Thursday, June 30, 2011

Blessed Beyond Measure

Getting up this morning I didn't particularly feel as if today was going to be a good day.  It's been a struggle for the past month to stay positive as I feel like I've got attacks coming from all sides.  Peace has been hard for me to find and the places that I usually ran to felt so far away.  I've felt secluded and unable to share what's going on with me because I don't want to remind people that I'm the "sick" one (as I heard myself being called by someone this month) or to become a topic of conversation in one of the little gossip circles around me that I want absolutely nothing to do with (I'd rather not know what's being said behind my back as is).  To put it simply, I'm drained.  I'd taken a few extra days off last week to clear my head but my plans fell through and I ended up stuck exactly where I was trying to get away from. By Sunday night I thought I was going to lose it... mentally or physically, whatever "flew off the handle" first.  All day Monday, I started planning my escape even if for no other reason that to bring myself sanity. 

Then it hit me... that first sense of peace. 

It wasn't the heavens opening up and it may sound silly to someone else but it was my first little bit of the healing that I so desperately needed.  I was standing in the kitchen after just getting home from waiting in my car for over two hours for my husband to get out of a meeting that should have been over two hours prior (while my groceries were sitting in the backseat).  The meeting didn't go very well (something that I'd been praying for different results for a long time) so needless to say it wasn't a fun car ride home.  Anyway, like I said, I was standing in the kitchen trying to get dinner done as quickly as possible just as I do every night in between the short few hours after I get home from work and my husband goes to bed.  Nothing out of the ordinary, the same job I do every night because according to someone, like it or not, it's my job.  Then the peace... my husband walks into the kitchen and says, "thanks for coming to get me today and for making dinner," then leans down and kisses me.  It wasn't much but it was exactly what I needed to hear at that moment.  Those simple words stopped me in my tracks and brought tears to my eyes.  I felt loved... the greatest of all gifts.

Today came the second blessing.  Like I said in the beginning.  I woke up this morning a little sassy.  There were still a lot of things weighing on me.  Yesterday was NOT a good day and I'd driven myself to pure silliness last night just to make it through.  Not things that I can go into because they are not my stories to share but all hurt me the same as if they were my own.  With that being said, I had a doctor's appointment this afternoon and due to my insanity lately, I hadn't gotten my blood drawn.  There was the issue of time but also that fact that I had two doctors requiring the same tests and then two different ones but from different clinics so I didn't know how I was going to manage to accomplish this without having to pay for one set out of pocket because of the duplicate test so I decided to just wait until I could figure it out.  Normally not such a big deal but today's appointment was with my hematologist... the blood doctor ;)  But Dr. L is a blessing on her own.  I wish she could be my doctor for everything.  She walks in the room today and asks me how I'm doing and I blurt out, "I didn't get my blood drawn."  She laughs and says, "Is that your big confession?"  Did I mention that I love her?!?!  Any other doctor in her profession would say, well what's the point of this appointment if I don't have blood to look at... but not Dr L.  She sits down and says, "now how are you really doing?"  This woman does not ask just to be nice, she expects me to tell her.  So I do.  All of the things that I have been holding back from everyone else in my life because she knows and understands what this horrible disease is doing to me on the inside and how all of the things on the outside truly make it worse.  She passes no judgement (she also counsels cancer patients after work and has told me that I'm welcome any time) because she knows that I am not looking for sympathy or to have my feelings held against me.  Then she tells me even though I'm not sure that the Humira is actually working that I look healthy for the first time in a long time and she's not worried that I'm going to collapse on her.  It means more than I can express and it gives me hope.  It's doctors like her that make living with a chronic illness bearable!!!

 Peace and hope... what more could one ask for :)  But wait, there's more!!!

Blessing #3 came this evening when I saw my husband walk through the door.  He was carrying 2 new sets of tools that he won today at work.  He was happy, I could tell, and that in itself is an unusual sight when work is involved.  As he sets down the tools he says, "I got a call from X today."  I immediately stop and give him my full attention knowing that this conversation could go only one of two ways... especially after the not so good meeting from Monday.  But as I look up, I see that my husband has a huge smile on his face and I know what he's going to say but I let him tell me anyway.  "Starting Monday I'm finally going to be a Journeyman,"  is all he says.  I'm still speechless, it's what I have been praying about for the last 2 years.  We don't know how it happened because this guy has been the #1 person stopping this from happening this entire time but it's finally happening.  I couldn't be more happy for him.  I give him double high-fives and a huge hug.  "So today's been a good day," I say to him.  "Today has been a great day," he replies.  That statement alone is almost another blessing in itself.

