PMDD Awareness with Marybeth Bohn: Part 3

Continuing our talk with Mary Beth Bohn. :) YouTube link: https://www.youtube.com/watch?v=K_SlnEvCiRE&t=2s

Take Aways

• Therapies that may help: ACT, EMDR, or hypnotherapy.
• Various dietary supplements have helped.
• Lifestyle changes can improve (meaning decrease) pmdd symptoms.
• REMEMBER: TRIAL AND ERROR IS IMPORTANT. WHAT HAS WORKED FOR SOMEONE ELSE MAY OR MAY NOT HELP YOU.
• Some memories may show up only during the luteal phase. More research is needed, but pmdd can affect memory.
• Reproductive hormones are STEROIDS. Steroids affect the brain a lot. 
• Women with pmdd should consider limiting or avoiding steroids due to the likelihood of sensitivity.
• Both Christina and Heidi have had experiences of their memory being affected during luteal phase.
• The menstrual cycle ought to be the 5th vital sign for women of that age.
• Christina's Questions: When was your last period? When are you expecting your next period? What is "PMS" like for you? 
• If you are concerned that a friend or loved one may have pmdd or pme, ask them Christina's three questions listed above. This may help decrease the time it takes to figure out what is going on for them.
• Possible indicators that you have pmdd or pme: having an big argument with a spouse monthly, wanting to quit your job (or actually quitting) monthly,  or being impatient with your children more so during PMS timing. 
• You may not recognize these as related to your period. Start tracking. If something like the things listed above happen periodically and you start your period the next day, you likely have some premenstrual exacerbation or premenstrual dysphoric disorder. 
• PMS does not last 7 days. If your PMS is lasting more than a few days, you likely experience premenstrual exacerbation of a different disorder/health issue OR have pmdd.
• Histamines can influence the severity of premenstrual symptoms.
• There are many ways to help yourself discussed throughout this episode and specifically around 36:00.
• There are ways to help your loved one if you suspect they have pmdd or pme. Listen around 37:00.
• "Awareness can reduce the average length of time to get a diagnosis from 12 years to a matter of a few months." -IAPMD.org
• Consider attending the Christina Bohn Memorial 5K in Columbia, MO this October. Details here: https://runsignup.com/Race/MO/Columbia/ChristinaBohnMemorial5KforPMDDAwareness

Want more support? ❤️Click here to talk with me. I'm currently offering a free 20 minute consultation call to help you get clear on where you are and how to get to a better place. 

Free resources:

• Heidi's website
• Heidi's YouTube

Music 

• Music- Island Breeze by Surf House Productions | https://surf-house-productions.bandcamp.com 
• Music promoted by https://www.free-stock-music.com

Transcript

PMDD Awareness with Mary Beth Bohn: Part 3

[00:00:00] Hello, this is the Living Well with PMDD podcast. I'm your host, Heidi Bradford, certified life coach, mom of five and PMDD Survivor. Happy to have you here. This podcast is for informational and educational purposes only, and should not be considered health advice.

There are also other benefits from acceptance and commitment therapy. That's a CT.

Mm-hmm. EMDR is eye movement desensitization and reprocessing. And then there's hypnotherapy. Now, EMDR Christina went to that in the last two months of her life. And at this point now, she's no longer driving so we would take her to her therapy. Either Steve or I would wait in the car for her. When I was in the car waiting, then she'd come out and she'd have tears, stain cheeks. I never wanted to ask, and pry about anything. But then one day she said what she was having [00:01:00] therapy for.

So they thought, oh, here's my chance. And I asked her, I said, do you ever talk about your first and fourth grade memories? And she said, I don't know what you're talking about. Now, I probably ought to share this because recalling cringey memories is something that is not exclusive to Christina. I didn't make sense of these memories until we learned about PMDD.

This might help people who are listening to know that your reproductive hormones are steroids. Now, steroids can do a number on your brain. So imagine now it's steroids on the brain. Some people are very, very sensitive and they found that they're even sensitive to prescription steroids, oral or shots. However they're using the steroid, they can be very sensitive and it can make them emotional or irritable.

In Christina's case, in high school, she was going to compete to go to state as a soloist. Her choir director heard the nasally tone in her voice and she said, oh, you're congested.

[00:02:00] Here's the trick. And this is a Friday afternoon. She said, you call your doctor, get a prescription for a steroid. It'll clear you right up. So we hustled that afternoon, we called the doctor's office, ran over, got the prescription, went to the pharmacy, got her the steroid. The next morning we're driving 45 minutes from where we lived in Texas, down to Arlington and I look in the backseat and she's crying. And I asked her, why are you crying? And she said, in first grade I put a paper in the wrong basket. And in fourth grade, a girl made a funny face at me in math when I gave an answer. And she's a puddle of tears in the backseat of the car. Now, that was 2006 or 2007.

