webgrits

Infusion #2: Fourth time's a charm

When your first nurse refuses to even try to start your IV and calls in two other nurses, you know it's not going to go well.

When the second nurse tries to tell you that it takes a little while for your veins to get better after prednisone and you explain it's been 16 years, you know it's just going to get worse.

I wouldn't mind if they just stuck me and, if they didn't get a vein, pulled the needle out and stuck me somewhere else. What I mind is the digging around my arm to try to make the uncooperative vein stay still. I also mind that, when I tell the nurse to stop, she keeps digging the damn needle into my arm!

By the time the third nurse stopped the third failed attempt to get a vein, I was crying.  Not just a little misty-eyed sadness, either. I was sobbing, tears streaming down my face. I'm usually a tough cookie, but I did not have the patience for it Friday. My poor brother, who came with me so the hubby wouldn't have to miss more work, finally calmed me down. I kept wishing the nurse I had last week was working.

On the fourth attempt, we just gave up and went for the wrist. My vein in my wrist is really good, but I try to reserve it for last resort. I used to have a really good vein in my left arm until I let the nurses stick it every time they needed blood or started an IV. Now it's so scarred we can't use it for anything. I don't want my last good vein to end up the same way.

It took 40 minutes to get my IV started.

Once the IV was started, things were much better. My brother and I watched Fox News coverage of McCain's VP choice (AWESOME!) and an A&E documentary on Depression-era gangsters. My brother and I are both fonts of useless knowledge, and we spent most of the time pointing out trivia about the various gangsters before the documentary brought it up (the Lady in Red really wore orange).

My first infusion started at a slow rate and was gradually increased to make sure I didn't have an allergic reaction. This infusion was done at the normal rate the entire time, and I was worried I'd have the arm pain I had at the end of the last infusion. There was some pain, but it was not as bad as last time. Instead of having it during the last 30 minutes, though, it hurt the entire time. It still hurts a little today.

Seems that my blood pressure has a mind of its own again. Not sure if it's the Remicade or the steroids. Or maybe it's the fact that, every time I have an infusion, I'm completely stressed out. I need to keep an eye on it and see the doc if it continues to run high.

I had a good deal of nausea after the infusion, but, like last week, it was all gone by the next day. I'm still a little tired today, and my arm is hurting a bit. Overall, though, I don't feel too bad. Hope to be completely recovered by Monday.

My next infusion is four weeks away, so I hope my veins will be healed in that time. And hopefully my favorite nurse won't have the day off.

My infusion survival kit

One thing you can say about Remicade infusions: you definitely have a bit of time to pass. The infusions take at least two hours, and, for some people who have allergic reactions, the infusions are done so slowly it can take all day.

Before my infusions started, I knew I'd need some materials to help me pass the time. I'd been admiring Morelle's beautiful bags, and I knew one would be perfect for toting around my survival kit. I asked my husband, if Crohn's were a color, which color it would be, and he said purple. Wouldn't you know it; Morelle had the perfect bag in grape. She was even nice enough to replace the handles with a long over-the-shoulder strap.

Now, I just needed stuff to put in it. I decided that it would be good idea to keep notes during my infusions. My favorite illustrator is Mary Engelbreit; I even have one of her prints on my office wall. A friend gave me a nice ME notebook, and I thought the quote on the cover was fitting for the occasion:

Walk towards the sunshine, and the shadows will fall behind you.

To write my notes, I have a new Sharpie pen. I'm a pen snob, and I love these pens. Its only downfall is the ink is blue. I hate blue ink and don't use pens that contain it. The fact I'm still using this pen tells you how great it is.

As I discussed before, I spent a lot of time coming up with an infusion playlist for my iPod. The night before an infusion, I sync up my iPod and charge it. Even though it's fully charged, I still take my Griffin charger. Although I never actually watch videos on my iPod, you never know when I might, and I'd need the extra charge. I forgot to include my headphones in the picture, but I won't forget to put them in the bag. I've come to hate the in-the-ear buds, and I've reverted to the old school, on-your-ears phones.

