Tuesday, September 17, 2013

And yet it continues

I am at the end of my rope.  I got a call this morning from a prominent physician.  He shared my book with a colleague who then wrote a review.  He franticly called my friend upset about the remarks to his comments.  These bullies assumed because they were using false identities, so was the doctor.  The reviewer is a well known doctor and he used his actual name to write the review after reading it.

We tried to set up a conference call to see if we could resolve this once and for all.  They refused to participate.  My 82 year old mom and my daughters have read this trash on amazon, on Facebook and comments on my blog which were later removed.  I do not hate these people.  I think that what they are doing is childish, hurtful and amounts to bullying.  Prior to this 18 month long attack, I had no feelings about them one way or another.

I worked for 10 years as a nurse to put my daughters through private school as my daughter is blind.  The first 5 were before my accident and the second 5 1/2 were after when I was the Director of Nursing of a Home Health Company.  They fabricate their version of the truth; I only worked as a nurse for 10 months?  I became an RN in 1991, went on to get my BSN.  I completed the BSN program in 1995 and had started a master's program.  How is that 10 months.

The lies and bullying go on and on.  It never ends.  I know that they want to see me close up and stop helping people.  If they spent as much time and energy helping others as they do attacking me, the world would be a better place.  Instead, they divide the CRPS community, call directors of large non profits telling more lies and are not womanly enough to get on the phone and say it directly to me.  Instead they create false Amazon personalities, get their friends to post crap, etc.

I do not know how much more I can take, but that is what they want.  I am typing this with tears running down my cheeks.  Enough is enough.  Crawl back under your rock and leave me alone!!

Friday, September 13, 2013


This has been a difficult year for me on Facebook but a fantastic year with my family.

One of the more well known Pain Foundations suggested a conference call to see if these differences can be over come.  I am more than willing to talk things out.  We have not selected a date or time (we are all in different states which can be challenging with the time differences.  I am hoping that all parties will go into this discussion with open arms and an open heart.

Wednesday, September 11, 2013

A Day We Will Never Forget

Today marks the 11th anniversary of 9/11 attacks on the World Trade Buildings.  I'm sure that all of us over 16 can remember what we were doing that fateful morning.  It was my last day at work.  I was packing up while watching my 11 mo old God Daughters (there mom was at school).  I had the TV on to keep them occupied.  All of a sudden I was watching live as the plane struck.  I left the house at 5:00 am to get to work early to finish packing.  My husband often makes day trips to NYC for work.  I can tell if he is in the office or seeing a client by the way he dresses.  Well, that morning I left before he was awake.  The cell towers and his office phone had been knocked out.  My oldest daughter was in college at the time.  She asked if her dad was out of town.  I told her that I did not know and would call her as soon as I knew something.  My husband was in his office that day.

The enormity of that day's event put into perspective my final day of work.  For five and a half years, I had struggled to continue working.  All of that was dwarfed as I sat in the office glued to the TV.

Since that day, there have been some happier 9/11's.  My first cousin Dave and his wife were married on her birthday, 9/11 and that very same 9/11 Jim's cousin got married.  All in all it is 9/11/2001 we will remember forever.  The brave first responders that were lost, those who worked in the towers, the children in daycare and all of the raw emotion that everyone felt.

For me, 9/11/01 marked the end of my career as a nurse but for the country it was a wake up call.

Tuesday, September 10, 2013


I am at the end of my rope right now.  Besides having a huge flare because I was smashed by an elevator,  the weather changes, etc I am sick and tired of people accusing me and my friends of things that are not true or are half truths.

I have never publicly bashed anyone.  In private, I may have expressed frustration about people's action but never publicly.  I have never harassed anyone with non-stop emails, posts, etc.  It is not in my nature. I am a very trusting person, which has come back to bite me. Now I don't know who to trust outside of a small group of people.

About 18 months ago, I was added to a veteran's group by a friend who is a veteran to share my CRPS knowledge.  While posting in the group, I had a difference of opinion with one of the group's members over the definition of remission.  I though that we agreed politely to disagree.  Since I was not a vet, but an invited guest, I thought it would be best to leave the group.

The next thing I know, I am being called to ask why I am apposing  testimony in front of congress that I knew nothing about.  I had no opinion or reason to chime in about veteran affairs since I am not a veteran. I thought that the difference of opinion had been resolved in the group.  Obviously I was wrong.

Things seemed quite for a while.  All of a sudden, someone else was harassing me with nasty messages.  At that time, I did not know that there was a connection between the two.  I added a third party to the message for the very reason listed above.  That situation calmed down.

The next thing I know, CRPS PIP was asked by an individual who I did not trust to help someone that I did know.  I asked this individual if they wanted to be part of the board.  Again, I did not know that there was a connection with this individual either.  During our board meeting, done on line as we are in several different states; we discussed having some other groups split the cost of the financial help to this individual.   I was told that neither group was in a position to do so.  Since I didn't know (and still don't) what the mission statement was of the one group, in private I asked that question and a few more.  This was done in a private chat; not publicly.  Six days later this person resigned from the board stating she wasn't comfortable with the group not having liability insurance.  I had not had a chance to officially add her to the board on paper, I just added her to our meeting.  I never said that I kicked her out or anything like it.  I said that I had not officially made her a board member yet.

