I appreciate the realness. All the videos you do are so helpful, but honestly its nice to see a RUclipsr who is not afraid to show that they are human. Desks get messy, babies cry, sometimes i use baby wipes and dry shampoo for way too many days in a row because standing and showering costs wayyyyy more spoons than I have or i have that really weird scalp pain thing i get in prodrome and touching let alone washing my hair is terrible
You have so much support. I can't count the times i have cried to my husband over the frustration of doctors not believing me or coworkers mocking me. Jen, your simptoms ARE REAL. You are so strong and you are helping so many of us. Everyone who watches your channel believes you because we see it. You have the footage of when it gets bad, show the doctors migraine jen, show them potsy jen and leaking jen. Make them see you how we see you, as a strong warrior queen fighting for herself and others like her
I hate the word "real" because psychological problems can have very severe physiological symptoms. Not saying her problem is psychological, but using the word real to describe it makes it seem like we are describing symptoms caused by psychological problems as "not real" I wonder how else we could go about describing it so that we aren't downplaying psychological or mental health problems.
@@SnowFamilyVacations I was referring to doctors not believing that she was having any of the symptoms she claimed to have, very specifically the doctors who think she was making the whole thing up when i used the word real. I suffer from horrible ptsd and generalized anxiety and i know first hand how difficult mental health disorders can be, and how physical symptoms can be part of that. I was not discounting that, i was validating the fact that Jen is experiencing physical symptoms, that we have seen her experience them, and that the doctors who were acting like she was making it up were wrong to do so. I have struggled with my physical and mental health since childhood, and in this context i am totally okay with the word real because the doctor was trying to say she wasn't experiencing any symptoms at all and then sent her to psych to get her out of the office. There is a huge stigma that people with migraines are lieing or exaggerating. To me the psych referral is a separate and equally as frustrating issue
That was definitely a roller coaster. If I had one one opinion to take from this video, though, that would be: gosh she's a great mom, that baby looks so happy! (and I'm really really impressed with the potty signs)
"I have to film a Q+A now" You didn't *have* to. You have to put yourself first. We are just here to support you. Bring us in if it supports you. Do youtube if it brings you joy and support.
Ugh I almost started crying with you just because it triggered memories of all the times I've left a specialist appointment feeling unseen, and crying my eyes out. I've been bounced from specialist to specialist and the hardest part is that as soon as you don't fit the checks in their box, you are no longer their problem. They shut right down. So many hoops to jump through and if we don't, we are noncompliant. OR if certain symptoms don't fit their diagnosis for us, and we question them, then we are suddenly too dumb to know our own bodies and probably aren't having the symptoms we say we are having. It's infuriating! I get it.
My heart broke as soon as you said there was a stipulation in order to get the referral.. I knew immediately what was going to be asked of you and that is hard to swallow. It's immediately like a slap in the face. Although they are making you jump hoops, I'm at least glad you'll be able to see the doctor you wanted to as well. Praying for you, may God give you the strength and comfort you need as you continue to seek answers for your health.
I'm sorry you felt that way after your medical appointment. I really hope you find a good professional who listens to you and respects your symptoms, your truth and your situation. Greetings from Colombia
I wanted to cry with you with all the run-around the doctors put their patients through. And I appreciate you showing the drastic cognitive changes you go through. My cognitive abilities take a huge hit when my pain is elevated and most folks around me are astounded when they realize my speech is slower, my memory takes a vacation, and I have a hard time making a complete sentence because I can't find the word I want to say or forget what I'm saying. It's scary and horrendously irritating. Big hugs and I'm keeping you in prayer. God bless!
God Jen, I’m so sorry! This really sucks! I hate that you have to go through this with the doctors. It’s really not fair to you at all. Don’t ever feel bad for sharing when your struggling. I am so appreciative for how much you share. You really make my day brighter. 💜💜💜
Jen thank you so much for showing these glimpses at raising a small baby as a disabled mother, it has been so important and positive for me to see and has given be a lot of hope about raising a child with a service dog as well
When you started crying, I started crying. You're so strong for continuing to fight for yourself and your health. I hope things get better for you. You're such an amazing mom, and we are so, so proud of how far you've come, and how you show that you are also a human being with feelings. We love you, Jen. Keep smiling. 🦋
You have no idea how much this video helped me..! I suffer from graves disease. Its been 4 years and i know no one who goes through a sick day like me and my sick days are almost every other day.. even consecutive days.. and it breaks me! I feel so down just cause im tired of being sick. And i finally feel like im not alone! Life is hard with chronic illness. Im so sorry you're going through this i know how you feel.. ❤
I feel this and I'm sorry. I was given the psych runaround as well when in fact I was undiagnosed with POTS. It sucks that one of the hardest parts of being chronically ill is not being taken seriously.
I think this video is the epitome of what you set out to do. Over the course of your journey, you stated that you wanted to educate people about your condition - and this is the most thorough evidence of what happens in your life. It takes courage to expose aspects of life like frustration, unhappiness and pain. But people need to see them in order understand and accept it as a disability. You are currently at a rough patch, but hold on to the support that people around you provide. You deserve that support, as your commitment and effort are evident. I am so far away from you in the real world, but so close emotionally… Hugs.
Really appericate the rawness of this video Jen, the amount of times I've come away from an appoinment like that is ridiculous. Makes me feel less alone
Hey Jen, thank you for being vulnerable so people like me can better understand. My father has cluster migraines, which can be debilitating. It is difficult for others to see and understand. So, thank you for sharing and being yourself. I give you all the positive vibes, prayers and kudos for you and your platform.