I didn't take any last time, but, from now on, I'm going to take some candy with me. My favorite candy (at least for the last few weeks) is the Nestle Crunch Crisp. During my last infusion, I got the munchies for candy, and my husband set off to find some. Little did I know, he had to leave the hospital and go down the street to a convenience store. Now he doesn't have to worry about it :)

I also have a stack of books that I plan to read over the next few weeks. I finished reading "Smart Soapmaking" during my last infusion, and this week I'm going to start reading "Render Unto Caesar." Also on my list are "The Girl's Guide to Being a Boss (Without Being a B*tch)" and "The Everything Soapmaking Book." At the rate I read, that should get my through to next August.

Last, but not least, no survival kit is complete without a good cell phone with text messaging capabilities. My last phone, a Motorola Q, was a big piece of crap. My new phone, an LG enV², has been the best phone I've ever owned. I can text away if I get bored, and I won't miss any of my "critical" Gmails. And I think the new message beep only slightly annoys the nurse.

Tomorrow is my 2nd infusion, and, even though the first one was pretty successful, I'm still a little nervous. At least I have a lot of goodies to keep my mind off my worries. Now if someone would just invent an "I-know-I'm-a-hard-stick-just-start-the-damn-IV" survival kit ;)

Book Review: What to Eat with IBD

What to Eat with IBD: A Comprehensive Nutrition and Recipe Guide for Crohn's Disease and Ulcerative Colitis
Tracie Dalessandro, MS RD CDN
CMG Publishing, ©2006

To say I struggle with nutrition is an understatement. I have had Crohn's disease for 16 years, and I've had an ileostomy for 13. Either alone makes eating challenging; both together can make it overwhelmingly frustrating. When you finally find things you can eat without getting sick, those things usually aren't the most nutritious foods.

Dalessandro, a registered dietitian, understands my frustration. Diagnosed with ulcerative colitis then Crohn's disease, she began researching foods that, as they're labeled in the book, hurt and heal. She also researched nutritional problems often associated with IBD and how they could be addressed.

"I realized the power of using diet in conjunction with traditional medicine to control my illness, rather than allowing it to control me. Nutrition became the link between feeling sick and feeling well."

In the chapter on healing and hurting foods, not only does she list foods in each category, she explains the rationale behind it. Soluble fiber good, insoluble fiber not good. Asparagus good, green beans (well, all beans) not good. Lean, complete proteins good, hot dogs bad (still crying about that one). In another chapter, she outlines the typical nutritional deficiencies faced by those with IBD and suggests supplementation to address them. She even recommends her favorite vitamins.

The best part of the book? Over half the book is comprised of IBD-friendly recipes. I can personally recommend the Roasted Asparagus on page 127, and the Pumpkin Spice Muffins on page 66 are on my list to try. Each recipe includes notes on its nutritional pluses.

After eating little more than chicken and mashed potatoes for two months, I've found this book to be a life saver. I've successfully added some of the recommended foods to my diet (soft oatmeal bread, asparagus, and spinach) and began avoiding foods I thought were okay (green beans, sadly). Not only is my tummy happier, but so am I. I've also learned new things about how Crohn's affects my nutrition, and I'm planning to add more supplements to my daily routine.

I highly recommend this book to anyone with IBD or anyone who plans meals for someone with IBD. It's hard to be a foodie with IBD, but the things I've learned from Dalessandro's book makes me think there's hope for me yet :)

Update 8/26: One thing I forgot to mention. In her chapter on supplements, Dalessandro mentions omega 3 fatty acids. Since the publication of this book, a study has shown that omega 3 fatty acids have no benefit in Crohn's disease.

Famous Last Words

Spoken to a friend at work yesterday:

"If the buzz on the Catholic blogs is right, he'll pick a pro-choice Catholic. But surely he's not dumb enough to pick Biden."

Things I made for the wedding

For all of 2 minutes (well, not really, but close), I had a Blogger blog that I was going to use for my craft postings. That was before I resurrected webgrits from the dead. Tonight, I've moved over that handful of Blogger posts, and I wanted to repost this one.

