Short

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On Saturday, I turned the boys over to McRuger and drove the 30 minutes to my stylist’s place. When I walked out an hour later, I had significantly less hair…think pixie cut. Well, in actuality, it is a pixie cut. My hair is short. Boy short. Pixie short. I like it and I don’t at the same time.

I have an odd relationship with my hair. When I was a child, my hair was long and unruly. Knots appeared out of no where and it was a fight to keep it “in line”. My parents, neither particularly gifted in self-care (and not having the money/time for professional hair care), didn’t quite know how to do anything with mine. So, I never really learned how do anything fancy with it. Dad, in his “let’s keep this easy” phase…gave Bro and I the same hair cut for years…it wasn’t pretty. I rebelled and let my hair grow and grow for years…it was past my lower back when I finally got it cut again. I got a perm in 8th grade that made me look like a lion. And, then lots of experimentation with color (I’ve had it dyed everything from purple to orange to platinum to black) and high lights and cuts and more. My hair became something I controlled, instead of other people. And, because hair can grow and change…I enjoyed experimenting with it.

When I got married my hair was longish (shoulder length) and highlighted with blond. McRuger liked it, but he didn’t particularly care what my hair looked like. Sometime around then, I became okay with just having my hair be my hair.

My hair is curly, fine, and a shade of deep brown that can look mousey or stunning…depending on the light. I have greys coming in, which I love and never try to hide. And, generally, for the last 8 years I have had the same cut…an asymmetrical bob which gave my roundish face a bit of length. It was the classic “mom-do”.

For the last few weeks, however, I knew I was going to do something a bit drastic with my hair. Call it a fight for some control in my life or just the need for something different. And, plus, the medications and body changes have made my hair feel different… So, I’ve been scouring Pinte.rest for ideas. I even e-mailed my stylist and asked her to bring some pictures for what might work with my face.

I came to my appointment with pictures, requests, and suggestions. My stylist (whom I adore and have been seeing for 8 years) came with her own. We had the same idea…let’s go short.

I can safely say, it’s a bit more work having really short hair…but it gives me a bit of freedom too. I catch a glimpse of myself in a mirror and wonder who that is. Who is this version of Rain? What changes are happening? How do I feel about this in my life? How am I changing? Crazy to think that just a hair cut can make me think about so much.

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As for Mel’s question of what’s my non-dangerous pet peeve….

I’d have to say right now it’s people giving me unsolicited advice about how to heal my liver condition naturally. No, rubbing virgin coconut oil over my liver will not solve my problems. Neither will cinnamon tea or eliminating all fats or drinking vast quantities of specially formulated (?) water. Changing my body position while I sleep will not have a huge impact on my liver health, and neither will changing my body wash (I use an organic castile soap….). I have have a medical team, thank you. They are doing a pretty good job of helping me.  And if your cousin’s-sister’s-best friend’s daughter’s boyfriend cured his cirrhotic liver by taking weekly dips in the neighborhood mineral spa…good for him. I’ll stick to Western medicine for the moment.

Categories: blogging, Choices, feelings, thoughts | 1 Comment

Let’s talk about food…

So, it’s not hard to guess that I love food. I don’t know many people who don’t. My vices? Bread, butter, cheese, pasta, and ice cream. One of my favorite “bites” is a piece of cold sourdough or Italian bread, slathered in just enough cool butter, dipped into warm marinara sauce…ahh, bliss! And that first taste of pasta covered in real, grated parmesan with a good ragù underneath…I’m in heaven. However, clearly, with my current health situation, things are changing. And, massive amounts of fat, carbs, and sugar are pretty much a no-go at this point.

So, before I left the hospital, I was visited by a nutritionist. It was a 30 minute consult, basically about what I needed to change immediately. While the news may not have been welcome, it certainly wasn’t surprising. I was given a fairly short list of “approved” foods, another (quite long) list of forbidden foods, and a few notes on acceptable substitutes. Since discharge, and subsequent blood workups, my lists have changed and become much more permissible. Today, I saw a hepatic nutritionist and got some more information about what is “good” and “bad”. Frankly, this meeting was not as productive as I would have hoped, but I’m assuming that Dr.A will help me clear a few things up at our follow-up next week.

However, here is where I am at now with my “diet”.

