I try to never judge anyone. In fact I’m open hearted/minded & I support most everyone. Also, I do have friends and family who have different opinions than mine. I would not stop being friends with someone or disconnect my friendship with them, because they have a different point of view. This has been a been a horrible time for most everyone in the world right now. We each have the right to our opinion & to believe what we believe. If you don’t like me anymore because of what I believe- then I’m sorry. But I’m the same person I’ve always been I’ve not changed. I live in the USA & we have more freedoms than most any other country. I live here & I’m proud that I’m allowed to exercise my right to choose. I’m finding out who my true friends are. I feel closer to God more than ever before. I’m at peace with myself and that’s what matters most. I’ve been “afraid” to post this but I want to, because my husband & I made it. We are silent no more!
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
Have you always wanted to learn American Sign Language, but didn’t know where to start?
Well, the best place to learn all of the rules, parameters and the full language, is from a certified, Deaf ASL professor. You should do that if you are able to at all. You should also try to find a Deaf community to hang out with and go to Deaf events. Most of the communities are so amazing and we welcome all levels of ASL. We are excited for you to learn and happy to help. If you want to do that, but you don’t have the money or the venue to take those special classes; the next best place to start, is by heading over to YouTube.
There are several great places online where you can get started learning for no cost. The best and first, is Free ASL classes at Gallaudet . Next, I would say Lifeprint.com & Hantdspeak.com is another, but first I wanted to let you know that I do have some “ASL Basics- Vocabulary” lessons at my YouTube channel :
The important thing is that you don’t just learn vocabulary, although that’s a great place to start. You need to learn about the language, culture, community and its history! I do have several videos that are a little bit about each of these things. I have one video about “How to get a Sign Name”. There are other videos that include “Deaf President Now” movement in the 1980’s. Also the Sign Language community that was living in Martha’s Vinyard, Massachusetts; in the early 18th century until 1952.
I’ve been using ASL since I was 11 years old. I was babysitting and hung out with a Deaf family of 6. I grew up mildly Hard of Hearing due to recurrent ear infections and numerous ruptured ear drums with scarring. I always had to sit in the front of the class because I couldn’t hear well. Later, when my elementary school performed hearing tests, they informed my parents that I needed tubes in my ears because I wasn’t hearing well. I had multiple operations from ages 7 through 12 or 13 years. However, I did not get hearing aids until much later.
I went to Deaf school events, such football games at MSD (Michigan school for Deaf). I fit right in and felt comfortable. I later went to college and a group of 16 Deaf students in the dorms, were my best friends. We watched “General Hospital” with closed captioned. We went dancing and had some great times together!
Later on, I took a break for a year and a half & went to work at a school in Arizona with Deaf preschoolers. I loved that job. I was ecstatic to find out that I’d beaten out several other candidates for that position because of my skills. I also worked at a Deaf relay center called ADARA or “Arizona Deaf Assistance Referral Association” while I was living in Scottsdale.
After working there for about a year and a half, I went back home to finish my degree in Sign language studies & Interpreting. I then got hired as an educational interpreter for a school district and stayed on Interpreting for my Alma Mater. I got married, had two daughters and 8 years later I became a single mom.
I needed to take care of my girls and I immediately got a full time job with full benefits at the University hospital. I was a “Secretarial float” & wore a pager so that I could be notified when Deaf clients/patients needed me to Interpret for them. I loved my job. At that same time, I was an Interpreter at a school district nearby. I also volunteered as a pro tactile interpreter for Deaf/Blind medical screening events a few times each year.
I continued attending workshops at my Alma Mater and one in particular stands out in my memory. I met an amazingly intelligent and kind man who impacted the rest of my life, in a good way! His name is Art Roehrig and he was a Deaf/Blind guest speaker at one of my most memorable workshops. He told stories about how he’d grown up at a residential Deaf school and discovered that he had Ushers Syndrome, when he was a teen. He shared jokes and told us all about how he was living independently. He was a public speaking and later worked at and then retired from Gallaudet University. I still email with my long time friend, Art.
Back in 2002, I was involved in an Catastrophic car accident. A man ran through a red light and I suffered multiple injuries, surgeries and a Traumatic brain injury. I went through 11 surgeries up until now, and 3 years of TBI (brain injury) rehabilitation. I am left with many medical issues, including several high pain chronic illnesses, chronic pain, a stroke, heart attack and I received a permanent dual chamber pacemaker. Since the car accident, I’ve had vision issues, such as “halo vision” and a Convergence Insufficiency. Also, due to the TBI, my hearing declined even more. Prisms were placed in my eyeglasses for quite awhile and I was fitted with two hearing aids for mild.
