They don't "see us".

Although I didn't plan to post about RSD this month, I was just talking with a friend about the poem "A Crabby Old Man" (posted by Liz Hall). In the discussion with my friend, Shirley, she broke down in tears saying she couldn't continue reading Liz's observation that people don't really "see us"...admitting that she misses the old me and she mourns for both of us the busyness and vibrancy that was lost too soon and the plans of us enjoying old age together. My response was to try and console this loved one that although those things were in fact lost to me and I, too, mourn them, my consolation is that I now have an added dimension to my life. Though hard to explain or even grasp, I used the analogy that as a baby grows to adulthood and then to old age, things in adulthood are missed but old age is not without blessings. In old age, you may be lacking abilities, vigor and vibrancy but those things may be replaced with other signifficant qualities and activities. In my case, the "alternate life" holds crafting, writing and a drive to make a difference...and truth be told, the able-bodied Jane was responsible and fun-loving but not intent on making a difference in life. Now, however, it consumes me. My main purpose used to be raising a family and sharing the Gospel. Now there's an added dimension of ministering to hurting people and making a differene in the cause of RSD. Though I would not choose this lifestyle, I can't deny that I'm better for it.

The Christmas Season

I'm trying my best to make RSD
Be dormant this Christmas, or better yet flee
I'm trying my best to lay it aside
And focus on Jesus, my Saviour and Guide
The reason for joy in the depths of my soul
Despite being broken, He makes me feel whole
He makes me complete in the core of my being
As through Him, it's truth and love I am seeing



In this month of December, my time will be devoted to a Christmas blog, to celebrate the birth of our Lord and Saviour, Jesus Christ. Please visit my other blog...A CHRISTMAS COLLECTION...and rejoice with me in the gift of His presence.


Poem Copyright Mary Jane Gonzales

RSD - A MYSTERY

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.

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.

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.

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

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

#7 Last day of poetry

Glimpses Of Your Love

In the ravages of illness
In the sorrow and despair
I see glimpses of your love for me
And evidence of care
For despite the tribulation
You are always by my side
In the furnace of affliction
And the many tears I cry
Lord, your grace is so sufficient
Meeting needs of every kind
Paying bills without an income
Causing hearts to re-align
Forming something out of nothing
Making ordinary great
And producing such a witness
From a seeming hopeless fate
Lord, I marvel at your wonders
And your heart that loves me so
Lord, through blessing or through trial
May my praise forever flow
　
Copyright Mary Jane Gonzales 1-11-05

The 6th poem of the week

This poem is the stinging reality of life with RSD.  Tomorrow I will end the Week of Poetry on a more positive note but, for now, this is the story that needs to be told...this is the awareness that needs to be raised.



Rock Of Ages


Father, I am sinking
Would you throw to me a rope
Would you please confirm the scripture
That I'm never without hope
Would you strengthen me in spirit
As I trod this rocky road
Would you bear for me the burden
That is such a heavy load
Would you wipe away the tears
That keep falling from my eyes
Would you lovingly send mercy
When you hear my anguished cries
Would you not let pain consume me
Taking focus out of prayer
Would you be my Rock of Ages
Greater than my worldly care


Copyright Mary Jane Gonzales 11/96

5th Poem of the Week

MOVE UPON ME, LORD


Father God I pray that you would get me through this time
That your spirit move upon me Lord with laughter and with rhyme
That the ashes turn to beauty and the weeping turn to joy
That the world would see the blessings and the help that you employ
That your grace would be sufficient and your mercies new each day
That when undergoing trials you would teach me how to pray
You would teach me how to worship and commit to you each day
All the things that I hold onto Lord no matter what I say
That my eyes would not be blinded...that the scales would be removed
That you’d strengthen me in spirit and my heart would be renewed
　
Copyright Mary Jane Gonzales  5-12-99

 

4th Poem of the Week

SETBACKS

God I truly thank you
That it wasn't any worse
But I feel as if my body's been
Attacked by Satan's curse
Every day holds a new injury
Or a problem of some sort
When talking with my friends
I'm embarrassed to report
The ups and downs, the back and forth
The setbacks that occur
Frustration I experience
When healing is deferred
　
Copyright  Mary Jane Gonzales 1998

 