At 24 mins when you didn't know if you repeated yourself and the pain was setting in and you were realizing was JUST SO RELATABLE FOR ME! I hate that feeling and moment! I just love all your videos and I don't have words for it cause I'm in pain TOO! GURL I HAVE SO MUCH LOVE FOR YOU! THANK YOU FOR PUTING YOURSELF OUT THERE SO I DON'T FEEL SO ALONE RIGHT NOW! THANK YOU! LOVE YOU! 💗 🤗
Hi Jen! I just stumbled on your channel a few days ago, and I can't begin to explain how much I appreciate this channel. I am 21 years old, and got diagnosed with chronic migraines at 11 years old, and they have been almost daily ever since. Migraines can be so incredibly lonely, because so few people understand what we go through, so although sad we're in the same shoes, it's very comforting knowing I'm not alone. My mom had to fight for me since I was little, and I have to fight for me every day, just to get doctors to understand. I have also been sent to therapists, because "a child can't be this sick, so it must all be in her head", and it's heartbreaking not only suffering, but people judging you, and thinking you're faking it all on top of it all. I have a blog, and I've had it since I was 12, and I try my hardest to use my platform to spread much needed awareness about chronic migraines, but it is so hard because I just find myself getting upset every time I try to retell a story from being in hospital, or how I've been treated, because people would never treat a person with a visible illness the way people with invisible illnesses get treated every day. People like you motivate me to keep sharing, because that's the only way we can make a difference. I also find a lot of comfort in you being a mom with migraines, because it gives me hope for my own future. I have always wanted kids of my own someday, but I also have a lot of fears about being a good enough mom, when I'm not even able to work (because of my illness). I really want to be a mom someday, but I just fear I won't be enough. Stumbling across your channel, the thought of you not being a good enough mom because of your illness, has never crossed my mind. Yeah, you have to do things a little different, but you look like you're absolutely killing it! Finding a channel not only discussing migraines, but migraines and motherhood, has really given me hope that maybe I can be like you one day, and have a family of my own. That maybe I can be more than just my migraines. Sorry for dumping this messy train of thoughts on you haha, but I just wanted to say how much I appreciate you and your channel. Thank you for sharing your life with us, for being so open and honest, and thank you for giving me hope that I can be more than just my migraines someday 💕
I do really like the day in the life. I get that it can be a bit too much carrying the camera around and tripod. So no pressure to make more of these, but this has been my favourite video in terms of getting a good idea of how you deal with migraines coming on. How did you teach Baby to sign? Is there a tutorial? I'm sorry doctors are so dismissive of you. I really hope you get to see that doctor you need to see!
Don't give up. Just keep up. You will win in the end. Sometimes we go in circles before we get there in the end. I wish you all the best. Thank you for showing us this precious little girl. I love all of you. God bless.
Thank you for your courage and strength and willingness to be so honest and vulnerable with us about what's going on. Proud of you for everything you're doing.
My heart breaks for you. It took 23yrs to find a doctor that could provide my diagnosis. It is worth fighting for yourself. Do what they ask, get in to see him. Hopefully he will be willing to give your intuition the respect it deserves. Never give up on finding answers.
You just validated me so much. I had an appointment this week where they inferred it was psychological even though I’ve already tried that and they said to go to a doctor. I had mental health people literally begging me to see a doctor. And to hear from a doctor that they basically don’t believe you, ugh so frustrating. It sucks to be pinged back and forth like a rag doll. I get you. And you just made my day because now I don’t feel so alone. Thank you. Blessings and hugs to you💜
Hehehhe that was a great video, thanks for doing it despite it adding more stress to your day. It was interesting to see Jen turn into Migraine Jen slowly throughout the day. Also.... Omfg these doctors are so friggen annoying, I'm so sorry you were reffered to a psychiatrist, what a way to say " I think you're crazy!". Sooooo frustrating, I teared up with you there. Your feelings are valid girl...... Big sigh. You're strong af to have done the Q&A after that!
I think the algorithm suggested you because I'm currently going through the jumps and hoops of my own CSF, POTS, Chiari, hEDS, dysautonomia, (insert bunch of stuff) journey & documenting it with my other stuff on my channel. Hopefully, you, me, and everyone gets to where we need to be with this. Fighting for things like this is absolutely insane, but I was able to get my feet wet with it by advocating for my medically complex son. Now, mommy advocates for herself. Good luck! 😊
I cannot thank you enough for this video. The part when you were crying - I recognised that exact cry, and I could imagine that exact feeling, for those exact kinds of reasons. From a cool detached perspective I could say "well, it's good because you get your referral and will get to see the decent doctor and its not that terrible seeing MH professionals who might even help you with life as a chronically ill person" but those are the exact kinds of things my dad says to me and it frustrates me SO much. Seeing this video has allowed a really great chance for communication between me and my dad (who is autistic to add another complicating factor) and has allowed us a good chance to discuss helpful and unhelpful things to say, and ways he can support me. I've never really been the one who isn't being hurt by the drs, I'm always the one doing the crying. So thankyou so much. It's made a real impact on my life, and it must have been hard to share. I hope that the new neurologist is better, and I hope that the mental health support is just useful rather than dismissive!
Man I get your emotional pain. I have been dealing with vertigo and my balance being totally messed up for over 3 years. Now I have neuropathy in my legs and feet. I keep getting worse and no doctor can figure out my illness. Cant work. Life activities are limited. My spoons are sooo limited. The fatigue is overwhelming. Finding your videos help me embrace my challenging life.
Gen, we love you so much. You are not crazy. You are an absolutely amazing person, you will get through this. I am so sorry that you have been through so much. You will find a doctor who will figure this out. You are absolutely amazing and I am so proud of how hard you are fighting. You will get through this. It will get better. I love you, we love you. You are a fantastic mother, your baby is so lucky to have a mother as great as you. You will get through this, we all love you.
Thank you for keeping your reactions after your neurology appointment in the video. I have most definitely had similar times in my life and its good for people who havent been through that to see it
I loved this! I also have migraine (chronic and hemiplegic) as well as POTS and this is so relatable. I desperately want to be a mom some day, and this helps give me some confidence that I'll be able to eventually!
This video is so helpful for me. Thank you. I had already watched the q&a and everything seemed fine. This really showed me that I need to stop comparing myself to youtubers.
I was going to ask what it looked like/felt like the transition in between Normal Jen and Migraine Jen and it was so clear here, how you started slipping away slowly. It must be awful feeling yourself slip away like that. I wanna say, though, that you manage amazingly, so proud of you!
Omg honey God bless your soul!! I know how annoying it is when doctors won’t look past any amount of anxiety in their patients health history. I know how frustrating that is. And then they proceed to see people like us stuttering and seemingly anxious instead of us just being frustrated. I really do pray that we both find answers to our health soon. Especially since we have dogs that are trained to help us function.
I understand you so well. I recognize this so hard. I feel bad that this exact same problem is taking place on the other side of the world. much strength.
So much openness and honesty. Thank you for sharing your reality. So sorry about you neuro appointment. I'm not one to talk feelz, but I know the frustration and the suffering and the anxiety. You're stuck in a health care system that is flawed. From my perspective, you're better off than in socialised system. I have experienced American and Australian. Don't give up. I know you won't. You're not alone. 💪🏻
You're welcome! And I appreciate what you've said. I also prefer it to a socialized system... I can usually book all the MRI's they keep making me get within a week of referral 😅 I want it separated from employment.
I literally gasped when you said that they would send you to the doctor you need IF you went to psych. I am absolutely infuriated for you. You're absolutely right; once doctors see ANY mental health history on your chart, you're screwed. I commented on another video about having the exact same issue. It feels like they're holding your health hostage. I've had that same meltdown so many times because of dismissive and manipulative physicians. Did they even take into consideration that you're a LITERAL scientist and know how to think logically and do proper research before drawing a conclusion??? I'm just.... I have so many words and yet can't even speak because I'm so angry at these doctors. I'm so sorry they're putting you through this, and I'm praying that you find the help you need soon!!
