Healing, It Hurts

When someone with a chronic illness glimpses remission, It's sort of like what most people would expect- a super joyous, exciting and wonderful feeling that, for an instant, washes away any terrifying thought of what it had been like to be sick and waiting for such a day. Some sickies wait years for this feeling, stuck beneath the rest of the world, and I myself am no stranger to it. But what's it like when you're actually in the thick of healing? When you hit the layer of dirt jusssst beneath where the sun shines on the surface? 

Some unlucky and very brave individuals know that there's a roller coaster jammed into that layer. And a tilt-a-whirl. And I can't tell you how many other suspiciously, unsafe-looking pieces of crap machinery there are, meant to confuse the fuck out of anyone on their way back up. 

Fortunately, there are ways to cope with this ridiculously bogus and unfair part of healing. But, it still hurts. You find yourself again when you're body is better, but what no one tells you, is that if you've been sick for an extended period of time, that person you've been waiting to meet again quite possibly may have never ditched his or her unsavory character flaws or deep-seeded issues. Fighting the good [sick] fight turns any wimp into a stallion, but if there were things in there like emotional or psychological issues that were never addressed, the person in the mirror looks less like your old self, and much more like a rhinoceros. I'm not sure why I used rhinoceros there, another part of healing is growing back into your brain's comfy cognition. Never mind the slough of issues that had developed while you were sick. So, what's the best way to heal with your bad self while navigating through your new and exciting life?

Let's start with a basic How-To:

[Unfortunately for you, I never tire of these]

Be Up Front

When you can't remember making plans with friends, or even to be in contact with them, or that you were supposed to keep someone's pregnancy a secret, or you forgot your Goddaughter's birthday, or you went ahead and cried into your pizza for no good reason in front of a bunch of townies at a favorite dive bar and totally freaked out your dude, or that you know you'll DEFINITELY not be participating in any of these online challenges, SAMANTHA, be honest with the people around you regarding why. Staying home and crying to your Puffins cereal is VERY okay. Just make sure you're getting the point across that you care. And you know, write things down once in a while. 

Know When to Call It

Think you might be too emotional about seeing people that you used to, or attending a party similar to those before you were sick, or that you're just not feeling a snug sesh with your ladyfriend or fella? Say so. If these people are worth their salt, they'll attempt to practice understanding, and you won't end up in a ball on the floor three hours later, regretting you left your house.

Apologize for Hiding

Remission means an ebb and flow to how comfortable you are around others. Some days, I just can't do much more than lay around and reflect on how different my life has become in the last year, since reaching remission. Yes, I'm sob/laughing and having full-blown conversations with my dog/ pain management specialist. For me, sometimes that's just necessary to getting through those moments. 

Apologize to [and forgive] Yourself

This is your own. 

But I choose Kung Fu and those orange gummies with the terrible sugary coating. 

When You Need Help, GET HELP 

Save us the time here and just do it, please. It'll be spotty, and you'll blow it off because remembering is painful. But the only way through it, is THROUGH it. Personally, I've been exploring what it's like to have never been diagnosed with a fierce case of ADD. Turns out all of those "attempts" at things make a whole lot more sense, and I'll be better for even trying to understand why. Countless apologies and my incessant thoughts of unwished happiness for wonderful occasions, unfinished collaborations, and never-done favors are something that I'd like to extend to so many people that I care about. 

I sometimes want to tell people who I know are sick, that the journey is so much more than reaching the point that I've gotten to. I understand that communicating something like this should, and does, come with such deep feeling for every individual's experience here. Crohn's Disease both ruined, and saved parts of me. I couldn't be the woman I am right now if I never got sick. I don't regret or hold bitterness for my body. Letting go of that has made this journey much lighter, but I am, and will be continuing uphill for probably longer than I'm anticipating or giving credit for. I can't give much more advice on how to move faster or lessen the load, as I'm still figuring it out. I just want anyone else in the same place on the trail to know that they're not alone. 

The View From Here

Last week, I got sick. Not the kind of chronically sick that I've written about in the past, but a small flu-like infection. This sort of thing isn't an afterthought for a healthy person. Which is how I initially approached the situation- as a healthy person. Because I am now, right? Wronnnng. I've been feeling so great for so long, that I had totally forgotten that the body of a person with an autoimmune disease can take much longer to heal than one without. This isn't to say that every little cold would turn into a three-month infection- I don't want to scare any sickies here- but prolonged fighting for those of us with chronic illnesses isn't uncommon at all. 

I took some doses of Sudafed and drank copious amounts of juice, but when things didn't get better in a hurry I, for the life of me, couldn't understand why.

I guess I've been busy since I went into Crohn's remission last July. I started school this year. I have multiple jobs now, and still do freelance design. I see friends often and hang out with my dog in the park. This is the year I turn 30, and I want to cram in so much of what I simply couldn't in the last few. It seems though, that I'm always running from one thing to the next. When you've got the kind of disease that comes and goes without warning, you take advantage of your healthier time as best you can. You just do. Unfortunately, attempting to make up for the moments you may have lost could turn into your becoming reckless about your body in it's current state and just bring your ass right back to the hospital that you spent countless hours planning your escape from.