Again, there is a calm period.  Next thing I know, the privileged information contained in that board meeting was publicly posted.  Two innocent people had their private business publicly posted.  After that, the posts, emails, Amazon comments, and blog comments began.  If my friends (not prompted by me) tried to defend me, they too became targets.  They were barraged by wall postings, emails, etc.  My daughter saw one of the nasties public postings and was very upset by it. I had to unfriend my mom and step father to keep them from seeing what was going on.  Yes, in the beginning I defended myself but that just made them harass me more and more.  I tried ignoring them.  That did not work either.

Next, I get an email from the head of an organization that I have been a part of for many years stating that he needs to speak with me urgently.  Because of family issues with my daughter and her new baby, I was away for four and a half months.  My husband and I took some time off to get away.  I responded to the email saying that I was not making or accepting phone calls at this time.  I also indicated that I had a pretty good idea what it was about.  Back comes an email loaded with accusations made by a third party against me.  My nice vacation was ruined as I cried on my husband's shoulder about all of this for the first time. I had not shared any of this with him until now.

So here I am back in DC to see my grandson and the saga continues.  I do not see these individuals as a threat but obviously the see me as one.  Why else would they go to such great lengths to bash me in so many mediums?  I will not stop what I am doing to help others.  I will not name names although my name and that of my friends have been tossed around openly.  Our children, grandchildren, cousins, aunts and uncles all had to read this trash about us.  These are people who volunteer their time to help others even though we too have this monstrous disease.  Stress and emotional upset make our pain increase just like everyone else with CRPS.  Don't they have better use of their time?  How can they hate someone so much that they make every day a nightmare?  I do not understand it and I never will; however if I let them stop what I am doing, they win.

So, what can I do or say to stop this?  I have no clue.  Thus the title perplexed.  Whatever it is that you think that I have done, I have no malus towards you in spite of all of your antics.  It is not in my nature to hate people.  We are all human and make mistakes.  I do take issue when you involve innocent people who have a friendship with me or I was trying to help. They should never have been dragged into whatever your issue is with me.

At this point, I think that it is defamation of character.  Because it crosses state lines, that would make it a federal offense.  I have been advised that I probably have a good case.  That will just stir up more crap and continue the harassment to myself and innocent people.  I am at a loss as to what I should do.   I am perplexed.  I have been told that what goes around comes around.  I've been told that the people who really know me, know that I am an honorable person.  Right now, I just want to be left alone.

Saturday, September 7, 2013

September Is National Pain Awareness Month

September is National Pain Awareness Month. So why do we need a Pain Awareness Month?  Most people think of pan as a symptom and not as a disease in it's own right.

When we are injured, we have acute pain.  But not all pain is acute pain.  There are many syndromes that cause chronic pain and are diagnoses themselves.

CRPS/RSD = when the nervous system goes haywire and the nerves send messages to the brain saying that the injury isn't healed.  The nervous system is sending independent nerve signals.  It is usually  preceded by an injury.

Fibromyalgia = it is a more generalized pain that is accompanied by fatigue


What is Ehlers-Danlos syndrome?

Ehlers-Danlos syndromes are a group of disorders which share common features including easy bruising, joint hypermobility (loose joints), skin that stretches easily (skin hyperelasticity or laxity), and weakness of tissues.
The Ehlers-Danlos syndromes are inherited in the genes that are passed from parents to offspring. They are categorized according to the form of genetic transmission into different types with many features differing between patients in any given type. The fragile skin and loose joints is often a result of abnormal genes that produce abnormal proteins that confer an inherited frailty of collagen (the normal protein "glue" of our tissues).
In 2001, researchers discovered a new form of Ehlers-Danlos syndrome that is caused by an inherited abnormality in a protein other than collagen that also normally plays a role in binding together the cells of our tissues (including the skin, tendons, muscle, and blood vessels). Abnormalities in this protein, called tenascin, also lead to a form of Ehlers-Danlos syndrome. Researchers suspect that tenascin could play a role in regulating the normal distribution of collagen in the connective tissues of the body.
Arthritis =  joint pain and inflammation

I could go on and one but you get the picture.  We need to educate the public that pain is not simply a symptom by a syndrome of that is ongoing and requires specialized treatment.  

Friday, September 6, 2013


Like millions of others, I suffer each day with physical pain that is ranked higher on the McGill Pain Scale than Childbirth or Cancer.  Most days, I do my best to push on.  Right now, I am being bombarded on every source of on line organizations by people who must have nothing better to do with their time.  Normally my blog is a place where I can write down how I am feeling, alas they have infiltrated here as well.

