Thursday, January 29, 2015

A weekly recap

I'm a miserable failure at posting every day this month. I feel like a miserable failure at everything right now, actually. There is no way I could have fathomed what these last two weeks had in store for me. People seem to ask me everyday how I am feeling. Some days are ok and some are terrible. 

Night time has been the worst. I guess after I get the 2nd and 3rd doses of the steroid, the pain intensifies. It's been awful stomach pain. So awful that they prescribed me some pain meds. It's to the point now, that those aren't really helping. They've mainly just took the edge off. I decided last night to stop the steroid. My quality of life has been horrible. I feel worse than I did before starting them. 

Sometimes, I feel that if I told people how awful I feel, it might scare them. I have grown so used to it, but I know it's not normal. I just want to know what normal feels like again. 

My Bible and church are really helping me get through this. I'm reading the book of Job in my read-through-the-Bible-in-a-year. I just don't think it is a coincidence. I feel so afflicted, but I still know that God is good and faithful. 

I'm blogging on my Blogger app on my phone. I have no desire to go and get my laptop. There are other pictures on my camera from this week, but again, no desire to upload them right now. 
Praise Jesus for phone cameras. 

So the lowdown on the past week:
Friday evening was low key at home. 

Saturday, I took C Girl to a birthday party. Five of my church girlfriends were there and that was fun to catch up with them. I was introduced to the show Branson Famous by my friend Kacy. I watched it last night. So dramatic! And I don't even have words for it!

Sunday, we had church, a Sunday school class pizza fellowship, a care group leader meeting, and that night, our church hosted a concert by Charles Billingsley. It was wonderful!

I'm really enjoying by Tuesday morning Bible study on the book of Ephesians. I've learned a lot already!
Tuesday evening, we were double booked. We had a "meet the teacher" for C Girl's new teacher and the TREC showcase for B Boy. 

We were able to meet her teacher a little earlier than the scheduled time. She seems very sweet and had gracious things to say about C Girl. I think it's going to be a great rest of the year. 

I was so excited to go to B's showcase. He has been working so hard on his "Strike it rich" unit. They studied about money in every way possible- history (way back before money as well- bartering and trading), the way it's made, markings and their meanings, how to use it, federal districts and mints, and lots more. 

He made his OWN PowerPoint presentation- like literally created it. He's in 2nd grade people! I was impressed! He also had a checkbook he made and kept up with. He learned how to write checks, what debits and deposits are, and how to keep a register. They even created and printed their own money! 

I'm incredibly proud of both of these kiddos. They are so different, but they shine brightly in their own ways. We treated them to Braums after the showcase- they were thrilled. However, B Boy tried his first banana split and came to the realization that bananas and ice cream do not mix!

Yesterday, we had 70 degree weather. I did not feel well, but I forced myself to get them to the park. It's not often that you have weather like that in January. In fact, today it is back in the forties. 

I don't know what is about blogging that is good for my soul. It felt SO good to write all of that stuff out. 

Today, I don't have anything planned. I need to write out my menu and grocery list and do some laundry. I will feel accomplished if all of that gets done! I've still been trying to keep up with the organizing challenge. I've been able to do stuff early in the day before I start feeling crappy. I finished the kitchen and laundry room- for the most part. The kitchen never stays clean long! This week is the master bedroom. I did a little yesterday morning. 

That's a wrap for now :)




Friday, January 23, 2015

a cause dear to my heart and other ramblings

Yesterday I got out of the house and finally ran some errands. I did not feel like making a big production for dinner so we made French toast and bacon. I call that a win. We watched the Hogs when a thrilling OT game (why do we have to play down to the wire so much?!)

Today, I had no plans. I was on Facebook this morning and I had a notification that my name had been chosen and I had won a book for a page that I like getting over 500 likes. The page is for a non-profit called Feed their Tummies that was started by my friend Jenny and her husband. It focuses on helping feed children in orphanages in the Democratic Republic of Congo. They have adopted a daughter from the DRC and God has opened doors for them to be able to have this ministry and continue to help children there. 