  • No excessively processed foods. This includes canned, boxed, jarred, and frozen stuff.  Obviously, there are some things which I have to resort to: low-sodium canned beans, cheeses (small amounts), nut butters, sprouted wheat tortillas….but so long as the ingredient list is short and falls within the other boundaries of the diet…we’re okay.
  • Limit sugar. Seriously. No HFCS especially. I’m limited to small amounts of raw honey and the occasional “treat” of “raw” sugars. Fruits are limited to: apples, pears, blueberries, most berries, citrus, and a little fresh pineapple (because it’s my favorite). I can have bananas on a semi-weekly basis to help my potassium levels. No dried fruits, cereals, cookies/cakes, ice creams, muffins, other sweets/candy. Of course, “sugars” are in most things, but the point is to really limit how much direct sugar I’m taking in. I’m supposed to really watch out for high fructose corn syrup, which has been linked to liver problems. Apparently, give the liver enough sugar, and it turns it into fat…ewwww. Thankfully, the biggest culprits of sugar delivery (sodas, jams/jellies, fruit drinks/sauces, and candies) are not high on my “crave” list.
  • Low sodium. My blood pressure (which has been borderline high for a few years) is now under control, but they still would like me to be avoiding large amounts of salt. Salt and the liver just don’t get along. So, lots of low/no sodium foods. While I’ve never been an aggressive “salter” with my food, it’s been an interesting exercise to be mindful of it. I’ve warned everyone who comes for a meal that they will have to salt their own food.
  • Low fat/Dairy. Because my liver has quite a few fatty deposits, obviously limiting fat is a good idea. Butter is out (boo!) at least for a while (because it’s one of my “highly craved” foods. All dairy should be low or non-fat (and dairy should be limited anyway). Clearly, fried or fatty foods are strictly forbidden. I can have some cheese (mozzarella made with low-fat milk and parmesan are ok in small doses…about two ounces per day…max). “Good fats” like nuts, avocados, olive/walnut oils are fine in smallish amounts.
  • Low carb/whole grains. Frankly, this is the hardest thing about my “diet” so far. I miss lots of processed carbs…especially in the form of bread and pasta. Of course, I can have some bread-y goodness, but not a stack of pancakes or a few waffles. I can have a few tortillas in a day and two pieces of (high protein, high fiber bread). I’ve also been given permission to eat a bit of whole grain pasta, but in small helpings (read: ½ cup per day). Quinoa and brown rice are my go-to grains…followed by oatmeal.
  • Proteins and Meats. Okay, so this has been a challenge. So, McRuger and I eat mostly vegetarian on a regular basis. Before this, I might have had a solid meat protein serving for a meal 3 times a month…and mostly chicken or pork. But, my body has been craving proteins…or at least that’s what my blood is saying to my doctors. So, my doctor ordered me to eat protein (animal-based) several times a week…preferably daily…for a while. So, for the first time…in a long time…there is actual meat in the fridge on a regular basis. I cook flank steak once a week, and that can get us through 2 dinners (for the family) and a few lunches/breakfasts for myself and the boys. Plus, I have been making chicken meatballs with quinoa for a quick “protein hit”.
  • Veggies. LOTS OF VEGGIES, but specific ones. Leafy greens, broccoli, cauliflower, beets (weekly), onions/garlic (hated onions before this, learning to love them now!), bell peppers, tomatoes (yes, I know…technically, a fruit), parsley, carrots, cabbage, avocados, and a few other random ones I don’t eat much of. I have veggies (or fruits) with every meal…and LOTS OF THEM.

Because of my medications, the timing of food is also important. I need to eat on a regular basis, this means 3 actual meals a day (no snacking meals)…and all meals should be as evenly spaced as possible. Snacks are okay, so long as it’s simple…and small.

I’m not supposed to be counting calories. In fact, Dr.A doesn’t want me losing much more weight right now (another post…). He wants me focusing on eating the “right” foods to get my liver healthy. Once, my liver has started to “heal”, then we can worry about weight and such.

So, what does this look like on a practical level? Here’s what I’ve had to eat today…

Breakfast: two eggs (scrambled with pepper and oregano), ½ ounce mozzarella cheese, 1.5 cups of sautéed broccoli (leftovers), one chopped tomato, handful of chopped cabbage, 2 tablespoons of bean spread…and then put between two small sprouted wheat/quinoa flour tortillas. Breakfast needs to be my biggest meal of the day because of my medications…they hit my stomach hard.

