Abandonment and Rejection…


I found this most amazing blog and the writer/author is a new “sister” to me. I am in awe of her writing and her poetry and songs. I also love poetry but something inside me has died for quite awhile. I’m working hard on it…thank you and please check out her blog, it’s so awesome

The Abuse Expose' with Secret Angel

This is for teens,
and others feeling alone.
For many have been wounded,
with a lack of love shown.
Abandonment and rejection…
even if only perceived,
Cause brokenness in lives,
where lack of love is believed.
Busy schedules…
and tempers so short.
Cause hurt feeling…
and brokenness to start.
For parents don’t realize,
the importance of their affection.
As many ignore their children,
causing feeling of rejection.
And many people hunger,
for affection and love.
then rush into relationships,
which are definitely not from above.
And then what happens,
when “love” is really lust?
The relationship falls apart,
for true love is a must.
And each time we love,
we give a part of our heart.
Then when it gets broken,
the healing has to restart.
So though you feel rejected,
abandoned and alone…
please wait for that special one,
when “true love” is really known.
For God has a…

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6 Things about Chronic Pain You Didn’t Know You Knew


I thought this would really help some of my readers with RSD/CRPS and chronic pain as well….thank you for writing this !!

Then Everything Changed

Chronic pain isn’t just constant pain, though that would be more than enough for anyone to handle, the truth is chronic pain always brings friends. These added challenges are obvious, but rarely taken into consideration by “healthy” people.  Remembering that like all bullies chronic pain travels with a gang can help to better understand the life of someone in chronic pain.

Pain is exhausting.  We have all had a bad headache, a twisted knee, or a pulled muscle, and by the end of the day it is a monumental effort just to read the mail.  You may not have consciously realized it, but the pain that has relentlessly nagged you through out the day has drained you as bad as any flu.  Even when you try to ignore pain it will stay in the back of your mind, screaming for attention, draining away all of your energy. With chronic…

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Having Chronic Pain..From The Writings of Bek Oberin


Hello Luvs,

I thought my friends may want to read this. If you’ve seen it before, I’m sorry I repeated it again…but if you haven’t seen it before, it’s pretty awesome and I just wanted to share it with you !!

*(Author UNKNOWN adapted from the writings of Bek Oberin.).

 Having chronic pain means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, Most people do not understand even a little about chronic pain and its effects, and of those that think they know, many are actually misinformed.

In the spirit of informing those who wish to understand: These are the things that I would like you to understand about me before you judge me. Please understand that being sick doesn’t mean I’m not still a human being.

I have to spend most of my day in considerable pain and exhaustion, and if you visit, Some times I probably don’t seem like much fun to be with, but I’m still me, stuck inside this body. I still worry about school, my family, my friends, and most of the time, I’d still like to hear you talk about yours, too.

Please understand the difference between “happy” and “healthy”. When you’ve got the flu, you probably feel miserable with it, but I’ve been sick for years. I can’t be miserable all the time. In fact, I work hard at not being miserable. So, if you’re talking to me and I sound happy, it means I’m happy. that’s all. It doesn’t mean that I’m not in a lot of pain, or extremely tired, or that I’m getting better, or any of those things.

Please don’t say, “Oh, you’re sounding better!” or “But you look so healthy!” I am merely coping.I am sounding happy and trying to look normal. If you want to comment on that, you’re welcome.

Please understand that being able to stand up for ten minutes doesn’t necessarily mean that I can stand up for twenty minutes, or an hour. Just because I managed to stand up for thirty minutes yesterday doesn’t mean that I can do the same today. With a lot of diseases you’re either paralyzed, or you can move. With this one, it gets more confusing everyday. It can be like a yo-yo. I never know from day to day, how I am going to feel when I wake up. In most cases, I never know from minute to minute. That is one of the hardest and most frustrating components of chronic pain. Please repeat the above paragraph substituting, “sitting”, “walking”, “thinking”, “concentrating”, “being sociable” and so on, it applies to everything. That’s what chronic pain does to you.

Please understand that chronic pain is variable. It’s quite possible (for many, it’s common) that one day I am able to walk to the park and back, while the next day I’ll have trouble getting to the next room. Please don’t attack me when I’m ill by saying, “But you did it before!” or “Oh, come on, I know you can do this!” If you want me to do something, then ask if I can.In a similar vein, I may need to cancel a previous commitment at the last minute. If this happens, please do not take it personally. If you are able, please try to always remember how very lucky you are, to be physically able to do all of the things that you can do.

