#567 Constant Struggle

October 28, 2021Scott Benner

Constance has type 1 diabetes and a host of other medical issues.

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DISCLAIMER: This text is the output of AI based transcribing from an audio recording. Although the transcription is largely accurate, in some cases it is incomplete or inaccurate due to inaudible passages or transcription errors and should not be treated as an authoritative record. Nothing that you read here constitutes advice medical or otherwise. Always consult with a healthcare professional before making changes to a healthcare plan.

Scott Benner 0:00
Hello friends welcome to Episode 567 of the Juicebox Podcast

on today's show Constance is here Constance has a number of medical issues one of them is type one diabetes. I went back and forth about whether or not this should be an after dark episode because one of her problems involves her private lady area but you're all adults you can handle it. There's no reason this needs to be an after dark episode. When I was recording it, I felt like this episode started slow and finished strong. And when I went back to do the Edit I I agreed with myself so there you go. I agree with myself. Please remember while you're listening that nothing you hear on the Juicebox Podcast should be considered advice medical or otherwise please always consult a physician before making any changes to your healthcare plan. or becoming bold with insulin or like you're gonna like Constance, I found her to be genuine and very sincere. I have a couple of seconds here so let me remind you T one d exchange.org. forward slash juice box go take the survey takes less than 10 minutes you just have to be a US resident who is the caregiver of someone with type one or a US resident who has type one, you answer some simple questions. And boom just like that you've helped people with type one diabetes. This show is sponsored today by the glucagon that my daughter carries. g vo hypo Penn. Find out more at G Vogue glucagon.com forward slash juicebox. today's podcast is also sponsored by trial net trial that is available at no cost to relatives of people living with Type One Diabetes. It is a Risk Screening that identifies type one in its earliest stages, often years before symptoms appear. Early detection allows you to take steps to try and change the course of the disease trialnet.org forward slash juicebox tell them the Juicebox Podcast sent you.

Constance West 2:12
Um constant constants last currently, I will eventually change my last name. I have been a type one diabetic for 13 years now. And I just have like a complicated medical history. I don't know how to you

Scott Benner 2:32
know, I know it's hard to introduce yourself. Wait, but I loved what you just said. I'm trying to figure it out. You will change your name eventually.

Constance West 2:40
Oh, yeah, sorry. I got married in February.

Scott Benner 2:43
Oh, I thought you were like I will make a conscious decision to change my last name at some point. Or I was thinking you were thinking, I think I will get married.

Constance West 2:52
Oh no, I am married. I'm a married woman.

Scott Benner 2:55
Oh, you're a married woman?

Constance West 2:57
Sure I am.

Scott Benner 2:58
I'm a married man.

Constance West 3:00
Great. I'm 2626 Yeah, I was 13 at the age of diagnosis.

Scott Benner 3:11
Okay. Alright, so you're, you're right at the, you've split your life now. 13 years with 13 years with that?

Constance West 3:18
I have and you know, it was really funny. The day that I had my 13 year anniversary. I was working at the hospital that I was diagnosed. And it was a really it was kind of crazy. My job I work as a certified nursing assistant at one of our major hospitals in the area. I'm not going to say the name because I don't think I can. And they worked there for five years. But I haven't diagnosed there and it was it was good to be there. Like I'm running around crazy doing my job. You know, I'm on my feet for 12 hours straight and I texted my husband and I was like there better be cake when I come. Like if any anniversary day. I'm in cake. It's today and he had gone out and rehab a bakery close by and he had gotten me my favorite piece of cake and I just sat at home and I was like okay, this is good. I've never spent my anniversary my diabetes anniversary actually working before so I think it was good to come full circle and just, you know, 13 years previously, my life had changed forever.

Scott Benner 4:30
Yeah. Did you have any like, like flashback key moments during that day where you walk down and you remember things?

Constance West 4:36
Oh, no, our hospital has changed completely and the 13 year time frame. We have like two new readings. And the emergency department is no longer where it used to be. And so it there were no like flashbacks. It was really funny. When When I was diagnosed my diagnosis story was I had just started junior high in junior high up here starts in the sixth grade. And so you're at a school with sixth graders to eighth graders. No, sorry. Seventh to ninth graders. ninth graders and

Scott Benner 5:26
that was a child right? Because if not your dog can speak English. Oh, that's my dog. Yeah, what did it just say?

Constance West 5:35
Mom?

Scott Benner 5:35
It did right?

Constance West 5:37
Yeah, he says mom they both say mom, they're German Shepherds. We have a boy German shepherd and a girl German Shepherd, Lucien Atlas and they both say mom,

Scott Benner 5:47
Constance, I don't want to panic you but there are aliens in your house posing as German Shepherds. And you should probably run away

Constance West 5:55
right now. I mean, Lucy alerts me if our blood sugar so she's bad.

Scott Benner 6:00
Does she say anything? When it happens?

Constance West 6:03
No, she'll, she'll jump on my chest like unusually. So Kyle, my husband works evening shift. Or actually, they moved on to night shift recently. So within the first first like three or four months, we got her. He was working a lot of overtime. And one night, she just jumped on my chest. And I mean, she was fairly like 35 pounds at the time. And she would not get off of me. And I finally did a check my blood sugar with with not with my Dexcom at the time, and my blood sugar was low. And she's continued to do that. So she will alert me at my lowest when I'm sleeping and like my pump doesn't catch it. Or my Dexcom doesn't catch it fast enough.

Scott Benner 6:54
Because it's an alien. Listen, I know you love her and everything, but you have to leave the house. Your husband works at area 51 overnight, and he brought the dogs home is all this correct? No, no, like you're lying now to protect the dogs. That's crazy. Do you have a diabetes alert dog that chained itself? Yeah. Yeah. Okay.

Constance West 7:18
And so when I like when my head hits the pillow, like I'm so busy when my head hits the pillow on. Like, ruin Kyle's home, we'll lay down to watch a movie and I'm gone within the first five minutes. And so whenever she will, like jump up on the bed, and she'll start whining. He always like pushes me because like, check your blood sugar.

Scott Benner 7:40
How lovely and sweet. It says if you're newlyweds almost What a lovely story. The dog will all fall asleep from working so hard all day, then the dog will wake my husband up to let him know my blood sugar's low, and he kicks me Ah, just like you imagined at the wedding. Don't you think?

Constance West 7:59
Yeah. I mean, we've we've been together and living together for three years. So I mean,

Scott Benner 8:06
you Imagine all the people listening are like the shine rubs off in three years does it?

Constance West 8:12
Yeah, well, I've been married since March. I don't know it's no different than when we weren't married. So

Scott Benner 8:17
he kicked out when you were single as well.

Constance West 8:20
I mean, is it single? If you're in a relationship and you live together?

Scott Benner 8:25
I mean, I think technically it is. Yeah.

Constance West 8:28
I don't know. I always thought of myself as married to him anyways, because we were just like, together.

Scott Benner 8:34
There was no constants by by way of where you grew up. So I can't I can't trust your social construct ideas. Because

Constance West 8:43
Oh, no, that's not that's not a norm over here. I can tell you that for sure. Yeah, nope, nope. Nope.

Scott Benner 8:52
Alright, so you're 13 you're diagnosed it's only 15 years ago. So you came out with good insulin right? What did you get?

Constance West 9:03
We got human login. lantis. Actually, can I just backtrack for a second?

Scott Benner 9:09
You can say no, I'm just teasing you.