Super informative info on CSF leak. This doc is looking to find people who have this problem...because they are suffering and their problem can likely be fixed. Bless him!
Ian Carroll, MD Stanford: In 2015 Dr. Carroll collaborated With Stanford's Neuroradiology and Neurology Headache divisions to create the Stanford CSF Leak Headache Program after his daughter suffered through an initially-undiagnosed CSF leak. This experience left him with a passion for helping patients experiencing CSF leaks around the world. I hope you get the help you need, Jen. Thanks for sharing your life and helping us all learn.
Haha thank you! She didn't like peeing in her diaper at all so we just never let her learn to like it. She does a mix of both! But 90% of poop goes in the toilet. SCORE!
This was such a good vlog, it was such a good behind-the-scenes look at everything that goes into doing anything with chronic illness and disability, and how people see the smiling face when we "get on with it" but don't see everything it took to get there. Thank you so much for sharing this video, for sharing a day and for being so raw and real with us. I am so sorry how your appointment turned out, you are so not alone in your experience, keep hanging in there, I hope you get the help you need soon
I 'm just... just... speechless. They don't even try to help you in any way. I just shake my head and sigh. But on the other hand it's really remarkable how well you handle your situation. In my book you're the toughest person I've ever met. I really hope that you will be treated well any time soon. Love from Germany.
Mom Jen is probably my favorite not gonna lie! Also we are definitely not the priority so if you need to care for yourself, do it! I feel like with any potentially complicated patient they don’t want to deal with it so they send us to mental health professionals. I’m sorry you are being told this. Thank you for being real with us.
This hit home SO much! I have seizures and migraines. I actually got admitted to the psychiatric floor of the hospital because my seizures were not showing up on their monitors. Many years later after constant seizures I finally found the right Neurologist and they realized I have epilepsy and I now haven’t had a seizure in two years!! I’m so sorry for your sorrow I truly do understand the feeling!!!
It’s terrible that we have serious concerns and are treated like we are crazy. I have hair raising stories of being treated like I was high when I was having seizures.
I’ve been there. Doctors don’t look past your anxiety disorder. I actually get frustrated before I go to the doctors because I find it pointless. Girl, I hear you so loud right now. Don’t give up. There are doctors that actually like their job and want to help. I found one for the first time in 37 years, that’s how old I am lol. I’m hoping you find the one that takes it seriously. ❤️
You and Buddy playing at the beginning was just too cute for words! Also your baby is gorgeous, you and your husband must be so proud:)) Good luck with your appointments
Been there done that. Doing that again. And will probably be doing it again. That's the migraine. I got my alert early this morning too. Now I'm doing the lay down thing till sleep comes. Buddy is the reason i started watching you guys. Felt very at home watching you guys. I have a Service Dog too. He is a Mini Doxie Spaniel mix. I don't need big i just needed one who would be determined enough to climb up on the table and he put hos head up to mine and looks me straight in the eye. Like are you going to listen to me. And i hsve a fourteen year old daughter who is the best blessing i have ever had through all of this. Enjoy your time with the little beauty they grow so fast.
Thank you for showing yourself crying and angry after a doctor's appointment. The post appointment despair is one of the loneliest parts of chronic illness for me, and you're making me feel less alone. I'm sorry your doctors are being so shitty and unhelpful. :(
I understood your tears so much. I just got out of the hospital yesterday after being there for three days. I have been having episodes that last for 15 minutes and come every couple of hours where I can’t move and my speech is incoherent. While in the hospital, a psychiatrist was sent to my room to talk to me. After determining that there was nothing they could do to help me, they just sent me home. I have just been crying and trying not to give up. But this video made me feel less alone 🥰
It made me feel sad to see you struggling after that neurology appointment, but I have done the same thing. Being yanked around by the medical community is no fun. I am so thankful for all the support that you have. Much love!
Omg I loved this vlog so much but besides the point you are literally SUCH a great mom and a great person in general I've felt so many of the struggles in this video but you're just so strong and don't give up and that's literally amazing I'm so beyond proud 🥺🖤🖤 illysm keep being you gen and just know Im so glad for all of the things you do for us 🖤ik how hard it is and I just wanna let you know it's greatly appreciated 🖤
I really enjoy watching your videos. I had my baby last year started getting terrible headaches since. They thought I had a csf leak from my epidural but never did a blood patch or anything. Now I have been diagnosed with migraines and high pressure headaches. I can’t stand the sun light at all. I just want to thank you for making these videos. I don’t think these doctors realize how bad we feel. They automatically assume as well oh your having a migraine because your dad has them by family history. I hope you get everything figured out I know how it feels not to be listened to just this past year. It sucks having a headache everyday.
We know exactly how you feel after the appointment. You do not have to worry about vent to me at least. I have said all those things after appointments to try to figure out my stuff too. I have one of the most decorated therapists we joke about how over qualified she is and they still don't believe anything is going on.
I'm so sorry your doctor isn't listening to you. Sometimes doctors forget that they work for you. They believe that they know what's best for you. Keep pushing, and advocating for yourself. You are strong!
Possible LPT: switch to sulfate free conditioner and co-wash instead of typical shampoo (aka the curly method). Most people need less washes in general. Personally I went from needing a wash every 4 days to needing one once every 14 days due to lessening oil production. 🤞
Lovely video, thanks for sharing. Your daughter is so cute and looks sooo much like you! I too have POTs and chronic migraine, found your channel when I was searching for vlogs about migraine. Shoutout fellow spoonie (who also does her makeup on the floor)
Totally have headbutted the tap when I've been washing my hair. I now have a wash bowl on top of the cabinet which is great so I don't need to lean over so far
Also, having to lay down flat to get relief from the headache is definitely a sign of low CSF pressure which in someone without a shunt most commonly means a leak somewhere. Sorry for the unsolicited medical information but those are the exact types of headaches/migraines I’ve been dealing with for the last 6 years because my shunt keeps over draining
And I’m sure she didn’t know that was a symptom right? No way she could have just said that right. Ya know what would easily put this issue to bed? Having her many “brain fluid” tissues tested for...brain fluid. It’s not difficult. Haven’t heard her say that any doctor has done that to confirm her self diagnosis.
@@baileyturner4143 why are you being so rude and condescending? I was trying to be encouraging to her that her symptoms AREN’T just psychological like adult neurosurgeons and neurologists told me for over a year and going as far as diagnosing me as anorexic and depressed almost KILLING me.
