Torofy Blog

Depression and Heart Disease

Feeling Out of Control with Chronic Illness (6/20/17)


When you battle a chronic illness, that lack of control is gonna be there, and it gets frustrating. -intro music- Jaquie: We’re going on an Adventure! Judd: Ah! You’ve got freezing cold hands! *they both laugh* Judd: Eew *they both laugh* -intro music continues- Good Tuesday morning, everyone. I had a rough night last night. For the first time in a long time, I had an angiodema attack. And, for those of y’all who are new, my angioedema attacks are where my body goes through sporadic and rapid swelling And we were laying in bed about to go to sleep and it started with the bright red rashes I get on my arms and my breathing became labored. My throats began to shut tighter and tighter so Judd got up, got my emergency medication kit, and put IV Benadryl through my port and that aborted the episode. But even after the medication helped me I still did not feel quite right and having to fall asleep making sure you have epi-pens within arms reach is just- it’s unsettling. It’s scary, it’s not a good feeling, but despite all that, I did make it through the night. No hospital trips, no epi-pens. God saw us through, and for that I’m really grateful. A few minutes prior to the start of the angiodema attack, Harlow was acting weird. She was pacing, she was staring at me dead on, and she was whining. Which is not typical behavior of her, but we couldn’t really tell what she was trying to say to us because Harlow doesn’t typically alert to my angiodema attacks. It’s not like when she alerts to my fainting episodes because with that she’s very deliberate, it’s very obvious what she’s saying. But last night, even though we couldn’t really tell what Harlow was trying to say to us, it was obvious that she knew something was wrong. But even though we didn’t understand her warning signs, we were still able to handle it. [Jaquie to Harlow]: And I’m proud of you for being so intuitive. As ya’ll may know, we don’t know my triggers for my angiodema attacks. My angiodema stems from my severe immuno-dysfunction. So we know that I have angiodema because my immune system is very dysfunctional, but we don’t know what triggers the attacks. Although we know some of my allergens. I go into more detail about that in the angiodema section of my Chronic Illness Video. If you wanna learn more about my angiodema, you can go to my hospital blog playlist. My angiodema put me in the hospital a lot this year, especially pretty much all the month of January. So you can learn more there. I know several of y’all have been wondering what happened to the angiodema attacks. Well it’s not that they’ve disappeared. As of right now there is no cure for angiodema and it’s something I’ll most likely have for the rest of my life. My doctor speculates that perhaps in the beginning of the year when I was having them very often, that I was in a flare and it’s dissipated. But, there’s really no way to know for sure. Chronic illness is very unpredictable and there’s no way for us to really know how the attacks are going to present themselves in the future. I could have zero attacks today and I could have upwards of five or more tomorrow. There’s no way to know for sure. And that’s why I really try to take everything one day, even one hour at a time. Because chronic illness is so unpredictable. I just want to make the most of whatever moment I’m in. And that’s why we’re always ready for the attacks too. That’s why we always leave my port accessed and we have IV Benadryl ready to go in my emergency medication kit. Because the attacks come on so quickly and progress so quickly we have to be ready and act fast. We always have epi-pens ready to go in case IV Benadryl doesn’t work. And we’re just always ready to handle my chronic illnesses as best as we can and to do all that we can to keep moving forward in this crazy life with all these chronic illnesses. Today I am feeling exhausted. Having an angiodema attack takes a lot out of me. Emotionally one because when your throat starts to close your body goes into this panic mode. You can’t help it, at least I can’t. So just that sensation of impending doom and panic is enough to wear me out. And then the physical toll it takes on me too is a lot so I am worn out. I am not feeling well from that. And in addition to the attack, I also subluxed my left hip last night, which is a symptom of my Ehlers-Danlos Syndrome. Subluxing is partially dislocating. My joints are very hypermobile from my EDS. So, today I’m not doing great. I’m dealing with pain, extreme fatigue, I’m exhausted, I’m just- I’m not doing well. *sighs* Today is a mandatory rest day and I’m going to be okay with that because this is my reality with chronic illness, and I’m going to give my body what it needs. I just woke up from taking a nap on the couch and *sighs* it’s just one of those days where no matter how much I rest, I feel like I’m never gonna get my energy back. It’s this relentless fatigue, and drained, exhausted feeling, but I’m doing the best I can and I’m listening to my body. I’m giving it what it needs. I just- I know eventually things will turn around. It’s just right now at this moment it can be a little frustrating. Having Harlow here always helps. She’s so sweet. Not only does Harlow help me with physical limitation s and