Peace, hope, and security.  What can I say, I'm blessed beyond measure!!!  In our darkest hour we learn that we are never forgotten, never forsaken, never alone. Take that grain of sand no matter how small and run with it, nurture it, watch it become beautiful again.

Well that's it for me tonight... it's injection time!!!

Wednesday, June 1, 2011

An Update Over Due

Can't believe it's almost been two months since my last post?!?!  What can I say, I'm a work in progress!!!  There's been so many times that I have sat down to update but most times I log on just to turn around and log back off because I'm not quite sure what to write.  It's not that I don't have a lot to say but I'm definitely one that likes to look towards the positive and to be honest... I'm just not feeling it.

Let's start from the beginning... I started Humira on April 14th. I do not want to go into the details (the main reason this post took so long) but let's just say those first 4 shots at the doctor's office were unnerving.  I thought that I was there for teaching and she would show me how for the first 6 shots (4 that day and 2, two weeks later) but after the first shot, it was all me. Ugh... I'm getting "butterflies" in my stomach just thinking about it again.  The injections hurt!!!  It's not just the shot but the medication itself hurts going into my body.  Not sure what I expected but it definitely wasn't that.  The nurse and I decided that maybe the hubby should do my injections for me going forward just so I wouldn't have to deal with psyching myself out and we could just get it over with.  Ever heard the saying, "paybacks are a..." well the hubby agrees 100% and has no problem giving me my shots.  The good part is though, is that he has just enough understanding for what I am going through with enough "no nonsense" to get business done.

We made it through the start up doses before we hit the first snag... I got a cold.  A cold has never been a big deal for me before but when you no longer have an immune system, everyone starts to get a little concerned. I got it right after my last start up dose and it had only gotten worse by the time it was time for my first maintenance dose (2 weeks later).  The Dr immediately said no to my next dose and that if it wasn't better in the next few days then they wanted to look at my white cell count. A few days later came and it was traveling into my chest. They sent me in to check for pneumonia and thank God, the x-rays came back negative.  It took another week before my Dr felt it was safe to try again.  An entire week later than I should have waited.  The big thing with Humira is that you need to keep a certain amount of it in your system at all times which is why you have to give yourself an injection every two weeks.  The Dr gives you 12 weeks to see if it's working well enough before they pull you off and I'd hate to go through all of this to have it not work because I can't take it like I'm supposed to.  Anyway, back on my doses again.  I don't really notice any difference but I can say that the 3 weeks that I was off of it, I was extremely tired again.  So even though I don't really feel it, it must be doing something :)

Other than that, I turned 30 on the 9th of May.  Age is definitely just a number to me but at the same time I really don't feel like I've been on this earth for 30 years.  How does it go by so fast?!?!  My hubby has now been apart of my life for half of it and we've been together 45% of it :)  How crazy is that!!!

Well I know there's more to catch up on but that's it for now, the time clock is calling my name :)

Friday, April 8, 2011

An Online Enemy of Sorts

I've been searching all night for blogs of others with Crohn's Disease in hopes of finding someone else's journey that I could relate to or see how this wonderful and lovely (major sarcasm there) disease affects others.  I have to say that they are not many.  That's a good and a bad thing depending on which way you care to look at it.  What ending up happening though was that I had a revelation that thoroughly freaked me out and is definitely not healthy for my state of being at the moment.

Everyone's journey with Crohn's Disease is different.  It unfortunately has the capability to jump all over your digestive tract which is why everyone does not respond the same to the disease or treatments.  I've never found anyone with likeness to my journey.

