Tuesday, December 31, 2013

Too little, too late love from ExpressScripts

Had a crash and burn day after my first day back at work on Mon -- without the benefit of my RA med (Orencia) because of ExpressScript's F-up last week.

I was in horrid pain yesterday; Kate had to drive me to work. I went to bed at 7PM; I was drifting off while sitting up on the sofa. Good thing I'm off tomorrow and Wed. God knows what shape I'll be in by Thurs-Fri when I have to try to slog through a workday again.

ExpressScripts is allegedly going to deliver the med tomorrow (which I have to wait and take on Fri to stay on sched). We'll see. I received this pathetic, too-late Tweet from the company yesterday:


Update (12/31): ExpressScripts released it for delivery today according to the ExpressScripts web site; that means I won't receive it until at the earliest on Thursday (unless UPS is delivering on New Year's Day). I tried the tracking number given, but the UPS site gives the reassuring message "UPS could not locate the shipment details for your request. Please verify your information and try again later."

And then it did arrive later in the evening -- via FedEx! No wonder their site had the tracking screwed up. But I have a month's supply for now, in a couple of weeks I have to go through this all again, since I have to order it a month at a time -- by phone -- you cannot use their web site to re-order.

Friday, December 27, 2013

You know just how much Express Scripts/Accredo sucks?

Time to vent. It's all I can do when you're up against the corporate health industrial complex.

Express Scripts (@ExpressScripts)/Accredo (formerly Medco) handles my prescription insurance. These companies suck; don't ask me, just follow the hashtag #accredo or #medco. My local pharmacy is the reliable CVS, but my health plan, Blue Cross/Blue Shield, uses Accredo/Express Scripts as my primary delivery system for my chronic condition meds (I have rheumatoid arthritis, fibromyalgia, and insulin-dependent diabetes). I'm able to get a 3-month supply of most drugs at the cost of one script at CVS, but it's mail-order.

For RA I take Orencia, a once-a-week injectible that is a biologic. These drugs aren't delivered in 3-months supplies or auto-refill (these are expensive drugs,  at $20K/yr.) by the company; you get a month at a time. In fact, Accredo won't fill it unless you're practically out of it. I told them last Thursday when I arranged for delivery the following week that I was taking my last dose the following day (that Friday) and I'd need the Orencia delivered before the following Friday. They arranged to have it arrive yesterday.

I need to take the Orencia to be able to work without being in excruciating joint pain the following Monday after taking it on Friday afternoons. This class of drugs come with a lot of bad side effects (fever, chills, body aches, extreme fatigue, nausea and more), that last for a couple of days, so that's why I take it on the weekend -- so I can be in the best shape as possible during the rest of the week. It's hard to focus when you're in a lot of pain, so Orencia (and alternatively, Enbrel), have been my lifeline to being able to be effective. It has come at a cost -- I lose my weekends to these drugs. But as I said, it has allowed me to not be out of work, sick and writhing in pain.

The Thursday delivery that never happens

So yesterday comes and goes; I'm supposed to take My Orencia this afternoon. Still doesn't arrive. I call them up and the nurse says THEY WERE OUT OF STOCK AND JUST CANCELLED MY ORDER.

No phone call to me. Express Scripts/Accredo whatever the F they are calling themselves JUST DID NOTHING.

I asked, well then why didn't you call earlier in the week to see if a local pharmacy might fill it (even one dose). No answer. Get put on hold several times to see if they can find it.

She says it's now in stock and doesn't know why someone didn't contact me. I told her that I needed this med to take over the weekend (so I can deal with the bad side effects and be effective at work).

She puts me on hold again. Then she says "They do have it in stock; the soonest delivery date they have is NEXT TUESDAY. That means I don't have it today, of course, and that means going a week without it because I cannot take it when it gets here; it put me off schedule for dealing with the side effects.

And since it's Friday at 5 PM, it's too late to reach my doctor about whether to go without for a week (this isn't considered a medical emergency since I won't die without it, in corporate speak), or to take my remaining dose of Enbrel (another RA med I switched from to try Orencia) that I have in the fridge.

Guess I'm just f*cked either way. 

Since I'm only working 3 days next week because of the new year holiday, my inclination is to suffer through the week until next Friday rather than use the last dose of Enbrel today. I don't know if Express Scripts/Accredo is going to F up like this again, so I'm loathe to leave myself with nothing.

She ends the call, "Have a happy holiday/happy new year" I had been polite during the entire call. I just could no longer hold it together so I just hung up.

***

Update (12/31): ExpressScripts released it for delivery today according to the ExpressScripts web site; that means I won't receive it until at the earliest on Thursday (unless UPS is delivering on New Year's Day). I tried the tracking number given, but the UPS site gives the reassuring message "UPS could not locate the shipment details for your request. Please verify your information and try again later."

And then it did arrive later in the evening -- via FedEx! No wonder their site had the tracking screwed up. But I have a month's supply for now, in a couple of weeks I have to go through this all again, since I have to order it a month at a time -- by phone -- you cannot use their web site to re-order.

Saturday, December 21, 2013

Working my way through the weekend med grind.

Just posting articles in between bouts of nausea and doubled-over-level pain. Hard to distract from it; watching L&O: CI marathon (2002 eps; all Goren/Eames).

Another Saturday lost to MTX and Orencia side effects. Had to take a long nap and I still am pretty non-functional, all over pain and chills. Bleh.

Turns out Orencia is no better or worse than Enbrel, though the injection hurts a lot less.

The depressed/blue mood caused MTX is so pronounced it's kind of frightening. But that passes by late Sunday, disappearing as suddenly as it comes on; same with the other side effects. They really should alert folks more about that.

At least I don't have get on the work hamster wheel for a few days. That wheel has been way too fast lately.That or I'm just starting to lose capacity to recover. When you have to turn in at 6:30 PM, it seems kind of a soon-to-be lost cause.


Saturday, December 7, 2013

When your prescription insurance company forces you on meds that don't work

I tend to be more pragmatic when it comes to trying new medical therapies; if dealing with some side effects is part of the price for improved quality of life, then it's worth the gamble.

After the personal trial and error over the years to find medicines that work well in concert to treat my myriad conditions, I received letter in the mail from my prescription insurance company, Medco/Express Scripts, booting some from of its covered list, substituting a med that is not only more onerous to administer, but doesn't even measure up in terms of performance of the prior med.

