Thursday, June 27, 2013

Locs away!

There it goes...about 5 inches of my hair. Losing some anyway due to taking MTX med for the RA, so I decided to even things out a bit. Life goes on.



I started my locs in all the way back in 2000, and I have cut them several times over the years. Kind of sad to see some just drop out, landing on the shower floor.

Wednesday, June 26, 2013

Rheum visit: adding Enbrel (w/MTX) and maybe a steroid for my NY trip

Went to the rheumatolgist today for a follow up; so I was sitting in the doctor's office, looking at updates on the SCOTUS  DOMA and Prop 8 rulings while I waited. Mixed news, mostly very positive; it will be delayed gratification and legal gray areas for those of us in states with marriage amendments.

Sort of like the news today on the health front. That's nothing out of the ordinary, though.

My labs this month didn't show anything significant re: my liver, so I'm going to continue taking MTX.

Because I'm having new difficulties with pain in my ankles and knees (I'm now wearing braces), as well as my elbows, she thinks we should try adding Enbrel back into the mix. I was on this last fall before I needed back surgery, so we decided to try MTX, since it doesn't require a weekly injection. I already take 3-5 needles a day so it's nice to avoid additional sticks if I can.

Since MTX is not only making me sick for 1.5 days a week, but is giving limited relief, adding Enbrel is not uncommon. For some reason the findings are that together they are more effective than alone. This Friday I'll dose both and see how sick I get on Saturday.

***

Prednisone or not?

The other development is that next Friday we go to NYC for my birthday weekend -- and my Brooklyn Bridge walk for my 50th. I don't want to be sick in my hotel room, writhing in my bed all day Saturday, so I'm skipping the MTX and Enbrel for a week.

The rheum said I could do this, but since I'll be more active than usual, I need to be careful about fatigue and increased joint pain. To mitigate this, she's prescribed my some prednisone (steroids), to take for a week. She also said to pack Zantac and Aleve to deal with GI issues and the latter to assist in pain control.

I detest steroids -- they mess with your blood sugar control, make you gain weight and retain water, and you're hungry and thirsty all the time.

So it's my choice -- I can skip the steroids, roll the dice and risk the walking and being off schedule (and dealing with ramifications of flying and barometric pressure changes on pain) debilitating me on the trip. Or take the steroids and deal with those side effects and have the pain better managed.

I am not sure what to do yet. I'm also packing some compression socks to deal with the edema in my lower legs from flying and the extra walking. Turns out she said if I take the steroids my legs may swell even more. Argh.

It almost makes you not want to deal with travel and being off schedule. But this is my life now. Every action can have dire consequences - pay now or pay later.

And I will not be able to re-dose my MTX and Enbrel until a full week later. She wanted met to dose as soon as I returned home (Wed), but I can't -- I have to be able to go to work on Friday and can't be out sick dealing with med side effects. That's the whole reason I take it on Fridays, so as not to interfere with my ability to work.

Sigh. I get tired thinking about this. I really don't want to take the prednisone.

We're at a very strange moment in civil rights history, thanks to SCOTUS (updated)

Thanks to SCOTUS over the last two days:

1) If you're a same-sex couple and live in CA, you can marry.

2) If you live in NC (or any other state with a "marriage protection amendment") and were legally married elsewhere (in my case, Canada), your marriage is not recognized in terms of filing joint state taxes (or anything else), I guess I can file jointly fed taxes and see what happens. (I asked this question on FB and below you'll see a legal response).

3) We can still be fired for being LGBT in most states, including NC.

What today means is that there will be beaucoup "full faith and credit" clause legal challenges flooding those state courts.

And, by the way, if you're a person of color, your right to vote is now twisting in the wind.

***

The above was posted as a status update on my Facebook wall and it generated a lot of good legal information, much of it from the fabulous Chris Stoll, Senior Staff Attorney at the National Center for Lesbian Rights, which has a great page with fact sheets up as well. One is: After DOMA: What it Means for You—The Supreme Court Ruling on the Defense of Marriage.

The Supreme Court victory on June 26, 2013 in United States v. Windsor striking down the discriminatory federal Defense of Marriage Act (DOMA) affirms that all loving and committed couples who are married deserve equal legal respect and treatment from the federal government. The demise of DOMA marks a turning point in how the United States government treats the relationships of married same-sex couples for federal programs that are linked to being married. At the same time, a turning point is part of a longer journey, not the end of the road. There is much work ahead before same-sex couples living across the nation can enjoy all the same protections as their different-sex counterparts.
Some of Chris's comments:

Chris: Married couples who live in states that do not respect their marriage should be eligible for some but not all federal benefits.

In states where a same-sex couple has a legal marriage but reside in a state with a marriage amendment, the answer is some of those 1000+ benefits may be available to them, but it depends on how the Obama Administration will implement new policies in each department and agency. Then I asked: There is a bit of confusion about recognition of legal international marriages vs USA marriages. Does the law treat these differently?