Snack: ¼ cup of homemade granola and an apple

Lunch: one slice of oatmeal (high-protein) bread, 2 teaspoons of peanut butter, ½ cup non-fat yogurt with ½ cup frozen blueberries, 1 teaspoon of raw honey, and 3 tablespoons of walnuts. (This is not a shining example of a great lunch for me…but it was a crazy day, and the best I could do…without resorting to prepared foods.)

Snack: 2 tablespoons of mild (fresh) salsa with homemade almond flour crackers.

Dinner: 7 chicken/parsley meatballs (1 tablespoon size), 1 1/2 cups quinoa, 1 cup sautéed bell peppers/onions, 1 chopped tomato, and 1 ounce mozzarella cheese. Also, ½ cup fresh pineapple.

Usually, I have a snack before bed because we eat so early (5pm), and tonight it was 1 cup of blueberries with a drizzle of raw honey.

Drinks: Between 48-54 ounces of water.

I’ve been basically on this “diet” for 3 weeks. It’s not as hard as I thought it would be to change things…because, well, I NEED TO. This isn’t about vanity or looking good…this is about staying alive.

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Things seem to be working, at least with my latest blood draw (last Thursday). My liver enzymes continue to drop at a decent rate, as has my bilirubin, and a few other levels are going in the right direction. My iron, potassium, and albumen are still on the low-ish side, but not dropping any longer. My clotting factors are still not where he’d like them to be…but they aren’t getting worse. Dr.A has dropped one blood draw from my weekly schedule and has authorized me to lower my prednisone dosage (yay!!). So, progress is being made…just some of it slowly. Dr.A feels like I’m starting to become much more stable and my disease is responding (finally) to the changes.

And, now…I need to head to bed. Because REST is really important!! I’m still learning that lesson! I can eat as healthily as I’d like…but if I’m not resting, I’m not helping my liver as much as I could.

 

 

Categories: Choices, food, Liver | 6 Comments

A win…

After a rough morning (and even rougher night)…both boys are napping…at the same time. I got to eat lunch and rest in peace.

Categories: Family | 2 Comments

Last moments of help…

My parents have taken the boys for a walk. McRuger is asleep. The only sounds are Pumpkin’s heater and the hum of Cadet’s sound machine. I’ve had breakfast, my medications are done until lunch, and I’ve had my two glasses of water. I’m taking this moment inside myself…letting it grow and drawing strength from it. I am purposefully putting out of my head all the chores I “should” be doing. Because, in reality, those are far less important than these moments I take for myself.

These are the last moments of “help” I’ll have for a while. My parents are leaving in about two hours…and then we’re on our own for a whole week. Iggy will be helping out when she can, but it won’t be the constant help I’ve been used to since my discharge from the hospital. My mom will be back in 8 days, but that seems like an eternity from now.

But, in all honesty, I think I’m ready for it. The house is in a good space. MIL organized the hell out of everything. Iggy has cleaned and cleaned and cleaned. My mom has been folding laundry and sorting toys. Now, it’s just a matter of maintaining the house, keeping the boys entertained and relaxed, and taking care of myself…I can do that…right?

I’ve got some plans for the week. Nothing lofty or exciting. I’ve hired a yoga instructor to come to my house once a week for yoga instruction and relaxation. She works primarily with moms with young kids, and so she’s been helping Cadet as well. I have a few people lined up to drop by, just to break up the days and give the boys new people to interact with. And, most importantly, it’s not supposed to rain this week…which means we can have lots of outdoor time! I’ve got meals prepped in my head, and the grocery shopping is done.

Of course, there’s a lot of unknowns with this week. Dr.A has yet to schedule my MRI, I have a consult with a hepatic nutritionist, and (of course) my two blood draws. McRuger and I are still trying to figure out the best way to juggle those commitments…and get McRuger caught up on work. But, we can manage those things. I just keep telling myself that…”I can manage this” and then take a very deep breath.

I have a ton of posts I’ve been writing in my head. The biggest one about food and my weight loss, but I’ll wait until after I’ve seen my new nutritionist for that one. I also want to write about how the boys are doing, because…oh lordy, they are just wonderful.

But, I need to end this post now. I am going to put my feet up on the couch, sip a little lemon water, and watch the wind in the trees for a while. Each moment is a blessing!

