Happy New Year!

So Christmas was lovely but it seems like forever ago because SO much has happened between Christmas and New Years.

To rewind, Mr. MLACS flew into the  nearby city and we enjoyed a weekend of holiday fun there, including seeing The Nutcracker ballet (an annual tradition) and riding on The Polar Express train.

BG is at a *magical age* and she had started ballet/tap class in the fall. She LOVED The Nutcracker this year! I loved watching her watch the performance–she was riveted. We had balcony seats close to the stage and she loved being able to see the performance and the people in the audience below us. Mr. MLACS bought her a Clara dolly and a Rat King dolly and watching the two of them pretend to fight during intermission, hearing BG squeal and giggle, and feeling LS kicking in my belly is a moment I’ll never forget. BG looked so precious in her red and navy blue plaid dress, with her little pearl necklace–she looked like a real little lady. For the record, BG looooooves to dress up! Lives for dresses, bows, jewelry and “make ups” (which are lip balms). I wore a dress and make-up to The Nutcracker but I am generally a person who loves sweat pants, or for more formal occassions, jeans. I definitely did not spark her “extra-ness” because I am super low maintinence. But I do love to watch her shine ❤

The Polar Express train was really the best. BG was excited and bouncy! She was enthralled by the performances and the characters/actors invited her to participate several times. First, she got to help turn pages as a portion of The Polar Express book was read. Then, she got to be a reindeer–they placed an antler headband on her–and march down the aisle as we sang Rudolph the red nosed reindeer. But the most precious part, was when Santa stopped to say hello to her abd give her “the first bell of Christmas”. BG thought she was supposed to tell him her Christmas list, and she was so excited to see him she could barely get the words out, so I interpreted. She asked for “Toys for baby sister, toys for me, toys for Koa and Kitty, and toys for Mommy and Daddy”. She’s so sweet and thoughtful. And taking in her good intentions and her wide-eyed innocence, Santa turned to me and said “You’re very lucky”. And I know I don’t count my blessings on this blog very often because I mostly talk about the heavy stuff, but please know that I feel profoundly blessed/fortunate/lucky and that Santa didn’t have to remind me–but I was touched.

We returned home from our adventure on Christmas Eve and I was super sick with what seemed like the flu. I felt miserable. Luckily Mr. MLACS was feeling great and he got everything put together for Christmas morning–Santa brought BG a teepee playhouse and he got her a big-girl monogrammed chair and had a matching little-girl monogrammed chair for LS (since BG was adamant that baby sister needed gifts). Mr. MLACS and I each got each other one gift from ourselves + BG. It was sweet and funny because BG had watched a cartoon (Arthur?) and the kid was REALLY excited to buy his Mom a glass bird. So BG had decided I needed a glass bird, and Mr. MLACS went to great lengths to find and purchase a glass bird. I love it because it really shows how much we all love each other. BG and I gave Mr. MLACS cologne, which is what we always gave my Dad for Christmas when I was little, and it’s weird to be “the parent” now.

BG had some unwrapped presents and a stocking from Santa, and then 9 wrapped gifts under the tree, 4 of which were from my sister and the rest from us. I know she had a wonderful Christmas and that she got plenty of great gifts. But I cannot seem to shake feeling guilty that she isn’t showered by presents and attention from our extended family. I want Christmas to be special because we spend time together and make great memories, and not because of how many presents are under the tree. I genuinely feel that we–that our precious children–are better off without toxic family members in our lives (and that includes keeping my sister at arms length, although she does have a relationship with BG). But the holidays stir up my feelings and make me wish things were different–and I second guess myself. I miss my good old friends and wish we lived closer–it would be easier to accept the severed ties with our relatives if we had “framily” to spend holidays with. But all our friends are spread out and we move too much to really create a “village”.

I had a village though, in the town we just moved from. I didn’t fully realize how much some of my girlfriends cared for me until I had to say goodbye. And I felt sad to lose them, and bad for “abandoning” them since they were clearly more invested in our friendships than I thought.

