Reflections on the Past Week

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DH has now been moved to a rehab hospital. We are hoping that he is able to come home quickly, but for right now, we’re just trying to make the best of a bad situation. However, this illness triggers a lot of feelings about infertility and TFMR.

  • How could I have appropriately dealt with a disabled infant daughter AND a disabled husband? How would we have been able to afford this? I’m not just talking about medical expenses (we hit his out-of-pocket maximum on day 1 of ICU care), but I’m talking about the time off work. We have no idea how long he’s out of work, and the idea of living off of just my salary is frightening, even now. Luckily, he has disability insurance, so we’ll be getting 60% of his income in another week, but I have no idea if that will be enough to cover the bills. Yes, we stopped doing the IUI’s, but we did just buy two new cars.
  • Thank God we aren’t doing IUI or IVF. There’s no way we’d be able to do it this month anyway.
  • Many of the conditions that he’s dealing with are conditions that my daughter would have had to deal with. Ataxia. Paralysis. Pain. You get the idea.
  • I don’t trust the medical system. We have to be aggressive for his pain meds, and we have to constantly repeat, examine, and correct his medical records. The hospital originally had him scheduled to be discharged to a psychiatric unit! And this is for an adult. As protective as I am over him, I don’t know what I would have done if they had screwed up on my daughter’s medical care.

Also, the arguments over the Affordable Care Act are starting to trigger me as well. I really don’t give a damn about my doctors  asking me about my sexual history (isn’t that what doctors are supposed to do? Especially OBGYNs?), but some people seem to think that it’s too invasive.

Invasive? I’ll tell you what’s invasive. Invasive is feeling obligated to bring up your medical history to the Texas Senate to try and convince them not to place unnecessary restrictions on women’s healthcare. To be ignored like that after I told the most personal details of my life was more humiliating than any medical procedure I’ve ever experienced, including transvaginal ultrasounds.

I can’t stand to watch the news. I skim past updates on Twitter, because I take it all too personally.

I feel like I’m dealing with it all as appropriately as possible, but it’s still stressful.

I have so much more to say, but this was just a quick update to reassure people that things are progressing and that I’m ok. I have to get ready for the week – I have to grade and lesson plans and take care of the house, but all I really want to do is just make sure that he’s ok.

Out of ICU and into Rehab

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Ok, Universe.  I get it. I’m strong. Can you please stop testing me?

DH does indeed have Guillain Barre Syndrome. I’m not going to into it in detail here,  but he just spent four days in ICU. The good news is that he seems to be recovering quickly (in GBS standards,  that is).

He’s in a regular hospital room tonight and is getting sent to inpatient rehab. We don’t know that will be,  but it could be as long as two weeks.

Now that I’m not terrified that he is going to die,  I’m scared of how we are going to handle the bills.  Luckily,  be had disability insurance,  but it doesn’t kick in until he racks up two weeks of unpaid leave and is only 60 percent of his salary from November,  so it won’t include his most recent raises.

I don’t like being home alone,  and that’s what’s going to happen for two weeks. 

My friend S. and his wife came by with the baby on Sunday to bring my breakfast.  You know,  the baby girl that was due a week after mine. And I held her.

I went to counseling on Monday,  and she seemed to be overwhelmed with the fact that I had ANOTHER issue on my plate.  I handled it well,  though.  Better than I handled the previous week. I feel like I need a part solely devoted to that issue in the near future.

I’m exhausted. I’m tired to my core. Not sleepy tired,  I just want time to stop for a few hours so that I can breathe and catch up with everything in my life.
I will say that I’m glad we aren’t doing ivf after all this. Honestly,  with the paralysis,  I don’t even know when he will physically be able to bd.  Obviously nothing has happened the past two weeks,  and nothing is going to happen for the next two weeks in rehab,  but I don’t even think he could perform even if he wanted.

I’m trying to focus on the good news: blood pressure is under control. Heart rate is good. Breathing is good. Physical therapy had started.

Ugh. I have a cat in my face. I can’t continue.  I’ll write more later.  🙂

Back in the ER

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After the paralysis worsened,  and he started having trouble swallowing and breathing,  we went back to the ER.

I’m currently trying to distract myself while he gets a lumbar puncture,  more commonly know to the general public as a spinal tap.

We’ve already had the cat scan,  xrays, and another ekg.

As of right now,  the doctor suspects guillain barre syndrome.

Looks like they are going to admit him regardless of what the spinal fliud says. We should get results within the hour.

I’m tired,  hungry,  but most of all,  scared.

Memorial Charm… Finally

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I’ve known for awhile what I’ve wanted to do to honor my daughter’s memory, I just haven’t gotten around to doing it. Perhaps it’s been a bit of denial? I don’t know.

But planning my craft room has motivated me. I’m going to pick up soldering again so that I create the perfect memorial that I have in mind: a soldered charm.

On one side, I’m going to have her footprint. On the other side, I’m going to have our thumbprints in the shape of a heart. I think maybe I’ll even have a garnet bauble or another charm hanging from the bottom, but I’m not sure yet.

