Mirror Therapy (on the air live tomorrow morning)

Hi everyone

Please join me tomorrow morning August 6th, 2010 at 9:00 a.m PST, 11:00 a.m Central and 12:00 p.m noon EST

For a show on Mirror Therapy and desensitization. I'll be your guest with Host Trudy Thomas http://www.blogtalkradio.com/thematrix777

A chat room is also available during the show.

The show is a live one hour segment (but can be downloaded after the show airs or played directly from the site) You can call in and ask questions too Call in number 347-884-9691

We ask that you bring a mirror, full length for lower extremity or a table top for upper extremity RSD. Bring cotton or silk for desensitization. This is not a requirement, but helpful.

Privileged once again to be the guest speaker on the Living with RSD radio show tomorrow morning discussing/teaching Mirror Therapy and desensitization. My 2nd time on the air as a guest, the last time as co host. The targeted audience is for those with disabilities, in chronic pain or who've lost the use of their limbs or ROM.

Until next time...

3 Weeks Post Pain Block

I had a really good 4 days of pain relief. The pain crept back up so quickly and I think the change in the barometric pressure added to it again.

My body tells me when it's about to rain. It goes crazy days before. I've been pushing myself to have some sort of routine. At best it's dinner for the men each night. I'm not very active at all, my legs only have so much time in a day to keep me up. I plan that up time for preparing supper. I serve them their plates, wash up the dishes and I'm down again. Sometimes I eat, sometimes I don't.

This illness continues to suck the life out of me. It's not just the pain, no energy at all.

I'm often back in bed right after dinner is taken care of. Try to relax to a little tv. Wait and hope to fall asleep and stay asleep, but I'm lucky to get 2 hours at a time.

Sometimes I try to knock myself out with OTC pm meds. (Tylenol PM, etc) I just don't stay asleep. I can never get comfortable.

My body seizers often, myoclonic jerks partially due to Dystonia which I ended up with secondary to CRPS. It's like some one pushed me hard, jerked me violently. I've hit myself in the face before when my shoulders and arms jerked. It's scary.

They are completely uncontrollable. Never know when it's coming. It's all night long and only recently starting when I'm upright or trying to walk. It's usually always been in a laying position.

Every so often, I'm found sitting up in bed in indian style, but asleep. It's the only way to ease the jerking. I assume that's why I do it. They'll let me know to lay back down and I do, but sometimes I do it again not knowing I'm doing it. I find myself sitting up all the time.

I worry over it, but what can a girl do?

I don't use my wheel chair in the home. I use my legs. But it's getting harder and harder. I have to pace myself.

Really that's the only reason they get dinner... pacing. If I over do it, we all lose out.

Our daughters have been moved out for about 6 weeks now I think. I'm the sole female here. 2 men, the son and I.

I may be having 2 more blocks set up at my next pain management appointment. A few days of eased pain isn't much and some mind think not even worth the risk, but in my situation it is worth the breather I get when pain decreases enough for me to smile and mean it.

I'm reconsidering having the nerves severed permanetly. If I do it, I may never walk again. I wouldn't feel my foot/leg.

There are no good options with this illness. Learning to manage ones own pain with the assistance of a pain management clinic is all we can do.

Visual imagery, meditation, distraction, mobilities, meds, spinal cord stimulation and physical therapy.

Move it or lose it.


Until next time

RSD/CRPS Flare-ups and Flare up protocols

RSD/CRPS Flare-ups and Flare up protocols

We often talk about Flare-ups, but what does it mean exactly? Some are unaware of the meaning or feeling, others aren't sure how to use the word to describe the hard, fast, usually short term inflated pain. When I say short term I'm meaning the pain you already endure hassuddenly jumped up, spiked, heightened.

The definition of a Flare-up is defined as as sudden outbreak of flame or light: a flare-up of
the embers. An outburst or eruption: a flare-up of anger.

