Vlogging with EDS: Settling Back In | Week 48
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- čas přidán 8. 10. 2017
- The last few weeks were such a blur! I can hardly believe I am uploading another vlog. Im hoping to be able to put more work and creativity into my content now that I am back home and settling in. I scarcely know what I have uploaded the last couple weeks hahaha. But thanks for sticking with me through it all!
Zip Front Bra: m.romwe.com/us/Zipper-Front-Hi...
Where to find me:
My Instagram: @watercolor_me_impressed / watercolor_me_impressed
My Etsy Shop: www.etsy.com/shop/ChristinaPa...
My Redbubble: www.redbubble.com/people/chris...
My Personal Facebook: / christina.doherty.315
My Medical Facebook: LoveOnChrist...
My Twitter: C_DohertyPaints?l...
My Email: Watercolormeimpressed@gmail.com
Lullabye (Sting) by Twin Musicom is licensed under a Creative Commons Attribution license (creativecommons.org/licenses/...)
Artist: www.twinmusicom.org/
The dog's reaction to having you both home
+LAOUINI Ikram Thank you! 💙
Your dog's reaction to you and your mom getting home is so spot-on for my dog when my mom and I get home - I had to send her the vlog and have her watch that part. She totally agreed! (Also, now one more person knows what EDS is, she asked me what it stood for.) I hope you get some more time to relax this week, even if it's just a bit here or there. It's good to see you were able to take a day off and rest!
+Lauren Baker Aww thanks! Im glad the pup made you happy lol. 💜
I have spinal fusion and I find that Marks and Spencers in the UK sells both great front closure and traditonal bra closure sport bras. The one I have is a traditional bra closure, but I put it on by doing the hooks in the front and then spinning around, rather then behind my back, as I do with all bras. Pulling things over my head generally doesn't work for me either. :)
+Josephine Edwards Sounds like a good excuse for a trip across the pond 😊 Any excuse! Haha I have always wanted to go to the UK
What a week! The desk/work station is awesome! Such a sweet dad to give you such a great return home suprize! And your mom- awe such a great mom making sure you are good through the nigh by camping out in your room! And getting the on-the-go pump! How cool for you, I sure hope it is way helpful! I am so happy for improved vision for you! And I get the entire "being allergic" to people thing... So sorry you had to go through that on an already tough day... Ha ha ha sometimes I politely tell folks that I know who can take it well and that I am friends with "I sure can taste your smell today". It's like all the stuff they have on just soaks into my body and eeeekkkkk it's not comforting at all, my head hurts, my eyes hurt, I can taste the smells, and the rest of my body because of the adrenalin gets over stimulated and then the crash comes... Looking forward to next weeks video! And as always you are always encouraging through the great, good, bad and ugly of it all!
2nd, haha could not resist!! What a cute dog!!
Victoria’s Secret has a bunch of bras that are front closing :) I don’t have spinal fusion but I do have a lot of problems with the muscles in my chest which make it hard for me to lift my arms above my head to clasp bras behind me! I can drop a few links to the ones I like best if you’d like ❤️ Love you & the vlogs!
Kendra M. oh yes...once you wear victoria’s secret bras, you never go back. sooooo soft and comfy.
+Kendra M. I will definitely have to try those out. I know they are a bit pricey, but nothing beats their silky fabric.
Wow thank you're father for me, now I have an idea how to do my daughter her room! Xxx lots of love
+Zebra life 4 us #hEDS I will! I am so so happy with my new space. 👌
A helpful tip for the next time you spill all the little glass beads is put a stocking over the hose of the vacuum.