Chris: For the most part, there is no difference between international marriages and domestic marriages. Federal programs either determine marital status according to whether the state you live in recognizes your marriage (in which case you are out of luck if you live in NC, regardless of where you got married) or whether the marriage was valid in the state or country in which it was entered into (in which case you get benefits, no matter whether you got married in Canada, DC, NY, or anywhere else it is legal). But it depends on the rules of the specific federal benefit or program.

***

Summing it up -- Winners and Losers

Winners:


  • California same-sex couples
  • Edie Windsor, thank god. Her reaction:


Everyone at the apartment of Roberta Kaplan, the lawyer who argued Edith Windsor’s successful challenge to the Defense of Marriage Act, exploded in screams and sobs when the ruling came down. Kaplan called her mother and said, “Total victory, Mom: it couldn’t be better.” Windsor said, “I wanna go to Stonewall right now!” Then she called a friend and said, “Please get married right away!”
  • Same-sex married couples in states where there is marriage equality
  • Binational couples -- now the foreign partner will be able to apply for a green card with his/her spouse as a sponsor.
Semi-winners:

  • Same-sex couples in states with marriage amendments: they will receive some fed benefits (to be determined), but no legal recognition inside their home state.
Losers:
  • The religious right, haters, bible beaters and the homo-obsessed. They are already cracking up.
Bryan Fischer of the American Family Association believes the U.S. Supreme Court is 'doing to us what the Nazis did to the Jews' (via Good As You):



Via Little Green Footballs, Texas dumb-@ss Louis Gohmert is apoplectic, concluding that the ruling dooms civilization:

"In today’s episode, Texas wingnut par excellence Louie Gohmert says the Supreme Court’s DOMA decision is “against the laws of nature and nature’s God,” and now America’s really in for it. We’re talkin’ total collapse of civilization, people. It’s bad."

And Bam Bam Barber, you have to read his Twitter feed to believe it. He's foaming at the mouth.





There's a great essay up at Back2Stonewall by Sly Merritt that really sums up my feelings about the day:
"A part of me held back and tried to reconcile the tension I still felt with the historic moment in LGBT history. And I knew after a few moments what it was. “We are not finished yet. We haven’t even begun to fight.” Maybe that’s why my mood became muted. Because the Supreme Court did not rule completely in our favor as I’d hoped, even with how unlikely that outcome. It made me feel like an outsider because I was holding back on celebrating with passion so many of my friends were exuding.

And then I was angry. Angry at myself because despite the fact that it was not a sweeping victory it was all the same a monumental step forward so I felt this emotion was taking away from the joyous occasion that so many in this community are celebrating. It was giving me a migraine because that phrase kept coming to mind. So I laid down to calm my thoughts and asked why I felt this way. But my feelings were grounded in truth.
Is it because I know that in the remaining 37 states in this country, including my home state of Tennessee has a very long, hard battle ahead now that it is truly up to the states to decide the rights of millions of Americans. That the couples living here in the rural south that have worked their entire lives and entered long-term relationships for decades still do not have those federal rights that the New Colony states now have. Can still be denied the legal right to call the love of their life their husband or wife."

Barnes & Noble kills the Nook

I am not surprised by this news, but it is a sign of the times as traditional publishers and retail distribution outlets are having a tough time adapting to the reading proclivities of the public. B&N jumped into this game way too late with its device, the Nook; traditional tablets (iPad and Android) could do more, better and faster, and direct competitor Amazon was way ahead out of the gate with the Kindle.
The top U.S. bookstore chain reported another quarter of dismal results on Tuesday, led by a 34 percent drop in sales of Nook devices and e-books business, and said it expects sales to continue to decline this fiscal year at its bookstores. Shares were down 17.5 percent to $15.53 in afternoon trading.
Barnes & Noble will still make and design black-and-white readers like the Nook Simple Touch, which it says are more geared to serious readers, who are its customers, than to tablets. But it is looking for a partner to make its Nooks, acknowledging that competition is too fierce to fight alone. 
In the fiscal year ended April 27, Barnes & Noble lost $475 million on the Nook business and it repeatedly had to slash prices on the Nook tablets and accept returns from retailers unable to sell the devices. 
E-books now account for about 20 percent of book sales, according to the Association of American Publishers. By Barnes & Noble's estimates, it has a 27 percent share of the U.S. e-books market.
But B&N's problems aren't just in the digital world. Sliding sales at its stores make you wonder if there is ever going to be an uptick that suggests this business model will survive. I mean, I used to frequent B&N fairly often -- 10 years ago. Now if I happen to go by, it is to window-shop; look at the physical books or magazines. Then I go home and order at Amazon. I'm more likely to buy if I go to my local independent bookstore. I'm obviously not the only one.
The picture was also bleak for Barnes & Noble's retail business, consisting of its 675 bookstores and accounting for two-thirds of sales. Sales at stores open at least 15 months fell 8.8 percent last quarter and Barnes & Noble expects retail sales to be down by a high single digit percentage in its new fiscal year.

Monday, June 24, 2013

And then there's this kind of "fan"...

