Hurry Up and Wait: Part II

I can feel myself shutting down. Everything feels like “too much”. Watching TV, reading a book–everything but going to bed feels like “too much”. When my alarm goes off in the morning, I count down the hours until I’m allowed to sleep again.

I know I’ve worked too hard wrestling my Crohn’s disease into perspective to let it all be erased by a scary lung CT. I know it’s petulant to wonder what I’ve done to deserve such bad luck. And I know I have no right to complain when others are suffering much worse.

I was able to find a pulmonologist who would see me before the end of November. She said that although she couldn’t “rule out cancer”, it was unlikely. Her concern, she explained, was that I was suffering from an atypical infection that invades the lungs of immunosuppressed patients like me. Not Tuberculosis but like Tuberculosis.

She explained that immunosuppressed patients don’t necessarily develop fevers but do experience night sweats and fatigue. I suffer from both, but don’t know if I’m waking up soaked due to Crohn’s or because my lungs are all blurry with white, flowing patches that have no name.

On October 1, I had a follow-up appointment with my gastroenterologist. He’s very nice and funny, but I couldn’t unfreeze my face. This has happened to me before, leading one inflammatory bowel disease surgeon to write in my medical record that I had a “flat affect” (and every time I read that, I still want to punch his face).

I remember the day that prompted this new surgeon to write that I had a “severe reduction in emotional expressiveness”. It was my first appointment with him to discuss a third small bowel resection that I really didn’t want to have. Instead of introducing himself, he forced me to explain my entire history to a resident, letting me believe that this resident was my surgeon. After the resident left, the real surgeon entered the room and forced me to explain my entire history to him again. I was under the impression that this appointment was to schedule the surgery, but he decided to order a series of meaningless tests before operating, costing my family an additional five thousand dollars.

I was told that this man was my only hope to make my third surgery a success and the thought was so angering that I couldn’t breathe. I knew I had to go through with it for my kids–to make their mom “less sick”. I appeared emotionless only because I was trying hard–so hard–not to cry.

I knew that my current GI didn’t deserve to not see my feelings and would worry if I didn’t tell him what I was thinking. So when he mentioned a fourth small bowel resection to correct narrowing that’s giving me daily symptoms, I told him that I felt trapped and overwhelmed. I started to cry as I explained that I couldn’t face another surgery now that I’ve gone back to work and my lungs were rebelling. He agreed immediately and said that he would always support me and would be there to see me through these new challenges no matter what.

The next day I had my bronchoscopy–adding another scope to my name. I woke up coughing violently and didn’t get to see my pulmonologist to ask the million questions I’d stored up for that moment. She told my husband that my airways were clear–which is good news–but that parts of both lungs appear to be infected. She’d “washed my lungs“, injecting saline and suctioning it back out to collect samples to culture. I wouldn’t get to ask her any questions but would once again, be forced to wait.

And here I am, waiting. Wondering. Hoping. Wishing. I’m still dealing with my Crohn’s disease and putting the challenges of “living sick” in its proper place. I’m not ready for another rocky, twisting, and unknown journey.

I’m not ready to add another disease to my name.

[Read "Hurry Up and Wait: Part I"]

22 thoughts on “Hurry Up and Wait: Part II

  1. Love you Chrissy! Let’s hope that the fact that you are waiting is a good sign. Maybe if it were really really bad (not that this isn’t) that they would call you immediately. I have been thinking of you!

  2. I have the same night sweats and fatigue, add to that memory loss, just wondering asi too have been on the immunosuppressant drugs, what made you get your lungs checked? Lots of coughing??? I don’t cough.

    I am trying to get the energy to get started for the day it 11:30. I had a rough day yesterday and even though I should be able to rest I feel guilty. Kids activities will start after school and I need to push forward. I get where you are!!!

    • Hi Diane! They saw a nodule at the base of one of my lungs when I had an abdominal CT scan for a Crohn’s flare at the ER. I didn’t have my lungs checked and didn’t have any symptoms. I also had/have night sweats and fatigue for Crohn’s. I hope that’s helpful (but know it probably isn’t). ~ Christina

  3. Not sure if this is a repeat post, had to log in and I think I lost my writing :(

    I so relate to you Christina!!

    I have night sweats and fatigue too as well as memory loss( seeing a neurologist for testing. ). Anyway, what made you get your lungs checked?? Coughing?? I have been on All immunosuppressants but my lungs feel fine….

  4. Oh, Christina..1st off, I am so sorry you are going thru this. It’s hard to just take in your blog, when it’s so very RELATABLE! From the symptoms, to the emotions (depression to rage,) I feel them all when I read your work. I, personally, have been living with a “gran ulomatous lesion” in my R lung, and have for many years. It hasn’t grown, which is good..but now, having had colon cancer, it seems like that, “one more thing,” that can be TOO Much. As for the mood..how can one NOT understand, but do you let yourself, give yourself permission to hate all this? That has nothing to do with how you ultimately deal, and I don’t know you, but you strike me as someone who does not allow anything but perfect..you remind me of me, going back to nursing 6 weeks after a very complicated, 4week hospital stay ostomy placement..”but I HAVE to..” I don’t do the ppl pleasing (or nursing, lol,) any more ! I am barely on Twitter, expect for my fashion blogging..I have about 2 girls with Crohn’s, young, who my heart breaks for. I had no support of anyone young or older in my teens, pre social media. Other than that, I get follows, frought with spam or silence. Why? Don’t know. Life’s too short to analyze that..but I do want to stay in touch with you! Please..send me emails my personal email address about your blog, and if you have time, just WRITE to me. You have a lot on your plate, but also a dear spirit and a writing gift that helps many. That helps me! All the best to you, Christina! <3 Christina B

  5. Thinking of you as well💟Christina B.

    Taking the shower and doing a few little things has helped me today before the rush of the day with my kids.

  6. Hey Christina. Just a quick one to say that I have been sending happy/healing thoughts your way and have tied a ribbon (for a speedy recovery) to the wishing tree at Samye Ling Monastery. Every little helps – right? I agree that waiting totally sucks. The lack of information allows your brain to come up with all sorts of worst case scenarios. It’s not right, but there you have it. Personally I agree with Sara R and am going with the “no news is good news” option. Will keep sending those positive/healthy thoughts your way :-)

    PS: My best wishes to Pepper the cat too!

  7. Christina, sorry doesn’t begin to express how I feel. And with a new haircut too! Any new thing is too much. And it seems to be neverending. You are in my thoughts. Waiting to hear from you.

  8. My dear, sweet friend…how my heart aches for you! I can’t even begin to explain my anger at the universe for doing this to you! All I can say is that I’m so, so sorry you are dealing with this. You have an army of people online who love you, will be praying for you (or whatever it is they do), and virtually holding your hand through this…and I will be the first in line. Hang in there…you are so strong and I know just how exhausting it can be to force yourself to stay so strong…but I know you can do it. **hugs**

  9. Dear Christina, so sorry that you are going through so much anguish and turmoil. I understand the need to shut down and shut everything out given your current circumstances. We are all here to keep listening to your ongoing story, to encourage you and keep you close to our hearts. Whenever I think of you I pray for you. Lots of gentle hugs.

  10. Pingback: Hurry Up and Wait: Part I | The Crohn's Diaries

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