@@TheArmybrat12 why? Because I can’t stand a liar and a fake. I absolutely think that there are doctors of all types that make errors in their diagnosis’ , give people the run around or do it just to play the insurance/money game. I do not believe that is the case here. This woman is waaaaay over exaggerated in her efforts to appear ill, she has been referred to or recommended by more than one neurological doctor to see a psychiatrist and a psychologist, which she is so such isn’t what she needs. I find it extremely hard to believe that individuals who are educated to the hilt on these type disorders, have not throughly examined and assessed her at length. A simple lab test would rule out or verify her claims of leaking brain fluid. Do you not find it odd that nearly every symptom she has is just basic enough that it can’t be proven/disproven? Must be vertical for 2hrs a day-says what doctor? Feels the switch to “Migraine Jen” and onset of migraine-says what test? Or my favorite, dog licks face as signal several hours before apparent migraine onset-says what trainer or paperwork detailing/outlining his abilities? I’d like to see her husband get down in the floor and play with the dog, put his face close down by it and let’s see if this “service animal” doesn’t lick his face too. I’m sorry, it reeks of needing attention and being a hypochondriac. I don’t just take someone’s word at face value. Show the receipts lady.
I'm so sorry for the way you've been treated. Doctors don't seem to realize that patients get to the point where they don't care if they're a "pin cushion" they just want answers. It shouldn't be so difficult to get tested like you need to even if it's just to check a possible diagnosis off the list. You are so incredible. Parenting is hard enough on its own, and you are killing it with everything else you have to deal with daily. You're such an amazing person. Keep pushing for yourself to get your answers. I'm sure there's a doctor somewhere that'll help. Good luck ❤️
The ONLY WAY to fold shirts! Also, I'm so sorry that doctors are giving you the run around. I have a friend with a starch intolerance that took nearly a decade of misery to diagnose because doctors insisted it was something else and no one listened to her. Don't give up the fight! Keep standing up for yourself! Crazy props to you for getting through this day! You are an incredibly strong person!
How does a doctor who believes that much in patient advocacy make you have to go to a doctor who doesn't believe you? I'm so incredibly over doctors not believing patients. I hope you tell them about this bs she's making you do, and I hope they are as incensed as you (rightfully) are.
You are not crazy. Hey Jen, I did go to the same stuff as you are ( Just left a comment on the " Migraine Jen Rule" Video, about my diagnose). Over 20 doctors were telling me crazy. But then I found "THE ONE" who made an MRI again and told me before I stared talking what I have and what he thinks my symptoms are at this stage. He nailed it. It took over 2 YEARS to find a doctor to finally telling me what's wrong with me.
I've had to have too many conversations with my therapist about whether or not I'm a hypochondriac (she's adamant that I'm not and I trust her.) I've had many problems building up for over a decade before finally getting them checked out, and I've moved a lot in my life, so when I see a new doctor and take thirty minutes just to discuss the things I deal with, I find that they tend to be subtly dismissive by the middle of the visit because they assume I'm overreacting. It's very difficult during the pandemic, but I find having someone with me (like my fiancé) who is willing to be unmoving and advocate for me when I start to get emotional and overwhelmed and defeated is amazing. He is the reason I've gotten many doctors to listen to me after they'd started to write me off. I really hope the new doctor takes the time to truly listen to you, and I hope that having to go though therapy/psychiatry again isn't traumatizing; it's difficult enough on its own, let alone with your circumstances.
Omg.. I just cried with you. Doctors not believing you is the worst. Had trouble over ten years ago with doctors not believing i had a depression, they finally diagnosed me so i could get treated. But then my doctor would hardly believe it was anything else when i started getting symptoms of migraine. I had no idea because the symtoms suggested it was my heart. They just kept talking about panic attacks. Then two years ago i found a doctor who immeadiately diagnosed me with migraine. Sent me to a neurologist who scanned and checked me and put me on medication for it within four months. i really hope for you they get it together and start taking it seriously!! Of course your symtoms are real!
Omg when you started crying out of, what looked like, frustration I felt that! I have a moderate hearing loss at 32 and trying to get in with ENT has been a 2 year journey of bullcrap! My initial appointment was cancelled due to covid and my 3 other appointments have been cancelled with no reason! I now can't book an appointment myself and have to wait for the hospital to book me in! Its affecting my work life my relationship and I cry whenever someone "makes fun" of my disability! I can't help but understand and feel how you feel.
I feel you. I was down Wednesday from a migraine that started at 9:30 pm Tuesday. It's so hard to speak, even think with a migraine. Hugs honey. Keep at it.
Hi fellow migraine sufferer here! Have you ever tested for mold exposure? I highly highly suggest it. The nose running all day is a common symptom. Also POTS is common with mold illness as well. Vibrant Wellness has a urine test.
"I wanna be where the outside is... so I can ask to come back inside" the most relatable thing ever
And it sounds just what a cat would too, lol.
I appreciate the realness. All the videos you do are so helpful, but honestly its nice to see a RUclipsr who is not afraid to show that they are human. Desks get messy, babies cry, sometimes i use baby wipes and dry shampoo for way too many days in a row because standing and showering costs wayyyyy more spoons than I have or i have that really weird scalp pain thing i get in prodrome and touching let alone washing my hair is terrible
You have so much support. I can't count the times i have cried to my husband over the frustration of doctors not believing me or coworkers mocking me. Jen, your simptoms ARE REAL. You are so strong and you are helping so many of us. Everyone who watches your channel believes you because we see it. You have the footage of when it gets bad, show the doctors migraine jen, show them potsy jen and leaking jen. Make them see you how we see you, as a strong warrior queen fighting for herself and others like her
This, 100% this.
I hate the word "real" because psychological problems can have very severe physiological symptoms. Not saying her problem is psychological, but using the word real to describe it makes it seem like we are describing symptoms caused by psychological problems as "not real" I wonder how else we could go about describing it so that we aren't downplaying psychological or mental health problems.
@@SnowFamilyVacations I was referring to doctors not believing that she was having any of the symptoms she claimed to have, very specifically the doctors who think she was making the whole thing up when i used the word real. I suffer from horrible ptsd and generalized anxiety and i know first hand how difficult mental health disorders can be, and how physical symptoms can be part of that. I was not discounting that, i was validating the fact that Jen is experiencing physical symptoms, that we have seen her experience them, and that the doctors who were acting like she was making it up were wrong to do so. I have struggled with my physical and mental health since childhood, and in this context i am totally okay with the word real because the doctor was trying to say she wasn't experiencing any symptoms at all and then sent her to psych to get her out of the office. There is a huge stigma that people with migraines are lieing or exaggerating. To me the psych referral is a separate and equally as frustrating issue
Would love to hear your husband’s story one day. From mute for 3 years to college professor... pretty cool!