Look! I have a fan! Not that I've heard of this site...it has at least 2 readers, since there are 2 comments, lol. I am actually surprised that more freaks on the right haven't spewed stuff. I was looking to post the "best of".



This dude is even more marginal than The Peter. Where's my pal Pastor Billy Ball...?

Sunday, June 23, 2013

Thank you, Melissa Harris-Perry, for the wonderful Pam's House Blend send-off

Just got out of the shower just in time to catch the MHP PHB send-off! Some screen caps and pix that were shown...Melissa Harris-Perry was way too kind. Thank you. The video:


Visit NBCNews.com for breaking news, world news, and news about the economy
And what's not to love -- she mentioned in a shout-out my much-loved (often-derided) fave band Journey. From the rough MSNBC transcript:
“For this week’s footnote i’m bidding a favorite tonight farewell to my favorite coffee shop , pam’s house blend . pam spaulding has decided to close the blog pam ‘s house blend . Launched in 2004, PHB is one of the first online opinion sources that I read on a daily basis. Pam is based in durham, North Carolina. As an African-American lesbian living in the south during the gay baiting re-election campaign of George W. Bush in 2004, she just needed a place to vent, but what started out as a personal online journal of frustration became one of the most innovative and inclusive spaces in the digital world.
Pam and her fellow bloggers reported the news and commented on the maddening developments of national politics, but they always did so through their own distinctive lens. pam and her co-bloggers withstood the identity of race and identity reminding us that gay is not just an urban experience. of course there is autumn sandeen, who is the first transgender blogger on a major site. pam and her house blend won many awards and in 2008 she was only one of six african-american bloggers credentialed to cover the Democratic National Convention. early this week she announced she will no longer produce pam ‘s house blend; she is suffering from rheumatoid arthritis , she no longer has the stamina to blog during all the hours that would be reserved for sleeping. we asked pam what she wants to be the legacy of the house blend and she said, i really do wish that we could get more lgbt people of color blogging about politics and their rights. maybe it’s the gliend of politi politics. maybe it’s that politics is depressing, i’m not sure, but it’s so necessary. and voices from the south are necessary. pam , you are a true citizen journalist . 
I will continue to check out your personal posts about your favorite band, Journey, but i will miss your daily House Blend.  Rest and take care of yourself, you certainly have earned it. But if you are out there and you have a voice that needs to be heard and a perspective that should be shared, maybe now is the time to take up the banner that Pam has held aloft for so long. ”
Reaction to the video on Facebook.
For newcomers to the Blend, I've collected a bit of history on my personal blog.

Gimpy but will be there - narrating Triangle Gay Men's Chorus event today at 3PM

Whew. That was one rotten Saturday lost to med side effects. MTX dose had me in bed with headache, nausea and chills. Better this AM, just still really tired. Will have to record MHP re: PHB today. Need to rest up b/c I am scheduled to narrate a concert program later today see below.

It's sad that weekends are now largely deep-sixed in order for me to function at all during the week. Every RA drug I've tried has at least 1-2 days where I am sick, with 5 or so decent days where my pain is not gone, just down to about a 4 out of 10 (10 being unbearable pain).

Those TV commercials extolling biologic RA meds leave the whole sick time thing out. But at least they do mention underneath the soaring music that cancer, stomach rupture, and death by severe infections are potential side effects, lol.



I will have my knee braces on and will head over to Pilgrim United Church Of Christ here in Durham at 3PM to serve as the narrator at the performance of the Triangle Gay Men's Chorus -- "When I Knew: A Musical Presentation of Our Journeys of Self-Realization." More information on Facebook.



TRIANGLE GAY MEN’S CHORUS

PRESENTS:
When I Knew
A Musical Presentation of our Journeys
SUGGESTED DONATIONS
$15.00 adults - $10.00 students/children
Save $5.00 on each adult ticket by purchasing in advance on-line at www.tgmchorus.org

Sunday, June 23rd 3pm
PILGRIM UNITED CHURCH OF CHRIST
3011 Academy Rd. Durham, NC
Narration by: Pam Spaulding
Editor and Publisher, Pam's House Blend

Friday, June 21, 2013

PHB tribute on MHP on Sunday (hopefully)!

Wow - now this is really a "we're not worthy" moment. Just got a call from the Melissa Harris-Perry show on MSNBC. She is going to do a feature on the close of Pam's House Blend at the end of the show on Sunday. :-)

(Of course with my luck some breaking news will explode and it will get 86ed. LOLOLOL.)

In case you're wondering, I won't be on-air. I will be in the throes of methotrexate side effects Sat and early Sunday AM. The video should be up by noon on Sunday, according to the producer.

Hitting a milestone on the day job...

I made it! Well, almost made it; limping my way to the 20 year mark (I think it is actually in late September) at the day job that actually puts a roof over my head, something the Blend -- my second job and labor of love -- could not.

The letter is to inform me that I need to go pick out an award for myself. Lots of jewelry selections (nope), sleeping bag, watches/clocks, power screwdriver, pens, pots and pans, etc. I think I'll pick a docking station for my phone.

