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

 

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My 38th Birthday! Reflections On 37–The Sh*ttiest Year of My Life

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Hey! So it was my 38th birthday last weekend and we celebrated by taking a trip to nearby city. We dressed up and took BG to a “Teddy Bear Tea” at a fancy hotel, and it was cute but not as precious as I had hoped, probably because we had all been quite ill the week leading up to it. BG was on Prednisone, which made her nutty and she had lots of temper tantrums and meltdowns in her toddler fits of “roid rage” (which made me feel totally validated for my own outbursts while on Prednisone). But despite BG’s nuttiness, we all enjoyed ourselves at the tea and for the rest of the weekend’s activities, which included stumbling upon a winter festival, Christmas light displays, and culminated in a ride on The Polar Express train, which was really very charming.

While I planned all these activities in hopes of creating magical moments and memories for BG, these events/moments were just as much for my own fulfillment–it is my pleasure to be able to do all these things with BG. And I would have died to go to a teddy bear tea or the polar express train as a child–these weren’t options back in my day and even if they were options, we didn’t have the money (the tickets for these events are quite pricey and I’ve been planning this weekend since July). So yeah, I am living vicariously through my kid. I cannot wait to take her to The Nutcracker ballet this weekend (her third one) and I’m hoping she can behave herself! Last year was a bit hairy and she is WAY more difficult now, as she is nearly 3 years old and is becoming a bonafide “threenager”. But she loves ballet, so hooefully she’ll be captivated and remain in her seat for at least the first half.

So none of this has anything to do with the title, as my birthday weekend was all good and (mostly) drama-free. Except for we nearly missed the polar express train and had to run several city blocks to make it–but we made it! Crisis averted.

But here’s what:

It was a year ago that I started “flaring”. For my last birthday, I was bleeding, feeling like sh*t and desperately hoping things would clear up on their own, without any “extra” meds like Uceris or *gasp* Prednisone (the worst)…because I wanted to start TTC. I even filled a script for Crinone (progesterone)!

Bah ha ha ha ha ha!

Now here I am a year later, having been on Prednisone for nearly a year (I’m down to 10mg/day) . My colon is gone. I found out I have Crohn’s, not UC. I have a permanent ileostomy. And I can count on one hand how many times I’ve had sex this past year–definitely NOT pregnant!

It was the hardest year of my life–I don’t know how I managed to get through it. By the grace of God, I survived. I cared for my child. I cared for my sick husband.

I held it together.

Even when I had nothing left in me. Even when the pain and fatigue was insufferable.

I did everything in my power to get well, and when nothing worked I found the courage to have the surgery–even after Mr. MLACS’s sudden collapse (SCA).

I f*cking did it.

So yeah, it was THE worst year of my life but nobody knew that (except you guys) because I kept calm(ish) and carried on.

Thank God for BG, because she was my reason to get out of bed in the morning and do my best, no matter what.

Thank God for Mr. MLACS, because he was my rock.

I don’t know what the future holds but I learned something invaluable this past year…

I can handle anything.

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

 

 

 

Try, Try, Try, Try it Again (learning curve as an ostomate)

In the words of Daniel Tiger, whom BG loves to quote, “Keep trying, and you’ll get better! Try try try!” She will sing this song to me at the most frustrating moments–like when I’m fumbling trying to work the tv remote to find the cartoon she wants. Bless her heart.

Well this weekend was an exercise in futility.

I had FIVE bag blowouts.

Like as in, my colostomy bag leaked/fell off and I had to clean up a literal pile of sh*t.

Five times.

