Discovery Channel: Pain Matters.
An important look into chronic pain by the Discovery Channel. I hope you find this as educational and as enlightening as I did. ~Twinkle V.
Discovery Channel: Pain Matters.
An important look into chronic pain by the Discovery Channel. I hope you find this as educational and as enlightening as I did. ~Twinkle V.
I hope you find Health Rising as informative as I have.
~Twinkle V.
My day time stop breathing episodes have been worsening. It’s still and silent! Where ever I am in the breath at the time is where it all stops. If I had just inhaled I have a few seconds as if I’m under water, I’m not panicking yet. If I had just exhaled there’s little time left. I don’t gasp for air, my body doesn’t startle or flex, everything ceases. At some point in my mind I am aware that I’m not breathing this is when the panic sets in, I tell myself breathe, but I’m not breathing yet, breathe! I can’t even hear my heart beating.
And then I come back! My chest is thumping loudly, my head is pounding, my body is shaking, but I’m back.
I thought these were panic attacks in the past until I realized if they were I should probably be attempting to get air, take it into my lungs. My body and mind doesn’t react this way, though. I have a Pulmonary Specialist that I see for Central Sleep Apnea and Narcolepsy. I do know that I stop breathing numerous times a night for up to 2 minutes. I use an Auto Servo Ventilator for that.
When I was a child I nearly drowned trying to save my sister who was drowning. Her instinct was to save herself so I went under longer. I know what it feels like to not have that air and having it occur more and more often is frightening.
I’ve been lucky through out my life to not experience many headaches. Just average really with the flu, cold or just a random one. The headaches I’ve been having have been terrible. My chest, my jaw, face, arms. All of me, I suppose. Beyond what I consider my normal CRPS. My blood pressure has been on the rise. I’ve been on Lisinopril for it for over 2 years, but it’s still high in the 150’s and 160/’s.
One minute you’re doing something, even resting and the next your gone! The clock is still ticking, but time has stopped for you. You can’t make it move.
No one else can make it move either…
That’s fear!
…But not with a song. Instead it’s Empathy! The last few weeks I’ve pulled away from most activities online especially Facebook. I’ve always liked my little corner of the world, I like being the little duck in the big pond, away from the hustle and bustle of it all. I’ve always enjoyed raising awareness and helping others the best that I can a midst my own pain and hardships. I have a hard time feeling what other’s feel and it really doesn’t matter where or who it comes from. The emotion is still there. The worse of it is when people argue, or lash out at one another for what ever the reason might be at the time. Anyone, Or all the big and little one ups. I am not speaking of any specific person or group. It still plays heavy on me. I want to be friends with everyone. This does not mean I want to talk in private messages or share secrets. I do not. I want to be a part of a support network and get along with everyone. You won’t find me a part of tight circles or tight groups, I’m not into that. I prefer open sharing, caring, support and providing helpful information that can assist someone or everyone. Private messages are on point. Rarely do I share personal information in private or get friendly with someone. Not because I don’t care but because I do. Everyone should be happy for what each other is doing positively. If you knew me at all you would know that the community and life I come from has a specific standard of respect and decency, a moral compass, a morality that if people spoke to each other the way they do on Facebook they would be told to leave immediately if in person and if online booted right out the cyber doorway. Yes, really! And I am not speaking of religion in any way even though my spirituality runs deep. Some people think I know things or gossip about other people I know nothing of, I really don’t, nor do I care to know. Why would I want to cry over anyone’s drama? Empathy! I can say this much in all the time I’ve been on Facebook which has been a few years I haven’t exchanged more than a few dozen separate IM’s. Nope! There’s not many out there that can say that I have. I’ve spoken to, actually spoken to about a dozen people to the point of a conversation and a few more single answers to a question posed. I don’t even know why I’m defending this I suppose assumptions can hurt a bit too. I am truly not use to such chaos. Not being use to it does not make me better than anyone. I am not! But it does make me different from many. I really do look forward to meeting more people offline, being apart of local events, activities, and advocating for patients. I have been meditating on much lately. There is so much to life and attempting to live it. So much just breaks my heart. I’ve always had the ability to empathize above sympathy, most can only sympathize. Having too much empathy hurts. There’s no way to shut it off and it really does kill me softly. I will be focusing on the most important which may not be important at all to someone else. I know my path has been written I just have to decide which way down it to go.
