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MISDIAGNOSIS & WHEELCHAIR IS HERE TO STAY (Chronic Pain Update) [CC]


[ANNIE]
Do I look like Shawn Hunter yet? [EMILY]
Yes [ANNIE laughs] [Background noise in the hospital;
inaudible voices in the hall] Right now we’re doing, uh, a ton of injections. Trying to figure out a diagnosis, I guess,
I don’t know what we’re doing anymore… It hurts. Cut to me being home, um, definitely did not
record the rest of that doctor visit. It would’ve been torture to try to record it and torture
for you to watch it cuz there was just a lot of screaming and begging for mercy. So for
those who haven’t been following along, I was born with a few foot deformities and some
bad knees and it didn’t really limit me as a kid; like sure I was one of the slower ones
in running laps in P.E., sure I would get tired, my feet would hurt after a work shift,
like stuff that I wouldn’t have called symptoms like, you know, everybody’s back hurts at
the end of the week, everybody’s feet hurt at the end of a long shift, like, it’s not
really that big of a deal. And it was all fine up until last year, my limits were no
longer a long shift and I had to put my feet up, my limits kept decreasing, and you know,
it became … rapidly started getting worse. Like after four hours I couldn’t take the
pain anymore, three, two, one, until I couldn’t even stand more than a few minutes without
the pain being too much. More than literally a couple of minutes before the pain became
completely unbearable. So last year I started having to use a cane and eventually a wheelchair
to get around, we all thought what was going on was that my foot deformity had finally
caught up with me so we thought, if I get corrective bone surgery that that would relieve
me of my pain. So in January, I started surgery on one of my feet because the pain is in both
my feet, to correct my bones and it was a really painful process. I would be walking
by now, but I’m still in a lot of pain. So if you’re just here for a quick update and
can’t really stay for all the details, um, long story short, the pain that I’m experiencing
is completely unrelated to my surgery, this is the same pain I was in prior to my surgery,
only it’s gotten so much worse and I cannot tolerate putting any weight onto my foot at
all, which means that physical therapy and my recovery from this surgery is not gonna
go like a normal one would, I will not be able to start learning to walk until I can
find the source of my pain and how to solve that pain. That was way easier to say than
it was to hear, haha! Alright so, if you do have some time to stick around, I would like
to talk about the details and about what’s going on. So the clips you were watching before
were from my doctors visit from March 31st and my doctor checked my X-rays and pushed
on pressure points, on places that would’ve hurt if my pain was related to the surgery,
my bones appear to be healing nicely and the surgery went really well and I do not regret
having the surgery because in the long run it would only be beneficial for me, should
I ever get walking, that my bones are corrected and I will avoid a big old mess when I’m older,
so I don’t regret it. The X-rays and testing pressure points were then followed by several
injections of local anesthesia, which a lot of it didn’t really take um, and he was just
trying to use the local anesthesia to try and isolate and see where exactly this pain
was coming from and as well as to see if I could make my foot numb, then maybe I can,
you know, put weight on it and walk on it, but the local anesthesia was not working and
it wouldn’t numb it, even through ALL the stabbings that I went through that day. I
couldn’t put weight on my foot, it was awful. So the final finding was that this is not
a pain of my bones [surgery], I mean, there is SOME pain from the surgery, but it’s not
the pain that I’m feeling, there’s different kinds of pain in different places. And so
my doctor believes that this may be a spinal issue or a neurological issue or a nerve issue
and he is referring me to a spinal surgeon or a pain specialist. So what does that mean
for my physical therapy? I will be continuing physical therapy because I have to continue
to try to gain mobility in my ankle and in my toe, toes, plural, my toes don’t move.
I have to do that or I will lose function, total function of my foot, I have to keep
my foot moving, even though it’s in pain. I can’t put weight on it but I have to learn
how to mobilize it again. It looks like my wheelchair is here to stay for a while. How
am I feeling? I feel exhausted. I feel depressed. I feel like for months I’ve been pushing,
