Recently I learned of a teenaged girl who is in the middle of a custody battle. The battle is not between her parents but between Boston's Children's Hospital and her parents. Justina and her family live in CT. She was diagnosed at Tuffs University Hospital with a rare genetic syndrome. Justina's parents took her to Boston Children's Hospital for treatment. In February of 2013 DCF of Mass took custody of Justina. . Justina's parents took her to Boston Children's Hospital for treatment. Instead doctors there over ruled Tuff's diagnosis and diagnosed Justina with a psychiatric disorder. She was locked up in the psychiatric unit in spite of the fact that she was there to be treated for this genetic disorder.
This tuesday, the judge awarded permanent custody to DCF of Mass. In his four page decision, Judge Johnson faulted the CT's child protective agency for it's failure to get involved. He wrote that Justina's parents of having haphazard decision making regarding their daughter's care.
How would you react if your 15 year old daughter was diagnosed with a rare genetic syndrome? You would seek treatment. That is exactly what Justina's parents did when going to Boston's Children's Hospital. How would you feel if your daughter was diagnosed as having a psychiatric illness rather than a physical illness? As someone with CRPS, I have heard over and over again that my CRPS is all in my head or there is no such thing as CRPS. I was angry.
If my teen had a rare illness and was then told that her symptoms were made up; I too would be furious. How would you feel of your child was taken from you and given to DCF and locked in a psych unit getting no medical treatment? How would you feel if your daughter went a year without a court appointment advocate (Gardian ad Litem or GAL)? I know that I would be furious. I would do everything in my power to fight to get my daughter back to Tuffs and get treatment for her medical condition. This is exactly what Justina's parents are doing.
How can you help?
Learn more about this case
www.bostonglobe.com/lifestyle/health-wellness/2014/permanent-custody-justina-pelletier-awarded-state-massachusetts/puyPhesGkKE6GLid2VM2L/story,html
Go to www.justiceforjustina.com
Sign a petition:
https://petitions.whitehouse.gov/petition/we-petition-doj-criminal-investitation-boston-chidrens-and-massachusetts-dcf-abusing-justina/jgdThjc
I can not understand why DCF of Mass sees it as their duty to take custody of Justina when her home state Conn and Tuffs University Hospital do not see this situation as child abuse. What gives Mass the right to limit contact between Justina and her parents. To have supervised visits fearing that her parents would discuss things that DCF deems inappropriate.
Help Justina get the medical treatment that she needs and has been suspended for over 13 months. Get involved. This could just as well be your teenaged child.
Thank you Sue Pinkham for bringing this to my attention. As a former pediatric nurse and as a GAL in FL; this situation infuriates me. We all need to help Justina get the treatment that she needs and reunite her with her parents.
Thursday, March 27, 2014
Friday, March 21, 2014
Wednesday, March 12, 2014
First Birthday
A year ago at 8:25 p.m. the most amazing person came in to this world. Although his birth was not what we anticipated, he could't have been loved more. I have watched Kim and Bennett evolve from a couple to a family. At first Kim would ask Ian if he wanted to go to Bennett. As the days passed, Bennett was daddy and Kim was mommy. The normal sleepless nights have been handled with grace. There couldn't be any two people more dedicated to being sure that Ian is a healthy happy baby.
This year went by so quickly. I go back and forth from Orlando being a wife to DC where I am grammy. It is so rewarding seeing that big smile and his face light up when I come to visit. Being a grammy with CRPS has it's challenges. Challenges and all, it has been a great year as Ian's grammy
This year went by so quickly. I go back and forth from Orlando being a wife to DC where I am grammy. It is so rewarding seeing that big smile and his face light up when I come to visit. Being a grammy with CRPS has it's challenges. Challenges and all, it has been a great year as Ian's grammy
Sad Day
Yesterday I resigned from Ketamine Klub. There was too much stress and bullying. K Klub has gotten too crazy with people worrying about who is friends with whom. Although I will miss my friends in K Klub; I can no longer be involved. This has me sand and depressed.