I haven't written a Stale Cabbage post in four months. Recognizing a serious health issue is easy when it's your number one job, every single day, for years. When I was sick, I wanted to share my experiences with people who were lonely and scared, who wanted to know more about their sick partners or friends ailing bodies but were too afraid to do it in person. I wanted to create a network of support for sillies who just didn't want to believe that their lives were different. 

And then I got better.

I didn't want to pay any more attention to the thing that stole my life. But as I sit here again, laughing and crying, feeling the pull back to what my situation really is- uncertain, enraging, impossible to map out- I feel it's only necessary to keep myself from turning it away. There's a constant haunting in me to keep in mind that at any moment, I could lose everything all over again. Balancing that fear along with the idea that experience, responsibility for myself that not everyone can understand, and the happiness that brings will lead to healing, is exhausting, and excruciating. Because I'll never really know how long I have until it's time to put the armor back on. 

My reasons for going into detail about how difficult this part is are the same as they've been for every other post I've given. If you are trying to balance a normal life with the fear and actual loathing of a chronic illness, I applaud you. Your fearlessness in continuing to live with each heavy thought is brilliant. Remission is a wonderful, and absolutely beautiful thing. But it is also a heart-wrenching and brutal part of our diseases. Please remember to breathe. Remember to stop beating yourself up about what you can't do yet, and start raising your glass for the things you can [Even when that glass is fulla Pedialyte].Take your time, knowing with full faith that you'll not only be able to regain your self when the storm is over, but you'll become something truly unstoppable in being mindful of the beast you now know. Because your time isn't limited- it's just on a different kind of clock.

So sit the fuck down and relax. You've earned it.

Trees And Apples

They say where one grows, the other doesn't fall from. I call bullshit.

When someone mentions Father's Day, I'm usually uncomfortable enough to ease into another topic very quickly. I have a few great dudes to look up to, don't get me wrong. My uncle Eric is my godfather, and he's awesome. My World Series of Poker-playing gramp is the man, and I can call my step-dad up anytime and gab about anything from video games to menstrual cramps [really]. These cool guys aside, I am estranged from my biological father.

I have the mindset to run from anything that hurts. Even after so many years without a solid relationship with my dad though, I'm still not used to the fact that he couldn't be what he should have. I find it difficult to understand how it's possible for anyone who becomes a parent to not want to drop everything they're doing and do right by their little one. I guess he tried when I was small, according to family, but I can't remember that far.

I have plenty of friends who are children of divorce, and we all turned out alright. Some are like me, and don't talk to one of their parents at all. We probably know enough to get out of situations that we'd rather not bring children into, at the very least. I consider that to be pretty valuable, because I can look to a good man like my boyfriend and expect nothing but smiles if we have babies together. If you know Steven, you will agree. Still, there's this guilt in me. Almost as if- even though I know that I didn't do anything wrong- I should still go to my father and let him know that I carry a loyalty to him.

More bullshit. That feeling just isn't fair.

At this point, reconciliation is a fairy tale. I've come too far after getting sick to waste time stressing about it, and that sucks... But I simply can't afford it. I'm building a career, and finally  healing from a monster sickness. I wonder if he even knows that. 

I'm not quite sure why I'm even posting this now. I haven't been able to find my way for what feels like lifetimes. I wish I had my dad to show me the right way. I wish he knew the right way. And I wish that I wasn't so angry that he never has.

It's Okay Not To Be Okay

To Whom It May Concern:


It's come to my attention that I am unbearably, and undeniably, unhappy. There have been few things lately that make me feel as though I have something to be proud of myself for. After spending so much time wondering what things would be like if I'd ever come out of so many terrifying Crohn's flare moments, it's almost gotten old for me to try for it.  Pieces of me sort of don't even care anymore. Small things that made me so happy seem so difficult to do. Objects are heavy. My body doesn't work like it used to. People are at such faster paces than I am. I don't speak when I'd like to. I resent anyone and everyone for what their abilities are that mine don't- and won't- hold a candle to. I think that I've actually started to hate things. 


I'm writing about this because I should. Because when you're this down, but you still have hundreds of reasons to be happy, you should let your feelings out in words that will prove to benefit you when you decide to read them back to yourself. To say to that sad, weak you, 'So you started over and it was a hell of a lot harder than you thought it was going to be. What are you crying about? You're alive'. I've learned a great deal about myself by exercising this method of therapy. Though I still harbor ill feelings about a lot of people, things, and situations -most of which, do not deserve my shitty judgement. 

I know how hard building my life is going to be. I get small tastes of it everyday. There really is no greater struggle than a struggle within yourself. I'm incredibly angry about what's happened to me. I want to find someone to blame. I want to blame everyone. I'm finally ready for my body to start feeling better, but I forgot how much it used to do. I can't even ride a bike yet. It will take me, I don't know how long, to even get up a hill. I guess I know one thing- after all the peddling I'm about to do, the breeze at the top better feel fucking amazing.


Rant over.


Will someone come over with cookies now?

