Seeing Brylee with the team from the grocery melts my heart. It makes her whole week to get ten minutes of undivided attention from strangers. Gives me the feels.
I'm happy you were able to start your transfusion again. We're still in a holding pattern for my dad's transfusion. He has a form of ALS and the med has kept him stable and mobile. We'll see what happens now but hope you get back to your baseline quickly. 😊
Oh Dolores I’m so sorry to hear that about your dad. Waiting on decisions by healthcare providers or insurers is awful. Literally a gut punch to have to wait for care. I’m sending you love and good vibes! 💜
YAY!! twinning day. the 30th was my appointment day after 4 month wait . I fortunately don't have the same symptoms as you xxx So happy to see you getting the Meds FINALLY!! it sucks big time that you even have to deal with all that crap (literally) every year. Brylee is so cute!!! it really does make her whole week getting all the pets from the lady at the grocery store ( I also shop like that! LOL) Sending you all the love in the world my friend 💜❤💜
Rose!!! My bestie for the restie. Loved we were twin zone! It’s the best kind. Hope you’re getting some relief! Brylee just makes our life brighter. She is funny and her attitude makes her even more lovable. 💜 I won’t go back to grocery shopping for myself again. ✅ Big hugs Rose!!🌹 💜💯
YAAAY for medicine finally in your system. Nay that it took so danged long to get you back to feelin better. I'm also glad you had the nausea meds belly gut nausea is awful. That Bry face omg the side eyeing on that girl. Sweet she's got a buddy at the store to visit with. Very adorable.When we were able to go out a lot. Mom would have to know exactly where the bathrooms were. This is pre(the battle) of the other thing. Also mom told me tonight that I apparently had fistulas when I was a baby. But they didn't seem concerned to want to take a look at that. It even frustrates mom.
I know Labyrinth! What a release of relief to get that needle in! Woot woot! Brylee keeps me going on tough days. Her side eye game is on point. She absolutely LOVES the ladies at the grocery store. Which I get a huge kick out of. 🤣 I’m so able to relate with your mom. And that’s wild about the fistulas. I’m glad it was when you were little and couldn’t register the pain to your memory, because they are about fun! I’m frustrated right along with your momma. But glad they never came back. 💜
Yay! Infusion finally! I'm so happy that you are finally getting your meds, hope they work into your system quickly and you start to feel better. Hope it lessens the diarrhea soon. I know meds can take a little bit to take effect even with being injected straight into your blood strem.
It took about a week to feel normal. But so grateful. Ot was a long month with lots of uncomfortable moments over the last month! Hope you're feeling well Kat!
I’m glad you were finally able to get your infusion. You tickle me--‘the blankets are more like felt.’ 😅I knew what you mean. I carry a small blanket with me everywhere I go. Nice video effects.
I’m glad I’m not alone about the blanket. But seriously why do those places have to be so cold? 🥶 Ugh. Thank you Dee. It was a relief. Genuinely gratitude and relief is my main vibe. 💜
I’m sorry to hear that my friend. I’m a text away if you need anything specific answered. The medicines and treatments have come a long way! Odd fact, there is a very large cluster of Crohn’s patients that attended JC Public Schools between graduating classes of 1996-2006. Something environmental (think milk pasteurization or something that would have impacted school lunches) impacted this group. Not saying predisposition didn’t play a role, but environment always plays a role too. Just found it interesting that there are two studies that I’m aware of looking at the clustering of cases, with one being JCPS.
@@JoeyPaulOnline thank you for that. I was a bit nervous when they mentioned it, but knowing someone who has been there, done that always takes some of the fear away.
@@BarrettLaurie my first was done under a general and second was done under local - much preferred the second for the placement as well. It means not just IV sticks lessen, but blood draws too. They get blood from mine all the time because it’s pretty much the only way to get blood outa me these days. You’ll have a better time because they’re chest area and you don’t have the boobs to worry about! 😂 Care of them is pretty simple, depending on if they have you trained in doing it (my team said no because I won’t need to access it myself) or just the nursing staff, but it’s just one stick and they have all the access they need. Mine is accessed and flushed every Mepo because it’s not in regular use at the moment, but they’d use yours for infusion so they’d do both at the same time. That’s just all I can think of, but any questions, happy to talk you through it. Can be scary, but also life changing because you’re not as anxious about how many sticks it’ll take to get an IV or blood. And you barely feel the one stick it takes tbh.
@@JoeyPaulOnline this is perfect. I’ve heard how easy they are to have. My average is 2-3 sticks every visit. Ugh. So the idea of making that easy is so great. I can’t thank you enough for being so open and sharing your experience. Takes the fear away. 💜💯
While I hate to hear about your son’s diagnosis, in my experience, with the right doctor’s care, and treatment plan, you can expect him to recover and find his way to remission. The road is sometimes rocky, but in the end he’ll come out the other side stronger, wiser, and more compassionate for others who suffer from invisible chronic illnesses.
