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

 

 

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A Tale Of Two Boobs: The Finale

So for those of you who missed the first few installments of “A Tale of Two Boobs”, this is a series of posts about my struggle with breastfeeding. I felt this primal urge to breastfeed my BG, and I put my body through hell to make it happen.

Well now, 2.5 years later, I have finally weaned BG.

I haven’t nursed her at all in 3 days. It was time–I had only been nursing on my “business boob” for months, as my “casual boob” was never a good producer anyways. And the milk in “business boob” had been reduced to a trickle within the last few weeks. I don’t know why exactly, maybe my hormones shifting as I’m weaning off the Prednisone. Maybe the Stelara. But both BG and I were ready and in a good place to stop, so it doesn’t really matter what the catalyst was.

As I lay here with cabbage leaves tucked into my tank top (a trick to help dry up your milk), I can reflect fondly on my breastfeeding relationship with BG, without any tears. I’m ok that we’re done breastfeeding. I feel like “my work here is done”. Often it’s emotional for moms to quit breastfeeding, and after how emotional I was and how desperately I wanted to do it, you’d think I’d be heartbroken. But I’m not.

I feel relieved that weaning happened organically, and did not end in dramatics (as you know I am prone to dramatics). I’m grateful that my chronic illness didn’t dictate my breastfeeding relationship with BG–I breastfed her through all the turmoil during the past 8+ months of my flare. It would have been traumatic if my milk had dried up while I was hospitalized. This flare shook up my relationship with BG, and breastfeeding was one thing that I was able to continue to do for her even when I was otherwise incapacitated. It was our foundation.

I shared countless tender moments with BG while breastfeeding. I will always treaaure the memories… sitting in the rocking chair in her nursery, light streaming in, rocking for hours and just staring at her in my arms (propped up on the boppy pillow–we got more than our moneys worth outta that thing). I remember breastfeeding her under the trees on the beach in Costa Rica, while a mommy monkey and baby monkey played right above us, and the sound of the ocean lulled us to sleep. There were also lots of backseat breastfeeding sessions in the car–sitting in the target parking lot. And all the times BG needed comfort–when she was scared of a thunderstorm or in pain because she was teething–that I was able to comfort her by breastfeeding her. It was such a relief to me to be able to pop a boob in her mouth and instantly make her feel better.

It’s been such a journey. I didn’t really even want to breastfeed before BG was born–it just seemed so foreign to me. But from the moment they placed her on my chest it’s all I wanted to do, as a way to love and protect and provide for her.

Through excruciating nipple injuries and mastitis. Through a struggle with low supply and taking ALL the herbs and finally, Domeperidone. I have no doubt that all the antibiotics I took and the Domperidone contributed to my current flare. But I don’t regret any of it.

My BG is healthy as can be–only had a handful of colds and I nursed her through those. I know that my milk helped to build and support her immune system. I believe that she will be spared the autoimmune issues that I am plagued with. That’s priceless to me.

I really don’t think that everyone should struggle to breastfeed the way I did. Obviously, there are plenty of healthy, happy kids out there that were given formula. We as mothers have to follow our own paths and no two will be exactly alike. I never, ever want to make another mother feel bad for how she feeds her baby!

But for me, I am so grateful that I was able to breastfeed BG. I never imagined how difficult it would be–the amount of tears that I would shed as I struggled through pain, frustration, guilt and worry. I couldn’t fathom the amount of joy I would feel as I cradled her in my arms and breastfed her for countless hours…I wouldn’t trade a single second of it.

But it’s ok that we’re done. I still cradle her, carry her, hold her and rock her. She still falls asleep nestled in the crook of my arm with her head on my chest. We say “I love you” to each other 1,000x per day and we smother each other in hugs and kisses. We have evolved, but no love is lost.

XOXO,
MLACS

My Potterybarn Life

So of course the house won’t be finished on schedule. My gut instinct (and plenty of experience dealing with contractors) told me as much. They said it will be a “couple more weeks” and we can deal with that–but no more than that.