Friday, February 28, 2014
Annniversaries
Next week marks the 18th anniversary of the injury that caused my CRPS. Last year at this time, it didn't even pop into my mind as we were waiting for Ian to be born. I was feeling so positive and all was going well. Even the past years, this anniversary did not cause me to stop and rethink what I was doing. This year is different. I am questioning everything.
There is so much going on within the CRPS community that saddens me and sickens me. We have lost so many CRPS warriors in the past 12 months. Was there something that we as a community could have done to prevent them from taking their lives? Is there something we can do in the future other than continuing to post suicide prevention hotlines?
We have seen attack after attack between one "organization" and another as well as within organizations. I do not understand why this drama is necessary. Why can we not all do what it is that we do best whether it be awareness, research, or funding treatments? Why is it that their is a need to compete with one another. We all have the good of the CRPS community in mind.
As people with CRPS we all have slightly different symptoms and respond to different treatments. We have so few physicians treating the CRPS community. Why are we arguing over who prescribes what to whom? I have voluntarily been involved in multiple medication studies over the years. How do we know what treatment will work unless we study it?
I do my best to try to help those who need information, referrals and financial assistance to get treatment. I get so frustrated that I have to walk on pins and needles, worry about personal attacks and worse yet, personal attacks on those who I am trying to help.
What can we do to get everyone to work towards a common goal? I guess I am just naive to think this is possible.
There is so much going on within the CRPS community that saddens me and sickens me. We have lost so many CRPS warriors in the past 12 months. Was there something that we as a community could have done to prevent them from taking their lives? Is there something we can do in the future other than continuing to post suicide prevention hotlines?
We have seen attack after attack between one "organization" and another as well as within organizations. I do not understand why this drama is necessary. Why can we not all do what it is that we do best whether it be awareness, research, or funding treatments? Why is it that their is a need to compete with one another. We all have the good of the CRPS community in mind.
As people with CRPS we all have slightly different symptoms and respond to different treatments. We have so few physicians treating the CRPS community. Why are we arguing over who prescribes what to whom? I have voluntarily been involved in multiple medication studies over the years. How do we know what treatment will work unless we study it?
I do my best to try to help those who need information, referrals and financial assistance to get treatment. I get so frustrated that I have to walk on pins and needles, worry about personal attacks and worse yet, personal attacks on those who I am trying to help.
What can we do to get everyone to work towards a common goal? I guess I am just naive to think this is possible.
Friday, February 21, 2014
CRPS: The Suicide Disease
In a few days, it will be the 18th anniversary of the accident that caused my CRPS. Over the years, I have talked to hundreds and hundreds of people. My doctor's office had me talk to people going for the coma ketamine treatment. Then I was a pain mentor with RSDHope and currently I am a pain ambassador for US Pain Foundation and run a support group on Facebook.
In my 18 years, I have not seen as many suicides as I have in the last 12 months. Some I met in person others I only knew via Facebook. I understand depression. I've been their. I understand the pain both physical and emotional that this disease inflicts on us. I do not judge these people who could not take it any longer. That is not my place. What bothers me is that people are using these tragedies to voice their own agenda. These families are hurting, Suicide is very hard for the ones who are left behind.
I will miss these CRPS Angels. I will speak to the families that reach out to me but I will not engage people who are using these tragedies to voice their own agenda. I'm sure that these people are passionate about their agenda. There is no evidence to back it up. The people I knew who took their own lives did not take this medication so it can not be the cause of their death.
RIP
Carla
Janet
Julie
John
Thomas
Leslie
You are no longer in pain. Our thoughts and prayers go out to your families. Your loved one is no longer in pain.
In my 18 years, I have not seen as many suicides as I have in the last 12 months. Some I met in person others I only knew via Facebook. I understand depression. I've been their. I understand the pain both physical and emotional that this disease inflicts on us. I do not judge these people who could not take it any longer. That is not my place. What bothers me is that people are using these tragedies to voice their own agenda. These families are hurting, Suicide is very hard for the ones who are left behind.
I will miss these CRPS Angels. I will speak to the families that reach out to me but I will not engage people who are using these tragedies to voice their own agenda. I'm sure that these people are passionate about their agenda. There is no evidence to back it up. The people I knew who took their own lives did not take this medication so it can not be the cause of their death.