A recurrence or an intensification: a flare-up of rheumatism (RSD/CRPS)

A Medical Dictionary would define it as a sudden outburst or worsening of a disease or an
area on the skin surrounding the primary site of infection (injury) or irritation.

I've altered some of the words to include RSD for better understanding for those unsure of
it's meaning. The precise definitions are located here
http://dictionary.reference.com/browse/flare+up

Most of us undoubtedly know what a Flare is though there are a few that are unsure of how
to associate the word with the meaning or their pain. I've had a handful of people ask me
what it is and so I wanted to take this time to help them understand the meaning and ways
of possibly easing them.

A young boy may have a flare up, we usually call these growing pains. Those with arthritis
may flare by intense cold. Asthma patients might flare because of allergies.

RSD patients might flare for a number of reasons from light to moderate activity, weather
changes, cooking dinner, playing with their children or grandchildren to nothing at all. It's
important to make every moment count despite the pain or be faced with bitterness, anger
and frustration all our days.

A flare for me is the fire which already burns steadily (7+) on a daily basis to a raging
inferno (10) and isn't limited to a single sensation.

For others it may be a pain level of 2 that springs to a 5 or a 6 that becomes a seemingly
unstoppable 10. These flare-ups might last an hour, can last a week, and some have been
known to last much longer. I am blessed to feel moments of 4/6.

I've been through several flares that was either one very long flare or one rolling right into
another with minimal break in duration or intensity. It becomes hard to tell if it ever ceased
at all until it eases enough that I know I'm through it for the time being.

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.


Do you have a Flare-up protocol? If so, would you share it with us? For those who do not,
it's our hope that through this thread the sharing of idea's and coping strategies become
helpful to one another.

Please feel free to offer your thoughts and comments on the above written as well.



©2009 Twinkle V./rsdcrpsfire


Feel free to link to: http://www.crpsadvisory.com/rsdcrps_flareups_and_flareup_protocol.html

2nd Week of the FRP completed

Cross posted from MDJ.


Evening everyone

The last two weeks have been so hard. I began the Functional Restoration Program last Tuesday as Monday was a holiday. While I was so interested and hopeful of the program on Tuesday, I was late Wednesday because I thought I couldn't handle it. My legs were hurting, my feet were on fire, it was too much. I wasn't going to go in, but I did. Everyday I do PT, everyday I do Yoga, everyday I do relaxation, several times a day I do biofeedback, everyday I set goals and so much more.

My mobility has gone from nearly nothing to weight bearing on a regular basis. It's not often, but I'm pacing myself and working harder to reach each physical goal that I set. My range of motion (RoM) has improved already. My pain level seemed to be a constant 8+ and emotional level was just as high. Today was the first day I had Physical and Emotional (P&E) level of 6/5.

During my Physical Therapy I walk, I do Mirror Therapy, I do ankle pumps, I ride a bike. I've challenged myself to stairs, I play catch with another CRPS patient to increase movements. IT HURTS. All of it! I have quit 3 entire pain medications and Lidoderme in addition to decreasing morphine 15mgs a day. I went from 7 meds to 2.

Trust me, it isn't easy. We spend a lot of time with the psychological aspects of chronic pain. We are taught about sleep, it's importance, how to sleep if one cannot. I rarely sleep. I have extreme difficulty tackling pain and racing thoughts.

It may take me some time, but I will be passing all that I learn on to you.

I have missed each of you,

Warmest wishes

Until next time...

Reflections

Haven't written in a few days and have had a lot on my mind. For one, I just can't seem to shake the pain that invades my body everyday. The last 2 days have been rough. It seems like it's just one flare-up right into the next. My knees feel twisted, my calf is constantly on fire, meds hardly help, so I end up putting myself to sleep with Tylenol PM just so that I won't feel as much pain in my sleep. And hardly any until I awake for some reason.