That was definitely a roller coaster. If I had one one opinion to take from this video, though, that would be: gosh she's a great mom, that baby looks so happy! (and I'm really really impressed with the potty signs)
“I’m allergic to... myself”. Wow I felt that. 😂😳😭
i died when she said: "I'm allergic to myself" with such a clean cut too loll
It is extremely relatable for people with autoimmune illnesses. I chuckled when I hear it, and saw your comment
Sweat is a problem with me... Not fun. It gets itchy.
"I have to film a Q+A now" You didn't *have* to. You have to put yourself first. We are just here to support you. Bring us in if it supports you. Do youtube if it brings you joy and support.
This comment!!! 👆
Agreed.
Amazing comment!!!!!
Ugh I almost started crying with you just because it triggered memories of all the times I've left a specialist appointment feeling unseen, and crying my eyes out. I've been bounced from specialist to specialist and the hardest part is that as soon as you don't fit the checks in their box, you are no longer their problem. They shut right down. So many hoops to jump through and if we don't, we are noncompliant. OR if certain symptoms don't fit their diagnosis for us, and we question them, then we are suddenly too dumb to know our own bodies and probably aren't having the symptoms we say we are having. It's infuriating! I get it.
My heart broke as soon as you said there was a stipulation in order to get the referral.. I knew immediately what was going to be asked of you and that is hard to swallow. It's immediately like a slap in the face. Although they are making you jump hoops, I'm at least glad you'll be able to see the doctor you wanted to as well. Praying for you, may God give you the strength and comfort you need as you continue to seek answers for your health.
I'm sorry you felt that way after your medical appointment. I really hope you find a good professional who listens to you and respects your symptoms, your truth and your situation. Greetings from Colombia
Aw Jen. Seeing you cry makes me want to just give you a hug and tell you it will get better. I'm so sorry this is happening to you.
You are an AWESOME PERSON! Seriously..... heart of gold.
Thank you!!!!!! Thanks a lot. Based on your profile picture, you seem fun too!
"I have allergies. Did I tell you guys? And they give me paralysis! Just these crazy allergies I have." LOL, Jen I love you.
Felt this comment the most i think
I wanted to cry with you with all the run-around the doctors put their patients through. And I appreciate you showing the drastic cognitive changes you go through. My cognitive abilities take a huge hit when my pain is elevated and most folks around me are astounded when they realize my speech is slower, my memory takes a vacation, and I have a hard time making a complete sentence because I can't find the word I want to say or forget what I'm saying. It's scary and horrendously irritating. Big hugs and I'm keeping you in prayer. God bless!
Regular Jen: “Am I Migraine Jen?”
Migraine Jen: “Welcome to my channel!”
This was great and really made me smile 😊
MJ means it, too. MJ loves you guys 😅
Your hubby looks so much different than I expected him to, So much love to and in your fam
God Jen, I’m so sorry! This really sucks!
I hate that you have to go through this with the doctors. It’s really not fair to you at all.
Don’t ever feel bad for sharing when your struggling. I am so appreciative for how much you share. You really make my day brighter. 💜💜💜
Jen thank you so much for showing these glimpses at raising a small baby as a disabled mother, it has been so important and positive for me to see and has given be a lot of hope about raising a child with a service dog as well
Omg I can’t with your sweet baby! She is so cute!! And AMAZING with using the toilet! Seriously impressed!
When you started crying, I started crying. You're so strong for continuing to fight for yourself and your health. I hope things get better for you. You're such an amazing mom, and we are so, so proud of how far you've come, and how you show that you are also a human being with feelings.
We love you, Jen.
Keep smiling. 🦋
You have no idea how much this video helped me..! I suffer from graves disease. Its been 4 years and i know no one who goes through a sick day like me and my sick days are almost every other day.. even consecutive days.. and it breaks me! I feel so down just cause im tired of being sick. And i finally feel like im not alone! Life is hard with chronic illness. Im so sorry you're going through this i know how you feel.. ❤
I love that you are doing elimination communication. I wish I would have known about it when I had my babies!!!!!
I feel this and I'm sorry. I was given the psych runaround as well when in fact I was undiagnosed with POTS. It sucks that one of the hardest parts of being chronically ill is not being taken seriously.
Sending love. I am glad you pushed to get your diagnosis. Thank you for sharing your story and encouraging others to keep advocating for themselves!
I think this video is the epitome of what you set out to do.
Over the course of your journey, you stated that you wanted to educate people about your condition - and this is the most thorough evidence of what happens in your life.
It takes courage to expose aspects of life like frustration, unhappiness and pain. But people need to see them in order understand and accept it as a disability.
You are currently at a rough patch, but hold on to the support that people around you provide. You deserve that support, as your commitment and effort are evident.
I am so far away from you in the real world, but so close emotionally…
Hugs.
Thank you, kind stranger 🙏❤
Really appericate the rawness of this video Jen, the amount of times I've come away from an appoinment like that is ridiculous. Makes me feel less alone
Hey Jen, thank you for being vulnerable so people like me can better understand. My father has cluster migraines, which can be debilitating. It is difficult for others to see and understand. So, thank you for sharing and being yourself. I give you all the positive vibes, prayers and kudos for you and your platform.
At 24 mins when you didn't know if you repeated yourself and the pain was setting in and you were realizing was JUST SO RELATABLE FOR ME! I hate that feeling and moment! I just love all your videos and I don't have words for it cause I'm in pain TOO! GURL I HAVE SO MUCH LOVE FOR YOU! THANK YOU FOR PUTING YOURSELF OUT THERE SO I DON'T FEEL SO ALONE RIGHT NOW! THANK YOU! LOVE YOU! 💗 🤗
I WANNA HUG YOU
Hi Jen! I just stumbled on your channel a few days ago, and I can't begin to explain how much I appreciate this channel. I am 21 years old, and got diagnosed with chronic migraines at 11 years old, and they have been almost daily ever since. Migraines can be so incredibly lonely, because so few people understand what we go through, so although sad we're in the same shoes, it's very comforting knowing I'm not alone. My mom had to fight for me since I was little, and I have to fight for me every day, just to get doctors to understand. I have also been sent to therapists, because "a child can't be this sick, so it must all be in her head", and it's heartbreaking not only suffering, but people judging you, and thinking you're faking it all on top of it all. I have a blog, and I've had it since I was 12, and I try my hardest to use my platform to spread much needed awareness about chronic migraines, but it is so hard because I just find myself getting upset every time I try to retell a story from being in hospital, or how I've been treated, because people would never treat a person with a visible illness the way people with invisible illnesses get treated every day. People like you motivate me to keep sharing, because that's the only way we can make a difference. I also find a lot of comfort in you being a mom with migraines, because it gives me hope for my own future. I have always wanted kids of my own someday, but I also have a lot of fears about being a good enough mom, when I'm not even able to work (because of my illness). I really want to be a mom someday, but I just fear I won't be enough. Stumbling across your channel, the thought of you not being a good enough mom because of your illness, has never crossed my mind. Yeah, you have to do things a little different, but you look like you're absolutely killing it! Finding a channel not only discussing migraines, but migraines and motherhood, has really given me hope that maybe I can be like you one day, and have a family of my own. That maybe I can be more than just my migraines. Sorry for dumping this messy train of thoughts on you haha, but I just wanted to say how much I appreciate you and your channel. Thank you for sharing your life with us, for being so open and honest, and thank you for giving me hope that I can be more than just my migraines someday 💕
Oh my God she is SO ADORABLE I cannot handle.
