Blog Peep Questions: Round 5

In keeping with the theme of answering questions about my illness that started in yesterday’s post, I’m going to answer two blog peep questions I’ve received that were very similar…

1. When you are going through a hard time, do we always know?

2. Are you struggling day-to-day when you write posts that aren’t about your illness/how much do we see of how you are day-to-day?

The answer is no, you don’t see a lot of the daily stuff on here. Other than the straight-forward details about the disease I explained to you yesterday and in an earlier entry, I’d say you probably see about 5% of my daily struggle in my posts.

But here’s the thing, I hate to even call it a struggle. I know that sounds weird because it’s difficult everyday… and everything I do requires thought and effort and energy. But the truth is that it’s just my version of a normal life right now. And that normal is changing all the time.

Not talking about it has absolutely nothing to do with being willing to talk about it, though. I think we’ve covered over the past year that I’m more or less an open book… and am not shy about telling you of my many ridiculous antics. I’m also not shy about talking about my disease or answering questions, so if you have specific questions you should feel free to ask and I’ll do my best to answer you.

The reason I don’t talk about my day-to-day life in the ‘struggling sense’ is simply because I don’t sit around and think about it all the time myself. I just live it. There are moments that are incredibly frustrating, tiring, maddening, sad and exhausting. Everyday. But that doesn’t make my day a frustrating, tiring, maddening one. I reduce them to the moments they are rather than letting them define my whole day. I find that lamenting over all of those things only produces more lamenting. And I don’t want to live in a space that is taken up by the negative. It’s just simply not a fun way to live.

You know by now that I consider all of you who show up everyday to be my friends, and I want you to know that I don’t often talk about my day-to-day struggles with my friends that call me on the phone or stop by to visit, either. I want to spend my time in the joyful things… in hearing about their kids and their outings and their lives. I want to talk though their normal troubles and get lost in real life with them. If they ask me how I am, I tell them… but often not in the little details. It doesn’t change my reality and it does nothing but worry them, so it seems like complaining without purpose.

And that’s kind of how I judge what I talk about here: does it have a purpose? I share with you the ways I’ve struggled, how I’ve worked through different situations or emotions, and being sick is obviously a big part of those discussions. But I don’t want to talk about being sick just for the sake of talking about it… I want to talk about my illness as a way to show you how I have dealt with different situations, and hopefully learned to embrace and accept things. How I’ve learned to trust God with my life and realize that my life isn’t about me and my wants, as much as Him and what He needs from me.

I also have a purpose in updating you on the big things… if I don’t share with you that I can’t leave the house or open a window, then you’re going to be pretty darn confused about why I stay inside all day. :) I want to tell you about the big things because they shape my stories, they alter how I view the world, they help make me who I am. And there have been a couple of times, as there are periodic times with my friends, when I absolutely have to tell you that I am sad or exhausted or just plain fed up. It doesn’t happen often, but there are moments when the only way I can make room for joy is to get rid of the sadness by speaking it out loud. And in those moments, I’m glad my friends or family are on the other end of the phone, and I’m very glad all of you are here.

But the little things… the day-to-day… they are constant and never-ending. If I told you about it every day then this wouldn’t be a real representation of my life. Many years ago, when I made my list of Life Goals, number five was: To spread the joy, not the fear. My physical world is made up of the day-to-day pain and sickness, but my LIFE… my life is made up of joy. And that’s the part of me I want you to take with you everyday. Even when I do talk about the emotions or the physical struggles, I want you to leave knowing that joy can come from the hardest times and the ugliest places. You just have to choose it.

But I’ll talk to you more about that tomorrow. :)

Brought to You by the Letter “A”

Wowza. You people know how to alliterate.

I was hoping to have a couple of ‘a’ ideas to choose from, but I never expected the comments last Monday to be so entertaining! I have to admit I originally intended to choose the most fun and wacky topic suggestion, but then a few of you commented about wanting to know more about my illness [Ankylosing Spondylitis] and things associated with the disease.

A couple of you asked straight up:

* Any new research, medications, etc for Ankylosing Spondylitis? Well, it does start with an "A"

* I second the idea to talk about your illness and research, etc. related to that topic for "A". I know it would help us all understand your day to day struggles.

Another asked about the emotional side:

* "attitude" I would like to talk to you about how you keep such a good attitude. Is it something you just are or do you work at being positive? And how do you achieve it each day, moment etc. And do you ever find yourself in the dark place of a bad attitude?

