27w5d (And moving house)

Guys…

I’ve wanted to blog but just haven’t been able to self-actualize because I’ve been anxious and overwhelmed with all that’s going on.

Putting a house on the market and showing it *while you live there with a messy husband, a toddler, and 2 pets* SUCKS. We had to make it look staged, like nobody lives here. There is a loooong list of things we did to achieve this, such as removing everything from the kitchen counters (including my beloved keurig and the kitchenaid mixer), making the beds perfectly, putting away handsoap and toothbrushes (and anything on the bathroom counters, like my beauty products), and I was placing the cat’s litter box in the garage for showings and trying to make the laundry room look and smell good (this involved hiding the piles of laundry that usually pile up in the laundry room). I managed to make the house look like a dream–with cooperation from Mr. MLACS (recall, he was not cooperative to begin with). I have actually really enjoyed living in an immaculately clean, clutter-free house! Albeit, it’s a PIA to keep it up. And the master closet and the garage are *horrible* as this is where we stash and stuff all the crap we need to hide, but can’t seem to part with (I would part with it but I need time and energy to deal with it).

We put our house on the market and the first people who saw it made us an offer that we accepted, but it was *contingent* upon them selling their house. The market is slooooow here and according to our agent their house was WAY overpriced, so I wasn’t holding my breath that this deal would work out. We waited for more offers to roll in…

They didn’t.

But the people who initially fell in love with the house eventually agreed to drop the contingency this week, since their house isn’t selling. We were supposed to close Jan. 2nd, but they pushed it back to Feb. 2nd, which is fine. The house is sold! And I can keep my keurig on the counter again because I don’t have to worry about showings. I can leave dirty dishes in the sink and toys strewn all over the playroom. I am so grateful that we got the price we wanted and that we no longer have to pretend like we don’t live here, especially during the holidays.

Mr. MLACS had to depart for the new job up north on November 28th, so he has been gone for 18 days already.

It has been HARD at times, without him. I have felt very alone at times, because most of my “friends” here are people I have to keep up with and since I haven’t reached out much and they know I’m moving, I’m off their radar. Which I don’t begrudge them, because that’s just how it goes. But I haven’tt had much adult interaction with Mr. MLACS gone and thusly I feel like an island, adrift.

And thusly, my perinatal anxiety and depression hit FULL FORCE about a week after he left. I felt paranoid and anxious and angry–SO angry.

And besides “holding down the fort” while Mr. MLACS is gone, I’ve had to do all the research to find new doctors up north, which is VERY stressful because we need specialists and I am always on a mission to find the best of the best. Then I had to make phone calls to new doctors, phone calls to old doctors, medical records, etc. etc. While dealing with a needy toddler who misses her dad, and managing my own business.

Oh Good grief, and finding a place to live was also my task and it was made incredibly complicated by the facts that:

1. Mr. MLACS recently (and unbeknownst to me) defaulted on his federal student loans. I was SO angry because I am always on him to stay in good standing. He dropped the ball. So *after* I did a lot of work finding a realtor and working with a lender, I learned Mr. MLACS cannot qualify for any sort of loandue to his loan default and crap credit. I paid a bunch of collection accounts for him with my own money. I was (and still sort of am) PISSED that he was so irresponsible and he wasted my time and made me look like a fool to the real estate agent and lender.

2. So we decided we’ll take equity from the house when we sell it and just pay off his student loans. And we’ll rent for 6 months and then buy in the spring. Yes, I am *salty* that I have to move TWICE, once 7 months pregnant and then again with a newborn. But ok, I found a house. We applied. The guy comes back and says “Can you explain this eviction in 2016?” And I’m like “Pardon? You must have us confused with someone else because we have never been evicted.” But lo and behold, Mr. MLACS co-signed a lease in 2008 for his (now estranged since 2015) mother. And for no apparent reason, she was evicted in 2016 and Mr. MLACS has a judgement on his record, even though he declined to sign a renewal lease in 2009. We both think this was foul play on his mother’s part and the rental company, and we have our lawyer working on it. But meanwhile, it was humiliating for me to have to explain how my husband makes great money but apparently sucks at adulting so his credit is poor and he has an eviction on his record due to trying to help his sh*tty mother out (she took full advantage of him his entire life before I met him and I hate her for using her son–like how can you do that to your kid? I couldn’t). I finally found a place that would overlook all that, provided we did a double deposit.

