Sunday, September 29, 2013

Wish Me Luck

Well here are just a few recent happenings...

The day I got sick and ended up in the hospital, I had an appointment with my rheumatologist. I had been waiting for this appointment for a month. Ever since she gave me steroid shots in my fingers last March and April, they were doing really well. But in August when we were on our camping trip I noticed that they were starting to hurt again, and then I noticed that the first two fingers I got the shots in were really swollen. I posted a picture of that in another post. The rest of my hands started hurting a lot so I called the get an appointment. The soonest they could see me was a month away. I thought I was going to die-even clicking my mouse at work hurt. So I asked one of the physiatrists that I work with if there was anything over the counter that I could use to help in the mean time. He's a really nice doctor. He said there was a prescription cream I could get that would help, and said that my primary care doctor would probably call it in for me. So I called, and they actually wanted to call me in something different, but that was ok because it has been a lifesaver. Anyway, I finally had this appointment and I was hoping that she would just give me more shots. She didn't really want to and said that it's not something that they usually do numerous times. She wanted to give the Remicade more time to see if it would help. But then at the same time she told me that Remicade alone usually helps GI stuff, but for arthritis, you usually need another drug called Methotrexate along with the Remicade. The bad thing is you cannot take Methotrexate if you are trying to get pregnant, are pregnant, or are nursing. :( So I left with nothing being done, just hoping that the Remicade would start to work. I have another appointment in 6 weeks from that day.

I had an appointment last Wednesday with the GI surgeon, as a follow up from being in the hospital. We talked about our options and ultimately decided to do nothing right now, which I knew she would say and I am totally ok with. She said that it's good that the two obstructions I've had resolved on their own in just a couple days. She said that the x-ray with the contrast that I had in the hospital did not show any active Crohn's or inflammation that would cause an obstruction, and that's why they think it is scar tissue. She said if there was active Crohn's, she'd be more likely to go in and fix it, but surgery just causes more scar tissue, so we are going to try to avoid that right now. If I get another bowel obstruction, we might have to change our minds. I told her that the Remicade has been working well, and that I'm not having pain from the fistula, so are not going to rush into surgery for that either. I wish I would have asked her what I should do if I get another obstruction-should I go to the hospital as soon as I'm sure that that is what's going on? Or wait until it 's really bad and I'm throwing up. I like to wait because sometimes they will resolve on their own. I think if it happens again I will call her and ask what I should do.

And now the bad news. This has ruined my week and it's all I've been able to think about. Last Monday I was receiving my Remicade infusion and the nurse and my doctor thought that I was having an allergic reaction to it, so they stopped the infusion and the doctor said that we will probably have to switch to Humira. It's a biologic drug like Remicade, but is a shot you give yourself. It can also be effective in helping fistulas heal, but not as good as Remicade. :( :( :( :(
Here is what happened: I was almost done with the infusion (let it be noted that most reactions occur at the beginning of infusions, and this was at the end). Anyway, I started to feel a little sick to my stomach, but it wasn't that bad and I did NOT feel like I needed to throw up or anything. The nurse asked me if I was ok and I told her that my stomach hurt a little. She immediately got me a container in case I needed to throw up. I started coughing and she started asking me if I was ok again. OK- remember how I said I had the flu in the last post, with a sore throat and cough right after I came home from the hospital?? This was my same cough and I told her that. I was getting over it and that was why I had not really coughed before hand. Then she asked me if I felt a "lump" in my chest, or a heaviness. I said no at first and she kept asking me and then I kind of felt like I did. I felt like I needed to take a deep breath, and when I did, it was kind of hard to do. Honestly if she hadn't asked I probably would not have noticed. That is how insignificant it was. But she checked my oxygen stats and they were fine. She asked me if I wanted some oxygen on and I said no, I was fine. Then she checked my heart rate and it was 121.