My Journey With Chronic Pain
By Sara Gilbert Nadler-Goldstein
When one lives their life on a daily basis, no one would ever imagine in the course of a second that it would change forever. I never thought that I would be victim of those very words. On May 24, 2003 I was in a car accident on a parkway and rear ended by two separate cars with two separate impacts. That day changed my life forever. I had been a medical social worker for well over fifteen years spanning the scope of practice from the acute care hospital setting to acute rehabilitation, and then a skilled nursing facility. I practiced in the role of case manager discharge planner. I knew how to navigate the medical system for others.However,you never think that you are going to be the patient. What followed was a year filled with many doctors visits involving many medical specialties including neurology, orthopedics, as well as pain management. I did receive two epidural injections and that did not provide the necessary relief that I needed.
In March of 2004 I saw my neurologist and after an M.R.I. was completed and films were reviewed he stated to me that my back was seriously injured and that I should go to New York Presbyterian Hospital-Columbia University Medical Center for a neurosurgical evaluation. At that point in time what followed was that I was given the name of world renowned neurosurgeon Dr. Paul C. Mccormick Director of The Spine Center at Columbia Presbyterian (Neurological Institute). Little did I know that this was the beginning of my good fortune. On March 30, 2004 my mother accompanied me to the Neurological Institute (Spine Center) where I had undergone this consultation. The Surgeon had told me that I had a herniated disc and that it was affecting various nerves in my spine. He reviewed my medical records, and films.
In addition he even showed us a model of the spine and explained the intended surgical procedure he was to perform. I than arranged to have my spinal surgery at Columbia Presbyterian on April 12,2004. After the surgery I was monitored by my neurosurgeon to evaluate my healing from the surgery,as well as my emotional well being. It was recommended by Dr. Mccormick that I see a pain management physician several months after surgery. He was suggesting this level of care for me as well as educating me on the role of a pain management physician. Dr. Mccormick was most detailed in explaining to me the definition of chronic pain. At that point I was not ready to accept that and I really thought that I could heal myself by means of medication, Physical Therapy, and my neurosurgeon stated that he would give me time to come to terms with the information of my diagnosis of chronic pain. During that time period I tried I tried medications as well as physical therapy. However,there was no improvement in terms of my pain. I was most desperate at this point to accept that I needed help. In May of 2005 I contacted my neurosurgeons office and was provided with the name of a highly regarded pain management physician that he wanted me to see at Columbia Presbyterian.Dr. Michael L. Weinberger Director,pain management center, Chief Division of pain and palliative medicine. Dr. Mccormick was going to communicate the necessary medical reports prior to my appointment. At that time little did I know this was the beginning of my good fortune. In June of 2005,when I presented myself to Dr. Weinberger at the pain center. I told him that I was in desperate need of help and that he was my last hope. I communicated to him that I wanted to live a full and normal life with no pain medications. After a through examination was completed and medical records were reviewed as well as films. Dr. Weinberger immediately presented me with a plan of care. He suggested that I consider a spinal cord stimulator as a modality for dealing with my chronic pain. That day he sent me home with a tape about spinal cord stimulation as well as reading material to educate me on this possible treatment option. However, he didn’t initially put me on a regime of medications to determine if it would help me. On my follow up visit several weeks later, I reported to him that these medications were sedating as well as leaving me with no desire to eat,and so dizzy that I could not drive my car and that was not an option for me. At that point the decision was made to go ahead and start the process for a spinal cord stimulator which is an implanted battery pack with leads and electrodes that target the areas of pain with electrical pulses and a vibrating,tingling sensation that reverses the brains signal from perceiving pain to a pleasurable tingling sensation. The process was completed over the period of several months staring with the psychological evaluation to proceeding with the trial. My trial was in October of 2005 with Dr. Weinberger he did an excellent job in mapping out my areas of pain prior to the trial. After the surgery for the trial. I remember being in the recovery area after surgery,and I was crying Dr. Weinberger expressed much concern and I said to him that I am crying for happiness and that for the first time in a year I had no pain. At that time I was instructed to test the device at home for a week (the leads were not permanently implanted,and I had a hand-held device similar to that of a remote control) I was instructed to keep a journal for a week to monitor my pain patterns. A week later I returned to see Dr. Weinberger and his team of fellows and residents at that time,and I reported to them that I had greater than seventy-five percent pain relief and if you can duplicate this for the permanent implantation than I would like to proceed with this method of treatment. I was most determined as Dr. Weinberger knew to live a full an independent life,and to be able to drive to Long Island where my mother resides. In December 2005 I had my permanent implantation