Health journey: when the mirror still doesn't match reality

I still don't see myself in the mirror as Panda down 63 lbs. 🐼 It's only when I come across pics like the one on the left that I see the huge difference (someone had this screencap from a CNN appearance from my blogging days during the 2008 presidential cycle on their blog).

I was on 3 types of insulin/injectibles for diabetes 3x/day (now I'm off all of them)! Ironically, it was also before rheumatoid arthritis struck (2012) and my L5-S1 herniation, surgery, re-herniation, and last year the disabling disc collapse. I'm thankful that I was not carrying the extra weight during this last physical/health disability that led to my termination from a 22 - year career at Duke University Press after my FMLA ran out.

But I didn't give up. I am very slowly and carefully working on supporting my back after 3 months of inactivity, first using a walker and then a cane. On the bad days when that nerve gets pressed, it's like an electrical shock and acute pain beyond belief leaving me practically bedridden; other days I can walk unassisted. I can't sit or stand for hours at a time as I did when running/writing the Blend, but I'm doing my best to reboot my life, remake and better myself.

My dilemma is I really can't consider fusion surgery for a variety of reasons, but the real kicker is the discs above and below the collapsed one are also degenerating, so fusion to them for L5-S1 will hasten their collapse, leading to additional fusion surgery. So my spine is a time bomb, but I can't give up, just forge ahead to make the most of what lies ahead.

What I am grateful for is your amazing kindness and support of my GoFundMe campaign (http://gofundme.com/pamscomeback) to get through this tough limbo period as bureaucracy leaves me twisting in the wind awaiting decisions from Duke and its disability carrier. The latest update is I should know by the first week in May what my options are to move on.

Chronic, disabling pain is an invisible disability that is life-altering, as many of you have shared in messages and emails to me. It can make life seem hopeless one day, and possible to rise above the next. Dealing with medical professionals to address pain management in a healthy way is its own challenge as well. But I'm here to say not to give up.

Love,
Panda 🐼 (Pam Spaulding)

Getting the boot after decades of service -- the Family Medical Leave Act's limitations

12/19/2015 just before the
disc collapse.

Just remember, even after putting in decades on the job...if you have a disability/chronic condition that requires ongoing medical treatment, surgery or both, those 12 weeks of time under the Family Medical and Leave Act (FMLA) are all you are legally entitled to under federal law. And then your employer can choose to let you go.

One can ask for reasonable accommodations under the Americans With Disabilities Act, such granting an extension of FMLA's job protection for the employee to complete recovery from surgery/rehab, etc.

However, even with physician recommendations provided, it is still the decision of the employer whether to accept that extension request. A company, if large enough, can sometimes accommodate under the ADA by attempting to match the person to another position (of equal level or lower) in the wider organization.

The employee often ends up on the short end of the stick.

Many people end up broke in situations like this, losing their homes, vehicles, etc. they lose the ability to make a living, get into the long disability process and medical bills destroy their lives. All because they got sick...and the limitations of FMLA as a safety net became a stark reality.

***

Anyway, with that general information dispensed with, I found out this week that major life changes are ahead for Panda. Priority 1: Panic avoidance - keeping a roof over your head. Priority 2: Handling disability. Priority 3: Figuring out a next chapter and where it takes you.

Dealing with a situation where I already have rheumatoid arthritis, and this acute recent problem - a reherniation of lumbar disc at L5-S1 that has now collapsed -- and L3 and L4 are not far behind --  it is a life altering state at the moment. It could remain acute and painful (sitting at a desk or standing to work for a full day is simply not tolerable). You know it's bad when the most you can do is lie in bed with a pillow between your knees, on your side, and tap out Facebook entries to pass the effing time, or compose emails on your cell phone to try to manage appointments and respond to questions.

Where making a ten-foot trip to the bathroom can be painful and a fall-risk at times. A far cry from walking 2 miles a day, losing 60+ lbs just a few months ago. I have managed to hold my weight loss steady. The "pain diet" works wonders for appetite suppression.

Taking time off for anterior fusion surgery exceeds FMLA time (too risky because of my RA and the frontal approach) and recuperation is long - 4-18 months. So that was out. Getting stabilized (or find out if I can recover enough to return to work) with PT, alternative therapies and medication could do the same - and has run out the FMLA clock.

Life has not treated me kindly so far in 2016. Hopefully something will change for the better. I may have to sell my house and move.

