Wednesday, October 5, 2011

Me.Honest.Raw.Real.

Hi. My name is Jen & I have ulcerative colitis.
I am 26 years old & I was diagnosed when I was 22.

I am not writing this for pity, for attention, or for any other reason, other than just to get it out of my gut & off of my shoulders and onto my.personal.blog. If you can relate, great. If you know of someone with colitis or crohn's & think they would benefit from reading this, share. Otherwise, don't feel obligated to read on because I'm not sure how it will spill out. It may end up being one big run on sentence/paragraph.

I look like your average woman. I am a wife, daughter, mother, & friend. I take pride in how I care for others & probably neglect to care for myself at times.
I came upon my diagnosis in graduate school while living with my sister. It was a pretty rapid thing....had stomach pain, had problems in the restroom, had some blood, went to the Emory student infirmary, got a referral to a local GI, had a colonoscopy, got a diagnosis (crohn's), started a medication. Simple right? not so much. I really had no grasp on what the diagnosis meant for my life & really thought that it was a take-this-pill-for-now-and-things-will-get-better-type-of-a-thing. Yes, you could claim I'm a healthcare provider & should know better, but keep in mind, I was working as a pediatric nurse full time, going to graduate school full time, planning my wedding, and trying to squeeze some semblence of a social life out of all of that.
Fast forward...I graduated August 8, 2008. YES! I get married August 16, 2008. YAY! "Real life starts.." and I start having vague types of symptoms all while I am following with a new local GI. I of course, long story short, end up in the hospital for 3 weeks, sick as snot. I found out that I had ulcerative colitis, not crohn's. I come home taking ~30-50 pills/day. I honestly don't remember. It was just a lot. I learn that things are much more serious than I once thought. I set up consultations with a surgeon, learn my options, and pick up with life. Things start going great, slowly but surely, meds wean down, and I am down to taking 2 GI meds. Kyle and I decide "it's time." We talk to the high risk group that were recommended to us due to my diagnosis. We talk with a genetic counselor. We weigh our options. We decide that I stay on 1 of the 2 GI meds...the more important of the two. We blink at each other & I get pregnant. Things go smoothly until I have the preterm labor from Hell. Kinsley Anne, the best & most beautiful thing that has ever happened to Kyle & I is born after a traumatic delivery for me. Any delivery involving a NICU team & a discharge where mom goes home without baby is not natural. A diagnosis follows for Kinsley Anne that is still with a lot of question marks. Is it because of my medicine? I will never know. Kinsley Anne grows, thrives. Then another hiccup. I flare again. This time with eye problems & joint problems in addition to stomach issues. We add medicine. Do another colonoscopy. No real answers. Change meds again. Serious discussions ensue about options. Medications versus long term options. So many decisions. Seriously? Is this what I'm facing? Decide to use a treatment now but that means if I ever stop it (ie, to get pregnant with my next child) I lose that as a future treatment option ever again?! Get back on immunosuppressants like I was after the hospital and risk bringing something serious home to the loves of my life? Have surgery that requires me to be out of work for God only knows how long?

I need a counselor. That is what I have come to the conclusion of. Yes, I am religious. Yes, I pray about it constantly. But, I need a professional to vent to & help me through all of this. I mean this has to be normal what I'm going through, right?! I cry anytime I think of the past 5 years of my life. So many stressors. Happy, sad, such a damn roller coaster. I love Kyle more than words can express. He is my rock, my strength, and I cannot fathom how I would have gotten through one ounce of any of this without him. When I was in the hospital, he was at home selling his truck trying to figure out how to pay our medical bills. That is not what any newlywed husband expects when he gets married. I know, I know, you have to roll with the punches. For better for worse, in sickness & in health. But you expect the "in sickness" when you're 78 and grey, not 23 and have been athletic all your life.

I am incredibly blessed to have the life I have. Believe me, I am aware of that. And I am in no danger of affecting that. I love my life. I love me. But, I just wish I could take me & put it in another physical body sometimes...often, I should say. I am sick of the constant worry, constant fear that I am going to be sick. I swear it's always something. It's an awful cycle to be in. It's either sick, recovering from being sick, or feeling like you're on the verge of being sick again. I know it doesn't help to be that way, but it's really hard not to be. If it's not the ulcerative colitis, it's the migraines. If it's not the migraines, it's anemia, or I'm on antibiotics for something a patient gave me, etc...you get the point.

Nonethless, this was definitely not a pity me post. Just a this is how I feel post & perhaps why I am so tired, draggy, & headachey lately. I need to grab my courage & discuss my emotions and feelings this month when I'm at one of my 2 doc appts so that I can find out which counselor to start with. Anyone out there know of any friends in the blog world with UC or Crohn's? It's a really tough road and can often feel lonely, so even if I just find that a few others have felt or feel similarly, perhaps that would help?! who knows.

Thanks for letting me be vulnerable. Now back to your regularly scheduled programming. :)

Until Next Time..
Love, Jen


1 comment:

Katie W. said...

I love you!! :) Just thought I'd share!