Here's the shortened (ha ha... that's a joke) version my last 14+ year journey with Crohn's: 

I was diagnosed at 15 with Ulcerative Colitis after being told for a month that it was just a really bad stomach flu (thank goodness for my strong willed amazing mother who knew better than that).  I was immediately put on Salfasalazine and after a while I started to feel better so I weaned myself off of it.  The spring of my Jr year in h.s.  I became extremely ill again, went back on the meds, and immediately made an appointment to see a G.I. (which was booked until July).  By the 4th of July I was so sick that I could eat and couldn't take my meds because I threw EVERYTHING up, even water.  My amazing boyfriend (now husband) spent those last few days carrying me around because I was too weak to stand longer than a few moments.  On the day of my appointment, the G.I. took one look at me and said that she was admitting me into the hospital and we could talk after I was checked in.  That first stay at Doernbecher's Children's Hospital was 31 days.  During which time I was put on TPN (a feeding tube that bypasses the stomach) so that my colon could rest but it didn't do what they'd hoped and 3 weeks into my journey they let me know that I needed to have my colon removed. My family prayed and talked but the doctors said that at this point there wasn't any other choice. They showed me the horrible pictures of what my poor colon looked like but it wasn't until after I came out of surgery that they told me that if I hadn't gone with the surgery when I did or even at all, that my colon would have burst and all that poison in there would have killed me.  This also was the first I'd heard of Crohn's (the un-curable sibling to U.C.) but they wouldn't know one way or the other til they looked at it during surgery.  Best case scenario they should be able to create a j-pouch on the inside with my small intestines so I wouldn't have to have a permanent colostomy on the outside of my body at 17.  The whole process would take 3 surgeries to complete during the course of next 6 months (wasn't quite how I thought of spending my senior year in h.s.).  Surgery went well and they were 100% sure they were dealing with U.C. and not Crohn's which meaned that life would go on as normal after I healed because without a colon you can't have U.C.  I made it through my senior year very exhausted, not at school a whole lot, and a little cautious (hiding a temporary ileostomy can do that to a teenage girl) but with high hopes for the future.

I started college that next fall really excited but still feeling really exhausted.  I kept getting what they called pouchitis - an infection to the little reservoir they'd created for me.  I also never returned the health they expected me to.  During my sophomore year I lost my health insurance and it all started down hill from there.  That summer I exhausted myself that my anemia became so bad that my legs became covered in welts that looked like someone had hit me repeatedly with a baseball bat.  From there I got my first fistula.  I had no idea what was going on or what it was and no doctor to talk to.  I went to the emergency room and came home in tears because the doctor had no idea what I was talking about tried to tell me it was an STD (I was a virgin and not sexually active).  It would heal and go away and then return.  I was hospitalized many times over the course of my Jr and senior year in college and it even caused it so that I only completely my degree as far as I could to graduate... completely missing out on completing my program and student teaching.

It wasn't until after college that my mom could get me on her health insurance for a short while.  I went back to the doctor and they kept saying how they must have missed some of the U.C.  It wasn't until I had a major fistula that sent me to the emergency room that we finally started talking about Crohn's.  The light bulb:  U.C. doesn't have fistulas but Crohn's does... and Crohn's is not curable.  I then found out the next big blow.  In Crohn's you never want to do a complete removal of an organ because the disease will just attack another digestive organ, you are just supposed to do re-sectioning.  But I'll never know if the right choice was made to just take it all out... I mean I saw the pictures and they were really bad... but my doctor's not around to ask, he's now called Dr. Death and sitting in jail after being charged with errors that caused the deaths of many of his patients... but who's to say whether it was a mistake or it was just the way that my path with this disease was taking.  I lost my insurance again due to age but got set up with a Dr during one fistula surgery that was willing to help out however he could.  He got me set up with Pentasa and infusions of Remicade but both were too expensive without insurance that I was told I couldn't continue without paying my bill.  I really wasn't on it long enough to know if it worked but once off you can't go back because you become allergic.

This roller coaster has been they craziest thing.  It's only gotten worse as time has gone on.  My worst fistula was 2 years ago and came 3 months before we got married.  This one decided to travel outside of my digestive tract into another organ and I had to take an entire month off of work to re-cooperate... re-cooperate, not heal.  My poor husband, being married to me must be a nightmare.  Neither one of us had any clue that the road was about to get so bumpy... nothing in the past 11 years of our relationship had prepared us for the newness Crohn's had in store for our future.  Each fistula has gotten worse... to the point that I'm starting Humira next week (which I've done everything possible to avoid).