Such was the case of Victoza. Its manufacturer, Novo Nordisk, lost its contract with Medco/Express Scripts for the drug, an non-insulin injectible that enhances blood glucose control.. It's all about the Benjamins.
The world's biggest insulin producer said it had lost two contracts with Express Scripts Holding Co - a contract for its diabetes drug Victoza, won by Bristol-Myers Squibb Co, and a deal for insulin Novolog, taken by Eli Lilly & Co.
A spokesman on Tuesday confirmed the lost business but had no further immediate comment.
Express Scripts is a purchasing organization for a number of prescription programs serving between 40 and 45 million Americans. 
"This is a serious blow for Novo Nordisk. I think it will hit earnings per share by closer to 3 percent in 2014," analyst Soren Hansen at Sydbank said.
In case you were wondering, here is the list of excluded drugs. Here's an another link explaining that the co-pay supplements offered to patients to defray the costs of the drugs has now blown back on the drug companies as the insurance companies figure they don't have to cover them. And the patients are caught in the crossfire.



Not only was Victoza off my plan, but even my blood glucose meter! The Freestyle strips and meter are no longer covered, so I have to get a LifeScan One Touch. That's not a big deal, since I can use the other meter until I have no more strips left.

But back to Victoza. What was the substitute offered by Medco/Express Scripts? Bydureon.
The Food and Drug Administration twice declined to approve Bydureon in 2010, with its most serious concern being that the drug might contribute to heart rhythm abnormalities. 
A study by Amylin, which is based in San Diego and led by Daniel M. Bradbury, suggested this was not the case. Trading in Amylin’s stock was halted in advance of the announcement of the approval; shares rose as much as 16 percent in after-hours trading.
Analysts expect annual sales of Bydureon to eventually exceed $1 billion. But they are less enthusiastic than they once were, in part because of safety concerns involving thyroid cancer and pancreatitis.
Not that Victoza doesn't have its share of risks and controversy. I've had good success with Victoza (a good number of people cannot tolerate it). Having lived with diabetes for ~30 years now, I've dealt with the old syringes/vials and mixing for years, so once I was able to move over to insulin in a pen with short slim, needles (Victoza is also administered by pen) that didn't have to be refrigerated all the time, or kept in a cooler, it was life altering.

Well, Bydureon (see the photo above) is a throwback to the old days of mixing the drug when you administer it. It comes with a spiral bound manual (yes it's that many steps) to assist patients in the DIY of mixing the powder with the liquid in a syringe. It's because once the two are mixed, a chemical reaction takes place to create the medication itself and must be used immediately.

The manual is fairly straightforward, but it's beyond annoying to have to go through these dummy-proof steps that are designed for people who will f*ck it up. I'm fortunate in that I'm not squeamish about needles after all these years, but I can imagine someone with shaky hands and a queasy stomach about shooting themselves up in the leg would be intimidated, so this is why the instructions are 20+ pages.

But god almighty it's a pain. The Victoza pen only involves screwing a very short needle on the end (all the pen needles for insulin products are standard sized) and you shoot up; you can leave it out at room temp until your pen is empty.

Efficacy of Bydureon vs. Victoza

OK, after a few weeks on the drug, I can safely say it doesn't do anything for my BG control; no awful side effects, but it's not working. My numbers have been significantly worse from the start (morning fasting BGs around 80-100 are now 190-210).

A few weeks after starting Bydureon, I also switched RA drugs. I work aggressively with my rheumatologist to find the best biologic that gives me enough quality of life to continue working, knowing that every single one has caused me to get sick after administering it (I choose Friday afternoons). I am usually sick most of the weekend -- fever, chills, joint pain through the roof -- but they subside and by Monday I'm good to work, albeit I do run out of gas after 4PM and the other aspects of RA seep back (fatigue, weakness). So I've been through Methotrexate, the front-line base drug patients start on, as well as Plaquenil. I can only tolerate low doses of MTX; I have horrible side effects, but it works well with the biologics I have tried -- Humira gave me the most relief, but caused intolerable side effects (like losing my voice). It stopped when I went back on Enbrel.

Enbrel only gives me about 4.5 good days so my rheumatologist and I decided to see if Orencia will work.

Orencia can be taken by infusion (IV), or DIY via prefilled syringe. Enbrel comes in a prefilled pen and the shot hurts like hell. Orencia is in a more intimidating syringe with a needle you can see going in, but it hurts less than Enbrel if you let it sit an hour before giving it.  Both burn as the medicine goes in.

Yesterday was really not fun, as I noted on Facebook:

Wow, that was one horrible afternoon. Fridays are when some of my weekly meds wear off and it was a sudden hard crash of surging pain everywhere that all I could do was pass out on the sofa. Orencia is clearly no better than Enbrel so far and has a rougher "finish." At least I made it home.

Then, when I went through my weekly ritual of re-upping the doses/injections (the ones that me sick over the weekend), I had to do one needle per leg, since the meds burn going in and leave the limbs sore. I take pain meds an hour before to blunt it, and that's about all it does. Since Medco made me switch one drug (it stopped covering one), the substitute hurts a ton more. Figures. (I guess the GOP's response is I should just stop complaining and die quickly, lol.)

One went a bit rougher than the norm, with profuse bleeding down my leg that took a while to stop to get a bandage on.

Good times...tomorrow's another day (or some reasonable facsimile).
 — feelingpained.

The Bydureon injection was what caused the bloody leg. I went on to say this in the comments:

...all out there battling chronic/life-changing (and particularly "invisible") illnesses know it's one day at a time, with some days a lot worse than others. And it's often less about being brave but tenacious, because your alternative is to give up. Though now I fully understand how intense chronic pain can push people to that alternative, something I didn't appreciate until I ended up like this. 

I am thankful for my lack of squeamishness about needles, blood, surgery, onerous and humiliating side effects, etc. It has to be horrible for those who have that extra burden. 

The various auto-immune-related conditions I have made themselves apparent over ~30 years (RA is the latest), it has been interesting to see how much progress has been made in medicine on what are complex diseases, but it's clear why there are no cures. Effects are so individual to one's body that even subtle differences in meds and therapies (traditional or holistic) may have radically different impacts, positive or negative. Trial and error that requires endurance (and insurance, and we see how that system fails too many!), is all we have to move the ball forward. 