vlogging peacock great tip! I am going to try that one thankx
+vlogging peacock Very good idea! I may still have to give this a try. They are still everywhere lol
Your room is so cool! That desk is amazing plus I love demon barber too that picture is so awesome! Glad you got home safe and settled in with proper port care etc. Plus your doggy is super cute xx
+Miss Adventure Thank you! That was a painting I did years back. I can’t wait to get back to painting like that again ❤️
A happy I had this week! I get a LOT of hand pain from writing, and the NHS doesn't cover ring splints so until recently I just typed a lot of notes. It's not the same AT ALL and I don't absorb information as well! I have a friend who is a Stationery Geek and he recommended a certain pen to me with a large, twisting grip called a Pelikan Twist, and it has SAVED MY HAND AND I CAN WRITE IN NOTEBOOKS AGAIN!!!! In celebration I bought an academic planner (I'm a part time work from home psychology student because chronic illness) and some pastel highlighters and some gridded notebooks... For whatever reason I can read much better against grids than lines....... Did it make up for the lumbar puncture I had while 100% resistant to lidocaine...? No. But it came close!
+Mary George Yikes on the LP front, but I am so so happy for you that you found something that works for you! That is major! I am the same, I love to hand write everything when I can
Hey Christina! Why don't you print out shipping labels and stick them on the envelopes? It could save you some hassle :)
+srokachannel I had a few people suggest that. I think I may do that. I didn’t want to add any more to the shipping costs for my customers, but it can’t be too bad. Im sure it would be worth it. Although I do like the personal touch of handwriting
Handwriting is great - but not at the expense of your eyesight! :) (trust me, I have an autoimmune disease that slowly makes me go blind :) )
Hi 'scuse the dumb question but in the States (I'm British) why do u refer to "shipping" parcels? Does it date back to pre-airmail?
have you tried explaining to your sisters friends about the fragrances? i’m sure they just don’t have a clue and if they knew about it, they would take a shower before coming over or not using fragrances before coming over. most people just don’t know and aren’t informed, especially with such rare, strange and unpredictable situations and conditions.
+Jaclyn Jenkins it’s definitely seeing we have addressed. We tell everyone who comes to our home. And she thought she had done what she could. The problem is people really aren’t aware just how sensitive I am and they are used to it. Even things like laundry detergents set me off. So when someone is from a home where there is smoking or say they throw on a coat that they had worn with perfume a few days before, they are unaware of the danger that could be. My mom said she couldn’t even smell anything on her.
Christina Doherty ahhh gotcha. i didn’t know whether or not they were aware. i’m so sorry it’s that bad! i have days where any smell makes me puke, but luckily those are few and far between lately. and because of your many years experience, i am going to assume that you have tried different air filtration systems, whether within the home or just within your own room.
I am so nervous . I was told last week I am switching from a PICC line to a Hickman line and I am nervous for the change in how I care for it. I was told I will be able to do my own dressing changes which will be nice but it will definitely be a learning curve to say the least. They want it done by the end of this week and I wasn't expecting it to happen that fast. More room for error when learning something new
Good luck!! That sounds super scary, and exciting. I hope it goes well for you!!
+Madison Sorry if Im too late here! I hope it all went well. Its so scary having a new “accessory” and having to learn all the ins and outs of it. 💜
I hope your Mast Cell stops freaking out, and you find either a new medication or that the Zolair wasn't the trigger after all! I hope next week isn't too bad. Love and Spoons!!
Lovely to see you relaxing and taking some time off!
+Charlie Dickinson Thank you, I assure you I am trying! 😊
Oh yes what a blessing you have,,to have Dr.s who know and have heard and willing to treat someone after surgery who has "dead gut" quote??? Gastroporesis so so lucky girl sweet girl you are. I am afraid I will have to travel a very long ways to get the right help. I live yes,,, in Idaho. I am so so frustrated beyond words. Tonight I had quite a bit of cold water, laid down in a slight decline, woke up to my body just throwing up the water quite a bit. I live alone,,, I was choking, up chucking, choking so hard and coughing bad!! I thought I better hit 911. After a half hour of coughing and growling and throwing up I guess my body was done . A mess with blood and water. This is happening more and more,, I was so scared...I guess what I am trying to say is your so blessed awesome Parents And most of all DR. S who aren't afraid to treat, keep it going strong strong girl!!
