No rules

My Remicade infusion was today.  Hard to believe how quickly these come up all the time.  I felt extremely tired today as the biologic was being administered.  I had not felt this run down by the drug since prior to my pregnancy with Preston.  I've talked about how my allergies went away during my pregnancy.  My little sweet P gave me all sorts of immunities.  Over the last few months, slowly, these have really started to wear off.  More and more every time.  I'd say, Remicade is almost back to knocking me right out a couple hours later.

I didn't feel tired enough to go to bed at 6:30pm, like I used to do prior to being pregnant, but I certainly didn't have the energy to do much.  I caught up on Survivor and General Hospital.. 4 episodes of it.  Thank you DVR for allowing me to fast forward commercials, or I'd still be on my second episode!  The last episode had scenes with my favorite character - Elizabeth Webber.  She started on the show in the late 90s and played a teenager.  I was a teenager at the time, and liked the edgy side to her character.  She became half of the next supercouple, along with Luke and Laura's son Lucky, who was portrayed by the excellent actor Jonathan Jackson (not on Nashville).  Over the year, Liz' character has been put through the ringer, yet she still manages to be portrayed as sweet, loving and lovable.  The story-line that should define her most though, is the loss of her 3 year old Jake, who was hit by a drunk driver - small world, her ex-father in law - Luke.

My mind likes to wander.  When I'm tired, as I am now, I don't have much control over where it goes.  Liz doesn't mention Jake enough if you ask me.  Of course, she's a fictional character, but I feel like they should portray her thinking about her son more often.  Perhaps melting down here and there, because she sees a little boy that looks like him, or finds one of his toys under the sofa as she cleans.  I've watched General Hospital for a long time, and I've seen how "people" can react to traumatic situations.  Sometimes, as we see other people going through certain situations, in our mind, we make the decision of how we would react and feel if put in other people's shoes.  Having seen the scenes where Liz loses Jake, I imagined that I would have reacted the same way - complete hysterics.  At the time, I didn't know I would have a son.  At the time, I didn't know that I'd lose a child.  Was it foreshadowing that I asked myself how I would react in her shoes?

That's not how it went down.  I remember screaming.  I remember crying.  And then I remember feeling nothing.  Numbness.  Paralysis.  Indifference almost.  I was upset at myself for not being hysterical like Liz had been.  I was confused.  Did I not care?  Of course I did.  I know that now, but grief can be really evil and implant thoughts in your mind that aren't true.  Like all that guilt.  The guilt was there from day one, and it's always hiding in the shadows, even today.

The point of all this... There may be books, TV shows or movies that tell you how you should feel in situations of grief.  Grief has no rules.  You may expect to react a certain way and then you don't.  That's okay.  Feel what you have to feel, and know that you aren't doing it wrong.  Don't place too many expectations on yourself when you are grieving.  Setbacks will happen, I'm sorry to say.  And if you do react the way you expected, that is just fine too.  Just take it, one day at a time.  If you have to, just a small moment at a time.

Remicade, doctors, nurses and modern medicine

How appropriate is it that on day 13 of my 30 days of gratitude challenge that I be grateful for Remicade, as I am currently receiving my treatment?  In that same vein (ha-ha), I am grateful for my doctors, nurses and modern medicine itself.

If you are unfamiliar with Remicade, it's a biologic that acts like artificial antibodies and it is administered intravenously to treat Crohn's disease (like in my case), rheumatoid arthritis, ulcerative colitis and a couple other autoimmune disorders. The frequency of treatments can range from every 6 to 10 weeks, I believe.  Mine are every 7 weeks.

In 2012, I was oblivious to how much Crohn's had destroyed my body.  Here I was humming along, thinking everything was under control when in reality, I'd just been living with it for so long that it was my new normal.  Abdominal pain every month was normal.  Even when it happened every week it was normal.  Lack of energy, sleeping for extended hours was routine.  When I experienced my first blockage in May, I'd only experienced more pain once - when my gallbladder had gone septic in 2009.

And so, my GI doc got me started on Remicade in May 2012.  I'd heard of it, but I was trying to live sans medication, especially since we were trying to start a family.  After weighing the pros and cons, we decided that this was the best course of action for treating my case of Crohn's disease.  Unfortunately, the scar tissue had built up like crazy in my bowels after decades of inflammation and healing, and inflammation and healing, therefore narrowing the size of my bowels...  Because of that, even though I was on Remicade, I ended up with another blockage in September and made the decision that I should have surgery to regain quality of life.

I'd wanted to put off surgery for as long as possible.  When I was first diagnosed in '99, my doctor at the time had told me that once you have a surgery, it snowballs, and you just end up needing more and more, with less and less intervals between them.  After discussing this at length with my GI doc, my husband and a surgeon, we came to the conclusion that a) I needed some kind of quality of life, b) Remicade is a "maintenance" drug that should keep the symptoms, inflammation, flare-ups at bay and c) in order to have a healthy baby, we need a healthy mom = me.  To my amazement, this was a surgery that could be done laparoscopically, and my surgeon had been dubbed a miracle worker by my own GI doc (who's pretty incredible himself!)