Thinking about my journey and everyone else's tonight is what freaked me out so much.  Tonight I saw a picture of a woman who had a fistula that traveled out to her tummy by attacking a scar from a previous surgery.  Sounds disgusting and scary but it's not what scared me.  What scared me is:

1. I can control most of this disease but I can't control the fistulas. From what I've read, anyone who's ever "cured" their Crohn's has never had a fistula.
2. I can't have a resection to remove part of the disease like everyone else because none of my fistulas begin in any place that can be removed without removing the little hope that I have for not having a permanent colostomy for the rest of my life.  As my Dr says, we loose that and we loose all other options.
3.  If these injections don't work, outside of some miraculous healing, I am out of options
4.  I'm scared -- I can't stand admitting it but I am.  I've been strong for 14+ years.  I'm always the optimist.  I'm not worried about getting through this... I have a blessed life and will no matter what.  But how am I going to feel if it doesn't work and this disease will have stomped on every path I thought I was supposed to travel down.  What will happen to the things that I cherish most if this same path keeps it's unending circular shape and nothing changes?!?!

Sorry to unload this but I can't wake up the hubby to confess my fears because we both have to be at work in a couple hours and he needs his sleep. 

Just goes to show you that all the information on the Internet isn't good for you ;)

Thursday, April 7, 2011

Quick Update

It's been almost exactly two weeks to the hour since I got out of surgery and I have to say that I've felt better.  Overall, I have been doing much better but this recovery is a lot sorer than some of the other times.  Just when I think that I'm well on the road of recovery my body will just start aching (for lack of a better word) all over again. But I'd definitely rather deal with this than how I felt pre-surgery any day :)

The real update though is that I heard from the company who was setting up getting me on the Humira and... the order is being processed and will be here on Tuesday.  Completely freaking out here!!!  I called the Dr's office and we have my teaching and first injection set up for Thursday.  Ugh, one week from today.  I am still a mix of emotions but I know that God's not going to put me in any situation that I can't handle either way it goes.  Thank you God for that!!!  So we shall see.  I welcome all of your thoughts and prayers these next few weeks.  I'm going to need them!!!

I know this is a fairly unknown disease and topic for some so if you have any questions... just ask!!!  Education is the key, not to mention that talking about it helps me sort out what I know and feel :)

Monday, April 4, 2011

I'm Going Left... No, I Mean Right

So, I failed....

Not really, but my number one and two priorities didn't happen.  Apparently someone had other plans for me.  I managed to barely make it through my husband's 30th birthday weekend extravaganza with some major help from a dear friend and one of my sister-in-laws (thanks ladies).  It was only by the grace of God that I physically made it through though.  That weekend plus two days of struggling through work and my body put it's foot down on my priorities.  One crying phone call to my boss about how sorry I was that I couldn't even stand up long enough to get ready for work and I knew that this wasn't going to get any better.  I got off of the phone with her and made the call to my Dr's office.  The first response was that she (my doctor) was booked all the way out til June but since I was in bad shape they were going to find her to see what she could do.  A matter of minutes later they were calling me back to say that my surgeon saw this and wanted to see me the next day after he got out of surgery... aww crap was all I could say, however as far I knew at this point he could also take one look at me and say that it looks like it hurts but nothing's infected yet and I was going to have to wait it out.

Talk about one of the longest and painfullest nights of my life.

