"Suffering the Slings and Arrows of Outrageous Fortune"

Posts tagged ‘mito’

Rare Disease Day 2016

 

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Today is Rare Disease Day, with a focus on Making the Voice of Rare Diseases Heard.

Usually, I write a post on the theme because I feel strongly about this. Ironically, I am feeling overwhelmed by actually living with our allotment of rare diseases and just don’t have the brain power to write something brilliant.

I can share some links that will help you share some awareness on social media. Use your platform to share information because giving a voice to this cause is important. Make your voice heard and support the Rare Disease Community!

 

Rare Disease Day

 

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What are you doing to promote awareness today? Leave a comment and share!

 

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Need your help again…

You may remember me talking about a project Emily and I are working on – we are writing a book and hoping to get it published. I had sort of intended to have it ready and submitted a year ago but, well, that didn’t quite happen. It has been mostly written for almost a year, but I got sidetracked: the story of my life.

Anyway, we are back to seriously working on finishing… Emily is writing her portion (which may have been a large part of the delay) as I continue to remind her that this is formal writing which needs to be a notch (or two or ten) higher than her blog or other conversations. She is doing a good job, although I am slightly regretting telling her that I expected ‘real’ and ‘honest’ and not the sanitized version from her. I am thinking I should have requested sanitized and worked backwards…

On a serious note, this is a big deal and a fairly emotional undertaking for her so I am pleased that she is giving it a serious go. While she works on her part (basically, a short essay to accompany each chapter) I am working on our book proposal which will be submitted to agents in due time. The book proposal is nearly as complicated as writing the book itself, so it is no small task. I know we are not unique among authors who are convinced their book should be published, but, you and I both know that the EDS/ chronic illness community can always use another book that offers encouragement and hope. So, I am going to naively carry on believing that we will be published and hopefully my positivity will pay off. 🙂

I asked for help from my readers when I first got started writing and I am going to ask again:

rainbow scroll 2First, I would love it if you would comment with the title of any books on the topic of living with chronic illness or suffering or any topic that would be helpful to living  well with chronic illness that have helped you and you can personally recommend. This can be as a parent who has an ill child, a teenager who is ill, or an adult who is ill. I have a pretty substantial list of books, either that I have read or that have been recommended to me but I don’t want to miss any! So, tell me: What books are your go-to selections for encouragement, help, guidance in your life with chronic illness? What book would you give to a friend who was starting a journey with chronic illness?

rainbow scroll 2Second, I am including thoughts, comments, experiences of other teenagers who live with chronic illness. I have several people who have already contributed but have room for a few more. So, if you are, say, are a teenager up to mid-twenties and are interested in answering a few questions so I can include some of your thoughts into my book, let me know. Since the book is applicable for any chronic illness and not just EDS, I especially would like thoughts from other conditions: asthma, depression, anxiety, diabetes, Chiari – any chronic illness, really. I especially need the perspective of young men, as their experience may be a little different than girls. Comment below or contact me via the link in the sidebar.

rainbow scroll 2Third, please take a moment to hop over to this post and answer a couple questions in the poll. Part of the book proposal is research on why my book will sell. So, share your thoughts via the poll so I can have a few statistics on why this book is needed and a head start on future projects. If you have a comment to share about why a book such as this would be helpful, feel free to share it below.

I appreciate your help and am looking forward to hearing from you!

 

Please Take This Poll

As I mentioned in my previous post, my daughter and I are writing a faith based book that we are hoping to have published. This book focuses on mostly the emotional aspects of living with chronic illness, although some practical advise is shared. It is aimed at chronic illness in general and not only EDS.

We are in the final stages of getting the book ready to submit and I am doing a bit of research that you can help me with. (I have a few future projects in mind as well, including a companion journal that could accompany our current project. This journal would include recommended reading (by me), inspiring/encouraging songs (recommended by Em), and activities/exercises that expand on the topics covered in the book.)

All you need to do is take a moment and answer the questions in this poll if you are affected by chronic illness. The more responses I get, the better!

Thanks in advance!