Petroleum Jelly

Last night I was with my friend Meg, [it was her birthday yesterday, and we baked and stuffed our faces with red velvet cupcakes] when mentioned how when she was younger, her mother applied Vaseline to her skin. It made me recall those teeny rituals that you share with your mother as a young child, and I started to miss some of the ones I shared with mine terribly.

Last Sunday was Mother's Day. I have been far from my Mama for some time, now. We visit, and talk nearly everyday, but I can't help but feel a disconnect from how close we were when I was younger. I'm sure the distance takes it's toll, and I think what might be happening in this relationship- something that has been happening in most of my relationships- is that I am growing away from certain bonds. I'm also more of an adult than I've ever been.

After succumbing to sickness, after being so down and out for such a long time, the thoughts of previous comforts are what get you through when you're struggling to reclaim a sense of normalcy in your life. I had a stuffed bear when I was small that my mother and I named Bones. He was small and brown, and had a red bandanna tied around his neck. The flake that I was- and sometimes still am- I left him everywhere, and when I'd lose him again and again, my mother would somehow find a copy of him in a toy store and bring it home so I wouldn't be so sad.  It wasn't until much later that I realized just what a stretch that was for her, as we weren't the wealthiest on the block. I was a super sensitive kid, and my mom was awesome in helping to keep my anxiety at ease in any way she could. 

This is my courage frog. When I'm sick and need to be admitted to the hospital, I take this little guy along, keeping him close to my bed where he can keep an eye on me when my Mom's far away in Florida. She gave him to me during my first Crohn's hospital stay in Boston.

Can you think of things that your parents did for you, not necessarily to keep you from being upset [though powerful cures may often be needed to subdue the willies, heebie-jeebies, etc.] that stuck with you? Or something that you remember from when you were little that just seems to make everything feel a little better? Maybe the smell of a certain breakfast, or songs that you sang with friends or relatives? I remember my good friend Dina explaining years ago that when she was sick as a child, her mother would make her english muffins with peanut butter. Go Stace! 

I think that because I'm grown, and far from my Ma, I'm always looking for ways to mother myself. These urges come in small doses and pack a punch. I like that. And I can't wait to be the tough little me that I was before taking so much sick time. I'll keep thinking about finding new methods to make myself less scared.

 I still have a newer version of the worry dolls that I used to carry around as a nervous kid. 

Ever have these?

I'm sure I'll get Bones out of the closet every now and again to give him a good squeeze and think about how safe I felt when the both of us fit on my Mom's lap. 

Until then though, this guy will have to do. 

Ciao, Amici.

For a long time now, I've been wondering what I could have done to keep my friendships stronger through my bouts of sickness.  It's heartbreaking to lose the ones that you feel you're closest to.  I can recommend a little help for those of you who are suffering from what feels like bestie-separation anxiety.  

When you're busy, you don't find as much time to spend with pals as you once had.  This happens when you meet a new gal or fella, start a new job, have some farkakta illness, or just find that you need some time to concentrate on your own path.  It can hurt, right?  Not everyone understands, and we usually look sadly at the situation, rather than finding understanding.  Don't!  Just don't. 

That's basically all I'm going to tell you.  Embrace your growth, even if it's in a different direction than someone you'd been close to... it might actually end up helping you to better understand each other as grown ups! 

Talk it out. 

Reconnect.

Share some crap.

The End.  

Let's Talk About Sex

Ohhh, boy.  This may be a sensitive issue.  Hell, most things that I write about are sensitive issues.  That never stops me.  This particular subject is touchy because as I am usually super comfy writing about my Crohn's adventures, what I am posting today involves my significant other, Steven.  

I have been pretty open about the things that I have gone through, with details of hospital visits and even pictures of my insides.  What I haven't been extremely descriptive about, are the difficult times that I have endured *Gasp!* in my sex life.  Because of steroids, complications and infections, I am not as able to... well, perform.  This sometimes creates ripples in my relationship.  I'm sure that Steven is frustrated- I mean we've talked about it- but he never makes me feel guilty because we can't be together as often as we'd like.  When you're very sick and you don't have the normal comforts of life, you certainly don't feel as up for romping.  Even if the person you're snuggling up next to is the love of your life.  Sometimes, you just can't.

And that's okay!! 

Sure, it's a bummer.  Yes, I want to rip my guy's clothes off most days.  Can I?  Not usually.  I have been a bit conservative in my span of activity, and I'm happy about that.  Sex was never something that I didn't take to heart, and you should feel the same way, especially if you're sick.  Letting someone into your life while you're struggling with sickness is hard enough.  If you're getting down with someone, you need to make sure that they really care for you as a person.  Living with an autoimmune disease can mean serious risk of infection.  What your partner may live with, even if it's a little more yeast than you've got, may be dangerous for you.  It's important to be able to talk things like that out with someone that you'll be that close to.  I have never been more serious about anything I have let you suckers read here.

If you're freaked out about having the conversation- don't have the sex.  You don't have to, and any small twinge of that feeling might mean reevaluation of your current closeness, at least in my opinion.  

