swojnowiak

[swojnowiak]

Thief

IBD - or really any chronic illness, is a thief. A thief of joy, of time, of self confidence,

Ulcerative Colitis and now Crohn’s Disease has stolen so much from me.

It’s stolen precious time I should have been spending with people I love - missing moments I’ll never get back. Important events with my family, nights out with friends, my son’s only 4K celebration. It was just a slide and a certificate, but I won’t get that back. I wasn’t there. I couldn’t stand there and wave to him as he smiled, couldn’t give him a big hug in that moment. It seems silly, seems like such a small thing. It wasn’t a small thing to me. I was laying in another hospital bed, cursing my body and feeling like it betrayed me again. I’m always waiting for the next complication. As soon as I’m standing out in the sun, finally feeling like I’m in a good place and have things under control, I trip and fall back into a pit of despair and find myself reaching up, trying to climb and pull myself back out - exhausted, defeated, and often a different person than I was before.

IBD has also stolen my self confidence. I feel shame with every humiliating exam in the doctor’s office or the hospital room - sometimes with more than one provider present. I look in the mirror now, with scars all over my abdomen. Reminders of both everything I’ve lost and everything I’ve overcome. This last time, I left with a drain that will most likely stay long term or forever. One I’ve been dreading for years. In the past I’ve had to adjust to an ileostomy bag that was eventually reversed. I’ve spent years adjusting to a new version of myself. As soon as I think I’m finally comfortable and confident with who I am again, IBD knocks me back down and puts me in my place. It’s the shadow lurking behind me always - the cruel voice telling me “nice try.” It can feel invisible to others. I can hide most of it. There are many other illnesses where the effects can’t be hidden, and I remind myself often of that. It still hurts.

IBD steals my joy. Joy I don’t want to lose. It becomes harder to feel it when I’m constantly reminded of this never ending battle. I’m mentally and physically completely exhausted by it. My kids give me joy, my husband gives me joy, flowers give me joy. Jesus gives me joy. I remind myself that they are still here, still with me. Jesus is always with me - and that won’t ever change. This world can be so cruel. It’s broken. My faith keeps me grounded, keeps me going.

Right now I’m still in the pit. I haven’t quite climbed back out yet. I know it’ll take some time, but I’ll feel the sun again. The light will shine on new parts of myself that feel foreign. It might illuminate things I’d rather not be reminded of. Somehow I’ll find that same resolve I’ve had all these years to keep going. I’ll take this as another lesson in patience, in empathy for the patients I care for, in gratitude for the family and friends I have and for my faith. It might sound cliché, but although IBD might be winning some battles, I can assure you it won’t ever win the war.

[swojnowiak]

To the Girl with the Moon Face

As I move into this new year, I've spent more time reflecting on my life and what I've learned. The year 2020 has brought so much into focus. You don't know what you've got until it's gone - good health, human connection, community. Sometimes it's also easy to forget about - or fail to recognize - what you've gained.

I wrote this as I was reflecting on my childhood, at a time when I felt my lowest. I was ill with my Ulcerative Colitis and saw no end in sight. I was 10 years old, taking 10+ pills per day, including high doses of prednisone. I was hospitalized for a week for a severe flare. I watched helplessly as my body changed due to the effects of the prednisone. I looked in the mirror and stopped recognizing myself. I remember feeling lost and broken. I didn't know how to process the realities of a lifelong, chronic illness yet. I didn’t know how to explain this to my friends or how to face the day with strength when I was just so tired. I just wanted to be normal.

I look back on these challenges now, thankful that I’m not.

I may have lost some things, but I've been blessed beyond measure. I may have painful memories, (and the scars to prove it), but those same scars remind me of what I have overcome. They remind me that in every moment of every day, there is something to be thankful for.

To the Girl with the Moon Face

To the girl with the moon face looking in the mirror at a version of herself she’d rather hide ...like the rest, but she can’t.

I wish I could tell you - every tear you’ll shed, every bully or well meaning person you’ll face, who thinks you just gained weight as you swallow prednisone and mesalamine, as your Mom gives you enemas at night, as you prep for yet another colonoscopy, as you hate the medications making you better

...it will all be worth it.

