Saturday, March 31, 2012

Just FYI

Well just a short update of how things are going. I am doing much better and finally feel like I just might make it. :) Right now the plan is to hopefully go home on Monday. This morning they finally pulled out the drain tube I had in. When they did the surgery they had to flush like 7 liters of fluid in me to rinse out stool that had escaped out of the bowel, so I have had a drain coming out of my stomach with some of this fluid. It feels really good to have it out.
Wednesday they closed my incision all the way with staples. We were all surprised how big it was. The first time Chris saw it he said "Jill no wonder you're hurting." My mom didn't think it was any bigger than my last surgery but when she saw it she couldn't believe how big it was either. It goes up past my belly button and is probably 8 in long or so. I have pictures that I might post later. Fair warning they are not very pretty so don't look if you have a weak stomach. The doctors are a little worried about it being infected because of some drainage that is coming out (I know, again probably TMI). They don't want to have to open it back up again but they think as long as it's draining good they shouldn't have to worry about that.

I have been eating for a few days and have been eating solid food for a couple days. I can't eat a ton at once but I'm getting there. It certainly is nice to be able to eat whatever I want though, finally. I am still receiving TPN. The surgeons said they want to keep me on it until I go home, but the GI doctors said they want me to go home on it and get it at least at night for awhile. They really want me to gain weight and to be getting extra calories, so we will see what happens. The surgeons felt like it wasn't worth the risk of infection, the GI doctors felt like it was really necessary.

Yesterday was a hard day. They took me off of the PCA pump and changed to pills. I was in a lot pain (I think because I slept really good during the night, meaning I wasn't pushing the button, and so I got behind on pain medicine and it took a long time for for the pills to kick in). I was really nauseated and they scheduled nausea medicine every 4 hours so that helped. I basically layed in bed most of the day barely moved and eventually felt better. I was able to drink some Ensure and eat some soup later and actually showered in the evening, which felt really good. Today was MUCH better and I felt pretty good all day.

My left arm is improving slowly. The occupational therapist has worked with me a lot which has helped. It is still somewhat numb but it's getting stronger. The OT said all my range of motion is there, it's just a strength thing. He said it would help if I continued to have therapy 2-3 times/week for awhile. He thinks it should get back to normal just fine. I'm not as worried about it as I was. I can touch my finger to my nose now and have more coordination so that's good. I feel like a stroke patient sometimes, haha.

It looks like we have lost my phone and iPod so that's pretty sad. I love my iPod. The day I went down for biopsies we left them in the room because we were only planning on being gone for an hour. Then I ended up having surgery and moved to the ICU and when my mom and Chris went back to get all our stuff, it had been packed up and taken out of the room. They never could find my phone or iPod. The hospital really felt bad and did everything they could to help us but to no avail. I have the "find my iPod" app but it couldn't pick it up and there has been no activity on my phone like someone's used it. The phone finally started going to voicemail after a few days. Maybe they will still turn up, we"ll see. Anyway, start messaging me your phone numbers on Facebook so I have them. :) We will get me a new phone when we get home.

So that's how things are going right now. Once again we are so thankful for everyone's love and prayers. They have definitely been felt. I will try to update this a little and when I get home and can fill in all the blanks and post some pictures. :)

Saturday, March 24, 2012

Unexpected Turn of Events

I thought that I would try to write an update on what's been going on. Actually a ton happened but I'm going to try to make this as simple and to the point as I can but it might still be a bit lengthy.

So since my last post I continued to improve little by little everyday. Last Wednesday (the 14th) we took a trip to Logan to visit a friend of Chris' dad who we were going to talk to a little about what she knows about Crohn's and diet, etc. As the day went on I began to feel worse and worse and by the time we reached her house I was in a lot of pain. We were there for awhile before I was in tears and decided that we needed to go to a hospital. I was having symptoms of an obstruction, and hadn't been able to go the bathroom since we left our house that morning. We drove to a hospital in Logan and went to the ER. I was in so much pain all I cared about was getting some relief. They gave me pain meds, but had to give it several times before the pain was even bearable. They did a CT scan and said that it showed maybe some air and stool in the intestine, but nothing too significant. At this point I had never been in this much pain before in my life. I cried. A lot. I really didn't think that the hospital in Logan would try to make me go home in that much pain, especially since my home was 3 hours away, but they basically made me leave. We stopped at a gas station before leaving town and I didn't think I could make it. I threw up some (I had also thrown up CT contrast in the ER) and I told Chris I could not ride in a car for 3 hours, but he said we just needed to get me to Twin because they are familiar with me and could help me more and that the ER in Logan would just send me home again. Luckily Chris' dad was with us so he drove while I laid down on Chris' lap in the backseat. Now at this point I thought it was the worst pain I had ever experienced and the worst/longest 3 hours of my life. Chris gave me a blessing and I was able to sleep some, and eventually we made it to Twin.

We dropped off Chris' dad but I wouldn't even let Chris take me home, so we went straight to the hospital. They gave me more pain medicine but I was still in so much pain I could hardly stand it. We weren't in the ER for very long when they told me that Dr. smith was on call and was admitting me. Chris went home about 5:30 so he could get ready for work and his dad came back and stayed with me until my mom got there about 7ish. They did an x-ray which showed lots of stool in my intestine so Dr. Smith wanted to do a sigmoidoscopy to help decompress it and get it out. (BTW, sorry if this is TMI). They weren't going to be able to fit me in until the afternoon but I was in so much pain that they were able to bump me up to 10:30. I was really happy that Dr. Smith was actually on call and I felt he wouldn't stop trying until he had some answers. Well I remember waking up from the procedure and Dr. smith explaining to me that they were going to life flight me to SL to the U of U Hospital. It was all kind of a blur after that. My mom texted Chris and told him he needed to call her so he took his break early. After talking to her he told his supervisor that his wife was being flown to SL and went home and packed some things and came to the hospital. Dr. Smith was able to clean out my J-pouch quite a bit, but when he could actually see the intestine itself, it looked sort of blue and like it was not receiving the blood flow it needed for the tissue to survive. He said he'd never seen my pouch look like this before. He wanted me to go to SL in case I needed surgery, they needed to remove or reconstruct my pouch, etc.

