Sunday, November 30, 2008

'Tis the (shopping) season

I went out this evening and did my first Christmas shopping. I wouldn't have bothered, but I had a 40% off coupon for Barnes & Noble and it was only good for this weekend. Hey, the Christmas budget is tight this year. Plus I have to ship all my gifts instead of hauling them with me on the plane. I'll take whatever discounts I can get.

Most of the last three days have been consumed with trying to get my wireless router working properly. I wanted to watch some things on my computer through Netflix, but the old desk top just isn't up to the task. Too old, too slow. Not enough memory. The laptop can handle it, but it didn't want to work plugged directly into the modem. It was time to haul out the router I bought over a year ago with the laptop and get it set up. It gave me a few fits, but it finally seems to be working. First it kept quitting on me. Then there was a problem with the software. Eventually I discovered that the update on the software was bad. And I only had to system restore and re-download the software twice to figure it out. I'm still not sure why it craps out on me every couple of hours, but I now know to just unplug the modem and router, give them a minute, and plug them back in again. Whatever's happening, that seems to reboot everything. Not a great solution, but it's a two minute fix instead of a two hour ordeal. See, I can learn. Eventually.

Now that I've got the wireless working, sort of, I'm exploring the instant play options on Netflix. So far I've watched about half of Dr Who season one and one episode of Ballykissangel. My dad loves British comedies, and I thought Ballykissangel might be a good Christmas present. I'm not sure about that, although I enjoyed it and plan to watch more. Dad's got a bit of a Thing about Catholics, and I'm not sure if that would prevent him from enjoying the show or not. We come from a line of Protestant ministers (although I frequently wonder if there's not a Goddess worshiping milk man somewhere in my background), and it seems to me that no matter what the religion, you run into the same kinds of people and politics at any church. There is, unfortunately, no logic or sense when Dad decides to develop a Thing, though, so whether he'd see the universality of it is hard to say. Amazon has season one available for $25, which is just a skosh over the $20 budget I set, so more thought is needed.

He's been very unhelpful with the Christmas list this year. When I asked him yesterday he said, "I don't know, maybe a DVD." But when I asked which DVD he'd like, he didn't know. I warned him if he couldn't give me a title or two he was going to get a pack of blank DVDs. And a lump of coal for his stocking. He seemed perfectly OK with the lump of coal idea. At the cost of heating fuel this year it would be a valuable gift.

His favorites are As Time Goes By, Keeping Up Appearances, The Vicar of Dibley, and Are You Being Served. If anyone has suggestions about other shows he might enjoy, I'd be happy to hear them. I don't get BBC America on my basic cable package and the last time I checked the local PBS station wasn't playing much in the way of Britcom.

Monday, November 24, 2008

True Confessions

I've never admitted this before because, well, it's a little embarrassing. But I'm getting very fannish in my old age. My current obsession? Torchwood.

I heard about this show in passing from some British folks on a message forum that I frequent. It sounded interesting, but when I found out it was a spin off of Dr. Who, my interest cooled. (I sampled Dr. Who a few years ago and didn't like it at all. Too cheesy. Now I'm thinking maybe I didn't give it a fair shot and should try it again.)

Anyway, I'd made it through all the Closer discs on Netflix (love that show!) and needed something else to watch, so I decided to give it a go. The first disc was OK, but it didn't knock my socks off. I decided to keep the rest in my Q, mixed in with some other things. I'd had discs two and three for a couple of weeks before I watched them. Wow. Instant addict. Everything available on Netflix is now at the top of my Q.

The whole series is also now on my Christmas list if, you know, anyone's interested.

Friday, November 21, 2008

Home for Christmas

Well, it looks like I'm going to be home for Christmas. My home, in Houston. By myself. I'm kind of excited. (Don't tell Mom.) My brother and his wife can't make it to Boston this year, and I'm taking the opportunity to ditch. If we were all going to be there, I'd guilt myself into going and then really pay for it. I feel a little bad about leaving my parents childless for the first Christmas in 34 years. But then, my brother and I haven't been children in a very long time. And anyway it about darn time for me to make decisions based on what's best for me, not on guilt and parental expectations.

Mom is pushing for the two of them to fly down here for a few days and then off to see my brother for a few days. My heart sank when she told me that. I'd already started picturing my own peaceful Christmas. Just me and the cat. Make a little turkey, decorate a little tree. Get up when I feel like it and open what ever presents I might have. Listen to some Christmas music and watch a movie or something. No late night church service in the cold. No scrambling around to get the tree decorated and the presents wrapped in time. No last minute cleaning projects or extensive food prep. Something quiet and special and just for me.