LOLZ. I guess The Peter finally heard the news...

Peter LaBarbera, long-time "friend" of the Blend (just Google him), gives this appropriate send-off in the wake of the news that dangerous “pray-away-the-gay” therapy organization Exodus International is going to bite the dust.


This professional anti-LGBT activist, based in Illinois, perpetually called PHB "anti-Christian," which is ludicrous, because, as he well knows, not all Christians believe that being gay is sinful, or should be discriminated against.

He and I go way back, almost to the beginning of PHB. His annoyance with me reached its peak when he and his fellow anti-gay-for-pay activist Matt Barber decided to try to get me fired from my day job because of my personal political views.

During the Amendment One campaign (the "marriage protection" amendment ballot initiative here in NC that passed in 2012), he and local homophobe Rev. Patrick Wooden had this exchange about me on Peter's show -- where they tell me to find Jesus – and a man to breed with to ‘rock my world’:
Peter LaBarbera: According to the left you are a rent-a-pastor, I’m referring to a comment made by Pam Spaulding, a lesbian activist in your state. She does not have kind words for you Patrick. She calls you a bigot, and when she found out that you were appearing at our press conference and said you were among the so-called rent-a-pastors. So she was echoing the same sort of stuff we’ve caught by the SPLC [Southern Poverty Law Center], which to reiterate and remind people that they said the white organizers…which I suppose would be Peter LaBarbera and Matt Barber. We brought along a set of black pastors. So Pam, who happens to be black, she also called you a rent-a-pastor. So how do you feel about that?
Patrick Wooden: Well, first of all, I love Pam, and one of these days I hope to invite Pam Spaulding maybe to lunch, and we can sit down and talk, I have never had the privilege of meeting her. I learned that we were at an event one time together and she did not make herself known [news to me; what event is he talking about?] and of course she knew, if my information is correct, she’s aware of who I am and I did not know her. I love her and I am praying for her, and I wouldn’t dare rail insults for insults or slurs for slurs.
I will say that Christ died for Pam, and Jesus will save her and deliver her from sin and that I have nothing but love for her and look forward to an opportunity to sit down and look her in the eye and to talk to her. Now as for the comment that I am a rent-a-pastor (laughs)…listen, Peter, I’ve been called much worse, and you know, my position is this: I don’t mind being rented for the cause of Christ. I don’t mind being rented for God’s Truth, I don’t mind being used for God’s Truth…as a matter of fact I want to thank her for calling me a rent-a-pastor. And I’ll say to the Lord – you can rent me anytime you want. I don’t know why he would since he owns me, but I will do for whatever cause he would want me to be a part of …here I am Lord, I’m like Isaiah, [blah, blah, blah] as long as I am representing God’s Truth. 
Peter, it’s really not about her; we’re just vessels to be used by the Lord. It is the cause…it is the truth of God that we represent that is so important. So if the Pam Spauldings of this world, I wouldn’t get into a shouting match with her, I wouldn’t visit her web site, or her Facebook or whatever and rail insult for insult… 
Pam needs Jesus, when Pam meets the Lord that yearning for a member of the same sex will change…she’d probably make a fantastic mother [Um, no], and would enjoy having a husband who was born male – no Chaz Bono business – born male – and meet her man, and rock her world, in the name of the Lord.”
Peter: You’re right about the hatred, you expect that the hatred would come – this is a perversion movement.

Here's the blast from the past...



Also see:
* This Is What Professional Homophobes Do When It’s ‘Game Over Man’

Thursday, June 20, 2013

Trying out knee braces as RA hits those joints

Today in RA fashion! I'm trying out knee braces because the knee joints have been on fire of late (the left is worse), and walking has become painful. So to get back out walking for exercise -- and to make that Brooklyn Bridge walk in a couple of weeks for my 50th birthday I need the additional support there.

The black soft brace (Cho-Pat Dual Action Knee Strap is pretty comfortable and gives good support. But it was hard to be comfortable most of the day in it because it got hot from that neoprene. Also, when I took it off at the end of the day, my leg was pretty sore from the compression. I think this would do well for high-impact/short term wear, like for walks.

The smaller brace, the OTC KNEED-IT Therapeutic Knee Guard is more comfortable and cooler for all day use. It's fairly early in the day, and I don't know if it will provide as much support around the patella and tendons. Right now this one seems the winner for daily support.

The shoe of the day in Photo 1 on the left is Easy Spirit "Riptide." The second one is Easy Spirit "Poinsettia."

Wednesday, June 19, 2013

(Unexpected) reaction to the announcement about the end of Pam's House Blend...and a chat with Michelangelo Signorile

On Sunday I thought I could get away with announcing that I was shutting down Pam's House Blend (closing the coffeehouse on July 1, its 9th birthday) with little fanfare, as that's a pretty dead day when people are out and about, and it was also Father's Day.

