My First Year of Chronic Illness, and Year 2.0

The last time I had the energy to write was January 22 of this year - and it's hard to explain why. I've made a home of hospital beds, doctor office tables, my couch, you name it. But even in my extremely increased amount of rest time, I've struggled to do much of anything. Chronic illness is funny that way. Funny isn't the right word, but you get the idea.

I was released from the hospital on New Years Day, and on New Years Eve I distinctly remember my family leaving my room by 7:15 p.m. Visiting hours ended at 8 p.m. 16 days in hospital gowns, managing bleeding, needing help brushing my teeth, eating nothing but soup and choking down ICU black coffee... was not a fun way to spend the holidays. I'd been admitted to the hospital for a third time the day after I turned 25. I was in the hospital over Christmas. I was in the hospital on Dec. 31. 

The doctors had been arguing over what anticoagulant to get me on, and one morning I woke up with my hematology and oncology doctors at the side of my bed. Both of my IV entry sites were bleeding so heavy it made me sick to look at them. But then again, I was sick to begin with. The primary symptom I've had to deal with through all of this is nausea. I've said it over and over, but I would prefer stabbing pain. Nausea is my least favorite feeling in the world, and it makes it harder to take the medications that I have to take with food. 

Since January, I've been diagnosed and diagnosed, and then diagnosed again. I'm fighting Non-Cirrhotic Portal Hypertension, Anemia, Superior Mesenteric Thrombosis, Polyarteritis Nodosa, Cavernous Transformation of Veins, Fatigue, Iron Deficiency, Protein C deficiency, and Hypersplenism. 

And if you're wondering... iron infusions are hell. I'm smiling under the mask, only because this photo was taken on my last day of treatment. I was ready to pull the IV out and run away, if I'm honest. But I finished it!! 

I had four days of rapid drip for two hours every morning. It exhausted me, made me feel sick, and my face was swelling while freckles were showing up under my eyelids. My hero of a mama was by my side every second, even when I interrupted while she read.

Warfarin sucked, too. My INR levels were fluctuating from 1.2 to 2.3.

They discharged me from the hospital at a 2.3, which was fantastic. Exactly what they were shooting for. The next week, I was down to 1.2. Every week, they would change the dosage on my Warfarin and hope it would help. And every week, I'd show up to get poked and my level was back down again.

The first day I finally got outside, off pain meds, and ready to drive to work, this ribbon was hiding behind one of my front tires. A reminder that every day is a gift. 

Oh... and did I mention I GET TO BE BACK AT WORK!?? Because I do, and it has been so nice. I missed my coworkers. I missed helping kids. I missed having a desk to go to every day and work on cases. Most people would probably love not having to work for several months. I hated it. I guess that's the cost of loving what you do.

Most of my time in the hospital was spent making calls to all of my doctors, recording audio files of what every doctor told me so I would be able to listen to it when I wasn't high on painkillers. I was arranging and rearranging appointments. I was updating my boss, and my primary care doctor, and my hematologist, and mentally preparing for whatever they were going to subject me to. I was tired but sleeping was hard because I was always anxious about what the next day would hold.

In February, I was up at KU Med for a Splenic Artery Embolization surgery. My care team was fantastic and I felt like they were family. This nurse, Molly, worked very hard to find a vein for my IV insertion, and even though she was confident in her ability, she went and got an IV specialist to help so that I wouldn't be experiencing more pain than what was absolutely necessary. The procedure was successful but with severe bleeding, so they told me to follow-up with a rheumatologist. That will be happening in June.

Oh... and a wonderful group of people put together a benefit event for me at the end of February as a way to raise money for my medical costs and give me the chance to get out of my house. 

This was one of my favorite keepsakes from that night. Two of the sweetest kids I used to babysit for made me this card, along with a bracelet in my favorite colors. The "keep smiling" made me cry. Happy tears, of course. I love kids. 

The energy I felt that entire night was indescribable. All smiles, everywhere, and finally I was getting to hug my friends. And yeah, Jack is really becoming an adult. I've been his big sister and been proud of him my entire life, but now more than ever. He is following his passions and working hard. I can't believe he was old enough to drink at the party. 

Shoutout to Ann Williamson for essentially sponsoring my medical journey. She got me this "What the hell is going on here?!" shirt, among others, and checks in all the time. Her daughter gifted me a small stuffed animal hippo since she loves them, and I've appropriately named the stuffed animal Grace. 

