Hair Loss In Women * Phanie Talks Autoimmune Disease

  • Posted on 01 August, 2020
  • Pixie
  • By Anonymous

I'm Phanie (with a P) and in this video I go over the process of my hair thinning and balding as a woman. Here's the videos I mention if you want to watch those too.

MYASTHENIA GRAVIS MEDICATIONS: https://www.youtube.com/watch?v=To6qFN...

GETTING MY THYMUS GLAD REMOVED: https://www.youtube.com/watch?v=EWX8Z9...

15 YEARS TO MY DIAGNOSIS OF MG: https://www.youtube.com/watch?v=1d561l...

Oh hi, it's me fanny. I am here for my yearly video update about my life, my health. What have you perfect? My last video was just shy of a year ago, so we're right on time. You know what i'm saying today's topic is: hair loss in women with an autoimmune disorder, or otherwise i mentioned it in the last video i had, which was just shy of a year ago. I went over the types of medications that i was on for my autoimmune disorder. Myasthenia gravis i'll link it wherever the hell. It is probably in the description, you'll notice in that video. My head is where my half my head is shaved, like both the sides of my hair were shaved. This is how long it's grown since then um, but i had said that i had been losing my hair and that's why i shaved it off and it was because of in theory of one of those medications. But that might not be the case. You really don't realize how much your hair is just part of your identity and part of your entire personality. I didn't realize that until it started to all fall out - and there was like this big, weird grieving process that i've gone through um at this point - i'm over it. I think i'm i'm not grieved all the way. It'S just like a sore point every day, trying to like put it up in such a way that oh, you can't see that bald spot delicately parting it and doing so much work and like going into the shower and still having handfuls and handfuls of hair. Like it's just too stressful, so i'm just gon na shave it off in preparation for making this video. I did kind of a bit of research about my own hair to see what my go-to's are and i really kind of had two ish styles. It was like my hair was lightish blonde or like medium blonde with maybe some highlights. It was all box dye um and it was probably like a bob so like to my chin or a lob as i'll call this, where it's like a long bob or like really really long and full of braids. That was kind of my go-to. I didn't really do darkish hair, though there was apparently my hair takes to bleach really well, which i didn't know until i had my hair accidentally bleached on three separate occasions, being like oh just a little bit of highlights and then being like taking the tin foil Off and being like, oh and then having to dye my whole head, that's happened to me three times. I definitely realized that i really liked sort of a dirty blonde, color and definitely kind of a gingy color. I guess i was kind of jingy as a kid, but not really, but i love it. I wish i was a ginge, i'm a ginger heart, especially considering how pale i am i liked doing like fun braids. I learned how to do like a crown braid. I learned how to do. I was doing braids all the time and that was my jam. Oh there was one time um in my early 20s, where i was like. Oh, i'm feisty, i'm going to do like a pixie cut and i did have like some interesting haircuts a little bit here then, but mostly it was just like this length, same-ish color whatever, and that was just what i liked and easiest to do. I always did yeah box dye, never really went to the salon because they kept accidentally bleaching it. Whenever i would end up going to the salon, people would always say like well. Your hair is really fine, but there's a lot. You have so much hair, and you know you know the the the diameter or you know the width of your hair when you like, pull it back and put it in a pony or whatever, like you know how much hair fits here and i started to realize. I think about early 2017, like this, is getting thinner. Oh there's more hair in the shower interesting, i'm not sure, didn't really look into it. Didn'T research, it just hoped it would come back and cut it. I had long hair. It was really really thin, like pressed to my scalp, and i cut it like like the short like chin length bob and then i kind of let it grow from there and it did kind of, i think, come back so yeah. I tried to be a little bit more gentle on my hair. Oh mr t, hello, breaking tea escaped this morning. I woke up and there was, i don't know it was windy. I don't know what my door was just wide open and mr t was gone and then i'm like about to burst out in tears. I'M, like, oh, my get all my winter clothes on, because it's still quite cold outside, even though it's may and then i open the door to go, find him and he was just like i guess under the car he just like walks up being like. Oh hello. This is this guy, so it was about august 2017 that i cut it quite