Blessings

I’ve had a lingering cold going on for a few weeks. Most days not so bad. And then a couple of days ago, wham! Yesterday was so bad. Every ache in my body reminded me of this time last year and I really had to put those thoughts away. I couldn’t let coming off Cymbalta instigate depressive moments and I still wasn’t going to turn back to it just to feel better. I asked my husband if he could stop and get me some Chamomile, Peppermint, lemon and honey on the way back from our daughters. Drank that all day. Coughing, or sudden movement causes a reaction in my right upper side. I kept telling myself it’s just pain, you already know that pain, but I didn’t want to know it, not again, and I started to not be able to handle it. So I asked if they could go get me some therma heat patches. Got that on and went to bed. Each time I moved my back, FML, my arm wouldn’t settle down, moving my neck tore through my shoulder, my fingers were pulsating and going numb before repeating the same sensations over and over. Now what? Took the pillows out from under my head and tried to position my spine enough to relieve all that pressure. Got my arm above my head, left it there, and finally fell asleep.

But then the heat patch activated and I woke up drenched hours later Ha! Slept until after noon time today and haven’t done that but a few times the last 6 months.

Today is still rough, swollen and omg all over, but am managing.

There isn’t anything disheartening in this. Since I’ve been able to maintain my legs enough by stretching and strengthening and other than being sore they’re doing great. I got through a horrible night that last year, too many of them, I couldn’t make it through.

These my friends are blessings.

blessing-clipart-god-s-blessings-clipart-1

2.5

Not using home access for the internet for a couple of months now has been interesting since everything is social media and email, anymore. Web based. I have quite a few articles/essays/pieces to share, but I’ll wait to post them for now. I’ll probably only ever get 3 of a dozen or so up anyway. They were written offline as ability permitted. I generally don’t open the laptop at home.

I’ve been doing Bowen Therapy, each Monday, for about 4 weeks now. Also known as the Bowen Technique. I’ve done this before, but not to this extent. I’ve also been having  LLLT at the same time. For more information on Low Level Light Therapy, you can also refer to NCBI or using the search terms. Having done a clinical trial for LLLT in 2011, I’ve been privileged to be able to have this treatment on several occasions since.

Since I’ve been off those 3 medications in their entirety, I’ve lost nearly 35 pounds in 10 weeks. That time  line also coincides with that thing I did, and a second attempt which I’ll keep right there at this time. Last week, after, I received my certification to help down the anxiety highs. Holistically legal. An option I didn’t want to choose for myself, but one I had to make in order to prevent the 3rd time which could be the charm.

I can feel some change in soft tissue damage and related areas in my upper extremities. I can feel a decrease in some symptoms at my hips down to my feet. (Also the covered areas by my SCS, Spinal Cord Stimulator). Headaches, less intense. No matter what level of decrease I get non weight bearing, the moment I step is the rise. I incorporate dance with Yoga though it’s only upper body and sitting. I only do 4 Yoga poses. I’ve done this for years, off and on, but using it as a tool again, 3 times a day.

Really it’s all about finding my center, again. Solar Plexus, Celiac is in bad shape. I knew that before a few tests last week before therapy. Oh it’s a little about Chakras, aligning grounding etc and a bit about the physical reality of the bodily damage itself. The life force. The breath. Chi, Zen and the ‘I’ll heal me, mentality” because  I know no one else can. That includes the medical profession. Besides they are just a tool, too. And one tool that like us, sometimes needs to be replaced.

I’m hyper sensitive. Not be be confused with hyper sensitivity as a medical term. Few would ever know it, yet I don’t just feel, I feel you and me. I don’t just carry emotion, but I carry your emotion. I don’t just feel pain, but I feel yours, as well. I have to shake that off, somehow and I don’t think it’s possible even in possibility without pretending, or lying to myself that I’m not feeling it. Takes us right back to mental health doesn’t it? Fake it to make it until we break it, or rather, ourselves. Every physical and emotional pain learns a coping strategy. Even a crying baby will learn to cope. .. eventually. It’s all in the mind. Our brains can’t feel pain. The only area that does feel are receptors encompassing outside the brain.

At first I thought I don’t want to lose my mind, I haven’t, I’m not crazy, but know what? Yes I do! I want to lose it. All of it. Let it all just roll out from the bottom of my feet and go away.

Things are still ongoing for now. Appointment and blood draws tomorrow. LLLT and Bowen on Monday. I tell you though when life’s harder experiences are constant, you really come out having learned.

Is Ketamine the Next Great Depression Drug? | Al Jazeera America

February 12, 2015 12:00PM ET

In April, a University of Oxford study in the Journal of Psychopharmacology found that approximately a third of patients with treatment-resistant depression saw immediate improvements in their moods. And since 2012, studies from Yale University, Houston’s Baylor College of Medicine and New York’s Mount Sinai School of Medicine found that ketamine is overwhelmingly successful for treatment-resistant patients.

