The Summer of 2017

Here is one of the highlights of our summer, but time to get real. I've been MIA on social media for a while, as Rob and I have been facing some really challenging health trials the last 12 weeks. I don't usually share the details of our life on social media, but I am begging and pleading for prayers from my family and friends right now. 12 weeks ago I was admitted to the hospital for an infection in my colon, which has progressed to requiring 26 different IVs, now a picc line because I can't consume enough water without constant vomiting and a need for IV medications, a feeding tube into my small bowel as I cannot tolerate very much food, several ER visits, a hospital admission, abdominal surgery, a persistent fever for 12 weeks, another infection in my colon, and literally thousands of dollars for other tests, procedures and medication. We are working with many specialists but have not found a solid diagnosis. We are desperate for prayers and good vibes. Here is a glimpse into our every day life right now... be prepared it is long and isn't pretty, but the best way to document how the last 12 weeks have been. I can only hope that I can connect with someone out there who has been in our shoes, or by sharing our story, we will connect with others who can help us. 

In a recent movie I watched, the main character references that she no longer feels like a person, but rather a problem to solve or fix. I could not put it better myself. I often feel the burden of my existence when I wake up each morning and my husband has to flush my feeding tube, pushing potent, poisonous, and uncomfortable antibiotics through my feeding tube, as I listen to his heavy hearted sighs as he prepares for the burdens he has placed in front of him. He has become so weary that he doesn't even realize any more how audible his sighs are and how his burdened body shuffles around our home as he scrambles to get out the door. His eyes are blood shot as he gathers his briefcase for his internship, his change of clothes for work, and then his fully stuffed backpack to finish the day off with lab and research work on campus. He hurriedly grabs his snacks and things he can quickly shove in his mouth before he has to make it to the next meeting. I try to muster a smile and kiss, as my exhausted, pain stricken body gets up to walk him out the door. I get up for the 45th, oh wait no, 450th time to barf or pass endless diarrhea in our now all too familiar bathroom. I cry as he has left for the day and realize how much hurt and despair I face for the next 12-14 hours before he gets home. 

I desperately try to get back to sleep as I have only been asleep for maybe two or max three hours before he has leaves for the morning. My nights now consist of  throw up, diarrhea, and crying until my body gives up for the night and allows several minutes of sleep before the routine starts again. I grab my 3 heaviest blankets, heat up 2 rice bags, my heating pad, and my 40 lb best friend, and beg her to nuzzle into my sleeping space to feel some form of physical comfort. Sometimes in the morning, in fact now that I think of it, most mornings, I cry to my dog Indy ( I realize that sounds crazy, and it probably is slightly) and beg her to just stay with me so I don't feel so painfully and desperately lonely. She quietly nuzzles in, and sometimes even licks my tears away. 2 hours pass, after I've maxed out on pain killers, sleep aids, nausea meds, and everything else available on the pharmaceutical market (it seems like) and I wake up to the urge to pass massive diarrhea... again. I grab my trusty barf bowl on the way to the bathroom and quickly shove my sweatpants down and barely make it to the explosive diarrhea out of what I think Satan's butt hole must be like. Luckily I grab my trusty barf bowl to quickly collect all the bile and stomach acid I have left to muster up before I head back to my living room lair. 

The Office is on for the 20,000th time as I comfort myself with Michael Scott stupidity and try to take my mind off of the physical exhaustion and pain I feel. I think of repeatedly how worthless and pointless my existence feels at this current time. Something I have become far too familiar with in my internal dialogue. I notice the mess around me, and slowly try to pick up the mess I made the day prior. I stumble over what looks like a cancer patients pharmacy, and try to straighten things up to a decently presentable state. I rush again, for diarrhea calls, but don't grab my trusty bucket at resort to puking in the bath tub just so I have a vessel to collect my barf. I wipe my butt, for the millionth and a half time, holding back the tears as my raw bum screams with fire. I take a few deep breaths, clean the barf up in the bath tub and try to collect myself to make it into the kitchen. I notice the giant mound of dishes that need to be washed but I haven't been able to do because of the 26 different IVs I have had placed in the last 11 weeks, that don't allow my arms to get wet. I cringe as I wish to be a better wife and future mother, which I worry I will never become. I fight the internal dialogue of how worthless and pointless my existence has become. As I head back to my living space I am reminded of the empty bedroom where my husband sleeps each night. For 11 weeks we have slept in different rooms so he can rest, and I can puke my life away. The distance seems to widen as each day passes. I long for the day when I can share a bed with him again, uninterrupted by my barf, diarrhea, and loneliness. 

(Fair warning, there are several bleeped out swear words ahead, turn back now if you don't want to read)

Sh**. I didn't make it to the bathroom this time. In fact, I literally sh** myself. I feel the chunky diarrhea stream down my legs and soak my temple garments. Am I even worthy or worth it to wear these garments anymore? I seriously wonder if God even knows who I am anymore.  

I quickly strip my clothes and keep passing the brutal diarrhea of Satan's butt, and simultaneously wash out soiled garments in the bath tub. Puke evades me this time, and I feel grateful. I stare at my garments and think, is this what my life has become? Endless diarrhea at 25 years old and no end in sight? I seriously question if God even knows who I am anymore. 

