Thursday, March 24, 2016

TPN (Again)!


I just wanted to write and talk about what's been going on the last couple of weeks. I have posted on Facebook and Instagram but I want to write it in more detail for my records. 

So I got my PICC line out on December 31, 2015. I did ok for about a month. Then I started to see my weight steadily drop. I wasn't really sure what to do. I was eating well (even though I didn't feel the greatest) but I just could not maintain my weight. Probably because every time I eat my bag is full 10 minutes later-sometimes before I've even finished my meal. I can't absorb anything. I also started to feel the classic signs of a flare up. The crampy abdominal pain, nausea, etc. I finally called my GI doctor a couple weeks ago when the scale said 84 pounds. In September when I went on Tube Feeding for a couple weeks, that is what I weighed. But it didn't work and I got down to 79 by the time we started the TPN. I didn't want it to get that low again. I explained to the nurse how I was feeling and what my weight was at. I wanted to see the doctor but she only sees patients on Mondays and Friday and those days aren't good for Chris, and I really wanted him to go. One of the main things I wanted to ask her is if she would do a scope (ileoscopy or flexible sigmoidoscopy), so I just asked the nurse to ask her if she would consider that. She has had me get 2 MRI's recently that showed the same thing (fluid which they didn't know where it was coming from) and I didn't want her to just tell me to do that again. I wanted her to actually go in and see if there was inflammation or anything else. She said yes so we scheduled it for Thursday March 17th. 

She also said that Dr. Gorman wanted me to start TPN again. I was kind of surprised and honestly that's why I put off calling. She didn't like me being on it the first time and wanted it out as soon as I got to my weight goal (which in my opinion was too soon since I always lose weight after going off of it). And I just didn't think she would do anything if I called and said I lost 6 pounds. I asked about the possibility of a port this time instead of a PICC line, for several reasons. We are going on a cruise this summer and you can't get wet at all with a PICC line, but with a port, you can de-access it and go swimming, etc. It is easier to maintain, less risk of infection, and it can stay in for years. So the next time I need TPN (and I'm kind of starting to see that there will probably always be a next time) we can start it right away and don't have to wait to get something put in, especially in this small town where it's kind of hard. I also was thinking of our adoption. We just submitted adoption papers and I don't want to to meet potential birth parents with a PICC line in my arm. They will think I'm dying or something and won't choose us. With a port, we can de-access it and they can see that I am healthy enough to raise a child. I really wanted to schedule the port at the same time as the scope. I didn't see why they couldn't coordinate-have the GI doctor do her thing, and then have the surgeon come in and do their thing. But they said they were different departments and just couldn't do that. So I scheduled the port to be done on Monday the 21st. Which meant we would have to go back to SL again. (They don't do them in Roosevelt). 

The day of the scope I felt pretty crummy. Probably partly because it wasn't till 3:30 in the afternoon and I had to go all day without eating or drinking. And partly because some days I just don't feel good. We went to SLC early that morning because Chris had an Audiology appointment at 8:40 am. Then we ran some other errands. We went and got our passports, went to Costco, Michaels, etc. The day dragged on forever and I thought 3:30 was never going to come. 

Here we are in Costco. My mom texted me and told me a Rue 21 is coming to Burley (my favorite store). So I texted her this pic since I was wearing a new shirt I had recently got from there. Then Chris was jealous and wanted to send her a pic of him too, haha!






Finally made it to hospital and changed into the lovely gown.


Chris was acting silly as we were waiting.


Since I felt so bad and was so nauseated, the doctor let me have some pain and nausea meds while we waited.


It took 3 or 4 tries to get the IV started-I can't remember for sure.


I went to sleep and woke up to the doctor saying, "You awake Jill?" I groggily said yes and she told me pretty bluntly that she found a fistula and that she was admitting me. My first thought was, "Great." Then I just thought, "Whatever." Ha! The funny thing is that Chris packed an overnight bag just in case I got admitted for some reason. I had a huge fear that she wouldn't find anything on the scope and tell me that my problems were because of that fluid and leave me to just live in pain some more. In fact I had convinced myself that that is what was going to happen and we wouldn't get any answers. I don't know why because she is really nice and really does care. So I told Chris he was crazy for packing extra clothes. But he was right. Apparently when she was only about 4 or 5 inches in, she saw what looked like a hole in my intestine. She didn't want to keep going because she was afraid there was an infection or abscess that needed immediate attention. I think she also didn't want to make things worse. They took me to recovery for like 2 minutes. Chris came back and he had already been told what was going on. I told him, "They said I have to stay." He told me it would all be ok. 