I am fortunate to have an excellent, responsive health care team that does take the time to work with me (i.e. over 20 years w/the same endo). So there's a practical reason why I have little patience with the "why don't you just leave NC" arguments re:LGBT rights issues. Life isn't that black and white for everyone, and why should I have to give over the good parts of life in my state to these backwards bigots? Oy, that's a whole new thread, lol.


The major #FAIL of Orencia is it doesn't have the positive impact on my BGs that Enbrel did. The Victoza plus Enbrel worked so well that I was able to cut my insulin use by >50%. The BGs I'm running now are horrible and require 4+ shots a day. I was down to 2, sometimes 3 at most. Since I'm getting just about the same relief, I'm pretty sure I'll end up back on Enbrel. 

I don't see whether Medco/Express Scripts will cover it long term; if it doesn't then it's back on Enbrel no matter the what. I see my doc next week, so we'll discuss next steps. I may end up on voicemail hell with Express Scripts.

Sunday, December 1, 2013

Turning 50 means screening for colon cancer - do it for your health

I turned 50 this year, so the doc said it's time for my first colonoscopy. It's tomorrow AM, so today is the horrible part of it -- the prep, or colon cleanse. If you have done it, you know what's coming:

"There's no debate; people are afraid of the prep. It's the No. 1 barrier to getting a colonoscopy," said Andrew Spiegel, head of the Colon Cancer Alliance" (http://goo.gl/W4ft6L)

So off I go (literally to the john for much of the day) after consuming:

1) only liquids for 24 hrs; the only thing resembling food -- clear chicken broth;
2) milk of magnesia (that I took last night);
3) 3PM: 2 Dulcolax tabs + 16 oz clear liquid (my choice, Crystal Light Lemonade since I can't have sugar; most drink Gatorade)
4) 5PM: 48 oz of clear liquid w/8.3 oz of MiraLax mixed in (or 2pks per 16 oz bottle) , driving 8 oz every 15 min.

...And one more 16 oz of the Miralax mix tomorrow at 4:30 AM!

Let the fun begin! Become one with the potty.

Here's a good article: 27 Insider Tips and Tricks for Colonoscopy Prep, compiled from FB friends of the Colon Cancer Alliance.

***

And this awareness campaign for men is already in progress...

"Have you noticed things getting a little hairy this November? We’ve loved seeing #coloncancer join the Movember movement, bringing attention to men's health issues through funky facial hair this month. Several rock star fundraisers, including radio DJ Wes Styles Radio, grew out their facial fuzz in support of colon health and the Colon Cancer Alliance -- thank you, guys! Read more about the movement": http://www.ccalliance.org/blog/remember-to-shave-this-too

Thursday, November 28, 2013

Happy Thanksgiving! Menus, please...

Hope you are having a good day however you may celebrate it (or not).

What's your Thanksgiving this year -
1. Traveling far from home to be with friends/family, cooking together.
2. Being a guest with friends/family.
3. Hosting and cooking for friends/family.
4. Going out to eat for the holiday with friends/family.
5. Some other tradition.
6. Have to work during the holiday.

On the Thanksgiving menu: leg of lamb, collard greens, mac & cheese, dressing, broccoli, sweet potato pie, apple pound cake...

Getting hungry yet? Collards on the stove (yes, there's ham in there!), cooking away. Yum. I got them at the Southern Durham Farmers Market on Tuesday in nice fresh bunches.


Here is Miranda's Apple Pound cake:


Here is the recipe:

Apple Cake
4-6 apples, Stayman Winesap (Milburn) or other apple for cooking (four lg or six med).

1 tablespoon cinnamon
5 tablespoons sugar
2 3/4 cups flour, sifted
1 tablespoon baking powder
1 teaspoon salt
1 cup vegetable oil
2 cups sugar
1/4 cup orange juice
2 1/2 teaspoons vanilla
4 eggs
1 cup walnuts, chopped (optional)

Preheat oven to 350 degrees. Grease a tube pan. Peel, core and chop apples into chunks. Toss with cinnamon and sugar and set aside.

Stir together flour, baking powder and salt in a large mixing bowl. In a separate bowl, whisk together oil, orange juice, sugar and vanilla. Mix wet ingredients into the dry ones, then add eggs, one at a time. Scrape down the bowl to ensure all ingredients are incorporated.

Pour half of batter into prepared pan. Spread half of apples over it. Pour the remaining batter over the apples and arrange the remaining apples on top. Bake for 1½-2 hours, or until a tester comes out clean.

On to the Mac and Cheese!

Pam's Mac and Cheese

16 oz Velveeta
2 7.5 oz. packs of Sargento 4 State Cheddar (Natural Sharp Wisconsin, NY State Sharp, Mild California Sharp, and Vermont Sharp) Blend.
~2.5 cups of milk (2%; I eyeball this one, so you may need a little more)
1.5 boxes of pasta (we use Rotini to get that cheese all into the pasta!)
black pepper
1 aluminum foil pan, about 3-4 in deep.

Cook the pasta until it is still a little firm; drain, rinse with cold water, drain and put into aluminum pan.

Put the Velveeta and sharp cheeses into a non-stick pot with the milk. Heat and continuously stir once cheese starts to melt until it is fully melted and is a smooth sauce consistency.

Pour the cheese over the pasta covering it well. Take a spatula to stir it over all of the pasta evenly.

Sprinkle black pepper on top of the mac and cheese.

Heat oven to 425. Place in oven on top rack and bake covered for 15 minutes, 10 minutes uncovered.

Serve and eat!





Friday, November 15, 2013

Journey donates $350K to World Food Programme for relief effort in the Philippines after Typhoon Haiyan

It's mass devastation in parts of the Philippines after Typhoon Haiyan hit recently. In what is no surprise, CNN's Anderson Cooper, who has covered natural disasters and how on-the-ground efforts have gone in the Gulf after Katrina, in Haiti, and now here. AC 360:


  • 3,631: The official death toll, according to the Philippines National Disaster Risk Reduction and Management Council.
  • 12,487: The number of people wounded.
  • At least 1,179: The number of people missing after the typhoon.
  • 9 million: The number of people affected by the storm.
  • 44: The number of provinces impacted by the typhoon.
  • 55: How many cities in the Philippines are affected by the tragedy.
  • 536: The number of municipalities in the Philippines facing destruction.
  • Nearly 2 million: The number of people displaced after the typhoon and in need of food.

