me and she just kind of, they kind of had it out.

And so I'm looking between him and he's saying he's blowing me off and she's, she's getting after him. And I'm like, , should I make some popcorn? Cause this is a really good argument.

But you know what, haven't we, I think most women have seen this happen before, haven't we? Where you have that nurse in the room. It's usually a nurse, sometimes it's a younger doctor, uh, that woman who hears what you're saying and looks to that male doctor and says, no, this is what needs to happen. And I find That's a legitimate

I've heard the story. I mean, it's happened to me and I've heard the story from so many other people. A friend of mine was diagnosed with cervical cancer, thanks to a female nurse in the room. Who said to the male doctor who tried to tell her that maybe she was just having rough sex? No, this is a problem.

We need to get her tested immediately. And I think she has cervical cancer, which she did. So, you know, for all of us women, thank goodness for the medical female medical professionals out there who stand up for us, you

Yeah. And they're, and they're, and they're like the, uh, proverbial dog on a bone. They're like, no, listen, you know, you're not hearing what the patient is saying. Why, and what would and why are, I feel like it's almost like a collusion kind of a thing. It's like, what's, what's the difference? Are you paying for the medical procedures?

you know, you, you have no reason to not follow up on this. To not sit there and say, you know what? I might just be blown out of proportion, but let's send you for an mri. Let's take a little bit of a better look at this and, you know, let's take a moment, you know, even have a nurse go through it and say, ask the these bazillion questions and find out the dates and times if you can.

to, can I do the background search for you to sit there and figure out the pieces of the puzzle, to put the puzzle together, but they don't want to. So anyway, so Lynn got me, um, in for the MRI like the next day. Um, and uh, it was amazing. Um, very long procedure. MRIs were so much fun, right?

Oh, well, it's for me, when I had to go for my MRI to, uh, get the, uh, MS diagnosis, it was a three hour mri, but they had to give me all the pills to knock me out, otherwise, I lost it.

yes. It's very, very cozy.

It's way too cozy for somebody who is, uh, claustrophobic. That's for certain.

Yeah. So, um, to, to her, to her credit, um, the, the. The person who who did my MRI was absolutely lovely. And she goes, would you like a warm blanket? I'm like, yes, I would. , because again, I'm exhausted. I'm working 60 hours a week. And with the Coast Guard I've got the brand new baby Jason's deployed. We've got a, a chocolate lab at home.

I had, I hired somebody to come pick up the dog poop. It was great. I'm like, this is who'd I make it out to. Gotta pay you six months in advance. Yeah. You're God, Sam. Thank you. But, um, so anyway, so they, They got the results back and she got me in with Dr. Hornstein, who happened to be like the top five neurologists in the country.

His wife was a counselor and she was work with the MS Society. So I, I was so fortunate and so grateful that, um, they got me into like a, a therapy group and, and whatnot. . But yeah, so that was so, oh. Um, in the Coast Guard, you're not lodging the Coast Guard with ms.

you have Ms. Crohn's, lupus, um, your military career is effectively over. They're, they're, they're getting you out of there. It's just a matter of whether you get a med, uh, medical, retirement,

Mm-hmm.

disability. And that in itself is, you know, a fight for your life really.

Well that, and there's nobody you can't talk to, and I, I don't know about Army and, and the Navy, like the larger services, but the Coast Guard, we had nobody,

It's the same. You have to reach out. Um, often people hire attorneys, you know, you're losing your entire career and nobody's really, and if the military cert is looking out for itself

and why,

little as Uncle Sam,

Yeah. Who's money are they saving?

we.

yes. So the Coast Guard wanted to, to, uh, discharge medical discharge at 30% from the Coast Guard. And they said, well, that's okay. You just go through the VA and the VA will make up, you know, you could deal with the va, VA will help you. No, they won't because there's nobody there to help you either.

I mean, at that time I think it's a lot better now,

it is much better today.

after the war and. . I mean, again, the Coast Guard was discharging me with 30% for ms, and now, right now they're giving  sounds. Sounds bad, but they're giving men with Ed 30% or I'm like,

Well, it, there's no real, it's, I mean, that's a conversation for another day, certainly, but there's no real. equality in the disability often, uh, you know, I've met people, well, there's a guy who used to work for my husband, who is a hundred percent, but he lost his leg in Afghanistan. So it, it makes perfect sense.