And one of you pulled out some rheumatic alliteration:

* Okay, finally got one...
anticlimactic antics in annoying arctic air around associated arthralgias...

It would have been appealing to put all artistically articulated alliteration attempts one-after-another in the post and leave it at that, but I figured it would be cheating a bit if I let you guys do all the work for me!

As it turns out, you’re asking about my disease during a week where it’s making life even more difficult than usual. I’ve been half-tempted to take the week off, but I decided instead we may as well just attack it head-on, right? The next few days will be posts answering some of the questions/topics you have asked about this illness, and since I know I’ve gained a lot more readers since my one post explaining the disease a year ago, I thought I’d take today to explain the basics.

I have a disease. It sucks.

Ok, maybe that was a little too basic. ;) Let’s try that again.

My disease is called Ankylosing Spondylitis. It’s a genetic, systemic, autoimmune disease… which means it’s hereditary, it can affect pretty much any system in my body and it all stems from my own immune system attacking me.

Good times.

The way I explain it to kids is that when they have a cold, their body sends little Pac-Man cells to eat up all the bad germs so they can feel better again. My body gets confused and can’t tell the difference between the bad germs and the rest of my body, so the Pac-Man cells just attack everything. And that ends up making me feel sick and in pain.

To grown-ups, I simply say my immune system is ignorant. The Pac-Man [also known as the HLA-B27 antibody] started out by attacking the joints in my sacrum [low back], spine and neck. As the joints are attacked, inflammation occurs and scar tissue forms around the joint. The goal of the disease is to keep attacking until that scar tissue forms into bone and fuses the joints together. The process of attacking/fusing is what causes a great deal of pain.

There was a time, not long ago, when doctors believed this was purely a man’s disease, but there is more research now about the affects of the disease in women, and they are discovering that the disease can progress differently in the genders… but the truth is that it’s different for every person. Some people fuse quickly, and after fusing the pain burns out with the disease process. Some fuse slowly or not at all, some have many systems affected, some only have certain joints that cause problems. There’s really no rhyme or reason and there is certainly no predicting it.

I’m one of those people who deals with inflammation all throughout my body and systems. I have pain in my joints 24/7, feeling them every moment of the day. Some days certain areas are worse than others, and different joints flare more at any given time. There are days where I can be walking behind George [my walker] without a problem, and the next moment I can’t put pressure on one of my ankles. That may last 10 minutes, that may last 10 days. I honestly never know and never count on anything, just dealing with what comes as it does.

I can have inflammation in my eyes [iritis], inflammation in my lungs, problems with my digestive system, fevers, chills, night sweats, nerve pain, you name it. I have leukopenia, which means my white cell count is low and goes lower when I’m sick, so if you come to my house with a sniffle I could get pneumonia. I take medication so I can eat, breathe, sleep, move, go to the bathroom, deal with pain, migraines and a host of other issues. My lungs have become more of an issue because my ribs don’t expand as much as they used to, which means my air capacity is [at maximum] around 60%.

The other problem having to do with my lungs, which I’m dealing with now, is that allergies are directly connected to the immune system as well. As my disease has progressed I have found myself allergic to almost everything… smells, allergens, cleaners, wool, flowers… and now I’m simply allergic to the air, hence my confinement to my home. No open windows, no going outside, no warm sunshine on a beautiful day.

The pup can’t go outside anymore either, as he carries the air in on his fur and causes reactions for me. It’s definitely an on-going process and I am constantly learning to adapt to each new thing that arises, but I will say that as time has gone on the adapting process gets easier and happens faster. Acceptance comes more naturally with practice.

Now that you have a general idea of the illness, I’ll address the million dollar question: why can’t they fix it?

Well, there are a lot of new medications out there that have made huge differences in people’s lives. Some that have been living with the disease have seen improvements, and patients who are just developing the disease are able to take medications and avoid a lot of issues, or at least have the development slowed down.

I have tried every medication at my disposal, and I am only able to take one medication that has any impact in fighting the disease. The n-saids, which help with inflammation, nearly destroyed my digestive system. I took methotrexate, which is a chemo drug, and withstood migraines three days out of every week for as long as I could, but eventually my rheumatologist pulled me off of it. [Thank God.]

There is a newer class of medications, you’ve probably seen the commercials for them: Enbrel, Humira, Remicade, Orencia. These are fantastic drugs that have made a huge difference for a lot of people. I have allergic reactions to them… the kind where my throat starts to swell shut. So, those are out.

