I'm Sick, Not Stupid

While surviving the spring schedule of activities may turn out to be a huge test of endurance and spoon rationing, I can report to not only surviving the nature field trip on Tuesday but also not losing any children down the ravine---no matter how determined my charges were to walk along the edges or hang over the "rickety" bridges. I call into question the unsteady nature of all the wooden structures, since these bridges seemed perfectly fine for our male guide, myself, and all four girls to cross without incident. (Apparently it has more to do with some 5th grade boys learning the art of clomping around like Andre the Giant.) Friday I even managed to distribute yearbooks with my partner in crime whilst only being afflicted with a half dozen paper cuts. So I was tired and incredibly sore by the weekend, but not as bad as it could have been. I've certainly had worse and even expected worse, so maybe (cross my fingers) I am finally learning to better ration my spoons. 

What I didn't expect last week was to hear so many people were suffering within our own limited sphere. Babies and teachers especially have been on our hearts lately since we know many facing their own health struggles. With so many facing battles and sorrows, it makes me feel even more compelled to protect the innocent childhood moments we have left at my home. At the very least it was a great reminder to focus on what I can do, rather than the negative of what I can't or allowing negative thoughts and experiences to overtake the ME I want to be. As a result I've been trying to focus on our successes at home, and when comparing my efforts for experiencing this school year with the kids to last year, I am pleased to see this year is a vast improvement. We've definitely made traction since overhauling our lives/priorities as a family this fall, and I have hope I'm finally learning to make room to be more present for the important parts of these growing up years.

For my part I'm still struggling, adjusting, and so easily frustrated with my new normal, but I'm also learning to cut myself a break. I try not to waste energy worrying how others perceive my choices, although that meant recognizing some friendships wouldn't survive the change. I wish I could warn those friends struggling themselves that this is a time to discover how strong your foundation is, because although the decline can be subtle and sometimes abrupt, you are rarely prepared for how all-consuming the changes to your lifestyle can be. Realizing some friendships were based solely on what you brought to the table rather than emotional connection can feel like the absolute last straw some days, and subsequently I've had to acknowledge people's well-meaning words can be hurtful and learn to construct my defenses in advance of thoughtless comments.

Frankly I know Anger is the second stage of grieving, but this is the emotion I have the hardest time managing. I've been largely accepting of everything over the last few years. My health is what it is. I might feel different if I had a hand in getting here, but since I'm just trying to deal with the pieces as I understand them, I don't see much use in wasting time with being angry about it. Perhaps living in a drugged fog was helpful to circumvent this stage in the beginning or perhaps being barely able to stand long enough to shower took the wind out of my sails, but I am still left to deal with the here and now... wherever that is.  

Regrettably I have this other kind of anger I barely manage to hide, and generally I don't want my children to see my fears, anxieties, and frustrations bubbling to the surface as anger. So I tamp it down and smother it with sarcasm, denial, whatever is handy. But honestly, some days I am just struggling to deal with everything about my new normal and someone will break out the latest version of Health-Nut Weekly or tell me how they know how I feel now--because they had some mosquito bites that itched REALLY BAD the other night--and I feel my world tilt as I'm thrown down Alice's rabbit hole. I've learned not to waste energy on carrying heavy items, but I can still waste all kinds of spoons seething over someone's insensitive commentary on my life.

And then I'm twice as mad because I let the ignorant win by stealing my spoons.

Many people feel they are experts on illness management it seems. Apparently reading Wikipedia entries on the internet trumps medical professionals with real degrees and licenses and years of practice with fellowships for specialized research. Maybe more than anything, it galls me to think people believe I must have gone to Minnesota TWICE in the same winter because it was fun or amusing (or who knows why), because obviously I'm an idiot who didn't weigh every option for treatment carefully... obviously I threw darts at a map or just had a hankering to see the Midwest for the first time. I don't understand this let-me-dissect-your-medical-concerns inclination (maybe because I've always known science wasn't my thing), but having someone play armchair doctor with my life makes me feel marginalized, dismissed, and rejected. And no matter how much I remind myself that these badly informed comments are well-intended, it doesn't stop the rage and resentment that overtakes me.

Bottom line though, I don't want to be an angry person. I don't want to waste time thinking of all the ways I had to bite my tongue and use an inordinate amount of strength to prevent my inner Snark from responding.

I don't want anger to be the legacy I leave for my children to remember me by.

I want to be a better person, but I honestly don't know where to start.

Some days it seems my only option is never to be in public... EVER. Or to wear a neon sign warning the population I am NEVER in the mood for armchair diagnoses from hippie herbalists or pill pushers or slap-happy surgery fanatics. I have doctors---lots of them, and not just ones I found down the street but at Mayo Clinic for Pete's sake!---and while I respect my physicians' opinions, that doesn't extend to the greater public with a DSL connection. Because at this point, if I had listened to a third of the well-meaning suggestions I've received so far---I would be DEAD. Like a doornail.

Do people NOT think practicing medicine is hard??? Do they understand about toxicity levels or what it takes to actually remove an organ from the body? Have they ever had to wonder if they would wake up from anesthesia or when they could look their children in the eye again without bursting into tears from feeling completely overwhelmed? This isn't a game people! Or if it is to you, consider our acquaintance hereby ended.

