Together, Tired and The Transplant List

This week felt like the week before Christmas for me. And today is the day. We are about to be a whole family again. David is coming back to to work locally and wont be on the road all the time. Financially it is going to be a bit of a stretch BUT right about now, Id do anything to have us all under one roof for more that just the weekend. I am beyond excited for that man to walk through my door later today!

Not even the amount of cleaning I need to do or the rough adjustment period I have already warned him about will take this smile off my face.  So in the spirit of my happiness, because its Friday, and because it has been a while since I have done one of these posts, here are a few things that have been making me happy lately.

The countdown to today. Ive been told before that David and I have a weird relationship. Mostly because we actually enjoy each others company and hardly ever get on each others nerves. And anyone who knows us, knows we do everything together. So him being gone all week was a BIG adjustment for both of us. We made it work. And I learned a lot about myself over the last year. But together is so much better. 

It also makes me happy that the poor Durango wont be run like a racehorse anymore. David loves this thing, but I know it hurt him to rack up so many miles so quickly. 

Its been nice having a dog in the house again. I mean, the puppy phase is a bit much, but damn I love this guy. The boys love to face time me when I am out so that I can tell him what to do, because he wont listen to them. He will, but any excuse to watch him tilt his head is worth it. Hes so much fun. But I am tired!

I love how this letter says "I know this could be disappointing" and here I am adding it to my happy list. I was taken off because I was stable. I cant be mad at that. Plus the new doctor has already talked about putting me back on, so I will just enjoy it while I can. I think the fact that I am to healthy to need a transplant right now is a good thing. Im happy for the health I have.

Also happy to have a plan with my primary doctor. After years of worrying about all my other health issues and not focusing on my PCOS, the new Doc calls me diabetic! My sugar has been running rampant for years and its on me for not staying on top of it. SO, after trying a single medication over the last 6 months with no change, we are trying plan B. For now it involves more meds and probably will always be on at least one of them for the rest of my life, but while everything else is "stable' I need to focus on this. Not super excited about a new diagnosis, but thats my life for you!

Lots of big changes about to happen and Im here for it. We have been living up in the air for a while and Im excited to just catch my breath and know Im where I need to be and that we are all together. 

Happy Friday!  I hope everyone has an amazing weekend.

 

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Menu Plan 2•13

And we are back!  The boys had their second winter break last week and we enjoyed having David home too. This morning, I woke up feeling like I was ready to take on a little change. Which is good, because it looks like change is coming. After this week, David should be back working here in town. I get my husband back and I have a feeling that is gonna take a little time to get used to. 

But for now Im just going to enjoy the last week cooking for my boys, who are little foodies and always down to try new things. Which is good because this weeks menu has not one but three new to us recipes. This will be interesting.  Here is what I have planned.

Taco Cups • A few weeks ago, I had put eggroll wrappers on my HEB order and was given wonton wrappers instead. So when I saw THIS recipe pop up on Instagram I thought, why not. 

Tuscan Chicken • This is a recipe that I have had saved on Pinterest for years and never got around to trying. The flavors are different from our usual and I don't know how, but I don' think I have ever used sun dried tomatoes in anything. Fingers crossed.

Roasted Chicken Quarters • I saw a recipe for somewhere so I added them to the menu but then I realized I didn't remember where I saw it and I didn't save it anywhere, so Im totally going to just either wing it or hopefully find it. Gotta love that brain fog, because I have no idea which recipe it was that I was wanting to make!

Salmon Sushi Bake • Ill probably save this one for Friday so David can enjoy it too. But the boys LOVE it. Plus we had everything we needed for it here so, yay for one less meal to buy!  Groceries are killing me and I know Im not the only one!

Sashimi Night • The boys and I are the only ones who will enjoy this so I figured I better squeeze it this week too. 

With everyone under one roof, I have a feeling my time in the kitchen will increase.  The weekends were usually clean out the fridge nights or we would grab something while we were out. Not only will I have another mouth to feed, I will have another lunch to pack. The boys have just been buying lunch but even though they have delicious options, they usually just go through the quick line and then eat junk. So Ill probably start packing them lunch a few days a week too.  

Back to the kitchen I go! Hopefully I can fall back in love with cooking and preparing meals for my family. After having to move between so many different dietary needs and restrictions, it all got a little overwhelming. But Im ready and excited to get back in there. Actually Im just excited to have my husband back!  If it takes more cooking, Im game!

Whats cooking in your kitchen this week?

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I was taken OFF the transplant list

After almost 13 years on the liver transplant list, I have been taken off of it.  Hearing those words were almost as hard as hearing that I needed to be put on the list in the first place. But its done. For now anyway.