The next afternoon I had the hubby drive me to OHSU.  Definitely shouldn't have been driving myself for sure and it also was a precaution so that I wouldn't be alone just in case the worse case scenario happened (surgery).  I don't think that I've ever waited so long to see a doctor... but I knew exactly why it was taking so long.  See, my surgeon has known me long enough to know that if I actually drag my butt into their office then there is something really wrong, so he was putting other patients in front of me so that he would be able to take me right into surgery if needed.  The problem was that the longer I waited though the more worried I got that there wasn't going to be anything that he could do and I was going to leave in the same amount of pain that I arrived in but with a more than irritated hubby who'd been sitting in the waiting room for well over an hour at this point.  His medical student kept on checking on me and asking me more questions which I have to say was making me a little crazy.  Finally my surgeon walked into the door.  He asked me two questions and immediately after I answered said, "Well you know I'm going to have to take a look now." "I kind of figured that," was all I could say.  A two second peek and response of, "Ohhh-kayyy" was all I got.  Darn it, I knew what that meant.  We went through the same routine:  well, it's definitely an abscess... dang it... well, I can try and drain it here... um okay, but you know how well I do with that...  well, you'll feel some instant relief if it works...  okay, but you'd better get my husband so I can break his hand.  Hubby comes in the room thinking who knows what and my Dr sits him down and shows him how to hold his hand and fingers so I don't break them while he makes the incision.  A little numbing and it's time to do this.  One cut and I scream and I do mean scream... whole body, head to toe, no way of controlling it scream.  I've only screamed twice in my life before this and the first time was the first and last time he'd tried to do this same thing 2.5 years prior and the second was in the car after wards on the ride up to the hospital because by trying to drain it only made it worse.  Instantly I started to sob... the tears flowed for so many reasons.  I cried for feeling like a baby because I felt like I should be able to take the pain.  I cried because I screamed.  I cried because of the pain.  I cried because I knew that because he couldn't get it drained that he'd have to do surgery. 

I get myself back in check because this is my reality... this is my life.

We sign all the consent forms and he tells me that he wants me to stay overnight this time so we need to get headed up to the hospital to get checked into my room before surgery.  It's getting late and hubby has to be up for work at 4am so I call my parents to come so he can go home but of course he won't go until he's sure that it all goes okay.  Surgery gets scheduled for 11pm and I am still in the process of getting checked into my room when all of a sudden they're at the door to take me to surgery 2 1/2 hours early... guess that's one way to not have time to get nervous.  A few questions from the doctors and a few kisses from my wonderful husband and it was off to sleep for me. 

The surgery went fine but they found a lot more infection and damage than anticipated which was why trying to drain it in the clinic didn't work.  I woke up with another seton in, which was exactly what I'd asked them not to do if at all possible but as the Dr said, "we didn't have a choice, it was that bad." 

It's been a little over a week since surgery and for the most part I'm doing better but it's still very sore and at times painful.  According to my actual G.I. doctor though I'm doing better than she expected.  She told me today that she's surprised I can even sit upright comfortably.  Thank God for my high pain tolerance is all I can say to that!!!  This surgery though has brought me to the bottom of the barrel though in regards to what choices I have left without allowing them to take more of my organs from me.  I have gotten all upper digestive attacks under control but everything lower is still under attack with no apparent signs of ceasing.  The morning after my surgery my G.I. doctor told me that she was going to start pushing me on the Humira issue and that I needed to give it a try.  I've been praying and asking for prayer all week.  It's in the process of being approved through insurance and should be here next week.  Some parts of me are totally at peace with this and others are completely freaking out. I'm asking for more prayers!!!  The usual saying that it doesn't hurt to try doesn't apply here and there is no guarantee that it will work.  The possible and probable side effects of this medication aren't something that I am taking lightly but at the same time, neither is my quality of life... and right now, I want it back!!!  Please join me in prayer and send me a message if you'd like some more specifics.  I am grateful for any support I can get!!!

Tuesday, March 15, 2011

The Cycle of Starting Over

It's back to square one... and let me tell you, it's the last place I want to be right now.  It isn't just that I don't want to be here right now but I don't have the TIME to be here right now!!!  I work full time where it's anything but M-F/9-5, take care of almost everything at home, try to be a good wife, all the while this weekend I'm throwing TWO different birthday parties for my husband's 30th.  So Crohn's didn't have a spot on my TO DO list.

Not that I didn't see it coming.