Even now. Even after the fear, the sadness, the pain, the disappointment - even after learning you can’t really fix it.

That someday you’ll have a husband.

A man who loves you - the best and the worst of you. That you’ll have two healthy sons, who light up your life and color your days with joy.

That your struggles will teach you. They’ll show you what love is, what kindness is, what strength is. They’ll remind you of what you can control, and what you can’t.

They’ll break your heart and humble you. They’ll challenge you and change you. You’ll mourn the loss of who you once were, while learning to love who you’ve become.

They’ll crack your heart and open it wide. And let God in. Let people in. Let love in.

And when you start to doubt yourself, to question it all, to call yourself ugly - remember that every fragmented, broken piece of who you are is building you up and into the person you were always meant to be.

[swojnowiak]

A New Disease

"The pathology came back consistent with Crohn's Disease of the pouch."

It took me a moment. Sitting alone, on the phone, pumping breast milk for my second child in a small lactation room at the hospital. "Oh, ok," I replied. I felt numb.

They saw granulomas in my J pouch. Pretty definitive. Hard to come up with another differential for that. It was what it was. But it didn't feel real.

How? I thought. From the moment of my UC diagnosis at 8 until my colon came out in 2012 I've heard different variations of the words: "This girl does not have Crohn's Disease." It's why after failing all the therapies thrown at me I made the gut wrenching but necessary decision to surgically alter my life forever. I was "cured." I was better, wasn't I?

I guess not.

But it sure felt like I was - for so long. And it was so, so freeing. Freedom from pokes, immunosuppressants, tests, procedures, doctor visits. Freedom from worry. I finally had control over my health again. Even the complications along the way were manageable. I could get through it. It would all be over soon.

Not this time.

As I sat in the GI clinic today, talking about treatment options, hearing that I actually do have fistulizing disease...I still wanted to believe it wasn't happening. I found myself experiencing what I try so hard to remedy as a healthcare provider. Emotional, mental block. The information felt like an oncoming train and my mind wasn't ready to accept its arrival.

"Think of this as a new disease. You don't have Ulcerative Colitis anymore. You have Crohn's Disease," the doctor said.

He was right. This is new territory. But the pain, the sadness, the stress - it's all too familiar.

I'm starting down a new path, whether I like it or not. I'm starting Humira, an immunosuppressant, self-injected medication. And then I pray it works.

Breathe in, breathe out. You'll be ok.

[swojnowiak]

If I could live in an eternity of Autumns, I would do so. I would chase the falling all my life. . A shift in weather and a change in attitude. What falls with the leaves? “ — Haiku on Life by Tyler Knott Gregson (at Helena, Montana) https://www.instagram.com/p/CE5nLudl0T9/?igshid=sdnjp4ityvwf

[swojnowiak]

It's Ok if You're Not Always Ok

Recovery. It's both a frustrating and soothing word for me. Time slows to the pace of watching paint dry all while seeming like it flew by as soon as I reach the other side. They say you will have good days and bad days. That's certainly true. It is possible to hold both the thought that "it could always be worse," and "why did this have to happen to me?" at the same time. Sometimes, those opposing thoughts contribute to the emotional exhaustion of recovery, and in many cases, of continuing to live with a chronic illness and/or the complications of its aftermath. You begin to question whether you're a complainer - whether people are tired of you talking so negatively about your situation on your worst days. Whether you should just hold it all inside until the feelings subside. The tough part is, they never fully fade away.

There's a certain sense of grief that wells up inside when you've lost parts of who you are. I had a bad day this past weekend. It was like the dam broke loose and the stronghold I'd built around my emotions gave way to the pent up sadness and grief I'd been harboring. The flood was surrounding me and it felt hard to take a deep, cleansing breath. I cried for what I'd lost - years of my life spent on harsh medications, days spent in hospitals and recovering from major surgeries, the carefree person I always wanted to be - not the one always waiting for the next medical complication. All the while I chastised myself for having a pity party. "So many others have been through far worse! You work in Palliative Care - you've seen it! You've watched people you love suffer horrible tragedies and face unbelievable hardship. This too shall pass." But I needed a moment to cry. When I talked to Aaron about it, I tried my hardest to explain what it's like.