Meanwhile, I have been entertaining myself by shopping both online and in stores. It’s been quite a thrill! Mr. MLACS and I agreed on a budget and he has given me carte blanche to do as I please. I’m happy to say that I have been able to buy a lot of my first choice high-end items (potterybarn, restoration hardware, crate and barrel, west elm, williams sonoma, etc.) and then some lovely modestly-priced items as well (target, wayfair, hayneedle, home goods, etc.) and even some custom pieces from etsy and local artists.

But the “pièce de résistance” is my PB comfort slipcovered custom sectional sofa in “everyday linen”. I have always dreamed of having a potterybarn slipcovered sofa and I ordered exactly what I wanted–even upgraded to the feather down filling.

I also bought a PB leather recliner that I adore because it is very stylish, but it’s really for Mr. MLACS–mostly as a decoy so he doesn’t sit his greasy a** on my PB couch when he gets home from work or comes in from playing outside with BG and the dog. Mr. MLACS has been wanting a recliner for ages, so it’s win/win for both of us.

I see my facebook newsfeed full of fiery indignance about politics/politicians/social injustice/other very important things that I should be more aware of. And I wonder if I’ve truly become a shallow person, because I give no f*cks about any of it. None. I watch cartoons all day and sing songs and play playdoh and buy groceries and sweep up gobs of pet hair and cook dinner. But do you know what really inspires me??? What really matters to me???

My muthaf*ckin’ potterybarn sofa sectional. That’s what.

Sorry to disappoint you if you thought I was better than that. I’m not.

I have literally spent hours agonizing over which throw pillows to accessorize my couch with. HOURS. Who does that???

Me. I do that.

All the pinterest’ing and online shopping has been great because it keeps me off social media (I love/hate social media–mostly hate) and gives me something to look forward to. I feel giddy every time the doorbell chimes and I see the UPS/FedEx/USPS carrier making haste toward their vehicle, because I know that means there is a special delivery for moi! BG gets excited too and loves to open the boxes with me and reveal the “prize” (BG’s short for “surprise”) inside. It never gets old for either one of us.

I could sit here and wax poetic about all the faaaaaaabulous things I’ve recently acquired (the boxes of which are cluttering my foyer and the UPS guy has to wonder WTF is going on because I can barely open the door).

But let me also enlighten you about the current state of my colon.

I will see the IBD Specialist this Thursday (so 3 days from now). I need to discuss some things with her:

  1. I’ve still got this perianal fistula. Lately it itches a bit–is that good or bad? It doesn’t hurt though. And I’m still slightly incontinent (anal leakage). So I’d like to see one of their Colorectal surgeons and get their opinion. Also, I want to know if they will do a laser fistulotomy. And if they are capable of doing a colectomy laproscopically. Sh*t I should probably already have asked, but did not have the presence of mind to even consider until recently.
  2. The Stelara is working, but I worry. I just hit the 3 week mark post-infusion and I’ve read the half-life of Stelara is 3 weeks. I woke up today with a bit of blood and mucus. Is it wearing off already? Or is this a blip on the radar? My concern about it “wearing off” is legit IMO because I “failed” Humira due to my serum levels never accumulating to theraputic levels–because as IBD Specialist phrased it, my body “clears it too quickly”. So, like, maybe it’s clearing the Stelara too quickly? They have me scheduled to take my Stelara injection 8 weeks from the initial infusion, but they could move the Stelara up to every 4 weeks. My question is: what has to happen for them to give me Stelara every 4 weeks?
  3. I’m very determined to wean from the prednisone, and I’m down to 27.5 mg, but I was supposed to drop to 25 mg today and decided against it due to the blood and mucus. Frustrating.
  4. As my prednisone goes down my weight goes up. Isn’t it ironic? Prednisone was like dexatrim for me at higher doses. I lost almost 30 lbs. And now I’ve gained like 25 of it back. I feel much stronger physically and much sharper mentally, so I’m grateful for that and I would WAY rather be chubby than sick. But, it’s still disappointing to have a fat face from prednisone and now a giggly tummy to match. This is definitely something I have some control over and I need to go back to recording my food on myfitnesspal and making better choices. However, it’s harder to make good choices when I’m tired and sore due to prednisone withdrawal–the fact is that I crave sugar. I should probably see an endocrinologist regarding my hypothyroid and adrenal fatigue.
  5. I still want to start TTC soon and I need to know the IBD Specialist’s criteria for when it’s in the realm of possibility. I don’t intend to wait until everything is peachy and perfect, because that likely will never happen. I just want to safely muddle through a pregnancy before having my colon surgically removed–this doesn’t require me to be in full remission, as half-assed remission will suffice.

