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Vlogging with EDS: I Finally Got A Port!!!!| Week 31
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- Опубліковано 11 чер 2017
- The long awaited day has finally come! I finally got a port-a-cath implanted which will eventually replace my PICC line for my home IV saline treatments. It will allow them to take blood and administer IV meds without having to poke around with my fragile veins. As usually with EDS, the experience has been a bit up and down so far. But I am so very happy and thankful to finally have had this procedure and look forward to getting to swim this summer, as PICC lines can not get wet.
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Sleeping Christina is CRAZY! you definitely need to get a night vision camera! and probably some oven gloves taped to your hands! So glad you didn't have to go to the ER. You need to take your own advice and take the time to rest a little! You do way too much :P
Nurses are great! I had an anxiety attack in the OR recently because my IV was messed up and all the hurdles talked to me and distracted me to the point I stopped crying and almost forgot what was going on. I'm happy for you that yours knew about Headspace! What a smart person!
So glad you are on the up and up! Keep the rest and recovery going- really glad you now have your port!!!
I am recovering from 3 level acdf May 11th. Recovering definitely it's a roller coaster ride. I found your Channel by happenstance I'm glad I did. I know it's okay to have tears and smiles back to back. You're so lucky to have such a supportive team behind you as do I. Thanks for doing what you do! Blessings to you and your family.
I'm beyond inspired by you.
Im so happy you didn't have to go the ER! 🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🍀🙏🏽
I'm so incredibly happy for your progress, even with the weird setbacks of sleeping Christina (lol).
you've become my inspiration for being my own advocate and fighting for a diagnosis (what ever it may end up being). I've even started a daily blog to document my journey and progress, as well as just vent enough to not be so stressed out about it.
So happy you got your port. Hoping and praying that you can start using it and get the PIC line out. Love your smile 💖😃💖😃💖
Christina, I adore you. I do want to offer you a tiny bit of my experience with my EDS and how it all began with major sleeping problems. I actually did get a motion detection night vision camera and had 5 sleep studies. My SI joints have been unbearable for more than 20 years and we thought I had juvenile Rheumatoid Arthritis for 10 years. I had weaned off a major pain pill dependence and had started to have major sleep paralysis and hallucinations with that, I was suddenly sleep walking and talking again. All of this I used to have as a really little kid. For some reason the pain pills were making me feel like I was rested but then of course they turned my life upside down. During all of these sleeping symptoms I was also having narcolepsy symptoms and absolutely could not rouse or stay awake like I had been just days before. I went to my PCP who was fantastic and he wanted a sleep study done and gave me info on narcolepsy. It fit. Like a glove. Due to the SI joint instability and severe pain I would wake up and be sitting up with my legs tucked under me with my face on the bed in front of me, so sitting up folded in half or a Z I guess. I was paying this doc out of pocket so I couldn't afford a sleep study until several years later but I was sure I had narcolepsy. I was catching all sorts of insane things I would start doing in my sleep literally within the first hour I would fall asleep (after the night insomnia). I was getting drinks from my bad habit of having a soda bottle next to the bed and would play with my hair, I even ran in my bed in a strange way and had just a TON of activity all night long, then wake up laying down again with sleep paralysis and I would lay back down within the hour before waking up like that. So I was active all night long. Very active. Then I began spilling sodas on my lap or on my poor dog when I'd be sleeping, which ended my drinks by the bed. Anyway, long story short, in all of my sleep studies I was diagnosed with very mild sleep apnea, so mild no treatment was needed but had it been I would have torn the CPAP mask off and tossed it across the room I'm sure. I was also diagnosed with periodic limb movement disorder, and REM behavior disorder. I already had a diagnosis from years back of sleep paralysis and hallucinations. So they didn't want to diagnose narcolepsy because I was too anxious to nap during the day testing. But my new PCP treated me for narcolepsy with cataplexy which cane on a bit later. I joined the narcolepsy support group on Facebook and after a while I learned a ton and someone kept telling me about EDS and saying I sounded like I should be tested for that. I thought "no chance, too severe, too rare, sure". But I'm adopted. I did all the Beighton Scale testing on my own at home and was super hypermobile and have had chronic joint pain and surgeries but had tested positive for JRA. But unlikely to have two kind of rare things, then I suddenly became super allergic to gluten and was diagnosed with Celiac Disease and then had my cortisol tested and it was 0.6! (Normal is like 12 or something). All of this was severely affecting my dog grooming business and I was having these dehydration seizures every now and then. So then it became narcolepsy with cataplexy, sleep apnea, Celiac Disease, adrenal fatigue and JRA with all those sleep disorders in the mix and I was hypermobile. I was tested at the Rheumatologist and positive for EDS. Since then, 5 years ago now, I was given an article about sleep disorders with EDS and everything to the T was within that article. Without narcolepsy. So it's now atypical narcolepsy due to EDS and my seizures are from Dysautonomia, I now have severe bloating and constipation with gasteoparesis and dysmotility, heading into surgery for that and we've found my cervical spine has shifted almost into my spinal cord and I will soon be needing a fusion of 5 or 7 vertebrae. It's all come on very fast but then again I look back at my childhood and was called a faker, hypochondriac with a ton of different "maladies". Now I am dislocating my hips and ribs and have subluxating everywhere except my elbows. Everything has been explained with the EDS co-morbidities. Oh! And my eyes are both lazy, have always been and my eye doctor when I was a little kid asked about genetic conditions because I had zero depth perception, then the patch didn't work, I had visual perceptual learning disabilities and my eyes change daily. I have terrible photo sensitivity and a very strong nauseating sense of smell. I had (what I now know was) a huge mast cell flare when I was 8 and one limb swelled and turned purple with hives but they were painful, as that would go down the next limb went up. It lasted 24 hours and I never had it again. That has been my life. I just relate on so many levels and had staved a lot of it off for so long with pain pills or because I wasn't listened to or called a liar.