With those stark numbers, Arnel Pineda, the current lead singer of my favorite band Journey, and a native of the country, along with this bandmates are donating $350,000 to the World Food Programme (donate here: "Don't Stop Believin' in the Philippines").

CNN just released the video of Anderson's interview with Arnel and the status of the relief effort so far.

Thursday, November 14, 2013

Made it - Celebrated 20 years at Duke University Press...still no regrets about shutting down the Blend

Yesterday afternoon I celebrated my 20th year at Duke University Press at our annual meeting. I posted about it on Facebook on Wed, where a lot of well-wishers stopped by if you want to see the thread. As I said there...

A long, interesting journey it has been so far...and all while starting (and concluding) a political blogging/activism career that I somehow fit into a nine-year chunk of the same life timeline.

I doesn't seem like 20 years; not like I planned to be in any job for that long (though I've held 3 positions during my time at the Press, first as a production coordinator in the Journals division, then as essentially the help desk person/database developer, and later as manager of the IT department, a position I hold to this day.

I am fortunate to work with great colleagues, and to lead a kick-ass IT staff at a workplace that values diversity and has policies that gave me the freedom to be out of the closet w/o fear of being fired. And until ENDA is law, that is the state of things here in NC unless your employer specifically articulates protections. Same-sex spousal equiv benefits cannot be taken for granted, either. NC will turn itself around eventually, but the teabagger/teahadist turnover in 2010 and its fallout will take a lot of work to counter.

While this day job is all-consuming, as most readers know, I was simultaneously burning the midnight oil (and almost all of my paid time off) writing, attending speaking engagements and doing first-person reporting for Pam's House Blend -- effectively at a full-time pace.

I was never one of the fortunate political bloggers in the the LGBT world to monetize the blog enough to quit the day job, but I was smart enough to know that the day job was the only one putting a roof over my head and is far more predictable (though being in IT, that alone requires being professionally nimble in what is a volatile field) than figuring out whether people will donate enough, or enough ad revenue would come in, waiting for some rich benefactor to see the value of your work, or hope the mainstream media to snatch you up to pay you to do what you love. But that's ok. Life threw me a different loop.

Fibromyalgia and rheumatoid arthritis were the final straws that broke me physically, and PHB had to go on my life chopping block.  Of course when I posted the pic of me holding up the toasting "chalice" celebrating my 20 years yesterday, some folks noted how healthy I look. It's the dilemma of invisible illnesses like RA that sap your energy, cause constant physical joint pain, and eventually makes its presence visible through joint deformity. Thankfully I'm still in the "just" painful stage.

But I'm under no illusions about what ahead. I do get more sleep and that helps me stay functional. Even so, I'm now reduced to 75% time at the Press and it wipes me out physically. There is no way this body/mind could continue doing PHB while holding down the FT job.

Of course, I haven't had the pleasure of being on the receiving end of death/violence threats on this job (yet!). Blogging was definitely more "entertaining" on that front.

It's only been since July of this year that I stopped blogging, and I can't tell you how many offers to write (some actually for $$, most not), and requests even pretty desperate ones, to promote work or an event or some press release even just on social media (I'm still active on Facebook, Twitter and G+). I'm not exactly sure my posts on those limited platforms alone are nearly as effective as a long-form blog post, so I'm not sure why my inbox is still constantly overflowing.

Maybe it's still denial on their part that I actually did walk away from the blog and that I'm merely vacationing from it.

I have no regrets walking away from that insane level of commitment that blogging/activism entailed, other than disappointment that no one here in NC has stepped up to fill the void and the dearth of lesbians of color (prominent or not) in the LGBT blogosphere after my nine years immersed in it. Even more distressing, where are the lesbians of color in the South to represent in the digital world of activism?

I'm not sure anyone will step up, though. Independent political blogging,  in my opinion, is on the way out as a medium. Unless one has the luxury of time, energy and the expectation it will always be a second job, it is tough going -- you have to rely on your passion for reporting, commentary and curating news alone.


Saturday, October 26, 2013

Summer's gone...the votes of the dogs are in.

Reached freezing here in Durham. Heat has been on for last couple of nights. At least we unpacked our winter togs last Sun., so we had long-sleeve shirts and sweaters this week. In denial...left a few summer weight Ts out. Can probably still wear my short skorts with knee-highs for a while, but will have to switch over to tights, if I can stand it.

The pit bull "hydra" has been under fleeces and sleeping close. Malea is slim like a whippet, so she will probably need a sweater. Casey has more padding and a thicker coat, but she doesn't like hanging outside long enough to get frosty (hates getting her feet cold or dirty!).

Saturday, October 19, 2013

Next stop...Orencia for RA

Fri trip to rheumatologist went well, though she's hoping that I can find a combo of meds for RA that gives me more than 4.5 good days vs 2.5 sick days a week from side effects. 

We decided to try Orencia (another biologic weekly injectible) to go with the MTX, but first have to see if my insurance covers it. Same kinds of side effects are possible, such as increased infection risk, fever, chills, etc. It could go either way. Guinea pig time for me. Used to it though.

Otherwise I'll probably stay on Enbrel, which has brought the most relief out of the various cocktails, but the sick days are pretty debilitating. But it's better than no RA meds at all

Got my flu shot while there. Last year's was useless. Since it's only about 60% effective, I (and a lot of people, including the nurse who gave me this shot, caught a different strain than the vaccine covered. It was a heinous flu bug. Hope this year's bypasses me!


Sunday, October 13, 2013

More weird MTX dreams...

Strange dreams. Always have them after taking MTX dose on Fridays. In one  last night I had a heart attack on a NYC street (!, though I was watching L&O when I fell asleep, lol). In another I was on a tour w/Journey (as a journo) circa 1978 in Philly; last one I was on some smallish ship (more like a large ferry), traveling where it looked it was Vancouver in winter. I woke up and my lower legs and feet were cold.

Who knows what all that means. I rarely remember any dreams, probably b/c my usual sleep is not very deep; it never has been.

However, when I take those RA meds, I sleep unusually hard,  though I still wake up from neuropathy every so often. MTX can mess with your head.

Tuesday, September 17, 2013

Pit bulls steal challah bread...


Pit bull update - Malia and Casey are getting along swimmingly. They apparently had only one tussle -- and it was over a loaf of challah bread!

I had left it too close to the edge of the counter in the kitchen and we went out to run errands. I know it was Malia (since Casey isn't bold enough to counter surf). She must have filched the bread, then pulled it into the living room and she and Casey must have had a short fight over who got the loot.