Um, he, he lost a leg. Uh, but you know, you meet other people who are a hundred percent and you know, they've got a bad back. Are those equal? Do they have to be equal? Maybe not. , but it is certainly a system that's very difficult to get through, um, and understand how, how do you get what you're deserved after the military has, you know,

They're done with you.

done with , done with your health.

Yeah. Which, yeah, and I, I do believe that while there's no clear cause for MS or in a lot of other auto, um, autoimmune diseases, but you have to sit there and look at the environment that we're.  about the, um, atmosphere we were in, the environmental, the, um, everything, the holistic

environment that you were in and

what different things have done to various service members over the years. You know, we've, we're still learning about Agent Orange from

Agent Orange and, and now the burn pits. Yeah. They're finally taking responsibility for that. That

yeah. Years ago. Well, it's still okay. Yeah.

were, those were our parents when they were in their twenties.

I, yes, absolutely. Yeah. It's, it's amazing how long it takes to get some resolution and, and reality. All we want is some modicum of our life.

Yeah. Some something you can depend on, something you can build your life around that. Um, medical, financial, emotional. Where do you go? Who do you call? What's a trusted resource? And there's nothing and they just toss you out and

they'll do what they can to get rid of you for as cheap as possible. And like we were just talking about, , I don't want to depend on marrying well for my life. I was an independent woman. I, you went through the Coast Guard Academy and became a Coast Guard officer. I went through Army R O T C and commissioned as an army officer.

I wasn't exactly the woman going to class in my high heels and makeup and hanging outside the med school building hoping for, you know, a nice marriage proposal. By graduation, I, I was in. I don't wanna depend on my husband.

No. Cause we, cause we cause, cause we wanna stand on our own feet. And it's not like a man hitter kind of a statement, but you wanna be able to support yourself. We don't wanna depend on somebody, not because , you know, it's just, it's not who we are. We want to. Discover and challenge ourselves and go, go, go.

And that's one thing I told Jason, and he's been very supportive of me. He and I met at flight school. Um, he's incredibly supportive. But I said, I, I never wanted to be dependent. I, I, not so much, I didn't wanna be dependent on somebody. I wanted to be independent.

independence is the key. That's exactly what I try to tell people when people have said to me over and over again, well, you know, you don't need to work. Your husband can take care of you. And I say, that's not the point. I need something to fill my own life. I need to contribute to society, to contribute to our country, our culture, our population.

It's very important to me.  to wake up in the morning with purpose. So, you know, giving me an ability to do that, I think is very important.

Yeah, exactly. I mean, this all goes back to self-esteem and, and your self-image and, and your, uh, drive. I mean, if not, when we get sick, if we didn't have that drive forward, then we would just sit there and stagnate. And then if you stagnate, we're what's gonna, what's gonna ha honestly what's, how detrimental, how detrimental it is to your, your spirit.

And your body.

and I'm convinced, I've been talking about it so much that your mental and emotional wellbeing directly affects your physical wellbeing.

Oh, yeah.

I can certainly say, you know, obviously time is a a factor.

Mm.

I got off the medication I had a reaction to, but also with the Crohn's disease, it all of my health issues.

When I am addressing my mental health and I'm getting my emotional health in a better place, my physical health improves at least somewhat. You know, I may not be, you know, the healthiest person in the world, but there certainly is a correlation.

sure, definitely.

Yeah.

Oh, so I was gonna say, so they, um, I ended up getting, uh, Medically retire from the Coast Guard. Um, oh goodness, January of oh three. Um, they admin screwed up my paperwork. They tried to get me out on my dd, uh, was it DD two 19? Um, my D two 14. Thank you. It's been a while.

I know.

So, I mean, they, they, the, I, I, I, when I was reading my DD two 14 and I, and I said, wait a minute.

I said, I said, am I being. And they look at me. I'm like, no, seriously. It says here, I'm not even a high school graduate. me? Yeah,

into Guard Academy.

yeah. Um, although I didn't know somebody who was actually a high school dropout, just financial reasons for his family, he had to drop out to support his family.