I started treating my face with a series of lotions and my face is smooth and soft again. Even lines that started to appear are gone. Almost like a glow a woman gets when she's pregnant. I'm not pregnant though. Nope, nope, nope. That's a done deal.

Today I meet with the team of doctors at Compass to determine a plan of rehabilitation for me. Rehabilitation isn't really the right word, I can't think of the word the assistant said to me on the phone, but it's setting up a plan of action to help me achieve some goals either way. Obviously I have been cleared as a candidate for this program.

One I know they're going to help me try to wear shoes again. I haven't wore any aside from hard rains for 8 years and I don't often go out in the rain, only if I have an appointment to go to. We're going to start turning my stim (SCS) off at night, I can't quite recall what else, but today I will learn what we're going to do for sure. While I'll more than likely be sharing with others what I learn as I go in this program, later, I'll be compiling a paper of teaching.

I've been keeping busy Leading the pain group and doing well.

I've been thinking about God and the bigger picture. Receiving at least a dozen of private emails a day asking me to pray for them in their darkest hours of pain. I always do. I've been called an inspiration so many times in open forum and privately. How can this not make me feel good? It does. It always does.

There's a Neurotropin study in Clinical Trial and still recruiting patients for CRPS type 2. Unfortunately the study is too far away for me to particape in.

Something came up in the group that really got me thinking.. One person said they believed all things happen for a reason, something I've thought also, then another person said if they believed that things happen for a reason they'd have to also believe they did something so bad as to have this illness placed upon them. The girl ended the sentence with.. I've never done anything so bad to deserve this.

That really got me thinking... I even found it to be true in many ways. It made me think of myself and my past, growing up, adulthood etc.

I too have never done anything to deserve this. I've always been a helping hand, a listener, a warm compassionate, passionate, always giving, not caring to receive, a life of service of one kind or other.

It reminded me in a way of when bad things happen to good people.

Until next time...

Prayer

This was sent to me by someone I've become closer to over time. Someone who's husband became involved to find this for me, people who could be considered as strangers from a distant in some small ways, but who have reached out with compassion, care and friendship. I can't see this friendship as anything but growing.

I tend to believe that many of us are meant to be in each others lives. Meant to cross paths for the better good. A few for the lesser good. Tests maybe.

This inspired me to the point tears fell. It happened to be sent while I was feeling terrible pain. It was received when my state of being and physical pain was overwhelming.

Within a few minutes of reading my pain began to subside. Whether or not others find this to be true... it is. There can be several reasons for it if one wants to consider that the reading itself had nothing to do with the decrease. At the very least it brought a sense of peace and tranquility within me and that alone could be the contributor of the relief. Had these passages and prayer not been available I truly believe that my pain would not have decreased at that time. I had not yet taken any pain medication. I had not been awake long. I was feeling detached, like I was bouncing in and out of myself. I contributed that to the possibility that I did not take my Cymbalta yesterday, or... during my sleep I did not wake to take my Morphine. Withdraws come quickly with these meds. It's why it's important to take as prescribed and on time. The pain itself is different.

I'd like to share what was sent to me...

"It is important that we approach God with integrity and in attitude of humility. But because we fear making a negative confession, we sometimes cross the line of honesty into the line of denial and delusion. Let's be honest. God already knows what we are feeling. He can handle our anger, complaints, and disappointments. He understands us. He is aware of our human frailties (Ps. 103:14) and can be touched with the feelings of our infirmities (Heb. 4:15)"

"Sometimes when you are in teh midst of discouragement, it is difficult to remember that you have ever known any Scripture. I admonish you to read this prayer aloud until you recognize the reality of God's Word in your spirit, soul, and body. Remember, God is watching over His Word to perform it. (Jer. 1:12 AMP) He will perfect that which concerns you. (Ps 138:8)"

PRAYER

"Lord, I do not understand why You have allowed this trouble to assail me. It was after I began to follow You in obedience that this trouble was manifested in my life. I have exhausted all my possibilities for changing my situation and circumstances and have found that I am powerless to change them. I believe; help me overcome my unbelief. All things are not possible with man, but all things are possible with You. I humble myself before You, and You will lift me up.

