Tuesday, June 26, 2012

Oh vacation, I miss you!

We got home Sunday night from our vacation a little before 7pm. And we managed to get everything unpacked in record time! It is really nice to be home, but I have to say that I miss being on vacation already. Monday was kind of a lazy day. We hit up the zoo and saw their new tapir and the baby harbor seal! It's kind of my favorite place. But I had to go back to work today, boooo. And between tomorrow and Friday night, I get to work 30 hours! But it's okay, because I asked for the extra hours. That way, I only use about a week's worth of paid time off.

Oh my gosh though, so much to tell about my vacation!

So we headed out of Wisconsin Friday morning the 15th and made it all the way to Hudson Ohio. It was a long drive, but that was our plan and we had a hot tub in our room because I thought I might need it. I didn't need it as bad as I thought I might but it was comfy anyhow :)

Saturday the 16th, we met one of my awesome friends Heather and her hubby for coffee/breakfast. We spent like 2 hours talking and I feel like we could have talked the whole day away. It was awesome. But alas! We had Gettysburg to get to! We stopped at Montezuma's for dinner and by the way if you are ever in the Gettysburg area you have to go there. It's like a requirement that I am making for you right now. Why? Because they had amazing food! No alcohol, but that's okay. They legitimately had the best enchiladas verdes I have ever had - and I know my delicious Mexican food. I have so many craving for it now :(

We pretty much spent the next two days climbing around the Gettysburg battlefield. It was amazing to see how much of it has remained the same, thanks to being a park. Seeing where so many, including brothers from the boyfriend's family, fought and died (including one of those brothers) was really solemn and yet super cool. Sunday night we went on a ghost tour and I got some good pictures of orbs. The boyfriend keeps picking on me about them though ;)

Monday night we ended up in part of West Virginia after leaving Gettysburg. I also hit up my Enbrel that night, which was good because I was worried my gigantic lunchbox cooler wasn't keeping it cold enough. The next day? I had no side effects. It was awesome. Tuesday, we hit both Antietam and Harpers Ferry. Antietam gave me some creepy vibes to be honest, but what can you expect from the nation's bloodiest day in history right? We didn't stay long at Harpers Ferry, but that had a lot to do with the fact that it was about 90 with crazy high humidity. We headed back to the hotel, definitely showered, and called it an early night.

Wednesday, we did something super awesome (yeah I know the whole vacation is super awesome - sssh ;) ) - we drove through the Shenandoah Valley.There were kind of a lot of bugs so being outside and still wasn't a fun option, but driving with the windows down up and down the mountains was so cool. We ended up in Charleston, WV, that night where I was supposed to meet up with a friend but I got hit by the fatigue bug and lazed around most of the night.

Thursday we went to The Wilds, an amazing safari park in Ohio. They had rhino babies! They are the only place in the world with fourth generation rhinos. They are working on great conservation efforts, including introducing species into the wild after they have disappeared. Our guide was pretty cool and I got some awesome pictures. We drove a little more and spent the night in Columbus.

Friday, we headed on up to Dayton where we hit up the Wright-Patterson Air Force Base. Yours truly got to hang out on Kennedy's Air Force One... well, and Eisenhower's and FDR's and Truman's! And we got to see a bunch of experimental aircraft in addition to a B2 bomber and space things! Then we drove off to Cincinnati, where we stayed in a fancy hotel and caught a Reds/Twins game... well, most of it. We left early and then by the time we got back to the hotel I had swollen fingers that I could barely bend :(

And that's after showering and getting them a little less swollen. Wah, wah.

Since we were right across the river, we drove into Kentucky just to say we did Saturday. We hit up a great deli with gluten free bread and an awesome gluten free bakery. Then we made a lot of headway on driving, making it all the way to Springfield, Illinois! And then I got a fever and rash all over! Hooray!

My armpit is actually tan because I suck at putting sunscreen on my armpits apparently.


Sunday morning, we visited the only home Lincoln ever owned and the Capital building where he worked - and where his body was displayed on its way to Oak Ridge cemetery where his tomb is located... and where we stopped next. And then we made it home, to sweet sweet Madison.

