Best Practices for Wearing Masks When Communicating with Deaf and Hard of Hearing People – ALDA
— Read on alda.org/best-practices-for-wearing-masks-when-communicating-with-deaf-and-hard-of-hearing-people/
Best Practices for Wearing Masks When Communicating with Deaf and Hard of Hearing People – ALDA
— Read on alda.org/best-practices-for-wearing-masks-when-communicating-with-deaf-and-hard-of-hearing-people/
I found this very awesome post on Facebook and it’s from a page called “It’s Okay Not To Be Okay.”
I have given them the credit for this beautiful piece. The credit for this beautiful woman’s *picture below, goes to the person who took it; and she is also named below.
This woman’s outlook on life, took my breath away! It made me cry! We all need to think more like she does!! When I become sad bcz of chronic illnesses and pain, I’m going to think of this amazing woman! I’m posting her story here, in hopes that it will also help you to be more positive. Especially during rough times such as political unrest and a pandemic! Let’s keep in mind what truly matters.
This 92-year-old, petite, well-poised and proud lady, who is fully dressed each morning by eight o’clock, with her hair fashionably coiffed and makeup perfectly applied, even though she is legally blind, moved to a nursing home yesterday. Her husband of 70 years recently passed away, making the move necessary.
After many hours of waiting patiently in the lobby of the nursing home, she smiled sweetly when told her room was ready. As she maneuvered her walker to the elevator, I provided a visual description of her tiny room, including the eyelet sheets that had been hung on her window. “I love it,” she stated with the enthusiasm of an eight-year-old having just been presented with a new puppy.
“Mrs. Jones, you haven’t seen the room …. just wait.”
“That doesn’t have anything to do with it,” she replied. “Happiness is something you decide on ahead of time. Whether I like my room or not doesn’t depend on how the furniture is arranged, it’s how I arrange my mind. I already decided to love it. It’s a decision I make every morning when I wake up. I have a choice;
I can spend the day in bed recounting the difficulty I have with the parts of my body that no longer work, or get out of bed and be thankful for the ones that do. Each day is a gift, and as long as my eyes open I’ll focus on the new day and all the happy memories I’ve stored away, just for this time in my life.”
She went on to explain, “Old age is like a bank account, you withdraw from what you’ve put in. So, my advice to you would be to deposit a lot of happiness in the bank account of memories Thank you for your part in filling my Memory bank. I am still depositing.”
And with a smile, she said: “Remember the five simple rules to be happy:
1. Free your heart from hatred.
2. Free your mind from worries.
3. Live simply.
4. Give more.
5. Expect less, & enjoy every moment.
*Photograph by Karsten Thormaehlen
This is for my fellow chronic pain warriors (& me)…fighting the ignorance of those who hold the power to help Cpp’s but they’re pushing massage & other complimentary therapies instead! Opioids clearly help some of the pain community. Let our Drs choose what works best for each individual.
We are in pain & we may be “broken”-but we are worthy, we are strong & we are beautiful! Don’t ever give up! No matter how many people try to put you down or try to “break” you even more!!
Please feel free to follow me on YouTube @ASLSuzyQ for ASL(American Sign Language) song covers & to learn about Deaf History & Deaf culture.
HERE ARE SOME LINKS TO MORE OF MY ASL SONG COVERS ABOUT OUR JOURNEYS WITH ALL DIFFERENT KINDS OF PAIN-BUT BEING STRONG THROUGH IT ALL!
1) “This is Me” (from Greatest Showman)
2) “Speechless” (from Aladdin)
Speechless from Aladdin
3) “Keep Holding On” by Avril Lavigne
4) “Fight Song” by Rachel Platten
“Fight Song” by Rachel Platten
5). “We All Bleed The Same” by Mandisa
We All Bleed The Same by Mandisa
6) “Into the Unknown” from Frozen 2 by Idina Mendel/Aurora
Into the Unknown by Idina Mendel & Aurora from Frozen2
7). “I Dare You” by Kelly Clarkson
8). “Piece By Piece” by Kelly Clarkson
9). “Stand Up” by Cynthia Erivo
10). “Broken & Beautiful”
There are many more ASL cover songs for when you need to feel strong! Don’t ever give up!