My hearing declined over the years and the past 4-5 years it was rapidly declining more. I was waiting until my husband retired this past year, to be fitted with new hearing aids. They’re so expensive ($6,000.00), so I had to wait until we got new insurance, that would help with the cost.
When I went for the hearing test, they were concerned because my bilateral hearing loss had very much worsened. The right side was also now a mixed hearing loss and not only sensory-neural. The ENT ordered a CT scan & later in May 2019, I was diagnosed with an auditory tumor, called a Cholesteatoma. I had a very scary & difficult brain/inner ear surgery on July 26, 2019. I got two new & improved digital hearing aids. But they’ve been nothing but trouble with one thing or another since I got them! We had to pay $1,500.00 of the cost plus $150.00 for the ear molds (which now both have split on me and I’ve only had them for a few months). I’m ready to give up on them.
My hearing bones, eardrum & Mastoid were all diseased from the tumor. I received a Tympanoplasty, a Mastoidectomy (called a Tympanomastoidectomy) & a titanium Anvil, a prosthetic ear-bone. I’ve had Vertigo, a tingling, droopy top, right lip & my tongue has no sensation or taste on the right side, since that surgery this Summer. Oh… and I’m Deaf in my right ear and Moderate/severe HoH in my left ear. The deafness isn’t my problem. The fact that I have to live a lifelong battle with a reoccurring tumor, (that’s like a cancer in the way that it grows into the brain & can kill you. Also in the way it can repeatedly grow back); that is my problem! I have to go back in Spring 2020, for another of the same surgery, possibly. The micro Neuro-Otologist surgeon, told me “to be prepared”. This thing is the “Never ending story”. An endless battle that results in multiple painful & scary surgeries and deafness. But as I said, deafness is not the problem. I’ve been part of the Deaf community since age 11. It’s the lifelong battle with more pain & surgeries on top of the current pain…..that is the major issue for me.
If you’d like to follow me in social media, I will leave the links for you, below:
6) http://www.facebook.com/groups/ASLExpress (*This one is an ASL info, & help group)
My new Hearing aids:
Many people go through life and are never held up at gunpoint, robbed or in situations of extreme fear with shooters on a rampage.
I’ve now gone through this twice in my lifetime, thus far. We recently visited Waco, Texas to see our daughter, son in law and two youngest grandchildren (ages 10 months and 3 years). My daughter works at Baylor University and had decided to take us all to the dining commons for dinner on our 2nd night in Texas, (10-2019). We arrived, when suddenly, an alert was texted to her husband’s and her phones. The alert told us to “take shelter immediately & await further instructions”. My daughter started to panic as any mother of two babies would! I was frightened but tried to stay calm for her and the babies. We had to be separated from our husbands. They were sent to the men’s restroom & my daughter, the 2 babies & I were sent to the women’s restroom.
We awaited instructions but we were huddled into the corner of a handicapped stall. Finally, an employee came & told us we were on “lockdown” and we were all moved into the basement of the dining commons. There was stagnant air & it was difficult to breathe. I was very frightened but just continued to keep my daughter & grand babies calm. An employee, the cashier who I’d met as I entered the building; came around looking for me! She said that she was “drawn to me” & felt the need to come and check on me. She was so kind & she brought water downstairs for everyone. The water helped a lot and my granddaughter calmed down. Once we were all together as a family; in the basement, my husband was so good with the kids. We all tried to help them to be unafraid as we waited for the “all clear” alert. After about 55 minutes, we were given that alert and we were free to eat our dinner and go back to their home. We found out that about a half block away from campus, someone was shot. There were 3 people with automatic rifles on the run. The University took great care to see that we were kept safe during this ordeal. The staff was outstanding and very courageous.
It all brought me back to the time when I was 11 years old, in 1973, February. My parents, older brother & I went out after dinner to get my brother some Confirmation shoes. I was over looking at girls shoes, when suddenly I heard my father’s voice. He told me to come over to him. But a man had a gun pointed at my dads head! I didn’t know if I should try to run out of the store to get help? Or if it was not real? I remember saying aloud,”his “Candid Camera”? If I don’t cry, I get a prize?” My dad told me “Suzanne if you ever listen to me, do as I say right this moment! Come here right now!”