Ok side note on the heart rate-clear back when I had my colon removed, my heart rate was really fast. Three years ago I was noticing my heart rate was fast a lot, and sometimes I would feel short of breath. Dr. Smith had me get an EKG and a chest x-ray that came back normal. He was concerned I had a blood clot, since I had had them before. My symptoms went away and I stopped thinking about it. The last two times I was in the hospital and every time I have any doctor appointment I am always asked if my heart rate is always that fast. I say yes. Sometimes it is faster than others, sometimes it is only in the 90's (normal is 60-100). I had an appointment with my primary care doctor an HOUR before my Remicade infusion, and my heart rate was 121. My doctor was a bit concerned and said if I ever had symptoms of dizziness or anything, than I should let her know, and threw out there that I could have sinus tachycardia. Oh great. Isn't that something that old people get!? And then my heart rate was also 121 BEFORE we started the Remicade. Ok so no reason to worry that my heart is racing from the Remicade, RIGHT?

Okay back to the infusion: the doctor came in and the nurse put oxygen on me, even though my sats were fine. I will admit it did help me feel more comfortable. But again, my oxygen saturations were normal. I was not in any danger. The doctor and the nurse stared at me. I stared back. I told them I was really fine. When the doctor said we might have to switch to Humira my heart sank. The Remicade was working SO well. The thing with these biologic drugs, is eventually, a lot of the time, they stop working. What if I start Humira and it stops working after a year? Then what? There are only so many drugs to try. I don't want the Remicade to be stopped when I barely started it. I truly believe that the doctor and nurse over reacted, and that my symptoms did not have to do with the Remicade. Even if they did, I don't think it was bad enough to stop it, (and they even cancelled my next appointment!) The nurse gave me a hug goodbye like she was never going to see me again. Are you kidding me? Just like that? Believe me, if I felt like all of a sudden I couldn't breathe, I was going to throw up, my heart was racing (and usually didn't do that), and I started coughing-then I would understand that it would be dangerous to try again. But I have talked to people that get hives at the beginning of an infusion, and still get it again, as long as they can be controlled with Benedryl. I could keep ranting but I will stop now.
I have an appointment with my GI doctor tomorrow to "talk" about it, and since I missed my last appointment because I was in the hospital. Chris is going to come with me and together we are going to explain what really happened and hope he lets me continue the Remicade. If I didn't get to continue it, I would feel like it was being taken away from me unfairly. The one thing has made me feel this good for this long in 7 years. Imagine getting a great job that you are really good at. This is the best job you have ever had. You have been waiting for this opportunity for several years. You finally know that this is where you belong. And then it gets taken from you, just like that, no discussion. You get a offered a different job in its place, but oh by the way, we don't know how long this new job will stay with you either. And you might not like it as well. And you might not be as good at it. That is kind of how I feel.
I will say that I talked to my ever wise mother tonight, (who I miss a lot, btw!) who reminded me that Heavenly Father has a plan for me, and if the doctor decides to switch me to Humira, then there is probably a reason. Maybe I would have had a bad reaction at the next infusion. Maybe it would have stopped working anyway. Whatever the reason, I will try to be ok with it if I do have to switch. I have been praying that everything will work out ok, and I trust that whatever happens will be the best for me, and it is the Lord's plan, and He will always be there for me.

On a completely other note, I just want to say that I was released from Cub Scouts this last week. I am now the piano player for Relief Society. I am very excited about this. I actually didn't mind scouts, but it was hard for me to feel like going to den meetings, after working all day. Even on days I feel good, I don't always have the energy I would like. And lately with being sick and in the hospital, I have missed a lot of meetings and I wasn't feeling too dependable at the moment. The Bishop told me that they felt this new calling would be easier for me, and I agree. :) I think it will be less stressful.

I will update after my appointment tomorrow, which brings me to the title of this post...Wish me luck!

