Tuesday, March 21, 2017

Hack your Stamina - I've Lost My Marbles

I'm sure by now you've all read about spoons, doves, turtles, heavy weights and hundreds if not thousands of other Metaphors for Pain.  These articles by others much more articulate than I put my thoughts on paper in a way that I can never do for myself.  I love it when I come across an article or even a MEME that "relates", you know?

Today I'd like to talk to you about putting all of these lovely thoughtful written words that you come across to Work.

I'm not a poet.  I'm not creative.  I'm bad with Words, I have no formal Education to speak of.  I'm not good at relating to other's emotions, especially now after years of being this sick, this kind of sick.

What I am is a damn hard worker.  I'm a natural analyst.  I excel at research.   I suffice.

I've been trying to learn "Pacing".  I'm sure you've read about that also, along with the other 42,000 other ways to handle Pain at home.  I found myself hitting a wall here, I've been working too long and hard and pushing through my pain to stop now.  At least, that's what my brain says.  My body says quite the opposite.  My body screams at me every time I overdo it.  I'm sure you can relate, or could relate at some point in your journey.



 


I'm a big fan of "Hacking".  I tend to spend hours upon hours doing research and then devising systems to help me cope.  This may be the simplest one yet.  Bear with me, it's quite beautiful in it's simplicity.

I carry around 12 Marbles, and two Marble Pouches.  The Marbles represent one activity each.  I'm sure this sounds familiar, like I said I'm not a creative person.  Each time I do something, I take a marble out of the Red Pouch and put it in the Black Pouch.  I monitor how many marbles I have remaining in my Red Pouch.  If I'm running low, I know I need to stop and take it easy the rest of the day.  It takes the thinking out of it for me.  Which is also a requirement as my preferred method of handling Kidney Stone Pain is from Cannabis, not Opiates. (WA State, Cannabis Independent) Which greatly affects my short term memory.

Plus, this has the added benefit of screwing with the nursing home staff a full 50 years early. Eventually there will be some Crazy Old Man wandering around a nursing home Literally looking for his damn Marbles.  Muttering about his Marbles constantly...  The "Kidney Stoner" in me will never stop chuckling at this.

I have 12 marbles to spend a day.  How many do you have?


Jerry

Monday, March 20, 2017

UC Davis research on the difference between the goal of Pain Patients and their Physicians.

Why do we go to the doctor? Why do they prescribe us pain medication? What's our goal when taking them? And what is our doctor's goal?
A study on Doctors and Pain Patients found that they often disagree on goals.

University of California researchers made a research including 87 patients who received opioid prescriptions for chronic musculoskeletal pain and 49 internal or family medicine physicians from two UC Davis Medical Center clinics in Sacramento, California. The study excluded patients receiving pain treatment as part of cancer or palliative care.
Following the visits at the clinic, patients and doctors completed questionnaires about their experiences and their goals for pain management.

In one hand, almost half of the patients put reducing pain intensity on the top of their priorities, more than a quarter of them thought diagnosing the reason for their pain was the most important. On another hand, the majority of physicians ranked improving function as top priority, followed by the others that thought that reducing side effects was the most important.
Most of the physicians described the patient visits as difficult, when surprisingly it was a fairly positive experience for patients.

Henry recommends communication training for primary care physicians to ensure that patients are more aware of their goals. "It is critical for doctors and patients to be on the same page and not working at cross purposes," he said.
More information about UC Davis Health and its Department of Internal Medicine is at health.ucdavis.edu.

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Wednesday, March 15, 2017

Promise in a new approach to treating chronic pain with light therapy (LED).



"Chronic pain is a serious issue afflicting millions of people of all ages," says Mohab Ibrahim, UA assistant professor of Anesthesiology and Pharmacology and lead author of the study. "Pain physicians are trained to manage chronic pain in several ways including medication and interventional procedures in a multimodal approach. Opioids, while having many benefits for managing pain, come with serious side effects. We need safer, effective and affordable approaches, used in conjunction with our current tools, to manage chronic pain. While the results of the green LED are still preliminary, it holds significant promise to manage some types of chronic pain."


