2012 was a great year for me as a health advocate. I was featured nationally in Women’s Day Magazine, My first for Women Magazine, USA Today’s Chronic Pain Supplemental this past September, Dr. Drew’s Life Changers show, and the Newlywed Game Show. I was also given the honor of being the recipient of the Neuropathy Action Foundation’s 2012 “You Are Our Hero” Award, and participated through the Power of Pain Foundation as a volunteer in 73 events throughout the country in the past 12 months. One of my most fun events this year was the POPF’s Nervember campaign, where each day of November I got to send out a task for people to complete to help raise awareness and better personally advocacy for chronic pain patients. Most of all I am grateful for the friendships and connections I have made with thousands of patients throughout the world via social media, videos, phone calls and emails. Knowing I was able to give back to others in meaningful ways has been a great blessing!
Barby Ingle
Going through some acute issues right now. Saw surgeon on Thurs. they have an anesthesiologist that will do the Ketamine Protocol, but he wanted me to do one more test before we do the surgery, as he said “with RSD less trauma is more”, which I like, he seems to be very nice and understand RSD pretty well. He also didn’t trust the hospital doctor from last weekend. So was going to get the test done yesterday morning, and it turns out it is a nuclear test and they company that does it is not OK with putting the nuclear substance through my port, and I am not OK with an IV (I have a port for a reason), so we decided to cancel the test. Going to decide w/ surgeon on Monday what to do next. Then I saw the Urologist yesterday. He did some testing and said that the infection is gone yeah!!! but I don’t have one kidney stone, I have two, both 5mm. They are both attached to different ducts in my kidney and as long as they are connected to the meat (as the doctor put it) and don’t get any bigger we are not going to do anything to them. However if they drop into the tube then he will remove them, or if they grow in the duct any bigger he will also have to remove them. Right now they are not totally blocking the duct from working, only partially blocking so he can leave them for now and wants me to come back in 4 months, unless they drop before then, obviously. Tried to eat last night (I am hungry), had rice, green peppers, white bread and small amount of chicken… boy was that a mistake, I am not sure what did it, but my gallbladder was not liking me! not gonna try that again. I just want this to all be done and be better and be able to eat what I want again. So that’s the current update!
As far as my RSD it is still doing well since my last infusions in late Sept. 2012
Blessings to all, Barby
Surgery Guidelines for RSD patients
October 24, 2012 at 1:07pm
Surgery Guidelines for RSD patient
Dr. Philip Getson Recomendations (There are other top docs in the RSD field that have similar guidelines, I just happen to like Dr. Getson and trust him 100%)
The anesthesia technique will vary with the surgery
These are general guidelines and the patient’s doctor should make their own decisions
Here is what I will be doing:
Pre – operative: Minocycline 1 day before and continue for 2 weeks after (I am on an antibiotic now for the bladder infection)
Intra-operative: MUST use iv Ketamine as part of anesthesia
Post – operative: Continue low dose IV Ketamine in the recovery room for a few hours – and continue Minocycline for the two weeks after
Research has shown that when you smile, your brain assumes you must be happy1.
A good way to start the day, prepare for a doctors visit, or a social event (especially if you tend towards depression) is to make it a habit to practice everyday for a few minutes, eventually, it will become more natural and more of a reflex action to help release stress.
Practice the following simple meditation (might help to close your eyes) for a few minutes each day:
While inhaling, smile
While exhaling, relax deeply
You can do different smiles: a subtle hint of a smile, exaggerated smile, big and soulful, eyes crinkling, mouth open or closed, or just mentally imagine smiling.
You can practice this exercise for longer periods if desired, but if you find yourself not consistently doing the exercise because you can’t spare five minutes, go back to a one-minute meditation. The cumulative value of doing this exercise over a long period of time is more important than how long you spend each morning.
1 Strack, F., Martin, L.L. and Stepper, S. (1988) Inhibiting and facilitating conditions of the human smile: A nonobstrusive test of the facial feedback hypothesis. J. Pers. Soc. Psychol. 54: 768-777
People have been asking a lot lately about my improvements from infusion therapy. Here is a brief overview of what it has and hasn’t done for me.
