Misdiagnosis and LOSS OF SELF with Chronic Illness // Good news gone bad

[@LedgerAndLace]

Who are you? An EXPERT in having a chronic illness. It matters less what the official diagnosis is, and more in your own learning and sharing about the illness. You give hope to others who have lost it, or are bewildered as to where to even start. You give guidance for other mothers trying to navigate motherhood and everything that comes with that, while also having a debilitating illness. You give validation to others that the soup of symptoms you experience, are REAL. You are here letting others know: YOU ARE NOT ALONE. You have created a community of kindness and support and I know I am only one person who is very grateful to have found you!

[@melaniemiller1395]

Chronic illness is so all consuming. It's almost inevitable that our sense of self gets intertwined with our diagnoses. I spent over a decade trying to get a diagnosis, to find an explanation of why I felt horrible and why my life was falling apart. And I had hope. When I found out my diagnoses were either incurable or the surgery might make it worse, I spent a month crying. Because I lost the hope that had been carrying me thru the misery. Chronic illness is physically and emotionally complicated.

[@jessicaphillips1950]

I have followed you for a long time because of my own brain issues. Before I even considered it was my brain. I identified with a lot of your issues, and they found a csf leak when they went into for brain surgery. One or the other helped me but I'm forever disabled because of no one listening for years. I identify with the anger and depression so much. Also in therapy dealing with this stuff. Wishing you well. 💞

[@MalloryElizabeth]

I always think about what you tell us and this healing isn’t linear. I feel like I’ve come to a standstill in my journey. I feel like my body’s check engine light is on. So I’ll be seeing a new doctor next month. I totally understand the whole identity thing. I’ve also been someone who needs a name for for everything. Chronic illness can definitely be an emotional roller coaster ride. Thanks for always sharing your story, even if it’s momming with frustration Jen.

[@lauravanniejenhuis4476]

I can completely relate to this complicated range of emotions that go in unexpected directions. I’ve gone through a similar experience with the spiral of depression after finally getting an answer to the cause of the symptoms several times myself. You and anyone else going through this are not alone, this isn’t an uncommon experience.

[@iammellbell]

This is incredibly relatable and understandable. I really relate to how do I even tell people why I'm sick when I don't completely know what's going on

[@GingerKiwiDev]

That you make a conscious effort to provide good, truthful information is why I keep recommending your channel Jen. Even your old videos, pre-CFS leak are great sources of information on migraines and what it's like to have them/live with them. My GP (who's awesome! I won the medical lotto there!), my former physical rehab team are among those I've sent your channel info. The pink couch and "set" looks great - and it complements you're colouring. What you've gone though since being actually listened to sounds a lot like ptsd. Medical ptsd is so common with chronic illness - especially with women (b/c we don't get listened to as much as men) .

[@Vexx_Line_]

You're exactly right, medical PTSD is exactly what it is.

[@Truerealism747]

​@@Vexx_Line_ime a man with chronic.illness.and had years of gaslighting.diagnosed after myself pushing for heds Asperger's add fybromyalgia cfs

[@crystalkeara8868]

I’ve been on the same exact journey since 2006. Diagnosed with migraines in 06 then progressed from there. Finally got my csf leak diagnosis this past June. After two treatments I got significantly better. Still have mild POTS and MCAS symptoms, but not on the daily. Many days can go by without symptoms. Honestly I think I have a spinal csf to venous fistula. High pressure or excursion triggers my symptoms now. Thank you so much for sharing your story ❤

[@laurengallagher1784]

Incredibly relatable. I just had a neurologist appt 1.5m ago and he sat me down and listed all my symptoms basically and said you have POTS (already Dx) and he said he was willing to Dx hEDS and mild gastroparesis on the spot. All he did was recreate my symptoms and told me the tests aren’t accurate and that I’m not crazy. I was mind blown. Now as I’m doing all this testing they found out I’m also iron deficient and they want to start infusions of iron and also regular IVF infusions to help bring up my BP and blood volume to help my symptoms. I was very happy, yet sad to have symptoms for over 10 years and finally being listened to. Over 5 cardiologists and 3 neurologists brushed me off. It took 2 seconds of me googling my symptoms and there is the Dx… right there.