Please understand that “getting out and doing things” does not make me feel better, and can often make me seriously worse. You don’t know what I go through or how I suffer in my own private time. Telling me that I need to exercise, or do some things to “get my mind off of it”, may frustrate me to tears, and is not correct. If I was capable of doing some things any or all of the time, don’t you know that I would?I am working with my doctors and I am doing what I am supposed to do.

Another statement that hurts is, “You just need to push yourself more, try harder”. Obviously, chronic pain can deal with the whole body, or be localized to specific areas.Some! times participating in a single activity for a short or a long period of time can cause more damage and physical pain than you could ever imagine. Not to mention the recovery time, which can be intense. You can’t always read it on my face or in my body language. Also, chronic pain may cause secondary depression (wouldn’t you get depressed and down if you were hurting constantly for months or years?), but it is not created by depression.

Please understand that if I say I have to sit down, lie down, stay in bed, or take these pills now, that probably means that I do have to do it right now, it can’t be put off or forgotten just because I’m somewhere, or I’m right in the middle of doing something. Chronic pain does not forgive, nor does it wait for anyone.

If you want to suggest a cure to me, please don’t. It’s not because I don’t appreciate the thought, and it’s not because I don’t want to get well.  Lord knows that isn’t true. In all likelihood, if you’ve heard of it or tried it, so have I.  In some cases, I have been made sicker, not better. This can involve side effects or allergic reactions, as is the case with herbal remedies.It also includes failure, which in and of itself can make me feel even lower.If there were something that cured, or even helped people with my form of chronic pain, then we’d know about it. There is worldwide networking (both on and off the Internet) between people with chronic pain. If something worked, we would KNOW. It’s definitely not for lack of trying. If, after reading this, you still feel the need to suggest a cure, then so be it. I may take what you said and discuss it with my doctor. If I seem touchy, it’s probably because I am. It’s not how I try to be. As a matter of fact, I try very hard to be normal. I hope you will try to understand. I have been, and am still, going through a lot.

Chronic pain is hard for you to understand unless you have had it.It wreaks havoc on the body and the mind. It is exhausting and exasperating. Almost all the time, I know that I am doing my best to cope with this, and live my life to the best of my ability.  I ask you to bear with me, and accept me as I am. I know that you cannot literally understand my situation unless you have been in my shoes, but as much as is possible, I am asking you to try to be understanding in general.

In many ways I depend on you, people who are not sick. I need you to visit me when I am too sick to go out. Sometimes I need you help me with the shopping, the cooking or the cleaning. I may need you to take me to the doctor, or to the store. You are my link to the “normalcy” of life. You can help me to keep in touch with the parts of life that I miss and fully intend to undertake again, just as soon as I am able.

I know that I asked a lot from you, and I do thank you for listening.

It really does mean a lot.

 

an explanation of CRPS

an explanation of CRPS

***love you all***

***love you all***

The Short Version of “My RSD/CRPSII Journey”


Photo Sep 13, 6 45 57 PMHello Luvs, This is just an updated version of a Facebook note from about 5 or 6 years ago. I wanted to just update the info a little and my age etc.  I don’t think I’d ever written just a short and simple version of my RSD/CRPSII  journey. I’ve written about other things and ailments  and such….but this is just a re-copy of a simple note from an old Facebook page of mine. So here it is and I’m just sharing it with you. …Now, remember…it’s not a well written or even well planned out or well thought about “blog ” post, but just a Facebook note from ages ago. I only wanted to share because I just realized that some people don’t really know how I got the RSD/CRPSII.  So here you go…I hope it’s not too boring..

My name is Suzanne and I am 52 years old. I have written other “notes” before but they all included other things that have happened to me in my lifetime and not “just” the RSD/CRPS  journey. I thought I would just write a note about my journey with RSD/CRPS and not any of the other things going on medically or regarding the horrible car accident that I was in when a man ran a red light on August 11,2002. The accident changed my life completely so I do have to give an introduction about it and then I’ll stick to the RSD/CRPSII.                                                                                                                    I’ve had 12 surgeries & suffered an MTBI with brain injury rehab for 3 yrs, Worsened Dysautonomia/POTS/NCS with a pacemaker.  I’ve got:  nerve damage, degenerative disc disease, leg braces/AFO’s.  I was in wheelchair then walker and now I usually use a cane but still keep the wheelchair always with us in the car. I have a motorized scooter for long distances…Oh there is so much more..I just wanted to give you a little insight is to the things that were bad enough and then in 2007, April; I had surgery on my right foot. It was going to be my last surgery for awhile and then in June 2007 after it wouldn’t stop hurting, burning and burning and being “on fire” and being “purple” and “hot” etc…I got the “news” from the foot surgeon that did the surgery. She told me I had RSD/CRPS or “Reflex sympathetic dystrophy”. I hadn’t ever heard of it before. She offered me “lyrica” and some lidoderm patches. I couldn’t take the Lyrica but I did try the patches, they didn’t work at all. I was already on mega pain medication from the chronic pain from the car accident in 2002. The pain Dr already had tried everything on me BEFORE I even got the RSD! He wanted me to get an intrathecal pain pump. They set up an appointment with my husband and I and talked about all of it with us. I decided that although I didn’t really want another piece of metal (as big as a hockey puck and I’m only a tiny woman), bigger than my pacemaker and I had screws in my shoulder already also. I would let them set up the pump “trials” just to see if it would work. I am always willing to try things to make sure I’ve exhausted all options.

