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Migraine + Chronic Illness Update | 2019 | Kendra Winchester


All right, hello! We are here with really
bad lighting, and we have Dylan down in the corner. He’s down there eating an
apple. Don’t worry. He doesn’t eat the core of the Apple. We have like random
cores of apples sometimes like in his, well . . . he’s on a towel so he doesn’t like
get stuff all over the floor. But anyway, he’s fine. I promise. I promise he’s fine.
He just loves apples. All right, so today I’m just gonna give you a little life
update and talk to you about my migraines and different things and also
some things I would like to cover on my channel. But I feel like I should talk to
you about a few things before we go and look at those things. So that is what I’m
going to cover in this video. So just grab a cup of tea, and let’s just sit
down and chat. I have a general idea where this video is going. Hopefully, we
don’t get sidetracked by rants, cause, that happens. All right, so first up: chronic
daily headaches and migraines. So as you know I have chronic daily headaches and
migraines, which is basically for me it means I have a headache every day, and I
typically have a migraine most days. But I have different kinds of migraines, and
so sometimes I’ll get really bad ones for about 3 or 4 months of time. That’s
actually pretty common, but recently I got . . . well, not recently. That’s kind of the
problem. So I last April almost a year ago I got
this migraine while I was on vacation, and I ended up like throwing up for like
three weeks, went to the doctor was like, “Hey, this is bad. what can we do about it?”
And I started preventative medication. She gave me some stuff currently, but with
migraines, it’s very difficult to stop them once they start. Most of the
treatment that I personally have received has been preventative because
it’s very difficult because there are lots of different types of migraines. And
I actually have at least three different kinds of my migraines going on. And they
run in my family as well.Oh, yeah. Yeah, I hit the jackpot, didn’t I?
So February, yes. So in February I was able to read a book from cover to cover:
LONG LIVE THE TRIBE OF FATHERLESS GIRLS by tT Kira Madden. Great book. And since
then I’ve been able to read essays, and I try to be very careful because I know I
could easily trigger it again. So I only read 30 to 50 pages at a time, and I’m
working on an essay collection that is not available in the audio. So that’s
where I’m at right now, and overall I’m very happy with the way
that my migraines have improved. All right, so anyway, so that’s a headache migraine
situation. So I also wanted to talk to you about some things I’ve already
talked about over on Instagram. You might have seen this post over on Instagram
last summer, and it was really one of the first times I had opened up a little bit
more about my chronic disease because I have a bunch of different things that
together create something whole and new. It’s like, you know, I don’t even know
what analogy to use, but that is what happens. So I also have Polycystic
Ovarian Syndrome and Endometriosis. That’s also kind of a sideshow. My
migraines aren’t really the big, you know, focus of a lot of my problems. They’re
just kind of extra, and so is these other issues. And in the United States I don’t
know other countries. I’m just gonna speak to my own country; there is really
a struggle to be able to treat this there is no cure really,
except kind of removing the endometriosis, which is where the lining
of your uterus grows on things that shouldn’t and then pain happens. And you
know, I’m not gonna sugarcoat it. This is extremely painful, and the fact that
women are just being thrown like birth control as like this panacea of all
women’s problems. It’s a huge problem. I’m not gonna rant about that today. We’re
gonna talk about that a little bit more when I finally read Abby Norman’s book
ASK ME ABOUT MY UTERUS, but if you would like to know more about that, I would
highly recommend that book. I’ve not read it but Jaclyn has, and she said it
was very informative. So Thank You, Jaclyn. All right, so the main act of
the circus of my body . . . that’s either really questionable or a great memoir
title. Anyway, the main act of the show that is Kendra is my digestive system. So
I’ve had problems with that since I was basically born, but I started seeing a
gastroenterologist more seriously rather than just a GP when I was 9. So when I
became an adult I struggled to find a gastroenterologist that worked for me,
and they all said that I was crazy and tried to diagnose me with hysteria
and/or anxiety and/or depression, which that’s not . . . no. Eventually I did have an
emergency situation where I had a twisted bowel and they had to
remove the obstruction. It kind of revealed that there was a lot of other stuff
going on, and so since the combination of things. I’m not going to go into details
of diagnosis and treatment because that would take like 20 minutes to explain
and that’s just it’s just too complicated. So today I’m just gonna talk
about what that looks like as a combination of things since I can’t
just send you to WebMD or something. So basically what it they discovered is
that a year after my surgery I started throwing up a lot, like every day. And it
was a problem, obviously, and I didn’t know what was wrong and so eventually we
figured out that my stomach would not send the food on its way and so things
would get a little backed up in the you know the top of my digestive system.
My body would just hit the reject button, and I would throw up. And that’s bad. So
now I take enzymes help process that, but I also have a very damaged intestinal
tract, which means that I also have more migraines from that, which is why I’m
gonna very restricted diet and for that sense. All of these things I have to
think about, and it can be very dangerous when I’m trying new food because it can
cause problems. So whenever I travel, I’m always like drinking juice. I remember we
had a booktube meet up at the Decatur book festival last year, and I’m just
like we went out for dinner. And I’m just like drinking juice, and there you have
like all these great like salads, and I’m just like juice. Thank you, this is great.
But also that does mean, because I had the bowel obstruction that I am also
prone to have more of them. And in fact a few years after my surgery, I started
having more of them now. Lots of little kids get them, and then they just, you
know, they do a colon resection, which is where they cut out a section of the
colon then they like smush them together. [laughs at self] Very scientific! And you know, it’s sort
of common, not really, but like you know, if you’re gonna have that surgery,
typically you have it because you’re elderly person and you have colon cancer or
you’re a child and you colon resection or you have inflammatory bowel
disease. Anyway, so I realized that this was going to be a repeat occurrence, and
now it’s about at three months. Every three months, I have one of these things
and the doctors, like, gave me this check sheet. Like, “do you
need to go to the emergency room? check off these things!” So typically they work
them out themselves, and so far has been the case. Sometimes it is scarier than