+Victoria Davis Oh my goodness, that is so scary! I hope you are a bit better now. Im so sorry you are in a place where you are not receiving adequate care. Please think about sleeping on a wedge pillow or raising your head and trying to position on your side. I don’t want to know what could have happened if you had aspirated 💕
It really is amazing how much effects mast cells, because they really do get set off by the weirdest things (I.e., perfume for car next to you). Sorry to hear about the xolaire reactions, that's a bummer. I know that was helping you so much. I'm so glad to hear your vision is continuing to improve!
+Daniel West Right?! I mean, you just never know what is going to set it off!
I agree with you that crocheting is a restful activity. I’ve always seen that kind of activity ( knitting, crocheting and needlepoint) as therapy especially while watching TV. May I ask where you got your pattern for the blanket you are making now? What kind of yarn do you use that washes up well. Thanks, Christina!
You are always such a joy.
+Lois Cassels Well thank you! 💙
Sammy. Oh my gosh. The best.
+Becca Charpentier Lol Sammie is an adorable little brat 😂
Crochet is so relaxing! Unless I'm totally out of it, love doing it while watching tv. I can't *just* watch TV and not do anything, hah. Also, I write in 90% cursive. It's just so much easier.
+Bailey Vaz Right?! I feel like I no longer have the attention span to just watch TV. I need to feel productive somehow
Antoine Challita I'm diagnosed with it.
You are adorable ❤️
LOVE your jewelry and video! I port issues as well yesterday
+chronicles of a chronically ill girl Thank you! I am so very sorry you are having issues with your port! I hope you were able to fix the problem ❤️
The red T-Shirt from october 4th suits you so well, colorwise! :)
+TheJanaRina Why thank you! 😊
you look so cute in a ponytail ah!!!! love youuuuu
+Carly Sutton Aww thank you!
Thank you Christina dear. I finally got my neck brace like yours today. I’m so happy. How do you get tested for mast cell? love seeing smile 💜🙏🏼🌈💪🏼keep fighting with grace
+Lali Tobey Testing for Mast Cell can be a bit complicated... you have to find the right allergist/immunologist that is familiar with it. And they can do some blood and urine tests and even biopsies. But its hard to catch. It seems like the most effective way to find out if you have it is to see how you react to the treatment medications.
Crocheting/ knitting is NOT a restful activity for me, haha. My neck, back, arms, & hands get SO sore.
+Megan Smithers Yeah... my wrist needed a vacation... at least it was an extremely simple pattern, so I barely needed to look down at it.
Where do you buy your jewelry supplies/gems from? Your jewelry is super cute!
+Jessica W I get things from a variety of online suppliers. I use ebay, amazon, and etsy a lot. And some specialty sites. I can’t go into any craft stores because of the smells, but I think it’s significantly cheaper if you buy online, but I suppose that depends on if you are making one piece or 20 since online is usually bulk supplies 💜
I'm confused! I thought infusion bags that have had the air sucked out of them for portability needed to be refrigerated until use because there's an increased risk of bacteria growth if they're left at room temp (because they've sort of been tampered with once already)???
I recently had a reaction walking by someone's apartment from a laundry detergent they used - just like you wondered about that person's cologne, I am now wondering about this person's laundry habit. How much freaking detergent does one need to use? Love your vlogs, hon - and your desk is amazing! ( I am using our dinning room table as my desk, which seats eight, and I usually cover the whole thing with my stuff, lol) Blessings!
+Claudia H. Blanton Right?! Honestly, they must seriously go through products so quickly overusing them like that!
A sleep therapist might help you! I have fibromyalgia and a ton of other comorbidities (I know you understand. The list is LONG.). I've been feeling dead exhausted for years now and I've been sleeping poorly since I was 12. I completely understand what you mean when you say you're exhausted. It's extremely difficult emotionally, physically... Just everything is affected. I had a sleep study done which was a bit uncomfortable but well worth it. I found out I have mild sleep apnea and since getting a cpap I've been feeling more alert during the day. I'm still always tired but much less so. I still have to force myself awake in the morning but once I'm up I feel more awake which is definitely nice. They have other devices too for sleep apnea like retainers or nasal plugs and such. They watch your brain waves and breathing etc all night so, who knows, maybe they'll even find whatever is causing your poor sleep if it's something unrelated to sleep apnea etc
+nicole mcnaughton I am going to see someone about it. I just got a good recommendation from a friend. I know that I do have sleep apnea, but I failed the CPAP. Hoping there are some other options available
Christina Doherty You can fail a cpap? 😮I know they have both nasal and oral devices aside from a cpap but I haven't done too much research yet 🤔 I hope you find something that works for you!!