[@Dulcimerist]

Hoping things are going better now. One of my doctors thought I had Ehlers Danlos syndrome in 1996, and referred me to a rheumatologist who just gaslit me and didn't even bother to assess my hypermobility. I was finally properly diagnosed with hEDS in 2013, after lots of time and healthcare dollars were wasted trying to figure out what was wrong with me. Have they tried you on Mestinon (Pyridostigmine) to treat the gastroparesis and POTS? It's a very safe and inexpensive medication that has been repurposed to treat those issues, and is popular with EDS patients since it can treat those two issues while also reducing fatigue and exercise intolerance.

[@laurenfrickman7141]

Hello, my name is Lauren and number one. I have a background in medicine but I’ve had a CSF leak for the last eight years and I finally found a doctor on the cutting edge of medicine. He works with Duke and Cedar Sinai in LA. One thing he talked about when he made a discovery on CSF leaks as he went through the Stanford clinic and looked at people that were diagnosed with pots and looked to see if he could help them, and most of them were missed diagnosed with pots, and they had CSF leaks and we’re cured. I just wanted to pass on the information as an advocate to the Doctor Who I am currently being treated I go get a procedure next week and he’s changed my life. I’ve been bedridden for eight years and and I just got shrooms and and listening to his videos on KZbin he went. The way he figured out CSS versus Potts was from a game in the paper where the doctor from the show house would give a whole bunch of symptoms and tell a story about a patient and the doctor would have to guess what the patient had and and the doctor from house set pots and Dr. Carol from Stanford said CSF leak and Dr. Carol ended up being correct. I am just throwing out information. I don’t know how your symptoms and how you feel but if you’re still having trouble and you want a second opinion, and maybe a chance of being cured rather than living with a horrible condition Dr. Carol. At Stanford I can’t reiterate enough I wish you luck. God bless.

[@dxxl-]

Just commenting to come back 😅

[@cjlange7570]

You have all the right to feel the way you do, it is valid. You are in my prayers and hope you get more answers and quality of life gets better.

[@katelynnwalker2568]

Praying for you Jen! I'm so glad you are seeking out help to work through all this. It's OK to feel what you're feeling. You've been through so much and it's a lot to process.

[@danare5851]

You are amazing, btw. ❤ I am like you . I wont give up . I have a child who needs me too. My mom gave up years ago but they didnt have the ability to figure this stuff out back then. I will continue to watch your journey. Wow.. 2016? Me too! 2021 Was the yr I began the push too! Well the hEDS, Hepots,mcas all dxs started. Its crazy i found your videos. Being wrongfully chronically ill dxed takes a huge roller-coaster belly and brain...and guts, fortitude and knowing your worth to yourself and other family members helps keep you pushings!❤

[@charityrocks]

I hear you. You need to know and understand as much as possible so you can have some semblance of control. ❤ Once you can anchor yourself into what it is exactly you have to deal with then you can begin to accept it and start making plans again. It’s important to be able to make plans as making plans is aka, dreams for your future. Also your channels name is perfect! It is exactly where someone else with your same diagnosis would start looking and then they would actually find the help you didn’t. ❤

[@stacyzlotnick6697]

You hit the nail on the head. You know what I know. The lost time and continued suffering because no one would listen to you brings me to tears.

[@ciliciaging4991]

What you are feeling is justified, and what you’re going through with those feelings is reasonable!! I’m sorry you have had to fight tooth and nail for answers and to not be overlooked. I understand the fight you have in front of you and appreciate how strong you are. And you are strong btw!

[@li-la-lomeyutar8825]

I would like to validate your feelings. I share them. Although I have a chronic illness, I rarely needed to fend against short-sighted physicians (it happened, but not a lot). However, I had to fight long and hard for my children. Their problems were ignored by professionals, and misunderstood by authority. I could not let it go, and found myself explaining to certified professionals, their own field of knowledge. I assume negligence, rather than cruelty. But that does not make it easier. So, yes. I did it more for them, than I did it for me. Just like you. And we got better. I'm so proud.

