Watch this if You Need More Help from Doctors for your Chronic Illness or Rare Disease | Ep.218

By Adem Lewis / in , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , /

Hey guys what’s up, it’s Jeffrey Lin.. Welcome back to my channel today I want to talk about working with doctors and how to do
that effectively because especially when you have chronic illnesses or even just
a difficult out of the norm disease doctors can be really frustrating and
especially when you’re not feeling well and you just want to get better you’re
even that more impatient to put up with all the testing or even the doctors egos
I was born with three chronic illnesses maybe you can classify them as more
they’re basically immune related extreme eczema from head to toe and I’ve had
both the dry cracking thick scaly kind of skin and also the wet leaky looking
like a burn victim kind of a skin where all your clothes and everything just
sticks on your body you’re like constantly ripping off your skin
whenever you move and I also have extreme allergies to literally
everything I couldn’t even touch water for ten years I’m allergic to all foods
but those things never really got close to killing me because my asthma was so
severe that you know I can smell things from miles away with Windows clothes and
have a full-on asthma attack and that will kill me first so by the age of four
I’ve seen all kinds of doctors east and west and they have all failed and
actually made my condition worse everything they tried made things worse
so by the age of four I had given up on all doctors and I had decided that I was
going to cure myself because it was apparent to me that nobody knew what was
going on like the best experts in every department and I live in LA so they’re
really great doctors and research hospitals and colleges here and everyone
failed and everyone messed up miserably and these are the smartest people in the
world that work on celebrities and things like that so I worked really hard
in school especially because I’m sick so I didn’t get a go school odd and I was
wheezing and peeling and itching in bed and inflammations everywhere but
studying kind of kept my mind off of it the first thing I want you guys to do if
you’re not a medical expert is you have to develop your bio sciences and just
science and math skills in general because you have to take charge of your
condition in your disease and you have to be the lead doctor you have to
present be like dr. house in the show house even if you find a great doctor
they won’t know everything that you’re going through at every single moment
and unless you’re constantly in the ICU and having doctors around you 24/7 which
is not fun you’re the only one that’s gonna be around you all the time your
doctor your specialist whoever they’re not gonna see everything that happens to
you they’re not gonna know of every little
symptom and even if they’re there with you if you don’t say anything or if you
don’t know that certain conditions or certain things are symptoms then maybe
you won’t tell them and they’ll miss something so you really have to develop
your biological science skills your chemistry skills and just general
scientific method of testing and evaluating and data taking so you can
keep track of all of your conditions and how medications affect you and how
environmental conditions affect you and all these things and you can do this in
an unbiased manner and the key about the scientific method is that you want to be
embarrassed because especially when we’re sick our emotions get in the way
you know we’re not feeling well we’re a jeté tit we’re
impatient it’s a natural response as a survival response but it’s not the best
way to observe your condition objectively and make good decisions and
decide on treatment plans based on that I have part of a plan what percentage of
a plan do you have what percentage I don’t know
12% 12% it’s real totally fake that is the most real authentic hysterical laugh
of my entire life because that is not a plan
barely a concept when you have emotions clouding your judgment or you just want
to jump on the next medication or you take too much medication because you’re
just suffering a lot that is not good that’s gonna mess things up a lot more
than you know not having the right treatment so that’s basically what I did
growing up was study study study basically because I react to everything
so I can go out I couldn’t even be under the Sun it’s gonna burn my skin so I
developed a good scientific foundation and I went to the best engineering
college and I wanted to go there for biomedical engineering again to work on
carrying my own condition but there are things I won’t get into that didn’t make
that the best fit so I focus on aerospace engineering and also got a
economics degree but I did do several biomedical engineering projects and just
back there it’s one of my biomedical patents that’s used for esophageal
surgery that we developed a new attachment to endoscopes and the surgery
method to do that so you can get your stomach surgery in a day and go home
that night so all that built a foundation for when I go to talk to my
doctors I’m talking to them on the same level as a scientist as a
researcher instead of a patient just wanting their doctor to miracle II cure
them because doctors are not miracle workers as much as we want them to be
they are a human and again they don’t know everything and even if they’re the
best doctors if you don’t tell them the important data they’re important
observations they’re not gonna be able to make as good as the judgment as say
when I go see the same doctor and I’m telling them all just only the relevant
information scientific information based on all my research and things like that
you just have to constantly do research on your own condition as well and not
just the symptoms that you have but kind of the foundation biological sciences
behind that so for example if I have allergies I don’t want to just research
about hives and being itchy yeah you want to look into the whole allergic
reaction chain starting from you know the white blood cells and the T cells
and then you go down to the Ige’s senses when allergens are in your body and you
go down to the mast cells which produce the histamines and others other
cytokines that you know trigger the full-on
allergic reactions so you got to study the whole foundation behind your
condition and you want to branch off and look to all of the things that are
related to your condition and the scientific reasons behind that and read
all the research papers and what we have now that I didn’t have growing up is the
Internet the Internet allows you to have all the world’s knowledge in your hand
even if you’re sick you can type it up on your iPad and you can do endless
amounts of research and now you can even go into forums and ask people who are
knowledgeable about this some of them are doctors or some of her just like me
who have suffered certain condition for a long time and they have a lot more
experience than you so you got to take the lead on trying to solve your
condition and just like in the show house a lot of times there is no correct
answer or obvious answer because you do have a rare disease or you do have a
chronic illness and you and your doctors are along this journey of figuring out
this mystery and you have to take the lead in that and kind of push things
forward as a team leader but also be knowledgeable enough about each of these
areas so that you manage your basically managing your doctors and maybe you
don’t know everything they do but you know enough to communicate what you’re
observing and when something they say doesn’t really make sense or you when
something when doctors saying doesn’t match up with some of the research you
read or what another doctor saying gentlemen what uh what seems to be the
problem bicycle accident action tibia about five
inches patella dr. Harris yes do you concur concur
what sir with what dr. Ashland just said do you you concur oh well there’s a
bicycle accident um the boy told us so you can curve okay I think we should
take an x-ray then stick him out and put him in a walking cast very good dr.
Ashland very good well you don’t seem to have much night for me carry on didn’t know why I’m not concur I’m sorry
that’s a big task to take on but it’s your body it’s your life and
you’re the person responsible for it and nobody’s gonna care more about your body
than you yeah a good doctor and a good nurse it’s compassionate and cares but
they have their own body to deal with they have their own family members to
deal with and at the end of the day you know everybody has their own
responsibilities and their own problems to deal with so you have to take the
lead it is up to you so by educating yourself as if you were trying to go to
med school then when you go in and talk to your doctor about various treatments
that you might want to try or to asking questions about whatever treatments
they’re suggesting for you you can ask more intelligent questions and when they
see that they’ll be less likely to dismiss you the problem is most people
go in expecting the doctors to do everything and they just ask mundane
questions or questions that are totally irrelevant and doctors are human and you
can’t blame them for getting a little bit annoyed or impatient or they just
switch to a sense you don’t know anything and I don’t have time to teach
you everything I’m just gonna tell you this is how it’s gonna be so a lot of
times it seems like doctors are talking down to you but it’s just that they have
so many patients deal with and if it’s obvious that you don’t know what you’re
talking about and a lot of times the patients don’t
want to understand what’s going on they just want their doctors to fix them so
when doctors sense that they’ll they’ll just you know take the basically taking
the lead instead of letting you take the lead the doctors take a lead and just be
like this is how it’s gonna be blah blah blah and then they send you on your way
but no good comes from that when you have a chronic illness because again
it’s theirs if you don’t have a set answer you need to communicate with your
doctor more and you got telling you’re missing this piece of evidence
you’re missing that piece of evidence but again you don’t want to tell them
things they’re irrelevant because they’re just gonna feel like it’s a
waste of time and they have other patients to take care of you’re not the
only patient that is suffering and so they have that responsibility too but if
you’re speaking to them as if you were a medical professional and it’s obvious
that you know what you’re talking about but they still dismiss you then it’s
probably because a lot of them do you have egos or a lot of them just
inpatient or a lot of them feel challenged because you know more than
they do and that just means they’re not the doctor that’s going to help you
because if you know more than your doctor they’re not gonna be able to help
you fix a chronic illness or figure out the solution then you got to move on and
contact other doctors and figure out a way to find someone else or if they’re
if your doctor is nicer and you know and they’re willing to admit that it’s kind
of reaching their limit they could be an ally and help you
connect to a professional or a big Research Hospital like the Mayo Clinic
but if they’re just dismissive and just think they can fix all your problems
then you just need to walk out there and I’ve done that my share of times and a
few times I didn’t I really regretted it because you know I was impatient I just
wanted the result I just wanted a doctors to fix me instead of again like
I said thinking through it objectively and stepping back
it was after college I just graduated and all my friends were on to new jobs
in grad school and things like that and I was feeling like I was falling behind
so I worked with a celebrity doctor that’s also teaching at a major school
here in LA it works with a lot of important people
and took a lot of networking and convincing to you get in to see him and
it the treatment gaming just completely blew up I got into the worst condition I
was ever in and I started out in a very very bad position but what he gave me
basically complete disintegrated my skin and turned my dry cracky eczema into the
leaky I look like a burn victim and infections everywhere my joints popped
and then inflammations happened in my nervous system and I kind
of forgot who I was I forgot how to talk so I had to relearn how to talk and
that’s taken many years so being impatient and rushing and just blindly
trusting doctors have horrible consequences and you have to be
responsible for yourself so that’s my message that’s my rant if that was
helpful or if you guys have any other questions or experiences of working with
doctors that work for you leave a comment below if you haven’t remember to
subscribe it will help my channel a lot and my goal is to grow my channel so
that I can reach more people who have chronic illnesses especially those
suffering from asthma eczema and allergies so hit that subscribe button
and I’ll see you guys soon