Take Steps Walk

This last Saturday Chris and I walked in the Take Steps Walk for the Crohn's and Colitis Foundation of America. We only signed up for it 10 days before, because we almost forgot about it! But we had been talking about doing it for a couple of months. I raised $100, and together everyone in Spokane raised $14,000, all going towards research for treatments, and hopefully someday, a cure. Thank you so much to everyone who donated! I really appreciate it. Next year I hope that we live closer to home. It would be fun to do the walk in Boise and have more family there with us. We walked 2 miles. I wasn't even tired at the end. I don't think I could have done that one year ago! So thankful for the progress I have made and that I have been doing well.

Wednesday, September 18, 2013

Sick again!

Ugh! I feel like this is all I keep writing about...but I had another stay in the hospital this last weekend. Let me first go back to the last time I was in the hospital, about 7 weeks ago. The day after I came home, I had my 3rd Remicade infusion and within the next couple of days I started to feel really good. I went to work that week on my normal schedule, Tuesday-Saturday and was totally fine. I have felt great ever since then. Yay! But then Thursday (the 12th) I was at work and around 10 am started to not feel so good. A different pain than usual, but one that seemed familiar...I ate a pudding cup at noon and was still feeling really bad so I didn't eat anything else the rest of the day, which was disappointing because I had brought a lunch with leftovers that I was really excited to eat. Anyway I got home about 4:30 and crawled in bed. Chris came home about 6 or 6:30 and I was still not feeling good. I knew by this time that I had a blockage but I was hoping it was just pass. I have read that massaging your stomach would help it pass so I was trying to do this, even though it was painful. Not long after Chris came home, I started to feel significantly better. I thought that it was finally passing and we could avoid going to the hospital. Chris made me a smoothie, which I ate, but not long after the pain returned. I went to bed still having lots of pain. I had an appointment with my GI doctor the next morning at 8am, and thought if I could just make it until then, then I could avoid the ER. We also didn't want to go to the ER at 9pm because last time we had to wait over 2 hours to get seen and I was in agony. I slept off and on. The pain would come in waves, sometimes I would feel like I could do this, and then I would have a few minutes where I just wanted to go to the hospital. Finally around 2am I threw up a few times. This helped me feel somewhat better and I went back to sleep. But I woke up again a little after 3 in more pain that I had had yet. I told Chris we needed to go to the hospital, so we packed some things and Chris drove me there. Luckily there was no one else in the ER, I was so happy. We had to wait a couple minutes for someone who was in the triage area, and then they took me back. The lady registered me and actually started an IV and gave me some zofran (med for nausea) right then. By the time we were done, a bed opened up and they took me back. But they were really busy back in the ER and it was quite a while before I got any pain meds. The doctor couldn't see me for a while, so I had to go get an x-ray before I even had pain meds. I wasn't happy about it, but I survived. After the x-ray was done, the x-ray tech left the room and said someone would come get me and take me back to my room. I waited there at least 20 minutes ( I know because there was a digital clock on the wall) and I was really upset. Finally I called for him and he came back in and I asked him if someone was going to come get me. He said in a minute and left again. A minute later he came back and said that he would just take me. When we got back to my room, the nurse said the doctor had just been in looking for me, but I wasn't back yet. Great. Well he came back a couple minutes later and said that my x-ray showed I had a bowel obstruction. He was going to give me something for pain (finally!) put an NG tube in, and call the GI surgeon on call. The GI surgeon cam and said that since this was the second time I had had a bowel obstruction in 6 weeks, that I might need to think about having surgery to have scar tissue removed that was causing the blockages. He said we wouldn't make any rash decisions, but it was something to think about. I finally got up to a room about 7 am I think. I had to share a room and I wasn't happy, but they said they could get me a private room the next day. That night I asked if Chris could stay the night with me, and they said no since my roommate was a female, and he was a male, and that I needed to be considerate of that. I started crying, so the nurse asked my roommate if she minded if Chris stayed, and she was really nice and said it was fine. But they never got Chris a cot so the poor guy had to sleep on 2 chairs pushed together. I felt bad after that. I actually asked him in the middle of the night if he wanted to go home, but he said he wanted to be here when the doctor came. I really liked the doctor on call this time. He has actually been recommended to me a couple times, and I think he is the one that my GI doctor likes to refer people to. My surgeon came in on the morning I was admitted (Friday) and said that she wouldn't be around on the weekend, but that I was in good hands. I really like my surgeon too. I asked her what she thought about having surgery to get rid of scar tissue, and she said that surgery just causes more scar tissue, so she wouldn't jump to that right away. That made me feel a little better, but then I didn't know which doctor to believe. Anyway, the next couple of days were ok and I started to feel better. I was able to have ice chips and popsicles which was really nice. I had really good nurses this time and the second morning there they moved me to a private room. Then Chris got a cot to sleep on the rest of the time.
Before they moved me to the private room on Saturday, a dietitian came and talked to me. I never really had the chance to tell her that I am a dietitian too so I felt like the whole conversation was kind of awkward. She was saying that if I couldn't eat soon, then they might have to start "nutrition through an IV." I was like, "you mea TPN?" Haha she was surprised I knew what that was. Anyway, on Saturday they did a test where they put a tube into my stoma and injected contrast (which hurt my stomach and I cried a little). They were continuously taking x-rays to see if the contrast made it all the way back up to the stomach. The doctor said later that they didn't see anything physically blocking anything, like food. This means that I am probably getting these obstructions from scar tissue. On Saturday they clamped the NG tube and waited 4 hours and hooked it up to suction again for 30 minutes, and if there was less than 150 ml of output, then they would clamp it again. So they clamped it again and there was not very much output a second time, so they removed the tube Saturday night. The doctor said I could have clear liquids which I got for dinner. The next day at lunch I got full liquids, and the next day (Monday) I got a regular diet. They also switched me to pills for pain meds instead of a pain pump, and said if I tolerated breakfast and lunch well, then I could go home. So I got to go home on Monday about 2pm. We were so happy to go home! (I will spare you the picture Chris took of me sleeping with an NG tube in my nose and my mouth hanging open-I was pretty out of it some of the time).