3rd Poem of the Week

STRENGTHENING MY FRAME

Father God I pray
that you would help me with my feet
That you'd get me safe to bed
and you'd grant me restful sleep
That you'd take away the swelling
and diminish all the pain
That you'd soon begin the process Lord
of strengthening my frame
That your grace would still continue
in a multitude of ways
And that you would soon incorporate
healing to my days
Lord I've had to lean upon you
in a state of total need
And while staying by your side
I desire to be freed
From the bondage of dependence
that is burdening my friends
To a relative remission
that on God alone depends
Lord it's not that I'm ungrateful
I see all that you have done
I'm just longing to go forward
that captivity be undone
　
Copyright  Mary Jane Gonzales 7-99
　
　 

2nd Poem of the Week

IT’S IMPORTANT

God it’s so important here that you be glorified
As you count all of the agonizing tears that I have cried
It’s important God to know I’ve not run the race in vain
As I wearily endured such a heavy load of pain
It’s important in this tunnel God to see light at the end
It’s important for the world to see that you’re my closest friend
It’s important that they know Lord despite my stinky flesh
You and I are in communion and with you I try to mesh
It’s important that my witness not relate to sin of man
But in greater part to you as they see your outstretched hand

Copyright Mary Jane Gonzales
 

A Week of Poetry

I thought I would share some poems that stem from RSD.  Though most of them end on a positive note, some of them begin with great despair.  So I will play it safe by starting with inspirational ones rather than dark ones.  (One a day for a week)


                                                                              IF TO YOU

                                                          God, my life may be simplistic

                                                            But there’s beauty all around

                                                          And I’m glad my eyes are open

                                                            To the joy that can be found

                                                              In the smallest little detail

                                                            Like the blooming of a plant

                                                       Or your grace that sends provision

                                                              For all the things I can’t

                                                                Or the therapy of pets

                                                        Through the love they freely give

                                                        And the comfort of your presence

                                                                No matter how we live

                                                           Whether busy, whether quiet

                                                            On the move or standing still

                                                      We can have peace and contentment

                                                              If to you we yield our will

     

                                                         

                                                           Copyright Mary Jane Gonzales

Encouragement

Although writing about RSD is easy because you live it and, therefore, know it…writing about it can also be hard in the sense of distinguishing between the difficulties and the blessings. What blessings , you ask! Many! Like perseverance/tenacity; that determination and fighting spirit that pushes you on, against all odds. You may be battling pain only, you may be battling pain and limitations, or you may reach an impasse, whereby, certain body parts that limited movement before, now prevent movement. Regardless of the place you’re at, it’s your body, not your mind, that is being diminished. You are still you, albeit functioning differently. Like the saying ”If Plan A doesn’t work, switch to Plan B.“ For me, doing that gives purpose; it keeps me from stagnating and it keeps me from sinking. So, without meaning to minimize the loss of our normal life, the passions and abilities we discover within our alternate life are the blessings to which I’m referring.
Those of us with RSD are in the fight of our life; trying to survive the pain and hold onto whatever abilities we have. I, for one, have learned that I took things for granted. I assumed I would always be able to walk or brush my hair, or…(fill in the blanks). And I have learned how to make lemonade…haha! A very important life lesson that sometimes involves “searching” for good, as opposed to “seeing” good. This takes daily practice, and it doesn’t mean someone is oblivious to their suffering. It means they choose to rise above it…and probably more for the sake of survival than for excellence.
Having persevered for 26 years with RSD, I try to encourage others with the disease but I need to encourage myself, as well, as I can‘t give what I don‘t have. I find my encouragement in the Word of God and in the person of Jesus Christ. I don’t say all this to preach to anyone. I say it to offer hope and encouragement to those who are hurting, that you would know there IS a strength greater than your own - just for the asking. There is hope for healing and the promise of sustenance. There is love unconditional and life eternal. Christianity is a relationship, not a religion.
“Trust in the Lord with all your heart and lean not on your own understanding. In all thy ways, acknowledge Him and He will direct your paths.” Proverbs 3:5-6
“Taste and see that the Lord is good; blessed is the man who takes refuge in Him.” Psalm 34:8
This was meant to edify, and I sincerely hope that it ministered to someone.
Blessings,
Jane

A Growing Faith

A Growing Faith

 (RSD Journal from 7/10 - 9/11)

*

So much has happened since I wrote the first book.  The great care-giving supervisor I had back then quit her job and even left the home health field altogether.  I can tell you honestly that I was calm and trusting in God.  I knew the pressure she was under at work and that she needed to make a change for her own well-being.  She is so much better off now, which is good.  She’s an exceptional person, to whom none can compare.  Sadly, though, that leaves me without a buffer/ally/support.  Hence, I have a lot more challenges and battles again. .