has various tasks to help mitigate my disabilities, but just having her unconditional love and support is a huge help on days like today and every day honestly. You’re a good girl. I’ve taken another nap, done my usual stuff, taken pills, flushed my feeding tube, put more nutrition in the feeding bag, just relaxing. I know some people may think it’s nice to lay around the house all day and relax, and that is nice, a lot of people enjoy doing that every now and then, But the difference between what I have to do today and just taking a day to relax is that I don’t have a choice. Because of my chronic illnesses, because I went through an angiodema attack, which is extremely hard on my body, there is nothing else I can do today, except rest. And it’s that lack of options, that lack of control that makes chronic illness so frustrating at times. There are so many things I would rather do than take all these rest days- I have to because my body is constantly fighting against me. Instead of resting and allowing my body to recuperate from my chronic illnesses, I would rather be going to college full time. I’d rather be out working or just doing something else, but I can’t and my chronic illnesses are so unpredictable, we never know when I’m gonna need a full rest day. We never know when I’m gonna end up in the hospital. We don’t know all these things and it can be really frustrating. The lack of control can be so discouraging. Today is a hard day. Last night was hard too and it is just- it’s difficult. Um, but on days like today, I don’t push the frustration away. If I need to be frustrated, I let myself be frustrated. But I know tomorrow is a new day. I’m doing exactly what I need to do to recover and I’ll do what I can to keep moving forward. I’m just here in the kitchen. I’ve got my feeding tube stuff out. I am about to do another flush of water through my feeding tube to keep it working. Ugh I mustered up all the energy I could to make myself some Velveta mac and cheese and then I went to take a bite and my body was like, “Nope, Mmm, not having it” I got extremely nauseous which is kind of unusual for me because when I wake up and I’m having an okay GI day, meaning I wake up without severe nausea and vomiting, I can usually tolerate Velveta pretty well But I guess today is not one of those days. Chronic illnesses change from hour to hour, day to day. So anyways, not having the mac and cheese I made. I’m gonna try some dry cereal. And I should be able to tolerate that better but first I’m gonna flush my tube with some water. So I managed a few bites of cereal and that’s probably all I’m gonna eat today. I don’t wanna risk eating too much and giving myself the symptoms of stomach pain, nausea, and vomiting. Instead I can rely on my handy feeding tube to give me the nutrition I need. And I’m really thankful for tools like my feeding tube that help me stay functioning and give me the best quality of life possible despite my chronic illnesses. And even on days like today that are really difficult, I’m still thankful for things. Thankful for tools that help me function, thankful for my service pup. *kiss noise* I’m thankful for supportive people in my life like Judd. I’m thankful for y’all who continuously offer kind words, encouragement, and support, and let me know that sharing my story is making a difference. Harlow, “sit”. “Lay down”. You’re-you’re taking up a lot of room. I’m- I’m trying to talk to the people now.(laughs) Yes but you’re very cute. *kiss noise* So, I am thankful for things, but days like today still come, and they are frustrating because like I said when you battle a chronic illness, that lack of control is gonna be there and it gets frustrating. I have no control over when an angiodema attack will happen, when my POTS is gonna flare, when I’m gonna be feeling good, or when I’m gonna be feeling bad. It’s always a gamble at how my body is gonna be functioning when I wake up in the morning and from hour to hour. It can change so much because chronic illness is so unpredictable, but I just do the best I can within my circumstances. I do what I can to keep moving forward, and days like today, I give my body what it needs, and I rest to let it recuperate. But, The frustration will be there and that’s okay. That’s part of life with chronic illness, but I do my best to focus on the positives and keep moving forward. Judd is working today. His twelve hour shift ends at ten p.m. Tomorrow he’s off and Thursday he’s off. Thursday we have a follow up appointment with my GI doctor for my feeding tube. And tomorrow we’ve decided that he and I will try a new place for lunch. I like to set up things that don’t take too much energy for me, but it’s something to look forward to after hard days like today to kind of lifts my spirits, so that’s why we set up this lunch. And, hopefully I feel well enough to do so. I just, like I said, I’m gonna take it easy. I’m not gonna put myself down too much because my chronic illnesses already do that enough. I mean, it’s not my fault that I’m not feeling well, and I have to acknowledge that and know that the unpredictability and lack of control is just part of chronic illness. And with that, I will say Goodnight. I’m going to bed early again and I will say thank you so much for walking this journey with us and for joining me on my adventure. *outro music*