Researchers are the excited about these developments in hopes of combatting the rising number of depression cases nationwide. Almost 7 percent of Americans 18 or older – about 16 million people – suffered at least one major episode of depression in the last year, according to NIMH. The World Health Organization recently found that “depression is the predominant cause of illness and disability” for boys and girls 10 to 19 years old. In the United States, lost productivity and health care expenses from depression cost an estimated $80 billion a year. And those trends are not expected to slow down. National Institutes of Health researchers project depression to be “the second leading cause of disability worldwide and the leading cause of disability in high-income nations, including the United States” within 20 years.

Read the full story here-

via Is Ketamine the Next Great Depression Drug? | Al Jazeera America.

Stress-Related Inflammation May Increase Risk for Depression

Released: 20-Oct-2014 2:05 PM EDT 

“Inflammation is the immune system’s response to infection or disease, and has long been linked to stress. Previous studies have found depression and anxiety to be associated with elevated blood levels of inflammatory molecules and white blood cells after a confirmed diagnosis, but it has been unclear whether greater inflammation was present prior to the onset of disease or whether it is functionally related to depression symptomology.”

Read more-

via Stress-Related Inflammation May Increase Risk for Depression.

BBC News – People asked to blog about their mental health illness

People with mental health conditions such as depression, anxiety or schizophrenia are being asked to write about their lives online.

via BBC News – People asked to blog about their mental health illness.

(Pressed)

Surviving the Fire

One of the hardest parts of living with CRPS is the not knowing. Not knowing when the fire will ease down, or the icy cold to run warm. Not knowing when the ache will settle or quality sleep will come. Not knowing if you’ll doze off, even when everyone else thinks you’re still awake because you appear to be. Not knowing why you’re being sent to a new doctor, or how the bills will get paid. Not knowing how to support your spouse the way you use to because you can’t work anymore.

Feelings of inadequacies and worthlessness often override feelings of joy and hopefulness.

Yet you still smile…  try to make other’s laugh, you laugh yourself.

The title of this blog is just about right for this post. When chronic pain and depression collide we’re left with pain and despair crashing into one another. And a vicious cycle that if we don’t pull ourselves out of either by self or with help will just keep bouncing back and forth. There’s nowhere to go. Chronic pain often causes depression and in turn the depression causes even more pain. Stress will just exasperate the two. What might come of all this? A horrible Flare-up. What can we do? We have to break the cycle. Intervene!

My RSD CRPS fire burns steadily, when I have a Flare-up it becomes a raging inferno, so hot, like a steam burn. There have been times this fire has become visible to the eye. My skin has appeared to burn from the inside out leaving discoloration that very much looks like steam or hot water burns. My bones ache so deeply they are screaming.

An excerpt of an article/essay I first wrote in 2009 (Flare-ups and Flare up Protocol)

“I’ve learned to help myself during these times. Duration, frequency and intensity is something that I have to take control of. We all have to. We truly have to. The tools I use during these times are called my “Flare-up Protocol”. My flare up protocol includes the 3, 20’s.

The 3, 20’s are:

Exercise (ie, Yoga, stretching, walking, if able, light weights, activity, etc)

Modalities (ie, anything that can be placed on the body for pain relief, such as a tens, heat, hands, etc)

Distraction (ie, Memory master system, games, meditation, relaxation, fun, etc.

These can also be considered coping strategies.

My favorite is laughing.

The 3, 20’s mean 20 minutes of exercise, 20 minutes using modalities and 20 minutes of distraction.

These should be done whether or not one is experiencing a flare, but especially during. And up to 3 times a day.

While it’s easier said than done, the worse thing to do for a flare-up is to do nothing at all. Bringing us back to the use it or lose it theory which is quite accurate. Doing nothing can cripple us just as much as the pain itself.

I imagine a few of you might be thinking “You’ve got to be kidding me?! You want me to exercise when I’m hurting this bad? You must not understand” Oh but I do, I’ve said it and thought it a hundred times over myself.

While some will not want to take this to heart, we have to take responsibility for our own pain, everyone has to learn to and implement their own Flare-up protocols to get through these extra overwhelming, overbearing, debilitating flares.

As people we expect our doctors to take our pain away and we become discouraged when there aren’t any answers to satisfy our questions. We become depressed and insecure, yet We have to remember that RSD/CRPS is an incurable illness. Classified incurable because there isn’t a cure to it. There really isn’t anything the doctors can do to fix it. If the injury is correctable, it probably isn’t RSD. Our health care professionals can help us with medications and procedures, and that’s it really… just help us along.

We’re usually directed to pain management when our other doctors are at a loss. Pain management is just that, management. Again, not a cure. An area of practice that helps us manage our pain, not make it disappear. They are intended to help us live some sort of fulfilling life when nothing else can be done. Pain management is usually a last resort and the rest is up to us.

We might not like it but we have to take primary responsibility for managing our own pain because there isn’t enough knowledge or medical and scientific certainties out there to do it for us.

Flare ups are apart of having RSD/CRPS or a chronic pain condition. They’ll never go away, we have to learn to accept this. But, with practice, we can better learn to control them.”

http://crpsadvisory.com/rsdcrps_flareups_and_flareup_protocol.html

There have been many times I have used muscle relaxation, progressive muscle relaxation in place for exercise laying down.  I do simple Yoga stretches. My right calf has had atrophy for 11 years now and continues to worsen. It’s important to help our bodies not waste away. My exercise is also listening to music and moving my body to it the best that I can even while sitting upon my bed.

