I’ll be writing a post in the next few days, but it is with a heavy heart that I’m posting this sad news today. I’m happy to still have MomO., Keith & Anjanette as my “family” & as my friends. But I’m very sad to see this non profit go. Almost every fundraiser and almost all of my RSD/CRPS awareness jewelry monies were sent to them. I first had a mentor from <a href=”RSDHope.org”>RSDHope.org</a> when I was originally diagnosed in 2007, with RSD/CRPS in my right foot. Then I became a mentor for them and got to first know Mom O. And Keith’s sister, Karen. Now over the years we’ve become “family” and good friends for the same cause! I’ll be writing a proper post, but here’s their closing post!American RSDHope closing its’ doors – American RSDHope
There’s a new proposed tax by Senator Joe Manchin from W. Virginia & 6 other Democratic Senators! They’re being supported by Hillary Clinton! This tax is called “The Budgeting for Opioid Addiction Treatment Act”. It is also known as “The Lifeboat Act”! It’s no “lifeboat” for anyone except for the big addiction treatment centers who stand to make millions of dollars yearly!
These Senators want to make the chronically ill and those persons suffering with the highest amount of pain, pay for addicts to get help for their addictions! Why on earth should pain patients have to pay for anyone to get treatment, while they’re struggling with medical bills as it is??
Would it be OK then, to force people taking anti-depressants to pay for an eating disorder treatment center because some of them possibly also have an E.D.? Should Insulin dependent Diabetics pay for new Dialysis centers ? Then what next?
It’s not good, fair or proper to force a tax & punish innocent people who are already struggling & suffering! It’s about as ridiculous as that “Device Tax” that Pres. Obama had proposed last year that got shot down, luckily before it ever started!
When will “they”get it through their heads that pain patients who suffer with chronic pain day after day, are NOT addicted to their Opioid pain medications!!?? They do not get any type of a “high” from these meds. Suppose these Senators took the time to ask anyone suffering from debilitating pain, if they like these medications; they’d find that the answer is “No”!
Chronic pain patients are not addicts! An addict doesn’t just depend on their Opioids, but they crave it, obsessively think about it and seek it out for stockpiling! The difference again is that persons in pain, daily chronic pain; don’t want to take it and they don’t think about it. Their bodies may be physically dependent on the Opioids, but their brains couldn’t despise them more! But don’t misunderstand me please! The pain patient is grateful for this medication that will give them relief! Also please note that relief is very different from a high!
This proposed tax is ludicrous and just crazy! It will increase the suffering of those who already suffer every single day of their lives!! I have noticed that many persons who’ve lost someone that they love due to an overdose; are supporting this proposed tax! I have lost someone I cared about due to an overdose! Though I’d never dream of punishing others because of my inner pain! Chronic pain patients did not kill my friend years ago! My friend didn’t act responsibly, took more pills than what was prescribed for her and killed herself by accident!
Don’t punish chronic pain patients, cancer patients, persons with MS, RA, Degenerative Disc Disease, failed back syndrome, Complex Regional Pain Syndrome, Arnold Chiari Malformation and /or many other illnesses that can cause sometimes unbearable daily pain! It’s not American! It’s not right or fair and it will not help anyone except for the Government and the addiction treatment centers!
Please go to my Facebook page called “People In Pain Unite” to get more information on this Proposed tax. Please place “#peopleinpainunite” on everything that you write or post against this tax or against the “Lifeboat Act”! Please help us by writing to your Senators and the Senators listed on my Facebook page called “People In Pain Unite”! Write letters to your Governors, and even to President Obama. Please watch my videoes below, to get a few minutes of information regarding this “Budgeting for Opioid Addiction Treatment Act”! See how YOU CAN HELP US!! Help us STOP THIS ACT/TAX before it even begins!! Lastly, please SHARE and contine to share this post, my Facebook page and these videos!
Thank you so much for your time! Lastly, please sign the petition named in the photo below. Go to that website and sign this petition to STOP this “Lifeboat Tax”!