So without really having time to fully wake up, they took me to get a CT scan. This was not a pleasant experience. First of all, I had to go to the bathroom when we got to the room with the CT scan. But it wasn't bad and I figured I would be fine. Second of all, it was FREEZING in the room. I told the lady doing the scan that I was so cold. My teeth were even chattering. She got me 2 warm blankets, which turned out to not be that warm. I told her I was still freezing. She had unfolded the blankets all the way so they were really thin too, and I felt like I didn't have any blankets on me. I kept saying I was cold and she just kept saying, "We'll hurry and get this scan done." I was so irritated that she couldn't just go and get me more blankets. Then she tells me that she needs to inject contrast into my stoma. I thought, "Well that's probably better than having to drink it and wait for it to go through." My bag I wear is a two piece, which means you can just snap the bag off, and keep the wafer on without having to change the whole thing. That is what the doctor did for the scope, so I explained that to her. She then took a tube with a huge syringe connected to it and tried to thread it into my stoma. Luckily a stoma has no feeling so it didn't really bother me. But she couldn't get it in so she had to call the radiologist to come do it. Which meant I had to lay there with my bag off, in the freezing cold, while having to use the bathroom really bad. It was miserable and I was almost in tears I was SO cold. My body was so tense I could not relax it. The radiologist finally showed up and injected the contrast. He said we needed to do the scan right away, before it all just came back out my stoma. So the tech was trying to put towels everywhere to keep it from coming out. Well it was coming out. I could feel it dripping down my side. I told her we could just snap the bag back on real quick so it didn't make a mess and again she said, "We are just going to hurry and do the scan." I was so irritated AGAIN. If I could have reached the bag I would have put it back on but I couldn't reach it. So I laid there without my bag while contrast kept coming out and getting all over me, my wafer, etc. Sorry if this is TMI but it was an experience I need to write about. Somehow writing it all out also somehow makes me feel better. Anyway, they also needed to give IV contrast. If you have ever had a CT scan with IV contrast, you know that it makes you feel all warm like you need to go to the bathroom-and even makes you feel like you peed your pants. Well try having that feeling when you already feel like that. It was so miserable. Luckily the scan itself was pretty quick though-once they finally did it.After it was done, the tech said, "OK we need to get this bag back on." But then she proceeded to rush around the room cleaning up and putting things away, putting things in the garbage, etc. She kept disappearing into another room where I couldn't see her-and still left me lying on that cold hard table without my bag on! I tried to get her attention to no avail. Finally I sat myself up, and reached for my bag. She came back in the room and I told her that I had to use the restroom really bad, that I needed my bag, and that I couldn't wait any longer. So she finally helped me up and I used the restroom and got taken back to recovery where Chris was waiting. And where they happily got me more warm blankets. 

This picture is after I got up my room and was a little more awake. Luckily I grabbed my glasses too!


The hospitalist came in and talked to us. He was actually the same one that saw me when I was there in September, and he remembered me.  He said he couldn't read the CT since my anatomy is so different than most peoples. #nocolon. So we would just have to wait. He ordered my medications. I can't remember for sure but I think the surgeon came in. He said the Radiologist who read the scan called Dr. Gorman, who called him. He said the hole in my intestine was a fistula-didn't seem like it was that big. He said it looked like it had been there for awhile (though I'm not really sure how they tell). There was a pocket of fluid behind the fistula but it wasn't infected or anything. Usually fistulas lead somewhere-either out into the abdominal cavity or to another part of bowel or to another organ. But it sounded like this really didn't lead anywhere else. He said he didn't think it was anything surgical, and that Dr. Gorman would be talking to me about medication to help it heal. They let me eat dinner, but said they would make me NPO (nothing by mouth) after midnight in case they could get me in to do the port the next day. I was glad so we wound't have to come back on Monday. I shouldn't have bothered eating though because I just felt worse afterwards. The nurse gave me pain pills but I started crying because my stomach hurt so bad, so then she game me IV meds. I was finally able to relax and sleep. See picture below, haha.


I hardly slept at all that night. Don't know why. It's just hard to sleep in the hospital, and every time you do fall asleep, someone comes in and wakes you up. One person came and drew my blood at like 3 in the morning, and an hour later someone else came to draw my blood. After they had already drawn it like 3 times after I was admitted. What the heck?? I also was having MAJOR sinus and allergy issues. I asked the nurse to ask the doctor to order some claritan, sudafed, and mucinex. But I didn't get it till late the next morning. I literally couldn't breathe out of one side of my nose the whole night and most of the next day. The next morning I also asked for a nasal spray and that helped and by the next evening it was much better. I used so many tissues though. Chris actually had to go buy me some nice ones because the ones at the hospital are like sandpaper. Note to self-bring my own tissues next time. You would think I would know that after 21 times in the hospital. Oh wait-I didn't know I was going to be admitted. 

