This is My Fight …….

This is My Fight …….

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This post stems from some horrible comments that were made on one of my videos on YOU TUBE. MY one YOU TUBE channel is mostly dedicated to information and helping others struggling with chronic pain and /or Invisible Diseases or disabilities. I am not writing this post to “brag” about what I do, because it’s not all for unselfish reasons. It also helps me continue to live on and to want to continue to try and move on beyond the illnesses and the pain that I live with every single day. I was thinking about just deleting the mean comments that someone who says their name is “Jose'”, wrote to me. I thought about not responding and never even saying anything back to this person or these people posing as someone named “Jose'”. I am going to copy and paste the comments here; that were put after my very short video.  The video is one that I made after only day #1 going through withdrawals from being on the Fentanyl lollipops for 12 years and 20 + per day. It was prescribed by my Dr’ of 14 yrs or so. It was Ok’d by the insurance companies and the pharmacy never said a word. I was and am a “lay” person and I did what I was told. I had been on 2 x 100’s strength Fentanyl patches at a time and changed them every 48 hours. At the same time I was on those lollipops. I was put on them at first because every pain medication “ate up my stomach”. Nothing I took by mouth worked because it made me sick to my stomach or burned badly.  So I was put on the lollipops and the patch. One day when I fell and my pain was made so much worse, my GP; the M.D. that had me on those dosages, told me to “go ahead and start wearing 2 of the 100 strength patches”. I did what I was told just as I’ve done my whole life. That is why I’ve gone through so much abuse and trauma because of trying to be the “good girl” and do whatever someone who I thought was a person in “power” or who had “power over me “(so I thought) told me to do.

The reason that I posted this Artistic Sign Language cover song by Rachel Platten, called “Fight Song”; is to show how I am feeling much better now than I was during that “withdrawals day #1 video”. I only did that withdrawal video to show others what it might be like for them to go through withdrawals and what it might feel like. I then posted my new YOU TUBE page called ASLSuzyQ because that is where I put my ASL cover songs. I lost my career due to PTSD, pain, nerve hearing loss and more pain, 8 surgeries, a TBI (Traumatic Brain Injury), disabling pain and illnesses. But now I do little tiny bits of ASL to songs because it cheers me up and I hope it cheers up others as well.  I can only do it for a little while and the pain afterwards is debilitating. I cannot even hear the song with the music like I could in the past as I acquired 2 hearing aids due to nerve hearing loss.

I am now going to show you and copy and paste exactly what this/these person(s) wrote to me . Then following those comments, I will post my response to the comments. I’m not sure if this person is really someone named “Jose'” because their “account” in You Tube is not a real account. This person or person may even be some  “bullies” that had popped into my life recently. I’d been abused and in fact I’m used to spotting Narcissist’s and Malignant Narcissistic abusers. Therefore I “popped” them right out of my life as fast as they tried to hurt me and attempted to ruin my long time friendships and my reputation. But my reputation speaks for itself and I don’t have to defend my honor to anyone. I know who I am and what I’ve done. I know what I am doing and hopefully what I will continue to try and do.  I’m a good and kind person. I’m not perfect, but the only one who can judge me is God.  Here is what this person or these persons wrote to me and then afterwards is my response:

SPEAK UP! STOP FEELING SORRY FOR YOURSELF. I’M ON 4-100 PATCHES. You slowly come off them by matching the withdrawl symptoms. Stop and think about it. Some of us have it worse than you. get a grip