It is tough right now in the DRC. There is political unrest and they have closed international adoption. There are around 500 children that are already legally adopted but the parents are not allowed to take the children from the country. So many people have been working tirelessly to implore our government to help get the children out of the DRC. If you would like to help, you can sign this petition asking Congress to help with this situation. You can also reach out to the White House by going here. There is also going to be a day of prayer on Sunday for the situation in the DRC and the children stuck there. You can find out more about that here.
Jenny personally came by my house to deliver the book to me. It is a book written by a man who was born in the Congo and now lives in America. About the book:
In his compelling travel narrative, Yenyi details his return trips to Congo, his subsequent charitable work, and the heartbreaking stories of the country's victims of war. While providing the voiceless a chance to speak through him, Yenyi reveals the humanitarian challenges of Congo and combines his life experiences with journal entries-creating an introspective glimpse into a world where child soldiers, rape victims, street children, and AIDS orphans are the realities of life. Trésor Yenyi has a dream-that the troubled land of his ancestors will find peace once again. It is with this great hope for the future of his homeland that Yenyi remembers Congo's forgotten.
When Jenny and her husband were in the process of creating this ministry, his name was mentioned to them since he has contacts in the Congo. Interestingly, he lives only an hour or so away from here! These contacts actually take the food to the orphanages that is bought through Feed their Tummies. It is amazing how God works! 

I received a two letters this week from my doctor. The first was to inform me that some levels in my blood work were consistent with a flare of Crohn's. The second was a go ahead for starting Humira for treatment - we were waiting on some blood work to make sure I could take it. I was telling Jenny today that it has all been so strange coming to terms with this disease. One thing I told her was that before when I was in pain, I didn't feel like it was okay that I felt bad. I always felt like people probably wouldn't believe me because I didn't have any solid reason for not feeling well. I also felt so guilty for days that I didn't feel well. Now that I have a solid reason, I feel no guilt. Everything just makes sense and I feel like it is okay to feel bad now that I know why. I know that probably sounds completely crazy.

Well, I'm just so happy that it is the weekend and that we are going to have some pretty nice weather! Hope you have a wonderful weekend!

Wednesday, January 21, 2015

Wednesday words {and Psalm 63:3}

I'm staring out my front window watching the fog burn off and trying to get motivated to do something today. This week has been a tough one so far. I began having terrible pain Sunday and it continued through yesterday. I finally got some pain medicine last night. I think maybe it is a side effect of my new medicine. Sigh. I am a side effect magnet, I think.

C Girlie had her appointment for her top mouth spacer on Monday afternoon. It will be ready in a couple of weeks. She will wear it 24/7. She actually seems excited about wearing it. Time will tell.

Tim took her with him to his basketball duty that night. She was texting me and it was so funny to text with her! We legit got in an arguement about the emoji below. She still believes that it is a Hershey's kiss. HA!

This cat never leaves my side. She is a snuggler extraordinaire. Her and I caught up on Downton Abbey Monday night.

I missed Bible study yesterday due to the pain. It meant the world to have multiple friends text and check on me yesterday. 

Tim had to be at the school board meeting last night. Blah. I was starving and so were the kids. Somehow I pushed through and made homemade chicken and dumplings. I think I've made them so much that I could make them in my sleep.
My kids eat them like CRAZY. I think they both had 3 or 4 helpings each. So yummy.

Tim and I stayed up to watch the SOTU like we do every year. There are so many things you can discuss about this, but what I can't get over is how uncomfortable Speaker Boehner always looks. Surely someone can help him with this?

This verse has been close to my heart this week.

Monday, January 19, 2015

The Weekend

I cannot begin to express how touched I am by the blog comments, Facebook comments, emails, and texts. It's incredible (a) that people read that novel of a post and (b) that people took the time to write and give advice/support.  Thank you.

It's really kind of hard to lay all of that information out there about myself. I'm so glad I will have it to look back on though.

I know I said that I was going to blog everyday this month, but I decided to give myself some grace this weekend. 

I'm glad I did because I was really tired and last night I was in an incredible amount of pain. I'm still not sure if it was just pms cramps or the beginning of an obstruction. I'm terrified all of the time of that happening again. Crohn's can make pms symptoms a lot worse, so I'm hopeful that that was all it was. I don't want to constantly talk about my Crohn's, but it is part of my life now so I will talk about it when I feel the need.

------

Friday, the kids were out of school. We had the repairman for our heater come and finish fixing it and we were just really lazy all day. We introduced the kids to the first Harry Potter movie that night and B Boy is now officially obsessed. He has been pretending to be different characters and he wants to start reading the books.

Saturday morning, I took B Boy to a birthday party for one of his friends. He had a great time and I got to sit and talk with some friends from church that I rarely get to talk to!

Tim came to pick up B and brought C Girl to me so that we could have a lady date! We ate lunch at Olive Garden and then shopped at Target. It was a lot of fun to get some QT with my girl!

