Vlogging with EDS: Should I Stay or Should I Go? | Week 93
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- čas přidán 14. 08. 2018
- So sorry to be so late in uploading! Things went from bad to worse and my health had to come first. As you are reading this I am likely headed into surgery to try to fix the issues I am having with my shunt. Fingers crossed all goes well!
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“I was butt naked in a parking garage.”
“Well just the bottom half”
“Well that’s the butt part!”
😂😂😂😂😂
anyone else get really exited for monday just because there’s gonna be a new vlog?
Ashley Arrington me too!
Yes! It makes Monday good!
Yes me too!
Yes I just found her Channel and I've already excited for Monday
Christina, yes. My family can relate. Your focus has been on staying alive and keeping your body functioning while at the same time maturing. You are young but not the youngster you were. Traditions are important and meaningful; so is forging ahead. Your willingness to be vulnerable is a strength not to be underestimated. Knowing that while most people are good but not necessarily good for you...very freeing. Thank you for sharing and giving us the chance to support you and also benefit from your wisdom. Life is hard. Life is wonderful. Thanks for shining a light on that reality. 💕
I look forward to you every week. I related too what you said. I miss walking and having energy. I have started part time university this week very part time! I am a PhD snail 🐌
Anika Baddeley you got this!
Christina, my body waited until I was 42 before it decided to rebel. Since then, I've lost a 7+ year relationship, most of my friends, my career, the ability to drive(which is my favorite thing in the world to do!), and some of my sanity. I don't have visitors come over to see me. The one friend I have left, doesn't stay long when he does stop by. I am finding that I now have more in common with others in the EDS community and other spoonie communities than people who don't have a chronic illness. I think it's because we understand each other. We all know these struggles of losing things and friends, losing ourselves, then trying to find ourselves again. Common experience draws people together. 💜🦓
My heart goes out to you, and your honesty about this transitional time in your life is wicked brave. You are brave and very inspiring just by doing your best every day, even if it just means resting.
Don't go back, move forward, create new. People that matter will stay, people that don't will fade away. Life is now, today, this day. Make the best of it and if the energy isn't there, make the best of that.
Much love
/Linda
I am obsessed with that sunflower quilt. I really wish I saw this 5 years ago bc I cannot find anything like it anywhere
Hugs. I can definitely relate. I’m at the age where all my friends have children. My baby is my dog and I feel bad for my husband because of all the medical issues. People don’t talk to me as a peer because I don’t have the same lifestyle as they do. I have to reserve my energy and I have issues etc. love and prayers ❤️💕
Christina, I love how you keep plugging along, making the most out of life - despite the next roadblock or speed bump. Most people don't even have to confront this problem until they are elderly, so you've gotten an important life's lesson over with waaaaay early!
Don't feel you have to follow what everyone else is doing. You have your own unique path to walk in life, and it's making you into wonderful, insightful person with tons of inner strength and character. When the time is right, you will become what you are meant to be.
Speedy healing to you, for your next surgery! :D
Dear Christina,
My heart goes out to you. I am much older than you but have had a neuro-immune condition for 4 decades now which has severely curtailed my functioning and pulled me out of normal life. The grief of the constant loss we suffer is something we live with everyday. I don't think there is a solution. We are isolated by disability and as time goes by we do drift in a different direction which only those who suffer similarly understand.
The disconnect is understandable. No one is made to struggle so much on a daily basis. In the 'wild' we would not survive so our psyche is not constructed for such protracted unrelenting private suffering. We get tired on the deepest level of our beings and the surface world can not always compensate.
As one who lives in that world I think I know what must be behind the scenes for you, what you do not share with us. Those dark times where we question the worth of the struggle, when it is all too much...when the world has changed around us, without us.
I 'could' with effort go to the nearby beach though I would pay for it. I used to make that trade off to feel normal. But now I just go there in memory. Our lives are woven from our individuality and the community. The community does not consider those who can't 'turn up'. That is a reality that is hard to come to terms with and is never really acceptable. But that is where we are and we adapt for better or worse.
What we have in compensation is a deeper knowledge of ourselves and our capacities and an appreciation of each other.
