I have to say one of the most exciting things I am working through right now is becoming reacquainted with my faith and reconnecting with God. I was born and raised a Christian so I had plenty of exposure to religion my entire life. We weren't particularly a church-going family but we knew what we believed and I have always had a relationship with the Lord. Sometimes that faith and the connection felt weaker than other times. I think this is something we all go through as Believers. But He is always there, waiting with open arms when I reached out for him at times in my life. I have become part of a really cool, small Bible Study group and I absolutely love the way we are guided through the bible, apply teachings to our daily lives and learn ways to reach out to the Lord and be more in tune to receive his teachings. Being 'born again' Christian is a term I have heard over the years and after having experienced it first hand when I thought I was moments away from leaving this world, I have to say there is nothing more beautiful and powerful! I am still learning new things all the time and it brings so much joy to my heart.
I have trouble getting to services at times but the people in my life find ways to keep me feeling strongly connected. One of those ways is by bringing some beautiful Worship right to my doorstep and sharing in praise! This is so special to me and I always feel so much better physically, emotionally and spiritually after they grace me with their visits!
I'm working my way through a flare up and it tends to really have an impact on not just my physical body but my emotional health as well. Some of the beautiful people in my life made something for me to put over my bed - it means 'New Breath' in the language of my people and just seeing it brightens my spirit. I also managed a hobble out to the mail box to get some fresh air and try to stretch my legs out a bit. I have been told the most important thing I can be doing in preparation for a huge surgery like a triple organ transplant is to maintain my health, do something active every day and focus on getting strong to make my recovery easier to get through. Staying focused, even on the hard days!
Since this is a blog about not just my amazing life but also my medical challenges I thought I would share a photo of what my knees look like at the beginning of a flare up. System Sclerosis (SSc) causes all kinds of fun things and I have to say I feel blessed in a way that this disease hasn't moved its way to my skin yet. The tightening of the skin is something that is debilitating and it completely changes your appearance. I won't post any photos of that here but if you search for a google image of scleroderma, you will see what I am talking about. I have noticed some tightening in my fingers and toes (especially at the tips) as well as around my eyes and mouth. I can only notice it when I look at pics of myself from a year or two ago and I see my eyes seem a bit sunken and my mouth is smaller now compared to then. My version of this disease (it is different for everyone) really effects my organs and joints. Which is what caused my lungs to harden and turn to scar tissue. And it causes an incredible amount of pain in my joints. I started having pain in my knees several years ago and was told it was arthritis and I did my best to manage it. It wasn't until I was diagnosed with SSc that it became obvious that a lot of the pain I have had over the years was likely due to my autoimmune disease, not arthritis. It used to stick mostly to my knees but has now spread to other joints, like my ankles, elbows and wrists. They don't get terribly swollen like my knees do but the pain is still very real and I am sure that will happen eventually as the disease progresses. Flare ups last for a few days up to two weeks and doesn't seem to be 'brought on' by anything specific. Just hits me at random, hangs out as long as it feels like and then disappears as quickly as it came. Along with the joint pain also comes overwhelming exhaustion and just feeling lethargic. Fortunately, now that I am not working, the battle isn't as tough and I can baby my way through the flare ups with heating pads, meds, self massage and lots of naps! The photo below is the beginning of a flare up, full blown flare up looks more like I am trying to hide a couple of balloons in my knees and it is quite difficult to get around not just because of the pain but because it is hard to bend my knees.
Even Aulani wants to be on the TEAM! I hope everyone has a beautiful day today. Headed to radiology soon to check off a few things from my 'to-do' list for the liver transplant team at UW. Happy Monday!
And here is my good friend, Mike. He has been one of my most favorite people for as long as I can remember. Always answers the call to help, not just for myself but literally anybody in his life. A stellar human being, all the way around. I love you beyond the moon, Mikey!
Just like everyone else we are navigating how to live our lives during a global pandemic. I really, truly wish I could see more of my loved ones but also understand that it just isn't safe right now. I did get some visitors today and it was a huge test for everyone to NOT HUG each other and maintain some distance from each other! But we managed to behave ourselves and kept the visit outdoors to minimize any germs in a closed in setting. Hand sanitizers for everyone!