Also in the past year, I have incurred new injuries that present horrendous pain and greater limitation.  These added disabilities could in time, apart from God’s grace, lead to not living or functioning on my own.  God is still God, and He is still faithful and this is yet another level of trust and faith for me to climb.  I don’t doubt His provision but I feel somewhat resistant to walking that path.  Not that I would have a choice in the course of my life but there’s always a choice of attitude; whether we go peaceably or resentfully.

**

In the marketing stage of the first book, I sent out letters to RSDS support groups to announce the book, and some people responded back; which lead to new friendships or acquaintances.  This was great, of course, but it was also like culture shock because suddenly I was interacting with people who understood my disease/situation.  There were so many stories; with both commonalities and differences.  I was amazed at the number of people who were crusaders for the cause; through blogs, websites, events, etc.  I kind of felt guilty that I had waited so long to get involved, that I had not acted sooner, that I had been an island unto myself, so to speak.

Now I’m seeing this vast movement of people, rallying together for the cause.  The numbers are astonishing and there’s strength in numbers so, no doubt, there will be great effect.  I have such hope for strides in research, leading to treatment and a possible cure.  Though, at the same time, I have great sorrow that it may come too late for me.  I have an e-mail friend who went to the hospital this weekend in an ambulance and was shocked that none of the ambulance crew had ever heard of RSD and later, at the hospital, only one person had heard of it.  Because not much is known about the disease, those affected by it are subjected to standard protocol which could jeopardize them severely.  Yet, in the same week, news broke that “researchers have identified a gene related to chronic pain; thereby, signaling a significant step toward better understanding and treating of the condition.”  What exciting news that is!

***

One of my closest friends hurt her foot two years ago.  She has suffered intense pain and was recently diagnosed with RSD. The diagnosis came as no surprise because her symptoms were identical to mine.  Her pain was so bad that the doctor had her on Morphine, until recently, when she went to an acupuncturist and it took away all her pain.  She does quite well with the acupuncture as long as she goes three times a week, but if she misses a treatment she will re-lapse.  Apparently, it’s like everything else out there; a band-aid , not a cure.  But to be fair, she hasn’t been going very long.  Time will tell if a cure is on the horizon.  Yet, even without a cure, relief is welcome.

Ironically, I had gone to an acupuncturist years ago but, when he discovered I was also seeing a chiropractor, he stopped treating me.  He said he wouldn’t treat me if I was seeing someone else because, when I get healed, he can’t take the credit for it.  Since I would not give up my chiropractor who I had been seeing for probably a decade, I forfeited the chance at acupuncture.  I hate that it worked out that way but I do understand his point.  Eventually, even the chiropractor stopped treating me because I was too frail.  He said I had the body of a 90 year old woman, and that was like twenty years ago.

****

The new injuries I referred to in chapter one are injuries to the shoulders.  Note that is plural.  The left shoulder got injured first when I was stripping the bed.  I tugged at the sheet and suddenly pain exploded in my shoulder, which radiated down my arm; encompassing the elbow and hand.  The pain has lasted a year, so far.  That limb is so vital to me maneuvering in and out of bed as I have to scoot across the bed on that elbow in order to get up.  So now, much of that movement involves crying or screaming out in pain.  Using my right side for that is not an option, as my right side is even more limited than the left side.  And, because of the “mirror image” factor, my right shoulder has now been injured just by reaching for something.  Needless to say, life has become even more challenging and faith is needed more than ever.  I know not everyone believes in God and I know to them I may sound fanatical, but I know He is real by what He has done inside me.  I often wonder…if pain and debilitation are so hard for me, a believer who leans on and trusts in a mighty God,  how on earth does an unbeliever cope?  Who do they lean on and trust in that is big enough or capable to effect their situation?  Where do they get the strength to overcome trials and sorrow?

