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Depression and Heart Disease

100 thoughts on “My Chronic Illness Flare Up Protocol | Home Hospital 😷 (2/19/19)

  1. Have you ever gone to a medical marijuana convention? They exist in my area. Conventions include many experts on medical marijuana who you can ask questions to. There are also many lectures. It might be worth going to a convention so you have many experts you can ask questions to. I don't know if you are willing to travel, but there is a medical marijuana expo near me in Akron Ohio on March 23. It is called the Ohio Marijuana Expo. There are probably conventions closer to your area you could go to that would be more convenient for you.

  2. How do you know when its one of your chronic illnesses flaring or whether its something that people without your conditions get normally anyway, like the flu etc?

  3. Glad your doing better than yesterday I hope you keep going forward and improving love you Jacquie you are such a strong person

  4. i doubt your going to see this comment but i am going to ask anyway but first just a disclamer i have dyslexia witch affects my spelling. back to my question i have been having weird symtoms for a little over a year now ( i am 17 now) i have been getting random bruises most of them i dont know where they come from and i have been having pain in some of my joints rapidly and most of the time it happens even when i have been lounging around all day or for a few days in a row ( i have also had other symptoms but those are like the big ones if that makes sence) anyway i finally went to my dr and i got blood work done and everything they tested for came back normal my mom doesn't think they will do anything more and is just saying its a growth spert but i have been in the same weight range and the same hight since 8th grade so i dont belive thats it.i went to the dr again today and she told me to take a multivitemen every day and come back in 6 months if nouthing chnaged but my mom brought it down to 6 weeks i am just frustrated that my dr not even trying to do anything for my joint pain and is telling me its cause i am still growing idk what i should do. should i get a second opineon or just wait and see what she will do idk any idea what i should do

  5. I feel for you Jaquie. Nausea and vomiting is the worst. Did the doctor think it was possibly a stomach virus as opposed to a flareup of your chronic illness? Even a chronic illness warrior can still acquire a run of the mill virus. I'm just hoping you feel better soon, whatever the cause. And I agree with you about Harlow–always adorable.

  6. Glad you're doing better! My MMJ journey has been frustrating as well. Have you ever tried peppermint oil for neasuea? You don't have to eat it, just smell it. You can put a dot of oil on you or have peppermint scented candles or tarts. I know you had a tart burner at one time. It doesn't always help if I'm too far gone but a lot of time that helps me.

  7. Happy you are feeling better. Have you tried vaping a small dose when you are very nauseous? I recently had a GI virus, and was shocked at how well it helped me.

  8. Have you thought about going into the medical field? Possibly helping adults/children with chronic illness as well. You would have the first hand experience for it. Just a thought.

  9. In my experience with cannabis, it works wonders for nausea and appetite but does little for my chronic pain related to AI and vertebral compression fractures. I've heard others say that mmj does help their pain, so maybe it just depends on the type and location of pain 🤷‍♀️ I had a nerve conduction test done this morning which was a very strange feeling lol…have you ever had one Jacquie? Sending healing thoughts and prayers your way! Just stay relaxed and let your body rest up.

  10. 9:39 What was that sound?
    10:33 Ooo, I so don't like this transition. 🙁
    Uh…Harlow…? Do you mind…? 😉

    I'm glad you're doing better, Jaquie. Oh, and thank you for demonstrating what you have to do with your medical condition.

  11. I had a gp flareup plus a really bad cough . Was admitted to the hospital Monday and I’m supposed to get an endoscopy tomorrow

  12. hi, marijuana cbd capsules work better. they stay in your system longer. cbd oil and capsules are better than what your taking. use sativa oil or marijuana (vape) for short term pain. if your taking panic attacks or getting triggered in some way take a bit of indica oil. it will calm you down. if you want anymore advise let me know.

