I have been thinking of writing this for awhile, but have had a hard time getting my thoughts together enough to make sense of it all. I have been kind of emotional, and so I feel like some of it is really personal. Maybe I should write it in my journal, but lately I have kind of been using this as my journal, so here goes...
So on January 26th I was finally able to see the GI doctor here in Spokane (I made the appointment clear back at the beginning of October). I thought the appointment went really well. He was really nice an listened to everything I said. I guess there are other good doctors besides Dr. Smith. :) I had been doing pretty well for the most part. Besides the fact the I was having abdominal pain all the time. haha. It was different pain than I had ever had. It was not typical Crohn's/colitis pain. It wasn't crampy, it didn't get worse after I ate, and I didn't feel sick or nauseous. It was a sharp pain and definitely got worse with movement, such as rolling over in bed, sitting up from laying down, bending over, etc. I described this to Dr. Goodell and he thinks that I have something called costochondritis. It is a benign inflammation of the costal cartilage, which connects the rib to the sternum. He pushed right along my rib cage and it was pretty sore. No one knows the cause of it. He gave me a medication to help with it. I have been slowly increasing the dose over the last 4 weeks and it has helped a ton. I don't have the pain very often anymore. The medication also slows down the GI tract, which is a good side effect for me, because sometimes I feel like everything goes right through me and I don't absorb anything. Sometimes I would be worried that I was getting dehydrated. This medication has really helped that too. I hope it means that it will be easier for me to gain wt. We also talked about lots of other things. I wasn't able to really tell him exactly what they did during my surgery in Salt Lake, except that they removed the J-Pouch. I had had the records from the U of U sent to him, but he hadn't received them yet at the time of the appointment. From my understanding, and from my mom and Chris' understanding, they removed my j-pouch, but left what is called the rectal stump, meaning the last part of the intestine. I have no need for this anymore, but the surgeon talked to my mom and Chris during the surgery and said that if they removed it then, it would be pretty rough. Because I was already dealing with so much, so they decided to leave it in. He said it was possible that later I would have problems with it and may need another surgery to have it removed. I told this to Dr. Goodell and he acted like that was crazy. Hopefully it's just because I couldn't describe it well enough, and not because they really shouldn't have left anything there! I have read about people though, who have had the same thing, and had a later surgery to have it removed. He wants to do a scope to see exactly what is going on in there. He doesn't think that the costochondritis is causing all of my problems. I have also been dealing with a couple other things that worry me, and that he said should not be happening. It is probably TMI, so I will spare you the details. :) Even though my stomach has been much better with this new medication, I still have times where I don't feel well. It's hard to explain but I can be fine one minute, and the next minute I feel awful and just completely wiped out. I think part of that is my arthritis, too. I have been really anxious and nervous and wish I knew what those records from the U of U said. I am afraid of what he will find, or what he won't find. I am afraid of having to have another surgery, and I'm afraid of just having to keep living like I am, never knowing when I'm going to feel good or not. I guess I'm afraid of the unknown.
We also discussed the debate that I may or may not actually have Crohn's disease. I have actually thought for quite awhile that I don't. The GI doctor in Salt Lake said that I did, because she did a scope and that is what she saw on the camera. But the surgeon in Salt Lake and the surgeon in Twin both said that my intestines looked healthy and that there was no sign of Crohn's. It is very likely that my problems were from my pouch, and the CMV. I really have a feeling that Dr. Goodell is not going to find any Crohn's or inflammation, and if we can figure out everything else, I will be fine. At least, I hope so.
I also saw the Rheumatologist 2 weeks ago for a follow up visit to see if the new medicine she gave me was working. It wasn't really. My hands still swell up at night and feel like they are on fire. Some mornings (like this morning) it is so bad that my knuckles feel like they pop when I move my fingers. I have not been having any problems with my knees since I started that medicine, so actually it may have helped them. At the time, we decided to stop that medicine, though. She told me to let her know if my knees do get worse and we can restart it. I am continuing the plaquenil, which I have taken for two years. I don't know if it is helping, but she said it's best to keep taking it, because if you stop it and decide it was working, it usually doesn't work anymore when you restart it. We decided that since my hands are mainly my problem, (as opposed to other people who have problems with their hands, wrists, shoulders, hips, knees, feet, etc), that she would inject steroids directly into my knuckles. I wanted to try this before I tried something that was more systemic, like a shot I would give my self or an IV I would get every few weeks. She just did it in two of my fingers. I am supposed to see if it helps and call her if I want to do that with the rest of my fingers. Those two fingers have been so sore from the shot that it's been hard to tell, but today I can tell that they are not as swollen as the rest of my fingers. I am going to call her tomorrow and go back in to do the rest.
Today I took a nap and woke up and my knees were swollen all of a sudden. I felt them and they were really warm. I had a hard time walking. I might have to start that other medicine again I guess. I wish I could get this under control. I can't sleep when my hands hurt so bad, and overall I feel tired and out of energy. I know it could be way worse, and could be affecting more than just my hands and knees, so I need to be more grateful that it is not.
I have had many days lately where I get really frustrated. I thought that after a year, I would have more answers. I didn't expect to be having problems and possibly be needing another surgery so soon. Now, I could be overreacting, maybe it's not as bad as I think. I know that I need to have faith in my Heavenly Father. I know that he knows me and has a plan for me. I have these trials for a reason. I know that He will not forsake us, He loves all of us and He loves me. I just need to remember this when I let myself worry too much. :) I am so thankful for my Savior. He knows exactly how I feel because he suffered for all of us. Not only for our sins, but He experienced every pain and emotion that we experience.
