1 month follow up

March 23, 2019

I just go back last night from my 1 month follow up appointment at the NIH.  The appointment went great, but getting there is a bit of a different story.  So let me back up a bit and fill you in on the details.  Matt and I flew home on Tuesday March 5.  And boy were we ready to be home.  Our flight was in the morning so we had be at the airport bright and early.  We left the hospital on the airport shuttle at 7 am when it was freezing outside.  If I remember correctly the temperature was in the teens as we were loading up in the shuttle.  We were both a bit anxious to have the day be over.  We both knew it was going to be a long day of fairly uncomfortable travel.  Shuttle rides are never pleasant for me as I tend to have some motion sickness.  So I sniffed peppermint oil all the way to the airport.  And it felt so good to get out into the crisp air once we arrived.  I had packed some snacks and protein drinks to take on the plane with me.  I knew security would be an issue with the liquids so I got a letter from my Dr on NIH letter head explaining my situation.  TSA was very understanding and let me keep it all for the day of travel ahead.  I’m so glad my hubby was there with me to navigate all of that though since there was lots of walking and then standing around waiting.  When we arrived in Phoenix I can’t even begin to describe the joy I felt when our kiddos were there to pick us up.  It was amazing to see their little faces and feel their big hugs.  I sat in the back seat between the two of them to hold their little hands and chat with them on the 30 minute drive home.  They were super excited to see us as well.  It was almost like they couldn’t believe we actually came home.  Our daughter, the oldest, kept saying “you are never allowed to leave for 2 weeks again.  That was too long!”  I could appreciate that statement.  Haha.  

The next week was a bit of an adjustment as I now had 2 very active excited children with me.  Thankfully I had so much help from my husband and mother in law (Grandma).  I didn’t have to worry about getting my oldest to school or picking her up for that matter.  Grandma was able to get her to school everyday, play with our youngest, and then pick up her up when school was out for the day.  And then a good friend offered to bring Emma home from school every day for a couple of weeks after this first week.  It is so humbling to let so many people in our lives help us so much.  We are so appreciative.  Not only did I not  have to worry about getting Emma to school, I didn’t have to worry about making food for anybody either.  Several people dropped food off for us for a few weeks and my husband was amazing at just figuring meals out.  My days were consumed with eating, drinking, sleeping, and then repeating many times.  So it was a godsend I was able to focus my energy on what my body needed.  I was feeling good and getting a bit bored of the same food options every day so I decided to venture out on March 14.  That morning I decided to try one of our homemade breakfast burritos.  It’s got eggs, spinach, onion, and mushrooms (all cooked of course).  And it went well.  It took me a while to eat it but I was able to eat most of it and felt good the rest of the day.  So the following day, March 15, I decided to have another one.  Again, went down pretty well and felt good the rest of the day.  

That evening I had plans to go to a St Patty’s day walk/run even with a friend.  Originally we were going to run the 8K on March 16 just before heading to Maryland for my original surgery date of March 21.  But since the plans changed I wanted to try to walk the 1K the evening prior to the run (March 15).  So we met up and walked the fun 1K kilt run/walk.  We chatted and got caught up on each other’s lives.  It was fun.  Then we decided to get a bite to eat for dinner.  We chose pizza (since pizza had been going well for me so far).  We ordered the margherita pizza.  I knew it would have tomatoes on it, but I thought ‘they’re cooked, they should be fine just like the pizza sauce’.  At the time I didn’t think about the skin or the seeds of the tomato.  So finished dinner, went home, and went to bed feeling just fine.  Well, I woke up in the middle of the night with pretty bad abdominal cramping.  In my on and off wakefulness from the pain I thought to myself “it has to be from the tomatoes”.  Woke up nauseated the next two mornings.  Just not feeling right.  Went about my day not eating or drinking as much as I had been.  This was the first time I actually vomited.  I was nauseated and my appetite was almost nothing. I forced myself to eat at least a little throughout the day. Monday I was feeling much less sick to my stomach.  Oh wait, I don’t have a stomach. Haha. *insert knee slap*.  Okay much less sick to my tummy. But no food looked or sounded good. I struggled with this and not having an appetite for the next several days and dry heaving daily.  Which then spiraled into a mental battle quick. This was the week of my 1 month appt. I was scheduled to leave Phx Thursday to fly to Maryland and have my appointments on Friday. I was very nervous about this trip as I planned on traveling alone and the way I had been feeling made me weak. I felt very dehydrated and drained of any energy.  I spoke with the NIH dietician, Rachael, on Monday and just talking to her about the foods I had been eating was making me so sick that I had to put her on hold to dry heave into the kitchen sink. This was the worst I had felt since surgery.  I was definitely not expecting to feel this bad especially since I had been feeling so good.  My energy level was so low I laid on the couch for days.  All of these physical hurdles we causing lots of mental hurdles as well. I really started to feel down about myself.  I was only 3-4 week post op and finally realized, with the help of Rachael,  I needed to be kind to myself and give myself and break. She told me to write down all the positives that are happening. Like being able to tolerate water with fruit in it or eating pizza on the daily.  So I made a mental note of all the positives happening right then and there. Every time I started to feel down about my progress I would remind myself of the positives and it would help me tremendously. It’s amazing how fast your mood can improve and stabilize just from practicing a little gratitude daily.

So now to present day, Saturday, March 23, 2018. I am tired. I was literally in D.C. for less than 24 hours.  Arrived in Maryland at 8pm Thursday night and flew out of D.C. at 5:30pm last night. Which put me home at 7:30 last night.  

But the trip was really good. Both flights went relatively well as I forced myself to eat even when I didn’t want to every 2 hours because I knew this was going to be what gave me energy.  First thing yesterday morning I had an appointment for labs and then a DEXA scan because they couldn’t get me on the schedule before surgery since it had been moved up a month kind of last minute.  I was so tired and just not feeling super great that I started crying when I needed to lay down for the scan. I hadn’t laid flat since surgery (because of my now risk of severe bile reflux) and was so nervous to do so for even 15 mins that I started crying in front of the tech. And then she started crying!!  She has a 4 month old baby therefore still pretty post-partum with emotions and all. I felt so bad. Haha. We had a good laugh about it. Then I laid flat for a whole 15 minutes.  And it felt amazing with no reflux (at lease nothing noticeable) and I was so excited to be able to do this from time to time. Haha. 

Next came my clinic appointment with the surgical team.  Rachael (dietician) and I had a very lengthy talk about how to get rid of he negative associations with food. My brain is just trying to protect me from getting ill again. She said every time I felt decent I should eat something even it if was something small. And every time I didn’t get ill from eating it should make those positive connections again. Anyway, taking with her, the NP and my surgeon really turned my mood into something more positive. I couldn’t believe I was sitting around feeling sorry for myself when I could have it so much worse.  I knew it was time to make an appointment with my counselor.  But I do recognize I can’t control the nausea so my NP prescribed me some medications. Fingers crossed they work!