***

I have to give a shout-out of love to two really important friends in my life who have been right there for me during the past year of difficult times - Joe Sudbay, citizen journalist extraordinaire and partner in crime during my Pam's House Blend days; and my bestie and Grand Poobah, Jeff Salado, lead singer and manager of the tribute band Journey Revisited Faithfully Live.



Both of them are lifelines to sanity and support in times of such upheaval and doubt. I love my buds; it's not often to have not one, but two such beautiful souls have your back.

With Joe Sudbay, 2012 Netroots Nation

With Jeff Salado, October 2015; he gave me the Panda nickname.

Can't say much more than what you see here (and not taking questions, btw). Much is in flux.

***

Bonus - the response (click over for comments) when I posted this message on Facebook:

Just remember, even after putting in decades on the job...if you have a disability/chronic condition that requires...
Posted by Pam Spaulding on Friday, February 26, 2016

Related:
* Life changes -- RA drives me onto the professional off-ramp
* The fun of increasing joint damage and unsettling fatigue - "but you don't look sick"
* Made it - Celebrated 20 years at Duke University Press...still no regrets about shutting down the Blend

An Open Letter to GLAAD Regarding the 2016 Media Awards

When GLAAD launched its "Outstanding Blog" category five years ago, it was a cultural marker that grassroots activists whose tool was their digital soapbox and journalism could be recognized for the vital role they played in moving the civil rights ball forward. Most bloggers truly were/are independent journalists -- working for little or no revenue or sponsorship, operating in the belief that grassroots knowledge is power, and that mainstream and LGBT media were missing local stories and not connecting the dots to see the disconnected between metro and political LGBTs and life out in flyover country.

It was good to be nominated -- the Blend was one year, not a win but I felt honored nonetheless. I saw good work by my peers recognized. It's a field with a lot of work and little reward except making this world a little bit more informed by voices that are not normally part of the media as we know it. The grind to produce content day in and day out, particularly if you have another job to support your journalism, can take its toll. It's why I had to shutter PHB in 2013 after nearly a decade of intense production of commentary and first person journalism.

This year the category is scrapped, or if you listen to GLAAD's statement -- consolidated. Blogs were now "elevated" to compete with sponsored, large media organizations and publications with actual budgets and payrolls. The end result? No independent citizen journalists are among the nominees. Any thinking. politically and socially aware person would figure this would be the end result. This error in judgment needs to be corrected. I signed on to the open letter below to register my dissatisfaction with GLAAD's decision.

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An Open Letter to GLAAD Regarding the 2016 Media Awards

We, the undersigned, respectfully but strongly disagree with your decision to remove the category of ‘Outstanding Blog’ from the GLAAD Awards and with your rationalization behind this decision.

LGBT blogs and independent media play a crucial role in relaying information, providing new and diverse voices, and bringing attention to LGBT issues that have been overlooked and omitted by the mainstream media. Bloggers are the last truly independent voices of lived LGBT experience, and those who undertake this task typically do so without pay or recognition. They don’t grace the cover of magazines. They don’t get book deals. They don’t win Oscars. What they accomplish through their sacrifice of time and energy is the proper dissemination of information which serves to make our community stronger and better educated.

The ‘Outstanding Blog’ award bestowed by GLAAD was one of the few ways LGBT bloggers has been given their due. The idea that these voices will now have to compete with larger and more powerful news entities such as The New York Times, MSNBC and Buzzfeed is unfair and, frankly, humiliating. The elimination of the ‘Outstanding Blog’ category implies that unless one is a celebrity or affiliated with a publication with a high profile and finances to match, you are held without regard in the LGBT media landscape, or at least as GLAAD sees it.

It is sadly ironic that GLAAD, an organization which prides itself on lifting up positive LGBT portrayals, has rendered grassroots LGBT voices invisible and unworthy of recognition. While an initial statement from GLAAD explained that bloggers are still welcome to compete with national outlets in other journalism categories, a simple fact speaks for itself: among the 2016 award nominees, there is not a single blog (or community-based LGBT outlet, for that matter) to be found anywhere on the list. The crucial voice of first-person LGBT voices has simply disappeared from the GLAAD Awards. This is a troubling message to send to the general public, to up-and-coming LGBT writers, and to the LGBT community itself.

In the spirit of a community in which every voice is an asset in our march to full equality, we ask that the ‘Outstanding Blog’ category be fully reinstated immediately. Please conduct a nomination process at once so that this critical error might be rectified before your 2016 awards dinner. Also, announcing the winner of this category from the stage, unlike in year’s past, would also be a nice touch.