The next morning the surgeon and hospitalist came again. Same story. They told me my potassium was low and they were going to give me a bag of it. I've had IV potassium so many times and it stings so bad going in the IV. For the whole infusion. But I endured it and luckily it didn't take more than like 3 or 4 hours I think. I was super dehydrated so they were pumping in the fluids too. They told me Dr. Gorman would come that evening after she was done with Clinic. The hospitalist didn't come until about 10:30 or 11. He said he had told the department putting in the port to call him if they couldn't fit me in, but I spoke up and told him I would like to know if they were doing it or not, because I didn't want to go all day without eating, just to find out that they couldn't do it. So he called them again and came back and said they would come get me at noon. It actually turned out to be like 1:30. I was pretty nervous, not sure why. I don't get nervous for scopes because I've done them so many times I know exactly what to expect. I know that the sedation makes me nauseated and I know to tell them that beforehand so they know. But with this, I didn't know exactly how it would go. It turned out to not be a fun experience at all. I expected to go to sleep, wake up in recovery with a port in, get some pain medicine, and be fine. That is not what happened.

First of all, let me just preface this by saying that this might make me sound like a brat or like a wimp, but when you are in the hospital, little things that wouldn't bother a normal person, bother you. You are already scared and frustrated and not feeling well and hopped up on drugs. Then when things don't go as planned, as you were told, or as you expected, it's hard to keep calm. I've been know to burst into tears when I was told I could have real food and was brought a clear liquid tray instead. Your emotions are high and the drugs just escalate that. It just happens. Tears in the hospital are inevitable. So anyway, they took me down and I had to wait in the hall for about 10 minutes. The guy who was going to give me the sedation told me about it. He told me how the procedure would go, starting with them numbing my skin. He kept saying I might feel this, or that, and I was confused because I thought I would be sedated. I said, "Won't I be asleep?" and he said yes, but just in case you are aware of anything, then you will know what to expect. "We will make you comfortable though."  Back in September when I had the fluid they were worried about drained from my abdomen, I remember waking up and vaguely being aware of what they were doing. I actually watched them stick a huge needle in me and pull back tons of fluid. But I was so groggy that it didn't matter. Then I went back to sleep. So that's what I thought he meant. So these guys finally took me in and put me on this really skinny table. I laid down and they started getting me ready. They propped my knees up so I'd be more comfortable. Gave me a couple blankets. I don't even know what my head was on but it was very uncomfortable. It felt like a really thin, lopsided piece of hard memory foam or something. They used an ultrasound on my neck to find the correct vein they would insert the tube in. Then they used chloraprep or whatever to sterilize my whole chest and put drapes around the area so only the area they would be working with was showing. This also meant that the drapes were covering my face. I'm not usually claustrophobic but after laying there like that for a long time I started to feel it. I tried to turn my head to the side so it wasn't right in my face but that hurt my neck and I was already expecting to wake up with a stiff neck. (I had read a lot about ports and how people felt afterwards and was prepared to be really stiff and sore and in pain for a few days). They put oxygen on me but kind of yanked it on and pulled my hair at the same time so it all felt tangled with the oxygen tubing and was really uncomfortable. Because of the drapes, I couldn't really reach up and fix it. Time kept ticking by and the PA doing the port was taking SO LONG to come. I just had to lay there, and not to mention that I had to use the bathroom again (those dang IV fluids)! I just kept getting more and more anxious. Usually they wait till AFTER you are asleep to prep and drape you! 