I remember asking her, you know, why are we dredging the bottom of the ocean when you're just minutes away from competing? We don't have time for tears right now. Why now? And she could not explain it.

Then of course, I'm trying to comfort her. [00:03:00] Reason with her on why this is over and out, and she's a good student and her school teacher doesn't even remember that she put maybe a handwriting assignment in the wrong basket. You know, she got good grades. Why now?

Well, now fast forward to the year 2020 when she came home to us on Halloween 2020, and then what I would see almost every month, but I'm not realizing the cyclical nature is she's crying about first and fourth grade memories still. It wouldn't be until July when we figure out that she had PMDD.

Then here I am reading about the recall of the cringey memories, the recall of traumatic memories for her, those were her little t traumas apparently. And they got shoved in the trauma part of her brain and would come out in that luteal phase. And she'd cry and cry. I always was puzzled because the girls would [00:04:00] download their days at dinner and before family prayer at night.

All through dinner, both of them would tell us everything about their days at school and then before family prayer, another 45 minutes to an hour would be of them just telling us all their stuff. And so I thought, how did she not ever process those two memories? I was puzzled by that. But we never got to the bottom of it.

So now here we are in EMDR therapy in September and October of 2021. This is just, in the weeks before she died. She comes out with tears. She volunteers that she was crying about a certain thing that she was talking to her therapist about for EMDR and then I said, do you ever deal with your first and fourth grade memories? And she said, I don't know what you're even talking about.

It had to have been follicular phase that she was in. And not luteal phase, but that her memory. Her memories were actually different. [00:05:00] Yes. Yeah. What would surface exactly. And those only came out of that deep dark spot of her brain in the luteal face before her periods.

Wow. I can relate to that.

Well, I spoke to a researcher who is doing research on the effective sex steroids on the brain, and he was not surprised by that story. Mm-hmm. And the correlation between how she handled or didn't handle well, that one steroid pill back in high school, and who knows, maybe that was a button pusher for PMDD, we'll never know.

But then you can do research on steroid psychosis and it's a thing. For steroid psychosis, you don't know who's gonna draw that short straw and experience that. Mm-hmm. But, um, they, one, the first line of defense would be to wean 'em off the steroid. Mm-hmm. Then the next line would be if they still have the psychosis to try something like Zyprexa an anti-psychotic, and then after that, they don't know how long [00:06:00] you are gonna be stuck in that steroid psychosis if you're sensitive to those steroids that you had in your body.

Isn't that something? And then I saw on one of the social media sites on a platform somebody wrote in on A-P-M-D-D group and she asked the group, do you have a negative reaction that is like PMDD like. If you have a steroid prescription. The different answers that came back used two words. They either used the word crazy or they used the word insane.

So that sensitivity to prescription steroids was very similar to what they experienced with their PMDD experiences every month. Wow. Isn't that a, wow. I hope that didn't go too far in the weeds, but to me that is so telling. Yes. So our sex hormones are steroids. Yes.

Progesterone and estrogen, like estradiol and mm-hmm. Testosterone. Yeah, all of it. Yeah. The whole enchilada.

By the time they make up to your brain, it's really metabolites of them interacting [00:07:00] in your brain. I'm not a brain specialist, so that's as far as I can go before I embarrass myself.

So, you know, I don't wanna do that. But generally as lay people, we can understand that, that, um, as our body is going through these processes, that our reproductive hormones are steroids and we'll get to the menstrual cycle at fifth Vital sign in just a second.

But these forms of therapy can be very helpful for some people and some really get really good results with hypnotherapy.

Then the different dietary supplements, you wouldn't take 'em all at once, but you could look into them. But always discuss with your doctor first, because if you're on certain prescriptions, you don't want to have something that is conflicting with that prescription. The lifestyle changes that you've spoken about are critical.

And then for you and for family members, loved ones coworkers, to know whoever's in your life, a friend who is standing by you. Remember, not all treatments work the same for [00:08:00] everybody. So you can't be badgering your loved ones saying, our neighbor does this. Maybe you should try this because everybody's gonna be different.

Trial and error is gonna be happening over and over again generally. Now for some, they're fortunate, something works for them and it works great for a long time. Patience is crucial and you need to keep in mind the real suffering that is being experienced by your daughter your loved one. Your friend who has PMDD.

Yeah, I love that.

An embarrassing moment I had within the past year was that someone asked me how many kids, one of my very good friends has. A friend I go to church with. Mm-hmm. I'm in the young women's presidency and our girls are in there. I told her a number and I would've sworn on my life that that was how many kids she had.

She either called me back or I can't remember the exact process, but she was like, [00:09:00] that's not right. She has another one. And I was like, what are you talking about? I did not believe her. It was still like within hours of me saying, no, this is how many kids she has . It was so weird when I had to look up in our directory on my phone of our church to actually believe her.

