Letter To Leaders of Oregon Forced Taper


Below I’ve copied the letter that I wrote to the leaders of the state of Oregon, regarding their new proposal for forced taper off of all opioids in their state:

To Leaders of the state of Oregon,

I am writing to you with a plea for all of your constituents, as well the entire chronic pain population in the USA. What you are proposing to do, by eliminating opioids, is considered torture by the World Health Organization. You are also setting a precedent for other states, if this action against all opioids goes through!

When I’m proposing a big change, even just in my own household; I try to put myself in the place of other family members that my change will affect. Please put yourself in the “shoes (so to speak)”, of the thousands & later on, millions of chronic pain patients that you’ll be affecting and in reality, torturing. If you remove all opioids from your state, the suicide rate will increase dramatically and many intractable pain patients and their families will suffer.

Please think about what you are doing to trauma victims, burn victims and people with horrible chronic pain illnesses and cancer. Would you want to suffer with daily horrible pain, or would you want to take something that has been working for possibly even a decade (or more); to give you some semblance of a life with your children, grandchildren and/or your family. 

Please reconsider this act of cruelty and torture on those living with chronic pain in your state (& then future areas as well).

Thank you for reading my letter and I truly hope that your conscience will help you make the right decision for people who live with pain 365/24/7. Also remember that it could be you or your child, wife or parent at any time. We never know from day to say, what might happen. One minute I was sipping lemonade at an art fair; the next moment, I was hit by a car when the driver ran through a red light. This started my life of pain and I never could have imagined what this new life would be like.

Peace & Hope,

Suzanne Stewart

**Below is a photo screenshot that I took Of the reply that I received back from them:

Walking Through The Day With a Pain Warrior


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This is not just a story about me, but a story that many pain warriors live through on a daily basis. I know because I talk to many of them often.  Much of this is “our story”. …..I awaken each day; the first thing that I do is cry inside of my head. My body lay still too long.  Four hours is too long! I feel pain and don’t want to get up, or move because I know it will hurt. I’m so tired of the pain. I lay there and contemplate rising to my feet.  I hear my husband call my name.  He always says “Hello my Love, Good Morning! Time to rise and shine!”  He tells our Kitty, Luna, to come and get me. She always listens to him and she enters our bedroom and meows for me to get on my feet. Still lying there, I think about the day ahead and wonder if it will be a busy day?  Will it be one in which I have to do a few things? Or will it be a day that I can be a bit quiet?

After 40 minutes has passed from the time I took my medication, I attempt to get up.  First I sit up and I feel the pain in my back. The Degenerative disc disease, Scoliosis, Spondylitis and multiple herniated and bulging discs, make it almost an impossible feat. The medication does help. It takes the pain down from a 9 to about a 5; and I finally get up.  But then there’s the stairs to tackle. I hold onto the rail and then I lean on the wall. I fumble my way down the stairs, as my cat scampers past me, ready for her cuddles on my way to the kitchen. First, I sit on the ottoman and pet her for a few moments and then it’s time for breakfast. My husband has already made the tea and has my toast ready to go.

He goes to work and I go to my chair, my recliner. In my spot, there is a pillow and a blanket and a settle in for a look on the computer.  What fantastic things have happened overnight on Facebook, Twitter and Instagram? I answer a few questions, maybe I help a few people in my support groups? People always volunteer to help me with my groups because they are becoming large for one person to handle on a daily basis. People mean well, but they are also in pain and have much going on in their lives.  Eventually they stop helping and I’m alone again.  I don’t want to give up, because some people just need someone to listen, anyone.  I like being that person. I want to help and do something of value with my life.