Saturday evening, the ladies in my book club and I all met up for dinner and to watch Wild. Since I had just read the book, it was so fresh in my mind. The movie was good, but they left SO much out from the book!
Tim has been really sick the past week and even went to the doctor on Friday. Neither him, nor I was feeling well Sunday morning, so we stayed home from church. We had a little bit during the day where we felt well enough to pick up around the house some. The house is finally starting to feel clean and normal again after Christmas. 

I'm still trying to participate in the cleaning/organizing challenge from A bowl full of Lemons. It took the entire week, but I pretty much completed the kitchen. I will be doing the laundry room this week.

I looked over and saw this on B Boy's forehead yesterday. He drew a Harry Potter scar on himself!!!!
C Girl started back to choir and GA's last night and B Boy back to RA's. They love these programs and I am SO thankful that our church offers them! 

The kiddos are out of school today and it is going to be a beautiful day. We have an appointment this afternoon, but I'm hoping we can get outside and do something! It's going to be too pretty not to! I need to store up some vitamin D!

Thursday, January 15, 2015

an incredibly hard day, but God is faithful through it all

Today has been an extremely emotional day for me. I hope to write this post cohesively, but it might go all over the place. I want to be very honest in this post for me to have to look back on. If you don't care to read things about medical issues, this might not be the post for you. Also, this may be the longest post I've ever written.

I have been dealing with GI issues since I was 18. Things rapidly deteriorated after 2007.  2008-2011 were years that I had MULTIPLE issues and 4 surgeries for some of those issues. In 2011, I was diagnosed with irritable bowel syndrome and really believed that was what was wrong with me. 2012, 2013 and 2014 brought ER visits and a stay in the hospital for more severe abdominal pain and a partial obstruction. 

My last ER visit was in September of last year. It was once again recommended that I get a colonoscopy.  (I had attempted to do one at the very end of 2013, but was unable and then, like my typical self, just blew it off.) I was set up to have an EGD and colonoscopy in November. I once again was unable to finish the prep for the colonoscopy. My EGD was normal. You would think that that news would help me consider blowing off the colonoscopy again, but in my heart I knew I needed it done because something was wrong with me. If it was not in the upper GI, it had to be in the lower.

They finally gave me a prep that I could tolerate and I stayed up ALL night making sure I drank enough and was "cleaned out" enough. The next day, December 10th, I had my colonoscopy. I remember the day (December 15th) that the letter came in the mail with the results. I was sitting at the bar and Tim was standing near talking to one of the kids. I read it and my heart sank. I gave it to him to read. "The biopsies of the junction of your small intestine and colon agree with the diagnosis of Crohn's disease."

I truly did not believe that I would have that diagnosis. I still had the upper GI series tests on December 29th. Those tests were normal, but that did not change the diagnosis. The month has been spent in absorption and processing this news. I go from happy that I finally know, to just shocked that I have a chronic disease. I go from angry that it has taken so long to find this out, to just sad at the time I have suffered.

So, you may wonder, what exactly have I experienced over the years? I have experienced so much pain. A couple of the ER visits were because I was in so much pain that I could not stand it and they never could pinpoint a reason for the pain. I have had bouts of extreme diarrhea. I have had a fistula, an obstruction, and been unable to eat more than a toddler sometimes. I am now lactose intolerant. I have severe fatigue and I do not write that lightly- fatigue so bad that my body feels heavy from it. I also have intense irritability. I'm not me when I'm like that and I hate it.

I rarely discuss this stuff or complain about it outside my immediate family and very, very close friends. I have several people who have been astounded that I am continuously in this much pain. When you live with it for so long, you learn to push through it a lot.

Right now, I'm just so emotional because all I can think of are the past 8 years and what all has happened. I'm just so sad that I have felt so bad through a ton of it. 

So, today was the day that I was to see my GI doctor to discuss my Crohn's disease and to discuss therapy. I've learned so very much about Crohn's over the last week. There are even different types of Crohn's.

What did I learn today? I learned that my type of Crohn's disease is Ileitis. This means that my Crohn's affects my ileum which is the last part of the small intestine that connects to the large intestine. My ileum is inflamed and narrowed. The pathology report from my biopsy stated that my tissue showed Crohn's and that the inflammation showed chronicity, meaning that it had been there a long time.

Since I present with abdominal pain, joint pain, and fatigue, I am having symptoms. I'm not having diarrhea much presently. The question right now is: do I just have inflammation or do I have scar tissue? The two types of medicines that can help my case are immunosuppressants and biologics. The doctor recommends the biologics which are medications like Humira and Remicade. They are working with my insurance to get me set up with Humira. It is a ridiculously expensive medicine and I will likely take it for a long period. It is also a medication that I will have to inject into myself weekly. I about fell off of the exam table when they told me that news.