short and, like short, not pixie before, like short about my chin and then just kind of waited and see what would happen and it did seem to be coming back a little bit. You know you have that like sort of halo effect of baby hairs kind of all around your head, i definitely had that it was coming back in and that was good stuff and then i guess the beginning, yeah so the beginning of 2018. I think right in january maybe end of january. I would pull my hair back and it would just be like bald here. I'M like. Oh that's new. I thought like it was. You know. Eight months later, i thought i was doing really well what happened here and around that time. I was also struggling with um some other symptoms. I don't like i feel so far away ago. This was like two years ago, but it was like. I had pretty severe joint pain, um and i went down the track of finding a rheumatologist so that continued to get really bad and i kind of was in the same spot. I am in now where i'm just like. I'M i'm done with this. I don't want to deal with what i'm distracted, oh he's, looking outside being like. Oh, i left this morning. Okay, i was at the same point that i am now where i'm like shave it off i'm sick of it. This is just detrimental to my mood. Every day, waking up and seeing this like stringly little hairs and then like delicately like brushing it in a certain way and just wearing hats all the time. Like nobody look at me, i'm like no, i want to be badass. I want to like my hair again. So i went to a salon and did like crazy cuts. I would constantly go and get my head shaved like the sides. Do like a cool fade. I had different colors at the top. I was like blue and then i was purple and i was red and there was like orange and that lasted like i think six months i burped um, but then i feel like i kind of it felt, was empowering i guess to have badass hair, but it Felt kind of exhausting and very like look at me and that's not really my vibe as much anymore, i'm a vibe or whatever. I don't really want to be. Like look at me, i guess with colors more power to you. I just i'm very awkward and i don't like to be seen or noticed. Maybe that's a flaw whatever so i decided i i've always liked having just like the gingy hair. So, as i was kind of letting this grow back in, i did notice that the side pieces, like the baldy parts, were growing back in. So i'm like okay, that passed kind of like it did the first time that went away so or is slowly coming back. My my now my hair's all short here and i'll grow it out with the rest of my hair. So i dyed my hair sort of like a gingy color. Let it grow a little bit, but it didn't really come back like last time. It didn't really like thicken back up as much and i was still really self-conscious about it, but around that summer that fall. I decided to bleach it because um i found - or my theory was that yes, my scalp was showing, but i'm pale as hail. So if i bleach my hair, you won't be able to see my scalp as much and it worked that did happen and i like rocked her like a bleached pixie and i felt like a badass again and um. You couldn't really see my scalp. I was like a lot less self-conscious if i just like tossled my hair, in a certain way before where my hair was like a dark color or even my natural color, which is kind of dark um. I would be like, oh my god, i'm trying to find a hat or whatever, but when it was bleached, i'm like. Oh, i don't even have to worry about that and then i continue. Oh yeah, i was even um in a wedding i was. I was a woman of the groom, it was beautiful. It was amazing wedding and i had a great time. I looked very like old hollywood, but um, it's very expensive, to keep dyeing your hair. I knew that from i think. The first time i started to dye my hair, like the bluey, color or whatever, and did all the shave it was like 200 and some dollars the next time it was like, maybe less than 200, but more than 150, like it's expensive and even bleaching. My hair just doing like root touch-ups not like the bright colors, was still probably 150 every time your roots come in and it's like it's. It'S i'm a very low maintenance kind of person, and that was just not my jam, oh yeah. So when i was doing the research of like i have all these pictures of my hair, i'm sure you've seen them sprinkled all over the place. Uh. The last time that i bleached my hair was exactly to the day part me. It was like 364 days. Um was a year ago, so, one year ago was the last time i bleached my hair. I did like a cool tone as in, like you know, like a bluer tone. I decided after that wedding was over and nobody really needed just i didn't need to be seen. I work from home. I don't go anywhere so i'm like whatever i'm just gon na hide at home and have sad hair whatever. So even i was trying to be a lot more gentle on it. I wasn't bleaching it anymore. It was really taking it easy, like i feel like that's. Probably the