I love your videos. I swear, I was just on the phone balling to my mom because it's Christmas and my GI surgeon needs to do surgery for my GI tract and I am SO SICK. I feel awful and I had to miss Thanksgiving and Christmas because I'm stuffed to the gills and can't be around food. I'm nauseous constantly and can't throw up. I'm afraid of what's in there because nothing has come out the other end in MONTHS. No way do I want to see or taste what that would be like and I don't think I'd be able to stop. It has come on so fast now that I'm white knocking it until my surgeon can get me in for surgery. He doesn't know EDS and is saying he wants to do a GPOEM surgery which doesn't work for patients on long term pain management which I am now on methadone because I don't build a tolerance to it. My meds don't work because I'm just swallowing them into an abyss of old rotten food. So I'm just relying on your positive outlook (you are literally half my age and I'm off crying to my mommy because I have a huge tummy ache and a dislocated hip and patella won't stay put lol! I just wanted to tell you about "Sleeping Six" because we both have EDS and we both have a very similar alter ego that only comes out while we are sleeping! I learned that my Celiac Disease has now gone off to some reaction to other things instead, I get huge blisters in my mouth. But I can eat gluten again no problem. It's so weird. And my adrenaline rush comes at night and tanks in the morning but it's not Addison's Disease, it just adrenal fatigue from EDS. And my Rheumatoid Arthritis test the 10 (now 15) years before, was a false positive. So....nice to meet you. And thank you for helping me get through these holidays waiting for this surgery in hopes of getting a G-tube which this unaware doctor who knows nothing about EDS is saying he won't do yet, but I really can't go round and round with one disorder when I'm seeing 500 specialists for a million things and I don't have time to be his guinea pig. I don't want to chase my tail and waste all this time just to try this out when it's typically not going to work for me and I'm going to wind up with a tube anyway so let's cut to the chase. I'm 44 and I want some sort of life. This is crazy. But you totally understand and thank you for giving me hope when I feel hopeless and that beautiful smile that just beams and makes me know I can do this. I wish I had known about this. I gave it to both of my children and my youngest daughter is very very sick. She's 14 and has had 2 multi organ transplants. Anyway, this is way too long. I hope you get to read it because you wonder about your sleep and I think I have that answer. It's a Zebra thing. Merry Christmas Christina to you and Lauren and your mom and dad and family. And thank you.
Your vlogs are never too long. I love your videos.
can you do a video about what you do for pt and ot?
I'm so pleased you finally got your port, you will be able to swim now this summer 😊😊
You're amazing, you must listen to your body and if it needs sleep go with it and don't get upset with yourself if you can't do what you think you should do. if that makes sense take care Poppy x
so happy for you christina!!💕💪🏼
Sleeping christina is such a menace. Maybe you should talk to one of your doctors about the sleep walking, it could be a side affect of one of your meds. Anyway, I'm glad you've got your port! I hope the next access attempt goes better and you can get your picc line out soon!!!Love and spoons.
You're so right about having the right team! After I had a major surgery a night nurse of mine was supposed to check on me every 2 hours to check on my pain. She didn't check on me for 8 or 9 hours! I had to get more dilaudid. You're so tough I admire your strength and attitude :)
Claire Frey yes I agree I've had alot of surgeries and I agree too the right team makes things so much better!
So glad for the double positive in your port placement! ❤❤❤
You are such an amazing person with such a great attitude about everything You go through so glad everything went well with getting Your port praying You heal and that Your port works with no problems also praying that Your jaw doesn't get worse praise God that nothing's bad wrong with Your port glad You are able not to have to wear Your brace as much God Bless
I have bupivicaine in my intrathecal pump along with the Sufentanil. It's a very good anesthestic. So glad u got ur port!
This ia the first week i started watching,
great that you got a port! and you should get to a sleep specialist to see if they can find out why you're removing your brace and stuff
I just got my first PICC on June 2nd and that was an interesting experience. The nurse who did it (I am inpatient then and I am still inpatient) said my veins were very stretchy so she was having trouble threading the wire in because of that and my veins were very schelrosed so she had to stick me 4 times. I have gotten my PICC for TPN because my digestive system can no longer even handle NJ tube feeds. I am planning on requesting a port for IV access in general and requesting a more permanent feeding tube because I have had an NJ for so long
Hopefully the port helps! I'm excited for you!