Ever since this began at a young age, I've poured an immense amount of energy into pushing the negative feelings down - for fear of being viewed as "too negative," or fear of missing out on the good parts of life. I've pushed them down because I was afraid of losing the strength to keep pushing forward. Sometimes, I just need to stop pushing, even if it's only for a moment. I need to lift my arms up and let the tears fall. I need to ask God "why?" and wrestle with my doubts. It's only after this that I am able to remind myself that perhaps the "why" doesn't always exist. Meaning making has both kept me going and infuriated me over the years. I come back to this Bible verse:

John 16:33

"I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”

I remind myself that trouble is inevitable. Knowing this doesn't always make it easier to deal with, but I am comforted by my faith in Jesus Christ and the knowledge of His sacrifice that has given me access to peace beyond comprehension, love without bounds, and life everlasting. When I'm not ok, I'm never alone.

My prayer for myself and all those struggling with these feelings of sadness, grief, and self-doubt is that we can take a pause sometimes, let the feelings out, and find solace in the above.

As it is often said, it is perfectly ok to not be ok.

Just know that you are never alone.

[swojnowiak]

...continued

I woke up from surgery in a daze. No ostomy bag. I remember nothing from those first few hours. Only that because of COVID-19 restrictions, Aaron could only stay for a short while before heading home for the remainder of the night. I went into surgery around midnight on Sunday and was finished around 3:30am.

Dr. Ridolfi returned later in the morning. He told me the loop turned out to be in a much different area than he thought, and it honestly was in the best spot it could be in for a resection. Nowhere near my J pouch or my uterus. It was another freak situation. Rare, of course. Somehow my small bowel had twisted itself in a band of scar tissue from a prior surgery. He asked if I wanted to see a photo of my intestines from surgery. i told him yes. That photo will haunt me the rest of my life.

"Here's what healthy bowel looks like," he said. Pink, viable.

"Here's what yours looked like in that spot." Black. Dead.

Who knows what would have happened if I'd waited any longer. If I'd had another surgeon. If he'd made another call. If hundreds of people hadn't been praying for me. If God hadn't been with me. God saved my life. Dr. Ridolfi saved my life. I know this.

When I finally was able to process this days later, the tears started. I was so tired...so sad..but so grateful to be alive. Could this happen again? So many thoughts were racing through my head. Any thought of trying for a third child was immediately ripped from my mind. We can't...I need to stay alive for my boys. We don't have all the answers. We may never know if pregnancy has played any role in these obstructions happening. I'm always at risk for more because this surgery was #7 for me since 2012. Luckily, my scar was revised and hernia fixed in the OR, with a 60% chance it'll hold long term. If not, I may face an 8th surgery. But we'll cross that bridge later.

I am so grateful for my family, my friends (especially those who at the Tiki Party took it upon themselves to completely clean everything up for us, those who visited, texted, messaged, and called me, who prayed) my surgeon and care providers, RNs, CNAs, coworkers who sent me gorgeous flowers and visited me, my kids whose photos brought smiles to my face when smiling was hard, and my husband...without Aaron I don't know what I'd do. After Jesus Christ, he is everything to me. He has stepped up and been strong when many others might crumble. He takes so much on his shoulders and loves me through the absolute worst of it all. He tells me I'm beautiful when I feel like my belly resembles the alien's from E.T., or Frankenstein, and reminds me how strong I am. I don't deserve him sometimes. I am so blessed.

Before I discharged home, Dr. Ridolfi came by with his team. "Thank you, for Saturday." The words were hard to form. He looked surprised. "Thank you for making the decision to take me to surgery when you did. I might not be here today if it weren't for that." I started to cry. He explained that he's glad he did too, and repeated that none of them would have slept well if they hadn't. He eased my mind and told me what happened to me was rare. We laughed as I said I tend to be the one who gets the rare stuff. I believe God put him in my life that night for a reason. The stars aligned as they needed to and I'm alive because of it.

