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We need more videos with Grandpa

“I know how you feel” makes my skin crawl. It makes me feel venomous. I had a friend who had a pinched nerve in his back. So when I would say “I can’t walk today” “I can’t feel my left leg” “I am so tired, I just slept for 20 hours” “i am in so much pain I can’t open my hand or move my elbow” - he would reply with “I know how you feel” “me too” “I feel the same way”. I finally spoke to him about it- before I knew I had Lyme. I told him: “look, you’ve got a pinched nerve- that’s one cause, and one symptom. I have over 40 symptoms that together all lead to incurable and degenerative diseases. So no, you really don’t know how I feel at all. And after being gaslit for 15 years by doctors, friends, bosses, family- I’m a little sensitive about it now. It makes me feel belittled. If I tell you that I’m having organ pain, instead of “you prolly just slept on it wrong, you’re laying down too much”- that is not helpful. A better response would be to say “I’m so sorry for what you are going through, that sounds awful” or maybe a hug. Or when in doubt, just repeat what I said back to me so I can feel like someone has listened.

Ty for explaining it soooo well! Sharing with my hubby!

well done young lady, thank you for spreading awareness. "lymes desiease"

As some advice, take all of your medications in med bags. It’s genuinely a life saver!

THANK YOU FOR SHARING. MY DAUGHTER COULD NOT BE SEEN DURING THE LOCKDOWN DURING COVID 19 PANDEMIC AND NOW SHE IS SUFFERING FROM CHRONIC BARTONELLA ELIZABETHAE. SHE IS INTELLECTUALLY DISABLED. Her AUNT IS A CLINICIAN AND SHE HAS 2 SPECIALISTS WORKING TOGETHER TO HELP HER. SHE HAS TEMPER TANTRUMS, ANXIETY ISSUES, LOST WEIGHT, HER EYESIGHT IS GETTING WORSE, BRAIN FOG. I LOVE MY DAUGHTER A LOT AND HOPE FULLY THESE SPECIALISTS CAN HELP HER GET CURED. KEEP HER IN YOUR THOUGHT AND PRAYERS, PLEASE. THANK YOU.

I’m in the beginning of my journey with chronic illness... I’ve been sick for 6 months.. I haven’t been healthy enough to go back to school yet though.... I want to go back so bad but at the same time I’m terrified to go back! 😭😭 I haven’t been in school since October... and I’m a junior In high school! My brain fog can get so bad I’ll forgot what I’m doing whilst doing it! 😂😂 and my fatigue is so heavy I just lay in bed all day (lol I can never sleep though because of my insomnia!) 😭😭😭🤚🤚I’ll just lay there feeling like I’m unconsciously conscious .. if that makes any sense.. in this heavy fog, to weak to lift my head... the thought of sitting in a classroom or even trying to do work out of school scares me so bad... 😂 this comment took 10 minutes to write 😂... lol it’s quite ironic that I had straight A’s before this all started. I would study for hours and hours for every test! All my teachers and friends know me as the girl I was before I got sick... 😂 idk how to explain to them that thinks are different now..

I’d like to say that in my experience, all these comments you mention are not normally said to adults. Teenagers yes. If someone spoke to me that way they would permanently be out of my life. So rude and disrespectful. You need to be built up and spoke to compassionately, not run you into the dirt.

THIS IS SO CUTE

Wondering how you are doing now?

Hang in there kid, the first ten years are the hardest! Then it gets easier. The people around us are good people that are struggling to understand what is hurting us. I cherish them for it; and then I try to communicate the difficulties and challenges I face each day. Often people say unkind things when they are trying to process something new and unknown. Are they unkind, or are they just clumsy? Chronic illness is frustrating but it can teach us patience. We fight our chronic condition to achieve victories that may be small to others but huge for us. We learn things in this fight that we can share with others. Thanks for a great video, keep up the good work.

It’s crazy how God writes our stories and changes the desires of our hearts. I love that you are taking your pain and turning it into your passion. It was the same for me. Keep doing what you’re doing, girly 💚 Love it!

I'm so thankful for posts like this that verify how I feel, not just the frustration but the extreme pain that can come from it. I know someone who HAD (past tense) a cancerous tumour and yes, still has to have the area checked here and there, but it's CURED. Not all chrnoic illnesses or cancers are alike, yet, this person seems to love to play that 'cancer card' not even have gone through chemo either, when I have seen how chemo ravages a body and have refused it as treatment myself (some chronic illnesses use the same meds - including chemo - as treatment). I definitely feel for those who face that type of illness and I am not discounting them, at tye same tume, definitely feel discounted myself when someone who HAD it and is cured is coddled, while I'm being told (esp w common acquaintances) at least I don't have cancer like that person! Ugh!!!!! That person I feel is shameful to those who actually truly suffer from more agressive/serious/later stage cancers alone! So that def makes the whoke 'at least....' part so much worse for me. The one thing though, as a woman of faith especially, is that I don't believe enough and that God would/will heal me. Or due to some past sin, or not enough prayer.... The Bible says that God works through our weaknesses. God has given me special gifts- as far as appreciating ewch and every tiny thing (when I can, I'm not perfect) that I thought I did before but couldn't without this awfulness. I know God can heal me, but it's HIS plan, not mine, no matter how I pray, and so it's like another way of discounting not only your illness but faith (maybe more as being older than you beautiful girl!) but it certainly hurts from 2 sides. I actually thanked God when I was diagnosed because not only did my drs accuse me of lying but the closestest of friends and family started as well, and it was suoer painful and made me really wonder if it WAS in my head somehow and I was super crazy! Very well done and well thought out. My fingers are hurting so thankfully for you I have to stop but God bless, take care and I wiah you the best of the best days you can hope to have!