We came home to some plastic from the bag that the challah was in, but no sign, no crumb of any kind. They were laid up, fat and happy from engorging themselves.

Here's Casey (top) watching Restaurant Impossible while Malia puts her head in my lap.

As expected, Casey, who is about 2x Malia's weight was the wimp. She ended up with a boo-boo on her nose that has left a scar, but otherwise you'd think nothing happened.

They really do love one another -- they play fetch and tug of war, sit together on the sofa, and even sometimes sleep in the too-small-for-two-dogs bed. Malia gives her kisses, and, as the new dog, always looks to Casey for guidance.

It has been a great match; it's wonderful to give another pit a forever home.

RA update: travel success + methotrexate = proceed with caution

Some good news and bad news. At my rheumatologist visit last Friday I was able to tell her that there's a definite difference in pain relief when I take both methotrexate and Enbrel. I went on Enbrel alone for two weeks (dosing on Fri), was sick about half the weekend, and my relief lasted from about mid-day on Monday-Thursday. By Thursday evening, it's like a wind-up doll that's kaput and someone took out the key. I am toast, and in searing pain.

On the MTX plus Enbrel, my relief is from Monday AM to Friday afternoon. That's not bad. I'm dosing only 4 pills rather than 6. I was having way too many adverse side effects from the MTX -- GI problems, depressed mood, severe fatigue, aches and pains. On the lower dose I have little mood effect, and less-severe overall symptoms. [The only problem that has cropped up, and it's a weird documented side effect, are nose sores/nose bleeds. Oy, it's annoying and painful at times. Will have to mention that at my next visit.]

So that's the overall good news. The bad news is my last labs showed a spike in some of my liver numbers. MTX affects the liver and there's enough concern that they asked me to come back in 2 weeks for another blood check. I already come once a month for blood work, so my guess is that staying on MTX is in jeopardy if my numbers don't look good.

Some other good news is that I was able to successfully travel for work last week. Successful as in I didn't need wheelchair assistance, I managed stairs, and was able to work well at the conference during the day. Thankfully one of my colleagues (thanks, Lee!) who was attending the conference volunteered to help carry my bags at times, and drove the rental car so that I didn't have to endure long walks or drives.

At night I was toast by about 7:30, and went back to the hotel to crash, re-medicate, apply all my liniments to my sore joints and get in the sack so I could be productive the second day.

I actually had to go into the office the day after the trip; it was questionable whether I was in good enough shape to get my sorry ass into the office, but I did for an important meeting. However, I was out Friday, and then most of the weekend I was in misery, recovering from the travel's impact on my RA and fibromyalgia.

I know for a fact that if I hadn't done the Enbrel/MTX combo, I would have been much worse off post-travel. So, I hope that, despite the pretty nasty MTX side effects, I won't have to discontinue it since it has done some good in getting my constant pain at a liveable, if not enjoyable, level.

Tuesday, September 3, 2013

Aw, crap - disc re-herniation...and other fun news

I've been avoiding this topic for a while because, well, I figured there's not a lot to done about it.

I had a bilateral L5-S1 discectomy in January; it brought me great relief from severe sciatica pain. Instantly. Over the last 8 months the normal post-op numbness had been retreating down my left leg to just above my left foot; there was a chance that my ankle and foot would remain numb because of damaged nerves. That was fine.

But over the last month, my left leg  started to go numb, the sensation creeping back up my leg to just above my left knee. My leg was also markedly weaker again. I was afraid that I had somehow re-herniated my disc (though I am careful about lifting heavy objects) so I went to my surgeon and he had an MRI done.

Got my results today and it was a bit surprising -- I have re-herniated, but on my RIGHT side:


There's a lot of technical jargon up there, but essentially, the surgeon explained that the probably cause of the symptoms on the left side is from the general degeneration of the disc, or as he said "it's probably shot -- fragmented and compressing/collapsing." The only solution for this is fusion.
Lumbar spinal fusion is a type of back surgery in which a bone graft is inserted in the spine so that the bones in a painful segment of the spine fuse together. The fusion aims to stop the motion at a vertebral segment, which should decrease the pain caused by the joint. After the surgery it will take several months (usually 3 to 6, but sometimes up to 18 months) before the fusion is set-up. This surgery has been improved over the last 10 to 15 years, allowing for better success rates, and shorter hospital stays and recovery time.
Right side, reherniated (the bubble you see see).
Another view -- I may not feel pain on the right because the prior surgery created space, relieving pressure (white space).
I'm not in what I consider acute pain, just a lot of numbness and general discomfort. My leg drags a bit. The surgeon and I agreed that it's not time for surgery. Walking long distances for exercise has become painful again, recovery from the pain inflicted from impact is draining.

From the left side, the murky area full of scar tissue;
notice the compression in that disc vs. healthier 
one above.
Well, in my case even if I did want to have surgery I couldn't -- I don't have enough FMLA to cover the recovery time. Yes, that's right. I have to work with a herniated disc until it becomes an emergency situation, as it did for me back in August. 2012. He said it's hard to get Blue Cross/Blue Shield to approve a fusion otherwise anyway.

Regarding the issue of the herniation on the right side, it makes no sense to operate unless there is acute pain involved, and there is not --  I'm asymptomic on the right side, save the neuropathy that pre-dates the spine injury.

So my options from his POV are PT, pain medications and/or epidural steroid injections, until the disc degenerates enough to require surgery. I'm going to tough it out with Aleve and occasional pain meds I use for my RA.

Not sure how this will affect my travel (I have a couple of upcoming trips and they will do me in re: my RA anyway; nothing like wondering if you're going to re-herniate yourself into the ER. But I cannot live trapped by the "what ifs".

Related:
* Back to work...butthurt begins in the chair
* Cleared to go back to work!
* Working my way back to trek across the Brooklyn Bridge for my big 5-0
* Milestone: tanking up...and a good day for PT walking (finally)
* RA rears up and says "don't forget about me."
* Can put on jeans again!
* Not so fast, young lady...your back is still f'd up
* Post-surgery update: tail end of flu; may need another MRI
Week 3 post-spine surgery, week 2 of the flu
Week 2 post-L5-S1 slice and dice: good news, not so good news
News on life after the L5-S1 slice and dice

Tuesday, August 27, 2013

We get mail...strange marketing mail. I am involved in a covert TP operation.

