Hard Love

“Would you like to come to the playground for a picnic with the kids?”

It seems like a simple enough question to answer. Normally, people wouldn’t weigh the pros and cons of taking a simple trip to the playground. Normally, you wouldn’t have to calculate how far away the nearest restroom is and if you think you could make it when you inevitably have to run there. Normally, a mother could take her children to the playground without worrying she’ll literally crap her pants while she’s there.

It seems so silly, that saying no to a trip to the playground that your children have played on a thousand times would take such an emotional toll on someone. But for me, it breaks my heart. The idea that my children have to spend even one minute not doing something they’d enjoy because of this disease makes me angry and sad.

I have been begging God to give me peace about this upcoming surgery. I have been anxious and obsessive and praying non stop. I’ve been convicted about having so much anxiety as the Lord has told me not to worry for He is for me, and yet I still do. I’ve been asking Him to change my spirit and my attitude about what’s to come and it seems He has answered. I have been so sick with abdominal pain and waves of nausea that I am counting down the days in anticipation of November 7th when this ball and chain will be removed from my body and I will be free.

See, sometimes, just like us parents, God gives us hard love. He changes our perspective in ways we didn’t anticipate or necessarily want, but He changes it none the less. I am thankful. Tired, but thankful that He has found a way to change my spirit.
blessings,

erika

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Surprise!

I was just surprised with a phone call from my surgeons office. It looks like they no longer have November 14th available to them at the hospital so they need to move my surgery up a week. This will be good for a few reasons. It will bring me one week further from Thanksgiving/my husband’s birthday so that maybe I can function a little better, and one extra week to recover before Christmas time. Also, one less week to drive myself crazy thinking about this surgery.

I’ve been obsessively thinking about what’s to come and mentally preparing myself. I’ve also become obsessed with organizing my house before surgery for some odd reason. I swear I need xanax or something. I’m a hot mess. My OB who prescribed me Lexapro for anxiety and PMDD (essentially extreme PMS), told me to up my dosage as she’s concerned about my anxiety level. So today is day one of 20mg instead of 10. We will monitor that for 2 weeks and make adjustments accordingly. I’m hoping it helps.

Tomorrow I have a barium X-ray test just to ensure that I don’t have any disease in my upper GI tract. If I do, that would indicate Crohn’s disease which this surgery is not a good treatment for.  I have had this test once before about 13 years ago and it was awful. I had to drink this chalky substance (barium) which made me gag and almost vomit and then they put me on the table and flipped me around while they took the pictures. You’d think that with all the advancements in medicine they’d revamp the way they do these tests. I’ve heard they now flavor the barium but something in me is telling me that it’s going to make it worse, if that’s at all possible.

I am thankful though that my surgeon did not order an anal muscle test. I’ve heard that it’s common for surgeons to order that test before performing the JPouch surgery on a patient. Although mine did give me a rectal exam, he said he doesn’t feel the test is necessary for me. So, I’ve got that going for me.

I know you’re jealous of my glamorous life. It’s hard being this special but someone’s gotta do it.

blessings,

erika

Mrs. Brightside

Since I last wrote, I have brought myself to a better headspace. I made a decision to focus on the “pro” side of the t-chart. I have become obsessed with preparing myself both mentally and physically. I’ve been organizing my house, catching up on projects, and researching everything there is to know about the j-Pouch surgery. I’ve been watching YouTube videos of fellow j-Pouchers and their experiences and have made an extensive list of things I need to purchase for my new body.

I am still nervous of course. There are so many unknowns and what ifs, but I believe this is the right choice. The reality is, the medications I’ve been on the past 15 years are dangerous. It’s easy to forget that fact sometimes because I’ve never experienced the scarier side effects like brain infections and cancer, but the truth is the risks are still there. The pain I endure on a daily basis is also something I’m looking forward to parting with eventually, not to mention my extremely high risk of colon cancer.

I realized, I owe it to myself, my husband, and my kids to at least make an attempt to better my quality of life. It’s funny because many people in my life don’t even realize the extent of my illness. I do such a great job of hiding it that when they hear I’m having my colon removed they are absolutely shocked. If the only knew the reality that I live in every day.

So, today I’m choosing the bright side. I am putting my faith in God, in my family, and in my body.

blessings,

erika

When Life Gives You Lemons…

It’s been a while since I’ve written. The truth is, I haven’t been able to wrap my heart around the fact that I am going to have surgery this Fall and thus, have refrained from writing about it.

My husband and I met with the surgeon last Friday. He thinks that I’m a great candidate for the J-Pouch surgery and I can’t tell if I’m relieved or dreadful.  I know this is best for me in the big picture but I am terrified. Worries of how I’m going to care for my children after both surgeries and how they’re going to adjust have been consuming my every thought. I am noticing myself withdrawing and isolating which only contributes to my feelings of being lonely in this but I can’t help myself. Nobody wants to hear about my fears every second of every day… even I’m getting tired of the broken record in my mind.

Aside from the emotional part of this, my constant anxiety is making me more sick. I’ve been constantly running to the bathroom, afraid to leave my house. It’s frustrating.

In my head I know, this is best; this is going to drastically improve my overall quality of life and protect me from the dangers of my medications and colon cancer. However, in my heart I am so worried about my babies and how they will adjust to me being so under the weather for as long as I’ll need to be. I’m concerned about who’s going to do my laundry and cook my family meals, how will I vacuum the dog hair off the couch, who will make sure my boys brush their back teeth when I can’t move from the couch, who will take them to the playground when they need to get some energy out? The questions and worries are endless and all consuming.

I am trying and praying. I hope that God’s peace washes over me soon so that I can enjoy these next couple months with my kids before surgery in November.

Pray for me.

You Have 3 Choices And They All Suck

There’s this face that my doctor makes whenever she walks into the exam room having read in her notes that I am still not in remission. It’s like a mixture between absolute concern and pity. With her brows furrowed, and that look on her face, today she listed off three options.

1. Join a clinical study for an oral drug that is not yet, but close to being approved by the FDA for people with Ulcerative Colitis who failed at achieving remission with Humira. Because it’s a clinical study, everything is completely covered but I am essentially the guinea pig.

2. Be referred and admitted to a university type setting (I.e. The Cleveland Clinic) to be evaluated and hopefully something innovative would come along to try that would put me in remission.

3. Get a referral to talk to a colorectal surgeon about the J Pouch surgery.

So kids, it looks like I’ll be meeting with a surgeon that my specialist highly recommends to talk more about moving forward with having my colon removed. In the meantime, I’ll be joining the clinical study. The one good piece of news I got today was that she wants me to do a rapid taper off the prednisone so I’ll be done with that in about 3 weeks as opposed to October.

I am not sure what to think. I am emotional and anxious about the whole thing. But today my husband looked me in the eye and said, “I know you’re afraid of this surgery, but I’m afraid of the long term side effects of all these drugs you take. I don’t care if you have a bag, or a pouch or anything else, I just care that I have you.”

So, despite the fact that I am terrified, I owe it to him and my boys to do everything in my power to be here for the long haul with them.

I am scared. But I am strong.

 

blessings,

Erika