Constance West 9:13
And the hospital of I did have like this last anniversary. And March. It was really funny when I was diagnosed. So like, we had been trying to do a workup for actual cancer because I was so sick and like, there is not really anything that the doctor could figure out my PCP and so and mana was also going around at the junior high was and and so this was like a several week thing. I was so tired. I was not really actually paying a lot. I was drinking a lot. And they couldn't figure out what was going on, but they never did a glucose test. And then all of a sudden one day where And they're and they're like, Oh, we run an aliens t test. And I actually found that a winsenior a one C is 10.3 you need to go to the hospital. So we go to the hospital and like, we're in the emergency department and we're waiting for that new chronology team to come back and some like general surgery resident is just like looking at me to make sure I'm okay as we're waiting for endocrinology to come down from clinic. And he goes up in your mouth because they're doing their system check. And he goes, Oh, my gosh, your uvula goes the wrong way. And then, like I had a whole herd of residents who came in through in and out of the emergency department room as I'm waiting to see the chronology and they all just want to, like open my over wanted me to open my mouth and check my uvula because they've never seen that you do that went forward and not backwards.

Scott Benner 10:51
Listen, does it really does it still do that? Yeah. Yeah. First time, we're aware of it.

Constance West 10:57
Yeah. And so that was like, that every year will get me because that's really what I remember from that day.

Scott Benner 11:05
Or you feel it goes the wrong way. Oh, my. That's so bizarre. It can't even be the title of the episode. You know, one time constant. Somebody said to me, can I tell you a funny story? And I was like, Yeah, they told it. And I thought the whole time they're telling I was like, This is not funny.

Constance West 11:22
Maybe that wasn't funny. It's always funny to me that

Scott Benner 11:26
I was amused This time, I'm just telling you there was the one time while the person was telling the story, and all I could think was like is not funny at all. So you're okay, so tons of people look at your uvula. I also am interested and I think everybody should be you can tell a person who's living with autoimmune issues because you're like winning you're a funny story. People thought I had cancer. But it wasn't anyway, I just have and what do you have? You have type one, but you have other stuff too.

Constance West 11:59
Yeah, so I have type one diabetes, I have hashimotos I have I always forget and so I had been told that I have sjogrens disease, which is your immune immune system attacking your glands that secrete so like your mouth. And then those vagina Sorry, I'm gonna say that word a lot. And then Lycan sclerosis, which is the immune system attacking the genital tissue and

Scott Benner 12:38
Okay, so you're a little soft spoken so let me just say a couple things first, so you had so I never can say this because they put dots above letters and when they do that you've lost me but sjogrens disease show show grins I just order of your immune system identified by two most common symptoms dry eyes and dry mouth. Do you feel like you have that or you're just somebody tells you?

Constance West 13:05
No so i i do have dry mouth and I do have dry eyes and then they can do an AMA and anti nuclear antibody test which is like kind of the standard and at the time that I was told I had that it was it was showing positive maybe it was for something else at the time. But I have a neurologist that just went and did labs and my ama is completely negative so he's like, I don't think you have shell grinds anymore if you ever had it, but I do have constant dry eyes and constant right now

Scott Benner 13:37
can last for years or be lifelong. Now. The next one lynchin school right skin lichen sclerosis,

Constance West 13:48
yes, lichen sclerosis, or we can call it LS because it's also called bat.

Scott Benner 13:53
Why don't we do that. So I want to say sclerosis again, in a long term is a long term skin condition that mostly affects the gentle and anal areas. It causes your affected skin to become thin, white, and wrinkly. It turns you into my grandmother. It is due to inflammation and other skin changes in the affected area. Common symptoms include itching, irritation, and painful sex. Wow. Yeah. Yeah, less than a rare condition. By the way, which always makes it feel worse in my mind, because they're like, you know, all the countless millions of people on the planet. Only 200,000 a year get this thing and they're like, great. So what's your first diagnosis in your life?

Constance West 14:40
Well, I also have pelvic floor dysfunction

Scott Benner 14:43
on pelvic floor dysfunction. That pops right up on Google. That's interesting.

Constance West 14:52
And then my, my pelvic floor muscles are hypertonic

Scott Benner 14:56
you're okay? your pelvic floor muscles are hypertonic Yes. And that doesn't mean they're like a bubbly drink at all.

Constance West 15:06
No. So hyper just like high blood sugar hypoglycemia, they are. Constantly contract it. Sugar high, or high tone.

Scott Benner 15:16
Okay, pelvic floor contractions can also be measured internally with a paragon meter, which is a tampon like sensor that can be placed in the vagina or rack them. I mean, they say, only go one way with that can also be used to diagnose pelvic floor dysfunction. Have you had this test?

Constance West 15:40
Yeah. So what is it called specifically a urodynamic test. So they like go in. And what they do is they put a Foley catheter in to the urethra, and they start filling the bladder full of normal sailing. And then they also have the little probe that you were saying, and the vagina, and then they measure how much the bladder can hold before it starts contracting and then making the pelvic floor muscles contracting. And at that time, my bladder could only hold 62 L's before it started having contractions equivalent to childbirth. And so 62 ml is two ounces.

Scott Benner 16:25
Okay, let's go slow, because this isn't happening to me, and I'm getting upset. Let's go with what was your first diagnosis? And how old were you? Was it the diet? Was it the diabetes?

Constance West 16:38
It was a diabetes at 13.

Scott Benner 16:39
Okay. Which now seems like passe if I if I may say,

Constance West 16:45
No, honestly, yeah, my diabetes is the only thing like, people are like how you do it? I'm like, Oh, no, like high right? not do it.

Scott Benner 16:54
Yeah. Honestly, it probably is the least of your issues, right?

Constance West 16:59
Yeah, I think so. I mean, other than like, when you have a really low blood sugar, and you feel like,

Scott Benner 17:05
right, no, no, I understand. And by the way, it's cool that you curse because you got my you're supposed to go you can go from one way to the other, but not the other way. Joke earlier and you left under your breath. And I really appreciate it because it's early morning, we should tell people it is a day I'm here is the earliest i think i've ever recorded an episode. Not to say that it's super early, but it's five o'clock where you are right? Yeah, yeah. Right. Yeah. So we thank you very much for doing this like this. It was and what happened? You had a doctor's appointment, and we kind of got our things messed up. But my schedule so full, like, there's not a lot of options. So yeah,

Constance West 17:43
I have a doctor's appointment, and I thought that it was Eastern Standard Time. Which I was like, Yeah, fine. 5am my time No problem, but it was Pacific Standard Time.

Scott Benner 17:52
Yes. It's no big deal. I'll sleep tomorrow. Great. Yeah, it's not a big deal. Actually. I'm joking. I'm fine. I think you might give me a nice day. I should probably get up earlier to begin now. People are like, wait, he's not up at eight o'clock. Usually I am up at eight o'clock. I'm just not usually working at eight o'clock. Yeah. Alright, so what comes after the type one?

Constance West 18:13
Um, what was really cool about my NGO, she was constantly when they withdraw, they even see she would also draw t three and TSH and so she caught my hash not not even hashimotos but hypothyroidism really early, so I was on 25 micrograms of love of pyroxene. Until then, like from, I think it was 15 I was diagnosed with that. So 15 all the way to 20 before we even need to do it dose change.

Scott Benner 18:49
really early that she caught

Constance West 18:51
it super early. And then I'm 22 now it's just been a freakin roller coaster of trying to get it under control. And I think we finally have

Scott Benner 19:05
and doing it just with T four.

Constance West 19:09
We have no way I do love and by Roxanne and then lift those hierarchies. By running why Oh fine. By running?

