Hope Is A Verb


img_7869We all lose hope at some point in our lifetime or another. We get sad and start feeling hopeless when too many things happen all at once; that we consider to be “bad”, hurtful or depressing. We may start to feel overwhelmed and this causes some of us to lose hope. Sometimes it is the way we feel inside because of something or some “things” that others have said or done to us or said about us.  Certain words or situations might hurt our feelings or even our ego possibly? The holidays seem to bring about an overabundance of  feelings, situations and even hopelessness. At a time when Charles Dickens’ ghosts would be telling us that we need to learn from our past, live in the present and look forward to our futures. It’s not as easy as it seems. Even the Hallmark Christmas stories, have characters who, by the end of the story, are healthy, happy and hopeful. Those of us living with daily chronic pain are not immune to the difficult, hopeless feeling situations that actually multiply for us during the holidays. You see, we get these feelings on top of  debilitating pain and most often, that brings with it, several illnesses and disabilities.

You might say to yourself, “What is she talking about? Why is she writing such a “downer” as this, during what most see as a happy time of year?” I’ll tell you what I’m talking about. It is this 4 letter word “HOPE”. It can be anything you make it, if you just think about it for a moment. People want “HOPE” to be brought to them. They want it as a “gift” from God. Some others think of it as a noun or a “thing” that we are entitled to. But in my lifetime I have come to love this sometimes mysterious 4 letter word. It intrigues me so much that I wear it on a chain around my neck. I have worn HOPE around my neck for years and years. It is my favorite of all words.  I always thought that I’d get out of a bad situation if I just had “Hope”. Things will get better if I just keep “hoping”.  I always thought that if I continue to wear my “Hope” necklace, then one day I will have “HOPE”; the noun, the “thing” that others seem to have.

But I did not “get” HOPE because you cannot wait for it, for the noun or the “thing” to come to you. I have learned that “HOPE” is a verb. A verb is an “action” word.  I have found that HOPE is also an action word and you have to DO something in order to have and keep HOPE! If you keep waiting for it to come to you, that is when you will lose it. For example; as a chronic pain patient, in order to find a good Dr., one whom you trust and respect; you must continue to look. You can’t sit back and “HOPE” that others will find the Dr. for you. You must do the work of looking, hunting on the internet and reading the different reviews about many many physicians. You might have to do the tedious work of going to 3, 4 or even 5 different Dr’s before you find the right “fit” for you. But after you do the actions, then you can receive the “HOPE”.  It will be rewarding to actively do the “work” or the job of looking for and getting what you want or need for yourself. Along with this comes the feeling of accomplishment and when you put those things together, you will feel more secure, happy and hopeful.  See how it works? If you choose to do nothing, feel sorry for yourself most of the time, and let others do it all for you; then there cannot be much HOPE. If you try your best and keep making the end goal of having and keeping HOPE; making it a verb and doing the actions; I think you will be surprised at how much better you feel inside.I’m not saying that you can never feel sad, loss or grief.  It is OK to feel sad sometimes, as long as you can get yourself back in time, before the loss of hope comes.

I have an example for you, and it just happened to me during these past few weeks.  I was feeling sorry for myself and a bit hopeless. Silly as it seems, I had taken off my “HOPE” necklace and everything just appeared to be a bit bleak. I was experiencing higher pain levels because we live in Michigan and it’s been so very cold. I don’t like going out much or at all during this part of the year because of the higher pain levels along with extreme cold. But I do want to go out, because this is my favorite season of  helping others, HOPEfulness and cheer. I love the lights, the music and the Christmas trees. I usually feel happier even when staying inside with my cat in my warm, cozy chair. I enjoy drinking something hot and watching the overly dramatic Christmas movies. But these past few weeks I had been feeling down and a bit hopeless.  I was feeling that I was trying even when I didn’t feel good enough to try anymore. I continued “doing” when I didn’t feel well enough to do the things that I just wanted to do.  But I was adamant about doing those things anyways. I realized that you must stop and take a time out, when you need one. It’s OK to be sad for awhile, but just when you feel that HOPE is lost, that is when you are keeping it as a noun and something that is given to you. But things will turn around when you remember to keep HOPE as a verb. Keep it as an action word and one in which you have to do something in order to have it. When you make HOPE a verb,something always happens to change the negative feelings in your life.