*Please feel free to read a small part of my story in the paragraphs beneath each video
If you are a person living with high impact or intractable pain, this is going to affect you greatly.
Please read the article below and see what our government wants to do with persons after surgery. Also how they want to treat the chronic pain population! This is ludicrous and it’s full of horrible lies! What needs to happen before someone in power, with an intelligent mind, helps us?
This is a great article from Rikki Poynter and it hits home with me, too! Many of my friends who live with either Deafness/Hearing loss &/or disabilities requiring the use of wheelchair,walker or cane etc, may feel a connection to the stress that Rikki Poynter shares in this article.
Some of us are feeling also the stress of not have accessibility to proper medical care for our high impact chronic pain illnesses. This has been constant since the CDC Guidelines were implemented in 2016, without any pain physicians present at the discussions.
I wanted to share this article because I can feel for her experience and so many people don’t “get it”. Here’s the article: http://www.rikkipoynter.com/articles/event-accessibility
For information or questions regarding the ADA or “Americans With Disabilities Act”, please visit: Link to the ADA website
You can follow Rikki Poynter at Twitter, Instagram and Youtube at: https://www.youtube.com/user/rikkipoynter
This is an email that I received from a chronic pain patient, Chuck Malinowski. He wanted to let me know about his experience with Suboxone/Bupenorphrine. He asked me to share it, after he had read my 2-3 articles about these harsh drugs that are being forced upon chronic pain patients at this time. The side effects from these partial opioid agonists, are much worse than our average opioids. While their analgesic effects are very low. They don’t do much in lowering the high impact pain that many people with long term, painful chronic illnesses live with. They have, however been proven to take the edge off of some lower pain illnesses in drug addicts who have to take it bcz they are unable to take “regular” opioids. The data suggests that it only really helps a little bit with addicts who need a bit of pain relief.
All of my research is backed up and linked to articles and research. Some is straight from the manufacturer of Suboxone/Bupenorphrine:
Here are some links to more articles where I researched information and came to these conclusions:
(*This is where I got some of this information):
Articles that Explain The Bad effects of suboxone, bupenorphrine etc.
***Below is an article straight from a patient:
Here is one Testimonial:
“Absolutely do not let your doctor put you on buprenorphine.
DO. NOT. DO. IT.
Unless it is an absolute life-threatening medical emergency, do not ever allow anyone to put you on either buprenorphine or Suboxone, which is a medication made with buprenorphine and even worse, and much more expensive.
Buprenorphine causes such a severe, and rapid physical dependency that after only using a comparatively small dosage, 16mg per day, for a single month it will take you a minimum of four, but probably five or six months of absolute hell to get off of.
This is not a medical opinion, or medical advice, this is the reality of what I am now living with, and have been for more than 10 weeks.
I was put on buprenorphine when my implanted pain pump ran out of morphine sulfate and I went into severe acute opiate withdrawal.
It was basically an emergency situation, the level of medication for my pain pump was the oral equivalent of 160mg of morphine a day, it was severe opiate withdrawal.
I did not have an addiction to opiates because this was intrathecal morphine – intrathecal delivery is when the medication is delivered in liquid form directly into your spinal column – but my body had a tremendous physical dependency.
Even so, I seriously regret being put on buprenorphine even if it was on emergency basis.
I was on 16mg of buprenorphine per day for five weeks after getting out of the hospital following treatment for severe acute opiate withdrawal.
The treatment was being put on Suboxone, later changed to just straight buprenorphine.
Within three weeks I started experiencing severe migraine headaches, ear aches, severe abdominal pains, diarrhea, severe sleep disturbances in the form of horrific nightmares – nightmares so bad I was afraid to go to sleep.