  13. Hi Jaquie, you do so well with all your symptoms! I also have felt nauseous and achy the last few days, I also live in central Florida. I recently got a Barometer app. And have noticed a correlation between worse symptoms and very high or very low barometric pressure. Yesterday for example it was 30.29 which is way high. 30.08 seems to be my sweet spot. Very low can be 29.7 for example, which also aggravates my symptoms. Barometers are very sensitive to air pressure, a miniscule change in pressure can make a big difference. Not that we can do much about it, but I have noticed changes in my body depending on this external factor. Plus we have just had a full moon which puts pressure on bodily fluids. More bloating, increased digestion, nausea etc. Anyway something to consider when looking at flares.

    Also try fresh ginger tea, for me it was more effective than Zofran, you can add more ginger depending on severity. Just add raw ginger to boiling water, let steep 15 minutes or so, drink hot or cold.

  14. Praying that your flare ends soon! I get this alot that people say I'm sorry you have a port and home health, But to me its don't feel bad. Yeah I'd rather not have it, But I'm thankful for these treatments. Probably off topic. How do you respond to those comments? A shower is a huge accomplishment that others don't take for granted, but we celebrate it! I recently got a shower chair its been so helpful. Anyways glad your feeling better.

  15. Audio Books – your library likely has FREE audio books that you can access and download from home! My library uses an app called Hoopla and it is GREAT! I canceled my Audible subscription. 💕💕💕Harry Potter

  16. There are a fair amount of studies that show the connection between pollution and autoimmune,mast cell activity.
    Here are two studies that helped me to understand my autoimmune flares.
    I do not need high levels of pollution to trigger a flare. Being in a car is way too much unless very effectively filtred. sitting at the terrace of a bar in town is also more than enough ,walking on the pavement next to a not very busy road,being in a commercial carpark without mask,etc,etc Any type of physical activity increases the air intake and therefore the intoxication.
    It is easy to considerably reduce your exposure and breathing clean air will not make your problems worse but it might make them considerably better.
    www.medicine.mcgill.ca/epidemiology/Joseph/…/Bernatsky2016.p...
    www.jacionline.org/article/S0091-6749(00)54197-9/pdf

  17. Our dogs do know when we're under the weather. Our Layla is a Blue Heeler mix. But when I got sick she stayed with me in the bed for two years. We occasionally made it to the recliner. She would go outside to take care of her business, go eat and be right back on the bed to watch me sleep.

  18. I’m happy your flare up cleared up ❤️ and glad you were able to get the rest you needed 👍🏼

    Happy hippo was there for you as well! She’s a champ

  19. powerade and gatorade never agreed with me, but I found a new electrolyte drink called bodyarmor that agrees with me much better. it doesn't have any artificial colors/flavors/sweeteners and it actually tastes good. orange mango and lemonade are my favorites.

  20. Hugs sweetie. Have you tried the delta 8 pod from Trulieve? It's the ONLY thing that settles my tummy and I was admitted monthly to the hospital. Everyone is different but it's worth looking in to. If I can help in ANY way dont hesitate to reach out. I'm also a florida mmj patient for over a year. Hugs from new port richey