I have a therapist.  She's nice, and soft spoken, and makes me feel at ease when I speak.  More often than not, and this could be because of the heavy medications I'm on, or just due to my general spaciness, I lose track of what I'm saying as it comes out of my mouth.  When I touch on a subject that can get a little uncomfy in conversation, I tend to lose conversational direction.  I seriously just lose the words.  I probably try to subconsciously stop myself from sharing my real feelings.  I'll let Dr. Krinsky do the deciphering.  In any case, talking about things like sexual frustration can really be helpful.  It can also be embarrassing, but you have to remember that it is just another hurdle.  If you don't approach those hurdles the right way, you'll end up in the fetal position without a clue how to survive.

And I don't mean just in the bedroom.

Open your yap.  Other people are probably dealing with some of the issues that you are.  Sex is natural and healthy.  If you're missing out on closeness with the person that you love because of your sickness, it really helps to talk about it.  Trust me. 

Because I am totally red-faced right now... and I'll bet you'd never judge me for it.

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.

Woah-Man Up

This week has been a whirlwind.  Quite the doozy of a Crohn's adventure, not to mention in learning more medical vocabulary.  I just spent another 5 days at Beth Israel, and I haven't even blogged about the last damn visit.  I'll start with last month's, and give a little detail about my first Remicade infusion as an out-patient process.  Ish will get real.  Hold on tight.

Last month, I relapsed.  I thought I was getting better and my magic meds were working.  They weren't.  I relapsed and almost died.  84 lbs. isn't much to weigh, and it's absolutely NO fun receiving vitamins through IV, let alone hear your doctors talk about Total Parental Nutrition [or TPN], a process in which your food is tube-fed to you.  In cases when this is necessary though, all systems go.  A girl's gotta eat, right??  But making that decision is scary, and can be dangerous.

I was lucky enough to have been able to attempt** finding remission without TPN, despite the severity of my colitis.  With Remicade.  I had been running from this drug for almost two years when I finally made the decision to treat my disease in a much more aggressive way than I did in the past.  Infusions scare me.  I hate needles.  Side effects of this drug are terrifying. There's a 1 in 10,000 chance of Lymphoma.  

I had no choice but to suck it up and make my decision.  Dr Flier stood at my bedside in the Stoneman building, a place I know well, with a belly full of baby and a look on her face that made me want to sob.  She was going on maternity leave in a matter of days, and she and I both knew that I would be starting this new adventure without her.  We tried it my way and that didn't work.  The next step is to brave the darkness and make a new effort.  It was this, or lose my colon.  My Godparents were in my hospital room for the discussion, and my Godmother [who had undergone chemo and continues to be one of the most amazing woman I have ever known] rubbed my back as we asked a number of questions regarding treatment, side effects, and my chance for living what would feel like a normal life.  I cried the whole time, but after years of wondering if that would even be possible, I have to admit that sitting in a comfy chair or bed every few weeks while an IV gives me what may keep my serious pain away- didn't seem like such a terrible thing, in comparison.  I agreed to start the infusions, and we made it a reality two days later, on February 29th.

I was still in my hospital bed, IV chilly from earlier saline, magnesium, potassium, and iron infusions.  My nurse was incredible, and made me feel comfortable as the the IV began to drip what may prove to free me from the hell I'd been living for so long.  Steven sat holding my hand, and I gripped my stuffed elephant Emma as we watched and waited.   And you know what?  It didn't hurt.  It didn't didn't do anything that I was scared of.  I had no reaction, other than a sleepiness that couldn't be shaken.  Now that I think back on that, endorphin fluctuation may have played a serious part in my zonking out.  I stayed at Beth Israel for a few more days, as staff watched my weight, and food intake.  I left weighing 87 lbs., and honestly, I felt great.  

On the drive home, as the snow fluttered, everything felt like slow motion.  My mind was racing.  Every possibility, every hope that I had for my life came rushing back in a flood of emotion.  'I'll be strong.', I thought.  'I'll waste nothing.'  

It's absolutely inexplicable, the loss you feel with a disease like mine.  I wake up after a flare, and years of my life are gone, months at a time.  And I feel it, that's the worst part.  I watch it happening, as friends fade from sight.  I am Wesley in The Princess Bride, watching years of my life being burned from my body, as I'm strapped to some torture device.  You hate your job, right?  Everybody does sometimes.  But, you have a job.  You can get up and walk to your car in the morning and drive there, whether or not you feel as appreciative of it as I would, right?

Appreciate that.

Just before my first Remicade Infusion in BI's Pheresis Unit.

After I was discharged, I had to wait a little longer than usual to have my second Remicade infusion.  Usually, you start out every week, then every 2 weeks, then 4, 6, and finally, every 8 weeks.  I was waiting for insurance to cover what I needed.  If you're not signed up for the right program, Remicade can be very costly.  Do your research and apply for help.