Maybe after awhile at the computer, I will either write a blog post, an article for the National Pain Report; or maybe I’ll sign a song that day.  I love the beauty of ASL and the way the emotions come out of my body, hands and face. I can feel something other than pain. Until I’m finished; and then the pain is worse.  I have to rest and take more medications. My husband comes home for lunch because he says that he likes to check in on me.  We’ve been married for 20 years and he always comes home for lunch. I am one lucky lady to have such a knight in shining armor at my side. He never complains about doing so much. He cleans, cooks and does the laundry; after mowing the lawn and fixing whatever needs repaired in the house. Still, he never complains.

In the afternoon, I may visit my granddaughters and my daughter who live only a few blocks away. I’m still able to drive for “personal errands” and for about 10 minutes at a time. If I visit them, I get lots of hugs and kisses and more love and life than you can even imagine. They are rays of sunshine in a world of pain.  They don’t understand that I am in pain and that’s a good thing for now.  I like to light up their faces and give them love and receive that same love in return. My daughter and I may do a couple of errands or have a coffee and chat. It seems like a nice day, right? It’s true, it’s the nicest day you could imagine. Then I come home and I sink into my recliner and sometimes my cat will come and sit with me.  Her love is unconditional and she seems to know when I’m in more pain than usual. She gives me comfort and love, unconditional love.  By that time it is 3:30 in the afternoon.  It’s been a full day and my pain has risen from the activities.  I can’t do anything else.  I don’t have the energy to make dinner anymore. The fatigue is deep and lasts for long periods of time.  I rest and sometimes I nod off in my chair. The cat jumps off of the chair and the back door opens.  My hero is home! The love of my life and my forever soul-mate comes home from another day at his job as a teacher. We muster up something to eat for dinner. Mostly, for him; because eating has become something difficult now. It’s not fun or anything I look forward to anymore. I have IBS, S.I.B.O., and Gastroparesis. There’s so much I’m incapable of eating now.  If I just throw caution to the wind, and eat to be social or “fun”; I suffer more.  There’s the nausea, constant nausea and burning whether it is high or low in my stomach; it’s awful either way.  Then if I eat just a tiny bit too much, I will be sick for hours afterwards. This is something that others don’t see or understand.  My husband sees and watches it from the other side. Then there are the others who I “talk to” on the other side of this computer. Many of them truly do understand.

Then, my friends; it is evening time. The sun goes down and we watch some Television together and maybe read or “play” on the internet for awhile.  All too soon, it is 10:30 pm and my husband goes up to bed. He. has to work in the morning.  He kisses me goodnight and tells me not to stay up too long.  I tell him that I will come to bed as soon as I feel like I’m able to sleep.  Time goes by and it’s one in the morning, then 2:00 AM and 3:00 AM.   I start to nod off as I’m messaging the other “night owls” who are my fellow pain warriors. They are with me at night, because they too cannot sleep either.  We try to give each other support and the strength to persevere.  Finally, the sparks of chatter start to diminish online.  I too, feel like I truly want sleep to come and save me from my body and the pain that is within. Much of the pain is physical, but there is no lack of mental anguish.

***I come from a family that doesn’t know or care that I exist. They are called “M.N.’s” or Malignant Narcissist’s.  I try to stay away, keep my distance. For some reason, I cannot “let go” totally.  Maybe I feel that I owe them something for bringing me into this world. But truly it’s been nothing but pain and abuse as far back as I can remember. Then the failed marriages because I didn’t know how to feel love until I met my soul-mate, Craig. We’ve been married 20+ years now. I thank God for him every day because nobody has ever truly loved me until I met him. Some people ask me why I always go back for more abuse and more pain? I guess he’s still my father and one of my two brothers is still my brother. The other one, I cannot even discuss and won’t.  My oldest brother used to try and protect me, but one day he stopped.  It was the day that I told our family “secrets”. That is when my father took his revenge and turned everyone he could, against me.  I’m not sure why they listen to him? I’ve always been kind hearted, loving and as good a person as I can be. But now the entire family, including dozens of cousins, have shoved me “under the rug”. I am an an outcast.  None of them will talk to me or even look at me if we meet.