most harsh thing you could be doing to your hair is bleaching, it all the time and and it continued to fall out it continued to get really really thin all across. So, as i said in other videos, i am a canadian. The healthcare system is very slow, so all of this stuff - it's like i could be like - go to see my general practitioner, my family doctor, and be like hey. My hair is falling out. I'D like to see a specialist and they're like okay and then they refer me to somebody, and i see them within three months. We do the like intro meeting, do a bunch of a bunch of blood work and then i come back in another trip like it's. A very long process so because of the joint pain and because my hair loss, i did eventually get a rheumatologist and i did get referred to a dermatologist around february or march. I realized like this is bad. Like my hair, it's like the bald spots went way way far back like if i were to take all of my hair into a ponytail it'd, be like a it feels like a dying circumference like there's. Barely any hair there like it's, just super super thin, even though i'm trying to be super gentle with my scalp like this is a problem, so the question of what is causing this is. I have no idea um, my doctors don't really seem to have an idea and because it takes so long um when i was starting to get answers and starting to get results back um, it was the pandemic. And now i saw my rheumatologist and she's like oh okay. Well, i have all this blood work for you. She sent it to me and she's, like i guess, you'll get it done in like i think it says september. So, like i don't know, i don't know. That'S where i'm at i don't have an answer to be like, and then it turned out it was this and then i solved it. You just assume that you have a thing that you know you have hair, that's just how it is, and now it's just it's just just maybe gone. I feel like people always make fun of dudes when they go bold like it must be awful. I feel like it's awful, it's like shitty, it's a very emotional thing. I really didn't realize how much having like long gingy, braided hair was so like part of my personality and then that was sort of taken away from me. I don't even really know why, as i mentioned in my last video, i was kind of thinking that my immunosuppressant immuran was the cause of my hair loss, just because the timing kind of synced up - and maybe it is, but i found that i would lose hair When i upped my dose and since that video i rewatched, i've been on the same dose, so maybe it's making my hair fall out, but because it's my hair loss is so like intermittent, i kind of doubt it who knows uh. I also i am seeing a rheumatologist and i have been they've been trying to see if i have ankylosing spondylitis, which i had an mri and that i do not um they're saying i might have rheumatoid arthritis or lupus um. I have like a positive, a a, but that's. I don't even know what a a stands for put it somewhere uh. That'S. I already have an autoimmune disorder, so that's probably al always gon na be positive um. I have some other things positive. What was it sjogren's syndrome? I have some sort of positive result for that and that usually goes hands hand in hand with lupus or rheumatoid arthritis. I don't know so when i did speak with my rheumatologist telehealth is dope. Actually i had a telehealth call with her. She still needs to get blood work to be able to make some sort of decision. She hasn't even seen me in person, because i switched rheumatologist. That'S another story for another time. Um she said if she had to, she would call it mixed connective tissue disorder, which is kind of like you have like a smidge of an autoimmune disorder, but not enough to make all of the qualifiers. So they just say you have mixed connective tissue disorder. Oh goodbye, ms t um and then i did see a dermatologist, and that was i had mixed feelings about that. Overall, like he was a very nice man and i respect him and appreciate him, but he seems very salesy. A lot of the things he recommended are very expensive and the limited research i tried to do like there isn't really any he's like. Oh these things work really really well and i'm like well, what are they can? I learn more about it. He'S like. Oh, it's like a patented technology, i'm like well. What is the patent they're like? Oh it's on you can so i don't know what any of this stuff does and it's gon na be thousands of dollars. He said that it also could be um alopecia areata, but he did a biopsy and he said no. That doesn't seem to be the case. He was like looking at your biopsies. This just looks like regular um. What'S it called androgenic alopecia, which is just like, like male pattern, baldness or like hair loss or like thinning in women, he's like that's what it looks like i've lost like over half my hair in the course of like two or three months. That'S i'm gon na doubt it um, or maybe i don't know i'll - have to look at the women in my family, be like y'all have thin hair what's going on, maybe do i just like hit? What am i, how old am i put it on the screen? I don't know, i think, i'm 31., really you lose half your hair 31, all right um. So who knows but then i did some research on my own being like types of alopecia and there's a thing called telogen effluvium, which is where you lose your hair from um, an illness or stress, and he did not talk to me about that. I kind of assumed that's, maybe what it was because, like maybe i do have lupus i'm just undiagnosed and that is causing my hair to fall out, or maybe somebody had like a really bad virus or you're really sick and your body's in sort of, like a Stress mode and then your hair falls out, but i thought about it and i'm like. I really literally only realized this like a week or two ago being like i had a super [ __ ] stressful um christmas. I [ __ ] hate christmas. I'M sorry! If that hurts people's feelings or pardon me, let me say: canadian, i'm sorry if that hurts people's feelings, but i hate christmas. I never liked it. It makes me feel like just this, whatever it's just a quirk of mine, whatever it makes me so stressed, and then i had a ton of other just trash just trash going on like just stressful stuff. That made me feel awful and like anxiety to hear you know when you can like physically feel anxiety all the time, and it's just like it's in it's part of your body and it's there. That'S. I felt like that for maybe a month and a half straight, not entirely related to christmas, but it was there as well. So when looking at this telogen effluvium, it can take up to like three months for the stress of your hair to start falling out. I'M like, and then i tried to kind of go back with the other periods that i had lost, hair and maybe lines up. I don't know i don't have any answers, like maybe um, so the first time i really started to fall out was like mid to mid 2017 and then the only stressful thing i could really think of was i had my thymectomy, which oh look there's a video. Whatever um click that i so maybe that was super stressful, even recovering, so that was about maybe like mid or in september. I don't remember um and then it took me. You know a long while to recover. So maybe that was what was stressful and made my hair fall out originally, but that feels like a long window like september to like, may i think i got my hair cut in july of 2017., so that feels like a long who knows, i feel like i'm Just grasping and second guessing myself - and i also it's probably the case honestly - this stress that makes your hair fall out, but it just feels so shitty to be like this is your fault. Your hair is falling out. You need to work on your stress levels like lame and it feels like it's it harkens back to when i was trying to get diagnosed with my with an autoimmune disorder, and i was eventually diagnosed with my senior gravis after 15 years. Here'S another video whatever um! That'S what people told me i'm like, i can't use my hands. I can't feel them they're numb like. Is it just stress and it's like it feels so dismissive, but also like it's probably true. My rheumatologist can't really. Oh, my battery's dying well turns out you're supposed to charge the batteries of your camera good thing. I have two, this one doesn't autofocus. So if i'm out of focus, i don't have to tell you - i haven't seen my rheumatologist, so she doesn't really have any recommendations for me, but i have this huge long email that i printed off, like a boomer um that my dermatologist recommended to me. So i'm gon na quickly go over those. This i'm gon na read this first like paragraph that he sent me because i found it interesting and i'll go over them. I'M not gon na. He wrote like an essay for all of them. I'M not going to read all that so he said there are five treatments that have good medical evidence to their benefit. When choosing an option that works for you, we need to consider the effort needed to do it like daily applications, the cost in time or money and the possible side effects. Hair loss is generally a steady, progressive loss over your lifetime. So most options have to be continued to maintain your hair, so i think that tends to lean towards men, but it could. It also mean me the thing that he lists all of these sort of like scientific research, things that say, like 86 of men, will see. Stabilizat, all of the research that i could find is for men like none of it is for women, and it's really frustrating. They have no idea when it comes to women like how things affect like where they are in their menstrual cycle. All the different hormones that women have there's a lot less testing. What'S the tea, what are you doing? Oh he is hang on. Mr t is going into a shopping bag. Let'S give him a minute cool of the five treatments he recommended. The first one is topical. Mr t, so the