stuff is cool

Exactly 9 days ago, I was prescribed Zyrtec to relieve the itching of my mystery rash (probably psoriasis). The prescription cost me a whopping 71 dollars for 30 pills. Today I drag my pained, leprosy-looking body to explore the CVS across the street, as I do almost every day, desperate to find some sort of cream to relive my itching. Horrifically, there, in a glorious “FU” display: “PRESCRIPTION STRENGTH ZYRTEC, NOW OTC!” 30 pills cost fucking $18.99.

CAN I CATCH A DAMN BREAK? Like I have money to throw around with a wedding three weeks away. On top of that, on MONDAY I ordered some turmeric supplements because I have read numerous accounts of miraculous healing for psoriasis sufferes. I made sure to get *next day delivery* so I could get it in my system asap. It’s now FRIDAY. No delivery. Next day delivery MY ASS. I want to explode.

So, for the third day in a row, I have a good violent cry and scream at God. I hear about people who lose their ability to walk or get terminal cancer in every single organ, and people admire them saying: “She’s sooo brave, never once did she ask God why she was suffering.”

Well, I am no angel. I ask why. WHY. Why am I crippled one day, just achy the next (and achy is no picnic.) Why do I cry out in my sleep every time I toss and turn because it hurts my bones. Why am I tormented by anxiety and depression. Why am I COVERED in disgusting itchy welts of bright red terror, all the way from the bottom of my feet to my very scalp? I limp because the bottom of one foot is really painful.

My “most special day” is rapidly approaching and I am falling apart. And about to have a epic nervous breakdown.

Zyrtec, you are the last straw.

My recent obsession has been collecting Yankee Candles. I recently discovered a treasure trove of rare and discontinued scents on Ebay, but cannot afford to indulge as I would like. Some are selling for upwards of 80 dollars!

My current rotation goes between store-bought Mediterranean Cypress, Vanilla Cupcake, and Fresh Cut Roses (that scent will be present at my wedding by strategically placed candles to enhance the fragrance of the real roses on display.) I frequent the store so much I probably should consider working there.

I think I am very much calmed by soothing fragrance, and it is one of the “tools” my therapist encourages me to enjoy when I need to calm down and be at peace.

When spring officially comes I look forward to Yankee Candle Greenhouse scent and Island Spa. Both would make lovely, inexpensive wedding gifts, incidentally.

But that’s neither here nor there.

My NEW hobby ties into my love of history. I should like to collect prints of the portraits of my favorite historical figures. Due to being an Anglophile, they are all Lords and Ladies, Dukes, Duchesses, Kings and Queens.

I was so thrilled and lucky to come across an immediately recognizable antique print of an unidentified “Baby Stuart” on a trip to Belleville, TX at Christmas time.

A very old rendering identified at Henriette Anne that is basically the exact image I posses, only mine is, of course, a print dating only to the 19th century:

Who would have guessed I’d find such a treasure in a small Texas town? My beloved Danny bought it for me, to go along with my beautiful portrait of Mary, Princess Royal, sister to the great Charles II.

She looks so sweet at the tender age of preadolescence. My mother presented me with that portrait after she returned from her trip to England. To see the real painting in person would be a dream come true, but really, to see where they lived and died would be sublime.

I love the portraits because I admire the people.

The baby’s identity is vague. Some say she is Henriette Anne of England, daughter of Charles I and sister to Charles II, raised in the French court and married to the Duc D’Orleans, the cruel brother of the Sun King. I have a special place in my heart for her, if that is indeed the child in the portrait.

My research suggests that the child is in fact just a young Mary, Princess Royal. EDIT: No, I am now convinced the portrait of the infant actually depicts James, Duke of York, later James II of England. Either way, I greatly admire the entire House of Stuart.

My point? There are other ladies and gentlemen I wish to add to my eventual portrait gallery, starting with the rags to riches Emma, Lady Hamilton, the great love of Lord Nelson.

I have long admire Nelly Gwynne, one of many mistresses to Charles II, but hands down the most charming and down-to-earth and beloved by the people. However the only portraits i could find online of her had in in a state of undress, and since this is a family blog, I refrained from sharing them here.

Yes, I have plans to seek out prints of portraits of all these illustrious royals and courtiers. They are my “celebrity obsessions.” No Britney or the Olsens or whathave you. Historical figures who lived scandalous, merry lives full of intrigue who managed to outwit so many plotting against them. They are my inspirations.

I love history, for it is peopled with incredible people, flawed nonetheless, who weathered their stormy lives with dignity not seen in decades. For some reason British history draws me most. I owe that passion to author Karleen Koen, who I am excitedly looking forward to acceptingly her invitation for coffee and chatting history, once the wedding wildness has died down.

But a half hour ago I was tormented by my ever-present, seemingly worsening rash, and I was lost in tears. I focused on what I love: history, and it got me out of the terrible feeling.