-Hello Jose, Im sorry you are such an angry man. It’s too bad that you judge before you know anything at all about me or my life or my background . You know nothing of me or what I’ve been through. Actually I was told by SSDI that I “am the worst case of child abuse/trauma that they’d seen in the past 36 yrs”, that was when i first got on disability in 1998. I also at that time had and still have CKDII now III. I don’t feel sorry for myself, in fact I’m a health advocate /activist. I’m an ambassador for the U.S. Pain association and a Mentor for RSDHOPE.org. I run 2 support groups with over 750 people in chronic pain. I’ve done commercial for Invisible diseases association and I’ve been a “chemo-angel” since 2005. I help others and I don’t hurt people, especially other’s in pain, like me. My new pain Dr. who helped me through the withdrawals in July 2015, this Summer, when I made this video, couldn’t believe how many “real” pain illnesses I have and deal with. He and all of my Dr’s that I’ve had for many years, tell me “how proud they are of me” for all I’ve been through and then to be left like that on 2 x 100 fentanyl patches (weighing 120 lbs at 5’5″ tall and 53 yrs old!!) and 20 + fentanyl lollipops daily. I had to go down slowly on my own, which I did. I then got to 2 per day or 3 and then I took zero after the 12th of July this past year. I’ve never had one again in all of 7 months. I’m proud of myself. I didnt ‘have to go anyplace to be “treated” and a kind pain Dr. took me and is proud of me for all that I have and all that I try to do for others. I only made the video to help others to see what it may be like at first and then I did the other video’s such as “stand by you” in ASL by Rachel Platten and many others, since then to show them and everyone that I did it and can do it and am doing it. I don’t feel sorry for myself very often, but sometimes I allow it for a few moments. I have been a survivor of childhood trauma/abuse since I can remember, then 2 marriages- abusive and one to an ex cop who’s not one any longer but not because of me, because he hurt someone after me. I finally found my soul-mate and actually today, Valentines day we are celebrating our 19th anniversary. Only some of my chronic pain illnesses include: full body/systemic CRPS, Polyneuropathy in Collagen Vascular Disease, Autonomic Neuropathy, Prinzmetal angina/coronary spasms, CKDIII, Rheumatoid arthritis, Osteoarthritis, Coronary artery disease, right long thoracic nerve neuropathy, I have Long QT syndrome in my heart, atrial fibrillation and have a pacemaker. I had heart surgery in 2013 and my CRPS went inside of my body at that time. Im on my 2nd pacemaker. I had a heart attack in May 2005 and a CVA or stroke in 2006, along with 2 “mini” strokes since then. I’m on Coumadin/blood thinners for that. I have Arnold Chiari Malformation I and Multiple herniated/bulging discs in my Lower back and neck at C 4/5 and C5/6 and L4/5, S-1….I have SCID or “severe combined immune deficiency disease”, along with Eczema secondary to CRPS, Asthma, nerve hearing loss with 2 hearing aids and I lost the career that I went to College for …I was an INterpreter for the Deaf and now I sign songs and do artistic signing of covers of songs when I’m able. I’ve had 8 surgeries and all of this happened after a car accident in 2002 ,when a man ran a red light while fighting with his wife. I was knocked unconscious and for 30 minutes or so I’m told. I was also in brain injury rehabilitation for 3 yrs outpatient, because I suffered a Traumatic brain injury. Luckily I found the best Dr’s and got leg braces, a wheelchair, walker and motorized scooter and loftstrand crutches to help me along. I use a cane sometimes when that’s all I need; other times I need the wheelchair depending on my pain that day. I didn’t need to explain all of this,but I felt that if someone who actually has “feelings” and “compassion” ever reads this..they will see how mean and uncaring others can be when they are ignorant to the situation and know nothing of the person they call “feeling sorry for herself”. There will always be people worse off than me and than you. There will always be people better off than we two….I already know that my spirit and my heart are much much better off than you. You can be “sicker” than me if that’s what you wish sir. You can “win”….you can have that place if you want it. I don’t want to be the “sicker” one. I want to be the one who survived to help others and work with others to help them to keep on wanting to survive and never give up… Good day.

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So that is what they/he/she said to me and this was my response. My husband asked me “why did you bother to write back”? He told me that I should have just denied the comments and not approved them.  But I wanted others to see how people can be so mean, even when you are trying to be helpful and no matter who you are or how “good” you try to be, there will always be someone who will judge you and try to hurt you. The only way they succeed is if you allow that hurt and meanness to get into your heart. It will not penetrate my heart because I want to be a good, kind and thoughtful person. I want to help others and I will continue to do so as long as I possibly can. People like this are one or more of many things:  Mentally ill, abusive, Narcissistic and /or Malignant Narcissistic abusers; or all of the above!! I had to show people that no matter what meanness or hurtfulness comes my way or may come your way; don’t ever give in or give up. I won’t either!
I do have some “protected” posts or “private” posts. For my own safety and due to the abusers in my life still today; I have had to do this. If you wish to read those posts, please email me and I will send you the password. Thank you so much…Im sorry this post was not uplifting but I just wanted to show that no matter how hard someone tries to be good and kind and even try to help others, there are always bullies and Malignant Narcissist’s out there ready to “Pounce” and they’ll try to hurt you.  Just don’t let them hurt you or your spirit. Know yourself and what is in your heart and soul.
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ADDITION:
Well, I was going to copy and Paste the “apology” that I got from this person. I went back to go and do that so you could see that by responding in an assertive way and making the person responsible for what they did, said….sometimes people will rethink what they’ve said or done. In this case, Jose’ decided to delete his message, which in turn deleted my response. Therefore, it is all as it never happened now on YOU TUBE! But it is here, in my blog and I hope that I’ve learned something and I pray that others have also learned from this post. Thank you and I pray that you have a low pain day and a good day today and every day…

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