“I’m fine, how are you?”

“I’m fine, how are you?”

Picture it, Sicily, 1922. (If this made you chuckle, add me on Facebook, we can hang.)

After heavily medicating myself, fasting from the night before to avoid an accident or having to stop mid-drive, grabbing a change of clothes and DripDrop in a water bottle, managing to crawl to the car, calling my bff for moral support (love you, KWS), driving to the doctor, and crawling into the office, I wipe the sweat off of my face, put on my best “I’m just as functional as you smile”, and check in for my appointment.

I’m a proud person. I am polite. I don’t want my mood/feelings/illness to negatively affect another person. However, I am a sick, and all of these facets of my existence combine in a wildly confusing way.

Nurse: “How are you doing today, Mrs. Flancbaum?

Me: “I’m fine, how are you?”

Nurse: “I’m doing well, thank you for asking! So what brings you in today?”

Me: “I’m pretty sure I died eight weeks ago and am now a ghost. I really need a refill on my pain meds and Phenergan. I’ve been seeing dark blood in my stool again. Also, I can’t bend my knees without crying and for the life of me can’t stay hydrated long enough to sustain my now-afterlife.”

If I showed how I actually felt- hysterically crying, in a wheelchair, holding a bag to throw up in- maybe it wouldn’t be so hard to be taken seriously. On the other hand, I personally am petrified of seeming dramatic (the ghost comment is a mental one, for the record) or weak in front of anyone, including my health care team.

Over the last couple months, I have taken a major turn for the worse.  I am unable to stay hydrated at all, my blood sugar (I have diabetes as well as Crohn’s) is completely out of control, pain is unbearable, a tumor (found out yesterday that it is likely benign) was seen on my liver in a scan, and no efforts by my medical team have been successful to alleviate my growing collection of serious symptoms.

The bright spot in this process is that I have a chiropractor who has dealt with his fair share of medical problems and he and I have gotten very close. We discuss at length why I show up to his office smiling (when he knows full well that I feel like I’m dying) and he has become paternally aggressive about making sure I get what I need.  He has personally called my other doctors to discuss their plans, especially pain management, and texts me almost daily checking in to make sure I am advocating for myself.

So last month, I snapped.  I was in too much pain to walk or eat, had three ER visits that showed nothing but major dehydration and pain, two caudal injections in my back, an MRI to see if the mass on my liver was going to kill me or not, extra visits to the chiropractor (for conversation) and therapist (for crying), I quit my job (that one hurt), and actually answered a phone call from my GI’s office in tears.  I told his NP about my sugar, hydration, and such while trying to not cry too much, and on 12/5 (my birthday), I had my first port placed.

After another few weeks of pulling-my-hair-out-level frustration with home health and infusion nursing (I may have lost a few years off my life on that ordeal), I’m finally on what seems to be a promising regimen of IV hydration at home. Besides getting on biologic treatment for my Crohn’s, this is the most progress I have had in my entire health history. I like to think it is a Chanukah miracle, but this was really the first time I put my pride aside and was open and honest about how serious things were getting.

After all of this, I know I’ll walk into the next appointment and still smile, be polite, and say I am fine.  They say it takes 21 days to change a habit- I think that is pretty conservative. I’m 27 years old, have been sick since I was young, and last month was the first time I came close to standing up for myself.

Hardest thing I’ve ever done? Absolutely.

Embarrassed about crying in front of a doctor? Absolutely.

Work in progress? Absolutely.

Will I get a stern talking to by my best friend and chiropractor about being better at this? Absolutely.

Worth it? Absolutely.

I envy you ladies who can sit down in front of your doctor and tell them exactly what you need. You are the type of strong woman that I want to be more like.  To the ladies in the back with me hiding behind a smile, I understand you and am with you. This is almost harder than dealing with the illness itself.

If you’ve gone through this, I’d love to hear your experiences and difficulties you’ve endured because of it.  And if you are a strong, independent mamma-jamma who is amazing at advocating for yourself, I’d love to know what has helped you become this way!

Casey Flancbaum was diagnosed with ulcerative colitis at 22, which ultimately was changed to a diagnosis of Crohn’s disease the next year. She found the GWG organization and forum during a late night search for a support group geared towards women and is so grateful for the online community that she is now a part of!

Casey holds degrees in Music Performance from the Crane School of Music and University of North Texas, and is currently an active performer and teacher in the DFW area. In her free time, Casey loves to cook, garden, and spend time with her amazing husband, Samson, and three adorable fur kids, Jackson, Roxy, and Roscoe!