About the blog

In 2016, I did a series about being pregnant while having a chronic illness/ disability, called “Pregnant Zombie Love.” I discuss medical care, insurance coverage, and the many complications of being pregnant while battling chronic health issues.

Crazy Versus Breast Milk

I’m at a crossroads. Take my anti-depressant/ anti-anxiety medication or make enough breast milk to satisfy my baby. Both can’t be accomplished. It’s one or the other.

I’ve tried maybe five or six breast milk supplements. Fennel with thistle and nettle pills, marshmallow root tea, ginger, shatavari root extract, fennel seed drink mix, and so on. I’ve spent a lot of dough trying to find the right supplement.

The fact of the matter is Wellbutrin ups dopamine levels, and dopamine lowers prolactin levels. You need prolactin to make milk. =

SSRIs, which effect serotonin, have never helped. My issue has always been a dopamine issue.

It’s tough. She smiles when I give her the mere ONE OUNCE I can pump out PER DAY. She loves booby milk. And it seems to lessen her nasal congestion and it could help her eczema. There’s also a bunch of nutrients in breast milk that aren’t found in formula—even the expensive fancy formula I have.

But how crazy can I let myself be? How depressed can I stand? How awful can I be around my significant other?

Yet, I’m down about not being able to give her breast milk. I want to be able to do that for her. I feel like Why should she have to suffer just because I’ve got a chemical imbalance?

But stopping Wellbutrin could also make my Postural Orthostatic Tachycardia Syndrome worse too.

It’s so unfair. I know, I know. Life’s not fair. But seriously, this is terribly unfair.

Owing Your Employer for your Medical Leave

Here’s how maternity leave and disability medical leave in the state of Florida can work—at least—based on my employer.

I’ve done both. I had to take a disability leave prior to child birth and then I’ll need maternity leave. Regardless of whether you need disability leave prior to childbirth, if you take maternity leave in the state of Florida, you may end up owing your employing just to keep your healthcare coverage by hundreds of dollars.

And that’s if—IF—you are so lucky to have an employer that grants you health benefits— (because let's face it, a lot of people don't get health benefits and a lot of teachers are never considered "full time" employees to receive benefits).

Here’s how it’s “working” for me:

Normally, I’d have $104.78 deducted from my bi-weekly paycheck for my health benefits by my employer. This is about $210 per month. My health insurance covers me for short-term disability and also 4 to 6 weeks of maternity leave.

If you actually get your disability leave approved, you’re only getting about half your usual paycheck and then you owe $210 per month BACK to your employer to keep your health insurance. So your health insurance is basically paying you to pay your employer to keep you on coverage.

If you don’t get approved (let’s say there’s a glitch somewhere, the doctor didn’t fax in the right notes, someone dropped the ball, etc.) you still owe your own company back your health insurance coverage payments.

Then, for maternity leave? The government requires you be able to keep your job for up to 12 weeks after the birth of your baby. You have at least unpaid leave granted to you. Thank God for that.

IF your employer uses a disability plan for maternity leave through your insurance, it’s like an extension of disability leave (it’s not actually a separate maternity leave the employer is paying you, though it seems like they like to make you believe that). It’s just part of the health insurance coverage you’ve already been paying for (and are rightfully owed).  You get 4 weeks of this half usual pay after vaginal delivery and 6 weeks of half usual pay after c-section delivery. That leaves you with no pay for 6 to 8 weeks during your 12 week maternity leave, and you still owe bi-weekly $104.78 or $210 monthly.

What I’m trying to say here is:

1) Shouldn’t an employer AT LEAST cover you for your health insurance payment during disability leave/ maternity leave?

2) Is it not insane to receive a disability payment from your health insurance company, and then have to pay a third or half of it right back into the pocket of your employer just to keep your health insurance coverage?

3) When all disability/ medical/ maternity leave is said and done, I’ll owe my own employer AT LEAST one thousand dollars just to keep my health care coverage. It will probably be more if I take the full 12 weeks of maternity leave.

4) This is the America we live in. Other first world countries do not have this absurd bass ackwards system.

Childbirth Plan for POTS Patients & Catch Twenty-Two

I needed rest. I took the medical leave. I have dizzy spells at home frequently and I don't drive much these days. But overall, I'm feeling better because I can lie down whenever I need to. My anxiety and depression have improved considerably.

But while I’ve been feeling better by taking medical leave from my work prior to the birth of the baby, I haven’t been able to get a straight answer regarding my “birth plan.”

A birth plan is how you plan to give birth. It considers at-home birth, c-section, vaginal delivery, what types of anesthetic you’ll use, and so forth.

Given my POTS, and given my history of blacking out and pre-syncopal episodes (pre-syncopal or pre-syncope means pre-full-black out. This is when the room starts to go black around the sides, but I’m able to stay awake if I quickly lie down and raise my feet), and given my rare genetic condition concerning choline, I have stated several times now that I feel it might be best to have a c-section. I truly believe I’d black out during labor. I nearly blacked out during my last papsmear for God’s sake.