Just when my HOPE was draining, I received a large envelope in the mail.  Inside was a blue folder with the seal of Michigan on it. When I opened it, I started to cry and I was ecstatic. What I held in my hands was a “Special Tribute” from the Michigan House of Representatives  and from the Governor,  Rick Snyder!  I’ll Post a photo of the “Special Tribute” here so that you can read it. I have been rewarded when I have never asked for any rewards. I received a special tribute for the advocacy work that I do and my “compassion for others”.  I don’t have any idea where it originated?  I know who signed it and sent it to me; but what, how, why me?  All I know is that I was feeling down and tired of constant pain, even though my pain is somewhat controlled. I was losing HOPE because I was waiting for someone to give it to me. I had to remember again, that it is an action of “doing something”. Though I did receive something in the mail that truly cheered up my spirits. In the end, I did something to make it happen.

Don’t lose hope because it’s not something you can “hold or touch”; it’s something that you “DO” or “act upon”. My hero was an Advocate, Helen Keller.  She was blind and Deaf, but she never gave up. She was tenacious and I strive to be like her. Especially in that I’d gone to University to be an Interpreter for the Deaf and blind. I worked at a major Hospital as an Interpreter and at magnet schools for hearing impaired children. Then, in 2002, my car was hit by a man who ran through a red light. I won’t go into the multiple injuries and surgeries. But I will tell you how ironic it was/is that I am fluent in American Sign Language. Deaf culture & ASL have always been something that I love.  As a result of the car accident, I also suffered a “Traumatic Brain Injury”.  Part of that includes hearing loss and vision issues. I have a convergence insufficiency, chronic dry eye, my own hearing aids and prescription eye drops that I must use on a daily basis in order to keep from going blind.

Whenever I feel that I’m losing HOPE, I remember all that I have been through and all that I still CAN do. I try to remember to never stop doing the actions that keep my HOPE alive. Lack of action makes hope die and that is when I remember what my “hero”, Helen Keller, once said: “Your success and happiness lies in you.  Resolve to keep happy, and your joy and you shall form an invincible host against difficulties.”

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Individuality In Pain….


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Hello Luvs,

  We each feel like our own pain is the worst and that what we are going thru is the hardest and most devastating. In a way, this is partially true. That is because when it is” YOUR pain” then it ISYOUR” WORST, do you know what I’m trying to say?  What I mean is that everything can be challenging when you feel like your own story is the only one that’s difficult like this.  A friend of mine who is in my international  buddies/bloggers group *( ladies trying to reach out via blogging, to help those of us  in pain), she said this and I asked her if I could quote her here in my blog; she approved :
“Consider this idea from Brian Greene who writes on string theory in clear English : He points out that, in an infinite universe, each of us is at the center”. Exactly, my point and what I’m trying to convey here, today.   For example, one person may feel that whatever they are going through with chronic pain is the worst pain they’ve experienced in life…ever!, The patient may feel this way due to the possible negative outcome of certain treatments or the lack of treatment and/or empathy/ understanding. One person could feel that their situation is the very bottom of the “pit”. The very “fires of Hell” very well may be his/her situation. The outcome could be a “loss” of  the use of his legs;  to him this is the worst thing that he could imagine.  For another pain patient, or RSD/CRPS sufferer, she may be afraid and feel that her suffering is the hardest that anyone can imagine. She may scared because she is so young with her whole life ahead.  For her this disease is taking so much;it is a thief of sorts!  She could lose so many possibilities in life. Maybe she has indeed lost so much already? What about the younger ones who’ve never been able to experience the love or the dream of being a mother and holding that baby for the first time? Maybe their dream is something different and they’ll not ever get to do the things that I got to do prior to my pain? There is much to lose at each and every stage, when your life gets harder  and then even harder to find things that make you smile again 