*****

Life is so different since the shoulder injury; not just the excruciating pain but also the added limitation.  It doesn’t accommodate crafts like before.  My new pastime is reading, my new endeavor is marketing and my new mission is raising public awareness of RSDS.  Through publication of In the Blink of an Eye, I have created Facebook, My Space and You Tube accounts.  Technology changes so rapidly there is always something new to learn, and I enjoy that.  Do I mourn the lesser pain and the loss of crafts?  Yes!  But I appreciate the ability to be productive in any form.

In the years that I’ve  had RSDS, it’s been my faith in God that has kept me going:  the faith that He would sustain me through everything…and He has.  But I remember one time when I resisted God.  It was when I hurt my left hand, and I felt that my problems were too big for even God.

Now, with my shoulder so bad, I found myself resisting again…telling God I didn’t want to walk this road (pulling my hand away from his, like a child does to a parent).  Naturally, that was unsettling.  I knew my resistance was separating me from God, and ultimately I concluded that I was better off with God on this road than going my own way without Him.  With that realization came the prayer that I would walk in sweet fellowship and submission to God.

I believe there are no super Christians; just ordinary people called or expected to do extraordinary things (like losing a loved one, living with disease, etc.)  I can only pray (figuratively) that each time I fall down I will get right back up and, too, that I will finish well.

******

Most all the people I’ve met who have RSDS are speaking out about it and working toward change.  One woman has a website, a blog and a support group.  Another woman has a wellness store, a website and a support group.  Yet another has yard sales to benefit the RSDSA.  The internet is loaded with blogs and websites related to RSDS.  So, the classification of rare disease is not from the number of people affected by it.  Rather, it is because so little is known about it.  This past weekend (Labor Day) was the Muscular Dystrophy telethon and Jerry Lewis was saying that 45 years ago when they first started out, the chance of a cure was very slim.  Now the chance of a cure is very good.  Imagine what feelings of hope that stirred in me (and every other person with a debilitating disease) as it means there IS hope of a cure for RSDS.!

*******

In this heightened state with the new shoulder injuries, I have also had leg ulcers for 6 out of 10 months.  Leg ulcers are dangerous and painful and require wound care treatment.  In my case, poor circulation causes body fluids to seep out the pores, which leads to ulcers; but, with or without ulcers, the moisture from the weeping creates fungus (which is neither fun nor easy to deal with).  When cleaning the ulcers and/or fungus, the wash cloths can’t be re-used, so that can be quite costly, buying wash cloths each week only to use them once and throw them away.  Plus, linens need laundering every day from the weeping.  That, too, is costly if you use commercial machines. 

With regard to the shoulder, it may have a torn rotator cuff in addition to RSDS but, since I am not a candidate for surgery, we’re not pursuing it.

With regard to venous stasis ulcers, I have had them yet again and worse than ever.  From the end of my toes to the mid shin was one big oozing, bleeding,  mess that became one gigantic scab, which landed me in bed 24/7.   Sadly, this was the fault of my nurse who saw the ulcers coming back and wouldn’t increase my visits/care.  When my condition got this bad as a result of her neglect, we talked about it and she admitted her wrong but did not apologize.   I had been very fond of her, but jeopardizing my health like this was too much for me to bear; not just pain-wise, but more so robbing me of my independence.  However limited it had been, I treasured the ability to get around my apartment for things I needed; and now that was lost to me.  It remains to be seen whether or not I will walk again.  It doesn’t look good but faith and determination are powerful forces to which I cling.  Regarding the nurse and what had transpired, I decided to let her go.  So I changed agencies and ended up with someone better who was far more gentle and came every day, rain or shine.  Another contention for me with the old nurse/agency was the standard treatment called “Debriding” which had worked for me in the past but was not working for me at this time.  So I came away from that experience with a fierce determination to take charge of my own care and well-being, meaning that I would not sit back and let people dictate to me what would or wouldn’t be done concerning my care.  So with the new agency I specified what I wanted, based on the uniqueness of my body i.e. special needs.  With my doctor’s consent, the new nursing agency agreed to try this unorthodox treatment plan which worked out wonderfully for me.  The ulcers , though, (being so bad)  required total bed rest and took 2 months to heal enough for me to even attempt sitting up.  Because of the many disabilities (particularly, the shoulder), the now healed ulcers were just the start of the road to recovery, as my body had weakened over two months and I had to begin the journey back with only 15 minutes of “sitting up” per day; increasing it a little more each week.  When combined with the shoulder injury, I am not yet able to sit up on my own; though I’m determined to get there.  And even if I manage (at some point) to do that, the next step would be ”getting up”.  All of this is a lengthy process and a scary one in light of my limitations, but my faith in God sees me through.  Although I am still in bed, I have no complaints of discomfort or discontent; which I find amazing.  In addition to that, He has…at the worst time of my life, given me the best care possible.  A skilled and caring provider, a close friend who came and stayed with me for several days at the height of the pain when I could do hardly nothing for myself.  Plus, a friend who took over my grocery shopping to help out the caregiver; as well as assistance from neighbors who let me call them day or night, who also ran errands and cooked some meals.  More stories of grace, just like the first book.  I am also amazed that a wound that size did not scar one iota.  Kudos to my doctor, who works with me, adapting to my special needs, and a nurse who does likewise.  I am so blessed!…And if telling my story can help someone else, that would be an added blessing!