100 thoughts on “Feeling Out of Control with Chronic Illness (6/20/17)

  1. Rest up and hope tomorrow is a better day for you, I liked how at the beginning Harlow was nodding off on you …. sooo cute, How amazing that she can sense things are not quite right with you, she is truly incredible and so darn cute too. Well time for my head to hit the pillow too …. Nite x Hugs from Australia…..

  2. Thank you for explaining rest days! I have several diseases and conditions that act a bit like yours. People don't understand when I can't do anything. Take care of yourself always!

  3. Starting to watch the vlogs in order from when I dropped out on May 28. Just want to check in and say congratulations because you apparently got married and stuff? As if chronic illness doesn't already make me feel out of touch with the world! πŸ™‚

  4. So sorry you're having such a rough time, I wonder if a review of potential food and environmental triggers would make a big difference. It's been a huge change for me and I'm still working on it with my living environment — e.g., floors are better than wall to wall carpeting. Diet-wise, I avoid processed foods, sugar, dairy and grains, although I seem to tolerate limited amounts of rice or ride noodle. I was taking cromolyn sodium liquid ampules in water 20 minutes before meals and at bedtime (4x/day), starting slowly (1/2 dose 1x/day) and increasing gradually. It really helped. I had to switch to quercetin dihydrate because the co-pay for the cromolyn sodium liquid ampules was insanely high. I also take Pepcid Complete 2x/day, Zyrtec 1-3x/day and Singulair/Montelukast 1x/day. Also, I began eating only low FODmap foods. Basically, treating SIBO and SIFO with oregano oil + treating the MCAS in my digestive system have reduced inflammation and promoted motility. I also take low dose naltrexone as a prokinetic and for pain. I'm now eating at least 1/2 a full meal a day + snacks of allowed foods. The most difficult part has been adapting to the diet. But, now, making almond milk with a Vitamix or NutriBullet and freezing it so it doesn't go bad (no preservatives) and making cashew yogurt + cooking with only natural ingredients has become habit. It is, unfortunately, more expensive. My gastroenterologist told me to work with a functional medicine doctor and nutritionist. The nutritionist I use specializes in functional GI disorders in EDS patients and MCAS. If you want her name, let me know.

  5. Just remember health isn't equal to happiness. I've been told the opposite tons, but when you're in the situation, it's essential to realize health < happiness. I hope soon that your body will recuperate. (By the way: I love all the silly Harlow angles..so cute!)

  6. Despite repeating yourself, you articulated those feelings and frustrations very well. I often struggle with feeling like it's my fault when I have a high fatigue or pain day, but you're totally right! Sometimes hard health days will happen even if you do every single thing right. Now just need to repeat and repeat to myself until it sinks into my heart! Thanks for sharing your life πŸ™‚

  7. This is one of your best vlogs! When people get frustrated with me because of my illnesses I am going to have them watch this. You put all of my thoughts and feelings together so eloquently.

  8. Hi Jaquie! You are so good at talking about your chronic ilnesses! Your speech is clear and I learn from it a lot, thank you!πŸ’—

  9. πŸ’•πŸ‘I totally understand where you are coming from. I also have Ehlers-Danlos on top of mild Gastroparesis.

  10. Remember too a couple of things-
    You had a hugely productive day yesterday (well two days ago now) doing all that laundry and cooking and taking dinner to Judd, if I remember correctly. Not to mention what we didn't see. Your body may have good reason to feel tired today. Also diphenhydramine leaves you feeling wiped out for a while afterward. On the bright side, you discovered a new skill that you didn't realize Hippo had. Lastly, as Mary Frey says- You are a star!