We were originally going to fly in a helicopter, but the weather was bad so we had to take an ambulance to the airport and get on an airplane and then fly into the airport in SL and taking an ambulance to the U of U. My mom drove Chris' car to SL and Chris rode on the plane with me. I was a little disappointed that he couldn't sit in the back with me because there wasn't room for him, but he got to sit in the very front with the pilot which he thought was way cool.

Well I wrote this above part a few days ago when I was feeling a little better....
After all this, a bunch of other stuff happened that I will write about in another post. But I just want to give an update of where we are right now. Here is a message that Chris sent to his family that explains what happened.

Sunday, March 25, 2012. 5 PM.

This message will be too long for a text message so I'm sending it on Facebook. Jill was scheduled for a sigmoidoscopy for tomorrow morning to get some biopsies to test for a few viruses. They moved the procedure to this morning at 11. They went in and got some biopsies. After she woke up, the doctor thought it might be a good idea to get a few more biopsies to test for a few other things. When going in the second time, they noticed a perforation in the bowel about 1 inch in. They immediately withdrew the scope and let Jill wake back up. They x-rayed her and compared it to previous x-rays to when the perforation occurred. They found that it happened this morning the first time they went in. It was decided that it probably wouldn't heal on its own and they didn't want to risk that especially since there was a lot of stool in her intestines that could escape into her abdomen and contaminate other organs. All this happened from 11 this morning till 4 this afternoon. She went into surgery at 4:10 this afternoon (Sunday). It's expected to take 3 hours give or take 30 minutes. Her J-pouch is in such bad shape that they want to give it time to heal so she will wake up with an ileostomy bag. It's supposed to be temporary but it might be permanent if the J-pouch doesn't heal. They are going to fix the perforation with some tissue from the J-pouch. While she is in surgery, they will try to repair any of the strictures that are accessible. It's called strictureoplasty if you'd like to look it up. As the week has gone on, it's been more likely that she would have surgery on Thursday. It's unfortunate that there was a perforation but because of it, the surgery on Thursday is cancelled so we might be coming home sooner than we thought. I gave her a blessing and she gave me a smile before they wheeled her into the operating room. Hope to see everyone soon. We appreciate the prayers and all the help.

Sunday, March 25, 2012. 7:15 PM.

The surgeons just came out to talk to us. Her J-pouch looked really bad and in terrible shape. Some of her intestines and the J-pouch were actually out of place and looped around each other so they decided to take out the J-pouch. They told us that her intestines were in good shape and not to a point to cause all the pain she's been having. The surgeons were optimistic that she should feel much better when she recovers.

Monday, March 26, 2012. 1:30 PM.

Jill’s Mom and I saw Jill right after surgery last night and she was in good shape. I had never seen anyone after surgery so I didn’t know what to expect. All her doctors and nurses were very surprised at how well she was doing considering how malnourished she was. I took their word for it that she was doing good cause to me, it looked like she was hurting bad. I guess that could be expected though. They put her in the Surgical ICU because of how suppressed her immune system was and they thought she might become septic. But she’s doing great. It was hard to leave her last night but Nada and I needed some sleep. We came in again this morning and her bed was tilted up and she was watching TV. She’s been on two walks this morning. The doctors are very pleased that she is doing so good. Her small intestines are in good condition. They had to remove 30 centimeters of the end of it but the rest of it was good. She also woke up with hardly any feeling in her left arm. The doctors think it may be from laying on it during the surgery and that maybe a nerve got pinched. They think it will get better over time. Overall, she is doing better than expected. Doctors say 7 to 10 more days in the hospital for recovery.

Wednesday, March 28, 2012.

This is Jill again. I am doing much better. The biopsy that they did to test for the virus CMV came back positive. The doctors think this caused the problem with the J-pouch. I was moved out of the ICU Tuesday. I was having a lot of pain the first couple of days but we think we've got it under control now. They left my incision partially open because of the risk of infection but they are planning on closing it with staples tomorrow. The feeling in my arm is coming back slowly. I am able to lift it up some and grip some things which I could not do right after surgery. They are still concerned about my nutrition status but I did get to drink juice yesterday and I might get to have Jello today. I am still receiving TPN. Last night I went outside for the first time in almost two weeks. Today I get to wash my hair for the first time since Friday! Because of all this, I have a permanent ileostomy, but I am looking forward to feeling good again! Things are going better than the doctors expected and hopefully we will be able to go home early next week. Thank you for all your prayers, fasting, thoughts, phone calls, visits, love, and support.

Friday, March 16, 2012

My wife, Jill

Today’s blog post is being written by Chris, the husband. Not Jill, the wife. Jill’s blog is sacred territory to her so I hope I don’t get in trouble for hijacking it but I just want to tell you all how great she is. Jill is always saying wonderful things about me on here (most of it is untrue). I think I’ll tell everyone about her for a change.

My life has gotten better everyday since I met Jill. She makes it so easy to be married to her. She has been such a support to me. She doesn’t feel like she does a lot but she does so much. She’s actually the reason why I got accepted to Penn State for graduate school. I was so sick of filling out school applications. I got real discouraged one day a few months ago and almost didn’t finish the application for Penn State. After a few hours of moping around, I found a note on my bathroom mirror that said, “ Chris, I just want you to know I love you so much. I am so proud of you and I know you can do anything you want to. Love, Jill.” I don’t think Jill realized at the time how much that note meant to me, but I decided then that I couldn’t let her down so I got the computer back out, finished the application, interviewed on the telephone a few weeks later, then got accepted to Penn State Graduate School a few days after that. She is such an inspiration to me. I don’t know how she deals with her sickness so well. Jill has been dealt a tough hand and she’s played it well. Even with her sickness, she is a great help and support to me. I hope this wasn’t too mushy for you all, but I really wanted to make sure everyone knew how great she is.