topical one that he recommended is minoxidil, which is also known as rogaine, and i don't know i don't give a [ __ ] about rogaine the research and the testimonials that i found of it. Is that basically, once you stop applying it that your hair is probably going to fall out again, he also said that there were two types of medications that i could take and i'm trying to dial back my medications. To be honest, i'm trying to do more physiotherapy and do more exercises to manage my my senior graduate symptoms and i've been having a good luck with that for sure um, i'm already on mestan every four hours, i'm already on an autoimmune suppressant. I just like again it comes down to research about these kinds of things like who is researching. If imuran affects this two of them, we're called one is propecia and one is aldectone. I don't know, and again it's like a lot of studies in men, this one's like common side effects, decreased libido, depression mood, changes whatever erectile dysfunction. Oh, at least i can't have that, but i just i don't want to mess with something that's to mess with my mental health, let alone all of the other medications i'm on. I don't know if i mentioned in my other videos, but i do have some serious mental health issues and even just little things like the birth control pill made my depression so bad, i don't like taking medication, and just being so unsure of my mood like am, I actually depressed do i need to do some cognitive based therapy and whatever try and do some meditation? Is this just? Is it a shitty day? Am i actually depressed? Am i depressed from something else like second guessing your actual mood and mental health, because of something you're taking is just such a pain in the ass, and i did it for birth control? Just because that's what everybody does as a as a woman um, but i decided i don't want to do that anymore and i don't know if i've mentioned this before, but i am sterilized. I cannot have children and maybe that's another video. I guess my hair is not as important to me as not being pregnant is, which is fine. I get whatever that's my prerogative. Okay number three! This is the one that oh wait now, i'm just gon na skip to four. He said uh platelet, rich plasma is an option that can work with people, but that's where you like take out part of your? No, don't you, whatever. That'S where you take out some of your own blood. I think in your plasma and you take tiny little injections and like put it back into, i don't know if they do it like actually into your skin or just rub it on top. I don't know what it is, but he said because i already have an autoimmune disorder that um my body would probably attack it and that in some cases, people without autoimmune disorders get some sort of reaction because of this procedure. So it's just like that's not even on the list and then the next one that gets into the expensive area is uh laser hats. He recommended one that was like two thousand dollars and one's thirty five hundred dollars in music and they work really well. You just wear this, like laser hat, for what ten minutes a day every day and it helps stimulate your hair and i'm like what it's so expensive. Maybe i'm just crazy but, like i tried so hard to find research about it and it was like. I could find several studies that said it did nothing. I could find some studies. That said, like i think it might have helped. I was not very excited about it being like. Oh i'm gon na spend over three thousand dollars. Mr t, i'm gon na spend over three thousand dollars for, like a maybe hit me up in the comments. If uh, you have some like studies or something or good experiences with the laser caps, laser energy stimulates and increases micro, circulation and follicle healing, and it's again it's like stabilization. It'S not like it's gon na make my hair grow back. It'S gon na make it stop. It'S like, ah and then number five that he recommended is hair transplants. I don't wan na. Do that. I don't wan na have surgery. I don't wanna have to be like. I just don't want it just feels like a lot like. I just don't know when my hair loss is going to stop. Maybe it's done, and this is it you know. Maybe i learn how to de-stress and i don't get super stressed out and my hair never falls out again, and this is like the worst it'll ever be, or maybe it's just going to keep happening and then i'm going to have to keep getting hair transplants, like The average transplant ranges from 1 000 grafts to 2 500 grafts and cost ranges from 5 000 to 10 000. It'S just like okay um! That'S, i don't know, that's a lot of money that i do not have, and that's just a lot like, so that dermatologist fella um recommended these products to me. They'Re like a these are the ones that i was talking about earlier. Um they're, like with our patented hair revitalization system, and i'm like okay. Well, where are the ingredients? I look