pulling, extenuating like a rubber band as far as I could, the rubber band just like
snapped all the way back to the front after all the work that I did. Emotionally, physically,
everything. I can’t leave the house by myself, I can’t do the jobs that I’m accustomed to
doing, so I’m not really sure where to go from here but.. um.. I’ll figure it out, I
guess. So what are you gonna do next? What about your GoFundMe? So, as far as my GoFundMe
goes, it’s gonna stay open for my medical expenses, even though walking may be in the
distant future, if/when we get a solution for the pain, I have a referral for the spine
surgeon and the pain specialist, I will need money for an MRI and whatever other scans
I may need to diagnose me, we are looking into acupuncture, magnet therapy, aquatic
therapy, all these things that could help me improve. And improved mobility aids, like
I said, this wheelchair doesn’t leave me feeling very independent, I cannot drive myself anywhere
because I cannot get myself into the care and then get the wheelchair into the car on
my own, I always need to be assisted so the money in the GoFundMe will also go towards
helping me get improved mobility aids that’ll improve the way I’m living my life right now.
All of that together with also continuing my physical therapy so I do not lose function
of my foot. A possible diagnosis I’ve looked into because of my friend Stacy is RSD/CRPS
which is a progressive disease of the autonomic nervous system so we’re gonna look into that.
And it’s you know, emotionally really hitting me at this point that it is a very sincere
possibility that I’m not going to walk and that is really terrifying. I’m really surprised
that I’m keeping it together because I could not stop crying yesterday. I want my independence
back, I want to go on adventures again, those are the two priorities, there have always
been the two priorities in my life, to help and entertain people and to go on adventures,
to have fun. As long as I can do those things, I can be happy. And right at this moment I
feel like all of that has been taken away. I’m isolated, I’m constantly dependent on
others, which kills me, man! KILLS me! I’m currently unemployed and in constant awful
pain, all the time. But I’ll get back up… I’ve done so every time so far and we’ll keep
moving forward and I’ll figure it out. If you are able, please donate anything you can
to my GoFundMe or to my PayPal button, I have a PayPal button on my Tumblr on both Annie
Elainey and Stop Hating Your Body. Any little bit is going to help towards bettering my
chances at diagnosis and solutions and improve my mobility as well, through devices and anything
else that I may need and if you can’t donate anything, which of course I completely understand,
because hello, I’m HERE. Ha! You can also just share the link or share my videos or
just watch my videos and that all helps too, that’s if you wanna help and I am forever
grateful and I’m so appreciative of everything that you’re willing to do for me, everything
and anything that you’re willing to do for me. Alright, so let’s try to end this video
on a positive note, no matter how depressed I am, let’s always try and look at something
nice and light and positive. So let’s think about what I’m thankful for. I’m thankful
of course for being sheltered, for having a place to live, for the food that I have,
for internet access, lord, thank you for internet access! For books and movies and music that
I have access to thanks to the internet and to DVDs I have on my book shelf. I’m thankful
I still have some use of my right leg, meaning you know, several things like, I can stand
up on it for a minute to maneuver myself around, reach some higher places, I can also use the
bathroom by myself, thank goodness, so I’m thankful for that. And at this moment I’m
thankful for you for taking the time out to watch this video and thank you for caring
and thank you for supporting me in whatever way you can and if I can ever do anything
for you, never hesitate to ask. My ask box is always open and I try to be as available
as possible even though it’s pretty vulnerable most of the time but whatever, I love you
guys, so it’s nothing really. I think that’s all the details I really wanna share for now
and I’ve shared as much as I think possible, so that’s that. God, I really don’t know how
to end this. Um, I love you, guys, I appreciate you and I’m still going to be making videos,
I’ll try to find the motivation to do that but I just need some rest for now, it won’t
be that long and I’ll get right back up and I’ll see you guys eventually, bye.

