Monday, July 30, 2007

RSD Hope - 2006 Conference DVD set of three.

American RSDHope was formed in April of 1995 by Bob, Lynne, and Keith Orsini to provide support, information, and education to the millions of RSD/CRPS patients across the United States and beyond. Keith Orsini has had RSD since 1974. His RSD is full body.RSD Hope provides a great service by distributing information on and about RSDS to any and every one who requests it, all across the USA.

RSDHope now has a most valuable resource to share with patients and professionals. They have compiled a set of three DVDs of powerpoint presentations from their 2006 RSDHope Conference.





Dr Ronald Harbut
was the first peer review journal published practitioner of low-dose ketamine infusion treatment which he helped to develop with Dr Graeme Correll in Australia. Drs Correll and Harbut have been performing this procedure for many years now with demonstrated success. On this DVD Dr Harbut also explains three techniques used in treating RSD patietns with ketamine; low-dose, out-patient, and coma.

In the second DVD when Keith Orsini talks about "Living beyond Pain" he explains profoundly that whist it is the fact we have pain "we need to do what we love to do and simply let the pain come along for the ride."

On the third DVD DR Allan Chino talks about " intractable pain: validation of the chronic pain experience."

Also included in the DVD set is a brief update on the RSD Documentary being made by RSD Aid & Awareness Foundation.

PRICE FOR SUFFERERS & LOVED ONES– $25 PER SET OF 3! (includes shipping)

MEDICAL PROFESSIONALS – $50 PER SET OF 3! (includes shipping)

For the link to RSDHOPE's DVD offer go to the left of this blog under "crps/rsd related articles".Please note also that "How to Cope With Pain" website has further information on one of the other mentioned Ketamine treatments. You'll find the direct link to HTCwP Ketamine article under "crps/rsd related articles" to the left of this blog.

Friday, July 27, 2007

New Poll - Were you stressed before the event which caused CRPS/RSD?

There is a new poll today about whether you were stressed at the time of the event which caused you to develop CRPS/RSD.

In my case I was under considerable stress at the time. I'd moved to a new city, started a new job and had a headache. If you wish to vote click on "Yes" or "No" in the poll at the top left of the blog.

Poll Result for "What kind of pain do you have?"

Of the results collected 100% of people said their pain was burning and aching, 90% had shooting pain, 80% deep pain and nerve firing, 60% cold pain, 20% other pain and 10% experienced lacerating pain.

Chronic pain could be an old memory trace.

Living with Chronic Pain website has mentioned an article in the American Pain Foundations recent Newsletter. It says that A. Vania Apkarian, PhD, professor of physiology and of anesthesiology at Northwestern University’s Feinberg School of Medicine has done research that leads him to believe that "chronic pain appears to be an old memory trace that essentially gets stuck in the prefrontal cortex, the site of emotion and learning." With his new understanding of the pain source, "Dr. Apkarian also found that the longer a person has been suffering from chronic pain, the greater the activity in the prefrontal cortex" which he believes to be from accumulative memory.

One thing I personally know for certain now is that old pain is recurring when I have flare ups with Complex Regional Pain Syndrome

You'll find a link to "Living with Chronic Pain" website to the left of this blog under "articles of interest". You'll find a link to Northwestern University Feinburg School of Medicine under "crps/rsd related articles" to the left of this blog. It's worth singing up for the APF newsletter which provides relevent, topical and up to date information about pain.

Mirrors visual therapy is working again.

Just a quick update. The pain and symptoms are much less. Now The upper back of the right thigh is still hypersensitive but not painful and the area of pain and some burning is isolated to the lower right back. I have no nausea and feel no anxiousness. I don't have complete relief yet but I'm still working on it. I know as I've said before I need to do exercise to strengthen my muscles which support the lower back. Relieving pain is only part of getting better. I want to be strong enough to avoid this flare up again. I'm still daily doing exercise to strenghten my left shoulder which remains weak and a regular site of flare up.