So how do you survive it? Relax! Try removing worry from your life. Again easier said than done. I know, I continue to struggle with the same issues. The not knowing, the unknown. What will tomorrow bring. For one thing it’s best not to tell ourselves tomorrow will be an awful day. Why? How do we know yet? Tomorrow isn’t here. Positive self talk is helpful. I should practice more of what I preach. Learn how to get Freedom from Pain and Discover Your Body’s Power to Overcome Physical Pain.

I use my imaginary baskets. In my mind I have 3 baskets. 1 for important things, tasks, people, places,  issues, etc, 1 for the moderate and 1 for it can wait a bit.

Everything is important to me. So this is difficult. I care so much about people. I often times care too much which causes me to carry much on my shoulders. I don’t know any other way to be. I serve, I give, I care and I love to.

I have to decide what is most important to put into the important basket. I need to learn to put more in the 3rd basket. By putting everything into my first basket I get behind, my moderate basket rarely has enough in it. I end up in a crash and burn. If it’s used right it really can work. Even with kids.

When we’re happy, everyone around us is happy. We all know that saying.

Deep breathing is helpful, meditation, relaxation, guided imagery, progressive muscle relaxation, distraction, modalities, I’ll leave out exercise 🙂 , support groups, not carrying the world on your shoulders alone, aroma therapy, bubble baths and soothing music, practicing appreciation, being thankful.

I’ve been scheduled to see a Pulmonary Specialist based on my sleep study results. No one has given me any specifics…  “not knowing”. I admit I’m nervous as I don’t know why. All I was told is that it didn’t seem to show Sleep Apnea which I was tested for.

I do know one thing, regardless of how hard it all is..

I am, so far,  surviving the fire…

 

Surviving the Fire by rsdcrpsfire

and I  hope you are too!

RSDCRPSAdvisory Support Group Opens It’s Doors to All Chronic Pain Sufferer’s

Our Group originated to help inform, guide and support those diagnosed with Reflex Sympathetic Dystrophy Syndrome aka Complex Regional Pain Syndrome/Causalgia. For the families and friends of. Nearly everyone with RSD/CRPS will also have Fibromyalgia, although not everyone with Fibromyalgia will have ever have RSD/CRPS. RSD/CRPS is a Neuropathic pain Condition, Fibromyalgia isn’t. Fibromyalgia is still very painful (I know, I have it, too)

We are now expanding our group to offer the same support to all those struggling with Chronic Pain. If you are struggling with a chronic pain condtion of any kind or know someone who is, please let them know about us. We look forward to meeting you

We are a caring, loving, compassionate and understanding group of people who have been through a lot, yet we are not our without faults. We’ve not only endured pain, but surgeries, multiple diagnosis’, dealt with depression, anxiety, fatigue, insomnia. We’ve been mis understood, put down, been called drug seeker’s, addicts and more. Many of us have been alienated from family and friends.

https://www.facebook.com/groups/RSDCRPSAdvisory.InfoSupport/

A support system is necessary to achieve the best possible chance at a quality of life.

Our atmosphere is often playful, laughing and fun loving. Laughter is the best medicine and distraction ever! We will cry together, encourage one another, lift each other up when we fall. If you have an issue with another, please don’t hold malice in your heart… let it go. The stress and the tensing of your muscles will only cause you more pain. Breathe in, breathe out.

People sometimes have bad days, say things they don’t mean, say things they perhaps do mean, but pain often speaks louder than words themselves. Words can be let go, pain cannot be.  

Chronic pain regardless of what the condition, disease or illness is..  is still pain. Neuropathic pain, Neuralgia, Fibromyalgia, Post Cancer Pain, Diabetic Neuropathy it’s all painful.

We want you to have an at ease, calm and peaceful experience.

This Group was created for you the people since it’s birth.

We welcome you, please join us!

Disclaimer: The information contained in the RSD CRPS Info & Support Group is meant to be accurate yet is not intended to replace official sources. Information contained herein should not be considered error-free and should not be used as the exclusive basis for decision-making. Use of our Websites and Group information is strictly voluntary and at the user’s sole risk. Other resources linked from these pages are maintained by independent providers. We do not monitor all linked resources and cannot guarantee their accuracy. We’re a community of patients, family or friends of. We’re not doctors, specialists, or lawyers.

We take threats and discussion of suicide very seriously. If we learn that you are emotionally unstable, even if the cause is chronic pain, we will intervene on your behalf by either notifying family members or calling your local police department. If we learn from your own words, Facebook posts, or from another that you are going to overdose on medications, or harm yourself in any way that could lead to the loss of your life, we will not turn away. This is not meant to interfere in your personal life, but instead to save your life. If you agree to join our support group, you agree to these terms and conditions. You’re not alone!

Need help?
In the U.S., call 1-800-273-8255 National Suicide Prevention Lifeline

Wishing you pain eased days and nights,

~Twinkle VanFleet Administration  www.CRPSAdvisory.com

twinkle@crpsadvisory.com