Love you Jill.


Also, I would like to echo what Jill said in her last post. We are extremely grateful for everyone who has helped us over the last few weeks. Jill’s mom, Nada, for coming to stay with Jill so I could go to work. Jill’s aunt, Laura, for working for Nada. All of our parents for dinners, cleaning the house, doing our laundry, and for the visits. Jill’s co-workers for picking up the slack for 3 weeks. Melissa for bringing dinner. And all our family and friends for your visits and prayers. I didn’t want this to turn into an Oscar acceptance speech but we are truly blessed. So thank you all. Mostly, we are thankful for a loving Heavenly Father, who hears our prayer and often immediately answers the cries of a choice daughter when she needs relief. He has intervened numerous times and has taken over at the right moment.


I’m also grateful for those little bottles of 5-hour energy that allow me to stay awake most of the night with Jill and then go to work the next day.

Jill is thankful for nurses who can insert an IV into a vein in one try. (They are few and far between but she loves them.)

Lastly, we are thankful to Ameriben, Jill’s health insurance company.

We are incredibly blessed and have much to look forward to.

Monday, March 12, 2012

7 Days in a Hospital Bed Makes One Weak!

....according to my husband. :) Well I mentioned in my last post that I have been in the hospital. As I also mentioned, I had not been feeling well. Really I haven't felt that well since we got married. (Yes, it would seem we could blame it on Chris, but we won't)! I started taking a medication that is a shot once a month, and I think it helped some, but things got worse again. My problem lately has mostly been just lots and lots of pain. My stomach just hurts constantly, which is so exhausting! I have missed lots of work, but luckily my boss and everyone there are so understanding and good about it. My boss has really worked with me a lot to help me, and at his suggestion I applied for and was approved for FMLA (Family Medical Leave Act), meaning that they can't fire me because I'm sick a lot. There are just some days when I cannot make it through the whole day and have to leave early, or even go in a couple hours late if I had a bad night. I have tried really hard to be there as much as I can because we are a little short staffed, but everything has been ok, so for that I am really grateful.
Well anyway, Monday February 27 was a bad day. I didn't get to work until 10 am and when I got there everyone told me I looked terrible and I should have just stayed home. I had been trying really really hard to build up my PTO again (Paid Time Off), and so that's a big part of why I went. Plus it was Monday and I felt guilty because Mondays are always so busy. Well I ended up lasting until about 3:00 and went home and went to bed. That night I didn't sleep much and was in so much pain I could hardly stand it. Tuesday morning I sent Chris to work, telling him I would let him know if I needed him to come home. He has missed a few days because of me and I didn't want him to use another sick day just to stay home with me all day. Well at 7:30 I called Dr. Smith on his cell phone, that's how bad it was. He said I had two choices: either he could see me in his office at 12:30 or he could just admit me to the hospital. I chose the hospital and he said he knew it must be bad if I was asking to be admitted! So I texted Chris and told him and he came home about 8:30 and helped me pack some stuff and off we went. They had a really hard time getting an IV in, I think because I was so dehydrated. Dr. Smith had asked me on the phone if I wanted to just get a PICC line (Peripherally Inserted Central Catheter), or try an IV first and I said lets try an IV. Well when they finally got it started, it was right at the bend of my arm and every time I moved it stopped working and beeped really loud, so the next day they ended up putting in a PICC line anyway. That was actually really nice because that meant no more pokes for blood or anything the rest of the time! Here is a picture taken the first day there. Sadly, I probably look the best in this picture. As the days went on I think I looked worse and worse, haha.