Sincerely,

Diane Anderson-Minshall
CEO of Retrograde Communications & Editor in Chief of Plus Magazine
Hivplusmag.com

Bil Browning
Founder of The Bilerico Project
Bilerico.com
2011, 2012 GLAAD Award Nominee

JD Davids
Managing Editor, TheBody.com

Zack Ford
LGBT Editor, ThinkProgress.org

Michael Hamar
Michael in Norfolk - Coming Out in Mid-Life
Michael-In-Norfolk.blogspot.com

Rebecca Juro
Columnist, South Florida Gay News

Mark S. King
MyFabulousDisease.com
2015 GLAAD Award Nominee

Will Kohler
Back2Stonewall.com

Alvin McEwen
Holy Bullies and Headless Monsters
holybulliesandheadlessmonsters.blogspot.com
2014, 2015 GLAAD Award Nominee

Noah Michelson
HuffPost Queer Voices
Huffingtonpost.com/queer-voices

Michael Rogers
Netroots Connect
lgbtnetrootsconnect.org

Dana Rudolph
Mombian.com
2012 GLAAD Media Award Winner

Michelangelo Signorile
Sirius XM PROGRESS
Signorile.com

Pam Spaulding
Pam’s House Blend
PamSpaulding.net

Joe Sudbay
Longtime Blogger

Berlin Sylvestre
Editor, OUT FRONT Magazine

Brynn Tannehill
Independent Writer

Daniel Villarreal
Editor in Chief, Unicorn Booty
UnicornBooty.com

Ashton P. Woods
Strength in Numbers
ashtonpwoods.strengthinnumbershouston.com

Sarah Toce
Founder/Publisher, The Seattle Lesbian
theseattlelesbian.com

Dana Beyer
Weekly Columnist
Huffpost Queer Voices

Is 'Winds of March' Steve Perry's best live performance?

This article in Society of Rock "We Found Steve Perry's Greatest Performance Ever And It Will Stop Your Heart," argues that the 1978 Chicago PBS Soundstage live Winds of March is Steve Perry's best live performance. Geez, I can't single out any one performance in this artist's body of work as "greatest." From the article:

"Although it is bold to claim which of Steve Perry’s amazing live performances are the best, we would have to argue that his insanely pristine vocals and range in the 1978 Chicago “Winds Of March” is it.

...From Journey’s fourth album, Infinity, “Winds Of March” proves to be one of the sweetest soft rock songs in existence about a parent experiencing the heart wrenching loss of a child. "

Although there are hundreds of performances to choose from, this happens to be our favorite and most touching vision of the great Steve Perry.

I classify Steve Perry in three distinct vocal periods/quality: this is the pristine countertenor period, the 80s arena rock tenor heyday, and the very tour-damaged, dirt-in-the-vox, but talented latter period in late 80s to 1996. I love each period because he learned to adapt as his voice changed, but what remained constant is his ear for melody, tonal excellence, convincing emotion, judicious use of melisma, a base rooted in Sam Cooke, and that vibrato.

I agree that this is an incredible example of his range, power, clarity, and emotive qualities. It almost makes you weep listening to the disciplined note production, the controlled vibrato, the ease with which he delivers an extremely difficult song. It is beautiful to behold.



This song is a Mount Everest for any tribute singer. It's so way up there, unearthly, practically unachievable. Even Perry stopped performing it after it was effectively replaced by Mother/Father as the vocal show stopper in 1981.

People need to remember that most of the recorded official (and unofficial on YouTube and boots) show SP at his best. As he is a human being, his gift wasn't "on" every night. You can find some YouTubes where he's dodging notes, doing brilliant substitutions but staying faithful to the song's intent and emotion. The hallmark of a great vocalist is one who learns how to work with the tools in his vocal toolbox on any given night on the fly.

That's where I have to give props to tribute singers like my bud (and colleague) Jeff Salado, of Journey Revisited. All of these singers attempt to emulate Steve Perry at his BEST consistently night after night in front of casual fans of Journey to die-hards like myself. Keeping the Perry era of live performance authentic is a tall order indeed. The demand is there to hear these great compositions performed live with fidelity to original sound.

Check out discussion on this topic in two Facebook groups:

• " THE " JOURNEY JUNKIES- JJ's
• Steve Perry The Voice, and everything else,LOL

Panda (Pam Spaulding)
Digital Presence - Team JR
http://www.journeyrevisited.com
http://www.facebook.com/JourneyRevisited/