Reflections Of…

Posted by twinklev

The last week has been a bit overwhelming and my previous post somewhat confrontational. That is not the image I want left etched in the minds of my readers, followers or the communities in which I’m involved. I do not belong to a single community, but several. Contrary to what has suddenly become popular belief I am not hateful, bitter or spiteful. I have never in my lifetime been out to hurt anyone, I have only ever helped others. Before the injury which led to my CRPS I took care of children that weren’t my own, one had no blood relation to me or my children, other’s were by blood and did not include my own. I breast-fed a child that wasn’t mine because her own mother couldn’t and the baby couldn’t take any type of formula. I saved that baby’s life. I had happened to just give birth to my second daughter 2 weeks before and so was able to be a surrogate for her.

I cared for 2 dying people. I literally closed one of their eyes upon passing. I was not even old enough to really be put in the position to, but I was and I did.

I’ve lived a life of service.

Before I entered the CRPS Community, I was a controversial writer, reporter, small time. Published in various areas of writing, soft erotica, dance, poetry, I owned a small publishing business for a time on top of a 60 hour work week working for someone else and I was still busy doing for other’s.

I’m not here to sugar coat anything. And especially not from the last few days.

I’ve had attempts to add me to friends lists with names such Nancy Drew (Hardy Boy’s Nancy Drew Mysteries, remember those days?) I had a Mary Mack on my list that I didn’t realize was there (Mary Mack Mack Mack all dressed in black black black with silver buttons buttons buttons all down her back back back, remember the old kids clapping game?) and several other fictitious play names have tried to add me My support group has an influx of people attempting to join. I’ve had pages go up about me, one taken down, I’ve been called awful names, I’ve been told I’m going to be sued, I’ve been apologized to, and told if the person knew my name they would address me by it. I didn’t understand this all day yesterday because the person was messaging me to my name. Then I realized she must think I’m using a nick name. So many of them do. It was assumed I was also.

I’ve been kicked out of what I will call a group to give it anonymity., I will not mention the name and if asked I will not tell you. I honestly do not know if it’s common knowledge or not. All those involved were removed from what I understand. It did seem a little odd for me as I had not posted there at all. I cannot let it hurt me, anymore. I admit that it did! Very much so! I have no animosity toward the administration for their decision.

While many are very upset with me, I do not have any regrets in regards to letting everyone know that the information I posted in the comment section of the previous post was truthful and accurate.

My only regret if it’s even a regret at all is that when push came to shove I shoved back with a vengeance.

Would I do what I did again? I’m not sorry to say, yes! Yes I would! I don’t need popular to survive, I only need to survive. I am not just a CRPS survivor, no….

I am simply a survivor!

My life has shown me that from the very beginning in all it’s let me see and feel for myself.

I wish you all pain eased days and nights,

Proof of my name is included.

~Twinkle VanFleet

RSD Patient Seeks Community Support

Posted by twinklev

In a telephone interview yesterday May 14, 2013 a Reflex Sympathetic Dystrophy patient stated she has temporarily lost custody of her 16 year old son to Department of Services for Children, Youth and Their Families (DSCYF) and they are trying to remove her 9 year old daughter. The patient from Delaware shared that the vibrations and sensitivity to her hearing has been documented by her doctor and that children services believes she has a mental disorder. Apparently a case worker for the State did a search for CRPS/RSD and found an article which included “Emotional Disturbance” as part of the condition and is using this against her.

Let me try to be more specific while CRPS/RSD can cause a number of secondary symptoms it absolutely does not mean everyone will have them. Unless your doctor has diagnosed you with a mental disorder I do not think this type of state worker is qualified to do so this way. And certainly not by Google search.

Jim Moret, Host of Inside Edition, Attorney and Author of The Last Day of My Life describes his own journey with his son’s CRPS diagnosis in When Pain Becomes the New Normal.

Many of us already face the stigma involved with Complex Regional Pain Syndrome formerly known as Reflex Sympathetic Dystrophy first discovered during the civil war by Silas Weir Mitchell. It is not a mental disease or disorder. It is a physical condition which begins with physical characteristics and symptoms. www.powerofpain.org www.rsds.org

Because this illness is so misunderstood and because there are still so many that are uneducated regarding it’s existence patients face anything from “but you don’t look sick” to “you must be a drug seeker”. This disease does not discriminate! Even children can develop it.

A very high percentage of us, I don’t have the exact statistics, yet I’d guess it to be in the high 90 percentile were active members of society, we worked, raised children, were active in our lives, if single parents raised children alone, some of us had everything, others like myself had enough to just be happy.

Now let me ask you this…

Why would we give all that up for this?

I admit I worry about the single mothers out there with CRPS/RSD who lack family support. Especially when the family does not believe in the illness and when the patient is on disability and the family thinks the patient should be working. Again no education and understanding.

Many don’t even want to know. Do you know how many times I have listened to patients tell me how they tried to reach out to their families, spouses, children with educational material, videos etc, just to learn those people were not interested?

To me it’s no different than learning about Parkinson’s, Heart Disease, Diabetes or any other illness. Would you be interested in that?

This is why ongoing awareness for Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy is so very important and why the power of community is just as important.

There are many disabled parents out there in the world caring for their children.

Each CRPS/RSD patient should be treated on a case by case basis, we should not all be clumped together, one size does not fit all, but the diagnosis is the same.

Autumn asks for your help. She asks that anyone who can come forward to write a letter on her behalf, make a phone call or support her in any way to email her at: Autumn Stevens

~Twinkle VanFleet