Holidays Are Different Due to Chronic Illness (7/4/17)


Happy fourth of july all the celebrating can look so different from one person to the next especially when Chronic illness is involved were going on an adventure, ah, you got freezing cold hands Good Tuesday morning everyone happy fourth happy birthday, America. I am wearing red well Kind of Burgundy to celebrate. I’m also wearing new leggings that somebody gifted me. I love them So thank you I would love to know what y’all are doing for the 4th of july if you’re doing anything Or you could be like me just hanging around the house. I’m not a fan of fireworks because of my sensory processing disorder and Harlow doesn’t mind fireworks at all, but she’s perfectly happy to just chill here with me plus judd is working We are kind of celebrating because tomorrow I’m going to make a special fourth of july dinner for us, but that’s about it and I just changed my port needle because the dressing was starting to come up as you can see all of the Trash from that and I’m about to hook up to my infusion. Just going to take it easy today Hooked up to my infusion played the Tetris game together everything to fit in here And I decided to do my saline infusion bag first usually I do my banana bag first It doesn’t matter the order But I don’t feel like mixing my banana bag right now because I just change my port needle so saline it is alright So this morning. I did my breathing treatment Did my pills took care of my feeding tube to change my port needle hooked up to my infusion? Check my blood sugar, and it’s a beautiful 89 now. I can do my morning exercises as I mentioned in a previous vlog exercising has the potential to Slightly improve my chronic illnesses no matter how much I workout it will not drastically improve my conditions But I want to take advantage of any little benefit at the same time my chronic illnesses make it Extremely difficult to work out whether it be from Chronic pain dizziness fatigue Fainting all these symptoms make it hard to work out and working out also leaves me with negative repercussions But I work out because one there’s a potential for that slight benefit and two I enjoy working out It makes me happy and I have to think of my emotional well-being As well as my physical well-being so I just do my best to find good balance Are you my workout partner? Right now that’s all my body can handle laying down exercises that are low impact and not vigorous But maybe as I do them more and more I can handle more and more But right now my body just just from just that I am exhausted and dizzy and in pain You gotta understand from the chronic malnourishment. I went through before my feeding Tube I lost a lot of strength, and they told me it’ll take a while to build that up But my pots also makes me very exercise intolerant my other chronic illnesses. It’s just It’s not easy There’s a lot working against me to exercise But I think it’s worth it. I know Like I’m proud of myself for doing that And now I’m going to go rest. I have rested and recovered as much as I can from my workout I’m getting ready to do a few errands Just got to go to the pharmacy and I want to stop at the dollar store to see if I can find a cute Fourth of July Headband Harlow to take a photo, and I just dusted upstairs and I’m about to run the Roomba oh Well the pharmacy… Harlow you’re ear is fliped The pharmacy was closed because it’s fourth or July, but that’s fine because the medicine I need I’m not out of yet anyways, but the dollar store is open So let’s go in let’s find you a cute headband for a nice photo Harlow I Think they’re out of the fourth of july stuff this is where it was maybe I can have her hold like red white and There’s no blue flowers there. No purple. I mean, it’s not my work So they didn’t have any more headbands, but there was some leftover fourth of july stuff And I got some perfect items for an adorable photo, ready hippo, you ready to go home now Made it home harlow is sporting her new Patriotic Bandanna, So festive And I’ve got a streamer and some patriotic sunglasses for her to take a nice fourth of july photo But before I took the photo I made her put all her toys away, because they were all over the house And then I realized her new tire toy over there. She hasn’t quite figured out how to pick it up and put it away So I’m gonna help her do just that Harlow clean up You can do it. Oh, you got it. Good girl clean up… oh its such a big toy Clean up. Oh you did it good girl Her toy bin is kind of overflowing with all her new birthday toys, but that’s okay. I like to spoil her I Harlow your smile. Oh We got the most patriotic pup here. How adorable you looking Schnazzy harlow? Happy fourth of july y’all So I said I’d like to know what y’all are doing to celebrate the fourth, and that’s true I’m curious because celebrating can look so different from one person to the next especially when chronic illness is involved for example I don’t like fireworks because it doesn’t mesh well with my sensory processing disorder and I don’t feel physically well enough to go to a big cookout or Party and so I’m choosing to stay home and just enjoy the company of my loved ones, and that’s okay I’m doing what’s best for my body, and I’m doing what makes me happy some people with chronic illness may want to go out to a big event and People who aren’t chronically ill may