Oh. Once I read the names, I was like, how could I forget? Like, how could I forget that, that child so it happens. It's a little scary because it's memory. Right. And so it's humbling for me, but also just to your point, like, please, it's good for people to know.

You get to decide how much they know. Mm-hmm. But also, be understanding. I'm thankful my husband is understanding and if I am ruminating about a certain problem or a certain thing he's learned to recognize she's stuck on this. Help her address it. But [00:10:00] not in a, like, just the logic down doesn't work.

Right. And you don't wanna be treated dismissively either. Like, oh, it's your PMDD time and making it a negative where you suddenly feel like you've gotta hide it, right? Because somebody's being critical of you. 'cause this is a legit medical problem. This is not anybody's fault. So this is no different than having fill in the blank medical problem.

Your family and the people that you know and are with all the time, uh, will be serving you better if they can offer that love and support. Do you know, um, I gave this presentation recently as a wellness presentation to an organization, and afterward the executive director asked me to stay, and I was worried, like, did I say something wrong? You know. But actually it wasn't, it was the most beautiful interaction with her, such a kind and loving woman. She said, I can tell you're a woman of faith. And I said, I am. And she said, I am too [00:11:00] and the whole time we were talking and explaining about PMDD, I kept wishing I could send Christina a message that if I had been her friend, I would've stood by her. I would've had her back. I would've been that person to go to her house and help her kids get ready for bed and make a meal and run the vacuum. I would've been that friend. I just wish I had known her. Isn't that so touching? That is so sweet.

So for those listening who have a loved one with PMDD, you have that opportunity to be that kind of support to them and assure them if you are doing those things, supportive things that you know that they're capable of doing those things.

But just like if they had just broken their leg. You wouldn't want them to be pushing themselves to vacuum or fix a meal. You would want them to rest so they could heal; likewise with PMDD. Yeah.

You want to serve with love and compassion and say, I know you're capable of doing this and you [00:12:00] would make yourself do it if you could, but I want to relieve you so that you can rest and please let me do this 'cause it's easy for me to do it right now and I wanna do it out of love.

The one thing that we don't realize is the miracle of the menstrual cycle and how very powerful it is. The menstrual cycle affects your mental health, it affects your brain, it affects your cardiovascular system, your respiratory system, your nervous system, your digestive system, your skin, your hair, your eyesight, everything.

So when you think about the power of the menstrual cycle, why aren't we always being asked about it?

Can you relate to this: fearing that if your doctor is gonna bring up your period, that they're gonna treat you dismissively? And the next comment will be, oh honey, we all have PMS.

The reason why we have that fear is because it replays over and over frequently in offices. And we see that on the private message boards among those who have PMDD. They were treated dismissively, and then they leave gaslighting [00:13:00] themselves even wondering if what they have is as serious as they're trying to, um, portray to the doctor.

But the menstrual cycle needs to be asked about, 'cause it's a very complex, uh, process that affects your whole body. It needs to be considered as the fifth vital sign when you go to the er. It is often on the patient intake form or when you go to the doctor. But sometimes those in the medical profession might mistakenly think that it only is alluding to whether or not you might be pregnant, but that's not the case.

It could be that if you are showing up with signs of distress in psychosis, or you're feeling suicidal or homicidal or you're self-harming. If you have these distressing symptoms or you're in a psychiatrist's office and you're agitated or angry or very, very tearful, can you imagine how helpful it would be to know when your period is gonna start?

Yes, very. It's extremely helpful and it's not so that you can be treated dismissively. It's so [00:14:00] that you can, the help that you need. The vital signs include blood pressure, body temperature, heart rate, and respiratory rate. Then that fifth one needs to be the menstrual cycle. One of Christina's friends actually had a heart attack related to her menstrual cycle at age 32. Wow. And the doctor knew that was the situation.

Christina gave me some questions and I think it's, yes, it is. It's the next slide. So what can you do as a medical professional? I asked Christine Christina's question. Question. Yes. What happened was on July 16th, 2021, Christina had slipped into what we now know as psychosis. We were calling it delusions and we had to return her to the hospital.

That night. We knelt by our bed to pray like we did every night. With Christina usually sleeping in our room, it'd be the three of us. Then when she was gone, you know, we were always sad and heavy hearted when she was in the hospital. We'd look over at our empty bed in our room and wish she was there with us. 'cause we [00:15:00] always had family prayer and family hugs. I'd always kiss her head right here, just like I had all her life growing up, always on the side of her head and on the side of her sister Marissa's head. Anyway, that night we're sobbing and praying for her and just saying, heavenly father, it's been nine months that she's been here with us. She's married, she has two little kids, none of us know what this is. Her doctors can't figure it out. And we just always wonder, where does she go when she goes into these delusions? What's happening to her? She had such a beautiful life that she worked hard for, you know, she was a diligent student. It didn't come easy.