Your sharing of some of your life with the world is a great gift to us. I hope in some way our responding back brings moments of comfort in the seemingly endless battle.💖
I live in Maryland
Dear Christina, we watch you're vlogs like a serie, a little bit every day. Today we watched the last bit. We now what you are going trough with the updates from Facebook and we want to wish you a lot of love and luck. We think about you and your family every day, wish you all the best xxx
I totally understand what you're saying, i think it's pretty normal when you miss out on a lot for a long time. When my friends tell about the concerts they've been to and the nights out they had i feel sad.... Not because i don't want them to enjoy their lives, but because i feel envyous! And i feel a lot of the time i have nothing to tell people. I lay in bed, watch a ton of CZcams, Netflix and every single show and movie under the sun, go to doctors, therapists and try to deal with mast cell degranulation, dislocations, neck, back and SI instability, POTS and a heck of a lot more. My days are nothing like my friends' days and i try to be okay with that.
I hope everything goes well in PA and your shunt gets figured out! Love, Hugs and Good Vibes.
You don't have to explain yourself to anyone, enjoy every minute of you life the best you can and live in the moment, I've had to change my life so so much and it's been hard and it's took me 2years to come to terms with the fact that you can't live in the past change is frightening however can be life changing , I've become very ill, moved across the country and had to give up a career I love , however I have found my soulmate, rediscovered crafting , and found lots of new friends, so embrace your new life you are young beautiful and very talented, take care xxxx
Sending you so much love Christina!
I so love your vlogs! I can’t wait till the next one!!
Your videos makes me smile, I wish you feel better soon.
Your in our prayers Christina !
Beautiful socks!!!
It is so hard to let go and grieve your life before illness. Expecially when it seems like no one around you relates anymore. Just know there are still people out there who are also looking for "peers." 😉❤️
Hi Christina, this was quite a week for you in so many ways. I admire your candidness in sharing your feelings about your self discovery journey. I’ve never pitied you, I only admired the way you handle your challenges with grace and a wisdom that is beyond your 22 years. I’m 62 so I’m not your peer, however I once was 22 and I understand what you are saying about the need to let the past be the past and recognizing the need to move forward as things change. It’s wonderful that you have Trish as your PT and friend. She sounds like she is very intuitive and a talented healer. I just want to say that throughout life you will find yourself reinventing yourself from time to time. I’ve been a hair stylist in my twenties, a registered dental assistant in my thirties, a Reiki practitioner/ teacher in my forties,fifties and sixties. I had to step away from my practice three years ago due to the progression of hEDS and other issues. This was a very difficult decision for me but I became increasingly aware that it was now time to focus on my own healing. Through it all I have always been involved in art and I find that being an artist at this point in life is where I need to be and it is nurturing my soul and keeping sane. I see you are an artist too and that it’s helping you on your healing journey also. I’m sending you much love and understanding and support. Take good care beautiful Christina. ✨💞✨🦓✨💞✨🙏🏼✨💫
Christina that was so funny with your sister. When your sister snatched the wig that reminded me of a Maury Povich moment lol
im sorry you have to deal that detachment, its hard and few people can help. i hope you can find your way through those heavy emotions. i wish you the best in the coming weeks 💚💚💚
Good luck with yr visit about yr shunt hunnie. I hope yr back to getting better days soon... u r such an inspiration. Sending healing yr way xx
You are an amazing young lady.
You got this Christina!!! 💪❤️ I saw you ended up having surgery and I am so sorry but I hope this means u will start to feel more like yourself very very soon 😘
I haven’t even finished watching your vlog, had to stop and say...ITS GREAT to see you again! Either I’ve not received notifications you have posted. Or I’ve just missed it somehow. Either way, great to see ya again..now back to the vlog. :)
I have spent most of my life dealing with medical issues. I am 47 now and I have so many regrets and in the last few years I have developed new health issues that have further limited my life. It’s hard when you have to decide how much is safe to risk to enjoy the moment but sometimes life means your path changes. Take time to discover the new you and what you truly want and need to do but only you can decide - trust your intuition 😘🤗
21:59 is something i needed to hear today. thank you.
Christina, I will most certainly buy the sunflower blanket when completed, let me know what you decide, thanks !!
Love your videos
I think it is hard for people to relate to those of us with chronic illness, and even more so when we choose to be joyful in spite of it, which you are so good at. Keep pushing ahead and remember all of the friends you’ve made because of what you’ve dealt with, and how relatable you are to all of us who look forward to your blogs each week.
Also, have you tried heating your saline before infusing? It really helps to keep me from getting chilled and triggering my MCAS. (I heat in a bowl of warm water, then wrap with a heating pad on the pole, not sure how your pump would change that.)
oh Christina, I am so sorry you are feeling that way. Life can be so tough. You are doing well, God is stronger in you than you may realize at times. Love you, praying for you!!