The one medication I take for the disease [other than the pain killers] I can only take in a limited amount before my white counts drop to a level the doctors aren’t comfortable with.

In other words, I’m stuck. And I’ve exhausted every option. And yes, I’ve tried homeopathic things that were worse for me than any drug I’ve ever taken. I spent years fighting, and I will always try what I can in the future, but accepting what is, living with it, embracing it and finding joy in it is the only way I know how to live a productive life. And as much as this disease has taken from me, it’s also given to me and taught me and strengthened me.

But I’ll tell you more about that over the next few days. This post is plenty long enough already. :)

Now, since you’ve made it through all those fun details, I feel it’s my duty to provide you with a photo to leave you smiling for the day:

You just gotta love that ‘hawk.

Alright now, blog peeps… don’t forget that you still have work to do. Next Monday will be brought to you by the letter “B” … and you have to come up with the topic. Now go to the comment section and fire away!

Only A Savior

Hello, sweet peeps…

Running a bit slow today, so in the absence of my words I thought I’d leave you with my voice.

05 Only a Savior  by  gitzengirl

Hope you enjoy it and have a beautiful weekend… I’ll meet you back here Monday for our first “letter sponsored” post. :)

Dan the Piano Man

People, I have met the Dog Whisperer’s long lost American cousin. I have no real proof that they are indeed related, but since I’ve never seen anyone tame my ornery pup so quickly and easily, I figure it has to be something in the blood.

Meet Dan. Otherwise known as Riley’s new BFF.

Dan was my birthday present from those faith sharing girls I introduced you to yesterday. Ok, well DAN wasn’t my present, but his handy piano-fixing skills certainly were. Dan the Piano Man, as I have just now decided to call him, had virtually no experience with player pianos… but we quickly discovered we are like-minded in our approach to fixing things: if we take enough things apart we’ll figure it out eventually.

Did I mention Riley fell in love with Dan the Piano man? Yes, he did, and he was more than willing to be Dan’s happy helper through the entire process. Just so you know, I wanted to put Riley on a leash, but Dan was getting a kick out of him. He even brought his wife back to meet the pooch after the piano was fixed.

I know where to look if Riley runs away from home.

I was totally enthralled with this whole process. And I think Dan was pleased to have someone he could explain his work to and show the details that impressed him. The fact that this piano is over 100 years old and working so well kind of blew both of our minds. Apparently the old adage, “They don’t make ‘em like the used to,” is absolutely true.

In the end, other than a desperate need for a good tuning, fixing the player wasn’t all that difficult. He found a hose that had an old piece of dried up tape falling off of it, so we replaced that tape with good old black electrical tape. Hey, if someone else thought tape was a good idea, we were happy to go with it, too.

Then Dan the Piano Man realized the bolts and screws [or whatever those things were] that held the roll of music in place had 100 years of gunk built up on them. So, he took them to the sink, washed them up with Dawn soap, and VOILA:

The player piano started playing like a charm. Gives new meaning to the term elbow grease. And it’s proof that Dawn dish soap really does cut through the toughest grease… truth in advertising, people.

Yep. I don’t think it’s the music Riley was adoring. Dan the Piano Man/Dog Whisperer can apparently fix pianos and tough dogs.

***** ***** *****

I loved reading about your friendships and the ways people have loved on you through the little details… there is no doubt that time, love and attention are the main gifts we all appreciate so much.

Now, for the winner of yesterday’s canvas:

Mandy: I LOOOOVE details!! I say "the love is in the details" all the time when I'm making something stupidly detailed for someone.
The first thing that came to mind for me was my bridal shower - my incredible neighbors put together a gorgeous bridal shower, and one of them made this crazy banner that said "Jack and Mandy" in script, another made a bustier cake, and another wrapped plastic-ware in napkins and tied ribbons around each one!! It totally made me feel loved.

Congratulations!!! Email me at gitzengirl@gmail.com with your mailing address and I’ll get it shipped out to you!

HDG: Love is in the Details

If you’ve been reading my blog very long, you’ve probably noticed me referring to my Faith Sharing Girls… and now you get to see their cute mugs for yourselves! Meg, Susie, Deb and Leslie are phenomenal women who show up at my house every other week to participate in faith sharing, chatting, eating and just being all around great friends. I’m so incredibly blessed.

This is a photo of Susie’s mom, Linda, and Meg. Linda is the one who gets my groceries for me every week and puts up with Riley’s constant longing for attention every time she walks through the door. Because Meg is the only one in the group that doesn’t have a May birthday [Leslie and I were actually born on the same day], she and Linda decided to do a lovely surprise birthday dinner for the rest of us.