on. No there's no ingredients on this bottle. There'S! No! I don't know what it is. It'S called pro clinics um and there's a spray that you're supposed to use every day. I guess i could continue to use it, but it's like whatever i think for all three of these bottles. It was 200 and i have already gone through like three of these and like two, it gets um and i have stopped this pro clinics stuff. Just because i found the shampoo really drying and the conditioner you're supposed to massage it on your scalp, and then it just made my scalp so greasy, because i'm used to having um conditioner just kind of like from here down. Oh no. That reminds me of another thing: um at the very beginning of 2019. I filmed a video. I have all of this footage and i didn't release it to y'all, because oh no, it's, i filmed a video about me trying the autoimmune protocol diet, because one i didn't want my hair to keep falling out. Two was having a lot of really bad joint pain. Um, so i can try and put that video together now. Let me know if that's something you want to see. I just felt so embarrassed because i just failed at it. [ __ ] miserably like i did, do the afp diet for three or four months straight, and i think i did see some results. I don't know it was just so difficult and i never went anywhere because i could only eat super special foods and i didn't know how to do it like it's just. I should put that video together, even though it's like over a year old. At this point. It'S just a comedy of errors like me, just like crying in my kitchen like not knowing how to cook basic stuff, i even bought this really expensive cookbook, and it has these like artful photos of like it looks like just slop food of all of these things That i tried whether it's like no poo or whatever they all have subreddits on reddit and it's like they're, so helpful everybody's got really really great advice. People have really great testimonials on there. I struggle with thinking. Oh some random lady said that this worked for her. So therefore, it's science, like i struggle with that, like i like having opinions from doctors and science, but then i also get fed up not getting the results that i like i'm looking for, so i try and find testimonials of people that might be having a similar Issue to me, and then you get it's got to weigh it together. I just my rheumatologist said she doesn't really like aip, because sh she didn't really see any like very positive science behind it, and that could just be there's not enough studies and two. It just makes it seem like having an autoimmune disorder and having these symptoms is your fault? Oh, if only i had just eaten enough. Oh, i shouldn't have eaten that tomato or whatever, like it makes it your fault. It'S now. It'S my fault that i have my asthenia gravis and not just like my body is a dick whatever like it's like. Now it's instead of circumstance, it's like an issue that i could have fixed and she said she found um stress is very bad for your body and being under high stress with these like complicated diets is just as bad like. If i was a really good chef - and it was really easy for me - then maybe like more power to you, then you should do it, but i barely know how to cook we like i'm slowly learning. I kind of thank you pandemic for making me cook food because i'm so bad. I don't know what i'm doing so. What have i been doing to disguise my hair loss? Number one that i don't do it often but some of the times, because i really i'm trying to be so so so careful with my scalp um. If i'm going out and there's some sort of event, i'm gon na do some, i don't know i take. I have a little like eyebrow pencil, not pencil. It'S like one of those wandy mascara wands and i just like just kind of color stuff in make it look a bit a little bit darker, because i have some of my hairs coming back. But it's i don't know if it's gray or super blonde, but it's like almost translucent it's. You can barely see it even though there are some hairs there and it is growing back. It'S like a really light light, color and really really thin. So i'm just kind of like coloring those in with my eyebrow thingamajig. Oh, i also bought um just a batch of silk pillowcases. I'Ve tried to follow the curly girl method now, instead of no poo, because my hair's not curly. Look at this. This is me trying. So hard - and it's like oh - is that a bit of a wave whatever. I like the moisture that the the curly girl community brings in yeah about silk pillowcases, because the curly girl community said that it's good to have less pulling on your hair. Like the regular cotton pillowcases can be a little too harsh. I guess i also have one of those like little microfiber towels that i put my hair in now, like i no longer like scratch, my hair up with a normal cotton towel, because my god, you can't so i do they have all these there's all these words. There'S like