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    Community Voices

    Hi everyone! I'm so glad I found this group! I've been trying to find people and resources for parents with chronic illness and pain. Especially for people with young children. I have an amazing one-year-old. During the postpartum period I've been diagnosed with two different chronic illnesses, #Endometriosis and #Fibromyalgia along with having chronic pain from my C-section. I'll try to stay active but getting through the daily routine can be really challenging. Hoping to connect with people going through the same thing. #

    7 people are talking about this
    Community Voices

    Down Dog & Pass it On: Parental Benefits to Baby & Me Yoga

    <p>Down Dog & Pass it On: Parental Benefits to Baby & Me Yoga</p>
    Community Voices

    A New Reality in Mom Stress

    <p>A New Reality in Mom Stress</p>
    Community Voices

    Any tips for watching young kids all day when dealing with severe migraines?

    New here to the mighty! Recently graduated with my masters degree as a new father who has been dealing with and experiencing chronic migraines most my life. My partner is a gem and has been watching our son from home while working from home and while looking for a full time job, having both a blast and a challenge watching our son and spending more time with him. He’s so fast strong smart and adventurous and just turned 8-months, ahead a couple months on milestones. He’s crawling, standing up on his own and I bet walking any day now but this week has been a really rough one with migraines, my partner and I recently found out we’re expecting and dealing with postpartum and 1st trimester fatigue and I am trying to watch him even more than usual after she gets off work to help with this.Gratefully, he is getting much better at sleeping longer and in his crib 8-10 hours a night.Any tips for watching independent and adventurous little ones when struggling with migraines during the day? I meditate a lot and focus on showering myself with self love and compassion and patience when powering through but finding it especially hard when he doesn’t want to be held but is speeding around grabbing and touching and balancing off everything and I feel I need to shadow him so doesn’t bump his head, get into the cat food,etc. Any tips would be appreciated and to any fellow parents with chronic pain, I hear you,I support you and I’m so proud of you 😊!! #Parenting #chronicmigranes #self -love, #breathwork

    Amber Mendoza

    Treatment for Postpartum Depression Saved My Mental Health

    Mother’s Day 2010, the day I found out I was going to be a Mom. I remember the two pink lines on the pregnancy test and the immediate joy I felt to finally have them. Three years of trying and it was finally happening. Looking back, I think the first sign something wasn’t right was when they placed my 6 lb. 15oz little girl in my arms that I had been dying to meet for the last 38 weeks, I instantly started sobbing. Not necessarily tears of happiness, not exactly sadness. Just a pure sense of being overwhelmed. The day we went home from the hospital was the day it really started. What do I do now? How could the nurses really just send me home with her? I didn’t know what to do without them. I had such bad anxiety over everything, I had read so much about SIDS that I couldn’t fall asleep for more than 15 minutes without waking up convincing myself she wasn’t breathing. No sleep and prior mental health issues don’t bode well. I remember one morning after my now ex-husband had gotten home from work, it was probably 2:30-3 am, and was tired from being a new dad and having worked all night, I took the screaming baby to him and said “I can’t do this anymore, she cries and I can’t make her stop. I don’t want her anymore, just take her I can’t do it.” She cried all the time, I obviously wasn’t meant to be a Mom I told myself. She hated me. She would be better off without me, happier. It’s been 11 years since I said those words but I can still see his face in my mind clearly, as if it just happened today. The look of confusion, anger, disgust, hurt. We had planned this child, how could I not want her? I didn’t understand it myself, I couldn’t imagine how he must’ve felt. A mother, the mother of his newborn daughter saying this about a child we desperately wanted. I feel guilty even today for ever having said those things, thinking them. But I know that wasn’t me. Not the me I am today. I don’t remember much about the early days, I don’t know if it’s a blessing or a curse. I have pictures, but the person in them looks blank. Lost. Scared. I went for my 12 week appointment to get my stitches checked. Her birth was traumatic and I had to have an emergency episiotomy while my epidural had worn off. I talked to the doctor about how I was feeling and he told me this is common and that I would get better. That I should’ve spoken up sooner, with the complicated pregnancy, traumatic birth, and prior mental health issues that postpartum depression (PPD) was very likely to be occurring. But it would be better. I would get through this. In that moment I didn’t believe it. I couldn’t see past that minute, in that small office. I felt trapped. I can’t explain it, but I felt as if the walls were caving in on me and all I wanted to do was run so far from that room, away from my daughter, from my then husband, my then mother-in-law. Everything and everyone. It took until my daughter was 7-8 months old for me to even start bonding with her again. I’d always loved her, more than anything, but the bonding hadn’t been there at first. It pains me to admit that. To someone who hasn’t experienced it themselves, I’m sure it makes me sound terrible. I’m thankful I didn’t lose more time to PPD. Seven to 8 months felt like a lifetime. Being diagnosed with PPD really made me take charge and be proactive about the mental health issues I had neglected since my teens. I don’t know how it would’ve turned out had I not been forced to get the help in treating my PPD. I believe as terrible as it was, that it saved me. Today, my daughter is 11. She’s smart, funny, an amazing pitcher in softball; she’s beautiful. We have definitely come so far from those early days. I’m sad that I “missed out,” but I’m thankful I got the help I needed to be there for her now, when she’s old enough to realize if I wasn’t here supporting her. I’m the loudest at her games, her number one fan. Postpartum depression was and is one of the worst things that I’ve ever had to deal with, but we turned it around and made our ending better. I will forever be an advocate for women in the postpartum period. Postpartum depression is scary, you can feel alone. But you’re not alone. I hope we can end the stigma and help other Moms know they’re not alone.