Check all that apply:

 

Making Sense of #FreeJustina Part 1

Now that Justina is home, reunited with her family, friends and pets, I am looking back over the whole sad saga of her 16 month imprisonment.

 

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I have already asked What was the Point? in a previous post and, while I don’t necessarily want to just rehash that sentiment, I am still incredibly frustrated that there is no good answer to that question. Furthermore, Justina’s situation today is essentially the same as it was when she was taken by ambulance to Boston Children’s Hospital on February 10, 2013:

She is ill. Dr. Korson, at Tufts, is her doctor. Her parents have custody of her.

What improved for Justina over the course of the past 16 months?

Nothing at all, as far as I can see. The somatoform diagnosis has apparently been tossed aside and everyone now agrees that her symptoms are from her mitochondrial disease. Her parents, although doing nothing really different today than they were 3 months ago when Judge Johnston wrote his scathing ruling accusing them of cursing, name calling, threatening, and generally being ‘difficult’ to get along with and therefore not qualified to have custody of their youngest daughter, now have been deemed qualified by the judge to have custody of Justina. I shouldn’t complain since she is home, but, I can’t help but think: What???

Let’s see: 16 months ago the Pelletiers said Justina had Mito. They wanted her own doctors – Flores and Korson – to provide her care. Flores happened to be at BCH but when the disagreement arose,  Tufts was where Lou and Linda wanted to take Justina. The Pelletiers said every medical intervention done to Justina was needed and that they were not abusing her in any way, so there was no reason for MA DCF to take custody. They said they would sue everybody who was involved in the medical kidnapping of their daughter.

Today, their position is precisely the same as it was when all his started. They broke the gag order and have never shut up; the media attention on Justina has only grown since November when Lou spoke to Glenn Beck.

So, what changed that made it possible for Justina to go home?

DCF, for starters. They were dragged into this mess by Boston Children’s Hospital – certainly not kicking and screaming, but willingly and because of their own negligence, so they do not get a pass on their own culpability, but they have at least had the sense to allow it to end.  Hopefully, they will think twice before ever doing this to another child – I hope and pray, that when faced with a similar situation in the future, the nasty burn they got from holding on to Justina is still very painful.

The controversy and media storm was never, ever going to go away; not until Justina went home and DCF was out of the lives of the Pelletier family. Somebody had to blink and, while conventional wisdom would say DCF was the party with the power, the Pelletiers were never, ever going to be the ones to blink. So, somebody had to resolve it. Secretary Polanowicz at HHS intervened in such a way to bring it to a close. I would say he had to set it up to look like the Pelletiers were giving in, when in reality it was DCF who was giving in. Bless him for doing so, but, it never, ever should have taken 16 months to resolve this. Period.

Today, the joy I feel as I watched Justina return home, to her loving family and adoring dogs, is tainted a bit by anger. I look back over the months that Justina was isolated and removed from life as she knew it…for no reason. Everything she knew and loved and held dear was taken from her…for no reason. Her voice was silenced, her wishes and independence and autonomy squashed;  her development and health imperiled… FOR NO REASON.

They said it was for her own good, but how can that be the case when nothing at all has changed from the time they took her? I look back and just see the seconds ticking into minutes, the minutes into days, the days into weeks, the weeks into months and the months into more than a year… as the tears and the longing and loneliness and fear and rage went on and on.

Why can’t I just be grateful that she is home?

For any human being, our greatest treasure on earth is time, for it is with the time we are given that we live. We manage our time, know that time is money and regret wasted time because we keenly understand that time lost cannot be found again. We bless others with our time – it is a manifestation of love and value and esteem. We cherish our time with loved ones who have their own finite resource of moments on this earth, because really, in the end, time is all we have. For people with chronic, rare, debilitating and progressive conditions, time is everything. At this time of celebration, I cannot help but grieve the unforgivable amount of time that was stolen from Justina. Her release is bittersweet to say the least…

So much has been taken, forcefully and wrongly, from this brave young lady but it is the time that was stolen, wasted, and callously tossed aside that is an irrevocable loss: the  16 months – 489 days – of her life that have been stolen by the powers-that-be are utterly irreplaceable. Nothing and no one can return her lost time with her elderly grandmother, with her sisters, with her parents, with her friends, with her pets.

