Homesick

“I want you get better, Mommy. I want you with me.”

Yesterday my babies came to visit me at the hospital. I’ve been here since Tuesday after my flare became so severe I was extremely dehydrated and writhing in pain on the floor. Before they left my little one asked me if I still had boo boos in my tummy and then blurted out the quote above. 

He’s 3. 

My heart breaks to see my children worry for their mommy and it aches for their hugs and kisses. Being separated from them these last few days has made me feel so isolated. It’s as if I’m missing an arm or a leg. 

Tomorrow I will get to go home. Tomorrow I will be with my babies. Tomorrow.

blessings,

erika

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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

Breakfast of Champs

Today I’m starting my day out with a delicious 24 oz styrofoam cup of berry flavored barium. If you’ve never tried it, I hope you never have to. It’s nice, chalky texture leaves a beautiful white film all around your mouth and tongue and has you burping up the berry flavoring for hours. 

After you chug it down, you then have to take X-rays of your stomach and small intestines every 15 minutes until it reaches your large intestine. This will help the doctor determine whether you do or do not have Crohn’s disease. This is simply a precaution before I go ahead with surgery as the surgery is not recommended for patients with Crohn’s disease. 

The next and final test I have is a blood test. My GI says it’s a little outdated but apparently it also helps determine whether a patient has Crohn’s or Colitis. 

After I “pass” these, I’m good to go for surgery in November. Lucky me! 

And I’m off for another X-ray!

blessings,

erika

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.

Think Of It As A Vacation

Saturday morning I woke up with a migraine. I’ve never had one before and it freaked me out. Due to the UC, I cannot take any over the counter pain medication but Tylenol. As you can imagine, that does little to relieve a migraine. Throughout the day it became progressively worse despite the fact that I slept most of the day. By 5pm it became so painful that I had tears streaming down my face and my skin was crawling. I begged my husband to take me to the hospital in hopes that they would give me something for the pain.

We dropped my boys off in haste to my parents and rushed to the ED. Once I had settled in and explained myself no less than 57 times and rattled off my list of medications another 43 times, they settled on a CT scan, a chest x-ray and a spinal tap for testing. See, due to the Symponi injections and Prednisone, I am at a higher risk for infection and specifically, meningitis.

Now, when you have a lumbar puncture done (I.e. spinal tap), you receive preliminary results within an hour that give you some idea of what the spinal fluid contains. But, to receive the full work up of what’s in there, you have to let the culture grow for a period of time which could be anywhere from 24-48 hours.

My preliminary results showed elevated white blood cells. Typically, for someone without my medical “complications” as the ED attending so aptly put it, that would indicate an infection of the spinal fluid. Because I am on all the medications that I’m on, the elevated white blood cells could just be from the drugs themselves. Because of the unknown and the risk of infection that my medications put me in, the doctors determined that they’d like to keep me overnight and allow the culture time to grow just to rule out meningitis. I had no other symptoms of meningitis (stiff neck, light sensitivity, unable to move limbs without pain, vomiting, dizziness, etc.) but they wanted to be extra cautious due to my medical history.

It is now Monday evening at 8:47. I am still in the hospital. The infectious disease doctor finally came in to examine me today. Upon this examination he quickly came to the conclusion that I do not look to be a patient with meningitis. I’m not sure if it’s the walking around by myself and having literally no symptoms that tipped him off but he looked at me and said, “I have seen many many patients with meningitis and you are not one of them. The cultures are still out but they will be negative.” I said, “Awesome. So I can go home right?” He told me, “Well, this is the first time I’ve seen you myself so I’d like to respect the other doctors decision to keep you until the results come back.” *insert me with a very confused look on my face*

So in short, I have now spent three nights away from my children and still have no promises of when I can go home. Tomorrow, I promise I will discharge myself if they don’t. I was on board with being cautious the first day but at this point it’s ridiculous. I haven’t had a headache since Saturday night and have had no other symptoms the entire time. This is basically just a waste of money and resources. Everyone keeps saying to me, “Think of it as a vacation!” I’m sorry, but I don’t go on vacations to places where they wake me up every two hours to check my blood pressure and poke me with needles, monitor my urine, and serve me extremely bad food, do you?

I hope you had a better weekend than me!

 

blessings,

erika

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

It’s 3am, I must be lonely

Just kidding, it’s only 1am. I keep trying to fall asleep but you know, prednisone. So now I’m on one end of the couch across from my dog, who is not supposed to be on the couch at all, watching Mean Girls and eating Twizzlers.

Tomorrow I have to take my fourth shot of the new medication. I am hoping that it magically starts kicking in after this dose but I’m not holding my breath. I read that it could take up to 12 weeks to reach its full potential and here we are.

When I started taking these shots my four year old got very nervous. He was so concerned that I was going to hurt myself and began to cry when I pulled the shot out to warm it up. I wasn’t really sure how to handle the situation so I let him watch me inject it so that he could see for himself that it wasn’t painful or scary. He then proceeded to tell everyone that he saw for the next two weeks that his mommy is sick and needs shots to make her feel better, oh but don’t worry they don’t hurt. So either all these random people in the grocery store now feel bad for me or they think I’m a drug addict. Either way, he feels better about it so I’ve got that going for me.

Speaking of my kids, they’ll be up in about 5 hours and I’ll be a zombie if I don’t try to fall asleep. Wish me luck! Goodnight, friends.

 

blessings,

erika

I Prednisone Hard

IMG_0028After yet another sleepless night due to prednisone insomnia, I am up early before my children to start pounding coffee like it’s the last life sustaining force on my dying day.

Like many other chronically ill people, I have a love/hate relationship with prednisone. On one hand, it usually works quite well to subdue a stubborn flare. On the other, I gain weight mostly in my face but everywhere else too, I can’t sleep, I never want to stop eating, and I’m much more emotional. Not to mention the risk of osteoporosis, diabetes, pressure changes in the eyes, etc. Its like those commercials for the new drug that will cure your restless leg syndrome but could also cause seizures and your arms to fall off. You wonder, “Who in the world would ever take that after hearing all that?” Well, I’m one of those crazy people I guess.

Today I tapered down to 30mg from a start of 40 four weeks ago. I am to taper by 5mg every two weeks which brings me right up to the first week in October. I am in a wedding that week, and as of now will definitely not fit into my dress so hopefully being on such a low dose at that point will allow me to lose some of this prednisone weight. Ah, the joys of being a UC mama.

Well, my coffee maker just alerted me that my magic potion is now complete. Now I will sit here clutching my coffee cup like its a life raft until my children wake up. Wish me luck!

blessings,

erika