Hey beauties (you and your sister) love you guys ooodles and ooodles 💜
Awesome vlog! Christina, thank you for sharing so much of your personal stuff..I was right there with ya..been there. Life is no doubt a ride full of adventure. A few of the roller coasters happen to have some pretty sharp turns that aren’t so friendly. Your attitude for life is right where it should be, and I wouldn’t want you to change a thing about your character and personality, especially your heart! Your truly one of a kind and I’m so proud of you, and honored to know you here on CZcams. If I would one day be fortunate enough to meet you, I would tell you the same. Your a fantastic human being.
As far as fitting in, you don’t have to..odiously you don’t realize this, but your excepted where ever you go. People who see you, meet you walk away telling themselves what a great person you are, I’m so glad I met her. Promise you xo
Aww Christina, I hope you feel better soon!! I'm so glad you were able to do all of those fun things before things started heading south. If you want to auction your beautiful blanket, you can try Ebay!
Christina I relate to you on an emotional level and I really appreciate your effort to be visible. I don't have the physical issues that you do, and many people don't, but know that empathy is not the same as pity! Girl I feel you! Sometimes it's the hot mess express right?! If you're ever near Upstate SC, or want to talk to someone who's not going to pity you but thinks you're cool as heck....let me know! ❤️
It was so nice meeting you at the conference! I get the disconnect thing, I started getting ill when in high school And now I have to figure out how to live but hey I’m living and that’s a start
Good luck here if you need to chat
CHRISTINA fever, chills, and other issues when you infuse anything is the first sign of sepsis. You need to get to an ER right away and get blood cultures done!!!! Unfortunately , those are the only symptoms until your body crashes and by the time that happens, you can die within 12hrs and will be very sick in ICU.
the shorter black hair is so cute on you!!!
and i totes feel you on trying to get answers on your back. i feel like ive been trying for years ugh. unfortunately, not many of the doctors in my state are specialists for what i have. i just gotta keep trying.
Ok I understand
I think that wig looks amazing on you.
I used to live in the Fitchburg area which is a half hour north of Worcester.
When I read the title I thought you were going to stop vlogging talk about a mini heart attack 😂 love you!
I inherited a pair of Birks from my mom and I also need compression socks because high pulse + poor circulation. So yeah, I wear socks and sandals some days.
Woo woot! Rock it! So comfy!
Yes your body is telling you to pace yourself. Those chills and body aches/ feverish flu type feeling is a sign of a crash from Me/Cfs. If you keep pushing it makes your endurance worse.❤
Oh Ive just endorsed you for all your nominations on Wego !!!!!!!!!!!!!!!!!!
I think it would be really cool if you could teach us how to make the sunflowers that you're making because I absolutely want to learn how to make it because I grow sunflowers in my garden to hold up my other point and I find them to be very beautiful
What you have been going through and feeling is exactly what I have been dealing with too. It’s not fun to realize just how much your whole life can change when you’re dealing with health issues. I might not have EDS but other things that have similar affects on the body and mind. I know that you mentioned that it took years for you to finally get diagnosed and find doctors who know how to help you and probably had a few make you feel like a hypochondriac and it’s all in your head. Or if you got up and outside and exercised you would feel better. It really makes you wonder where they went to medical school and how did they ever graduate. I had one doctor for 10 years and to start with he was great, but the last 4-5 it became clear he wasn’t listening to me and what I was trying to get across to him regarding my pain, difficulty walking, standing, severe migraines, losing the feeling in different parts of my body and how these things were affecting my daily life. I was still teaching then and by the time I got home around 5pm I was done. I had no energy left to cook let alone eat. I had to force him to order the MRI that saved my life. After that first surgery his only comment during a routine appointment was that I could have died or become a quadriplegic on a respirator. I just stared at him like what the heck. I couldn’t change doctors just yet because we don’t have many that know what their doing and the local hospital is terrible. All the great ones are an hour away. I slowly started switching to the doctors related one of the big medical schools we have here in NC. As the new medical issues came up I discovered that having my doctors under the same umbrella made it easier for them to communicate and work together to treat me and see the big picture. I got extremely lucky and located the physician assistant who was with my first doctor that had left when he started getting weird. She was the only reason I still went to that doctor because honestly I usually saw her and not him and after she left that practice went down hill quickly. I started out on medical leave that turned into short term disability. This was through my work and because I was a state employee I was able to get disability benefits from the state. As a few months turned into a year and then 2 we had to face the facts that with the seemingly endless health issues popping up and the affects they were having that I wouldn’t be able to continue teaching. Facing that reality threw me into a deep depression because working with children and was my dream job and a huge part of my identity. Yes I had lots of other