So I meandered back to the store room of the shoe store; where my family was held captive; along with another family of 4, a sales clerk and a manager. I saw my mother crying as one of the two men had their guns pointed at her face. The other man had his gun pointed at my dads head. I started to cry when they told my dad to empty his pockets and they proceeded to take my mothers wedding rings.(she’d gotten that engagement ring at age 14).
My dad grabbed the mans arm & said “Don’t you take those rings”! My mom yelled at him to get down and just do whatever he was told. I was crying so hard because the man said to my dad ,”shut up or I’ll put a bullet through your head”! I was really scared and my 13 year old brother stared emotionless as he was gathering every detail.
My mom passed out and the men grabbed my arm as if to take me with them. My mother laid on top of me as I was vomiting by this time! They kept telling my parents to “shut her up – or they would!” Finally, they ripped the phones off of the wall and made us lay down face to the ground. They said that we should wait 20 minutes before getting up. The manager somehow called the police. After they arrived, we told them as many details as we could remember. My brother stayed calm and gave them lots of Information.
After that, my mother was so scared & she didn’t want to go home right away. My Uncle, her brother, lived nearby. We went to his families home so my mom could calm down and feel better. Finally, we went home but I’ve never forgotten that day in my life. I had nightmares for a very long time and never was given a chance to discuss my feelings or fears. Lastly, I was blamed for the robbers taking my mothers wedding rings. My mother told everyone that as she was covering my mouth (because I was afraid, crying & even vomited as they robbers were saying “shut her up, or we will!!”), the robbers saw her rings sparkling and so they stole her precious wedding rings. Even though the robbers took all of the people’s wallets & jewelry etc., somehow it was my fault that those rings were taken off of her finger.
I guess I just wanted to share this with you all because the ordeal in Texas brought back some of those memories. After the robbery when I was only 11 years old, there were many more traumatic events that I experienced. If you know me or if you’ve had the chance to read the early posts &/or password protected posts in this blog; you’d realize how true this is. I was later diagnosed with PTSD, in or around my late 30’s. I finally received the help that was much needed. The Domestic Violence shelter and therapy has helped me over the years, to get past some of my fears. I still suffer today, but not nearly as much as I had in the past. Thank you for letting me share my experiences here with you today.
This PDF was sent to me by my friend & fellow advocate, David Cole. I wanted to find a good way to share it with everyone. Please let me know if you have any problems at all with sharing it.
Thank you and I wish each of you peace, Hope, love & Light. Let’s hope that the people in Washington state will help to share their awareness with the other 49 states. I truly pray that someone who is capable and willing to help the chronic intractable & high impact pain community reads this File. I hope that someone will help us. Please start to once again take care of the sick, disabled and those living with horrible daily pain.
Please read this file about the tide starting to turn in the state of Washington for the pain community. Our voices are finally being heard. Share this everywhere far and wide with News Media & On Social Media! We deserve to live some semblance of a life; same as everyone else. We are not “less than” other people who haven’t gone through tragedy or illness. We are worth it!
Hello Everyone !
Above is a 37 second update from my appointment today 6-10-19. Thank you for the outpouring of love ❤️ and support! You’re the Best followers/fans/friends ever!!
**ADDENDUM: SURGERY WILL BE JULY 26, 2019** they scheduled it today…. JUST WANTED TO UPDATE YOU ALL… sending peace, hope, love & Light…
Feel free to email me: email@example.com
Heres my Instagram post today too:
So I saw the Skull base/neuro/Ear surgeon today. I will be having the tumor removed soon. I will have a Tympanoplasty(they’ll reconstruct my eardrum using a “disc” made from cartledge & Skull fascia. This is to prevent this from returning. The 3 little bones needed for hearing are diseased. I’ll be getting possibly prosthetic bones? Also I’ll be having a “Mastoidectomy”! Removal of the diseased part of the mastoid bone. It may make my HOH/ “hearing”worse or same but must do this because if it gets into the brain it can kill me! It’s really scary! Many times people hear nothing afterwards, many times people get extreme dry mouth from damage to salivary glands during surgery. Many people get worse “white noise” or pulsating in ear after surgery. Many people get a strange taste for months or forever. They try to not injure the facial nerves by doing EMG during entire surgery, but it can happen… I’m honestly not scared of the white noise or pulsating or worse/same HoH —but I’m frightened of the brain surgery part. They say they’ll be conservative with my hair being cut but still a 2 finger radius around my ear will be cut… just wanted to update everyone. It will be in 2 months because it’s very slow growing tumor and may have been there my whole life?? But it takes time to get the 4 Drs clearances that I need and also his schedule is booked until then. Now I’m happy to have my Summer but still scared because I now have too much time to be thinking about it all!