I don’t get invited to the very very large family reunions.  Even though I was the only one in my nuclear family that ever attended those functions.  I always took my children to them while they were growing up. I wanted them to have a sense of “family” and belonging. I helped my one cousin, the only one who is the same age as me. She is 6 months older and I always got her “hand-me-downs”. I went for food when she had her big garage sales. I helped her when the family turned against her as her mother was dying. I told her not to let them “punish” her and told her to hold her head up high. They were so mean to her because she couldn’t let her mother come and stay with her when she was very sick and dying. I felt her pain as she told me the stories of her abusive childhood;  we could relate to one another.

But **one day, in 2002, I was in a terrible car accident which started all of the physical pain. No one came for me except my husband. Again, my knight in shining armor there with me and at my side through thick and thin, good and bad.  ***My cousin said she couldn’t come to our house and sit with me for awhile so my husband could do errands. I couldn’t be left alone as I could not even go to the bathroom or dress/undress myself or.    cut my own food. She said that “seeing me in so much pain, made her depressed.  If she was depressed, then her family would suffer.”  Therefore, she could not see me anymore. I’ve not seen her again except at a couple of funerals, but she won’t even look at me. ****I went to my favorite Aunt’s funeral yesterday.  It was in a church and my dad didn’t come because he would have had to have been “nice to me”; and then they might know that we’ve tried to “talk a little bit now and then” again.  Only one cousin spoke to me and only one other even looked my way and smiled.  My Aunts children were welcoming. They knew that their mom and I had a relationship. My cousin, her daughter, told me “mom wouldn’t have had it any other way”; when I thanked her for “letting me come to the funeral”.

**I watched my family all sitting in the same church, singing “Let there Be Peace on Earth”. While the words came out of their mouths, there was no peace in that room.  Only a gathering of many who really don’t know each other anymore, but had one thing in common.  That one thing was the love for a woman who knew how to live and how to love. So you see, there is physical pain and there are other kinds of pain. Some of these exacerbate the others. We just have to surround ourselves with those who want us in their lives.  Those who want to give and receive; or share love with us.

When my head finally hits the pillow at night, I lie down and listen to my husband’s breathing. So glad to hear those sounds of life and know that this person beside me has truly shown me what real love is all about.  I never knew if I would have that, some people never get to know it.  People who are “damaged” like me, have a hard time very often knowing the difference between real love and hurtful kinds of “twisted” love.  I’m fortunate to know this man and lucky to have his love and to have him to love. I try to let the sleep come to me. Relax, sigh and listen to the breath sounds and the sound of the cat purring next to me. This is my real “medicine” in life.  They, along with my children and grandchildren are what makes me happy. I try to remember these thoughts as I fitfully sleep for a few hours, only to wake up to the “fear” of getting up on my feet once more again tomorrow.

 

 

 

 

Support Groups,Chronic Pain, And Why Kindness Matters


 

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When we are in pain, it sometimes can be hard to see another persons pain as well.  I have founded and am Administrator for several Support groups online. Some are for chronic illnesses & pain. While others are for fun and socializing. I’ve noticed that my group for people who love Cats,”The Scratching Post”; is very different than my other groups that are in support of people living with different kinds of pain. The reason that they are so different is because people who are just there to hang out and talk about the silliness of Cats  are usually thinking more positive thoughts and they’re in their happy place. Those of us who struggle with pain, may feel a various number of emotions. We bring those emotions into the group setting. Luckily, in the support groups that I run; I have not had any trouble with drama, in-fighting or bullying whatsoever.  I tend to think that it is because I have been the sole administrator and I take care of anything and everything Before it happens. I always check the “new requests” very thoroughly. I try to keep my groups safe from harm or any kind of researchers that want to “study” us/them. I have had people pretend to be someone who is in pain and they request to join my support group online. A long while back, I had a few interns from various countries, who wished to “study” the persons with CRPS or Invisible illnesses, so they tried to join one of my support groups. I have not ever asked their reasons because they don’t even get that far. I just don’t let them join my groups.