[@mariposavioleta9007]

I can totally relate! I'm currently dealing with more added stress on top of a flare which isn't helping with things at all. For me though I can't afford therapy and the free stuff here in Canada doesn't have the same quality and there is a very long wait list for it, been almost 3yrs now of trying to get to someone but nothing so far. I appreciate you and your willingness to share with us and support us through it all as we support you.

[@Vexx_Line_]

So much of your life has been lost to disability & suffering, it's unconscionable how the medical community treats patients with chronic complex health conditions. I feel happy that you were able & strong enough to have have children before too much time had been lost. It's been ~25 years 4me. To put one point blunt, the medical community needs to realize who exactly pays their salaries; and denying to order crucial tests for patients should NEVER occur. I wish you & your family the best, and I hope the tests & treatments lead you to the right path. 💗

[@aaronwolf1045]

I don’t know if this will be of any help to you, but I like to listen to the podcast “Terrible, Thanks for Asking”. I don’t believe they have had anyone speak about medical diagnosis/misdiagnosis, but helped me personally to hear stories from other people who experienced all different kinds of shifts to their reality. There is a different kind of grief that comes with working to accept and advocate for what you thought you knew, and then finding out something different, and potentially doing it all over again. I have heard some programs have had an increase in requests for migraine alert dogs, and not everyone applying necessarily knows their exact condition. I can’t say whether or not it is related to you and Buddy, but “Migraine Jen” is still helping people

[@MommingwithMigraine]

This meant a lot to read Aaron and that podcast sounds like one that might be very timely for me 💜 I'm open to my new reality, just need to adjust to it.

[@Dulcimerist]

I have hypermobile type Ehlers Danlos Syndrome and its related issues like POTS, gastroparesis, migraines, pain, fatigue, etc. I may or may not have intercranial hypertension issues, but instead of doing tests we went the route of trying different classes of blood pressure medications to see what helps. Clonidine/Guanfacine ended up helping the most, since it's the most direct at counteracting hyperadrenergic POTS, increases blood volume, and can be used as a migraine preventative.

[@SnowySpiritRuby]

Not directly related to the topic of the video, but because of your videos on the subject, I'm in the process of getting tongue and lip ties evaluated for potential revision - I brought it up with my dentist last week, and she outright told me, "This is actually a really good idea. Let me look into a place that would be considerate of your medical needs." She wants me to have the best outcome possible because I have a complex medical history (hEDS, POTS, and migraine in the mix for me, too, among other things), and she's willing to put in the work to help me do it. That's why she has stayed our dentist even after she moved offices 7 years ago and her new office is twice as far away - 20 years now we've been with her, and I won't be switching unless I have to. I just wanted to say thank you for talking about it and showing your tongue tie, because I had no idea I had one, too, until I saw yours, which looked exactly like mine does.

[@MommingwithMigraine]

Ooohh thank you for telling me your story. You're welcome! I'm planning a follow up video soon because it's been a year but I'll give you the punch line- so glad I did it!

[@SnowySpiritRuby]

@@MommingwithMigraine Can't wait to watch! I know at least one of your girls had it done, too (can't remember whether it was both of them or just one), but with laser, so maybe a little update on how it went with laser vs. non would be helpful, too. I don't know whether I'll have the choice of which technique they'll use, but in case I do, I'd love to hear how it went for others. And I kind of had the same reaction (minus the depression, I guess, or at least mostly - might have been slight (I don't remember - it was almost 4 years ago), mostly from specialists just refusing to believe me, even though I had hard core proof that something was wrong - gaslighting was definitely involved: the neurologist and first 3 cardiologists refused to even order the testing, even though my primary and I both wanted it done - none of them wrote it off as anxiety, but some did write it off as other more hurtful things, and some just outright lied on their reports) when I finally had a TTT done for the POTS - I was glad that I could finally say definitively that I had it, but was thoroughly unamused that I had been blown off so many times by cardiologists and a neurologist who just didn't care: what should have taken 2 months took 14 (had to work around school and being out of town precisely because it took longer than those 2 months); my primary was the one championing me through the whole thing, so I had at least her on my side.