want to stay home anyways, and that’s totally fine Do what makes you happy today? And whatever you’re doing to celebrate whatever that may look like for you I hope you find something. That’s enjoyable Thanks for doing the photos harlow that was so nice of you And you’re going to keep the bandana on because it’s festive and cute But as a reward for doing the photos we’re going to play fetch, go get it! And just realize I keep saying tell me what you’re doing today as in what you’re doing to celebrate the fourth And then I realize I upload my vlogs a day late, so I should be saying tell me what you did for the fourth But anyways, you don’t know what I mean, so right now I’m making one of my favorite snacks, so Cucumber is always really easy on my stomach because it’s just basically water I can digest as well It’s a safe food And I put some lemon juice some olive oil and salt in there and mix it up And it tastes super good so gonna have a snack now. Just mixed my banana bag and I’m going to press run Tada Infusion is running now I just got to play Tetris again to get everything to fit in the backpack Yikes, so just laying here watching TV and working on the vlog and I’m starting to get a headache So even though my neck pain isn’t any worse than it usually is and my neck pain isn’t triggering the headache this time Just happened, so closing the computer turning off the TV I’m going to put something over my eyes grab an ice pack for my head and Try to rest to hopefully prevent this headache from getting really bad. Well I’ve been resting and the headache isn’t better, but it hasn’t reached the Unmanageable level of pain, so I will take it and as I was lying here. I’ve been thinking about Well, I have had some of my chronic illnesses my entire life But it wasn’t until I hit puberty at age 15 That things kind of were thrown into overdrive And I became symptomatic enough to start getting my diagnosis and I talk more about this in my chronic illness video But I was thinking of my past fourth of July’s when I was able to be out in the heat I’d go swimming in lakes. I’d go to big barbecues and events with lots of people and Expend a lot of energy and I could eat basically whatever I wanted and as much as I wanted and I Can’t handle that anymore? It’s kind of like I’m grieving for my life before my chronic illnesses really hit hard And that’s okay sometimes. I need to do that for myself, but just because my life is different now Doesn’t mean that. It’s worse. Yes, we have to do more to accommodate You know for myself in my hull. Yes, I? can’t handle it much because I’m constantly battling multiple Chronic illnesses, but Although this is my new reality my new reality is still a good one. I still have a good life there’s still so many positive aspects in my life that make me happy and Yeah Holidays are different now because of my chronic illnesses, but I still enjoy them I’m enjoying my time here at home and enjoying my time with harlow and Just because it’s a new reality doesn’t mean it’s the worst one one thing that hasn’t changed as I’ve never been a fan of fireworks they have always bothered me, and that’s because of my sensory processing disorder, but Yeah, holidays are different now because of my chronic illnesses a lot of things are different now because of my chronic illnesses But I do the best I can within my circumstances. I look for the positives, and I still have a good life I am up and despite my head pain. I am cooking just making some stir-fry I am not cooking dinner because I am hungry, but I have a guest coming surprise guests and I’m so excited for them to come and I like to feed my guests of course that’s why I’m cooking and I just I can’t wait for them to arrive and It’s done. I’m not doing so great right now, but I was able to make this meal I deem it a chronic illness friendly meal There’s a link to the recipe in the description, and I just make it with rice in the rice cooker. So we’ve got dinner ready Just waiting for my special guest super excited. Look who’s here? my mom Are you happy harlow? What I mean, is that that big day my granddaughter? Mmm, yummy music, we’re all really happy you’re here mom Excited you’re here with us you make it a good fourth of july here today, Whereas the i was gonna say you’re as eccentric as fireworks, so Let’s see how the food is a little bit hot so I have to be careful Mm Mm Mm you like it? Judd likes this too – Delicious delicious very good or you just might be starving so… but it’s like really good It’s a nice day for fireworks. I wonder if people will be setting them off back here What do you think Harlow? you like fireworks. Don’t you?. You don’t really care about them. Cuz your a good dog And that was part of her service dog training? We went to Disney to expose her to fireworks? Oh, make sure she was a okay with them So you can still work even if there’s loud noises, and you’re so good at that. Oh I’m so happy to have my mom here. We’re just going to enjoy each other’s company and Enjoy the fireworks from inside. I mean we don’t have any to set off But I’m sure people will be setting them off on the it already uh-oh there’s people out there hmM cool Well, I will enjoy fireworks from inside and again. I hope whatever your Celebration looks like I hope you enjoy it Sometime and that is it for our day today. Thank you for joining us on our adventure