This next part is crazy.  Something that I never knew I'd feel.  I went in for my second infusion at Beth Israel's Pheresis unit.  I walked into a long room with windows on both sides, full of nurses and rows of beds.  There were a lot of large machines.  Some I had seen before, some I wondered about.  I felt a combination of guilt and solace.  I was walking into a room where people were receiving chemotherapy.  I felt like an intruder.  Like my disease paled in comparison to what some of the souls lying in the beds around me had endured.  And I cried.  I cried for my aunt, who had breast cancer and died.  I cried for my Godmother, who had breast cancer and lived.  I cried for great friends who have lost parts of their guts to the disease that we live with.  And I cried for being such a weak, weepy baby.  I sat in my small, curtained room at the end of the hall, Steven opened his computer to work as I received what I needed, and we started treatment.  An IV was inserted, and I tried to make myself comfortable.  I was about an hour into the infusion when I started feeling differently.  My lower back throbbed painfully, and I had very serious chills.  Nurses came to my side, and stopped the drip.  I was having a reaction.   Great.  This was what I had been terrified of.  I was then given Benedryl through my IV, and we waited.  Then I developed a fever.  It got as high as 102 degrees before I took some Tylenol to help break it.  Low grade fevers are common with Crohn's Disease, but when they start to climb, it can be a serious cause for concern [I have a thermometer close to me at all times in my home].  We waited again, and after about two more hours, we started the Remicade again.  My back started hurting a bit once more, but we continued.  I fell asleep and woke up to the beeping of the IV machine, alerting us to the empty Remicade bag.  I had done it.  It was a shitty ordeal, and it lasted 7 hours instead of the usual 2, but it was over.  Knowing that I had to come back soon didn't even bother me- I just wanted to get the hell out of there.  

I survived.  It wasn't the most comfy day, but I've had much worse with my Crohn's, and I think that if the worst that Remicade will sling at me for now are a few back aches, I'll stick with it as we decide if long term use is right.  My Crohn's symptoms seem less intense, and I'm gaining the weight back that I desperately needed.  I'm waiting to break 100 lbs. and I am finding more and more energy to do the things that I missed for such a long time.

Don't be afraid to take chances.  Don't be stubborn.  Listen to your doctor sometimes... and while I don't- and would never- encourage anyone to abandon their beliefs, I am a little more humble in knowing that opening my mind to alternatives to alternative treatment may have saved my life this go 'round.  Do I plan on being on this medication forever?  No.  Would I recommend it to anyone else yet?  No.  I am going in for only my third infusion this week.  I am saying, that at this moment, Remicade was the right choice for me.  Don't stop researching.  Don't stop wondering if new things can help.  Don't stop smiling, and most importantly, don't you dare take anything for granted. 

Be brave.  You're a lion.  Your body is yours.

I am so glad that I may be getting mine back.

Mean Girls

Let me paint you a picture.

Yesterday on the train, on my way back from a short visit to Faneuil Hall, I overheard two girls talking about their mutual friend.  They were meticulous in attacking her physical features and the status of her love life, as well as her inability to dress stylishly.  Then, they started gabbing about how they will look better than she does at her own party this weekend.

I wanted to close my book, stand up and cross the car to ask, 'Really? Really??'.  I don't know of anyone who actually does this, so I refrained.  But I would have liked to wake these biddies up if I could have.  Hearing girls talk like that about other girls really chaps my ass.  We're supposed to be sisters.  Was my Grandmother lying to me?  I didn't think so, but the state of our sisterhood is in serious shambles.

 

Gossip.  We've all been a part of it in some way, and drama inevitably seems to find it's way into our lives.  It is how you react to less than lovely conversation that can keep things harmonious in your own life, and in the lives of your pals.  Watch your mouth, my dears... You never know who's listening.  And if you have to check your phone to make sure it's off before you start talking- take that as job one in getting your ish better handled.

We can absolutely change female interaction for the better.  We just need to loosen whatever's too tight and keep our ears out for our own insecurities.  If we aren't careful, they will kill our strong and beautiful species.  Until then, when you overhear other women talking about each other in a shitty way, remember how much it can hurt, and make sure you aren't making a habit of doing the same [I'm not forgetting about you either, fellas].  Because being a good friend and genuine person is easy.

 

Duh.

Go On And Wander

I ventured out a few times this week, on trains, buses, and foot, to numerous places around Boston.  It's awesome to get out again.  The weather is wonderful and Cosmo and I have welcomed the opportunity to jump back into the swing of things.  Our 'swing of things' is a bit different than yours, but I'm sure we are seeing some of the same lovely sights that you are in the  awesome spring sunshine.

Train stations always made me a bit nervous, having lived in Florida for so long.  Transportation was a whole new World when I got to this city.  Nowadays, I can climb into a crowded train without hesitation.  The people watching is absolutely superb, and if you know to keep your things close to you and avoid creeps [which I have actually not even had personal interaction with], you'll be just fine, too.  Even my pup keeps a positive attitude.  We have a lot of fun zipping around from station to station, mainly exploring and finding new places to visit because our strength is back up, up, up!

The other day in the Porter Square T Station, I stumbled upon a pretty cool operation.  Someone had left numerous books on two long shelves, as if to offer them to passersby.  I thought, 'What a cool idea!', and wondered who was so awesome, to leave books there for takers, with a small jar for the amount of money that the purchaser felt necessary to leave for what they took.  So cool.

[There was a whole other side that had books lined up, too!]