So the PA finally came and peeked her head under the drape and introduced herself. She said that afterwards she would show me a port like the one she was going to put in. She also told me that if I needed anything during the procedure to let her know. I took that as-if I wake up-tell them so they can put me back to sleep. I went to sleep, but then sometime later I woke up. At first I was confused and didn't realize where I was since my face was covered in drapes. Once I figured that out, I couldn't figure out why I was awake. I started to move my arms and legs around, and moan and try to move the drapes off my face. I felt so claustrophobic. And then I felt REALLY awake. They tried to hold me down and kept saying, "What do you need Jill?" Well hello, I think it's obvious that I need something to calm me down. I said, "I need to go back to sleep!" They told me no, which I didn't understand. I thought, well maybe they are almost done, but then they kept going. It didn't hurt since they had numbed everything, but I could feel lots of pulling and tugging, which I didn't like. I think I dozed off again and woke up again and the same thing happened over again. I think that happened about 3 times. Each time I was told I couldn't have anything else. They just tried to hold me down. Since I wasn't fully in my right mind, I couldn't talk myself into calming down and just holding still. The anxiety kept rising and I just wanted out of there. Finally it was over and they took the drapes off. They put me back on my bed and then I was SO COLD. Everyone was walking around cleaning up and I felt ignored. I asked for a blanket and no one answered. I asked again and no one answered. I finally started to cry. I was saying, "PLEASE can someone get me a blanket" over and over again while I was crying. Eventually (after maybe a minute or two, but it seemed much longer) someone came with 2 blankets and asked (not very nicely) where I wanted them. They said "Around your neck?" Uh-what? I wanted them on my front but couldn't really get the words out so they kind of sat me up and put one around my back and then one in front around my upper arms/neck/head. That did help. But I remember just glaring at everyone. I was SO mad that they didn't sedate me more. Looking back now it sounds stupid, but at the time I was just mad. I wasn't in the right state to talk to myself and calm myself down. I was just bawling at this point. The PA finally came over and asked me very sternly if I was ok. I just kept crying. I thought it was pretty obvious that I was NOT ok. She asked again, and I felt like she was almost yelling at me, so I yelled back, "YES!" When what I really meant to say was "No!" At that point, she literally threw her arms in the air, rolled her eyes, and walked away and I never saw her again. I could hear them all talking and saying things like, "What should we do with her?" "She's been awake for a half an hour so she only needs to go to recovery for a half hour." What? Awake for half an hour? The whole thing was only supposed to last 45 minutes. Why did they even bother sedating me at all? Anyway-they wheeled me into recovery and the people there starting saying things like, "What is this? We weren't expecting this one. We don't have room for it. Where can we put it? I guess it can go here." HELLO people-I am a person. Not an IT. And I was fully awake and could hear every word. In fact I was still sobbing. Loudly. The guy who was in charge of sedating me was in the room and he wouldn't even look at me. You could just tell he just thought I was being so ridiculous. And I was. But it was literally out of my control. I was so upset. All they would have had to do was talk to me. Tell me they were sorry. Ask me what they could do  to make me more comfortable. But no, everyone was acting like I was the biggest inconvenience. I think sometimes people just forget that they are caring for patients. Who are people. Who are scared. Who are in pain. They let their own irritations get in the way of caring for the patient. So what if I was crying. I was in the hospital. I just had surgery. That I was awake for. Anyway, the nurse who was in charge of me asked me what was wrong and I loudly told her that I was mad they didn't sedate me more. She tried to calm me down-and frankly she was the only nice one. She tried taking my mind off of it, asking me about any vacations we had planned for this summer, etc. I asked for my husband and of course was told I could see him after I left recovery. I asked for pain medicine and was told that my nurse would have to give it me when I got back to my room. The nurse there put ice on my incisions and the pressure and weight really hurt so I told them to take it off. It wasn't extremely painful since they had numbed it, but I thought it was odd they didn't want to give me anything.  I cried and cried and cried. I told the nurse that I had never woken up before during a procedure and I didn't like it. She asked me what procedures I had had. I told her I had had a scope just the day before and I didn't wake up at all. She said, "Yeah they use a lot more sedation for those than we do. We don't need you to be that asleep, and we don't want to give you too much." Well why the heck didn't someone tell me that before? She told me several times that she was sorry it didn't go as I expected, but assured me it was over and I was fine. Finally I stopped crying. I think I was only in recovery for about 10 or 15 minutes. I think they wanted to get me out of there fast and just get me to my nurse and husband. 

When I got back to my room where the nurse and Chris were waiting, I cried some more telling them about it. I just felt totally cheated. If I had been told beforehand, that I would just getting meds to make me relax, that I would be awake for a lot of it, etc, than I think it would have been way different. I expected to go to sleep and wake up in recovery an hour later. Not wake up with drapes over my face, being held down, feeling tugging and pulling, and being told that NO, they couldn't sedate me more. I don't really get it, but I'm trying to just forget about it. I realize how ridiculous I was acting, but like I said, I could not control it. The meds can make your emotions much higher too. The procedure is actually really simple and not a big deal, so it sounds crazy when I think about how I acted. I just didn't want to be awake when I thought I would be asleep. It's kind of like when you have a dream about something that happened during your day-but the dream is totally twisted and exaggerated. You think-I must have dreamed that since this and this was on my mind, or because this and this happened. So I had all these expectations-about what I had read, what I had been told-and when it didn't happen that way it was like a bad dream where everything went wrong. You wake up and can't make sense of any of that and don't understand why any of that happened in your dream, because in real life that wouldn't happen. I 
don't know if that makes sense, but that's the best way I can explain it.