I was doing SO well for the first 10 days post-op, until Friday, when I started to have sharp pains on the right side of my stoma. The pains would come and go, and I found they were worse when I had any sort of compression on the bag. So I tried to wear slightly less restrictive underwear (which I tuck the bag into–these are not ostomy-specific undies, just high-waisted Wacoal briefs I bought at Dillard’s last week). On Friday I saw my home health nurse but didn’t change my bag until after she left. Lo and behold, I found my skin was pulling away from my stoma on the right side where I was having the sharp pains. I was freaked out because:

  1. There was “output” (aka poop) in the crevice and I thought it could be infected.
  2. I had no idea how to address it–there are literally thousands of different products and appliances and I have a bathroom full of samples but needed to google what they are even for and how/when to apply them. So I’m all up-in-arms because I was woefully unprepared for this when I decided to change my bag. FML.

An ostomate wants to be prepared to change their bag. You want to have all your products that you might need within arms reach, otherwise if you have to jump up and search for things with your bag off and your stoma decides to “output” then you have a mess and it becomes a stressful situation.

I tore through my boxes of samples and found some seals–these things are supposed to help you get a good seal around your stoma and prevent leaks. My thought was that I could use the seal to cover up the open wound/crevice on my right side of my stoma, to keep it clean and hopefully make it stop hurting. So I nervously molded the seal and placed a new bag on, and it seemed to do the trick. The next day we got up and collectively took BG to her Little Gym class, where I mostly sat while Mr. MLACS participated with BG. Then we decided to go to a pumpkin patch about a 1.5 hours drive from where we live. We all got ready and I was pleased that I had managed to coordinate our outfits in a fall theme of blue jeans and shades of gray and navy blue–hoping to get a cute family picture. We get inthe car and 5 minutes down the road…

BOOM!

I feel my bag fall off and a warmth in my pants…

So we pulled over into an empty parking lot and I proceeded to clean up the mess. Poo everywhere. Luckily I came prepared–baby wipes, hand sanitizer, ostomy supplies (new bag, scissors, adhesive remover wipes, barrier wipes, gauze), fresh change of clothes and a ziploc bag to put my soiled clothes in.

It probably took me 20 minutes fumbling around in the drivers seat, but I got myself cleaned up and the bag changed. Then exhaled a long sigh of relief. It happens to everyone at some point, and at least I was prepared–I almost walked out of the house without that extra change of clothes and the ziploc bag, but my guardian angel must have been looking out for me.

We went to the pumpkin patch and had an absolutely wonderful time! There were pumpkins galore and lots of fun activities for kids. The air was crisp and the sound of childrens laughter echoed off every tree and hay bale and corn stalk under a clear blue sky. Perfection.

Then we got back to the car and I noticed my bag…was starting to come away from my skin…and I had no more bags and no more clothes, and a 1.5 hour drive home.

F*ck.

I had read that some ostomates would use medical tape or duct tape to hold their bags on in a pinch. And here in the South there is a Dollar General store like every few miles, even on the country roads. So I held my bag on until we reached a DG store and send Mr. MLACS inside to fetch ALL the tape. And chocolate. Because post-op my body craves a lot of chocolate, especially in emergencies.

I quickly duct taped the perimeter of my bag and said a silent prayer that it would hold another 45 minutes until we arrived home, and stuffed my face with a couple Ghiardhelli chocolate squares as I squeeled the tires out of the parking lot.

Just before we reached the house, I felt the bag coming unglued and reached my hand under my seatbelt to try to hold it on a couple more minutes until we reached the house. Then I hobbled inside the house, shouting for Mr. MLACS to bring me a trash bag and a pack of wipes. It was another ridiculous mess. By the time I was done cleaning it up I was thoroughly exhausted and my nerves were shot. My peri-stomal skin was also thoroughly irritated from all the bag changing. Someone brought us dinner, which was absolutely delicious, and we started to watch a Harry Potter movie (in honor of Halloween) and I think I fell asleep on the couch about 5 minutes in.

Then I woke up at 4am, with ANOTHER f*ing bag leak.

F*CK. F*CK. F*CK.

It wasn’t too bad but I had used a different bag/flange and the adhesive made my already irritated skin red and raw, so I had to try to address that. I googled and decided to dry it with a hair dryer and put some stoma powder on it. The first bag wouldn’t stick at all, so I had to cut another one. But finally, I got a bag on.