And *guess who* has had to bankroll this move? ME. I shelled out $800 for Mr. MLACS to get new tires. $6500 for deposit/1st months rent. And I’ve had to buy all the groceries/gas/etc. since he left. While alone, 6+ months pregnant, caring for a toddler, and handling every detail of this move.

I don’t know if I’m allowed to feel resentful (because marriage is not always 50/50) but I do. Mr. MLACS has begrudgingly thanked me but has generally glossed over my contributions. Particularly the parts where I had to hustle because of his mistakes. He’s pretty much like “Sorry. What else do you wantbfrom me? I said sorry” But he doesn’t really mean it. If roles were reversed, he would be (and has been) totally degrading to me. But he clearly doesn’t hold himself to the same standards. And part of the reason why I haven’t picked a fight about it is because I worry about stressing him out because of his heart condition. And I resent having to worry about that too.

Oh and Christmas–I’ve done all of the Christmas shopping *and* paid for it all. I’ve bought things for the new baby. See, I have never minded doing all the work to create our life and our home because he has always been contributing the money. But now I’m doing all the work and paying for everything and he seems very comfortable with that but I AM NOT.

After this move I’m done using my inheritance to subsidize everything. I’m taking a break to evaluate my financial situation and figure out how to be smart with my money and what I can reasonably spend on our family. Mr. MLACS doesn’t want to give me any time or space, but it’s ultimately not his decision. I’ve been through A LOT these past couple of years, with his health crisis, my health crisis, deaths in my family, his sh*tty job here and now we are moving and I’m expecting a new baby. If he doesn’t show me the compassion and support me the way that I have showed him compassion and supported him, then I’m OUT.

Despite all this drama and bullsh*t, I am trying to enjoy the holidays with my kid. I adore the glow of the Christmas tree at night. I hosted a gingerbread house party for my favorite neighbor moms and kids. I planned (and *paid for*) a weekend of Christmas events when Mr. MLACS gets home for the holidays–we’ll see The Nutcracker ballet, ride the Polar Express train in our jammies, and see spectacular Christmas lights.

It’s my 39th birthday this weekend. And I bought myself a gluten-free cake from the frozen section at Whole Foods yesterday, so I can celebrate with BG. Mr. MLACS is really horrible about my birthday, in that he never surprises me or plans anything–not even a cake–without my input and effort. He just pays for things. For his part, Mr. MLACS did send me flowers yesterday and that helped soothe some of my resentment. He also bought me some La Mer beauty products but that was pretty lackluster because he ordered it because I told him about cyber Monday specials and was like “It’ll be here on Thursday”. Again, when he was our sole source of income I cut him a lot of slack and never minded too much when he didn’t make a big effort for my gifts. But at this point I would really appreciate it if he made more effort–I need more TLC, particularly since I’m pregnant. Just to show him how it feels, he had sent me a link to a pair of shoes he wants/needs that I had offered to buy for him as a gift, and I said exactly what he always says to me “There’s money in the account”.