She studied hard and she did her coursework and everything. So, what is wrong? Can we please have some answers?

I will say all along the line in those nine months with Christina before that, we would liken it to being in a dark tunnel and we were having to feel our way. There were no lights.

But every once in a while we'd get a little light from another doctor recommending like the one doctor that recommended that particular psychiatrist at that hospital. Little lights like [00:16:00] that, that led us along. And we were always so grateful for those little lights. So we would talk about the Lord's hand in Christina's life.

We would, and she received many blessings. And we knew lots of people were praying for her. The relatives on both sides of the family were very attentive and were calling frequently to check in on her, and we're trying to do things for her. So we had those little lights in our dark tunnel. But that night we prayed and it was just like this huge emotional release.

My husband and I, were both crying so hard for our precious daughter, not knowing what happened to her to destroy her life like this. Then I laid my head on my pillow and this voice spoke to my mind. It was the same voice that spoke to me and gave me that impression to leave orthopedics two years before.

Here I am, hearing this voice saying, look up menstrual psychosis. And that was it. So I sat up in bed and I did an internet search, and up [00:17:00] came all these articles about PMDD. I read all night long as if I weren't even tired. There was one article in particular about 17 women who went undiagnosed and untreated for a long time.

Obviously it's a very small study, 17 women. But as I read their quotes, I could hear Christina's voice because she had said many of the same things. Then in the morning, I contacted her psychiatrist. He was thrilled. And he said, oh, we've got to track her periods. I said, wait a minute.

All of a sudden I was gifted with this new download and it was a flashback of seeing Christina updating her period tracking app in the car when I hand ordered her her phone when we pick her up at the hospital. And she said out loud, I'm updating my period tracking app. Well, she just didn't know the day she was admitted because it was always a stressful situation.

I knew her admission dates and her admission dates and her period dates aligned. Sometimes she'd start her period even before she saw a doctor in the morning. Like if we got to the ER in the night and then she'd see the [00:18:00] behavioral health doctors in the morning, sometimes I would get a call saying, she's fine because she had started her period

but nobody's talking about her period. Nobody's asking about it. Nobody knows her period started. It's all aligned. And sometimes it was within a day or two after she's admitted. The most danger for Christina always happened before she bled. So she could be depressed and very tired, anxious, panic, attacky, all of that for a week or two and aches and pains.

But the danger, danger really was before bleeding.

Well, I spoke to Christina then and I said, honey, we know what you have. You have PMDD. I was able to explain it to her 'cause she was clear-minded. 'cause she had started her period in the night. And I asked her what would've helped you? She comprehended all of it and she said, mom, if they had known about PMDD in the ER and when I was in distress from having just attempted or were [00:19:00] delusional, I know I could answer these questions.

When was your last period? When are you expecting your next period? And she would've had her phone at that point. But then she said, and this third question, I could answer it no matter what. What is PMS like for you? She said, I would've said my PMMS is lasting two weeks. Then they could have said if they knew about PMDD. PMS doesn't last two weeks, but there is something called PMDD and if you're up to it, we can talk or we can talk later.

Those three simple questions are not academic sounding at all, are they? No. They're just simple, basic questions that could be asked in a psychiatrist's office, in a school nurse's office, in your family doctor's office, a therapist's office, anywhere Those could be asked, and that question, what is PMS like for you could be enlightening to a doctor who knows about PMDD because all of a sudden if they're thinking, oh, I get, I get so [00:20:00] rageful, I always ask for divorce, or I wanna quit my job, or I run off my friends, or I have these outbursts, or I say hateful things to my kids.

All these things. Well, why don't we start tracking? Let's see what it looks like, and let's see if those symptoms are only happening in that timeframe because I'm thinking PMDD, and it could at least rule it in or rule it out. There's your opportunity right there. Very simple questions. But if you've got patients who are already upset, already not themselves, to get any more complicated than those questions, I think it's too much.

When she gave me these questions, I thought they were brilliant. Yeah, they're very simple, like you said. Mm-hmm. Even in psychosis or not like being totally well, you can answer these. Yeah, exactly.

As an aside, I learned after Christina passed from somebody else, that there are some who have [00:21:00] danger around ovulation, majority have danger around their periods, period, starting, but for some they'll ovulate and then feel suicidal.

And then the symptoms kind of they're not great, they're not pleasant. It's hard, right. Where you feel tired or you feel on edge or whatever. But then danger symptoms could spike again right before your period. It could vary. So that's another reason why you would wanna know when was the last period, when you're expecting the next, so we could see when are you ovulating, when is the period coming?