 

Categories: Choices, Family, feelings, health, Household | 1 Comment

Mother in Law…

Today marks the last full day of my MIL being here to help me with my recovery. The woman, at nearly 70 (with a bad back/neck, arthritis, and allergies), is a force of nature. Seriously. She’s been here two weeks and has helped quite a bit. Every day she does at least one load of dishes, cleans the kitchen up after meals, does a load or two of laundry (from gathering to folding), takes Cadet for a walk, plays with Pumpkin, and helps (occasionally) with bedtime. Her being here has allowed me to take naps, run errands, and have lots of rest. She may not always be my cup of tea (politically, especially), but she knows how to run a household.

In the time she’s been here, she’s helped Cadet learn more responsibility (from putting on his own bicycle helmet, to clearing his dishes at night, to gathering clothes for Pumpkin). She’s organized my kitchen, started cleaning my garage, kept the living areas neat, and helped with grocery shopping. She hasn’t complained once, not even when I’ve thrown a few infantile hissy-fits about this or that (because, well, occasionally I get overwhelmed). MIL is always complimentary of my cooking, even when it’s dull or leftovers. And, she insists every day that I rest…even if it means more work for her.

It’s been good having her here, albeit…a definite whirlwind. And, when she leaves on Wednesday morning, I’ll be sorry to see her go. I know McRuger will be sorry to see her go as well. They’ve had some good times bonding over the boys and my recovery. Both of them can be “mother hens” at times.

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For the rest of the week, my parents will be here, helping where they can. It’s been almost two weeks since I left the hospital, and I still feel like I need daily help. It’s a big thing for me to admit that. The week after, I’ll be “on my own”, until my mother comes down again in mid-February.

I’m hopeful, that by the time my mother leaves in February, I’ll have most of my energy back. And, that my thrice-weekly trips to visit the blood lab and liver clinic will be down to maybe (fingers crossed), just once a week. But, that’s a worry for another time.

In the meantime, I’m enjoying my organized kitchen and clean clothes…and thanking every deity I can that MIL is the kind of woman who likes to help.

Categories: Family | 6 Comments

More blood and stuff.

On Friday, I had a really bad blood draw…it took 4 (painful) sticks to get 8 vials of blood. It wasn’t pleasant. I think it was the worst blood draw I’ve ever had…IF treatments included. They’ve taken so much blood in my arms that I have some scar tissue building up, so it takes longer to find a viable vein…or so they tell me. All I know is…OUCH!!

After my blood draws, I text my liver doctor (Dr.A) to let him know the labs are in and to watch for results. Which, can I just say….AWESOME use of technology!!! He doesn’t want to release my results onto my online files until he’s had a chance to talk to me about them. Dr.A is very aware of my anxiety and really doesn’t like to see me upset.

All day, I was a little on-edge. Cadet and Pumpkin both had a REALLY rough time of it…lots of vying for my attention and various toys. Iggy came in the late afternoon to finish up some organization of my homeschooling area, something we’ve been working on. MIL was doing lots of cleaning and I was trying to help…plus cooking…plus resting. A tricky balancing act on the best of days, and Friday wasn’t the best of my days.

Anyway, Dr.A called just about 15 minutes before the boys usually go to bed. And he reviewed my numbers. There was lots of good news. Most of my numbers have started to (finally) drop dramatically, some as much as half. He had been concerned that my numbers were plateauing, and he’d have to increase my meds. However, it looks as if I’m finally responding to my meds. My albumen levels were up (good), which is an indication that my body is responding to the protein I’m eating. Overall, he was very positive. I’ll stay on my current immunosuppressants and steroids until Monday at least, and then possibly step my steroid dosage down.

Of course…there was a bit of bad news…or at least, not great news. Mixed in with Friday’s normal blood panels, he’d run a few more random tests. One of which was a test for a certain type of protein which could indicate a tumor or cancerous cells. That number came back elevated…not dramatically, but enough to make him order an MRI of my abdomen next week. He said that most likely the inflammation in my liver is artificially increasing the number, but he has to objectively follow leads…which I totally understand. There will also be a few more tests coming back next week, which could lead to more tests.

At the end of the phone call, he reiterated that the overall picture is looking much better. He wants me to increase the amount of food I’m eating, be a little less strict with portion control, and not to worry about losing weight. He wants me to focus on balanced meals (which I am), and keeping up with eating protein. Dr.A also made me promise to text him over the weekend if I got too worried about anything, and to keep resting as much as possible.

