There is so much about RSD that doesn't make sense to me. Of course that refers to the disease itself; the mis-firings, the frailty, the inadequate treatments and futility regarding a cure. But, on a personal note, my own current condition is baffling to me. I've read numerous times that the symptoms settle down at some point, and I have found that to be true. After 20+ years, the burning associated with older injuries has subsided...which is a tremendous relief. But it doesn't negate or reverse the disabilities resulting from those injuries...denoting, to me, relief - not remission.
And don't be mis-lead...the frailty is ever-present, subjecting me to new injuries.
Though one would assume the patient is now on "easy street" from the relief, that's not really true because,ironically, that's when the secondary symptoms occur. You know, the vision, the Vertigo, the unbelievable Acid Reflux, the trouble swallowing, etc. Who knew the level of pain or discomfort they could cause? I surely didn't.
Again, please don't be mislead. I am still grateful for the blessings and grace in my life but I was unprepared for this turn of events. Nor was I prepared for becoming bedbound, which happened a year ago this past week. By the grace of God, I can still function in this alternate life and seem to be busier than ever in this battle for my life and the crusade for awareness.
One could even say it's become an obsession for me.
As November comes to a close, let us not lose momentum in our drive and our efforts. Let the strength in numbers intensify our voice; that the world would hear and respond.
RSD/CRPS, Reflex Sympathetic Dystrophy, Chronic Regional Pain Syndrome, Chronic Pain, Disease, Disabled, Disability, RSD, CRPS, National RSD Awareness Month
Monday, November 28, 2011
Wednesday, November 23, 2011
Thanksgiving 2011
As Thanksgiving approaches, I am thankful for the people in my life and the opportunities that God affords me. I am thankful for all the stories and all the stats and all the heightened advocacy in this month of RSD Awareness. I'm glad to have a sense of community and a hope that we're making a difference in this crusade.
May we all have a good Thanksgiving, a good support system and a genuine awareness of God's great love for us.
May we all have a good Thanksgiving, a good support system and a genuine awareness of God's great love for us.
Sunday, November 13, 2011
RSD Awareness Month - Message of Hope
With this being RSD Awareness Month, I would very much like to offer a message of hope to chronic pain sufferers through a homemade Christmas card. Anyone wishing to receive a card can send their address to mgonzales182@comcast.net Christmas is my favorite time of the year and I look forward to this but, due to finances, I can only send a card to 100 people.
Monday, November 7, 2011
RSD Awareness Month 2011
In November as always You see us come forth
Sharing our stories, Discussing our course
The toll of disease The public must hear
To expedite research Ensuring a cure
Of CRPS/RSD
And it’s dire effects upon you and me
Help us unite, God, in spreading the word
And strengthen our voices That we would be heard
Help us to educate Those who don’t know
And teach us endurance As we travel this road
Copyright Mary Jane Gonzales 2011
Sharing our stories, Discussing our course
The toll of disease The public must hear
To expedite research Ensuring a cure
Of CRPS/RSD
And it’s dire effects upon you and me
Help us unite, God, in spreading the word
And strengthen our voices That we would be heard
Help us to educate Those who don’t know
And teach us endurance As we travel this road
Copyright Mary Jane Gonzales 2011
Tuesday, November 1, 2011
RSD Awareness Month
Well, here it is November 1st and the message I've been planning to post was somehow incomplete. I've been planning it for a week but there was something missing and I didn't know what. I only knew I couldn't post until it came to me. What I did know I wanted to write about was a combination of emotions that Nomember holds for me. First, I guess, is the stark reality and sorrow that comes with having RSD. What more can I say? Anyone with RSD knows that no further explanation is needed. I know we're a long way from finding a cure but, on the brighter side, we've come along way; long enough to have LOTS of blogs, websites and research on RSD/CRPS...long enough to even have an "RSD Awareness Month". For me, having had RSD for 26-27 years, having an awareness month is HUGE! Also in the mix of emotions is gratitude. In the spirit of Thanksgiving (another November awareness day), I am thankful in this "alternate life" of pain and debilitation, for the ability to re-invent myself through God's grace and find contentment in Him. Lastly, the part that I knew was missing and important enough to hold up the post came to me as I read today's e-mail from American Pain Foundation. I truly don't mean to copy their message; rather, to personalize it. Though we all have friends, chronic pain sufferers can lose a lot of friends from being too needy/burdensome or lack of understanding that equates to disbelief. Thus, we have much appreciation for those who remain close to us. And, yet, there are those who go above and beyond; giving and doing things that are beyond belief...the unsung heroes in our lives. This thought really struck me when I read the e-mail from APF as I am so honored and blessed by unsung heroes...and I pray that you are, too.
Though November holds more RSD emotions for me, I will save those for my visit with Joseph Aguilino on his BlogTalkRadio show The Positive Experience November 10th at 7 PM EST
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