I felt pretty good when we got home, but Monday night I started to notice my throat was REALLY sore, and I was getting a stuffy nose and body aches. My throat had been sore ever since they removed the tube, but now it was worse. I woke up yesterday feeling REALLY crummy. I stayed in bed most of the day. In the afternoon I got up and took a shower and got right back in bed, with my hair wet and everything. Chris surprised me by coming home around 4:30 when he got off of work, instead of going to class. I was really glad to have him home. I had body aches all day and felt like I had the flu. Last night I didn't sleep great, so I was up on Pinterest at like 5am, but was able to go back to sleep around 7 and sleep until 10:30 this morning. I have showered and made it out of bed now and am already feeling tons better than yesterday. Luckily things worked out so I could stay home from work until today. We have a student with us right now who has been doing a lot of my work anyway. :) I was pretty put out that I had to miss Tie Dye day and Western Day at work though. This week is Rehab Week, and so they have something different going on every day at work, and give treats and things out to all the employees every day. Friday there is a BBQ and they give out awards. I was nominated for the Rookie of the Year award. :)  I will let everyone know if I get it! (I can't believe it has been a whole year since I have worked there)! I always feel bad when I get sick and can't work, but am blessed to have a great boss and great co-workers who understand. Just when I was feeling great, I had to go and get sick again, but I try really hard to take care of myself. I drink lots of water and chew my food really well. I will have an appointment in the next week or so with surgeon, and talk about the possibility of surgery. If I do have surgery, they will go ahead and remove the rest of my rectum at the same time. At my last appointment with my surgeon, she said if my fistula doesn't show signs of healing by November, then we would do surgery. She said it's not a major surgery, but is sometimes hard to get the incision to heal because of where it's at. But right now I just take it one day at a time and try to not worry too much. We will deal with whatever comes when it comes. :)