I am so grateful to have a doctor who is willing to spend 35 minutes on the phone with me on a Friday night.

 

 

Categories: Family | 4 Comments

Learning to trust and rest…

 

My follow-up with my hepatologist (Dr.A) was yesterday, and it went fairly well. My liver numbers continue to slowly trend downward. It’s incremental, but there. The “big” number, or the number we’ve been watching for the last two weeks is down…0.3, which is just a tiny drop…but still a drop. It needs to go down another whole point before we hit “normal”. So, good news with my liver numbers.

However, there is a concern…my albumen levels are low and I’m losing weight quite quickly. In fact, I’ve lost about 10 pounds in a little over a month. So, Dr.A wants me on a higher protein diet (low carb), and he doesn’t want me to starve myself. Not that I have been starving myself, but I’ve been trying to eat smaller amounts. So, he’s bumping up how much I can eat, while still sticking to a specific diet (I’ll talk more about my diet in another post…because it’s intense!).

The biggest lesson I’m trying to take away from this experience (or at least right now), it the lesson of trust. I need to trust my body to heal. I need to trust the medications to work. I need to trust my doctors to know how best to help me. Trust is hard when dealing with medical things, or it is for me. So, at night, when I start feeling panicky or anxious…I remind myself to trust. My body, for all the danger it was in, held up and got me through some rough times. My body, a primary organ failing, was still functioning and healthy according to my numerous blood panels (seriously, how is that possible??). I need to trust my body to heal. My medications and blood draws are being monitored by arguably some of the best doctors in the state. I have my doctor’s cell number to text every time I get my blood drawn, so he can keep me informed (and not be waiting on results). My file is flagged, so if anything suspicious comes up, I’m called and given an appointment to see my doctor ASAP (or go to the emergency room…). So, I need to trust. Trust. Trust.

The other hard lesson here is learning how to really rest again. It’s hard to do that with two littles, but I’m under doctor’s orders to actually REST as much as possible. When I asked Dr.A yesterday what I could best do to help my health…he looked me straight in the eye and told me I need to just rest. Sleep, read, veg-out, craft, paint…whatever works for me. But, I need to rest, so my liver can start to heal. When I asked about exercise, he said to “rest” and not worry so much about that. He specifically told McRuger to make sure I rest. It’s almost shocking to hear how much he stressed that word.

So, tomorrow is another blood draw…a big one. Dr.A is rechecking several different tests and see if he can find some more answers. While I’m not looking forward to it (because I don’t need more bruising on my arms), I hope he finds some of the answers he’s looking for. Let’s all think good thoughts!!

In the meantime, I’m taking my meds, resting, asking for help (another challenge), and trying to trust.

Categories: Family | 4 Comments

Birthday Gratitude

Today is my 39th birthday. My last year of my 30’s…and that just feels crazy to write. And, while the last few weeks have been nothing less than turbulent, I am filled with a profound sense of gratitude. Of course, there’s the happiness at being alive and able to breathe! But, other things as well. This morning, I stepped outside into the pouring rain and just lifted my face to the heavens. What joy to feel those drops of water! I always love it when it rains on my birthday…hopefully a good omen!

But, back to gratitude…

I have a very supportive and loving husband, who will do just about anything for me. He’s taken on so much over the past few weeks, that it almost makes me cry. Every time McRuger rolls over to take the early shift with Pumpkin, my heart just is in awe. He’s taken on so much in the last few weeks, and done it with grace and strength.

I have two caring, rambunctious, and talented sons. Cadet with his kindness and energy, never ceases amaze me with what he does next. He woke up this morning and wanted to read my favorite Greek cookbook with me! Asking so many questions about honey, eggs, meats, grains…it melted me.  And, Pumpkin, who is so observant and smart…with a killer smile…well, he’s a heart breaker. He’s been “talking” so much recently and to hear him babble away as I’m doing chores is awesome to hear.

And, as much as I harp on my family, they took care of me while I was in the hospital. My mom dropped everything to be there for me. My father too, and while he got sick while I was still there, it killed him to leave me (he constantly asked if he was letting me down). Bro and Jewel used a ton of time and airline miles to get my father home safely, so my mom could focus on me.

McRuger’s family who has been praying for me, checking in on me, and keeping me sane with texts and calls. MIL has been here for a week, and will be here a week more. She’s been doing so much: dishes, laundry, cleaning, diaper changes…reminding me to rest or nap. And, she’s been doing it with no complaint and with a smile…sharing stories of McRuger when he was little or her own childhood.