I get at least one fairly big flare up at least once a month but thank God that they usually only last for a few days. But this one has been building probably since I took that first bite of something that I probably should NOT have eaten months ago.  It's "funny" how something so small spirals into something we can't control.  Man, I feel like I'm starting to talk about sin here ;)  I've had all the warning signs that something big was coming but I'm not one who wants to believe that I can't control this disease.  Believe me, for the most part there is nothing that I can actually do to prevent it.  In all of their research they aren't sure yet how to stop this disease or even control it.  There are things that help but Crohn's really does have a mind of it's own.  Whatever it is that causes it is what is sending the lovely un-necessary poisons through my body to attack and kill the organs of my digestive track. But on Sunday, the attack hit in high speed...  immediately I got really hot, my head started pounding, I felt clammy, and very dizzy as the pain of the disease creating yet another tunnel through my body took place. When I say tunnel, I am being literal.  Due to my severity of Crohn's, I get what's called "fistulas."  Fistulas are the effect of the poison reeking havoc on my body so that it creates just that, tunnels through my organs and tissue... some times all the way through to my skin.  It's the one part of Crohn's that no matter what I do, I can't seem to stop.  The pain is horrible and standing up makes it worse because gravity pulls down on these tender areas.  The light headed-ness is always my warning sign that it's only going to get worse.  By the grace of God I made it home that night and somehow mobile the next day but when I got home on Monday my body decided that it was time to shut down... no if, ands, or buts. Today I was forced into a day of rest due to the fact that power to stand longer than a few minutes wasn't something that I could do without tears of frustration streaming down my face.  I feel lost and out of control... something that I CANNOT stand!!! 

I don't care what I have to do, staying OUT and AWAY from the hospital and another surgery is #1 on my priority list.  Okay, well maybe #2 because my real priority is getting myself out of this mess.

I just want to cry!!! I want to put on my jammies, curl up in a ball next to my husband, make him listen to my worries, wipe my tears, and have him hold me until all of the emotions wear away and I fall asleep.  But honestly, what's the point?!?!  The other part of me took a shower today, got dressed, dried my hair for maybe the second time in MONTHS, put on some make up and a fake smile to either hide the fact that it's gotten this bad again to those around me and/or to deny to myself that it's anything other than just a normal day.  Why let my emotions get the best of me?!?!  It's not the first time I've had a major flare up and unfortunately it probably won't be the last.  One of the hardest parts of all this is the emotional damage that it causes.  It doesn't get any easier each time and it actually seems harder because it is even more frustrating each time... not to mention the toll it takes on everything around me: my marriage, work, those I care about, my commitments, even down to my ability to get out of bed... the list goes ON and ON!!! 

So anyway, I just had to get it out before I start to bawl or blow up... I'm teetering back and forth!!!  Tomorrow begins a liquid diet for me to cleanse my poor body for hopefully the next 3 days... then we'll see.  Send a prayer out for me as I start this cycle again.  I am still trying to avoid having to give myself shots every two weeks for the rest of my life (which is my last option for treating this thing) of a drug that may or may not even work.  There's got to be a better way... a better quality of life!!!  I'll update as the days go on.

Friday, February 25, 2011

Wham Bam Thank You Ma'am

Monday was my 2 month follow up for my blood and iron levels... one of the lovely side affects that Crohn's has on my body.  I did my blood work last week and Monday I got to hear the results, visit my Dr. and be hooked up for another iron infusion (in reverse order though).  Then after the fun was done, it was off to 8 hours of work.  It was just one of those days where I didn't have a choice or a say except for, "Here I am. I'm going with the flow.  Let's just get this over with." 

Life is what you make it right?!?!