My nurse on the floor was very sweet and told Chris that they actually had a lot of complaints about that department. She said that she wanted to put in a complaint to them because it happens too often. That made me feel a little better, like my feelings were validated and I had at least somewhat of a right to be upset. But I also felt really silly. I'm still upset at the PA though. She should have totally stayed to talk to me until I felt better. She should have made sure I was ok. She should not have thrown her hands in the air and stormed off-from a patient who was obviously very traumatized. Good news is I had wonderful nurses this time!

The picture above was taken later that night. Just 2 little incisions.  The picture below shows what the port looks like. They put the port below the bottom incision-just under the skin, and then used a metal rod like thing to thread the tubing up through the top incision. I watched videos. They just force the rod from the bottom incision to the top until it poked out of the top incision. They have to separate the skin and muscle and everything so the tube can go there. They remove the rod but leave the tube there. You can feel it under my skin. Then they stick the end of the tube back in the top incision and thread it into the vein. When the port is accessed, they stick the needle right in the middle of the port-where the rubbery type middle section is. It can be poked like 2000 times. Then the meds go into the tube and then on into the vein. 

That evening they stopped the IV fluids so I just had the IV in my arm and didn't need to drag the pole around. Which meant I could put on my own clothes. Luckily I did bring a comfortable t-shirt and sweats to wear on the way home from the scope. We went on a little walk around the floor. After the numbing started to wear off, I decided I did like the ice to help numb it back up again, haha!I also had a little fever that night. They gave me a bag of antibiotics right before I went to get the port to prevent infection-so they didn't really think it was from that. But Dr. Gorman asked me if I had been sick with a cough or something and I said I felt like I had a sinus infection. I have been known to have fevers with my sinus infections so that makes sense.

Friday evening Dr. Gorman came and talked to us. She said the the CT scan also showed inflammation. Which hasn't actually been shown on any scans or surgeries I have had in quite awhile (like years). My problems have always been other things (fistulas, scar tissue, bowel obstructions, etc.).  But that explained why everything goes right through me, the crampy pain, and the weight loss. When there is inflammation, the intestine just can't absorb like it should. Anyway, so obviously the Cimzia I have been taking for 2 years is not working. We loved it because the co-pay card for it helped us meet our out of pocket at the beginning of the year-without us having to pay it, haha! But it's better to have something that works. Dr. Gorman said she actually talked to the doctors at the U of U who I used to see when we lived in Twin and they recommended Remicade (since that is known to heal fistulas), but since I had had an allergic reaction, they recommended trying Entyvio. Well I don't know how many of you remember the whole Remicade fiasco. The nurse saying I had an allergic reaction when I didn't really think I did and the doctor making me stop it. You can read about that here and here. I explained to Dr. Gorman what happened when they made me stop and she agreed that it didn't sound like an allergic reaction and that it might be worth trying Remicade again (hallelujah)! But I think she wants to try Entyvio first. She is having her nurse see if the insurance approves it, and if they do, then that is what we will try. It is an infusion like Remicade. If for some reason the insurance doesn't approve it, or we try it and it doesn't work, then we can check my blood to see if I have developed antibodies to Remicade. Because of the type of medication that Remicade is, if you start it and then stop it, you could either have an allergic reaction or it might not work the second time. But they can check your blood to see if you have the antibodies that would prevent it from working. Dr. Gorman also said since I had the port put in that day, and it was getting late, I could stay another night and go home the next day if everything was ok.

Also later that evening my brother Chad who doesn't live too far from Salt Lake came and visited. He brought his wife and 3 boys and some really pretty flowers. It was nice to talk to Chad and Fran. And those boys can always cheer me up. They are so adorable. They gave me a Superman card. :) And some really pretty flowers. 


 The flowers on the left came from some of the girls on my Usborne team. I had let them know I was in the hospital and wouldn't be able to help them for a few days and they were so sweet and sent flowers. The flowers on the right are the ones that Chad and Fran brought. 
That night I slept so good. I only woke up when the nurse would come in and then go right back to sleep. It helped that I could actually breathe, too. I wasn't in too much pain, but in the early morning my stomach did start to hurt more again. The ice helped my port site a lot though. Saturday morning the hospitalist came and said I could go home if I felt like it, and I felt like it! So we left the hospital around 11:30 and got home about 2. I slept most of the way home. Then took a long hot shower when we got home. It felt so good-since I didn't ever shower while I was there. Then I just relaxed. Chris has been taking great care of me. 