Where do we go from here?

It is infuriating to think of this crime being swept away as if it were nothing because the DCF finally caved and because the Judge deigned to sign the order allowing her to go home: “Golly, Justina. Looks like we made a mistake. Ha Ha! Sorry about that! You weren’t crazy after all… well, have a good life!” Despicable doesn’t begin to describe this…

16 months ago, Lou and Linda weren’t allowed to get a second opinion from Tufts because Dr. Korson had ‘allowed’ himself to be hoodwinked by Linda into providing unnecessary medical treatment, but the court ordered Justina’s care be returned to Tufts and Korson, tacitly admitting BCH screwed up.

Lou and Linda were steadfast in saying they had done nothing wrong, that their daughter belonged with them and, after 16 months of disagreement,  the court agreed – at least that Justina belonged with them and the lack of criminal charges certainly lends credence to the idea that they are not just ‘not guilty’ but innocent.

They were devastated that their visitation was limited to one supervised hour per week. But, the court cited their visiting Justina everyday at the placement in CT as evidence of them cooperating…As if they wouldn’t have visited her every single day for the previous 15 months if they had been allowed? Who’s fault was it Justina didn’t see her parents everyday!

After 16 months, the case against the Pelletiers has been dropped and Justina was sent home with no strings attached.

I am overjoyed that Justina is home but the insanity and pointlessness of the past 16 months could just make my head explode….if wasn’t able to see the good that will come from this. Thank God, there is good coming from Justina’s suffering because I really need it to mean something...I will talk about that in Part 2.

Home #JustinaisFree

As they say, a picture is worth a thousand words…  On a day such as this, a million of my words could never do justice to the joy and relief felt by the Pelletier family. Perhaps tomorrow I will try to find the words to sum up this whole saga, but today I just don’t have the words. So, here are a few pictures worth many thousand words to describe a day we have all been waiting so anxiously for:

A ‘Welcome Home’ sign written in chalk on Justina’s street

 

 

 

Lou carrying Justina into her house upon her release.

 

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“It’s crazy to be home.” Justina Pelletier

 

 

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*Pictures from Rev. Mahoney @Revmahoney and Beau Berman @BeauBermanFOXCT via Twitter

Finally #JustinaisFree

Justina is going home. The judge has finally released her and she is going home. After 16 long months in the custody of Massachusetts DCF, Justina will finally be sleeping in her own bed come Wednesday night.

 

I usually have words, words and more words… But, today, all I can think is ‘thank God she is finally going home!’

Rev. Patrick Mahoney ‏@revmahoney Why is Justina smiling so big! She just found out she’s going home tomorrow!!! Details to come! #justinaisfreed pic.twitter.com/ZbERlaQmfs

The Saving of Many Lives #FreeJustina

For anyone familiar with the Justina Pelletier case, things are happening – hopeful things.

I am a believer: I believe in the promise of Romans 8:28, that God works in all things to bring about good. And I stand confidently on the promise stated by Joseph in Genesis 50:20: “You  intended to harm me, but God intended it for good to accomplish what is now being done, the saving of many lives.” Justina’s experience, and that of the other children who lived the same nightmare on Boston Children’s Hospital’s Bader 5, will lead to the saving of many lives, mark my words.

Last week, a suit was filed on behalf of a girl who had her working diagnosis ignored in favor of a somatic disorder and was confined for more than a year on Bader 5 against her parents wishes. The parents were threatened with losing their daughter if they did not cooperate, so they cooperated (under severe threat, so absolutely no judgement here) while their daughter was subjected to isolation, restraints, and lack of proper medical care for her real medical condition as her health severely deteriorated.

No, that girl is not Justina, but the cases sound remarkably similar, don’t they? The major differences I can see are  that A) the young lady at the heart of this suit was eventually discharged (read: tossed aside) when her condition deteriorated so badly she was not making any progress, while Justina is still in custody of DCF and B) the parents of this girl cooperated as opposed to fighting DCF like the Pelletiers. The latter seems to explain why she was tossed aside when they were done with her and Justina remains in custody. For anyone who wants to criticize the Pelletiers, this case obviously shows that NOT fighting is not a great solution either.