   As for me, I’ve lost so much… and 2002-thru now has been a bit more than very difficult. I mean how many people have : lost their mother, their whole family and even their 18 yr old daughter; after raising her almost solely as a single mother? Then later, missed her wedding, and never even knew about having a  granddaughter for a very long time; without ever meeting her? How many people have at the same time, suffered from:  a CVA(stroke), PTSD from a history of abuse, POTS/Dysautonomia/NCS, a heart attack, TBI w/ 3 yrs of PT,OT & TBI rehab; all while enduring 12 surgeries following a terrible car accident?? Also at the same time, still suffering an added degenerative disc disease,A trial fib, 2 pacemakers, pectoral muscles totally needing to be rebuilt and R.A?  All of that,along with “full body RSD/CRPSII”??  What if their RSD/CRPS is in their mouth, eyes, feet, legs, back, neck, knees and even into the chest wall and heart muscle?? Suppose this person also has nerve damage to ears, eyes, legs, feet, back, shoulders & hands? What if they have lost vision and obtained 2 hearing aids as well?   Have you guessed yet, that this person is me? I went from leg braces to wheelchair for anything more than 10 minutes walking now.  I have a motorized scooter  that I cannot use anymore because my shoulders hurt horribly and I suffer from Long Thoracic nerve damage and have other Neurological damage/pain too. I  have RA now and cannot take the immuno suppressant meds due to my immune deficiency disease called “Hypogammaglobulinemia”.  Oh yes, and I have something called  “Long QT syndrome”, an elongated QT line in my EKG, that gives no symptoms but is silent in that it only causes “sudden cardiac death”!  My heart also suffers from  MVP, Pulmonary valve hypertension, and tricuspid valve prolapse as well. I suffer every day from the TBI and the horrible forgetfulness and memory issues.  Not soley “CRPS memory fog”, but deeper memory issues which people don’t understand unless they have true Cerebullar damage to their brain because a man ran through a red light one day while fighting with his wife. Then there is the CKDII and Asthma….. just so many health issues that are  too many to mention here.

   After my heart surgery this past February, 2013; I found out that my RSD/CRPS  has traveled to my heart as well as my whole left chest area. I have so much pain in my neck, my knees, lower back, hands, feet, arms, legs etc, from several of these issues. At times, I’m afraid, I’m sad and I’m lonely. But I know that this is only “MY” worst, not any of yours; not anyone elses.  We all have our own certain issues that are specific to each of us.  We are all going thru each of our own private” HELL”.

  I’m so sorry for each of you in your own separate situations…I cannot take the pain “journey” for you or go thru it with you in a personal way. But I can be your good friend, walk with you, next to you; next to your heart. I can love you and when you’re afraid;  I can talk to you and virtually hug you and love you.  We all separately need to know that we EACH feel like we are at our “worst” at different times. It depends, but every person has real fears and real pain.. Our own worst is still something we own as our personal “worst” experience, just as we experience our own personal best situations.  I hope you all understand what i mean. I have recently read a story of poor woman in terrible pain with great fear.  I do understood her fear (to a point) and her pain (only from as far as I can draw from my own experiences). Then I saw read about another, younger woman in the same kind of horrible pain.  Both of their personal deep fears and pain came through. The younger one feels that she has so much to lose as she hasn’t even started her life yet.  Some of us already have had our children and we’ve had real jobs for a while and may have even been through some good &/ or exciting adventures prior to becoming a Chronic Pain patient. Maybe we’ve done some fun things in our lives or accomplished a goal?  Some of the younger ones in pain, have not gotten to do any of those things, not yet, anyway.  What I see through my advocacy with pain, Invisible Illnesses and RSD/CRPS;  is so much love and compassion. Sometimes it is dampened and even overidden by our real fears and the feeling that we are “the worse off”. We each may feel that our pain is  “the worst”…our own personal worst. When I think about it this way, I realize what we are all feeling and I can empathize better with others in pain. I know that they also share these same ideas and solitude in pain. I just so badly wish i could just fix everyone. I love you all so much.. We will not give up, we will not give in and we will not stop trying to fight for a life that everyone deserves.