When I got home and saw my babies, my heart was full again. I kissed their cheeks, gave them hugs. Memorized every bit of their sweet faces. Even though I can't pick them up for 8 weeks and that makes me sad, I am so thankful I'm ok and I'm here to be their Mama.

God is so good.

[swojnowiak]

...continued

They tried IV dilaudid next. I couldn't tell you what dose, but it worked. I finally felt some relief. I was so drowsy. Keeping my eyes open was a struggle. But thank God. Thank God I wasn't in so much pain. The Zofran didn't work for my nausea. I continued to vomit. They tried compazine. We think it worked, as the vomiting stopped.

The nurse went through next steps. The colorectal team was consulted and I'd need a CT scan. Trauma announcements kept sounding out overhead. We knew it might be a while before I'd be scanned. We had no idea it would take over 7 hours. All the while I just laid in bed, constantly shifting my position and reaching out to people I felt should know about my situation. Eventually the CT was done, but the read might take up to 2 hours. The nurse eventually came in. We asked if he'd heard about the plan, and he said they must think it's serious because they had already booked me an OR. "For tonight?" I asked, terrified. "Yes."

The colorectal surgery team arrived. My memory isn't the best, but I remember hearing "closed loop obstruction." I knew exactly what that meant. Transport was on their way to take me to PACU. They left the room, and the anger set in. "They need to hurry! Aaron I could die from this!" I felt panicked. They were moving as fast as they could, I knew that. I just hoped we had made it there fast enough.

In the PACU, they allowed Aaron in for a few minutes to hear what the surgeon had to say. Dr. Ridolfi (quite possibly the only colorectal surgeon I hadn't met yet at Froedtert) showed me my CT scan. He knew I worked as an NP, and talked in terms I completely understood. He was calm and pragmatic when considering and sharing his plan. Most important of all, he was honest, and he was kind. He explained his concern that the way the closed loop appeared, it could be dying off. I could perforate. He said none of them would sleep tonight if they didn't open me up and look. He shared he wasn't sure if it was sitting on top of my uterus in some scar tissue (from my most recent C section), or if it's in a much more serious location near my J pouch. He told me he knows how important that pouch is, and he doesn't want me to lose it and wake up with an ostomy bag. I told him about the plans I had to repair an incisional hernia in the Spring - about the very specific way it was going to be done by my other surgeon. He explained honestly that he likely couldn't use mesh or do things exactly the same way, but he would certainly try.

I barely had time to process. I just wanted to live. I wanted to see my kids again. I thought briefly about heaven and told myself God was with me. I thought about leaving my family behind. I kissed Aaron goodbye and told him I loved him, not knowing if I'd see him again. They wheeled me away.

[swojnowiak]

Not again.

Not now.

Help me.

These were the phrases swirling through my head this past Saturday, August 29th of quite possibly the strangest, most challenging year - 2020. Amidst a global pandemic, murder hornets, wildfires, injustice, unrest, an upcoming presidential election, and multiple people I love struggling with their own hardships, I was suddenly facing another one of my own. Aside from the birth of our second son, which Is enough to bathe all of the darkness in blinding, beautiful light, it's been rough.

I woke up that Saturday just like any other day, knowing we had a very small gathering planned at our house. Our annual "Tiki Party" is something we look forward to all year. This year's would be different, as we knew a large outdoor gathering simply wouldn't be possible with COVID-19 hanging around. A couple of good friends had already begun to arrive to help set up. I was in our bedroom, getting myself and the inside of the house together. I started noticing a complete lack of appetite, and stomach upset. I thought, maybe it's just the oatmeal I ate a bit ago..maybe I just need to drink water..to use the bathroom. I tried, but instead of things improving they continued to worsen. It was eerily similar to the last time I developed a small bowel obstruction after the birth of our first son, just 7 weeks post C-section. The cramping started to worsen. I made my way to the patio door and as calmly as possible, told Aaron I wasn't feeling well. He knows when I say that, a myriad of things could be wrong, and possibly serious. We brainstormed what to do.