AE, also dropped everything and rushed to the hospital. She spent two really long nights with me and helped me be an advocate for what I needed. And, when I needed to cry…she just held me. I think we both realized how much we are family to each other…and after almost 20 years…that’s how it should be. And, on the first night there, when I was being asked to fill out “advanced directives” and “living will” instructions…she sat there, a pillar of womanly strength, just being there for me.

I also have some amazing friends who started my own online support chat via FB. They gave me encouragement and prayers and love when I needed it. Even though they are all hard working moms, they took the time to really be there. Other friends on FB, who just take a few minutes to check in with me every few days…just to say they are thinking of me! I have all of you, who have commented and held me in your prayers and thoughts as I’ve been going through this.

And, even the smaller things…like amazing doctors and a forming care-team, who believe in me and my health. The ability to go to the grocery story and buy foods that are healthy for me: all organic veggies, milk, grains, fruits…a blessing. The will to cook well for myself, even if it means not getting to go out to dinner tonight or enjoying movie popcorn.  I have shelter, heat, clothes, and every little thing I could want.

My presents this year were practical: new slippers, new walking shoes, a smaller (more useful) purse, and a few books. All perfectly needed and timely. My other “present” was being able to run a few errands by myself this afternoon: the post office and grocery store. I was only gone for 45 minutes, but it felt nice to have a bit of alone time. Oh, and I got an hour nap too!

Tonight, instead of birthday cake we’re having  a yogurt, fruit, and granola freezer cake which MIL and I heavily adapted from a recipe I found. Dinner will be stir fry with green beans, kale, carrots, and broccoli…over quinoa. My treat was a little cheese in my breakfast quesadilla and a bit of butter and sugar in the “cake” (minuscule amounts compared to what I usually would use).

So, that’s what this birthday is about: gratitude…for all the things I normally take for granted. In fact, I’ve had a candle burning all day, just to remind me to appreciate the love of the world around me and the joy that I can take in the little things.

I hope you’re day has been amazing. And, as always, thank you for all the prayers, thoughts, and good wishes!!

Love and Light to you all!!

Categories: Family | 9 Comments

Bruises and Acne

As of Wednesday (1/13) at noon, I was discharged from the hospital. That morning, my IV line blew (a sign that my body was done with that!). My doctors were generally pleased with my lower-trending numbers and overall health. And while it’s great to be home…it’s also amazingly scary and overwhelming. And as the bruises from the IV and thrice-daily blood draws are fading…the acne from the steroids are taking over…

I now have a chronic disease. I’ll be living with it for my life. Changes are being made to help manage everything, but it doesn’t make the “chronic disease” part less intimidating. Autoimmune Hepatitis isn’t something small I can forget, it’s big. It’s my liver, for heaven’s sake…an organ which is intensely essential to living. And, if you don’t know everything your liver does for you, I suggest you look it up, because it’s kind of insane. Everything from blood clotting to hormone management to filtering…that’s the liver. And, if your liver isn’t working, it makes life much more challenging (as I recently discovered).

I’m only now starting to see how dangerously sick I was. When I relay my numbers to various doctors or nurses…I have heard gasps of surprise that I’m still alive. So, being back home, without the constant monitoring of the hospital staff, makes me a bit uneasy. I try not to worry about the things that could be going wrong. I know that my doctors wouldn’t have released me without being confident in my ability to mend on my own (and the medications, of course). I’ll have my first follow-up blood draw tomorrow morning (and again on Thursday)…plus the first of my weekly follow-ups in the liver clinic.

Mornings are a special challenge, because that’s when I take my meds. I take one medication 30 minutes before breakfast, and then a whole bunch of meds 30 minutes after breakfast. My steroid medication makes me jittery for about 4 hours after I take them, and then I sort of crash. Meals have taken on an almost religious quality. I need to eat healthily, but also mindfully and regularly. The list of foods I can’t eat isn’t long, but it covers quite a few categories.  Not eating leaves me jittery and weak, which isn’t good for working with the kids.

My energy levels are certainly not back to normal yet. Just going grocery shopping was a bit of challenge yesterday (and that was with MIL and Cadet). I can get really exhausted by just being around people (a very new thing for me). Today was the first time I drove my car, and I was surprised at how taxing that was. I can take a 2-hour rest in the middle of the day, and even then it takes me a while to get going. I understand that my medications  are taxing my system, but geez!

