MY BRAIN IS TICKLING | SIDE EFFECTS OF IV ANTIBIOTICS ? (3.15.19)

MY BRAIN IS TICKLING | SIDE EFFECTS OF IV ANTIBIOTICS ? (3.15.19)


It’s just like this overall weird kind of sensation. A day or two ago I was sitting here in bed and I thought… my brain is tickling. ♬ Don’t you think we’re better together ♬ ♬ Oh Honey ♬ ♬ I think we are ♬ [Peter] Good morning. Guys, look. It’s…well, I don’t know if that qualifies as grass. It’s dead… [Peter] something, but… [Peter] well, our grass, our grass is very weedy, but… [Peter] there’s no snow around! Look at that. It’s like 60 degrees out here! Good morning guys. How y’all doing? It is Friday. Whew! I’ve been working hard today doing, uh… church stuff. I had a meeting at the church this morning and then I came home and have been working on a few things around the house. I’ve got some packages from our store to drop off at the post office. I’m gonna stop there right now. Mary ordered us some pizza. Apparently she was feeling in the mood for pizza. So she said, do you feel like going to pick up some pizza? And I was like, yeah sure! It makes me happy whenever she thinks of foods that she wants to eat, because often when she’s on IVs it’s just, it’s hard to think of meals. So I’m gonna pick up some pizza, drop these at the post office, I’ve got more work to do this evening. It’s kind of gonna be a couple busy days of getting my sermon done for Sunday and keep on keeping on keeping on with Mary’s IVs. Good wor- good news is that we… got the blood results last night after we ended the vlog and Mary’s blood work is… uh… still at a place where she’s okay to continue and I was convinced that her blood numbers, like her whites were gonna drop and it was gonna be unsafe, because I think that… at least I know aztreonam has made her blood counts drop before, but maybe it’s the combination of zosyn plus aztreonam is okay with her body, or maybe her blood is just, her body is just working, her bone marrow is working better. I don’t know, but the good news is we’re continuing the plan. And let’s go get some pizza. Hi you guys! Happy Friday, happy Saturday to you guys when you’re watching this. And the boys just went outside. It is 60 degrees. Let me see if it still is. Let me see on my magical little box called a phone. Meh. One-handed. Oh boy, this is a challenge. Hold on. [giggles] It’s still 54 degrees out. So, since it was so warm out today… I have this window open and I can hear the sounds of the cars driving by and the… the sloppy street with the melting snow and it’s such a good sound, just the sounds of outside. Because that means that it’s warm enough to have the window open. Today has been just a normal day. My stomach is better than it was yesterday, which I’m so thankful for! Yesterday was a little bit out of control in the stomach department, but… I had eaten some… food that I have really enjoyed. One item was egg salad. Egg salad, you might think, is like really a gentle food, like… bland. But um, I don’t tend to digest eggs very well. I don’t know why that is but it’s true. So anyway. I don’t know if it was just an IV side effect explosion or if my stomach was like not digesting the egg salad. Who knows. Either way, today has been better and I’m really grateful for that because that was out of control. Okay, well earlier today I went into the working room and I was signing some prints and I was trying to pack up a few orders, and then just a few minutes after going in there I realized how wobbly I was feeling, like… Ugh. Like kind of seasick. That’s sort of how the minocycline makes me feel and [coughing] Um, I just wasn’t feeling good. So Peter was like, babe, you should just go back and lay down. Um, so he’s good to, he finished up the last couple things that needed to be done in there, but… anyway, I came back to bed and then it’s just a matter of like… I hate to say passing time, but some days it does feel like I’m just trying to pass the time and today was one of those days, and so when I was feeling like, I was feeling really side effecty. I just wasn’t feeling like I can… I wasn’t feeling up to like, facetiming friends or family. I was just like, uck! I was feeling like kind of jittery or like… sick of sitting in bed, basically. Mentally jittery, physically just uncomfortable, and I was sick of watching youtube videos and I was like, you know what? I should write a little bit. Last January, so a year and a couple months ago, Peter and I talked a little bit about our goal of