I was there for 7 days, from Tuesday to Tuesday and I feel like the time just disappeared. I feel like I hardly remember anything! The first day was kind of boring. Once everything got started, and I got a morphine PCA pump (Patient Controlled Analgesia-a button I could push every hour to give me morphine) then I started to feel a little better. I watched like 4 episodes of Reba on TV that first day, haha! I was really upset though, because I had to go down to x-ray twice. When I got there the first time they said they didn't see where a pregnancy test had been done (even though the nurse had said they were doing one) so they wouldn't take the x-ray because they weren't sure I wasn't pregnant. So later we had to do the whole thing over again. I was almost in tears, it was so frustrating. My mom came down that night and I think she stayed the night at our house that night and was there the next day too. Details and days get a little blurred to me so this might not be entirely accurate. I will have to ask Chris for sure.
Here is a picture of my mom and I-again I have no idea what day this was. I am wearing a pediatric gown that they found for me, that fit me more like a t-shirt so that was nice. I wore pajama pants the whole time too, which was a lot more comfortable. The nurses wouldn't let me wear my own shirt for the first few days but finally I talked them into it. :) The first couple days I had the pain button, but it was causing my blood pressure to go really low, giving me headaches and making me dizzy and lightheaded when I got out of bed. I was so out of it and weak that 1-2 people had to help me up to the bathroom. The first night Chris got up a million times with me, after that I mostly just started asking the nurse to help me so he could sleep. Chris slept in a chair that reclined all the way flat most of the time. The last few nights he usually moved over to the couch sometime in the middle of the night-I don't think either were very comfortable, poor guy!
I don't remember if it was the first or second night, but there was one night when I had some sort of anxiety attack or something. I was breathing really heavily, which concerned the nurse so she checked my oxygen but it was fine. I couldn't calm down for some reason and started crying. Chris and my mom and the nurse were all trying to help me. It took me awhile but finally I got over it. I don't know what happened. I remember apologizing and the nurse telling me I didn't need to be sorry for anything.
After a couple days they changed the pain medicine they were giving me so that I was getting pills and IV medicine. This seemed to work better and didn't make my blood pressure go so low. I was also getting IV steroids, antibiotics, fluid for the first couple days, and my good ol' dietitian friends started me on something called Procalamine. It's a form of nutrition support we use in the hospital. It is meant to just be supplemental and can be given in just an IV (it doesn't have to be through a PICC line like TPN does, although mine was because a PICC is what I had). I was probably getting 500 calories or so from it. Everyone was very concerned about how I was eating. The first day I was on a Clear Liquid diet, and my friend Melissa who I work with called the Dr and got it changed to Full Liquid and also started me on a calorie count! That is something else we do when someone is not eating very well. The nurses wrote down every single thing I ate for 3 days so that they could calculate how many calories and how much protein I was getting. I don't know the results, but I know that most of the time I was there I just drank milkshakes and Ensures. One nurse even started me on TwoCal. It's a supplement like Ensure, only with even more calories and protein. We write orders to give 2 oz four times/day to patients that aren't eating very well. It tastes pretty good, but it's really thick and hard to drink a lot at once, so if we give 2 oz at a time with medications, then they get 500 calories out of it by the end of the day. I'm used to people telling me I need to eat, and I was trying, but I just did not have an appetite at all. One thing I did discover that I could eat was a cheese casadilla. I ordered that twice and both times ate 3/4 of it. I couldn't even eat very much mashed potatoes or pasta (which are two of my favorites) when I ordered them, but for some reason the casadilla was good. The second day I was there one of my nurses upset me a little bit. I shouldn't have let it get to me, but let's remember I was very sick and tired and not in a great mood. She started asking Chris (right in front of me as if I wasn't there) how I normally eat and if I pick at my food, etc. He told her I eat good when I feel good. She then asked me flat out if I'm anorexic! I told her no, I'm sick. She was asking me about my weight history. I lost about 10 pounds a few months ago, but lately it has been pretty stable, and I had actually gained 2-3 pounds back. She gave me a lecture about how important it is for me to gain some weight and eat better (and she knew she was talking to a dietitian). One time she caught a glimpse of my back and asked if I have scoliosis. I said yes, and then she said, "oh my gosh you are so skinny!" As time went on I did start eating a little more and that's one thing the Dr was happy about when I left. When I told him I ate 3/4 of a cheese casadilla, he said that was great and then asked if I wanted to go home. (More about that later).
One day I was with it enough to play a game of Five Crowns with my mom and Chris. I don't think we played a whole game but it was nice to do something besides just sit there. Most of the time I feel like I just slept and did nothing. I brought a book, and Chris' stepmom gave me a book with word searches, sudoku, etc, and we brought a couple movies, but I never had any energy to do that. Even getting on the internet to look at Facebook for a second would put me to sleep. Anytime I tried to send a text message I swear it took me 20 minutes because I was so tired. I watched a little bit of TV during the day, but hardly any at all. In the evening we would watch American Idol or something and I usually couldn't stay awake for that either. The IV pain medication and nausea medication just made me so tired. Chris said I said a lot of funny things, which I don't remember. I asked him once if he talked to "Sister Leiser." I also asked him if the books were all at the back of the line. (I know it doesn't make sense). There were a couple other things that I will have to ask him about and add later because I don't remember. Anyway, I think he got a good laugh.