plopping, where you just like plop your head on top of your or your hair on top of your head. There'S all these phrases. I don't know i'm still learning my god. Oh my god is snoring smokey yeah. Now the fun thing is. I uh my husband. His hair is twice as long as mine and then i'm going to shave my hair and i'm going to be like bald and he's going to have this like beautiful hair, it's kind of funny. I'Ve been teaching him to braid and stuff. It'S adorable so, while i'm sad that i can't really break it, i'm like teaching other people how to do it and i still get to braid his hair he'll be like going to work like you need a braid and he's like normally he's like. No, it's fine. I'M like okay, but sometimes he's like yeah sure and i'm like. Oh, i get all excited. I love braiding and i can't really do it anymore because it would just be like here's, my scalp um. What else do i have? Oh this boy right here? If i'm doing my shampoo, i just kind of like i do not rub it basically like i do like this, and i move the actual like device, i'm not doing scrapey scrape i'm doing just like moving this, because i want to get the blood flowing a little Bit but i don't want to be like pulling, i guess now, this one, i don't know if i'm going to put it in the video, because it's very embarrassing - and i don't know if it's doing anything same with all of these things - that my dermatologist told me To do is very like increases micro circulation and blah blah blah. Okay, i use my vibrator, i'm a woman. I have a vibrator, my god um, but one day i it was post-ivig. I had a horrible headache and it would not go away. It was a straight-up migraine because i blew a hole in my stomach from taking too much advil. I really like that's kind of like my last resort. I don't like to take advil um, so things i do is like i drink pickle juice or i drink like chicken stock to increase my electrolytes or i'll. Have a coffee or i will yeah drink lots of water like i try to do lots of things to make my headache go away and it's just getting worse and worse and worse, and it always does with my ivig. But this one was particularly bad and at one point it's just like: okay, [ __ ], this i'm taking some advil and i popped two pills. I was like laying in bed trying to wait for it to kick in it's the worst feeling when you're in really bad pain and you're, just like waiting for it to go away. It'S all you can think of, and my head felt so tight. So i'm just kind of panicking. I haven't had a panic attack in a while, but i was panicked, but i just like didn't know what to do, and i was just like this, so i what can i do to like loosen my head up and i'm like i've, seen people with those like, Like wands, you know what i'm saying doing the um release day muscles like maybe it will help so i just like took my vibrator out and i blend i just blasted my whole head and it worked almost too well, like my headache was gone and now i Do it all the time i probably several times a week, just sit there like laying in bed just like i just i made it up. I haven't even researched it. I don't know if that's a thing like use vibration on your head to help your hair grow. I don't know it just feels good for my head to like loosen up my headache. Will it help my hair grow back? I don't know. Is it weird? Yes, does my husband think i'm jerking off all day? Probably he does anyways. What else do i have on my list of things? This is the longest video i'm so sorry, this is what happens when you do like a a once a year. Video, that's a lot to catch up on. So the thing that i really struggled with deciding what i wanted to do was cost like. Do i get the laser cap and that's maybe not gon na work? Do i do hair transplants and it's gon na get worse um? Oh, i have a weird burp stuck in here, but one thing. The last thing that i haven't mentioned that i'm definitely going to do once the pandemic opens up is what's called scalp micropigmentation, it's basically the same as microblading your eyebrows, i think, but it lasts longer. I don't know i should be doing more googling, but there's a lady very close to me, um that doesn't so awesome, i'm gon na for sure get my head tattooed. I think it's probably gon na be about like two thousand dollars um, but but then it will be done. I won't have to worry like oh will it come back in or whatever like it's just going to look like. I have fake hair and then there we go problem solved like maybe in 10 years i'll have to come back and and do some touch-ups or whatever, but like there we go. There'S that i love it um and i started really googling um or looking up other badass [ __ ] with shaved heads and they're awesome, like i didn't even think. One of my best friends has is, has a shaved head and i don't think she looks weird. Like she looks boss, she looks so badass and when she shaved her head, i was like so proud of her so excited for her. She looks awesome and then