someday writing a book, and I had already written three, I don’t know, I’ll call them chapters. But I had written a few times on a few different topics with this book in mind. And so today I was like, I should open that document up on my computer and that’s how I want to use my energy. So I sat here and I wrote for a little bit and it was really good and it was, um, you know, it takes more mental energy to write than it does to watch a video. But that’s how I needed to use my energy today. And so it was really good. And so then… that kind of jazzed me up a little bit. It woke me up and woke up my creative side, and then I was able to talk to my parents on FaceTime and… Now it’s evening. Peter just got back. He was out working for a bit. He just took Ollie outside. I’m excited to see Peter, and… Yeah, that’s about it, but I just thought I would update you guys on how today went. It was… another day on IV’s. Um… tonight, uh, today the medical company delivered this little contraption which is gonna test my oxygen tonight. My doctor wanted to see what my oxygen is doing overnight. Um. And so I will wear that tonight and we’ll see. Whatever happens happens and… What else? Just doing my IVs… Dealing with side effects. Um, I was trying to think of how, how can I explain some of these side effects? And I do remember being on aztreonam, which is one of the antibiotics I’m on currently, I remember being on it as a teenager and the way that I described what I was feeling back then was that my brain felt like it was tickling. It was like tickling my brain. That’s what I said and just like a day or two ago I was sitting here in bed, and I thought, my brain is tickling. It’s not, it’s fine. It’s totally fine. But I thought oh, I know why I described it like that. That’s what it feels like. So I guess, kind of…all the little side effects kind of add up. So it’s like, my mouth feels a little like, itchy. I don’t know if itchy is the right word, but… allergy-ish, like my body’s kind of having a reaction, which we know that my body does kind of have these reactions. Um… My marker of… allergy kind of goes up a little bit when I’m on IVs, a blood marker called eosinophils. Um, the joke, did I say this in a vlog? I forget if I said this or not, but the joke this, this uh… week when my parents were here, my mom would be like, ew, are you not feeling good? And I was like, no, not really. My eosinophils feel really high! But like, that’s how it feels, like… Like, just a little allergy-ish. Ugh, I don’t know how to describe it, but anyway, so my brain was tickling. My mouth was a little itchy. Not… it’s not like itchy tongue like anaphylaxis. It’s not like that, but it’s just like this overall weird kind of sensation. It’s like… It’s like the drugs are… [clears throat] Affecting me systemically, which they are. We’re putting them through my veins. Of course, it’s gonna be systemic. But anyway, and then the kind of feeling on a boat feeling and then uh, nausea and… this time around the nausea is… I’m just taking zofran. I didn’t have to add a second anti-nausea agent and um, I’m still able to eat. Ah, I’m so grateful for that because the last time I was on IVs, er… Yeah, the last time I was like not able to eat. So I’m really really really thankful that even though I feel kind of gross and nauseous, I’m still able to eat. So I will take it, man. I will take it. That’s my update for you. It just started pouring! And it’s beautiful. [rain falling] Sounds amazing. Thundering and pouring. [rain falling] Hi. [giggling] [Mary] Oh wow, I think there was some lightning too. [Mary] That was good timing that they came in. [Mary] Are the windows up in the car? [Mary] Oh, whoa. Oh, I guess I need to close this window. [rain and thunder] [Peter] Wow! [window closing] [Peter] That came like a wrecking ball. [Mary snorts] [Mary] Yeah. We were just outside. It was so peaceful. [Mary] That was crazy! Yeah. [Mary] That was crazy. So now I’m just gonna hook up to my fluid bag and keep these kidneys… [Peter] Frozen? Happy. Oh wait, I’m gonna get so cold. [Peter] I just took it out of the cooler. That’s fine. I’ve got blankets. Anyways, I think I really want to make brownies. I’ve been thinking about brownies lately. Okay. We can make brownies. Thanks guys for joining us on today’s adventure, including the calm and the storm, and… That was deep. [both] As always, we will see you tomorrow. Good night! [Mary] Goodnight Ollie Boy. [Peter] Goodnight buddy. Good night. ♬♬