interests, hobbies, but my health issues were preventing me from doing them and when I tried it was one obstacle after another.. Having to type up my letter of resignation about put me over the edge. Tons of tears and emotional roller coaster happened before it was delivered plus I was forced to apply for SS disability which was not something I ever imagined I would do. While the changes were happening I was scheduled for a surgery that had to happen before a certain date and suddenly I was faced with the fact that my health insurance was stopped during the transition from short term to long term disability and the delays were affecting that surgery and whether or not it would happed. With lots of phone calls and the help of a few state representatives we got my insurance back up and working and thankfully I was able to have the surgery. One thing that drives me crazy is that there are way to many people who are on disability that really don’t qualify for it, but have worked the system. I get mad because I have been audited twice before I got my SSbenifits and just recently I am in the process of being reviewed. I more than qualify with all of my medical issues and actually had a doctor that they sent me to tell that it was a waste of both of our time since it was abundantly clear that I had more than enough health issues to qualify and a psychological evaluation wasn’t going to change anything. As you know anytime you are diagnosed with an illness, disease, syndrome or anything that affects your life and doesn’t go away for example my first was when I found out that I was diabetic. You go through different stages before you completely accept it and understand that you are in control of your treatment and care. It has been the same with each new challenge. I have also had to deal with the fact that once you are diagnosed with different things various people disappear from your life and that is hard to deal with and it lets you know who your true friends .
i know you want to do all you can i think you already know what you should do you know you xxxxx
You've been in fight mode & it was needed. You have a right to feel things; frustration, changes.... But 2 things, 1. You are very intelligent, witty, engaging and a joy to listen to so No, i don't see any reason people would pity you.
2. Change is scarey; that's the normal reaction. It's hard to lose what you "think" you were when all along it wasn't things that made you. You are still you. Hope that made sense lol 💗✌
Aww sorry your feeling crappy ,I think when you are in pain and have problems for a while you just become run down with everything and need a brake from it all ,I hope you get everything sorted and you start picking up very soon not much fun when you feel like that ,well your strong keep fighting ,love watching your vlogs o and don't cut that lovely hair the wig was ok but your hair is ace well untill your next vlog you rest a bit and take things easy bye for now gentle hug sent to you x
Keep smiling. :-)
❤️
I would love one of those blankets you are making they are beautiful
Mackenzie Powell
Me 2
We both live in Massachusetts!!!
Birkenstocks promise caught on camera, mom xxxx
5th like! Hope you get out well of this as well as you make us feel with your vids :D
lol "i might not have made it to every lecture, but you know what? i was there" literally my perspective on everything. i might not have participated but i was there and that's already a lot from me
Trish needs a blog/vlog to share her secrets!
eBay is a popular bidding site to auction off the quilt 😀
Love the socks Bonnie knit you! And the sunflower crochet pattern...did you make or find it online. My mom loved sunflowers and afghans so making her one would be an amazing present. Go CBD!! Woo! Can't even see the burn. I use it on my fragile EDS skins where it doesn't want to heal and it heals it right up! Looks like I am starting Xolair soon. My pulmonologist called and told me that seems like the logical next step since we've tried prednisone so many times (hope it helps my mast cell too! I started cromolyn liquid to drink =/ but it doesn't seem to be working too well but there is a difference without it)& I love Little Women & Anne of Green Gables!pressing flowers used the be a passtime. I had with my great grandma. 💜 I am praying for this shunt to be fixed simply and then you can go back home. I am looking for another therapist but I have seen so many that my insurance covers and we haven't meshed well that I am scared I won't find anyone. But all in God's timing! I am glad Trish helped you. I had a PT who saved my life with the wisdom she imparted on me and the emotional help as well as physical. I'm so glad you have Trish & That you shared with us! I love that dress, Lauren! Do you have any tips for keeping kitchen smells out of your room? My room backs up to the kitchen! Also road trip hacks for hEDS and maybe just chronic illness in general and central line and feeding tube care on the road! Maybe you can maybe little videos on this when you're feeling better! I am getting a new hydration backpack that will also fit my purse contents so I am happy about that. And I'll check out the clips from brave soul blankets. (= thanks for the tip! You've got this. 💜✌😎🌺
I have that striped robe! Love your fashion sense, socks & sandals included! :)
Yes!! I wear Birkenstocks with socks. Best ever! ❤
Watching this vlog a week late and I'm sad you weren't able to go to New York. Hoping you're feeling better soon (i'll find out in the next vlog, I assume ;) ) xoxo
Also, in the wig, you totally rocked a Morticia/Wednesday Addams vibe
I think that the stigma of wearing socks with sandals is a Massachusetts thing, because here in Mississippi people wear socks with sandals all the time. I used to live in Massachusetts for 30 years and when I moved down here I thought it was a weird thing for people to do that.