Ok that’s all for now because BG is peeved that I have not been catering to her this morning and I’m afraid she’s going to complain to HR. Gotta go.

XOXO,

MLACS

 

 

 

Unglued **trigger**

I called and thoroughly b*tched out both my CVS Caremark representative and CVS Specialty pharmacy (the people actually responsible for getting me my Humira). I was on hold for 40 minutes but I finally connected with the person who arranges payment and delivery, with overnight express shipping.

That night, Mr. MLACS flipped out on me for critiquing the way he was washing BG’s hair. He wouldn’t stop yelling and he said some hateful things–like basically I’m useless and need to STFU since he has to do SO MUCH more. If I could have divorced him right that instant I would have. He was despicable. Of course all this took place in front of our kid. Humiliating. I wanted to die.

Seriously, I wanted to die. I actually thought about it–that I am broken and ready to fly away. The Prednisone is really good at amplifying negative feelings.

He didn’t apologize. He kept telling me “What about what you did” but wouldn’t be specific (because I actually didn’t do or say anything mean to him. My offense was that I annoyed him). We went to bed mad, myself in tears.

We woke up and things were tense. He was smug and pretended to be chipper. That ate at me. We argued some more–I asked him to quit being mean. I was shaking. I went to do BG’s laundry.

And I came unglued.

I couldn’t stop shaking and crying. I ran to find my suitcases and I just started throwing things in them. At this time Mr. MLACS asked me “What’s wrong”, after he just finished telling me that he doesn’t care that I’m upset and that I deserve it and he’s not sorry. He came after me and I roared for him to stay the f*ck away from me. Every time he touched me I roared and pushed him away. Until I collapsed on the floor. BG didn’t see any of this but I know she heard.

The only person I hated more than Mr. MLACS was myself.

Mr. MLACS was clearly terrified. He had obviously thought he was playing some sort of game of wits with me. But no. I was so mentally and physically unstable at this point (day 12 of not eating, in pain, on corticosteroids), I had barely a shred of sanity to cling to.

And as I sat on the bedroom floor sobbing, I clung to that shred of sanity. But my dignity was non-existent. I wanted to die.

It hurts to write this. HURTS.

I was sobbing “Why couldn’t you just be nice to me? Why did you have to be so mean? I’m so weak. I have NOTHING left.” He had a look of remorse on his face, and he held me. That’s all I had wanted, for weeks–to be held and reassured. I wasn’t getting it from him. He was resentful. He felt like I was taking advantage of him by asking him to do his part and mine.

Why did I have to lose my mind before my husband could comprehend how I was struggling and show some compassion?

And then, the doorbell rang.

The Humira.

I was still shaking and freling like I was in the twilight zone.

But Mr. MLACS accepted the package and proceeded to open it and ask me what to do with the various parts. I received 6 Humira pens, and I needed 4 of them to come to room temperature so I could inject them. The others went in the fridge to be stored and used in 2 weeks.

I was nervously practicing with one of the practice pens the Humira nurse had provided–I had 2 practice pens, and BG had claimed them as toys. It makes me cringe (her playing with them).

Finally I decided to do it.

Mr. MLACS ushered BG away from the bathroom. And I pinched my skin, and pressed the trigger…

And it scared the sh*t out of me, I pulled the pen away from my skin, and the medicine ejected all over my bathroom.

Like, I should be the poster-child of what NOT to do with a Humira injection.

I was shocked.

I called out to Mr. MLACS and he and BG came running into the bathroom. I told him I needed him to do the injections. And take one of the pens out of the refrigerator to come to room temperature.

