Tuesday, May 10, 2016

My Body is an Angry Motherf*cker

If you've read this blog for any length of time you know that 1) I have Crohn's disease; 2) I refuse to live like a sick person and 3) I push myself harder than most of the people I know who do nowthave a chronic illness. I've had six abdominal surgeries, IV infusions of medication for 14 years, and regular struggles where I just feel crummy, but I have a really active life with tons of travel, running, a busy job I love and chasing after a toddler. I don't exactly take it easy (understatement of the century).

A few years ago what should've been routine hernia surgery turned into nearly a month in the hospital with a bowel obstruction and blood clot. It was shocking. My body generally cooperates so well I don't know how to handle when it doesn't. I've had the occasional infection or Crohn's hiccup, but I generally am able to power through.

Last week I wrote a blog about faking it, but I didn't really talk about my health. If I can be candid my health pisses me off. I don't want to be sick. I don't want to struggle. And I power through because it's the only way I can deal with it emotionally. Being sick is not okay.

For the last few weeks I've really been struggling. A month ago my son brought home Norovirus, and my husband and I were both fortunate enough to contract it. If you're a healthy person it's a nasty virus, and I've had a hard time getting past it. My level of fatigue has been extraordinary, and some of the stomach issues continue to linger. 

Two weeks ago I had extreme abdominal pain on a Monday afternoon. It was a pain that made it hurt to breathe pain, and that is not the norm for me. It started while I was at work, and I went to a late meeting. By the time I was got home I was taking short breaths through gritted teeth. At the hospital you're always asked your pain level on a scale of 1-10. I have a high pain tolerance, and I was at about an eight. My husband wanted to take me to the ER, but I thought it would get better. This is one of the worst things about Crohn's: sometimes you're inextricably sick, and it runs it course. I try not to overreact. If I went to the doctor every time I didn't feel well, I'd be there a lot. I also just don't want it to be a thing. I don't want to have to tell people and explain it. Because it feels like it's always something, and I'm annoyed by it. Power. Through.

I struggled for two more days (still going to work) before calling the doctor. My doc ordered an abdominal x-ray and lab work. When I went to his office on Thursday (three days after this started) the pain was much better (I'd say 6 on a scale of 1-10). The physician's assistant looked me in the eye and said, "I honestly don't know what's causing this. Let's take some anti-spasm medicine and keep monitoring." I left frustrated because it was another doctor's appointment that was a waste of time. If I'd just powered through it would've gone away.

Last week I went to my family doctor. I've been so tired that I thought it might be anemia again. I had a great appointment where we talked a lot about adrenal fatigue. She called for more labs and recommended some over the counter supplements. The lab work required fasting, and I was having a hard time fitting it in last week. I waited until after our weekend visit to surprise my mom in West Virginia for Mother's Day.

On the drive back from WV I started having the agonizing abdominal pain again. We got home, and I was at the gritting my teeth pain level again. I didn't eat lunch or dinner and crawled into bed early. I woke up at 1:40 am to use the bathroom, and my first thought was "wow I'm in so much pain". When I got up Monday morning I felt sluggish but better. I was more uncomfortable than in pain. I walked my son to daycare, dropped my running clothes (because of course I was planning to run in the late afternoon) and computer off at work and walked around the corner around 7:45 am to the lab to finally get those labs drawn.  

The first technician poked me and couldn't get blood. I'm a super easy blood draw, so that was unusual. She brought in another nurse who poked me three times to no avail. As I was sitting in the chair I began to see stars. I told the nurse I was struggling. I had loud ringing in my ears and couldn't hear anything. I passed out and woke up to ammonia under my nose. I insisted on lying down, and the nurse (who was seven months pregnant) insisted that I be okay before I stood up. I promised that I was, and the next thing I knew I woke up on the floor in the arms of the pregnant nurse asking her if she was okay. I was shaking and sweating and honestly terrified. It was the scariest thing that's ever happened to me. She then had the other nurse call an ambulance and told me it was protocol to call 9-1-1 in this instance. I asked her to call my husband who told her he'd meet me at the ER.

