An [Almost] Epic Fail

Here's a little story about something serious that can happen in your relationship when you're living with a chronic disease. 

For so long, all that I knew was my sickness. I had no choice but to put other serious issues that I'd been working out for myself on the back burner. I journeyed far and wide through Relationship Land, and was just getting the hang of actually knowing myself as a single and independent person when I got sick.  

When you watch as the people in your life that you gave your everything to, those individuals being deserving of it or not, take a big dump on your kind and genuine nature, you become broken. You start believing that you aren't worth what you're trying to give in relationships, so you give more. Even when you shouldn't. I call this... the Give Give Monster, and it can also come a-running if you start to feel guilt for something [say, having a disease that you can't cure and receiving limitless care from someone you feel you'll never be able to repay]. GGM began rearing it's ugly head as I became closer to remission this year. Steven had dutifully taken care of me at my worst, and never uttered a word about how unhappy my sad and frustrated behavior, not to mention terrifying hospital stays, had made him feel throughout my treatment. It's only now that his resentment about the painful feelings he had harbored for so long is surfacing. And I find myself wanting to give up countless pieces of myself for our relationship as emotional pay back. 

What he's feeling is so normal, it's scary. He's lived with my disease, too. And I suppose a part of me might  always feel like I 'owe him'. Finding out how to heal together while healing separately is a must. 

Our Crohn's war had almost split us.

Almost.

We've done it before, we can do it again. 

For couples who hope to stay together through a struggle as tough as the one we've known, I recommend a healthy dose of relationship therapy. There's not a damn thing wrong with knowing what you want, and doing everything you can to keep it. I started therapy earlier this year, and Steven and I will soon be going together. If you know that you've found the love of your life, you should fight for it with everything you've got. Just make sure that GGM doesn't put a damper on the joy that you deserve for yourself. Right now, my partner needs me to be strong, just like he was. And I intend to be there for him like I wasn't able to before.

Not because I owe him. Because I love him.

My Friend, Phlegmon

Shooting pain in the lower left side of your abdomen isn't a good sign.  On the right side, if you've still got an appendix, at least you know that he could be the culprit.  But, if you have Crohn's Disease, left side pain is not a nice thing.  I had been out of the hospital just a few weeks when I started feeling a little swollen in the belly and having a strange discomfort.  It got worse over the next week and off I went to BIDMC Emergency.  Again.

It seems as though every time I go into the ER, I am bombarded by heart monitors and swarms of medical staff.  My hear rate has been super high and I am left with those sticky little fellas that hurt like hell to remove. I recommend olive oil and not rubbing alcohol, my skin is crazy sensitive and I have small tears where the stickies were.  This is from last month's ordeal.

Since my regular GI Doc is out on maternity leave, I called within that first painful week and spoke to the fellow who'd taken over my case for the time being.  I told him about my pain, and he said that means my ulceration is 'healing'.  What a stupid thing to say.  Within 5 days of that spectacular response, I was admitted once more.  I had endured huge amounts of pain because I thought I was 'getting better'.  Hooray. 

[I have since been referred to a different doctor on the team and I am much happier.]

After a whole lot of testing in the emergency room, and morphine- which I have never need in the past, we found that I had what is called a Phlegmon.  [We weren't sure if my ovaries were at risk for infection or disease, so ultrasound and a pelvic CT scan were ordered, and once that was out of our minds, we concentrated on this new infection]  A phlegmon is basically a gathering of pus and/ or bacterial infection that pretty much hasn't amounted to anything.  So, pretty much an abscess or fistula that would/ could have formed but hasn't yet.  Kind of like me, right?  All the goods but no formed plan?  Awesome.  At least I can relate to my infections.

If you have a little body, and you're unsure of what your IV needs are, ask your nurse.  They will explain everything you need to know, and they will start your IV very slowly for you if you ask.  Some meds sting a little, and it's really helpful to have a god idea about what's happening.

I was started on two IV antibiotics, which usually work together for things like this.  I had an omental infarction about a year and a half ago, which is another infection- pretty much of the guts outside of your colon.  That was super fun.  Anyway, the two antibiotics are Flagyl and Cipro [those are shorter names for longer meds].  I will be finished with them one month from the initial start date.  Because I needed them through an IV, and we were still unsure of the path of this phlegmon, I had to stay and be monitored for 5 days in the BIDMC suites.  I was in the Farr building this time, a first, and the staff was fantastic as usual.  The only thing about being in the Farr building that I didn't like was the lack of younger people around me.  

I found a dry erase board in one of the computer rooms and made myself a little more comfy. 


There were Therapy dogs in our building!  Their owners, who are volunteers with the hospital, were awesome, and each pup had a great and very friendly personality.  I got to hang with three of them during my stay, and they're a real help when you're lonely or scared.

Ziggy!


Of course, for most of my being admitted, Steven was away on business- this time for two weeks.  That's just the luck we have.  He was in Denver filming for Chrysler, and then in Austin, directing his first commercial for television!  Zipcar!  I am soo proud, and his producer sent him home a day early to be with me in the hospital.  I also had a visit from my friends Rachael and Meg, and it made my week.



