RE: @Girlbeforemirror: A Tribute to Astonishing Talent ... and a Heart that is Gallant
I will get back into discord next week some time and drop you a line. I'm having upright trouble at the moment. Shoulders, ribs, spine. Have had a couple of horrendous short hospital stays this month. Yes ignorance is rife not just among lay people, medical professionals can be disgraceful (spoken as an exnurse too btw).
I haven't responded succinctly to this post, but @quillfire knows, I think, how hope and validation can be a vital life raft.
It is denial of effective pain management and disrespect, in the face of no treatment options that wears you away. I don't wish to make assumptions or unknowingly upset you, as I sense you have but scratched the surface, and I do not wish to open up scars that I know serve a vital purpose.
Scar tissue physical or emotional is stronger than skin that has never been maimed. It is immovable like armour entwined through the soul, but it needs to be, the tissue underneath is forever tender.
I found a chat / support / information thread called inspire.com very helpful. They have an EDS group that is quite active. Unlike the facebook groups it is well moderated and not prone to attack. It has been of help to me at times. The information shared is less opinionated and more evidence based.
Talk soon. Thank you again for reaching out.
My wife is in that group, you mentioned called inspire.com. Any time , take care.
There was so much I wanted to say yesterday @sultnpapper. Firstly, apologies regarding my misspelling of your name. I started steemit around the same time as @papa-pepper. He along with many other steemians were amazing supports to me and my family. The misspelling is a reflection of my frequent reference to him in endearment. People see his top rating and don't necessarily realise he is not your regular whale, he built his profile through work and consistent and genuine representation of himself. He has also given more back than anyone. I can personally testify to that.
We see a lot of posts about the elements of steemit that don't work so well, that represent the less desirable characteristics of human nature, but steemit also has taught me about the good in people. Trust, friendship and love that is real, more real than the fair-weathered folk that are in the physical world, but not real at all when it comes to the attributes that define true kinship.
I remember someone commenting on a post about @clayboyn, trying to figure out our connection. It was steemit. I've never met him, but like Paul here he has done more for me than most of our "family and friends."
My husband and I had been on steemit for around a year before he disclosed my illness and his struggle and perspective.
Clay was amazing. I upset him somewhat as I hadn't told him how bad things were, he was a force to be reckoned with regarding rallying support.
After my husband's post a remarkable outpouring of support came our way. From people we had gotten to know somewhat and from people who had never interacted with us"
I had been ill, and only commencing investigations into EDS, but something wasn't right. As much as google doctoring is frowned upon, as you know, there is little awareness out there. My sister learned of EDS through her own research, and I, while lying on the floor of my living room in Australia, after months of being sent away from emergency departments and unable to get up, my family stepping around me, I discovered a doctor at Stanford University who had uploaded a video to you tube connecting bendy people to an increased prevalence of cerebral spinal fluid leak due to leaking of the dura. My brain and c spine had been imaged a hand full of times, it wasn't a pretty sign, but it didn't explain the degree of pain and disability. So rather than question why and investigate further I was deemed a drug seeker and it was suggested I see a councilor.
After watching the Stanford doctors video however I decided I'd have my entire spine imaged. Not just leaks, but tears were found in my dura in the thoracic and lumbar regions. It makes your head and neck hurt like hell, but the problem was further down my spine.
We thought my issues would improve once my leaky brain was plugged, but the protracted period of time meant significant deconditioning. My previous exercise obsession had meant my muscles had been compensating for dodgy ligaments and tendons. The loss of muscle destabilised EVERYTHING. Believe it or not I thought subluxation was normal, and double jointedness a bit of a party trick. Dislocation however is no party.
But they said move, so I signed up for hydrotherapy / physio rehab, bought the rockingest granny frock bathers (several) and went of to rehab with 80 and 90 yr olds. The programmes were generic and geared towards stroke recovery and hip replacements. The admitting doctor knew nothing of my condition, made no attempt to find out, and happily utilized our limited insurance stating, we'll call it a back problem.
While being in the Water was nice, it exacerbated my pain terribly and left me exhausted, but I was trying to be a cooperative patient and do all I could to get moving. I was on extended leave from work, and the pressure was on to get it together.