This federal suit is accusing DCF of doing the bidding of doctors at BCH instead of properly investigating the medical child abuse allegations. The MA Attorney General, Martha Coakley is also named in the suit. With any luck, Bader 5 and the administration of BCH will have some questions to answer so they can change the policies that allowed this to happen in the first place.

“The basic request is for a federal court to apply the constitution to say parents have the right to take care of their children without 
undue interference from a state agency,” said Barry Pollack, the lawyer who is representing the family. The suit states: “DCF has not established any rules or regulations concerning ‘medical child abuse’ or ‘doctor shopping’ but has taken action against parents, such as the mother and father, for consulting with and seeking care for their children from multiple doctors or specialists at different facilities” and goes on to name names of the infamous Bader 5’s staff.

This is very, very good news for all children who may need the services of Boston Children’s Hospital and for the parents who walk through the doors with the knowledge that they are one doctor away from losing their child. This suit shines a light directly on the scary and subjective category of medical child abuse. DCF, in Massachusetts and elsewhere, must define the term clearly and balance the rare cases of such behavior that might put children in jeopardy with the many, many cases of kids who have rare diseases and whose parents are just trying to provide the best care possible. They need to come up with clear rules to deal with the subjective labels of ‘doctor shopping’ and all of the other red flags that get parents into a mess at BCH: this suit is forcing their hand.

While they are at it, they could come up with some ideas for parents who fall into some gray area of obviously not abusing their child but who could benefit from genuine support in the face of the extraordinary challenges families living with rare diseases face. And, since we are making changes, let’s just rework the whole definition of psychosomatic illness in the DSM V. (I know, that one is a pipe dream but a gal can dream, can’t she?)

It all boils down to this: DCF needs rebuilt from the ground up and this suit will help ensure protections for kids with rare diseases are part of the new framework.

Back to Bader 5 for a minute, here is a pretty damning letter from Barry Pollack regarding Bader 5 – he unequivocally says it needs to be shut down, referring to the fact that the ‘anti-parent approach at Bader 5 fails to respect the time-honored importance of the parental relationship, at the expense of children and families’ and stating that ‘Children in Bader 5 can be blocked from the outside world and even at times daylight. For those children, like all victimized children, an important step in recovery can be an acknowledgement of wrongdoing by an institution that has failed them. Bader 5 has clearly failed and hurt many of its patients and their families.’

As for Justina, thankfully she is no longer incarcerated on Bader 5. We are very hopeful she is going home soon. This past Friday, lawyers for the family filed a motion for Justina to be released since the requirements of the reunification plan have all been met and on Monday the family spokesman met with Health and Human Services Secretary Polanowicz, who stated his people were looking into their own motion to release Justina asap. Furthermore, DCF has now stated publicly that they will not object to the motion filed by the family and ‘shortly’ will  file asking the judge to dismiss the case. We will just assume when they say ‘shortly’ that it means what we take it to mean and that Justina will be sleeping in her own bed before the scheduled June 20th court date.

I previously asked “What was the Point?” and I stand by my firm belief that Justina and her family were wronged. Heinously wronged. This whole situation is wrong in every possible way.

However, the flip side of that is that there will be good brought of the wrong that has been done. Changes are coming, probably in different venues, in different ways – this law suit will force needed change upon DCF,  there will be some version of Justina’s Law down the road and there will undoubtedly be other changes in various places. But the bottom line is that Justina (and Elizabeth Wray and this nameless child who Barry Pollack is seeking justice for and all of the other unnamed children who have suffered on Bader 5) will have not suffered for no reason: reform will come and it will change business as usual at DCF and BCH. What was meant for evil is being taken and used for good. God bless each of the children who have suffered at the hands of the arrogant doctors at BCH and from the appalling misbehavior of DCF.

 

Here is a Boston Herald article about the suit

Here is a blog post about the suit and Bader 5

 

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