Smart guy, electrical engineer, man, Sean John was fantastic, but um, but the information is all in. My dates were off, my qualifications were off. My training was off. It just, and I was like, who? But if I hadn't actually like, looked at it seriously, because I, my, my stepdad was actually a yeoman, so he was admin.

I just assumed why would they have incorrect paperwork? It's not that hard.

It's not, but you know what, that's probably one of the most important things I've learned in general in life when it comes to advocating for yourself, advocating for your health, advocating for your career, advocating for, uh, something you need in life. You've gotta check the details because somebody else might not.

And knowing the details and knowing what you are entitled to is so important and fighting to ensure it's done correct.

and knowing which manual, cuz it says clearly on this page, on this second paragraph, third sentence, it says, this is what I'm entitled to. And so why are, um, for instance, they, they, um, di or they didn't allow me, or they dis I had a, I had a lot of leave. But see, because I was sick in quarters, I didn't actually deserve that leave of two and a half days.

not how the military works.

Yeah, so, so they took, so they, they took it back and they paid me, but they didn't gimme the housing allowance for two and a half months in southern California. That's kind of pivotal. So that's, you figure, that's, gosh, 25, probably 3000 a month.

So that, This crazy and other military will probably think the same. I'm sure civilian, because in the civilian community, if you don't work, generally speaking, you don't get paid. Um, but in the military, how many people get to go?  when there are usually a captain, maybe a junior major, get to go to graduate school and just go to school every day and have fun while getting paid as a full-time captain or major.

I know it's awesome.

It is the one of the greatest benefits of the US military. But you know, to think that there's people we're, you know, right now is we're doing this. There are people who are already out of class and being paid as a major, even though they're now sitting at the Starbucks with a friend having a coffee.

but although I, I can say this though, I mean, we were actually discouraged from Jason. Jason was discouraged from going to, uh, Naval Post grad school in Monterey when he was in, because that was gonna kill his career. And you don't wanna do that.

Oh.

so a couple of, a couple of our peers, Got to, got to go to Monterey and somehow they still made Lieutenant Colonel, so I'm like, hmm, we couldn't really use that time

But It's, it's, a nice time, especially after deployment.

yeah, so I mean, we were doing the deployment, so he did five deployments in six or seven years and just, it was just one after another. And so, . Um, I think one of your questions was going to be, uh, what would I do differently? I would've advocated for ms. I would've sat there and said, I can't do this. And you have to listen because not only can't I do it, like I can't be out in the heat and I can't, and, and I don't care if I'm in the shade or not, cuz my body's going, , no, you need to get back in your air conditioning and, um,

I do always ask people, what do you wish you knew when you were first diagnosed?

fight for myself.

yeah, fight for it. Be honest. Don't, you're not wrong If you're feeling a certain way, you're feeling it.

Yeah. And, and you need, and we need to hire a nanny. We need to hire a babysitter. We need to hire housekeepers or something because it was just, but you know, it's all, I'm Marine Corps wife and I can do it all. And I'm going to

We all think

brownies for the meeting and I'm gonna help this young wife and I'm gonna, you.

Make us all spiffy for the photos and the command. The command, fun, monetary, fun,  type thing. And, and, and I can barely walk cuz I'm just so exhausted and I'm dizzy and, and I just, yeah. It, it was awful. It was so, it was so hard. And Jason, I, I think that he knew that I was sick, but I don't think it, it wasn't until I.

We were actually in San Francisco. We were at the Marine Corps Memorial Hotel, and they were walking a block, block and a half ahead of me and he's like, well, come on, let's go. It's, it's downhill. Why can't you walk any faster? He said it nicely, . So that's why he is still alive, . But, um, I said, I literally can't make my legs go any faster.