After a few days I finally decided I could get up and walk around a little bit. I usually could not last very long and would end up being pushed around in a wheelchair, but it was nice to get out of the room.
Chris laughs every time he sees this picture. He said I was so tired at this point that I was talking with my eyes closed. I asked him to take a picture of me and when he told me to smile, I looked up and smiled, and then went right back to having my eyes closed. Glad I could give him a laugh. :)
So basically every day we were just waiting for me to feel better. The Dr would tell me to see if I could go without the IV pain medication, and I never could. It didn't even seem like I was there for 7 days (I'm sure it did to my mom and Chris), time just went by. Looking back I wish I had been a little more with it and able to ask more questions about other things we could try, etc. While I was there one day I noticed that my throat was really sore. I looked at it with a flashlight and it looked terrible, with lots of white spots on the back (sorry if that's gross). It honestly looked like I had strep throat. My tongue also looked like it had thrush, which I have had before when I've taken antibiotics. The nurse called the Dr that night and he said he would look at it in the morning. When he did he said it was probably either strep or thrush and that the antibiotics should cover it if is strep, and he started me on another medication to help the thrush. My throat started to feel better and within a couple days looked a lot better. Ever since then I have developed some sort of cough/cold. I have been blowing my nose like crazy and had this really bad sounding cough. It has not been too fun. I think it is finally going away though. I don't know if I caught it in the hospital or what, but I guess it could have been worse.
Anyway, the Dr discharged me I think because he didn't see any reason for me to still be there, except I was still having a lot of pain. The whole time they said my labs looked fine, x-rays and CT scan looked normal. Basically they didn't know why I was so sick.
This picture was taken right after I got the PICC line in and right before they took the IV out. Pretty cool huh? haha
The picture below is the PICC line after they removed it. Can you believe all this was inside of me? A PICC line basically is a line that goes to your heart and can stay there for weeks or months if need be. It can be used to draw blood and is very convenient. I was actually disappointed that they took it out. I asked the Dr. if we could leave it in just in case I needed it anytime soon and he said, "Well you don't plan on being back here in the next 6 months, do you?" Well of course I don't plan on it, but I didn't feel ready to go home in the first place. I should also point out that when I say "the Dr" I do not mean Dr. Smith. He admitted me and saw me the first day, but then the GI doctors on call took turns seeing me. I thought it would be a good thing, and maybe a different Dr would think of something that Dr. Smith hadn't. I was really surprised the day that Dr. Ward asked if I wanted to go home. I had still needed IV pain medicine during the night, but as I said earlier he was happy that I was eating better and said I could go.In the past Dr. Smith has admitted me even when he wasn't on call and seen me while I was in the hospital. Except if it was the weekend, then the on call Dr would take over for a couple days. He explained to me that things are changing in the practice and basically he doesn't have as much say or control as he would like. He said they are trying to lesson their work load, so when a patient is admitted, they should be admitted through the emergency room or their primary care physician, and then the GI Dr on call should be consulted to see the patient. So basically if he is not on call, he does not have the power to say whether I should have been discharged or not, etc, etc. I think if he would have been on call while I was there things would have gone a little differently. He said he would have given me more fluid, for one thing. They were giving me high dose steroids and antibiotics, which usually help, so I was a little surprised I was not feeling better faster.
The night that I got home was a really rough night. Chris set his alarm to wake up and give me pain medicine every four hours on the dot. Usually I was wishing I could have it only after a couple hours, though. I didn't sleep much and I felt so miserable. As I said before, I didn't feel lots better than when I went into the hospital so I was really frustrated. I called Dr. Smith again that morning and talked to him. Again he wasn't really in a place where he could do much because he was not on call. He said he could have me get some fluids as an outpatient or I could go to the ER and the on call GI Dr could choose to admit me or not. I chose to go to the ER because I was in so much pain. We ended up being there for about four hours. They basically told me that all my labs and everything looked normal, and that we could control the pain from home. I was pretty frustrated and I felt like the ER doctors felt like I was just drug-seeking. They did give me stuff for the pain which helped, so I guess I was ok with going home. Just frustrated that I didn't feel better than I did. So we went home once again and spent the rest of the day watching a movie and basically doing nothing.
The next day I had an appointment with Dr. Smith. My mom came that day and took me to the Dr, and as I mentioned in a previous post, she helped me do some stuff for Chris' birthday. The appointment went really well and I felt tons better afterwards. Dr. Smith spent at least an hour talking to my mom and I. He went through all my labs and tests that I had had, and what they meant. I really appreciated that because in the hospital we were always just told that everything looked "normal." He said that it looked like I was really dehydrated while I was in the hospital, and it actually looked a lot worse in the ER the day after I got home. They really only gave me fluid the first day or two in the hospital, and gave me a little bit in the ER. He said if it had been him, he would have been "loading me up" and that fluid would probably help me get some of my strength back. I have been extremely weak since I got home, hence the title of this post. All the muscles in my legs have wasted away and there is nothing there! Anyway, he said my liver function labs were a little elevated, which probably represented a little malnutrition in my case. He talked about the sigmoidoscopy he had done a couple weeks earlier and drew a picture and showed me all the places he found inflammation and ulcers. He said it looked worse than the biopsies showed, but he always takes what he physically sees and what biopsies show both into consideration. He said it doesn't look bad enough to cause all the pain I've been having, and that the best explanation he has is that the pain is just from the Crohn's. Even if there is not inflammation showing, that doesn't necessarily mean anything. Basically things aren't always what they seem. It's frustrating but I guess that's how it's been for me for a long time now. We also talked a lot about pain medication. I have been a little afraid of getting addicted to pain medication, so we talked a lot about that. He made me feel a lot better. He said that he is not worried about me getting off of it, and that right now I can't go without it, so basically not to worry too much about it. Once the pain gets better, we can taper off of it. He said only a small fraction (5%) of patients really get addicted to the point where they can't get off of them, and that mostly it is just a mental thing and they like how the medication makes them feel. I actually have been able to take less the last couple days too, so that's good. I think he has a lot different opinion on pain medication than lots of doctors, and he even admitted that the ER doctors probably were reluctant to give me anything because of their own bias and