other times, and sometimes I’m like how am I gonna get to the emergency room? I
have never been in so much pain in my life. Like, what on earth? And you can’t
even like uncurl your body to move to a car, so what’s that going to look like?
Since these things only happen every three months, I don’t really like worry
about it, but this past February around the time I read the book cover-to-cover,
I started a new medication for nausea and vomiting, because you might have
gathered, that’s a big part of being Kendra. And so I tried a new medication,
and it was very bad. You know, they slow down your digestive system anyway,
and when you already have like one that’s . . . I feel like this creaky, like, I
keep thinking of the Weasleys house, and how it’s only held up by magic. And
sometimes I feel like my digestive system is the Weasley’s house.
It is only held together by magic. So I was having a bowel blockage, like, every
three days, and you know, we’re talking about your colon. This is like disgusting,
right? So I don’t apologize. This is just part of being Kendra, and part of
having these types of diseases, but it is kind of gross. I can’t tell a lie. Ad so
this isn’t just constipation. This is like an actual blockage where your colon
cannot move things, and then when it actually, eventually does, you
know, work itself out, that just means you feel everything moved through your colon.
Now most people’s colon looks like this. My colon looks like this because there’s
not as much, and they had to cover ground. And I only know it looks that way
because that’s what I feel moving across my abdomen, and it’s just really painful.
And I’m a very positive person, kind of, not really upbeat person, but positive
happy soul. But I’m gonna say like, it is the worst pain, and a lot of people who
have had children equated it to childbirth. I have had an epidural,
so like when everyone’s telling their birth war stories, I’m like, “Well, let me
tell you that one time I’d have an epidural.” So war stories.
And I have so many. You pretty much put a bunch of chronically ill people
who often like have surgeries like every other year or whatever, and they’re all
like well this one time I told someone when I was on drugs. And it’s great. It’s
like the greatest pastime. Anyway, I will spare you. I did want to talk to you all
about this, because it does mean that I basically spent February in bed. And I
was in a lot of pain, because when you have a severe problem with your colon,
like that every few days, 1) it’s exhausting cause you’re up all night
continuously but also 2) you don’t know why it’s doing this. And when you
have an incurable disease that deteriorates over time,
you’re like, “Am I gonna be able to recover from this? Am I just gonna take
another step down with my health? What’s going on?” And there are some
serious long-term concerns. Thankfully, we figured out it was the medication, and I
stopped taking the medication. And we switched to something else that is fine.
It’s probably wouldn’t have worked as great as the other one, but at least I
can take it without dying. That would be great. Anyway, so when you have something
like that, you mentally have to process it continuously. And so you know it took
all of March for me physically to recover a bit more from it. I’m still not
fully recovered. It will probably take me at least a year to regain the ground
that I lost within that single month of horror of all the stuff happening. And
when you have multiple different things going on with your body, one small thing
can send the whole thing teetering off, and it will take you a long time to
recover. And you know, having a disabling chronic disease, I’m not able to work a
normal 9 to 5 job. I haven’t been able to do that since I was like 24, so it’s like
been a long time. And I have to work for myself, and when you are self-employed
and you can’t work, then you don’t support yourself. There’s no sick leave.
There is no, like you know, sick days that where you’re still getting paid even
though you’re sick. There’s none of that. You have to . . . there’s some very real life
concerns when that happens. So I wanted to share a little bit of this with you
all because I’ve seen a lot of different things on the
recently they have really been troubling. Someone was diagnosed the chronic
disease and someone said “Oh, it’s a shame that person was diagnosed with that or
has that thing. They HAD such great potential.” HAD?! Sick people in literature
are often portrayed as like leeches on society. What is the point of their
existence? You think of Darcy’s cousin you know who has been sick but engaged
to Darcy since her infancy. You know there’s just a lot of problematic
representation of sick people. Also you know because of this able of society
that we live in, some have internalized ableism. You have a lot of people who
believe their life is over because they can’t do anything that they had
planned to do. And they have to switch like not just what they do, but also how
they see themselves. And there’s just a lot of problems with that. So I want to
talk about this a little more in the future, maybe feature chronically ill
authors. Sne of the reasons that Flannery O’Connor and Virginia Woolf are on our
logo for Reading Women is because Flannery O’Connor was very sick, and she
died in her 40s, fairly early in her life. And it was because she had lupus, which
is sort of related to stuff I have, and they have a lot of similar problems that
she has. And you know, I just had this really horrible February where I was
just it was just awful, and so then all these people were talking about Flannery
O’Connor’s birthday and “such a shame she died so young.” I’m like, “Guys, too soon!” Why
can’t the universe read my mind. Can we just not talk about that like this once
on her birthday? Can we just not mention that she died early? Could we
just talk about her work and how awesome she is period? Why do we always have
to add, “Shame she died so soon,” and with Virginia Woolf, it’s always “Shame that
she committed suicide.” And I’m like, I feel like we need to redirect our focus
on some of these authors with chronic conditions. And yes acknowledge that and
and see that representation and value it. At the same time just appreciate the
authors for who they are and different things. So these are lots of thoughts
that go through my head, and I want to share them with you all. And I think
there’s a lot of great options, so if you know authors with chronic conditions—
whether that be mental health conditions or chronically ill conditions, which I
will say I would I find fewer chronically ill conditions now—but if
you know of any of those, definitely put them down in the comments or send me a
message. But yes this is where I’m at now. If you would like to know more a little
bit I guess maybe about my medical history, I will link that Instagram post
down in the description box so you can go see some of that. It was definitely a
more serious telling of this story. Dylan is in the
background. I don’t even know what he’s chewing. [to Dylan] Are you supposed to have that?
What are you eating? Well, I should probably go check on that. So
anyway, thank you, so much for watching. And I will return [to Dylan] oh, the doughnut. I will
return with your regularly scheduled bookish videos, and I will see the next
one. Bye, guys!

