stuff is cool

So, with the wedding behind us, life seems a little strange. Certainly not empty, but lacking that certain excitement. Then again, I do not miss the stress and pressure of planning a wedding, and I hope my family finds me more pleasant company than I have been.

Being married to Danny hasn’t really changed our relationship much, at least in the day-to-day. But we both find a certain giddiness in referring to each other as “husband” and “wife”, slipping it into interactions with strangers as often as we can: “My husband usually handles in Internet stuff in our house. . .” while on the phone with SBC during a DSL outage, etc. etc.

I try not to dwell on things I forgot to do at the wedding. I lament that we didn’t take more photographs posed by Rice-y things at Cohen House. I REALLY regret not getting a single picture with any of my aunts. I wish I had made a short speech thanking my family for all their love, help, and support. I wish I had spent more time with my friends. And so on. But it was an incredible party, and we all had the most fun we’d had in years.

These days, I am working on being a housewife. Many of you may not have heard that I decided not to return to my writing job full-time. After months of medical leave, I decided to stay on in a diminished capacity, working only part-time, and from home. This frees up time to continue to focus on my health, which is still troublesome. I am switching to a new infusion in March, and hopefully it will work just as well as Remicade, but will also help get rid of the psoriasis that came out all over my skin in January. Methotrexate and lots of makeup helped hide it at the wedding, but my legs and feet are particularly afflicted. Since I normally always wear jeans anyways, even in the summer, this isn’t a huge concern, though I have had to start wearing leggings if I want to wear a dress. Sometimes I even just wear jeans with a really casual dress. No biggie, and kinda cute. I can’t walk much or stand for very long, because not only is it hard on my joints, but the sores on my feet can’t take it.

On top of that I have been plagued by heartburn of all things for sveral weeks now. I have never experienced heartburn before! It is a strange feeling. I picked up some Prilosec at the store yesterday. so today is Day One! According to the commercials, I think I am supposed to be at a local carnival. In two weeks I expect to be watching a NASCAR race from the roof of an RV, or hang gliding. The directions don’t say, so I’ll just stick to my usual activities and hope the Prilosec works just as well.

Though my back is certainly MUCH better than it was those awful months between April and December, I still get worrisome pain in my hips and tail bone almost daily. I am going to see a Pain Management specialist in April, and hopefully she will have some answers that will reduce both my pain and my intake of hydrocodone. I was supposed to see her last week, but mistiming in the transfer of my records from the other doctors meant I had to reschedule, and the wait is unfortunately long.

In the meantime, I take it pretty easy. I still read voraciously. I still revel in my candle collection.

And thanks to my obsession with all things fragranced, I am going to start a new website with the help of my clever computer-savvy husband.

I am still working on it, trying to put enough content up for it to be a worthwhile read when launched.

It will be all about all kinds of fragrance, including perfume, room spray, candles, and laundry detergent. It will be reviews of products, hints about fighting tough odors, tricks to make your home smell just the way you want it to, and a general celebration of the wonderful aromas of life. Since the fragrance industry is so huge right now, I will never be without something to write about. From aromatherapy dish soaps to scented toiler paper dispensers, our culture is almost as obsessed with fragrance as I am. We already have the domain, and I am playing with the design. i am glad I stumbled onto an appropriate domain, because so many have been snatched up by people on the outside chance they can sell it to someone who wants it. The one I originally wanted was taken, and up for sale for $1500!

I am excited about this new project, which combines what I love and what I am good at. It is exactly the sort of project I need to find purpose in the everyday. It is far better and more satisfying than writing material for other people. I had grown more than restless with my work, and desperately needed to write for myself instead of others. I will still work on projects for others, of course, for a living. It is still a great way to learn new things and stay in touch with the world.

I hope to even do some freelance work on my own, for friends and acquaintances who need some copy, but don’t want to pay the high cost of hiring an agency.