I have a great High Priest Who has gone through the heavens; Jesus, Your Son. And I hold firmly to the faith I profess. My High Priest is able to sympathize with my weaknesses. He was tempted in every way, just as I am -- yet was without sin. I approach Your throne of grace with confidence, so that I may receive mercy and find grace to help me in my time of need.

In the face of discouragement, disappointment, and anger, I choose to believe that Your word to Moses is Your word to me. You are mighty to deliver. Because of Your mighty hand, You will drive out the forces that have set themselves up against me. You are the Lord, the Promise-Keeper, the Almighty One. You appeared to Abraham, to Isaac, and to Jacob, and established Your covenant with them.

Father, I believe that You have heard my groaning, my cries. I will live to see Your promises of deliverance fulfilled in my life. You have not forgotten one word of Your promise; You are a Covenant-Keeper.

It is You Who will bring me out from under the yoke of bondage and free me from being a slave to RSD. You have redeemed me with an outstretched arm and with mighty acts of judgement. You have taken me as your own, and You are my God. You are a father to me. You have delivered me from the past that has held me in bondage and translated me into the Kingdom of love, peace, joy, and righteousness. I will no longer settle for the pain of the past. Where sin abounds, grace does much more abound.

Father, what You have promised, I will go and possess, in the name of Jesus. I am willing to take the chance, to take the risk, to get back into the good fight of faith. It is with patient endurance and steady and active persistence that I run the race, the appointed course that is set before me. I rebuke the spirit of fear, for I am established in righteousness. Oppression and destruction shall not come near me. Behold, they may gather together and stir up strife, but it is not from You, Father. Whoever stirs up strife against me shall fall and surrender to me. I am more than a conqueror through Him Who loves me.

In His name I pray, amen."

___________________________________

And in his name I do pray.. Amen

Until next time..

2009 ToDo List

1. Continue to be the best slave that I can be to my Master and with unconditional servitude accept his decision to take another slave when that time comes.

2. Continue to strive harder by sleeping less to spend as much time as I can with my family. They need me in their presence and I need them in mine.

3. Try not to judge a person based on the judgement of others. I can decide for myself and learn for myself. I don't need saving.

4. Let go and toss away all the negative energies amidst life's complications. I don't need drama, I don't seek it and I don't thrive on it, I'll remain content in my little 'ol world. I'll be sure to live longer without the anxiety and stress.

5. Make sure that I'm always available to help those in need, especially those struggling with and attempting to survive RSD(S)/CRPS. Pain is universal, but so is hope.

6. Continue to work hard in finding a cure for RSD(S)/CRPS. Providing information, resources, advocacy, constant research, clinical trials and promoting awareness to the entire world.

7. Continue to work on my degree in Corporate Publishing. It may take me forever, and it may never happen, but I can keep trying. *I already passed the pre req classes with a B average and earned that certificate.

8. Try to keep my body healthy and strong despite the complications. I've beat negative odds before, I can do it again.

9. Be the reminder that when ones life becomes borrowed time, your entire outlook on life changes. It all changes. Everything it once was changes. Show others that if they fix the negatives, hurt and bitterness in their lives now, there will be nothing heavy on ones shoulders to carry around, instead only peace. Pass on in peace.

10. Never step back and never stand down. If someone said, I'm going to die tomorrow, I'll be right there telling them I'm going to live past it. If I'm told it's over, I'll tell you, it's only just begun. If I'm told I can't, watch me, I will. If someone told me they're leaving, I'll say, that's okay, I'll still be here for you. If someone told me to "go get fucked", I'd say thank you, don't mind if I do. And then I'd go beg some. And with it your request would surely be granted. ~winks

Bonus. Life Goes On