    Community Voices

    Intro New Here

    Hi Everyone! I am new here. I have been diagnosed with endometriosis and fibromyalgia. I've received both after my baby was born. I faced fertility challenges leading up to this pregnancy.

    Postpartum has been very difficult physically for me and it seems like I'm the only one talking about it in my everyday life. I am a stay at home parent, so I am very active and have very little downtime during the day.

    Overall, I am just now really coming to terms what living with 2 chronic illnesses will be life. And I try to be optimistic and tell myself I will get to a point where my body feels good again. I have to believe that to get through the day.

    6 people are talking about this
    Community Voices
    Community Voices

    Bipolar Disorder and Striving for Stability

    Yesterday, I started writing at 3:30 a.m. I’d slept from 11 p.m. to 2 a.m. after getting drunk alone. Seems I’m still in a manic episode that has been going on for almost two weeks. I wrote about how I’ve thrown caution and self-care out the window for the past year. How I suddenly realized that I didn’t need to hold myself together for self-preservation. I’m finally in a safe space, where I can just spill my guts all over the floor and I won’t die in a pool of my own blood. I can see now how this has led to more frequent and severe cycles. I started medication again this year, and have repeatedly blamed my mood stabilizer for my cycles or the new severity. When really, it’s because I’ve done nothing else to help myself. So what am I going to do about it? I feel really blessed to be in a life where I have the resources for stability. I have a supportive husband. A mom who has battled her own bipolar disorder. A great therapist. Two friends I care dearly about and confide in. And two wonderful children. I live my dream of homeschooling. I keep my kids home with me where we can learn math, phonics, and the mysteries of the solar system together. We go to homeschool meetups, libraries, museums, and parks. We have the freedom and flexibility to run. And freedom and flexibility to lean into tablet time and long naps on days when I can’t manage much else. My husband has a good-paying job with excellent benefits (except for prescription coverage, which is absolutely abysmal). They pay for us to go to conferences in beautiful resorts. I’m afforded the opportunity to see places I’d never see otherwise. Experience things I never thought I’d experience. I live in the country with acreage. I delight in watching my chickens peck around for bugs in the warm summer sun. We go for walks down our long driveway. I spend hours at a time soaking up the heat as I mow the yard. I scream privilege. So some of the tools I’ll be using might not be accessible to everyone. It’s shitty and I’m sorry if you’re in that boat. This is what helps me: Psychiatry I denied psychiatric help from 2012 until 2021, despite having been diagnosed in 2010. It was only through very strict lifestyle management that I was able to survive those years. And tight lips about my paranoid delusions kept me out of the hospital. Nonetheless, they are mostly years devoid of true happiness. Now, I see that medication is integral to my stability. I actually saw my psychiatrist yesterday, were we tacked on another mood stabilizer and an as-needed sleep medication. This brings me to my next point. Limited Medication Access I’m one of the lucky ones who have nearly constant passive suicidality. I know how I’d do it. I don’t want to when I’m stable, but I know that I’m an emotionally reactive and impulsive person. Currently, my husband has my meds in a lockbox with two hidden keys. I get a week’s supply of my medication. With two emergencies doses in my car. Sometimes, seven days’ worth of medication still feels dangerous. So we’re trying… Hero