I might not be allowed to pass this year.. but because of my brain fog I can’t remember anything, and everyone gets upset for me “not studying”, while I like learning new things but it’s not my fault 💔

What if your husband and immediate family STILL acts like asses and act like you dont have limitations at all. I guess if they ignore it, it doesnt exist. Im at a loss of words about the things people say or dont say. I am a disabled Army veteran....YEAH IM FAKING IT asshats

Very inspiring video!

People think the same thing for me too.

I figured out how to turn the "your just faking it for attention" comment into a positive thing, of course I don't have lime disease, I have spina bifida and cerebral palsy, last time a doctor told me this, I blew up on them with joy and said yay I don't have to wear diapers any more or use this stupid f-ing chair, thank you so much doc. When can you get this stupid diaper off of me. Well needless to say, that doctor changed his tune really fast. PS. Great Video!!

I subscribed so I can follow your posts to remember to pray for you. I have a ministry with refugees and have been living with autoimmune issues for a long time. God Bless :)

ive told my mom the faking one so many times and my siblings the staying home one as well.

Three things, I really love your hair and your guitar look really cool and this was really relatable thanks

I don’t think there’s anything that I’ve ever related this much to in my life. Soooo true

Thank you so much for filming this, oh my god I really needed this

I have gastroesophageal reflux disease and gastroparesis and its hard to get through my day but the people around me always support me to be positive and happy (It's also hard being a 7th grader)

Do the marks go away

Great vid. I have EDS/pots/gastroparesis/mcad/degenerative severe Kyphoscoliotiosis etc. but yeah I can still throw on nice clothes and lipstick and look normal. When I was your age- omg I got “ you should smile”.., it was sooooo aggravating- I was always in pain 24/7. Smiling was hard. The you don’t look sick and feel better soon- arrghhhhh I will never get better. People are clueless.

"You don't look sick" Cool, cause I just almost passed out while you said that, glad it doesn't show :)

Kudos for making a video. But its short on tangible usable information that helps a sufferer take steps forward. Needs specific info on how tbe disease attacks , main symptoms and key unique symptoms. Also need some treatment and survival info. And reference to how and where to seek viable help.

I suffer from.. ADHD ODD Synesthesia Ehlers Danlos Syndrome type 3 (hEDS) POTS/Dysautonomia Fatigue *in the morning and day time* Insomnia *at night* Vitamin D Deficiency Gastroparesis Delayed gastric emptying Anxiety *i have a legal learning disability* I may have OCD Fainting/passing out I have a whole more but theres too many i forgot

Some people say we're just a hypercondriact

My brain fog gets so bad sometimes to the point where i can’t even remember what my own name was. Luckily, my teacher has chronic Lyme as well so she understands how bad it is.

At the "I know how you feel" one, what if that person also has a chronic illness?

thank you for sharing info..I hope you are in better health and no longer have bartonella or any ailment..God bless.

Thanks for the video. My son was recently diagnosed and starting treatment. I hope you are now symptom free.

I have Lyme, too, and I've heard every single one of those comments! I hope you've been able to find a good treatment and are feeling a bit of relief from your symptoms!

Thanks for posting, it's hard to find good videos about Bartonella.

I'm in process of dignosis, having tests and all that stuff. People keep saying me that the results are going to be ok. That's supose to cheer me up. It doesn't. I feel sick, I have felt sick for years and regarless what these tests say that's not going to change. It only means I'd need other tests , find other doctors. Again. People think that as far I don't have a name for what I have, I'm not sick or not as sick. When people are in denial like that it only makes me feel lonely.

Wow, this is crazy! I wanted to go into culinary work for the longest time, but then, guess what? I switched to wanting to work with teens and young people, particularly girls, who have mental and physical health struggles. This was what I became passionate about especially when I became chronically ill. 😮

I really relate to this, I recently started college (in England that's the same age range as senior year) with chronic illness, and yes, it's hard!

Hey, I have a chronic pain condition called Visceral Hyperalgesia. I've had non stop 5/10 pain for over 10 months. I have attacks that r stabbing like pain episodes everyday and currently staying strong! I can relate sooooooo much to every single thing that u say!! Pls make more vids on this! ❤️

That's awesome!!! Proud of you!!!

what a great video !!! Love this ,You go girl! 💗

you have such a heart for the Lord. I love you

Thank you for sharing this! You are incredible! All of this is oh so true!! We are always cheering you on!

Your voice is so beautiful!!!❤️

People are stupid and typically self-involved and self-righteous. Not unless you meet a uniquely intelligent person or someone who has been forced to witness human mortality and reflect on it, do you find real support. I hear this BULLSHIT daily. Even from what would look like intelligent people or people in health care settings.

Really great and comforting video - it's comforting to hear from others who have experienced the same things. Why are people so dismissive of us? as if we don't have a grip on reality? I was just told on Friday, "Maybe you just think you feel better when you stay at home," when I've been so sick lately I can't go to work and am super stressed out about finances now about it (missing work today too), but yeah, maybe I just THINK I feel better when I stay at home.... I'm not really in pain when I don't... seriously, what the eff?

So so wonderful 👏🏼💚

Excellent! Keep the songs coming!

Making the world more wonderful as always :)