A friend who cares : Barby Ingle
“When we honestly ask ourselves which person in our lives mean the most to us, we often find that it is those who, instead of giving advice, solutions, or cures, have chosen rather to share our pain and touch our wounds with a warm and tender hand. The friend who can be silent with us in a moment of despair or confusion, who can stay with us in an hour of grief and bereavement, who can tolerate not knowing, not curing, not healing and face with us the reality of our powerlessness, that is a friend who cares.”
— Henri J.M. Nouwen
Thank you! ~ Mandy Winner 1/1/2014
Tag:
Barby Ingle
Print Interview of Barby Ingle by Sylvie Ghysels, AFMASA Board Member & Belgian Delagate
by BarbyIngle
written by BarbyIngle
Interview with Mrs. Barby Ingle,
Author &, Executive Director of the Power of Pain Foundation,
CRPS/RSD Patient, RSD/CRPS advocate for CRPS sufferers
- Barby, how did you develop CRPS? How and when were you diagnosed?
I developed RSD September 26, 2002 after a minor auto accident. I was diagnosed with a brachial plexus nerve injury because of the accident, which spread to full body RSD with organ involvement. It was not until May 2005, that I was properly diagnosed with RSD. Between September 2002 and May 2005, I underwent multiple surgeries including a first rib resection. Each surgery caused the RSD to spread and symptoms to be exacerbated. I was diagnosed officially after a pain management doctor examined me, looked through my records and then performed a nerve block in the right ganglion nerve bundle of my neck. The nerve block helped for a few hours and I began radio frequency ablations after that.
- Barby, you are the Executive Director of the Power of Pain Foundation. What are its missions? What are your responsibilities? What kind of works are you doing within the frame of this foundation?
The Power of Pain Foundation (POPF) is a registered not-for-profit organization founded on January 1, 2007. The POPF’s mission is to educate and show support for Chronic Pain Patients, specifically those with Neuropathy Pain conditions including Reflex Sympathetic Dystrophy (RSD), Diabetic Neuropathy and Post Cancer Pain. We fulfill our mission by promoting public and professional awareness of Neuropathy chronic pain conditions, educating those afflicted with the syndrome, their families, friends and healthcare providers on the disabling pain it causes, action-oriented public awareness, education, and pain policy improvement through activities and efforts to eliminate the under treatment of chronic pain and a commitment to emotional and educational support for chronic pain sufferers who have Neuropathy pain conditions such as RSD.
The POPF’s objectives are reached by important education, support and enhancement projects. The Power of Pain Foundation demonstrates its commitment to the chronic pain community by promoting new knowledge in the cause and treatment of chronic pain conditions. The ultimate goal is to increase chronic pain patients’ ability to perform their regular activities in the community and to bolster society’s ability to provide full opportunities and appropriate supports for its pain citizens. Through supporting education for pain patients, family members, caretakers and medical professionals, we make an important contribution to the overall knowledge and treatment of chronic pain.
My responsibilities as Executive Director are running the day-to-day activities for the foundation. This includes carrying out the organizations goals & mission. I also attend board meetings to report on the progress of the organization and answer questions of the board members. I coordinate the executive staff as they put together awareness and educational events for patients, caregivers and healthcare professionals. This is a volunteer position, as are all of the executive staff members. We do this to ensure that funding raised goes as far as possible to helping those who need it most. Each year for the past 5 years, I have been involved with awareness projects, educational projects, motivational speaking, fundraising, supporting legislation, and mentoring.
3. You also are an author. How many books have you written about CRPS and pain? What were your main motivations?
I have published two RSD books and a journal; RSD in Me!, ReMission Possible, and The Pain Code. My motivation for writing these books is so others do not have to go through the challenges of mistreatment and under treatment of pain that I endured. My books are for all of those suffering from chronic pain as well as their family, caregivers, and healthcare professionals. Until you feel the pain and are faced with the symptoms of RSD, it is difficult to understand all of the challenges it brings on. My books help fill in the gaps for non-patients and give tips and tricks for patients to help with their everyday living. My hope is that my speaking engagements and books will inspire an eventual transformation for patients filled with HOPE and motivation.
