The Next step...

So, in addition to the no sugar, no flour experiment (see here), I began a new medication yesterday. This seems like a lot of change all at once. And change usually menas I have been feeling super rough, so experimenting needs to happen to find a solution to fix the rough and put a patch on it. But not this time. This time things have been fairly status-quo, well as status-quo as things go in my world. I've not been feeling bad. Actually, I've been feeling pretty good (relatively speaking). But that relative feeling of good can lead me to a place of complacency, where a good surprise dose of bad can sneak up on me and take me out for a few days. But not this time. Nope, I am in fighter mode. I am on a mission to find a solution that works (at least for awhile). I want to at least try and stop the damage I see getting worse every year this continues. And if something will help, I am on board! Let's try it. It's not like it can get worse, right?
Prednisone is the one medication that has worked over the course of the last 9 years (yep, I've been sick for that long...insane!). It was the medication that took me from thinking at 24 I would have to move home and be taken care of by my parents for the rest of my life to being able to know I would be just fine on my own, like a 24 year old should be. And it happened in less than 5 days flat! Incredible. But with that triumph comes some consequence. It leads to weight-gain (for reals), a roundness to the face (moon-face), facial hair (always attractive on a lady!), and other non-visible things like brittle bones, anemia and other fun things. So after 9 years and many ups and downs with that miracle maker it is time to see what life could be without it.
While in Seattle, my amazing doctor started to discuss the idea of Remecade with me. He is a crazy smart dude, with an incredible bed-side manner. (Loved him!). After some discussion and research, I got on board. I've been through every other treatment that should work, but they don't.(Hence why I am always described as a mystery by medical professionals.) The prednisone is the constant and winner when it comes to keeping the symptoms and damage of my disease at bay. But it creates its own damages. It was time to try something new (and maybe a little scary).
Then I moved.
And as any doctor who I have seen does, my new doc in DC needed to confirm that I actually have sarcoidosis, since I do not fit the mold at all. It was confirmed. Then she also suggested Remecade as a treatment plan. So, after much less effort to gain approval from the insurance company ( 4 weeks instead of 3 months), I began the Remecade treatments yesterday. After going in for my first treatment, I do understand why insurance fights. It's pricey and once you start, you always have to go. There's no stopping and starting this mediciation because once stopped the body becomes immune to it's power. (The body continues to amaze me!). And there's a lot of expense involved. You go to the hospital for the infusion. I didn't mention that this can only be administered via an IV in an infusion room. So, you have nurses, the room, the juices offered, the tylenol and benedryl (all at hospital prices). And that doesn't include the cost of the medication. It is mind-boggling. But I am lucky and have a job that provides health insurance. Insurance that took the information provided to them and decided while it may be an experiment, it just might work in the favor of their patients health. (Maybe a few calls from said patient in her sassy pants mode put them over the edge...).
Yesterday, I geared up and put on my big girl pants (as my brave friend Bridget would say) and went for my first infusion. I really didn't know what to expect. And while I put on a brave face, my heart was racing (and my blood pressure skyrocketed!) and I may have teared up a tiny bit. Anne, the Infusion Dept Director and her cohort Joanne immediately made me feel a little more at ease. They were kind and expertly inserted the IV (I always get nervous because I have wonky veins..of course). I was still a little nervous as I sat in the room alone and started the treatment. I have never been more grateful to "santa" for a gift than I was at the moment I busted out the iPad and watched a little Downton Abbey (thanks to my friends Emily and Samantha for making me wacth the season 2 finale, I am now hooked). So instead of being nervous, I relaxed with some apple juice and watch as the Lordship and Ladyship handled their random affairs. Before I could start a third episode, the treatment was over and it was time for me to head out.
I will return in two weeks for a second treatment, then again in 4 week after that. From there, if things go as planned, I will visit the infusion center every 8 weeks for a little visit with Anne and Joanne and continue to catch up on Downton Abbey.
I am not sure what the future holds and if this will be the thing to help my cause, but I am glad to be giving it a go! Fingers crossed.