I need to exercise too, even if it’s just for 15-20 minutes. And balancing that with our day is a special challenge. We’re slowly trying to integrate all of this into our lives…especially while we have all this help (MIL, Iggy, and McRuger). I need to have an established rhythm before it all goes away and I’m a SAHM again with only sporadic support.

Anyway, blah blah blah….life is getting back to some semblance of normal, and I’m happy for it. Thankfully, McRuger is “on board” with all the changes I need to be making and is insanely supportive. Even Cadet and Pumpkin seem to be understanding as to why mama isn’t at 100% yet.

 

 

Categories: Family, health, Liver, Motherhood | 6 Comments

Near Death

I’ve been quiet, I know. With good reason, I suppose. I’ve been in the hospital for about 6 (going on 7) days now….with Liver Failure. Yes. Seriously. Acute Liver Failure. If you need a moment to process that, join the club.

The whole story about how I got here is a very long one, and one probably best saved for another time (when I’m not still in the hospital). However, I’ll give you the quick version: had horrible anxiety, saw my doctor, she thought I looked a little yellow, ran a few tests..and hey presto…I was sent to the best hospital in my area for liver issues. Basically, my anxiety and my GP saved my life.

To answer a few of your burning questions:

  1. No, I’m not in any pain…none…never have been. In fact, it’s one of the mysteries of this…that despite the fact my liver was failing quite quickly…I was never in any pain. Freaky. In fact, I have felt “normal” for the entire process (something that still amazes my doctors).
  2. Yes, I have a diagnosis: Autoimmune Hepatitis with an underlying condition of Fatty Liver Disease. It means a WHOLE bunch of changes to my lifestyle and quite a bit of change in our family rhythm over the next several months.
  3. While at one point, a liver transplant was discussed, it’s out of the equation for now (thankfully). Hearing “liver transplant” and my name in the same sentence was not something I was expecting…ever. And I’ll be happy if I never hear “liver transplant” again in relation to my name!
  4. My liver is taking its sweet time in showing improvement. While I don’t want to bore you with my numbers and all the jargon, this is taking a while. I’m on a cocktail of various drugs: immunosuppressants and steroids being the biggies. And, for someone who doesn’t like taking medication, this has been a big thing. I get two doses of my meds a day…it’s not fun, but it’s helping, so I endure it.
  5. My family (and friends) has really stepped up to help. My mom or best friend has been with me every night since I was admitted. My father and brother have been helping as well. McRuger’s family has had a prayer tree going for me…and lots of calls and messages. Several of my friends have been on hand for babysitting, carting things back and forth, meals…and the like. It’s been quite amazing to feel such love.
  6. My life is generally out of danger now…but for a while, it wasn’t. I had one doctor tell me that he didn’t expect me to live the night. But, thanks to the good doctors here, amazing health insurance, and a good deal of luck…I am not actively dying any more (more than anyone else, I suppose).
  7. McRuger, Cadet, and Pumpkin have been very well cared for in my absence. Of course, McRuger is exhausted from having primary-parent duties for 6 days, but everyone is alive and happy. MIL arrived today for 2 weeks, which will give McRuger a bit of a break.   His work has him on extended leave through next week, at least. Once his boss heard I was in the hospital and potentially dying, it wasn’t even an issue. It’s going to take a while for us to find a “new normal” and his boss understands.

So, those are really the big things. No one knows why this happened. No one can tell me when this roller coaster will be over. For someone who doesn’t drink alcohol, caffeine, or soda…who is not an IV drug user…who doesn’t abuse drugs of any kind…and who doesn’t go foraging for wild mushrooms…this kind of hit out of the blue. But, I have been reminded again and again (by people and experiences) that I am in the right place for the moment. And my doctors are committed to finding the answers…no matter how many rocks we have to look under.

It’s been pointed out to me by my mom and several others, that my worst fears basically came to pass: big sickness, away from my family, life in danger…and I’m still here. I’m still breathing and still thinking. And now, I need to just kick my anxiety out of my life…so I can make room for positive thinking and other changes that I need make.

So, if you have a moment…send out some healing thoughts for my liver. I’d appreciate it greatly. I’ll update you as soon as I know more.

Categories: Anxiety/Worry, doctors, Family, health, Liver, thoughts | 20 Comments

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