There’s a tragedy that’s happening to not only me, but millions of U.S. citizens, almost daily now. It seems that each month, many pain Dr.’s are terrorizing, demeaning, denigrating & dropping their sickest patients who live with mostly life-long chronic & disabling painful illnesses. (I’ll be referencing my personal experiences for the purpose of this writing).
My Pain Management Dr. seems to be terrorizing me just a little bit more….then a little more etc.. When I started there several years ago, he had tears in his eyes, as I sat sharing my history and past test results with him. He told me he would take me on as a patient if I’d be willing to stop taking this one quick acting pain med. (*of course after 12 years taking it), my body went through physical dependence w/d and I felt horrible for awhile, but I got through it. My heart Dr helped by prescribing 2 meds to help me physically. Things went along OK, until my PM Doc, told me, during my September 2018 visit, “that he was stopping my LA/ER medication”. He informed me he would begin, THAT day, all at once-“cold turkey”. I didn’t freak out, but I reminded him of my past h/o stroke and heart attack and how it’s not safe. He said he’d “let” me have 1 more month at 25% less, “to help me be psychologically ready”(wth???)… so I went with it. Next, I called my heart Dr and GI dr & they wrote a letter to my PM Dr., stating “that this wasn’t safe”. Also they explained how “it’s been working since 2003”. They pretty much wrote, “don’t mess with what is not broken”. They also reminded him of my illnesses, including Gastroparesis & my history of a stroke, heart attack !
The PM Dr became quite angry & said “their medical license isn’t any better than mine! Let them prescribe it to you, if they want you to have it!”… he ended up doing a quick taper and covered his a_ _ , by offering me a LA/ER oral medication that he knows I cannot take because of the Long QT & Gastroparesis.
Ok ….so I stopped the patch, got sick -worsened pain etc/physically. I went from doing a lot of volunteer work to sitting in my recliner 16 hours a day-due to pain.
Therefore, NOW each month that I go to him, I get a stomachache, nausea & diarrhea etc. & my anxiety is high. Last month he decided to add to our little conversation that “he won’t interfere right now”, but “they” want chronic pain patients to stop taking anymore anxiety medications. I’ve been on mine -(a very low dose) barely once a day (I take zero for many days at a time also)… but he says since HE doesn’t prescribe it, HE will not interfere “YET”! But soon he won’t be able to prescribe my short acting pain meds, if I am prescribed my small amount of anti-anxiety meds! Then he let me go home…until this month.
This month he surprised me with the fact that not only IS HE FORCED to prescribe me Narcan, but that I MUST pick it up if I want my pain (SA) medication!!! I told him “I don’t want or need it! I’ve been on less than I had been taking! Also, I have never had an issue since the guy ran a red light and hit me with his car and started all of this!!” He insisted, so I shut my mouth and left. He continued to send both scripts to pharmacy. But first he had to tell me how the “Narcan is like a fire extinguisher! You keep it around in case you need it!” Ok, but it’s different than that because a fire could possibly happen!! But me overdosing is NOT a possibility, when I’m on half of what I’d been on since 2003 -until now!! I NEVER TAKE MORE OR TOO MUCH!
I told my husband that I didn’t want the Narcan in my history, my records and I don’t want to be somehow misrepresented or “flagged” and I instructed him to “Not pick it up”! He went to the pharmacy & talked to the pharmacist. They told him “that was fine. The Dr. can offer it but I don’t need to accept it”, especially since I don’t have SAD or SUD!! Also, it was not covered by my Medicare advantage insurance plan. It would’ve cost $120 “out of pocket” !!!
Tell me what’s wrong with this picture?? Drug addicts are given free needles and free special clean disposal of those needles even in selected Starbucks stores now!! Addicts are given FREE Narcan!! What the hell is going on in this country?? A good, law abiding NON-addict has to pay and be punished for doing nothing–ZERO WRONG..& is told they must pay $120 for something they don’t want or need!! Nor will they ever need (btw, the pain management Dr explained how this Narcan expires yearly & I’d have to get a new one annually!!!????)! This is crazy, ludicrous and it’s “Market rigging!” They want sick & disabled people to pay for items that are not necessary and rig it so that they will not give them the pain medication that they need, unless they do so!!