opinions. I had a nurse one night who was the same way. It was the last night I was there and she kept giving me the pain medication 45 minutes-1 hour late, telling me that I needed to "get off of these narcotics before I could go home," etc. It didn't matter that I had the medication ordered, she just was doing her own thing, which was very frustrating. Anyway, we also talked about the fact that they took the PICC line out. If it had been Dr. Smith he would have left it in until he knew I was doing better and wouldn't need it for anything else for awhile. It would have been really nice to have in the ER the next day when it took them several times to get an IV started again and draw blood. He said I might want to think about getting something called a Port-a-Cath. It's basically a needle that goes in your chest, just under the skin, and is there anytime you need access. Nothing hangs out, they just don't have to poke around for a vein because the needle is already there. He said he's not saying I need one, but if I am going to need fluids or something for awhile, it might help. We talked about me even going to get some fluids as an outpatient that day but decided not to because I had been poked so many times already. He said to try to drink lots of fluid over the weekend and see if I could get my strength back on my own and let him know how I'm doing. I called this morning and left a message and said that I am still pretty weak. His nurse called me back awhile ago and said some fluid might help me, so I am going in tomorrow to the outpatient IV infusion clinic to get some fluids. I think it will help a lot. Even though I have been trying really hard to drink enough, I don't think I'm getting enough to catch up. Anyway, I felt a lot better after talking to Dr. Smith, which was refreshing after feeling so frustrated the day before.
I also wanted to mention that I have been in contact with the Dr. in Salt Lake a little too. The day before I went into the hospital I called there to see if I could get an appointment soon. We had talked last time I was there about adding another medication with the shots if I didn't feel like the shots were working well enough at week 12. It was week 10 so I called to see if I could get in to see her in the next couple weeks. They said she was booked through April, but they would talk to her and get back to me. I didn't hear from them for almost a week, when I was in the hospital. When they called back they said that they wanted the report of the sigmoidoscopy that Dr. Smith had done. So I had his office fax it to the U of U, and they called back and said that Dr. Peterson (in SL) had wanted him to biopsy a certain area and test it for something called CMV (Cytomegalovirus). We have talked about it before and done blood tests, but they only indicate whether you had this infection in the past, not whether you have it right then. She had never said anything to me about testing for this, so I was kind of upset, and upset that if that's what she recommended, that she didn't make sure her note got to Dr. Smith. He never got it. We talked about it at the appointment and he thinks he can use the biopsies he did take and have them tested for CMV. Basically it's a virus that people with Crohn's and Ulcerative Colitis could be more likely to get, and is rare but would be worth checking, because it is something that could cause pain. He wanted me to try to call them again to send her note to him, so I did and was a little disappointed with the response I got. They basically said that that was her suggestion (at least I think-the lady who I talked to actually indicated that the Dr may be getting me mixed up with another patient, which may be why I never heard anything about this before). The person I talked to said she couldn't find the note and send it because I had seen the Dr at a different clinic that she doesn't work at and it was basically impossible. (Dr. Peterson sees patients at the U of U and at a clinic called the Redwood Clinic, and I've seen her at both places). I had also asked if she thought increasing the dose of the shots would help, and Dr. Smith wanted her opinion in that as well, and they basically said, "If Dr. Smith thinks that would help, she would respect that." They said if I still have problems then I can call again and come back to see her. I thought the whole thing was strange and probably a big misunderstanding. First they acted upset that Dr. Smith hadn't done what she recommended, then acted like they didn't care and he could do whatever he thought was best. So I guess he is going to try to run that test without having to do another sigmoidoscopy (pray we don't have to do ANOTHER one)! If it is positive there is a certain antibiotic they use to treat it. Maybe we will try the shots every two weeks instead of once a month. I don't know, we still need to decide.
Sorry this is going on so long, but as I always say, I write this more for myself than anything else, so I have to write it all down before I forget. I just want to take a minute and say thank you to everyone that helped us these last couple weeks. As I mentioned before, Chris did not really have any more sick days to spare. He was with me the first day and the next day because he always has Wednesdays off. He went to work Thursday and Friday and my mom came and stayed with me. My Aunt Lora went to work for my mom so my mom would still get paid. We are so thankful for my Aunt and everything she did so my mom could be there with me! Chris was with me of course over the weekend and didn't go to work Monday. My mom offered to come again, but Chris wanted to stay with me. :) On Sunday our Elder's Quorum President and someone else from the ward came and gave me a blessing. I had also received a blessing from Chris and my Uncle Blaine the first night there. Chris went to work on Tuesday and my mom came again, while my Aunt Lora worked for her again. We weren't expecting me to go home on Tuesday, so when I texted Chris and told him he was kind of surprised. My mom got there right after the Dr was there and helped pack all my stuff and took me home when it was time. She cleaned our whole house that day: did the bathrooms, vacuumed, dusted, cleaned the kitchen, etc. It was a huge help. Chris' stepmom brought us dinner that night, which was yummy and Chris ate it for lunch the rest of the week. The next day my friend Melissa from work (who also was in our ward until a month or two ago) brought us another yummy dinner, and we got another dinner from my visiting teacher. Saturday my mom was coming to Twin to pick up my sister's kids since my sister and her husband went to Las Vegas for a weekend trip they had been planning, and she brought us dinner that day-actually two dinners! She made us lasagna and chicken casserole, two of our favorites. She also made homemade rolls and brought salad. We put the chicken casserole in the freezer so we will have it when we finish the lasagna. Our family also fasted for me on Sunday and I can't say how much I appreciate everyone's love, concern, and prayers. I got lots of visitors and everyone was always calling my mom and Chris to see how I was. I got flowers from everyone at work, my Aunt Bev, and Chris' dad and stepmom. My sister bought me a way cute necklace from Vanity, which cheered me up quite a bit. :) Chris' grandparents brought me a box of chocolates that I have been working on. I have officially now eaten half of the box all by myself! (Remember Chris is not big on sweets). Anyway, as hard as times like this are, it's good to know how loved I am. It is overwhelming sometimes to think of all the people who are there for us and what great families we have. We have definitely been blessed! I have been so lucky to have Chris. He always knows what to say to make me feel better, he is so faithful and strong in the gospel, and so patient with me. He never complains about losing sleep when I am sick, he still gets up and goes to work every day, and helps so much with laundry, dishes, cleaning, and everything. Oh how I love him!

