A Mixed Bag

So I should probably start with an update from my last post–I celebrated my one-year stomaversary on October 17th. I did not get a cake, but we were on “vacation” in my midwestern  hometown so we could enjoy fall weather (since it’s still hot in the south) and so I could handle some business with my parents’ estate/my inheritance. We enjoyed ourselves–I caught up with my old friends, and BG played with their kids and had a ball. We took our labrador and he enjoyed going to “puppy camp” (doggy daycare) a couple times and every morning we’d bring him scrambled eggs from breakfast (we stayed at a Staybridge Suites hotel as it allows pets and it provided breakfast, which was delicious). I enjoyed going to my old favorite restaurants to get yummy gluten-free specialties. And really, we’d love to move back there at some point because it’s a lovely town.

But there was some bad stuff too.

At the 9th hour of our 13 hour drive, I received word that my dear girlfriend had passed away of complications with her cancer. I knew she was terminal, but she had been just fine the day before and no one expected this. I was heartbroken that I didn’t get to see her one last time. I did join her husband and some friends to celebrate her life, but they were all drunk and disorderly (which is why I love them) and I had Mr. MLACS and BG with me so we didn’t stay long, as they were heading towards a collective breakdown. I didn’t make it to her official memorial and I know some of the crew found that offensive. But funerals are for the living. Jen knew I loved her. And I reached out to her husband to support him. I cried for her–she was a beautiful person.

Then, my sister was (as per usual) a giant passive-aggressive, manipulative pain-in-the-ass. She never misses an opportunity to make my life difficult and piss me off, then play the victim when I call her on her sh*t. She likes feeling like she has some power over me. It’s pathetic. And I’m sure our estate lawyer needed a drink after dealing with our quarrels last week–he will be so glad to be rid of us. I don’t envy him. We have one item left in the trust and then it will be dissolved and we won’t have to “work together” anymore as co-trustees.

And then, we took a 2hr trip to a nearby city to do fun stuff with BG in the afternoon and have dinner with a dear friend in the evening. But while we were riding the train at the zoo…

Mr. MLACS was shocked by his defibrillator.

He was sitting in the seat in front of me so I didn’t see his face, but I heard a loud crack and saw him fly back in his seat–I knew instantly that he’d been shocked…but I thought it was static electricity or a loose wire on the train…it didn’t even occur to me it was his ICD (pacemaker/defibrillator device implanted on his heart). He was in shock but he didn’t lose consciousness. I figured out what had happened and a wave of panic started in the pit of my stomach but BG was right next to me so I couldn’t react. I stayed eerily calm (which is how I am in these situations–I become automated). No one else knew anything was wrong and since Mr. MLACS was conscious I didn’t feel the need to call for help–I mean what could anyone do? I didn’t know what to do–the cardiologist never gave me any instructions.

So I sat there in shock, rubbing his back until we got off the train. Mr. MLACS was not feeling well but he could walk. We had promised BG to get her something at the gift shop and it was about to close so we ran in there and suddenly I knew I had to call his cardiologist and figure out what to do next. So I did that, and they said take him to an emergency room to be looked at. And I had to make a choice–go directly to an ER in the city *or* drive the 2hrs back to my hometown where the hospital has his previous records from his initial heart failure and drop him at the ER and take BG back to the hotel (because ER’s are no place for children or pregnant women). So I chose option 2 and just tried to stay calm. Mr. MLACS was floored. And blaming himself–asking “What did I do wrong?” It was heartbreaking.

So luckily BG fell asleep on the ride and I didnt have to explain why we were dropping Mr. MLACS at the hospital. While he got checked out, I started googling…and now I am PISSED at his cardiologist. Because *this guy* acted like the goal was for Mr. MLACS not yo have any more episodes. But from what I read, even the youngest and healthiest individuals with an ICD are shocked *1-2 times per year on average*. Mr. MLACS has been shocked twice this year, and both times we thought it was a crisis situation and that it wasn’t supposed to happen and I blamed myself–maybe he is too stressed and he needs less expectations and responsibilities, while Mr. MLACS agonizes over what he did wrong.

But the truth is, that his heart randomly malfunctions. The ER found nothing in his bloodwork. Nothing in his EKG. Nothing in his x-ray. His heartrate was perfectly normal (he was sitting peacefully on the train) and for no apparent reason he went into V-fib (a dangerous arrythmia). His heartrate went from 60bpm to 324bpm in an instant, his ICD device shocked him once on the lowest setting, and his heartrate returned to 60bpm as if nothing had even happened.

There was nothing we could do to prevent it. There is nothing we can do to stop it from happening again at this point. Mr. MLACS is dilligently losing weight so he can qualify for a surgery that will try to pinpoint the part of his heart that malfunctions to cause the arrythmia and have it ablazed (burnt so it quits wreaking havoc). But there are no guarantees.