Boy, was I wrong. There was a massive outburst of reaction on Facebook and Twitter and the Internet (see at the bottom of the post). It was overwhelming -- and kind of weird, like being at your own funeral without the pine box/urn. I say "unexpected" in the headline because I truly didn't think it would matter this much. I still have a hard time placing the work I do on the blog in the context of things like "success" or "popularity" because the latter is hard to gauge sitting here where, aside from a few comments on the blog or social media, just how far and wide your words reach, since most people lurk, not comment. The former is hard to define in today's new media world -- success can come in awards and honors (I do have a number of those), professional opportunities (those never materialized in any way that I could consider quitting my day job), or financial (that's laughable). But apparently the Blend is well-loved by enough people that they kindly shared their thoughts on Sunday in numbers that surprised me.

The blog will be closed, but I'll still be active on social media (FB, Twitter, etc.); I'm just not up to long-form blogging/reporting anymore. If I am not able to do it to the standards I have kept up over the years, it's time to let it go. I know it's time, because the decision was easy; I know my physical limitations now and I'm not in denial about what I can accomplish in a given day. It takes all of the energy I can muster just to be able to hold down my 75% day job.

***

On Tuesday I went on the Michelangelo Signorile Show on Sirius XM Satellite Radio. I am honored to call Mike -- a legendary LGBT activist and journalist -- a dear friend and he's been a big booster of the Blend over the years. He also recently co-authored with me a chapter about the Righthaven copyright scourge and its impact on media authorship in a book, Copyright Shakedown: The Rise and Fall of Righthaven.

Anyway, we chatted for about 15 minutes about closing the coffeehouse, and discussed the state of blogging back in 2004, and how it has changed over the years, particularly with the recent high impact of social media. You can read Mike's write up on Huffington Post, where he is the editor of Gay Voices. A snippet:

Spaulding talked about starting the blog in 2004 and never imagining it would become the award-winning, highly-noted must-read site that often garnered media attention as well a notice from mainstream gay groups Spaulding sometimes criticized, like the Human Rights Campaign.

“There were not many blogs out there [9 years ago],” she said. I wasn’t blogging to an audience. I was just blogging about my frustrations about the virulently antigay campaign that George Bush was running. For the first year to year-and-a-half the most I had in terms of readership was 300 people. I thought that was enormous and that I’d never surpass it.”

Looking back, Spaulding is especially proud of the diverse voices she brought to the PamsHouseBlend and the political blogopshere, readers and writers who’d often begun posting in the diaries on the site and rose to become regular bloggers, including the prominent transgender activist and blogger Autumn Sandeen.

“I’m really proud of that,” Spaulding said, “because that was a voice that was missing at the time in the blogosphere. There really were not any transgender bloggers at the time among the A-list blogs. I think that kind of exposure led to more discussion about transgender issues.”
Here's the audio:



I couldn't capture all of the reactions on FB and Twitter, but thanks to Storify, here's a good number of them from good friends, readers and fans (sorry, no reaction so far from professional anti-gays Porno Pete or Bam Bam Barber yet, lol).



Wednesday, June 12, 2013

MTX chemical blues dilemma -- feeling the mood fall WAY down on the bad day

I feel like a science project in motion.

Even though the Methotrexate (MTX) has overall started working well regarding RA pain, there's a real dilemma. This week I was only sick for one day (Sunday) and was good to go on Monday with only a pain level of 4-ish, which for me is baseline. That's six good days and one bad day. Probably acceptable, but that one bad day is unreal.

Fever, chills, dead-to-rights fatigue. But the kicker is what it does to my mood. I get blue, way down, "life isn't worth living" blue. It's completely out of sorts for me because I'm not prone to falling that far down the mood scale. Of course my rational mind knows this state is temporary, but I feel incapable of controlling this feeling of despair, and the accompanying crabbiness and doom. Poor Kate has to deal with this.

Then it's gone by the next day (!), along with the other bad side effects, but whoa, I am a different person on that "down day." I know I'm not nuts, and so I looked it up -- mood swings on methotrexate are not uncommon, some bad enough (and longer than the down day) to require anti-depressants, or so bad they have to get off of the drug.
Methotrexate can also cause mood changes. Depression and/or anxiety caused by methotrexate therapy can be serious.
Dilemma

At least for me, after trying all sorts of other meds that give me fewer days of relief and more bad days of side effects, I'm willing to ride out MTX for a while longer, but I definitely need to be cautious about that down day. I feel like I probably need to stay in bed and just let the tidal wave of side effects and bad thoughts hit, and write off Sundays all together.

Not a great trade off, and certainly kind of scary. But I have to see if it will pass. The number of days that I am sick from MTX is down to one after starting out at 3. I'm only about 8 weeks into trying this drug. I have to check in with my docs by the end of the month. I've alerted them about the mood side effect and that I am monitoring it.

This is the price those suffering with RA have to pay as they go on the merry-go-round of trying to find the treatment that works best and destroys quality of your life the least. The motivation is to stave off the 24/7/365 crappy quality of life you have if you don't treat this degenerative disease at all.

Payback for missing restorative sleep

Rough sleep night and now woke up with searing joint pain. I always pay for interrupted sleep when it comes to RA. MTX can't even overcome that.

