stuff is cool

I changed my mind about the Chanel serum I asked for. It’s just too expensive for what it is. I have done all our Christmas shopping and I see how it can add up so quickly. I still love Chanel stuff, though.

But I LOVE Christmas shopping. I keep our gifts in our coffee table, which is also a storage chest. I like to take everything out and look at it all now and then, and I can’t wait to give everything out. It’s sappy but true: I enjoy the month I spend coming up with creative gifts more than I enjoy the 24 hours I spend receiving gifts.

This year I am especially excited about some of the goofy-cute gifts I got for my dad and for Danny. They are adorable! (The men and the gifts they are getting!) After Christmas I’ll show you what I got them

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.

In addition to the Purete Ideale Serum, another item I can’t put on Amazon is a room at Hotel Zaza on Feb 15. I’d really like an extra night at Hotel ZaZa on our wedding weekend. Friday night, the night before the wedding, the night of the rehearsal dinner. Wouldn’t Danny just have to clear out by 11 the next day, when the hairdresser comes? We could just have one small room Fri night and then move to the suite in the morning and that’s when Danny has to go away. I would like to start the day of our wedding together with Danny in quiet repose, and I think it would feel more exciting if we weren’t in our own apartment. And I know the “You can’t see the bride before the wedding!” rule, and that only applies once she’s in her gown.

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.