Aaron: "Do you feel nauseated? Are you still going to the bathroom? Maybe you should try going for a walk."

"Not yet...not much...I don't want to be too far from a bathroom."

I tried to remain calm, but felt my anxiety building as the pain worsened. I started to feel nauseous. I prepared as I always do. Towel around the toilet for my knees, hair pulled back..bracing myself and hoping it might bring me some relief from the pain. It started - I was throwing up high volumes and the pain was relentless.

"This feels different," I thought. "Something is very wrong."

I've always had strong intuition when it comes to my body. I have a sense when things aren't right. As soon as I started vomiting and Aaron saw, we decided I had to go to the emergency room. No time to waste. Our friends took over with the kids. My mother-in-law came over to help. My mom got in the car immediately and drove out. As Aaron ran to pack the car with essentials for a likely hospital admission, I couldn't stand up. I was crouching in the grass beside the passenger side door. Our next door neighbor saw me and I waved, as if any of that looked normal. Aaron grabbed me an empty, mini trash can. Soon as the car started I started vomiting. I continued to vomit most of the way to the ED.

We made our way inside. I couldn't stand up straight. The pain was too severe. Aaron pleaded with the people behind the front desk - "We know what this is - this is a bowel obstruction. She's had it before. It's very serious." They had us take a seat. Around us were several others waiting and the thought crossed my mind - are we too late? I continued to rock back and forth in the chair, holding an emesis bag.

Thank goodness they called me after just one other person. Into triage we went, and no position was comfortable for me. I moved between sitting, standing, kneeling, rocking, walking. None of it helped. Aaron kept sticking his head out the door, pleading to the nurses, "I know you're very busy, but my wife is in a lot of pain." The cramping was so bad. At one point I was sitting in a chair and Aaron swears he saw my head fall back and my eyes roll into the back of my head. He thought I was going to pass out. He grabbed my shoulders and yelled - "Sam! Sam are you ok?!" I've never seen him look so terrified. I didn't pass out but I felt weak.

Finally the nurse came in. So many questions were asked and Aaron did his best to answer for me because every word was hard to form. They tried 2mg of IV morphine. No relief...

[swojnowiak]

Adjusting

Since my last post, life with my ileostomy has become significantly more manageable. Not only is the pain I was initially experiencing gone, but I’ve become accustomed to day-to-day life with the appliance. Honestly, it’s not all that bad. I do have my moments when I wish I didn’t need it, but overall the adjustment is a welcome one compared to the pain, urgency, and embarrassment I was dealing with before it. I’ve gone back to working out normally (although I have decided to forgo swimming until after my takedown surgery). I’ve noticed that my strength and muscle mass has increased greatly since my 6 week lifting restriction ended, and I’ve gone back to eating salads and fresh fruit and have had no problems. Really, the only issue I have with it now is how it’s affected my physical appearance. Knowing that it’s only temporary has helped me to deal with that, however.

n

My takedown surgery has finally been scheduled for May 9th, if all my check-ups and tests go well on the 8th. I am eagerly awaiting that day, but at the same time am afraid of undergoing yet another major surgery. This surgery shouldn’t be as extensive as the first, yet the repercussions of it will be difficult to adjust to for a while. I will most likely go back to having some pain and feelings of urgency, and may even regret having it done as I did when I had the first surgery. In any case, I have faith that those symptoms and feelings will abate and I will be able to live a healthy and normal life when all is said and done.

n

I’m not going to lie - I have days when I just want to throw in the towel and say “to hell with this!” I have days when I wonder why this had to happen to me - why I have to deal with major health issues. Then I remember…there are so many others out there like me, or much worse off than me. There are others who ask themselves the same questions every single day, and who still grit their teeth and press on, knowing it could always be worse - that they’re still breathing - they’re still alive. It’s like anything in life - when the curveballs start flying at you, you can throw down your bat and let them pelt you, one by one until you’re so bruised and broken down that you lose the strength to stand back up again - or, you can stay on your feet and keep swinging. Sometimes it helps to know that no matter how tired you become, or how much you feel as though you’re losing control, you can always take control of your attitude. Perseverance is a remarkable addition to the human spirit, and it’s the main thing that’s kept me swinging.