Scott Benner 19:19
Is that a T three? Yeah. So not sight. Oh, have you tried sight? Oh, no, no, no. Okay. That's just a brand thing. So now you have a good seat. For people who don't understand or test my remembrance of this. You are you don't you can't you're not making the T four but you're also having trouble picking it up. Right? So the T three helps with that. It's all in the thyroid episode people. It's one of the one of the stranger things that I'm not good at remembering is that

Constance West 19:51
Yeah, so I believe if my nursing education has stuck in my brain long enough, t three is converted to T four To go to the south,

Scott Benner 20:01
there's there's there's something about when you don't convert it when you don't pick it up well you can,

Constance West 20:06
right. Right. And I just I think what it is is just it's not fast enough. It just doesn't work fast enough and I have seen a difference since starting the lie of irony like I've always had fatigue and the fatigue is a little less again I'm a very busy person, but I'm just constantly fatigued if I could sleep all day long I would probably sleep 20 hours a day.

Scott Benner 20:30
That is a real serious implication of thyroid issues that people are just they're tired even when they get their medication right they can still be tired Yeah, yeah did t three give you a little kick? Or no?

Constance West 20:47
Does anything we just saw my end last week I was like can we titrate down on the GSA can go up on the on the cheap three a medication on like I just want to see if that's more helpful because at this point, it's working But could it work better to push boundaries? Yeah, I have

Scott Benner 21:07
to be careful with the what is it I'm thinking of like you can start getting like teeth grinding or heart palpitations. Stuff like that.

Constance West 21:18
Yeah, there's a very narrow therapeutic range for thyroid meds so I'm aware and I do get those if the dose is off at all I will get them and they will come full force and and just message and ask for a lab and then they adjust but she was like yeah, we can do that. And it should be about the same amount that your your body should normally make but your thyroid toast so

Scott Benner 21:43
great. Okay, so do you have any other problems like in that those years getting it together where your your hair keep falling out? Or issues with weight or anything like that?

Constance West 21:56
I never had issues like wait until recently. I've always had been hair does get thinner. They did find a nodule on my file, right? So we get that checked every year and make sure it's not cancer. cancerous.

Scott Benner 22:13
But yeah, just like it. The nodules are sorry to cut you off the nodules indicate hashimotos Yes, right. And that's, that's a common if you have hashimotos you're gonna you will likely see so what do you get like ultrasound? Mm Hmm,

Constance West 22:29
yeah, but if we they also tested for antibodies and they found them which was the confirming diagnosis because you can have a nodule without having

Scott Benner 22:39
the antibodies? Yeah, right. Okay. All right. So what came next?

Constance West 22:47
What came me sjogren

Scott Benner 22:55
sjogrens was next. Alright, so can you kind of put into context for people like dry eyes dry mouth is it a constant is it something it flares How did it How does it present?

Constance West 23:08
Yeah, it's kind of the dry mouth is definitely constant. And so what they tell you to do is say like either eat candy Keep your mouth Keep your mouth full of saliva by eating candy throughout the day. Sorry I have diabetes that I can't just be candy willy nilly so that was never an option and so chewing gum was how I would try to keep it kind of what and keep your mouth with the amount of saliva it's supposed to have and secrete enough saliva Jimmy able to eat and then the dry eyes It's they just it's kind of it can be intermittent like from screen all the way through summer usually it's pretty bad when it gets drier

Scott Benner 23:59
and that's used like wedding drops or

Constance West 24:03
and I have when it gets really really bad I have specific ones for that I mean suppression of that a go lacrimal gland I think it is to like actually moisten the eye I'm not exactly sure how it works and I just said the completely wrong thing um but yeah, so it's like an immune suppression drug for your eyeballs doing it's really bad I use those but yeah, there's not really anything else that they can do for

Scott Benner 24:41
the dry mouth just the irritating or I guess it could have other impacts too right like you can end up with like more cavities because of that there's

Constance West 24:49
right and so that's what happened was I got more cavities and I maybe maybe the sjogrens has been lifelong and it just intermittently enough that it which is sticking my teeth but by the time that I was 18 I had shown many cavities and at this time I mean I was looking at my a Wednesday when I was diagnosed was 10.3 but I couldn't go back and see labs all the way back in the highest that I ever had after that was like an 8.6 so my diabetes has never really been out of whack far yeah, it's not it's been out of whack if you ask my parents but whatever, um, and my diabetes should not have caused it their dry mouth or the decay and they're not that happened and so the time that I was 18 I had to have like $30,000 worth of dental work done which insurance was did pay for which was great. Because there was just so much decay going on, I'd show fast. And then at the age of 20, or vine, I my two front teeth, I was I was I was working i think i think i was at work and I was eating something and just both of my two front teeth just snapped. Holy crap. Wow, they just snapped and I had had a couple of other cavities that were working their way through on the upper and the bottoms after all of this dental work. Three years prior to running to the dentist and the dentist was like well we can spend another $30,000 trying to fix all of these or we can just take all of your teeth out.

Scott Benner 26:45
Okay, I'm gonna put the ads here but trust me when I tell you a constant is just getting going. The really crazy stuff is yet to come. g vo hypo pen has no visible needle, and it's the first pre mixed autoinjector of glucagon for very low blood sugar in adults and kids with diabetes ages two and above. Not only is chivo hypo pen simple to administer, but it's simple to learn more about. All you have to do is go to G Vogue glucagon.com forward slash juicebox. g Vogue shouldn't be used in patients with insulin, Noma or pheochromocytoma. Visit g Vogue glucagon.com slash risk. So all week I've been telling you what people on the private Facebook group have been saying about the advertisers and trial that is no different. Jamie says that after her son's diagnosis, she had her oldest son and herself tested. Just for the peace of mind. Katie tells me the town that was able to help her keep a very close eye on one of her other kids and that her daughter was able to be diagnosed and start insulin very early. Because of trauma that she says we avoided DK or even a hospital stay. Jill says the town that helped her to know what was potentially coming with her kids. and due to that they didn't have to be hospitalized when officially diagnosed with type one. And they never went into DK for this story pops up over and over again here. Carrie says town at help with an early diagnosis for our son 18 months after the diagnosis of our daughter. There's a lot of a lot of sentiment in here about trial net, I'll tell you it's absolutely free. You can do it one of three ways. They'll send you an in home test kit, you can go to a lab for a test, or visit trial net location. It's really worth your time trial net.org forward slash juice box at some point during the process, the last few where you heard about them, please say that Juicebox Podcast then complete the testing and send it back to them. And that's when the show gets credit when you send it back or go to a lab. Now when you just ordered so you guys are out there wanting to help me. You know just ordering it's not going to help us to complete the process trialnet.org forward slash juicebox T one D family members are at a 15 times greater risk to develop Type One Diabetes than the general population. T one D risk training will detect if you are in the early stages of T one. If you are identified as at risk trial net is here to help you. They have prevention trials if your screening results show that you are in the early stages, you may be eligible to join a prevention study that is testing ways to slow or stop the disease progression. And you're eligible for ongoing monitoring by top Type One Diabetes researchers. And if you happen to develop type one being monitored and clinical research studies, like you heard from some of the listeners, decreases the chances of DK trial that says from 30% to 3% trialnet.org. forward slash juicebox. There are links in the show notes of your podcast player at Juicebox. Podcast calm to trial net chivo, Cape open and all of the sponsors. When you support the sponsors through my links, you're supporting the show. I really appreciate that. Alright, let's get back to constants and really dig in.

Unknown Speaker 30:17
And Kp ventures

Scott Benner 30:19
constants, I have to tell you when I said that I didn't know that I have my hand up like I have it on the Bible in a courtroom. I just went, when I heard dry mouth, I thought, oh, like, you know, if people sleep with their mouths open, for instance, a dentist, they'll say that's one way you might end up with getting a cavity because the bacteria and you feed it with it anyway, but but I didn't know you were gonna sell that. That's insane. Yeah, wow. No kidding. So they just took out your teeth and set you up with dentures.