Schulte Days

(should have been posted 2/26...computer issues apparently)

This weekend I was able to spend a quiet weekend with my family. It started as a trip to attend the annual Schulte Days extravaganza that the Dude and Dudette host annually. That party ended up getting cancelled due to plague-like flu situations. I stayed with the plan for a few reasons, and believe me it WAS SO WORTH IT!
I enjoyed some quality one-on-one time with each of them. That never happens. Usually we're all together, when we're together (which is fun) but it was so nice to have time with each one of them and just really talk.
Mom and I had a "spa" day and got all girlie. So nice and just a good treat. Then I introduced her to the wedding shows on TLC. Watching them with her was super funny. She was so appauled and that just cracked me up.
Saturday we celebrated my birthday a few weeks early with a trip to the Western wear store, to get me some cowboy boots (like the rest of my family) and then went out for a yummy dinner.
I ended up spending the night at the dude and dudette's. And just hung out and chatted. Sunday morning we woke up and the dude made a yummy breakfast, then we finallygot our game on. (You should know we LOVE games...Jen does not so much, so when A and I are together we always play a game!). Then Jen and I went and spent a whole bunch of money at the outlet mall (we are REALLY good at that together!).
Then I headed back home and mom and papa made me a super yummy no sugar, no flour dinner, including dessert! My mom is a genius and found an incredible dessert recipe with no sugar.
And Monday, it was a work day for me and hang out with the retired guy. We enjoyed a two hour car adventure and relived our cross country adventures from last summer.
It was a great weekend with my family and such an unexpected one.
I am a lucky lady!

A photo from Chrstmas.

Snow in the south

Ok, so I'm still not 100% sure that DC is actually in "the south". I guess perhaps my idea of the south is what I should refer to as the deep south-- Georgia, Mississippi, etc. I do technically live below the Mason-Dixon line and people in Maryland did actually have slaves. (That's where Harriett Tubman escaped from-- your fun historical fact for the day). I'm not sure why but I definately put slace-owner locations into "the south". So, yeah, I guess after some thought DC is "the south".
Either way, there are seasons here. Yes, winter is more mild than say in Michigan or Minnesota, but there is still a need for a wool coat in winter months. Not everyday, but many days between November and February (winter). There is definately a summer (shrouded in muggy, hot temps), and then fall where there are warm afternoons and crisp evenings. After living in AZ for so many years, the idea of fall is still so heart-wamring to me. I love the smells and tastes of fall veggies. And I absolutey LOVE that fall meant the end of ridiculous sweating when taking out the trash. I have not yet experienced spring in full wing but I can only imagine that when the Cherry Blossoms bloom, it will smell yummy! Already, the daffodils are poking up in the yard---delightful.
But this week (one week from my birthday--always), it is snowing. It is winter's last fight to produce "winter" like everyone obsesses over. They've been talking about this storm for over a week. Calling it things like Snowmeggeton, & snowquestration ( a joke referencing the current news at the Capitol). And with the hype and people's insane worries about snow only increased, locals are freaking out. (My landlord included). He popped by yesterday and made sure I had everything I'd need for a few days without access outside. Um?!
I appreciate the preparation by everyone around me. I did go and buy some ice melt yesterday to take care of the stairs into my place, but seriously there is not a huge need for panic. By tomorrow afternoon, it is supposed to be in high-40s. The snow will be melted by Saturday and give way to spring. That is, if any of it actually sticks. As of now, it has completely turned to rain in my neighborhood. The melting has already begun.
I'm not saying other places further north and west have snow, but in DC, there was no need for panic.
Maybe that's the Michigan girl talking, but really, I just don't get the panic.

Hibernation Station

Apparently like everyone else in the world, I do not make resolutions at the New year. I did for a bit but discovered it never really worked. The change of a calendar date does not motivate me in the same ways that it seems to motivate others. That said, I make resolutions/changes throughout the year based on my need to change something at any given time.
In December, I had had it with my pants being snug and decided the WW program I had done was not working and I needed to make an adjustment, probably to move more. It went well for about two weeks. And then the holidays arrived and I started to travel.
Whoosh! (That's the sound of my significant motivation flying out the window. And my $50/month!)
I am limited due to the joint situation and the trainer I had wasn't really meeting my needs, so  very qucikly I was bored with the treadmill. When I got started again in january, I really lost my excitement at the gym. Plus the flood of all those resolution people was rather annoying. So, I opted to look into some pool programs. DC has an especially awesome Aquatics program that I found out is extremely cheap! I found an Aqua Zumba class and promptly registered. I have been twice now. It's fun and definately a good workout. And I'm glad I did it.