4. Let me come back on your book “Remission Possible”. You describe your experience with a Ketamine treatment. Could you explain to us the treatment and how it changed your everyday life afterwards? How long have you been in remission?
I underwent the inpatient Ketamine Infusion process for my initial treatment in December 2009. Prior to the treatment, I underwent physical and psychological testing and got off of all of my narcotic medications. I was treated in the ICU unit of a hospital for 7 days. The first and last day the doctor titrated me up/down to max dose. I spent 5 days at max inpatient dose. After being released from the hospital, I began a booster infusion protocol that is done in an outpatient setting. All boosters in the protocol I use are done for at least two consecutive days. The first four infusions were done at 2 weeks, 2 weeks, 4 weeks, and 12 weeks. Since then, I am on an as needed basis. Meaning, if I come out of remission due to a trauma I schedule a 2-day consecutive booster to be done immediately. The longest I have gone without a trauma causing me to exhibit symptoms of RSD is 3 months.
There is a process of healing socially, emotionally and physically after the initial remission is achieved. Life does not just go back to the way it was before your illness as I thought it would. I had to recognize this and adjust to the new life that I now face. It is a completely new phase of life, being somewhere between me before RSD and me at my worst RSD life-period. I have improved in my physical health, social activities; and mental stamina since going into remission. I learned that only the patient can begin the process of healing and that healing starts from within and it can only be yours if you choose to accept it. I am now able to do light housework, take walks, drive my car and attend more awareness events. For me the process was worth the effort.
5. Could you explain us more specifically how Ketamine acts on CRPS? What specific CRPS symptoms does Ketamine put into remission?
RSD is a progressive disease with key components being damage to small nerve fibers and activation of Glia. Increasing data in the recent years link CRPS with disturbances of the immune system. Test that can be used are PET scan, small nerve biopsy, laser thermogram and soon specialized blood testing.
Researchers have demonstrated the importance of the NMDA receptor and glial activation in its induction and maintenance. Ketamine is the most potent clinically available safe NMDA antagonist. It has been used in the treatment of pain, as anaesthesia, and treatment for depression over the past 40 years.
Glia has a receptor for opioids that the Ketamine can also bind. Where opioids activate glia, causing increases in pain, Ketamine can deactivate the glia activation. When this occurs, you see a reduction in sympathetic nervous system symptoms. Some of these symptoms include reduced pain levels, reduced skin discoloration, reduced sweating, reduced swelling, and reduced spasms. In addition, not being in pain can help with the short-term memory issues, proprioception increases, and sleep patterns become more stable. I get relief from these symptoms listed to the point of pain days of zero. Barometric pressure changes still affect me. When storms are moving in and out, my pain goes up to a 3-4 level. Prior to Ketamine, I was at an almost constant 9-10 pain level. Other symptoms I have noticed that are better are blood pressure, migraines/headaches, no more nausea/vomiting, balance, Dystonia, and hearing sensitivities. When I come out of remission, these symptoms return within 15 minutes to 24 hours.
6. In Europe, it is very difficult for a CRPS patient to have access to the low dose Ketamine treatment. Is it the same in the U.S? If yes, what do you think is the reason?
Unfortunately, it is difficult for patients in the US to get Ketamine, although it is getting better as healthcare professionals are educated on it. There are multiple reasons that access to infusion therapy is denied. Infusion therapy is being performed for patients with all kinds of neuropathy conditions and it helps many recipients. It is just hard to find a doctor who will perform infusions for anything more than IV-chemotherapy for cancer patients. What I have run into all year is resistance from doctors. Some are doctors who I know very well, which sadden me. I started asking questions to doctors specifically. Some of these doctors have seen me over the past few years. They cannot believe their eyes when they see me now. Yet they still give reasons and obstacles for not wanting to offer these treatments.
Doctors tell me there is just no money in it. Insurance companies give the doctors who do perform IV-Ketamine a hassle. More so a few years ago, but even today, some still get problems. Doctors who looked into doing these a few years ago decided not to offer the procedure or to do it on a cash basis only. I had to file the paperwork instead of the hospital, but ran into no issues on the portion they paid the hospital and did not file any appeals.