I'm a cross country runner. I was, you know, I played soccer and also all these other. I can't make my body do this, it just won't,

I think that's the important, that's one of the most important lessons to learn, and it's probably the most difficult acknowledge. you know what? I'm sick and I can't do this today. And that's fine.

yeah. Yeah. So I'm, I'm sorry. I know I'm, I'm getting off track. So

It's okay. Actually, it came right back to it. So Well, because that is the, the question I like to ask everybody, because I think it's important to put all of these things together. What do we all wish we knew when we were first diagnosed, or, you know, when you first became a caregiver, when you, uh, first. got involved, uh, you know, with whatever you're involved with. Uh, because the lessons are important ones and unfortunately it takes all of us, sometimes, many, many years to learn some of them.

Mm-hmm.

I, I, I think that's important. And you did advocate well for yourself getting out with the Coast Guard art?

But it took years to do that. And then, well, and then also, one thing I also wanna say to advocate for is the Social security disability is, um, so after, so we did, oh goodness, three.  or four tour, he did three or four tours, I should say, by the time. So I got outta the Coast Guard and moved down to Oceanside.

Um, we, we bought a house. We had, we, we'd already had Sam's, so Sam was about three and a half years old when, well, he was about three when, um, we decided to have a second child, uh, Emma, and she. Born. Uh, so he deployed and he was supposed to be back like the beginning of December. She was due December 23rd.

He came back in April. We were supposed to move to, and so, yeah, so Ali, well, Bella didn't make the birth. She was four months old when he met her. That was after six. It would've been six.

yes.

Uh, of when she was born. Born, and he showed up four months after that. So sold the house, moved across country. We were in down staff, which is right by Quantico, and Jason was working at Quantico.

And, um, my neurologist there was, he was a very good doctor and, but he was a military, a previous military doctor, a civilian military doctor. So I was like, I, but I was going.  exacerbation after another. Um, I was on beta stern, which is a, um, subcutaneous shot. It's every other day, but it hurt. And I'd have these big red welts on my legs and my back, my arms and tops of legs.

And, and again, I mean, really, do you wanna get spot, you know, stung by the Hornet every other? No. So you're like, did I do it the other day? Mm I, I'll do it tomorrow. And so I wasn't very as compliant as I should have been anyway, so I said I'd like to change medicine. And he said, well, why would you go to different medicine?

You're not compliant with this one. I said, I'm not compliant because I haven't big red welts. And so anyway, and then, and then I said about,  going for Social Security Disability. But again, I've not been told anything about this stuff. I have no idea who to call, how to do it. I think I was one of those infomercials, you know, call now for malpractice or whatever.

Um, and uh, so I wanted to file for it and he says, it looks me nice is do you really think you're that sick? But it was kinda one of those, you.

question you.

know, I think you're being a malinger. Are you really that hurting? And I thought I should have said yes, I am. But it wasn't until I stood up for myself. And, but, but again, by that time I had already been denied three times.

Um, wasn't getting any help from him. And luckily we had moved back to California anyway. Um, so I tried it when I was back in California. , my doctor there, he is like, well, you know, and of course I hadn't kept any of the paperwork because again, my life is just like, ah, you know, it's crazy. I've got a one year old, I've got a four year old start in kindergarten.

I'm trying to be class mom. I'm trying to be the awesome Marine Corps wife and everything. I'm mostly, I'm just so overwhelmed and exhausted. But I mean, it's, you know, the exhaustion's not just a normal, oh, I need to nap. It's, I, I'm falling asleep on the stair. You

Yes,

who does

we all know about falling asleep in random places.

exactly. I'm just gonna lay down here.

Um, but, uh, anyway, it wasn't until there, I actually ended up hiring a lawyer, $12,000 and two more years of him, of he in his office filing the paperwork and doing this stuff and doing that stuff. Now I tried to do it myself. And I'm crying to Jason. I'm just bawling. I'm like, can you please help me? And he's like, it's just government forms.

It's not that hard in his brain. You're, you're right, it shouldn't have been that hard.

You know,

But when you have to focus on the ability to get up, get dressed, eat something, you know, make sure you schedule or try to schedule. A nap and ex, you know, accepting you, you're, when you're so focused on living your life on a 24 hour basis, you don't have time for the thought process.

Um, and the scheduling and uh, time. You know, the timelines that need to be submitted by and notarized or whatever, cuz you're just like, You, you just can't do it. And you, and you don't know why you can't. You used to be smart. You know

right. And I think we've all had, you know, I mean, you, you have the severe fatigue. We've dealt with the brain fog. Um, I had a big.  problem with ba brain fog. Just last week when I did my previous podcast episode, I kept forgetting words and um, does that mean I can never do anything? No, of course not.