I was sent home to rest up and prepare for the onslaught of tests, scans, labs, doctor appointments to take care of in order to be listed for a double lung and liver transplant. Eli and I headed to UW today to follow up with my care team and start on some of the necessary tests. We opted out of my mom going with us because Covid is turning into something very real and very scary, so we wanted to keep her safe from unnecessary exposure. It was a long day but it felt good to take a small step towards my transplant journey.
Checking in with my WARRIORS today! Wow, is anybody else reeling from this COVID-19 situation? I have SO much fight left in me and lots of time to do good things in this world. The additional complications of navigating not just a triple organ transplant plus praying for the health and safety of everyone out there - time to double up on the good ju-ju vibes and the power of faith and payer! And don't even get me started on my stellar medical care teams!
I realize it has been some time since you have heard from me - I have always sort of chuckled when people 'retire' from their working life and talk about how quickly their days will fly by. They were NOT lying! My day starts fairly early, I like to take my morning meds and get breakfast going between 7 and 8. Keeping up with appointments, home visits, the kiddos, wanting to stay involved in everyone's lives while living in my bubble really makes the time fly by. Evenings have been really great since I have been home from UW - we do dinner together, usually pick out a movie or show before bed to wind down. Or there are nights like last night where we broke out Mario Kart and the kids and I spent a few hours of playing that game of ' just one more round' (you know what I am talking about!) until almost midnight.
As you can imagine, among all of the unknowns that I have had to contend with, financial responsibilities are beginning to weigh pretty heavy on my heart and mind. I am so incredibly blessed to have the most thorough insurance coverage on the planet and can't thank my Tribe enough for their Health Benefits. I know at this point I will be unable to go back to work anytime soon, if ever. I am ALSO blessed in that I was approved for disability payments *just* in time! That being said, the amount is of course a fraction of what my normal monthly income would be and the trips to the hospital and day to day costs, monthly bills, still providing for my kiddos and their needs, it was all beginning to pile up in a way that was causing me some pretty serious stress.
And then.... lo and behold my beautiful warriors once again come to my rescue! They began a fundraiser, which not only raised money for me to set aside to help pay for things down the road and other anticipated costs. My good friend Mike coordinated with my amazing cousin, Ginnie to create and sell hoodies, t-shirts, tank tops, etc. And they are all in my favorite color, PURPLE! My people really do go above and beyond! So now every Monday is 'Missy Monday' and I get to feel the love and support from everyone and enjoy the waves of purple!
I got to visit with a very special lady today! Started my day off with some coffee and filling in my planner to try to keep my life organized - it helps me to stay focused. I had an appointment with Home Health in the morning and then someone from Occupational Therapy popped in to show me some tips and tricks for navigating my home and doing daily activities safely. It is sort of like learning how to do things all over again! Andi came by for a much overdue visit and I truly enjoyed catching up with her. She has a very special place in my heart.
Good morning friends, family, fellow WARRIORS! I apologize for the lack of update yesterday, I was getting all caught up on some much needed rest and slowly making my bedroom a place of calm solitude, a peaceful place for healing my body and spirit.
A few tiny updates - I will be seeing someone from Olympic Medical Home Health today or tomorrow. I've already met a few of their nurses and feel confident I will be in good hands for home health care.
I have an appointment with my PCP on Tuesday and I can't wait for him to see how much I have improved. He played a huge part in getting me to UW and getting things figured out.
I go back to UW next Friday to see Dr. Raghu. I haven't seen him since my first night at UW last week, before being transferred to ICU. Again, so happy to have so many brilliant providers in my corner and working so hard to get me strong enough to receive my beautiful gift of lungs and liver with as little complications as possible. It feels so great to be getting back on track with the transplants! We still have some hurdles to overcome but with all of you standing with me and by the Grace of God, I know it will work out.
It is so wonderful to be home. As much as I loved the care I got and the people I met at UW, there is nothing more healing than sleeping in my own bed, in the same house as my family, waking up to the funny little birds outside my window putting on a show for me and watching the sun begin to bathe the lawn and trees outside my bedroom.
Take a moment right now to appreciate something little that never really even occurred to you was so special. This is a beautiful place, this place called earth. Enjoy it, cherish it, be thankful. Much love to you all!