You are viewing a single comment's thread from:
RE: @Girlbeforemirror: A Tribute to Astonishing Talent ... and a Heart that is Gallant
Wow.
Thank you for sharing your experience, mate. Before meeting Marg, I'd never even heard of Ehlers-Danlose. Four people, in one home, dealing with this condition ... honestly, when I read that, it stopped me from breathing for a moment. Your wife and your children ... that's a heavy load.
Your voice is always welcome on my blog and, I'm sure, on Marg's as well. It's nice to have made your acquaintance, sir. I've Followed.
Quill
My wife had all the symptoms her whole life and her doctors knew she had a problem but could never put a finger on it, luckily the kids pediatrician knew of it and as the kids starting developing the symptoms he was spot on , it is relatively unknown to most of the public. That doesn't make it any less severe though to people who have it.
The Baylor College of Medicine in Houston is currently doing genetic studies on the disease and our entire family is a part of that study group so maybe they will be able to shed some light on the causes and possibly that might lead to cure someday.
Thanks for the invite and the follow. I am not really a poetry guy or a writer so don't look for much from me in any poetic form but I will be sure to visit from time too time.
@sultnpapper,
Baylor, huh? The world of genetics is exploding with research, of one kind or another, so let's hope someone generates a bit of insight. My daughter will be studying biomedical research when she enters university next year. She's spent the last seven years researching Alzheimer's Disease (when my Mom was diagnosed, we converted our dining room into a laboratory). The only thing either of us receives for birthday and Christmas presents is lab equipment. You know you've become a nerd when you cry tears of joy over receiving a new centrifuge. All it takes is one smart cookie. It's hard, but have hope.
I always attach an article to my poems which cover a wide variety of subjects. And, I also create a fair number of articles with no poetry at all, like my ongoing series about How To Fix Steemit. In any event, I'd be happy to hear your thoughts about whatever, whenever.
Quill
Yes, Baylor College of Medicine in Houston is doing a study, not sure who many families are involved but we all had blood drawn so they could study the DNA and try to find something that stands out that might point research to explore. It has been about four years now and when they took the blood samples they said it could be as long as seven years before we would hear anything about the study results.
That is quite a story of your own and Alzheimer research you and your daughter have going on, I wish her and you well in that.
@sultnpapper,
I love the fact that you and Marg are riffing. There's nothing like the experience itself. The rest of us, unwittingly, are simply too ignorant to contribute much beyond moral support. How could we not be? EDS is rare. But you guys know all the nuances and I'm glad you've found each other. This alone was worth the post.
Respecting Alzheimer's, my daughter plans, someday, to start blogging on Steemit about our experiments and the compounds we've formulated. It's a Herculean task though. To reduce it all to everyday language ... not easy. Her teachers have no idea what she's talking about.
And, she's really busy. There are several universities in a bidding war to get her to attend. One has offered her a Free Ride (tuition, books, room & board) and a very substantial research budget (to use as she likes) ... even as a freshman! To keep the bidders bidding, though, she's got to keep her grades up ... and, at her level, that means 95%+ in nothing but Advanced (by several years) Classes.
As you can tell, I am a ferociously proud father. My daughter says it's not classy for me to brag about her. She's right, but I can't help myself. And, since she's not here to stop me ...
Quill
They are called "bragging rights" for a reason, so use them by all means. You should be very proud as I am sure you are.
@sultnpepper,
I want to find the right words and am struggling at the moment, so please forgive me if I ramble. I have not mentioned this too much as I speak very little on line about my kids specifically. But I feel I must respond to you sharing your story, and also encourage you to make contact with my partner @azurejasper, as I believe you find yourselves similarly placed, and he I think feels very alone and a huge burden of responsibility. Both of my children too have been assessed as having EDS. This makes my need to improve, in my health and as a role model so important to me. My own burden of guilt is immense. I hope that my experience and learning and their early diagnosis makes for improved outcomes for them.
I would like to read your wifes cat series, are they published?
By day my view is one from a balcony window, from it I see paperbark eucalypts (similar to your tree @quillfire but without the rainbow), and the resident Currawongs (native Australian bird). I am also visited by Ravens, the occasional kookaburra and a cranky brush tail possum.
We are trying to move to a place where we will have room for a dog, my children have named it already, and more specifically be closer to my mother who currently travels hours to help me.
Australian property is incredibly inflated. Living in Sydney has become impossible for us. We had intended to move quite some time ago, but I'm sure I don't need to explain to you @sultnpepper how even the simplest of tasks can feel monumental.
Thank you for sharing your personal experience, I am following you but too be honest I don't scroll around much as it flares up ... everything.
Don't be a stranger, and feel free to drop a link on a post, I miss a lot of good content on steemit.
gb4m
PS I love the way you format your posts, I might have to steel your style.
@girlbeforemirror,
Marg, I was wondering about your children. Genes go both directions.
You know you can't do that. You're not a god. This was not your decision to make.
You're as good a role model as anyone I ever met. Your husband must be quite the rock as well. If he ever wants to chat, tell him to look me up on DM.
Quill
@girlbeforemirror it is my pleasure to make your acquaintance. My wife never had her Cat in the Mirror stories published, she barely even wrote them down. We owned a day care center for 12 years and when her flair ups kept her at home the cat would keep her company sitting on the dresser and looking at the mirror so she started talking to the cat about what the cat saw in the mirror and when she would go back to work the kids would ask her why she wasn't there and so she would tell them that she had to stay home and visit with the cat in the mirror. That is how it started, naturally the kids wanted to know more about that cat so she would tell them making it up on the fly and then one story led to another and another and then they would want the first story told again and then the cycle repeated itself. So it got where she had about a dozen cat in the mirror stories she was telling the kids, all from memory. She finally did write some of them down but I am not sure she even knows where that note book is.
I know what your partner is going through and I feel for you, him and your children. Most people can't comprehend that EDS is as severe as it is because there aren't any obvious signs unless you are very familiar with it and most people aren't familiar, most have never heard of it. EDS folks look perfectly healthy for the most part but under the skin lays a bunch of problems with the connective tissues and that can't been seen by eyes so some people just never get that EDS is serious stuff.
Some day the kids can run and play outside like any other kids and other days they cant walk without holding on to something or without using a cane for stability. Ankles and knees pop out of joint all the time as I am sure you are aware from just normal walking so it boggles people's minds.
Now I am the one rambling, I never have had the opportunity to talk to someone other than family members who have it so I really feel awkward trying to explain what you know better than me because you live it. I am on discord as sultnpapper #8612 why don't you hit me up over there with a DM some time and we can carry a conversation there? Share that with @azurejasper as well, I am sure we have a lot in common we could visit about too.
There is no need to feel guilty EDS isn't something you fooled around and caught so you have nothing to feel guilty for.
It is "papper" with an "a" not an "e" by the way, and don't feel bad about that, people make that mistake all the time.
I look forward to hearing from both of you. Adios.
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.