I take solace in statistics–he is statistically likely to survive 10 more years. He could live decades–he’s young and most of the people with ICD’s are 60+ years old, so they skew the statistics. But I hate that we have to live in fear of the next “episode”. I hate how much pain/frustration/anxiety/guilt it causes Mr. MLACS. I hate that I need to teach BG how to dial 911 as soon as possible. I hate that I worry when he is alone with her or when he puts her on his shoulders–that she could be traumatized by witnessing an event or hurt because he fell while carrying her. I hate that I worry about Mr. MLACS driving and that I really don’t want him driving our girls–could I ever forgive myself if I allowed it and something happened to my babies while he was driving?

This is a heavy burden. All this fear.

But we have to keep living. We can’t let fear dictate our lives. Yes, we have to be dilligent and cautious, but we don’t have to be consumed by fear.

So I exhale and keep going.

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

 

Another Loss. More Grief.

My (maternal) Grandma Margaret passed away last week.

I am so DONE.

Now at 38 years OLD (I feel ancient) I have lost both my parents and all of my grandparents. I’ve nearly lost my husband, *twice*. I’ve lost my colon. I’ve lost my house to a fire. I’ve lost babies to miscarriage.

Sometimes I feel like I’m losing my mind.

My life is defined by grief and loss, grief and loss, and more grief…and loss.

I’m now paranoid that ALL the bad things are going to happen. Any scenario my anxiety-riddled brain comes up with seems plausible. I’m struggling to live in the moment while also steeling myself for the next bad thing to happen. Will my husband drop dead? Will he be home alone with 3yr old BG? Will I be lulled into a false sense of security, on a mundane trip to Target, and return home to a hysterical child and unresponsive husband??? Will it be my beloved labrador retriever? Will he develop cancer or kidney failure? Or God forbid…if anything happens to BG…I would swiftly take my own life.

I don’t like living in fear. I do the f*ing EFT tapping therapy to try to stay mentally and physically healthy. But about the time I begin to move on from one tragedy, the next one strikes. It’s like tidal waves of tragedy keep trying to drown me and I keep kicking to the surface but about the time the water calms, another wave hits.

Metaphorically speaking I feel about as desperate as Tom Hanks in the movie Cast Away.

And I have nobody to talk to about it, except you–my internet friends.

XOXO,

MLACS

It’s Benign!!!

Hallelujah! Praise the Lord! It was not melanoma, or any variety of skin cancer. It was a blood mole–I had never heard of such a thing and google is a b*tch for never suggesting it could be anything other than melanoma. In fact google took my paranoia to a whole new level by informing me that in men nodular melanoma is usually on the trunk of the body, but in women it’s on the legs! I almost had a brain anneurism.

Here’s how it played out…

I cried off/on all weekend and had visions of what treatment would be like, how my family suffer through the same painful process that *I* endured when my Mom was diagnosed with terminal breast/lung cancer. How awful it would be for BG to have to grow up without a Mom–would she remember me? Would any of the memories be good ones? Would Mr. MLACS die too and would my good friend and fellow blogger Steph Mignon have to raise my kid??? So. Many. Thoughts. I was overwhelmed by all these thoughts and feelings.

I had a hard time getting to sleep and when I woke up Monday morning I wasted no time–I was going to ambush my dermatologist and insist he cut this thing off/biopsy it, and let me know how screwed I was. TODAY. I didn’t even make my coffee (you KNOW it’s serious) I just got in my car, called the dermatology office, and by some miracle they had an appointment with my doctor in 30 minutes, which was precisely my commute time.

I sat on the edge of my seat as I waited, my body buzzing with anxiety. And when the nurse called me back and asked me why I was there, I tearfully told her I’m afraid I have melanoma on the back of my leg. She looked worried and gave me a gown to put on. I was in suspense as the doctor walked in and I quickly moved to show him the black growth on the back of my leg. And he said…it looks like a blood mole but we’ll take it off and biopsy it. A blood mole. He told me to call if I hadn’t heard from them by Thursday.

After rebounding from the fear of cancer and the revelation of a blood mole, I sheepishly asked him if he had time to do my botox. He did. So I left the office with a hole in my leg and a face full of botox–I haven’t had botox since before my wedding in 2012 but my 20 year highschool reunion is coming up, I’m 38 years old and I have the money, so don’t judge me, ok?? Thanks.

Anyways, I called Mr. MLACS to give him the good news, and decompressed on the way home.

But then as Thursday approached and I hadn’t heard from my doctor’s office, my anxiety started to build. What if…

I called early Thursday (yesterday) morning but no one called me back. I thought “This is a bad sign”… I cried. I rocked back and forth. And I called again…the nurse put me on hold and I thought “Oh God, maybe she’s getting the doctor so he can tell me the bad news…” But she returned on the line and said gingerly “It’s a benign mole”. BENIGN. As in NOT cancer. A wave of relief washed over me.