So he backed me up against the wall, pinched my stomach fat, took aim and fired…

It didn’t even hurt.

I looked over at BG though, and she lifted her shirt and used one of the practice pens to give herself a shot in her belly. She did it exactly right.

My heart broke into 1,000 pieces.

Mr. MLACS tried to reassure me that it’s no big deal to her. But it’s still sad and pathetic to me. Humiliating.

Mr. MLACS successfully administered the 3 remaining injections.

And we waited.

Oddly, I felt relief almost instantly. And over the next 24 hours my symptoms improved. I didn’t even need to take my Bentyl + Hydrocodone (for cramps/frequency) at all on Sunday. I had a couple blood-free toilet sessions.

But yeah, I knew it was too good to be true. My symptoms came flooding back in the wee hours of Monday morning. They are improved, but not to where I’d feel comfortable dropping my Prednisone dose.

I had emailed the b*tchy GI nurse and told her about the Humira. Told her I was on a liquid diet and had lost 13 lbs in 13 days. She’s all “Don’t expect too much, try to eat some solid food, try to drop from 60mgs Prednisone to 50mgs, yadda yadda”. Or, she said I can wait until my next Humira injections in 2 weeks, and then drop the Prednisone. I want SO badly to start weaning, but I can’t handle the cramps. They are so f*ing painful–debilitating. Like being in labor.

I told my Humira nurse that I f*cked up  my first injection (despite her thorough tutorial, practicing, and watching youtube videos). She was nice and have me a number to call for a replacement pen, and I called first thing Monday morning. Should be in the mail.

I have been lurking on online forums for Ulcerative Colitis, and I got some good info. I am concerned that I will flare when I try to drop the Prednisone. But I need to get off of it–it is the devil. So someone suggested adding an immunomodulator, such as 6MP or Imuran. I had heard of them but didn’t know anything about how they work. Turns out, they lower your white blood cells (thereby lowering inflammation) and could help quiet my immune system while I wean off Prednisone. They are also used to keep people from developing antibodies to Humira–once you have antibodies the medicine won’t work.

So I bypassed b*tchy GI nurse and sent a message to my GI doctor via the patient portal. I asked him if I should consider immunomodulators. I also asked that he give me another prescription for Hydrocodone, or refer me to a pain management specialist–I’m only taking 2 pills per day (5-325) and I split them in half to make 4 doses. So not a lot. But I can’t make it through the day/night without them. He’ll probably want me to make an appointment to discuss things, and that’s fine. But I wanted to write him so I might fully articulate myself.

Due to my medications, I’m hardly nursing BG. I’ve also been sleeping on the couch and letting her have the big bed to herself–works better for both of us because I don’t disrupt her, she doesn’t wake up and try to nurse at night, and the couch is pretty much the only place where I am comfortable. If I had my sh*t together I’d try putting her in her big girl bed. Due to my immune system being down, I have a cold sore, so I can’t kiss her. And I miss her. I miss feeling connected to my baby. I miss the cuddles and nursing. I feel horribly guilty for pushing her away right now.

I try to retain a sense of ‘normalcy’. I fed her a good breakfast. Got us both ready and took her to the little gym today. Fed her a good lunch (dinner I managed to cook last night). But I had laid down with her to nap, and I had to jump up and run to the toilet, which woke her up prematurely. And we were both grouchy. I let her watch 2 hours of Daniel Tiger until Mr. MLACS got home. I haven’t fixed dinner. I’ve just laid here on the couch with tears streaming down my face as I write this.

For the record, Mr. MLACS has been much more agreeable and now often asks me what he can do for me. I guess he just had to see how broken I am. Mostly I just want him to create space for me to focus on my needs. Not expect much or be disappointed. He is doing a great job being there for BG and the pets, and taking care of our affairs (getting things moving to rebuild the house) and all the mundane things–grocery shopping, dishes, laundry. I’d be completely lost without him.

I’m mostly lost.

XOXO,

MLACS

 

 

 

 

 

 

 

Happy Holidays!