Researchers at the university of Arizona may have found a promise diminishing chronic pain by treating it with green light-emitting diodes (LED).
In the study rats suffering from neuropathic pain were exposed to LED showed more tolerance and tactile stimulus compared to those that were not bathed in green LED.
In both cases no side effects resulted from the therapy and the benefical effects lasted for four days.


Todd Vanderah, professor and chair of Pharmacology and co-author of the study stated that novel non-pharmacological methods are desperately needed to help the millions of individuals suffering from chronic pain.
Other researchers involved in the study include Kerry Gilbraith, Amol Patwardhan, Aubin Moutal, Xiaofang Yang, Lindsey Chew, Tally Largent-Mines, T. Philip Malan and Frank Porreca.

Researchers are now conducting a small clinical trial on people with Fibromyalgia, a common source of chronic pain. Participants are provided with a green LED light strip to use in a darkened room for one to two hours nightly for 10 weeks.

The results look promising so far, two of the participants even refused to give back the LED light strip because it relieved their pain with no side effect for now.
 It is a glimmer of hope for those suffering from chronic pain, It would be so great to have your own LED light and use it whenever you feel pain is unbearable, diminishing and alleviating it. To give you a moment of peace and quiet. I don't know about you..but I am hopeful.







Sunday, March 12, 2017

New research shows that shared reading can help with chronic pain.

"Our study indicated that shared reading could potentially be an alternative to CBT in bringing into conscious awareness areas of emotional pain otherwise passively suffered by chronic pain patients.
The encouragement of greater confrontation and tolerance of emotional difficulty that sharing reading provides makes it valuable as a longer-term follow-up or adjunct to CBT's concentration on short-term management of emotion."
Dr. Josie Billington
The study, led by Dr Josie Billington from the University's Centre for Research into Reading, Literature and Society (CRILS) and recently published in the BMJ Journal for Medical Humanities, compared Shared Reading (SR) -- a literature-based intervention developed by national charity The Reader -- to Cognitive Behavioural Therapy (CBT) as an intervention for chronic pain sufferers.
Chronic pain is an experience that changes people, felt on a daily basis it can lead to an emotional breakdown, 
CBT is fo Cognitive Behavioral Therapy, it is a therapy that can help manage problems by positive thinking, it is used for depression, mental and physical illnesses.
Shared reading is used in the cases of mental illnesses or in prison, it consists of a group of people reading books and then they share how the story related to their own issue.
I think that being sick you tend to lock yourself in a bubble and think that no one else could ever understand you, sometimes it is just because you don't want to talk about because you think that nothing would ever make the pain go away or make you feel better. Imagine being in a room with people that know exactly what you feel and being able to share with them your experience with chronic pain and being able to empty your heart and talk about what you fell, even better imagine reading similar stories and debate about it, compare with others, I hope that these research will continue and that failing to find a cure they will find good therapies to help us be positively in pain :)

How to find your sanctuary.

In all the process of being sick, accepting that you have an illness, dealing with chronic pain and having a different life, you kind of have to bury the old you and be a phoenix because you always have to reborn from the ashes, to create a new way of life and how to be happy again.


It is a very long path and you need to be patient, to be self-indulgent, yes I am sick, yes I am different, but no I am not going to quit, I am a fighter, I will not let this illness and pain define me.
You have to love yourself, care about yourself, listen to your body signals, if it is more than I can handle I allow myself to be weak a little bit and then I go back to being strong because we have to.
You need to find your sanctuary, this person or thing that will make you feel better, that will make you feel YOU again, free and peaceful, beautiful and special. You need to try things, yes you are in pain and sick but you have to push harder, to go out even if it is for a little while and don't close the doors to people who want to be there for you, I know it's hard to open up but you won't regret it, it feels so good to feel loved and supported.

It is okay to feel sad, it is okay to want things to be different and want more than you have, but never give up, take a break and start again, it is a battle of every day and you will win it.

