On Standing Down

Adults make decisions. 

Granted, I live in America and a rather large number of decisions that I witness adults make are rather questionable, if not down right insane. But we're free, and encouraged, to create our own destiny, adventure, or whatever the hipster kids are calling it now. And we're so, so lucky to have that opportunity.

But what about when you've made yourself so informed of the potentially negative or painful results of one decision, rather than the possibility of a victorious outcome? 

OR, you've taken so much of what the people who love you have to say about what it is you should do, that you stop hearing your inner voice?

I'm smack in the middle of making the huge decision of whether or not to start a medication. And I've been here before.

I don't want to be this person anymore.

I'll be honest. The idea of becoming an anti-pharmaceutical crusader and fighting for the natural treatment of my disease and others was an enormous part of my heart for a long time. But I'm sick. And I'm tired. And I feel that if I don't do something soon, I'll be in the comfy wing of the hospital that I know so well, wishing I'd have listened to my doctor. Again.

And blaming her for it. Now, almost one year to the date that I started Remicade, I'm in the exact same place.

I don't want to give up trips, wonderful jobs, and the opportunity for what feels like a normal life. I don't want to hurt my relationships because I'm miserable, or lose parts of myself that I love so much because I'm too afraid to live my life... and I want to smile, feeling amazing and warm, with a baby in my belly. I have to take a leap of faith now and use my brain. I know what a desperate feeling it is to find relief from illness. I know it so well in fact, that I withheld it further from myself because I wanted that healing to come from a natural place. But there is nothing wrong with a band-aid.

If you take it off before it heals into your skin.

For fuck's sake, guys. When you feel it's time to do something, do it. I can always say, with acceptance and self-respect, that I tried.

Because in all actuality, if I don't follow my heart, the only person I'll be disappointing is myself.

In Mexico, It's Called Remicado

I will now vividly recall the events of last Thursday, the day when Remicade made itself apparent as a non-opntion in my Crohn's fight.  Creepy stuff.

I went into the BIDMC Pheresis Unit at 7:15 to start pre-medicating [I had a reaction of chills and lower back pain during my second infusion, and we used Benedryl to help counteract it as it happened].  We tried both Hydrocortizone and Benedryl this time before my Remicade, to pack more of a punch.  

I was nervous at the start, I hate IV lines.  I felt more and more relaxed though, as I watched my favorite Girls- the Golden variety.  I was all set to start my third and hopefully, more successful Remicade infusion. 

I even got my own little tv.

I was super groggy from the Benedryl.  I started to doze a little when I felt the smallest sensation of restlessness in my legs.  I have been on steroids a number of times, and this is one of the side effects.  I have never had them through an IV though, and I wasn't expecting this feeling.  It was a bit strange, sort of just makes you want to shake it right out of your hands and feet.  You can't really do that in a hospital bed, though.  It passed after a couple of hours and really wasn't so bad.  Then, I started noticing that there was a heavy feeling in my chest.  I was tired and breathing slowly, this was more of a pressure that came on quickly.  I couldn't breathe as well, either.  My throat wasn't closing up, but I was definitely having a serious reaction.  

I called for my nurse, loudly, and she came and stopped my infusion.  Within the first 15 minutes of an IV Remicade infusion, and I'm not sure if this is for every drug, you only get 3 drops of the drug.  I wasn't yet that far in, and I was already having a reaction.  My nurse and I sat together as she asked me what I was feeling and helped me to stay calm.  Freaking out when these things happen will only make them feel worse.  You've got to keep calm so you can describe to the people around you exactly what you're feeling.  If you would have blindfolded me, I would have told you that there was a small elephant sitting on my chest, holding down my arms, while keeping his trunk over my mouth.  I just couldn't muster the breath to explain what was going on!  My nurse seemed to understand with the few words that I let out.  Then, the back pain came.  I have had lower back pain for the last few years, only really bothering me if I slouch too much, but this was different.  I had twinges of it during my first baby reaction during the last treatment.  A serious and very deep throbbing, this time.  I couldn't move my back at all while it ran through my spine. 

I waited before breathing, because it seemed to make it worse, but it only lasted about ten minutes after my nurse stopped the drip.  It sucked, but I was happy to learn that this treatment was something that I didn't want to go any further with.  I was bummed, because that meant continuing the search for what might bring relief from the symptoms of Crohn's.

A girl just can't win.

Think about it this way-- if you had just eaten a double burrito with fire ass salsa after a night of heavy beer drinking and needed to drop it somewhere, and this is what you saw everywhere you turned:

You'd be pretty frustrated, right?

I saw my doctor about a week after that whole ordeal, with labs in between and some phone calls about my other medications.  He thinks that Humira is the next step.  Thinking on it, in terms of side effects, it's like taking a step down from Remicade.  I'm happy about that.  I'm not as deep in research as I could be about Humira, but I will be, I've heard alright things.  I don't want to be on any drug, but my phlegmon is worse than we thought, and the bowel wall has been perforated.  It could result in an abscess, which would require surgery and ultimately mean more antibiotics anyway.  All of these drugs take their toll in different ways, and I certainly don't want more than I have.  5 is enough.

I am working with a Nutritional Therapist, a Psychological Therapist, my GI Team, and super supportive family to find out what's going to work best for me.  Time is an issue, and I'm trying to keep stress down.  It's nerve-wracking to have to think about this stuff all day, every day.  I'm becoming more and more frustrated that in every new direction I have turned, I've found another dead end.  I could cry forever.

Fuck that noise.  It's nice outside.

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.

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.

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