It’s not a squeamish thing. In layman’s terms, it’s the vagus nerve (which runs from the neck down to the pelvis) getting improperly stimulated, causing the body to black out. Even a bowel movement can create a situation where I’m pre-syncopal.

The problem is I haven’t completely, fully blacked out in years. How is this a problem and not a good thing? Because then doctors use this as an their excuse that I’m doing “great.” Nevermind all the pre-syncopal episodes I still suffer during the year.

It's a catch-twenty-two.

In short, I’ve learned what will cause a black out and I’ve learned earlier signals (like extreme fatigue), and so I’ve prevented black outs by not doing activity—often basic activity—and just lying the hell down. But because I’ve become so great at preventing black outs, that comes across as my health problem isn’t that bad. And often pre-syncope seems to be taken either with a grain of salt or as an exaggeration. Unless I lose consciousness it’s not considered serious enough. This was the problem that made it difficult to get diagnosed in the first place for so many years.

So my OBGYN referred me to a cardiologist for testing and consult to figure out my birth plan of action. He’s been under the opinion that if I have a c-section, he’s considering it “elective,” which then means my insurance company will not cover two thousand dollars worth of the surgery.  It will be an out of pocket cost because the doctor has not deemed it necessary.

I had hoped the cardiologist would be able to offer her opinion that a c-section would be best. Instead, I got put through the lousy holter monitor that didn’t always work, and an echocardiogram (which is where I caught that terrible virus with bronchitis back in August – a fluke disaster). I’ve had many of both. But whatever. I went along with the basic tests as a formality.

Her 15 minute follow up appointment she stated, “I don’t want to get into trouble,” meaning sued, for recommending a c-section, “just in case something goes wrong with the c-section.” She said, “There just isn’t the language to state to the insurance company that would recommend c-section for POTS. We don’t have the research to back it up as necessary. Other women have done fine.”

I get it. It’s her livelihood. I wouldn’t want to be sued either. But I really feel like she only spent two 15 minute appointments with me and barely knew my health history, yet charged hundreds of dollars for these consults. And I really feel like she has no understanding of the varying degrees of POTS severity. Some women ARE indeed fine with vaginal birth. Some women don’t have POTS severely. I, on the other hand, have had POTS severely. She’s definitely by no means anywhere close to being an expert. She told me she had done “some reading.”

I told her, “I gave you the NIH documentation stating that I have an abnormal baroreflex response. All of child birth is the baroreflex.”

The baroreflex is the bearing down reflex you use for a bowel movement and for child labor.

“There’s just nothing to back up needing a c-section.”

“Can’t we retest the baroreflex then?” It’s a simple, fairly painless test where you bear down on a device in your mouth, but something tells me Winnie Palmer probably doesn’t even have that test on hand.

She couldn’t answer this and adjusted her notes.

I started to cry and said, “So, okay, I need to know: if I have the vaginal birth and I black out during labor, what is the protocol?”

She got strangely hesitant about answering this.

I said, “If I black out—which is most likely going to happen—will the baby be cut out in an emergency c-section?”

Mind you, an emergency c-section can be worse than a planned one. The incision can be bigger and also sometimes sliced at a different angle (up and down the abdomen/ pelvis as opposed to a smaller incision across the lower pelvis). It can be harder to recover from.

I never got an answer out of the cardiologist. She deferred to my OBGYN and changed the subject to how she’d confer with an electrophysiologist about c-section and POTS.  An electrophysiologist has nothing to do with the baroreflex or testing this and I said that. She agreed but said he might have ideas about whether the c-section could be deemed necessary. Whatever that means.

Here I come to find out, there IS NO protocol if a woman blacks out during childbirth. In fact there’s not much protocol for a lot of emergencies during childbirth for the entire United States.

Check this out:

https://www.bustle.com/articles/99126-why-american-pregnant-women-die-at-a-shocking-rate-and-what-we-can-do-to

Prenatal or Antenatal Depression & Anxiety

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The face of depression. This is a painting I did during a depression a couple of years ago. 

So much of chronic illness for POTS patients is the unseen. 

Pregnant women are supposed to be elated and actually I do feel excited about my baby. I didn’t really in the first trimester so much, but I do now. And yet, that doesn’t stop the depression and anxiety. 7 to 20 percent of pregnant women experience prenatal or antenatal depression. It's often a precursor to postpartum depression if not treated properly.

POTS patients already have a tendency towards anxiety disorders to begin with. There’s multiple reasons why. For some it may be a thyroid issue or some other imbalance that will never quite be resolved even with medication. Perhaps we all had a lot of stressful childhoods. Or it may be that having an autonomic nervous system that’s so easily stimulated or on overdrive day in and day out lends itself to anxiety. Maybe trauma of previous bad experiences relating to Dysautonomia/ POTS triggers underlying anxiety.