I also experienced drastic changes in body temperature, one minute I felt like I was roasting alive, the next minute I felt like I was freezing, sometimes I felt both at the same time.
I have been trying to get off of buprenorphine for 10 1/2 weeks now. I have been using every trick in the book to manage the horrible withdrawal symptoms. Herbal supplements, herbal teas, detox supplements, vitamins, OTC medications, etc.
And the withdrawal symptoms are truly horrible, even when simply reducing your dosage by 25%. It’s just as hard to cut your dosage from 5 mg a day to 4 mg a day as it is to cut your dosage from 16mg a day to 12mg a day.
This means that the closer you get to 0mg a day the harder it is to reduce your dosage, because you have to keep doing it by a relatively small percentage, 20 or 25% day over a period of two or three weeks.
It is so bad it gets to a point where you have to cut from 2mg per day, to 1mg per day – if you can even tolerate that big a cut at that point – to 1/2 mg per day, to 1/4 mg per day, to 1/8 of a milligram per day – and, according to my doctor, it can take weeks to do it. It took me 3 1/2 weeks of working at reducing my dosage from 6mg a day to 4mg a day before I could tolerate 4mg a day. It was extremely difficult, and painful every step of the way, and even so, I am suffering horribly.
Today is day number seven at 4mg a day. The last week has been unimaginably horrible – the entire process is unimaginably horrible – today is horrible, and I expect that I will feel like this for another week or two before I am stable at 4mg a day.
Once I am stable – comfortable – at 4 mg a day I can try to start cutting my dosage to 3mg a day, and the entire nightmare process described below starts all over again, although in truth it never really stops it only gets less horrible, until you try and make your next dosage reduction.
At times feeling like I am burning alive, I feel like I am on fire inside and out. I frequently feel like somebody has put some horrible mind-bending drugs in my drinking water. Uncontrollable shakes and tremors. Uncontrollable whole body spasms were every muscle in my body suddenly goes completely rigid. Diarrhea. Severe sleep disturbances from absolutely horrible nightmares – my neuropsychologist tells me that nightmares are very common with buprenorphine. And you only have the nightmares if you’re lucky enough to be able to sleep in the first place. Or if you can even stay asleep because you’re going through such drastic changes in body temperature that you are frequently waking up and turning the fan on, or turning the fan off, or getting rid of the blanket, or pulling the blanket back on.
Or, if you try and reduce your dosage a little too much, a little too quickly you wake up drenched in sweat with your clothes soaked through.
If you try and reduce your dosage a little too much, a little too quickly all of the above mentioned withdrawal symptoms are magnified several times over and it literally becomes a living hell. It can be as bad as full-blown acute opiate withdrawal from a high level of opiates. These are both things that I have lived through, so I know this from personal experience.
Simply trying to get off of buprenorphine by slowly reducing my dosage over the last 10 1/2 weeks at a time has unquestionably been the single most difficult, painful and horrific experience of my life, aside from more than 10 years of Reflex Sympathetic Dystrophy.
I have advanced Reflex Sympathetic Dystrophy, also known as Chronic Regional Pain Syndrome. RSD/CRPS – as well as Trigeminal Neuralgia – has been called the most painful condition there is, it is also sometimes referred to as ‘The Suicide Disease,” so when I say that getting off of buprenorphine is the most horrible and painful thing I have ever experienced that really means something.
I’ve already I’ve been weaning myself off buprenorphine for 10 1/2 weeks and I still have another 12 or 16 weeks to go – if I’m lucky. It may take even longer. And from what I have read, even once I have stopped taking buprenorphine completely, I can expect another month or two of significant withdrawal symptoms in the form of depression, anxiety, lethargy etc.
