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.
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).
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.
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.
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...
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.
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.
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...
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.
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.
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.
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. 