Nice silent B-roll 😜
Just take 1 day at a time you will be ok hun
Christina, you should never ride a car putting your feet up, because in case of an accident, the air bag would deploy and that could potentially hurt your legs in a very bad way. I know it’s very comfortable but it’s also very dangerous.
don't think of trying get back who you was because that person is gone that time was full of changes on your body and mind there is no law that says you can't make new things you love or find what you love doing but also what you want to do in your lifeyou can do anything you let yourself take time and really find what you want to do and where you want to be xxxxxxxxxxxx
You’re a much better patient with physical therapy than I am. As you know I loath it 😂😩
I view it as my job. I don’t always want to go to work, but If I want a good future then I have to give it my all now
oh. being chilled/aching w saline could mean cranky kidneys. it happens to me sometimes
Hmm very possible. My kidneys have been cranky...
can you do a video about how ring splints work? i understand they help and work but ive never seent hem before watching you a couple years ago. it would help watchers that are non eds like me or new to eds and not knowing what they need
I don’t really fit in either in HS and I’m 25 with no chronic illness. I’m a cancer survivor, so my perspective is completely different. It’s sad to explain everything.
I recommend 1.5 g IV cocaine over a 12 hour period.
If your chilling after flushing your port; it is very likely that there is bacteria colonized on your port. Sepsis happens very fast. If you have a low grade temp you need to call your doctor for instructions or go to ER!
I am in the hospital now and just had my shunt fixed. It was over draining and leaking so I think when I ran fluids I was just exacerbating those problems. Since surgery not a single issue and have been running fluid nonstop and had many labs drawn ❤️
You can auction on ebay
o rly?
How much for the sunflower 🌻 blanket? I am willing to pre pay
Not as serious but I always feel like I have to explain my weight when I meet people bc I have pcos. It makes me feel so detached in social situations because I'm so concerned about my weight.
It's been too long since I've seen you how are you doing?!? :D your neck seems to a little better yes?? :)
Totally off point, but you're super pretty and cute.
Wig snatched 😳😂🤣
And theramu works because even unwell you don't have the purple blue gray eye bags!
😂 I must say the white balance on this camera is VERY forgiving.
Too bad you can’t tape it down to stop it from turning.....
Nything christina i thumbs up ahaha. I want tat wig wherre is it from
You are my inspiration as I go on this extremely tough journey of trying to be believed and trying to stop my pain without pain meds because they dont work for me unless they are high dose and I can barely eat so... Pain meds are a no go. I'm truely struggling atm but then I saw you uploaded a video and I remembered I wasn't alone. Literally woke up from a dream where I was too tired of all this and was trying to kill myself. But I'm trying and Ill stay strong. #spoonieprobems #zebrastrong
I want your socks 😍😍😍 maybe not with sandals... But I'm not going to judge you 😂
Hello! I also dislike this "pity" and I don't relate to a lot of people of my age range too(I'm 23). I met most of my friends at the university and the thing is: we all are disabled but we didn't know the other was when we met! Most of us have ASD and I'm the only EDS person in my friend group but it's okay; my friends learn about it each time we meet. For the vacation thing, I also did not feel like going on holidays this year. If anyone asked me about it a year ago I would have said yea let's go but now... It's not me anymore. My mother and I used to travel to Morocco, where she was born and lived for 36 years (so we have our whole family there) but I was like "Nope, I don't feel like it." And I was right. I had to travel down to Paris to meet EDS doctors when my mother was on holidays so it was worth it (it's a three-hour drive from Northern France). I'm going back to Paris in a couple of weeks for EDS testing
Don’t put your feet on the dash!!!
Super dangerous
I think everyone’s been butt naked in a parking garage at least once