I was exhausted and laid around all morning, but since Mr. MLACS cannot drive for 6 months since he had his defibrillator/pacemaker placed, I amthe designated “errand runner”. And we needed some stuff from walmart–namely a warm undershirt and tights for BG to wear under her minnie mouse halloween costume at soccer practice that afternoon. So I rallied and schlepped myself to walmart. Got BG’s stuff and a few groceries. Tossed in a bag of peanut butter M&M’s for myself. Got back to the car and…

BOOM!

Bag leak #4 was in effect.

This time, I didn’t freak out. I sat quietly in the drivers seat and ate my peanut butter M&M’s.

Got home and it was chaos because we needed to get ready to leave for BG’s soccer practice. Mr. MLACS got BG ready while I addressed my bag–this leak wasn’t too messy so it didn’t take me long to clean myself up. We went to practice and I took lots of pictures while Mr. MLACS participated with BG–I love soccer so I usually do it with her but not that day, and to be fair 12 days post-op is a bit soon even on a good day. Then we came home and again someone brought us dinner (so lovely being everyone’s favorite charity case as of recently–I certainly won’t refuse a home cooked meal). And again I collapsed on the couch, exhausted and frustrated.

Woke up on Monday morning to…

Bag leak #5!

This was a couple hours prior to embarking on a 1.5 hour drive to see my Colorectal Surgeon and Ostomy Nurse. My skin was still raw and I knew they would have me remove the bag again, so I didn’t try anything fancy, just slapped on a one-piece drainable bag.

We got to the surgeon’s office and my blood pressure–which has been low since surgery–was like 140/80. Clearly, I was stressed out. I asked the surgeon’s nurse if he would “fix it” (meaning sew the skin back to my stoma on the right side) and I was surprised when she said “No, probably not”. Like…what? So he would just leave me with this hole that is causing me leaks and potential infection? WTF?

The Ostomy Nurse came in and explained that the body will “heal its self” and she has seen the skin pull away from the entire stoma and nothing done to repair it. Apparently, this is not uncommon and is actually expected in someone like me because my skin is thinned and my ability to heal weakened from the long-term  high-dose Prednisone I’ve been taking since January. I was disappointed because I wanted my stome *fixed*.

Instead the Ostomy Nurse took a look at my peristomal skin and decided to use an anti-fungal powder in the red areas. Then she chose to fill in the crevice between my skin and stoma with a bit of stoma powder, followed by “caulking” around my stoma with paste, prior to applying a new type of bag–the Coloplast sensura mio flex two-piece drainable bag/base. She used Hollister Adapt stoma powder and paste, and Cavillon 3M barrier/adhesive spray.

I spoke to my surgeon and told him things had gone well up until these bag blowouts, which really makes me wonder if I’m cut out to be an ostomate or if I ought to consider the j-pouch. It is stressful to have peri-stomal skin issues and to live in fear of bag blowouts, on top of the other adjustments of life with a bag. The surgeon said it will get easier. I hope he’s right.

So far, I’ve gone 24 hours without a bag blowout since the Ostomy Nurse fixed me up yesterday.

I’m hoping to have a somewhat relaxing day at home with BG and Mr. MLACS, doing a bit of cleaning and I want to bake a banana cake with cream cheese frosting. Then we’ll trick-or-treat this evening.

And Mr. MLACS returns to work tomorrow. I’m not ready for him to go back, mostly because I just like having him around and also because I’m scared of him going back to work and being stressed out and something happening again–he collapsed at work, if you recall. He was working 12+ hour days and he wouldn’t tell them “No”. He has said he will advocate for himself and insist on shorter hours and will not stray from doctors orders. I’m still freaked out.

But you know you gotta “Keep trying and you’ll get beeeetterrrr! Try! Try! Try!”

XOXO,

MLACS

I Did It! I’m An Ostomate!