It has significantly helped with:
Constant burning pain
Abnormal hair growth/loss
Blanching
Concentration/ memory
Fever/ Low grade temperature
Headaches
Hearing disturbances
Hypersensitivity
Insomnia
Migraines
Optical migraines
Skin cold/hot
Sleeping
Stiffness/ Range of Motion
Sweating
Swelling
TMJ/face pain
Vomiting
Walking
Slight Improvement seen in:
Balance
Constipation
Dizziness
Fatigue
Muscle spasms/ Twitching
Nausea
Vertigo
Writing
Showering, Shaving
Daily activities: laundry, Cooking
Typing
Strength
Improvement not seen with:
Still have intermittent pain: bone pain, Electric pain…
Atrophy
Thyroid issues
Vision Disturbances
Weather changes still affect me
When I come out of “remission” all symptoms return to varying degrees.
The difference between anesthesia and tranquilizers
August 6, 2012 at 11:25pm
Anesthesia vs Tranquilizers
Many people confuse Anesthesia and Tranquilizers so I thought I would research the topic and I learned a few things. My information is from an anesthesiologist, veterinary assistant and wikipedia.
Anesthesia
Anesthesia is a state of mindlessness (apathy, loss of sensation, medically induced insensitivity to pain)
Anesthesia is much more complex than just “putting out cold”
There are 3 fundamental components of a general anesthetic
sleep,
relief of pain
muscle relaxation
It is the skill of the Anesthesiologist to match the amount of each component to the particular needs of each patient and each operation
The mechanism of action of the anesthetics is one of those ongoing questions, but the most popular theory is that they cause a degree of swelling of the brain cell wall, which obstructs the normal passage of electrolytes in and out of the cell, thereby preventing nerve impulses from being generated
An example of a commonly used Anesthesia for humans is Ketamine, Tiletamine, and Propofol
Ketamine has also been found to bind to opioid receptors type 2– however, without agonist activity
Ketamine interacts with muscarinic receptors, descending monoaminergic pain pathways and voltage-gated calcium channels
Ketamine induces a state referred to as “dissociative anesthesia”
Ketamine is primarily used for the induction and maintenance of general anesthesia, usually in combination with a sedative.
It has been shown to be effective in treating depression in patients with bipolar disorder who have not responded to anti-depressants
In persons with major depressive disorder, it produces a rapid antidepressant effect, acting within two hours as opposed to the several weeks taken by typical antidepressants to work
It is also a popular anesthetic in veterinary medicine
Tranquilizer/sedatives
Tranquility is a state of serenity (calm, stillness, silence)
Tranquilizers/sedatives are drugs that may be used in achieving either state, by varying the dose
The sedatives can be used for the sleepy bit, but there are several other drugs, including the inhaled anesthetics, which do the same job
The sedatives, though being said to make patients relax, do not do the job of a proper muscle relaxant, nor do they do anything to relieve pain
Typically drugs are often called sedative/hypnotics due to their ability to cause sedation and induce sleep
The primary tranquilizer/sedative in use are benzodiazepines like Valium (Diazepam), Xanax (Alprazolam), Ativan (Lorazepam), Rivotril/Klonopin (Clonazepam), Restoril (Temazepam), Versed/Hypnovel (Midazolam). These drugs are often given for anxiety and/or insomnia
It has been a great summer so far. Pretty relaxing. I got to go on my first vacation in 10 years. It was amazing. Now I am getting geared up for the fall. Sept. is Pain Awareness Month and we have a lot of events going on. As well my newest book The Pain Code; Walking Through the Minefield of the Health system will be released in print on September 1, 2012. I will post a link when it becomes available. Besides monsoons being more frequent this summer, things are going well.
Please don’t forget to vote for POPF if you haven’t already! Power of Pain Foundation has been selected out of 2,400 Nominees as a Top 5 Regional Finalist in Most Effective Awareness Campaign by a Charity for the 4th Annual CLASSY Awards! Help us move on to the next round by casting your vote before July 26: http://www.stayclassy.org/classy-awards/vote The Power of Pain Foundation is listed in the SOUTH region in the Most Effective Awareness Campaign by a Charity category.