[@Sophie-kn3gh]

I had my tongue tie snipped and I definitely recommend!

[@MommingwithMigraine]

@@SnowySpiritRuby Good memory - both of my girls had theirs done! No regrets there either. I can't believe you also ran into professionals who did not take you seriously. I am glad your primary was there for you and I hope your team has filled out now that you've been diagnosed.

[@SnowySpiritRuby]

@@MommingwithMigraine Good to hear - I know their recovery was a little different (you mentioned having to stretch or move around their tongues around but not having to do it for yours) because of the different technique that was used, so it would be helpful to hear how that went/compared. And I'm still working on it - I grew up in the Twin Cities (which has tons of networks with tons of specialists), but I'm now living in WY and in an area that's a minimum of 2 1/2 hrs from any of the bigger cities (Cheyenne, Casper, Laramie, Jackson, Sheridan, etc.), so there are only so many options for specialists, so filling out my team definitely hasn't been easy - thankfully, at this point, we've been able to handle basically everything with just my current primary (who lives and practices in my town), my former primary (who has stayed on my team as a specialist, even though she lives halfway across the country - I grew up about a mile from where they used to live, and her kids and the kids in our family were in the same grades and school from kindergarten through 12th grade; she's the one who diagnosed the mold poisoning for me), my chiro, and my dentist (will be outsourcing getting my mercury fillings replaced sometime in the next couple months to a different dentist's office who uses the correct protocol, but I'm staying with my current one for everything else); my orthopedist has also been really great (he was the first one to tell me that my joint issues might have a genetic cause, which eventually led to the hEDS diagnosis), I just haven't had to see him in almost 2 1/2 years. I've had various issues (including gaslighting, shaming, and outright lying) with the neurologist, cardiologists (including the one who developed the TTT in the first place - he was the one who over saw mine), ENTs, and pulmonologist, so none of them are currently part of my team, they're just ones I've seen in the past. If my pulmonologist apologizes for one particular thing he said at my last appointment with him a year and a half ago, I'll let him back on the team, but the rest of them have no chance of being let back on. Because of that, we still don't know what is causing my seizures (not bad enough to keep me from driving - I've learned to drive through them, out of sheer necessity, because we don't have any public transportation here and I can't just get a ride everywhere - but still frickin' annoying to deal with and can be a bit scary for other people to watch). Really wish I had more options for specialists close by, but that's one of the tradeoffs of living in a small town in the middle of rural Wyoming (which I would not trade for the world); and besides, some of my team are still in the Twin Cities, like my chiro and dentist, so I can see them whenever I'm visiting my parents, which is a minimum of twice a year.

[@AnnikaOakinnA]