The first weekend in September, I had the opportunity to attend a conference on Adult Weight Management in Portland, Oregon. Chris came with me. We didn't have tons of time to do much else, but we still had a good time. We were surprised when we went to board the plane, and it was so little that we had to walk outside to get on. Since it was only an hour flight, we decided to fly there the morning that the conference started, to save a night in the hotel. Our plane was on time, and at the airport we got on a train that stopped across the street from our hotel, and we were set to be there on time. But somewhere along the way the train stopped and made us all get off because there was an "incident" and the train was turning around and going back to the airport. They said there would be buses coming that would take us to the stop we wanted. Well we could never find a bus that was going as far as we needed to go. As time went by, we found out that a woman had stepped in front of the train at a stop really close to where we needed to go, and was stuck underneath it, so trains were not going that far. They finally announced that trains were going to go as far as our stop, so we got on a train but quickly realized we were going the wrong way. So we got off and got on the right train and made it to our stop. I made it to the conference about 45 minutes late. But we made it, and I was really glad that I wasn't alone and that Chris was there with me! We found the next day that the woman died.
One night after I was done we went to the Museum and Planetarium. It was a Thursday night so it closed early, at like 7, so we only about an hour there. We just did some of the free stuff-there was a science museum kind of the like the Discover Center in Boise. They have a submarine that is just sitting out in the Willamette River. They give tours of the inside but we didn't have time to do it. Chris was really disappointed. It's actually the submarine that was used in the movie The Hunt for Red October, which is one of Chris' favorite movies. 

 Of course, they had a penny machine!!

 The next night, Friday night, one of Chris' old roommates and good friends who lives in Portland came and picked us up and he and his wife took us out the eat and then drove us around Portland. This is the waterfront of the Willamette River. It's not a great picture, but it was really pretty. Portland is a lot bigger then Spokane!

On the way home on the plane we had a good view of Mount Hood from the airplane.

 I was really excited to do this Sudoku puzzle in the magazine on the plane, but was really disappointed when I realized I couldn't!

When we got home I added my pennies to my book and they filled it up! (The empty spaces are actually for quarters). This book came from Disneyland so I told Chris that I guess we need to make a trip to Disneyland to get another one! Haha, I don't think he thinks that is necessary right now!

We wished later that we would have stayed another night and had more time to spend at the museum. There is a planetarium, an IMAX theater, and a dinosaur. I've always wanted to see a dinosaur in a museum. Someday I guess! We had a good time. I got to go the a really good conference, which gave me all the continuing education credits that I need for the next 2 years, and I was glad Chris got to go with me.

Gonna move to the country, gonna eat me a lot of peaches

Whenever I think of peaches I think of this song by the band The Presidents of the United States. It's an old song, and it's kind of weird that they decided to write a whole song about peaches, (unless there is an underlying message that I'm missing) but it's got a catchy tune...and if you watch the video to the end, you'll see some sweet ninja action!

Chris and I really wanted to get some peaches this year to can. My mom used to can peaches every year, and I loved it. I also have lots of memories eating canned peaches with bread and butter at my Grandma Tuttle's (Olson) house. She lived across the street from us for a while when I was younger, and sometimes she would babysit Kyler and I and she would always feed us canned peaches. YUM! Every year in July and August I start to crave peaches and cream. I also grew up eating fresh peaches with cream and sugar-so good! So I bought a box of peaches through a girl in my ward for a good price, but then realized I should have gotten more. So on Labor Day Chris and I went to an orchard here in Spokane and picked a couple more small boxes. We rode a tractor out the peaches and then rode it back.  It took us most of the rest of the day to get it done, with lots of phone calls to my mom, but we were very happy with the results!

It was a lot of work and I was so glad Chris was there to help me! We are very excited about our peaches!