This is wrong and bad and absolutely not right or lawful!! The pharmacist told us that we don’t HAVE TO get the Narcan filled & it’s not covered by insurance. It costs $120 out of pocket!
You can guess what happened and I’m good for another month! Until next month when I’ll be badgered, intimidated, terrorized! Also, the Dr (but actually the government in my Dr.’ chair) will try to fear monger me into less medication or some other life altering medication switch that I don’t want &/or cannot take!
Why can’t they leave us alone? Let me continue my treatment plan that has worked for 14-15 years?? Why do they have a need to terrorize us, demean us and eventually kill us all off ?? It’s all about money & big government studies without our consent!! It’s all about “Control” and “getting rid of the sick and most weak” persons in society so that we don’t drain the system without being productive!
What about all of those years that I worked and paid money into social security?? I deserve that back and I’m not getting government hand-outs!! Why is this happening?? This is all crazy Eugenics, Nazi B.S. !! Someone please help the chronic pain community NOW!! Before it’s too late!! A news station, a politician or a celebrity with a big voice, PLEASE HELP US NOW BEFORE ITS TOO LATE! I have lost several friends already because of this FAKE …NON-Prescription opioid / Opioid crisis!
Wake up American media, &/or politicians who have a heart; who aren’t money hungry or power hungry!! Wake up and help these citizens. There’s a large group of 100 million chronic pain patients who need you to step in and DO something to stop the suffering!!
The INTERNATIONAL Association for the Study of Pain (IASP), says that suffering is inhumane and unnecessary! International Association for the Study of Pain
“The mission of the International Association for the Study of Pain is “to stimulate and support the study of pain and to translate that knowledge into improved pain relief worldwide.” Its overall vision is “Working together for pain relief throughout the world.” The most preventable form of human pain is that inflicted in the form of torture and inhumane treatment, whether physical or psychological. The participation by IASP members in acts of torture or inhumane treatment is therefore against the fundamental principles of the Association.
“For the purpose of this Declaration, torture is defined as the deliberate, systematic or wanton infliction of physical or mental suffering by one or more persons acting alone or on the orders of a public authority, to force another person to yield information, to make a confession, or for any other reason.” [World Medical Association. Declaration of Tokyo (1975). Adopted by the World Medical Association, Tokyo, Japan, October 1975.]”
Ohh My Goodness!!! Has our society gone completely mad now? These “sickos” may be taking us back in time to a period when people were given a Frontal lobotomy for the relief of intractable pain!! This is absolutely crazy, when a safe pill, called an “opioid” can help our chronic intractable pain patients. Who in their right mind would choose a frontal lobotomy over a safe an effective pill? The opioids that are getting a bad rap from anti-opioid zealots (read more about them, here: Anti-Opioid Zealots ), are not hurting the legitimate chronic pain patients. People who’ve been prescribed opioids for years, (a decade or even more) & have done well; are NOT addicted! Only about 1% of true chronic pain patients actually ever become “addicted” (Writer Josh Bloom, gives you statistics here: The Opioid Epidemic in 6 Charts, Designed to Deceive You ). It’s not prescription opioids that are the problem! It’s the illegal fentanyl from China & Mexico that are hurting, addicting & killing people! Addiction and dependence are two very different situations. You can find out more information about that here: Addiction & Dependence Are Not The Same
Who are the bad actors? Government, Healthcare or Patients? • CERGM
— Read on cergm.carter-brothers.com/2019/03/28/frontal-lobotomy-for-the-relief-of-intractable-pain/
I just wanted give my readers a little “nudge” & remind you all to visit the The HHS Task Force online, which has provided a 90 day public comment period (ending April 1st,2019)
****In the Search Box, put these words so you’ll get to the correct place for commenting: HHS Draft for Best Practices.
I implore you to send in your comments. This is our chance to have our voices heard. Please go to the above link, in order to have your voice heard regarding the Draft Report to HHS. * my comments are copied & pasted for you below.