I do really like the day in the life. I get that it can be a bit too much carrying the camera around and tripod. So no pressure to make more of these, but this has been my favourite video in terms of getting a good idea of how you deal with migraines coming on. How did you teach Baby to sign? Is there a tutorial?
I'm sorry doctors are so dismissive of you. I really hope you get to see that doctor you need to see!
Signing time is great!
Don't give up. Just keep up. You will win in the end. Sometimes we go in circles before we get there in the end. I wish you all the best. Thank you for showing us this precious little girl. I love all of you. God bless.
Thank you for your courage and strength and willingness to be so honest and vulnerable with us about what's going on. Proud of you for everything you're doing.
My heart breaks for you. It took 23yrs to find a doctor that could provide my diagnosis. It is worth fighting for yourself. Do what they ask, get in to see him. Hopefully he will be willing to give your intuition the respect it deserves. Never give up on finding answers.
I can't be the only one who just feels like we are friends with you, Jen :) You are so personable with us and it's awesome!!!
I am so sorry that you are going through all this Jen. Sending you a great big virtual hug.
I’m crying because this is so relatable.
The babies laugh is to die for.
You just validated me so much. I had an appointment this week where they inferred it was psychological even though I’ve already tried that and they said to go to a doctor. I had mental health people literally begging me to see a doctor. And to hear from a doctor that they basically don’t believe you, ugh so frustrating. It sucks to be pinged back and forth like a rag doll. I get you. And you just made my day because now I don’t feel so alone. Thank you. Blessings and hugs to you💜
Hehehhe that was a great video, thanks for doing it despite it adding more stress to your day. It was interesting to see Jen turn into Migraine Jen slowly throughout the day. Also.... Omfg these doctors are so friggen annoying, I'm so sorry you were reffered to a psychiatrist, what a way to say " I think you're crazy!". Sooooo frustrating, I teared up with you there. Your feelings are valid girl...... Big sigh. You're strong af to have done the Q&A after that!
Sending all the hugs and love
I think the algorithm suggested you because I'm currently going through the jumps and hoops of my own CSF, POTS, Chiari, hEDS, dysautonomia, (insert bunch of stuff) journey & documenting it with my other stuff on my channel. Hopefully, you, me, and everyone gets to where we need to be with this. Fighting for things like this is absolutely insane, but I was able to get my feet wet with it by advocating for my medically complex son. Now, mommy advocates for herself. Good luck! 😊
“Im tired.......right?” -Migraine Jen
Asking the camera if she’s actually tired....so cute!
She's hilarious 🤣
I cannot thank you enough for this video. The part when you were crying - I recognised that exact cry, and I could imagine that exact feeling, for those exact kinds of reasons. From a cool detached perspective I could say "well, it's good because you get your referral and will get to see the decent doctor and its not that terrible seeing MH professionals who might even help you with life as a chronically ill person" but those are the exact kinds of things my dad says to me and it frustrates me SO much. Seeing this video has allowed a really great chance for communication between me and my dad (who is autistic to add another complicating factor) and has allowed us a good chance to discuss helpful and unhelpful things to say, and ways he can support me. I've never really been the one who isn't being hurt by the drs, I'm always the one doing the crying. So thankyou so much. It's made a real impact on my life, and it must have been hard to share. I hope that the new neurologist is better, and I hope that the mental health support is just useful rather than dismissive!
Man I get your emotional pain. I have been dealing with vertigo and my balance being totally messed up for over 3 years. Now I have neuropathy in my legs and feet. I keep getting worse and no doctor can figure out my illness. Cant work. Life activities are limited. My spoons are sooo limited. The fatigue is overwhelming. Finding your videos help me embrace my challenging life.
Gen, we love you so much. You are not crazy. You are an absolutely amazing person, you will get through this. I am so sorry that you have been through so much. You will find a doctor who will figure this out. You are absolutely amazing and I am so proud of how hard you are fighting. You will get through this. It will get better. I love you, we love you. You are a fantastic mother, your baby is so lucky to have a mother as great as you. You will get through this, we all love you.
Thank you for keeping your reactions after your neurology appointment in the video. I have most definitely had similar times in my life and its good for people who havent been through that to see it
I've been looking forward to this! Such a wonderful video. Thank you so much for sharing this day in your life!
I loved this! I also have migraine (chronic and hemiplegic) as well as POTS and this is so relatable. I desperately want to be a mom some day, and this helps give me some confidence that I'll be able to eventually!
This video is so helpful for me. Thank you. I had already watched the q&a and everything seemed fine. This really showed me that I need to stop comparing myself to youtubers.
I was going to ask what it looked like/felt like the transition in between Normal Jen and Migraine Jen and it was so clear here, how you started slipping away slowly. It must be awful feeling yourself slip away like that. I wanna say, though, that you manage amazingly, so proud of you!
Omg honey God bless your soul!! I know how annoying it is when doctors won’t look past any amount of anxiety in their patients health history. I know how frustrating that is. And then they proceed to see people like us stuttering and seemingly anxious instead of us just being frustrated. I really do pray that we both find answers to our health soon. Especially since we have dogs that are trained to help us function.
I understand you so well. I recognize this so hard. I feel bad that this exact same problem is taking place on the other side of the world. much strength.
So much openness and honesty. Thank you for sharing your reality. So sorry about you neuro appointment. I'm not one to talk feelz, but I know the frustration and the suffering and the anxiety. You're stuck in a health care system that is flawed. From my perspective, you're better off than in socialised system. I have experienced American and Australian. Don't give up. I know you won't. You're not alone. 💪🏻
You're welcome! And I appreciate what you've said. I also prefer it to a socialized system... I can usually book all the MRI's they keep making me get within a week of referral 😅 I want it separated from employment.
I literally gasped when you said that they would send you to the doctor you need IF you went to psych. I am absolutely infuriated for you. You're absolutely right; once doctors see ANY mental health history on your chart, you're screwed. I commented on another video about having the exact same issue. It feels like they're holding your health hostage.