YAYY YOU GOT A PORT IM SO HAPPY FOR YOUU
Oh, it was great to see you without you neck brace, like you conquered a huge hurdle! Way to go! I'm thinking about "Sleeping Christine" and I'm wondering if you take Ambien or anything like that to help you sleep? I know people who have done some very strange things while on that medication, and had to stop taking it. On the other hand, I sleep with a CPAP, and there are times when I've woken up and taken it off, turned the machine off and have no recollection doing it! And, I don't take Ambien. Hope your Port is doing better!
i have the same feelings after the Port placements. still feeling it now after 5 weeks but it is now getting better finally
You mentioned valium, which is a benzo, and they can suppress REM and slow-wave sleep, which could be why sleeping Christina is acting up so much. Be careful with going down in dosage of it too, benzos are very addictive and can cause pretty awful withdrawals.
+Ruby .Q Interesting! That would make an awful lot of sense! We will have to see if she starts to behave a bit better once I am weaned off/down. I am being very careful weaning, I've done it maybe a dozen times now so I know to be careful. But its still no fun lol
Can u please do a feeding tube set up video ?
I juat got a port bard powerport on June 2nd....its sooo much better and more convienemt than a picc line
You look super comfy wedged between the huge cushions😂😂
This weeks vlog was exiting and I was so nervous about you having to go to the ER and maybe redo the whole thing. So happy you didn't have to.
This problem with doing to much I think is common with people that suffer from chronic illness. It is so hard to know when to stop and rest. Never knowing how much energy you really have until it is too late. I burnt my self out last week and I am paying for it now with crazy vertigo, heavy allergies and more pain than I usually have. This time, it was worth it :)
Many healing thoughts to you.
I'm glad that you got your port, but I'm concerned about your pain. Is there something you can take to help?
Goob job! :) Keep it up!
What kind of port did you get? I'm getting one soon and I'm scared I'll react to the port material.
can someone explain to me why does she uses that neck stuff? what does that thing do really? thank you
What are you going use the port for?
Kelly Eberly its to inject her medications into. that's what her picc line is for as well but she's wanting to be able to shower anf stuff and that's why she got the port instead I hope that makes sense
Omg good for you!! Please notice me! I love your videos so much !
Can you please explain what the port is for x
You may have been joking about needing therapy, but I cannot recommend it enough. There's a huge stigma around mental illness, don't let that stop you from taking care of your emotional health. My therapist helped me to learn to deal with having a genetic disorder and everything that goes with it. Before I was really bitter and resentful about missing out on my life but now I'm capable of moving past those thoughts and living my life to the fullest. She also works on pain management skills with me (mindfulness, meditation, radical acceptance) and I've gotten off most my pain killers other than miobic and some breakthrough meds.
What is a port?
Hell yes fentanyl is a super strong pain killer.. I always wondered what they actually gave that to people for I mean.. Shits 10x stronger than heroin and heroin is 10x stronger than percocet and she was having it PICC lined straight to it.. (Yea I'm in recovery so of all the things I focused my attention right to.. Of course it was the Fentanyl mention) but just.. Dang I can't imagine her feeling much of anything if she was dosed with that shit. Anyone know if she takes opioid pain meds on the regular? I mean.. Id assume she did.. And that that's part of what she crushes up and mixes with water to shoot into her PICC..in another of her vids I watched but (which actually reminded me of watching an IV heroin user prepare to shoot up) I don't think she ever officially announced she was on pain meds maintenance.. But again id assume she would be if she's in the kind of pain that I hear comes along with EDS.
Maybe she and everyone else with medical conditions should try CBD oil or other marijuana/hemp based meds I mean.. My dad just found CBD oil (non mind altering just.. Pure extract from the plant that doesn't get you high) and just a week or two later now.. He SWEARS by the stuff for all of his problems. From pain to sleep. He even threw out / stopped getting HIS opioid pain meds (cause lets face it.. Opiates suck. They're just Really never the way to go yo treat pain IF YOU CAN HELP IT.. Before I have someone yell at me) but yea I mean.. He just swears it handles, or has started to handle, all of his problems from A to Z. I personally have terrible carpal tunnel and because I'm terrified to get the surgery.. Especially with me not being able to take narcotic pain meds.. Even for short time.. Even for ONE DAY.. I just can't do it. But he shot some of the stuff under my tongue the other day.. And other than tasting terrible.. Unless you like the taste of taking a dub of weed and chewing on it.. Or eating an overly strong pot brownie (like all pot no brownie) I think it may have actually helped man! And I was even telling my dad I thought it just had a placebo effect on him. And like.. Because he though and really wanted it to work in HIS MIND that it did.. But shiiiittt I think he may just be right and that all of these hippie type millenials swearing by the powers of pot may actually he on to something !
Hi Christina, since my compliments dont have any effect on you. I think I will have to settle for your sister and start sending compliments to her too. I am just a 50 year old single boy, so I think I am a great prospect for her :) ! She is by no means sweet as you are, but a bit devilish, but cute too :) lol