I've been so blessed with wonderful doctors in the past years.  In addition, I've been blessed with extraordinary nurses.  I've come to learn that they are so under appreciated.  So if you are a nurse, know that the world needs more people like you - you have great bedside manners, you have empathy, you have patience.  You know your stuff, and your presence eases our mind when you are present.  My hospital stays have not been a fun time.  They've been filled with pain.  Filled with hunger.  Filled with feelings of entrapment to a certain degree.  When you are stuck in a room and you aren't on narcotics, but you can't do anything.. you start to go a little stir crazy.  My most recent stay was supposed to be a happy one - and while it had happy moments, it was really scary.  My son, Preston, was so tiny.  He had no meat on his bones when he was born.  He wouldn't eat when we tried to feed him.  Having him go to the NICU, at the time, was the hardest thing I'd ever had to do.  But, he thrived in there, making headway every day.  Getting stronger every day.  And I can't thank the nurses enough for giving him that chance. 

If it weren't for modern medicine, for the incredible doctors and nurses I've crossed paths with, I don't know if I'd still be here.  Perhaps I'd have no quality of life.  I probably never would have been able to have Preston.  I could be dead myself.  Preeclampsia, and high blood pressure have taken many lives I'm sure.  And while, losing your baby, can feel like total hell, I'm still thankful that I'm still here.  I'm thankful that I've had the strength (and help) to survive.  I'm thankful because it allowed me to have the most wonderful little boy in the world.  I'm thankful, because my husband needs me.  I'm thankful, because, life isn't always roses and butterflies, but every now and then, there are rainbows and bunnies...which makes life worth it.  Cherish every fleeting moments of happiness, even if they are few.  They can make a world of difference.

Slow healing wounds & patience

For as long as I can remember I've healed slowly.  Mosquito bites seem to stay forever.  When I catch a cold, I can't shake it for several weeks.  I "bruise like a peach", to quote Joey on Friends referring to Ross.  And when I get a bruise, I seem to stay bruised forever.  I've been this way for a long time.  I've read several articles that seem to link slow healing with auto-immune diseases like Crohn's.  Additionally, I feel like Remicade is adding another layer to delaying my healing powers.  You see, the way Crohn's works is that my immune system will attack good cells instead of just sick cells (like infected mosquito bites cells or common cold cells).  Remicade causes my immune system to stop attacking healthy cells, but at the same time, it stops attacking the sick cells too.  This is especially true in the first couple weeks following my treatments, which are currently every seven weeks.

I feel like I've grown to be a very patient person.  In part due to waiting for days to feel well enough to accomplish more than just the necessary tasks to get through each day.  In part due to waiting days, weeks, months to not feel abdominal pain.  In part due to living without my husband for almost a year before being able to move to the States.  And many other instances, but I think those are the most defining things that have led to considering myself to be patient.

The healing process that comes with losing a child is a very slow one.  It requires patience.  Patience to get used to the new reality.  Patience to allow certain feelings to subside: guilt, anger, sadness, numbness, devastation, to name a few.  Patience to understand that these feelings may suddenly re-emerge months, years later.  Patience to deal with others, who don't quite know how to react, who don't know what to say.  Patience with regaining certain feelings: joy, fulfillment, enjoyment, peace.  Patience to deal with others who are also mourning your loss.  Patience with others because they are able to return to their lives as if nothing ever happened.

I may not have lost Preston years ago, but I did have at least one miscarriage.  I think I had at least another one but I'll never really know since I was in the hospital with a bowel obstruction when it happened.  I was on so many drugs that I don't recalling asking them to take a pregnancy test, and while they drew blood every day, no one ever mentioned anything to me.  Perhaps they didn't want to add to my existing pain?  Or perhaps I wasn't pregnant after all.  My miscarriage and the loss of Preston, I feel have been two terribly different experiences for me.  Having a miscarriage was devastating, don't get me wrong.  It took time to get in a better place, but I think finding out a couple months later that I was as ill as I was, softened the blow.  I would have been 5 months pregnant when I had my first obstruction.  And then close to giving birth when I had my second one.  I was not a healthy person during the 4 months interval between both obstructions.  My GI always says, healthy mom = healthy baby.  I don't think our little peanut would have been healthy and I would have felt terribly guilty if that was the case.  So, once I had these reasons, it made it easier for me to heal.  I still wonder what could have been, but sadly, I don't think of this baby as much as I think about Preston.  I hope that doesn't make me a bad mama.  I would have loved this baby as much as I loved Preston.  With Preston, I fear we will never have a reason, which will cause us to always try to find a reason.  That itself, will most likely slow down the already slow process of healing after losing our son.

Preston's been gone for almost 5 months now.  It feels like an eternity.  It feels like yesterday.  Time stopped that fateful day and I wonder if it will ever start again.  I do feel like I am healing.  This blog has had a lot to do with it.  But as all my other wounds, it is a slow process.  I thank everyone who continues to have the patience to ride along with me every day.  It truly makes a difference, and I want you to know that.