With all that, it is a pretty full life. Add to that the mountain of wedding gifts to sort through, enjoy, and write thank-yous for, and our apartment is full as well.

Danny is so precious. Just this morning he had to dash back after leaving for work, because he had forgotten to put on his wedding ring. We both take ours off for washing and sometimes sleeping, because they are a bit loose for the time being, and hard to get used to. But they have a safe place of honor in the antique pewter ring holder I keep by my bed.

As I write this by joints are beginning to ache, so I may not make the errands I had planned. I also have to be careful not to type for too long, because of course it bothers my wrists.

But reading taxes none of my joints, and so I am turning to my books. Right now I am reading a book about the daily life in London in 1700. Turns out it is not much different than it was in 1660, as i read a similar book abut daily life in The Restoration. But I still love to study it.

Well, I hope that entry wasn’t too dull to read. Just wanted to let my far-flung friends know how things are going. Love to all, and please, please, come for a visit this Spring, any of you. We have so many fun hostess tools now, and I want to use them! I want to be MARY T!

Yesterday was a looong day at the doctor’s office as I received my first IV of Remicade, which took 3 hours, and then an hour’s worth of steroids on top of that.

I was miserable all weekend, but Sunday was the worst. When I woke up on Sunday, I warned Danny through gritted teeth that it was going to be a “difficult day.” And it was. Poor Danny.

I thought the worst of it was over last night, because I really did start to feel better, thanks to the steroids. Danny was all smiles and I was relaxed and comfortable at last.

Until I woke up around 6 this morning in the worst pain yet! Not just my back, but every inch of every bone was aching. I was trembling and sobbing. I gulped down two vicodin (the doctor said it was ok) and Danny held me till I stopped shaking. He stayed home with me for the first few hours. During that time, I spoke to my doctor’s nurse and they prescribed a heavy-duty painkiller patch. The narcotic was so strong they weren’t allowed to just call in the prescription to CVS. My sweet Danny drove all the way past the Med Center to Dr. Rubin’s office pick up the written prescription, then had to go to 3 CVS pharmacies before he found on that even carried the patch.

The patch takes 12 hours to start actually reliving pain, and I put it on at 8-ish tonight. Hopefully it’ll kick in in time enough that I won’t have another morning like this morning. The patch stays on three days, then I put on a new one. I put this first one on the inside of my right arm, because I had no idea where the best spot would be. This might even be the best spot. I already forget its there. Hopefully, it’s quietly doing its work this very minute.

Thanks for your well-wishes.

On Thursday I am going to the anointing of the sick mass at St. Cecilia’s, my family’s church. I gotta cover all the bases!

Oh, and can I just say, the lacy cravat Danny wore at Halloween showed the world how much he loves me, but his actions in the last few days in particular show me that he might love me even more than I thought he did. Which was lots already. And I love him with all my heart. I wish I could repay him. I’ll spend my life trying.

So, this big news and deserves its own post. Danny was gonna write about it, but I think I’ll go ahead and beat him to it.

According to the website: “REMICADE is an advanced treatment that has been shown to have substantial benefits in patients with a number of inflammatory disorders involving the immune system. REMICADE targets specific proteins in the body’s immune system to help control the development of inflammation, significantly reducing painful symptoms in diseases such as plaque psoriasis, rheumatoid arthritis, psoriatic arthritis, adult Crohn’s disease, pediatric Crohn’s disease, ulcerative colitis, and ankylosing spondylitis.”

This drug is extremely expensive (we’ll meet our deductible with just one dose.) So, of course, the insurance companies hate covering it. Therefore it’s difficult to get approval for it. For my case, it took over a month of red tape and begging and numerous frustrated phone calls and waiting. During the wait, my condition definitely deteriorated, making the need for the drug all the more immediate.

I have tried almost everything else, including Methotrexate, Enbrel, and toxic amounts of steroids (in the form of Prednisone.) My doctors and I knew Remicade is absolutely necessary. But BCBS had to be convinced.