20 thoughts on “MISDIAGNOSIS & WHEELCHAIR IS HERE TO STAY (Chronic Pain Update) [CC]

  1. Stay strong Annie. I admire your positivity even in the face of something like this, and it must be disheartening to find out the source of your pain isn't where you thought it'd be, but you can definitely fight this and you're doing so well already – take however much time you need to figuratively and literally get back on your feet. Lots of support from here.♥

  2. You was and you still are one of the persons who helped me through so many hard times, who gave and give me a kind of home with stophatingyourbody and who has always been so an unbelievable big inspiration for me and I wish that I could help you and give you something back in any kind of way, I would love to donate but because I have completely no money, all that left is to wish you the best of luck! I wish from the bottom of my heart that you will be well again, as soon as possible!! <3

  3. I've suffered from depression for some years now, and other than the obvious lack of motivation and etc that comes with it, it also brought a heaping amount of low self esteem. Hearing you say that you feel depressed because of your foot and pain and wheelchair, it cannot explain the despair it brings me when you have changed my.life. its so strange to me because i havent been following along on tumblr or twitter or anything but i missed your videos so i came searching for your videos again and am only now learning what you're going through. It saddens me how your spirit has changed. I identify deeply with your depression, although mine stems from completely different reasons. And even though whatever semblance of confidence i have comes greatly in part of all i've learned from you, your videos, your blog, your beauty and your kind words and your strong spirit, i know you are human. I know you have bad days and problems and schoolwork and etc etc etc. But may you get better quickly, in every way. Take all the time you need to care for yourself, for your mental, physical and most importantly, emotional well-being. I cant say how many lives you've changed but i can say you've changed mine, and for that i will be forever greatful. Sending prayers and positive energy to you, always.

  4. You are such an amazing person. I am so happy to have found you 🙂 Chronic pain is something I also deal with (to a lesser extent than yours, and hopefully it does not progress TOO much as I age!), and I wish you all the best with your journey <3 I really hope you do well. You are such an incredible presence on the internet! big big hugs

  5. theres so many things i want to say after seeing you live through this painful time on facebook and so many things youve helped me with over these years. but all i can really say is the one thing that is going to get you through this is outlook you have losing hope will only make things more unbearable i remember going through the recovery process when i had to get corrective bone surgery on my left knee and the idea i might have to go through with that again with my right knee is scary but i know you will come out of this ahead you are a brave and amazing young woman

  6. Hiya – I know this is an older video but I'm just wondering where you got with investigating the possibility of CRPS/RSD. I have it and when you were describing the pain (on a different video) I thought it sounded similar to what I have going on.

  7. Have you looked into Fibromyalgia? I know this sounds crazy, but I know a strict wholefood diet might help. I know someone who had fibromyalgia and went on a strict wholefood diet and whenever they do this their symptoms improve dramatically. I also get chronic fatigue and get joint pains and food sensitivities and a strict diet is the only thing that helps me as well. I would of never have thought diet would have such a big impact on the function on the body. There would be no harm at least trying to implement it. I feels for you. I can relate. It's hard having a chronic illness.

  8. you're awesome and I look forward to watching more of your videos. I think it's super important that people share journeys like this <3

  9. Thank you for telling us. It's not always easy to be able to tell people WHY you use a wheelchair. I use a wheelchair because I have mitochondrial disease and POTS. The mitochondrial disease makes my muscles very weak (I use a scooter wheelchair because my arms aren't strong enough to push a manual chair), and the POTS makes me very dizzy and out of breathe if I'm upright for more than a few minutes.

  10. This to me is the most relatable thing in the world. I'd had back pain for as long as I can remember. Sometimes I would have to miss school as a child and all the doctors would is give me muscle relaxers and painkillers and tell my mom I probably strained a muscle playing. She used to get so annoyed because that was the only answer they ever wanted to give us and then as I got older the pain got worse spread to my hips, legs, and feet. It hurts worse on my right side. At 19 a doctor suggested I get a MRI and it turns out I have juvenile degenerative disc disease with bone spurs in my spine that press into my spinal cord. I also have five herniated disc. They shaved the bottom at S1 L5 to relieve so pressure and pain but because it was untreated I have permanent nerve, muscle, and joint damage. I also had an undiagnosed and rare stomach condition. That got diagnosed soon after my back issues. My stomach condition was called Median Arcuate Ligament Disease and it cut off the blood to my stomach, spleen, and liver. Thankfully the blood flow has been restored but it also left long term effects like gastroparesis and liver disease. I think because I grew up in rural southeastern Kentucky that nobody ever took my health seriously do to drug seekers. I had doctors tells my mom to find my a good therapist because I was making all this up for attention. So I lived years not eating from nausea, vomiting, and stomach pain, and years limping and stealing my grandfather's extra canes so i could it school. I was happy to have the validation but sometimes now I wish I could go back to before knew this illnesses had names so I could be in denial.

  11. This is like a year after you posted this, but I just stumbled across your video (I have CRPS myself) and I really hope you get/got answers, chronic pain truly is a beast 🙁

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