  11. I have mast cell activation too ❀️ I struggle with not being in control and its so incredibly frustrating.

  12. How do you know its angiodema vrs a mast cell issue? Have you thought about different options for treatment of mast cell? Maybe you could research gleevic

  13. Rather than having a skin prick test for allergies, have they tried a RAST blood test? My daughter has TONS of food allergies and she has very dermatagraphic skin and when they try to do too many skin tests for allergens, everything looks like it is positive when it actually may not be. The blood test seems to be pretty accurate. Just a thought because I know back in December when you had all those skin prick tests is when you started with the angioedema attacks. My daughter also has POTS and takes florinef (fludrocortisone) to help with her symptoms. She has been on it for about 9 months and she feels a lot better. Still symptomatic, but not as severely as she was, thankfully.

  14. thank you so much for sharing your story every day. I'm currently struggling with an illness that my doctor cannot seem to figure out. I've been to 3 different states for specialist to find something out. and on the 24th I'm going to Tampa Florida to see if that specialist can give me some sort of answer. in glad you share your story with the world because it makes me feel like I'm not alone.

  15. i have chronic depression and ocd and i have very intense panic attacks and i know it's not the same as physical chronic illnesses but the frustration and being out of control of how they make me feel is really relatable and i hope you have better days Jaquie πŸ’œ

  16. Jaquie you are an amazing young lady and you have nothing to apologise for. Your story was so engrossing that I didn't notice any repetition. Harlow is a life saver as you are aware. You are so lucky to have found her and you deserve nothing less. God bless you. Feel better

  17. I always listen to Jaq, but I can't help but to look at how stinking cute Harlow is she just wants to be pet I love her and her wonderful owners

  18. Lack of control is one of the most frustrating things for me…I feel like i have NO control over anything in my life most days (I too have Gastroparesis and also severe asthma along with other disorders) but I just want to thank you so much, for sharing your story and I really admire your outlook and positive vibes that you give us all. <3 so just..thank you

  19. Thank you for sharing your journey with us. I see that Harlow is right by your side. She is tuned in to you and knows when something is wrong. My service animal will be on top of me during a flare. When she needs to tend to herself (eat drink etc) she will tell another animal in the house to watch over me. It's so sweet. I too go hour by hour or moment to moment when the day is not going according to plan, but that's the life of a warrior.

  20. ((gentle hugs)) Hope you're better today and enjoying your lunch date! I know chronic illness😞 I'm a zebra too. I'm about to watch your training playlistπŸ˜‰ My 4 month old lab is showing great signs of moving forward now.. as long as my head doesn't explode firstπŸ‘πŸ€ž

  21. I have Crohn's disease and just that in itself makes life so challenging. I can't imagine living everyday with more chronic Illnesses. You're such an inspiration! Keep on smiling!

  22. I really needed this today. Almost passed out in heat (thanks POTs) while heading to my chiropractor appointment for my pinched nerve (thanks connective tissue disorder), and had to cancel the appointment :/. I felt super out of control and awful. Thanks for being so positive and bringing these problems to light ❀

  23. Ugh. That feeling that you know you should eat but you also know there's a whole new set of awful things you have to deal with when you do. I so get it. And taking it hour by hour. I had a couple of good hours at like 3 am. I managed to get my son's room decluttered a bit before my body was like "nope". I made a deal with myself that I'll do what I can when my body's ready, no matter the time of day, and try not to beat myself up when I just can't.

  24. I used to get massages for my EDS and the woman would always be like 'i don't know how you just sit at home all day and do nothing! I'd be so bored.' Like yeah I don't have a choice so shut up lol.

  25. Jaquie, you have taught me and so many others so much about the life of a chronic illness warrior. I'm sorry yesterday was rough and I really hope today was better ❀️

  26. hi sweet I'm also very ill with a lot of things just remember god iswith you walkin with you guiding you and myself also I have a port and I have severer lung falure eperlepsy and soo many other things I don't smoke or drink it is just not fare god bless xx

  27. I just discovered your channel/subbed last night! You're such a strong woman and I really admire that you can smile through everything that you're going through. I really wish you all the best and you'll be in my prayers❀❀

  28. Sorry you had a rough day! We all get them in different ways. I have fibromyalgia and we are trying to move, we as in my husband 3 kids and I, and it has been tough. I have been doing my best to power through it, but I can feel a flare coming… I am just praying it waits until after we get moved this weekend to kick my behind. I will be moving into my grandparents house, which is right next door to my parents. That will be nice for flare days, I can send my kids out the back door to see what grandma is up to that day and not have to worry about anyone πŸ™‚ Keep doing you girl! You are one strong woman and I enjoy getting to watch you, Judd and Hippo! Thanks for sharing your life with us πŸ™‚

  29. jaquie,hang in there i too have my up,s and down,s i have degenerative disk disease and sacroilliac joint disease,it,s now affecting my bladder,i also have chronic pain,by the time i get home from doctors appointments and going to the store and then getting home and cooking dinner i,m totally wore out,it takes everything out of me.my dog makes everything better even though he,s not a service dog,he seems to know when i,m not feeling good.just take everything slow,and eventually it will get better.

