Day to Day

     Good Evening readers!  I'm finding that when I want to write I don't.  So I apologize for inconsistency in my posts, but hope that you enjoy my posts when they do pop up.  The weather in upstate is finally warm, today we hit 70 and I loved every minute of it.  This weekend I finally got a massage appointment, and it helped my neck a little but I still don't have full range in turning my neck so I see a Chiropractor tomorrow afternoon.  I'll be so grateful when I can look to my sides without turning my whole body.
    Last week I went back to my gastro doctor because I have been having issues while being on Remicade.  He had placed me on Pentasa (3 weeks ago) to work with the Remicade, but I have been seeing him every 2 weeks to see if I get any better or not.  Well when I went 2 weeks ago I felt awful, and he ordered all these tests to be ran to see how my body was coping with the Remicade.  When I went back on Friday I felt great so he canceled 2 of my tests.  But I go for an infusion this Thursday, and since having surgery I haven't found a solid non-flare-up-time (made up word).  I receive my infusion and am great until about the 10th day after infusion, but then I get so sick with a flare-up for 7 days.  It's hell and I have been missing a solid week worth of work during this time because my flare-up is so bad; I end up with fevers, mouth sores, diarrhea, and abdominal pain.  After day 6 going into day 7 of being sick I begin to feel better.  Then the flare-up begins to subside, and I spend about 5 days feeling BLAH, not really sick but not feeling well either. After that the flare-up subsides, and I feel fine then I get another infusion and repeat cycle.  I have an infusion every 6 weeks due to the severity of my Crohn's, but since surgery I don't seem to be doing as well, but this infusion is the 1st one that I've been on Pentasa for so we will see how I fair.  I'm hoping no more weird flare-up in between so I can have some normalcy in my life.  Plus my BFF's wedding is day 9 after infusion, and I really need to be feeling great on that day.  I have responsibilities as a bridesmaid plus I don't want to disappoint her by being a party-pooper cause of my Crohn's, but I know she is understanding.
     So my doctor and I have an appointment 8 days after my infusion to monitor how I am doing, and I have to have blood drawn before the appointment so they can see how the remicade is reacting with my body.  If I am sick when I go to this appointment, he will schedule me for an intestinal CT scan, and possibly a specific blood test to see if I am developing an allergic reaction to Remicade.  I really hope this isn't the case because what I've seen my medical options are severely limited, and I've almost completely ruled out Humira since I don't want myself or family injecting me.  Anyone been on or still on Humira?  What have you experienced?  Am I being a big chicken?  Help a girl out, please.
     Another reason why my boyfriend is the one and how I knew.  Let's face it fellow Crohnies we do not always get the choice about our gas, and it's not always sunshine, rainbows, and a bed of tulips.  Dating means that you still don't do certain things in front of one another or at least you're not suppose to.  I can definitely admit I was the first one to fart in this relationship, but once I did we crossed a bridge and haven't looked back.  Although the first one I let rip was on accident, and really rancid....I was so embarrassed I wanted to cry.  We were leaving our mall and walking to the truck, and I was having a flare-up and let one slip while walking and thought OK it will air out before we get to the vehicle, and no biggie.  Boy was I wrong...it smelt the whole truck up he rolled down the windows, and I just apologized profusely.  He was so sweet...he said everyone does it, who cares, but are OK?  We can head home, we don't have to go to X (I don't remember where we were headed).  Don't get me wrong I was still terrified, but he did calm me down a little, and at least made me feel as though he didn't mind although I'm sure he did.  Heck, even I wanted to hang my head out the window like pooches do.  He's so understanding, and has been since day 1.  I love him dearly, and am so appreciative that he loves me for me (Crohn's and all)
     I know I still have to write about what happened at the hospital, and I am trying to work up the courage to.  It's one of those moments that was so personally scary that talking about it is difficult.  Please bear with me...I will tell you what happened, but I also want to keep everyone updated on what's going on with me currently.  Until next time, Take care.