I had my surgery late Tuesday afternoon on October 17th, 2017. I woke up to find I have several scars, a stoma, and a colostomy bag, and I was…

Relieved! Happy! Ready to jump up and go live that slice of life I’ve been sidelined from due to chronic illness!

I’ve been walking, eating low residue foods, and emptying/applying my own colostomy bags. I’ve been conservative with my pain meds and I’m ready to bust outta here tomorrow!

Mr. MLACS and my uncle drove me to surgery and stayed there all day and into the night because they didn’t even take me back until 4pm or so. I told them they should at least leave and go eat some delicious food, since I was starving but couldn’t eat. I told them if the shoe was on the other foot I would totally ditch them to go to the thai restaurant around the corner. But they stayed close by and ate at the hospital cafeteria.

The surgery went well and only took 2 hours vs. the usual 3-4 hours. I was told my colon was one of the worst the surgeon has seen–that was validating. CRS said he believes pathology will reveal I have Crohn’s Colitis, but we won’t know until next week.

I have ordered lots of samples of ostomy bags and accessories, so excited to try some stuff out–I haven’t particularly like the first 2 bags I’ve tried, mostly because they are one-pieces and the one I have now has a filter that gets super messy and takes for-ev-er to clean (sensura mio one piece). I will have to try a 2 piece tomorrow, hate to irritate my skin by changing it so much but I’m uncomfortable with the sensura mio one piece. It’s going to take some trial and error to find what I like.

I’m on A LOT of corticosteroids and cannot sleep (it’s 2:30am) even on percocet. I’m also very bloated from the steroids and cannot wait to get back to my 30mg oral dose and start tapering! Before long (God willing) I’ll be down to just 2 pills per day + my supplements! That’s kind of amazing.

I feel SO MUCH better with the colon gone–there is a tiny bit left actually–but I’ll deal with that later and my CRS said it shouldn’t give me much, if any, trouble.

I want to train for a marathon. I want to clean my house all day and play with BG without having to lay down every 15 minutes. I want to go back to nursing school. I want to travel. I want another baby. I want to do ALL THE THINGS!

It’s going to take some getting used to, but I think I will make my own way and figure it out. Being an ostomate is part of my destiny, and I’m going to embrace it and be the best version of myself–even better than before, I think.

XOXO,

MLACS

It’s A Miracle!

Mr. MLACS finally started to sound like himself on Wednesday of this week, exactly one week after his SCA. His short-term memory is still recovering but he is otherwise the man I married.

He had a defibrillator implanted yesterday (Thursday) and did well, now he just can’t lift his left arm past shoulder height for 6 weeks.

I took BG to see him in the hospital on Wednesday and we brought him home today!

I brought super fancy donuts for all the nurses in the ICU and on the regular floor, to thank them.

But I didn’t get any donuts for us.

I have a good friend who is a fitness consultant to the military. She’s amazing. She made a nutrition plan for Mr. MLACS.

Now I’m trying to get myself ready for my surgery on Tuesday Oct. 17th.

I’ve got to get this colon out, I cannot take it any longer. I’m literally sitting on the toilet right now muffling screams, it hurts so bad. And the Prednisone is driving me nuts, I’ve got to get off of it.

I almost had to go to the ER this week because I spiked a fever of 102.3 on Tuesday evening and since I’m on prednisone I’m supposed to go whenever I have a fever and/or feel particularly bad. But I was so exhausted from being at the hospital already, that I begged the on-call GI to let me wait until morning and see if my fever would break, which it did. But I have felt weak ever since. And my incontinence is worse–I’m back to wearing depends 24/7, even at home when I’m 5 feet from the toilet. If I could rip my colon out myself, I would.

So please continue to pray for our family, that Mr. MLACS makes a full recovery and that my colectomy goes smoothly, without any complications, and that I heal quickly afterwards without complications.

XOXO,

MLACS

The Aftermath: Traumatic Brain Injury

I am grieving right now, because Mr. MLACS has come so far…but he is not himself at all. And nobody can say how much he’ll recover or how long this might take.