I have spent the majority of my adult life helping others. In 1975 I started as a Freshman at Syracuse University and graduated with a BA in psychology.  The business that I worked for when my husband and I moved to PA was being moved to Central PA and I could not go with it.  At the age of 32, I went to a local community college to get an AS in nursing.  I had a blind daughter so I had to be involved in al of her activities.  I helped others with blind children by telling them what I had leaned with my daughter.

In 1990, the four year Universities like Villanova would not accept college credits over 10 years old  because they were considered too old.  Now there are a ton of schools helping those with a degree in something other than nursing expedite their way to getting an RN.  My local Community College would take those "old" credits.  At that time you had to camp all night to be given a number to have your application reviewed (it is now done by lottery).  There were as many as 500 people competing for 135 spots.  So in 1989, I started nursing school.  This enabled me to be a nurse extern the summer between my two years and to begin working as a RN as soon as I passed my boards. I had my girls in private school and my salary covered their tuition.  Sadly this was the best way that my daughter could get an education.  The teacher student ration was 1:30 in the public schools and 1:10 in the Friends School.

Now that these same SU credits were on a recent transcript, Villanova accepted me into their RN to BSN program.  Since I was raising two children and working full time, I graduated from Villanova in 1995.  My plan was then to go on and get my CNM.  Those plans came crumbling down when March 4, 1996  when my car was hit head on.  This was the start of my RSD journey.  In 2001 after having Ketamine Coma, I once again took the entrance exam and was accepted into a CNM program.  Ketamine was not the cure that my doctor had hoped.  With a 4.0 average, I had to take medical leave as I realized that there was no way that I could do the clinical portion which meant a long hours on your feet.

I was lost for a while.  All of this schooling and only 6 mo as a BSN.  I tried volunteering at a local NICU but they required that you rotate through 8 NICU units and do an 8 hour shifts.  If I could do that, I would be working.  I became involved as a mentor through RSDHope.  I met some wonderful people through that program.  But it really didn't help me occupy my time.  I had tried on line support groups before Facebook and they were just bitching sessions. I withdrew from them immediately.  I started doing scrapbooking for all of my friends.  That was fun and a great gift to give people until I developed RSD symptoms in my hands.   I was then presented with the offer to be a co-admin of Ketamine Klub on Facebook.  I joined Facebook to keep in touch with my cousins; many of who are 12 to 16 years younger than I am.  They were just having their kids and mine were grown and gone.   In Ketamine Klub,  I could use the skills that I learned doing a desk nursing job for 5 1/2 years after my accident.  I knew what the insurance companies needed to hear and how to appeal.  I'd found my nook. Or so I thought.

Later, I began corresponding with a younger member and talking about the need to start a non-profit to help those who had lost the battle with workman's comp or their insurance pay for their treatment.  We drifted apart and so with some others with RSD researched how to start a non-profit.  We did some research and realized that it would take a while to set it up.  Another Ketamine Klub member told me about a friend who ran a non-profit and you could work under his FED ID.  Well after doing considerable research, we found that he had lost his non-profit status. We took ownership of our website and started the process of becoming our own non-profit.  That is where we are now.  I guess that this was seen as a threat to others within the RSD community because I began to get attacked on every segment of the Internet.  At first I fought back, but that did nothing but egg them on.  I am now doing nothing.  Let them rant and rave.  The people who really know me, know the truth.  They know that I have a big heart and hate to think badly of anyone.

Once I joined Ketamine Klub I have had two Facebook Accounts because the number of posts on the account that I shared with family and close friends had become so big that I wasn't able to see my family's posts.  I opened a personal account.  Well public posts were made that my daughter saw.  Understandably this greatly upset her.

These people have ways of seeing things that you think are private, are relentless and quite honestly, I don't know how they have time to do all of this crap and at the same time actually help people.  I will not share their names.  It doesn't mater who they are or who they are using to get the information.

I am no longer a trusting person willing to help anyone who comes to me.  I do not like the fact that I can no longer trust anyone except for a few people who I speak to regularly or have met.  What a disappointing world we live in if you can't go out and help people without thinking that every word could be shared.  Privileged information about people's health and finances have been posted openly with no regard to their feelings. I am not upset about what they are doing to me as much as how the fall out has hurt different people.

If it were not for the love and support of this close knit group, I would take down my Facebook page for RSD and find something else to fill my days laying on my sofa at home.  I feel terrible that right now I am turing away people who might need my help.  They will not stop me.  I will regroup and get back to the role I was born to do.  For right now, I am disappointed in the world of pain.  Where is the compassion for your fellow RSDer?  They have none.  At least not for this RSDer who has been battling RSD for 17 1/2 years now.  I know that the RSD community reflects the world at large.  This means that there are crazy people, nasty people, loving people and those who don't want to be bothered.  That is how the society at large is.  I guess the RSD community reflects our society at large.  I find this very disappointing. I have never published who they are or publicly said anything bad about them.  Hell, I don't even know them.  How can you hate someone that you don't really know?

I will not give up or give in.  I will continue to do the work that I do.  I'm literally sick from all of this with pain levels soaring.  I will not engage; that is my mantra ; I will not engage.