34 thoughts on “Migraine + Chronic Illness Update | 2019 | Kendra Winchester

  1. Kendra – wow what an honest and very powerful video. Rather than writing my thoughts here I will email. Thank you for being you 📚💜😊

  2. This is so important to talk about! I have PCOS, and doctors look at me like they have real important issues to treat 🤷‍♀️ the lack of answers made me feel really depressed

  3. Thank you so much for starting this conversation, Kendra. I have a type of muscular dystrophy that causes progressive muscle impairment and mobility issues, and frankly more difficult than that is the fatigue and frequent brain fog. I'm also self-employed and a writer. Your comments about redirecting the usual comment about someone like O'Connor are so spot-on. What she accomplished was incredible work that she wrote out of her experience, not "despite" it. I'm always interested in being aware of more writers with disability and chronic disease, so I hope if you gather a list you'll keep us posted about where to access it. I'm sure you know of Esme Weijun Wang. Nicola Griffith is a kick-ass novelist who has MS. Keah Brown has an essay collection coming out soon; she has cerebral palsy. Sonya Huber is a great nonfiction author of essay and memoir. I'm sure I'll think of more. I have a fledgling Booktube channel where I hope to bring in some of these conversations. Thanks again!!!

  4. I'm in bed watching this .Ive had my 4th migraine this week. My meds haven't worked. I feel miserable 🤢I like you rely heavily on audio. Annoying that many Books have no audio option.
    Endometriosis also runs in my family. I've been through menopause so it's not so much of a problem. For my three younger sisters and 4 nieces it is.
    If you can trace your ancestors back to Donegal you're at higher risk of celiac . Our family ( on both sides) are from Donegal. My sister Deirdre has celiac but the rest of us seem to have an intolerance.

  5. Thank you for taking the time to share this. I too struggle with several chronic conditions and would love to see more representation in books.