How does all this fit? Yes. And I am one of those. You raise your hand, tell me, oh, what happens to you?

Before knowing about PMDD mm-hmm. We had noticed that we would have a fight, my husband and I, right before my period. And it got to the point, I, I remember him saying, I think you're gonna start your period in the next few days. When he did that the first time or second time, I was like, oh, that's what you think this is? No, [00:22:00] this really matters, right? Mm-hmm. And, um, mm-hmm. But then with learning about PMDD, I remember he said it again, he was like, Heidi, I think you're gonna feel better.

I think your period's gonna start. I realized he was coming from a loving place. It wasn't like this, can we just get this over with? 'cause it's not even gonna matter. Yes. You know, it wasn't like that. It was mm-hmm. I was like, maybe you're right. Then it changed from maybe you're right to, of course. I couldn't remember what these things that we would argue about. So I remember one time, like, I am gonna remember, I'm going to remember. And it had to do with moving the TV to a different location and after thinking that really wasn't a big deal, but it really was a big deal in that, in that moment.

Sometimes my mind wants me to go to things that really do matter, like a military move that's [00:23:00] upcoming. And I will suddenly be convinced that he and I, we have to decide tonight this solution to this problem that we've had. Right. It's very interesting.

But that is where my mind will go and it wants to have a problem and it really wants to solve the problem. But it's often a problem that's not a real problem so there's not a solution. Or it's a problem that won't be a problem in a few days. Or it's something I can't solve.

Was this before you knew about PMBD? Yes, mm-hmm. And just kind of chalk that up to PMS kind of, yeah. I can remember those conversations with my husband as well and with his saying, I think you're gonna start your period. I took it as he was now being dismissive toward my concerns and minimizing what was so important to me at that time. I can remember the next day starting my period and hiding the evidence because I felt so defensive.

Oh. But if you, like you said, [00:24:00] you reframed it and you saw it that he was coming from a position of love, and now that you know about PMBD, you know that he's on your side and if he points something out to you, it's so that you can go, oh, I need your help in showing me up. I need strength and support, and I gotta use my tools and get through this.

Yeah. I think with those of us who are very high functioning and high achieving people mm-hmm. We do a lot. Even in the service area, we love to serve. Yes. It can be confusing and hard for those that love us to know how to support us because they don't want to be like, oh, you can't do this.

I think learning how to communicate Yes. To say, Hey, will you do this thing that I do every other day? Mm-hmm. I just don't feel like doing it. Do you mind doing that? [00:25:00] Right. Even something that's just more on my list, you know, it's in my world, not really his, so it's not even on his radar.

Mm-hmm. Learning to communicate will you do this? It's something that will bother you if it doesn't get done right. Because normally you get it done. Right.

And that's where family could really come in and be good supports or friends. Yep. To help with that. One conversation that we had with Christina and her psychiatrist on one of those Zoom calls was over productivity and how guilty Christina felt when she went through times of not being productive.

Once we learned about PMDD explained it all so well. Of course you can't be productive when you feel as though someone has pulled your plug. You have no energy. It has drained out of you. The thought of taking the trash can out to the street or fixing dinner seems like too much. But [00:26:00] then the shame and the guilt would settle in because she thought I can do this.

'cause Christina's like you, high functioning, accomplished. She didn't realize how much value she put on herself based on her productivity. But then we all, her psychiatrist and we didn't really fully understand how much we were talking to a shield in front of her. Our words were bouncing off this PMDD shield because we're trying to tell her, you are of worth whether or not you can be productive.

But she wasn't internalizing that at the time. It's almost impossible to, at least for me. Mm-hmm. But now I know it's just the shield. I know and I can get there more easily. And at least recognize that what they're saying is true I just don't feel it. Mm-hmm.

Do you feel like with increased understanding that families can heal and marriages can have some healing if all of us [00:27:00] understand this?

I feel like that's really part of what's on our hearts to do is increase awareness so that parents, spouses, partners, friends, children, everybody could be more understanding that this is a legit medical problem and that their loved one needs support. This isn't the time to fight back and to engage in that way, but to try to lift their burden and to try to show more love.

Maybe if we could forgive the misunderstandings, the times when the conversations go sideways. All of this to understand this is PMDD talking right now. But don't make any, um, sarcastic remarks about PMDD because that would be like making a sarcastic remark to somebody about their cancer or their diabetes or

fill in the blank medical problem.

This is real. Yeah. I do think understanding can definitely heal families, marriages, relationships. Mm-hmm. Yeah. [00:28:00] Yeah.

I'm not sure I answered your question, but for ovulation around that time period, I am more sensitive in a, things just irritate me more. I remember noticing it, a month ago or two that, wow, this is the third talk I've had with him today since he's been home and he's only been home and hour. Mm-hmm. And I was like, I think yes, each of those things needed addressing, but not to the point that I addressed them.