Well, lots has gone on since my last post, and some of you have begged for an update. Now that the holidays are over and the drudgery of work resumes, I know we all need distractions from work more than ever!

1) Remicade

My back pain is still a major problem. My spine appears to be fully inflamed, from my neck all the way down. Sleeping is still difficult, as is moving around in general. The good news is that I have had two full doses of the new drug remicade that is supposed to strop the progession of damage and increase my mobility while alleviating the pain. Doses are gived in IV drip that takes a few hours. Danny takes off work to be with me, which makes him even more a hero to me than he already was.

I am starting to see improvement, and hope to keep getting better so that by the time the wedding arrives, I will at least be able to boogie.

2) Christmas

Another wonderful Christmas, though it seems we have had to abandon most of my childhood traditions for new ones. It takes some getting used to.

3) SLUMBER PARTY!

I was feeling ambitious and invited my 3 cousins over for a slumber party a few nights ago. We baked red velvet cupcakes with homemade cream cheese filling (the way it baked itslef into the center was amazing). Then we pampered ourselves with mud masks, even Sammy. We played High School Musical Mystery Date, and Sammy was the winner with a date with none other than Troy himself. I must include some pics here, as it was so much fun:

The children practice being beauticians:

We look mahvelous.

Christopher gets attacked by ZOMBIES!

Mystery date was frustratingly difficult to assemble, but worth it.

I felt like Supermom as I got each child showered and ready for bed, and was able to convince them to split just one cupcake for their bedtime snack. They all climbed into my bed to fall asleep, and then I led their sleepwalking little bodies into the guest room. I think pretty soon they’ll be too grown up for all 3 to fit in the guest bed!

4) Happy 2008!

We rang in the New Year with the Frosts. Much alcohol was consumed. Mostly by Danny. YIKES!

5) Biggio Escapes

My cousin Sammy got a new puppy yesterday. he is a stray who appears to be a long-haired terrier of some type, but he’s so skinny from being on the streets that we can’t tell what he’ll really look like yet. His name is Biggio and he’s estimated to be a little over a year old, I think.

Well, little Biggio likes to bolt out the door any chance he gets, and he got that chance yesterday when little Christopher left the door open when he went out to the car for some baseball gloves. That dog TORE out of the house and down the street with my entire family in pursuit. Somehow I gained superhero abilities, because I was so worried for that puppy’s safety that I ran top-speed after him, pain shotting though my back every time my feet hit the pavement. My aunt Michelle and I cornered him, and the others arrived and fanned out in a tactical position. Biggio made a break for it and I did something I somewhat regret.

I tackled him to the ground. I literally laid out on some stranger’s driveway, shoving the poor puppy into a car tire and then basically landing on him. It hurt my back so bad I screamed, which scared the poor dog even more. I was still holding onto him and calculating whether or not I would ever be able to walk again when the rest of the family surrounded me, recovered the dog, and got me off the ground. I took pain meds when I got home and sat on a chair with my back against a bag of shoes, which happens to be very therapeutic, amazingly enough.

From now on New Years Day 2008 will be known as the day Noonie tackled Biggio. I could barely walk after that, and last night was pretty miserable, but I’ll be damned if I ever let anything bad happen to a puppy.

I also chuckle as I think about how we ran around the neighborhood screaming “Biggio, come back! Biggio, STOP!” Neighbors might have thought Craig Biggio himself was running for his life from lunatic fans.

6) Rash in the New Year

And now I am here in bed, back sore, a bit feverish, and covered in that same damn rash that got me a few weeks ago. I didn’t think the rash is associated with the chase after Biggio, because it started to appear before that. But when I had this rash before, we thought it was an allergic reaction to Percoet. I went off it, the rash went away, and so did the flu-like symptoms. But now the rash is back, and it can;t be blamed on Percocet. So I go to the doctor tomorrow to get to the bottom of it.

Which brings me back to #1: It may be a side effect of Remicade. Grrrreat.

Anyway, here’s to 2008, the year I become Mrs. Daniel DiPaolo!

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.

I love the Intarwebs. It’s a Series of Tubes. I just sent an Internet the other day. Ok, enough Internet jokes. Here’s the thing. I love that my friends, some originating back as far as middle school, can be cyberstaking me from across the country for weeks and then come out of the blue and send me a message that says “hey man, I hear things are rough, and I am thinking of you” and, to be more specific, let me quote her: “thinking of you - in a good way - but not a lesbian good way - just a genuine good will good way.”

Thank you, Steph. Our Johnnycake caricatures hang near each other in the theater at SJS, and clearly, the Internets keep us near in our hearts as well. I miss you.

Props to Jen, too. I may speak a bleak streak sometimes, but I know in my heart I have a loving family, adoring fiance, and a coterie of devoted lifelong friends, and I am, deep down, happy.

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.