Sunday, October 4, 2015


For several months I have been begging Chris to take me to Disneyland. Well pretty much since we got married, lol. I love it. I found a good deal on tickets and hotels through a blog that I read called Freebies2Deals. She puts together a discounted Disney trip every year. We hadn't been on a trip together since our Honeymoon to the Bahamas and our 4 year Anniversary is next week. So around the end of June or beginning of July we booked the trip. I have been counting down the days! It was almost spoiled by tube feeding and an ER visit just a few days before we left, but luckily I was feeling better and had a PICC line and TPN by the time we left. We left on Tuesday the 21 and got to our hotel late that night. We went to Disneyland/California Adventure Wednesday and Thursday and Universal Studios Friday, then flew home Saturday.

Here we are on the plane-so excited!

First thing when we got there, we went and got a Disability Access Pass. It basically was like another Fast Pass. There were a few places in the park where we could go and get a return time for a ride, so we didn't have to stand in line. My biggest fear was standing in line for an hour and getting to the front and not being able to get on because my bag was full and might burst open. Also with my rheumatoid arthritis and just being in the hospital, I didn't have enough energy to stand for very long. It worked out great and only waited in one regular line, that was only 10 minutes long. We didn't get to rides tons and tons of rides, but all the main ones that I wanted to. We even rode a couple rides that I had never been on in the other 3 times I'd been there. :) 

One of the things I really wanted to do was get a picture with Minnie, and get a picture with some princesses. I never had before, but that was the great thing about going with Chris. He let us do whatever I wanted. :) We only waited for about a half hour for Minnie and a half hour for the 3 Princesses. I was excited.

My Uncle Parley and Aunt Marilynn had a trip planned there with all their kids and grandkids too for a long time, unbeknownst to us until a few days before we left. It was fun running into them a few time. This is my cousin Katie and I. :)

Indiana Jones is probably my favorite ride after Space Mountain. When we rode I was super disappointed that the big ball didn't come out and we didn't get to drop down below it suddenly at the end of the ride. I asked the cast member if they took that part out of the ride, and he said that sometime when it gets backed up, they skip that part so they don't get cars running into each other. So we started to walk away, and he called back to us. When I turned around he asked if we wanted to go on it again, so of course I said yes and he let us right back on! And the ball came out that time. I loved it.

The first day we were at Disneyland I really felt like I was getting a UTI. I actually started feeling so I filled a standing antibiotic that I have and brought it with us. But it wasn't helping. We went back to our hotel around 7 pm to rest before the parade that night, but I was in so much pain we ended up taking a taxi to the closest Urgent Care. I felt so ridiculous, like kind of silly that this was happening. When did I become the girl that is always sick?! I was so upset over the inconvenience and extra cost of it all, but in the end I got a different antibiotic and we were able to continue our trip. At some point that first day I just accepted the fact that we would have to take it slow and not rush from ride to ride like I would have liked. Everything turned out fine.

The next day we decided to rent a wheelchair so I could save my energy, and because I was having a lot of pain from the UTI. It saved us. I would not have been able to walk everywhere we went. Made me feel like a big wimp, but whatever. Like I said, I accepted it. When we went to get a return time for a ride at Disneyland the lady recognized us from the day before. She said, "Oh no, don't tell me you wore yourself out yesterday and did too much!" I told her that I just wasn't feeling well and we had to go to urgent care the night before. She told us to hold on for a minute while she scanned something on our tickets. She told us she gave us something called a Re-Add. It was basically like a Fastpass but we didn't have to go get a return time first. It was awesome. She gave it to us for 2 rides at Disneyland and 2 at California Adventure. We went to the hotel around lunch to take a nap so I could last until the parade that night, and then went back to California Adventure, so we didn't even use the ones at Disneyland, but oh well. It was really nice of her. 

Snagged another pic with Minnie! I loved that it was Halloween time there!