  30. Hey Jaquie also suffering from multiple sources of chronic degenerative illnesses and gastroproesis. I see three different specialist one being a homeopathic doctor. Raw or even cooked or steamed veg is rarsh on your tummy its hard as hell to digest and break down. Meats stay away from red meat!!!! Switch to turkey if your still going to intake solid food orally chicken is okay to but no skin no bone. And NO fried food and NO take OUT food!!!!!!! Avoid GMO's!!!! Do your best to stick with organic grain fed gmo free. Free range food products. STAY AWAY FROM CORN!!!!!!!!!!!!!!! AND PORK AND 98% FISH BECAUSE OF MERCURY AND OF THE OIL SPILLS AND PLUS MOST FISH NOW COME FROME HATCHERIES WHICH IS VERY BAD!!! BELL PEPPERS ARE HARSH ON THE GI TOO. SQUASH IS GOOD. potatoes are okay in small amounts cause its a carb. So is rice. Best advice check out your baby food aisle the number 2 jars those ingredients is basically what you want to stick with. Amy's organic gluten free food is awesome. So is Annie's organic is also good too. Cereal is harsh on the tummy. Oatmeal or cream of wheat or along those lines is better organic/gluten free either or or both. I suggest getting tested for food allergies along with celiac, ibs, crohns, ECT….oh I do have medical background in case your wondering. As far as your attacks your living close to not so clean water. Plus the humidity. You always constantly want change your filters to your air conditioning and your roomba (sorry my spelling is awful) there is filters on everything you will be shocked!!!! When dusting, dust first with a wet cloth than a dry cloth this includes your walls…..everything!!!!!! Your gonna need Judd's help! Make sure your using a detergent that is dye free and perfume free as well as fabric softener too dye free and perfume free. Stop using plastic containers that contains pbh. I switch to all glass and mason jars. Be extremely careful with nuts and seeds if you eat them cause they are cross contamination issues with other ingredients. Shampoo, conditioner, soaps, toothpaste ECT id switch to organic for toothpaste id go to Toms brand. Lotions be very careful with those I have mine specifically made for me and my sun block because am hypersensitive to heat and the sun. Instead of trying to eat solid food by mouth even with the feeding tube try mashed up food for at least 5-7 days or soft foods as I described above. Start taking kefir about a mouthful or an oz or two a day plus a probiotic and a prebiatic everyday. Stay away from harsh smelling odors cleaning products, perfume, soaps ECT……best ya can. Greek yogurt like chobani is awesome! Follow these steps and you'll be shocked….mucho love!!!!!!! Hugs and kisses 😊 oh and there is a special type of peanut butter and jelly and bread and even butter called earth balance. Love, light. God bless

  31. Hey, I'm a pretty new subscriber so I don't know if you ever spoke about something like this before but, if you're having trouble going to college, perhaps you could look into options for online school?
    I did online school for awhile while I was in highschool and the options for classes were pretty amazing, I was able to take a 3D animation course which I never would have been able to take otherwise.
    I'm sorry if you've already spoken about this I just thought I should mention it in case you hadn't considered the possibility.
    I hope your symptoms let up a bit!

  32. i hope are feeling better soon. hi Harlow look after your mummy.πŸ–’πŸ’“β€πŸ’–

  33. So glad I found your Vlogs! Thank you for being so honest about living with chronic illnesses. I've got a Service dog, also. I've got several mental illnesses plus difficult-to-control diabetes and fatty liver. Watching you charge through your problems strong and positive despite even your worst days gives me the courage to handle my own illnesses. You go Girl and give your other partners-in-crime a hug πŸ™‚

  34. I really needed this kind of vlog today. I have osteogenesis imperfecta which causes brittle bones. I'm trying to become a lifeguard since it OI doesn't affect me that severely but it seems lately because of my lifeguard training I'm getting something that feels like arthritis in my knee. And it's just so frustrating! I want to be a lifeguard so bad but this symptom gives my such severe pain I don't know if it's worth it. It's hard to accept this lack of control since my fractures are usually predictable, and I am just really feeling down today. But I know tomorrow will be a new day, a new adventure.