So we started out the day early because I was determined to make sure that I was fully hydrated so that we could have an IV on the first poke (instead of the 4 to 6 that it usually takes).  We left the house with plenty of time, got there, and found out that my new insurance doesn't need pre-approval for my infusion :)   Then it was the weigh in... this is a standing game between the hubby and myself to guess what the magic scale will say.  Keeping weight on is such a battle for me.  Usually we are both fairly right on though.  So hubby guesses his number and I said, "no, I've put on weight, I can tell."  He laughs because he doesn't believe me so I step on the scale and... I'm right and he's off by 10lbs!!!  I've put on 11lbs in the last two months (INSERT HAPPY DANCE HERE)!!!  That would be a total of 15lbs I've put on since my last weight scare  (let's see how long it lasts).  I'm feeling pretty good at this point and doing my best to not let my nerves get to me.  I am actually allergic to my iron infusions so we never know how I'm going to react each time.  The hubby makes his usual jokes about my upcoming date with the needle and how many times it will take and I give him back my best glare and the threat that if it takes more than 3 times I'm going to have the nurse put it in him instead between his toes (a painful past Army experience for him).  My date arrives and SCORE!!!  We're good on the first try (it immediately stops working but between me and the nurses, we're pros at twisting my poor veins around to get them to behave for the time it takes to get business done).  Then here come the pre-meds... the wonderful "drugs" that take a half hour to administer for my 1 hour infusion... but whatever it takes to get iron into a severely anemic person who is severely allergic to iron.  Outside of actually being allergic, the pre-meds are the worst part.  I dislike taking any sort of medication... even taking Tylenol when I need it is a struggle because I don't like anything in my body.  The first pre-med knocks me out and the second hypes me up.  It's a weird combo that I'll never understand and don't even try.  The rest of the hour is pretty much a haze except for the occasional nurse asking me my name, date of birth, and telling me that she's going to take my blood pressure.  I've got my warm blanket, my husband by my side, and not one reaction to the infusion that seems out of place... darn, this is a good day :)  When it was all over my Dr stops in to have our appointment in the infusion center since our scheduled time was long past and she knows how hazy I get afterwards... she really is the best.  She sits in the chair next to me and just talks to me.  It's hilarious that I can totally see the red flags go off in her head when she hears me talk about something she doesn't like... like me being stressed (another big no-no for a person with Crohn's)... but I tell her no worries, I can handle it (because I really eventually do).  We talk about my latest numbers and how we caught it again right before the spiral down so hopefully this infusion helps and we'll stick with infusions every 2 months but I now get to move my next Dr appointment to 4 months out because of my weight gain and non-crashing numbers... woohoo, much better than my 2 month check ups and the monthly ones before it ;)  Got my appointment reminder and a warning to take it easy at work and we're off.

 The work day turned from an 8 hr to a 10.5 but all in all, not too bad of a day (all things considered). The fun part is keeping it all in check until next time!!!

Saturday, February 19, 2011

The Choices We Choose To Put In

So standing in line at a store today I had a reoccurring thought that happens every so often when I actually pay attention to what the person in front of me has on the conveyor belt.  This particular guy has a stack of frozen pizzas and other frozen items, chips, snacks, and a HUGE container of gumballs (like the kind you put in a gumball machine)... in other words, all items that I would consider junk food.  I will admit that my first thought was that this "poor guy" must be single but that thought quickly faded into the reoccurring one...

How is it that he/she can put that stuff into his/her body?!?!

It's actually a thought I think often for many reasons I guess and it's not just the Crohn's talking because I know a few people with this disease who will probably never change how they eat.  In defense of the guy who has no idea that he provoked such a thought, it probably tastes good to him and hasn't ever caused him problems before and probably never will, so why not.  I definitely did not eat horribly before my diagnosis, nor did I change much about my eating habits for the first 12+ years afterwards but the question still plaques me about what if I had changed my diet sooner.

The average person consumes what he/she wants and worries more about caloric intake or convenience without the slightest thought to what he/she is actually putting into his/her body.  My old philosophy was all about portion control and if it comes with a label that says:  diet, low-fat, or non-fat to turn the other direction and run.  It had always worked for me but it wasn't enough.  Apparently there was another plan for me... Crohn's.

I was diagnosed with this lovely digestive disease since the age of 15 and kept my same philosophy all of these years not realizing that I had more control of my disease than I'd thought.  It wasn't until last August when I was literally crouched over in excruciating pain and on the verge of being in a very embarrassing situation at work that I realized that if I didn't find a way to take control of my disease that I'd have to quit my job.  I had already given up on a position about 4 years prior due to this disease and didn't emotionally think that I could do it again.  About a week or so prior to this day I had actually just finished reading a book about a man who has the same awful disease who had "cured" himself by changing the way that ate completely.  Up until this particular incident though, I was still struggling with the lifestyle change for a few reasons.  The first being that it was such a huge commitment to actually be aware of every little thing that went into my body and to not allow anything processed and the second was that I wasn't going to do this without my husband because committing to this was saying that I wasn't going to allow anything other that "natural" foods into my home, and the third being, what if it didn't work. 