Waiting for the parade in my wheelchair and new sweatshirt. :)

At California Adventure we only rode 4 rides. I felt pretty crummy. I took pain medicine because I was so miserable and that made me tired and nauseated. I could only eat a couple french fries and half a chicken strip at lunch, but I was very determined to still ride the big roller coaster and the Tower of Terror, so I did. And I survived. :) We also rode Soarin' Over California and the Little Mermaid ride, which I had never been on. I think it's right up there with Peter Pan. LOVED it.

Around dinner time I FINALLY started to feel better. I ate a half a grilled cheese sandwich and half a bowl of tomato soup. We went and bought all our souvenirs and then went and found a spot to watch the parade. It was only about 7 pm but we were both pretty tired and were totally fine just sitting and waiting.

The parade was amazing, of course. The things they can do are so cool. I thought the wait was worth it! We stayed in the same place and watched the Fireworks right after. I was so glad we got to see both, since we didn't get to do either the night before.

The next day was Universal Studios. I think Chris enjoyed this a lot more than Disneyland. I don't think he was too impressed with Disneyland, lol. But he was a good sport. We also got a disability pass at Universal Studios and didn't have to wait in any lines. We did every ride except for we didn't see 2 of the shows offered. It was not crowded AT ALL, which was really nice. I was feeling much better as far as pain and nausea, just kind of tired. But we were still able to get everything in, even with having to leave at 6 pm because they closed for their Halloween Party. I went without the wheelchair too.

We were also able to get some fun pictures with characters. I was beyond excited when I saw Lucille Ball. I had never seen her there before. Anyone who knows me knows I am a huge fan of I Love Lucy. My first car was named Lucy because it was red, lol. I would love to name a daughter Lucy, except I don't think I like the sound of Lucy Leiser. :)

Well I got way off subject, but anyway, it was lots of fun. Chris particularly enjoyed the Water World show. I've seen it twice before and didn't even know it was a movie. I just thought it was something to show all their tricks and special effects. So when we got home Chris rented the movie on Amazon Prime and made me watch it. It wasn't too bad.

Favorite ride!

It was nice to get back to our hotel a little earlier than normal and pack our stuff. We had to get up at 3 the next morning because for some unknown reason our shuttle was picking us up at 4 am. Our flight wasn't until 6:55. They weren't even open to check our bags until 5, so we sat and waited for like 45 minutes. I slept the entire day. While we waiting to check our bags, on both planes, the WHOLE 2 1/2 hour drive home, and when we got home I literally walked in and went straight upstairs to our bed and slept for another 2 hours. I was exhausted to say the least, but it was worth it. 

Hospital Stay 19

Sometime in July or August I started to not feel very well. Still ok for the most part, but just not as good as normal. I didn't really even realize it but I stated to not eat as well and started to lose weight. Like I said, I still felt ok compared to how I've been in the past, so it was subtle enough that I didn't think it was anything too bad. Once I noticed I had lost a few pounds I tried to eat better, but I was nauseated a lot and just couldn't. I also had been getting tons of UTI's so I saw the urologist who had me get a CT scan to make sure there wasn't anything wrong with my kidneys. 

I had an appointment with my GI doctor in SL on August 31. It was just a checkup because I hadn't seen her in 6 months. She had me go get blood drawn while she requested a copy of the CT scan. I was so dehydrated they could not get any blood. She was able to look at the CT scan, and when I went back up to her office, her nurse told me I needed to go get an MRI right away because it looked like there was a collection of fluid that could be an abscess. Since I've had them before she was really concerned. I went and got the MRI and after a few pokes they were able to get an IV started. Then the nurse called me and said that since they weren't able to get blood drawn, she wanted me to go and get some IV fluids to get hydrated so they could draw it. When I got to her office to get the fluids, the nurse told me that the MRI definitely showed what looked like an abscess, so the doctor wanted to admit me to LDS Hospital and give me fluids overnight, and drain the abscess in the morning. 

I was kind of surprised, but at this point, I was like, "whatever." This was my 19th stay in the hospital, and broke my year and half hospital free streak. Luckily it was just overnight. It was nice to get some pain and nausea medicine and feel a little better. The next morning they sedated me a little while the put in a needle and drew out several syringes of fluid. Luckily the fluid was clear and did not looked infected at all. But, they still decided to leave a drain it for a couple days. 