I've had that same meltdown so many times because of dismissive and manipulative physicians. Did they even take into consideration that you're a LITERAL scientist and know how to think logically and do proper research before drawing a conclusion??? I'm just.... I have so many words and yet can't even speak because I'm so angry at these doctors. I'm so sorry they're putting you through this, and I'm praying that you find the help you need soon!!
Super informative info on CSF leak. This doc is looking to find people who have this problem...because they are suffering and their problem can likely be fixed. Bless him!
Ian Carroll, MD Stanford: In 2015 Dr. Carroll collaborated With Stanford's Neuroradiology and Neurology Headache divisions to create the Stanford CSF Leak Headache Program after his daughter suffered through an initially-undiagnosed CSF leak. This experience left him with a passion for helping patients experiencing CSF leaks around the world. I hope you get the help you need, Jen. Thanks for sharing your life and helping us all learn.
I am amazed that your baby is able to use the toilet on a regular basis. Like my mind is blown.
Haha thank you! She didn't like peeing in her diaper at all so we just never let her learn to like it. She does a mix of both! But 90% of poop goes in the toilet. SCORE!
This was such a good vlog, it was such a good behind-the-scenes look at everything that goes into doing anything with chronic illness and disability, and how people see the smiling face when we "get on with it" but don't see everything it took to get there. Thank you so much for sharing this video, for sharing a day and for being so raw and real with us.
I am so sorry how your appointment turned out, you are so not alone in your experience, keep hanging in there, I hope you get the help you need soon
What a courageous video! And you put so much work into it! You are seen and heard by us, even if others negate you.
I 'm just... just... speechless. They don't even try to help you in any way. I just shake my head and sigh. But on the other hand it's really remarkable how well you handle your situation. In my book you're the toughest person I've ever met. I really hope that you will be treated well any time soon. Love from Germany.
You're so so kind, thank you. Hugs from the States 💜
I’m proud of you. Facing your health struggles and being a great Mom. That is such a cute baby. And I’m a baby expert. 🥰🍼
Hehhee thanks a ton
Mom Jen is probably my favorite not gonna lie! Also we are definitely not the priority so if you need to care for yourself, do it!
I feel like with any potentially complicated patient they don’t want to deal with it so they send us to mental health professionals. I’m sorry you are being told this. Thank you for being real with us.
I love the baby signs and the potty training. Your family is such a great team.
This hit home SO much! I have seizures and migraines. I actually got admitted to the psychiatric floor of the hospital because my seizures were not showing up on their monitors. Many years later after constant seizures I finally found the right Neurologist and they realized I have epilepsy and I now haven’t had a seizure in two years!! I’m so sorry for your sorrow I truly do understand the feeling!!!
Oh my gosh I'm so sorry you went through that!! I can't believe it!
It’s terrible that we have serious concerns and are treated like we are crazy. I have hair raising stories of being treated like I was high when I was having seizures.
I’ve been there. Doctors don’t look past your anxiety disorder. I actually get frustrated before I go to the doctors because I find it pointless. Girl, I hear you so loud right now. Don’t give up. There are doctors that actually like their job and want to help. I found one for the first time in 37 years, that’s how old I am lol. I’m hoping you find the one that takes it seriously. ❤️
You and Buddy playing at the beginning was just too cute for words! Also your baby is gorgeous, you and your husband must be so proud:)) Good luck with your appointments
God bless and be with u all remember to pray 💓💓💓🙏🙏💓💓🙏🙏🙏💓
Been there done that. Doing that again. And will probably be doing it again. That's the migraine. I got my alert early this morning too. Now I'm doing the lay down thing till sleep comes. Buddy is the reason i started watching you guys. Felt very at home watching you guys. I have a Service Dog too. He is a Mini Doxie Spaniel mix. I don't need big i just needed one who would be determined enough to climb up on the table and he put hos head up to mine and looks me straight in the eye. Like are you going to listen to me. And i hsve a fourteen year old daughter who is the best blessing i have ever had through all of this. Enjoy your time with the little beauty they grow so fast.
Thank you for showing yourself crying and angry after a doctor's appointment. The post appointment despair is one of the loneliest parts of chronic illness for me, and you're making me feel less alone. I'm sorry your doctors are being so shitty and unhelpful. :(
I understood your tears so much. I just got out of the hospital yesterday after being there for three days. I have been having episodes that last for 15 minutes and come every couple of hours where I can’t move and my speech is incoherent. While in the hospital, a psychiatrist was sent to my room to talk to me. After determining that there was nothing they could do to help me, they just sent me home. I have just been crying and trying not to give up. But this video made me feel less alone 🥰
It made me feel sad to see you struggling after that neurology appointment, but I have done the same thing. Being yanked around by the medical community is no fun. I am so thankful for all the support that you have. Much love!
Breaks my heart seeing you cry! I'm not a huggy person but I wanted to give u a hug I feel so bad its not far for u
Omg I loved this vlog so much but besides the point you are literally SUCH a great mom and a great person in general I've felt so many of the struggles in this video but you're just so strong and don't give up and that's literally amazing I'm so beyond proud 🥺🖤🖤 illysm keep being you gen and just know Im so glad for all of the things you do for us 🖤ik how hard it is and I just wanna let you know it's greatly appreciated 🖤
I really enjoy watching your videos. I had my baby last year started getting terrible headaches since. They thought I had a csf leak from my epidural but never did a blood patch or anything. Now I have been diagnosed with migraines and high pressure headaches. I can’t stand the sun light at all. I just want to thank you for making these videos. I don’t think these doctors realize how bad we feel. They automatically assume as well oh your having a migraine because your dad has them by family history. I hope you get everything figured out I know how it feels not to be listened to just this past year. It sucks having a headache everyday.
This is so adorable. I want a whole video of you and your husband and buddy just playing and being silly. :)
We know exactly how you feel after the appointment. You do not have to worry about vent to me at least. I have said all those things after appointments to try to figure out my stuff too. I have one of the most decorated therapists we joke about how over qualified she is and they still don't believe anything is going on.
Also I appreciate your sass. lol The allergy comment had me giggling.
OOH.... Fri-YAY!!!! 🥰 HI Jen!!
Aww what a sweet family you have
So sorry for your experience. Thank you for sharing! Wishing you the best:)
I'm so sorry your doctor isn't listening to you. Sometimes doctors forget that they work for you. They believe that they know what's best for you. Keep pushing, and advocating for yourself. You are strong!
I love your videos! I am saving up for a psychiatric and possibly medical alert service dog, Watching your videos really help. Thank you.