I was going backwards. Every time I saw a doctor, whether they were well intended it not, every intervention further complicated and damaged an already poorly understood situation. The danger of being seriously harmed by unnecessary intervention or failure to appropriately treat is very real. Just a matter of weeks ago I had an experience still too raw to speak of objectively. It took my last piece of self, I think I told @quillfire that, and like a true friend he has rallied for me and reinflated my fragile ego.
Stories!
Like your cat chronicles, my husband grew up on The Adventures of Rodney The Rocking Horse. As told by his dad. He has attempted to have him write them down, but they flow verbally. They come to life in an impromptu moment. My husband has retold them to our children too. I know they are one of my husbands most treasured memories of childhood.
I can imagine your wife supplementing the truth of her absence to the children in the form of stories. I worked at a medium stay inpatient facility where most of my patients were young woman or adolescent. I got to know my patients very well. I would entertain with crazy antics in place of the truth regarding my growing absence from work.
Eventually after months of stubbornly holding on to my job on unpaid leave, I resigned. I loved that job.
Much of what I am experiencing now does not fit at all with any aspect of EDS. It scares me that it is dismissed as EDS. I feel the diagnosis has inhibited appropriate timely treatment.
No problem with the misspelling , Pappa Pepper is a great guy and I enjoy reading his stuff, truly a nice person.
My wife has the spinal fluid leaks as well, they come and go and are less frequent now than a few years ago now. We have seen that video on the Tube and came very close to contacting his office about the surgery for her. She says it taste like a "metallic taste" in her mouth, and sometimes it just pours from her nose when it is really a bad one. To the point that she can't even leave the house some times.
Sound like the recovery from the surgery is rough, if you had to do it over again would you?
She also has the severe neck pain as you describe and there are days she cannot hold her head up, I am sure you have experienced those as well.
This disease is a "catch 22" like you eluded too, muscle helps stabilize things but when you feel so bad that you can't exercise to build or keep muscle it all goes to hell in hand basket real quickly.
You haven't mentioned the stomach attacks by name but being on the floor in the emergency room tells me that you have had your share of those. When the oldest of our natural born children started developing symptoms the stomach attacks were the first ones. He would be fine one minute and on the floor in a ball the next just writhing in pain. At first we thought it was something he had eaten but we learned later that wasn't the case.
The problem with the kids is that they associate the stomach attacks to the last food they ate and then won't eat that food anymore since they associate it with the pain, he eats very few things now. Very little variety when it comes to food for him because we didn't know what we were dealing with. My wife is also a "picky" eater because she had gone through the same growing up.
With your concern about your condition being more than just EDS from what I know that isn't uncommon , my wife's legs are very unstable and she sometimes exhibits "drop foot" like MS patients have, but with MS once you have that condition it doesn't get better. Hers comes and goes but when it comes she literally dragging her left foot when she walks.
She needs a wheel chair sometimes and we have one but she knows that if she starts relying on it she may never get back out of it so she pushes on without it.
Our girls are our youngest and they both have major issues with dislocation of bones and joints because they are so thin and no real muscle to speak of, the youngest dislocates her lower ribs just rolling over while sleeping.
The girls know that this condition will be with them for life and they see their mother and her struggles along with their own so they won't even take aspirin to help with the pain because they want to save any medications for pain until they get older and "really need it" as Shortie says.
This disease is really misunderstood by the public, the public doesn't see a physical disability and so they think that kids with EDS are just faking. They see them out playing and running around one day and the next day they need a cane to help them walk without fear of falling. Well that good day running and playing is paid for the next day, the kids know it but they are willing to pay the price for some fun every once in while and I can't blame them. So we really don't care what the uniformed think, they couldn't walk a mile in these kids shoes.
I don't know if I mentioned it or not but my wife is on inspire.com as well and she mainly reads and makes very few comments but I will find out from her name she uses on there and pass it on to you when we make contact on discord in a PM she may want to ask you more about the surgery for the leaks.
Take care and thanks for sharing information in a public space like this. You are on my prayer list and I encourage anyone else who is reading any of this to do so as well, because I see what you are going through even though we are on opposite sides of the world.
Much love, I've been pretty busy and involved in a lot of projects, but I still think about you guys and hope you are doing well. <3
@girlbeforemirror,
It's not the dog in the fight, it's the fight in the dog.
You've got a brain, presumably you were intended to use it. Keep Googling whether they like it or not. The doctors are not gods and you read English as well as they do.
Be a bitch when necessary.
Quill