Apologies for the long comment, but I just wanted to validate that all of this makes complete sense to me and I relate a lot. First of all, when you're wrapped up in fighting for yourself and your needs, all your focus is going towards that. You often don't really have the time or energy or attention for feeling all the trauma and pain and frustration -- you have shit to do, and getting bogged down in that will take away from progressing towards that critical goal. Once that goal is hit... that energy is no longer being used, you no longer have that outlet, and you're suddenly *safe* to feel that trauma and really cope with it. It's super super super common for the traumatic response to intensify *after* the trauma is over, or like for therapy to make things feel *worse* initially because you're engaging with and digging into the trauma instead of avoiding it or pushing through it. Secondly, you're getting validation that you were right. You were right to push, you were right to advocate, you were right to keep searching. And everyone who told you otherwise, everyone who told you to shut up and sit down and move on, everyone who refused further testing or further research or further treatment -- they were wrong. They were *wrong*. They shouldn't have ignored you or brushed you off, they should have listened and learned and tried, and that's infuriating. You have every right to be angry, to be hurt, because these doctors have hurt you. I experienced a trauma when I was in middle school that I didn't recognize as a trauma until university, and so I didn't really unpack it until then -- seven years later, a part of me felt like I should be "over" it, but how could I be over something I hadn't even identified as traumatic in the first place? Only when I finally processed that hey, this was messed up, this shouldn't have happened to me, I deserved to be safe from this -- only then did I start to experience that grief and anger, and ultimately healing and feeling stronger and more certain in my convictions. I wasn't just being silly for wanting to avoid things that reminded me of that experience, I was protecting myself from legitimate triggers. And as for the identity stuff, I come at this from a queer lens rather than a disability lens, but I've often thought of labels as a) fluid and b) yours to define. Like yes there are Literal Scientific Definitions, but even those are fuzzy and vary from person to person and change as we learn more. I think if calling it migraine is helpful, even if it's more of a symptom than a disorder -- that can be okay. You can go into more detail when it's relevant, with doctors or with people who you want to expand with, but as a simple blanket statement -- you have plenty in common with people who have standard chronic migraine, in terms of symptoms or coping mechanisms or tips, even if it's a different root cause. And even people with standard chronic migraine will have plenty of differences, what helps one person might make things worse for another person and vice versa. I also think if you want to stop calling it migraine, that's okay -- it doesn't mean that you were wrong or that your identifying with migraine wasn't real. It was a part of you and a part of your understanding of yourself and a part of your journey to where you are now, and that's important and real. I used to identify as demisexual, then acespec, then asexual, and so on and so forth. None of those labels were wrong, they were all part of my journey, and I'm grateful for all of them. Even with my current identity, I don't know if it's 100% perfectly accurate, but it's mine for the moment. Your identity is yours, however you want it to be. Again, this is an essay so I have no idea if you or anyone else will read it to the end, but TL;DR this is all super valid, I feel you, I love you, I believe you, it's okay to feel and be and cope however you need to.

[@daniboyd8020]

Thanks for sharing!! I can totally relate to this. We want the answers to what we’re searching for but then when we get it, it almost triggers us to feel a different way.

[@MommingwithMigraine]

So true Dani!

[@Christinesobsevations]

So very relatable. Thank you So much for all you do ❤❤❤ I’m in the midst of fighting for a dx . Neuro agrees it’s time to check for IH . Six long months with this craziness.

[@asecretcourtofcrowsandcloc4084]

It makes total sense that after fighting for xo long for people to belaive when you finally got the answer you were expecting it was jarring it made you frustrated over lost time

[@MommingwithMigraine]

I'm so glad you friends understand

[@luanngordon8639]

Thanks, Jen! Great to see you back!

[@MommingwithMigraine]

Thank you! Hope to be more regular soon, we will see!

[@juliebey8240]

You’re beautiful and smart the way you are Jen. 😊 I have been dealing with a new health issue where the neurologist says it’s vestibular and the ENT doctor says it’s neurological 🙄. When I reminded him that the neurologist sent me to him because it was vestibular he said , “oh, so you’re a doctor now”😳😡. He said maybe I should get a new neurologist and I told him I already did and that the first one said there was nothing wrong with me. He just rolled his eyes and gave me the impression that he thought I was doctor shopping 😡😡😡so frustrating!!

[@electriclilies2642]

Yeah sounds like you need to fire that doctor

[@shannonmorgan3270]

I’ve was just diagnosed with having a csf as of this morning they released me from the hospital this afternoon to do outpatient appointments with a neurologist/ neurosurgeon / ENT Dr. come this Monday cause they had to order whatever goes in the dye for the mri to figure out where it’s tore at been dealing with this a little over a month can’t even imagine years! I’m feeling so terrible and I can hardly concentrate on writing this! I’m hoping to feel better soon cause I’m not sure I can take much more but I’m also worried because they sound like they have no idea how to go about doing this and it’s a big hospital with lots of good things to say about it just not sure if their too knowledgeable with csf’s! I’m not going to lie I’m scared

[@cristy6513]

What ere the results from your mri

[@AngieNTheComettes]

Therapy is very important during treatment. Thanks for speaking about it

[@MommingwithMigraine]

My absolute pleasure. I couldn't agree more.