It is my personal opinion, based on more than 15 weeks of personal experience of being on buprenorphine, and 10 1/2 indescribably horrible weeks of trying to get off of buprenorphine, that this is a horrible medication, and for a chronic pain patient to use it as an alternative to opiates is a horrible mistake.
It is my personal opinion, based on personal experience, that putting chronic pain patients on either buprenorphine or Suboxone and telling them that it is a safe and effective alternative to opiates is a horrible scam.
It is my personal opinion, based on personal experience, that putting chronic pain patients on either buprenorphine or Suboxone and telling them that it is a safe and effective alternative to opiates is not only medically irresponsible, it is an outright lie.
Getting off of 40mg of hydrocodone per day after six months took two weeks and was no more unpleasant than a mild case of the flu.
With buprenorphine, it took 3 1/2 weeks to simply reduce my dosage from 6mg a day to 4mg a day and it was freaking horrible. I am still having extremely unpleasant withdrawal symptoms after being on 4mg a day for a week, and I expect this will continue for at least another week before I am stable.
STAY. THE. HELL. AWAY. FROM. BUPRENORPHINE.”
Hello my friends! For this blog post you should probably grab yourself a cup of coffee and sit down to read this short story! I’m sorry that this article is more like a “short story” than a blog post! It’s twice as long as any of my normal posts would be. But this just meshed and I wanted this information available to you.
In my opinion, I would prefer no treatment than be forced to take some of these harmful/ horrific medications. By the way, I researched them and they are still not FDA approved for chronic pain patients. In September 2018, a form of Bupenorphrine, a sublingual film, was FDA approved “for opioid use disorder. ” It was also approved for the maintenance of “opioid dependence”. But if your physician prescribes it for your chronic pain, “off label”; and you are not a patient with “Opioid use disorder” or an “Opioid abuser” then you may possibly get a very low analgesic effect. Might as well take that Tylenol they’ve been pushing at us? It will help just about as much. Well, you all know what I mean, right?
Here’s another thought: Opioids, (*which are being demonized by our government now) can have a few side effects but normally they go away within a week or so after taking them. The side effects can be:
Here are the list of side effects for the FDA approved Bupenorphrine and Naloxone sublingual film (called Cassipa): Proof of these Side effects of this medication online
**THESE PRODUCTS MAY ONLY BE PRESCRIBED BY DRUG ADDICION TREATMENT ACT (DATA)-CERTIFIED PRESCRIBERS. With this list of side effects and all of the warnings, how or why is is supposed to be OK to use, but other
***BELBUCA: is another type of “opioid”, similar to the above, but without the Naloxone. It is also a partial antagonist. (**It is very different from the kind Opioids that most pain patients are familiar with. The opioids that we know are able to help alleviate high amounts of daily, round the clock, high impact chronic pain).
I visited the Belbuca online and their website has a bunch of videos showing people with chronic pain and how this medcation has supposedly helped them (they are paid actors most likely). The list of effects appear to be much longer and worse, in my opinion. The list of bad effects on the majority of opioids that many chronic pain patients have safely taken for years; or even decades, appears to be much less toxic and life altering or even, threatening. On that same page, they say that “Methadone maintenance is helpful for people who don’t do well with buprenorphrine. But people (mainly addicts) have to visit a clinic daily to recive that treatment.” Our favorite guy (*cough cough), Kolodny, says now that “Suboxone is a viable treatment akin to buprenorphrine.” *Also, did you know that once you take Bupenorphrine or Suboxone, you will be labeled an “addict” & no longer a chronic pain patient/warrior! See: Opioid Addiction Treatments). Kolodny ‘s trying to not only rid the USA, but the world possibly, of opioids and replace them with much more harsh opioids! Suboxone which he calls “akin to buprenophrine” has been proven to have none or a very low analgesic effect. If taken, this so called medicine, LABELS you for life as an “ADDICT”. Yes, you are labeled for life as an addict if you accept Kolodny’s “get rich scheme” & take these harsh addiction medications! They are very different from normal pain medications that most people with long term chronic pain illnesses have been doing well on, for decades! Suboxone & Bupenorphrine also have a long list of worse than horrible side effects. Why & how are these OK to give to sick people living with horrific amounts of daily pain? People who are seeking any kind of reprieve, relief from their painful existence in hell.