n

n

“What doesn’t kill you makes you stronger.”

n

[swojnowiak]

On the struggle bus

I knew having this surgery would not be easy, nor would I feel like I was in the best shape of my life immediately after. I knew it would take me months if not a full year before I would start to feel like I've never felt better. Right now, I'm having a really hard time coping with it all. I'm having normal emotions, but they're prevalent enough that they sometimes make me question whether I made the right decision, even though I already know the answer to that - yes. I'm a very active person. Exercising is my form of stress relief. I also love to cook, and cook healthy foods for that matter. I love to eat salad and raw fruit. I love to wear fitted clothes and feel confident in my own skin. All of those things are very limited for me right now. With an ileostomy, I can't lift more than 15 pounds for 6 weeks, and even after that I have to very gradually reintroduce myself to the vigorous exercise I'm used to. I'm a swimmer, and swimming with a bag on your hip, worrying about whether the adhesive will come undone makes things very difficult. I have yet to even try. I can't eat any raw fruits or vegetables for 6 weeks, and after that have to be careful so I don't cause a food blockage. I've been living in leggings, yoga pants, and sweatpants because I just can't make my fitted jeans and other pants work right now. At least I'm comfy! Being a 22 (almost 23) year old woman, these things mean a lot to me. They're a part of my healthy and confident lifestyle and right now it feels like they've been taken away from me, (even though I know that isn't entirely true). I'm also having trouble finding an appliance that will work well with my ileostomy. I'm dealing with painful skin issues because my skin is super sensitive, and with the second unplanned surgery and unforeseen takedown of my initially "perfect" stoma, I was left with a far less perfect one. So right now, I feel far from normal or healthy. The one thing I will say about having this done, however, is that for the first time in years I have control over my body. I can decide when I need to use the bathroom. Gone are the days when I'd sit in class, having made sure I had the end seat in the lecture hall, praying I wouldn't have a Colitis attack forcing me to get up in front of tons of people and (hopefully) make it on time. I realized this the other day during my 3 hour graduate class. Making it through a 3 hour class?! Before, that was a legitimate concern for me - not so much anymore. The thought didn't even cross my mind until I felt my new sense of control for the first time. I cannot wait for my third surgery and takedown of the stoma, even though at the same time, the thought of another surgery right now is exhausting. I hope to have it in May. In the meantime, I will continue to face these challenges and hopefully get to the point where I feel confident and comfortable living with my ileostomy.

[swojnowiak]

Amazed

The human body amazes me. It’s amazed me for a long time. The ways we are able to adapt to the most extreme situations and the ability we have to heal from intense trauma is unbelievable. In my case, this ability was both a blessing and a curse. I spent nearly two weeks in the hospital when I was only supposed to be there for 4 days. My surgeon was pleased to see that just one day after surgery I was healing remarkably fast. We were certain I would be home in no time. One medical resident was prepared to boot me out after only 2 days. Thankfully we didn’t agree with or act on that opinion.

nn

Funny how I said to my parents before going under the knife that I just had a feeling I would be the difficult patient. I always have been. I’ve stopped placing my faith in statistics because I always seem to defy them. “Less than 5% of people have this complication.” I’ve been that less than 5% before. More than once. I just had this feeling. Maybe that’s why I was so afraid to go through with it. My gut feeling has never been wrong.

nn

Sure enough, things went south rather quickly. Nothing would pass through my small intestine unless I threw up or had a coughing fit - which, after major abdominal surgery, hurts like hell. I started feeling nauseous all the time. Food repulsed me. I lost 15 pounds over just a few days. It’s a pretty scary and hopeless feeling when your surgeon comes into your room and after trying literally everything - a CT scan, two X-rays, a very unpleasant nasogastric tube, among multiple other physical tests and trials - says to you she “honestly doesn’t know why nothing is working” and that she’s “never had this happen before.” When your top notch surgeon at Mayo clinic says that to you, it’s hard not to feel terrified.