Well, last week, my sweet Danny took the bull by the horns and started making phone calls himself. Next thing I know, he calls me from work to tell me I have been approved and can have my first infusion as soon as I can get an appointment! GO DANNY!

My first infusion is Monday morning at 9. According to the site, it goes like this:

Three Steps of the Infusion Process

The infusion process can be summarized in three steps:

1. Preparation: When you’re ready for your infusion, a healthcare professional — such as a nurse — will weigh you to calculate the dosage of REMICADE that’s right for you. The nurse will also check your blood pressure, pulse, and temperature before the infusion begins.

2. IV Placement: The nurse will then insert a narrow IV needle into your arm after you have been comfortably seated. When the nurse places the IV in your arm, you may feel a slight pinching sensation, but only for a second. The IV will be held in place on your arm with tape, and the infusion will begin. If you are not comfortable at any point during the infusion, let the nurse know.

3. Relax: During your infusion, the nurse will check on you at regular intervals. During this time, you can relax, read a book, catch up on some work, watch TV or a movie, or listen to music.

It sounds just like getting steroids, so I will be familiar with it. Hopefully the room won’t be full and Danny can sit in the recliner next to mine.

The side effects of the infusion include flu-like symptoms, nausea, itchy skin, and, among other things . . . painful joints!? Huh?

But the site says I should start to feel relief from my pain in as little as two weeks!

I take these infusions at intervals: one on Monday, then two weeks later, than 6 weeks, then every 8 weeks. I think. I know eventually it is every 8 weeks.

This could be what turns everything around. Since April, as you know, my arthritis has been attacking me with unprecedented evil (in my personal history of JRA.) Perhaps Remicade will win.

I have to wait just a little over one more day . . I have been especially uncomfortable this week, party because I had to stop taking my Enbrel in prep for the Remicade, and when I don’t take Enbrel, my pain gets intense.

But Danny has been so, so amazing. When my back is especially bad, I lay on my side, and he spoons me, and the heat of his body helps sooth my back and my sore arm, and he helps me breathe right and generally calms me. Plus, just having him with me helps me feel better.

When we say our vows, “in sickness and in health” may just make us start laughing. Danny has proven himself to be true to those vows, even before we have taken them. I love you, sweetheart.

I have expensive tastes, sometimes. Primarily I have a weakness for Chanel. I have bought tons of Chanel stuff through Ebay. I LOVE Chanel skincare products but Amazon doesn’t carry everything Chanel, so my Amazon Wish list is inaccurate. In fact, some of the Chanel things on my Amazon Wish List have now become “unavailable” through Amazon. Since I know my family reads my blog, I’d like them to know that I really, really want this:

It is the Chanel Purete Ideale Serum. Chanel does lots of anti-wrinkle stuff, but this is more suited for my skin, which is oily and blemish-prone. Of their Purete Ideale product line, I already have the toner (Oil Control Purifying Lotion) and the T-Mat Shine Control. I don’t really want anything else from the line. Just the serum. Thanks.

On another note, I have had a MISERABLE week of very all-consuming pain. Tonight I was stricken with an attack of back/chest/arm pain about an hour and a half ago but the meds finally kicked in just now. I have my first infusion of Remicade on Monday, and, according to the literature, I should feel relief in as little as two weeks. That will be the best Christmas present ever. Relief. Simple relief.

But the Chanel Purete Ideal Serum would be nice, too.

Let me set the scene for my life, every week day, from morning till night. Sometimes I never stray further from the bed than to go to somewhere just a few steps away: the den or the bathroom or the kitchen.

I am propped up in bed. Two candles are lit: vanilla and autumn leaves. the TV is sometimes on, sometimes off. Books are stacked by my bed, at least 10 or 12 of them. The bedspread is blue and white like Italian Blue china. I sip Crystal Light green tea. Gigi is under the bed. I type away at my laptop. I make phone call after phone call: to doctors, to work, to clients.

