Look at this new migraine medication goes in my nose *laughs* We’re going on an adventure Ah you’ve got freezing cold hands *laughs Hi, Harlow. Say good morning to the people Say “good Friday morning everyone” Nope, you resting after a nice breakfast Hi, y’all Good morning. Really happy to say my pain is more manageable today Still, worse than it usually is but not as bad as yesterday That is a little victory I’m going to choose to celebrate What happens is basically my joints are really hyper mobile from my Ehlers-Danlos syndrome and when my joints act up I know my muscular pain is going to follow soon after because my muscles become very over stretched from the joints moving far past where they should and that causes a lot of pain So it’s kind of like a vicious cycle, and I mean, to treat it. I really just rest, massage, heat pad over-the-counter painkillers which really don’t work so I’d rather not take them if they don’t even work and I just wait for the pain flare to pass and it looks like it’s on its way out. So I’m really thankful for that. Look what I just got the delivery of my medication this is the new nasal spray migraine abortive If y’all remember, I recently went to my neurologist and my migraines and headaches are becoming more frequent and that’s because with my increasingly worsening Gi symptoms I am having malabsorption issues so when I take my oral preventative pill and when I have a migraine and I take my oral abortive pill. They don’t work because my body can’t absorb it well But now with a nasal spray from my migraine abortive It should work perfectly fine because there’s no malabsorption issue in my nose, so let’s open the box It’s in a tiny little cooler. How cute *cringing sounds That’s a terrible noise. I don’t think anyone likes that noise Okay. There’s ice packs because this medication needs to be refrigerated Here it is. It’s called Spritz And it’s basically Ketorolac which is Toradol, my abortive which I take when a migraine hits, in a nasal spray Look at this view migraine medication and goes in my nose So, the whole point of it going in my nose is great because then we don’t have to worry about the malabsorption issue And my malabsorption is actually making a lot of my oral medications, all my oral medications, less effective and when I get on Tricare, which should happen sometime this month they cover compounding medication unlike my current insurance plan and if it’s compounded medication that means I can take my oral pills and put them into liquid form and then we can safely put it through my feeding tube which would be great because I have malabsorbtion through my whole digestive tract but the main problem area is my stomach and my feeding tube bypasses my stomach and goes to my small intestine So I’ll have better absorption if I have liquid meds that we can put through my feeding tube rather than having to take them orally but we don’t have to worry about the Toradol at all because putting it through my nose, I don’t have to worry about the malabsorption issue and the vials have to stay in the fridge, but once you open them, it can stay out of the fridge They only last 24 hours after you open them and I can put one spray in each nostril every six to eight hours to abort a migraine I have enough for five days worth, so five vials in here But obviously if one vial aborts the migraine, I don’t have to use the rest until I need them next which is awesome So just put the Sprix in my medical area here in the fridge with my infusion bags All the more reasons that Judd and I keep saying we’re going to get a mini fridge for our guest room where we really keep all my medical supplies Um, and This is leftover IVIg they told me to keep from my first infusion which, as y’all may recall, did not go so well Let me give you an IVIg update We are still definitely pursuing IVIg, but if you remember with my first infusion I had a really bad reaction So we want to do it in a safer setting in a hospital or infusion center And my insurance is giving us issues cause they’re like “we approved it for home health” “Why do you need it in an infusion center?” And we’ve been trying really hard to explain, but they’re not working with us But my doctor’s office is kind of like “let’s just wait till you get on Tricare because you’re going to leave this insurance soon anyways” and Tricare, they have said they’ve worked with them a lot, the plan on going on and they’re super easy to work with, which of course we won’t know for sure till I’m on it but I’ve already been speaking to representatives with Tricare about my treatments and all that and they’ve been so helpful, so I’m really optimistic about how it’ll go, but right now we’re like holding on the IVIg cause, my doctor’s office, they don’t see a point of fighting so hard with my current insurance plan when I’m gonna be leaving that plan really soon and going on Tricare So they’d rather just wait till I get on Tricare and I agree Another delivery of medication, but I know what this is. This is my IV benadryl they just sent me some more Good morning, mom. How you doing? I’m here to prepare my, um, breakfast You know, my coffee, nobody drinks coffee in this house and the first day I was going to have a fit. No coffee. I cannot move We don’t even have a coffee maker Yeah, so I had to go buy instant coffee, but some coffee is better than none, no coffee the IV Benadryl is to abort my Angioedema attacks and if you’re wondering what happened to the Angioedema attacks because they’re not happening as much which is a huge blessing by the way. There’s a vlog that talks about it um, I’ll link it up in one of these corners. I never know which corner it is, anyway Got lots of IV Benadryl This should definitely hold me over for a while Stopped home for lunch and had interrupted Jaq in the middle of her Skype session, that’s Jamie -Skyping with Jamie
-Everyone say hi to Jamie. Jamie say hi to everybody -We’re having a good time
-and now I got to go back to work -Have fun, babe!