********

On this journey of restoration, although I am intent on sitting up every day and regaining strength, there are times when new injuries prevent me from doing so; like today (a hip injury) and last week (a hand injury).  It’s disappointing because it causes me to lose momentum, but I can’t dwell on it.  I have to be tenacious in my pursuit.  And I need people close to me to “go with the flow” by moving on when possible and holding back when necessary.    Whether it’s a nurse, caregiver, friend or family member, they need to trust/believe me, not judge me.  If they don’t trust/believe me, their perception will hurt and hinder me.  Common perceptions (of people unrelated to the medical field) are:  thinking I’m lazy, that I don’t try hard enough, I’m a drama queen/attention seeker, etc.  These attitudes are toxic and may need to be weeded out of your life.  Surround yourself with supportive, nurturing types.  It adds so much to your quality of life.

Well, it is now weeks later and I have had a barrage of injuries, each worse than the last, which have all lingered.  It‘s pretty discouraging.  And my toes are falling more and more each day;  also discouraging.  Yesterday I cried because it’s looking more and more like this might be  permanent.  That doesn’t mean I’ve given up hope.  It just means that I have  to consider this might be the will of God, for a particular purpose or plan.  As much as I dislike that thought, I’m trying to be yielded.

Here I am again, weeks later still.  Not only have I not healed from the injuries I incurred while trying each day to sit up, the accumulation of injuries  to the shoulder, back and buttocks have rendered me more impaired.  Plus, my shoulder and hip have become concave;   meaning atrophied (which prevents me from even trying to sit up).  I am beside  myself!  How does one explain (or live) a total trust in God despite feeling the weight and heaviness of despair?  How does one abide with the almighty when everything dear and vital to them has been stripped away?  I started to say “I don’t know.”  Then I realized that actually I do know.  I’m referring to the love…the love that surpasses any I have ever known, a love that is truly unconditional and cares and provides for me better than any other ever has; strong enough to give “peace that passes all understanding” and “calm amidst the storm”.

If I couldn’t abide in the Lord, I would have TOTAL despair and darkness.

*********

I started a blog recently, hoping to help and affect others with RSD; hoping to raise public awareness, as well. I try to write in it only when I feel inspired of God, instead of my natural ramblings.  I recently wrote a song about my journey with RSD and it has been put to music.  I heard it sung today for the first time and it brought me to tears.  I pray that God will expedite the full recording of it so I can share it with the RSD community.  The world of chronic pain sufferers is increasingly vast and it’s important for everyone to tell their story for the sake of awareness and research.  So, herein, is Part Two of my story.  Why do I call it A Growing Faith?  Because the less able I become, the more obvious His provision is.  I could go on but that’s the bottom line.

At present, I am still in bed; unable to get up on my own and too frail to be lifted by a person or a device.    Since being in bed, I have found it very hard to read lying down, although I am able to craft lying down.  Who knew?!  Lastly, believing  there is a divine purpose in this, how can I complain about my suffering to the Lord Jesus Christ, knowing all that HE SUFFERED FOR ME?