A few of the the ways that I keep my groups safe are by doing a few simple tasks before allowing someone to  join. I look for “signs” on their pages and I ask them several questions via private message. If their page is bare, without even a cover photo or profile picture; I don’t even pursue their request to join. If it just looks a bit “private” but they’ve been on Facebook for several years, then I ask them the questions that I will post below for you. If they have a few friends in my support group(s), or if they are referred by someone in the group; I usually just welcome them to the group and don’t check much more. I will ask the person who referred them or the people they have as their “friends”, if they know them well or if they are just an acquaintance?  Here are a few of the questions that I ask a prospective new member in one of my online support groups:

  • First I will make a statement something like : “Hello, my name is Suzanne and I’m the founder/admin. for the group that you have asked to join (then I name the group)”.  Then I’ll say, “Please don’t feel singled out, because I ask all prospective members the same questions. I like to just get to know you a little bit to make sure that you are in the right group for what you want/need.”
  • Secondly, I will ask them How did you find this group? What were you searching for?(Because my groups are mostly private, which means they can be seen in name only but the posts are private)….this also helps both of us make sure that they’re in the right place.
  • Then I might ask, What makes you want to join this type of group? Do you live with __ or __? (*Chronic illness, invisible illnesses and/or RSD/CRPS), or are you a Caregiver?
  • Next, I will say “When were you diagnosed? Where do you live?”
  • Then I will check everything out and usually allow them to join
  • If they don’t or won’t answer any of the questions, I don’t allow them into my groups. There are many other groups out there and I just want my members to feel safe.
  • If their page has zero information, zero photos and nothing that you can see whatsoever, that is a bad sign and I just usually “ignore” that request to join.

Some ideas for Administrators and moderators of groups already ongoing are:

  • Check the group regularly and just look over the new posts as they come in. Respond as soon as possible.
  • Look for abusive language &/or aggressive behaviors
  • Watch for a person that may be “picked on” or who has the anger of the group “dumped” on them. Act accordingly to figure out and fix the problem.
  • If you have spoken to someone a couple of times and they are rude to you or other members, it’s time to take them out of your group for the members’ sake
  • Ask for help, as I just recently started doing. I just couldn’t be everywhere and do it all. I asked for volunteers, for people who wanted to do some of the things that I cannot keep up with. Such as checking out all of the new members. Watching for any abusive, nasty or negative language or posts; and then telling me about them. Then I can decide whether to delete the post or talk to the person. Either way I will speak to the writer of those kinds of posts; it’s just a matter of before or after I delete it. My new moderators have the choice if it is a very abusive post to just delete it and tell me who and what, later.
  • Make sure that if you do ask for help, you choose people that you relate well with. Also persons who you have known for quite a while and you trust them and their judgement.

Unfortunately, many of us with Chronic pain issues and illness,  don’t always have the most supportive families or friends. These types of people also try to show up in groups to find out information for the “family”. That is another article in and of itself about Malignant Narcissist’s or abusers. If you have a supportive family, that is half the battle; it’s wonderful for you and that alone can help with your healing.

Whether you are a founder/administrator, a moderator or a member of an online support group.  Try to think first before you write, or at least before  you hit the “send” button. Remember that in Facebook support groups, you have the chance to go back and delete what you have written. Just in case you were terribly upset (we all can feel that way sometimes) and you want to get rid of your post before another person’s feelings get hurt or worse. Never carry private or specific information from one group to another. If in doubt, always ask the administrator(s). If you want to re-post an article or something similar, then go to the original Website  where that article was posted and share straight from there. This way you aren’t taking a post from one group and sharing with others. Usually  it is impossible to “share” between private groups anyways; but just in case.