Sunday and Monday were ok. Sunday we didn't have regular church because it was the Provo City Temple Dedication. We had a choice to go at 9, noon, or 3 pm. We were going to try for 9 but I woke up and told Chris he was going to have to go without me. I went back to sleep at like 8:30 and slept clear till 11:30. I was surprised when I woke up though and Chris was still home. He said he didn't want to go without me and leave me home. Monday night I started to not feel good. I think I was just exhausted, and until I can get that medicine, I am still going to have bad days where my stomach and joints really hurt. I was in so much pain that Chris literally had to get me dressed for bed. I took some medicine and started to feel better but could not really sleep. Tuesday was so bad. I felt the worst that I had felt in a long time. I had an appointment with my primary care doctor Tuesday afternoon (just for follow up since I had been in the hospital). He is so nice. He actually saw that I had been admitted in SL and called Chris on Saturday wanting to know if I was ok. Chris missed the call, but emailed him on Sunday and he emailed back. So I was almost in tears when I saw him Tuesday-I had just felt sick all day. I told him all I had had to eat was a small bowl of cheerios at like 2:00 pm, and not much to drink because even that made me feel sick. He wrote an order for me to get IV fluids. So I called right when I left and scheduled it for the next morning. I went to the hospital IV clinic to get them. My port hadn't been accessed yet. The nurse was all ready to give me an IV but I asked her if she could use my port because IV's are so hard to start on me. She had never done it but went and got someone who had. So they accessed my port and I got the fluids in about an hour. I told her that Home Health was coming later to start TPN (it had taken a few days to get lab work done, TPN mixed, and sent-but we were finally able to start it Wednesday (yesterday)). But even though I told her that, she still took the needle out when I was done and told me to keep the gauze taped on the there the whole day. So later when the nurse came, she had to access it again. The needle the pharmacy sent was too long and hit the back of the port, so the nurse had to run back to Home Health and get a different one and poke me again. But we finally got it and now it can stay in for a week at a time. I am doing the TPN for 24/7 right now and started at just getting half of my needs. They checked my blood again today and everything looks good so starting tomorrow night I will get 75% of my needs and do that over the weekend. If everything is fine, Monday we will go up to 100%, and after we do that for awhile we can start decreasing the hours so it's not 24/7. Eventually want to get to where it's only 10 hours/day. 
This picture was Tuesday night I think. You can see all the yellowing is the bruising. The 2 tiny bumps sticking out below the bottom incision are the port.


Here is what the port looks like accessed. 

This has been quite the week-emotionally and physically. Of course things never go as planned. But I am really glad I asked my doctor to do a scope, and really glad it showed something that we can treat, and most likely will improve. And of course, Chris is amazing and always takes such good care of me. I haven't had the energy to do much more than sit on the couch, so he has had to cook and do the dishes, but he is a rock star. I really couldn't imagine anyone else taking better care of me, being more caring, or loving me more than he does.  Sorry this was so long-but there ya go!

Friday, February 5, 2016

New Adventure!

At the end of August I was invited to a party on Facebook for Usborne Books and More. I had heard of this company but hadn't ever seen any of the books up close. (Usborne has actually been around for many years, and was the 2014 Children's Publisher of the year). I was skeptical because I didn't know what could be so special about books. I also didn't see why I would like them because they sell children's books and I don't have any kids. But I was interested enough that I went. I was so impressed with the books! I thought they were genius, really. Brilliant. So fun and so unique, I could go on and on. Around this time my Etsy shop had kind of started to fizzle out. And I was getting worn out. It just took so much time and energy. And I always had a mess in my living room. I started asking questions about signing up to sell these books, which surprised myself and my husband, because I have never been a "salesman." I didn't want to become the pushy friend who everyone avoided because they thought you were going to try to sell them something. (And I hope I haven't become that). But I seriously felt like these books were an answer to my prayers. These were books that could really help a struggling reader learn (and want to learn) how to read. These were books that a child would choose over electronics, and I wanted that for my (future) kids. I talked to Chris and we thought it would be a good thing. I didn't really think I would make money at it, and I don't think Chris did either, but I really wanted something for me. That I could do and feel good about it. And I felt this was it.

It has been exciting and fun for sure. Turns out, the books sell themselves and people love to buy books for their kids. :)

I have loved that I can do it when I want, and how much I want. No stress of any minimum to meet. I can work when I'm sick, laying in bed. I even did my first party an hour after I got home from he hospital. Feeding tube and all. And I have earned a TON of free books, and a lot of half price books too. I also earned a FREE cruise for Chris and I! We will be sailing to Belize, Cozumel, and Roatan in July. :) SO excited. 