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Hey ladies, happy holidays to you!

I think I’ll do bullet points because it’s a clusterf*ck of thoughts:

  1. Despite chronic illness and life struggles, I am the happiest I’ve ever been in my life.
  2. But f*ck, chronic illness is a b*tch. Do you have any idea what it takes to keep me going? My husband had to pick up a *garbage bag* of enemas for me the other day (3 month supply). I take no less than 20 pills per day–mostly medication + some essential (and pricey $$$) supplements. Then I use a medicated foam & a cream on my face. Oh, and mouthwash for my frequent mouth ulcers.
  3. My toddler thinks all this is “normal”. Like all the mommies have to take their medicines 20 minutes after breakfast and before bed, every day. Besides being frustrated that I have to go to great lengths to maintain fair/poor health, I am also disappointed that my daughter has to witness my struggle.
  4. While my health is always teeter-tottering between stable/crisis, BG’s health is outstanding! I do feel like I can take some credit for that, since I always feed her nutritious food and have continued to breastfeed her, even now at 20 months.
  5. I can add another ailment to my list–perinasal dermatitis. I didn’t know what it was and I fought it for weeks before going to my dermatologist. Now I’m on low dose antibiotics for several weeks *and* a cream, and I can’t have a sip of alcohol. Naturally, I had just made an amazing breadpudding and doused it with bourbon sauce, which I now cannot eat.
  6. My Ulcerative Colitis is mildly “flaring” at the moment. I have to make a trip to see my GI doc next week (1.5 hr drive each way). Dunno what he’ll want to do. Maybe Uceris? Can my poor liver and kidneys even handle another medication at this point?
  7. Me and Mr. MLACS go to see The Nutcracker every year, and we are taking BG again this year! I bought her a little pink ballet-inspired dress and real pink ballet slippers. She loves them! She loves to dance! I cannot wait to see what she thinks of the performance! Taking my daughter to The Nutcracker means everything to me–a dream come true ❤
  8. Our Christmas tree is up and I also decorated a colorful mini tree for BG’s playroom (adorable!). BG and I both love the Christmas trees and we plug them in first thing when we wake up.
  9. I found an awesome occassional nanny! This means I don’t have to ask Mr. MLACS to miss work every time I have an appointment. And we can have a date ❤
  10. BG is just amazing. Learning new words every day. Her imagination is growing too–more complex pretending. She loves to help. She is starting to show signs of potty-training readiness (hiding to poop, wanting her wet diapers changed). She is VERY into cartoons and is a HUGE fan of Daniel Tiger. While I think limiting screen time is important, I admit to sometimes letting her watch DT on loop–at least he’s educational–I actually use his songs to motivate BG. Lately she wants to cuddle and nurse a lot, and I relish these moments. I wrap her up in the softest blanket, cuddle her, kiss her head and tell her I love her over and over. I just can’t get enough of her, even though I’m with her 24/7 (still cosleeping).
  11. I am still scared to start TTC and my self-imposed deadline is looming near–I will see the new OBGYN in a couple weeks. Just before ovulation this month I got a touch of “baby fever”, but now that I’ve ovulated I’m over it. I’m actually glad I’m on medications that I can’t TTC while taking, so that buys me at least a few more weeks before I can consider it. I don’t want to lose what I have with BG–we are like peas and carrots. She is still nursing. I don’t want to push her away or neglect her if I have another difficult pregnancy. I worry, always, about the potential consequences of TTC/pregnancy/adding to our already perfect little family.
  12. It looks like we are on the verge of making some progress regarding our forsaken dream home–I hope! Fx fx fx.

I’ll be 37 years old next week. I can hardly believe it. And I cut off all my hair! It’s cute but so short I can barely put it in a ponytail–very different for me (and thus exciting). I feel like I’m starting to be myself again after PPA, which is awesome.

I miss a lot of our blogger sisters who have moved on after IF and loss. But for those of you still with me–Merry Christmas! May gratitude, generosity, and goodwill touch your heart and make you glad this season ❤

XOXO,

MLACS