SENDING LOVE AND HEALTH FROM CALIFORNIA. A DEAR FRIEND OF MINE SUFFERS . THE INSURANCE COMPANIES ARE SO CORRUPT AND GREEDY GODSPEED ON GETTING EVERYTHING YOU NEED❤ MAGGIE MENTIONED YOUR CHANNEL ❤ NEW SUBSCIBER...
Hi Kitty! Insurance is legit the worst! Ugh! Thank you for the well wishes and please give your friend my best! Suffering from Crohn’s is tough enough without having to fight for our meds! Nice meeting you Kitty! I’m so grateful to Maggie. I’m a huge fan of hers and appreciate her shoutout! 💜💯
Do you think bowel surgery might be an option for you in the future. I tried 2 biologics. Infliximab and stelera. They were pretty useless for me and made me worse. I have an ileostomy now but i still have blood and mucus every day. Im trying to get a colonoscopy and more bowel surgery. Might help me. Fair play you work. Maybe you do IT? I found your videos very good. I thought id ask a few questions. Thanks for highlighting articulately what a person with ibd experiences.
Thanks for stopping by! I do think bowel surgery is in my future at some point. The thing is, when my insurance company isn’t messing with my meds (overriding my doctor) as long as O don’t eat the things I know will make my intestines hate me (but sometimes I risk the 💩 for a 🍔) I’m kept on remission and healthy. Literally 99% of my issues with my disease since I was diagnosed is the result of my health insurance company denying care. They (health insurance) switched me to inflectra a few years ago and I suffered terrible side effects and went into a flare. It was a mess. However, I don’t fear the day an ileostomy comes into my life. So many of my Crohnies have been there, any lingering concern washed away years ago! I’m glad you’re hanging in there. Thank you for the kind words and I hope to chat in the comments again soon. 🫶🏻
Seeing Brylee with the team from the grocery melts my heart. It makes her whole week to get ten minutes of undivided attention from strangers. Gives me the feels.
Same. She’s treated like the queen she is there. 💜
My son and dad had crohns. It’s such a tuff disease. Prayers to you!
So happy you got your infusion!!! So cute Brylee and the grocery staff interaction.
Thank you! And wasn’t it?! It always warms my heart to see how happy she is to see them. 💜❤️💜
I'm happy you were able to start your transfusion again. We're still in a holding pattern for my dad's transfusion. He has a form of ALS and the med has kept him stable and mobile. We'll see what happens now but hope you get back to your baseline quickly. 😊
Oh Dolores I’m so sorry to hear that about your dad. Waiting on decisions by healthcare providers or insurers is awful. Literally a gut punch to have to wait for care.
I’m sending you love and good vibes! 💜
YAY!! twinning day. the 30th was my appointment day after 4 month wait . I fortunately don't have the same symptoms as you xxx So happy to see you getting the Meds FINALLY!! it sucks big time that you even have to deal with all that crap (literally) every year.
Brylee is so cute!!! it really does make her whole week getting all the pets from the lady at the grocery store ( I also shop like that! LOL)
Sending you all the love in the world my friend 💜❤💜
Rose!!! My bestie for the restie. Loved we were twin zone! It’s the best kind. Hope you’re getting some relief!
Brylee just makes our life brighter. She is funny and her attitude makes her even more lovable. 💜
I won’t go back to grocery shopping for myself again. ✅
Big hugs Rose!!🌹 💜💯
YAAAY for medicine finally in your system. Nay that it took so danged long to get you back to feelin better. I'm also glad you had the nausea meds belly gut nausea is awful. That Bry face omg the side eyeing on that girl. Sweet she's got a buddy at the store to visit with. Very adorable.When we were able to go out a lot. Mom would have to know exactly where the bathrooms were. This is pre(the battle) of the other thing. Also mom told me tonight that I apparently had fistulas when I was a baby. But they didn't seem concerned to want to take a look at that. It even frustrates mom.
I know Labyrinth! What a release of relief to get that needle in! Woot woot!
Brylee keeps me going on tough days. Her side eye game is on point.
She absolutely LOVES the ladies at the grocery store. Which I get a huge kick out of. 🤣
I’m so able to relate with your mom. And that’s wild about the fistulas. I’m glad it was when you were little and couldn’t register the pain to your memory, because they are about fun! I’m frustrated right along with your momma. But glad they never came back. 💜
Yay! Infusion finally! I'm so happy that you are finally getting your meds, hope they work into your system quickly and you start to feel better. Hope it lessens the diarrhea soon. I know meds can take a little bit to take effect even with being injected straight into your blood strem.
It took about a week to feel normal. But so grateful. Ot was a long month with lots of uncomfortable moments over the last month!
Hope you're feeling well Kat!
I’m glad you were finally able to get your infusion. You tickle me--‘the blankets are more like felt.’ 😅I knew what you mean. I carry a small blanket with me everywhere I go.
Nice video effects.