  35. Hi Jackie and the family I just wanted u to know I'm sending prayers to u and your family mostly you love uπŸ’“πŸ’“πŸ’“πŸ’“πŸ˜˜πŸ˜˜πŸ˜˜πŸ˜˜πŸ˜˜πŸ˜˜

  36. Bless you. I totally understand the frustration at the lack of control. I have IBS, and my attacks are hellish.

    Just as a little tip that may help you: veleeta wrecks my stomach, and organic food seems to work better with my body than the normal stuff. I'm not sure if either of these things will help, but maybe you should give it a try?

    I hope you feel better soon!

  37. I watch one vlog, and I'm in love with your strength and respect. You earned a subscriber, keep up the AMAZING work Jaquie..!

  38. Hi jaquie i dont know if youll see this but i discovered you about 2 or 3 months ago and ever since ive looked forward to your videos everyday and theyre always the first thing i watch when i get up in the morning. Im so glad you and judd got married and i love you guys so much

  39. Feel better Jaquie, also do you have a recipe link to your honey mustard chicken you made in a vlog a while ago.

  40. You're such an idol ❀️ and your dog is the cutest thing in the world πŸ˜πŸ’žπŸ˜Š

  41. Thank you very much. Seeing you losing energy from standing up and trying to feed yourself. … that was an incredible experience. Be blessed. β™‘ive

  42. You are so pretty 😍😍 I'm new viewer her , hi πŸ‘‹πŸΌ ☺️ I love your videos πŸ‘ŒπŸ»πŸ‘ŒπŸ»

  43. I know the feeling when you don't have any energy and what to do stuff. My best friend tells me I'm lucky because I'm not much at school but I'm almost always at home in my bed because I don't have any energy. I hope you will have enough energy to do stuff you want in the future.

  44. Thank you for doing these videos! I thought I was alone. Everytime I get really down or cry, I put one of your videos on. You have saved my sanity by sharing your experience. I finally feel I am not alone. Please keep making them. You give me support, and your explanations allow me to help my Husband understand the out of control complications of chronic illness. At one point(LONG AGO) I considered suicide. Support groups failed. You are my saving grace. I want to live, and gain quility of life. I do have one self-serving question, where did you get your mask? I have a severe auto immune system, and I REALLY need on. I have found some, but non have that 'black button' (forgive my lack of ability to describe it better). If you can give me a name, website, or link, I would be even more grateful (if that is possible). Thank you for all you do, feeling like I am not alone with these challenges.

  45. I totally agree. I feel so out of control with my symptoms, and living life with chronic illness is quite frustrating. <3 sending my love to you Jaquie.

  46. Sorry you had the attack; and thank you for sharing your journey with us: real, day by day, good, bad, and in between. Sending strength your way.

  47. Gosh, what a rough day! It is so easy just to be overwhelmed by one or two health problems. I can't imagine coping with all you have going on. Glad you are being kind to yourself today. I so hope tomorrow is better for you and that you can enjoy your adventure with Judd!

  48. Awe I completely understand. I work full time and battle chronic illnesses. Rest days for me usually mean forgoing house work, and errands. Really wish I could have more energy to do what I want to do too. Take your rest, and pray for better days love. Feel better πŸ’œπŸ’œπŸ’œπŸ˜Š

  49. I commend you so much on giving the world an opportunity to see an accurate, real account of chronic illness. I can't even image the anxiety these attacks must make you feel. Sending you love, Jaquie! I'm officially subscribed!