do. I feel the same way about me like what why don't i just shake my head. Then, if it's gon na make me feel better and like i sometimes when i feel sad or depressed about myself or have really low self-confidence, i do i like the technique of like removing myself from the equation and pretend that me that i am like another person. So if i had like my best friend fanny was like oh i'm going to shave my head, i'm really [ __ ], sad about it me as like other fanny, would be like no man, you're gon na look awesome like the same way that i would treat My friends, i should treat myself so i didn't even think, like. I even have friends in real life that have shaped heads dope, and so i found some other people on instagram and just other people from just culture that i'm interested in there's like sinead, o'connor or, like i think, nina turner is a badass like there's. So many people there's this one lady. What is her name? She'S dutch? I think she has like actual alopecia and she just has like a bald straight up, shaved head and like it's so cool, she looks like a badass, so that's been nice to sort of follow. Other influencers and be like oh bald, is beautiful. What'S up, but then also i have what is today, who cares, but next week i'm getting a wig fitted. I can't believe it. I also have another wing right here. It'S like perfect. It'S like fits with. Okay. I don't know what anything about wigs, but i haven't like cut the lace: i've not whatever, but like it's like gingy. Her name is fleur. I can't speak french. Whatever her name is fleur fleur, i'm going to change it delicore, but it's like absurdly long. I tried putting it on and, like my neck, muscles are already so weak because of my myasthenia, and it's like this is so heavy. So if my go-to length tends to be like here, i'm going to get it cut. But i'm going to like a wig fitting and they're going to cut this one and cut a bunch of layers so that it's not as heavy they're going to cut the lace. Because i'm afraid to do that dope and then, if i'm going to like a fancy event or like a wedding or something fantastic, look at me, i got a wig. This one is synthetic. I think it was only like 70, which is pretty good, but human hair. Wigs are like so yeah back to the cost of things: i'm not gon na get like a hair transplant and then like. Oh, it got worse. That was a mistake. I just spent ten thousand dollars. I'D rather spend money on things that i can see like right now like getting a head tattoo or getting a wig or like getting cute hats. You know, like that's things that i can do right now and yeah. Wigs are probably like a human hair. Wig is going to be expensive, but that's fine last thing that i want to recommend hats so much hats when it was the winter i just wore toques all the time. Yes, i'm canadian. This is a toque um, they're fantastic. It was like a game changer to be like. Oh, i feel comfortable going outside. Is it weird that i wore a toot inside all the time i don't care? Did it get hot? It did. I also have this hat, which is my favorite. It has like my d stickers on it or whatever. It'S amazing just get hats. It turns out. I'M gon na buy a bunch more hats, but it's a pandemic now, so you can't go. I cannot wait to shave my head and then rock shaved look and then like i just i'm so excited number one. I get to get rid of all this trash and then maybe i'll come back, and maybe i can lean into like my maybe curly hair, a lot of the people or the women in my family do have curly hair. Maybe i have curly hair and i didn't even know it and it's just like ruined from being dyed all the time who knows thanks for coming to my chat, maybe i'll check in again sooner, maybe not. Maybe i should videotape myself shaving my head. I don't know. Oh, maybe i'll see you in a year, maybe not i don't know who knows

Janae: Hey! I respect you so much for making this video. Thank you for your experience and comical perspective on such a difficult subject. Just wanted to make sure: Have your doctors tested you for Hashimoto's thyroiditis? It's an autoimmune disease. It can cause fluctuating hypothyroidism, which could cause hair loss. Also, some doctors Don't let the more ignorant practitioners push you toward expensive, inappropriately prescribed treatments—25% of autoimmune patients go on to develop multiple autoimmune disorders, and that should always be considered when dealing with new/worsening symptoms.

Diana Gonzalez: Hi Phanie! I feel completely identified with you. I have had the exact same symptoms as you. I have had a thymectomy and right now I possibly have Lupus. How have you been? Love from Colombia

--: how are your symptoms after 3years from the surgery ? and have your medicine intake decrease ever since? I have Generalized MG I'm on Az ,Mest, Pred did some ivig too and doctor suggested surg. Got to say I'm crazy scared tho

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