The next issue that comes up is that many doctors have very small offices. Even at pain management and surgical facilities, the patient takes up a spot in the recovery room or infusion room for half a day. That becomes prohibitive for doctors to deal with because it cuts down the number of patients they can treat as well as amount of funding they can make. Doctors do have limited time for treating patients, and they have required continuing education hours that they also have to fit in. Some tend to stick to classes that reflect their area of interest. So they are not getting a wide variety of knowledge that, as patients, we tend to believe occurs. I learned the hard way doctors are not created equal. It may just come down to them knowing of the condition, but it is not their specialty, so they do not invest in it.
Another challenge is when a patient is having the IV-Ketamine infusions, a certified nurse needs to be present the entire time. It is different from when nurses can come in and out of patient rooms; this nurse has to monitor you the entire time. Taking one staff member away for one or a few patients at a time for four hours a day increases a doctor’s overhead expenses. Most doctors could not survive on this type of set up. They need to see more patients; therefore they need more assistant staff members. Not only are you taking vital staff away from other patients, you are using space.
Finally, some doctors have tried to argue that there are no studies showing the effectiveness of IV-Ketamine treatments. There are many studies that have been done all over the world. There were also over 300 articles I found while researching for my book. The healthcare professionals just haven’t received the education in the newest information.
I have to say, over the last three years, I have seen more coverage of Reflex Sympathetic Dystrophy and Ketamine as a treatment option in particular. I truly believe that we are moving in the right direction. As information spreads and medical knowledge is brought to light at medical conferences, we will see a great improvement.
7. You also gave a couple of interviews on TV…and met with Paula Abdul, a famous singer. May we kindly ask you what kind of experiences these things have brought to you?
I was at an event in December 2010 and had a man introduce me to other attendees as a media darling for patient advocacy. I have done TV interviews on the local news, radio shows, quoted in newspaper articles, have presented for five other organizations, worked with state politicians to get better pain care policy, and met hundreds of people with RSD and treating doctors from around the world. I know that I am reaching many people with my pain care messages for all types of conditions, not just Reflex Sympathetic Dystrophy. I talk to everyone who will listen, no matter where I am; you could have probably guessed that easily.
When I met the Jonas Brothers, I gave them awareness bracelets. I said to Kevin, the oldest brother, “I know you will never wear them”. His response was, “You never know. We may wear them. Keep watching!” It turned out that they were in town to do a live remote interview. One of the first things they did was give a shout out to those who have pain. Wow, I was very excited. I know they did that because of me. How awesome.
Meeting my heroin, Ms. Paula Abdul was a great experience. I presented her with my books, 10 awareness bracelets to pass out, and a letter, in case I did not have time to share everything I wanted with her. A week later, she talked about her RSD challenges in a magazine article for the first time in a few years. I hope that my sprit, energy and inspiration lead others in a high profile position to start to speak out regularly on RSD and the challenges we all face on a daily basis. I know that I am making a difference in the RSD community, but the power of celebrity is amazing and I will keep working until everyone knows of RSD just as they do cancer, fibromyalgia or Lyme disease.
8. Is there something you would like to add? Any words for AFMASA, the French CRPS association?
It is important to be the “Chief of Staff of Your Own Medical Team”. Meaning be in control, do your own research, and know what the facts are. The more you know and understand the better off your healthcare will be. Do not let others influence the choices you make without doing your own do diligence and being comfortable with the possible outcomes of your choice. What you chose today can have effects on your tomorrow, so be prepared for what that may be and use your wisdom to guide your medical team. Please check out the powerofpain.org website for more information. Thank you for allowing me to share my story with you.
In name of AFMASA, I would like to thank you for this interview.
Sylvie Ghysels,
AFMASA Board Member & Belgian Delagate
This past 12 months have been pretty action packed for me. Starting with an appearance with Ken on The Doctors TV Show on CBS, and many other local and National TV, Magazine, Newspaper, and online features.
Especially Sept-Dec. when I participated in Pain Awareness Month, NERVEmber, RSD Awareness Month, the PAIN Summit, Comic Pain Relief. Now I have a few months where I can stay home, rest, do online projects and work on my two upcoming books; Real Love and Sex and Aunt Barby Hurts. Looking forward to the next few months of rest and recuperation. Still doing well with my oral orthotic and IV-Infusion Therapy.