If I could have afforded to, I would have left some money in the jar for who had left it there, just for giving people the opportunity to read good books.  Reading is one amazing thing that we can give ourselves that really means something.  We can become so many amazing things with the opportunities that we have in this country and in our educational resources.  I'm really thankful for that, and plan to exercise my right to power up my knowledge.

You can find some really awesome things when you're not looking for them.  You could probably sit on a damn bench and just watch things roll by that teach you lessons.  Another gift we have is the ability to close our mouths- and open our eyes and ears, to get out there and experience. 

Go on.  Go.  It's nice outside. 

Side note: I just finished The Catcher In The Rye.  I thought it was adorable.  I had never read it, and I thought it was cool to see things from the perspective of a teenage boy.  Not being sure about what you want to do in life, not even really being sure if your feelings are straight.  I could really relate.  Because this starting over thing, it can be a real pain in the ass sometimes...  even on the sunniest of days.  Though I don't look it much these days , at least I'm past that whole puberty thing.

Teeth

Everything happens for a reason.

Is this something that you believe to be true?  How many times have you been able to look up from a less than fulfilling situation with those words hot on your lips?  It may take a while, but you could always get to a place after a great deal of stress where you may be able to say those words and mean them.

When we experience hardships, and we can't ask, 'Why?  What did I do?', letting these hardships sink in as bumps in the road can be super hard.  To be able to take things as they come shows huge strength of character.  Not enough of us show that when it is most important.  But we do show our teeth.

As not much of a surprise, my pup has shown me another valuable life lesson recently.  When I attempt to clean him, move him, keep him from certain doom, he shows his teeth.  I am being generous when I say teeth.  It's more like one teeny k9 tooth as if to say, 'I know what you're doing.  I know that it's going to be good for me.  I may even be thankful.  But I don't like you making this decision for me.' Who would?  When we can't make our own decisions, it feels crappy.  Especially when we're sick.  I hate knowing that seeing chocolate cake will trigger something horrifying within my soul that will either fizzle at the thought of pooping all night or, make me become so ravenous that I have no choice but to throw my entire body into the frosting.  What keeps me from making awful decisions, like not listening to me body, is the responsibility I have to keep it as healthy as I can. 

I'm sick.  There's a chance that I could always be flaring.  The Reason?

I don't know yet.

But it probably has something to do with talking about it to people like you.  Hemorrhoids and all.

Thanks for reading.  Remember that when the people close to you are honest with you about what you may be doing wrong, they voice it because they care.  So put those teeth away for a second and ask yourself who deserves to be snarled at.  I struggle with  this, so I'm giving you a pretty handy tool, here: Lovers gonna love. 


So shut up and let 'em.

And be thankful.

Dreaming Awake

The past few weeks have been quite eventful.  For those of you that know and have been able to follow what's been going on, I spent some time in the hospital recently, receiving treatment for a Crohn's flare that for some time, I thought was a virus.  I was treated with steroids for months for a bitch of a flare that I had encountered last Summer [due to a drug called Mobic], and upon tapering around Christmas time, I relapsed.  Hard.  I just didn't know it.

I went to the E.D. about 3 weeks ago for what I thought was a contagious stomach virus that had been going around Boston.  I was severely dehydrated, which caused the Emergency team to focus on my rapid heart rate.  I have a history with blood clots, so they were spot on in researching the cause of my heart fluttering, but they had neglected to address my actual symptoms.  After giving my IV fluids to combat dehydration, I was sent home.  The problem was, I had been vomiting and having diarrhea since around the start of the new year.  I lost a lot of weight, and really just needed to figure out why I could keep nothing down- or in.

I had gotten so weak in the following weeks that I started experiencing dizzy spells, and Steven and I decided that it was time to visit the Emergency Department again, this time to figure out WHY I hadn't been able to shake these awful symptoms.  

I was admitted, and imaging was done to figure out what was going on.  An abdominal x-ray was given, I was given more fluids- with difficulty finding veins that would take an IV- MY WORST NIGHTMARE, and electrolytes to help with what had been depleted during my regular barf sessions.  A chest x-ray followed, to rule out any other strange infections, and I was also given an MRI with contrast to get a closer look into my belly.  What we had found astounded me.  I had been going through this virus-like sickness for over two months, and had NO idea that it was in fact, a full on Crohn's attack.  I had no blood in my stool, and experienced NO regular Crohn's pain.  Just your typical, 'I need to go to the bathroom' pressure.  It came as quite a surprise when my GI Specialist came to me in my room after I was admitted to explain that my entire colon was inflamed.  She was worried that waiting too long and trying steroids would be detrimental to my health, not to mention cause us to lose more time in our attempt to stop the disease in it's tracks.  I had been given the option to start Remicade, an infusion treatment used to treat Crohn's and Rheumatoid Arthritis in the past, but was reluctant to start it because of side effects.  Dr. Flier had explained that if the benefits outweigh the risks of a drug, it could be worth trying if nothing else is working.  My aunt, uncle, cousin, and Steven were there with me when I received the news that my bum had gotten so bad, and we decided that starting the Remicade infusion would be the best thing to do.  