It's nice to be back and to sleep in my bed with more clothing options and a fridge for my Enbrel. But I love going and doing cool things and I miss that sense of just do whatever we feel like. At least now with my schedule change at work, I will be home more in the evenings and the boyfriend and I can do more together like make dinner. Mmm dinner.

So that was my vacation! It was awesome and I was silly to be so apprehensive about it as I was before we left. I can't wait until our next super awesome adventure!

Friday, June 15, 2012

Updates and a Vacation!

"How do you document real life when real life's getting more like fiction each day?"
-Rent
It gets tricky, that's for sure. But getting super nice and touching messages from you guys is pretty awesome :)

Tuesday, I saw a shrink.

Yup.

It was the first meeting so I didn't know what to expect and it's a little awkward to share my entire life with a stranger. But he laughed at my jokes - sincere laughs not pity laughs. And he has family with arthritis, so he knows what's up. I have a lot of other stuff going on in my life that I need to work through too, but we will see what happens.

And right now I'm on vacation! Whooo!

We are on a civil war style vacation, with some pit stops to meet some good friends along the way. Tomorrow, we land in Gettysburg for a few days and I'm really excited! My cane is folded up in my suitcase and I've got my buddy Enbrel in the fridge for now at the hotel, waiting for his chance to... hmm, maybe I won't go the 'get inside me' route.

If you'll excuse me, I've got a date with the hot tub in my hotel room and some muscle relaxers.

I'll share pictures!

Wait, no, not of the hot tub - of my trip!

Monday, June 4, 2012

More Scribbles

I wake up to the sound of the deadbolt turning. All at once I'm comforted and oddly upset. It's 630AM. On a normal day, I'd be hitting the snooze on the alarm that isn't set right now so I could eventually get up and take him to work. But today is Saturday. We are both off from work, but he is gone spending time with his dad. They don't do it often, so I'm glad he is going. And yet, I hate when he is gone.

I can't go back to sleep. There are storms raging outside, the booms lighten the otherwise gloomy sky. It keeps raining. It feels like home.

I decide it's time. I change and tie my keys into the thumb-hole on my running shirt. This is crazy, I shouldn't be doing this. Not only because of the storm, but because of my health and the lack of him being around. I could get hurt and no one would know or know how to help me. I tie my shoes in stages - tight, tighter, tightest. It's still raining outside, but only light mists fall now.

I run between bus stops, then walk. I run downhill and pick up speed. I walk now, watching the lightening dance in the sky. It's so beautiful. I should be afraid of it, but I'm not.

___

I get on the treadmill, my familiar foe. I walk slowly, my joints gently releasing what feels like creaks but make no sound. I increase speed. I set the timer to count up, marking my time as an accomplishment instead of a fraction of a suggested time.

Five minutes.

I increase the speed to a job. Suddenly, it's like I never stopped running. 30 second, 60, 75. I have to stop - not because I can't breathe or because I'm going to fall, but because my thighs have found each other unpleasant company. If I had pants, I could have gone longer.

I really miss running. It's like being alive. Nothing else makes me feel that way.

Sunday, June 3, 2012

Pages from my notebook

There are some things that I don't even share with you guys. Weird, right? I share pretty much everything with you. So then I thought maybe I should share what I don't share and turn it into what I do share.

Oy, I'm dizzy from that sentence. Here are some random scribblings from my notebook:

I am not my flesh and bones. They fight themselves. I do not have to fight myself and make it worse.

There is a civil war going on in my body. Humira was winning for a while, but began to fight a losing battle. Time for Enbrel reinforcements! Abraham Lincoln said that a house divided cannot stand. Some days, I hardly can. Like Lincoln, I will not give up the fight.

I am not my illness. It does not define me... But if I have no memory of a me without illness, then who am I?

Why do I get to suffer? Why does it always last? Will I ever get better? What is 'better' for me anyway?

It is so hard to be patient - with the situation, medications, myself. I virtually always had this. Why can't I get used to it? Why can't I accept it as my life? Why can't I just be patient instead of a patient?

I do not push myself when I should, and I push too much when I shouldn't. Work on this.

Forgive yourself. It is not your fault. Illness isn't caused by anything you did and in no way did you deserve it. You were five. About the only bad thing you did was blame Kelsey for things you did so you wouldn't get in trouble... Although, that was pretty horrible. Talk to her more.