Yes I bought a Victoria secret front snapping bra.better fr shoulder dislocations n neck and chest issues
+nick papa That sounds awesome! A whole new world of comfort and function has been opened to me 😊 haha
Put a nylon over the end of a vacuum hose and they won't go through so you can keep them!
+emma etcetera 👌 A+ advice! May still put this to use, they are still everywhere 😂 Its like a free foot massage wherever I walk
could do with a label printer where dont have write all addresses by hand only need stick on packages can get hand held ones
It might be easier to address the packages if you just print a label. That way you can just copy and paste from the list of orders
+judesmum1 Someone else brought this up too and I think I may try it. I was always wary to use special labels so I could keep my shipping costs at a minimum, but it’s probably worth it at this point
What sort of treatment do you do for random Mast cell reactions like that? I try to take Benadryl but I swear sometimes it just doesn’t cut it especially when I’m exposed to smoke+other triggers. 😣
Also I totally get the being allergic to people thing! My fiancé visited from college this past weekend and I was in TEARS when I discovered I was allergic to him 😱 Luckily we figured out it was the combination of a change of laundry detergent and certain hygiene products. So after lots of cleaning we got it fixed but it was nevertheless very upsetting. 😓
Bethany H just our of medical curiosity: Could you take Benadryl before an attack to avoid it for example in the case that you feel your threshhold is low, like Christina described here?
TheJanaRina In theory, pre-taking Benadryl sounds like a really good plan and would probably work for some people with angry Mast cells but unfortunately doesn’t work for me personally. I’m not currently on anything to control my Mast cells because I’ve failed out of the maintenance meds we’ve tried so my threshold is always pretty low. Even if I take Benadryl before I’m exposed to something, which I try to do if I can predict exposure, I still have a pretty notable reaction. Plus I have Gastroparesis so my absorption is all wonky and I can never tell if a pill has actually made it into my system in time
+Bethany H Interesting. Do you know if you respond differently to IV benadryl? The gastroparesis could very well be messing with it’s effectiveness. But even benadryl isn’t a miracle. I still usually react after pre medicating. But I do feel that it helps. But the IV benadryl seemed to do a much better job. Did you not tolerate cromlyn sodium?
Christina Doherty I haven’t tried IV Benadryl but I’ve been thinking about asking my Dr about it since oral Benadryl doesn’t seem to working as well. Yeah, I failed out of oral Cromolyn - I couldn’t stop throwing up and it gave me some airway swelling and a migraine. I’ve heard that some people respond better to nebulized tho? But I have to talk to my doctor about that too I guess.
"I'm gonna be more PORTable!"
+Oliver Likes Cats 😂😂😂😂😂
Why not use address sticker labels?
+Jessica B Good point! I always stayed away from them because I didn’t want to increase my shipping costs, but at this point it may be worth it
I was wondering if you had ever tried ketamine injections/infusions? If so, how did your body respond?
+Chronic Butterfly No I haven’t. Im very sensitive to meds and have never been brace enough to give it a try
First! lol :)
I totally relate I’m a total bitch when I’m having a allergic reaction
Also a selfie stick as stupid as it is, may help ur arm from not getting tired
+nick papa I have seriously thought about it! Haha
it was your sisters friends last time with smoking cigs i know cant say no friends or there smells they wear etc but your reactions are life threatening not just oh having a allergic reaction take a tab for it
You do seem up at hours that is bad for you. Do you practice sleep hygiene and avoid your phone and bright lights an hour before bed?
kirafaye I'm the same way
+kirafaye I answered your question in my most recent vlog. But no, my sleep hygiene is pretty bad because of some post trauma issues.