Women can be their own best advocate by taking steps to lead your life. Don’t rely on others to make your decisions, do your research, or keep you organized. Start by speaking up and coordinating with the people in your life. Setting the expectation is so important and although best done at the beginning of a challenge, it is possible to be successful doing this later in the process. To become the Chief of Staff of my Medical Team I focused on 5 areas; finding the correct doctor, preparing for the doctor visit, what to do at the doctor visit, following my care plan, and staying on top of my medical billing statements. Finding a doctor that specializes in the condition you are diagnosed with can be a challenge. It is important to keep in mind that you are not looking for just any general physician but rather for a physician who has expertise in the treatment and management of your specific illness or condition. Find out if the doctor knows about your conditions in-depth is very important. For instance sometimes a pain doctor will know more about arthritis and others Neuropathy conditions. Once you find your provider team be sure not to waste their time or yours by preparing for the visit. At the appointment be assertive and listen to the other side. You need to be an expert of your issue through research and asking questions. Make sure you have a shared understanding of your treatment goals. If you want to be pain free, but the condition you have will not allow it, come up with better goals that are realistic and increase them as you get better. Also, many people have a lot of questions or information they want to share with their doctor. Bring them in writing and write them as you think of them, not at the last minute. While at the doctor’s office organize the visit by going through your summary sheet (try to keep it to one page, and typed if possible). It is important that you stay on track and focused at your doctor appointments and it helps to take someone with you. They can take notes while you are speaking with the doctor. I have come home and said, “now what did the doctor say about taking this medication” and if my husband wasn’t there, I would not have known what to do and would have had to call the doctor’s office and take up more of their time. One important thing while with a provider is keeping your emotions under control. If you are depressed but are there for another issue, the doctor will treat your mental state first. Staying focused can help you get what you want to focus on and need answers for accomplished. Finally, be specific. For instance, if you are there for pain show where it hurts: point to the areas; if it is your whole body, does any part hurt more than the rest or does the pain feel different in different spots? In-between appointments you are responsible for following through on the doctor’s orders. Be sure to do your homework so you can accomplish your goals. When you are proactive through research you can make a better decision on the options your doctor gives you and make sure you are choosing the one that is best for you. Keep track of progress and setbacks and report back to the provider on your next visit as a section of your one pager. Be sure to educate the doctor on revisits with the progress made, ability to function in daily living activities, and any new goals or research information you have found in relation to your condition. Finally, the Joint Commission on Accreditation of Healthcare Organizations (JCAHO) says, “8 in 10 medical bills have a mistake on it”. I have paid thousands of dollars in medical bills because I didn’t pay attention. I got some of the money back but not all. Before you pay medical bills, check the explanation of benefits from your insurance company against Doctor’s bill. Sometimes doctors send you a bill before they hear back from your insurance company. Your insurance company will negotiate rates for you so the amount you owe may be significantly less than the doctor’s charges. If you don’t have insurance don’t be afraid to ask for a cash discount, insurance companies get discounts and doctors can write off your discount on their taxes. Remember to file an appeal if you feel the insurance company got it wrong. For example they ask you to do Step Therapy but you have already tried and failed the cheaper medication. Using your records to show that you already went through this can save you time, money and health. Keeping organized records and file appeals when possible. Many people will say no the first time asked, because they don’t want to have a financial burden or take time out in their own life. I have a copy of all of my medical records from the past 10 years. It takes up 6 three-inch binders and is growing. If you can provide records and other researched information and go back to them, it is more likely to get them to say yes to assist with your goal achievement. Staying organized and prepared helps us get through the day with less stress, anxiety and pain.
I was on top of the world in 2002. I had my dream job, husband, and new home; and in 8 seconds my life changed forever. I was rear-ended by a 15-passenger van. This incident lead to a brachia plexus nerve injury (whiplash) that triggered a neuro-autoimmune condition to begin to attack my body. Within 14 months, I had lost my job, house, marriage, figure (gained 40lbs), and was forced to go onto state assistance and food stamps. Ever since that day, I have fought to get my life back and now in remission, I realize that life is what we make of it.
I took one moment at a time over the past ten years. I advocate for all of us challenged with a chronic care condition involving chronic pain as well as their family, caregivers, healthcare professionals and public. Whether physical or mental, pain can and will consume you if you allow it to and only the patient can begin the process of healing! My hope is that sharing my story will inspire others to be filled with HOPE and motivation. If I can do it, anyone can. I now share my knowledge of overcoming the challenges that we face every day with our activities of daily living.
I had to learn the hard way and now pass on my knowledge to give hope and answers to patients, caregivers and healthcare professionals. I hope by speaking out about my journey it stops it from happening to anyone else. I got through my life challenges by facing the fear of what was to come and remembering – you never stop cheering until the game is over! Attitude is everything!