We rarely get products in the mail to test out; maybe we're not in the right zip code. One time I wrote about the joys of the Swiffer (this was when it first came out), and wrote about it on my web site (this was pre-PHB), and Procter & Gamble sent me one of their first WetJets. Guess the PR people scanned the web for positive reviews and rewarded customers with some (useful) swag.

That's the last time I recall receiving "free stuff" of value in the mail. Well, today I received a little box marked "Top Secret Info For..." and "Remember: Just Act Natural" and "Scott Secret Swap" on it.

What could it be?

Had to hot foot it into the house to open the box. My guess was correct -- if it's Scott, it must be a roll of TP.

One can only hope that "Scott Naturals" -- whatever that means -- is less tortuous than standard 1000-sheet Scott TP. That traditional one is like sandpaper. Apparently, the "Naturals" series is made out of recycled material.

This campaign is kind of amusing.

YOUR MISSION
Swap out the roll you’re using now with a roll of Scott Naturals™ without telling your family.
If you find yourself in danger of being discovered, just follow these three simple steps:

SWAP your roll for Scott Naturals™.
WATCH as your family never notices.
ROLL on without sacrificing quality.

Remember your training, and good luck.
The box also came with a coupon for $1.25 off of a pack of 12, so I guess the company is pretty anxious to crack into the eco-friendly heinie wipe market. Scott has gone so hog-wild on this covert campaign concept that it also has this Top Secret Video (oops, I'm declassifying the mission!):




Thursday, August 15, 2013

The Advocate asks - Is Pam's House Blend Impossible to Reproduce?

I laughed when I saw this headline at the Advocate's web site -- you only see it when you share the article on social media such as Facebook. The actual headline is:

Good to the last drop - Pam's House Blend"Good To The Last Drop:
After a decade as the loudest — and sometimes only — digital voice in the South coming from an out woman of color, Pam’s House Blend closed up shop July 1. Now she may never be replaced."


I was interviewed a few weeks ago by The Advocate's Sunnivie Brydum about the end of the Blend's run and completely forgot about it -- I've been snowed under on the day job that I've held all during the nine-year run of the blog. It's what keeps the roof over my head; blogging was never profitable for me, and I explained why in the piece:
"Despite its countless accolades and ever-increasing traffic, the Blend never gained the type of financial foothold that some more mainstream, news-heavy LGBT blogs have secured. Spaulding believes the reason behind that is two-fold. First, Spaulding’s refusal to run what she calls “skin ads” — services targeting gay men with often racy images — that pay handsomely, kept the Blend’s earning potential relatively limited. And, “while the work at [The Blend] was important, it didn’t necessarily entertain in the same manner as those blogs that would generate advertising of that sort anyway,” says Spaulding, referring to higher-traffic sites largely targeted to and run by gay men like Towleroad, Joe.My.God, and Queerty. “At the same time, [Blend] readers were looking for connections to the content to their lives as LGBTs, people of color, people not from gay ghettos. That kind of content may generate awards, and reach readers of influence, and even get me invited to speak on the panels at important conferences, but it doesn’t pay the bills.
Which is why, throughout the Blend’s existence, Spaulding held down a full-time job in addition to her tenacious blogging. But the toll of working essentially two full-time jobs — while only receiving the salary of one — eventually wore on Spaulding, who struggles with several chronic health conditions, including rheumatoid arthritis and fibromyalgia. A decade of hard work depleted Spaulding’s reserves to the point that she decided to close up shop in July."
And about the question regarding the Blend being impossible to reproduce --  it's true -- and not because of yours truly, but because "new media," blogs and traditional news media were in a very different state way back in 2004. Would a black lesbian (and unknown) voice producing a political blog out of NC even be noticed in 2013? Read the article and weigh in.

I love the bit at the end of this piece (I didn't suggest it, btw):

"Spaulding still maintains a personal blog at PamSpaulding.net, where she writes about non-political passions including health, pit bull advocacy, and her favorite — if much-maligned — band, Journey."

Yeah, baby!

Journey sampler






We have a new addition to the furry family - Malia the pit bull

We brought in Malia -- adopted from the Wake County Animal Shelter. She's about 3 years old, has probably had one litter. She's spayed now, of course. She's sweet, quiet and is very housetrained. Not one mistake in the house during this first 3 weeks with us!

We weren't looking for another pit bull, but she stood out in the crowd because she had just the right temperament, quiet, cuddly, and playful. Not high-energy, just loves to run in the backyard.

Casey, our other pit, is taking it well -- she's so passive that she's barely growled a couple of times, and has even played with Malia. A few photos:


Sunday, July 28, 2013

Half the weekend lost to biologics...the trade off that allows me to work.

Argh. Friday Methotrexate/Enbrel dosing has me sore, sick and feeling awful moodwise this AM -- all "normal" side effects. I did OK on Sat, but now it hits like a ton of bricks, including fluid in my lungs when I wake up. I know it will get better by Monday -- all the symptoms go away -- but I hate losing half of my weekend to this "therapy" for RA. I know others out there know the perils of biologic meds all too well.

It's not the picture they paint in the TV ads. But I get a good 3-4 days out of this treatment (so I'm able to function at work) before I crash and burn again. Friday's trip to the rheumatologist had me reduce my MTX dose to 5 pills instead of 6 to mitigate slight upward trend in liver damage numbers as a precaution. Rest of labs OK.

I did have the energy (and lack of nausea) to go to look at doggies at the shelter; we're still mourning the loss of Chloe, but we know eventually we'll find the right one to fit in our family.

Thursday, July 25, 2013

I feel like a zombie: this AM is definitely large (unsweet) Bo tea time.

Had to head to the Bo to get a big iced tea. I had some Bo rounds with it this AM. It was unsweet, of course, since I'm diabetic (it's been 32 years and counting) -- I don't even know what sweet tea tastes like at this point.



Quite a few order half n half sweet/unsweet. I guess that's a feeble attempt at "health" lol. Got my free to-go refill of unsweet before heading to the office. Mmmmm...

Aside from Bojangles, a good many restaurants here do brewed iced tea right -- they have to down South. I recall one national chain in particular that got in the doghouse when it opened shop here -- The Cheesecake Factory -- and it didn't have any plain black iced tea on the menu, only spiced or fruit-infused options -- WTF?! The complaints mounted and a few months later they were brewing "regular" tea for patrons here.