But lemme tell you, this experience made a profound impact on me. I am slathering BG with sunscreen, even on her ears, because *90% of sun damage occurs during childhood*. I mean I used sunscreen and hats on her before, but now that she’s a threenager it’s a chore, as we do lotion on the face/neck and spray on the body. But I make sure she’s covered because it doesn’t take long to get a sunburn and just 5 sunburns in childhood DOUBLES your kids’ risk of skin cancer. So fight the good fight with the sunscreen folks.

As for me, I diligently use sunscreen but I also cover up a lot with hats and rash guards (shirts made of SPF50 material), since I am somewhat allergic to the sun these days. But I used to blow off moles that looked suspicious–now I am on high alert.

I’m also writing a piece for a local moms blog cautioning them to be ready with the sunscreen and also to take care to have themselves looked over by a dermatologist annually and pay attention to their skin. I feel like this experience was my “call of duty”, and I’m on it.

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

 

Earth to Earth, Ashes to Ashes, Dust to Dust 💔

Last Thursday morning, Mr. MLACS woke me up around 4am to tell me my sister had tried to call me five times since 3am. I knew it was going to be bad news. Both my maternal Grandma and my Father had been in the hospital–but both were supposed to be recovering.

My Father died.

It was surreal. I sat on the floor of my bedroom closet so as not to wake up BG, who was sleeping in our bed. I didn’t cry, I just listened to my sister talk. He had prostate cancer (I knew this) but it was not very serious so they had not been treating it. However, they did a biopsy on it a few weeks ago and punctured his urethra in the process, which caused an infection. Once they realized their mistake, they then gave him the *wrong antibiotics*. As it turns out he had an E. Coli infection, and so the wrong antibiotics made it much worse. When they finally realized they had f*cked up royally, they admitted him to the VA hospital. He was so sick he didn’t even tell anyone he was going. My sister tracked him down, and visited him. He seemed ok. Nurses checked him at 2am–he was fine–they returned at 2:38am and found him dead on the floor…asphyxiated…

While it looks like gross negligence, I feel in my heart that he chose his moment and it was his time. His quality of life was not good. He was 69, morbidly obese with limited mobility, living alone, on the rocks with his girlfriend, and spent a lot of time watching tv and eating junk food. He was social on occassion, but far less than usual. He couldn’t see or hear well, and he couldn’t walk up or down stairs. A lot of his friends said they were surprised he was gone, that they had just seen him. But anyone with any common sense could see that he was declining and had a host of health issues/risk factors.

It would have been 4 years this month, since I had spoken to him. Except…

When Mr. MLACS collapsed and nearly died and I was having my colectomy in October, he sent my sister to my side, offering to pay her expenses, telling her to go and help me. An act of love and compassion.

I has sworn I’d never speak to him again. He was dead to me. He had caused me So. Much. Pain. during my Mom’s illness (which I forgave him) and then again years later during my battle with infertillity and loss. He was a crap father when I was young and proved incapable of having a healthy adult relationship. So I was done. The final straw was my child was born and we lived 15 minutes from him and he never even tried to contact me or see her. We moved to the South when she was 18 months old–by then I was so angry and hurt I vowed he’d never lay eyes on her. I threatened to cut off my sister if she so much as mentioned him.

But she had let me know he wanted to make peace with me, and then he financed her trip to help me this past October. So, I decided to call him and thank him in November. That was the last time I spoke to him. We communicated through my sister and I gave her permission to show him pictures of BG and keep him up to date on my little family. I was still very hesitant to reach out to him. I didn’t have the energy to forge a new relationship with him–I was struggling to heal from my surgery and Mr. MLACS’s cardiac arrest and moving into our house and being a wife and mother, etc. My sister did warn me that she didn’t think he’d be around much longer, but I was not going to be guilted or rushed.

And while yes, I wish things had been different, I don’t regret being distant from him. It wasn’t my job to make him happy at my own expense. It wasn’t my obligation to serve my daughter up so he could have his “grandpa experience” before he died. And I’m glad my kid was spared grief and loss.

As you know, I lost my dear departed Mother to breast/lung cancer in 2009. So I am an “adult orphan”. I miss her every day. She was amazing. She had a home daycare and LOVED kids…

I loaded up Mr. MLACS, BG, and our labrador retriever and drove all day Thursday, stopped for a few hours of sleep, and arrived just in time to meet my sister at the cemetary to pay for the portion of his burial not covered. In the process, I purchased the 2 cemetery plots next to my mother, where Mr. MLACS and I can be buried someday (hopefully many years from now, but God only knows).