of my spinal cord stimulator with Dr. Weinberger.I am most grateful to acknowledge that my goals were achieved not to be on any pain medications,and to engage in all activities for over seven years. This past December the day before the initial implantation, I went into Columbia Presbyterian to have surgery with Dr. Weinberger to replace my spinal cord stimulator battery as it had reached its end of life. I am fortunate enough to say that I have my new spinal cord stimulator battery, along with doing my daily spinal exercises to maintain the health and strength of my back,and attending the gym several times a week pain free. Dr. Weinberger has given me the most important gift and that is to live a full an independent life. It is also extremely important that the patient have an open and honest relationship with their pain management physician as well as the physician working with other physicians on the patients behalf (see Neurology Now Publication on line February 2013 Speak Up blog Collaboration of care at its finest). I was most privileged to have that level of care and continue to have that level of care nine years later. Dr. Weinberger is caring,compassionate,and understanding of the complexity of my medical conditions. He is an excellent listener and understands what my goals are and continues to understand my future goals. His clinical excellence has made these goals a reality for me. In addition Dr. Weinberger understands me as a whole person. That is significant in your treatment because medical health Chronic Pain affects your mental health as well as your outlook for the future,and how you will live your life. This may was the ten-year anniversary since the accident and in June I turned fifty. I could not have reached these major milestones in my life without the caring,compassion,and support that Dr.Mccormick, Dr.Weinberger, Dr.Blanco have demonstrated over the years,and continue to do so. Every day when I use my spinal cord stimulator I reflect to how grateful I am for the special gift that Dr. Weinberger has given to me. This past June I have been under Dr. Weinbergers care for eight years and when ever I thank him which is either at an office visit or a note, or telephone conversation his response is you did all the work I always say to him that I could not have done the work without a good foundation being built, and most certainly he did. The last ten years have not been easy for me there were surgeries, and they are well behind me, and learning and accepting to live a new normal. As a patient you must stay resilient, positive, and strong, and want to be well.
©2013 Sara Gilbert Nadler-Goldstein. All rights reserved!
We should not stop living because it hurts! I’ve heard so many times if so and so has Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy or Chronic Pain in general if they go out for the evening, wear a certain type of clothing, shoes, accessories, move their bodies they can’t possibly hurt that bad. Wrong! It means they are not letting the pain and disability rule their lives. They want to live, laugh, enjoy a moment, make new memories, perhaps experience some of the old.
Too often we become trapped in the cycle of isolating ourselves. Maybe even feeling sorry for ourselves. It’s okay to feel that way from time to time it’s not okay to let the illness take over our lives and that which we love. Family, children, goals, dreams and wishes for ourselves.
If you see someone doing something you wouldn’t do or your body isn’t capable of doing please don’t judge them. Maybe all it means is that they are pushing past the pain for a few minutes, a few hours, or a few days. Granted there are people in the world that like to be sick, they crave attention and pity, but not all Chronic Pain Survivors have this mentality. It is not fair to group them into one category. One size does not fit all and it never will.
Some of us use medication to try to survive, other’s have gone off of all medication and use alternative strategies for coping and managing pain, other’s use a combination of both as I do. Just because someone can survive without medication doesn’t mean they feel better than you do it only means they have learned to manage their pain a different way.
If you love to dance as I did, dance! I do! I may last 20 seconds, I might make it through a half of a song, I already know my body is going to pay for it, so why should I hold back because I might end up down for a week after? I shouldn’t and you shouldn’t either! If you love to garden, do it! Pace your activities so you can enjoy your time. If after a half hour you can’t do anymore, don’t. There is a fine line between doing too little and doing too much! Learn you and what you are able to achieve. It doesn’t matter that the next person only lasted 5 minutes or another person lasted an hour. You are you!
Make daily goals. Lists can be helpful. I often have 5 things on my list, my goal is to be able to mark off 3 of them. If I can mark off all 5 it’s just a plus for me and if I only make it to 2 I’ve learned to let myself know it’s okay. Don’t put yourself down for not completing a task just move the one you missed to the top of the list and start again.
I tell myself “I will” instead of “I’ll try” it’s just something I’ve found quite useful after completing my Functional Restoration Program back in 2009. The word “Try” sets me up for possible failure from the moment I say it to myself. “I will” motivates me! There is no pass or fail here. We can or we can’t. We will or we won’t. We are not only individuals but individuals in our own pain, depression and mindset also.
Many of us deal with depression and/or anxiety secondary to our chronic pain. Close your eyes, relax and go to your happy place. Using imagery can be helpful. Don’t forget to laugh and laugh with others. Laughter produces endorphin’s and endorphin’s decrease physical pain.
