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...

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...

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.