There are three different ways that you can send in your comments regarding this Draft report:
**When you write, email or post your messages regarding the Draft Report, please refer to this Docket Number:HHS-OS-2018-0027
How to Submit Comments:
1) Visit this Federal Portal at: http://www.regulations.gov
2). Or you may Email to: firstname.lastname@example.org
3) or use USPS and you may Mail written comments to:
U.S. Department of Health and Human ServicesOffice of the Assistant Secretary for Health200 Independence Avenue, S.W., Room 736E,Attn: Alicia Richmond Scott, Task Force Designated Federal OfficerWashington, DC 20201
These are my thoughts. I will be condensing them into being my comments to the HHS Best Practices (again, comment period goes until April 1,2019:
- I agree with the “individualized patient centered care”. But allow the Dr./Patient relationship to the determine treatments. But don’t allow the government, pharmacists/pharmacies, to override the treatment, including type, class & dosage of pain medications. Pain management Drs. went through, in many cases; 14-15 years of extra education. They know more about what’s best for the patients.
- Opioids taken as prescribed, have less harsh & lasting side-effects than many other medications that are prescribed freely for patients today (such as Bupenorphrine, Suboxone)
- 1) Many medications can cause death, if an overdose occurs. 2) Many medications can cause physical dependence, including heart, blood pressure and even insulin.
- Pain Medications shouldn’t be decided on by what illness(es) a patient is living with. Pain is subjective and the CDC, in their 2012 response to Andrew Kolodny, stated that there was no research to prove that there’s any difference between cancer and non-cancer pain. Mr. Kolodny was trying to say that cancer pain was the only worst pain. There are a number of illnesses nicknamed “the suicide disease”,( including: RSD/CRPS, A.S., T.M. & others). People with comorbid highly painful conditions, should not be lumped & labeled as a sum of their illnesses. Everyone metabolizes differently. Some people may do well on a certain medication, while it makes others desperately more ill (due to the horrible side effects).
- Nothing should ever be dictated “across the board” . Never should one rule be applied to 100 million chronic pain Patients. Some people living with illnesses such as Ehlers Danlos syndrome, for example; don’t metabolize medication like most other people do. They may need a much higher dosage than what the recommended ceiling of 90MME allows. By the way, when did recommended become law?
- The CDC Guidelines were supposed to be just recommendations for General practitioners. But not even a year later, pain management Drs started being hassled by the DEA & other government & law enforcement officials. In 2018, they turned into “laws”. In many cases, good Drs. Have been losing their livelihood, their entire life’s work, because the DEA thinks that they had too many pain patients taking higher doses of opioids! It’s normal that Pain clinics would have a much higher number of people taking higher dosages of opioids.
- Many persons who are living with several lifelong chronic painful illnesses, do not wish to have: massage, Reike, acupuncture or anything involving touching. People for example with CRPS, (systemic especially), cannot bear the pain of touching like this.
- Many of those who live with horribly painful Rheumatoid disease, Neuropathies, Ehlers Danlos Syndrome & others, may get worse from doing things like Yoga, Tai Chi and even PT. (I had 9 years of PT & it made me worse & not better,many times)
- Meditation most often doesn’t work well for the patients living with anxiety &/or PTSD, for example. *If it does help a little; it still does not lower high amounts of pain for the rest of someones life. Not enough to give someone their life back after a catasrophic painful event.
- Why should anyone be forced to get an invasive surgery over taking a simple oral pill? Again, any medication is dangerous if taken incorrectly or by a person other than the intended patient. Therefore demonizing only opioids makes no sense.
- Many persons aren’t candidates for the SCS and/or intra-thecal pain pumps. Many living with several painful illnesses have also compromised immune systems (CVID +others).
- It appears that nobody on this HHS task force lives with chronic pain, in high amounts, due to lifelong, high pain chronic illnesses? Because they should know that no amount of meditation, injections or tai chi, would end ongoing continuous life long chronic pain!
- *meditation, music therapy and aqua therapy may help to lessen pain for a short period of time (**if the patient doesn’t have an aversion to being in water or have open sores due to secondary illnesses)
- As you can see, there’s no one fix for everyone. Mostly because we are individuals who must have individualized care. Nobody should be putting one group of persons with physical chronic pain or PTSD, ahead of another group of survivors. You don’t know what horrors anyone has been through. A soldiers PTSD may be horrific. Also horrific may a grown up’s PTSD. Someone who had lived a life of horrors in their own home (which should’ve been a safe place), at the hands of abusive family members.
- Please don’t prescribe dosage limits “across the board” for everyone. That’s not keeping with the physicians code of ethics “to do no harm”!
- Don’t pick & choose what medication or dosage by each illness or condition. Some medications work for one person and don’t help others
- Give the physician back their right(after years and years of education & experiences) to diagnose and treat people with ongoing lifelong pain. Keep the Dr/patient relationships together, without intrusion or interruption in patient care!