Physical pain and depression can be a vicious cycle in itself. Depression causes pain to increase and the pain causes the depression to worsen. Living, smiling, loving, practicing appreciation and gratitude goes a long way in helping us overcome and survive the diagnosis’ we’ve been handed.
While there are times I suffer, I know we all do, I do not consider myself a sufferer, but instead a survivor. I am surviving this! I am alive! It’s been said that pain is that one reminder that we truly exist and for me I believe it. I am reminded every moment of the day that I am living, I am alive.
Be good to yourselves!
Don’t stop living because it hurts, survive the pain and go on.
~Twinkle VanFleet
Please join the Power of Pain Foundation team and choose the “I Wish to BE…ORANGE” category. Orange being the awareness color for chronic neuropathy pain.
Our Team Member’s at the time of this posting are:
Our team goal is to raise $1,000. We would love to exceed that! We have raised $300 and there are 55 days left.
Please consider making a donation on my behalf on my page at:
http://www.kintera.org/i.asp?id=1074023-391201482
Or visit Power of Pain Foundation’s Page at:
and choose who you would like to donate and support.
Please know now that I may not be walking for certain as much as I would love to try. I am however raising funds for my team and the Walk For Wishes. I am still apart of the team. I’m not even 8 weeks Post Op yet and much has to do with follow up appointments and my ability to actually be able to. I still want to support and raise if I can. 🙂
Thank you for supporting Make-A-Wish Arizona. Your contribution is greatly appreciated.
Thank you also for your consideration!
Always be as well as you can be,
~Twinkle V.
Broadcasting live from PAINWeek 2013 Host Trudy Thomas of the Featured Living with HOPE Radio Show will be on the air with Co Host Barby Ingle of the Power of Pain Foundation and together they will be interviewing 4 doctors a day with varying backgrounds in pain and treatments that they each have to offer. Each doctor will get 15 mins of air time.
Trudy and Barby will be doing a 1 hour broadcast live from PAINWeek on Sept. 5th and 6th.
Be sure to stop by the chat room or phone in to listen and find out which doctors will be featured.
http://www.blogtalkradio.com/thebodymindandspiritnetwork
Call in to speak with the host and guest speakers (347) 884-9691
Are you living with a chronic illness? Chronic Pain?
Depression? You are not alone. Join us to meet some amazing guests who have walked the same path and come out on the other side.
This show delivers hope, practical advice, ways to find your own path and would like to hear from you about your journey.
I hope you found this information helpful and the video educational.
Well wishes,
~Twinkle V.
Elliot Krane talks about his 20 years experience of working with individuals who suffer complex pain. He describes a common scenario that I see in my clinic, whereby the pain has persisted beyond the expected timeline, sometimes by many years, and is accompanied by a range of other signs and symptoms that are all manifestations of the sensitivity that has evolved and become entrenched. This includes a variety of protective behaviours and beliefs about pain and what it means, the latter usually informing the former. The belief system is molded by experiences throughout life and messages given by those responsible for their healthcare. These messages and metaphors can often evoke potent imagery and fear that leads to avoidance and strategies that appear to be useful but are actually preventing the move forwards.
Moving forwards is a challenge. But, we are designed to change, grow and develop. Hence by creating the…
View original post 62 more words
Excellent information from Royal Claims Advocates! I hope you find all 5 Recent Medical Study Developments helpful.
~Twinkle V.
There have been several studies released in the past few months that offer promises for better understanding and treatment of several different chronic conditions. Today’s post is going to review some of these advances and how they may affect those with these chronic conditions and how they may impact disability claims.
In this double-blind Danish study, patents were treated with either a placebo or antibiotic regiment 3 times a day for 100 days and then re-evaluated. The placebo group showed no noticeable improvement while patients who received the antibiotics were better able to function after one year with less lower back pain, less leg pain, and fewer days off work due to the condition…View original post 693 more words
Biology of addiction, current research on addictions and modalities of recovery
Improving global pain relief by achieving balanced access to opioids worldwide
Just a wretch saved by grace trying to do whatever I can to grow up.
Raising awareness for mental health disorders through a shared passion of video games, poetry and more.
motherhood - growth - living
Create a path of Light with your Life
Life Scripts of an INFJ
Finding Your Words
A safe place to talk openly about mental health & illness
Daydreaming and then, maybe, writing a poem about it. And that's my life.
Eu consegui. Você também pode!
Spreading The Truth About Kratom Mitragyna Speciosa
How our healthcare system is killing and harming us
A little something for you.
Nothing is impossible (at least that does not violate the laws of physics). When you can..violate the laws of physics!
Kavita Ramlal, Proudly South African