The really interesting thing to me is that this flare up and the last one brought back old pain. I don't for one moment believe the pain of morton's neuroma, plantar fasciitis, achillies tendonitis, bursitis, pain at the site of old adhesive surgery and even pain from where some one in the past trod on my foot with a high heel were a result of these conditions recurring. It has to have been old memory. I'd completely forgotten that years ago someone trod on my foot with a high heel until this pain returned.

Wednesday, July 25, 2007

Mirror therapy works better if you get it right.

With my husband's help I've changed what I'm doing with mirror therapy for the lower right quadrant. As my hubby rightly suggested I was making something simple hard. If I have a mirror in front of me, turn around so that half my back is visible when I look in the mirror I am seeing the mirror image of my left side. To make this easier for me I have the back of the second mirror against my mid back which hides the right side of my back. I also turn the mirror opposite me so that I don't need twist so much to see behind. In the last post I explained that I used two mirrors and the image I ended up with was of two sides of a back (or a whole back), one the mirror image of my left back and the other the mirror image of the mirror image of the left back which resulted in what appears to be a whole back. I was mainly focusing on the mirror image of the mirror image which meant I was really focusing on the opposite side to the one I wanted. OK so today I'm using the much simpler method which I've now done three times. I'm not pain free and still am aware of contact issues with the right leg but the burning in the back and back of the leg are less and I am not nauseous. Also my foot which was chronically spasming has settled. The pattern usually is that pain and symptoms gradually retreat from the extremities back to the original site of pain or injury. This generally takes a few days and sometimes a few weeks. Because I've stared mirror therapy straight away I hope things settle soon.

This could be done with a video camera. I have yet to try that but intend to soon.

Monday, July 23, 2007

Mirrror therapy involves looking outside the box.

My latest flare up after five good days left me feeling nauseous and having difficulty focusing on anything but pain. This time a slight miss alignment in the lower back was the cause. I can now realize that little things that cause pain with some nerve involvement seem to be the focus point of flare ups. Mechanical issues are usually involved.

This time I have burning pain in the back and lower right quadrant involvement which means my right leg/thigh etc as well as the back. I have a strong conviction that my back and thigh are distorted and swollen when this is not the case. I am sitting on a chair now and have a sense where my right side touches the chair that it is very swollen. It is not. I know this happened because I did something that jarred my lower back. I've had this before. Very quickly the symptoms travelled down the right leg with hypersensitivity, burning and nauseating pain. I have a sacral wedge which I lie on and which corrects the alignment of the lower back. The mechanical issue was addressed so now I need to deal with the pain. Remember the brain interprets a message as pain and in chronic pain it keeps the message of pain going even after the mechanical issue is addressed. With the message of pain go messages to inflame and all the other protective messages. There real symptoms. Inflammation is real. This isn't an imagined problem. Real physical protective things are going on in the body.

I followed my plan and massaged the are, soaked in an epson salts bath, applied chili cream and a heat pack. All these things help a little but did not stop the nauseating pain. I was treating the symptoms and not the cause, the brains continual message of pain.

The last flare up I worked out how to use a two mirror make up mirror to do mirror therapy with on my face. This worked, so using the same principle I worked out how it might work for my back. I used two mirrors. I put one mirror with the edge against my back and at right angles to my back and the other mirror at right angles to the mirror. I had to twist a bit to see but worked out that If I changed the angle of the mirrors to less than 90 degrees I could see more easily. I believe if I took a video of this and watched at the same time as doing movement it should work because in fact I would be looking at the left side of my back and the mirror image of the left side giving the appearance of a whole back. This whole back in the image would be pain free and be seen by me in the video image to be pain free.
Therapists who use this therapy I believe have patients move both sides at once, one side being hidden. I do not. Sometimes it would be very difficult to move both sides. It works for me moving only the pain free side. I suspect the secret is to only do it for a very short time. This stops the brain getting used to the movement so each time you do it it's like a fresh new experience.