I won't have a full blown argument with my husband about something during ovulation where I would right before my period if I'm not in a good place.

Have you figured out what led to having a lighter, um, PMDD experience in your luteal phase versus other months when it's more difficult? Do you know what precipitated the differences?

Yes. The [00:29:00] fluoxetine helped, having higher stress, if I'm approaching the holidays from a place of there's all these things to do. I have a worst time in luteal phase. It's kind of interesting 'cause planning can really help and alleviate and make my symptoms lighter. But if I'm like, I have to plan so that I will be okay. That heaviness has a similar effect. I usually still have a hard time. Eating whole foods. When I really cut out processed foods. That has helped have less symptoms.

I've connected particularly ovulation with histamine intolerance. There's a naturopathic doctor, who talks about that with hormones and trying to repair your period. That's been a work in progress for me because I didn't know that one of my go-to meals when I [00:30:00] feel like life is gonna be crazy is to do crockpot meals or for my husband to cook.

And mm-hmm. Just last month I happened to be feeling really terrible. I knew it was ovulation time. I looked at the last seven days and my husband had slow cooked ribs. And we'd had those for, I think it was ribs anyway, I know it was out in the smoker.

Those previous seven days, and two of them I think overlapped my ovulation. We'd had that and we'd had slow cooker roast and slow cooker chicken. Apparently the longer meats cook, the longer food cooks, the more histamines it develops. Oh, I did not know this.

I didn't know it until I was in a bad place and I looked up something on the internet about histamine. I had, like a year ago, I [00:31:00] knew I needed to watch certain foods, like citrus was something that would really affect me. I'd been having these little, the cutie oranges along with all these slow cooked meats. That day all I did was have a salad with just a little bit of the meat for dinner and mm-hmm. I already felt my whole body calm. I was like, man. And I was just begging myself, Heidi, don't forget, like Heidi, don't forget that around ovulation. You need to remember about the histamines.

I wish I had understood this. Christina and I did not have this understanding. I wish it was more, I mean, we're getting it out there, right? We'll do what we can, but you only know what you know. Right. You don't know what you don't. I don't know if it's just anecdotal right now or if there's been research if anybody's doing research on that.

The thing is, is that I totally respect when somebody says, I know what I live with. I live in my [00:32:00] body and this is what happens to me. And so that little bit of knowledge is so helpful for you so that you don't have those symptoms as badly as you would otherwise. Yeah. And we just need to know though, that we will, we might forget.

Mm-hmm. We might make a shift and think, oh, this is the thing that's really helping me and forget about this other thing. And it has to be okay because we need to be kind to ourself and be like, oh yeah, I need to go back to that. Yeah. Or be willing to try something new. I've done so many things. So you could relate to all of this trial and error conversation that we've had through all this.

Absolutely. I'm eyeing right now, hypnotherapy, I'm like, oh, that would be interesting. I think it's just fascinating though, because I do view PMDD as a physical illness. Mm-hmm. A physical kind of disability. Right. So how would hypnotherapy help with the [00:33:00] histamines?

Yeah. Or the brain sensitive reaction to the shifts of the hormones. But I have a dear friend who does hypnotherapy for PMDD. She has clients for whom it's effective and it was effective for her. So I trust her that what she's saying is absolutely true. And I was with one of her clients one day and she said it is made a world of difference for her.

All I can go by is what I've heard and what I've seen with them so far. I don't know enough about it, but I wondered the same thing. How does that work? Except that the neuroplasticity of the brain is amazing and I don't understand the full extent of how powerful it can be. Yeah. Yep.

We've talked together about how there are so many options and different things will work for different people.

So yeah. Try what you feel comfortable with. I always put a plug in for not overspending. I think the price tag can add so much stress to your family Yes. And yourself. [00:34:00] So look for something else. If the thing you really wanna do is too much money for what you're comfortable with, shifts to something else first and maybe save up.

I really believe that a woman with PMDD will be, okay if she feels supported. She is okay when she feels supported, whatever that means to her. I agree with you. Mm-hmm. In fact, right there, how can you help yourself?

I like the resource@imd.org. There are so many resources there. Help yourself also by finding the right doctor. The first gynecologist Christina saw gas litter. I think our eyes met and we both knew what was going on. We just didn't say anything in the appointment. But then when we got out to the parking lot where we could freely talk to each other, we knew we wouldn't be returning to that doctor.

Advocate for yourself by preparing [00:35:00] questions and concerns before appointments. And if you're comfortable, bring someone with you. One mother wrote to me one night late at night. She said, I know about you because my sister is a nurse where you see your doctor and you had given him a stack of the cards, the information cards.