Propofol – How Could It Have Killed Michael Jackson?” By Katherine Harmon
by BarbyIngle
written by BarbyIngle
Propofol – How Could It Have Killed Michael Jackson?” By Katherine Harmon, December 14, 2013 at 10:42am
I was reading the article “What Is Propofol–and How Could It Have Killed Michael Jackson?” By Katherine Harmon as I search for info for some friends who are being offered this as an option to self inject at home to treat their RSD symptoms….
According to the 2009 autopsy report, “the cause of death is acute Propofol intoxication,” which caused MJ to stop breathing. To support the weighty pronouncement of homicide, the medical examiner concluded that: “The Propofol was administered in a non-hospital setting without any appropriate medical indication. The standard of care for administering Propofol was not met.”
There are doctors in the US prescribing patients Propofol to self administer at home… to treat pain conditions such as RSD. The prosecutors are following this line of evidence, arguing that Murray should be held responsible for Jackson’s death because he lacked adequate justification, expertise and equipment for giving this powerful drug to his client (who was reportedly aiming to stay rested in preparation for a comeback tour). Although Murray was using a device to keep tabs on Jackson’s vitals, as is recommended while using a general anesthetic, the fingertip pulse and blood-oxygen monitor he used is “specifically labeled against continuous monitoring,” said an executive from Nonin Medical, Inc., which makes the $275 device, CNN reported.
Given Jackson’s apparently substantial admixture of meds and oft-discussed medical conditions, why was Propofol the most likely candidate for his death—and can it be used more safely? To find out, Scientific American spoke with Beverly Philip, a professor of anesthesia at Harvard Medical School. [An edited transcript of the interview follows.] How does it differ from more commonly used sedatives? It’s not a sleeping aid at all. What it is is a general anesthetic.
This puts people into general anesthesia—a sleeping aid doesn’t do that. This is not meant to be used at home. This is meant to be used by anesthesiologists in a clinical setting. How does Propofol work in the body? Are there negative side effects that Propofol can have—even when it is used as directed and in a proper setting?
Yes. Unlike other sedatives, this drug has an extraordinarily narrow safety margin. It changes the body’s state very rapidly so that the patient will go unconscious and stop breathing. It can affect the breathing even before unconsciousness. So even in trained hands, it is very difficult to titrate just where you want. We can do it, but that’s what we’re trained and educated to do—it’s not easy. If I’m inducing anesthesia, it will act inside of 60 seconds. Recreational use leads to a lot of people dying from this medication. It’s very difficult to administer safely even in the most controlled settings.
The FDA [U.S. Food and Drug Administration] is in the process of making this a restricted drug. Drugs in the Valium class and painkillers have a reversing agent that’s commercially available. There’s no reversing agent for Propofol. People taking any anesthetic (Propofol, ketamine… etc) need to be weary about self administering these… they patient needs to be monitored constantly by a trained professional.
POPF is a 501(C)(3) Charity with a Gold Level of Transparency with GuideStar
by BarbyIngle
written by BarbyIngle
POPF is a 501(C)(3) Charity with a Gold Level of Transparency with GuideStar
August 26, 2013 at 12:04pm
Here is a list of 30 charities that I know of being involved in PAIN or RSD/CRPS related issues along with their GuideStar Transparency Rating. GuideStar gathers data from nonprofits including financial statements, board and staff data, etc. GuideStar has the most comprehensive, up-to-date information available on more than 1.8 million nonprofits—and the tools and services to deliver exactly the data you need, in the way you need it. Donors can rely on GuideStar Charity Check to verify nonprofits’ charitable status and identify supporting organizations. Charity Check is 100% compliant with the Pension Protection Act of 2006. The U.S. nonprofit sector is large and amazingly diverse. It can be complex—nonprofit is not necessarily the same as tax-exempt, not all tax-exempt organizations are charities, and tax-exempt organizations have special rules they must follow in order to retain their status. 501(C)(3) charity = Tax exempt or as taxpayers say… tax deductible donations are available through these charities. Gold Level is the highest rating a 501(C)(3) can obtain. Here is what I found As of 8/26/13.