I then rubbed my good side of my back in a way the would be painful for the bad side. I raised my left leg out to the side in a movement which aggravates the right side of my back. I only did this for about 10 seconds and have repeated a few time, twice last night and twice today so far.
Now the pain is confined to my back only. I'll keep doing this and hope this new flare up resolves soon.

I'll take a photo of this and post later.

Sunday, July 22, 2007

"How Pain Affects Families" on 'How to Cope With Pain' website.

How to Cope With Pain website, a resource for those with chronic pain, their families and friends, and for those who treat patients with chronic pain, has posted the moving story told by a grandfather whose daughter was diagnosed with Complex Regional Pain Syndrome. Tony who has the UK World Health News website, tells of the his family's struggle and how a little girl's strong determination helped her win the battle. This is a wonderful article. You'll find the link to this article to the left of this blog under "crps/rsd related articles".

Saturday, July 21, 2007

Search this blog.

There's great new feature on the top left of this blog.
It's a search box for this site. If you want to see what I've written eg about mirror therapy, put "mirror therapy" in the box and it will search the blog for all articles containing these words.
This is a great time saver for me. Thanks Google!

Friday, July 20, 2007

Big plans!

New support groups.

There are two new support groups both of which allow free discussion of treatments "Living with Chronic" pain has a chat room. It's an excellent site with a variery of information for pain sufferers. "RSD Support" also has a great deal to offer if you are looking for others who are travelling your journey.

My Google Group CRPS/RSD - Taking Control differs from these two in that we look at practical ways of helping and supporting each other. We are interested in research and nutrition and in being involved in our own recovery. Medications are not discussed.

You'll find links to "Living with Chronic Pain" website and "RSD SUpport" to the left of this blog under "articles of interest".

To visit "CRPS/RSD - Taking Control" click on the link at the bottom of this blog. To join place your email in the box at the top of this blog.

Thursday, July 19, 2007

Silver gulls.
Cabarita rocks.
Cabarita wave today.
Bangalow palm loved by Fig birds.

New poll - what type of pain do you have?

Today there's a new poll feature at the top left of this blog. This one's about the type of pain sufferers experience. Please take the time to fill out the poll. You may nominate as many types of pain as apply to you. If your experience with CRPS is different from these please comment and I'll be able to add this to future polls. If you have a suggestion for future polls please let me know.
If you don't belong to google blogger you are able to leave comments as "anonymous".

Wednesday, July 18, 2007

View Blog

Some photos of the area not far from home, the Border Rangers.

I'm posting some photos of the Border Rangers which form part of a caldera in the hinterland about an hour or so away.

Sleep deprivation also affects the brain.

Researchers at the University of New South Wales, Sydney, Australia, New Zealand Occupational & Environmental Health Research Centre and Department of Preventative and Social Medicine, University of Otago, Dunedin New Zealand have discovered that moderate amounts of sleep deprivation significantly affect a persons speed and accuracy in performing tests.

After five wonderful night's sleep I hardly slept at all last night. Burning back and repeated cramps mean I'm in a reasonable amount of pain. This added to the lack of sleep probably explains why it took five attempts to send an email to my friend who gave me a new email address to type into my address book. After four returned emails I took a longer time and was more careful about retyping the email for the fifth try. Then I had a long lie in my hammock in the winter sun. I decided to listen to my body and chill out awhile.

Tuesday, July 17, 2007

"Pain Distracts The Brain" - Medical News today articles adapted from "Neuron" press release.

"Medical News Today" which you'll find by scrolling down the left of this blog has a great article about something we all knew "pain distracts the brain". In fact in their words pain "compellingly commands attention". It is this aspect of pain which has served to protect us an ensure man's survival.

Ulrike Bingel and colleagues at the University Medical Center Hamburg-Eppendorf published their discovery in the journal Neuron, published by Cell Press.

They used a technique in which MRI technology is used to register blood flow across regions of the brain indicating brain activity. Researchers noted that when performing to a visual task whilst enduring pain there was a "parallel impairment of accuracy in subjects' recognition of the images". Thus they know for sure that the "pain distracts the brain".