At least she told my dad that they'd have to stay in a hotel here. I think Dad is mad, or maybe offended, that they can't stay with me. (This is only by inference, since I'm only allowed to talk to Dad if she's not in the house when I call or if she up to her eyeballs in something messy and can't come right then. And last week when I was slowly coming off that mad with her, Mom had Dad answer my call and talk to me for a while to get the lay of the land and find out if I'd tell him stuff that I wasn't telling her.) (Yes, we get that way when one of us gets a little too up in the other's bidness. I womanfully refrained from mentioning that this whole situation was such a flashback to her relationship with her mother. I thought an imprudent "Your acting just like Grandmom" could blow a perfectly reasonably "U wuz out of ordr and I haz a mad" into a full on cold war, which I really didn't want to have to deal with.

She called today and said that he thinks the whole thing is going to be too expensive and he doesn't want to do it. And now she's sad and hurt. The guilt and the vision of my own little Christmas are battling it out right now. Which one eventually wins will depend on if Mom leaves it alone or if she keeps pushing. If she keeps pushing I'll end up with three adults in a one bedroom, one bath apartment.

If they stay with me they'll have to take my bed and that puts me on an air mattress in the living room. No privacy, no practical way to take a nap during the day. And the Christmas tree will have to be in the living room too, which makes things just that much more crowded. The other option, which I'm afraid Mom might push, is for me to stay in my room and for one of them to take the air mattress and the other sleep on the couch. Now I've taken a fine nap or three on that couch. But anything over a couple of hours is seriously uncomfortable. I would not recommend it. Option Three would be to get them a double or queen sized air mattress, again in the living room with the tree, leaving the main living space crowded in the extreme. We might need to drag a folding table and a comfortable chair into my room so we can play a game or something without feeling like we're tripping over everyone's stuff. I'll have to clean out my little office space- maybe find a way to hang a curtain- so that they can have a private dressing area that's not my bedroom or the bathroom. Because, frankly, I don't share that bathroom well. And three adults taking their showers one after the other (with pauses in between to try a win back a little hot water), and facial cleansing and moisturizing, and painting routines, and teethbrushing, and hair drying and fixing and fluffing.... it all gets to be a bit much. And unless we want unsightly messes on the carpet, we should probably make sure that the cat gets a private moment in there with his litter pan now and then, too. Four days of that would, in the immortal words of Oprah, drive me "foo foo crazy!"

I'm crazy enough, thanks.

Saturday, November 08, 2008

moving on

I've calmed down a bit since my last post. The fact that I haven't spoken to my mother yet has probably helped. I'll talk to her tomorrow or Monday, if I feel up to it.

The Remicade has helped a bit. I rolled out of bed this morning and creaked to my feet and then realized that my knees weren't screaming for mercy. Cool. Other unfortunate symptoms are acting up, and the knees didn't stay happy for long, but I'll take what I can get.

I called my GI yesterday to run the prednisone idea past him. In one breath he agreed with me that it was a bad idea, and then said I should do it anyway at the full original 5mg/day she prescribed, not the fall back 2.5mg. I tried calling the GI my GP recommended after that, but I guess they close early on Fridays. I'm going to try again on Monday to see if I can schedule an appointment for a second opinion. Not just about the pred, but my whole treatment program. Obviously, it's not working, and I'm not willing to dink around any longer. The short term disability ends Nov 30, and if they approve the long term disability I absolutely have to be back to work by the end of February or I'll lose my medical insurance. That can't happen. Also, I'd just like to feel good for a change.

NaNo is coming along well. I'm behind the ideal word count, but I'm making nice progress on the story, and I've discovered some stuff about a couple of characters I didn't know before, so I'll take it. Back to the writing.

Thursday, November 06, 2008

what I almost said to my mother- but didn't

Tonight I came as close as I ever have in my life to telling my mother to just shut up already. As you may have noticed from my last post, I didn't have the best day today. I warned her when she called that I was upset and in a bad mood. Instead of taking that as a request to lay off, she got offended. And then she went into full on nag mode.

About a month ago I made the huge, huge, God-why-did-I-open-my-mouth, mistake of saying that I was so frustrated with my medical care here in Houston that I might consider going up to Boston for treatment. She jumped on that with both feet, and that's all I've heard about since. She's gone so far as to talk to her doctors and hit up total strangers for referrals.