  21. Praying for you darlin… I understand you have a lengthy and complicated health history and a great group of doctors… But at the end of the day Jackie there is no greater healer than the Lord Jesus… I summit to you that if you put Him above All in your day, allow Him to rule your heart and guide your time … Each day everyday….staying away from the pharmakia (sorcery of marijuana) and cry out to our heavenly Father … casting your burdens upon him, trusting that He alone is Healer, Saviour and Redeemer… that your health would be changed… Your life would be changed and your worries would be gone… Many claim to know our Lord , many claim to believe ..giving glory with only their lips yet their hearts are far from him… Willing to die for him but unwilling to live for him too… Only crying out in prayer when tragedy strikes or fear has gripped their hearts… not many truly even know Him or even come to Him to worship and talk and truly sup with Him… Nor do they trust Him…. Do you believe in the power of God who created you and died for you that you could live…. Do you give glory to Him daily? Is He Lord over your life, house, heart… First on your mind and last at the end of your day? Declare Him… Only Jesus saves! May he lead your heart away from the things that keep you from his will .. It may seem innocent , Harry Potter but while you serve that book you are not seeking Him, have you studied Gods Word, have you read it each day as commanded.. Do you know He can make blind eyes see, the lame walk and raise the dead…. Do you not Believe in His power…. There are few that do… There are many called and only few chosen.. narrow is the path that leads unto salvation few there be that find it… Religions have blinded the world and turned from the truth that sets one free… We are outside the religions, we are the hands, feet and mouth of Jesus Christ our Lord God, Creator and Savior and we are called to His purpose…. Turn from idol things that don't edify, heal or save, turn from sinful things such as the cannabis program that closes ones spirit from desiring to serve our Lord… You are called to be a living testimony for the Lord Jesus Christ.. Our Lord God and coming King .. Your life has purpose that you will not accomplish if you do not turn to him who calls you… It is not you who chooses our Lord but He who chooses and calls you…. He could heal you and use you as a lively stone at the Corner Stones command… Your platform enables you to call all the sick and hurting to our Lord and Savior that they can be healed, saved, loved and changed in Christ our Lord… Yet you glorify him not…. I have followed a longtime and have yet to hear His name.. I know you prayed when the flood was coming that your house would be spared.. But the flood is one you can not see and had swept over most all houses and towns of America and throughout the world.. Jackie go unto his Word and ask him to show you His will and His way.. The time of ignorance has been fulfilled and He is at the door knocking.. Are you going to let Him in??.. put down the book of sorcery and pick up the Word of God …Read your Bible and be healed in Jesus name.. And then go out and proclaim him to all the world.. to the sick to the sinner,to self righteous, to all the world… That on that day when you face him and give an account for your life the blood of many will not be upon your head.. Neither will their outcome be on your hands… You will have done your part and that day you will live and be forever healed…. Bless you and may the Lord touch your heart today and open your eyes to His calling that you may be saved and used by Him…. Shalom aleichem Jackie Godspeed…Romans 10:9 ;Titus 2:13 ; John 1; Revelation 13; Matthew 24;25.. Hebrews 3:10-14; Hebrews 4:1 go and read these things that matter and change hearts and heal…. Good day

  22. Jacque please start taking colloidal silver ….please …you dont seem to respond to comments much so i dont usually comment alot …..but i feel compelled to tell you to take one dropper daily of 500ppm Silver Wings brand

  23. Could it be your EDS that "eats up" the cannabis before your brain can regestrate it? Like with narcotics?
    Really hope you feel better soon! And snuggles to Harlow!

  24. Cool glad you're trying to read the books I hope you like them I enjoyed listening to them so much in fact I have all of them mostly on CDs and cassettes though LOL feel better soon

  25. I’m not sure if your local library participates but the Tampa Bay Library Consortium has audiobooks. It’s really nice because i don’t have to leave the house to borrow them.

  26. To get a better understanding as to why you’re taking more frequent doses type “pharmacodynamics by professor fink” on youtube Skip to 7:15 in the video and watch till 10:35 it’s really interesting when you dive into how it all works 😀

  27. Have you ever tried putting an ice pack at the small of your back when nauseated? I get migraines that cause nausea and that often works to calm my nausea.

  28. I'm glad you are feeling better! I am not surprised that the you have a high tolerance for medical marijuana. Your body doesn't necessarily have typical reactions to medicines so I'm not surprised natural remedies are not as effective either. I'm sorry neither works that well. Not like for other people. I have the same problem. I don't always react the way the average person does to meds either natural or man-made. We keep trying though!

  29. I am allergic to most hand sanitizers, I was wondering if you are allergic to any or have to use a certain brand? I'm glad you're feeling better!

  30. Oh,!~ I am so glad you are reading the Harry Potter books! They will give you so much more information. And you will find characters such as George and Fred show up more in the books than the movies.

    Your Dad is so darn sweet! And it's so obvious he loves you to the moon and back!

  31. Hey Jaquie! Sometime, would you share why you switched from a Vog Mask to the Cambridge? If she already told us, would someone tell me? Thanks!

  32. Yay! Glad you're feeling better. You will LOVE the Harry Potter books. I listened to them on CD too. Jim Dale is the absolute best reader.