I have found some other benefits along the way. I have made some great friends. In November I promoted to Team Leader, and in January I got to go to Atlanta to a training for team leaders. I hung out with other leaders on my team and we had tons of fun. 

We have also really liked the extra income. We are going to use the money I make to save for our adoption (another reason why I feel like this was an answer to our prayers) and with Usborne we will get there much faster than we would have otherwise. 

There are also lots of different things I can try. I have been mostly doing Facebook parties, but I can also do Home parties, book fairs (I have done one so far), book drives, etc. This month I am working on a book drive-I want to raise money to get books for Foster Kids. Books that they can call their own. Many foster kids struggle with school and reading and I want to give them something they can call their own, that will give a desire and ability to learn. I'm so excited for this, especially because there is a good chance that Chris and I will become foster parents in the future.

Here are some pics of some books I have earned for free and half price. :) 











Chris built me this bookshelf out of pallets and I painted it. 

It's already full!  The girls I babysit LOVE the books-and I can see a difference in one of the girls. Her reading skills have been improving.



At the Advanced Leadership Retreat in Atlanta, one of my favorite things was meeting our CEO, Randall White. What an amazing guy!

One night, he chose to eat dinner with us! 
 Last weekend, we had a Regional Training in SL and some of my girls on my team went. (Including my beautiful cousin Danielle! So fun doing this with her!)

All the Team Leaders on our team at the Regional Training

Most of all I just love having something that I can do during the day to help me feel accomplished. I love getting these wonderful books into the hands of kids!

Health and Baby Update

I just wanted to write an update so I can remember everything later. I ended up being on TPN from the middle of September to the end of December (like the very end. Dec 31st to be exact). I slowly gained weight and when I gained back the 15 pounds that I had lost, we weened off of it over a couple weeks, then stopped it altogether. I got the PICC line out the last day of the year, so that we wouldn't be billed anything in the new year. Literally in the nick of time. We met our out of pocket at the beginning of the year and didn't really want to pay for anything TPN related. Been there, done that (and still doing that from the last time)...





I also slowly started to feel better during this time. I was able to start eating pretty normally, which I was thankful for. Since I have gotten the PICC removed, I have lost about 6-7 pounds, even though I am eating well. It is a never ending battle and I don't know what we will do if/when I lose another 7 pounds. We need to think of a better solution. We never really figured out what the problem was, except that maybe it was cysts on my ovaries that was causing pain, and then causing me to not eat well. And I just can't afford to not eat well. But as you can see, even when I eat well, I can still lose weight. I am just missing so much of my intestine, I would not be surprised if I am bordering on Short Bowel Syndrome. Super fun. 

My joints have been hurting too. Not a huge deal, but it is one more thing. My fingers are what bother me the most, and sometimes my toes and knees. Last week I got steroid shots in some of my fingers and those fingers already feel a lot better. 


The day before I got my PICC line out I also went and saw the Hematologist in SL. I had seen him previously to try to figure out a way to get my iron up. My GI doctor didn't want to mess with it, since last time I had had iron infusions I had severe allergic reactions that took me to the emergency room. The Hematologist said there was an iron infusion that was given over like 6 hours, that could work, and less than 1% of patients reacted to it. This was great news. I had thought my options were pretty slim to none, so I was super happy to hear this. So I went and had it done and didn't have any problems. Last week I went back to check my iron levels and see if they had improved. I could already tell that all my weird cravings were gone, but I was still feeling tired (which could be attributed to lots of things). On the day I saw him, I was feeling pretty crummy. My blood pressure was really low, which he was concerned about. He asked me if I would like some IV Fluids and some Zofran and I said yes! But I had a training for Usborne in an hour and a half so they pushed it really fast and got it done in about an hour. That was last Friday. On Monday I called and found out that my Ferritin levels went from 15 to 575! I couldn't believe it! The doctor said that it would probably start to decrease again in a few months and I might just need to get the infusion every few months, or every year, depending on how long it took for it to go down.  I'm going to ask my GI doctor to check my Vitamin B12 levels again next time I see her. It has been over a year and that could also be contributing to my never ending fatigue.

Here is the iron going in. Chris was a trooper and came and sat with me all day.


Why hello arm, it's nice to see you! 