Can't miss work though; I have a project meeting to chair and a lot of work to do, so I'm dragging myself in, albeit a bit late. Not enough time to go back to sleep.

I need to walk/limp around and then rest my joints and then to get ready. It usually takes 60-90 minutes to "loosen up" every AM anyway.


Monday, June 10, 2013

Some good health news...finally!

High-five to me today! At endo appt and my A1C is a record low 6.3.

That means I've maintained tight blood glucose control over the last few months despite battling pretty miserable chronic pain. Finally some good health news!

Sunday, June 9, 2013

There's nothing like a 50 lb pit bull hot water bottle

MTX chills and stomach pain just kicked in with a vengeance. Took my dose late Sat afternoon after a full meal, hoping I could sleep through the worst of it. I am usually sick for at least 24 hours after taking the weekly 6 pills. Had to get under a fleece.

Casey joined me on the sofa and got into the upside-down, draped over my lap position (known as the "pit-po" here). Having the 50 lb "pit bull hot water bottle" on me for a few helped a lot.

Now maybe I can get some sleep.

Saturday, June 8, 2013

When you have neuropathy-damaged feet, good (cute) shoes are hard to find.

The stereotype is that lesbians wear "comfortable" shoes, as in unfashionable, or maybe work boots, I have no idea.

Anyway, this lesbian has serious neuropathy in both feet. I've had insulin-dependent diabetes for 30 years, and thankfully my eyes and kidneys -- usual targets of long-term damage -- are fine, unfortunately the feet are what took the damage. My blood sugars have been in good control, but it's hard not to have some long-term effects having diabetes for this long. BTW, it runs on both sides of my family -- both of my parents had adult-onset but were not obese. My brother is fine; I seemed to be the one to get all of the horrid metabolic and immune disorders passed down. Even my RA, according to my rheumatologist, was spawned through the genes; my mom had sarcoidosis, which is in the same auto-immune family.

Anyway, it's hard to describe what neuropathic pain feels like -- it's simultaneously numbness paired with extreme sensitivity at times to the touch, such as feeling like you're walking on hot coals, or someone is stabbing you with little knives on the soles of your feet.  The duality of this is both frustrating and annoying because it can ramp up at any time. The worst-case scenario is an attack of it at night -- I've had pain so bad that even having the sheet touch my feet under the covers was excruciating.

On the other hand, my feet are nearly completely numb to hot or cold, which can be dangerous. Burning hot water feels only warm on them; ice barely registers as cold. The numb aspect also makes it easy to slip in the shower, since my feet don't have the correct sensation to grip the wet floor well. I have to have bath mats all over the floor to make it to my slippers.

One of the few topical things that help is capsaicin, derived from hot peppers. Mostly this is used by folks with osteoarthritis. In treating neuropathy, the heat sensation generated by it cancels out/breaks up the neuropathic signals causing the pain. Kate tried using it on a sore muscle and she couldn't bear the burning sensation; I barely feel anything warm on my feet, but after about a half-hour, some of the worst burning subsides and I'm able to finally sleep.

But back to shoes...

Almost all my old shoes -- nice dress shoes, sandals -- had to be tossed out over the last couple of years because they either 1) hurt my feet by causing neuro-pain, or 2) didn't provide enough shock absorption to prevent knee and hip pain that I have from RA. What's left to wear? Well, lots of styles that look like Grandma Shoes. At this point, the only brand I trust to be comfortable are Easy Spirit's Athletic family. At least they come in all sorts of cool colors and styles.

I took a risk on one shoe that looked kind of cool -- the Naturalizer BZees Mary Jane (right). While they aren't dress shoes or sneakers, they fall into middle ground for me. I'll wear these to work or out on the weekend. I've learned that comfort comes before style at this point. It's really not a choice.

One of the brands that up until this about a year ago that I could reliably trust were Jambus and J-41s. I wore one pair last week and boy did I pay for it.  They seemed comfy enough -- they have memory foam insoles -- but the next day my left knee and hip hurt so bad that I was limping for two days. I had to fall back on my trusty Easy Spirit Mary Janes to get enough support and shock absorption. I was crestfallen. I love those J-41s. I wanted to make a bargain with myself that I can still wear them in some limited way...oy.

Thursday, June 6, 2013

From the 27 Views of Durham event

I read from my contribution to the tome 27 Views of Durham: The Bull City in Prose & Poetry tonight at Regulator Bookshop on 9th Street in Durham. My selection was "Boom and Bust" (the rise and fall of South Square Mall and how it represented change and growth in the Bull City).

Had a great time and turnout was good despite some rotten weather.

From 27 Views of Durham reading, 6/6/2013

Here I am with 27 Views contributors Steven Schewel (who wrote the stellar introduction), Jim Wise, John Valentine and editor of the book, Eno Publisher's Elizabeth Woodman.