Saturday, March 11, 2017

We are all chronically fabulous


Hello pain warriors! 
Since this was my first contribution I want to introduce myself. My name is Tessa, I am a 29 year old single mother to a beautiful little girl. She is my person, my world, my strength. I cannot remember for the life of me, what life was like before she entered this world. I work for a nonprofit helping to serve families in need within my community.  I have been working with families in poverty for more than 6 years. I never imagined I would love working in the nonprofit sector, but it is my purpose in life. In addition to working at a nonprofit, I am also a social work student at the University of Arkansas. 

This is my journey with Rheumatoid Arthritis:

For years, 8 years to be exact, I struggled to figure out what was wrong with me. Why my joints hurt, why I felt like I was 278 years old, why I had random fevers, and why for the life of me I could never get enough sleep. Doctor visit after doctor visit, test after test, I always heard the same exact thing "Your sed rates are high, but your rheumatoid factor is normal. I am not sure what is going on, but nothing you should be concerned about." I always left the doctor's office feeling depressed and frustrated. I have a grandmother who was diagnosed with rheumatoid arthritis at 19! I always knew it was a possibility I could have it, but since I never had an elevated rheumatoid factor the doctors always dismissed my family history. 

Then two years ago, my entire world changed. I had my gallbladder removed because my liver had basically squished it. Four days after my surgery I feel the most horrendous pain I have ever felt in my life. It took me three hours to get dressed, and go to the urgent care clinic. I explain every thing to the doctor and begged him with my life not to disregard me. He did his physical exam and blood work. He came back into my room and said " I think you might have rheumatoid arthritis." I sobbed uncontrollably as he explained that he wanted to refer me to a specialist. 

I had waited almost a year to get an appointment with my rheumy (rheumatologist). When I first met him I just knew he was going to tell me the exact same thing as all the other doctors. He ordered labs and said he will let me know as soon as he has the results. Feeling defeated and broken, I left his office and just cried. I needed answers! Four days after our visit I get a phone call from my rheumy. He tells me that my test results came back and that I did indeed have rheumatoid arthritis. I was in complete shock! You mean I am not CRAZY! He wanted to see me back in his office to start treatments in a week. A million questions ran through my mind as I waited for my next appointment. I started googling everything I could possibly find on RA. I decided after all my hours of research that the best thing to do was to create a list of all my questions. The very first question I needed answers to was why did it take so long to diagnose me when I have had all the same symptoms for years? My rheumy explained to me that I have seronegative rheumatoid arthritis. This means that although my blood work shows normal rheumatoid factor levels, my other blood test are all positive for rheumatoid arthritis. 

Since my diagnoses I have also faced other health challenges. Just this week I have been tested for skin lupus and decided to have a complete hysterectomy. In spite of the bad news this week I have laughed more than I think I have laughed in months. I know the road ahead will have bumps, but if there is one thing that I have learned through my journey, life is too short to waste it worrying about things we do not have control over. You don't have control over your body, but you have complete control over how you handle the situation presented to you. :) 

Gentle hugs and positive vibes warriors! Thank you for reading and I am thrilled to be a part of this wonderful community!!! 



Monday, March 6, 2017

Perfectly imperfect.

Every night, when you find yourself all alone, you can remove your mask, take out all your panoply of pajamas, medication, lotions etc to ease your pain and do your routine to make you feel better. Finally you can be yourself, this imperfect person, very different from the one you want everyone to see.


We all want to be strong and brave in front of everyone else, we want to still be the person we used to be. We don't want people to despise us, to pity us, we just want them to be with us, to listen to us and treat us like before, to still laugh with us even when sometimes the situation gets really serious, to take us day by day.

It is very difficult to be in pain and still be you, to put  your emotions in order, to know what to feel and what to feel, what is really happening in your mind and body, but you have to overcome all these feelings and allow yourself to be happy, to take every single moment of joy and happiness that you can take and be grateful for what you have even if it isn't exactly what you wanted.

We are what we are, perfectly imperfect, we should all accept our illnesses, our bodies, our lives and just be what we want to be..even a better version of what we pictured at first, because when you deal with pain on a daily basis it is very easy to enjoy a pain-free moment or even just a moment of freedom when you are still in pain but compared to some days it is a relief and you feel a little bit better, light-hearted and happy at the end of the day.

We all deserve peace of mind, acceptance, love and happiness.
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