Please be aware of this crooked switch to these harsh addiction medications. Please understand that the cowardly physicians, who prescribe these meds, do not have the patients best interest at heart. Instead they’re lining Kolodny’s and others wallets and bank accounts.
All the while we are suffering and being lumped together with addicts (yes, they need help too. But that is their story to tell). I have testimonials a mile long from several persons who had been prescribed these harsh addiction medications & who’ve taken one form or another of Bupenorphrine or Suboxone. They said “it was the worst medication they’d ever taken and it has horrific side effects that are unrelenting & never ending. IF you dare try to go off of it, or taper down (*as you can do with the regular kinds of opioids that most patients are familiar with), those medications tend to pull you in even deeper. They’re designed to keep you addicted . They work against your body and majorly increases your pain so that you won’t stop taking it. You cannot ever go off of it “cold turkey”. If you try, then you may experience withdrawals that I’ve been told are hellish. Worse than anything I’ve ever heard about regarding opioid withdrawals.
In a future blog post, I will try to add more & organize them. I’ll let you read what others have sent to me. I have permission from several persons because they want you to know what they have had to endure; in order to save you from going through the same hellish experiences.
DISCLAIMER: *I AM STATING THAT THIS MEDICATION IS NOT GOOD FOR HELPING THE CHRONIC PAIN PATIENTS! BUT IT MAY BE A “WEAK ANALGESIC” THAT COULD HELP AN ADDICT, A DRUG ADDICT, WHO LIVES ALSO WITH CHRONIC PAIN! That’s what it’s good for!!
Here’s a link to Pat Anson’s recent article regarding the sentencing of former CEO & President of The U.S. Pain Foundation, Paul Gileno!
What do you think? Has justice been served?
I found this article not too long ago. I thought you might want to read it if you are a high impact chronic psin patient or anyone living with psin on a daily basis.
Indivior Inc. Indicted for Fraudulently Marketing Prescription Opioid | USAO-WDVA | Department of Justice
— Read on www.justice.gov/usao-wdva/pr/indivior-inc-indicted-fraudulently-marketing-prescription-opioid
I just wanted to let you know that after a year of contemplating what I wanted to say, I wrote my thoughts about what happened between U.S. Pain Foundation & me last year in September 2018.
During my time as a very active Health/Pain Advocate, I achieved a few proud moments that I would really like to share with all of you:
1: I was awarded a “Special Tribute” from the Governor of the state of Michigan (Governor Rick Snyder) in 2016
2: I was the runner up finalist for 2013 WEGO Health “Unsung Hero” Award
3: I have over 42 published articles with the National Pain Report.
4: I was awarded the “US Pain Ambassador of the year award 2016”
5: I was certified as an in-person support group leader & ran a support group in my city for chronic pain & RSD/CRPS
6: I was accredited in a pediatric course for RSD/CRPS via AMEDCO & RSDSA
7: I was appointed to the Board of Directors for the U.S. Pain Foundation
8: I was honored in my hometown, with a Newspaper article
I didn’t do any of what I did, in order to get something in return. But these were amazing rewards after so much time went into my multiple US Pain Foundation projects, my writing, videos, Support Groups, getting proclamations & doing many many Awareness Events for USPF, RSDHope & RSDSA.
The Link to my 1 minute You Tube Video (1 minute long)
I’ve been contemplating writing my side of the story; after severing my ties with the US Pain Foundation in September 2018. I have my story written and published. If you’d like to read it, just go back one blog post before this one.
Below are a few photos that remind me to keep going when I sometimes feel like giving up. I am strong and so are you! We can do this together!
A not-so-crazy couple with 15 cats