I’m back to share my story after a break from long-form content. This video explains my personal healing journey over the past few years after contracting COVID in January 2024. I’m so grateful for your engagement and questions, as patient advocacy and healthcare education are so important to me. Your comments really help foster patient empowerment within our community.
Transcript
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So I disappeared
for a while from long form content.
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And I’m going to tell you why.
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I posted these videos several years ago
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outlining my struggle
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to get diagnosed
with ankylosing spondylitis happened twice,
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as well as my struggle
to get diagnosed with gastroparesis,
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and I have been seeing a lot of
the comments that all of you are posting.
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I really appreciate sharing information
with other patients
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and asking me questions
I’m happy to answer.
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And some of you have been reaching out
to me asking me for an update.
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The reason why I took such a long break
and kind of moved to short form
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content for a while,
was because it was a lot easier mentally
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for me to do very short videos
than for me to do long form videos.
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Long form videos are completely different
beast on their own.
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I did a lot of prep work for those videos
in order to get the story straight
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and make sure that I was giving you all
of the information in a interesting way.
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But the reason why I ended up
not being able to continue to do long
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form content over the long run
is because I got long Covid in January.
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End of January 2024,
I got a Covid infection.
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About a week in, I ended up in hospital
with a blood clot in my arm.
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It wasn’t serious
and I was struggling for the first year
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and a half having to deal with long Covid
and some of the side effects
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that come with it.
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It made my gastroparesis much worse.
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I lost a lot of weight because of long
Covid, which has been hard to have.
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All of my gastroparesis symptoms come back
and be just as horrible as they were
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the first I got chronic migraine with aura
and was suffering
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with just continuous perpetual migraine
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symptoms, was having disassociation.
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Alice in Wonderland syndrome,
which is where like my hands would start
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to look really small or my feet
would start to look really big to me.
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was having vertigo episodes
almost every single day,
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and then I started having
massive heart palpitations to the point
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where one day,
at the urging of several people
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I had spoken with that day,
I went to the E.R.
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and they just told me that it was a fast
heart rate, that nothing was going to
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kill me, but that maybe
I should follow up with a cardiologist.
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And it was a very difficult time
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immediately following my Covid infection.
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In the months
that followed that Covid infection, I
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Got incredibly depressed and
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it was really hard for me to focus on
some of the volunteer
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work as well as contractual work
that I was doing.
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I started to stay at home
more than I was before,
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even though I was at home
most of the time anyway, because I
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was still mostly a home due
to a primary immune
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deficiency, and Covid was still a thing
and everybody stopped masking.
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But I was home all the time.
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I didn’t even really go outside,
mostly in bed,
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mostly in dark environments, and
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it was really hard.
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And eventually, through the process,
I was able to see
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a physician along Covid clinic
who was able to walk me through it.
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That has been incredibly helpful,
but at the same time,
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there’s still really no treatments
for long Covid or any cure of any type.
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And so I was just left with a heightened
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sense of
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symptoms with no new treatments.
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A lot of the things
that I had been suffering with for years,
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like heart palpitations,
which for me is inappropriate sinus
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tachycardia, difficulty
being upright, sitting,
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standing, which ended up eventually
getting diagnosed as POTS.
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Difficulty with the gastroparesis.
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Obviously that got much worse.
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The chronic and perpetual migraine.
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I probably still have migraine
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symptoms maybe 29 days out of the month.
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Also being diagnosed with MCAS,
which is mast cell activation syndrome,
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which has actually
at least the diagnosis has made
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a lot of things in my past
make more sense.
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It’s just everything that I already had
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was completely heightened
and taken to the max.
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And throughout the past
couple of years, it’s
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been really difficult
to get back to my baseline.
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I’m constantly struggling with this one
lymph node that keeps swelling
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and causing me problems whenever
I get sick or have an allergy or anything.
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That’s been incredibly painful.
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Having to deal with the pain of migraine,
that’s been horrible.
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And so I just I took a break because
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and I’ve seen people ask me, well, like,
how is your gastroparesis?
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You know, what is happening now?
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Truly, my gastroparesis is it’s
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slightly different than it was,
but it’s not better.
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Gastroparesis, especially idiopathic
gastroparesis, are still not 100% sure
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why it happens that they’re
the scientists are studying
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and they’re really trying to figure out
what the root cause is.
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But all of the gastroparesis medications
that have been offered to me,
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I either was not a candidate at the time
or they didn’t work for me.
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So personally, in order for me
to deal with my gastroparesis
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symptoms, I’m just left
having to take an anti-nausea medication.
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But and I know if you’re a patient
that also has long Covid
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and that maybe had a ton of very,
very small things
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like all of a sudden blow up
and become really big, I can understand
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how difficult that is,
but I feel some hope
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that maybe because of everybody
that’s getting long Covid,
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maybe in some of these conditions
that wouldn’t have really gotten
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any sort of research
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are now starting to get people
interested in them,
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and they’re starting
to have more research done.
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So I think that’s kind
of the only benefit to it.
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But that’s why I haven’t really sat down
and recorded a long form video.
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Having long Covid has been really hard,
having to pace myself
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in ways that I didn’t have to before
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has been really hard.
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having to talk to
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people on the internet
who don’t know me about all this stuff
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can also be really difficult,
because I want to be able to offer
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you beacons of hope within this,
because within the chronic illness
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community, I know that you know,
you read some of your peers
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talking about all of the horrible
different things on Reddit and Facebook
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and that sort of stuff,
and you just kind of hear
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about the terribleness
that happens with all of these conditions.
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And I don’t necessarily want to
come on here and tell you.
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Hey, this is going to be terrible.
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And it’s not getting better
because the reality is it is terrible.
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It’s not getting better.
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But I still want to have hope
that things will change.
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It’s been hard for me
to make long form content,
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because I have to sit here with you
and have a discussion about things
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that I really want to prep for, and
I haven’t really been able to do that.
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I have so many video ideas.
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I want to share information
with you on different things.
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I want to share some of the weird
diagnoses that I’ve had over the years.
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I want to share stories.
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I want to help you
to advocate for yourself,
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and I just have not been able to do that.
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of the other things that happened,
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because you may have seen a video
that I did
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release when I opened up my business
chronically advocating is
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I have been doing one on one advocacy
with patients, in addition to me
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continuing to work on me to make myself
better and help my different conditions.
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And so that has also been a pull
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that has kind of drawn
me away from long form content.
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I really do want to commit to giving
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you more information
about anything and everything.
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I know a lot about the medical system.
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I know a lot about health care.
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I’m totally down for deep dives on weird
medical subjects as just a layperson.
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So if you have any questions
about anything gastroparesis,
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long Covid POTS dysautonomia
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ankylosing spondylitis.
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I also have narcolepsy,
which has also been really hard.
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Chronic migraine with aura anything.
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Drop the comments below and I
will be in the comments answering them.
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And if you have ideas for things
that you want to see, let me know.
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I know the next video that I want to work
on is actually to show you
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how to eat with gastroparesis,
especially if you’re newly diagnosed or
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even if you have any type
of like stomach issues,
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kind of the different equipment that
you can use to kind of help you with that,
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how to adapt recipes
and just kind of show you,
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give you a little understanding
about the eating portion,
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because I know that that was one thing
that I had a lot of people
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reach out to me asking me, well,
how do you eat for gastroparesis?
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I want to give you the basics,
and then maybe
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we can throughout the years,
we can build upon that.
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So thank you so much for watching.
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If you’ve made it this far,
YouTube thinks
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that you are going to like this video
if you want to watch that next.
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See you next time.