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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24 Weeks (With an Ileostomy)

As every IF and RPL lady knows, reaching 24 weeks pregnant is a milestone to celebrate because at this point your baby has a real chance at survival if you were to go into premature labor. Like your baby would a micro-preemie and would spend a solid 20+ weeks in the NICU–but at least they’d have a chance.

So I’m marking this occasion with my little LS. She is still kicking away in there! I have an anterior placenta (same as with BG) so I don’t feel her in the front very much, but often on my left side or the bottom of my pelvis. As I recall, BG was more chill than LS and I didn’t feel her moving as often. I do wonder if it’s because I drink 1 cup of coffee a day during this pregnancy and I only rarely had coffee with BG. But my heart tells me that LS is going to be more hyper and intense than BG, regardless of how much coffee I drink.

BG is such an easy and pleasant child, and I’m pretty sure the laws of the universe state that you don’t get two pleasant and easy kids in a row. I try to think on the bright side, that a kid who is challenging and pushes you out of your comfort zone can be awesome–that was me, always pushing my parents to see my point of view and get excited about new things (and being frustrated when they didn’t get it). I do hope I’m able to successfully cultivate two very different kids, if that is the case. My sister and I are very different and my own parents did not do a great job of meeting our individual needs and harmonizing us as a family despite our differences. I want to do better for my own kids.

BG is quite excited to meet LS and will put her face close to my belly and say “Hi baby! It’s your big sister! I love you!” And kiss my belly. Does it get any sweeter than that?! I think not. When looking at toys for Christmas, BG has already picked out some things she thinks LS should have, so I figure I’ll throw a few gifts for LS under the tree, even though it feels kind of silly…and a little scary… With all the loss I have experienced, I am naturally afraid of losing LS and I have the f*cked up but very common fear that if I start feeling and acting overly confident, the universe will take her to teach me a lesson. Logically I know that’s not how it works, but emotions are not logical.

I feel like I need to write an update about BG, but for now let me just put on the record that I love this kid with my heart and soul and I think she is an amazing little human and a gift to the world. She is such a loveable little kid, and I tell her every day that she’s a great kid and that I’m so lucky to be her mom ❤20181116_103728_Film1 XOXO,

MLACS

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

 

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

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

 

 

 

Aloha, Colon–Booked My Colectomy and Not Looking Back


So the obvious–I’m f*cking done being sick. Things have been worse the past couple of weeks, owing to our moving house (stress), my Stelara is wearing off (like clockwork), I lowered my Prednisone (down to 20mg), and the last f*cking straw–wait for it–I had the flu last week (just shoot me).

After a couple days of toileting 12+ times per day, mostly blood, straining (felt like my body was trying to expel my colon with brut force), dehydration, pain, weakness.etc. I called up my IBD Nurse and said “Listen up–I am well and truly ready to schedule surgery. Tell IBD Specialist she won’t need to have ‘the talk’ with me on Monday and we can just get down to business.” And I meant every word. Something in me just ‘clicked’ and I knew I was meant to have the surgery, and I felt relief and resolve to move forward.

So I met with IBD Specialist yesterday as well as the Colorectal Surgeon (CRS) and the Ostomy Nurse. IBD Specialist said “Just in case you’re interested, you could try Entyvio, Cimzia, or a clinical trial drug”, but I shook my head and said “Nope, drug therapy is not for me. I failed 3 biologics–they all worked but wore off too quickly because I metabolize them too fast, so drugs are not the answer”. Which IBD Specialist wholeheartedly agreed, and basically wished me well and sent me off to the CRS. I asked the CRS a few questions and made it known that I may look like hell *now* but I used to be hot, so minimal scarring would be ideal, as I aspire to be an athlete when I’m well again and to look good naked. I’ll get into the logistics of things in another post.

I saw the Ostomy Nurse, got marked where my stoma will go, and am now testing out a Coloplast mio bag. Testing the bag out is a game changer! Most people don’t but I think everyone should. It’s not bad at all–I forget it’s even there! Easy to conceal under clothing. BG thinks it’s cool. I was building it up in my head that it would be strange and awkward, but it’s not.

Of course then today my colon has been much better and I’m like “WTF colon–quit playing games” but I am still ready for surgery. Mr. MLACS only has to use a week of vacation and they’ll let him work from home the second week, so he doesn’t need to file FMLA. He and BG will stay in a hotel near the hospital (since it is a 2hr drive from where we live) until I’m released.

Ok so so so exhausted, but just wanted to let you guys know “the scoop”.

T-minus TWO WEEKS until surgery!!!

XOXO,
MLACS

September 27th, The Day I Legally Wedded Mr. MLACS Because I Needed Health Insurance

On this day, 6 years ago, I married Mr. MLACS in a very awkward wedding ceremony at a court house in a small town in the BFE. Now for the record, Mr. MLACS had already proposed in June and we had planned a spring wedding. But I was having a UC flare that wasn’t responding well to steroids, so my GI at the time was suggesting Remicade–and I had no health insurance due to working non-traditional jobs and having a pre-existing condition (UC). Remicade infusions were like $20,000. And Mr. MLACS had very good health insurance through his employer. So without any real planning or fanfare, we just did it. And then had a celebratory dinner at some chain restaurant. It felt kind of twilight-zone-esque.

We told only our parents, as I was determined that my disease would not ruin our “real wedding” in Hawaii. We mostly ignored that we were technically married. But it added a calm to our relationship, knowing we were officially stuck with each other.

We had our dream wedding in Hawaii in spring 2012 and I didn’t end up needing Remicade until a year later. And then it stopped working pretty quickly so I only had maybe 3 infusions.

Fast forward to present-day…

Yesterday was our “marriage anniversary”. And here I am, sick as a dog because I have the freaking flu on top of my flare getting worse again because I lowered my Prednisone to 20mg and the Stelara shot is wearing off.

I had called my IBD Specialist the day before to inform them that I am ready for surgery.

Yep, it’s happening.

I’m having a (most likely permanent) ileostomy in the near future. Will see IBD Specialist and my CRS on Monday and schedule the surgery.

I just can’t go on like this. Or if I can, then I don’t want to.

I’m sort of freaking out but Mr. MLACS has been cool as a cucumber, as though he is unphased. At first I wanted a more emotional reaction from him, I mean, this is a BIG deal. But now I’m ok with Mr. MLACS remaining neutral because then I can be a basket case knowing he can handle everything.

So here we are, 6 years of marriage and 7 years of being together, and I’m having my colon removed. I actually did not see this coming. But it’s ok. I’m as ready as I’ll ever be.

XOXO,
MLACS