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Some Have Sight, But No Vision!!!!!


Some Have Sight, But No Vision!!!

Hello Luvs…

    Guess what?? I’ve been nominated for “4” Health Advocate  activist awards through WEGOHealth.com!!  What this means is that people who I’ve possibly helped or people who know me feel that I am indeed an advocate for people with Invisible Disabilities, including but not limited to RSD/CRPS. It would be wonderful if some of my  readers could and would endorse me.  You see, the next step is that I need endorsements from people who know and trust me. Would you possibly be able to “ENDORSE” me?  Please….could you??? Would you please help me to continue helping others ? You can endorse me by going here;http://awards.wegohealth.com/nominees/suzanne-562 for the “Best in show: community or Forum”….OR to the nomination for “Health activist Hero” is at: http://awards.wegohealth.com/nominees?award_id=health-activist-hero and for the “Best in show: You tube” award; if you’d like to endorse me for that…..go to : http://awards.wegohealth.com/nominees/award/best-in-show-youtube and last but not least to endorse me for the “Best in Show” “Best Kept Secret”Award...go here: http://awards.wegohealth.com/nominees/award/best-kept-secret .   These are the 4 links to visit to endorse me for all 4 (four) of these WEGO HEALTH ACTIVIST AWARDS.  If you don’t know me at all, I surely don’t expect you to endorse me. Only if you know me and you believe in me and you believe & that I’m a good candidate,only then should you endorse me .  I would never ask anyone to endorse me if it wasn’t something they felt in their heart and soul.  So please, think about it, would you?  I don’t want this due to a need to make my ego grow….I don’t need this to be somebody, to be an advocate with a drive. I don’t wish this for selfish reasons. I only hope for this to help my CAUSE…..my dream that there will someday be cures for all of these horrible invisible diseases, and especially for the horrible, most painful of all Chronic Pain diseases; “RSD/CRPS” or aka “Complex Regional Pain Syndrome”. If I win any or some or all of these awards, it will just make my purpose be known a little bit more. Maybe someone will say “Oh Yes, that girl…the one who won the “Best in Show: Community Forum” or the “Health Activist Hero” award, she makes that support jewelry for a whole bunch of diseases. She writes about it, has several Social media sites about it and does “You Tube” informational video’s and performance video’s to catch people’s attention!  She’s that woman who has the “Support in Jewelry” website.  Then…maybe, …just maybe…. someone will buy a bracelet from me. I will in turn, keep giving the money that I get from the support bracelets (the majority of it, minus expenses) to Non-Profit RSD/CRPS groups like RSDHope.org. Then…after that…maybe one day…we will have that dollar amount to spread more awareness for…., do more research for….and support more education for these most painful Invisible Diseases, and then one day my dream will come true and there will be less pain.   Helen Keller once said that “alone we can do so little, but together we can do so much”!..She is my hero….she was blind, but she saw more than most people can see…she was deaf, but could listen with her heart….she was mute but said more than anyone I know!!! She said once…that the “most pathetic people, are those who have sight but no vision”…I have a vision. I am pursuing that vision and I won’t stop until I draw my last breath! I may not have money, I may not have a large family and I may have more pain than I can bear some days….but….I am richer than anyone I know, I have the best “family” because I know who truly loves me and I have experienced pain and do so every day. It reminds me not to ever give up!! Thank you….