Monday, May 2, 2016

UC Update: May 2


Lets start off with a cute baby Charlotte picture- that always makes things better.
I have loved being home and being able to rock her for hours each day. No better feeling in the world.

I have officially been home from the hospital since last Wednesday. It is so nice to be home, but at the same time it is really hard because there is so much to do. It took me a few days just to find the living room floor and the kitchen counters. It is amazing how much stuff can pile up in just a few short weeks of not cleaning. Rob gets mad at me when I clean because I'm supposed to be resting, but there is no way I can rest when everything is a mess! I think we are back to a semi-normal state now though.

I feel like I get asked the same questions over and over again, (in good reason)
so I am just going to post the answers here.

1. Are the treatments working?
There is really no way to tell at this point. My doctor said my colon is so inflamed and in such bad condition that it probably looks the exact same as it did when we started this whole journey. The recovery is going to be a VERY SLOW process. I would say that overall I do feel better than when I was first diagnosed, but not by much. It is also hard to tell because now I have the pain killers to help, which I didn't have to begin with.

2. When will you know if you need surgery?
My doctor wants to try and do at least one more round of Remicade before we throw in the towel. My next treatment should be around May 18, at which point the medicine will be at its peak in my system. If things are moving in a positive direction at that time then we will try to do a fourth treatment, which will be 8 weeks later. If things are not looking better than it is time to meet with the Colo-Rectal surgeons.

3. Are you in pain?
Yes. Pretty much constant pain, but I am on two different medications to help with that. The only problem is they add to the fatigue I already have from the anemia. I basically just want to sleep all the time. Getting out of bed is literally so exhausting I have to sit down afterward. I have never felt fatigue like this in my life- I wouldn't wish it upon anyone!

I think the most frustrating part about this whole thing for me is that every day is so different. I will have one good day and be so excited and think that maybe the treatments have started working and maybe I will start to feel better, but then the next day will be really difficult and I can't do anything I need to. It is such a rollercoaster! I wish things would just even out. 

This week has been especially difficult. We are trying to adjust to being at home, and James has just been an absolute nightmare. The poor kid has not had any time at all to adjust to having a new baby sister, let alone a sick mama. He acts out all the time and throws tantrums like crazy- which in turn make me stressed and make the UC flare more. To top it off, he got sick this week with an ear infection, conjunctivitis, and an upper respiratory infection. So then he was definitely out of sorts because he felt so terrible. We ended up having to take him to the ER on Friday night (why do kids never get sick during regular business hours?!) with a fever of 103 -104. We got him on some antibiotics and he is feeling a little better each day. The problem is that conjunctivitis is so contagious, especially in a household of people with no immune systems. Poor Charlotte now has a cold and there isn't much we can do for her because she is so little. Rob is sick as well while trying to catch up on his classes, and I am starting to get it now too. The Remicade and Imuran I take are immunosuppressants so we knew it was only a matter of time before I got it. 
Can we seriously not catch a break around here?

I also developed a few new symptoms this week (I'll spare you the details...) that lead us to believe I have developed something called a fistula. Which basically means there is a hole in my colon and things are leaking into parts of my body where they shouldn't be. (Sorry, thats gross and probably TMI but this whole disease is kind of that way....) The treatment for this is a surgery to close the hole, but they have to wait until all the other inflammation goes down in order to treat it. In the mean time I'm sure you can guess what kind of discomfort both physically and mentally that is. Just one more thing to stress about. It is also causing me to get frequent UTI's, so that doesn't help either.

[Warning: this next little part is for me. I just need to vent and let it out. 
So you might want to skip over all of the negativity!]
If I could sum up the last couple of days in one word, it would be tired. I am so very, very tired. I am tired of people asking me how I feel and having to say "not well." I would love to just say "I feel great!" one day. I am tired because I am up all night in and out of the bathroom. I am tired because I am trying to take care of two kids, one of which throws endless tantrums; argues with me, kicks me, and hits me. I am tired of getting one sickness after another. I am tired of trying to have faith and be positive but really coming up empty handed every time. I am tired of stressing about Rob's school. We have invested a lot of time and money to get this far and it seems so unfair to have it all ruined at this point because my stupid body won't cooperate. I am tired of not doing anything all day. I am usually a person who is on the go- I love taking James out, running errands, playing with friends, etc. I just want a normal day. One day where I have the energy to go outside and enjoy the weather with my kiddos. Where I can eat whatever I want and not feel sick the whole time. Where I can make other people happy instead of being a burden to them. With every passing day I find it harder and harder to believe that I will ever get another day like that in my life. I just want to feel pretty one day. No more steroid face. No more bruises that people stare at. Enough energy to put makeup on and do my hair. Enough strength to paint my nails and go to the salon to have my hair cut. Enough energy to walk to the car and at least go for a ride.

