19 October 2012

health & heart things

the lymph nodes in my neck are stinging today. a sure fire sign i pushed my body too far yesterday. as we were jumping into the car yesterday morning to head out on a mini road trip to meet up with family, i remarked to my mom, "why is it that when supposed to be resting, i am still flying at 100 miles an hour?"

there have been some loops health wise lately. or should i call them hiccups? that is just the way my life goes, and is. always something. i am in a constant state of learning and reassessing and changing. it all molds me to a better version of myself and softens my heart. which ironically enough, is exactly what i prayed for this morning: to allow every bit of everything to soften the edges all around my heart.

it isn't easy sharing your heart all the time. even in blog land when you have control over precisely what you choose to express and the details of your life you put out there. i am not fond of bleeding all over everything, but at the same time, my poker face is awful. my feelings are on my sleeve all the time. this is a small explanation as to why i haven't been updating as much as i want. there are so many drafts written that i haven't hit publish on. i strive to be open and honest about my life, the good, the bad, record memories, happenings, triumphs, the stuff i work at every single day to make peace with, the reality and multi-faceted layers of cystinosis. the balance is tricky; my life is so so GOOD, however there are many quiet wars happening daily that I don't talk about and i cannot tolerate pity from others, because there have been endless divine interventions that have occurred for me to be writing this right now.

the truth is, this summer was the second most painful of my life. it hurt to venture where i had to go personally, spiritually, emotionally... but i see now it was vital to so many pieces of where my life is now. growth is no joke; the authentic stuff that rattles you to the core is not a clean, easily navigated path. but oh the grace i found at the other side of it all. the lessons i am still digesting, ironing out, making pretty and putting into play. sometimes something really great and wonderful has to be torn down, bit by heartbreaking bit, utterly and completely, so that it can be replaced with something more pristine, more lasting, more intentional.

i found out a few weeks ago that a certain virus is active (again) in my body. a virus i battled for years after my kidney transplant. it eventually led to all of my anti- rejection medications being stopped. technically, when you have an organ transplant, you are supposed to take these drugs for the rest of your life, so that your immune system doesn't attack the transplanted organ and start to reject it. i was having such a difficult time with this virus (10 years ago) that my pediatric nephrology and infectious disease team decided it best for me to try going off all of these drugs to give my immune system strength to fight the virus. basically, i had to risk losing my kidney to get the virus under control. it was causing so many problems, the biggest of all being all my tests were pointing to the fact i had developed lymphoma from the virus, except that i had not. it feels like a small thing now, but it has led me to being off all anti-rejection medications for over 10 years now. i know in my heart of hearts that this is why sookie is alive and breathing and laughing here with us all today. there are a few anti-rejection drugs that are safe to take during pregnancy, but it is all such a fine balance.

exhaustion is an old friend and a huge obstacle right now. life doesn't slow down and i don't want it to, but at the same time i have to make sacrifices to rest. that is the only action i can take right now. because i am not taking anti-rejection drugs, my immune system should be able to handle all of this. should is an important word. ::wink::
early next week i will have more blood work and depending how those results looks, perhaps a picc line (kind of like an IV that can be in for months at a time, not ideal, but there are worse things!) to deliver intravenous antibiotics. obviously i don't want that, but if it is action toward more energy, a happier momma, and a more joyful little family all around? i'm all for it. i'm tough, i've had two of them before. ;)

to have all of this staring at me again isn't easy. it was a long tough fight before, and now here we are 10 plus years later, i am a mother and i am needed so fiercely by our girl.

but there are endless victories! this forced down time has resulted in me truly recognizing the power of being present, being intentional. when you take meticulous care to be deliberate with your time, it creates true focus. i've learned that in a big way these last several weeks.

when you whole heartedly embrace the good and celebrate every little nugget of joy, it gives the good so much more weight and power. this little girl of ours is a sheer delight. she is spreading her wings, voicing her opinions, making her passions known to every creature in this world, from the the tiny potato bugs in the driveway to the deer in the mountains. i look at her and see myself, i look at her and my body rallies to march on, i look at her and vow to fuel her imagination every chance i get. it crushes me when i have to miss out on one second of her life, but i remind myself it could be worse, and more difficult, if i end up on the hospital. so we shift and adapt, my mom and dad always step up when we need them and that is a blessing and i gift i don't take lightly.

and if i need a picc line next week? i will incorporate it into my halloween costume somehow! mummy with pink hair anyone? ;)

happy friday!
find the lessons in your challenges.
find the good in your struggles.
embrace the perspective in your obstacles.


  1. I know you have to be, but it goes without saying: you are a brave and lovely woman! I'm so sorry about the news of the virus, and I can't even imagine what having a picc line in for days on end is like, but I know you'll make it through this, just as you've made it through (exhausted) everything else! I only know you through Instagram and your blog, but I can honestly say I am proud of you, and hope to know you for a very long time. :)

  2. I just wanted to leave a comment and let you know that I will be praying for you. Specifically for physical and emotional strength. Because I know personally they can go together! Your story is amazing and you give a lot of perspective to your readers by sharing it with such an outlook of hope! God bless.

  3. You have such a gift for writing... I've read several of your posts and have to tell you that I am praying for your healing and your sweet family. You've touched my heart today! Be blessed... jules

  4. Your journey breaks my heart and your words heal it all at once. Hang in there you and know that even from afar good energy is being sent your way.

    Following ya now from Monday Mingle and lovin' it. If you are up for a bit of a ride come join me as we ride the wave of life at localsugarhawaii.com-- guaranteed to be filled with ups and downs and everything in between and I'd love to have you with us.


  5. This is a very thoughtful and moving post. My sister gave a kidney to one of our family relation so it gave me a lot to think about. Life really has its challenges and you have to keep a positive attitude to survive. Hang in there... there is a silver lining to every dark cloud.

  6. oh wow you sound so strong, and what a blessing your daughter truly is. I love what you say about being intentional with your time and I totally agree, and need to do it more.

  7. Thank you so much for linking up your heartfelt blog with my blog party this weekend. You seem such a stong, brave woman :)


  8. Thank you for sharing your heart and linking up this week!
    Your little girl is precious!

    These words:
    "sometimes something really great and wonderful has to be torn down, bit by heartbreaking bit, utterly and completely, so that it can be replaced with something more pristine, more lasting, more intentional."
    were beautiful and held such truth.
    Again, thank you for sharin!


  9. Hugs, from a mom suffering from chronic illness. Big hugs.

  10. Such a great post. I am inspired by your strength. I am in a different but similar situation. I'm learning to rest from the fighting and have strength in Him. I read a verse this morning that was helpful for me. Psalm 46:10a Cease striving and know that I am God. Thanks for sharing:)

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