The other lesson some (failed) restaurants down here learn the hard way is that it's FREE REFILLS or die. I usually expect to pay for a refill up north, but down here it's heresy. Even Junior's in Brooklyn gives you free refills of brewed tea (but you pay for a refill of soda or other beverage).

Monday, July 15, 2013

Our Bichon Chloe crossed the Rainbow Bridge last night...

Chloe was 12.
Our furry family members are near and dear to our hearts, and it's sad that we outlive them and have to let them cross over the Rainbow Bridge.

I've been through this sad ritual several times with our dogs and cats - Muffet, Miffy, Cody, Jade, Addison, Red, Tonka, Bailey, and now, as of July 14, 2013, Chloe, our Bichon Frise. Because we adopt mostly adult dogs, it means less time with them, but it's worth it to give them a few years of love they may have otherwise never known. It's always painful to see them go, and it leaves a hole in your heart.

This is especially hard for Kate; it's her first pet loss (since adulthood); Chloe was her first dog she lived with on her own when she moved from Alabama to NC, where we met. Before Kate and I moved in together, Chloe would come over and spend the day with Red (a Rhodesian Ridgeback) and Bailey (Lab mix) at my place so she had company while we were at work. There was not even an initial squabble; they got on right away.

After Red passed away, we adopted a senior Ridgeback, Tonka, and he slotted right in with the pack too. We only had the pleasure of loving and caring for him for a little over a year before he crossed the Bridge. Bailey the Lab came down with cancer a short while later and we had to say goodbye to her. Chloe was not by herself for long; we adopted Casey, a pit bull, and, while Chloe liked being the center of attention as an only dog, she warmed up to Casey, and they could frequently be found snuggling on the sofa, sharing a fleece.



The video below is about Casey's first vet visit after we adopted her (2008), but Chloe does her best to upstage her for the camera (of course). Makes me smile (and get misty-eyed) right now.



With time, we'll open our home to another dog -- the right dog -- to be part of our family, and it will be a shelter or rescue dog that needs a forever home.

Wednesday, July 10, 2013

50th b'day NY trip Day 5: Burn, baby, burned

I have been in a heckuva lot of discomfort all day. When the labels on your meds say avoid the sun, it's not a small deal...it didn't help that I hit the energy-wall, RA-wise. At least I had a good run during most of this trip, despite skipping the injectible RA meds so I didn't get sick from them and lose almost two days of my trip to that. But that meant I was probably going to run my energy meter down to "E" soon.

I could barely function until the afternoon on Tues, and then only for a few hours out visiting relatives in Bed-Stuy before needing to pass out at the hotel.

Today I slept so hard from fatigue today that I was hallucinating and couldn't even respond to the phone ringing. I felt like every part of my body was glued down to the sofa. I have no concept of what is going on in the world.

The sun over-exposure, despite hat and sunscreen, and sun vulnerability caused by the meds, has resulted in bad facial burn/allergic reaction.  My whole face hurts and my lips got very swollen. Once that went down, it went to cracked and bleeding. I can't eat without them opening up the tears and splitting more. This is horrible. As it was very hot, I drank constantly, so I didn't feel dehydrated, so I think it's the meds + sun.

Kate got me some aloe, which is giving some relief. Out of the various lip balms I've tried, it looks like the winners that cause the least pain and give most relief are CO Bigelow "My Favorite Lip Balm" and Aquaphor Lip Repair by Eucerin.

It's taking a lot of effort to even type this; the only reason I needed to get up is that my lips started searing pain again after absorbing all of the moisture from the above balms. Now I'll try to eat some soup so I can take Aleve.

Monday, July 8, 2013

50th b'day NY trip Day 4 - big fun, lotsa sun, and a blogger happy hour

What a busy day it was. Kate was wise to make sure we only did two events per day to give me adequate rest so I didn't get an RA flare up.

So event one was lunch with my high school friend Carole and her husband Dave and their two kids at Junior's. It's hard to believe they are almost ready to pick colleges!

We walked back to the hotel and Dave pointed out a spot near the courthouse in downtown Brooklyn where just the day before some dude was shot (by someone he refuses to identify, so it sounds like a hit was in order). Kate stood at the ironic "Dead End" sign near the spot, lol.

At the hotel, Carole joined us to see the view from the Marriott and we gabbed for a bit. I got way too much sun walking to Junior's and back. I knew it was too much even though I had on sunscreen and wore a hat. My face felt really hot. Burning. Ugh.

Blogger happy hour

But forging ahead, my blogger world friends had a birthday celebration at 5:30 PM at Industry Bar in Manhattan. I didn't know much about this -- most of it was under wraps since my good friends Joe Sudbay and his partner Carlos did the organizing, along with Scott Wooledge and Michelangelo Signorile.

And what a great time it was -- they had cupcakes and I was showered with flowers from David Mixner and  blogger David Badash. So many peeps showed up! Here's a slideshow...



And the birthday serenade... (link to vid)

From Pam's 50th Birthday Weekend in NYC

Joe and Carlos took us to a tasty Mexican restaurant afterwards and after that I was spent. Hit the wall. We took a cab back to the hotel and crashed. I was so tired that everything hurt. But I was very happy. It was a wonderful 50th birthday with friends.

Sunday, July 7, 2013

50th b'day NY trip Days 2 and 3 - hot as hell

You know how hot it is in NYC? So hot that my sunscreen melted off. That you cannot possibly overhydrate yourself even if you're just sitting still. And if you're in the sun, you will fry. UV index is at the top.

So with that in mind, we had a cookout on Saturday at my uncles' house in Bed-Stuy, and it was so wonderful to see everyone. I was queen for the day, flashing tiara and all, courtesy of my cousin Julie, who turned 50 earlier this year. My birthday is actually on Monday, so it's a weekend of celebrating!

Slideshow for Saturday...



On Sunday, I was supposed to cross the Brooklyn Bridge. At 3 AM I got up to get a drink and saw that the National Weather Service had issued an alert about the heat. This is what I posted on Facebook:

I may be determined, but I'm not stupid about the bridge walk (http://ow.ly/mIUPn). Summer is usually hot, but the National Weather Service has issued a dangerous heat advisory for Sunday afternoon (snippet below, link here http://goo.gl/jCDyz). I don't want and friends or relatives putting themselves at risk of heat stroke in support of my walk! (And, of course, I can only imagine what my rheumatologist, who wasn't exactly crazy about this jaunt, would say about me crossing under these conditions!) I can always return during less perilous weather to cross the bridge.