  6. This is such an important topic, thank you for sharing your experience. I think that if women have a chronic illness they are all too often considered as being 'defined' by it. I mean, hardly anybody talks about the fact that Jonathan Swift had Meniere's, or that Nathanial Hawthorne suffered from severe social anxiety disorder… And as forother authors with a chronic illness: Amy Tan and Alice Walker (both have chronic Lyme), Hilary Mantel, of course, and Joan Didion (MS).

  7. Gosh you are a warrior. I'm so sorry you go through this, Kendra. The conversation around women's health issues needs more attention. For too long we've allowed doctors to tell us we were hysterical or that we were imagining it. I admire the hell out of your work on Reading Women & videos. & now I admire you for coming forward to speak about this as well!

  8. Thank you so much for making this video and other videos like it. I've always been sick, but it hasn't been until this year both listening to the Reading Women podcast and watching your videos that it finally clicked for me that I have multiple chronic illnesses. Being sick has always been my baseline so I've never thought about it in any context other than "oh Keeley doesn't feel good again, big deal". So it's been an interesting few months to really wrap my head around the fact that I do have chronic illness. That it's not okay that the things I've been loosely diagnosed with haven't helped me in any way.

    I've had headaches and migraines as well as severe stomach issues since I was seven. I'm finally seeing a gastro again for the first time in over 14 years to figure out what is really going on after being told "well we can't find anything so you have IBS due to emotional issues" when I was a teenager. Thankfully my new gastro has already done blood tests and found things my old doctor never did. But this process has been invasive, humiliating and just shitty (no pun intended, har har). I know I need to find a new neurologist but I'm also hesitant to because of how useless that process was when I went as a kid.

    Ugh. End of my rant. I guess what I'm trying to say is thank you. It's because of your willingness to be so open with what you're experiencing that I feel more comfortable not only thinking about it, but talking about it, writing about it, and doing more to find answers for myself.

  9. This is such an important topic, thank you so much for sharing. I would love to see a video about authors with chronic illness and about good representation of disability and chronic illness in literature.

  10. Ahhhh thank you so much for this. ♡ I feel so scared every time my health takes a dip. Scared that I'm slipping backwards or that this time it won't get better. I'm having to learn to live with not knowing when I will have to stop and take care of myself for awhile and still know that I am contributing and worthwhile. I've only been dealing with my health issues over the past few years so I am creating a new normal. It is so nice to see such a lovely, bright, intelligent woman who just so happens to deal with health issues too. I feel like most of the time when we talk about illness it's almost a competition instead of this is just a part of my life. I would like to read literature where illnesses do not define characters. I didn't even think about the lack of visiblity in literature…

  11. This is not disgusting at all. I have Crohn’s, which is IBD, and have had 2 obstructions and respects. I also have Lupus, with the extra bonus of migraines. I feel your pain. Take care.

  12. Yes, as you said, you’re positive! Gosh, I’m sorry you have these issues! We all have “things,” mental and physical; however, it’s seems overly unfair to you.

  13. Thank you so much for sharing this. It's so incredibly important that people understand what it's really like to live with a chronic illness. I've been on the receiving end of so much absurdity and garbage, especially because my illness carries a lot of stigma. I'm very open like you've been here, because if I can get even a few people to have a better understanding a little more empathy and a little less busybody-ness, then it's worth it to me. Sending lots of support your way <3

  14. The fact that your illness doesn’t show on the outside must make it even harder for others to take your pain seriously. Your strength is incredible.

  15. Thank you for having the courage to be so open about your physical battles. What a great video! I would love to access that list of books by authors of chronic illness or about chronic illness when you finish compiling it. As a past caregiver, I would have found them helpful years ago. You do a great job with your channel- thanks for sharing your knowledge and love of books.

  16. Thankyou Kendra for sharing your life’s ups and downs! You have such beautiful eyes and it’s a pleasure to listen to your reviews.

  17. I recently stumbled on "Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine" by Michele Lent Hirsch through booktube. Such a relatable read for a chronically ill person. The author speaks both of her own experiences, but also interviews many other young women in all sorts of situations.

  18. I feel so bad for you. Have you seen the Instagram feed of Mab Graves? She's an artist who has also struggled (and still struggles) with endometriosis issues. I encourage you to check out her feed because I think it will be a great empathy source for you. And you might love her art work, too. She's an amazing illustrator.