I’m glad I’m not alone about the blanket. But seriously why do those places have to be so cold? 🥶
Ugh. Thank you Dee. It was a relief. Genuinely gratitude and relief is my main vibe. 💜
So happy that you will finally get some relief.
Me too! Finally!!!
Sending you love and good energy Bonnie.
My cousin has crohns. I only recently found out. Only heard about the symptoms. I need to watch your channel more. Educate myself.
I’m sorry to hear that my friend. I’m a text away if you need anything specific answered.
The medicines and treatments have come a long way!
Odd fact, there is a very large cluster of Crohn’s patients that attended JC Public Schools between graduating classes of 1996-2006. Something environmental (think milk pasteurization or something that would have impacted school lunches) impacted this group. Not saying predisposition didn’t play a role, but environment always plays a role too. Just found it interesting that there are two studies that I’m aware of looking at the clustering of cases, with one being JCPS.
So glad you got the infusion finally, and gotta say I do not miss multiple needle sticks, love my port. Just makes my life so much easier!!
I was told a port might be in my future. I may bug you with some questions if that becomes a reality next year. I’m it a fan of the sticks. 💜💯
@BarrettLaurie I've had two in 9 years and I am a big fan of them! Any questions hit me up, always happy to help!
@@JoeyPaulOnline thank you for that. I was a bit nervous when they mentioned it, but knowing someone who has been there, done that always takes some of the fear away.
@@BarrettLaurie my first was done under a general and second was done under local - much preferred the second for the placement as well. It means not just IV sticks lessen, but blood draws too. They get blood from mine all the time because it’s pretty much the only way to get blood outa me these days. You’ll have a better time because they’re chest area and you don’t have the boobs to worry about! 😂 Care of them is pretty simple, depending on if they have you trained in doing it (my team said no because I won’t need to access it myself) or just the nursing staff, but it’s just one stick and they have all the access they need. Mine is accessed and flushed every Mepo because it’s not in regular use at the moment, but they’d use yours for infusion so they’d do both at the same time. That’s just all I can think of, but any questions, happy to talk you through it. Can be scary, but also life changing because you’re not as anxious about how many sticks it’ll take to get an IV or blood. And you barely feel the one stick it takes tbh.
@@JoeyPaulOnline this is perfect. I’ve heard how easy they are to have. My average is 2-3 sticks every visit. Ugh.
So the idea of making that easy is so great.
I can’t thank you enough for being so open and sharing your experience. Takes the fear away. 💜💯
My son was diagnosed with Crohns.. asking about fissures.. I know in your previous videos you spoke on them. Are they gone? If so
While I hate to hear about your son’s diagnosis, in my experience, with the right doctor’s care, and treatment plan, you can expect him to recover and find his way to remission.
The road is sometimes rocky, but in the end he’ll come out the other side stronger, wiser, and more compassionate for others who suffer from invisible chronic illnesses.
SENDING LOVE AND HEALTH FROM CALIFORNIA. A DEAR FRIEND OF MINE SUFFERS . THE INSURANCE COMPANIES ARE SO CORRUPT AND GREEDY
GODSPEED ON GETTING EVERYTHING YOU NEED❤ MAGGIE MENTIONED YOUR CHANNEL ❤ NEW SUBSCIBER...
Hi Kitty! Insurance is legit the worst! Ugh! Thank you for the well wishes and please give your friend my best! Suffering from Crohn’s is tough enough without having to fight for our meds!
Nice meeting you Kitty! I’m so grateful to Maggie. I’m a huge fan of hers and appreciate her shoutout! 💜💯
is the reminder helping ? And do they give hydration with the infusion?
Yes, for sure it is! And they do offer refreshment and my Remicade is infused with a saline drip meaning extra hydration, once the needle is in!
I just found your channel. Im curious --have you heard of the carnivore diet. So many people have found healing from Chrons using carnivore.
💩
Is that dog grossly overweight? That's sad
Do you think bowel surgery might be an option for you in the future. I tried 2 biologics. Infliximab and stelera. They were pretty useless for me and made me worse. I have an ileostomy now but i still have blood and mucus every day. Im trying to get a colonoscopy and more bowel surgery. Might help me. Fair play you work. Maybe you do IT? I found your videos very good. I thought id ask a few questions. Thanks for highlighting articulately what a person with ibd experiences.
Thanks for stopping by! I do think bowel surgery is in my future at some point. The thing is, when my insurance company isn’t messing with my meds (overriding my doctor) as long as O don’t eat the things I know will make my intestines hate me (but sometimes I risk the 💩 for a 🍔) I’m kept on remission and healthy.
Literally 99% of my issues with my disease since I was diagnosed is the result of my health insurance company denying care.
They (health insurance) switched me to inflectra a few years ago and I suffered terrible side effects and went into a flare. It was a mess.
However, I don’t fear the day an ileostomy comes into my life. So many of my Crohnies have been there, any lingering concern washed away years ago!
I’m glad you’re hanging in there. Thank you for the kind words and I hope to chat in the comments again soon. 🫶🏻