Medication Dispenser I ordered this nifty device last night. It is a medication dispenser that holds a 90-day-supply of up to 10 medications and alerts you when it’s time to take them each day. The main point is that my husband can add a lock code, so I’m not allowed to dispense more than my daily dosage. This serves a few purposes. I’m nervous about having access to a week’s worth of medication. I don’t want to traumatize my family on impulse. I don’t like that my husband is so acutely aware of how close I may be to the edge. I don’t like him regularly dispensing my medication to be a part of our lives as often as it is. And, given my fears about how much medication I currently have on hand, we need to give me even more restricted access. If I’m honest, I’ll admit that having a flashy machine dispense my medication like a live-in nurse sounds like it’ll add a little spice to my medication routine. There are often deals where the machine is free using a coupon code. If you pay for a year in advance, it comes out to $300 for the app service. Which is definitely something we can swing. There is a 90-day return policy, and they pay for return shipping. Sleep Hygiene The severity of my episodes has made this particularly difficult. I’ve been alternating between a few hours of sleep and staying awake for 48-ish hours for almost two weeks. Some nights I take a heavy dose of Unisom and melatonin, just to spend the nights shaking but wide awake. There are a few days to help this though. Consistent sleep and wake times A solid bedtime routine A dark bedroom Light exercise early in the day Using things like Unisom, melatonin, and anti-depressants as needed. Blue Light Glasses As spring approaches, this will be extra important for me. Dr. Tracey Marks is a fantastic source on YouTube. But, basically, you wear blue-light-blocking glasses a few hours in the morning, and a few hours in the evening while actively manic. You wear them for a few hours (but slightly less), when stable as a preventative factor. Spring mania is real for me, so I have to order a pair this year. Diet I’ve recently read “The Fuck It Diet” by Caroline Dooner. I’d gained weight this year and needed a way to remind myself that my body is OK as it is. This book was freeing. So as I worked towards food neutrality, I was eating a lot of foods that are lovely and nutritious but don’t make me feel as good.I’m feeling ready to eat a more balanced diet, with an emphasis on pleasurable eating experiences without rules. Staying Sober This is a big one that I’ve been struggling with. I’ve made sure to be no less than tipsy most days in the past two weeks. Sometimes it’s a bottle of Prosecco mixed with lemonade, followed by two bottles of Angry Orchard. Some nights it’s a mix of lemonade and half a bottle of cherry Smirnoff vodka. Alcohol slows the bees. Truth be told, I’d rather just evict the bees. And alcohol + bipolar + bipolar meds = bad news. Part of my problem is that one drink always leads to four. And four drinks always leads to a crushing headache and equally crushing regret. I’m not an angry drunk, but I act extremely out of character. So I dumped my remaining two bottles of Angry Orchard yesterday morning. There is a bottle of whiskey in the freezer, but my body has instantly purged itself of dark liquor since I began drinking 11 years ago. This will include a few awkward conversations with friends and family. A minimum, I’ll just be saying I’m not drinking. Then I’ll choose between saying I’m on a medication that interacts with alcohol (true), or that I’m on something for depression. I’ve spiraled a lot in the past 12 months. I think this has been the worst year since I struggled with postpartum psychosis in 2016. And I have to take responsibility for my part in my own unraveling. Here’s to a new year of learning to care for me again.