That moment right there I made a commitment, one that everyday I still struggle with.  It's amazing how one little bite of a "bad" food can send me almost back to square one and the road back is rough... such is life at the present moment.  In that moment at the realization of the severity of my situation I called my husband crying to pick me up and told him that I was going to do this.  On the way home he stopped to pick me up some organic broth and I stayed on that for three days to clean the toxins out of my system since people with digestive diseases cannot do cleanses.  To most people, fasting is hard, for me, this was almost unbearable. Being in an upright position required that I become friends with the nearest garbage can.  After the second full day though, the stomach pains completely stopped and I didn't feel things that I thought I'd have to live the rest of my life with.  It was a baby step, but I had some control.  I had wanted to stay fasting longer but the severity of my disease wouldn't allow it... I needed solid food.  That first trip to Whole Foods was hilarious.  I had forgotten my list of good foods to start back with at home, the bookstore was sold out of a copy for me to temporarily use, I was hungry, and scared of everything.  Had I been there alone I think I would have just found a corner to cry in.  My husband and I selected a few meals to try and I realized something... nothing was going to be different; I was still going to be able to cook and eat the same things; I'm not leaving anything behind; it's just that I'm not putting any of the bad stuff in anymore.  I didn't feel another pain for 3 months!!!  For the most I don't feel the pain anymore unless like I said, I choose to eat something on the shadier side of things... holidays and going out is hard!!!  There's something to be said about being the hostess :)  It's been six months this next week since I started.  My husband is not as committed as me anymore but I'm strong enough to make my own choices.  Things of convenience just don't matter as much and one of my biggest accomplishments is that I haven't had a single soda in all of these 6 months and my migraines have almost completely gone away without the caffeine to help alleviate the pain.  It has been great.  One of the areas of Crohn's that I can effect... under control :)

Back to that guy that provoked my thought this evening for a moment.  It not that I want to try and change his or anyone else's mind about what he/she eats, it's not my place, but here's a thought to ponder... I have this disease, I can't take it back or make it go away but you don't, and you have total control over how you feel.  If making diet changes and avoiding putting in chemicals into my body has made such a difference in my disease ridden body, what can it do for you?!?!  It's a choice!!!

Sunday, January 23, 2011

Speaking with a purpose... or so I'd like to think (the introduction)

The new year has started and blogging has been on my mind a lot already.  It's not that I think about people actually reading my thoughts but writing has always been a way for me to SEE my own thoughts... a way for me to look at it from an other's perspective in a way.  Writing makes for a more thorough thought process as to what I'm attempting to say and/or a way to look at a situation and say, "Really, maybe you were overreacting just a little?!?!"

With that being said, they are just that, my thoughts, and those of no one else.  They are not up for judgement nor meant as judgement... however, a healthy discussion about one's thoughts never hurt anyone.

Expect me to be brutally honest; I always am.  My husband often says, " Can't you lie just a little."... To which my answer is always an absolute, "NO!!!"  My goal is to be thoughtful and tactful, but more often than not, it just needs to be said how it is.  Being cruel isn't who I am nor what I'm actually even talking about here...  because when you live with a life-long, never going away (unless God decides to heal me), nasty, and sometimes debilitating disease such as Crohn's... honesty is the only policy.

Me and My Purpose (as I know it thus far):

*  I am just 3 1/2 months away from the big 3-0 (and could care less)
*  I have been married for almost 2 years but we've been together for almost 13
*  My family is my everything and they give me so much joy.  I do everything I possibly can for and with them.
*  I graduated from college with a degree in Elementary Education and I use my degree everyday but have never taught in a classroom of my own.
*  I was diagnosed with Ulcerative Colitis at 15 and Crohn's at 20 but they say it's almost impossible that I had one and now have the other but I've never had any symptoms that belonged to the other while under  each diagnosis.
*  Crohn's is a big part of who I've become but doesn't define me nor own me (even when it's at it's worse).
*  I want children but haven't quite decided whether I'm willing to medicate myself for the rest of my life just  to have them on my own.
*  I'm still trying to find my place in life by giving more of myself to God so he can show me my real path.
*  Music stirs my heart.  It's a window to one's soul.  Is it any wonder I'm married to a musician?!?!
*  Caring for others is my passion... I always put others before myself and sometimes I have to be reminded that we're all ultimately responsible for our own selves and decisions.
*  I'm a lover and a fighter but not at the cost of someone else's happiness.

And lastly for the moment...  I'm stronger today than yesterday and that alone is enough to get me through!!!

I hope you enjoy the read and I would love your feedback and/or suggestions...