The night before the pump trials, the Insurace company called and ….well, no …wait…actually the pain Dr’s office called and told me the auto insurance company called them and denied the pump totally! They said they no longer could help me because they’ve tried everything they could. Now remember this was BEFORE I ever got the RSD! So the pain Dr did continue for awhile to call my GP and they’d discuss pain meds and what I should do and finally I just let my GP be the “eye in the middle of the storm” for me. He’s helped me so much and I owe him for that, he is a wonderful GP. Soooo…then came that day in June 2007 when I was given the diagnosis of “RSD” along with the lidoderm patch’s and sent on my way! I had no idea what RSD was and didnt have a clue at all and she didn’t tell me either. I decided NOT to look it up online because whenever I used to do that, I would get scared and make myself worry and so I just didnt do anything for awhile. The pain in my foot got worse and redder and more purple and it was as if someone poured gasoline on my foot and set me on fire! I put an ice pad, a soft pad that is cold from physical therapy on it and wrapped it in that sometimes. I swear I could almost hear a “ssssssstttttt”  or sizzling sound coming from the cold hitting the heat! It did help a bit and then I found out that you are not supposed to use “ice” for RSD or it can spread or make it worse. Well, I don’t consider this “ice” but just a cold pad, so I used it and I still do.

Then I went back a few months later crying to the GP and crying to the foot surgeon so they sent me to a foot/ankle orthopedic DR. He came into the room and I already had my socks and shoes off. He said first thing to me “This is classic RSD on your right foot”! Oh my gosh!!! How did he do that? So he also noticed that my foot drop was worse and I got ordered prescriptions for 2 foot/ankle orthotic braces or “AFO’s” to help my foot not drag. They also got me some different than the ones I wore the first few years after the car accident. These ones didn’t touch the top of my foot which was essential due to the pain!2012-12-19 00.40.32-1

I then had an appointment with a Neurologist and a Rheumatologist for other reasons and then they told me that I had “RSD or CRPS” also! So I had several Dr’s tell me that I have it and the foot/ankle orthopedic Dr did give me a brochure or a copy of some written material on RSD and it blew my mind! As time went on, I started noticing my other foot was turning purple, burning too. Not quite as bad as the other and not 100% of the time, but if I walked any amount of time, it would be so awful later on that day or evening. Then the left knee that I had surgery in prior to the diagnosis of RSD, but due to injuries from that car accident; then it started to burn and swell and turn purple! I didn’t know what was going on and at the same time, I had gotten somehow an infection of some sort in my mouth and then the RSD went to my mouth and now i have to be careful when it flares and I have prescription toothpaste and trays for my teeth made special for me . The dentist made these and i put flouride gel in them for 5 mins each time (supposed to be twice a day but I cant do that so i do it when i can) and it helps my teeth not decay b/c I have a hard time brushing even though I still do anyways. The RSD has since gone to my upper back and no one can rub it or when I shower it feels like bullets pelting my back and the nice,soft towel feels like sandpaper! Then the worst part besides the right foot being the worst part, was this past April 2009. One evening my head hit the desk soooo hard that it felt as if someone had come up behind me and pushed it down as hard as possible onto the desk. I didnt actually “feel” a person or a hand or anything, but my head just went “plunk” down onto the desk. I started to cry because it hurt more than anything. I was terribly bruised, black eye and huge bump. I am on Coumadin already (a blood thinner for a problem with my heart called “atrial fibrillation) so it bruised something awful and hurt even worse than it looked. Since that day things started a downward spiral again. My eye on the right side won’t blink but 20% and the left only 80%. MY eyes look very strange when looking at me when I’m talking now because one eye blinks and the other one doesn’t. I have certain days where the eye(s) flare up and get all swollen and red and hurt and burn and stab with pain. The pain in my eyes (right worse) is very strong and burns, burns, burns!! Guess what? I have been to an Opthymologist, neurologist again, my GP and now they’re sending me to a Neuro-Opthymologist next week. The first three Dr’s seem to agree with me ,that RSD has now spread to my eyes. Though the new neurologist told me that “RSD spreads very rarely..hmmm” ..I’m not sure where he got that from , but I’ve done my own research and it does spread 70% of the time according to the things that I have read and the people i know who have it! Now I’m getting sores on my lower legs that won’t heal and finding out that is also part of RSD. I have ulcers on my right foot that won’t heal and I have cream after cream to soothe it for 5 minutes,but that’s about it.