People ask me sometimes “how can you do this? How do you do that with systemic/full body CRPS and several other high pain illnesses ? How can you go here & there when you’re in pain & you don’t feel well? Don’t you get so very fatigued”? I have had other chronic pain patients accuse me of “not having pain as bad as theirs”, because I try to do different activities. Yes, I’m in pain daily, whether I stay at home or if I go and do a little something that will either make me smile; or where I can make someone else smile. My pain is not me and I have choices to make. I can choose to use just my cane, walker, motorized scooter or my wheelchair. But every day that I am alive, I try to do something, anything. I don’t believe in letting the days go by without experiencing the taste, feel, touch, smell, sights & any sounds possible to enrich my life in any way that I can. As recently as this past Summer 2016, I was diagnosed with S.I.B.O. and Gastroparesis. These make eating unpleasant and going out for dinner almost impossible. But you notice that I say “almost”, because I still choose to go out to eat as a social experience with my husband and/or friends. I just choose wisely or have something to drink. I try to convince myself that it’s the experience of getting out and getting up.
Yes, I’m in pain and even the medications don’t take that away completely. Secondly,”yes”, I am exhausted after an outing, but it’s worth it because my bed, my chair and “my comfortable place” will always be there when I cannot do it for another moment. But my husbands hand, my (2)daughters love, the giggles, smiles & sweet hugs of my granddaughters; they might not always be there! I refuse to let fear, pain & fatigue ruin or rule my life! There are those days that I do take to my bed or the couch….but those are resting days, in between the good stuff!
I have lost family and many friends, due to the fact that I may have to change plans at the last minute. As I write today, about trying to go places and do a few things that are enjoyable; I must reiterate that I do have to listen to the chronic fatigue and pain when it tells me that I must not do another thing. When it lets me know that I’ve “used up all of my spoons for the day (see the “Spoon Theory here:https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/) and it’s time to stop” (for now). We all have to listen to our bodies, meaning that there will be days and maybe several in a row; when we are unable to do something notable. But if I can’t go out, I do try to at least mingle or socialize each day to keep up my spirits. Some days it is via social media and the support groups that I run. Other days it can be hanging out with my daughters/granddaughters; or just sitting quietly with my kitty cat on my lap and my husband reading next to me. I just try to do at least one small “social” thing daily. Every person has their own way of being content or even happy. Some like to do Yoga, others enjoy reading or going shopping. I just try to do anything, no matter how small it might be; each day. Some days taking a shower and doing my hair is my achievement. If that’s all I can do on any given day, I give myself credit for doing “something”. It takes so much out of us, just to shower and do our hair and/or makeup. It’s incredibly exhausting when you fight daily pain/fatigue. Persons who don’t understand chronic pain would not be able to understand it.
I refuse to let the “bad stuff” rule my life! I might get sad or down like everyone does from time to time; but then I pick myself up by the bootstrap and try again in a few hours, tomorrow or a couple of days! Pain and fatigue will try to win my battle but My heart and soul will win the war!
*Written by Suzanne B.Stewart- 6-11-2016 (chronic pain patient with severe systemic CRPS, Autonomic Neuropathy, Polyneuropathy in Collagen Vascular Disease, PTSD, A-fib with pacemaker for Sick sinus syndrome, long QT syndrome, Asthma, Dysautonomia/POTS, CKDII, Arnold Chiari Malformation I, long thoracic nerve neuropathy, h/o CVA & M.I., Degenerative Disc Disease, Rheumatoid & Osteoarthritis…plus multiple injuries/surgeries s/p a MVA in 2002- including a TBI & 3 yrs of TBI rehabilitation!)…
**I am a Health Advocate/Activist, Chemo-angel, card angel, prayer angel, special assignment angel, -Mentor for Newly DX CRPS patients, blogger/Writer, …..