She gave me one of the cards, and this could be my daughter, we're trying to find out. And she said, but what I feel like is that my daughter is feeling better when she goes to the doctor so she's not really fully explaining, um, about the collateral damage that happens in the household and how bad it is for her and all this.

So then the mom will jump in and say, oh no, it's so much worse than what she's even describing. But then she feels like she's coming across as a mom with Munchausens, where she's trying to make her child sick, you know? Hmm. She ended her email she wrote her name and then she said, PS I'm not a psycho, I'm a mom.

'cause she had written those three paragraphs about different doctor's appointments. You could read the desperation in her [00:36:00] email. It was 11 o'clock at night and she had asked if I could get back to her, but she knew it was late. And she hoped that she hadn't disturbed my sleep. I just called her right back 'cause I knew she was awake.

I said, I know you're not a psycho. And she burst into tears. So if you have trouble speaking for yourself, advocating for yourself, bring that person. A psychiatrist gave some tips at one of those fireside chats at our house. He said to say, this is my mom, or this is my spouse, or This is my best friend and I've asked them to speak for me because it's sometimes difficult for me to articulate really what's going on, especially when I'm not in the throes of it, in the luteal phase. But then in the luteal phase, you feel more quiet and it could be hard to talk for yourself. But just say they have permission to speak for me to convey what I'm feeling.

He said sometimes people feel a little white coat syndrome and it's okay to say that, you know, when they're a little intimidated by going to a doctor. Learn how to work with your employer. Some people will need [00:37:00] intermittent FMLA. They might need some special accommodations. I don't know what that would look like with the various jobs people have, but perhaps there's something.

And then grace, give yourself grace during the luteal phase. Know you'll be back. But in that timeframe, you do need more rest. You need to take it easy. This is not the time that you need to be out moving mountains and doing great things. Your family will all survive. If they eat Cheerios and tomato soup, they will be fine.

Try to reduce stress as much as possible, but eat real food and get mild exercise like what you're talking about. You know, as much as is possible to do that. Would you agree with those steps for helping yourself? Yes. Those are beautiful. Oh, thank you. And then how can you help your family member or friend listen without judgment and show love and compassion?

This isn't the time really to even need to have discussions or to defend yourself. Just [00:38:00] realize this is the throes of PMDD and it's going to pass. Learn about PMDD and premenstrual exacerbation. Do your own research. It can be very difficult for someone with PMDD to speak as articulately as you do, Heidi, you're amazing and you share so beautifully what other people can't share.

Not only that, but if they're in their home setting, if they bring up one thing, then they're afraid it's gonna lead to 20 questions and then it can get exhausting and frustrating.

Do your own research, offer to go to appointments, offer to take care of tasks for them, but do it with a way of being respectful and asking permission instead of taking over.

'Cause you don't wanna reinforce their own feelings, that they're not capable, so that you wanna help them the way you would help them if they broke their leg.

Basic things that seem simple to you 'cause you feel good, could feel daunting to the person with PNDD. Can you imagine if you feel so exhausted, like your plug has been pulled and [00:39:00] yet you're supposed to muster the strength to take a shower, get dressed, get in the car, drive across town through traffic just to go to a grocery store and mind your way up and down aisles to do grocery shopping or whatever you have to do.

That could feel daunting, couldn't it? Preparing meals, cleaning, helping with children like homework baths, getting ready for bed, taking care of pets, outside work, whatever it is, getting the trash out to the street for trash day, going to the pharmacy or the post office. And then encourage rest.

Not everything has to be done. Stop looking at social media. Stop looking at perfect houses on social media. Sometimes I'll see these young moms and their homes look absolutely perfect, and they'll write something like, forgive the mess. And I'm looking at their house thinking, where's I don't see a mess?

What, what mess. Sometimes we're so hard on ourselves, but you're allowed to live in your house. And living in your house means there will be dirty dishes, there will be pots and pan, there will be laundry that needs to be folded, that's living in your house. And it doesn't [00:40:00] have to be done right away. It's okay. Your home is your home and that's where you live. Yeah.

A few little highlights about what inspired us to form the foundation was one day we received a text with photos. We didn't know this was happening, but in the country of Wales, in the parliament, there were pictures of our daughter on the big screens.

Oh yeah. The equivalent of one of their members of the House or Senate was working with someone with PMDD and they had created A-P-M-D-D day. Christina's picture and her story was posted. There it is in one of the pictures on there too. It's a reminder that there are deaths due to PMDD. It's sad for us because we've lived it and her children have that collateral damage for the rest of their sweet lives.

We passed the nation's first PMDD awareness day. The bill passed on May 12th, but it was set for October 2nd, her birthday. And then, we founded [00:41:00] the Christina Bone Foundation in 2024. That was the month after we had the first 5K. Then last year we had the second 5K, and then now this year, the 5K is coming up on Saturday, October 17th in Columbia, Missouri.