From 27 Views of Durham reading, 6/6/2013

Wednesday, June 5, 2013

Sigh...hopeless Journey fan here...Steve Perry sighting (UPDATED)

Update (6/6): This week Mr. Perry posted a rare personal message on his fan site about the facial scar in the pic with Martha Quinn -- and something even more personal about his life over the last year. More at the end of the post.


If you're a Journey fan (and I know there are far too many of them in the closet about it), it can't get much better than this blast-from-the-past reunion of two icons, frontman Steve Perry and MTV VJ Martha Quinn. SP sightings are pretty rare.

The former lead singer/songwriter hasn't been with the band since 1996, and he's much beloved. He probably knows his fans would love to see him record and release the 50+ tunes he says he has in the can.


On my bucket list -- being able to have lunch with Mr. Perry. How that could even happen, I don't know (anyone with connections out there???), but it would make me a very a happy woman. Love, love his voice; have so many questions to ask about his compositions and positive experiences singing and songwriting.

One of my favorites, from a collaborative gig that was never released (but bootlegs are everywhere) that Perry and his Journey mates did singing live in studio on a radio show called King Biscuit Super Jam II is amazing.  And it's full of songs from Infinity (1978) and other gem covers, like this one, that gets to emphasize the influence on SP of soul-singer Sam Cooke, something Journey capitalized on very little during its superstar 80s run.






UPDATE: In a rare public statement about his personal life, Steve Perry explained the scar on his face (melanoma removal; two operations) in the recent photo with MTV VJ Martha Quinn.

Three weeks ago a routine mole was taken off my face and the lab report came back Melanoma skin cancer. I've had two surgeries in two weeks to remove all the cancer cells and I've been told they think they got it all and no other treatments are required.

On Sunday I was a bit depressed because Kellie's birthday was coming up so I went for a drive and ran into Martha Quinn at a street fair. It was so great to see her and in a few short moments I told her most of this story. She asked if I'd take a picture with her and I said, "If you don't mind my face scar." She said, "Not at all." I joked about me and Pirates of the Caribbean and we both laughed.

"Kellie" refers to a woman he began a relationship with two years ago, a psychologist who was participating in a documentary on cancer that he first saw while reviewing footage of the doco with a friend. Kellie was dealing with breast cancer that had been treated, went into remission and had resurfaced as Stage 4 cancer in her lungs and bones. SP goes on to write a moving and unexpected emotional disclosure about meeting her, and the intense love and loss that he experienced over the last year. Click over to read it. It's hard not to feel heartbroken and uplifted at the same time. He notes that encounter with Martha Quinn was therapeutic and Steve thanks her for it in the piece.

As a long-time fan who knows how rare statements by Mr. Perry are about his life -- and those are usually through his site to fans, not the press, what he wrote this week was extraordinarily intimate and revealing about the man whose musical compositions touch so many. And I'm not talking about DSB (Don't Stop Believing) or the myriad harder-edged anthems most casual folks know that he wrote with Journey or during his solo outings.

Many of the mid-tempo compositions (such as "I'll Be Alright Without You") and ballads (Faithfully, Open Arms and a ton of lesser-known pieces that I'm drawn to), in the wake of  how he crafted and shared highly-charged content about what occurred in this relationship reflects how easily these songs flowed from that same personal emotional space years ago. The ability to do so in putting melody and lyrics together serves as a both a therapeutic outlet for to explain experiences and feelings about people and places we'll never know about. The gift is doing it in way that communicated his (deeper-than-we-know) feelings in a universal way -- music -- that is what many of us connect to unconsciously when a Journey or SP song is on. I know it when I sing along...



Tuesday, June 4, 2013

Come to my reading: 27 Views of Durham: The Bull City in Prose & Poetry

On Thursday I will read from my contribution to the tome 27 Views of Durham: The Bull City in Prose & Poetry.
An anthology of Durham writers writing about their hometown, 27 Views of Durham creates a literary montage of the Bull City. In essays, poems, short stories, and anthem, the collection creates a sense of place, present and past. Contributors include Ariel Dorfman, Jim Wise, Barry Yeoman, Pierce Freelon, Pam Spaulding, Clyde Edgerton, poet James Applewhite, historian Jean Bradley Anderson, song writer Rebecca Newton, with an introduction by Steve Schewel. This is the latest book in Eno Publishers's 27 Views series that includes local anthologies of North Carolina towns: Hillsborough, Chapel Hill, and Asheville.
My chapter touches on two bits of Durham history and charm:

  • The rise and fall of South Square Mall and how it represented change and growth in the Bull City  -- Boom and Bust;
  • Working near a downtown "landmark" of sorts -- the train trestle that is regularly assaulted by oversized box trucks that slam into it, captured on video -- Film at 11'8".

If you're in town and have some free time, drop by! The 411:
Steve Schewel, Pam Spaulding, John Valentine and Jim Wise read their views from this anthology of the city known for tobacco, sports, and grit.  Come join in for a lively discussion.
Thursday, June 6, 2013 @ 7 PM
Regulator Bookshop
720 Ninth St.
Durham, NC 27705
919-286-2700
http://www.regulatorbookshop.com/Contact: Laurin Penland: regulatorevents@gmail.com 
The start time (7 PM) is almost past my bedtime these days; hopefully my health meter won't be on empty. Fingers crossed!