  50. Hello, Jaquie, I want you to know what an impact you have made on my life. I am a 60 year old woman with multiple chronic illnesses and have suffered with deep dark depression and uncontrollable anxiety since being forced onto disability 5 yrs ago. It has been so bad…the feelings of uselessness and hopelessness I have experienced….that I have suffered numerous suicidal thoughts. I just "found" you a week or two ago, and you have given me new hope. I hope to be as positive as you. I hope to one day be able to make a positive impact on others, the way you have done for me. Thank you so so much. Your smile every day brings me peace and happiness. Thank you so so much. And thank you to Judd too. He always makes me laugh when he sneaks himself onto your video when you are resting. LOL, you two will have a wonderful life together, being as supportive as you are to each other. And God bless sweet Harlow and I pray He keeps Harlow healthy and grants her longevity. God bless your awesome Family. Thank you so so much for making such a positive impact on my life. <3

  51. I have chronic daily intractable migraines. which means I have migraines, everyday, all the time and meds rarely help. I do have a cephaly which is a little device that shocks my brain for 20 mins a day. And that helps. my illness is nothing like yours, but is chronic and I'm only 18 and in my senior year of high school. my migraines have made me drop my GPA so low, I couldnt get into my dream college. chronic illness is terrible. I am considering getting a service dog for my anxiety and depression. since I have pain, I've developed really bad anxiety. I was wondering if you have anxiety and how your dog helps? you are very strong!!

  52. Your blogs are so inspiring seeing you stay positive no matter what your going through helps me face some of my dark days!

  53. Yes! It is hard to feel like you have no control like this. It is inspiring that you have faith and still have gratitude. I try to do the same, but on the worst days it is hard. Thank you for spreading awareness so well! I love how Harlow watches you with concern. She is such a good pup ❀️ Hang in there! Praying for you.

  54. totally get where your coming from i have MS and dysautomia as well heat also really affects me as well. and people REALLY don't get it! so glad you have harlow and Judd! they are really the best support for you! keep up the fight you got this Jaquie!!

  55. I too have eds, POTS, and gastroparisis. Plus some other fun stuff to mix it up a bit. Your Vlog has inspired me to do my own vlog and would love it if you checked it out once it's ready.

    I know exactly what it means when you say you have a lack of control of your body and never being certain what's going to happen next. I found this quote and think you might like it.

    "When nothing is certain anything is possible."

  56. Ahhhh, it's so obvious that the love Harlow has for you oozes out of her. She can obviously tell your struggling even more than usual in this vlog – you can see it in her eyes. It's like she really doesn't want to leave you alone. A loyal companion indeed. Hope easier days come soon for you, although I realise that like me the days of feeling 100% are long gone. I wish Judd could be with you more often. I'm so lucky that I have my husband with me all the time, unless I am in respite care allowing him to have a break. In the U.K. we are so so fortunate to have a scheme that allows him to be paid as my full time carer. I don't know how we would of survived otherwise. Hugs.

  57. I completely agree! I always find myself feeling guilty for taking rest days when I really need them. I'd much rather go do something I enjoy than lay around the house but sometimes you just have to.

  58. keep going Jacquie!!! , there will be a good day ahead, you just need to be patient. stay positive but leave yourself get frustrated when you need to

  59. Jaquie, do you have any good ways to keep from beating yourself up when you have to take complete rest days, or when resting in response to severe fatigue? I keep going through this cycle of guilt and anxiety, which makes the resting less effective, which means more time down.

  60. I’ve been having digestive problems lately. Not something I’ve grown up with, but disturbing. Nausea, vomiting and dehydration have put in and out of hospital in the past two months. I was diagnosed with type 2 diabetes this February. I’ve had Lupus since I was 8. Diagnosed with arthritis at 22 and fibromyalgia at 43. My health seams to be declining since I’m aging. I’m 49 now. I’m sorry if that’s too much info 😊. I don’t get to talk much about myself at all, thank you for listening. I love your channel🌹

  61. I am chronically disabled too and have never heard of anybody having more than me, not that I'm excited about it or anything….My family tells me that I have my own pharmacy. I'm not sure how I feel when they say that. It is nice that you stay so positive and I know how you feel with not knowing how you feel day to day. I feel so bad that I can't do very much housework. 😞😞😞

  62. Was you dog trained initially or did you train your dog ? I just got a new dog and wondering if I can train him? He’s a shepherd so very smart dog.

  63. My daughter has always had a phobia of fruit, and is about to get diagnosed with EDS. I already have a diagnosis of EDS with POTS and other stuff. Do you have more info about your issues with fruit that you had in a different video?

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