A CHARMED LIFE

Although, this post is not about RSD, that's ok because RSD is not the sum of me , just a part of me. This post is about my memories of growing up in a small tiown.

A CHARMED LIFE

　

　

Though young at heart, I am a senior citizen (older than dirt, haha). Despite growing up in a dysfunctional home, I have great memories of growing up in New England; ice skating at the park, roller skating down the hill where we lived, the candy store and ice cream parlor nearby, four seasons, foliage and snow. Our home in Reading, MA, was a big two-story house with lots of charm and lots of hiding places. It had two attics, two basements and two long porches, a banister to slide down and a hidden stairway that had been cut off (becoming yet another hiding place). I remember boy friends and best friends and the local movie theater which cost 25 cents for the matinee. I remember climbing out my bedroom window and playing dolls on the roof of the front porch. Although, my favorite memory is of the wintertime; as we lived on a hill and the side of the house had a rock wall extending from the back porch down to the back yard. Add to that the height of the porch railing and now you have a good distance, ideal for jumping off the railing into the snow mounds below. Though this account does not detail the antics of a mischievous child (like skipping school, sneaking out at night, etc.), those too are cherished memories. Apart from the tumult of a dysfunctional home, the setting where I grew up was similar to a Norman Rockwell painting. It was the 1950’s and 60’s in a suburb of Boston. My dad worked for (and later owned) the town cab company, my mother worked at the town diner and we would ride the train into Boston to attend Red Sox games. We were big fans, especially of Ted Williams and the like. Now those were the days. My older brother and I were close in age, so he would get crushes on my friends and I would get crushes on his friends. The bowling alley was the local hangout, as was the drive-in movie theater. They were simpler times back then that evolved into fond memories. Roots grow deep and love endures. We may stray at times but family is forever and I’m glad that my siblings and I are close knit.

It’s funny how even little things can leave a big impression; things as simple as doing the dishes. That’s where I learned all the secrets typically kept from children…like Santa Claus is not real, there is no Easter bunny, and Mommy was married to someone else before Daddy. WHAT???????????? Yup! She eloped as a teenager and Grandpa had it annulled. Oh, my gosh! No wonder I was a tattle-tale. It probably stemmed from all the times of saying “MOMMMY! Nickie just said……………..!  And the baby (the favored one), however cute, was not welcomed to tag along with me (the big sister) as it interrupted my fun. Good thing roots grow deep and love endures.

In my pre-school days, I would have tea parties with my best friend; in a wonderful playhouse that was built by her dad. We used to have such fun…until my family moved away when I was six. I missed her terribly but life was too busy to visit back and forth across town, as my mother worked two or three jobs to support us. My mother was very domestic and made all my clothes. Plus, despite working so much, there was always a plate of home-made cookies awaiting us when we arrived home from school. To this day, my childhood friends remember that fondly.

In elementary school, I met my next best friend and we were inseparable. They had a huge house and I would sleep over a lot. I even lived with them a few times. Their family kind of adopted me and I came to be called “the fifth sister”. We would pick fruit from their orchard and vegetables from their garden. We carried fresh tomatoes with us everywhere we went, even a salt shaker. We would make pot holders and sell them to earn money for Christmas shopping. We even ran away together once.

In high school, I had another best friend and more excitement. She, too, was very special and we had LOTS of fun together. Even in adulthood, I wouldn‘t dream of going home without visiting her. The friends I grew up with were remarkable then and they’re remarkable now.  I always felt that growing up in Reading was “a charmed life” and, even though so much has changed over the years, I know from my former classmates who still live there that it has remained an ideal community.

　

　

　

　

　

　

　

　

　

　

I Have Concluded

I LOVE MY LIFE! …most of it, anyway.