Here is one last picture of my arm after I took the bandage from the PICC line off a couple days later. It looks better than I expected. I've got some other pretty good bruises from IVs and times they poked me. Good battle wounds. :)
Well sorry for the marathon post, I had more to say than I thought! Good thing I have nothing better to do than sit here on my bed on the computer! Right now I am hoping to be able to go back to work next Monday, a week from today. I don't want to go until I'm much stronger and feel better, because I don't want to get run down again. I am also probably not going to go back full time, but haven't decided how many hours I will work yet. We will have less money, but I don't think working full time is worth the effect it has had on my health. Hopefully I will do better, which will save some money on Dr bills, and come out even in the end. So we are just trying to have faith that everything will work out! I also ran out of sick time last week, so as of right now I'm not getting paid. I'm hoping to qualify for something at work called "Employees Helping Employees," which is where people donate their extra PTO, and others who need it can apply for it. I know everything will be fine and we will get through it. Things are already starting to look better. I know that my Heavenly Father loves me and will never leave me alone!

Saturday, March 10, 2012

Birthday x 2

Well it seems like we like to celebrate everything at once at our house. After Christmas comes Valentine's Day, a week later my birthday, and 2 weeks after that is Chris' birthday. Not to mention that the anniversary of the day we met and went on our first date is February 18! (Can you believe it's been a whole year)?! I think both of our birthdays did not turn out how we planned this year, but considering everything that was going on, they were still pretty good. Around my birthday I had not been feeling very well. I had seen the Dr. again in SL and she suggested that the next time it got really bad, to have Dr. Smith (my Dr. here in Twin) do another sigmoidoscopy within a day or two to see if he could see something that was causing the problem. Well the weekend before my birthday turned out to be one of those times. I felt terrible, so Monday I called and talked to Dr. Smith and scheduled the procedure for Wednesday, which was my birthday. :( It worked best for us though because we both already had the day off. I scheduled it for 8:30 in the morning, thinking that I would be awake enough within a couple hours to still go about my day and salvage some of my birthday, but it didn't exactly turn out like that. For some reason I was much more out of it than usual. When I had the same thing done in SL in December, I woke up right after and even though I was groggy, I was alert enough to listen to the Dr and remember everything she said. I do not remember ANYTHING that happened afterwards this time. The Dr came and talked to Chris afterwards, I got dressed and we went home-none of which I remember. The procedure went well but they didn't really find out anything more than we knew. There was some ulcers and inflammation present, so he started me on prednisone again-ugh! I vaguely remember getting home and laying down in our bed. Chris asked me if I wanted to change into some pajamas and I said no because it was too much work. We didn't get home until I think around 11:30 or noon. I asked Chris why it took so long and he said it was because I wouldn't wake up! I then woke up around 1:30 for a minute and ate a bowl of cereal. Then Chris wanted me to open my present so I did. He gave me this cute Willow Tree to add to my collection! After that I was not feeling well and wanted to sleep some more so I lay down once again and was out until 3:30. Poor Chris just had to entertain himself the whole day!

Chris said every time he came to check on me I was in the exact same position, so I was sleeping pretty good. He spent time preparing for a grad school interview that he had over the phone the next day, so that was good he had time to prepare for that. After I finally decided that I could rejoin the human race we just hung out the rest of the night together. Chris made me my favorite: strawberry cheesecake! I was one happy girl. My sister stopped by and gave me a present and some homemade cinnamon rolls (they were so yummy)! We watched Back to the Future which my mom had given me for my birthday. She also gave me the movie Life as We Know It. Chris had never seen Back to the Future so I was glad he could finally watch it with me so he knows what I'm talking about when I quote it! Great movie...Anyway, even though I didn't spend it how I had planned, I had a great day. We have been saving to maybe get an iPad (we were hoping the iPad 2 would be cheaper once the new iPad came out, but it's not as low priced as we hoped) but that is supposed to be my present too. We want to have something else besides our one computer by the time Chris starts school, so we figured why not? :) Anyway, we should be getting one soon and I am super excited-and spoiled!

March 8 is Chris' birthday. I like to tease him about how old he is getting (he turned 29)! It fits right in with all the rest of the March and April birthdays in my family, his family is full during this time too. Since I had been in the hospital, I didn't have the time or energy to do something to0 extravagant, but with my mom's help I pulled together a little something. I got home from the hospital Tuesday and Chris had Wednesday off and stayed with me. My mom came and stayed with me on Thursday while Chris went to work. She took me to the Dr that morning and then we stopped at the store and got some balloons and things to make a banana cream pie (Chris' favorite). We went home and my mom made the pie and I made him a giant birthday card on my Cricut and some iPad app magnets that I saw on Pinterest. His real birthday present is some new jeans but we haven't had time to go shopping so I wanted to have something for him to open on his birthday too. He is always saying we need more magnets, so I thought this was perfect. Here is what he found when he got home:

The magnets were fun to make and I think they turned out cute. The blog I found it on ( used something called Dimensional Modge Podge, and I just used regular. I didn't want to spend money at the time, but they would look lots cooler with that on top so maybe sometime I will get some and add to them. It just would make them stand out more. Chris thought the magnets were pretty cool and he loved the banana cream pie and giant card so I would say it was a success. We watched American Idol that night (of course) and just enjoyed being with each other. I just have to say that I am lucky to have such a great husband. He is so supportive and caring and easygoing. He makes me laugh constantly and I am so thankful for him. Here is to many more wonderful birthdays together!

Recent Happenings

Well this is just a bunch of random pictures that I wanted to post. We have been keeping ourselves busy spending lots of time with family lately. The first weekend in February my nephew Taylor was baptized so we spent time in Burley then. My little brother Kyler was home from BYU-I for the weekend so that was fun to see him. These are some pictures from that weekend:

Don't ask me what we were doing...Kyler is the weird one, not me, haha!
Chris and I at the baptism
It was so fun to be there with Taylor as he was baptized!
Back in January Chris and I took a trip to Boise so Chris could meet with someone from the grad school program he applied to there. It turned out to be a little disappointing because they told him their program won't help him find a job in the area he wants, but other than that we had a good time. (More in a future post about Grad School and future plans-we haven't made any definite decisions so I don't want to go much into it yet). We left on a Monday after work and went and stayed with my brother Chad and his family that night. We had so much fun playing with my nephews. I lived with them when I did my internship, and I have to say that those little boys sure do love me. :) And Chris too. haha. We sure appreciated them letting us stay. The next morning we went to the interview and then I talked Chris into taking me to the Discovery Center there in Boise. I went there on a field trip once in 4th grade and loved it. It is a hands on science museum, and it was pretty fascinating. I'm pretty sure I have a picture of me in this same chair in 4th grade-haha! You sit in the chair and pull on the rope to pull yourself to the top. When you let go of the rope, you expect to come plunging down really fast, but you just float down really slow. Anyway, we had a lot of fun and I know I'm lucky to have a husband who would humor me with that.

We also have gone and watched Chris' little sister dance and my nieces cheer a couple of times. This is Courtney with her parents on senior night.
This is Kelsi with her parents (my sister) and my mom on Senior night. It's weird that both Chris' youngest sister and my oldest niece are both graduating!
I always enjoy watching them dance and cheer...brings back memories!