It all sounds relaxing, but all the candles and blue and white bedspreads in the world cannot hold back the stress when it boils over.

Work and wedding planning and health press on my fragile body from every angle. I don’t eat, and when I do, it’s not much, or it doesn’t stay down, because my stomach is tied in knots almost all the time. Danny frowns if h is here to witness it.

My hair is always in a ponytail, because it has become long and ragamuffin, but I am too afraid to go anywhere alone these days, even to get a haircut.

My veins are showing. I am starting to look like my bedspread.

I have had such a stressful day with my job coordinating the magazine we do for a client at work. Many tears on my part. I am not very professional and I take everything personally.

So my mind wanders when I am trying to calm down. The Bourne Identity is on in the background.

My mind wanders to Harry Potter. What Death Eater could Clive Owen play?

On another note, absinthe has returned to the United States. A trip back in time. www.drinklucid.com

I need to stay as lucid as possible. Best stay away from the Green Fairy.

I must venture out to go to my mom’s to pick up some thank you notes she ordered for me. In ten minutes I’ll leave, I tell myself. Ten more minutes of safety, and then I have to go out there. Alone.

Ten more minutes.

Today was the long-awaited visit to the neurologist, to try to get to the bottom of some troubling symptoms that have popped up in the last 6 weeks on top of my back troubles. Also, in the last 2 weeks, I have developed constant neck pain, which leads me to suspect the arthritis has moved up.

Today I had to do some simple memory and motor tests. Danny was with me the whole time, rubbing my back and neck, holding my hand, and basically keeping me together even when I wanted to fall apart. I have to get another MRI and an EKG (or something) to rule out the possibility of seizures. I also filled about a dozen vials of blood today. I am really confused by all the possibilities and all the talk, and I wanted, as usual, to just be told “Oh this is a classic case of ___ easily solved by ___.” But that never happens.

I feel frustrated and dismayed, but when I get really, really upset, I think about what my dear friend Kelli went through with her Lymphoma, which she BEAT, and I gain a little strength.

(My face looks red because it was hot outside aaand I’d had some Greek wine.)

Danny is also my biggest cheerleader and my rock. He was by my side all morning, and practically held me up. I know you guys think the French nobleman costume is an amazing sign of his devotion, but the truly ugly times, when I am sobbing and scared and we don’t know what’s wrong with me, Danny is right there holding my hand, smoothing hair, and generally making sacrifices left and right, really showing how truly he loves me. And I don’t know how I can ever repay him, but I have a lifetime to try.

So, I dabbed a little of the Paperback fragrance on today. It smells very manly, but it does have a bookish aroma. Hard to describe, but I keep sniffing my wrists so I must like it. A very wintry scent. Carrie, don’t buy it for yourself. That’s a gift coming from me!

This morning at around 5:30 I awoke with that horrible horrible back pain thats been threatening all week. I spilled an entire bottle of pills while rooting around on my bedside table. But I didn’t care because I was half asleep and in agony. I took my vicodin and soma and lay flat on my back. Gigi jumped up on the bed begging to go out (we think that’s what she wants, but who knows) and woke danny, so I told him I was suffering, and he held my hand and we both dozed off until the alarm went off for him to get up for his last day at his now offcially old job. He’s in Austin for the weekend and I kinda wish I had asked him to stay with me.

He offered but I didn’t want to keep him from his tournament. He offered again this afternoon when he got home from work, and again I said no. I was feeling ok at that point, but by 5:30 this evening I was in severe shot-in-the-back pain again and I called him in misery. I thought I would be ok on my own, but now I am not sure. I have to try. Just one night by myself and then I can go stay at my parents. I guess my meds aren’t working as well as they have in the past because I have to take them more and more often. This afternoon around 3 I was doin’ ok, in pain, but the dull achy pain. Sigh. Now I have to keep taking painkillers to even be able to breathe comfortably. I miss my Danny. Gigi will have to take care of me tonight. I am glad she’s learned to jump onto the bed on her own, because I can’t lift her and I want the company. She’s kinda skittish around me because I cry out in pain sometimes out of frustration.

