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

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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

 

 

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

Daring To Dream

To recap my last post:

  1. I had the Stelara infusion a week ago and it is working–no blood in my stools and I feel better all-around.
  2. I’ve gained 10 lbs and lost a lot of hair since I started taking 6MP (mercaptopurine) a few weeks ago.

Well, I spoke to the IBD Specialist’s Nurse Practitioner via email (patient portal–so convenient) and she told me to go ahead and quit the 6MP. So I have not taken it the last 2 days and so far, so good–no blood.

Speaking of blood though, I am having my first *real* period in 6 months–it’s very heavy but not painful, just uncomfortable. It’s a good thing though, because it means my body has healed enough that it is willing to consider getting pregnant.

I was cleaning the guest bathroom yesterday and stumbled across some brown paper bags of medication, and I knew they were mine not Mr. MLACS’s, but I had to stop and think of what it was…??

And it stung me like a bee–it’s Crinone (progesterone to support a pregnancy). The Crinone I had bought and paid for back in December after I met my new OBGYN and expressed to him my desire to start TTC (trying to conceive) again. Just before all hell broke loose with my UC-turned-Crohn’s. I shelled out $300+ for this stuff, and I wonder if I will ever get to use it.

Mr. MLACS has been very flirty with me lately, and instead of feeling “blah” about it, I have felt more interested. I got a babysitter and we went on our…2nd?…date, just him and me, since BG was born (28 months ago). We went out to eat at a fun Caribbean-style restaurant–I even had half a glass of wine! I had been thinking about having a glass of wine and I finally felt good enough to try it, and I was tipsy but my liver appears to be worse for the wear. We talked about having a second baby, and we are both ready to try (Mr. MLACS is most def ready to resume our sex life).

We are actually in a much better position to TTC *now* than we were before I became ill. Before I became ill, we had no idea how we were going to get our (burnt to a crisp) dream home repaired. Our marriage was strained from the stress of moving to a place where we knew no one, our house burned down as soon as we signed the contract, and Mr. MLACS’s job was grinding him to the bone, leaving me alone with BG and to do ALL the things by myself. We were miserable. And *then* I got sick and that was the “stick that broke the camel’s back”. Things had to change, there was no trudging on the way we had been. I couldn’t. And at first everything got much, much worse. But when you hit rock bottom, the only place to go is up… So things have been steadily improving. Most importantly, our trials have made our marriage stronger. Well that, and I am not afraid of being unable to parent BG through a pregnancy and another baby, because I managed to do it through my illness. Plus, Mr. MLACS really stepped up and now him and BG are very close–she doesn’t need me as much. If you recall, he was away for work most of the first 18 months of her life, so we were all used to me being the primary caregiver, even when Mr. MLACS was home. But when I got sick, he had to take over and that was actually a good thing, because they have a very strong bond now.

So there are silver linings to my illness–we are stronger as a couple and as a family. We have had time to settle our affairs and we are going to move into our new home soon–we are finally out of the stress and the depression/funk we had in the wake of our house burning down. Mr. MLACS’s job has become a much less toxic place and new management is very “pro-family”, so he is home on time a lot more and a lot less stressed.

We are in a good place to have a baby.

I just have to wean off the prednisone before we can try. I’m going to drop from 32.5mg to 30mg tomorrow. I can’t imagine that my weaning will go completely smoothly–I’ll probably have to hold several weeks at various doses, pending my symptoms. But I am daring to dream that the Stelara will quell my immune system and allow me to wean off the prednisone, given patience and time.

Assuming I can straighten myself out, then we’ll *just* have to work on getting pregnant (ha ha ha ha ha–because it was SO easy–it *only* took 6 IUI’s to conceive BG).

I mean, everybody’s gotta have a dream, right?

XOXO,

MLACS

 

2013 Can Suck It (Take 2)

I just wrote the longest, bitchiest post I could possibly imagine. And I published it. And then I decided to un-publish it, because it’s slightly funny but mostly just insanely bitchy and I’m not doing you any favors by sharing it with you. So, it’s gone. But it was basically talking about how crappy 2013 was, and that is worth mentioning so I’ll list the offences of 2013:

1. Miscarriage: Feb. 25th, 2013. It was not a “missed miscarriage”. The bleeding started but an ultrasound revealed an embryo that measured within a couple of days of anticipated conception, with a heartbeat of 160bpm, at 7w2d. Yet (after a visit to the ER that night confirmed no heartbeat), it was dismissed as a statistic by my OBGYN, I was given Misoprostol to ensure complete ‘evacuation’, and told to give it a month and try again. Then I went on to have a chemical pregnancy on August 2nd, 2013 (there was a sac and if FELT worse than my prior miscarriage).

2. Chronic Illness: Ulcerative Colitis has worsened 10 fold this year. Post-miscarriage it was revealed that I have several other problems, including:

  • Hypothyroid (may very well have caused my miscarriage)
  • Lichen Sclerosus (an autoimmune disorder that causes the skin in my genital area to atrophy–it’s painful)
  • Elevated ANA’s (anti-nuclear antibodies–an indicator of Lupus)
  • Elevated NK cells (natural killer cells, which play a delicate role in implantation)

3. Horrible doctors (totally unsupportive and incompetent–when I was most fragile post-miscarriage)

4. Marital issues I’ve written about some of it in the past–it’s not easy to have marital problems on top of all this other bullsh*t in a town where you don’t know very many people and you’re scared sh*tless that you might be really, really sick. Oh, and you’re blaming your body for killing your seemingly perfect embryo and feeling desperate to figure things out to protect future pregnancies, while your husband tells you that you’re overreacting and wasting money. Things are different now, but they really couldn’t have been much worse for awhile.