We all continue to learn and grow in our lives each day. I’ve made mistakes before and I try to make amends or change whatever I can, so that I don’t repeat the error of my ways. I do my best to think first before I react or say something to another person, whether they are a friend or foe. Regardless if they are online in a group or out in the world in some kind of group setting. We are all humans and everyone feels hurt when someone is downright rude or is treating us badly. I want to add that if you are going to comment either way about something that someone has said, written or done; always be sure that you know all of the facts first. Don’t just read one line of something that someone has written, and then make a rude or cutting remark.  Don’t try to guess what someone means when they write a sentence or two in a group post online.  Sometimes the short or hastily written words cannot depict the true feelings, ideas or thoughts of a group member.  Keep in mind that some people are better at expressing themselves with spoken words and others are better at writing. Try to not get bothered by the small things, and think about what the “tone” of the words feel like to you; even if you might’ve said it differently.

When all is said and done, remember that we all inhabit this internet world together. We need to be as kind, loving and gentle as possible. There are always times when we say or do the wrong things. What we do afterwards, or the next time; is what matters most. Be kind and remember that the person you are upset with may have a whole mountain of issues, illnesses or problems that you don’t even know about.  That doesn’t give them the right to abuse or hurt you or others in any way. But just get away & remove yourself from the situation whenever possible. It never hurts to explain yourself, if  you feel that someone has gotten it wrong or judged you wrongly.

Lastly, please remember in the support groups for chronic pain, illness, grief, abuse survivors etc….these people are hurting a bit more than the average amount.  Try to be understanding and be a good listener, especially in a support group.  Give hurting members; those who are in much pain either physically or emotionally, a little leeway. Remember to be gentle and kind.  If you felt hurt by the actions or words of another member in your support group, step back for a moment and think. If you forget and then  realize that you retaliated against someone in a group, because you felt angry or hurt; try to make amends. Try to put yourself in someone Else’s situation, if you know it. If not, then try to just be thoughtful of others feelings. Treat them how you would like to be treated.  Remember that Kindness matters!

How To Cope With Pain And The Holiday Grinch’s (Narcissists)



The holidays are hard for many people especially those in pain. Also for people with depression, chronic illnesses, invisible diseases and disabilities; the holidays are filled with exhaustion, exasperation, loss, loneliness, pain and so on. Everyone would love the perfect picture holiday with the warm fireplace, the loving family all around, the dog sleeping on the floor and the cat on the hearth. People wish for all kinds of things from true love to toy cars. But most of all, everyone pretty much wants the same thing: a quiet, peaceful home with a loving family all around to celebrate – and maybe even feel well for a few days. 
While others are out participating in the hustle and bustle of the holiday frenzy; those of us with chronic pain are still living and coping with our illnesses. We are still in pain while trying to do all of these “things” that are expected of us. Our children, our families and friends may indeed love us, but they all want Christmas to arrive in all of it’s glory, regardless of our pain and fatigue. The things that we live with on a daily basis do not go away for the holidays. We don’t get a “holiday vacation” like everyone else does. We must push on, endure and put a smile on our face. When we really feel like sleeping, wincing, sitting, resting and sometimes just crying. My advice for all of us living with chronic pain, invisible illnesses and unrelenting fatigue; is that we need to take “time outs”. Take a look at the large picture for a moment and break it down into small increments. Take on one task at a time and stop when you feel the need to stop. Don’t push yourself, as that’ll keep the pain cycle going. Please stop and rest; give your body a chance to mend for a few hours or take the day “off.” You are allowed to do this, no matter what your conscience tells you to do.