I fear my condition getting worse. I'm afraid that I will begin to lose the control I do have. I am terrified of needing 'help' - assistance devices, help getting dressed, help showering or bathrooming. Definitely most afraid of the last one.

I feel scared about losing my will to fight for myself and having to 'give in.' I have come close so many times. What will be the last straw?

I fear being alone because my illness becomes too taxing on myself and others. I'm afraid of dying along and not cared for in a horrible nursing home like my great grandma Kay [who died of complications from MS]. She deserved better, and I deserve better. I don't ever want to be in a nursing home, no matter what else happens. I miss her so much. I wish I could have gotten to know her as an adult. On the other hand, she's not hurting anymore, not confined to a go-cart. Jeez, I'm jealous.

My illness does not define me. But it does though. It is why I do what I do. Without it, how would I have turned out? I probably would have ended up playing softball and doing track, going to Harvard like in my dreams, and studying law or medicine. Instead, I'm here. I'm on this cold call floor captioning calls for the deaf and hard of hearing. I live in a great city with good insurance now. I have a wonderful boyfriend and amazing friends I probably never would have met. So... maybe it's worth the pain?

Normalcy.
There is no normal anymore, just different circumstances surrounding what used to be the nuclear family. Why do we try so hard, then, to be normal?
'Normal' is a house with a two-car garage and a pool. It is marriage and 2.5 kids and a dog. It is certainly not arthritis, not steroids, not weekly injections to alter my DNA.
The only normal thing about me is that I have all the parts, all the building blocks that make up a woman. Why do I try and want so hard to fit in when I was born to stand out?
Because 'normal' - as hard as it might be to achieve - has got to be easier than this... right?

Saturday, June 2, 2012

It's a Miracle!

Oh Enbrel, you make me have amazing dreams... and delusions of grandeur that I'm okay with having.

Wednesday, I had my appt with the NP at my rheumy's office to clear me for Enbrel again after my debacle with my not-so-lovely sinus infection. And I had an amazing time. It's not just because I love the office and everyone there, or because the NP is super sweet to me.

It's because I had no swelling anywhere.

Let me say that again.

After 18 and a half years of swelling just about every day, I HAD NO SWELLING ANYWHERE.

Right? The fuck?

I was on the verge of tears in the office and everyone could tell. I just kept saying "okay, this is really weird" and "no, um, actually that doesn't hurt at all." My sed rate was 18, 18! My labs were all within normal ranges too.

I would seriously be lying if I didn't tell you that I cried in the car before I drove home. This couldn't have come at a better time. Mentally the last little while I have been... fragile is maybe too nice of a word. I have been crying myself to sleep, crying at work, pretty much just crying. I thought maybe it was the combination of reading The Time Traveler's Wife and letting myself have my semi-annual full-on period. But I think it was a little more than that. I didn't bring it up with the NP but I did indicate it on my pre-appt worksheet so there's that at least.

In my last post, I mentioned that I had been able to run and hit the gym. Grand total in the last week - about 4 minutes of running, a good amount of fast walking, and two trips to the gym. And despite bits of chocolate sneaking into my diet, I have been pretty good at sticking to paleo foods. Last night I turned down pizza from my favorite GF pizza place right down the road for a salad. This is huge. Pizza is my favorite! But this also may have something to do with the fact that last Saturday I had a nasty migraine and threw up their pizza... which tasted the same coming up. That was weird.

So anyway! Enbrel and I got busy with each other last night. I'm glad to have him back in my life. We kicked Arava out of our med bed. Three's a crowd, right? I needed this good news so much. I felt like I have been trying so hard and getting nowhere, on a gigantic treadmill from the 'fuck you' company. Now I feel like I'm getting somewhere, somewhere awesome.

In two weeks, the boyfriend and I will be off on our vacation to trek Civil War history - Gettysburg, Antietam, Harper's Ferry, and the Shenandoah Valley! Needless to say, this Enbrel and happy news will (I hope!) make this trip easier than my mind keeps thinking it will be. My meds and my House MD cane will be trekking around in history mud. I'm pretty excited!