  33. I love Audible! I’ve found that my library also has audiobooks that you can download and listen to. It really helps cut the cost of purchasing them all.

  34. I love my Atarax!!!!! However, I use it to help prevent nightly panic attacks in my sleep. Works wonders for many things!

  35. Have you asked your gastro doctor if you could try marinol for your gp symptoms? It’s covered by insurance and would allow you to get the narcotics from the pain doctor.

  36. Ugh, flare ups are the worse. I’m currently fighting a flare up currently, but I was really excited that I got my LUS delivery today. I do have curly hair and per your recommendation I was excited to try it out. I am excited to try it out tomorrow. Hope you are feeling better today!

  37. The minute you started saying what Judd had said I for some reason heard it in his voice 😄. I’m glad that you’re starting to feel better. Sending positive thoughts vibes your way 💕💕.

  38. I was just diagnosed with bile reflux gastritis after months of vomiting and stomach pain. I was just put on Zofran 4mg dissolving tablets for my nausea and I am so thankful that it is helping with my symptoms. 🙏🏻 thank you for sharing your story with us.

  39. Is it possible your high tolerance to medical marijuana is due to your Ehlers Danlos syndrome? I wonder because of your issues with sedation. Hope you all have a wonderful day!

  40. My sister has everything set up near her hospital bed. When she has a seizure that lasts longer than an hour she has a shot to give her. All her supplies are nearby in drawers and on shelves as well as her pump for feeding tube. She has her blankets and dolls and toys near her bed to keep her occupied and her tv is on Disney jr all day. She has CP and is confined to a bed and wheelchair. She is no audible but can make sounds. She has scholorosis too. My sister wears diapers like infants. She is like a large infant.

  41. Your videos are so inspiring; while I don't have all the same conditions, I do have POTS in common with you. And if I could ask a question…Something that I'm struggling with is feeling comfortable dating. I have a bit of a mental block about allowing anyone to care for me romantically, because I feel like allowing someone to start caring for me, when they don't understand what life would be like w/a partner who has POTS, would be selfish on my part because I do know. And I couldn't in good conscious let my illness effect another person's life. Or worse, give someone a chance and then get dumped because of my illness. I feel like that would be far worse than just flat not trying haha. Do you have any advice on how to get over that?

  42. Hay y’all
    To jaquie and Jadd & Harlow
    You please subordinated my boyfriend YouTube channel Lucas Silva world life adventure

  43. Hi Jaquie, I truly hope your flare up is gone now. However, my brother suffers from GI issues as well and was recommended RSO medical marijuana oil from fellow GI patients and I wonder if that could help you because the oil helps with his symptoms and the higher dosage has also helped him. Hopefully your new medical marijuana doctor can help
    You find the perfect fit and maybe the rso oil can help. Wishing you the best!🙏

  44. Thank you for the video and ideas <3 I so hope your flare passes soon. I am having a mast cell flare right now, which of course made my POTS 10x worse. It’s frightening because my tendons are doing weird things even my specialists haven’t seen. I just really want the pain to be done, I’m so tired. I will keep you in my thoughts and prayers <3 I know this flare will not last forever and that I will be okay but a lot of these symptoms are so new and scary, and I’m sure you of all people know that when even the expert docs have no idea what’s going on the uncertainty and fear and pain is just so hard. Just gonna be here with my steroids and benadryl and quercetin and 72 other drugs for EDS/POTS/MCAS and tide it out.

  45. I'm all for treatment that works, it's so sad that there's a stigma associated with narcotic pain meds. They WORK and work well for many people with painfully chronic illness or injuries. It's not fair that people are denied proper medical treatment for pain, because of the stigma which the general population doesn't understand how pain medication has improved the lives of millions, without being addicted to this form of medical treatment that is covered by insurance therefore making it more affordable for those on on limited incomes. Medical MJ is NOT a cure all, that is why I will continue to advocate for all forms of medical treatment for pain! And what work's best for the individual patient's, not stuck in some one size fits all box that C D C has inflicted on the chronic pain community! She shouldn't have to choose, and suffer!! Chronic pain patients are fighting back, to put CARE back into HEALTHCARE, if you'd like to help then go to dontpunishpainrally.com for more information!

