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