nn

So, we did the only thing left to do - we went in for a second surgery. What was supposed to be a quick 15-30 minute surgery turned into a 2 and a half hour ordeal. I’m lucky to have the surgeon I have. She used her knowledge and intuition to find the problem. My body had healed so quickly from the first surgery that an adhesion had formed near my liver - in a spot she hadn’t even touched. My body had grabbed onto my small intestine in that spot during it’s attempt to heal and caused a kink to form which wouldn’t allow anything to pass without intense pressure. It hadn’t shown up in the CT scan because the contrast medium they injected dilated the kink just enough to cause it to appear normal. The healing had inadvertently caused another problem.

nn

After getting rid of the adhesion, it was like flipping a switch. Everything started to work and I was discharged within 2 days. It’s amazing how something so seemingly small and insignificant can cause so much pain and suffering. It’s even more amazing how quickly I’ve bounced back. While I’m not 100% myself yet, I’m getting there. Almost two weeks ago I was so sick and frail and without any answers that I was losing my faith and wondering if I would ever get better. Today I worked out for the first time in over a month, I’ve been off all pain meds for days and my appetite has fully returned.

nn

Through all of this, I can’t even count the number of people who have said they are praying for me. My Grandpa Schomberg’s words come to mind when I think about that: “…it’s not luck, it’s a blessing. If there is one thing I want you to remember it’s this - there is nothing more powerful than prayer.”

nn

The human body is amazing; but the power of prayer amazes me even more.

[swojnowiak]

New Year, New Beginnings

The new year has arrived, and I can honestly say that despite all the pain, the struggles, the physical and emotional turmoil, I am pulling through. I'm alive and so blessed to have the family members and friends that I do in my life. I have friends visiting who come with understanding hearts, nonjudgmental and deeply concerned about my well being. Though I look like I've been through hell, they talk to me like I'm no different than I was before. That means more to me than I'm sure any of them know. My parents take shifts every night, sleeping on quite possibly the world's most uncomfortable pull out chair, just to make sure I'm not alone in my hospital room. They run to my bedside when I need a drink of water, a bucket, or just someone to hold my hand. They deal with my screams of pain, and still get me up to walk me down the hallway, no matter how slowly I need to take each step. God blessed me with the most understanding and loving parents imaginable. As I walked down the hallway the other day with my dad, I looked at him and said, "sorry you got stuck with a sick daughter." He looked right back at me and said "I didn't get stuck with you." We kept walking. The next day, on another walk, I looked my dad in the eyes and thanked him for just being there. I don't think I could have meant it more in that moment. There's something to be said about people like that; people who just by being there make your life that much better, that much more meaningful. The texts and phone calls I've received from friends and family; the Facebook messages - they keep me going, keep me strong. This wasn't something I wanted - a major surgery right in the middle of my intense 15 month accelerated nursing program. A surgery that I knew would be excruciating to deal with immediately after. 7 hours - 6 feet of large intestine - gone. But what they removed would have sent me spiraling into a state of illness that I may never have fully recovered from. I had no choice, but it doesn't make it any easier to deal with. At the same time, I don't consider this losing the battle to Ulcerative Colitis. I consider it beating it. I no longer have the disease. And while this will not be an easy transition, I will be more normal than I could ever imagine. I don't remember what "normal" feels like. I've been sick for so long - 14 years. So with the new year, my hope is that life will begin to open doors for me that I, at one time, thought would never be possible. I will take what I've learned from this experience and apply it to my future nursing career. I will care for others with empathy resulting from having been there. And while not every situation will be relatable for me, I can say I am human. I feel just like they feel, and I've felt what it's like to be hopeless; to be scared of the unknown. But if we don't take a chance on the unknown, how can we ever know if the grass would have been greener on the other side? This was my risk, my last resort. So far, I don't regret it. Here's to new beginnings.

[swojnowiak]

[swojnowiak]

“The most beautiful people we have known are those who have known defeat, known suffering, known struggle, known loss, and have found their way out of the depths. These persons have an appreciation, a sensitivity, and an understanding of life that fills them with compassion, gentleness, and a deep loving concern. Beautiful people do not just happen.” - Elisabeth Kubler-Ross