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

 

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

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

This is Adrenal Fatigue.

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

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

I’m tired of feeling like sh*t.

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

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

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

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

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

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

XOXO,

MLACS

Resurrection

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

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

Luckily, I got them all back.

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

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

I have scars, both inside and out.

But I feel so proud of myself.

So at peace with myself.

Strong. Confident. Determined.

I have walked through the flames.

I will rise from these ashes.

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

In 2018, I will emerge, radiant.

XOXO,

MLACS

 

MLACS Mash-Up

Hey y’all…

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

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

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

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

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

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

This is how my mind works…

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

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

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

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

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

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

It’s Crohn’s.

Without a doubt.

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

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

Speaking of pregnant…

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

There, I said it.

I’m having the secondary infertility blues.

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

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

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

XOXO,

MLACS

 

 

 

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

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