Constance West 30:52
How old? Were you? 21

Scott Benner 30:55
Happy birthday. So yeah, a lot of people go out drinking, or some people get dentures. So I'm going to stop for a second before we get to the other issues and ask you buy them five years ago, 21 years old? What's the psychological impact on you? With all this? Like, how do you handle this?

Constance West 31:15
You know, it's it's just the card that I was given. I there's no way to handle it. I can't stop and break down. I do stop and break down like when something's really affecting me. I do and I cry and I cry and cry and my poor husband will just sit there and try to help me and he has no idea what to do. And then I get up literally it'll be like okay, I'm done crying now I'll get up and I'm like, Okay, well I got to go on I got to keep doing what I got to do. And that's that's it like there's my motto is like every day gets better like yeah, today right now this feeling shocks. It sucks. But I'm doing things that will have a prolonged effect in my life. And hopefully I won't have to be here forever. And it's it is just kind of like what gets me through the day. I will say you usually ask people if there's any other autoimmune funky stuff going on and families. I'm the only one with anything wrong. I am one of six children. My parents don't have any siblings. Their parents are mostly all dead. But there is nothing autoimmune. Oh, sorry. My great, great grandfather we've learned before he passed away that he had hypothyroidism But it wasn't until like way later in life, he had only been on it for like, two years.

Scott Benner 32:49
Like mental issues even that.

Constance West 32:51
I mean, my dad, um, my dad had dental issues, but his Purdue to a dentist in his 20s leaving, like a needle in his gun. Yeah,

Scott Benner 33:07
okay. Don't say that again. Okay. Look, none of us want you to say a dentist let the needle in your dad's gum again, because that is going to kill everything. That was the chilliest thing anyone's ever said to me on the podcast. I was like, it just ran right up my spine. Okay, all right. Hold on a second. Well, the truth by you really got me with that one. The. The truth is, no one else in your family can have an autoimmune disorder passes because you took them all okay? You literally

Constance West 33:35
literally I joke with people and I'm like, I just want my genetic lottery.

Scott Benner 33:40
You You just you're greedy. And you took every one of them. Okay, so we're left with like, Hey, can I guess was pelvic floor next?

Wow, look at me getting good at this. All right.

Constance West 34:02
Well, I would say no, I would say these things. So I would say pelvic floor dysfunction as long as I can remember is the same as lichens sclerosis, and I'm going to say with Lycan sclerosis, the only way to actually make a current confirmation for Lycan sclerosis is they do a biopsy of the skin tissue which might give you a tingle as well up your spine. So they did want to recently but I have been on topical steroids for that in the area for well over a year and they had me stopped for a few weeks and it came back as contact dermatitis, which is just inflammation of tissue. And it didn't come back as like an fluorosis but with the way that my tissue clinically looks, the doctors like we're just gonna retest in a couple of months. If you can handle being off the steroids and see if it comes back positive because she's like, there's no way this is isn't like in sclerosis. But the only way to like actually get the tissue to kind of go back to its normal is just up the stairway. But let's go back pelvic floor dysfunction, and the lichen sclerosis. So for as long as I can remember I would tear in the genital area and not like real bad. But it would just happen and then it would do a little awkward floor and it heals, it's fine. And pelvic floor dysfunction, I have always had like heavy periods, which is part of the hypertonic pelvic floor. And so basically what it is, is like my pelvic floor muscles, they're a big bowl and they hold like they hold our the uterus and the vagina and then it holds the bladder and everything kind of follow the diaphragm. While mine is literally like above my navel. Basically, like my pelvic floors so far up, it's so tense, it's so far up. And so it's always caused issues for sex, I just didn't know that was a thing. Um, and so two years ago, I out of nowhere got a kidney infection. And I think that kind of threw at all for loop. Because sense getting that kidney infection. And I honestly have no idea where that can even infection came from, I actually think it's from the lakes here. Because I was swimming in the lake a couple of days prior. And I, there was no way that I would have I've never had a kidney infection before. And so I go in, because I started King blood one night, and they do the scan and everything and you're like yeah, kidney infection, and it gets worse and it gets worse because like when you go in with your symptoms, it takes three days, at least for the antibiotics to kick in. And it was over a long weekend. So of course, you can't get into see anybody right away, and the antibiotics weren't working. It's kidney infections are so painful. And then once that was relieved, I always had like, in my urethra would burn, burn, burn, burn. And so I was still having that symptom of this burning urethra on and off. And then I started having cramping. That will literally drop me to the floor. And so I was referred to a euro gynecologist and recipe which is putting just fluid in the bladder to check if there's any tears from the infection and there wasn't and so they kind of just sent me on my merry way. And said, Here, take this medication if you are having the urethra spasming, and it'll be fine. So I dealt with that. Up until last July, so we're talking like a full year.

Scott Benner 38:25
I have a couple of symptoms. So the um, they the steroid medication and the issues with the LS is that internal or external? That's external, external, okay. And the pelvic floor like what are the real world implications of it, like in your day to day life? How does it impact you?

Constance West 38:50
Yeah, so, um, I can't, we can't have sex. I will just have spasming. Again, it'll kind of just like, drop, I kind of have to like, drop whatever I'm doing. It used to literally dragged me to the knees. It doesn't do that anymore. So I have like a team of doctors that we're all kind of like working together, but not in the same clinic. So I'm not actually on the same team. But I I so we had COVID that hit right. And so I went from not seeing my PCP at all. And I couldn't get into an appointment with her like they weren't doing in person appointments, but I had a tear that happened in March of last year. Yeah, March 2020. That lasted all the way till like, middle of June. And I mean, it was pretty deep. It was pretty bad. And like okorafor wasn't working and I call the office and I was like I need to get in, I need to see somebody and I need to see somebody in person because I need somebody to look at this like, this is no longer like it was so hard because it's like, oh, we're in the middle of a pandemic. And the pandemic was so new at that time. But I was like, I cannot do my daily activities of living because it is just so painful. And so I went into my PCP, and she looked at it and she was like, This is not my specialty. And she sent me back to the Europa ecologist. And the euro. gynecologists was asking all these questions and just questions that they hadn't asked before or maybe I wasn't getting the right answers. It's so hard to know which, which it was. And she was like, okay, she looked at everything. And she was like, Oh, my God, this is not my wheelhouse, either, like, I cannot help you here. But I can help you with the like urethral spasming I was complaining of in feeling. And finally, we had we scheduled another follow up appointment. Once I got the confirming diagnosis. She sent me to a VA the general dermatology of general dermatologists,

Unknown Speaker 41:18
which there was,

Constance West 41:21
I had no idea. But the funny thing was like, I went to the original dermatologist, but i three days prior, I had gone to your dermatologist as well, because I had a couple of moles that popped up and were weird. And they were scaring me. So I went into the dermatologist and she didn't look at my bachelor scan at all. And so this virginal dermatologist looked at everything. And she was like, yep, this is like an sclerosis. But the urogynecologist had already started me on, it's helpful. They does all the topical steroids. And we were doing that at that point, because I think it took three weeks to get into her. I had been doing it every day for three weeks, which was too much of it to get a biopsy. So I

Scott Benner 42:10
got a couple of questions. So when you say you can't have sex is that constantly or during flare ups?

Constance West 42:18
I have not had a time that I've not been cleared up.

Scott Benner 42:21
Okay. And so when, when you I'm assuming you've tried sex?