Here's a sample of one of those crashes at Pettigrew and Gregson via Juergen Henn:

Monday, June 3, 2013

Night and day (or is it Jekyll/Hyde) battle with chronic RA pain

This whole methotrexate journey to treat my rheumatoid arthritis has been so bizarre. I'm on week 7 now, and I've upped the dose to six 2.5 mg pills once a week after my rheumatologist cleared me because tests showed my liver was tolerating it. Took higher dose on Sat night. It made me so sick, sore all over, with chills and fatigue Sunday (I must have slept 12-14 hours), moody and blue, etc.

And last week was abominable. I only had one good day (Friday) out of 7, and had severe edema (swelling) in both of my legs, always much worse in the left leg. (That leg has always been problematic re: edema since the now-surgically-corrected herniated disc. No one knows why it's occurring -- I asked three different docs.)

So I was asking myself last night -- why do I want to keep on trying this medicine? I have to have patience because it takes 8 weeks or so to kick in, unlike some of the biologics (Enbrel made me sick for two days, but I felt spectacularly better within 5 days).

The good weird news

Anyway, I wake up today and the debilitating bad joint pain has abated (pain level is only around 4 out of 10)! And it's a pretty rotten weather day -- thunderstorms overnight, with rainy, humid weather today. That usually kills my joints, but I feel unusually unaffected. Maybe methotrexate is now kicking in. I can only hope.

If this relief holds through the rest of the week, that will be a good sign. It will mean only about 1.5 days of being sick from the med and the rest of the week with much less pain.

I'm not trusting the med at all yet -- and many people with RA have this love-hate relationship with methotrexate.  I gained some insight and solace from reading the entries at Rheumatoid Arthritis Warrior:
The most commonly reported side effects for the RA-sized doses are digestive irritations. This can range from mild nausea to severe vomiting and diarrhea. Hair loss is also possible, but with lower doses it is less common. Methotrexate can also cause a feeling of weakness which is referred to medically as malaise. I call it that “I’ve been kicked by an elephant” feeling. (I really was kicked by an elephant once… but that’s another story!)

Other common side effects of methotrexate include increased risk with infection and greater chance of sunburn, either of which may also be more severe with methotrexate.

Well, methotrexate side effects do sound harsh, don’t they? However, when was the last time you read a list of the effects of RA? Seriously, the list of Rheumatoid Arthritis symptoms is eerily similar. For the most part, RA is undoubtedly worse.

Saturday, June 1, 2013

Will my RA meds and travel by air kick my @ss?

My rheumatologist called yesterday evening. She's a gem; always responsive. We discussed the labs, which did indicate that I'm doing fine on the Methotrexatate (aside from the onerous side effects), and can go up to six pills (@2.5 mg, all in one dose) weekly. We talked about possibly going to the injectable route to avoid the stomach pain and nausea, but I only have that for a day or so.

My primary issues are the flu-like symptoms -- all-over body and joint aches, unnatural fatigue. Those last about 3 days. Then I have relief -- very little joint pain. The issue is whether over time I will have less days of side effects and more days of relief. I think this is week 7, so it's still a bit early to tell. I don't think I'll go the needle route for now. It's old school -- in a vial -- which makes it more annoying to deal with. I take my insulin and other injectables (Victoza, Lantus) via pen, which is much easier to deal with. At 4-5 shots a day, I'm already a human pin cushion. I'd like to avoid more if possible.

Anyway, the doctor also said that if MTX doesn't give me more relief after another month (I have to do labs again to monitor its effects on the liver for the first few months), I can try adding Enbrel back. That's another biologic sledgehammer drug. It gave me about 5 days of relief. Apparently together these drugs have been proven to be more effective than alone. But it means a real whammy those first two days on the combo.

Joint pain has been so bad this week that I've had to wear my wrist wraps even at night. My knees have been on fire. Only on Friday did I have anything resembling pain below a 4. It's been a steady 6 all week.

Ah, life with RA. Never simple, never pain-free. It's where things are.

I'm looking forward to going to NYC for my birthday (July); I hope that these med adjustments allow me to do a relatively pain-free walk across the Brooklyn Bridge. I may need to alter when I take them (I usually dose on Saturday evenings), so that I am not sick as a dog for the Sunday walk.


I think this was taken in 2007; on that day Kate, my brother Tim and I walked across to Manhattan and all the way up to Union Square. All that was possible before the fibromyalgia and the rheumatoid arthritis.
I also don't know how the air travel will affect me. Since the RA really started escalating in 2011, flying and the barometric pressure changes really hurt my joints and cause edema in my legs as well. I almost always experience a flare of bad fatigue and increased joint pain. This trip will be the first time flying since, hmmm, a long while, so I don't know what to expect. At least the herniated disc has been taken care of. Kate will have to handle the baggage, and I'll have to travel light; thankfully it's a direct and relatively short flight.

But I will do it. I have to.