Friday, September 2, 2016

You know it's bad when strangers hug you.

Well this week was relatively "easy" considering I only had one doctor appointment to contend with. I think next week I have a visit with the endocrinologist to see how my pee medicine is working (more on that in a bit) but the most important visit (to me) is the one with the doctor who delivered Lucy. I basically want to know what the hell happened because I've gotten bits from my mom, different bits from Matt, and a really broad run down from my actual OB, but she encouraged me to make an appointment with the delivering doctor that day just to get the full story. So I did, and that's next week. Which is why I haven't written down Lucy's birth story, I'm kind of waiting for that appointment to make sure I get details correct.

But here's where I am now:

- I go to my OB again in November to have a full panel of labs run to see where my hormone levels are. She is 75% sure that I am basically a closed down baby bakery because of my pituitary gland being shot.

- Which explains why I haven't gotten a period yet. No bleeding at all, actually. Nothing. Nada. No cramps, no indicator that anything is coming, totally the weirdest thing. She said I most likely won't have a period again. I likely will need a cocktail of estrogen and progesterone or whatever to make sure I don't go into early menopause, considering I'm only 34. And even though my family health history makes that scary, she said she would rather me get cancer (I'm considered high risk for breast, uterine, cervical, and ovarian cancers) than heart disease (something I could get without the hormones) because we can treat cancer. Heart disease is kind of bad. So that's absolutely terrifying.

- Last week my endocrinologist gave me kind of bleak news letting me know that my pituitary gland is basically shot and what that means for me. After all of my labs from last week came back the final verdict is diabetes insipidus, secondary adrenal insufficiency, and low thyroid function. Basically I have Sheehan's Syndrome. It's a good thing I'm not a breast feeding mama because I'd be in bad shape right now since I have zero milk production. Perhaps the only bright spot in all of this is that I have had no milk come in and I have evaded the pain of milk drying up. So.. yay! But also along with this is that I don't think I'm growing hair on my legs or under my arms. Like, it's been a month and I haven't had to shave. Which is totally awesome, but what about my head? Is this it? Is what I have all I'm getting? Nobody seems to know.

- The neurologist I saw earlier in August to go over my MRI must have gotten the more advanced scan results because "after more looking" she wants me to see a specialist in traumatic brain injury (which is what I'm classified as because I technically died twice and the mass amount of blood I lost combined with loss of oxygen for two separate times... bad stuff happens when that happens) at the other hospital to do scans and look at my earlier scans. That's happening in November. Along with more scans at my hospital plus a series of "brain activity tests" to basically see how I'm functioning.

- My OB let me know I failed my post partum depression test and to continue with my anti-depressants, but if things don't get better in the next 2-3 weeks, I need to call and we'll start increasing my dosage. She also wants me to get into counseling for not just my depression but for PTSD. I exhibit a lot of the symptoms of that and she thinks I'm going to have a breakdown if I don't get some immediate treatment. So.. I guess I'll work on that. I can't afford it so who knows how that's going to work.

- The EOB's are starting to roll in. Now I'm getting really scared because we can't afford any of this. Not with Matt not working his usual schedule because I can't do the mornings on my own yet. Hell, I can barely do much on my own. Thankfully the big kids go back to school tomorrow but I won't lie, not having them to help me with Penelope? I'm worried. I hate relying on my mom and Matt's mom to basically babysit and help me take care of my kids. But between the depression, not feeling great physically, and my slew of medication that makes me feel run down and sluggish, I just can't do it. Some mornings I wake up by crying in the shower. I think Matt is concerned but he hasn't said anything. I don't know what I would even say back, to be honest. Certainly nothing that would be reassuring, that's for sure.

But what's been the strangest is when absolute strangers hug me and ask how I am. Doctor's offices, Walmart, the grocery store, the kids' school. I don't know what to say. If I say "good", they immediately feel relieved and assume I'm 100%. If I'm honest and say, "not good", they look like they don't know what to say or do and it's awkward for us all. But at this point, I can fake it for awhile but then it becomes obvious I'm not up to par and things aren't good. And sometimes I want to scream at people, "I DIED, FOLKS, TWO TIMES!" because it drives me nuts when people don't understand exactly what I went through. I mean, I can't even get mad because who the hell even has this happen to them? I do. I do, folks. I shouldn't even be surprised anymore yet here we are.

So have a good weekend, lambs. I'm going to try to be a mom, on my own, for a bunch of hours this weekend. I'm 100% terrified. I keep telling myself I just have to keep them alive. That's really all I have to do. Stay alive and keep them alive. Easy peasy, right?

4 comments:

Mattie @ Northwest Native said...

When do you get to talk to the delivering doctor? Hopefully that gives you some answers. I'm sure not being able to be fully independent is rough, but I bet your mom and MIL are happy to help!

The Flynnigans said...

Being Canadian, I think many of us take for granted our health care system. Truthfully, until you died Sara, I wasn't able to appareciate it, because when I see you, someone who legit needs medical care, how can they just keep sending you bill after bill after bill? After all you've been through, Christ no one wants to or can afford that shit. It just makes me sad and angry for you.

I pray you have some more answers soon so you can piece together things and know what your possible future looks like.

Big hugs sweetheart. xo

Lacie Orheim said...

I've followed your account for about a year now. Penelope was born right before my daughter Leeta and you seem like an amazing mom. I think you need to allow your self to have the crappy emotions and vent and be frustrated because you're going through and extremely terrifying time. You didn't ask for any of this, and what most people take as one of the most joyous events in their life turned out to be one of your scariest, to say the least. It's ok to ask for help from your mom and mother in law... you would do it for your children I'm sure:)...

The endless bills aren't any fun either, but one way or another you'll get through it.

Take it day by day, hour by hour if you need to, but remember you'll get through it. My mom always says " you can laugh or cry at hard times, I choose to laugh " I hope any of my rambling makes you feel at least an ounce better.

Lacie
Laorheim@gmail.com

Julie H said...

Hugs girlfriend! I hope you start getting more answers and things start looking up.