The researchers include U. Bingel, M. Rose, J. Glascher, and C. Buchel of University Medical Center Hamburg-Eppendorf, Germany. This work was supported by grants from Volkswagenstiftung, DFG and BMBF, and the EFIC Grenenthal grant 2006.

Bingel et al.: "fMRI Reveals How Pain Modulates Visual Object Processing in the Ventral Visual Stream." Publishing in Neuron 55, 157-167, July 5, 2007. DOI 10.1016/j.neuron.2007.05.032.

Go to the left of this blog and scroll down to the last section "Medical News Today" and then scroll down to the article "Pain Distracts the Brain" and click on the link.

Monday, July 16, 2007

Rounding up waves.

Doc rounded up waves on our beach today.

Restorative sleep at last.

Last might was the fourth night's sleep I've had in a a row. Since I resolved my recent flare up I've just had my fifth comfortable day. Up till a short while ago I've felt great. I'm very grateful for these breaks between flare ups. This has only been happening since last December. When I think about the difference between how I was last year at this time and now I realize just how far I've come. I owe this mostly to mirror visual therapy. I have whole body CRPS. People ask me how is it possible to treat the whole body or your back. What I've found to most definitely be the case is that by treating isolated single sided flare ups, gradually over time the whole body benefits, the sympathetic nervous system becomes less reactive and the overall level of suffering is reduced.

I strongly encourage anyone reading this who has chronic pain to seek information about the new science of pain management. Ask your treating therapists what this means for you and encourage them to learn more in order to help you.

Sunday, July 15, 2007

Looking across to the Cape from my beach.

Byron Bay is Australia's most easterly point.
Bird's eye view over the lighthouse.

Saturday, July 14, 2007

Brain Controls Pain: ScienCentral News Video

Prevention article "Natural-Born Pain Killers".

I posted last month about's recent article recent article on "Natural-Born Pain Killers". I commend this article by Richard Laliberts to you.

It examines several investigations into novel ways of dealing with pain. Stanford Systems Neuroscience Pain Lab showed that by visualization techniques and positive affirmations pain perception could be reduced by up to an amazing two thirds.
On the opposite end of this is the discovering that you can actually increase pain perception by focusing on negative aspects and fearing your pain.

This does not in any way indicate that the pain you have is psychological. MRI imaging has identified changes in the brain from changing inputs by such means as meditation and guided imagery and affirmations. Equally MRI imaging has recorded changes in the brain from negative inputs.

These findings make perfect sense to me. I know when I talk about how I'm feeling, I feel worse. When I'm having fun I feel better. Now I know I can actually change the inputs which bring about a change in the brain, I'll be more aware of how I think and feel. I'll also be dedicating more time to "actively seeking happiness".

Sean Mackey, MD, PhD, director of the Stanford Systems Neuroscience and Pain Lab. "It was really exciting to show for the first time that people could direct activity away from a specific region of the brain--in this case, the area that processes pain--and alter their perception of pain at will," he says. "It gave subjects a profound sense of empowerment and opened a window on pain in the brain that has huge implications."

Go to "crps/rsd related articles" to the left of this blog and click on the direct link to this article in

Friday, July 13, 2007

More evidence that "brain control of movement is altered in CRPS".

How to Cope With Pain website refers to a new study by neurologist Esther Gieteling et al. from the Netherlands. This study suports other evidence that "the problem is not (just) in the muscles themselves, but in the brain." The approach to management of the pain of CRPS follows from this research and supports the idea of retraining the brain using guided visualization and mirror visual therapy. More good reasons to take a good look in the mirror.

You'll find a link to this article and some interesting comments to the left of this blog under "crps/rsd related articles".

Tuesday, July 10, 2007

Something else to ponder.

