Friday, October 3, 2014

UPs and DOWNs

Okay so more like an UP a bunch of DOWNs and another UP. Hopefully I won't have too many more downs in the near future because I'm seriously getting worn out!

So what's been going on in my life?? Well, here is the first UP...I'M MARRIED!!! Woot woot!!!!

I think I posted on a previous post that I was getting married in September, and now it's happened!! It was a great day (minus the hurricane force winds...) and it's been fun to be married! So far so good, despite the crazy first two weeks we have had as a married couple...

And that bring me to the DOWNs...apparently we are taking the "in sickness and in health" part of our vows literally...I had been struggling quite a bit with my gastroparesis symptoms leading up to the wedding. Thankfully the wedding and our 2 day honeymoon went great!!! No major issues and we were able to just enjoy a few days away together. Unfortunately, our first day home (last Wednesday) ended very badly. I had been on an almost completely liquid diet before the wedding because solid were causing me so much trouble. However, a friend of ours who made cupcakes for the wedding had made a special batch with "Kylene safe" ingredients. I didn't eat any at the wedding but she had sent them home with us and we had them in our refrigerator. I broke down Wednesday morning and decided to try one of them...I had HALF the cupcake and even that little bit did NOT sit well. I was so nauseas, in so much pain...I was curled up on the couch in the fetal position just praying for it to pass. I ended up calling my husband (of 3 days) and he made the decision to come home from his first day back at work and take me to the ER. Long story short, it was a good visit and we found out a few things that night that were very helpful:

1) I am SERIOUSLY sensitive to morphine. I always knew I was sensitive to medications, but even half of the adult dose made me close to unresponsive...later in the week doctors were amazed that a quarter of a normal adult dose was enough for me.

2) Zofran (which used to be my go-to medication for nausea) is not really working anymore, at least when things are really bad. Twice I had to ask for phenergan to just take the edge off my nausea.

3) I was seriously backed up! The most solid food I had eaten in over a week was the half a cupcake, but when they x-rayed my stomach, my entire bowels and colon were full. They sent me home with a prescription for magnesium citrate and said that should clean things out.

So that was the first visit on Wednesday of last week. The relief lasted about 2 days. By Friday afternoon, things started going downhill again...up until last week I had been pureeing vegetables to try to get nutrition while not being able to eat much solids...well that backfired and we ended up back in the ER Friday night. This time the doctors did a CT scan which showed a seriously distended stomach and upper intestines. They were concerned about a possible obstruction and we had a consult with the surgeon on call, and suggested admitting me for monitoring, but we decided that wasn't the best option for me at the time and came home. I got another prescription for magnesium citrate (my favorite...) which at least gave me something to do the next day =P

The weekend was okay despite taking the mag citrate on Saturday and being grounded =P Monday we had evening plans, but later in the afternoon I felt things coming back again...ER trip #3 on the week =\ At this point I had all the nausea meds I needed (including phenergan) but I was so nauseas I wasn't able to take anything by mouth. So back we went for more IV meds. I managed to make it to Thursday which brings me to the next UP.

I had an appointment with a GI specialist at UPMC in Pittsburgh on Thursday which I had really been anxious about. I've had some back experiences with doctors up until this point, and definitely get "white coat syndrome" when I meet a new doctor. I saw Dr. David Levinthal, and I HIGHLY r

ecommend him! He spent about an hour and a half with me and was very thorough. One good thing about the ER visits from earlier in the week (thank you hubby =P) was that we had current imaging to show him. Dr. Levinthal was able to look at the CT scan and show us how full and distended my stomach was and the distention in the upper part of my intestines. He was definitely very knowledgeable and really seemed to care (which is a really important piece of the puzzle for me). I didn't feel like just another patient but that he would actually be involved in my care and helping me manage things. Unfortunately there really isn't a quick fix with things like this...we are trying a couple new medications and I have a consult with a dietician who specializes in gastroparesis and food allergies. Hopefully this will help us start moving forward!

So yesterday's appointment was really good, but unfortunately today's work week appears to be ending on yet another DOWN. I help out with a Fellowship of Christian Athletes group at a local high school on Friday mornings, and right at the end of the meeting this morning I passed out. =\ Usually I can feel when I'm getting toward that - I get dizzy/lightheaded/shakey/etc. and can sit or lie down before I actually pass out. Today it came on suddenly. My vision started going black and the next thing I remember is waking up on the floor. Thankfully I was able to recover (at least enough to convince the EMTs and teachers) so I could drive home, but it really threw me off. Whenever I pass out I always end up kinda shakey and feeling off for the rest of the day, so that's how today has been.

Hopefully I'm on the road to another UP since I've definitely had my share of DOWNs in the past two weeks. But that being said, I am so thankful for these first few weeks being married and my amazing husband!! Shout out to my amazing husband who truly has jumped right into marriage and embraced the "in sickness and in health." Hopefully the next few weeks are WAY less eventful than these first two =)

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