I don't really have any exciting updates to share. But I did get outside and soaked up some of the good weather we are having and just sort of thought about things so I wanted to write this down.
People I meet are constantly thrown off with the fact that I have a terminal illness. I worked for as long as I could, right up until the day I was admitted to ICU for two weeks and told I won't live much longer. I don't talk much about my illness and at times get frustrated with being unable to do all the things I could even just a year ago. My diseases brought me down hard when my body couldn't take it anymore. And I won't lie, I have some days where it is more difficult to get out of bed than others just for the fact that my mind sort of thinks 'what's the point?'. BUT. I never, ever allow that to run my life. On those days I work even harder to find a way to take charge of the day, shower, put on real clothes and maybe some lip gloss and find an activity that will bring me joy. I am also incredibly fortunate to have this huge support system of people that love me and will always find a way to lift my spirits, any time I need it. I don't let it beat my spirit down, which is what I think people see in me that surprises them. I truly believe that continuing to live my life with gratefulness, graciousness, faith and happiness is one of the reasons that I am still alive. I know there are people out there that would take the other route, crawl up into a ball, decide they can be nothing but miserable and sick, complain about their situation and accept their fate. That isn't me. I have lived my life to the fullest, to the best of my abilities and plan to continue to do so. I focus on the things I CAN do and I fill my cup by picturing all of the things that I WILL DO, eventually. I suppose sometimes this attitude and my behaviors may have held me back at times when it comes to getting listed and I will own that for what it is. Although I fully realize and comprehend how sick I am, I don't tend to play the part. So even the the words coming out of my mouth at some of my visits have been "I am definitely declining and I am getting frightened that I might not live long enough to see a transplant possibility with my appointments being scheduled so far out" - it is like they were not hearing those words because sitting before them seems to be a girl full of life. I still smile all the time. I always ask how others are. For the ones that I know I have seen before, I try to catch up with them since our last visit. And I laugh a lot. So although I am dying and even feel like I am dying, my appearance seems to throw people off. A dying woman couldn't possibly be so at ease, smiling, at peace and content, right? As I become more and more ill, now it is like they feel the need to 'check in' with me, to see if I really understand that I am dying. I have had more than one provider actually say to me 'do you understand how serious this is?' or 'you are very, very sick'. As if I haven't been advocating tirelessly for them to have more of a sense of urgency, even just to at least match mine. It has been frustrating. But I also can't find it in me to walk around a shell of a human being, no smiles or joy or peace. I can't even picture it. And I don't want to.
I am dying. AND today was a good day. Both can be true!
WHAT AN AMAZING DAY! My family was able to pull off a really sweet birthday celebration for me today. Rochelle had invited us over some time ago to celebrate my birthday at their house so they could handle the cooking and Scotty could show off his amazing outdoor pizza cooker again. His pizzas are SO GOOD! Anyway, we pulled up to the house and something was definitely up! They had a tent set up in their yard for me with signs that said 'Honk, It's My Birthday!' and balloons and Hawaiian decorations - I couldn't believe it! We ate some delicious pizza and pretty soon I saw a line of cars coming towards their house. It was a parade! FOR ME! Everyone met down the road and all traveled together at the same time to drive by, honk, wave from their window and drop off gifts and flowers. I felt like a princess! I never in my life thought I would have a parade for my birthday! But it was so special and I am so blessed to have these people in my life, loving me and lifting me up over and over and over. So thankful.
I was told today that I will in fact be going home rather than be transferred to UW. Hallelujah! I was very careful in my packing (not too fast because any slight movement drops my levels and sets off their fun alarms) and got ready for momma to pick me up. I will need to follow up with both Dr. Crim and Dr. Raghu next week. I have this little shimmer of hope that this hospitalization will be the spark that really gets the ball rolling towards transplant. Waiting for weeks or months for appointments just to get listed has been a battle for me from day one and has been probably the most frustrating part of all of this. SO. More prayers that this will get them to give me appointments sooner due to my continued decline in health! Photos below are of me finally breaking out of the hospital and all smiles knowing I get to sleep in my own bed surrounded by my family!
Well, I seem to be at somewhat of a crossroads here. My situation isn't improving as quickly as we would all like. The doctor feels like my case is out of his pay range (his words, not mine! Haha!). So if I don't improve by tomorrow we will look at a transfer to be admitted to UW instead. That being said, I personally am starting to feel stronger just a little bit and would much rather go home to continue to recover and regain my strength. Please pray for me!
I just love my family so much! My ICU room is located on the bottom floor so I can see the area right outside my room. People don't typically drive behind the hospital but there is a little skinny driveway for people to access. My mom and Eli came by this afternoon with Aulani and had painted the car with supportive words and it just really made my day. And then as if my heart couldn't feel more full, my sister did another drive by after she got off work. It really eased some of my loneliness and I appreciate them SO MUCH!
Hello, hello! Just a quick update, I have found myself back in the hospital again. Seems to be the same issue as last time with fluid build up, which is really wreaking havoc on my O2 levels. So I'm here for a few days for heavy duty IV diuretics and then expelling all of that fluid build up - so my days will really consist of Netflix, Animal Crossing and peeing (TMI, I know!). The doctors here have been communicating openly with Dr. Raghu at University of WA. They will try these treatments locally since it is basically what they would do for me at UW. But they are aware of the situation and prepared to take me on as a patient if things don't turn around. My stay here will be different this time around because we aren't allowed to have any visitors! At least last time I was allowed one person to be here with me. My mom has the option to take a Covid test so she can be my caretaker while I am here, which I believe is the plan. But honestly I am really praying this all turns around quickly and I can be home soon. At least while I am here, I have a view I really can't complain about!
So, last December (which feels like a different lifetime ago), I decided that I wanted to gift my family with an experience rather than material things. So I reserved us time at our most favorite house on Lake Sutherland around the time of Rochelle's birthday. And we have all been just giddy about the trip - until Covid. And until my health took a nose dive. Suddenly a trip to the lake sounded more anxiety inducing than relaxing and the work needed to sanitize the house before we felt safe setting foot inside it - I wasn't sure we would still be going. We all started waffling a few months ago but finally landed on something that we all felt safe about. Rochelle and Scotty would stay at the house, with the kids having the ability to opt in or out depending on how they felt. Mom and I would make day trips and not spend time inside the house, just time outside on the deck. In the end, I am really happy we went anyway. The lake is my happy place and I don't know if I truly have any future opportunities to spend time there. And I really just enjoy sitting there, taking in the nature and watching the kiddos have fun playing in the water. All in all I would say it was a great trip and I've got no regrets!