Just as I think the level of stress we were under at the time of the event that caused the development of CRPS is a factor, I also suspect that our life experience with pain may also predispose us to developing this chronic pain syndrome. I wonder if anyone has asked CRPS sufferers what past pain experience they have had. Personally I'd experienced migraines for over 30 years before the accident and I had a migraine at the time of the fall. I think my brain was trained to repeat a pain message and the threshold for this message of pain was probably lower. Add to this the stressful circumstance of the accident(fall into a dark, steep stairwell) and the other stresses at the time (moved towns, new job) and this was enough to trigger the new message of unrelenting pain.
Just my thoughts on the matter.

What works for me to cope with pain and symptoms of Complex Regional Pain Syndrome.

With CRPS/RSD I have learned to take one day at a time. Many things have helped in in my journey to wellness, the most significant of these being Mirror Visual Feedback.

Having breaks between major flare ups is a blessing and an indication that I'm on the right path. Here are some of the things I've found to help with pain and symptoms.

  • mirrors (August archives photos)
  • when doing mirror therapy pay attention to the location of most pain.(July 07)
  • essential oils (still experimenting but amazed so far)
  • breathing out twice as long as in (August) I now do it for a few minutes 5 times a day instaed of once for 15 minutes.
  • resperate machine could be used to control breathing(November)
  • distraction (September archives)
  • magnesium for muscle spasm (September)
  • fish/fish oil for inflamation (September)
  • beetroot for liver protection and antidepressant (September)
  • isometric exercises to reduce pain (September)
  • epson salts warm bath (September)
  • chili cream (capsaicin)
  • heat pack (September)
  • graduated repetition of movements (September)
  • pacing
  • move it or lose it - Bollywood dancing (of sorts) August 07
  • deflated ball gives a great massage (see photo Sept)
  • butterball bath bomb (Sept)
  • water relaxes, calms,slows and improves breathing, helps sleep (Sept)
  • Caring Doctors (Sept)
  • Letting go of worries and avoiding stress (Oct)
  • Actively seeking happiness (Oct)
  • I will take vitamin C if I must have surgery as a precaution. (Nov)
  • eat nutrient rich antioxidant foods. Eas smart. (Nov)
  • use Prantal powder for hyperhydrosis (Nov)
  • make a list what works for me as a quick reference. (Nov)
  • don't despare when I have flare up. Refer to the list. (Nov)
  • Doing the same movement in different ways to reinforce that "it's ok"
  • Following a dental procedure which works for me (Nov)
  • Changing thinking, not "what can be done for me" but "what I can do for myself" (Nov)
  • Eating smart - increasing antioxidants especially vitamin C in my diet. (January )
  • Eating smart - making sure I eat a variety of high antioxidant foods including vitamin C. (March 07)
  • Understanding that while it hurts it's not necessarily harmful!!!

I am a sufferer not a professional. These things work for me about which I am very thankful. If you think something may help you check first with your treating practitioners.

What is Complex Regional Pain Syndrome?

In my opinion it's a shitty diagnosis. Complex regional pain syndrome, formally known as reflex sympathetic dystrophy, is the name given to a collection of symptoms the worst of which is continuing pain out of the ordinary for the event that caused it.

Abnormal changes in temperature, colour, sweating, hair and nail growth, in addition to ongoing pain set crps apart from other pain syndromes. The initiating event may be as simple as hitting your elbow. Light touch is unpleasant or painful, touch that might normally be painful is excessively so.

Early diagnosis and treatment usually results in a better outcome. In many sufferers pain persists for years. This blog is an attempt to remind myself about what works for me to help in relieving the pain and symptoms.

Monday, July 09, 2007

Hinged makeup mirror I used.

Mirror therapy works again.

I am yet again amazed by the effectiveness of mirror therapy. In a recent post I mentioned about a major flare up in the left side of my face after a headache. I was in agony yesterday. It was overcast, cold and windy which I'm sure added to the pain.I was almost convinced I must have a gum abscess but my rational mind kept telling me this was not the case.