In November Chris and I also met with the Fertility Doctor, who we had seen a couple times previously to do some tests. He told us that based on our test results, the only way we would ever get pregnant was with IVF. Other fertility treatments wouldn't even work, and of course, IVF is not a guarantee either. He felt like we had a good chance with IVF though. So we spent about a month and a half really trying to decide what to do. We looked at all the different plans. We prayed-a lot. We went to the temple several times. We couldn't decide if we wanted to actually try to get pregnant right now, or if we wanted to try to adopt. When we really started trying to have a baby a year and a half ago, my health was good and we felt like I could handle being pregnant. Now we weren't so sure, especially now that we live far away from any family, my mom is not in a position to help me or come stay with me, and I could end up in the hospital or on tube feeding, etc. After a LOT of thinking and praying, we decided to try adoption. We have not ruled out IVF forever, but just for right now. In the future, when my health is better again and when we live closer to family, we want to try to get pregnant. We are in the process of researching adoption agencies in Utah and deciding who to contact and everything. (If you have any tips, let us know). We have given ourselves a deadline of when we want this decision to be made. I feel good about this and am really excited!

Also, since we made this decision, I decided to start another medication for my Rheumatoid Arthritis. We have been avoiding it because you can't take it if you get pregnant. I'm excited to start taking this medicine and for my joints to start feeling better. 

On a side note, we have had so. much. snow. I'm so tired of it! It is pretty, but I hate wearing snow boots every day, and driving it, and walking in it. And it is so. cold. Which is hard on my joints. But I guess it is pretty. :) I just can't wait for Spring though!





Wednesday, December 30, 2015

A Cheerful Christmas 2015


I love Christmas time. I love to decorate my house for Christmas. I love to wrap presents and make them really pretty and all matching. I love to send Christmas cards. But this year I was having a little trouble getting into the Christmas spirit. I was realizing that another year had gone by without us growing our family, when we were sure that 2015 would be our year. I was frustrated with my health. I was sad that I was away from home and away from my mom. So one day I bought a Gingerbread house for us to decorate, hoping this would cheer me up. I quickly realized that Chris was not into it like I was and he could really care less  how it looked. So I told him he could do whatever he wanted with his side. Well you can guess who did what side. It actually was pretty entertaining to watch him. He makes me laugh every single day. Oh how I love him. :) 



Used our same decorations that we always use, but mixed it up a little. Loved that matching wrapping paper. 


This year we spent the night at Chris' dad's on Christmas Eve, then Christmas morning we went to his mom's house and opened presents there. It was really nice being with Carol and Brett, and Brett's daughter Claudi. 

Here is Chris showing off his Fitbit.


Jerry was sad because we didn't give him any presents. Poor guy.


We spent the day with family. It was fun seeing the kids come over and open their presents from Grandma.


 The boys actually did the dishes.
We also went back and saw Chris' dad for awhile on Christmas, but for some reason I didn't get any pics! Then that night we went to my mom's. Saturday afternoon we went and saw my dad with all my siblings. Here is Chris playing an intense game of Connect 4 with my nephew. He's going to be such  good dad someday. :) 


We had lots of fun playing with kids and opening presents at my mom's. It was also nice to be at my mom's and see her in her house. We continue to pray that she can still get well enough to go back home. 

Just sitting in a laundry basket eating a cheat.




My mom got all the guys aprons to BBQ with.

 My brother went in with us to get my mom a new TV for her room-so she can watch Netflix and everything. She was excited.
 Sunday we went to the Care Center and went to church with my mom there. I got to sit by these 2 cuties. 


 BEST PICTURE EVER!

My mom with some of her grandkids.



It turned out to be a great Christmas, even though our lives aren't what we had pictured they would be at this point in time. We are so thankful for all that we have, for our home and our jobs, for our wonderful family and their love. We had a great 2015 and are so blessed. 

Our New Year's wasn't anything special. We had been invited to different places for New Year's Eve, but then neither ended up working out. So we stayed home and watched TV and Chris went to bed at like 10:30 because he was so tired. I stayed up and read for about an hour before giving in and going to sleep. Be we had a good New Year's Day just being together.

My top 5 things from 2015: 
1. Spending 3 weeks in Seattle with my mom, sister-in-law and nephew while my mom did radiation the radiation was not the fun part, but being with those three was!)
2.Trip to the Tetons/Yellowstone with Chris' family
3. Trip to Disneyland/Universal Studios with Chris
4. Joining Usborne Books and More and earning a free cruise
5. No medical bills this year! (Even though we had medical problems)

We also got to do other fun things, like see my oldest niece married in the temple, go to my youngest niece's baby blessing in Wyoming, etc. We also had hard things-seeing my mom sick and how hard of a year she had, being in the hospital and dealing with a feeding tube and TPN, and finding out the only way we will have a baby of our own is with IVF-and being faced with the decision of that or adoption. But we are stronger because of these things and I know 2016 will be a great year!