Possible LPT: switch to sulfate free conditioner and co-wash instead of typical shampoo (aka the curly method). Most people need less washes in general. Personally I went from needing a wash every 4 days to needing one once every 14 days due to lessening oil production. 🤞
Lovely video, thanks for sharing. Your daughter is so cute and looks sooo much like you! I too have POTs and chronic migraine, found your channel when I was searching for vlogs about migraine. Shoutout fellow spoonie (who also does her makeup on the floor)
Totally have headbutted the tap when I've been washing my hair. I now have a wash bowl on top of the cabinet which is great so I don't need to lean over so far
Also, having to lay down flat to get relief from the headache is definitely a sign of low CSF pressure which in someone without a shunt most commonly means a leak somewhere. Sorry for the unsolicited medical information but those are the exact types of headaches/migraines I’ve been dealing with for the last 6 years because my shunt keeps over draining
And I’m sure she didn’t know that was a symptom right? No way she could have just said that right. Ya know what would easily put this issue to bed? Having her many “brain fluid” tissues tested for...brain fluid. It’s not difficult. Haven’t heard her say that any doctor has done that to confirm her self diagnosis.
@@baileyturner4143 why are you being so rude and condescending? I was trying to be encouraging to her that her symptoms AREN’T just psychological like adult neurosurgeons and neurologists told me for over a year and going as far as diagnosing me as anorexic and depressed almost KILLING me.
@@TheArmybrat12 why? Because I can’t stand a liar and a fake. I absolutely think that there are doctors of all types that make errors in their diagnosis’ , give people the run around or do it just to play the insurance/money game. I do not believe that is the case here. This woman is waaaaay over exaggerated in her efforts to appear ill, she has been referred to or recommended by more than one neurological doctor to see a psychiatrist and a psychologist, which she is so such isn’t what she needs. I find it extremely hard to believe that individuals who are educated to the hilt on these type disorders, have not throughly examined and assessed her at length. A simple lab test would rule out or verify her claims of leaking brain fluid. Do you not find it odd that nearly every symptom she has is just basic enough that it can’t be proven/disproven? Must be vertical for 2hrs a day-says what doctor? Feels the switch to “Migraine Jen” and onset of migraine-says what test? Or my favorite, dog licks face as signal several hours before apparent migraine onset-says what trainer or paperwork detailing/outlining his abilities? I’d like to see her husband get down in the floor and play with the dog, put his face close down by it and let’s see if this “service animal” doesn’t lick his face too. I’m sorry, it reeks of needing attention and being a hypochondriac. I don’t just take someone’s word at face value. Show the receipts lady.
Your baby is absolutely adorable!
I'm so sorry for the way you've been treated. Doctors don't seem to realize that patients get to the point where they don't care if they're a "pin cushion" they just want answers. It shouldn't be so difficult to get tested like you need to even if it's just to check a possible diagnosis off the list.
You are so incredible. Parenting is hard enough on its own, and you are killing it with everything else you have to deal with daily. You're such an amazing person. Keep pushing for yourself to get your answers. I'm sure there's a doctor somewhere that'll help. Good luck ❤️
The ONLY WAY to fold shirts!
Also, I'm so sorry that doctors are giving you the run around. I have a friend with a starch intolerance that took nearly a decade of misery to diagnose because doctors insisted it was something else and no one listened to her. Don't give up the fight! Keep standing up for yourself!
Crazy props to you for getting through this day! You are an incredibly strong person!
How does a doctor who believes that much in patient advocacy make you have to go to a doctor who doesn't believe you? I'm so incredibly over doctors not believing patients. I hope you tell them about this bs she's making you do, and I hope they are as incensed as you (rightfully) are.
You are not crazy. Hey Jen, I did go to the same stuff as you are ( Just left a comment on the " Migraine Jen Rule" Video, about my diagnose). Over 20 doctors were telling me crazy. But then I found "THE ONE" who made an MRI again and told me before I stared talking what I have and what he thinks my symptoms are at this stage. He nailed it. It took over 2 YEARS to find a doctor to finally telling me what's wrong with me.
I've had to have too many conversations with my therapist about whether or not I'm a hypochondriac (she's adamant that I'm not and I trust her.) I've had many problems building up for over a decade before finally getting them checked out, and I've moved a lot in my life, so when I see a new doctor and take thirty minutes just to discuss the things I deal with, I find that they tend to be subtly dismissive by the middle of the visit because they assume I'm overreacting. It's very difficult during the pandemic, but I find having someone with me (like my fiancé) who is willing to be unmoving and advocate for me when I start to get emotional and overwhelmed and defeated is amazing. He is the reason I've gotten many doctors to listen to me after they'd started to write me off.
I really hope the new doctor takes the time to truly listen to you, and I hope that having to go though therapy/psychiatry again isn't traumatizing; it's difficult enough on its own, let alone with your circumstances.
Omg.. I just cried with you. Doctors not believing you is the worst. Had trouble over ten years ago with doctors not believing i had a depression, they finally diagnosed me so i could get treated. But then my doctor would hardly believe it was anything else when i started getting symptoms of migraine. I had no idea because the symtoms suggested it was my heart. They just kept talking about panic attacks. Then two years ago i found a doctor who immeadiately diagnosed me with migraine. Sent me to a neurologist who scanned and checked me and put me on medication for it within four months. i really hope for you they get it together and start taking it seriously!! Of course your symtoms are real!
"I'm allergic to... Um... Myself" 😂 me too
Omg when you started crying out of, what looked like, frustration I felt that! I have a moderate hearing loss at 32 and trying to get in with ENT has been a 2 year journey of bullcrap! My initial appointment was cancelled due to covid and my 3 other appointments have been cancelled with no reason! I now can't book an appointment myself and have to wait for the hospital to book me in! Its affecting my work life my relationship and I cry whenever someone "makes fun" of my disability! I can't help but understand and feel how you feel.
We're nosey spoonies and we'll be here when you're back!💜
It must have been hard to put this out there...thank you for showing us what daily life is like ❤❤ i hope the doctors figure their crap out soon.
Certain parts... yes. Thank you 💜 & you're welcome!
I'm so sorry they're making you go through these ridiculous hoops to get a referral.
They do it to a lot of people with this condition it takes months some it's life long and
I feel you. I was down Wednesday from a migraine that started at 9:30 pm Tuesday. It's so hard to speak, even think with a migraine. Hugs honey. Keep at it.
Lol I love the hair washing! Most people would just use a dry shampoo
Hi fellow migraine sufferer here! Have you ever tested for mold exposure? I highly highly suggest it.
The nose running all day is a common symptom. Also POTS is common with mold illness as well.
Vibrant Wellness has a urine test.
Your a strong woman a great mom and you know what drs cant get passed their big egos