One of my favorite scriptures is Doctrine and Covenants 121:7-8.
This is when Joseph Smith is in Liberty Jail, probably one of the lowest points of his life. Even though the Lord is speaking to Joseph, I feel like he is speaking to me every time I read it:
"My son, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes."
If you made it this far, then please watch the most recent Mormon Message. It is exactly what I needed to hear. I love President Eyering.
I'm hoping that the next three weeks will bring knowledge, peace, and comfort. I am praying for faith to have the strength to handle whatever happens, and to climb this mountain.
Sunday, February 3, 2013
Last night Chris and I braved the foggy night and drove an hour and a half to Pullman to go to a WSU basketball game. For those of you who don't know, Chris is a student there, but goes to the Spokane campus. The actual school is in Pullman, so we hadn't been to any games yet. Chris was really excited to go. I think he was feeling a little deprived because he went to BYU-Idaho where they only have intramural sports. They lost, but it was still fun to go to the game!
Of course I enjoyed watching the cheerleaders!
Posted by Jill at 7:54 PM
I was going through some clothes and found some shirts that I hadn't worn in a long time. Instead of getting rid of them, I decided to try to use a couple Pinterest ideas I had seen and remake them!
For this one I had a Down East shirt with lace on the bottom, and another gray shirt that is too big so I never wear it. I cut the lace off the bottom and sewed ruffles on the front with the lace, and material from the other shirt. It also has a tie that goes around to the back, I thought it turned out all right!
I got this idea off of Pinterest as well. I had an old cami from Down East that I cut up to make the ruffles, along with some white lace. Then I sewed them onto another white Down East shirt I had. I like how it turned out!
I also learned how to make these flowers, out of the material from the gray shirt. I haven't figured out what I want to do with them yet, but I think they are so cute!
I have been wanting to make something like this for awhile, but didn't have a cursive font for my Cricut that I liked well enough. Every week the Cricut website has a free cut that is available for a week, and a couple weeks ago this font was it. I bought an old frame from Goodwill and stained it darker, and cut the vinyl out myself. I love how it turned out. It looks great above our bed!
Chris always said that if I didn't have to work, I would probably sew and make crafts all day, and he is probably right. I have really loved doing these kinds of things since I got married (and since I got a Cricut Cutter). I'm almost done with a quilt I have been working on for several months, and I am really proud of it! I feel blessed to know that I can make our house our home with this new found love. I am so thankful to my mom for teaching the basics of sewing, making crafts, cooking, etc. Because of the things she taught me I have been able to learn even more!
Posted by Jill at 7:41 PM
As I mentioned in the previous post, I was supposed to work on the Friday after Christmas. But the census was low at work, so I was able to have Friday off since there was only enough work for one person. That meant that we got to leave Thursday afternoon to go home. We didn't tell my mom that we were leaving a day early, so it was fun to surprise her. We spent the first couple days at my mom and then my dad's houses. And the last couple days at Chris' dad and then mom's houses. It was crazy trying to fit it all in, but we were glad we got to come and see everyone.
As always, I love my mom's tree, and the rest of her house at Christmas time!
The next day we were able to go night skiing with my sister Tysi and brother Kelby and their families. (One reason why we really wanted to get home)!
Um, my nieces are crazy.
We are missing Taylor and Ian because they had already gone home for the night, and poor Luke who missed all the festivities because he had RSV. We saw him for about a total of 10 minutes.
When we were at my dad's the kids went out and played in the snow. I made Chris run out and take a few pictures. :)
We were at Chris' dad's house on New Year's Eve. We introduced them to the Farming Game, so that was a good time. I think his Dad and Linda liked it.
Even Evelyn was awake at midnight!
New Year's Day we were at Chris' mom's. We also played the Farming Game with his mom and sister Courtney. I wish I had gotten pictures of us playing...but I think we have a couple more fans on our hands! I did get a pic of the boys playing though.
It was a fun trip home, and of course, not long enough. I did get to stop and see my friend Melissa and fellow dietitian and her new baby, and we stopped at the hospital on our way out of town and got to see most of my old coworkers. It was so good to get to see them-I miss them so much!
I just had to add these pics of Halli-they were all taken within about 45 seconds. She just can't sit still. So funny.
Posted by Jill at 7:16 PM
Well I had to work this year on Christmas (and the day after that, and the day after that, and I was supposed to work the day after that, but ended up getting it off). So we spent a nice Christmas Eve at home together. (I didn't have to work that day). :) Christmas Day I went to work in the morning and was there about 3 or 3 1/2 hours. We opened presents when I got home. It was a little different being by ourselves on Christmas, bur it turned out to be a nice day. We were able to have dinner with Chris' Aunt and Uncle and cousin and their family later.
Chris got me something I have wanted to do for a long time-Build A Bear! I know, it's silly, but don't judge me. I was super excited. Except I wasn't excited when he made me open all of these letters one by one and unscramble it to say Build A Bear. I had no idea what it was and was getting a little grumpy when I couldn't figure it out. With a few hints, I finally got it.
I was like a little kid in the store. It was so fun. My bear Lucy has a strawberry scent and a voicebox that I put inside her.
Chris also got what he wanted-a holster and a gun case for his gun.
For 12 days before Christmas we read some scriptures about Christ from the church website to help us remember the true reason for Christmas. We did a couple little service projects too that we enjoyed. We had a wonderful Christmas!
Posted by Jill at 6:34 PM