"Wisdom comes with winters"

Today I received a package in the mail from an organization I had previously begun to interview with.  I had to pull out of the process due to my health.  The letter inside indicated they were beginning to hire a new round of employees again and were still interested.  It got me thinking about things.

I think we are all wired to thrive off of familiarity, routine, and stability.  Sure, we all love a good adventure now and then.  I've lived in four different states (or districts) since high school. I'm always looking for my next idea that will scare the hell out of my parents.  But when bad things happen, I think the fact that our routine has been interrupted can be just as damaging as the crisis itself.  Whether its a break up, illness, or job loss-it sucks.  Why?  Cause the control is no longer ours.

I have had three years of remission where my health problems were minimal and I managed the disease quite well.  I dealt with it, was able to hide it, and appeared to be normal.  Heck, I even felt normal the majority of the time. 

In those other four years, I constantly worried and knew in the back of my head that at any second my life could be disrupted.  But it didn't discourage me.  As a college student, missing a semester or needing to take a final a week late wasn't a big deal.  But now, I'm overwhelmed with reality.  In real life, you can't take time off.  Am I supposed to remind myself not to become too content every time things are going well for a long period of time?  Or do I just live my life and worry about things as they happen?  Recently I've been overwhelmed with the former.  I miss the old days where I was young, unaffected, and believed nothing could stop me from my dreams, even Crohn's.

I love that I can share the power of such a wonderful thing as healing with all my friends and family.  When I was on Remicade I thanked God every day for giving me my life back.  I'm seeing small improvements in my life on Humira and I'm confident it will only continue to get better as I approach week 6 of treatment.  But I can't help but think about the overwhelming task of putting my life back together once the storm clears.  When I think about it I'm hit with feelings of resentment.  After all of these years, I still pathetically ask, "Why me?"

It's hard having your life interrupted.  It's hard to not be in control.  I have to think of the positive affect illness has had on my character, my connection to family, and my resilience.  Like the Oscar Wilde quote above reminds us, the bad in life teaches us something.  Winter seems awfully bleak in December when we head off to work in the dark and the sun is setting before we even get home.  But when summertime rolls around and it's time for us to enjoy the fruits of the season, we are stronger, braver, and wiser for what we have endured.



Do I dare say that today was a great day?

I dare.  And it was.

Minimal problems, slept wonderfully last night, and had my spirits lifted by a visit from old friends. 

Yes, it was a great day by Crohn's standards.  Hopefully there are more to come.


Updates on my exciting life

I spent a lot of quality time at my sisters last week because she spoils me, lets me watch whatever I want on TV, and because I simply love hanging out with her.  Oh, and because my brother and mom were deathly ill with flu-like symptoms and I wasn't trying to get that shit on top of the crap I already deal with.

But after a couple of days, I missed my boys (the cats, Winston and Franklin; and my dog, Rudy) so I went home.  Big mistake.

I was home less than 24 hours when my sister summoned me back to her apartment.  But it was too late.  The next day it hit me and I was suddenly very, very ill.  Well, at least more ill than usual.  That was on Sunday.  Today is Friday and I finally feel like I got over the bug or whatever it was that hit me.  This is the life when your immune system is compromised.  You catch EVERYTHING.  It was only a matter of time.

On other news, yesterday was an injection day and I must admit I was not looking forward to it.  That damn medicine burns like hell when it goes in.  I've researched and read online that using the syringe instead of the idiot-proof pen might alleviate some of the burning.  The syringe allows you to control how fast the medicine goes in so you can slow it down.  I think I might try that next time.

Crohn's-wise, nothing's really changed.  I have decent days followed by shitty days.  The other night, however, I did sleep about 7 hours straight without waking up and that made me oh so happy :)  

That's all for now.


Ode to family and friends

"You're so annoying.  I like you better when you're sick." - My brother

Yes, my brother said that to me today.  My family seems to judge my healthiness by how sassy I am on any particular day.  I love busting balls and calling people out on their bull.  And when you are sitting around all day every day with a busy house that has people shuffling in and out, you develop a talent for pointing out the dumbest things just cause they entertain you.  I like getting a reaction out of people.  When I'm sick, that sassiness is no where to be found.  Today was an okay day, thus the sassiness was at a maximum.

I'll admit I don't really have much to update you on.  But perhaps the reason I have been a little bit livelier around the house is because the horrid infection I had in both eyes has healed.  After a diagnosis of Scleritis, an infection common amongst people with suppressed and generally wacky immune systems, I was treated with steriod eye drops that cleared those suckers up in no time.  Next time around I won't be so stubborn and I'll visit the Optimologist right away.

I also had terrible mouth sores that have cleared up.  When I get really bad mouth sores, the pain isn't localized.  My glands swell, my teeth hurt, my gums ache.  As if I needed one other thing to hinder me from eating.  Now that the sores are clearing up, I'm not in any pain when I eat.  Referring to my mouth of course, not my stomach.

I'm having the same problems but I find my appetite is much improved.  I still get full very easily and I've actually noticed an increase in my stomach pain.  I do feel like my energy is better, probably because my eating has improved.  I actually have the energy to leave my room now.  According to my doctor, it'll still be 5 more weeks before I feel better from the Humira injections.  I'll be injecting again next Thursday.

I also recently received the latest results of my blood work.  It is amazing how much your blood can tell you about your overall well being.  There are so many different factors that can be measured.  The results didn't tell me anything I didn't already know.  But I think they did make my doctor a little more comfortable with me not being in the hospital.  All of the typical markers of my body fighting illness were off, but not to the extent it's been in the past.  As I tell my mom, I've learned how to be sick.  I know what to do to keep my caloric intake up even when I don't want to eat.  I know what vitimins I'm deficient in and I do my best to take the necssary supplements.

On another more positive note, I'd just like to extend my gratitude for the outpouring of love and support I have received in this past month.  I'm truly lucky to have such wonderful friends both from Philly and Maryland.  And even though I fight with my family, they sacrifice a lot for me every day.   Sometimes I take that for granted.