Sick baby Charlotte- poor thing has to get suctioned out every ten minutes. :(

I think I am starting to realize that I will never feel "normal" again, and that scares me. I need to find ways to be happy in my new normal and accept the challenges that we have been dealt. We have been blessed in so many ways. This week our old Provo ward held a fast for us, and that meant so much to me. Fasting is so hard for me and I feel so loved that they would care enough to sacrifice their meals for us. People have told me they have put my name in at the temple, I am grateful for their thoughtfulness and the many prayers that are going up to heaven for us in that special place. Our ward has organized people to help us pack and move our stuff to our new apartment in a few weeks. Such a huge blessing because that task was looking so daunting! Our ward here has also started a sign up for people to help me with James each day so we can get him out of the house. This is single handedly the biggest help to me because I can not physically take care of him all day, let alone take him to do fun things. I have had friends who will run to the store for me and pick up things that I need at the drop of a hat. I have had friends who come and sit with me during the day for no other purpose than to help and comfort me. This means so much. Sitting at home alone all day with two kids and not being able to leave the house is rough. It is so lonely and I am so grateful to have friends who saw that need and filled it just by being a smiling face on the couch next to me. 


Horrible bruises that EVERYONE stares at. No I am not a drug addict.

I am trying to set new goals for myself. 
1. No stressing. This one is clearly the hardest, but the most important. When I start to get stressed I almost immediately start getting cramping and pain in my stomach. 
2. Try to do one normal thing each week or day.
3. Try to get some strength back by cleaning or laundry, or lifting Charlotte.
4. I have a goal to be able to hopefully go for a little walk next week with the kids outside
5. Look for things to be grateful for and list them off when I start to feel discouraged.

I feel like this post is such a ramble. And it probably is because I have fallen asleep at least 5 times while writing it. Stupid stupid pain medication. (Now you can see why I am not allowed to drive....)
But I feel a little better. If no one else reads it, at least I have been able to get some thoughts, feelings, and frustrations out. As for an update, I am not sure there was much of one to give. It is going to be a long, slow road, and I am grateful for the people who understand that and are being so patient with me through it.

Thank you to all of you for your love, support, and prayers. They mean the world to me. Please don't give up on me yet, because my faith and hope is all but lost and I am leaning on all of you right now. You guys are the glue holding me together right now. We are so blessed to have friends that have become our family and have served us in so many different ways. Everything you do is so appreciated.

Thank you for all you do, we love you!


7 comments:

  1. Thank you for keeping us updated and being willing to be vulnerable with us. I think you're absolutely right that writing like this can be helpful in venting your thoughts, feelings, and frustrations. I think it also gives people an idea of what you need, how we can help, what specifically we can be praying for on your behalf.

    I like your goals. Keep us posted on your progress through them!

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  2. I echo Jared's thoughts, too. I've been living with IBS for the past decade, and I identify with some of your feelings about worrying you'll never feel normal again and how much it hurts to tell people you're doing poorly. I admire your strength so much, and thanks for keeping us posted. Wish we were still there to help in person!

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  3. I want to acknowledge your honesty and vulnerability in sharing with us, thank you for keeping us updated, you are in our thoughts and prayers. I really liked this goal:

    "Look for things to be grateful for and list them off when I start to feel discouraged"

    I kept a gratitude journal during my first year of law school (when I was dealing with a lot of depression), usually just a sentence every night, and it helped tremendously - a lot more than I thought it would.

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  4. i am so proud of you! i wish i could just come sit and watch hgtv with you, just like how you did for me when i was struggling! sending love and prayers to you! it's really hard and scary when you feel like you'll never be normal again. just take on one day at a time.

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  5. You are so amazing! I can't believe you have had to deal with all of this but you are such a strong person, you can do it. I wish we lived closer so I could come and help you. If there is anything I can do for you let me know. I miss you and hope things begin to get better.

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  6. You are in our heart and we pray for you to have a speedy recovery ..
    You have a darling family. .we send our love
    Tim and Barbara Odland

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  7. You are in our heart and we pray for you to have a speedy recovery ..
    You have a darling family. .we send our love
    Tim and Barbara Odland

    ReplyDelete