So from now on, if you think some experimental treatment you read about on Jim Bob's liver blog is the way to go... drink yourself into cirrhosis and you go first.

Seriously, be my guest, but don't for one minute delude yourself into thinking that you are being helpful, that your comments are more than an annoying buzzing sound in my ear, because I am done.

I am done with smiling blandly while someone eviscerates my life with thoughtlessness veiled in friendly advice. My inner-Eastman has decided some people need a reality check or to be shown the door, and while I will try to find a polite way to do so because--- Jesus help me---these people undoubtedly believe they are being supportive, I have to find a way to protect myself. Because I only have so many spoons, and they aren't up for grabs anymore.

I am a real person.
   With fears.
   And struggles.
   Like anyone else just trying to live their life.

And if you are really my friend---as my brother always reminds me---you will understand.

A year older… and working on wiser

September I turned another year older and this month marks the beginning of our first year of Liver Disease 101. But if you ask me I aged way more than one measly year in the last 12 months, so only being able to claim just one candle feels like a total jip.

I didn’t really feel well enough for any birthday-palooza time anyway, since the second attempt at beta blocker fun was just as spectacularly unsuccessful as the first. All the things I hated about the first round of bb’s came back in full force, and I became Lazy Mom again. I prefer to think of her as Semi-Conscious Mom or Drugged-Out-of-Her-Mind Mom, but the kids are adamant it’s a tie between Lazy Mom and Loses-Everything-Even-The-Stuff-In-Her-Own-Hand Mom. So after two weeks of woozy/exhausted/mental fog/nausea, Dr. R took me back off the bb’s and declared me intolerant… for now.

Everything gets a “for now” stamp when your whole life plan gets reviewed by Mayo Clinic, but that just adds to the overall fun… insert sarcasm.

I’ve been off the bb’s for a few weeks and finally my blood pressure has started to rebounded to less coma-like levels. Apparently my body did know what it was doing for once and was in protest/hissy fit directly following beta blocker-round 2. And in its zeal to offer a never ending landscape of physical ailment experiences while I waited for my blood pressure to course correct, my body offered up an unexpected round of vertigo and the on-set of trigger finger. I thought Dr. R was pulling my leg at first, but apparently trigger finger is real and not some John Wayne movie term.

Add two new ones for the ever-expanding ailment list and the knowledge that sometimes staying upright on a stool can actually be quite a challenge.

I sent off more blood to Mayo again which always feels like a vampire extravaganza. It is nerve-racking to MAIL my hard-earned blood in a square igloo with dry ice, hoping the timing works out so I don’t end up having to repeat the process any sooner than necessary. Hopefully after this round of labs Mayo may decide they don’t have to see me first thing in January. Jesse and I thought March was less miserably cold in Minnesota, so we are hoping to postpone a bit past the first of the year.

This fall Jesse and I are also reassessing everything. Last year was all about reacting to my ever-changing health status at a sprint-like pace, and as we’ve been told over and over that isn’t going to change from here on out, it’s just going to become our new normal. We will have to learn to live with a new level of anxiety/uncertainty that previously would have been unknown to us. Bottom line: Life changes and you have to move forward eventually. So we have been talking about what that means for us and listening hard to the kids when they talk. They too are trying to adjust and we see the uncertainty slipping into their previously confident attitudes, and that is a GAME CHANGER.

Fortunately before I went too far into a shame spiral, I went to a prayer group last week that I had been trying to get to for a YEAR with no success and walked away reminded how fortunate I am to have the husband and family support I have around me. I’d been trying to confront guilt and regrets for all the friends I wish I could help or the things I seem to always be saying no to these days, but instead came home more confident that now is the time to be selfish. The whole week seemed to be full of others calling me strong and noting my strength, and when you don’t feel strong, when you feel as weak as you’ve ever known yourself to be, it is hard to absorb those words. So I looked up the definitions of both and decided maybe I am strong, or in my mind just Eastman stubborn, but at least I can work with that last one.

I’ve learned to focus on what matters to me, and nothing matters more than my children, our family. Family is what picks you up when you fall, holds your hand when you get scared in the dark, or carries your bag when it gets heavy, and we are rich in family—the genetic and the honorary kinds. So instead of saying no all the time, I have to remind myself I say yes just as often. I have been angry and frustrated at feeling like I never find any traction, but then I look at the next Mayo igloo stalking me in the dining room, waiting its vampire turn, or remember having to sit down in the middle of Target because it was that or fall down, and remind myself our path just doesn’t look like anyone else’s right now. My yeses have more power because there are less to go around. 

And I gain strength from my safety net. I have no doubt or fear of being caught, if it comes down to it. I may not like needing to operate with a net, but it’s there regardless. So me and the safety net went for a walk on Sunday, a 5K for breast cancer. It wasn’t for me obviously, but in a way it was. Everyone wore pink and our family cheered me on as I walked up and down the hills of downtown. It wasn’t expected of me, since I had a chair in the tent, but I didn’t want to not try. We were toward the back of the crowd, but I didn’t black out or need to sit down or even stop to rest. My Eastman stubborn kicked in and I wanted to do it, for me, for us. Tristan even noted I was not the VERY last person to finish, so I felt like I won back some strength Sunday, even if it was only in my children’s eyes.

It was a good day to wear pink.