We are staying at my family home and it’s both comforting and sorrowful. So many good memories of when we were a happy family before my Mom’s diagnosis in 2006 (albeit dysfunctional in our own way). When I see my daughter coloring at the same table where the daycare kids used to sit, and opening the gate to the downstairs where the daycare kids used to play…it’s just so unfair that she never got to be a grandma to BG. It breaks my heart. And she was the glue that held our family together, so if she was here I wouldn’t have fallen out with my father. We could have been one big happy family…

**I had to break down and cry here**

I grieve what might have been, but will never be.

And despite our differences, my dad was a pretty cool guy. He was a lame dad, but a pretty awesome person. My sister and I were under a tremendous amount of pressure to memorialize him and bury him with proper ceremony. He had literally been preparing us for his death since we were 12 years old. He was a successful business man and local bluegrass musician who lived and died in his hometown, so people were watching–most especially, the man himself, I was sure.

He thought it was best for person to be buried within 3 days of their death, so visitation was Sunday. I had a sitter for BG because 1. This was no place for a toddler, and 2. My Dad never met her so it felt wrong for any of his friends and family to meet her. Yet everyone asked me where she was, wtf?! Everyone knew we were estranged and it made the visitation uncomfortable for me, but I hung in there. I looked and acted dignified, as did my sister. It was sad and bittersweet to watch the memorial slideshow of all our happy moments as a family. They played one of his bluegrass cd’s he made of him singing and playing guitar…

Then finally the funeral was yesterday (Monday). Of course we have not had much sleep and not slept well, and poor BG woke up at 3am coughing so hard she vomited and burning up with fever. I had to send Mr. MLACS to get tylenol for her. I somehow managed to pull myself together and look nice for the funeral. I hated to leave BG with a sitter when she was not feeling well.

The service opened with his bluegrass buddies playing “Amazing Grace”–of course I cried. The pastor spoke and then I stood up and tearfully read what I had written at 3am when I was up with BG:

“My Dad was a passionate man. Passionate about life, and love. He was a man of leisure, and he had many pleasures. He enjoyed good company, and he was excellent company.

He was lighthearted, but soulful. He had a lot of corny jokes and anecdotes, but he would also wax poetic for hours, sharing his philosophies on life–he was deep. His definition of success, was happiness. And he was a happy, jovial man. If you asked him how he was, one of his standard replies was “I’m effervescing, my bubbles are all the way to the top!” He had a generous nature, and enjoyed treating people. He was always there for a friend in need, without expecting anything in return. He was diplomatic, and underneath his airy fascade, he was a very intelligent man. He appreciated his mentors and was himself, a mentor to a great many people. He liked to say “Those who can DO, can’t teach”, and he considered himself a “do’er”, but ironically, he was also a very good teacher. He would be proud to be remembered as a renaissance man–a man of many talents. Most prominently, a musician. The best time of his life was when he was living out of his car, playing music on the road with my mom by his side. He spoke wistfully of this part of his life where he had his passion–music–his freedom, and his soul mate. There are pitifully few people in this world that can say their dreams were realized, but my father was one of the lucky ones. He ticked every box on his “bucket list”, and more.
And that’s how he wants to be remembered. As a man of substance, who had an abundance of joy and shared it with the people around him. He is gone, but could never be forgotten.
Ashes to ashes, dust to dust. May he rest in peace.”
My sister said it was perfect and I’d said everything she’d wanted to say. Others agreed it was a good homage to him. My sister spoke, as did his best friend. The service closed with the bluegrass band playing “I’ll Fly Away” and we all sang along. It was just as he would have wanted.
And now we have the monumental task of dealing with the estate. My father was a smart business man and he left us a lot of properties. He was well organized, but it’s still a lot to deal with. I don’t feel like dealing with it, but I must. To his credit, Mr. MLACS has been invaluable in this process. I simply couldn’t do it without him.
Now I’m more terrified than ever that I’ll lose Mr. MLACS. He’s doing well but I’ve nearly lost him twice in the last 3 years, so it’s not just me being paranoid.
I love my hometown and want to be here to sort through the estate with my sister, but I long for my house in the South. Being here at my family’s home was precious for a couple of days but it is physically unconfortable (the guest beds suck) and emotionally draining–now it feels cumbersome. I’m completely exhausted. I’m overwhelmed. And both myself and BG are out of sorts and miss our “routine”. We have to interview and hire an estate lawyer tomorrow, and a few other things, but then I intend to leave on Thursday. I have been planning BG’s 3rd birthday party on her actual bday next Sunday, complete with a bouncy housw and goodie bags, etc. And I want to take a break from grieving and celebrate my greatest gift, my baby girl ❤

 

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

Screenshot_2017-12-31-22-43-35

“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

 

 

 

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