So why was I taken off the list?

One of the reasons is that I am no longer seen at the clinic in San Antonio and have established care here in Houston with Dr Galati and his team at Liver Specialist of Texas.

The second reason is that I am stable. Over the years of being listed, my numbers didn't change much. I didn't get better. And even though my liver did progress from fibrosis to cirrhosis, nothing completely failed. My liver, as ugly and stiff as it may be is still in there trying to do the best it can.  And being on blood thinners was pretty much the only thing that changed my MELD Score. 

So since I have settled in with my new team and things seem to be holding tight, the Doctor suggested I be taken off the list and discharged as a patient with them.  Personally, I think I may have outgrown the clinic there anyways. Or overstayed my welcome. But Ill just stop there and save that for another time.  

So what does it all mean? 

Am I still sick? Yes.  Over the last 13 years my liver has actually gotten worse. But its still in there trying its best. Do I still have Budd Chiari Syndrome? Yes, the damage from the clots has gotten to the point of no return. Even though a healthy liver can regenerate, Im well past that.  And because of my cirrhosis, I still struggle with Hepatic Encephalopathy. I still have to take medication to make sure that the toxins my liver no longer filters out of my bloodstream are removed in other ways.  Hello Lactulose! 

Do I still need a transplant?  Technically, yes.  There is no cure for Budd Chiari Syndrome outside of a complete liver transplant, so if things do start to get a little wild, that will be my only option. 

What changes now?  The biggest change for me will be that I no longer have to do lab work and appointments with the liver clinic in San Antonio. I have been completely discharged from their care.  The doctor here has already discussed doing the evaluation to get me listed here. So who knows how long it will be before that happens. Im not in a rush.

Its a done deal.  Its weird to think that for so many years I felt like I had a plan B and now Im out here just living.  Maybe it was a good thing? Maybe not? But as with all things in life, all I can do its live each day to the fullest and be prepared just incase. 

Its hard to believe its been so long since I was diagnosed.  These were my notes from that call. I remember the rush and panic over the following days. I remember the way my teeth chattered as I tried to tell David what the doctor said. I remember starting this little blog just a few weeks after this because I could't find anyone else out there with Budd Chiari Syndrome who had survived. By the end of this month I was sure I was not even going to make it to the new year. And I sure didn't think Id still be here all these years later.

Life got flipped upside down. And then it balanced out. I figured out how to live with it, even after a few more diagnosis followed. I just kept going. Good days, bad days, kept going. And here I am 14 years after posting my first post here.  I can see now how, I stopped posting as my health stabled. Funny thing is, Ive had so much to say but felt like it wasn't significant enough to share for some reason. Like being stable meant I couldn't complain or talk about it. 

Like I wasn't sick enough.  I FELL FOR THAT?  I guess if I can't share my getting sicker journey, I can share my staying stable journey. Im not trying to get any sicker with out my safety net. Maybe it is time to start believing that my story still deserves to be shared. Im off the transplant list! Im not dead yet! 

So I guess the  story continues!

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Menu Monday 1•9•23

Anyone else still trying to find their way back to better eating in the new year? Or at least back to creating a weekly menu plan and sticking to it! Just me? 

One thing Im working on this month is to get back to having my menus planned before the weekend, so I can get my shopping done before the Sunday rush situation we have going on in the house currently. Im pretty ok with sticking to the menu, its the executing of shopping that messes me up. Partly because I am unable to drive myself to the store. And partly because I procrastinate and throw my list together on Saturday in a huff. Yeah, I need to be better about that part. 

This week was close. If we are IG friends, you might have seen the whole curbside drama. I love our local grocery store, but going in to the store is like fighting a whole cackle of hyenas. The store is packed and its hard to get up to the produce bins. So I usually do curbside, but their shoppers have been slacking so, I need to make a plan moving forward. Plus if I go in to the store there is a little shop there by the exit that my wallet would appreciate me avoiding. Le sigh.  

OK lets talk menu.  Here is what we have lined up this week!

Quinoa Enchilada Casserole.  Figured its about time to get back to meatless Mondays. Partly for health and maybe a little because why the hell are groceries so damn expensive. Shoot! I have made this many times before but usually add chicken. But the original recipe is meatless. And with it being so flavorful, you don't even miss the meat! A winner in our book!

Baked Chicken Thighs. I saw a video somewhere of a lady cooking up some pan fried chicken thighs and southern green beans with bacon.  I didn't save it but I have been thinking about it since, so Im going to see what I can come up with and pray it hits the spot! But Im going to bake them, because there will be some fried food this weekend. Balance y'all!