The movers came to pack on Dec. 27th, they loaded on Dec. 28th, and on Dec. 29th we bid farewell to our dream home, and all the craziness of the past 2 years. Mr. MLACS and I shed some tears for what was and for what might have been. And then we journeyed for 3 days, and celebrated NYE in our new town.

Let me close by saying 2018 was a legit roller coaster of a year, with huge ups-and-downs. I worked hard to regain my health and fitness, while navigating life as a fledgling ostomate–I did it! I even put myself out there and became the leader of a fit moms club, got my friends involved, and met new people. I dealt with my Father’s death, my Maternal Grandmother’s death, and the absolutely maddening struggle with my sister over managing our trust. I started my own LLC and did grown-up stuff like creating my own will & trust and purchasing burial plots for myself and Mr. MLACS. I paid a lot of bills. We took a beautiful trip to Hawaii. I dealt with the constant fear of losing Mr. MLACS and dealing with his health scares. I did lots of stuff with BG and she started preschool and dance classes in the fall. We sold our house, and we moved a 17+hr drive North of where we lived. I’d say the most amazing and insane plot-twist of 2018 was we got pregnant quickly and without fertility treatments–now I’m 30 weeks pregnant with a healthy baby girl.

2018 was very trying, but I really feel like every bit of it was filled with purpose.

I wouldn’t change a thing.

XOXO,

MLACS

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Wow…second trimester already!

Hey guys, today makes 15 weeks! I had an OB visit today and her heartbeat was spot-on at 160-170 bpm. My belly has been expanding, but not like it did with BG–even though I weigh less now than I did with BG, my tummy is soft/squishy instead of hard. I presume this is because I have loose skin and, moreover, because I don’t have my colon (which was impacted due to taking Zofran with BG).

I loved my body/my belly with BG, but between my squishiness, scars from surgery, and my ostomy bag, I don’t feel very cute. I think part of my lack of enthusiasm for my “bump” is also that it’s my 2nd pregnancy and I have A LOT more on my plate–with BG, Mr. MLACS was gone 50% of the time, we lived in an apartment (now we are homeowners) and I didn’t have a toddler, plus it was a hard-won pregnancy, so I reveled in my ‘pregnant-ness’ and had lots of time and money to buy cute maternity clothes and take bump photos. I can’t be the only one–has anyone else found that their first pregnancy was all pinterest-y, but subsequent pregnancies were less so? I don’t want baby sister to feel less important or celebrated, because she is my little miracle and just because I’m not into *myself* right now is no reflection on how much I’m into her. I hope little sister understands and doesn’t take it personally. Because once she’s here, I’ll give her everything I’ve got just like I did for BG. Oh, and henceforth little sister will be referred to as LS.

So maybe you are wondering…how is pregnancy different with an ostomy? Well, first off, my ostomy bag covers the right half of my belly. As my belly grows and changes, I’ve had more challenges…

1. I eat more–a lot more–so my stoma and ostomy bags are getting a “workout” from all the food I consume.

2. My stoma is changing size. It has increased 2-3mm in diameter (so currently 28-29mm) and is protruding more.

3. Because my belly isn’t flat anymore, my stoma is changing size, and I am eating more, I’m having more leaks. In fact, I’ve gone from changing my appliance once every 4 days to changing it almost every day. And when I have leaks it irritates my peristomal skin.

4. I’m going to try different bases/bags to see if I can prevent leaks, and also because my preferred base only goes up to 35mm and may become too small.

5. My bag is much harder to hide under clothes. I had an easy time concealing it, even under skin tight clothing, prior to pregnancy/my belly growing. But now I can see my bag through almost anything I wear, tight or not. I’m frustrated about that. And between wanting to prevent leaks and also wanting to be comfortable, wearing compression garments is basically out of the question at this point.

6. I need to buy some new maternity clothes that suit my new body, but because I’m not into myself right now and I’m busy, I just haven’t made the effort. I really need to. I really wish I had a good friend here who I felt comfortable asking to go shopping with me.

So to be honest, having an ostomy has made pregnancy less enjoyable for me in some ways, as much as I hate to admit that. But I’m grateful to be healthy and moreover I’m grateful that LS is healthy, and that’s what really matters. The rest is trivial.