I was in on it, of course, since it was at my house, but the other three girls didn’t have a clue. Being in on it was kind of a present to me, because I SO love being in the know. :)

Linda used to run a bed and breakfast before she moved to town, and showed up at my house with her own dishes, silverware, dainty glasses and everything. She loves collecting antiques and has the loveliest things… and it certainly changed the look of my table.

The linens were given to her by her friend Dixie, who had brought them back from a trip to Italy. Trust me, when I found that out I was tempted to move my plate to my lap so anything spilled would land on my jeans instead of the table cloth. That Linda is obviously a trusting woman.

I’m sure some of you are looking at that table and noticing the fine stitching on the linens, the value of the plates or stemware, or the delicate pattern on the fork. And they are precious. But what I see is the love in the details.

It’s present in the way Linda and Meg thought about us, how they took joy in making us feel special. How each table piece was chosen, not to display Linda’s pretty things, but to display the affection she feels for each of us who love her daughter.

Each one of my friends that sat at the table that night have the same qualities about them. They love in the details. They show up at my house every other week, not because they don’t have someplace better to go, but because they don’t want to be someplace better without me. When we sit in my red room to go through the chapter we’ve read, they sit in the spots where they know I’m not comfortable and leave the comfortable chair for me.

They leave their busy lives and faster pace behind them at the door and settle into my slower moving way of life. They don’t rush me if I’m out of breath while I’m talking and they fill me in on conversations they all understand because they see each other and out and about, but I miss while I’m here in my home. They show their love in the details, and they do it in an unassuming way that could easily go unnoticed.

But I notice. Every little bit of it. And I am grateful.

Susie was giving me a hard time because I was taking photos of everything… the food, the salt and pepper shakers, the linens. I was capturing each detail to show all of you, and also so I would never forget them myself. Some may simply see a plate of food, but I see the love in the details.

And apparently, so does Suz. I loaded photos from her camera onto my computer later that night so I could see pictures from a friend’s baby shower I had missed. She took detailed photos of another friend’s new home, of people and decorations and… yes, the plate of food they were served.

My first thought: “Oh, I’ve taught that girl well!” But really, I haven’t taught her a thing. She was just loving me with the details, as they are all so good at doing.

A friend is one who strengthens you with prayers, blesses you with love and encourages you with hope.”

I can’t imagine any details more important to friendship than prayers, love and encouragement, which is why this canvas fits my friends so perfectly. I’m passing it along to one of you today so you can hang it on your wall as a reminder of how to be a great friend, or pass it along to someone who has been all of those things to you. I’m lucky I didn’t need the quote to teach me a thing… I learned it from the best of them.

To win today’s canvas, leave a comment telling me how someone has shown you love by paying attention to the details. Make sure you comment before midnight CST, and I’ll post the winner tomorrow. [Only one comment per person, please.]

Blog Peep Questions: Round 4

Welcome to your 4th installment of:

Who is your favorite superhero?
Oh, gosh… I honestly can’t claim to know superheroes or their back stories well enough to tell you a favorite. I did, however, have a really fun conversation a few years ago about superpowers with my niece Anna. We were sitting on my parents’ back porch after having just stuffed ourselves with s’mores, trying to decide what superpower would be the best one to have.

It pretty much came down to super-hearing, invisibility, flying and mind-reading. She was somewhat torn between invisibility and flying, but I said flying hands-down. A small part of it was the physical thing… since I’m not moving much anymore it seemed like it would be a crazy-good rush to go as fast as I wanted, anywhere I wanted. But mostly, I just didn’t want to know what people really thought about when I wasn’t around.

I mean, whether you have super-hearing, are invisible or can read minds, you are inevitably going to find out what people probably never intended you to know. I wish I could say it was about respecting people’s privacy but, in truth, it’s because I would drive myself crazy trying to please everyone and fix what they thought was bad about me.

I don’t have thick enough skin for that!!! So, flying it is. I’ll let you know if I ever master it. :)

What did you study in college?
It took me awhile to decide on a major, actually. My problem was that I enjoyed way too many things.

I started off as a biology major. One of my favorite classes in high school was Advanced Biology where we got to dissect cats and do all these great experiments. I know it sounds creepy, but I got really into it. I took those classes for a few semesters but it just didn’t feel like something I was going to enjoy studying for the rest of my life.

