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.