XOXO,

MLACS

 

Trying To Keep Calm and Carry On

I had a hard time getting to sleep last night, after googling “melanoma” and desperately searching for “benign growths that look like melanoma” and coming up with nothing–just pics of melanoma–so either people don’t post their “I thought it was melanoma but it was just an XYZ!” photos, or, anything that looks like melanoma IS melanoma.

I used to go to tanning beds and the beach. Often. And I’d cover up my face because my parents had skin cancer on their faces (around the nose and mouth) and had scars where these were removed. I didn’t want scars on my face. But skin cancer didn’t seem like such a big deal.

I was so stupid.

God I hope I raise BG to be smarter than me, to make better decisions than me.

I mean I hope I get to raise her period, but what if I don’t? What if I die while she’s still a child? While she still needs me? What if it’s because I didn’t wear sunscreen and went to tanning beds?! What if she thinks I’m awful for screwing up her childhood with my cancer treatment? A kid shouldn’t have the burden of worrying about her parents dying…

Mr. MLACS had a bad Cardiology appointment recently. I didn’t even blog about it but I had BG with us because it was just a check-up. Then they told us he had been shocked by his pacemaker on March 24th–his heart rate was 300bpm (I didn’t know that 300bpm was even possible). We had no idea. And then at the appointment his BP was 150/110 and his heartbeat was irregular. I went numb. We had no clue he was in distress. The color drained from both of us. We were panic-stricken. Mr. MLACS cried. And BG was fully aware that something was very wrong. Kids are very sensitive and intuitive. She had flashbacks of when he was hospitalized. And we were at the appointment for 3 hours. Doc said Mr. MLACS *must* lose 100lbs as quickly as possible (he has been slowly losing weight but not very regimented). He is 6’6″ and about 415lbs, and he needs to be closer to 300lbs to qualify for surgery to find the part of his heart that is malfunctioning and causing arrhythmias. Or if he needed a heart transplant he doesn’t qualify because of his weight. This appointment was April 22nd and since then Mr. MLACS has been working on his diet. We dropped $1,000 and he is getting a nutrition/exercise plan from an excellent trainer friend of mine.

So you see I’m already riddled with anxiety. My dad just died–both my parents are deceased. I’m stressed dealing with the estate (my sister). I am just 6 months out from having had my total colectomy and still learning to live as an ostomate. One of my good friends just had his big toe amputated due to melanoma.

And now I have this large, inexplicable black growth on my leg. I literally want to dig it out myself, I loathe it so much right now. I’m so freaked.

But instead…

I slept in (because Mr. MLACS knew I was up fretting about this melanoma thing). We went to home depot. I took BG over to play with the neighbor girls on their blow-up waterslide. I fed her lunch and put her down for nap. I’m trying to “keep calm and carry on”.

I’m trying So. F*ing. Hard.

I don’t want to alarm BG. And I don’t want to taint her life with my fear/anxiety/depression. Which is very difficult, since we are together 24/7.

I’m calling the dermatologist and being seen first thing in the morning, and no matter what they say I’m having this thing removed and biopsied.

But in between, I am trying to live, laugh, and love. I love my family SO much. I love my BG with everything I am. And if it’s cancer, I’ll fight. 20180417_095910_Film1.jpg

XOXO,

MLACS

 

Grief, Anxiety and Depression (and what I’m doing to heal)

I don’t know where to begin. I’ve been spiraling since my dad died.

I was just starting to get traction in my life after several years of of tumult. My health declining and autoimmune issues usurping my life and finances. Infertility and miscarriages. Mr. MLACS’s heart failure when I was 32 weeks pregnant. Being a new mother and deeply feeling the loss/void of my own beloved mother. Coping with Mr. MLACS being gone for work for weeks at a time. Overwhelming PPA (postpartum anxiety) and coming to terms with cutting off our toxic family members, including my dad (it took 2 years of weekly therapy and a lot of processing). Finally buying our first home–our dream home–only to have it burn down as we were packing to move. Moving to a very depressed area of Louisiana after the Great Flood of 2016, where I knew no one and felt like I didn’t belong.