7 thoughts on “Watch this if You Need More Help from Doctors for your Chronic Illness or Rare Disease | Ep.218

  1. I have Psoriasis and I'm covered from head to toe, My scales are so dry, but man I feel you man have you ever tried an alternative or tried changing diet?

  2. LOVE you more Jeffrey. My daughter used Dupixent injections for almost a year now for her eczema. Shes is feeling so much better now, so far no side effect yet. We live in Irvine California. I know exactly how you feel. I never had one happy day since she 's 6 months old. She's now 27. I hope some day eczema will be cured. Take care, Jeff.

  3. Jeffrey, I agree that you need to do your homework before you go to your doctor. As a nurse, I do this all the time. I have good MD's that listen and really try to help steer me in the right direction. Have had asthma for eons and I've been on so many medications that I can't count them. So Dupixent is the first biologic that I have tried and waiting to see
    improvements in my condition. So far, no side effects. Take care.

  4. You are so right… you must be proactive in your own health. You will understand your condition much better.

  5. You are such a strong guy, continuing to push through and live life despite your daily circumstances is definitely God given strength. Since moving to California (2018) I seem to have developed severe skin issues. After trying different topicals and prednisone and now UVB my dermatologist is pushing for dupixent. I'm not sure how I feel about it, I'm not a fan of pharmaceuticals but Ian aware that modern medicine has its place. Thank you for sharing your journey!

Leave a Reply

Your email address will not be published. Required fields are marked *