XOXO,

MLACS

 

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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

 

Open Mouth, Insert Foot

Lately, all the people I talk to in the medical profession (mostly nurses), treat me as though I have never researched a disease I’ve had for 10 years. I don’t know what sort of idiots they’re used to dealing with, but I know a helluva lot more than they do–both from a scholarly perspective AND from a personal perspective. For example, one haughty NICU nurse said she had been diagnosed with UC a year ago. I asked what meds she took and she couldn’t even name them, but recognized them when I rattled off the different brands/types. She said “well it doesn’t matter because they’re all the same”. I didn’t bother getting into a pissing match with her, but she couldn’t be more wrong. The meds we discussed were all variations of the same ingredient (mesalamine) but they are NOT biologically equivalent–which is to say, that they are not all broken down, absorbed, and utilized the same in our bodies. Prime example: I was thrilled when I recently switched from taking 6 Delzicol capsules, to 3 Asacol HD tablets (twice daily). But the extended release meds I tried previously (Lialda) never worked as well for me, and unfortunately neither did Asacol HD, so I switched back to Delzicol this week and have seen improvement. This nurse also uses Canasa suppositories (as do I) but she crinkled her nose when I told her I’m using Remicade. Which brings me to…

ALL my doctors (particularly my GI’s) tell me to use Remicade while ttc and throughout pregnancy. ALL the boards I’ve consulted where women posted stories of their pregnancies while on Remicade and their children’s health afterwards have been nothing but positive. ALL the infusion nurses I’ve had have told me stories of Remicade patients who delivered healthy babies…

But on the flip side, all the nurses (both acquaintances and my infusion nurses) have this nervous, worried/confused look on their faces when I say that I intend to use Remicade during my pregnancy. What gives?! None of them have offered me a “cautionary tale” and in fact each of them can recall at least one Remicade patient that had a normal pregnancy.

Yes, I do read medical journals (not just google), and I’m not blindly following my doctors’ suggestions. Unfortunately (fortunately) researchers aren’t allowed to use pregnant women like lab rats, so there’s just not a lot of data available to support/refute the use of Remicade during pregnancy. So I have to base my decisions on the data I have, the severity of my disease, the experiences of other women who’ve used Remicade in pregnancy and my doctors (who are confident in prescribing Remicade to pregnant women).

So why are these nurses making me feel like I don’t know what I’m doing? Like I’m doing something wrong? I’m ok with every other ignorant “crunchy mama” telling me to quit the drugs, eat paleo and do yoga–and I appreciate everybody’s (judgement) concern, but honestly I expected nurses to be more (educated) understanding.

When I went in for my Remicade infusion today and told “Nurse Carol” that we are ttc, she said “but you’ll quit when you’re pregnant” and without hesitation I said “No”! And proceeded to fill her in on the details of my decision. I could tell she was a bit embarrassed about opening her big mouth–and she should be.

I admit that I’m pretty pushy with my friends, but even then I don’t advocate things if I can’t back my claims up with data and examples. I certainly don’t push my (medical) opinions on strangers! And knowing what a big decision Remicade is and that doctors (are supposed to) only advocate it when less invasive treatments have failed…knowing that a woman with an overactive immune system would rather risk the unknown and take Remicade, rather than lament the demise of her baby because her own (broken) body attacked her pregnancy…me personally, I would wish her well and keep my f*ing mouth shut. But that’s just me.

I Finally Found the Doctor of My Dreams (and now I’m moving)