Becoming ill and spending the entirety of 2017 fighting for my life with no support, because I was too sick to even ask for it. Feeling useless and hopeless at times.

Finally embracing the idea of a total colectomy surgery–having a prosthetic colon for the rest of my life. Finally about to move into my dream home.

And being deathly ill and having my husband drop dead at work, revived…but I am haunted by the way he looked and smelled like death in the ER. The nurses hearing me sob in the bathroom next to his bed in the ICU, as I sat on the toilet bleeding, desperately needing to be admitted myself but terrified to have my surgery because I was afraid I might die and orphan my child. My precious BG and my precious dog so sad and scared despite my best efforts to spare them the grief I felt. My heart was broken into a million pieces.

But I overcame everything. I beat infertility and I have the most precious daughter. I overcame PPA and came to terms with severing ties with my father. Mr. MLACS got a new job where he would be home every night. Our dream home was repaired. My surgery went well and I don’t need to take any IBD medications–I am not “chronically ill” anymore. My husband has a pacemaker/defibrillator and has taken responsibility for his health and lost a lot of weight. We moved into our dream house and I even bought my dream furniture.

I was making a comeback with my fitness, going to Burn Boot Camp and Barre3 classes and I volunteered as the organizer for a local moms fitness group–I was transparent about my ostomy. I was living my truth. I felt brave. I felt bold. I felt powerful. I felt beautiful. I felt like I was going to crush my goals.

And then my dad died.

And after everything I’ve been through–what I’ve overcome–and the fact that he wasn’t even a very good dad, you wouldn’t expect *that* to be the “straw that broke the camel’s back”.

But it was. I have been depressed and anxious. I can’t focus. I can’t think straight. I’m constantly waiting for the next shoe to drop.

I feel alienated from people. Lonely. Broken.

I’m angry because I fought SO. HARD. through the rock-bottom pit of hell that was 2017…

I had just started to feel safe. I wasn’t obsessing over the past or worrying about the future. I was living. I was embracing life. I was open to possibilities. I was all *positive vibes*.

But now I’m struggling again.

Dealing with my parents’ estate is torture. They were smart–everything was deeded to the trust. Every property, vehicle, trailer and boat. Nothing going to probate. Take heed and for all my IF friends who are parents now, make a will and/or trust so your spouse and kid(s) are not screwed when you die.

But my sister and I have never gotten along and now we are co-trustees and must divide everything in half. Meanwhile, there are 20-something properties that need to be managed and bills that need to be paid. And we have to fix up and sell “the big house” (our family home) to settle debts so we can dissolve the trust. It’s daily stress. It’s a daily reminder that both my parents are dead and that I am going to die. And BG is not tolerant of me being on my phone talking or texting, etc. She relentlessly pesters me and then has meltdowns when I snap at her. I can barely force myself to think about or do any of the drudgery associated with the estate, and with BG agitating me I feel like I might lose my mind. I need to put her in preschool and I have her enrolled in one but it doesn’t start until the fall. And I do not even have the stomach to vet preschools right now. I am looking at summer camps but that’s a week here-and-there. Oh and I dread having to take BG back to the midwest with me *without Mr. MLACS* to deal with this estate BS. F*ing nightmare. That is a 12hr car ride easch way, which I cannot do alone so I’ll have to split into 2 says–that is 4 days of travel. Just shoot me.

But I’m rich now. So there’s that. Not a “one percent-er” or filthy rich–like mansion/servants, car and driver, private plane and NY fashion week rich. But like, I will have a monthly income from my trust and it is legacy wealth that I can pass on to BG.

I’d give it all to have my Mom back though.

To have both my parents back, because our family was functionally-dysfunctional until my Mom got sick, which brought out the worst in my dad.

I’d give anything to be one big happy family.

I want peace in my life again. I want to feel like everything is going to be ok.

I am doing EFT tapping and trying to take care of myself, even though I don’t feel like showering or brushing my teeth or going to yoga or doing laundry or vacuming or anything. I’m sort of dead inside–dormant is a better word–I was starting to blossom but now I am dormant like a bulb in the winter. And I hate it.