[@DevinShoulders]

Hi. I’m in a similar situation but my leak is tied to having scoliosis, which further complicates thing becuase they assume you can’t cure the leak because it’s tied to that. You give me hope that I can eventually get someone to help me. I literally know what’s wrong with me and just waiting for someone to help me

[@thelighthouse1604]

Jen your video you just posted. Explained why after I was diagnosed with epilepsy I sunk into depression. Because for years I was miss diagnosed and misstreated because my seizures aren't Tonic clonic/grandmal. They are absent, focal aware, and night seizures (rare). On top of complex migraines and fibro.

[@MommingwithMigraine]

I'm sorry you were mistreated. It seems more common with atypical presentation... complex migraines don't help 😮‍💨💜

[@deannaroberts2387]

Have you already done testing for a CSF leak and if so when will you find out the results? I thought you had mentioned doing the testing for it several months ago on Instagram. I hope you get answers soon!

[@MommingwithMigraine]

Hi! Yes and no. I can't get enough fluid collected to test whether the nasal drip is CSF, but we have done brain, cervical, and thoracic MRI and need to complete lumbar. Usually the MRI doesn't show the leak location but mine is "indicative" of a leak (my most recent brain MRI video). Dr expects after lumbar MRI will be CT myelogram and then an epidural blood patch.

[@51monw]

Just directed someone your way from a migraine forum, because their issues sound a lot more like a leak than like my migraines. In retrospect "momming with migraine" may not be medically accurate name, but it is not as if you are the only one to tread this path, and you've signposted it so well for those that follow, I'm happier to direct folk here than anywhere else for the topic. I'm in a much better place now, in part thanks to your videos, okay probably more of it is down to Ajovy, and adding Liothyronine to my thyroid replacement, but I had a better idea how to understand neurologists.

[@crystalkeara8868]

Diamox can help some people heal there leak. Lower pressure can help the healing process in some cases

[@ciliciaging4991]

I commented on another video but wanted to watch your most recent video and comment here too. Is it possible you have EDS? If you want I can share some information on the testing that’s done for diagnosis to see if it gives a more clear picture. Connective tissue disorders present with symptoms you talk about.

[@erictaylor5462]

7:00 Watching your videos would only be heroic if they were boring videos. The fact you have more than 30000 subscribers prove your videos are not boring.

[@danare5851]

Is there any way for you to share this Drs name?

[@heatherlemon4756]

OMG I’ve missed you lady. 🥰😘

[@MommingwithMigraine]

AYYOOOO thanks for the warm welcome! Hi Heather!!

[@coleenbuitendyk8626]

Hey Jen, I just wanted to say thank you for your last two videos. Having just started my own channel I was wondering how do you choose your content each week, and how much do you research before you record it?

[@MommingwithMigraine]

Congrats on starting your channel!! To be honest I'm sort of on a whim these days. This video I was going to plan this day and film the NEXT day, but planning at the computer was making me anxious so I decided to talk to you instead. That's why my hair was dirty and in a ponytail... wasn't even filming time 🤭 Other days I usually have a few written out, & at film time I pick something I already have ready based on what feels most interesting in the moment. And if I'm not feeling it I film another day!

[@coraliedubois5890]

Just curious... If you had stopped pursuing it, how did you come about this new leak specialist who took you seriously?

[@MommingwithMigraine]

He saw my channel and thought I should be evaluated. He's not the first doctor to reach out to confirm that I should get a leak evaluation, but he was the first one to say it AND be able to do it for me.

[@Sophie-kn3gh]

Have you had a spinal tap? If not, curious how you got to try medications without those results. Navigating doctors, especially neurologists, is so complicated sometimes 😞

[@MommingwithMigraine]

I've never had a spinal puncture of any kind, including into the epidural space.