Of course, all of this is speculation at this point – I really need to practice before I even start to make what I have in mind. I mean, how horrible would I feel if I started making this and it ended up looking like crap? I have plenty of time to practice.

I stopped soldering because I didn’t want to breathe in fumes if I was pregnant. Yeah, I was always the optimist. But now, I don’t have to worry about that! I can sniff all the metal and lead that I want!

I’m a bit of a perfectionist however, so I think I want to get practicing as much as possible. I’d like to have something by January 2nd, but I’m not going to push myself.

Hiding from the World (just for today)

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So, we have an appointment with a cardiologist Monday and a neurologist on Tuesday. I have counseling on Monday, and I need to see if DH wants to come with me. He said he did, but that was before all of these other doctor appointments.

I went to work today, and I just felt like a shell of my former self. The person that I was four years ok. I haven’t found any joy in teaching. Those who know me personally know that my classroom was my hobby – I had FUN finding and designing new lessons. Now, I feel like my spark is smoldering. I feel like my classroom is just dead, wasted space. I let a class finish a movie today (that they started while I was out) and we had about twenty minutes of dead time after the movie. Usually, I’d have a great filler activity that would be fun and meaningful, but not today. I just sat there with them.

I cried after work today. Co-worker came in and let me sob for a bit, but I feel like such a loser. No one else has crying fits on campus like I do. Maybe I’m just being too hard on myself. Maybe since I’m so entrenched in this drama that I can’t look at it objectively and realize that this really is a seriously shitty situation to be in.

So, I’m planning on turning the nursery into my room. I want to have a place to sew, solder, write, and grade. I think I want a bright bohemian look, influenced by Hindu weddings. I want a small spot for a shrine of sorts for Akhilandeshvari, and I just want to make it a place where I can feel comfortable. I’ve been avoiding that room since December 26th, and I want to reclaim it, make it mine. Maybe this would be something that I should hire an interior decorator for? I really suck at this sort of thing – I know what I like, but I can’t visualize. I have to see pictures.

I made an appointment to get back on birth control. It’ll probably be the Nuva Ring unless I’m too old for it. DH and I talked about more permanent measures, and we aren’t ready for that yet. I do think that the endometriosis is back, so even if we aren’t ever going to to TTC again, I don’t want to deal with pain during sex, bowel problems, and lengthy periods.

God. I’m still in a small state of denial, thinking that maybe I’ll get pregnant one day, or at least have a baby. I’m starting to think wild thoughts, like maybe my sister-in-law will get pregnant again and I can adopt. Or maybe she could be a surrogate for us since it’s cheaper in the UK? Maybe they would even cover it under NHS since DH is a citizen? Like I said, crazy thoughts. I feel stupid when I write them down like this.

It’s pouring outside. Maybe I can talk DH into getting take away and visiting his mother tonight instead of just moping around the house.

Tired.

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AF is here, so Talk Like a Pirate Day officially marks the beginning of my childfree life.

The big news is that DH has Bell’s Palsy. We still have more testing to do,  but at least we know he’s not having a stroke anymore.

I took today off to be with him as well since he is having an adverse reaction to the drugs, maybe the steroids, but I’m not sure.

So,  we are making appointments with a neurologist,  a GP, and a chiropractor today.  He has xrays, but he needs an mri. The doc yesterday seemed to think the palsy was triggered by something in his neck rather than an infection.

I’m just exhausted, sad, and numb.

While it’s nice to have a name of something (that’s not dangerous or fatal),  I’m still worried about what we’ll see with an mri. Maybe I’ll be doing my blogging from Caring Bridge after all…

I want to slap the next person who tells me to count my blessings. I want to rub her face in it like a dog who shit on the floor*.  Platitudes are cruel and worthless,  and I’m tired of them. I’d rather someone just give me a hug and say “I’m sorry. This fucking sucks,” rather than sunshine.

I want to go back and tell all those people who tried to comfort me back in January with the promise of a healthy baby and just say “What now?”

I feel like an overfilled balloon. Ready to either explode… or fizzle out.

*I forgot to add this – I know you aren’t supposed to rub dogs’ noses in shit. It’s mean, and they don’t learn from it. I suppose the same thing could be said for people who tell me to be positive.

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I’m on my phone,  but I had to post: this week had been hell. Monday I had counseling,  which was rough, last night DH was taken to the ER from an abnormal ekg, and today we are trying to take care of his health.

Thank God we aren’t ttc this month.  I don’t think we’d be able to afford it.

I’ll post more properly later on today,  but we’ve been up since 4 am. We are just waiting for offices to open at this point.

What use do I have for optimism? Every time I think I’ve reached my limit,  my breaking point,  something comes along to remind me that it can and will get worse.

When I was driving to the ER, all I could think of is how long I would get for bereavement leave at work.  It wad line I was sent right back to January,  when I’d wake DH up in the middle of the night to check and see if he was still alive.

It’s seven am here,  and I’m already exhausted and have a headache.  I’m worried about me,  I’m worried about DH, I’m worried about insurance.

I hate self pity,  but I’m wallowing in it today.