Are a 501(C)(3) Charity and Gold Level of Transparency with GuideStar
Power Of Pain Foundation
Are a 501(C)(3) Charity and Silver Level of Transparency with GuideStar
American Pain Foundation – Out Of Business Since 2011
Barrow Neurological Foundation
Community Partners – (ForGrace Org is using the EIN of Community Partners)
Endometriosis Association, Inc.
Trigeminal Neuralgia Association Inc
Are a 501(C)(3) Charity and Bronze Level of Transparency with GuideStar
Pain Connection – Chronic Pain Outreach Center, Inc.
Rocky Mountain Rsd Crps
Rx Laughter
Are a 501(C)(3) Charity and No rating on Level of Transparency with GuideStar
American Academy Of Head Facial And Neck Pain & Tmj Orthopedics
American Academy Of Pain Medicine
American Chronic Pain Association Inc
American Pain Society
American Rsdhope Group
American Society Of Interventional Pain Physicians Inc
American Society Of Pain Management Nurses
Brooks Family Foundation For Rsd Crps
Chronic Pain Anonymous Service Board
Coalition Against Pediatric Pain
International Association For The Study Of Pain
International Research Foundation For Rsd-Crps Inc
National Pain Foundation
Pain Free Kids
Reflex Sympathetic Dystrophy Syndrome Association (RSDSA)
RDS Aid & Awareness Inc
Society Of Chest Pain Centers Inc
Texas Pain Society
The American Academy Of Pain Management
TMJ And Orofacial Pain Society Of America (Tops America)
Western Pain Society
Women With Pain Coalition
World Institute Of Pain Foundation Inc
US Pain Foundation
5 fun facts about Barby *\O/*
August 17, 2013 at 12:25pm
My favorite thing to eat?
Candy and Carbs. Yes, I am a carboholic!
My favorite thing to do?
Anything media related
What do I do in my spare time?
hum… sleep, rest, sleep, watch ken play assassins creed, and watch movies and documentaries.
My biggest pet Peeve?
Being called Barb or Barbara, neither of which are my name. I think people think Barby is like a young nickname, so they call me Barbara, which is not my name, or they get tired of saying two syllables, and shorten me to barb. I have many friends who are barb and Barbara, nothing wrong with those names, it’s just not my name. 🙂
What do I love most about myself?
Being 5 ft tall, having a brown spot in my blue eyes, having a tiny foot (size 3 in kids or 4/5 in adult), and I am not afraid to fail, which helps me achieve so much in life.
My perspective on Paula
May 19, 2013 at 5:43pm
I know this won’t change some people’s minds, but I am not doing it for them, I am doing it for the people who can get help, motivation, inspiration, and HOPE from this interview. Paula Abdul has a cover story coming out in Pain Pathways SUMMER 2013 edition. It is the first time she speaks unedited about her RSD story. We need to support fellow RSD’ers.
This brings up some issues from her past interviews. One in particular that I wanted to addesss – Paula Abdul was on Dr. OZ talking about RSD: Here is the video of the show http://www.youtube.com/watch?v=ArhuDv-2ZwQ that aired.
It is interesting that 14:32 minutes of the 19:37 interview was on RSD specifically. That is 74% of the interview on RSD info and 11% on Fembody. That is really good for a show that uses advertising and product placement to push stories out. Is this the best interview… NO, but it sure is filled with some really great info when you break it down.
Segment 1 – Intro (3 minutes and 45 seconds on the intro)
.21 secs, There is no known cure (Paula in video package)
.28 secs, You can undo damage (Paula in video package)
1.20, Dr. OZ says RSD is rarely talked about in the public
3:45: Paula takes the stage and talks about RSD (10 mins and 8 seconds)
4:27, I want to do the right thing, I thought I was being brave not telling people I was dealing with a debilitating nerve disease, you see it was not the right thing to do, I should of spoke out. Being really brave would have been being able to discuss it.
5:11: She describes her pain, constant, burning, fire, and needles are some of the words she uses. She describes the dystonia with her fingers locking….
5:48: Dr. OZ states RSD is NOT rare
7:20: The questions that I have, Why am I not getting better, I am having surgery after surgery, but the nerve pain never went away. (Obvious edit!)
9:14: I started getting on the internet and I no longer was alone.
