Back In The Saddle Again

After months of agonizing pain, I finally feel somewhat decent (by RSD standards, that is).  I know the regular pain and symptoms we deal with are bad enough but flares and added issues can put our pain levels over the top.  Fortunately, some med changes were helpful in bringing things under control.  Yet, I'm always amazed at the number of secondary issues that come with RSD, or the side effects from meds, or complications from a procedure.  So with all of that going on, it is comforting to have the prayers, wishes and overall support from each other.  I'm surely not glad to have RSD but I'm glad to know the compassion and kindness of so many in this community.

Sufficient Grace

"Sometimes God calms the storm...sometimes He lets the storm rage and calms His child."  I don't know who said that, but it's certainly true.  Blogging has been somewhat of a challenge for me in 2012 due to added health issues; sometimes because the pain is so bad and sometimes because you can't find the words to articulate the pros and cons, good and bad  peace and frustration of your life.  I stand in amazement that God's grace is sufficient, but all you RSD'ers out there know that doesn't equate to easy.  Even bearable is debatable.  See why it's hard to articulate.  You're grateful to wake up each day to an everlasting love and tender mercies but the pain seems so unbearable.  I have to keep reminding myself that everyone has something, be it a broken body or a broken heart.

I won't go into the added health issues because it would make the post too "heavy".  On the bright side, my poetry book is in production and my third book has been approved for publication, I'm still able to type and craft, I have friends, family and good care.  What more can I say?

You are all in my prayers.  I wish you abundant blessings and minimal pain.    .

Love,

Jane

A birthday post from an aged RSD'er...lol !

As of today, I am officially “OLD”!…and, strange as it seems, I am thrilled!  There’s no more dread of getting old, no more sweating the small stuff, not as many insecurities and a lot more comfort in your own skin.  I love the person I’ve become and appreciate the people who made the journey with me.
All too often, we perceive aging as a lessening when, in fact, it’s an increase.  It’s the sum of wisdom and knowledge you’ve acquired, it’s the heightened respect and the decreased rebellion.  It is sometimes a slower pace with added purpose. It is often a keener sense and clearer vision. It is, basically, expansion; which is more, not less.
What does this have to do with RSD, you ask!  As an RSD’er of 27 years, it’s proof that we CAN cope and survive all that illness throws at us.  We CAN live a full life albeit painful.  I am grateful to God for this stage of life and for all He’s brought me through.  I consider myself very blessed and all of you are part of the blessing.
Love,
Jane

Update

I can't believe it's been 6 weeks since I last posted.  A lot has happened since then; the main thing being that the grieving has stopped.  I can't explain that, because the situation is essentially still grievous.  Yet, somehow, I've come to terms with it and actually consider this post to be full of good news.  First of all, I have finished several projects that were important to me; some for awareness and some for posterity.  For those of you that don't yet know, I have made the blog book available free of charge in PDF form, as the paperback was too pricey for those of us with limited income.  Secondly, I am now getting (gentle) massage therapy through a means other than Medicare.  Obviously, I am thrilled about that.  It's beneficial in the sense that it keeps me limber, which has allowed me to maintain bed mobility.  Although I can't tell you the atrophy has stopped, I can tell you that some of it is noticably smaller.  Yes, I recognize that is a miracle and I hope it continues.  I hope you can appreciate the tightrope/balancing act. of seeing the bad, yet focusing on the good; praying and rejoicing with me.  May the stories we share and events we hold expedite public awareness, and may our prayers for each other have great effect.
Blessings,
Jane

Clarity

I know I've not been diligent with the blog in this new year and would like to explain why.  It isn't that I've lost interest or become lazy. Rather, I am at a critical place with the muscle atrophy and considered my last post a good place to end or pause the blog.  Awareness will always be a priority to me, which is why I keep telling my story.  We all have a story and, if we share it, others are helped by it and still others are educated by it.  Part of the reason I thought it was a good stopping point is it's hard to write with a FOCUS on the positive while you're grieving and, though I had future plans of making the blog into a book, I now feel a rush to complete so many things while I can still type.  Hence, the blog book, as it stands now, is not very lengthy...but nonetheless equipped to encourage or educate. It's a quick read and lightweight.  And I pray you'll consider buying  it for yourself or anyone you know who needs encouragement.  Likewise, the song or the first book.  If what we go through can help others, it is not in vain. Thank you for your support, and God bless!

Muscles and Medicare

As many of you know, I have been bed bound for 16 months now.  Initially, I was confined to bed with severe leg ulcers but, after 2 months, the muscles in my shoulder and hip atrophied…which then prevented me from getting up thereafter.  Since then, my doctor and I have repeatedly tried to get (soft tissue) massage therapy and mild PT to slow down ensuing debilitation. Despite trying different nursing agencies, the answer remained the same; Medicare will not pay for it unless it will enable me to walk.  That is their guideline; their “measurable goal”, and they need assurance of that outcome before covering the treatment/service.  As the patient, my objective/“measurable goal” is to maintain movement in bed and slow down further debilitation.

Please understand that for 26 years I pushed myself to keep going and retain mobility through pain and limitations.  It stands to reason I would continue that pursuit, albeit a lesser degree of mobility.  I know the ramifications of immobility and wanted to circumvent those ramifications.  Yet, without Medicare coverage or funds of my own, my hands were tied and the obvious has happened.  I am now experiencing widespread atrophy of my muscles and tissue.  I see my body wasting away before my very eyes.  I don’t know how to express my dismay at this outcome or at the flaws in the system.  Though I could well be called a crusader, I am not a revolutionary or activist.  I am not able to speak before the Senate.  I am, though, able to to raise awareness by telling my story in conjunction with everyone else’s story and hope that eventually change will come.

A Battle

To those of you who read this blog, I hope today’s post will speak to you somehow; that you could relate to it and feel less alone or less discouraged.    This post is not about anything profound, just perspective of life with chronic illness.  It’s not a journal or a how-to.  Neither is it a solution.  It’s just a personal study of where I am in the  RSD marathon.  
For those who have read my last two posts, you know the current challenge is depression.  What, for me, used to be vent, re-focus and keep busy….suddenly became a fight that had me “down for the count”.  Because my depression came from the loss of meds I had been on and because I don’t do well with meds, in general, I don’t want to experiment with new ones.  Being tenacious, I would rather continue my attempts at re-acclimating myself to the former drugs; little by little, til I can again tolerate them…or maybe, God forbid, go without.  For now, I have learned that this is a battle, and I have discovered some weapons of warfare.  I listen to music more now, I watch funnier movies, I’ve re-connected with poetry, I now belong to a support group and I pray even more than before.  In addition to all that, I cut my hair and resumed wearing lipstick…lol.  These things, no matter how small or silly, are helping.  I may not be where I want to be but I’m moving forward and that’s what counts.  I know that some people have major depression that requires medicine and more, and my heart goes out to you.  But the point I’m making is that this IS a battle and we need to be armed.

Love,

Jane