　

Do I want to be bed bound? NO       But is it without redemption? NO

While it’s true that I live with horrendous pain and debilitation, confinement and related issues, it is also true that I have a life. I may not be able-bodied any longer but I’m still ABLE….able to live at home, able to have adequate care, able to do hobbies, able to function in my own little corner of the world. Am I seeing through rose-colored glasses? No. I see the bad and I cope with it every day, but it’s not my focus. Rather than being consumed by despair, I want to be cognizant of grace. Just as Joseph Aguilino found his entrepreneurial “gift” through RSD, I found my spirit; the spirit within that fights to overcome every trial, the “stretching” of God to meet every challenge, and provision of God to meet every need. Though I would like to be content in any situation, admittedly it has taken 9 months to acclimate to the latest upheaval. Through 26 years of RSD, there have been many levels of adjustment and this has been the hardest; but finally I could form and process my thoughts, seeing the reality that life goes on. I appreciate my family and friends who encourage, help and inspire me. They bless me richly.
I hope this post won’t sound “Pollyannaish”. I just believe that choosing to be positive in a negative circumstance is survival of the fittest.
God bless all RSD’ers, no matter their age or station in life…young or old, married or single. May our efforts at raising awareness truly expedite a cure for RSD.
　
　
　

A Secret Revealed

The recent issue of the RSDSA newsletter was jolting to me as I read about the secret Linda Lang has been keeping. I have been a huge fan of Linda ever since I read her book 8 years ago. Though we never met, she’s been a mentor of sorts through her book and all she imparts. For that reason, my heart went out to her that she was in a worsened state, as I feel akin to her somehow. Plus, reading the article about her secret was very convicting to me , as I have been keeping a secret of the same nature. You see, I have been homebound for years and bedbound, (loosely speaking), as my bed was the only place I could access with my physical limitations. So that space became my whole little world, which I talked about in my book in the blink of an eye. But just a few months ago, I developed severe leg ulcers and was confined to bed; lying down. About 6 weeks in, I started sitting up a few minutes each day. Rather, I should say tried sitting up each day. The reality is I sometimes made it and sometimes didn‘t but, either way, I would get injured time and time again resulting in more disabilities that ultimately prevented me from getting up at all; including muscle atrophy, which solidified things. So this was my secret …that I was now truly, totally bed bound. I could say honestly to my friends that I was writing a new book and I didn‘t want people to know what was in the second book before reading the first book. However, what I didn’t tell them was that I was embarrassed or ashamed to be so limited and so needy. I didn’t want to be pitied or shunned. But Linda’s article really did convict me that we’re a community and we need to be there for each other, with moral support, prayer support and all else. For myself, it convicted me too that instead of focusing on being bed bound, I need to focus on the fact that it took 26 years to get this way. With all that I’ve been through, I’m glad that my body lasted as long as it did and I’m glad that RSD is now being diagnosed earlier than before so that some people are now experiencing relief or improvement with early treatment. We all need to share our stories and respect each other’s situation with the understanding that, despite all the commonalities, RSD affects everyone differently. We need to pray for each other; sharing each other’s victories and mourning each other’s losses. And, above all else, we need to pray for a cure...that no more people, especially children, would have to endure such pain and debillitation.

A Song Completed

I'm so excited to share with you that the song I posted on here (back in April) has now been put to music by a very talented singer/songwriter, Lequita Hoffpauir, and then made into a video by Tara McCloskey Mandinec.  God has blessed this endeavor and to Him be the glory.

Greetings, everyone!  I hope those of you with RSD are having a low pain day.  There's something I've been meaning to write about for a long time but, not knowing how to express it, I had put it on the back burner, so to speak.  Though I'm still not sure how to express it, it is long overdue and I can't procrastinate anymore.  The subject is gratitude. In this world, we can be so consumed with problems or busyness that we lose sight of or take things for granted.  We sometimes miss the good because we're blinded by the bad.  And yet there's so much good all around us.  I am grateful for the medicine I take for pain relief; though it doesn't heal me, it makes things bearable.  I'm grateful for a caring, compassionate doctor and good caregivers.  And I'm thankful for YOU..the friends and family that help and support me; that share with me , laugh with me, cry with me, counsel me and just plain care.  God has blessed me with very special people and I want you all to know how much you're appreciated.
With love and hugs,
Jane  

A Song In The Making

My poem about RSD has just been put to music and will soon be recorded, God willing.