I have a great GP and I am on a moderately good pain regiment now. I have good days and bad days. I have lost so much I lost my cousin who used to go with me to breakfast and shopping and things. After the car accident she said to me :”I can’t see you anymore”….I asked her “why not? what did I do?”…she said “seeing you in pain like this makes me sad, when I’m sad it brings me down and when I’m down it brings my family down so I cant see you anymore”….I’ve run into her at a few family outings and funerals. I’ve tried to “apologize” for whatever I don’t even know what I did?? I tried to email and talk to her. She still won’t talk to me to this day and I never ever said or did anything to her ever that was not kind.

So there you have it..this is my journey with RSD/CRPS. I had to mention the car accident because it does have its place with all of this. I got a Traumatic brain injury and something called “Dysautonamia” from the car accident/brain injury. I also found out that a large percentage of people who have RSD , also have “Dysautonamia”. It is when your Autonamic nervous system shuts down and doesn’t work anymore. It includes : memory,vision, heart rate/blood pressure, gut, motility, many other bodily functions! I had to see a Neuro-Cardiologist, a world renowned Dr in Toledo,OH at the University of Toledo Medical Center and had to get a pacemaker etc…

I’m very lucky to have a wonderful team of Dr’s and a wonderful husband,Craig, of 17 years now.  It’s not the quantity of people in your life that matters, but the quality. I have a great GP and some others. But I have the kindest, most loving husband who is gentle and helpful and wonderful.  I am blessed to have him and some dear friends that are always as near as a phone call. We just had a beautiful wedding for my youngest daughter and I had a bridal shower for her and she married a really nice guy. They are so cute together. They are busy and live an hour and half away, but they have their young lives to live right now.. I pray for the day that my other daughter & I can be mended in our hearts and be even better than what we once had been!. She has never left my mind, my heart or my soul for a moment!

2012-10-11 12.42.40

Walking Wounded, the song


Walking Wounded, the song.

 

I just wanted to say “thank you” for the writer of this song and her blog “Secret Angel”…thank you for allowing me to post this on my blog to help others. I am a sign language interpreter, but am disabled now. I became hearing impaired myself through “too many hits to my head, concussions and then a man ran a red light and I was unconscious and that was the last straw “…my brain suffered a TBI and I was in TBI rehab for 3 1/2 years. So I forget things, I get overly emotional and I sometimes have a hard time organizing thoughts and finding things…But I still love ASL (American Sign Language) as you can tell by my few performed songs in my own blog here. I did “Katy Perry’s – “ROAR”  and then I recently did A Great Big World w/Christina Aguillera song called “Say Something”…I would love to perform your song…

HE LIFTS US UP: A Call Out to the Abusers!


This is what I think …these words could be my own …but someone else wrote them; although I’ve been through it….-as for me in my life , there seems to be no end to it. I’m lucky to have finally found a loving, non-abusive spouse for these past 17 years. But the family, they never stop with the never ending cruelness, insults, ongoing abuse and never ending alienation from anyone that might love me…I re logged this authors post because it hit a nerve with me in my life!!!

ChristianBlessings

This statistic was given to me and I want to share with all of you…

70% OF ABUSIVE MEN COME FROM VIOLENT HOMES!!!

The cycle of abuse has to be broken for the sake of our future generations. We all need to evaluate our own hearts, scanning every part to realize how we actually treat people. Do we yell and scream and lash out verbally?  Do we act out in anger? Do we react with threats and  violence? Do we want our own children to be abused or violent abusers? Think about it!! The cycle of abuse has to be broken!!!! We need to treat people the way that we would want to be treated!

abuse

This is a different message…
A CALL OUT TO THE ABUSERS!!

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