I have lots of blog-worthy stuff on reserve from the past few weeks, and I'll load ya'll suckers up soon.  Appointments and meetings that went really well, and some info on new doctor peeps.  Today, I am in some pain.  Healing from an infection like that will leave you with tum tenderness, so you can't rush much.  It gets me out of doing dishes.


I hope everyone had a great Easter weekend.  And if Easter isn't your thing, hope you had a great weekend in general.  I spent mine in Marblehead, healing and having yummy meals with family.  Coloring eggs is always a good time, even if the tattoo-stick-on kind doesn't end up working. 


I feel like I've gotten to a point where I'm gabbing just to gab.  Been a while since I've written and I want to talk forever....  I'l leave you darlings with this.  If you feel like you're in a lot of pain, and that you can 'tough it out', think about your options.  Trust me, you don't want anything getting worse than it has to.  And if you talk to your doctor and get feedback that you're not sure of, don't be afraid to ask another one.


Trust your guts.  Not his.

Flutter Moment

Pain, Pain, Go Away.  And don't come back.  Ever.

I've been waking up in a lot of pain lately.  Every morning, I have a little anxiety that I will roll over and a experience heinous feeling.  Sometimes I'm okay, sometimes it hurts too much to breathe.  One constant though, is that my pup is always snuggled up right beside me when I open my eyes.

With this sunshine, and the added mobility that I've been seeing these days, every morning feels like a fourth grade field trip day.  There's a lot to be happy about, so while I wait for the Remicade and Prednisone to do what it's supposed to, I'll hold on to this paw and smile a little more every dawn.

Hello, Strangers

Been quite a while since my last post.  

Things have been a bit crazy in my posted-up-ness here in Cambridge.  I took a trip to the old Emergency Department on Friday afternoon, to try and figure out why I have been so nauseous lately.  I started a new med last month and stopped it two weeks into treatment because it made me feel sick to my stomach, but ceasing the drug didn't make those awful feelings go away.

It turns out that there's been a pretty nasty virus going around Boston.  People have been in and out of the ED with symptoms of vomiting and diarrhea, dizziness and fevers.  Unfortunately for people like me, with Autoimmune Disorders, viruses like these can do much more damage.  My body suffers a lot more than someone who isn't sick.

The amazing thing? These symptoms DO NOT seem like flare symptoms.  There is no blood, and minimal cramping.  What's happening seems to be virus only, and I am praying as hard as I can that they are!

Some of this is a bit embarrassing, but I always offer full detail in my fight against Crohn's Crap.  

In the hospital, nurses help you with sponge baths.  Here at home, I have been too weak to stand so long in the shower, so I set up a home sponge bath station of my own.  

I also recommend spending as much time as you can in open sunlight.  It's healing!

Pup and I open our bedroom window and expose our bellies to the light!  It feels good and makes the pain go away, if only for a few minutes at a time. :)

I've been cooking when I have energy in the day, and eggs are always amazing!

Add your favorite fresh fruit, and your tum will thank you...

So, while trying to keep from heaving while this virus wreaks havoc on my system, I am moving around with the energy that I do have and fill my body with things that will help me to feel soo much better.

Are you taking care of your bod?

Have a great weekend!

Case of the 'Mondays'

Today, well... today sucks.  There was a blizzard last night in various parts of New England, which left Boston under a butt load of snow.  A butt load.  I usually love the snow, but these days  I have to hobble in it.  You know what happens when you lose your balance in the snow?  I do.

I got to work this morning, after much arthritic frustration, and just sort of lost it.  My mom called as I was changing into my lovely uniform of khakis and a dark blue henley.  It's really sexy.  Then, the tears came.  I was struggling to put on my sneaks as I explained to her how my sucky condition is weighing very heavily on me right now.  My mother has been my best friend, but when obscenities fly from my lips, she is less than pleased... and usually hangs up the phone.  Today, she didn't hang up.  She sighed, told me that she loved me, and that this will pass.  

20 minutes later, I was sent home to rest.  The company that I work for is pretty damn cool.  So what am I crying for??  This last week was amaaaazing.  I spent Christmas with my family in Rhode Island, donated over a foot of my hair to Locks of Love, and started working toward a really great cause.  Let's recap.

I woke up this morning to snow covering our living room window.  Annnd the rest of the windows of my basement apartment.

Garden Level, huh?  More like Buried Alive Level.

This is where I took a tumble.  Good thing the streets were empty.

Brighton got a blizzardy beat down last night.

I mentioned that I donated my hair.  Here's the before shot.

Here goes nothin'.

The first cut is the deepest.  Look at me trying to be emotional and witty.

after, after, after...

I always feel like a seven year old boy, and now I look it.

So, all in all, I can't complain.  I'm looking forward to New Year's celebrations (Mainly to experiment with cute new bows and headbands), but more importantly, this New Year's Eve marks my living in Boston for THREE years.  Yeah, I guess it's my longest relaish.

Oh.  And this was the best gift I got this year.

I told you I'm seven.

Have yourself a merry little Monday.