Original Post Date: 3/28/08 11:23PM

There's been a lot of talk lately about handmade weddings, so I wanted to share items I made for my wedding last month.

Rosary

I made wedding rosaries for both me and my husband. I gave my husband his during our rehearsal dinner, and the restaurant manager wants to know how much I'll charge him to make one for his mother :) I used Swarovski bicones in the new Golden Shadow color, and the crucifix, centerpiece, and findings are sterling silver.

Bridal Jewelry

I made two sets: one for me and one for my matron of honor. I was still making the matron of honor's jewelry the day before the wedding! Everything turned out well, though. I used vanilla semi-round freshwater pearls and fern cubic zirconia. My matron of honor's jewelry matched except for the color of the CZ, which was a lighter yellowish green (lemon ice).

You can find out more and see more pictures in my Flickr wedding set.

Getting ready for the holidays

No, I'm not talking about shopping for Christmas; I'm talking about selling for Christmas. I began selling in my Etsy shop shortly before Christmas last year, and I've always thought that, if I'd been better prepared, I might have made a good deal more sales. This year, I want to be more on the ball, and I've started planning my inventory.

The first thing I'd like to do is clear out the items currently in my shop. My first step is to put all the earrings on sale. I hope to get a few, if not all, pairs in good homes by October. If that goes well, I may put either the rosaries or the chaplets on sale next.

I'm also looking into going to my first craft fair. I've been hesitant to go to a show because (1) I'm not sure how well I'd hold up to staying at a booth all weekend long and (2) I'm not sure how I'd react to the "I could do that myself" comments I've heard people get. I've found a local festival that has small, inexpensive booths available, and, best of all, it's only for one day in October.  The weather should be cooler, and I won't have to man a booth for an entire weekend.

I've got several ideas for new items for the holidays, including something for Breast Cancer Awareness month. Last year, I sold a few pair of Christmas-themed earrings, so I'll make more of those this year. I wanted to make ornaments last year, and I'm going to try to come up with something sparkly.

And, as soon as Christmas is over, I can start planning for Valentine's Day and Easter :)

Etsy Favorites: Tag, You're It

Now that we have two dogs, I'm thinking I need tags to tell them apart. No, not really, but I like buying stuff for the puppies...and they need ID in case they ever escape the yard. As much as we spoil them, they'd be crazy to escape, but, just in case...

Comic Style Pet Tag Yellow by purepanache - Pure Panache has great colorful, weatherproof tags that come in two sizes. As soon as I get this entry finished, I'm off to buy this tag for Jackson and their Art Deco tag for Maggie.

Copper Pet Tags by jmanigrossi - This shop only sells these rustic stamped copper pet tags. You know what they say about doing one thing well...

Sacred Heart Tattoo Pet Tag by SwallowKisses - Swallow Kisses makes wonderful items featuring her tattoo-style artwork, and this tag would make your dog the coolest canine at puppy playtime.

Custom Large dog and cat tags - 1-1/16 inch by bynicola - by Nicola makes the most interesting handcut and handstamped items, including tags available in large and small sizes. Oh, and definitely check out these cute puppy dog earrings.

Large Brass Teardrop Paw Pet ID Tag by sleepingbear - A shiny pawprint in a teardrop, available in brass and sterling silver. This shop also offers coordinating items for doggie parents.

Infusion #1 completed and I ain't dead yet

Yesterday, I had my first Remicade infusion. After all the stress and worry, it wasn't that bad (thankfully).

I've read about lots of infusion sites, and most people described a big room with a circle of chairs filled with people hooked up to IV pumps. The hospital outpatient center I went to was different.  Each person had their own private room, which was pretty much a standard private hospital room. I had my own TV and bathroom, even :) I must admit I like not having to sit with strangers. Also, I'm a very hard stick, and watching me having to get stuck over and over again tends to freak other people out. Would you want to be next in line for an IV after watching a nurse dig around my arm for 10 minutes? Exactly.