Since the class isn't everyday and I am not 100% sure about the gym, I try to supplement with some walks. I love the crisp fresh air, especially after sitting at a desk all day. It's just so nice! Today I woke up very early for me and had no real reason to be at my desk before 8:30, so decided to bundle up and head out for a brisk walk to kick start the day. It was pleasant for the first 3/4 of a mile, but lo and behold, as soon as I was at the farthest point from my house, it started to sprinkle. Not too terrible, but I needed to walk a little more quickly. Then the sky opened up and I swear, chunky rain started to pelt me! If I had the ability to run, I would have sprinted home. It was awful! I felt like I was being stung. By the time I got home, my eyelashes, eyebrows and any exposed hair from under my hat were completed covered in iceicles. Not cool.
I spent the rest of the day warming up. In fact, I still have on 3 shirts and a hoodie!
So the very LAST place I want to be tonight is in a pool with water. The class itself won't be bad, but I cannot stand the thought of being shivery cold again today. I just can't do it. Blue limbs once a day is good enough for me.
So, here I am publically outing myself and not going to work out. I'm not eating sugar or flour these days---does that help make it better? I'm going to tell myself today that it does and hibernate until tomorrow morning.

Birthdays, friends, and joy.

This week I took an impromptu rewards travel (read:free) trip to my beloved Seattle.
I planned it out two weeks out with some pals and made it happen. And I realize once again how lucky I am to work where I work. Not only do I have great co-workers/friends, but I am also able to take my work with me. Though if I'm being honest, I have to use some vacation days STAT!
So off to Seattle I went. Headed to my happy place. To spend time with some of my favorite people. Exploring some of my favorite places. Yay!
As the plane was descending into Seattle and I looked out the window, tears sprang to my eyes. After 8 months, I had forgotten how beautiful it is. I had missed the water and mountains and greenery more than I knew. So in true Chris Schulte fashion, I teared up. On a plane.
Em picked me up and there I was just working from her house, like nothing had ever changed. Sam and Craig were floating around, which was awesome. So many of my fav people in one house! Amazing!


Playing Hoot Owl Hoot! Best game ever!

 

Friday was date day with my favorite Seattle little lady before she went to spend her birthday weekend at her dad's.


Playing My Little Pony adventures.

 That meant her mama and I had a big girls weekend to play.
The rest of the weekend I went with Aubs and spent some time at Pike's Place Market, downtown Seattle having a girl's fancy dinner and mini-bar crawl. Sunday was time in my old neighborhood- enjoying Simply Desserts, the Fremont Market, and just the vibe. I lived in such a  great neighborhood! And there is so much I miss.

Cocktial time @ Wild Ginger

Mardi Gras parade @ Th Fremont Market.

Simply Desserts cake! Yummy!

Monday was Em's birthday. And as a mama with a munchkin with a birthday in proximity to hers, her birthday sort of falls off the radar, but we made sure to not let that happen this year! Kaisa, too! (she and I went mama present shopping on Friday during our date day, it was all her idea!). We started the day with yummy pastries and good coffee. And after some pushing Em decided what she wanted for a birthday dinner-- Quiche Lorraine. And due to the change fothcoming in my diet (no suger, etc), I decided that although we were sweeted out (from the weekend of celebrating), I needed to make these--

Peanut butter oreo blondie brownies- courtesy og pinchofyum.com

AMAZING!!

Other pals were able to join the birthday celebration.
Although not for my birthday, it was such a treat to spend the evening with good friends, good food and laughter.
I sometimes forget how lucky I am to have so many great people in my life. Near or far - I am surrounded by good friends, who are really more family than just friends.

Little Ballerinas

Another round of Hoot Owl Hoot!

Dessert time.

Laughing about Face Juggler. Hysterical!

Links to the incredible meal--
Quiche- http://allrecipes.com/Recipe/Chef-Johns-Quiche-Lorraine/Detail.aspx
Brownies- http://pinchofyum.com/peanut-butter-oreo-blondies#comment-18828

No sugar? No flour?