  19. Thank you, Kendra. I've suffered from chronic migraines and vertigo and nausea for years plus anxiety. It's difficult when I "look fine" for others to understand the daily struggle. Almost 2 weeks ago now, I was diagnosed with Bell's palsy and that has opened up a whole new world of disability for me. It has been humbling, I'm out of work right now (going back next week), and hoping for recovery soon! I always appreciate your candidness and sharing your personal struggles. Love to you!! ❤️

  20. It's great that despite having to deal with so much you are so positive! I was wondering whether you have read Giving up the Ghost by Hilary Mantel, who has severe endometriosis too. I loved the book.

  21. Thank you so much for sharing your story, Kendra, and I send all kinds of love your way!

    And I have some titles for you 🙂 I'm a medical interpreter so I gravitate towards own voices memoirs so I can better understand my patients. Some I've read:

    Invisible: How Young Women with Serious Health Issues Navigate Work, Relationships, and the Pressure to Seem Just Fine by Michele Lent Hirsch (own voices for chronic health issues of many sorts and she's also lgbtqia+)
    Pain Woman Takes Your Keys and Other Essays from a Nervous System by Sonya Huber (own voices for chronic pain)
    Seeing Red by Lina Meruane, translated by Megan McDowell (semi-autobiographical fiction, own voices for diabetes)
    Duke by Default by Alyssa Cole (own voices ADHD – she was diagnosed shortly after writing the book and pulled largely from her own experiences. AoC, contemporary romance)

    And on my TBR:

    Somebody I Used to Know by Wendy Mitchell (own voices early-onset Alzheimer's)

  22. Thank you for sharing. So sorry to hear about your suffering. I have suffered through migraines for most of my life, different types (scintillating Scotoma is one type) and I’m lucky that they have gotten better with age. Just in time for peri-menopause :/. Now my daughter has been vomiting regularly (once or twice a month) and her father just passed about a month ago. The last time she vomited there was blood in her bile. We had to go to the emergency room on the day I had to return to work and work actually gave me shit about it. So I can relate to many of the issues you have spoken to here. I tell you all this to let you know you’re not alone. And you’re right about how the sick seem to be this burden on American society. I felt like my job was telling me, “your daughter’s illness is your problem”. It really shook me. All of it it’s frightening as hell. I hope you feel that you have a good support system. That helps. I don’t really have family so I am grateful to many friends that have stepped up. You’re lucky to have that if you do. This video is wonderful in its vulnerability and courage. Take good care of yourself. Reach out if you need to.

  23. Thanks for sharing. My migraines come in clusters and can be so debilitating. I feel like I’m taking preventers and relievers constantly. Hope you get some respite.

  24. I knew you had horrible migraines, but I had absolutely no idea about the Endo, PCOS and IBD. You are such an inspiration, Kendra~ You are a hero to me and I wish I could hug you. I didn't know if I should even leave a comment because what I feel in my heart will not come out in words very well, and I wonder if this stuff is best left unsaid. But, here I go anyway: I have been dealing with Endo and bowel distress(they go hand in hand) for so many years. I have had multiple surgeries with my final one a year ago where they took the remaining reproductive organs and I went into menopause(the pain remains, although it is better). I have also been on strong pain medications for 5 years. The stuff I was put on was Dilaudid which is a derivative of morphine, but much much much stronger. Without the meds, I couldn't even function. I could barely get out of bed most days, so thankfully the medication gave me some quality of life. But the pain was just so bad that I could have taken triple what I was prescribed. That is how awful the pain was. Two years ago, I shut down my business. I, too, worked from home and I loved my job so much and I went kicking and screaming as I walked away from it. I held on until I couldn't hold on any longer. Once the disease/pain affected my work significantly, I knew I had to walk away. I then fell into a deep depression and I really didn't know if I even wanted to live any longer. I am doing better these days, but boy oh boy, it's been a nightmare. I cannot imagine having all the other significant challenges that you have ON TOP of the Endo. I just had the IBD/IBS and Endo and it was devastating. I think you are one of the strongest people I know. And, yet, you still have a smile on your face! Unbelievable!

  25. Thank you so much for sharing your story and struggles.
    Also can i just nod to your story part about what kind of war stories chronically ill people can share if you put a few of them together? Just the horror stories alone from doctors that don't take you series if you "only have headaches or migraines" all the time and nothing clearly visible (one of my absolute favourite thing to hear from professionals. Because clearly if you are chronically ill you love spending time at doctor offices without reasons while feeling as if you are dying on the chair in the waiting room only to hear that you should just suck it up because clearly its not that bad! Or my personal favourite, it can't be a migräne if i am able to sit there.)

    Also thank you for saying how society, people and books are seeing chronically ill and how they are wrongly portrayed in lots of ways and how horrible it is to see, read or hear chronic illness and sufferers are portrayed.

    So again, thanks for sharing your story and being so open and honest and real about it all! 🙂

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