So I am trying to claw my way out of this depression. I’m weak. I’m scared. I’m vulnerable. I’m confused. I’m frustrated. I’m emotionally drained. I’m distraught. I’m burdened. I’m defensive. I’m angry. I’m sad. I’m apathetic. I’m literally tied in knots and seeing a new chiropractor to try to unclench and untwist my poor body.

But I haven’t given up hope yet. And I’m trying to get better.

XOXO,

MLACS

 

Blunted. Muted. Faded. (Adrenal Fatigue after Prolonged Corticosteroid Use)

Terms which describe how I feel right now. I’m exhausted. I have alot of aches and pains in my muscles and joints. I’m cold all the time, and when I’m cold I can hardly move–it feels like a chore to get up from a chair and go to the next room. I’ve gained weight even though I’ve been eating healthier…

This is Adrenal Fatigue.

Post-surgery and a deadly fight with chronic illness. When does it get better and STAY better? Because I felt fabulous right after surgery…but then weaning off the Prednisone and pain medications revealed that my body is in rough shape and in no way back to “normal”.

It’s good that I’m off the Prednisone–my face has shrunk and I recognize myself in the mirror. My body now has a chance to recover from the damage the Pred did. But how f*cking long will it take to heal???

I’m tired of feeling like sh*t.

And I’m trying to help myself. Been eating more whole foods, way less sugar/processed foods, even though I crave sugar because *adrenal fatigue*.

I started going to the gym again, taking barre and power yoga and lifting weights. I only manage a couple days a week though, so I haven’t seen much results. I’m sore.

I started taking CW (charlotte’s web) brand CBD oil (cannabinoid oil) and it has helped me to feel somewhat better–it successfully weaned me off pain killers, as I was dependent on Hydrocodone (small amount, half of a 5-325 daily). And thank goodness because I have no way to obtain more pain meds at this time. Nor do I want to.

While I like feeling calm and not angry all the time (‘roid rage from presnisone), I miss having energy. I miss having intensity. I feel so lame now.

I read that it could take 12-18 months to recover from “moderate” adrenal fatigue. I really don’t have the patience to feel like crap for another year. I have an almost 3yr old to chase after. I have a house I still need to finish moving into and organize. I have a garage that is full of stuff that I need to declutter (sell/get rid of A LOT). I want to get in shape and look/feel amazing–I also have my 20th highschool reunion coming up in August. We might be moving again (Mr. MLACS is looking for a new position). And if I’m going to TTC, I have to do it soon because I’m 38yrs old already! Plus I want to do more with my life…

I don’t want to just feel ok, I want to feel *good* again. Soon.

XOXO,

MLACS

Resurrection

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“As the legend goes, when the Phoenix resurrects from the flames, she is even more beautiful than before”–Danielle LaPorte

In 2017…I lost my house to a fire, my health to Crohn’s disease (and subsequently my colon to a colectomy, my hair to Stelara, and my mind to Prednisone), and last–but certainly not least–I lost my husband to a SCA (sudden cardiac arrest).

Luckily, I got them all back.

My house has been repaired, my health recovered, and my husband resurrected.

And I lived through it all, with as much grace and courage and dignity as I could muster.

I have scars, both inside and out.

But I feel so proud of myself.

So at peace with myself.

Strong. Confident. Determined.

I have walked through the flames.

I will rise from these ashes.

More beautiful than before–not in vain–but rather, a beauty of essence. Of spirit. Of soul.

In 2018, I will emerge, radiant.

XOXO,

MLACS

 

MLACS Mash-Up

Hey y’all…

(I live in the South now so “y’all” is how they say “you all”…I still say “you guys” because I cannot bring myself to say y’all…IRL…)

I figured I’d update. But I’m exhausted so this won’t be interesting. If you’d like to skip it then cliff notes are: the MLACS family is doing just fine.