I could not leave today without having something to help me between now and the time I can get that going. He said that we could temporarily do a corticosteroid. The one he prescribed is super expensive, but has few side effects and I will take it for 3 months.

Now, I don't really want to go there, but if I do end up finding out that I indeed have scar tissue built up and not just inflammation, I will have to have a bowel resection. I can't think about it much, but it could be something that comes up. Right now, my prayer is that these medications will make me feel better. They should significantly help me feel better if it is just inflammation. They won't make me feel tons better if I have scar tissue. Basically, scar tissue buildup won't go away and it keeps my ileum blocked and I could be having partial obstructions frequently. The inflammation can cause that too, but if it's that, then the medicine will help that subside and things should be able to go through smoother and that will be what helps me to start feeling better.

The doctor mentioned that my fatigue is caused from the immune response in my body that is continuously happening. It's like your body cannot find the off switch.

Once we left the doctor my head felt so full of all of this information and I just felt so very emotional about it all. I very easily could have slid into myself and grieved over it tonight. 

I'm so glad that God had a different plan. It was no mistake that tonight was an event at our church called "Addicted to anxiety." One of my favorite teachers, Susan Goss, led the event. Her and some other ladies (some from our church) have created a ministry called Tangible Truth Ministries. 
We started off in worship and sang: 

Oh, I'm running to your arms
I'm running to your arms
The riches of your love
Will always be enough
Nothing compares to your embrace
Light of the world forever reign

AND


So I shout out Your name, from the rooftops I proclaim
That I am Yours, I am Yours
All that I am, I place into Your loving hands
And I am Yours, I am Yours

Here I am, I stand, with arms wide open
To the One, the Son, the Everlasting God, the Everlasting God

Rooftops by Jesus Culture

AND 

What a fellowship, what a joy divine,
Leaning on the everlasting arms;
What a blessedness, what a peace is mine,
Leaning on the everlasting arms.

Refrain:
Leaning, leaning, safe and secure from all alarms;
Leaning, leaning, leaning on the everlasting arms.

Oh, how sweet to walk in this pilgrim way,
Leaning on the everlasting arms;
Oh, how bright the path grows from day to day,
Leaning on the everlasting arms.

What have I to dread, what have I to fear,
Leaning on the everlasting arms?
I have blessed peace with my Lord so near,
Leaning on the everlasting arms.

Those songs are so full of trust, adoration and surrender. What could be better to hear on a day where you have learned such discouraging news? God reminded me that I can give this to Him. This disease is not on my back. No matter what happens, He will be there.

I heard Natalie Grant's song, Held on the way home tonight. I love this song. 

This is what it means to be held
How it feels, when the sacred is torn from your life
And you survive
This is what it is to be loved and to know
That the promise was that when everything fell
We'd be held

I felt so held tonight. 

Wednesday, January 14, 2015

about grocery shopping

I had coffee with a really sweet friend this morning at Kennedy Coffee. I have lived here for 4.5 years and this was my first time there! I was able to have a drink made with almond milk! I was so happy to have that option! Her and I had such a great, long talk!

I had to do grocery shopping after our coffee date. My average shopping trip is about 1 hour and 40 minutes. It exhausts me, mostly because I spend a lot of time reading labels and locating the best and healthiest products while also trying to stick to our budget. Stores do not always make it easy to find exactly what you are looking for- I stood looking at the shelf for a certain item for 2 whole minutes today until I finally spotted it. AND I was only looking at a small section! Don't get me wrong, I love grocery shopping and I get a weird satisfaction making a meal plan and shopping for our food. I want to choose the best choices for us and it really does take time and effort!

I once again did not feel great tonight. I'm just so fatigued and so full feeling in my abdomen with pain as well.  It subsided a bit as the evening wore on and I was able to make a cake and do the dishes.

I'm so, so very ready for my GI appointment tomorrow where we will discuss treatment. I'll have that update tomorrow.

Tuesday, January 13, 2015

What I did today

I hope you had a happy Tuesday!

I had Bible study this morning and then lunch with my friend, April, at Abuelo's.

I did Tuesday folders at school and got to participate in the monthly fire drill.

I made turkey noodle soup for dinner and it was delicious, as always. I'm super tired tonight.

Report cards came home today and both kids are doing great!

I think I'm going to hit the sack early tonight!