    Monika Sudakov

    The 5 Best Period Tracking Apps for People With Endometriosis

    Full disclosure: I haven’t had a period in 10 years since I had a hysterectomy. Back then I tracked my period and symptoms the old-fashioned way, with a calendar and a pen. Obviously, technology has monumentally shifted the ways in which we can do things like track our periods and this has some plusses and minuses. I was curious to see what was out there and to find out which apps were worth investigating if you are trying to track your period. I discovered some fascinating things. First, almost all the period tracking apps in existence are geared toward fertility and pregnancy. There’s nothing wrong with that, however, my focus was on finding apps that were uniquely well suited to tracking the symptoms and irregularity of periods that are common with those who have endometriosis. It is through this lens that I took a deep dive into the world of period tracking apps. My methodology was meticulous. I downloaded the top 10 apps available and then established accounts on every single one. For the ones that had both paid and free options, I explored both to assess what you could get with the free versions versus the paid versions. For paid apps, I set up free trials so that I could investigate every aspect of the app. After spending hours going through the usability, efficacy, reviews, and cost/benefit analysis of each app, I have narrowed things down to the top five apps that I think offer the best features for someone using them with the intent of managing their endometriosis. 1) Flo Period & Ovulation Tracker This app scores 4.8 Stars with 826K ratings. Developers are very responsive to both positive and negative feedback which makes it a dynamic and more reliable app. It is used by 230M women and co-created with 100+ leading health and medical experts and acclaimed medical institutions. The app is a partner of the United Nations Population Fund in the area of reproductive health and it was voted Best Fertility App in 2020 by Healthline. When you log in it immediately asks if you have irregular periods, whether you have a history of reproductive disorders including endometriosis, whether you have trouble sleeping, whether you have any mental health concerns, sexual activity concerns, fitness goals, or skin condition concerns. Daily information logged includes: sex and sex drive, mood, symptoms including common digestive issues with endometriosis, vaginal discharge, other (travel, stress, disease or injury, alcohol), and a section for personalized notes. Based on your entries, it suggests daily insights with articles that are reviewed by medical professionals, including leaders in the field of sex education like Dr. Emily Nagoski, author of “Come As You Are.” Each insight includes educational information, recommendations for how to address any issues, workout suggestions, dietary advice, and more. While the participation of high-profile educators and medical professionals isn’t in and of itself a guarantee of quality, in this case, it does provide a level of heightened legitimacy that I personally appreciated. It has a reports section offering various analyses including cycle length, period length and intensity, patterns of your body, and a graph of events. It also has the option to create a report for your doctor, which would be very handy for sharing information relevant to the diagnosis of endometriosis. My favorite feature is the “Secret Chats” section. You can search by topics, cater your feed based on interests you have selected including “Endometriosis Support,” and follow individual users based on your preferences. It is a multi-faceted platform that includes information on a wide range of topics relevant not just to reproductive health, but mental health and lifestyle as well. The cost for this app is $7.99 per month or $39.99 per year if you pay in full. The cost was the most common complaint in the reviews, particularly from long-time users who began using the app when it was free. If I were to pay for an app, however, this would be it. I found it to be extremely user-friendly and thorough and it had a lot of added content that would make the cost worth the investment. I’d give this app an A. 2) Eve by Glow — Period Tracker This app scores 4.7 stars with 103K ratings. The biggest complaints about the app were that the free version is very limited, it constantly prompts you to upgrade to premium, and some of the sex information was too graphic. There were also several comments suggesting that the app says it is “inclusive” but that it seems geared toward a very cisgender population in language and content. The app advertises itself as a period tracker and sex app. It offers daily sex quizzes to become a sexpert. This seems to be its unique gimmick. It has a log-in button that says “Get It, Girl” which immediately makes it seem not very gender-inclusive. There are extensive options of data to enter daily including: Did you take your pill? Did you get some? mood, sex drive, symptoms, flow, discharge, anything off down there? exercise, and did you indulge? Each section has a fairly comprehensive list of options, which again makes it not just a good nuanced symptom tracker for reproductive health issues like endometriosis, but actually a comprehensive lifestyle tracker. It has a daily offering of articles to peruse, many of which have topics that seem like they came out of Cosmopolitan magazine like “Blow Job Moves” and “Hotter Sex.” It also has a very active community that you can customize by topic, group, and followers. This section is pretty cool and I could see it being very useful. Anecdotally the Endometriosis Support group has 33,753 members, so that’s encouraging. It also has a section called “Wishlist” where you can request and send gifts to other members: for example, baby supplies for someone who has recently gotten pregnant after infertility issues due to endometriosis. One note of caution: If you have a history of sexual violence and are still actively in trauma recovery, some of the content on this app might be triggering. Additionally, it is not suitable for younger users due to the graphic nature of its sexual content. The basic app is free. Premium membership unlocks comparative insights, premium content, private messaging, custom profile, and premium support. The cost is $29.99 for 3 months, $59.99 per year or $79.99 for lifetime. Considering what you actually get access to with the free version, this app is pretty comprehensive. It’s a little busy, but I could see using the free version of this app personally; therefore, I’d give it a B+. 