Cheesy Baked Tortellini.  The last time I made this, was our first time having tortellini. The boys were instantly in love. Im not a bit fan of pasta sauce, so for me it was ok. But the dish was requested again for this week and its easy and one of their new favs so who am I to say no?!

Kalua Pork and Cabbage.  Now this is a dinner I can get behind. Not only is it one of my childhood favorites, its quick and easy because its made in the Instant Pot. I have mine with cauli-rice and the boys will ask for white rice Im sure. UGH its so good. I can't wait!

Sausage Sheet Pan.  This is a quick dinner for one of those nights I just want to make something and get it over with.  I know Im not the only parent who needs a break from cooking dinner every day right?  Alex asked me the other night if it got boring cooking every single day. Yes son, thats why I beg for take out on the weekend. Not because I want to eat junk but so I don't have to dirty my kitchen. Selfish maybe. Im calling it self care!

Grandmas Fried Chicken.  As much as I like not having to cook, its cheaper to just do it at home.  So this weekend I think I might fry up some chicken legs at home and serve them with some salads and other veggies. 

Im still working on making meals both the boys and I can eat.  I have been dealing with more pain and nausea lately so Im trying really hard to be even more mindful of what I am eating. I will probably skip the sausage and stick to just veggies. And will probably end up eating leftovers from something instead of the fried chicken.  My nutritionist said I was ok to have my shakes just not to use them as a meal replacement, so that helps when I am not eating complete meals.

Whats cooking in your kitchen this week?

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Balance • My one word for 2023

I used to be a New Years resolution kinda girl. Then after years of making them and failing miserably I changed the way I welcome and work though the year. Now I narrow it down to one word. By picking one word for the year and using it as a guide for the next twelve months, I was able to zero in on what I wanted to do, and break it down in baby steps.  Which just works better for me. 

Last years my word was heal. I spent day after day working on sorting though moments and memories that I have been hiding away in a closet it the deepest parts of my heart and letting go of so much that had been holding me back. I learned a lot about myself and accepted a lot too.  It wasn't easy work, and its not done but Im ready to move forward. And all the healing I did paved the way for this years word.

This years word is Balance. 

In learning more about myself and making peace with who I am, I really wanted to keep moving forward with my healing but I needed to come out of the dark space it put me in. I was able to think about who I wanted to be and what I needed to do to become my truest self. But how do I continue healing and working on happiness at the same time?  Exactly...

Ive always been one to go all in on things. Even if I failed, I was up to the challenge. But I see that one of the reasons I kept failing was because I was never able to focus on more than one thing.  Last year when I was working on healing, I got lost in the dark of it.  When I tried to lock down my nutrition, I couldn't stay consistent with working out. When I try to be a better mom, I forget about being a wife too.  SO, I want to work at balancing all the things that make me, me. Because I am more than just one thing. And I know I deserve to work on myself as a whole and not just one piece at a time. I feel like this years word will be the perfect place to start.

How do I be a good wife and mom while being my own self too?

How do I push myself to be healthy but give myself grace for being sick?

How do I tear down the walls of trauma but put up some boundaries at the same time?

How do I take care of myself and others in general?

How do I commit to nutrition and movement and mental health all together?

How do I allow myself to rest but push myself out of my comfort zone at times?

How do I show up for my loved ones and take time for myself?

How do I enjoy the things that make me happy and what makes them happy?

So many things to do, and I want to do them all without burning myself out.

The last couple of years have been hard.  For everyone. As if life as a parent and just as a human living in this world wasn't hard enough, the pandemic brought out even more heaviness.  Being a mom is hard. Living with chronic illness is hard. Just surviving is hard. I get it. But Im ready to push back against life. Im ready to show up and make my own happiness again. Im ready to find my balance.

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Family, flowers and finally some sleep!

One of the biggest things I have missed about this little space of mine is Friday Happiness posts. Sharing all the little things that made me smile though out the week. Sometimes its easy and I could go on for ever and some weeks I have to really dig deep just to come up with a handful of moments that brought me some happiness. But its just such a mindset shift when I go back over them and realize they are there. And seriously, even if you don't write it down, especially on the hardest weeks, take a minute to find even just one thing that made you smile.

This week marks week 2 with the new puppy and the last week of school before Christmas break for the boys. So needless to say, its been a bit of a doozy. Thunder is learning his place and manners.  And both of the boys are tired of studying for all the finals they squeezed in before break. They are a little burned out and in need of this break. And on top of everything, I feel like I am fighting off some kind of bug. My throat is killing me and I am just drained. But I know there are so many bright moments in this week.

So, what made me happy this week? Here are some things I am thankful for this week.

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