I'm a family person. I love the joy in the air when my family gets together. When my Mom married Andy, I got a step-dad, step-siblings, a bonus set of grandparents, and of course Aunt Cindy. I've always loved the idea that family is more about who shows up for you than about blood. I love these people with all I've got. 

"If you'd like I can pound another couple beers!" 

Jack again. Kindly offering to donate to my fund by purchasing more drinks. 

As Papa Perez would say, "Sacrifice!" 

<3

This pin, gifted to me by a family friend, is something I will treasure forever. My medical journey has been rough, but I've made that my motto through the entire thing. You can choose to suffer, and choose to be wrapped up in the pain and the fear and the uncomfortable - or you can choose joy. Life is short. 

The storm of love and cards and sweet offers through every step of this journey means the entire world to me. I could not face this stuff alone, and in that sense I am the luckiest chronically ill person in the world. Some days are great, and other days suck. My diagnosis is constantly changing, and my body is changing, and keeping up with my medicine and appointments is significantly more work than my actual full-time job. 

But this has also taught me a lot. A lot about the power of people who make it their mission to care for others. A lot about patience, and paying attention to your body, and understanding the balance of wins and losses. A lot about how looking on the bright side is one of the most important lessons to learn. A lot about how precious life is. On my fourth night in the ICU, the gentleman in the room next to me passed away. His family was crying, and I could feel their pain through the thin walls. I was incredibly supported through my entire stay in the hospital, even on my roughest days. My family and friends deserve the entire world for that. And so do the coworkers who busted their butts to do my job on top of their own. And so does my boss, who put up with my all-hour text updates and the frustrating news that I wasn't going to be in the office for a while yet.

A few things have changed since I wrote certain parts of this post. A couple of weeks ago, my shins and ankles and feet were all swollen so severely that walking was painful. I got in with my doctor (thank GOD) and he had my labs drawn. My platelet count had dropped to a dangerous level, and his assumption was that my swelling meant a medical nightmare -- blood clots in my legs and chest. Both being almost sure signs of heart failure. 

My shortness of breath while sitting in his office chair worried him too. He sent me to the hospital for labs, x-rays, a CT scan, an angiogram, and an ultrasound. Everything came back negative. 

A few days later, my mom and I went up to Kansas City to see my hematologist up there, because if I'm honest there is nobody that makes me feel safer than him when it comes to this stuff. 

He told me I could die from this stuff. He was honest -- this could kill me. If I wasn't persistent about my own care and asking the right questions, what started as a sharp pain in my abdomen was now an urgent case in two different hospitals and brought to the attention of some of the best doctors in the country. That is insane to me. When this started, I really thought a set of antibiotics would knock out the infection and I'd be back to normal. 

I could not have been more wrong. 

I'll say it again, life is short. Live it.

I'm currently waiting on an appointment to be set up with a rheumatologist, specialists in lymphedema therapy for PT, a possible future procedure with an interventional radiology group, Warfarin again, and my INR is LOW even with my double anticoagulants right now. This shit is discouraging because it's the epitome of two steps forward, 2 and a half steps back. But I try to focus on the wins. 

Like tonight. 

I'm home. The windows are open for fresh air, and I'm writing while my boyfriend plays games and we share laughs while taking turns doing laundry and deciding what to do for meal prep this week. Our dog is almost asleep behind me, the cats are getting along, the whiskey is bold, Arlo is freshly bathed, I've put two huge medical bills in the mail... and it's quiet. 

Hi. It's me. Again. So... those updates were forever ago, when I thought I'd finally be publishing and then didn't. I'm coming up on a year. A whole year of being chronically ill. A year of injections, bruising, sobbing in hospital rooms alone, meeting the best nurses ever, scheduling appointments, seeing specialists, travel back and forth to Kansas City, medication changes, anticoagulation attempts... all the things. All the feelings. 

This morning my INR finally hit 2.0. Finally. After almost 6 months of drug use and dosage changes and frustrating weekends knowing I was low. Today, it was where it needed to be. The smallest win and the biggest one all at once.

This year has taught me a lot. And I hope, that as year 2.0 starts this Sunday, it brings a lot more peace. And hey... it should be bringing our wedding, too. ;) 

To my support network -- thank you more than you know.