Today I had my last appointment with my beloved GI, who I will refer to as Dr. Handsome. I first met Dr. Handsome in April, in the midst of my post-miscarriage health crisis. I had been misguided and bullied by my former GI doc, and I came to Dr. Handsome feeling beat-down, scared, and vulnerable—I really hoped that he would hear me out and see my point-of-view, and empower me to make weighty decisions about my treatment.
When he walked in the room, I was captivated: Tall, athletic build, silver hair, ice blue eyes, nice smile, and a friendly voice (hence the name “Dr. Handsome”). He immediately put me at ease. He listened to me nervously rattle on about my medical history, and he rolled his eyes (appropriately) when I told him about the crazy bullsh*t my former GI was trying to pull. But where he stole my heart, was when he shook my hand and looked me in the eye as he was leaving and said “We’re going to take GOOD CARE of you.” I get all teary-eyed just thinking about it—no doctor has ever said that to me before. I believed him.
Dr. Handsome had suggested Remicade at that first visit, but I was not ready to go to “big gun” meds, as there are risks and once you’re on it you will stay on it for years…most of the time it buys you 2-5 years at most, and then you have to look at other meds or surgery if your Ulcerative Colitis can’t be controlled. I didn’t want to be pregnant on Remicade. I didn’t want to have my colon out. So Dr. Handsome referred me to Cedars Sinai for a second opinion. At first I thought he was just trying to get rid of me because I didn’t want to take his advice, but when I said that to him he chuckled and said “Noooo, I’ve never fired a patient before and you ‘re a sweetheart! I genuinely want you to have the second opinion and Cedars is the best of the best.” WOW. Like, wow…I left his office with a smile. In the meantime, my UC got remarkably worse and I started feeling pretty desperate to get it under control.
After a couple of weeks of enemas that weren’t working and a mostly liquid diet, my patience was wearing thin. Then I learned that I have slightly elevated NK cells (which can affect implantation of an embryo) and I learned that Remicade helps to regulate NK cells. After a lot of prayer and soul-searching, I finally decided it was time to try the Remicade, so I went crawling back to Dr. Handsome and practically begged for it. I told him I just want to get pregnant and have a healthy baby. And he said to me “We are going to take CARE of you, and you are going to get pregnant and have a healthy baby.” I was so relieved, I cried.
I bought Subway for lunch for their whole office (20 people) to say “thank you”. What you may not know, is that doctors used to get lunches provided by the pharmaceutical reps almost daily (I worked for a Neurologist and the whole office got catered lunches at least twice a week). BUT there was a law passed in January whereby doctors can no longer accept these catered lunches from the drug reps. SO, if you are trying to get on your doctors’ good side (and really, you ought to butter-up his medical assistants and office staff because they call the shots) then food goes a long way, especially since this law was passed. Just sayin’.
After that, the office staff and medical assistants rolled out the red carpet for me! Now this was not my motivation and I didn’t expect it, but it is nice to have your calls returned promptly and to hear a bubbly voice that is happy to help you.
Anyhow, the reason I went in today wasn’t just to say goodbye. It was to ask Dr. Handsome how I should plan for the future of my disease (UC). We both agreed that I need to stay on Remicade (and all the other sh*t that I’m on) for now, and that it’s not time for surgery. For me, my goal is to hurry up and have a baby before it gets any worse. And then if it gets worse after I have the baby (inevitably it will) I want to seriously consider surgery. Fun facts about surgery:
1. I would have the J-pouch surgery. First, they remove my colon and fashion a colon out of my small intestines. While it heals, I’d have a colostomy bag. But a couple months after the first surgery, I would have a second surgery to re-attach everything. Presto!
2. After the surgery, I would be considered “disease free”!!! Did you know that Ulcerative Colitis is the only disease that is curable?! It is! Because once you remove the colon, it’s gone. No more meds.
3. I’d have more frequent bowel movements (like 7 per day). I could handle that, I think, if it meant no sickness and no more meds!
Dr. Handsome suggested that his preferred surgeons were at the Mayo Clinic in Scottsdale, AZ. He said I can always call him, and gave me a hug. I also got hugs from his medical assistants. They said come by and visit whenever I’m in town. I wonder if it’s because I brought them cupcakes today? Or maybe it’s the hilariously long and rambling messages I leave for them. In any case, I hate to leave them, but I’m confident that they are there if and when I need them. I feel good now that I have a plan for “what if”. God Bless Dr. Handsome.
***I brought Dr. Handsome and staff generic grocery store cupcakes. Normally (when I’m not in the middle of moving) I would go balls-out and attempt something pinterest-worthy, like the picture below.
WHOOOOO wants a cupcake?!!

Remember, the way to a doctors heart is through his staff, and they way to his staff is through their stomachs

Remember, the way to a doctors heart is through his staff, and the way to his staff is through their stomachs