I change my clothes and see if I can gain the strength to take a bath. Maybe I can sweat this fever out and feel a little less horrible for the day. I draw a bath, and strip my clothes, avoiding eye contact with my disgusting naked body in the mirror. I shutter at the thought how my naked, sickly, scarred and bruised my body looks. I get in the bath carefully, as to not soak my picc line dressing or get my hair wet, as that takes more strength than I have today. I quickly sponge off my body and use every ounce of strength I have to pull myself up out of the bath. I dry off, and sit down on the toilet to bring my heart rate down as I feel completely wiped and exhausted after just a measly bath. I head over to check my phone and notice I have missed two calls from insurance companies and medical bill collections. I take a big sigh and decide if I have the courage and emotional strength to fight those battles again. I quickly dress and take the only time of day I can to half attempt my makeup and hair so I don't look like a complete waste of space when my husband comes home to get me. I finally feel a little more presentable and less disgusting, but feel sad that I can't accept who I am. 

I take a minute to look around at the stacks of medical bills, and every other bill imaginable to quickly realize how flat broke we are. Our dreams of traveling, date nights, or any hope seem so far off, and honestly impossible. I gear up and get totally ready for yet, another doctors appointment, unsure of what to expect. Rob pulls up, weary and exhausted from the already brutal day he has had. He is my rock and stays positive every single day, when I know how exhausted and worried he is. I try to microwave a frozen meal for him and have it hot when he arrives home. He is lucky if I don't burn if, over salt it, or under cook it. I feel bad for what he has to eat today. A frozen chicken pot pie for the thousandth time this year, when we used to have healthy meals from scratch often. I again feel insurmountable guilt for how short I am falling. I gather my purse and insurance card, to head to another doctors appointment. We walk in heavy hearted, typically greeted by a disheartened, weary receptionist who has been yelled at hundred times today before we arrive. I try to be extra kind, as I'm sure her job is frustrating. We wait.... wait..... wait..... to be called back. Finally my name is called and Rob grabs my things as I head to the scale, which will defeat me, yet again today. I stare at the number in horror and frustration as I know no number will ever be the right one. This is something I have struggled with my entire life, and now adds to the heaping pile of stress we are facing each day. We walk back to the exam room to repeat my medical saga for the last 11 weeks for the 100th time (no exaggeration). The medical assistant gathers some of the information but we are prepared to repeat everything once again when the doctor comes in. I do not say this harshly, it's just the way the system works. The MA's are over worked and the story has to be continually repeated to ever be heard. We fight and advocate for the things we need, and depending on the day, feel validated or completely dismissed. Often times, sadly it is the latter. We book a follow up, usually in several weeks, and even fight to get in then, and feel discouraged and burdened as we head to our car. We walk to the car in silence as we try to process what the appointment meant. Rob turns the ignition and I stare out the window trying to process the appointment and find any glimmer of hope that I can. We pull up to a stop light and I notice the man in the car next to us, take several takes, staring incredulously at my face at the feeding tube blaring out of my nose. I feel so completely uncomfortable in my skin, and embarrassed by my appearance as I fight back tears for the fiftieth time today. My head hangs a little lower as the all too familiar shame fills every extra ounce of my body instantly. 

We pull into the drive way, not having spoken a word to each other as we try to process how we will move forward through the next hours of the day. I walk into the house, excited to see Indy, while simultaneously staring at the treadmill that is now covered in over ten plastic bins of all sizes filled with medical supplies. It is a constant reminder of my current limitations and the freedoms I have been robbed of by my sickly body. I crave the freedom from running I felt each day, and the empowerment I gained through running. My body and mind ache to be able to do those things again. 

Rob shoves down microwaved leftovers for lunch before he heads to his next job and lists off what he has to complete by the end of the day. The list seems impossibly long and I try to offer to help, but in reality only add more items and stress to his list. I can almost see the weight visibly added to his shoulders. His shoulders drop a little lower, and the dark circles under his eyes suddenly much more prominent. I head to the bathroom to puke and pass more diarrhea and then fall asleep on the couch for a nap, and wait for him to arrive home. This routine repeats its self for what seems like years, with no end in sight.

I do not want to seem ungrateful or angry for I know others have it much worse off. I just want to be real. I want to honestly say, I envy those who are ill with a diagnosis. I would do anything to get better. I envy those on Instagram who seem to have everything together and happy marriages with smiling chunky babies. I envy the travel bloggers, the pregnancy announcements, and home owner posts that I feel are so impossibly far in our "maybe" future. I feel an overwhelming, physically present doubt, and wonder how we will ever come out of this trial alive. I pray and hope that someone that I once knew, is there to hear me. 

As I type this, Rob and I are watching our precious niece and nephews for a few days. I see their beautiful faces and wonder in their eyes of what their futures might hold. I see the beautiful home that their parents have created and worked so hard to cultivate with love. After helping each child to bed, I cry sobs in their bathroom as I feel so frustrated about our current trial. I don't think I can ever amount to this beautiful life these children grow up in, with incredible parents and a loving, dream filled environment. The Spirit fills every inch and nook  of their home to provide constant comfort and solace. My silent sobs continue as I feel so much guilt for not being able to provide this life for my husband, and that our dreams are on an infinite hold. I cry as my swollen eyes ache for relief, and beg for sleep. I cry and wonder, what will our future hold. How will we ever make it? Please Lord, help us, I plea for the millionth time. 

The most important thing is that I have Rob by my side, and he has done everything and multiple that by a million, and it still wouldn't cover all he has done during this challenging time. You are my everything Rob.