I'll have an update with alternate plans later, such as meeting at Smorgasburg at DUMBO on the Brooklyn side of the bridge (as was the plan after the walk, http://www.brooklynflea.com/markets/smorgasburg-dumbo/).

Sun, Jul 7, 2013, 3:13 AM EDT
* HEAT INDEX VALUES... UP TO 105 DUE TO TEMPERATURES IN THE MIDDLE 90S... AND DEWPOINTS IN THE LOWER 70S.

* TIMING... TODAY... WITH THE HOTTEST CONDITIONS OCCURRING IN THE AFTERNOON.

* IMPACTS... SENSITIVE POPULATIONS WILL BE SUSCEPTIBLE TO ADVERSE HEALTH EFFECTS.

PRECAUTIONARY/PREPAREDNESS ACTIONS...

AN EXCESSIVE HEAT WARNING IS ISSUED WHEN THE COMBINATION OF HEAT AND HUMIDITY IS EXPECTED TO MAKE IT FEEL LIKE IT IS 105 DEGREES OR GREATER. TAKE EXTRA PRECAUTIONS IF YOU WORK OR SPEND TIME OUTSIDE. WHEN POSSIBLE... RESCHEDULE STRENUOUS ACTIVITIES TO EARLY MORNING OR EVENING. KNOW THE SIGNS AND SYMPTOMS OF HEAT EXHAUSTION AND HEAT STROKE. WEAR LIGHT WEIGHT AND LOOSE FITTING CLOTHING WHEN POSSIBLE AND DRINK PLENTY OF WATER.

My initial reaction:



Oh well; when you have a summer birthday and there's global warming. You need the alternate plans, lol.

Kate and I took our nephews to the NYC Transit Museum, which is nearby, and then, as I said above, went to the Brooklyn Bridge Park and stayed in the shade, which was wonderful by late afternoon.

Slideshow...

Friday, July 5, 2013

50th b'day NY trip Day 1 - travel and Junior's cheesecake!

Wore my compression socks for the trip since I was going to do a fair amount of walking and the air travel tends to make my legs swell.



Packed lots of Aleve, ibuprofen and extra meds to handle pain management. Flight was uneventful. Took a typically wild cab ride to our hotel, the Brooklyn Marriott, where the view from the room is wonderful...

On the way to NYC...learning what it's like to travel in this "new" body

So I made the decision to avoid taking prednisone this weekend since I am skipping MTX and Enbrel this week. That's to avoid being sick while on the road. Of course with the weather fronts coming in wet and wild all this week, it has been an exercise in pain and fatigue management anyway.

I packed my bag -- Kate has to do all the heavy lifting because of the limitations from my back surgery earlier this year, but we tried to pack light (ha!). I will drag a very small bag on wheels with my shoulder bag riding on that so I don't have to have that weight on my arm.

Thankfully it is a direct flight. What I cannot control is what the barometric pressure changes from the plane ride itself will do to my body. It's highly likely that my legs will swell, so I have on compression socks (how fashionable -- white ones at that!).

This is my first plane trip since back surgery and the really aggressive RA path. Now I realize what a chore it will be travel -- I have a toiletry bag just for my various liniments and wraps and extra socks. It's pathetic. And then the numerous meds (including injectibles) have to go in my carry-on. I'm wearing elbow supports and taking the knee braces (though not in the airport, don't want the hassle from TSA). Gone are the days of really traveling light.

We'll see how it goes...

Tuesday, July 2, 2013

So Long, Farewell: Today We Close Pam's House Blend - A Look Back. (UPDATED)

This was my last post on FDL/PHB yesterday (July 1, 2013).


The Blend has been a virtual coffeehouse where vigorous (but polite) political expression was encouraged on myriad topics including LGBT issues, race relations, the religious right, and gender issues. This outlet for commentary and original reporting has had a great run that has been gratifying to produce and hopefully enlightening for readers. As we close the doors today, thanks for the love, the barbs, the critics, the good (and energizing, but tiring) times.



Just imagine how I feel right now after the last week -- SCOTUS left me in a helluva lurch, let me tell you. The landmark rulings on DOMA and Prop 8 and the Voting Rights Act show just how much more activism and work is left to do.

That this court could essentially say that race isn't not much of an issue in the states covered by the VRA in this day and age is preposterous. Bouncing the responsibility to this Congress to address is laughable. I will say that, given what we've seen over the last couple of election cycles and the attempts to suppress the vote, it is time to expand that pre-clearance map, actually.

And on LGBT rights, while people rightfully celebrate the strikedown of a portion of DOMA covering federal benefits and the return of marriage rights for same-sex couples in California, the high court issued the most restrictive ruling possible for the win -- it dodged the issue of the constitutional right of gay and lesbian couples to marry. That means those of us in states with marriage amendments will have to deal with denial of many critical rights and legal uncertainties until a boatload of challenges inevitably bounce it back to SCOTUS to resolve.

Today also happens to be my ninth wedding anniversary. Kate and I were married in Vancouver, B.C. Canada in 2004. So we sit here in a state without employment discrimination protections, in a marriage unrecognized by the state.

Gee, what a time to stop blogging, you say? There is so much more left to say and do. But it's time; someone else, sadly, has to take the baton from me. As I said in my announcement post, sometimes real life -- in my case, serious health matters -- have rendered me left to focus on the more pressing task of holding down the full-time job that puts a roof over my head and health insurance to keep me going for as long as I can.

A new channel debuts on FDL, Justice For All, that will take on many of the same issues covered by PHB. My current co-bloggers  Laurel Ramseyer, Alvin McEwen and Autumn Sandeen will helm that blog.

She's not dead (yet), Jim

While the need to actually get sleep means I no longer have the time or energy to write long-form pieces or to go out to do original reporting, I will still be active on social media (Facebook, Twitter, G+). Blogging/citizen journalism, unfortunately, was not an avenue that I could carve out a space to make a living, though others from that initial class of new media bloggers did get absorbed into traditional media. Many, like myself, nevertheless, found our work ballooning into a full-time second job involving online and offline activism. For us it was unpaid or marginally supported (through ads) labor of love. In my case, it went on for nine years, and PHB made a dent in the political world of LGBT politics as new media challenged not only foes and the establishment, but our own advocacy organizations.

Some PHB history below the fold. I hope you enjoy the ride back in the time machine.

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."