I actually feel worse now than I did directly after surgery. Why? Because I’m weaning off Prednisone, I’m down to 20mg/day, and I’m in *withdrawal*. My adrenal glands ceased function and let the Prednisone take over back in January of 2017. Now weaning creates a *deficit* in hormones (adrenaline, cortisol, epinephrine, etc.) which is supposed to “inspire” my adrenal glands to wake back up and start producing hormones again. Except, after being dormant so long, me being so sick, etc. the adrenal glands don’t simply *snap* back to life. Nope. That’s not how it works.

So here I lay, exhausted to my core yet unable to sleep properly. Anxious and feeling the urge to OCD clean the house and do ALL the things, but struggling to actually get anything done–and thus I am frustrated.

However sluggish I may feel, I have still managed to cook and bake and EAT quite a bit and I’m craving *sugar* due to my adrenal fatigue, so I feel crappy about eating all that sugar. And I’ve gained a few pounds instead of losing it like I had planned. But if you could only taste my gluten-free pumpkin bundt cake or my bread pudding with bourbon sauce–you’d know why.

Ironically, I am not cooking Thanksgiving dinner–we are going to a fancy brunch buffet at a Waldorf Astoria hotel–the menu is like three pages long and while it is pricey, kids under 3 eat free so at least we don’t have to pay for BG. I’m excited, but then also nervous because we have to drive 1.5hr+ and this is *the worst* travel holiday of the year and what if we get in a car wreck and die, all because *I* wanted to stuff my face at a fancy buffet???

This is how my mind works…

I also don’t know what to wear to this buffet because I need to dress nicely but also comfortably enough to eat my $85 worth *and* conceal my ostomy bag when it gets full. I’m considering taking closed bags (as opposed to the drainable I usually use) and just tossing them as they fill up. FTR, I’m currently using the coloplast sensura mio click and my base/flange is #10502 (I forget the bag #’s but those are less important).

My hair stopped falling out in clumps and is actually growing back (remember how I lost like 50% of my hair while taking Stelara?) which in theory is good but in reality I have all these 2 inch strands of hair sticking up all over my head and hairspray won’t tame them and not even a ball cap can conceal them–I’ve seriously considered getting a wig.

It’s hard. I want to look and feel *good* again. I want to look like I did a year ago *before* I got sick…in fact, I want to look better than that. I hate pictures of myself now. It’s pathetic–I need a family photo because we haven’t had our portrait done in 2+ years and Mr. MLACS just almost died, etc. But photos are expensive (for a good photog) and it’s a PIA to plan outfits, hair, etc. and most of all *I hate how I look* so I have not booked anything and it’s stressing.me.out.

Oh and because I’m absolutely insane I decided to host an open house on 2 weeks notice and invite everybody we know here. Am I having it catered? Am I having someone to come and clean my very *white* house? Of course NOT! I’ll be doing it all myself. Oh and I’m letting people bring their kids.

I know. I know. I’m already kicking myself.

So to change the subject, I saw my Colorectal Surgeon (CRS) yesterday for a post-op. I asked about the pathology report for my colon and I was not prepared…

It’s Crohn’s.

Without a doubt.

I really truly thought it would say UC. My disease never acted like Crohn’s–I got better when smoking cigarettes FFS!

The CRS said I can still have the j-pouch surgery but chances are I’ll have complications and eventually the pouch will have to be removed. I knew all of this already. I’m intending to keep my ostomy but I’m not ready for “barbie butt” yet. I told my CRS I really want to heal and then try to get pregnant.

Speaking of pregnant…

A lot of people (both my IF blogger girlfriends and ppl IRL) are falling pregnant and/or giving birth. I’m happy for you/them, but sad for me.

There, I said it.

I’m having the secondary infertility blues.

Which are NOT the same as primary infertility–my heart goes out to those who are dealing with primary infertility.

I mean, I haven’t even been able to *try* to conceive. So is it odd that I claim secondary infertility? I don’t think so…because lack of ability to get pregnant due to medical issues still adds up to *not pregnant*.

Ok gotta go, but I hope you all have a lovely Thanksgiving (to my USA friendsl and that everyone is getting in the holiday spirit.

XOXO,

MLACS