Over the course of the next few days, I was given potassium, magnesium and iron infusions.  I was placed on a low residue diet with supplemental shakes in between meals that were given every three hours.  After being so sick for so long, my weight had dwindled to a sad, 84 lbs.  I have never been this small in my life.  The day before I went into the hospital, I had dreams that I had to say goodbye to everyone that I knew and loved.  It had actually crossed my mind that I could be dying.  I pay attention to my dreams, and when lost loved ones visit me during the most powerful ones, I watch out even harder.

My love, sleeping next to my hospital bed.  He hardly EVER left my side.
So incredible.

I can't believe that I had gotten so sick.  I am always 'okay' when I flare.  I am pretty much laughing the whole way through things.  I have always had my sense of humor and taken things as seriously as I needed to, but this was the most terrifying experience I have ever had.  I started Remicade treatment while I was still in the hospital, and I have been home for a few days now.  The infusion itself was what scared me away from receiving the drug for so long, but it wasn't bad at all.  I had a heating pad on my arm- ad nothing stung or itched that way that I had thought it would.  I had no awful reactions, and am still feeling quite good after being sent home.  I am waiting for my insurance coverage to make sure that I can have my infusions regularly as a part of my treatment, so that part is really scary.  I know that it will be alright, and that I will qualify for what I need to in terms of having my treatment, but for a lot of people Remicade can be VERY costly, so I am looking out in every direction for the right paper work to make sure that I am covered.

You HAVE TO cover your ass when it comes to health care.  Make sure that you know what you can be covered for, especially if you know that you're about to start a treatment that you won't be able to stop.  Research this sort of thing BEFORE you get so sick that you don't have a choice in the matter.  That's my advice.

I want to give a huge

Thank you

to everyone who has shown me support through this incredibly hard time.  Steven has continued to be my rock, and I am grateful for every kind word, every sweet thought that people have sent my way.  I want to show you all just how strong I can be in my healing by staying in contact, being as sociable as I can, and remembering that everything can be taken from us in an INSTANT.

I'm wearing 'Johnny', by BIDMC.  I can get you one, on the hush hush, it's couture, no big deal.  

Man, eating every 3 hours makes you realllly sleepy.

Going home, a little more recharged with vitamins and love from around the clock care.

Once again, thank you from the bottom of my bottom.  Without the strength that I have gotten from friends and family, I would have NEVER been brave enough to get through this.  I am growing stronger everyday, and with more and more energy I am able to start living my life the way that I had when I was healthier.  Little by little, though.  I am very used to baby steps by now.  And I am finally in a place where I am not scared to LIVE. <3

Is Anyone There??

Sometimes I feel like when I need to get my thoughts or feelings out, screaming is the only way to do it.  I keep thinking that because I know a lot about being sick that it puts me at an advantage.  Am I all wrong?  Is it better to stay uninformed and wait for Doctors and groups like the CCFA to tell me what I should be eating [yeah, right... lots of help there], or what drugs to be taking?  Because I just don't understand something right now.

Real Recognize Real, right?  So why do I feel like such a douche when I know straight off the bat that a Doctor or Crohn's 'Survivor' is full of it??  When I know full well that the drug being pushed to me is new and that there is absolutely NO cure for my disease?  It doesn't even put me in a bad mood, because I understand these things and know enough to keep myself safe.  But what gets me is that SO many people put their faith and understanding in people that seem to know what they're talking about as far a curing their own Crohn's [more bullshit], and they'll share it all with you for the low price of blah blah blah!

[We are all survivors of this disease.  In this post I refer to those who claim to have discovered their cure and actually have the balls to charge you for it.]

We need more people who know the real deal.  The raw deal.  We deserve it.  Because we are the raw deal.  And I swear on a stack of Bibles...  Our sob stories, this real shit-- it will be heard.

Because trust me, you'll be hearing it coming from miles away.

I'm am so sick of this ridiculousness

What It Means...

...To Be Sick.

Having a serious Health issue means having to know the difference between fun, and hurting yourself.  Too much energy used one day could predict the next to be fairly uneventful.

It means picking and choosing from equally beautiful days, just which ones you'll be allowed to enjoy.  Sometimes going outside is hard, especially when you're legs don't work as they once had.

It means repeating yourself, explaining what your disease is over and over, because most people don't know what it's like to have one.  Don't lose your patience with them, but HELP them to understand.  You may find that with a little time, they'll actually grasp some of it.

Being sick means missing, and even losing, friends.

Out of sight, out of mind, right?  You'll get those surprised, "How are you?"s that you hate, because you know that deep down, they're thankful that they're okay and most of the time won't actually want to hear your entire story.  But, and know that these are my most honest words, the truest friends will have your back for as long as you carry your plight, and even longer.  They'll ask questions, and wait for you to have the energy to explain the answers, even if you think you can't.

It means learning about your illness, and other illnesses.  When you've got so much down time, reading up on what's going on with your body can be scary-- but it's smart.  I learned quite a bit with my good pal google during my roughest times, and saved a few trips to the hospital by being able to calm myself down with explanations of the complications that came along with my disease.  [Just make me, and yourself, a promise... and never use google images.]  We're out to learn here, not give ourselves hives over what horrible conditions others have had and in turn, think that is happening to us.