President's Day weekend we went to Pomerelle with my sister Tysi and her family, my brother Kelby and his family, and my brother Kyler. I had not been in a couple years and Chris and I had never been together. We had a lot of fun and I think I kept up pretty good! You can't tell but we are smiling. :)
The little boys hanging out in the lodge...they are all quite the little skiiers and Kade even started snowboarding this trip.
This is a video of first Kyler and then Chris going off of a jump they had set up. I don't know if the video will work, but if you can watch it it's pretty cool. It's hard to tell but you had to get up quite a bit of speed to even get to the part of the hill that I was standing on to take the video, and then the jump was even higher. We had lots of fun. Chris and I bought 2 day passes for Pomerelle for the price of one that we need to use soon too, so hopefully I can start feeling well enough to go again!

Valentine's Day

Well I know it was awhile ago, but I just wanted to post about what a great Valentine's Day we had. I have to admit that I had never really been with anyone (unless you count "going out" in Jr. High) on Valentine's Day before. My parents lots of times would get me candy or a stuffed animal on Valentine's Day, especially my mom and especially when I got older, and I always try to send my mom candy or flowers or something. So this year was a little bit different for me. :) That morning when I got out of the shower there was a gerbera daisy in a vase with a balloon tied to it waiting for me. We both then went to work for the day and about 9 or 10 am I got a phone call from the volunteers desk in the main lobby at the hospital that I had some flowers there waiting for me. So I went down to get them and this is what I found:

They were beautiful and I loved them! Especially the pink vase. I know flowers just die eventually but I love getting them. Everyone at work kept telling me that I have a keeper for a husband and of course I couldn't help but agree.
That night when Chris got home he had ANOTHER flower for me, this time a red rose. I told him "No more!" but he still had one other thing up his sleeve....
He got me these 12 in x 12 in storage containers for me to keep all my scrapbook paper and craft stuff in. I had a big long flat plastic container that I had been using, but it was getting too small and way too messy in there. I thought it was really sweet of him to think of something like this. I told him he got me way too much though.

For my present for Chris I put together this little basket with sayings that went with everything inside. For instance, the movie Taken said "You have "taken" my heart." Mt. Dew said, "I love everything you 'dew.'" I know it's a little cheesy, but I thought it was fun.
Then I also made him this candy gram. I saw it on Pinterest (of course) and altered it a little to fit more candy that he likes. Anyone who knows Chris knows that he does not eat a lot of sweets. I think he still has half of this candy left, so that's why candy could not be his only present. haha (p.s. I also have to note that I stayed pretty close to the price range that we set to spend on each other, my husband did not do as well!)
For dinner we ended up going and picking up some food and bringing it home and watching a movie. Neither of us had to work the next day so we got to stay up late and enjoy being with each other. It was such a great day and I am so lucky to have such a wonderful Valentine!

I had seen this idea on Pinterest as well, so a couple days later we had French Bread pizza with the pepporoni cut into little hearts. It was really cute and just something fun. :)
Hope everyone else had a great Valentine's Day as well!

Friday, March 9, 2012

Feeling Crafty

Well I realize it has been far too long since I have posted anything...We have been very busy. But now I have so many blog posts in my head it's a little overwhelming to think about getting it all done. Here's to me never getting that far behind again!-haha. Well first I just have say that I have been sucked in by Pinterest, and what perfect timing now that I have my own Cricut Cutter. I can craft till my heart's content. I love it. I have found lots of fun things to make on Pinterest, and I am always looking for an excuse to make a cute card. Here are just some pics of things I have made:

Birthday card for my nephew Porter...they will probably all get similar looking cards this year, I love this cartridge that I used! haha

I made this for a little boy in Chris' Primary class who is moving.
Thank You card I made for my visiting teacher awhile ago when I was sick and she brought us dinner.
Card I made for a little girl in my primary class (who is sister to the boy in Chris' class)

I made this yesterday-thanks to my husband for cutting wood and drilling the holes for me!
Here is a card I made for a girl at work who we had a little shower for.
Here is a little banner for a decoration for the shower.
Happy Birtthday card for Chris' mom
Another Happy Birthday card-I'm kind of hooked on making cards like this, but I need to come up with some other ideas too.
This a Valentine's Day wreath that I saw on pinterest here:
It was kind of a lot of work and if didn't already have a ton of the ribbon, I wouldn't have done it because I didn't want to spend a lot. I bought the wreath form at JoAnn's for $2.50 (after a 50% coupon), which I thought was a little much, but have since learned you can use those long swim noodles from the dollar store or a piece of foam tubing from Home Dopot or Lowe's for cheap so I will have to try that next time. Anyway, I thought it turned out way cute!
I have these HOME blocks that I made around Christmas time, and my husband had the idea that I should put something on the back that could be used for another holiday, so this is what I came up. Made the letters with my Cricut of couse, I love it!
Home blocks my mom's ward made in Relief Society last year and she had some kits leftover so she gave me one.
They also made these Joy blocks in my mom's Relief Society. I am going to put something on the back of these sometime as well. My sister suggested USA which I think would be fun!
We made these Christmas Countdown blocks in my ward for a Super Saturday. Mine turned out a bit wrinkly, but I am getting much better at modge podging wrinkle free!
My sister actually sent me the link to this blog with this wreath, which I copied and made. I was super fun and easy and a great place to put our Christmas cards from all the wonderful people out there who cared enough to send us one!
Well that shows a little bit of what I've been up to lately. I am also working on sewing a quilt right now-I've had the material for 2 years now. It's finally all cut out (thanks a TON to my mom), and I am excited to get sewing on it! Chris always asks me where I learned to make stuff like this, and my answer is always "from my momma!" For several years when I was growing up my mom was what was then called "Homemaking Leader" in our ward, and she put together a huge project or craft every month which I always helped her with. Sometimes she would even sit down with me and let me make whatever they were making. She taught me 4H and how to paint and sew and cook. I am so thankful for her and everything she taught me!