Constance West 42:27
Yeah. And I happen. It's so funny prior to this pelvic floor dysfunction. My husband and my husband had a couple, like long term girlfriends prior to me. Were actually like old, high school sweethearts, just an old story. That takes quite a while to tell. But he had several girlfriends and he was like, I've never not gotten them to orgasm, and I've never I've never gotten the I never orgasm so fast. Because my husband Oh my god, he'll orgasm in two seconds. I'm not kidding you. And he gets fired me. It's the worst thing ever. Especially if I'm trying to enjoy myself. And so we always forget that was something wrong with him. I was like, there's something wrong with you. We need to get you into some sort of therapy. So you're not just going every two seconds.

Scott Benner 43:29
So you're in bed, so you're trying to have intercourse and you're in pain.

Constance West 43:33
I'm in pain. Yeah.

Scott Benner 43:35
But the implication to him is there's like 7000 vaginas on him. Right? And yeah, doing the hard work. And so he Yeah, like, okay, so yeah, I'm gonna have to beat this out, I imagine but so you're like amazing stuff, right? No,

Constance West 43:57
no, it's it's funny. I I don't know if this when I was 18. I was doing my CNA classes. And the first time I actually ever saw a penis was when they were shoving or urethral catheter in. JOHN at one of our major hospitals, and I was like, gross. So penises really grossed me out? Honestly, I'm gonna be honest.

Scott Benner 44:17
We did. Let me ask a serious question on that is Was it hard to date for you because of all of your issues.

Constance West 44:26
I'm hard today I've never been one to like date date. If I went on a date with the boy it was because I already liked them and saw something in them that I thought would be acceptable as a boyfriend. I had one relationship that lasted for years. And then the one previous to Kyle was a year and a half and he ended up ghosting me just out of nowhere. And then I've been with Kyle for three years.

Scott Benner 44:58
So what do you do? Do you just take One for the team once in a while. Yep, sure to I'm sorry.

Constance West 45:05
Yeah, I mean, he tries god he tries as hard as you possibly can. And so a week, we can have sex. I don't want let's see. How do I explain this?

Scott Benner 45:21
I don't know. But go ahead and try.

Constance West 45:23
Yeah. Um and I have no qualms about explaining it, but um, let's see, okay, so things will get there will be touching and touching is sometimes okay. I really have to be in the right mindset. I have to be calm. They gave me some muscle relaxers that are really helpful. So it's not like we can't just out of nowhere spontaneously have sex. I have to take these muscle relaxers. 45 minutes to an hour beforehand, which does not work very well with my husband when he wants to have sex. I'm like no, let's do it. Now

Scott Benner 45:59
does it turn into cardio you take the muscle relaxers then run away from him for 45 minutes

Constance West 46:06
but the muscle relaxer really does help and so we'll take them a little slow relaxer and kind of will help relax everything though he will touch me and try to get and like It'll take a while to get the juices flowing. How would you say yeah imaginal juice flowing?

Scott Benner 46:30
I think if I said that I don't think it would go over well but I'm sure it's fine.

Constance West 46:37
To get the juices flowing I want that if we're okay then he'll try to penetrate if you want to get technical and if he doesn't come within 10 seconds and my body will actually reject him like my muscles will reject him out of my body

Scott Benner 46:57
No kidding

Constance West 46:58
no not kidding at all. That happens all the time.

Scott Benner 47:02
Okay hold on do you I mean asking because of the part of the country you're in I guess more than anything Have you tried like drugs like recreational drugs?

Constance West 47:15
No I don't I don't

Scott Benner 47:18
you don't seem like a person who would try that which is but I wanted to see if it was bad enough that I honestly thought to myself that was going to be your answer but but I just thought maybe it's been Have you ever talked about it

Constance West 47:32
like in therapy know like

Scott Benner 47:34
between the two of you like maybe we should try smoking weed and doing this or something like that.

Constance West 47:40
Oh, I mean my husband's like sweet I just don't i well i could get drug tested at anytime I'm in nursing school and I'm also working

Scott Benner 47:48
so so not that I'm saying to do this but has does alcohol have any impact on it?

Constance West 47:53
Um, so I can't drink alcohol either because I also have chronic yeast infection.

Scott Benner 47:59
Of course you do right? No, I don't know why I didn't just assume that I'm sorry. I'm

Constance West 48:04
literally chronic from well before even being diagnosed with the diabetes I can remember having yeast infections and they've been ongoing since so they're it's like this with my my, which was the reason I emailed you and asked if you wanted to do a after dark episodes. So like I have the chronic yeast infections that have never gone away. I have dumped every infectious disease doctor I've seen are still trying to figure it out. And then I have the lichen sclerosis, which came back as contact dermatitis, which is its own thing and then the pelvic floor dysfunction. When I have a seizure when I have a tear, which is another word for it because fissures and tears The use gets inside it makes it more inflamed which sets off my pelvic floor.

Scott Benner 48:51
Wow. All right, well, well, this is a this is an after dark so I'm gonna just I'm gonna ask you another question. That seems like an obvious question. Pretty sure I know the answer to but I feel like for we need to understand fully doing. No, I wouldn't either. By the way, if I was you just I'm just I was just like I would ask. Are your hands super soft? How does this work?

Constance West 49:20
My husband's just really patient.

Scott Benner 49:21
Well, no, he's the same. I'm pretty certain. By the way,

Constance West 49:28
it's so funny. It's so funny. Our girl dog Lucy she's in heat right now. And she told me as I was leaving for work yesterday, he was like she got on top. Alison started helping him the other day. And I was like, same thing when I'm trying to have my period. I just want to help you. I was like, it's the hormones that are released me. I was like, yeah, it's done, and I just left.

Scott Benner 49:50
None of this impacts your desire, though. I mean, I'm assumed like, Oh,

Constance West 49:55
no, I love my husband. I want to have fun with my husband. He Doesn't my brain doesn't work with my vagina?

Scott Benner 50:03
Do you do stuff to? I'm just gonna ask you like, do you do things that, like, do you, like, bring like the back of your knee into it? Or like what do you do to like any? I don't even know what to say I'm a bit of a loss here. I only know the classic ways to do it. So, but do you see what I'm saying? Do you guys get like try to figure something out? Or do you I mean,

Constance West 50:30
we've definitely definitely tried so I, I, in October, I had surgery, they put in a neuro and nerve stimulator of my sacral nerve. So like usually they'll do this for people because pelvic floor dysfunction is usually usually happens after pregnancy, right? And it usually happens in the elderly population. And again, that's usually usually hypo tronic muscles where they are have just been too stressed either due to age or pregnancy that they are not tight and mine are too tight. So if you were to like, if we were to turn on the video, I could show you like usually your, your pelvic floor muscles actually sit in your pelvic floor where you're like, you know, your legs Connect, you know, it says they're mine. It's above like my belly button and basically, and so the pelvic floor muscles and move kind of like all of the organs up with it. You could say, constants are we had

Scott Benner 51:34
when you said yeah, if we had the video on you could show me You met with your hands that you were gonna show me? vagina, right?

Constance West 51:40
No, I don't want. You don't want to. Believe me? I've never personally seen it. But I'm sure you don't want

Scott Benner 51:49
to tell you like because if that's where you were going, I've recorded like 600 of these and that would have been the first time somebody said, if you put this on and show you my genitals. I knew you meant like you were making some hand. Just Yeah, yeah.