3) Period Tracker Period Calendar This app scores 4.9 stars with 114K ratings. The biggest complaint users had was that there are too many ads. The developer states that the ads are how they keep the app affordable, although the pricing structure is comparable to all of the other apps, so this is a slightly dubious claim. The app is used by 240 million women. Goal options for the app include: track my period, try to conceive, and track my pregnancy. Features include compatibility with Apple Health and Apple Watch and it allows you to export reports to your doctor. The extensive symptom list includes head, body, cervix, fluid, abdomen, and mental health categories. It also has a diary feature. The “Self Care” section has “Soundscapes,” menstrual cramp relief ideas, programs like Kegel exercises, workout plans, facial care suggestions, meditations, stretching regimens, and a breast self-exam section. The holistic approach focus of this app makes it unique and appealing to someone who is trying to tackle all aspects of their reproductive health. It also has a forum where users can post comments and questions and interact with one another, but it isn’t as user-friendly as some of the other apps. Additionally, the app has custom profile options allowing you to select a theme and pet, which is cute for younger users. It’s fairly straightforward to use as far as entering data, but there are some language issues. They actually have a section to suggest errors in translation and recommend changes, so they are aware of the issue. The cost for this app is $9.99 per month or $49.99 per year if you pay in full. For the cost and usability, I’d give this app a B-. 4) Clue Period & Cycle Tracker This app scores 4.8 stars with 319K ratings. It has very easy to access support for issues with the app which is appealing considering that the most common user complaints were that the app crashes frequently, it makes you select period tracking or pregnancy tracking, people have lost their data when the app was updated, and many of the features are only available for premium membership. There is also concern over the developer’s privacy policy. This app was named the Best Fertility App of 2022 by Healthline and the Top Free Period Tracker App by Obstetrics & Gynecology Journal (ACOG). The daily symptom tracking has sections for bleeding, pill, sex, skin, emotions, pain, and weight, but the options for each section were limited to four choices, which isn’t nuanced enough to give meaningful information on possible reproductive issues like endometriosis. The best part of the app is the content section, which has extensive information and articles on a myriad of topics including birth control, fertility, sex, menstruation, issues and conditions (including endometriosis), and LGBTQIA+. It also has an “Ask a Scientist” section which has information on gender & sexuality, the science of sex, understanding fertility, mental health, health disparities, and PMS: fact or fiction. The app itself isn’t as user-friendly as others and the charts are a little convoluted to read. I almost wish you could access the content section without the rest of the app. Its biggest plus is how inclusive it is, making a point to state that the app is for “anyone who menstruates.” The cost for this app is $9.99 per month or $39.99 per year if you pay in full. Membership includes science-based articles, monthly emails with cycle statistics, six upcoming cycle predictions, analysis of your cycle patterns, pregnancy, and postpartum tracking. Basic free membership only includes period predictions and symptom tracking. I’m not sure it would be worth the cost for the paid membership so I give it a C+, but it might be a good option for a very basic free period tracker. 5) My Calendar — Period Tracker This app scores 4.8 stars with 29K ratings. The most common comments were that it’s easy to use and accurate. The daily log includes categories for sexual activity, symptoms, moods, birth control, medicine, temperature, and weight with a healthy list of options for each which makes it a good nuanced app for tracking possible symptoms of endometriosis. It also allows you to set reminders for medication, birth control pills, meditation, and cycle. There are customizable themes and reports that can be generated and forwarded to a medical professional, but not a lot of other bells or whistles. It really is a basic period and pregnancy tracking app. It’s fairly easy to use and not very flashy. The app is free with ads. The cost for this app is $23.99 premium for a year or $69.99 for life. I wouldn’t pay for this app because the paid version doesn’t come with a lot of extras, but would consider the free version for basic period tracking, so I give it a C. So what are my biggest takeaways after investigating period tracking apps? That trying to decide on a period tracking app without having any kind of guidance would be a huge crapshoot. There are so many and they are so diverse in their functionality and efficacy that I would be daunted trying to choose one that fits my needs. Hopefully, my research and notes are useful in helping you select one that will enable you to make more educated decisions about your reproductive health and wellness. A couple of final notes. I want to caution anyone utilizing these apps as a means of tracking ovulation for birth control. None of them can accurately predict that kind of information, so I’d recommend more reliable forms of family planning. Secondly, I happen to be the kind of person who will only use an app if it is extremely intuitive to use and doesn’t bombard me with ads. I lose patience quickly if the data entry process for logging symptoms is too tedious. Others might be more apt to take the time to do so, but I’ve deleted a number of health and wellness apps because I wasn’t willing to spend 15 minutes a day using them. That’s a personal bias of mine that is reflected in my assessment of each of these apps.