RSD

I’ve had this thing forever

this thing called RSD

No matter where or when,

it kept pursuing me

One place, then another,

it never would relent

Attacking all my body parts

until they all were spent

I fought my best to beat it

never giving in

The fiercest pain I’d ever known

was pushing hard to win

All the years I battled

to keep this thing at bay

But in the end, seemingly,

I didn’t have a say

My only consolation

and comfort through it all

Is knowing I was not alone,

my God was standing tall

Standing right beside me

and holding tight my hand

Whispering “I love you” 

and “I have got a plan”

A plan for good and not for bad

But you will have to trust

That this is meant to strengthen you

Although it seems unjust

Copyright Mary Jane Gonzales

3-25-11

The Question Of Touch

I have been asked four times in the last two weeks why I tell people "Don't touch me." and, yet, some people do/need to touch me.  "What is the differerence?" they ask.  "Why can those people (nurse, doctor, caregiver) touch you, but not others?"  Well...it's a good question to ask but a difficult one to answer.  I will try to explain it as best I can, bearing in mind I don't fully understand it either.  These are the things of which I am cognizant that would understandably make a difference. 

First of all, because of the risk, there would have to be a need.
For example:  the nurse may need to do wound care treatment.  So she would jokingly say "Assume the position."  Then I would position myself for her to treat my feet and legs. Next, I would brace myself by clinching the sheet tightly (with both hands) to bear the touch.   
Like driving down the road, if your car hits a big bump or a pothole which jolts your body, it could hurt or misalign you.  Whereas, if you knew it was up ahead, you would brace yourself for it and not be hurt.

Gone are the days of hugging people.  No matter how much I said "gentle", I would still get hurt.  So now I get "virtual hugs" from friends and kisses from family. 

I realize I am super frail and being gentle is critical for any touch.  Whether or not this is representative of other RSDers, I don't know.  I have often wondered about that and would welcome any and all responses, to get an assessment of that.

Blessings to all who suffer with this disease and blessings to those who desire to understand,

Jane

Here I Am Again

Here I am again, doing something I never thought I would do, as I'm totally clueless about blogs...but I was recently inspired by my 11 yr. old granddaughter who started one and I knew  if she could do it, so could I.

First of all, I need to state the name of our disease.  Previously, I used the initials RSDS/CRPS, which stands for Reflex Sympathetic Dystrophy Syndrome (newly named Chronic Regional Pain Syndrome).  Throughout the blog, I will generally refer to the disease as RSD.  Secondly, I need to state that I am not a clinician; just a long-time patient, speaking from experience. 

RSD is a neurological condition that effects nerves, joints and tissue.  Injuries travel to (and settle in) the nearest joint, nerve pain creates intense burning,and skin is tissue...which explains why it hurts for people to touch us.  The pain and symptoms we incur are way disproportionate to the actual injury and linger long after the injury should be healed.  The reason for this is that messages are not getting through between the nervous system and the brain; telling it how much to hurt and when to stop hurting.  It's basically a short circuit in the nervous system.  The analogy I often use is that of a car alarm.  When working properly, it is intended to alert you of a break-in but, when not working properly, it goes haywire, beeping incessantly from invalid causes such as someone just walking by.

While I'm trying to be explicit, I want to keep it simple and I don't want the blog to be repetitious of my book.  Hopefully, I can find the right balance.

So consider that kind of pain and factor in disbelief from people in your life.  Though the symptoms are bizarre and the pain is unbelievable, what's needed more than understanding is trust; trust that the patient wouldn't lie or exaggerate their symptoms.  Otherwise, you could end up with a strained relationship that would cause you both  to  suffer and cause the patient to be isolated.  On the flip side, where there's trust or unconditional love, the patient receives needed support and  your union with them is enhanced.

I sincerely hope this blog will be of help to you in some way or other. 

Blessings.

.Jane 

New to Blogging

Though new to the world of blogging, I am not new to the world of RSD/CRPS. I have had RSD for approximately 26 years and wasn't diagnosed until 8 years ago. Chiropractic, acupuncture and a brief attempt at PT were no match for this debillitating disease. By the time I was diagnosed, RSD had consumed my body and left me homebound. Like so many others, I know what it's like to be told repeatedly by doctors "I can't help you because I don't know what 's wrong.". Before the diagnosis, some people thought I was faking or exaggerating but that pretty much changed after the diagnosis, except that there will always be some who don't get it. I am blessed to have a good support system among family and friends and I pray the same for all RSD-ers. When I was first diagnosed I was helped tremendously by Linda Lang's book Living with RSDS and it is my hope that my book In the Blink of an Eye will likewise help others. Blessings to all RSD-ers. May you find relief, if not healing.