But at that moment, did I need a nap? Was that particular task difficult? It was,

Yeah. And you're feeling such a failure, you're, why can't I get my stuff together? You know? Um, so yeah. So 12, yeah, I think it's like $12,000, which is not tax deductible, fyi.

It's not,

But, um,

but you did finally get Social Security Disability

yeah.

a huge.

Uh, finally. Yeah. And I'm so grateful for it. But again, if I have issues with trying to do this, and not to toot my own horn, but I went to a good college just like you did. You know, we're, we're,

And when, like I always tell people I'm a pushy broad. yeah, we're, we're going and going and going. We're, we're like, yes, there's a problem. Yes, I've got a solution, and let's go.

Let's go, let's go. And you schedule and you know, and you get everybody working together and on you go and, Couldn't I remember I had a, um, panic attack trying to get to the commissary cause I was picking up, um, birthday cupcake or cupcakes for Sam's birthday. He was in second grade. And I have a full blown anxiety attack because I'm worried that I'm not gonna make enough cupcakes.

They're not gonna have enough miniature cupcakes that are, that are um, all steeled up. And so you can bring 'em in there cuz you know, cuz you can't make anything yourself and cupcake.

you're just doing all you can.

For second

Our next, I'm our next podcast together. I definitely wanna talk about anxiety because we all deal with anxiety. It's such a big part of having an illness, a chronic illness. And nobody talks about it. It should. The, the very first thing I believe should be done when you're diagnosed with a chronic illness is you should also be immediately sent for mental healthcare.

Put them as a part of your team. Make that a part of your healthcare plan. cause we all deal with anxiety. I've had panic attacks over things you would never believe that it's part of our life.

well between anxiety and depression and, and, and just, and the shame,

Yep.

you know, cause you can't do stuff anymore. We're both pushy. We're both pushy rods and we're

Yeah, she brought now everything I,

and we're, and we're so dependent on somebody else. And it, it's another. . It kind of kills our spirit too, cuz it's,

It's, but that's a, it, it it's a fact of life. It's a great point. End on, um, you know, best thing to learn is to advocate for yourself and really stand up and say, Hey, I'm sick. This is what I can't do. And then every day the stuff, we're gonna keep learning and keep talking about depression, anxiety, and the shame of feeling like you're not being the best you because of your illness.

Yeah. Cause you can really do better. It's like, I'm trying, I'm not trying. Oh, I think, and also, so keeping screened for the anxiety and depression, but also allergy testing.  and, and why not? It sounds really silly, but why not just hand stuff out to saying, you know what, why don't you just try the elimination diet if you wanted to do it?

This is how you

would, they had me do upfront. I will say

I mean, because cuz I don't, I don't know how to do that stuff. Why not sit there and say, you know what, again, the little double asterisk, you know.

part of the care.

you might maybe look into this, it could help. It may not. I don't know. Other people have been successful for it and just makes you understand your body a little bit more.

the nutritionist, the exercise science, the mental health, the rheumatologist, or the neurologist or the gastroenterologist, whoever it is that you need to see for your physical. , you know, it's all part of a team. And that's, that's ultimately what what we're trying to get at, get, find a way to get that perfect team put together so we can better live our lives.

And for some of us, the attorney, to ensure you're getting what you deserve from the VA or, and or social security dis.

Well, and also I was gonna say, cuz sometimes I don't know about you, but sometimes you feel like you're chasing your tail. Between chasing your tail and then the whack-a-mole, boom, boom, boom, because you're exhausted. Well then, okay, am I hydrated? Am I eating properly again, nutritionist and you know, sensitivities.

And then have you, do you have rest? Do you, have you been hydrated or have you been drinking too much coffee? You know,

It's a daily battle.

so, but I'm just happy. I'm just happy to be here and thank you so much for asking the.

Thank you so much for coming here and sharing your life and, uh, what it's like for you to be living chronic. Thank you, Cynthia.

Thank you very much, Brandy. Appreciate it.