- Please keep in mind that chronic pain does not = addiction.! Just because someone needs opioids to help high amounts of pain (*that will most often, never go away), does not make them an addict. It shouldn’t give them the label of “substance use disorder” either!
- Do Not make the Hippa privacy laws a joke or obsolete. Confidentiality matters! In order to have any confidence in your health care team, you must trust them. What I’m saying is that the police departments and other employees of the government or anywhere, should NOT BE GIVEN ACCESS TO THE MAPS*! The MAPS are already invasive enough without giving access to everyone!
There are a few good parts to the draft:
- The suggestion to treat each patient on an individual, patient by patient basis.
- Stop raiding innocent Drs offices.
- Stop taking physicians livelihood/careers away because someone at the top of the ladder at the HHS, CDC or elsewhere; lost a brother, mother or best friend, to opioid abuse &/or addiction, that ended with a death, loss and then turned into bitterness!
- Give more hours of education in pain management to medical students
Lastly, opioids are a safe, effective and an inexpensive way to treat lifelong chronic pain, for many patients in this category. They help & work for so many! Especially legacy patients with multiple high pain comorbidities, depend on opioids to have some semblance of life. I know, because it happened to me and I lost my LA/ER pain medications in Sept 2018. I have a much less full life now.
The PTSD, that chronic pain patients are living with after being legacy patients who had been doing well taking opioids for a decade or two or three, is a nightmare! People are becoming a shell of their former selves. Persons with multiple & painful comorbidities, who were able to possibly do a job, be a mother, father, caregiver or grandmother, while taking opioids (*also btw, never getting high from their opioids!); are doomed to live a half-life in bed or a recliner forever. Many are committing suicide.
I read some nasty comments on an article recently (I’ll look for that article. Sorry, I can’t remember where I saw it, but I will find it and post for you asap). There were comments from a person who lost someone to an opioid overdose/addiction. She said she was “tired” of hearing about pain patients contemplating suicide. Tired of seeing where chronic pain patients have written in whining that “if they don’t get their pain meds back they will kill themselves”. Well, I pity that lady because she’s obviously never gone through anything that involves long term, never ending high amounts of chronic pain. The chronic pain population needs to know that there is hope. Because someone doesn’t contemplate suicide, where there is “Hope”. So someone please tell that woman to “chill out” and to “be kind”. Also, tell her not to cut down, put down, belittle or be insidious about life long, never ending, high amounts of daily chronic pain. Unless she is in my shoes/our shoes, our wheelchairs, walkers, crutchs, braces and motorized scooters, don’t judge!
Unless you’ve lived with high levels of continuous chronic pain that you know will never ever stop; don’t judge the chronic pain patient who chooses suicide over being a burden to their loved ones. Maybe they have no loved ones and cannot bear to be alone forever with such high amounts of under-treated or untreated pain? Don’t judge someone who’s been doing well for over a decade and suddenly they lose their pain relief and they’ve resorted to “living” a half-life in their bed or a recliner.
These drafts really need more work. There are a lot of contradictions. Tylenol/Acetaminophen is very dangerous and can kill it cause liver failure if taken continuously. Which is what a chronic pain patient will need! NSAID’s cause kidney failure and anyone who thinks Tylenol or Aspirin will help pain levels at a 7,8 or above; doesn’t know anything about pain. In fact, they’ve never lived with ongoing chronic pain illnesses that are Incurable.
Lastly, meditation, grounding, yoga & aqua therapy are nice for PT patients rehabilitating. They’re fine for some people as an addition to pain medication therapy. But they’ll never work alone to end or relieve high amounts of pain for a person who will most likely need pain control forever. It’s just impossible for anyone to go several times weekly and pay for PT forever! Not everyone has access to a pool. Then there are those of us who have open sores from secondary illnesses or from systemic autoimmune and other issues. I’m sorry, but “grounding” is just silly and I’m entitled to my opinions; as are each one of us.
The above paragraphs are my thoughts about some of the HHS Draft for Pain Best Practices. I’ve got to condense these thoughts so that I can actually leave a comment. With the government shut-down, I’m not sure exactlly what will be happening to this side of things? If I find out any more, I promise to inform all of you. But lets still get those comments posted before April 1, 2019. If we follow the rules, then hopefully someone will hear us. If we wait to see what happens, it may be too late.