I found this letter on a CRPS support group. I never take from another site without giving credit to the author. But this one says “author unknown”. I would like to give my fellow Chronic pain warrior, Sara W. Credit for finding it and posting it. I wasn’t sure if she’d want her name posted on my blog, so I only posted her first name and last initial for now unless or until I hear differently. I know we are all here to help each other and all of you! This was a pretty accurate description of this horribly painful disease or Neuro-Autoimmune disease! So here it is…& please feel free to share if it will help you to let your family and other healthy friends and family members to understand CRPS (Complex Regional Pain Syndrome) better:
Hi. My name is Complex Regional Pain Syndrome… some friends who have known me for a very long time call me RSD or CRPS…… I’m an invisible inflammatory disease that attacks your sympathetic nervous system.
I am now velcroed to you for life. If you have CRPS you hope for remission but there is no cure.
I’m so sneaky–I don’t show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only test to rule out other things.
Others around you can’t see me or hear me, but YOUR body feels me.
I can attack you anywhere and anyway I please. And, I will. Constantly.
I can cause severe pain or, if I’m in a good mood, I can just cause you to ache all over.
Remember when you and energy ran around together and had fun?
I took energy from you, and gave you exhaustion. Try to have fun now.
I can take good sleep from you and in its place, give you brain fog and lack of concentration.
I can make you want to sleep 24/7, and I can also cause insomnia.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal.
I can cause one limb to change color, look bruised, feel super sensitive randomly for seemingly no reason.
I can also give you swollen hands and feet, swollen face and eyelids, swollen everything.
OH, and just because I started off in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body I so choose to torment. I can, and likely I will.
I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That’s me. Crying for no reason? Angry for no reason? That’s probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.
I can make you literally scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife. Making you look crazy is fun for me.
I can make your hair fall out, your nails become dry and brittle, cause acne, cause dry skin, the sky’s the limit with me.
I can make you gain weight and no matter what you eat or how much you exercise, I can keep that weight on you. I can also make you lose weight. I don’t discriminate.
Some of my other inflammatory disease friends often join me, giving you even more to deal with.
If you have something planned, or are looking forward to a great day, I can take that away from you. You didn’t ask for me. I chose you for various reasons: That sports injury, needle stick,, or that car accident, or maybe it was the surgery to correct a bone problem.. Whatever the cause, I’m here to stay.
I hear you’re going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.
You will be put on the wrong medication for you, pain pills, sleeping pills, energy pills, told you are suffering from anxiety or depression, given anti-anxiety pills and antidepressants.
There are so many other ways I can make you sick and miserable, the list is endless – If your body is all of a sudden dealing with things that were never issues before…yep…. that’s probably me.
Shortness of breath or “air hunger?” Yep, probably me.
Bone density problems?
Can’t regulate body temp and poor circulation?
Constant ‘electric jolts’? Yep, probably me.
I told you the list was endless.
You may be given a TENs unit, get massaged, told if you just sleep and exercise properly I will go away.
You’ll be told to think positively, you’ll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you’ve seen, just how debilitating I am and how ill and exhausted you really feel. In all probability you will get a referral from these ‘understanding’ (clueless) doctors, to see a psychiatrist.
I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.
Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.
Even after explaining to those you interact with regularly that I’m the most painful disease known to man, and there is no cure, they will say things like “I hope you have a speedy recovery”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.
Some of them will say things like “Oh, you are just having a bad day” or “Well, remember, you can’t do the things you use to do 20 YEARS ago”, not hearing that you said 20 DAYS ago.
They’ll also say things like, “if you just get up and move, get outside and do things, you’ll feel better.” They won’t understand that I take away the ‘gas’ that powers your body and mind to ENABLE you to do those things.
Some will start talking behind your back, they’ll call you a hypochondriac, while you slowly feel that you are losing your dignity trying to make them understand, especially if you are in the middle of a conversation with a “normal” person, and can’t remember what you were going to say next. You’ll be told things like, “Oh, my sister had that, and she’s fine on her medication” when you desperately want to explain that I don’t impose myself upon everyone in the exact same way, and just because that sister is fine on the medication SHE’S taking, doesn’t mean it will work for you.