93 Replies to “MY BRAIN IS TICKLING | SIDE EFFECTS OF IV ANTIBIOTICS ? (3.15.19)”

  1. Wow, 60 degrees! I live in TN and the high yesterday was only 55 here. I'm so ready for spring!

  2. Glad Mary You seem to be feeling better how sweet Peter the way You take care of Mary You guys are awesome love all three of You God Bless

  3. Glad your feeling better today…i dislike antibiotics side effects,I was having those last night as I am still trying to get over this lung infection…my brain tickles when my nerves flare in my brain due to my MS…my daughter and her friend are going to See 5 Feet Apart…i am not in any hurry to see any rain for awhile due to all the flooding we had and continue to have here in nebraska….have a great day Mary and Peter

  4. Hi guys. I'm really looking forward to when it's summer again and you take your boat out on the water. That's always such a joyful time for the two of you and Ollie boy.

  5. HaHa you reminded me of my 86 year old mother that calls my smartphone my "magic phone". It's so cute. You're cute too.

  6. Mary, you seem like yourself this round, your personality and sense of humor is still going strong despite the side effects. It makes me happy to see! ? Hang in there you guys; you are doing great!

  7. I'm sitting watching this and thinking that Mary really does have a good life in spite of her challenges. She has Peter, Ollie and her Parents. I don't have any of that. But I would not trade with her. I have my health issues but nowhere near as difficult as hers.

  8. I had my Bi-Pass surgery Wednesday they only made 4 outside incisions & ran the new Artery inside from my rt shoulder to my abdomen & then leg to leg. I'm also on IV Antibiotics & have received 6 units of blood & they're getting ready to start a new bag.
    I'm so happy that your not totally having alot of your usual side affects. You are always in my Prayers!! May God Watch Over You!
    Sincerely, Cindie Mayo
    ?

  9. HI Guy`s , Mary that is great you have an appetite , and how was the pizza ? I love pizza !! I think you and Peter writing a book is a great idea.
    Anything that brings awareness to life with CF can only serve to inform and educate the public , and in turn bring you that much closer to a cure. Plus it will end any stigmas that might be attached , remember 2019 is the year we end all stigmas , 2020 we shall al be free !!

    So Mary , you are not on those IV drugs full time right ???? , How much longer must your be on them ?? just curious .

    Anyway , have a great evening , Peter have a good message tomorrow , all my best , take care , Gary 

  10. Hi.Mary I love you so much and I'm sorry for your sickness and i want to say something to you .tried to stop eating the sugar and sweet food including the fruit that is not good for you.
    And I ? you
    I hope to be better and gad bless you.

  11. I'm weird I'm allergic to Zofran it makes me throw-up. I have to take Phenegan. And yesterday while I still had in the breathing tube some nurse gave me Zofran & it clogged up the tube & I couldn't breathe. She could of killed me!!

  12. I love hearing the rain and I totally get that allergy like feeling. I have a large growth (melanoma) on my nose that does bleed and I already had bad allergies before it but my nerves get affected by the growth and sometimes it’s like my histamine Rxn goes up too. And Benadryl does help it though I try limiting that by just taking a daily Zyrtec so ??‍♀️ but yep it’s fun trying to describe the weird nerve allergy pain (but not always painful sometimes more itchy) to my mom when I describe it.

  13. Hope you are having a good Saturday! We are praying for you. Its also my 18th wedding anniversary! Take care.

  14. You’re more than allowed to have off days, Mary, especially whilst you’re on IV’s xxxxx

  15. Hey Mary, did you know they are now running that "Fake Service Dog" ad on your channel? I saw it first on Chronically Jaquie, who also has a SERVICE DOG, and now on your channel and about 5 minutes ago, I saw it on yet ANOTHER one of the Vloggers who has a SERVICE DOG! Ugh! Nothing but rip-off artists…..you might want to inform all your fans not to fall for this company! Love and Blessings, Grannie Annie from Maine

  16. In not trying to be mean by no means but I was told if you constantly dwell on the side effects your going to have more. Just try to block them by not thinking about them so much

  17. I love it….if it's something more attainable for you to write on a blog that would be a kool Idea….or an Ebook.

  18. I get parasthesia with adult doses of Benadryl. I have to take a child’s dose bc of that when I take it.

  19. happy saturday Mary, my daughter has a chronic problem shwa having a MRI for headaches, please pray for her we hopeing its a pinch nerve

  20. I LOVE the phrase you used, "That's how I'm using my energy today", Isn't that so true with chronic illness. Picking and choosing how to use your energy, specially on certain days. As always you guys know exactly how I feel………. it's kinda weird lololol ….