After much thought I remembered a two mirror make up mirror which is hinged and clips shut. I experimented and worked out that I could put one of the mirrors at right angles to my face and with the case opened at right angles I was able to look straight across and see my lips to the right and the mirror image of the right lips to the left. I did this a few times yesterday and had a better night last night. The pain hasn't gone yet but is much less than it was and is now confined to the mouth instead of the whole side if the head and neck. Another tick for mirror therapy. Now I remember also to make sure to look at the mirror image of the most painful part.

Something to ponder.

I've looked at possible predictors for developing crps in the previous posts. Now I would like to share my thoughts on another possible factor which might explain why a person develops crps from an inciting event but not at other times and other events. In my own case I was under a high amount of stress at the time of my accident in which I broke my wrist. I had just moved house (three days), started a job in a new place (two days) and had a migraine at the time of my fall. I fell into a dark stairwell which for me was a shock, more stress. I had also been under some stress for the weeks preceding the accident. I think that I most likely had a raised level of free radicals due to the ongoing stress. I was unaware of the need to eat foods high in antioxidants to deal with free radicals and wasn't taking any vitamins or supplements. You can see where I'm going here. Is it possible that a raised level of free radicals and/or stress could be another risk factor for the development of complex regional pain syndrome after an inciting inciting event?
Something to ponder.

Looking at ways to minimise the risk of developing CRPS.

In my last post I was looking at possible predictors for development of crps. My principal reason for doing this is to assess if my children could be at risk. In my opinion there is enough to suggest that they could possibly be at risk. Now I am determined to look at ways of minimising any possible risk.
Zollinger PE, Tuinebreijer WE, Kreis R, Breederveld RS. Effect of vitamin C on frequency of reflex sympathetic dystrophy in wrist fractures: A randomized trial. Lancet 1999;354:2025-8. found that taking Vitamin C after surgery produced a significant reduction in pain in CRPS after surgical correction of Colles' fracture.

More needs to be known about CRPS predisposing factors.

Not enough is known about predisposition to conditions such as complex regional pain syndrome. CRPS patients are left with chronic pain, vasodysregulation, and other symptoms. The predisposing factors are unknown. Genetic factors undoubtedly contribute, but have not yet been identified.

Researchers at Massachusetts General Hospital ( MGH ) have found the first evidence of a physical abnormality underlying CRPS. They reported four CRPS patients also diagnosed with the classical or hypermobility forms of Ehlers Danlos syndrome (EDS), inherited disorders of connective tissue. They hypothesized that "EDS might contribute to the development of CRPS.

Saturday, July 07, 2007

Happy mail.

Coping with CRPS/RSD one day at a time.

A few days ago when I was feeling great I almost convinced myself that I may have put this syndrome into remission. I am enormously grateful that since last December I am having a few days break between major flare ups.

The last flare up made me realize that I have to focus on the original site of the flare up to relieve symptoms. My last one was caused by rotator cuff tendonitis in the left shoulder. However the pain and symptoms included the whole left side. Watching my good arm move in the mirror only brought about some relief. It wasn't till I realized I wasn't actually looking at my shoulder and I changed to looking specifically at the shoulder in the mirror, that in two days the pain was gone.

Now I have another problem. This one was caused by a headache. I have sleep apnoea and my CPAP mask broke so I went a night without. Sleep apnoea can cause you to wake in the early hours of the morning with a headache. This is what happen two days ago. Headaches trigger CRPS symptoms for me. You may remember from previous posts I take Vitamin B2 to prevent migraine. There is a Berlin double blind study that supports this. I take less than the dose used in the study and I take it as a multi B dose. This is a very effective preventative for migraine and works well most of the time for me. Google "migraine Vitamin B2" for the research. I use a CPAP machine so that I don't get the early morning headache. I do all in my power to prevent headache as it's a trigger for worsening CRPS for me.