The hospitalist who was seeing me was also concerned about my nutrition. I had briefly talked about it with the GI too. Everyone was concerned with how much weight I had lost. (At this point I was 83 pounds, and had weighed between 90-92 at the beginning of August). From past experience, I know that once I lose weight, it is IMPOSSIBLE to gain it back on my own. In the past I would drink 3 Boost or Ensures/day, plus eat meals and snacks, eating enough calories well above what I needed to gain weight, and after doing this for weeks and months, did not gain a pound. When I feel good and eat normally, I can maintain my weight, but once I lose it, it does not come back, even after I start to feel good and eat better again. When I eat, my ostomy bag is full within 10 minutes. I'm missing so much intestine, that I just don't absorb what I eat very well. The dietitian came and we discussed all this and she thought TPN would be a good option and recommended in her note that I start it. The hospitalist came and said he talked to my GI doctor and they were hesitant to do TPN because of the risk of infection with a PICC line, and my suppressed immune system. He really wanted me to try tube feeding first. I explained that I've tried it in the past, and it makes me sick, even elemental formulas (which are easily digested). But I agreed to try it. I agreed so that they would see it didn't really work and I could get TPN. 

In the meantime, we found out that the fluid they drained was just fluid. Nothing grew out of it and no one could really say where it came from. The best anyone could come up with was that it was a cyst on an ovary or fluid in an fallopian tube. It was kind of strange because I had recently had a pelvic ultrasound and an HSG test (where they inject dye into the fallopian tubes to make sure they are clear) and neither of those tests showed a cyst or extra fluid. So I need to follow up with the fertility doctor and OBGYN about this. The drain was removed by my primary care doctor a couple days later.

When the tube feeding was started we increased the rate it went in very slowly, but whenever it got above 15 or 20 ml/hr, my stomach hurt too bad, so we either had to stop it or bring it back down. This went on for over a week and I had a heck of a time convincing someone to help me and get TPN instead. I actually lost more weight during this time, and weighed as low as 79 pounds. If we lived in a bigger town, it wouldn't have been an issue, but there are no doctors or dietitians here in Roosevelt that manage TPN, and my GI doctor said she didn't do it either so I should find someone else. She actually called me right about when I had tried calling the last person who I thought might be able to do it, and asked if I had found someone. When I said no, she said she would do it. She forgot to send an order to have the feeding tube pulled out, and she was going to be out of the office the next day, so Chris just pulled it out for me. :) He was pretty proud of himself.

That night I was up all night with bad abdominal pain. I felt like I had a bowel obstruction. I've had them so many times I really felt like that was what it was. We went to the ER about 6 am. It took the nurse FIVE times to get an IV started. He even had a cool thing that he shined on my arm and it showed him where all the veins were. My veins have just had it over the years I think. The doctor was not convinced that that was the problem and it was hard to convince him to even do an x ray. Finally he did, and then we did a CT scan and it turned out that there were more cysts on my ovary. I had my PICC scheduled that afternoon, so we went and did that not long after we left the ER. Just a nurse did it, so I was glad I was so drugged up so I pretty much slept through the whole thing. It took a couple hours and involved a lot of blood, but he did a good job. 

So we did get the TPN started and have been doing it ever since. I have had to do it 24 hours/day, but we are working towards only doing it at night. My weight is back up to 82 pounds, so I am getting some weight back, slowly. :) I am feeling better. Still not able to eat a ton, but I am eating. The GI doctor does not really think this has any to do with my Crohn's, and I'm beginning to think so. Lately I randomly keep getting sharp pain on my left side. Sometimes it is only there for a few minutes, sometimes it is there all day. I think it has to do with cysts on my ovary. So more doctors are in my future, but hopefully we can figure it out.

I have appreciated all the prayers and love. I always feel very loved whenever I go through something like this, and I definitely feel the love of my Savior and all he does for me. Chris is also a huge plus! Don't know what I would do without him, really. :)

Waking up after the fluid was drained.
 Bruise from one of many IV's I had

The wonderful feeding tube

FINALLY a PICC line. :)