5. Moving But not knowing exactly when or where. Mr. MLACS hated, absolutely HATED his last project. And he thought he’d get promoted to an upcoming project (a domestic job), but that did not manifest–he got dealt a lot of sh*tty hands this year. We decided to “abandon ship” and started looking at other companies, but no one could give us a solid offer with the pay he should command. We had to make a lot of hard decisions and in the end he chose to stay with his company and do a job in Canada (commuting), and we moved back to my hometown. But this process began in April ’13 and we did not know where we were going until August, then we moved abruptly in September. STRESSFUL. And for most of the summer I just felt frozen–I was watching life moving on around me while my own life was suspended in wait.

6. Finances Just when we think everything is going to be fine, something pops up. It causes us to fight and it caused me a lot of anguish on top of the other stuff I was dealing with. Part of it is medical bills, which is a bitter pill to swallow–first you have a medical crisis, then you find yourself in debt over it, often with no resolution. And I didn’t work–I went back to school to become a nurse and most recently I’ve been obsessed and single-minded about having a baby (which is getting expensive as well).

After our (practically immaculate) first conception in January 2013, I couldn’t have predicted that I’d be sitting here–not only childless–but not even pregnant a year later. I don’t think anybody would’ve predicted this–my doctors kept patting me on the back and sending me home until a couple months ago when I met Dr. Angel and we started IUI’s with injectables. I couldn’t have predicted any of what happened this past year. I was in a strange city trying to transition into a new phase of my life (motherhood), trying to build my (difficult) relationship with my husband, trying to forge my way to a new career (nursing), and trying to figure out WTF was happening to me and how to deal with it– all while fighting chronic illness and multiple miscarriages. I don’t know what I expected, but I was not prepared for what happened. I’m still traumatized. And, in fact, I think that I have gotten worse recently (in no small part due to the IUI hormones)–I’m fighting feelings of anxiety, anger, depression, sadness, insecurity, indifference, irritability…I’m quick to anger and I have NO FILTER (hence why I 86’d my initial “2013 Can Suck It” post). I don’t know if 2014 is going to see the resolution of the above listed grievances that I have against 2013. I could really use something to look forward to, but I don’t have anything. Yet…

 

 

 

 

 

Lackluster. But I’ll Take It.

Update**

I saw Dr. Angel yesterday (Friday) and my uterine lining was ‘7’–plus my follies were a lovely ‘14.5’ and ’14’ on the left ovary and the cyst on my right ovary is continuing to resolve–plus I got my HCG shot delivered via FedEx–plus I retrieved Mr. MLACS from the airport. However, it was a bummer having to inform Mr. MLACS that Dr. Angel said “no hanky panky” until after the IUI. Naturally, Mr. MLACS was rather disgusted at the thought of waiting 3+ weeks for his ‘welcome home’, only to be cock-blocked by our OBGYN. However, there is a ‘silver lining’ because there were 2 packages delivered yesterday: My HCG shot AND His brand new ‘Grand Theft Auto 5’ video game. So we both felt rejected–he ditched me for his video game. But that was ok, because I didn’t have any expectations since he’s been working every day for the last 23 days and had a long flight home. Even after rising early to go see Dr. Angel and driving 4 hours round-trip to fetch Mr. MLACS from the airport, I still managed to rally myself to do 40 minutes of walking at 3.6mph on the treadmill and some serious stretching–I noticed my muscles were more tense than usual…I’ve been wondering if I might have caught a cold…

When I woke up I realized that I do indeed have a head cold. Congested, slightly achy, throat sore from snoring/ breathing through my mouth (Mr. MLACS confirmed that I was snoring). I blame myself for not using hand sanitizer at every opportunity. But honestly I don’t mind, because if my (auto)immune system is busy fighting a head cold then maybe it will forget to attack my colon (Ulcerative Colitis).

Today I woke Mr. MLACS at 7am and dragged him with me to witness the follies/ uterine lining/ fancy chair/ dildocam. My husband is 6’6″, which I can only assume was the reason that Dr. Angel apologized for the dust on his ceiling fan when we walked into the examination room–because I certainly wouldn’t have noticed it (and FYI, I don’t think to dust my own ceiing fans until I see dust hanging off of them, so who am I to judge?). My uterine lining measured ‘8.5’; my two follies on my left ovary measured ‘16.5’ and ’16’; the cyst on my right ovary continues to shrink (hooray). I was happy with the progress and Mr. MLACS gingerly reached up and dusted off Dr. Angel’s ceiling fan as a courtesy before we left. We swung by Walgreens to pick up some OPK’s and Tylenol. When we got home I POAS–my OPK test line was barely visible so I’m nowhere near ovulating on my own (not a big surprise, because I usually don’t get a positive OPK until CD16 or CD17 and it’s only CD13 today). Hoping to trigger on Monday and do the IUI on Tuesday. Also, Dr. Angel had blood work done yesterday and I forgot to ask him about my Estradiol and TSH levels. *sneeze*sniffle* I have to be at Dr. Angel’s office tomorrow morning at 7am, and I’m hoping that Mr. MLACS will remind me to ask about my labs because my brain doesn’t function well at this hour–especially when I have a head cold. This weekend thus far is not the ‘romantic reunion’ I had hoped for; Mr. MLACS is playing his video game and I’m on the couch with my cat and my box of tissues blogging about my ovaries. Meh, sometimes life is lackluster, but I’d rather have good news tainted by ‘blah’ than bad news coated in ‘glitter’. XO