Remember not to be long winded. My comments will be condensed version of my issues with the HHS Draft. I will post it for you once I’ve gotten it all set up on the .gov website). Tell them who you are and how you feel about the HHS Draft for Pain Best Practices. Let them know that there are many contradicions in this draft. There are so many things wrong with telling someone who is living with #’s 7,8 or 9 on the pain scale, to take NSAID’s or Acetamenophin. Theres definitely something ludicrous about taking opioids away from someone who’s been doing great with them for a decade or two or three. Opioids are harmless, with very low or no side effects. When taken properly as prescribed for long term chronic intractable pain. On the other hand, if you research Suboxone and Bupenorphrine. They have horrific side effects and you cannot taper off of them slowly because the medication works against you if you attempt to do this. I have received several written accounts from chronic pain patients who believed in their physicians and blindly took what was offered to help their pain, as a last resort. They thought it would be better than nothing. (*these accounts will be in a future blog post).
MY OWN COMMENTS:
I have been living with high amounts of chronic pain on a daily basis since a catastrophic car accident in 2002. I did all that was asked of me as far as having 8 surgeries, 9 years of PT, 3 years of TBI rehab and 3 years worth of pain clinic Biofeedback and injections to my knees, shoulders, neck and spine. I am not a candidate for a pain pump, due to CVID. I tried many medications and most either made me deathly ill or just had horrible side effects that added to the pain. My story is not unique. Many thousands of chronic pain patients attempt to do all that they can do, prior to taking opioid pain medication. When pain is lifelong, whether you are old or young; the idea of staying in a state of high chronic daily pain for decades upon decades, is daunting.
This draft needs much more work. There are too many contradictions. There especially needs to be more done for the legacy patients who have been doing well on Opioid therapy for chronic pain. Legacy patients, like me, are being put into “no win” situations. We have had our medications forcibly taken after doing relatively well for years. Forced tapering is bad for anyone. It is life altering, dangerous and has taken lives. Why would you mess with something that is not broken? If someone has been doing well, how could you fathom stopping the regimen that gave them some semblance of a life? Then what? Then these people are unkowingly prescribed horrible meds like Buprenorphrine / Suboxone. After much research, it seems like most of this manufactured “opioid hysteria” is for money making. That is shameful to use and even kill innocent people just to allow someone else to get rich.
Why are we making insurance companies pay for all of this acupuncture, massage and yoga etc? Those dont work for long term chronic high pain illnesses where the patient deteriorates as the years go by. The majority of chronic pain patients that I know, say that they don’t want to be poked or even touched, because it hurts too much. This is not a solution. Please try to understand the reality of this situation. Don’t allow people who are living with high emotions, to be in positions of power, in charge of important decisions for the chronically ill. Persons with powerful positions who are greiving & who have lost someone from an overdose shouldn’t be making decisions that affect & involve millions of lives. Most people who have lost a family member or close friend from an overdose, won’t be rational in their decision making. Then they end up punishing an entire community of innocent people because they lost someone (*usually their loved one had overdosed by taking someone else’s prescription or illegal/illicit drugs to numb psychological pain).
Please stop demonizing Opioids and selling the idea that these inanimate objects cause addictions and drug overdose. Addiction is a gene that someone is born with. It shows up in some people and not others. Opioids do not kill people any more than guns kill people. It is when the opioids or the guns who get into the wrong hands. Then the people behind them choose to make terrible decisions and others then die from drug overdose, homicide or suicide. Please remember that opioids are inexpensive, accessible (or they were) and they have few or no side effects. They have been helping many chronic pain patients for years and years. The medications are not “bad”, it is the people who obtain them illegally and then do things to the medications or with them, other than the intended purpose. That is what is dangerous and killing people.
Chronically ill persons living with high pain illnesses cannot take Tylenol or NSAID’s for the rest of their lives without horrible effects and outcomes. Those medications are not made for long term. They cause liver and kindney failure and worse. Also, this same group of ill citizens, are usually unable to do or pay for complimentary therapy treatments for decades at a time. Lastly, please leave the pain care physcians or any physician trained properly in the management of chronic intractable pain, to make the decisions that affect the pain community. These Dr’s have been highly educated for many extra years, in order to learn how to treat chronic pain. Stop politicians, PROP, Addiction specialists, pharmacists, the CDC, FDA and insurance companies from making medical decisions that should be left up to the Dr. and patients themselves. Thank you! Sincerely, Suzanne Stewart