Talk about frustration. I saw the orthopedic specialist a month ago and have had no news. I have called at least twice a week, leaving urgent messages, and no reply. As soon as I am officially on Danny’s new job’s health insurance plan (which should be soon) I am going to start aggresively seeking out answers again. Hit me with any test. I’ll see as many doctors as it takes. I can NOT have this happen in February!

Wow, 8 already. Maybe the night will fly by. I will probably go to sleep early if I can get comfortable enough. I have to bill another ten hours for work if I want to make my bonus, so hopefully a full day in bed tomorrow will be useful. I don’t think I’ll be billing any more hours tonight.

All my back pain posts sound the same. Sorry to be such a broken record, but my life feels like one.

My mom gets home from London tomorrow!

The orthopedic specialist was supposed to be presenting my case to other specialists yesterday, because he was perplexed by what he percieved on my MRI as swelling in my spinal bones (not the joints, the bones themselves.) I called yesterday afternoon and the nurse had no information. I will call again this afternoon, though she said yesterday “If you haven’t heard from me by the end of tomorrow don’t think I have forgotten you!” meaning, to me, likely I won’t hear from them until next week. I have searched for information about bone swelling and found dozens of different causes. I can’t diagnose myself. I am really getting sick of waiting for answers, but I feel like I am close. Maybe it’s because I am preoccupied with my back, but today it feels strained and tired more than usual.

Meanwhile, EXCELLENT news came yesterday: My friend Kelli’s lymphoma is in remission! She’s still got several weeks of chemo to go, but things are certainly looking bright! Just last week she and I were talking about how bleak things seemed, and now this great news came! I know it doesn’t really seem real for her, especially since she still has to do chemo, but I was bouncing off the walls last night and crying. Just a week ago I cried in Danny’s arms because I was sad and anrgy and scared for her, and now I was crying because I was so happy. It’s so wonderful!

Well, I knew it would happen sooner or later. This is my 6th (7th?) spinal flare since April. I have had at least one, if not two, IVs of steroids each time, because it’s the only thing that will make the swelling and pain go away. Today, the doctor finally said I could no longer tolerate any more IVs. It’s too toxic and dangerous. Oh, I am still on steroids, but the puny, slow-working “dose pack” of pills that takes 5 days to administer completely. Not the same as the magic hour with the IV drip. Oh well. I don’t like how fat I have gotten since April. I can’t blame it all on the ‘roids, because I also like candy WAY TOO MUCH, but my face is definitely puffy and I am at my largest ever in my life. SUPER. Hence, my new snack friends, carrots and tomato cherubs.

It’d be nice if I could use that treadmill of mine . . . but I can’t put stress on my spine. I have got to get out of this cycle! I see the specialist on the 17th, and my fingers are crossed that he has an answer, any answer.

I have noticed that over the past few months, whenever I have an arthritis flare in my spine or, more recently, a wrenched and swollen toe, I always have horrible breakouts. Normally my skin is pretty much perfect. I am obsessed with taking care of my skin. I have a strict skincare regimen and I enjoy my nightly ritual of removing makeup, washing, toning, and moisturing with an oil-free, salicylic acid moisturizer. I occasionally wear an oxygenating mask. So when I break out, it makes me try to figure out why. And there is a definite pattern. It’s not related to my girly cycle. It’s when something is inflamed.

Last weekend I broke out so bad I had pimples on BOTH of my EYELIDS. They are gone, and the monster on my face has started to go away at last. But I really think there is a connection. As soon as my arthritis starts to flare, my skin goes to hell. I haven’t been able to find anything online that explains it. I haven’t looked into it that much, because there’s probably not much I could do about it. But it’s an interesting (and damn annoying) phenomenon.