We have a virtual option to sign up or the in-person option. We'll have the dinner at our home for women with PMDD and they can bring a guest with them. You're welcome to contact us and we would love to have you. The 5K signups is on run signup.com. Okay. I wanna write that down.

Okay. It would be so great if you could come. I would love to. Oh my gosh. Can you imagine? It'd be so great. Yeah. To just give you a hug. I know. To meet people in real life is such a treat. We communicate over zoom with people frequently and so this would be so meaningful to get to meet you.

When we saw this picture with the butterfly and the ripple, the butterfly is what we used to represent Christina in heaven and butterflies have so [00:42:00] much meaning for so many of us too, which is transformation and emerging into a new life, changes but what we're all doing, what we are doing, what you are doing, what others are doing to talk about PMDD.

What they've witnessed or what they've lived with is making a difference. And eventually all our ripples will connect. Someday people will know about PMDD as well as they know about PMS. Right now the average length of time for someone to get a diagnosis is 12 years. That doesn't mean that they're going to the doctor for various tests for 12 years, it's just that they haven't heard about it or their doctor hadn't heard about it.

And then it's just taking forever to get the right diagnosis. They finally landed the right doctor. Something changes, but generally, according to studies, it's about 12 years. And for Christina, she was seeking help for 11 years, but then she figured she might have had it as long as 15 years. I did a query on a social media platform and I told everybody that.

I said, you know who I am, I'm Christina's mom. She [00:43:00] felt like she had it for as long as 15 years, although she had been seeking help for 11 years. I'm curious how long it took for you to get your diagnosis. Over 100 respondents. One said over 40 years, two said over 30 years, there were many in the 20 year range. The most were in the 10 to 20 year range, but only two could say they were diagnosed in a matter of months because their doctors knew about PMDD. Wow. Yeah. Ooh, well there's still, then I wanna share my resources. So yeah, everything is backed up. I'll stop sharing so we can just talk.

Okay. Oh, well, it's been such a pleasure to talk with you. This is such good information and based on what you just said, there's so much room for more people to know so that women can get the help that they need.

As I've been looking into hypnotherapy, one of the observations of the woman that does [00:44:00] it was that women with PMDD tend to be sensitive to other people's needs.

I thought that was interesting. I hadn't made that connection. I certainly am that kind of person. Kind helpers. Mm-hmm. Supportive, good friends. Mm-hmm. Faithful friends. Yeah. Mm-hmm. Well, thank you. I dunno what the, all the connection is, but I believe it. Yeah, because it's you, it's Christina.

It's so many whom I met. Wonderful, wonderful people. And you think, how come, why are they living with such a debilitating and exhausting disorder? Yeah. Well, hopefully we can keep spreading the word and keep helping people find ways to live better with it or get rid of it. I believe people that say they've heard theirs, different people say different things and I'm just happy for [00:45:00] them.

I hope I get there someday, but I'm also at the point that I feel like I'll be okay. Mm-hmm. As long as I just keep trying and keep remembering that I'm loved and there is support. Through menopause. I think that will clear a lot of things. I think it might be harder for me beforehand, but I don't know because a lot of women have a hard time leading up to menopause.

So menopause, whether or not you have PMDD perimenopause can be tough. Yeah. Yep. One thing that would gimme strength to get through hard things is to think how many women have already lived on this earth and have gone through similar things and they got through it so I'll get through it too. Whether it's childbirth or a difficult situation.

We have people who went before us that we could look back to. This is where I'm thinking about the women who come up to me who are older now, who say, I'm sure this is what I had. [00:46:00] And then I would like to say, can we sit down for an hour and just let me sit by your knees and, and hear how you did that. When they started menstruating in the 1930s or 1940s and here they are now in the two thousands telling me that they know they had that all those years and other elderly women, how did they survive it?

Yeah. But I bet a lot comes down to that support. We loved Christina with all our hearts and we still lost her. So PMBD is serious no matter what. Yep. It really is. Mm-hmm.

Did I already tell you about the seven minute video on the YouTube channel, the Christina Bone Foundation YouTube? I did, yes.

Okay. I didn't know that you had a Christina Bone YouTube channel. I think you, when we talked, I think you've mentioned it, but I I wrote it down this time.

You're doing a great job. Thank you so much. Thank you Mary Beth. Thank you for being [00:47:00] on the show and for sharing your knowledge and your experience. It's nice to be here with you. I'm so glad we met.

Me too. Absolutely.

Thanks so much for listening to the Living Well with PMDD podcast. To learn more about life coaching with me, visit my website Heidi, H-E-I-D-I, bradford coaching.com. Until next time, keep hoping, keep loving, and remember that you are not alone.