[@naomifourie9016]

Uhm. Do you have a leak and high pressure? That's impossible. It's high, or it's low, and you have a leak. If it's high you will have light spots in your eyes permanently. They are not just there while pressure is high. Leaks repair themselves over time. Leaks go through your nose. On high pressure part of your brain gets squashed and they can see it on the mri. Have you ever had a neck injury? They should colour your csf and then mri your neck to see how the fluid goes in and out of your brain. The full test for IIH is a MRI, with colour, on this they can see leaks. 2nd is lumbar punch to check pressure. This can cause a spinal leak again, which could be fixed with a blood patch. They however mostly repair themselves in 2 weeks. Tell me if you find out what's really wrong, because I have been through exactly the same stuff. I can't afford the costs anymore so I just stopped years ago even trying. Atm I have two attacks per week. It's like ocular migraines. I was sick for 5 years, struggling with diamox and MRI, you name it. Then I had a mental breakdown, as I had two kids through all of it too. Been recovering from the mental breakdown and then the migraines started hitting hard again. I went back to the ophalmologist to check my eyes as I started seeing lights again. She said, yea maybe this is just how your eyes normally look, the nerves are pushed into my eyeballs Anyway. Maybe I'll go to the neurologist again. Maybe not. Stuff them. In the meantime I'm going blind. I will never go on diamox again, it's the most horrible med imaginable. I still am struggling to normalise my body vit levels and my kidneys are broken. Make sure it's not anxiety and try setraline with a bit of mood stabiliser. Will hurt less than stuff like diamox.

[@Truerealism747]

Do you have heds thinking fybromyalgia my worst symptoms.24/7 though my fybromyalgia deals better to press.in.the painful area a suppose it's clamping.the triggerpoints

[@keetyalexx]

This has nothing to do with anything, but the artwork behind you looks like an abstract ace pride flag, and I love that. Also, I totally get the identity crisis feelings. I’m actually afraid of being told my IBS is something else, or having my tachycardia misdiagnosed, because…I’ve worked those things into the fabric of myself. I don’t know what life looks like if I have to undo those weavings. It’s terrifying. The IBS I’m confident is right. I don’t know what my heart is doing. But whatever comes next, at least we’ll know who we are, and that doesn’t negate who we used to be. You don’t know what you don’t know. You do the best you can with the information you have. That’s all any of us can do. Good luck, Jen! ❤

[@TinyPigy282]

I am slightly concerned about your sponsor for this video. Many have had extremely detrimental experiences with this service. I'd proceed with caution

[@meluvfriends]

Came to say this too, and hoping no one attacks me for it. You do the best with the knowledge you have, so Im sure it isnt malicious so I just hope she will do some more digging. Its so hard because I also understand how important sponsorships are for channels like this 😫😬😬

[@CreatingFamilyCode]

I was overcharged by them by $9000 randomly and they said won't be seeing it back. On top of that my therapist ended up being one of those people that slipped through that had none of the qualifications they claimed and wasn't who they said they were....hence the $9k, and BH doesn't know who they actually are because all their info was fake.

[@CreatingFamilyCode]

But I also know ppl who have greatly benefitted with their therapist

[@MommingwithMigraine]

Sorry to hear that you have heard of bad experiences. That hasn't been the case for me. I wouldn't be where I am without betterhelp. Having easy access to my therapist has helped me during some very dark times over the last couple of years and I share it for that reason. Certain aspects are unprecedented and innovative 💜 [edited for typo]

[@CreatingFamilyCode]

@@MommingwithMigraine I absolutely get it and like I said I have seen on no people who have had the most amazing experiences. One of my therapists was amazing and unfortunately she ended up getting COVID and passing so obviously that's not the norm. I had been having a wonderful experience with them until my last therapist, so I am extremely glad for you that you are having a good experience and I hope that continues. I'm not meaning to crap all over your bad experience for sure. I am so glad that you are getting the help that you deserve because you do deserve it and I understand so much of what you were saying in this video so I'm so happy for you that you are getting that help you deserve and being able to process and get through to the other side of all of the hard things. It's so weird when you've been hoping for something and working for something for so long and then you get within reach of it or you get to it and then your brain automatically goes to the exact opposite of how you thought you would feel about it. Or thank you should be feeling about it

[@Sophie-kn3gh]

❤

[@zakyvids6566]

Is there anyway to contact you please like an email . I have something to share with you that you may potentially find helpful also I’m completely new to your channel I too have pots Thanks heaps

[@MommingwithMigraine]

[e-mail] 💜