-I will I had so much fun skyping with Jamie She is one of my patrons and now a really good friend And if you want to learn more about what a patron is there’s a link to my Patreon page in the description The main goal of that page is to help me afford the ability to pay professional companies to put subtitles on my vlogs and videos by people making monthly contributions But please don’t feel pressured to contribute. It’s totally optional My mom and I made it out of the house She has her coffee in her so hopefully that means she’s functional Are you functional? -Yes I am, but I need another one.
-Oh my gosh We just stopped at my pharmacy got me some medicine Now we’re stopping at the bank and we just gotta get a few errands done Finished up the bank now we’re going to pick up my second altered feeding tube backpack This backpack is made by Vibedration and I just had it altered to accommodate my feeding tube There’s a little clip to hold my feeding tube bag, a clasp inside to hold extra feeding tube tubing, and of course a place for it to run out here to connect right up to my feeding tube now we’re going to my local seamstress to pick up the second bag It looks exactly like this with a different pattern that she altered for me. I’m super excited Tadaa, we got my bag! She altered it just like the other one except she put a stronger clasp at the top to hold my feed bag. So she said I can bring in this one next week sometime and she’ll change the current clasp for the stronger one real quick for me And there’s a link to where you can get this backpack online in the description Now we made it to Publix. Judd’s birthday is tomorrow, so I’m picking up the cake for him and we have the walker because my pain is still higher than usual I need it for longer walking distances like around a supermarket I’ve been okay at home walking from room to room, short distances, but like I said, longer distances still need to use the walker But just another tool to help me with my chronic illnesses So they only had one chocolate cake and it had pink flowers on it which I was totally down for but I don’t know if that’s really Judd’s style So they took the flowers off and put this on it, and I think it looks awesome Operation “Get Judd’s Birthday Cake” was a success. Thank you for getting that for him, Mom My mom got it for Judd as a birthday present Yes, cause he’s such a good son-in-law son-in-law gosh *laughs* It used to be my daughter’s fiance or boyfriend now son-in-law Anyways I really appreciate Publix taking the flowers off and making it more of a birthday cake they didn’t have to do that, but that was really sweet of them and Judd’s birthday is tomorrow, July 8th. He’s turning 23 He doesn’t like to celebrate his birthday because he doesn’t like being the center of attention But last time we went to Orlando, we had a family dinner to kind of commemorate his birthday But even though he doesn’t like celebrating his birthday he likes cake so since he has to work tomorrow, which he does not mind that at all I’m bringing a cake to the sheriff’s department, so we can have a little fun with that oh and I have two Harlow stories for y’all that happened while we were in the supermarket One, a huge dog came in and it was not vested and service dogs don’t have to be vested whatsoever And it was a Saint Bernard The dog behaves beautifully. Harlow saw the dog. The other dog saw Harlow The other handler kept walking. I told Harlow “leave it” and “watch me.” She did. It was a beautiful encounter It was awesome. Both dogs behaved great, and we just went about our shopping and then *laughs* later in our shopping, Harlow looked at me and let out this desperate whine and she never does that unless she really needs to use the bathroom so I was like “okay!” “Oh gosh”, so my Mom took Harlow out and unfortunately she had the runs And this morning her stool was perfect And she’s behaving like her normal self. When her personality changes and she acts lethargic and stuff like that That’s when I get worried, but sometimes service dogs get sick too And I’m not overly concerned because she might just have one bout of diarrhea that’s it but I took her to the car right after that because I’m not going to make her work if she might not be feeling well, but she’s acting like her normal self And I’ll just give her the rest of the day off and wait and see how she feels after eating dinner tonight and what her next stool looks like What do you have? Oh my goodness. Do you got a new chew toy? That’s so exciting. Oh See, she’s acting like herself. It’s when her personality changes, that she becomes lethargic then I would rush her to the vet But I’m just going to see how she does. I let her out and she didn’t have any runs or anything so Sorry to keep telling you all about my dogs poop *laughs* Well running all those errands has increased my pain, so I’m just resting in bed And I also just submitted an order for professional subtitles to be made for two of my videos. My “All About Harlow” video and “All About My Infusions” I am so excited Thank you so much to my patrons who are making this all possible I think that accessibility is so important and my patrons are helping me make my channel more accessible So it means a lot to me and at the same time if you can’t become a patron Don’t worry about it because I know it’s not feasible for everybody and some people just don’t want to do it and that’s totally fine. Know that I appreciate everybody’s support patron or not, I appreciate y’all coming along with me on my adventures and helping me spread awareness and just the support y’all offer me means so much to my family and I also, the thing about the subtitles They’re not going to suddenly appear all at once on all of my videos because it does cost money to get the professional subtitles but I’m doing it as often as possible, and I’m just thrilled that my channel is becoming more and more accessible Hippo Here’s a happy dog So we ordered another walker for upstairs Because Judd’s been bringing this one up and downstairs for me. So we’re going to have one for downstairs and one for upstairs It’ll be here next week Unfortunately, my pain gotten quite a bit worse. I think I pushed myself too much going out to run those errands today, but I’ve got the heating pad under here and hooked up to my feeding tube Just doing the best I can, and that’s it for today Thank you for joining us on our adventure