Constance West 52:06
Anyways, yeah, we did this like diary log or me peeing, and like the spasming I was feeling. And at that time in October, I was paying like 16 times a day, I'm in my first semester of nursing school, I'm driving three hours, at least every week I I work a very high demand job that I have on my feet for 12 hours, three days a week right now. And I'm going to be a bedside nurse, you know, you're on your feet for three shifts for 12 hours a week, once I'm done with nursing school, going to the bathroom 16 times a day, is not effective. To get any of that done. Like let me just be clear, you're in the bathroom. your urethra is spasming as you're trying to stop peeing, and then your pelvic floor contracts. And it's just you end up sweating sitting there on the toilet. Like you're, you've just eaten really bad takeout? Like, right 16 times a day. And time today,

Scott Benner 53:12
I want to tell you something. There's something interesting going on about you, right? Because at your core, you're kind of a proper young lady. And no, but no, no, not hold on, hold on. But you have so many things going on. You really don't have the time to be proper. And you've read right, but I think you have it. Do you think if none of this had happened to you? Would you be a little bit of a teetotaller? Or do you think you'd be going crazy? What do you think your core feeling is about life?

Constance West 53:42
My core feeling about life? I think my sister's kind of like me. Yeah, I think I would kind of be the same thing. I just have a lot less

Scott Benner 53:50
going on. Yeah, no, but your attitude is impeccable. By the way. Like I seriously, you have so many things going on with you that if it was the 1600s people would think you were a witch and put you on trial. Like oh, yeah, sure. 100% you'd be at a witch trial. So she makes men's Pierce's explode. I think that alone would have gotten you burned. So um, but you have an amazing attitude, like even wanting to like tell somebody about this is is really lovely. Because you're not the only one I would imagine. And I can't imagine that a lot of people are excited to run around and tell these stories. And your husband is obviously a person who loves you, which is that I mean, that's lovely in and of itself. Especially when I asked about the mouse stuff and you said you because I just assumed that's how you guys got through.

Constance West 54:47
Now, you know, he'll ask me and I'm like, Nope, not today.

Scott Benner 54:50
Yeah, he's a boy. We asked constantly. It's literally like one of our headcount. I was at a funeral once and that's what I was wondering about. So Oh, God. We're tortured.

Constance West 55:02
No, I'm like you have lefty, like, go hang out with lefty.

Scott Benner 55:08
Do you make most of the money?

Constance West 55:10
I'm not currently he does, but I will in a year,

Scott Benner 55:14
I was just thinking like, maybe he was like, all right, but such a good. What made you want to be a nurse, I'm assuming having scads of medical issues.

Constance West 55:25
Oh, it was definitely the care that I got in the hospital when I was diagnosed because the diabetes educators that I had, as well as until I was 18, with the care that I had at the hospital was diabetes educators. So they were just wonderful. And I hated my endo that whole entire five years, I had the same endo minus the times that she was pregnant, and she was pregnant, like three or four times when she was on leave, but um, my diabetes educators were just wonderful. And I find as a type one diabetic, at my core, because if you really were to boil me down to one disease, I would just say type one diabetes, because it's the it's my longest lasting disease, it's not going anywhere, it just, it can affect everything else. And I just want to be helpful to future diabetics and families. And I, I think that's why I enjoy listening to your podcast so much is because we speak so much truth. And like, diabetes educators, and a lot of times it's because I can't speak the truth of what diabetes is actually like, and the peaks and valleys. But just being that person and knowing that these families were going through such a, it's traumatic, it's shown dramatic having diabetes on a daily basis, I feel like it's traumatic. Some days, not every day, but it can be dramatic, and just having somebody to be like, Okay, this is what we're seeing, this is what we're doing. what's not working, because we would do that with my, with my certified diabetes educators, the nurses, because they had had diabetes for forever. One of them Her name was Barb, she's still actually at the hospital. And she was diagnosed at the age of four, you know, and so if we were ever having any problems, we would call her not the hospital and say, Hey, this is what what's going on? What's what what do you think? What should we do? And it's just, and the only way to be a certified diabetes educator is through being a nurse or through be a nutritionist. And I've taken nutrition classes and classes, I could have become a nutritionist, but in case something were to ever happen to my husband, and I was a single mom, and I needed to find work as a nurse, you can find more work than as a nutritionist, so I went with nursing. Hmm,

Scott Benner 58:01
good for you. That's really I mean, it's the whole stories mean, it's terrible. Obviously, I have nothing but compassion for you. But the way you handle is is astonishing. Why do you think why do you think you're able to do that? It's a question nobody ever is able to answer but

Constance West 58:21
yeah, and doctors asked me that too. They're like you can't be living in a body with all this happening going on at once. I'm like the head guy. Can I share Yeah, I'm doing it and I'm doing everything else that everybody else is doing so I can do it and I am during it. It doesn't mean I don't have times that stop me and I have to kind of readjust what I'm doing. But I I honestly think it's just like, I lived for so long with the diabetes know when I was diagnosed, my thought was okay, I'm just gonna make it to 18 you know, like we were given basically, and this is 2008 I don't know why the doctors did this, but they were like, you're probably gonna end up dead sooner than later. And again, yeah, yeah, they they gave my parents a max of 30 is what they said. Really? Really? Yeah. I don't know why.

Scott Benner 59:23
stoned out of their mind they can't think you guys gonna stop smoking the weed long enough up there right?

Unknown Speaker 59:29
Do you know Ben?

Scott Benner 59:31
What's now that didn't stop anybody in the upper northwest to be in the elite? Do you think that we've been illegal stop people from smoking weed?

Constance West 59:40
Oh, no, no, no, no. Everybody's smoking and now anywhere you go.

Scott Benner 59:45
Just it's it's just everywhere. It's a cloud of wonder like well, you guys should be able to get decent stuff. It shouldn't be that bad. No, I mean, it's just listen I've spoken to a lot of people. And I don't think that people have a good attitude, or what would be perceived as a bad attitude on purpose. I don't think anyone's reaction is mindful. Meaning I don't think something happens to somebody and then they go, Well, let me decide, will I be upbeat and cheery about this? Or am I gonna act like a prick? Like, that's not what happens, like, whatever your reaction is, is your reaction. But I mean, were your parents like, fantastic parents? Did you have like an I deal with childhood until you were 13? Or do you just have is this just a good disposition? Is there anybody in your family that has your disposition that you could point to? No, you're just gonna live your life like this is it? This is what I get. Yeah.

Constance West 1:00:48
And I think again, diabetes, because like, I could literally die in the middle of the night, and all blood sugar I have my ANC just came back the other day, 6.0 I am flying, you know, but something could happen, you know, my site could fail. And before I wake up, I die from some, you know, I can get I live my life. I was like, I could get into my car, and I could freakin die because some moron hits me, you know, and that's just kind of like, I'm going to do the best that I can. I'll be here like, and it is what it is like, diabetes is not going to stop me. And there have been several people who throughout my life have tried to stop me because of my diabetes, mainly educators and telling me, I wasn't worth the time. I wasn't going to make it. I was too dumb. And it just wasn't worth their time because it would take too long and I wasn't worth it.

Scott Benner 1:01:41
causes. I've been speaking to you for 57 minutes. Now you've not come off as dumb once. Why would someone think that about you?

Constance West 1:01:49
I'm probably because I was 13 at the time. And all 13 year old. Are

Scott Benner 1:01:55
you going to? Where was your endocrinologist in the middle of the woods or something? What? Where did you? I mean, I watched Grey's Anatomy. So I think of Seattle as being the hub of good health care. Is that much.

Constance West 1:02:08
I mean? I have I could. I could talk to you for

Scott Benner 1:02:17
this. I'm laughing at myself, because I have co mingled a television show with reality in my mind. I was out in Seattle recently. And no, yeah, right. And then I was disturbed to find that I think Seattle grace from Grey's Anatomy is actually a set in Los Angeles and not

Constance West 1:02:39
in Seattle.