9:27: It doesn’t matter what pillow I have, I learned that ice was my friend. (Obvious edit!) (The editor/producer doesn’t leave in when she did this, or that she does NOT use ice now… she says it “WAS my friend” and it made HER feel better…) Personal note: My physically therapy people had me use it too. I used it for 3 years before I knew it was bad. (This section, as was a lot of the interview, was edited by producers… so it took out of context what she was saying… but she also said, for ME… and only spoke of her personal experience, not everyone’s with RSD)
9:58: I am way smarter than that it is not that simple… it is a 360 process (meaning she took a multi-disciplinary approach to her treatment including changing her diet and taking supplements, and doing things to reduce her inflammation)
10:58: Sugar is my weakness, I am a candy girl, but I try to do everything in moderation
11:59: Stress is a big part of RSD
13:02: For me to feel the best I have ever felt, for real and not masking it, my life is a perpetual rainbow compared to where it was even 6 years ago and a decade before that. I look at life as, I just begun, I am the healthiest I have ever been, and I am here to say that, you can undo damage, by really taking care of your body
14:33 – Segment 3 Age Defying Secrets (2 minutes and 20 seconds on her supplements)
15:47: It keeps me filled up but also keeps inflammation down, which allows me to work and be more focused. (on her fruit smoothie)
16:22: Straight up supplements (named by Dr OZ) / Fembody, Dr. OZ does say, Paula is a paid spokesperson for this product.
18:06: Skin Advise, she says her skin has remarkably changed because of the beauty activator.
18:44: I am going to fight the age thing as best as I can
19:00: How she will do a private lunch with a lucky viewer.
Interesting experiment. Kind of reminds me of lessons learned from reading Atlas Shrugged
by BarbyIngle
written by BarbyIngle
Interesting experiment. Kind of reminds me of lessons learned from reading Atlas Shrugged
April 16, 2013 at 11:38am
Interesting experiment. Kind of reminds me of lessons learned from reading Atlas Shrugged. An economics teacher at a local school made a statement that he had never failed a single student before, but had recently failed an entire class. That class had insisted that Gillard/Brown socialism worked and that no one would be poor and no one would be rich, a great equalizer. The teacher then said, “OK, we will have an experiment in this class on the Gillard/Brown plan”. All grades will be averaged and everyone will receive the same grade so no one will fail and no one will receive an A…. (substituting grades for dollars – something closer to home and more readily understood by all).After the first test, the grades were averaged and everyone got a B. The students who studied hard were upset and the students who studied little were happy. As the second test rolled around, the students who studied little had studied even less and the ones who studied hard decided they wanted a free ride too so they studied little. The second test average was a D! No one was happy. When the 3rd test rolled around, the average was an F. As the tests proceeded, the scores never increased as bickering, blame and name-calling all resulted in hard feelings and no one would study for the benefit of anyone else. To their great surprise, ALL FAILED and the teacher told them that socialism would also ultimately fail because when the reward is great, the effort to succeed is great, but when government takes all the reward away and gives to those who do nothing, no-one will try or want to succeed. It could NOT be any simpler than that. 5 sentences that all applicable to this experiment:1. You cannot legislate the poor into prosperity by legislating the wealthy out of prosperity.2. What one person receives without working for, another person must work for without receiving.3. The government cannot give to anybody anything that the government does not first take from somebody else.4. You cannot multiply wealth by dividing it!5. When half of the people get the idea that they do not have to work because the other half is going to take care of them, and when the other half gets the idea that it does no good to work because somebody else is going to get what they work for, that is the beginning of the end of any nation.