Speaking of being a hard stick, it took the nurse two tries to get the IV started. She actually got a vein on the first try, but, when she tried to put in the catheter, it bent. That hurt like hell! Luckily, the next try was more successful, but it did end up in my hand once again. The nurse said she wasn't going to do my IVs anymore and laughed. The hubby doesn't think she was really kidding.

Note to self: Drinking 40oz of water did not help with the IV process whatsoever. It just made you have to drag your IV pump to the bathroom a half dozen times. Don't do that again.

Remicade is dosed per kg patient weight, and I'm on a 5mg/kg dose. I'd tell you how much my total dose was, but then I'd have to kill you. Let's put it this way - it's a good thing I have insurance. I was surprised that the nurse took my word for how much I weigh. It's also a good thing that I weighed myself before I left home for the hospital.

BTW, everyone at the hospital was very nice. There are two hospitals in the city I go to for my infusions, and practially everyone goes to the larger, public hospital. My doctor @ UAB talked to both hospitals and decided he liked the smaller, private hosptial better. I'd never been a patient there before, and I liked what I saw yesterday.

Remicade includes mouse "components," and some people have allergic reactions to it. (Really? You don't say!) During your first few Remicade infusions, the IV is started slow, and the rate is gradually increased to see if you go into anaphylactic shock or have some other awful reaction. Once I got through the first 15 minutes without blowing up like a balloon, I felt more comfortable with everything.

My hubby went with me, and he was great. He always holds my hand during the IV process, and he survived yet again without having his hand broken. After the first hour, I sent him to get me a candy bar. Good thing, too, because we apparently parked in the wrong lot, and our car was next in line to get towed when he went outside.

The entire infusion lasted 2 hours and 15 minutes. I didn't have any problems until the last 30 minutes when my IV arm started hurting. I took some Tylenol when I got home, and that seemed to take care of it. It's hurting a little again today, but not too bad. I also had some nausea and fatigue through last night, but that all is gone this morning. I felt bad enough that I worked from home the rest of the day, but I feel okay today.

Afterwards, the hubby took me to lunch. The best part? It was a girly restaurant I love but he hates, and he never goes. And I didn't even suggest it! He said he thought we should go somewhere special that I'd really like and we never go to. He was still one of only 4 men in the entire restaurant, but it was really sweet of him to take me *swoon*

My next transfusion is in 2 weeks, and I scheduled it for the afternoon in order to get in some work hours that morning. I'm glad to have the first one finished and, as the hubby said, be dealing with a known entity now.

About to leave for my first infusion

I'm getting ready to leave for my first infusion, and I feel like I'm going to throw up. I've had nausea for days and days, but not this bad. I know the nerves are making it worse.

The nausea makes it harder to drink lots of water, which I need to do to "plump up" my veins. I dread having IVs started; it's always a long, painful, drawn out process. The nurse I talked to seems to think it won't be that bad because she's a cardiac nurse (whatever that means).

I've still got to pack my bags of goodies to pass the time (a post about that later). I'm may plurk from the hospital if I feel up to it.

Songs for the Infusion

(BTW, a friend says the title of this post would make a good name for a band - I have dibs on it *wink*)

After weeks of wrangling, I finally have my first Remicade infusion set for tomorrow at 8AM. I've been thinking of ways I'm going to spend the time (although I've read infusions take 3-4 hours, the hospital just swears it will only take 2). One of my time passers will the iPod, and I've created a playlist just for my infusions.

I emailed my friends and asked for suggestions. These were my criteria:

• Positive without being overly sugary (No “Walkin’ on Sunshine”)
• Relatively up-tempo - trying to avoid slow songs that seem to make the time pass slower
• Nothing dark, depressing, angry, or advocating the violent overthrow of any world government
• Would rather avoid songs mentioning death or dying, even in a “good” way (i.e., Tim McGraw’s “Live Like You Were Dying”)

I got some really good suggestions (including one that I should have at least one angry song in case the nurses make me mad and I have to postal). Using my small collection and some new iTunes purchases, I finally came up with a good list.

So, which songs did I deem infusion appropriate? I'm glad you asked (PDF download).

I never did pick an angry song - hopefully I won't need one.