Scott Benner 1:02:40
So people were like, do you want to see the Space Needle? I'm like, No, we're Seattle. Grace.

Constance West 1:02:46
No, it's not a real hospital at all.

Scott Benner 1:02:48
Yeah, I found out It's okay. I was actually so busy when I was there. timewise I didn't see anything. Well, that's unfortunate. Yeah, I saw that mountain that finally. Yeah, I love the there's a I think I've mentioned in another episode, but there's a colloquial phrase that people use around there. They say when the mountain is out. It doesn't rain here. Yes. But when the mountain is out, isn't actually a sensible statement. The mountains always out. It's when the sky is clear. But yeah, the idea and it was lovely. Like the first person that SAW said it to me, I thought like, Oh, that's nice. They don't understand English. And then that's fine. But then when the fifth and sixth and 20th person said, oh, wait till the mountain comes out, so you can see it. I was like, Alright, this is the thing these people say. Did you see it? Did you see Mount Rainier? One day? I got a really great look at it. Yes. Is it not breathtaking? It's astonishing. And I will y'all see

Constance West 1:03:47
the mountains are like dirt compared to us. So it's amazing.

Scott Benner 1:03:52
I think the most fascinating aspect of it was that we arrived on a Saturday night. And I remember being a traffic light and it was late at night. Don't get me wrong, like one o'clock in the morning, right? So it my time so it was probably 10 or 11 your time. I was exhausted, we were sitting at a traffic light. Can't see anything, obviously because it's dark. The next day you're out I'm sitting at that traffic light again, I don't see anything. Three and four days go by. And finally we're at this place and I get a text from from Chris, the guy that put us up for the first week for put me in coal up and then coal moved on to housing, but he said Oh, when you get out of there today, you're going to see the mountain and I was like, Oh, great. And what astonished me was that in the 35 minute ride back to Chris's home from where we were, the mountain was almost always visible. All I could think is we had taken this ride about a dozen times already. And I had no inclination of where the mountain was. And that was fascinating to me. Like just to turn a corner and be like, Whoa, that was not They're yesterday so I get this thing I do get the saying when the mountains out because it feels like it just decides to appear. Literally Yeah, it's very cool. There really is. Anyway Is there anything else wrong with you that we didn't talk about?

Constance West 1:05:20
My husband has bipolar

Scott Benner 1:05:23
that's not that's not you though.

Constance West 1:05:25
No, but I mean I have a sunny disposition and you're in your thought process and others would not Um, but yeah I it's funny because his his you know, like a chronic illness and we just got the diagnosis in like a finally, we've been dealing with really bad severe depression. And I don't get me wrong as a teenager, I was definitely like, defiant, I would make my mom mad because I would give myself and for for my genes or your on my blood sugar would stay around to 10. And I wouldn't care and I wouldn't, I wouldn't, I would not check my blood sugar, but I would take my insulin and you know, I kind of was just a little different with it. I don't be on it. I still don't want it, but I deal with it. And then one day, I was like, Okay, well, this is not getting me anywhere, I'd better just take care of it. And so you know, my, my definite motto is even with everything that is going on. And even though my pelvic floor socks and my skin is caring, and I have a yeast issue that nobody can freakin figure out and get rid of. Every day gets better. And that literally is my motto, like, everything sucked right now. And it might suck this second. But tomorrow is a new day. And tomorrow, it'll get a little bit better. And I'll look back in 10 years and be like, Wow, look at how far I've come. Because even just like the 13 years of diabetes, it's come so far, the fact that I have an insulin pump on my head, and a continuous glucose monitor that works and works well. is just amazing. And my husband is so early in his diagnosis with his bipolar, he's just like, I don't know, I can't I can't function. I can't do anything. And like, it's so like, both chronic illnesses, right? This is not going to go away, we have to figure out how to deal with it. And I I just take on that motto and he has not yet. So hopefully one day he will. But I just I think it you really do just have to like, be honest with yourself and tell yourself that like, this really sucks. And I don't have answers right now, I don't have a way that is conductive to actually having sex that will work with my husband, but maybe in a couple of years, everything will slow down and hopefully it will be able to have sex and you know, it kind of is what it is and possibly having the new diagnosis of pcls. And which I'll find out today. It's just like, well, I just got from it. Another goddamn thing. Another sorry. I don't mean to say that like that. But like, you know, one more thing, like and we had, we had our anniversary the other day and our dating anniversary, and I had that day gotten back the high testosterone. And I was like, I don't even feel like a woman anymore. Like I can't have sex. I now have more testosterone than I have estrogen in my body. I've already had an IUD, like that was one of the immediate things I did when we got together. I was like we're not having children until if we can even have children. I was like we're not having children until I'm done with nursing school. So we're going and getting an IUD and going off of oral birth control. And the main factor was like I'm allergic to latex and non latex condoms are so expensive when we were trying to have sex. And so I got an IUD and even with the IUD, and my testosterone is like through the roof, and I'm like, oh, when is this ever going to just stop? And I sat there I was all pretty. I was making for the first time for a year and I started bawling at dinner. I mean, just reached over and grabbed my hand and he just sat there and was quiet. And I had my little moment and I wipe my eyes and I was like All right. Let's change the conversation.

Scott Benner 1:09:48
What were some of the things that led you thinking you might have PCs?

Constance West 1:09:52
Oh, I'm in May my I had bilateral upper and lower. Like it feels kind of like an electrical socket is hooked up to my nerves. That just happened literally overnight. It was the, it was the legs one night, and then the following morning it was my arms. And then June 6, I was at work and I was charting and my middle finger became completely immobilized. And then it spread to all of my fingers on my right hand, and then my wrist got contracted in a very weird position of what kind of like it was sitting on a mouse as well. And it got stuck like that. And we went to the end, because it at that point, I had to leave work, but nothing was resolving it. I couldn't move it. I could not move my fingers. I could not move my hand by myself. I could not move my wrist, but I couldn't move my elbow on that right side. And so they they did an extra CT scan, they did an MRI and they were like we can't figure this out. Here's a brace. Here's a sling, go home and follow up with these doctors. So one of them was a neurologist. And now I forget the question.

Scott Benner 1:11:11
I was wondering about, like what you saw about PCs? Like what made you? Oh,

Constance West 1:11:16
yes. So the neurologist was like, literally spent an hour and a half in the room with me a couple weeks ago. And was like I think it could be sleep apnea. He was like, it could be neuropathy. It could be an eye switch. It was not a nice thing got nothing against Ms. But we don't need another autoimmune disease. Because pcls because of the fatigue you always had. And I say sleep apnea. Yeah, you did. Okay, Batman. Okay. All right. Oh, he ran, he ran a bunch of labs, and the testosterone came back high and said, Here you go go to a gynecologist.

Scott Benner 1:12:00
I live one last question for you, then I can let you go. Oh, you're fine. So I am wondering, does How do I how do I wonder this? Your husband? Has he been depressed? Most of the time you knew him? You just have a diagnosis of bipolar now.

Constance West 1:12:25
How husband has been clinically depressed for my god health? 15.

Scott Benner 1:12:34
So do you. Okay, that's fair. So do you? How does that how do you make a decision to be with a depressed person? Is it is it? You love them before? You know? So then? Or is it? Is there any piece of like you feeling like, there's so much wrong with me? That and he's accepting of that I need to be accepting of his thing. Like, what's that dynamic? Like? Does that make sense? Question?