  46. My shower with my CNA turned into an ambulance ride. Diagnosed with a viral bronchitis, not flu at least, but ugh. My mouth was turning blue, severe headache and blood pressure was up to 179/132. Not good. Fever spikes up to 102. Back to normal, 98.6 now but I keep going up and down. bed rest and lots of fluids. Follow up with my doctor by Friday to recheck my breathing and make sure it is not changing to a secondary bacterial infection.

    All I could think of though was at least I got my shower in. Yeah.

  47. Heya Jaquie, I was curious to know, what kinda mattress do you guys have? My chronic illness doesn't involve my joints, but I still wake up so sore and stiff most days and I'm overwhelmed with options! I figured a recommendation from you would be fairly high praise for any mattress brand out there 😉

  48. Its a process to go through and edit vlogs. If you use audio books because you can't read from migraines? How can you handle editting?

  49. I’m in an ibsd flair which makes me dehydrated so my oh dysautonomia act up. I’m trying to fight Docters for Iv fluids got any tips or links for good medical information to bring in with me?

  50. Hey Jaquie! So glad you are feeling better! I have a theory about why the cannabis products aren't working as well for you: maybe due to the EDS? I say this because you metabolize sedation meds really quickly and perhaps the same goes for the cannabis? Just a thought. I hope you continue to feel better! Harlow is the best hippo ever!!!

  51. What are you throwing up?
    You said you're feeling nauseous and throwing up quite often but there's no food in you to throw up, so could it be all the stuff you're pumping into you makes you sick?

  52. Thank you for that video Jackie sometimes I feel like I'm the only loser that can't recuperate.
    I do not mean that you
    are a loser I really don't know how to explain it but it's difficult when everything goes wrong with your body and your emotions, and, you just have to take time out and when I'm at that point I feel like I'm very different from the majority that keeps going.
    Sometimes I feel a lot of guilt.
    Well that probably doesn't make much sense to you but I just want to emphasize that you are very much appreciated and I am grateful that you share to viewers what it's like to be very sick.
    You look better the next day .
    It's good to see you smiling you're a cutie, and that Harlow 🙂

  53. Hey! So in regards to your cannabis journey, I've personally struggled with finding something to work for nearly a year. Found that dabs or wax are best for my symptoms. It doesn't 100% help everything but the difference is very noticeable when I'm out. I hope your flare ends quickly🖤

  54. COULD YOUR SICKNESS BE ENVIRONMENTAL: DETERGENTS, DRYWALL, PAINTS, FEATHER PILLOWS, DYES IN COTHING, DYES IN FOOD, LAMINATE, SOAPS, MODIFIED WOOD FURNITURE OR FOOD PRESERVATIVE, FOAM INSTALLATION, PLANTS OR FLOWERS, TAKE CARE

  55. You would be a wonderful nurse! I have been trying to navigate my own autoimmune issues. Thank you for the tip about the ice pack to your neck and heating pad to your abdomen and back. You are an inspiration to others. Thank you for sharing your story. Sending you gentle hugs!

  56. If you like podcasts (or if you've never listened to one) I HIGHLY reccomend listening to Potterless along with reading/listening to the books. I've re-read the books in the past few months and listened to Potterless right after the chapters and it is so much fun
    https://www.potterlesspodcast.com

  57. I have a chronic condition & when it flares up I end up in the ER but now since we know it's chronic they say I need to self manage, when to manage a flare up I need a hospital set up. I honestly wish I could do a home set up to get relief without being shamed by doctors

  58. Hi jaquie. Do you have a waterproof mattress cover? They make thin vinyl like ones now so they're not all crinkly plastic. I have found mine really useful since getting really sick. It's just so much less of a worry when you're not as concerned about destroying your mattress and it makes clean up much easier after you've been sick. It's also been useful with my service dog because he's also gotten sick on the bed a few times. I highly recommend the water proof protector under a normal protector- only wash it a few times a year or when it's dirty. ♡♡

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