The difference between a disease and syndrome
April 13, 2013 at 12:07pm
I have seen people posting on FB lately about how RSDS is a disease. It gets confusing because there is so much literature (outdated and current) where it is classified or listed as a syndrome, still. Until it is reclassified as a disease AND literature catches up… it is still classified as a syndrome. So people saying it is not a disease, can rightly argue that it is not a disease based on the fact that it is still classified as a syndrome by the majority of powers that be. A syndrome is a collection of symptoms NOT a disease. A syndrome is a set of symptoms that all appear together. Technically, syndrome is used to describe a collection of symptoms or medical characteristics, usually that is on-going. A physical cause for the symptoms can not always be identified, meaning that many syndromes are still medical mysteries. A disease is an illness where you have a line on the cause of it: genetic, toxicological, bacterial, viral, etc. Example: Although testing has been done and we now know that there are auto-antigens involved and it is a disease, the medical world has not caught up and the literature and books our providers study from have not caught up. We are in a transition period at this point. Many RSD’ers don’t want another name change but currently it is RSDS (Reflex Sympathetic Dystrophy SYNDROME) so when others say… “but it is not a disease” it is harder to fight back because a majority of our providers and 95% of the literature still says its a syndrome. This is such new information (April 2011), it will take a while to get out there and change. And I have heard many patients themselves fight over if there should be a name change… I for one say Yes there should be one so it can be classified as a disease, insurance will pay more toward our treatment options, and the public awareness and understanding will increase. Another example: AIDS is still called a “syndrome” even though we now have a good line on the cause, the HIV virus. It acquired the name “syndrome” before the cause was known, and it has stuck. Others would say that the HIV infection is the disease, and that AIDS is the syndrome (set of symptoms) caused by it, because you can have the HIV infection without having AIDS.
Be your own best advocate now to be a stronger healthier person in the future!
by BarbyIngle
written by BarbyIngle
When you have a flare or emergency situation, you have to be willing to stand up for yourself.
Case in point 1. I went to a local hospital because I was having severe pain from two kidney stones trying to pass at the same time. I got to the hospital and they brought me back to a er room really quickly. The doctor came in and ordered a urine test and an iv of fluids and pain meds. I told him that I was unable to have the IV in my arm, that I have a porta-cath for a reason and that he was not going to stick me anywhere but with an access line to my port. He said no, the hospital is too dirty and I said OK and started to slide down off of the bed to leave. He asked me, “what are you doing”? My response was if your hospital is too dirty to stick my port then it is too dirty to put an iv line in my arm and I am going to go to a different hospital. He tried to tell me a stick in my arm is the same as a stick in my port. It is not! There are less small nerve fibers in my chest and chances of hurting me or bringing me out of remission are less. The chances of me getting an infection are about the same either way, but yes, if I was to get an infection in the port vs my arm it is more dangerous. But the chances are about the same either way. When he saw I was willing to leave, he decided to help me. He also had an issue with what meds to give me. As I do IV-Infusion Therapy with a Ketamine cocktail I don’t take opioids. They bind to the same receptor and would stop the K from working. Therefore, the doctor had to be creative. and it made him have to stop and pause for a minute. He ended up giving me Toradol (a NSAID) and Versed. It worked.
Then this past October, Case in point 2 happened. I had severe gallbladder pain. Went to the same hospital. The doctor ordered an IV line and morphine… I again went through this “our hospital is dirty” bit with him… (a different doctor) and the nurse. He got so mad his face turned red, he said he would be right back and asked the nurse to come with him. As they were leaving, I said, I am just gonna go to a different hospital then. I guess they didnt believe me. So, when they came back I was dressed in my clothes and ready to leave waiting for my ride. The doctor got all freaked out and said, “I didn’t refuse to treat you”. I told him I know, that I refuse what he is offering. He asked if he does what I want if I would stay. I said yes. I stayed long enough to get my port accessed, get an ultrasound and get some Toradol in me. When it came to needing surgery to have my gallbladder out, I decided to leave and wait until I had a team of doctors who were trained to help me with my RSD issues in mind and I am glad I did.
Once a doctor sees you stand up for yourself they are more likely to stand with you. If you dont know better, then rely on their expertise, but when you do, as you live a specific condition… do what is right for you. I knew the hospital was not to dirty to access me, that they were just being lazy and didn’t realize how much of an educated patient was sitting before them. I didn’t let them push me into backing down and I am better off for it in the long run. Yes, if I had to leave it would of sucked… but it would of been totally worth it to get the care I knew I needed and not just accept whatever limited knowledge care they were wanting to offer.
This past month I went with a family member to the same hospital. He got the same nurse as me. When the nurse saw me, I believe he was more attentive and helpful with my family member because he knew I would not take anything less and that we would not be afraid to call him on anything we knew better on. It is ok to say NO to a treatment option provided if you are not on board with it to give yourself time to get better care elsewhere, or ask more questions, etc. Please take the time to be your own best advocate now so that you will be here in the future a stronger healthier person.