Constance West 1:13:01
So yeah, he, we were together like our freshman year of high school, and then his parents are going through a nasty divorce. His mom moved to Indiana with him and the rest of the kids, right? So they were there for 10 years, and we've been best friends. You know, like, we ended our relationship, fine, you know, whatever, we were 14, um, and we've just been best friends. And we'll talk to each other throughout it. And like, he would always come to me with things that were going wrong with in his relationships. And I'd be like, dude, you gotta like, fix yourself, like, you're kind of the problem. And eventually, his girlfriend's would ditch him. And his, so that went on for 10 years, forever. And then, my parents left for Indiana, 10 years ago, because of my dad's job. And my boyfriend, previous to Kyle just ditch. He just, like stopped responding to any of my text messages. And I couldn't get ahold of them. He's alive. He still friends with my sister's husband. But just completely dropped off the face of the planet for me. And my husband, I was talking to my, my husband now. And I was like, I don't know what I'm gonna do. Like, my parents are literally leaving in a week and like, I have no place to live. And he was like, I'll just come be with you. I was like, Alright, so I'm on an airplane, and we drove home. And we've been together since but like, I knew he had depression. I didn't know the extent of it. Right? Right. Because like if you're talking to somebody over text message, it's completely different than active living day to day, you know, and so the first he came in June, that year, three years ago, and so our our winter here, good stuff. So bad, like, you literally will wake up the sun doesn't rise until like 9am. I feel like probably not right but and then it's gone. You know, like we have a couple of hours of overcast. And so it got really bad and I would come home I was in school, I was finishing up my prereqs for nursing, I was still working full time at that time. So I was working three hour till 312 hour shifts, and I would come home and he was working at Lowe's then and he would just be in bed, and he hadn't moved, if he wasn't working or if he had gone to work, he would come home and and be like, go back to bed. And I was like this is not acceptable. And I was like if you want to stay with me, you need to go get help. Like you need to go to the doctor and either get some sort of pharmaceutical help. And you need to get a therapist and you need to start working through you're like this is not acceptable. This is not how a normal person lives their life. And it's not it's not okay, like I cannot be at school, I cannot be at work worried if you've even gotten up to like, eat today, basically. And I do like all the cooking and all of the cleaning and the making of the food just because I'm so particular with what I eat, and I need to know the amount of insulin I need to take, you know. And so he was like, fine, and then he got on meds. So he's been on meds for three years, but I just have continuously gotten worse and worse. And even with all the medications and medication changes. And he started seeing a psychiatrist who was like, Yeah, I think this might just be your expectations with how you thought your life would be at this point are not how they are. I see this a lot and men your age, try this medication. And it just at that point, it's like I do I love him, I adore him and it's when he is okay and his mood is stable. He's totally fine. It's it's the depressive aspect of like, he gets so deep, so deep. I don't even know how to explain it. But it's just like, and for me with diabetes and the lifelong illness, it's so hard to understand that because I'm like, you just need to get up and go freakin shower, go shower. Like just do a normal thing. And I mean, I am going to be a nurse, I understand the mechanics and the science behind what's going on, but actually living with it. Right? Right. It's so hard. Like I literally it's a hormone thing. It's an imbalance man,

that's what I tell him all the time. Like, what would you do if I didn't take care of my diabetes, especially when things get bad? I'm like, if I didn't take care of my diabetes, and I had to have worst case scenario, something amputated. You wouldn't want to be with me. You don't want to take care of me. Like you wouldn't. You would end up regretting being with me at some point, whether it was a decade or two or three, you know, I'm like you are doing the same thing. You're not taking care of your illness and you're not taking care of yourself and you're not doing justice to our marriage over to me and he that really resonates with him and he's like, Okay, Okay, I get it. I see it. And so

Scott Benner 1:18:27
Huh, does that does that get him to try when he's feeling

Constance West 1:18:32
Yeah, yeah. And I mean it will make him It will make him cry. Like he. I think that's like my big gun is like Hey, dude, like come on. You see how hard it is. And I'm not saying that like you're bipolar isn't hard. But like you need to get out of bed. You I know it's hard to get it to an extent but like, we have a life to live and I'm not going to live my life like this. So you need to so no

Scott Benner 1:19:03
matter what's going on for you or for him, you want to do you want to just whatever the best foot is you want to put it forward.

Constance West 1:19:12
Yeah. And my my husband will say if you were tasked him me at my core, you would just say she just never stops moving. Never. She's just go go go but that's just if I stopped literally again I would totally for 20 hours. I wouldn't move and he he will he'll be like can you just slow down for 10 seconds just slow down. Just Just be here with me and I'm like fine.

Scott Benner 1:19:43
You have done something here today that I appreciate very much. Honestly being this like, clear about all the different issues. Is is really is a lovely thing you've done for Bayliss. I

Constance West 1:19:58
do. I do want to say Lightroom fluorosis is actually I asked the I asked the virginal dermatologist I asked her what population of people with like authorises, do you see, I have diabetes and she told me 90% whether that's type one or type two, she goes, usually it's later in life, it'll pop up, and they will get it. Because again, it's an autoimmune issue if the immune cells are attacking the skin, and it's, it's crazy. And so, if you're going to a dermatologist, women with Type One Diabetes, if you have children, you probably don't have to worry about it. Please have them look at your skin, your vaginal skin, you have a higher rate of having like an sclerosis, because you have type one diabetes, and then lichen sclerosis, if it goes unchecked, and we're talking like 2030 years, if it goes on without being treated, you have a higher chance of getting squamous cell carcinoma and it's so hard to treat. So please just have your dermatologist look at your vagina. Yeah,

Scott Benner 1:21:09
that's it. That's our takeaway. Have your dermatologist look at your vagina. That's definitely Yeah, 100% i think that i think that's,

Constance West 1:21:16
um, get a biopsy, please get a biopsy first. Don't start treatment without a biopsy. that that would be a two.

Scott Benner 1:21:22
All right. So listen, next time anyone calls with one of these ideas? We can't do it this early in the morning. I just as we're talking, I was like, I looked up at the clock. And I'm like, it's not even 9am yet at one point, I'm thinking. But it's important to talk about and I again, I really do appreciate you doing this. I want to wish you luck at your doctor's appointment today. I hope you hear good news.

Constance West 1:21:50
Yeah. I mean, it's pretty definitive that like, I've had ultrasounds before and I do have this better on my own my ovaries at all time. So it is just like how do I how will be treated information.

Scott Benner 1:22:08
All right. Well, I hope you get good answers. And I really appreciate you doing this. If you

Constance West 1:22:13
Well, thank you.

Scott Benner 1:22:14
Thank you for everything that you do. Oh, please. If you thank me, I'm gonna be upset. It's okay. You don't need to thank me or anyone else by the way. You have a pass on on needing to thank people you've got enough going on that you don't even care about me. That's fascinating. Like it really is something. Your parents still in Indiana.

Constance West 1:22:34
Yeah, they're still in Indiana. They're still there. Gotcha.

Scott Benner 1:22:37
Okay, so your your update Yo, by the way. Is your vitamin D

Constance West 1:22:42
low. No, that was checked you vitamin D is fine. Interesting. Of all the things. No, why not? Well, I've been taking vitamin D for since we moved here. Yeah, yeah, I've always taken it. There was just something that they're like, Hey, we tell people when they move here, you take vitamin D. That'd be 12. So it's just something that is part of my vitamins.

Scott Benner 1:23:02
I take it myself. A huge thank you to one of today's sponsors. g Vogue glucagon. Find out more about chivo Kibo pen at G Vogue glucagon.com forward slash juice box. you spell that GVOKEGL Uc ag o n.com. forward slash juice box. also want to thank trialnet for being a sponsor of today's episode, go to trial net.org forward slash juicebox. To get started, don't forget to tell them that the Juicebox Podcast sent you. Thank you so much for listening. I'll be back soon with another episode of the Juicebox Podcast.