The last thing, the absolute dead last thing, I want is to move in with my parents for a couple of weeks. (Or months.) I'm hanging on to the last fraying thread of my independence here. I need my peace and quiet. As I said before, there is nothing peaceful or quiet about my mother. Living with her again would drive me straight up the wall.

Anyway, she started nagging me about calling other doctors and setting up appointments. She wants me to call someone in Boston for a referral in Houston. She wants me to call this doctor, and this doctor, and this doctor tomorrow and get information and schedule appointments. Do you want me to call for you? You should be in Boston. They have the best doctors in the world. Boston Medical Center, Mass General, Beth Israel Deaconess, blah, blah, blah. Have you called them yet? Are you on the phone with them now? I don't know why I'm even talking about this with you. I know what you're like when you dig in your feet about something.

Shut up, shut up, SHUT UP.

She very nearly had me in tears before I finally said "I just can't talk about this anymore." I'm so overwhelmed and stressed out right now. I've hit my limit. I can't cope with anything more right now. So please, Mom, just leave me alone.

banging my head against the wall

I went to the Rheumatologist this afternoon to have some blood work done and discuss my current meds. I'm a mess right now, and based on experience I don't believe I'm going to get better on the Remicade/methotrexate cocktail. I want off the MTX, and I want to explore other options, like Humira or Cimzia. When I brought up the possibility, she told me that I hadn't been on the MTX long enough at the current dosage and that she didn't want to raise it yet, but that she'd raise the dose before she'd consider taking me off it. And then she offered me prednisone. Prednisone! The evil step-mother of autoimmune treatments. She wants to put me on 2.5-5 mg of the stuff indefinitely. As in forever. And oh, by the way, I should also go on another IV drug to stop the pred from melting my bones. (Remicade, for those not in the know, is also an IV drug. Typical dosing for Crohn's is one infusion every 8 weeks. I'm currently on one infusion every 6 weeks, and she's talking about upping my dosage on that, too.) Side effects of pred (more common with high doses, but also possible with long term use) include weight gain, cataracts, diabetes, osteoporosis, Cushing's disease, and insomnia. I still haven't managed to clear the thrush from the course I was given in the hospital a year and a half ago, either. And she wants me to go back on that crap? She also wants to consider putting me on a second chemo drug. (MTX is a chemo drug.) She wasn't clear on whether that's in addition to what I'm already on or to replace the Remicade. I'm pretty sure it's in addition. More chemo. That's really going to help my fatigue. I've got to get a new doctor.


Tuesday, November 04, 2008

Peace, perfect peace, with loved ones far away....

My mom came down for an IBD conference this weekend and flew home this morning. I loved having her, but I have to say I'm glad she's gone. I might have mentioned, oh, about 800 times, that Crohn's saps my energy. I'm tired all the time. And my mother, bless her, is not a restful person. A lot of it is guilt. She wants to be here helping me all the time but it's not possible, so when she's here she wants to DO STUFF for me. She wants to be HELPFUL. Never mind that I don't particularly want done any of the stuff she's trying to do. Or that what would really help me is if she'd quit banging around in the kitchen or vacuuming the living room and let me take a nap.

Part of the problem was my expectations, too. I was so excited that she was coming! I hadn't seen her since Christmas. I wanted to take her to the quilt show, and go to the movies, and get our nails done, and maybe go clothes shopping. I really wanted to take her up to the Renaissance Festival, but I thought it might be too much for me, and I didn't want to stress her knee. (She had a knee replacement last winter.) What did we actually do? We went to the conference, and she had to drive us home when it ended at 3:30, because I was too tired to drive. We went to Whole Foods so that I could pick up a few groceries and she could see what kind of gluten free stuff they had. (Some really good stuff, btw.) She helped me pick out new frames for my glasses. That's it. No movies, no quilt show, no nothing. I drove her to the airport and voted this morning, and now I feel like someone hit me with a hammer. This sucks.

I did manage to write a few words for NaNo. I'm up to 1300-something. I want to get a few words on the page today, and hopefully 1500-2000 words tomorrow between naps. Thursday is Remicade and the Rheumatologist, so I don't expect to get much done then. I'd like to get caught up by the end of next weekend, but we'll see. I'd also like to feel like a million bucks, and we've all seen how successful that wish has been.

I think I'll go take a nap now.