-- I have to interrupt myself and add here that this year, I am inspired by a lovely group of creative and interesting people.  They do amazing things everyday!  [Even if one of them is my upstairs neighbor, and her contribution is singing at the top of her lungs to music that I can't even make out, but I know that I love.]  So... for that, I thank you all. --

It means learning trust.  When you're forced to rely on others, and your parents can't be around, being sick makes it absolutely imperative that you surround yourself with those who will love you as unconditionally as it takes to help you wipe your ass when your hands are swollen into fists.  Thanks, arthritis.  This process can be pretty painful.  Heed my warning, be careful who you let too close.  

It means learning you.

Your strengths, weaknesses, and a whole lot of thought processes you'd never imagined you'd even notice.  This is probably the scariest part.  I promise that it will be the most rewarding.  Ongoing and sometimes exhausting, with the highs and lows of the Grand Canyon, but ultimately- very rewarding.

Being sick means putting aside the things you love, opportunities to build your future, and sometimes even having a love life.  You've got to put your 'now' self first.  Now.  Trust me.  If that boy doesn't understand that you've gotta be in bed by 10:00 on a Saturday because you won't have the spoons to wake up Sunday morning and get your laundry finished before this work week, ditch him.  Wait, wait... what's that?  He's that cute?  I don't care.  There are plenty of other beautiful-spirited gentlemen out there who really DO give a hoot about you, and your sick little body.

It means learning that we are given second, third, even fourth chances to revisit our once-possible opportunities.  All that jazz I just wrote about giving up the plans you had made?  For one reason or another, they weren't meant to happen for you just then.  And believe me, when they come around again- and they will -they feel even GREATER.

Being sick.  Sick.  I haven't even begun to sum up what it means to be sick, because for so many people, it's entirely different.  I do know, that despite the pain that you're in, no matter how lonely you feel, and whether or not you're able to get up today, you're amazing.  You're loved.  You're the only you.  And it's your job to show this World your fantastic journey, because even if you reach one of hundreds, you've reached that one.  Maybe he or she hasn't had a go-round on this bullshit carnival ride, but you can be the loving and able hands to buckle the safety harness so that they know a little more about how to keep their eyes on one spot as they spin.

I keep my eyes on my loved ones.  My dog.  My going back to school.  Going back to work.  I choose to make my 'sick' what I want to make it.

I have the highest hopes for myself. 

And for you.

Make this year yours.

Talking Threads

I finish my Prednisone treatment in 20 days.  It has been a long time since the word 'Remission' was one that I could use proudly, as though it could be regarded as something I could actually get my little body close to.  Through this ordeal, I have been sad, scared, mortified, poked and prodded, angry, and down right mean.

The only place I seem to have been finding solace in, is my bed.

During the afternoon, the sunlight that peeks through my bedroom window is gorgeous.  Cosmo and I make it a point to be 'Sun Babies' for a little while everyday.  We love any excuse to snuggle, and the vitamin D makes us feel gooood.

I have been struggling with the anxiety that I can only assume comes with entering remission of a chronic disease.  I'm overjoyed to feel well again, to know that even if for just a short time, I'll have a sort of reassurance that, I'm 'okay'.  But how long does that last?  I hadn't been sick for years, and KA-POW-- I was thrown belly-first into the worst flare of my life.  Does the fear of that happening again ever really go away?  I'm a fighter.  I know this.  There are just always going to be a few things that scare the hell out of me.

Like the thought of having to dig that wheelchair out again.

I've started building back some confidence in body image.  When someone with Crohn's Disease has a rough flare, they lose a lot of weight.  Exercise is limited, if not totally halted, because even having energy to use is a frigging luxury.  I was afraid of wearing dresses because I thought that my legs were too small.  

Now I'm comfy with drawing attention to them with silly tights.

Those feelings of insecurity are still with me, but through the lovely winter, I will have the option to show a little skin in fun ways while being totally alright with bundling up.  I do love my sweats.  To think that I stayed indoors during my healing because I felt too 'sickly looking' to show my face around friends kills me.  I never want to live that way again.  Jumping back into a social scene is terrifying.  I feel like I've lost any social skills I ever had prior to this flare.  Bogus.  There is a series of things that have got to be learned all over again.

So, I will continue to try and get myself back to the old me.  The social, happy me.  In work, and with the groups of lovelies that I have been blessed to have in my life.

My girlfriends have graduated college and started careers in the time that I was sick.  They never stopped trying to get me to join our pals.  I just couldn't.  So now, in their adorable apartment, they do fun stuff like have Tupperware parties.

And I bring the handsome sap that surprises us with yummy snacks.

[Total Romantic.]

It will be tough to get myself back out there.  Work options are slim, and confidence has dwindled, but I'll get back on the right track again soon.  Either that or I've got plenty of skill in lounging... if anyone's looking for that sort of thing.

Ohh... and one more, VERY important thing.

Happy Birthday, Mama!! xxo

Have a great weekend!