Downtown Lansing is a small town, and I was terrified I'd see someone I knew as I was getting into the ambulance. Thankfully I got into the vehicle without being spotted and headed to the ER. They immediately started running tests, and my equilibrium mostly returned to normal. I was in a room in the ER for 13 hours, an absurd amount of time. I was told I might have to have surgery based on a potential partial bowel obstruction, but thankfully I am dodging the surgery bullet. 

They admitted me Monday night, and I'm here until at least Thursday. I am anemic again, and I have just settled into a Crohn's flare I can't get out of alone. I'm getting really strong steroid injections, and I'll keep the steroids going when I get home. I hate steroids, but they are better than surgery. I'm getting morphine every few hours, and I'm still really dizzy when I walk. I'm a fall risk and was told not to get out of my bed alone. So I may have done it anyway earlier and got caught by the nurse. I now have a bed alarm on so I can't get out without them knowing. Foiled.

Tomorrow I'll have some more tests, and this afternoon they took some tests to see if I have a viral infection (results pending). I'm on clear liquids only, but it turns out hot tea and chicken broth aren't the worst things ever. Everything I've been eating the last few weeks has made me sick, so I know my stomach needs this break. A few days of rest, steroids, pain meds and clear liquids is what the doctor is ordering (and maybe more things depending on tomorrow's tests).

Beautiful flowers from my mom, sister and work plus a balloon from my little dude. So loved.
Yesterday I was angry followed by despondent followed by resigned. Today I accept that I need to slow down. This is even scarier than my surgeries/blood clot from a few years ago. This was more random, and passing out like that really rattled my cage. My husband has brought my son in to see me the last two nights, and I realize I have to slow down to be there for them. I have to take it easier. Even thought it's entirely counterintuitive for me to relax more, I have to. I have to let things go.  This level of pushing just doesn't work anymore, and I have two people in my home who love me and rely on me. They are my priority, and I can't let them down.

This hospital gown is super flattering.
So here I lie at 8:50 pm on my second night in the hospital. I've been searching for perspective, and I found it on the floor of an urgent care in Downtown Lansing. It's not going to be easy for me to make these changes, but it is the only option. I still want to do the best job I can at taking care of my family, at my job, running and enjoying life. But sometimes going to bed early, running a shorter race and saying no is the smart thing to do. My body may be a total jerk, but I need to listen to it. The morphine helps.


  1. Re-read that second-to-last paragraph over and over and over again. Take it from me....slow down. (Don't do as I do NOW, do as I suggest!) You know you're in my prayers and my thoughts! XO - Robin N.

  2. It's interesting to hear you talk about pain tolerance. My mom has crohns and had her colon and rectum removed in 1974. She as always gritted her teeth, gone thru pain and avoided Dr's appt if possible because she was sick of them. Now that she is older, I think that has caught up with her. All that to say, I think you are being wise to realize you need to make adjustments - it will help your longevity! Praying for your quick recovery!!

    1. Adjusting is hard. I look at our calendar in June, and we already have lots planned. It's a hard balance to want to live a full, fun life and take care of myself. An continual struggle!

  3. You are just amazing Samantha. It is hard letting go but you can do it! So sorry you are going through this. Sending hugs and prayers your way!

  4. Good God! Well, I'm sending positive vibes and prayers your way. I hope you feel better soon!

  5. You are an amazing person and I admire your strength. All the things you think you need to be doing can wait. Your health is first. Please take care and rest.

    My daughter is in 5th grade. She lost her very best friend last month to an extreme flare up in her ulcerative colitis. One of her mothers comments to me was "I miss her every second. Everything we took for granted before is now so hard and meaningless.."

    I remember those words when I get upset or angry about wanting things to be perfect and it stops me dead in my tracks.
    You are an example of strength and at the same time an example that you don't have to be perfect...

    Take care of you.