I loved my psychology class and took a few sociology courses that I also really, really enjoyed. But it was during one of the sociology classes that my professor handed a research paper back to me and commented that it would be good to keep on file if I wanted to expand it for publishing. I started to realize that the reasons I loved those classes were because there were very few tests, a whole lot of research and a whole lot of writing. The next semester I took a class called Literature and Psychoanalysis and I felt like a lightening bolt had hit me. I have honestly never enjoyed anything more than taking pieces of literature and analyzing the characters’ meanings, intentions and motivations. It was fantastic.

So, I became an English major. I had started with a Business minor, realized how much math was involved when I took Statistics, dropped that course and decided on a Business Communications minor. SO much better. I also had a Professional Writing minor and everyone told me I would never get a job unless I went into teaching, but thank goodness they were wrong! I really loved my college classes and sometimes wish I could sit in the back of a good literature class again just to hear the discussions.

How do you let your dog out to potty if you can’t go outside?
Good question! Actually, Riley has never had to go outside because I litter trained him. Yes, there is litter for dogs and it is the most fantastic invention ever!

When I first decided to get a dog, I had three criteria that had to be met: he couldn’t shed, I didn’t want him to smell like a dog and he had to be small enough to litter train. Petco makes a great brand of dog litter that works great for us, if you’re interested in trying it for your pup.

This is a psychedelic photo I took of Riley jumping out of his litter box  for his Week in the Life post last year. It’s just a little wicker enclosure with his litter box inside, tucked away in my hallway.

It’s not to be confused with his cute matching wicker kennel where he goes to pout or contemplate the complexities of life. Thankfully he doesn’t confuse the two, either!

Although he is litter trained, anytime he has gone outside for walks he makes up for the fact that he’s treated like a cat inside by marking every tree, bush, blade of grass and stray rock that crosses his path. He is nothing if not an alpha dog.

My neighbor Candace and I are bracing ourselves for the day he walks up and marks on her cute little dog, Martini. She’s the only dog Riley likes and we wouldn’t put it past him to make sure the whole world knows she’s his.

Men.

Since you do digital scrapping, have you turned your handwriting into a font?
Ok, so I know I answered this question in a previous post, but I have an update for you. I told you previously about having one of my handwriting styles made into a font that you could download [Pea Frankie]. It’s the style of writing I used when I did paper scrapbooking for a clean and consistent look, and I took the opportunity to have it made into a font when I started scrapbooking digitally.

After producing that font she asked if I wanted to do another style, so I sent her my more normal, everyday handwriting. I totally forgot about it until I got an email from her a few weeks ago with the new font completed. She now has it up on her site where you can download it as well [Pea Sara Print].

The Pea Frankie font is what I used to write “Blog Peep Questions” in the logo at the start of this post, and Pea Sara Print is used in the tagline of that logo, as well as all the headings on the blog posts and sidebar. If you like them, feel free to download away!

Ok, that’s it for today. I had planned on answering a lot more questions, but apparently I’m completely incapable of giving short answers.

But I’m guessing you all knew that about me by now, right? :)

Sponsored By Sesame Street (kind of)

I’m always looking for ways that we can be a little more interactive here on the Gitzen Girl blog. I love that you show up every day to read my ramblings, but sometimes I wonder what YOU ALL really want to read about. And I think I may have figured out a fun way to let you decide.

On Mondays, we’re going to pretend that we’re back in our younger days of watching Sesame Street… where each episode was brought to you by a letter of the alphabet.

I’m going to give you the chance to pick my topic of the day, and each week’s topic will correspond with the next letter in the alphabet. For example, next Monday’s topic will have to start with the letter “A” … but YOU ALL will have to provide the topic for me. You can have me tell you about my [A]ll time favorite meal, or tell you a story about owning an [a]quarium or inquire about whether or not I’m [a]ccident prone. I would appreciate it if you didn’t ask about crazy topics like aardvarks or acroliths, because those are topics for which I don’t necessarily have a lot of experience [I totally grabbed that last one randomly at dictionary.com].

I have, however, read enough Harry Potter books to tell you how to do the [a]ccio spell if you’re interested.

At the end of each Monday’s blog post, I’ll have you give me suggestions in the comment section for the following week’s letter. Beer, Cats, Driving while my car starts on fire [oh wait, that one was already covered…], basically the sky is your limit.

This could be fun… I’ve always liked a good challenge. :)

Ok, peeps, start posting topics in the comment section! And remember, next week’s blog post will be brought to you by the letter [A].