His voice is different. It’s weak and soft and I don’t recognize it.

His personality is flat. Like he’s stoned, but he’s not on any mind-altering drugs anymore.

His facial expressions are odd. He has this smirk/smile that he does at inappropriate times and it creeps me out.

He remembers A LOT, which is good–his long-term memory is quite good.

But his short term memory is very bad.

And he is delusional.

He imagines things happened that truly didn’t or sees things that aren’t there (ordinary things like he thought his tablet was on the table).

I gave him his cell phone last night and he hasn’t texted or called. When I go see him he doesn’t ask me how BG is or what she’s up to–but he says he does want to get home to her…

But I can’t imagine him being home like this.

I can’t handle it.

It scares me to death.

I can’t have him around BG like this. If I’m freaked out by the changes in him, I can only imagine what it would be like for a little girl.

And I can’t trust him.

So far he’s shown no aggression or sexual inappropriateness but I worry. I can’t help it.

I won’t leave him alone with her. I can’t.

I don’t want him driving anytime soon if ever, and I can’t let him drive her because what if this happens again?

I feel like his death is imminent. I am scarred and have PTSD from his heart failure in 2014 and now this apparent heart attack (though docs are not sure if it was a heart attack, as his heart went into v-tach and then v-fib).

I want to run away because I can’t take this anymore. I want to protect our daughter and shield her from this pain and future pain. It’s her pain that kills me–she doesn’t understand why her daddy is gone. And also she is out of her element because…

We just moved into this new house two weeks ago. It is big and feels foreign to me. It’s full of bad memories, of the fire that happened and now this. I hate this house. I want out. I want to move back home to the Midwest.

You know we just moved to the South a year ago in September. I’m not comfortable here.

I need comfort and familiarity. People here have been very nice and reached out to help but they are either aquaintances or strangers to me. I’ve never gotten used to living here–really the trauma of the house fire, me being sick, and Mr. MLACS’s job being so demanding has kept me from liking it here. It’s also very conservative and that makes me uncomfortable as well.

But Mr. MLACS is the sole breadwinner. His job is here. They will make acommodations for him. He has benefits–including life insurance that I would desperately need when he dies, and he is not elligible for private commercial life insurance, for obvious reasons. So to move, he’d really need to get a different job in order to keep his benefits.

Or, he could end up on permanent disability. I doubt that though, because his functioning seems very high–for someone who died 5 days ago.

People tell me to be patient, he will get better (though how much better is a mystery) and don’t think too far ahead…

Seriously, that is the worst advice. I mean I appreciate their faith and optimism but I need to re-route my family’s future and that starts NOW.

So many things to worry about.

I need to have my surgery so I can feel better and have the stamina to deal with all of this. Then…

I need to figure out what to do–go back to school for nursing? Become a real estate agent? I want to be self-sufficient.

Sell all BG’s baby stuff because it’s just impossible to even consider another pregnancy and child under these circumstances? This makes me want a sibling for her even more–someone to weather these times with her…

My sister is currently here caring for BG so I can go to the hospital and be with Mr. MLACS. It’s not perfect–she smokes cigarettes and I hate having that around BG. Also she is messy and I am currently very anxious and OCD. But I’m so grateful she came to be with us. And my aunt and uncle are coming when my sister leaves sometime this week. I have not spoken to Mr. MLACS’s mother or sister and do not intend to involve them, as we have not been in contact for 2+ years and I do not want them involved with BG. I did speak to Mr. MLACS’s brother though and I dont know when but he said he plans to come see him.

There’s more but to summarize, I’m in a very fucked up situation. But it’s going to be ok–I’m going to take care of myself because I have to and make sure BG has a magical childhood no matter what. I’m going to do right by Mr. MLACS but BG comes first and he would agree. I love him and he loves me, but she is our world.

I am doing my best. That’s all I can do.

XOXO,

MLACS