Um, yes. That's right.
No more refined sugar. No more flour. Sigh.
That is the latest plan to find a solution to the mystery that is me and my disease. One more doctor  takes the list up to 8 professionals who have used this phrase or similar to describe me. A mystery. Sigh. As I have said before, I understand it but it is very annoying. I mean, I get it. I don't fit into any mold. I don't fit into the box. But to be told by a professional (or many in this case) that I am a mystery is just disheartening. The glimmers of hope kind of disappear for a brief moment and clouds of doubt creep in-- will this ever go away? Am I going to end up in a wheel chair? Will anyone ever figure this out?!! Blah!

So, the latest step in my healthcare regime was to establish care with an acupuncturist in DC. I have found amazing success in the past getting acupuncture along with the western methods. I enjoy a happy medium of two ways of thinking. I think it means I get the best of both worlds. As with any new doctor and establishing care, I have to go through an entire list of things I've tried, times I feel good/bad/indifferent. The only consistent thing in my case is the inconsistency. Nothing seems to have a rhyme or reason. And since I have tried eliminating items from my diet before without much success, we ended up here. Where I was really hoping to not ever be. No sugar. No flour.
The sweet treat, bread-lover in me is so sad. If I could live on sweets and bread, I would. I LOVE them! Not to say that I don't like veggies or fruit because I really do. A lot actually. But to remove treats and bread is rough.

No more pizza. No more sweets. No Treats. Double sigh.
Adidos...



Tonight, I will clean out the cupboards and toss out the things that are open and might be tempting. Other items will be put into a bag to take the favorite family.
And I will order pizza for dinner and have a cupcake for dessert.
I guess my time as a chubby bunny will hopefully come to an end.
And I can discover some new recipes...
Silver linings.

Stalker turned Baker?

 

 

There are moments in my job where i really think a trained monkey could take over for awhile and I could go drink beverages with umbrellas on a beach some place. One of those moments happens to be right now. And not just this second, but in general since December really. There have been some intense moments, but for the most part I am in flux. Waiting to hear back from a site. Waiting to hear about the direction the client would like to go. In general, I am waiting.

While waiting there isn't a whole lot I can do. It's a delicate balance of working too much in one direction only to be told at a later date that the other direction is where we need to head. While I never mind working hard, in this case, to do too much work is a waste of time. During this phase, I spend an awful lot of time on the phone and on hold. Waiting.

Since there is little I can accomplish during the 5 minutes I am on hold, I have a handy list of websites, blogs and quick reads to entertain me (but not take away my focus) until the person I am waiting for finally picks up. I have found some really fabuoous ides, places, and things along the way while on hold. That's fun, I guess. But if I'm really being honest, I'd rather just have answers and stop waiting! That is not realistic, so in the meantime I wait. (and stalk.)

Because I live (and plan events) in DC, the world revolves around the schedules of the important people and events taking place. Unfortunately, I am not that important person. I fall way down on the list of priorities. Thus, my other talent in the last few months has been to become a professional stalker. I mean, seriously. I even have a schedule of when and how I reconnect with a person I need to talk with. No joke.

My life in a nutshell-- waiting and stalking.

I guess, really, the two talents should go hand in hand. As any good stalker knows, patience is essential. Patience and something for the stalkee (is that even a word? I don't think so, but I like it, so we'll go with it.). So, as I was saying, something for the stalkee to recall them and want to talk with them. I am convinced I will win with handwritten thank you notes and homemade baked goods.

 

S'more brownies and Crack (golden graham s'more bars). Yum!

With that in mind, once I finally settled on a meeting date with an important contact (after her important role in the Inauguration, of course.), I determined I would bring her baked goods. A not-so-subtle bribe just to remember me and put at the top of the call back list for the next time.

Yeah, that seems like an awesome plan. Until you leave the treats on the kitchen counter. Whoops.

My fellow stalkers just shook their heads in shame. Sad.

 

And now circling back to where we started- my time waiting and checking out blogs...today, while on hold I checked out a new favorite and what should the topic be, but brownies and stalking. Check it out-- http://melssweetlife.com/. My favorite line:  if you ever find yourself in a stalking situation, don’t forget to bring baked goods.

 

I could not have said it better myself! Which I guess means, I may need to take some baking courses to improve my odds of success. I guess there could be worse things in life! ;)