  21. Hey!!! Wait a minute! What about the pizza? Peter you get us excited for pizza then we didn't get to see it ??

  22. It's 48 degrees here where I live. I'm not feeling good this I was not outside today I'm on 3 antibiotics right now. Well done with 1 yesterday on the others yet. That's life when you got an infection. I love the rain. Oh its so relaxing. I try keep my Windows open to.

  23. 2:00 when the non cf patient knows more about cf than the cf patient does (I don’t mean Mary she is very intelligent ?♥️)

  24. I think I really want to make brownies

    Seriously….this is my life ha ha

    On a side note, it's so nice to see this round of antibiotics going so great. Keep up the great work Mary!

  25. Hey, so glad you were able to come up with the idea of getting back to book writing! Time can drag when you aren't able to do a lot of physical movement. Praying you to better health; please keep writing!

  26. I live in MS and it was in the 50’s here today. The sun peeked out a bit and it felt nice so I opened the back door. Glad Mary’s blood work came back good.

  27. One antibiotic I used, made me jittery, nervous. Some have made my head feel funny. I do not have CF, still, I would think most ppl have side effects of sort.

  28. I know the feeling baby doll. I had cancer removed two weeks ago, was readmitted to the hospital Tuesday and just got released today ??
    Its physically exhausting. I haven't posted the video yet because I just got home but plan on uploading it soon.

  29. So I've kinda just started watching and I'm trying to figure this out without asking because I worry that I might sound rude or get bad comments back, but I'm stumped….. Why are you sick? Like why do you have ivs and feeding tubes and things like that? I hope you are feeling better soon though!

  30. Nice to hear someone getting some rain… here most of Australia is either in drought or a long dry spell. Agricultural output is way down.

    Take care, Mary. Urk… chilled IV fluid, at least you are still at home.

  31. I go for blood work here soon as well to see how well I am holding up on my antibiotics…wish me well…don't want to change meds again…i am so glad ur blood count was good…i know wat u mean about stomach issues on antibiotics…they can b rough on the stomach…my stomach is finally settling down while on these antibiotics ?

  32. Listen you little freckle face. You're so sweet. You brighten my day. I'm always rooting for you over here in Colorado. Patty

  33. Hi Mary, Peter and Oliver.. I haven’t been in hardly at all to see how you were .. my sweet Dog got very ill and passed away… you guys always make me smile and I love your love and support for each other. It was so cute about your brain ? tickling. Love and prayers for you. ♥️♥️♥️?

  34. You said egg salad and I cringed. My body will never tolerate egg salad, I don’t know what it is. I love scrambled eggs. I like the taste of egg salad. It just messes up my digestion.

  35. How strange as you said it's pouring it started raining here too. And not only is this a totally different day I also live in the UK. strange

  36. Mary, when you were scratching Ollie's neck under the chin, my black toy poodle girl does the same movement – she lifts her head and holds still – she loves when people do that 😀

  37. Could you guys do a video comparing your experience with CF and how it's portrayed in Five Feet Apart? Thanks!

  38. Mary, I love how you enjoy the weather no matter what its doing! Sunny, yes! Snowing, yes! Raining, yes!!!

  39. Mary you should try Sea Bands, I suffer from vertigo on a daily basis as one of my Ménière’s symptoms and I definitely recommend you try them to help relieve that wobbly side effect your having. I pray it helps!

  40. Last time I had my windows up I spent a week in the hospital, so many allergic things came in so be careful

  41. I'm cracking up everytime yall get excited that its warm and then you say its in the 50s. I'm in Alabama. I'm becoming really grateful that my "warm" is not in the 50s xD

  42. So I doubt you will see this, but today I got my order in from your shop. I ordered one of your beautiful prints and a sticker. I noticed you dated the print 3/15 so I went back to watch the vlog again from that day (this vlog) and every time you talked about the working room or anything to do with the shop I got so happy and I have the biggest smile on my face. You had said you were signing prints and i was like “Signing MY PRINT!” This made my long day of work so worth it, love y’all so much??

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