RIP
Carla
Janet
Julie
John
Thomas
Leslie
You are no longer in pain. Our thoughts and prayers go out to your families. Your loved one is no longer in pain.
Saturday, February 8, 2014
Harmony
This month has had it ups and downs and we are just over a week into it. CRPS Partners In Pain was able to send one RSDer to a top notch doctor for a pain consultation. Tomorrow another is going to Clearwater for ketamine. While we are in the midst of doing what we feel is important work; there have been attacks on three of our board members.
First there was the WEGO Health Activist Awards. One of our ketamine klub members nominated me last year. Endorsements ended January 31. When some of our members looked at the judging process, they found that nominees in one category can be judges in another. When ketamine klub at large heard this, they began writing letters to WEGO in protest. Naturally the people who have been harassing us for several years, assumed that I was behind it. Well you know what happens when people ass-ume. I wrote to WEGO and asked them to remove my name from the nominees. I never heard back.
I do not want there to be discord within the RSD/CRPS community. In an ideal world we would all work together. If someone I speak to needs a service that CRPS PIP can't provide, I would like to be able to refer them to another group that can help them. If someone else speaks to someone with CRPS and their needs fit better with our business plan and philosophy then I would hope that they would send them our way. Unfortunately, this isn't happening. It is a great disservice to the CRPS community that we can't always get along.
Facebook has me frustrated even more. To run a Facebook group, you need to be able to message and friend perspective members. Evidentially Facebook has other ideas. Once again I'm in Facebook "jail" unable to friend or message people who are not on my friends list. We have often thought of taking the group off of Facebook but the decisive feelings of our members is that they don't want to have to go to multiple places for multiple groups. Only 6 weeks into the new year and I'm already in jail for 7 days. Grrr
CRPS PIP has some exciting events coming up. This fall we are going to do a 5K walk/run. Miss DE will be handing out metals. Her platform for the Miss USA competition is CRPS. How great is that?? We will also be having a silent auction with some gorgeous stain glass items, water color prints, etc. We have set a goal of raising $8,500 per quarter. In January we met our goal of $2,100. I'm hoping that we will be able to do as well this month.
On a personal note; Ian will be 11 months next week. Where did the time go? He is the most amazing little guy in the world (ok I'm prejudiced)
First there was the WEGO Health Activist Awards. One of our ketamine klub members nominated me last year. Endorsements ended January 31. When some of our members looked at the judging process, they found that nominees in one category can be judges in another. When ketamine klub at large heard this, they began writing letters to WEGO in protest. Naturally the people who have been harassing us for several years, assumed that I was behind it. Well you know what happens when people ass-ume. I wrote to WEGO and asked them to remove my name from the nominees. I never heard back.
I do not want there to be discord within the RSD/CRPS community. In an ideal world we would all work together. If someone I speak to needs a service that CRPS PIP can't provide, I would like to be able to refer them to another group that can help them. If someone else speaks to someone with CRPS and their needs fit better with our business plan and philosophy then I would hope that they would send them our way. Unfortunately, this isn't happening. It is a great disservice to the CRPS community that we can't always get along.
Facebook has me frustrated even more. To run a Facebook group, you need to be able to message and friend perspective members. Evidentially Facebook has other ideas. Once again I'm in Facebook "jail" unable to friend or message people who are not on my friends list. We have often thought of taking the group off of Facebook but the decisive feelings of our members is that they don't want to have to go to multiple places for multiple groups. Only 6 weeks into the new year and I'm already in jail for 7 days. Grrr
CRPS PIP has some exciting events coming up. This fall we are going to do a 5K walk/run. Miss DE will be handing out metals. Her platform for the Miss USA competition is CRPS. How great is that?? We will also be having a silent auction with some gorgeous stain glass items, water color prints, etc. We have set a goal of raising $8,500 per quarter. In January we met our goal of $2,100. I'm hoping that we will be able to do as well this month.
On a personal note; Ian will be 11 months next week. Where did the time go? He is the most amazing little guy in the world (ok I'm prejudiced)
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