Today the flare up caused by the headache involves the left side of my face. I can't tolerate hot or cold drinks and really want a hot cup of tea. My face and ear are hypersensitive and this extends down the back to the back of the left shoulder. I've had shooting, like stabbing with a needle, in my upper back on the left. I was so convinced that there was something there causing the shooting nerve pain that I kept rubbing my skin until now it's a bleeding mess. I should have realized it was just the aberrant nerve firing that goes with CRPS. Pressure eased it. I should have been wiser and just pressed down on the area instead of rubbing. The brain is a powerful thing and the message that something was wrong was very strong. My teeth are on edge and my gums are swollen and bleeding. I've cleaned and flossed my teeth several times as it feels like something must be causing the problem.

I know in my rational thinking mind that there is nothing wrong with my mouth. The swelling and bleeding and nerve firing are just symptoms created by my brain latching hold of the "there's somethings dreadfully wrong" message and causing symptoms like swelling and inflammation.

The tricky bit this time for me is that I cannot think how to use mirror therapy to relieve symptoms. So far I'm applying chili cream (capsaicin) because capsaicin breaks down substance p which is a neuro transmitter. This should reduce the painful messages. I'm applying heat packs and using a mouth wash in case of infection. I'm avoiding hot and cold drinks and eating on the good side. I'm massaging my face, head, ear and back. I'll be having a warm bath soon and put my face in the epson salts warm water. After I post this I'm distracting myself with enjoyable things and avoiding any stress. Most importantly I'm breathing out twice as long as in and doing this five times a day.

I will refer to my list for other things which might help. I know this will settle in time. At least now I know I can look forward to breaks between these flare ups. I'm having a difficult time today but I can see the bigger picture and know that I'm winning the battle. This is such a big difference to this time last year when I really felt I was going downhill fast, I was desperate and quite frightened. Finding mirror therapy and having a wholistic approach to helping myself has made that difference.

Wednesday, July 04, 2007

Just a spin on the perspective!

"How does pain affect your independence? Do you push yourself too hard? Do you hide the fact that you're in pain? Is it hard to ask for help?
I was invited to address these questions, along with several other people who blog about pain, by HowToCopeWithPain To read the other posts on this topic click on the link to the left of this page under "crps/rsd related articles" to the left of this page.

There is a tremendous sense of loss mixed with a certain amount of anger and disbelief when something as profoundly life changes as chronic pain affects us. It’s normal to clutch on to what we perceive as our independence, to try and still do the things that seem to define us as a valued human being. It’s particularly hard if we are used to the role of caring and helping others. This aspect of having to ask others for help I found particularly hard. My dying friend helped me realize that by allowing people to help her, people felt they were doing something for her and felt good about themselves.

With chronic pain, the plain fact is that if you push yourself too hard and over do things, the “pay for it” recovery time is long. It’s one step forward and two steps back. It isn’t easy. I hate asking to get my needs met but I’ve had to change my thinking on this and look at life as full of opportunities.

In a recent discussion in relation to children Rain, co-owner of the google group crps/rsd taking control wrote

"This may sound strange, but if your children assist you with
ANYTHING!, it makes them empowered, and helps them find strength in
themselves. This is a lesson that we all have to learn at some point,
we are what makes ourselves strong or weak. It is not everyday of our
lives that Mom or Dad will be holding our hands. It also gives them a
sense of learning compassion and giving
. You have a chance to see them grow, learn, and become people.

Before I got sick, I was really busy with work, and now, I
see so much of what I missed over the years with almost everything I
come in contact with. My sights have changed into what should have
been important all my life.

I am grateful for getting ill as much as I hate it. I see my family,
I enjoy the savor of my meals and I smell the flowers. This is a

Redefining who I am. Not who I used to be.

Just a spin on the perspective!"

Monday, July 02, 2007

Baby Turtle Dove.
Julian Rocks on the horizon.
Contemplating the ring.

Oh happy days!

Just an update. My shoulder and left side are still fine. The mirror therapy (once I realized what I was doing wrong) worked like a little miracle. Each time it works I am amazed and I never really believe it will. Looking at the mirror image of your pain free limb somehow relieves the pain and symptoms of CRPS/RSD.
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