They will not understand that having this disease impacts your body from the top of your head to the tip of your toes, and that every cell and every body system and organ can be effected.
The only place you will get the kind of support and understanding in dealing with me is with other people that have me. They are really the only ones who can truly understand.
I truly try not to complain or ask for help often; but I’m having a rough pain night… When I feel like this I find something that makes me feel good and I try to do it, read it, play it, sing it, sign it Etc. Tonight I can’t sign it so I watched myself sign the ASL cover for @Hold On” by Wilson Phillips… It did make me feel a little better if only for 3-4 minutes. Then I thought that I would share it with you! Because if I’m having a rough night, others must be as well. You see, I’ve tried to make some lemonade when life’s tosses lemons at me!
I used to be a sign language interpreter for the Deaf . I graduated from university with my degree in “Sign language studies / Interpreting”. I was a single mom (but I’ve been remarried now almost 20 yrs to my soul mate), worked full time at university of Michigan hospitals as an interpreter for patient services. I interpreted for Deaf students at 2 school systems “Magnet” Hearing impaired programs & at Madonna University in the classrooms.
In 2002 when a man ran a red light I lost so much: not only was my car totaled, but my body & my career. I suffer from chronic intractable pain. I’ve had multiple injuries, surgeries (8), a heart attack and a stroke! I suffer from Dysautonomia / POTS / Autonomic Neuropathy, polyneuropathy in Collagen Vascular disease(like the vascular EDS), Arnold Chiari I, Sick Sinus Syndrome (with a pacemaker), S.C.I.D. (severe combined Immune Deficiency disease), RA ,OA & the worst is CRPS, or aka “Complex Regional pain syndrome”. The CRPS started in my right foot after a surgery. It then spread to my right knee, left foot & knee.
In 2013 I had what was supposed to be a simple pacemaker replacement surgery. It turned into a long & difficult pacemaker and pectoral muscle rebuild surgery! Afterwards at my 6 week post-op check up, my CRPS was reassessed by my Neuro-Cardiologist. He said that it had progressed to” full body/systemic CRPS, severe & disseminated”.
My career was taken from me! I also suffered a TBI in the car accident and was in brain injury rehab for 3 yrs! Id been an Interpreter for the Deaf & Blind and now I’m hearing impaired & I have 2 hearing aids. I can’t process signals of spoken language the same as I could. My brain isn’t able to switch the words into another language whilst coming out of my hands & arms any longer. That connection was gone or at least now too slow for interpreting!
My short term memory is “in the toilet”, according to my neuro-psych tests. My love and compassion for helping people, especially children, is still in my heart but the injuries stole my career from me. I was so very sad! Then I thought “how lucky that it’s me because I know ASL fluently, I can read lips well & my long term memory is in tact. I remember all of the signs! Artistic ASL is emotional and beautiful. It has awakened the “old days” for me when I lived in Az & worked at school for the Deaf with Deaf pre-schoolers! It has reminded me of when I was involved in 2 Drama groups w/choreography in ASL to songs! One was called “Silent Impressions Productions”, we put on shows at ASU! The other group was called “Silent Praise”, & we Interpreted at church, did interpretive dancing & signed to beautiful songs at the Neumann center at ASU! I was lucky to still have my gift yet in a different way. Watching songs done in artistic ASL is emotional and so beautiful.
I started signing beautiful songs again, which made something wonderful stir inside of me once more & brought the sparkle back to my eyes!
I started a “You Tube” page (ASLSuzyQ) and a facebook page (I Luv ASL) for my ASL songs. thought that if I could be cheered up …then maybe I could cheer up others who are hurting, sad or both? So “Hold On”…Don’t give up and watch this & maybe, just maybe it’ll cheer you too!