There are many of us with chronic illness, who also have invisible illnesses, such as Dysautonomia/POTS, CFS/ME and/or PTSD. It feels as though these illnesses are rarely acknowledged. We need to make sure that we take care of ourselves first, especially during the holidays. This means that when we feel the fatigue coming on, STOP right away! Don’t keep going until it takes much longer to recuperate. There are those who may have MN’s in their family or group of closest friends. That stands for “Malignant Narcissists.” Those are the people who always put their needs ahead of yours. Stay away from them, keep your distance!! The MN’s use the holidays as a time to preach, cause hysteria, pain and grandstand. They are like vampires and will suck the life right out of you if you allow it. You “feel” as though you don’t have a choice, but you really do!! If you are trying to avoid conflict by pretending that it’s “OK” or “not that bad;” then you will end up with increasing pain, more fatigue, internal conflict and much more than what you bargained for. You’ll never get what you think you deserve out of those relationships. They won’t ever be “warm and fuzzy.” They will always put restrictions on you, rules for you to follow. It may be outward or it can be mind games that they play. If you cannot physically get away from them during the holidays, if you must be at the same gathering…..emotionally leave the room!! You need to do this for your own mental and physical well being.

We don’t all have families with the “chestnuts roasting on an open fire” kind of holiday. Some of us get “Jack Frost nipping at our noses!!” We may not have the “Halls decked with holly and people kissing under mistletoe.” Because in families with “MN’s” you will forever have “Grandma getting run over by a reindeer” and many, many games!! If you MUST spend the holidays with these kind of people, if this is your family tree, then the name of the game is “keeping sane and learning to survive.” It’s not about having fun and singing Christmas carols, it’s about surviving the “Big Chill” that you feel in their presence. Be there if you must, in your body, but make your mind be someplace happy and do not get into conversations with them. You must protect yourself and your children. Don’t say “Oh it’s not that bad,” or “they didn’t mean it that way,” or “you don’t understand them like I do.” Because YES I do! I’m trying to help you make it through the days when we are supposed to be “laughing all the way!!” Usually it is the narcissists, who are “Laughing all the way” and they definitely know what they’re doing. When you can stay away, then do it. When you can avoid inviting them into your life, please do so! But when all else fails,”leave the conversation” at least in your heart, mind and soul. Though your body may be there, you don’t have to be!!! Try to never have the party at your own house when you have MN’s for relatives – because then you are trapped and you cannot leave or get away. They will know they have you like a spider has a fly in his web. All you can do is squirm and squiggle but you cannot leave!

Try to take a step back during the holidays, make a personal space boundary. Keep your distance and stick by those who will not persecute you, make fun of you, be nasty or hurt you. The “MN’s” can get you upset, angry and crying; then fly to “save” you. Those who say the word “love” but never know how to really show it, except with unloving examples of unkindness; along with displays of abnormal affection; don’t truly know what “LOVE” is. They aren’t thinking of you, your pain, illness, or your feelings – and they don’t see what they are doing to you or your quality of life. The honest and only way to avoid the pain of the holidays with Malignant Narcissist’s, is to be with only those who truly love you back and with whom you trust. People who truly love you and won’t hurt you – at least not on purpose.

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Try to enjoy your holidays with a smaller amount of people in your circle. If you are living with chronic physical pain; the emotional pain and stress can take its toll on your body even at a higher rate than usual. There are loving, calm and quiet things that you can do with your own “little” family. You can look at lights in the neighborhoods, order pizza and watch holiday movies. But remember that life is not normally like those holiday movies filled with “perfect” families, etc. Unfortunately, we have to learn to survive and help teach our children not to be controlled by the MN’s of the family and friend pool. Life is so much more “choice” than you might think. You don’t “HAVE to” do much of anything that you don’t want to do, except to try to survive. Love those who are lovable and who love you back. But I don’t mean to stop loving the unlovable. I just mean to love them from a distance so that you cannot be “touched” by their damaged spirits or hurt by their abuse.

Good luck, and don’t lie to yourself, we all know that fruitcake really stinks! Just because it is a “holiday” thing….you don’t have to like it or eat it….so just because they are your “family,” you don’t have to like them or spend time with them unless you want to!! Enjoy your holidays as much as possible and take care of your family, your children, your fur babies; and most importantly, yourself!

One Bloggers’ Reaction To An Attack On Pain Patients!


Continue reading “One Bloggers’ Reaction To An Attack On Pain Patients!”

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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