The thing is—it’s very real and exhausting. It can also create a cycle of feeling sick.

Before pregnancy, I had suffered at least four severe periods of depressions in my adult life, and also daily issues with anxiety. SSRIs usually made me sicker. Wellbutrin was a relief. However, it also increases heart rate. So the treatments for depression and anxiety can often exacerbate POTS symptoms like heart rate and blood pressure instability.

At this point in the pregnancy—almost 28 weeks—almost third trimester—it’s difficult not to worry about finances. I think that’s my biggest worry. On top of worrying about how to care for the baby and also maintaining a loving, romantic relationship with my fiancé.  I still take 150mg of Wellbutrin XL, but often it’s just not enough. I really need a higher dose and perhaps a combination of a medication I’ve taken during depressions— Brintellix.  But really, it’s better for the baby if I don’t do these things.

With depression and anxiety, my POTS and overall health deteriorates, which in turn gives me more depression and anxiety. And if I get upset enough I can feel it stressing out the baby, which is unhealthy for the baby, which in turn makes me feel awful. If only I could put her in a safe bubble outside of my chaotic body.

I have to make the difficult decision to go along with my doctor’s recommendation of disability leave, which will leave me without pay for two weeks definitely, and then potentially I could get 60 percent my old pay if my insurance doesn’t deny the claim. IF. IF. IF slides down my body in a wave of heat and shorter breaths. The thing that first gave me relief in the doctor’s office days ago—a way out—a way to get more rest and relax—have less work obligations—gives me stress just thinking about the financial repercussions.

I can’t win.

Or maybe I can some. Maybe if I have the rest I won’t be on this much of an edge. I don’t know. It’s exhausting even thinking about it. The dread is overwhelming. It can be suffocating. How will there ever be enough money on top of my student loan payments, my car payment, groceries, taxes, medical bills, and on and on and on. I dread being a burden on my partner. I consider myself a strong woman and yet it's all overwhelming.

Hey, You're Fat. You must work here.

So when I was really overweight from the insulin resistance, almost every single time I was in a place like Target or Walmart or sometimes some place else, I’d get mistaken for an employee and asked about products. Almost without fail. Even if I wasn’t wearing the colors of the store. I rarely had it happen to me prior to the weight gain. No one assumed skinny me worked at a store.

When I lost all the weight, things went back to normal. I rarely got assumed to be an employee of any store.

But now I’m pregnant. I’ve gained thirty-five pounds and though all the weight is on my front, particularly belly, my baby bump is not a perfect round shape yet. Angled at just the right way, you might assume I’m just obese.

Today I was at Home Depot and bending down to get something. So at the angle I was at, you might not have been able to see I’m pregnant. Mind you I was wearing black capri pants and a dark turquoise T-shirt with “Zoo York” on it. My cart was full of stuff I was buying. There wasn’t a single bit of orange on me (the Home Depot color). And yet, a woman just presumed I worked there and started asking me questions like I worked there. I stood straight up, rubbed my belly in that maternal way everyone knows, and said, “I don’t work here. I’m pregnant.”

I wasn’t mean about it, but on the inside I was furious. Again?! Seriously?! Why is it assumed that if you’re fat that you’re there to wait on people? Am I the only one that this happens to? It only happens with significant weight gain.

"You'll Finally Be Whole/ Wise/ an Adult Now That You'll Have a Child"

Ohhhh reeeeaaaaalllllllyy.

I'm adding onto my last vlog about things people say to pregnant women, and my personal take as someone with an underlying chronic illness.

Funny Things to say to a pregnant lady, particularly one with an underlying chronic illness:

1)   “You better sleep now, because you won’t sleep after the baby comes!”

Thanks for this tidbit of helpfulness. I struggled with all kinds of sleep issues including terrible insomnia prior to ever being pregnant. And now that I’m pregnant, of course that got so much easier.

In fact, it’s a looming fear that I won’t be able to function due to lack of sleep after the baby, so make sure to remind me of this fear. It’s absolutely hilarious and you’re giving me real world prepping advice!

2)   Me: “Wow, the baby kicks a lot. It’s kinda cool but weird.”

You: “Just wait until after she’s born and kicking you with shoes on!”

Oh, so you wanted to see my cringe face! No really, you shouldn’t have. You could have just offered me a dirty tissue, bad coffee, or a colon cleanse coupon if you wanted to see my cringe face, but this is a funny substitute.

Actually, I have weak muscle tone from my health issues. If I can physically carry that baby after three months, I’ll be lucky or it’ll be a miracle. And lifting the baby off the floor will be a whole other heart rate sky-rocketing can of worms considering the tachycardia I have.

3)   “Your life is going to be over now.”

Lolololol! I’ve already been through periods of time of being bedridden, hospitalization, needing wheelchair help, unable to maintain a career or romantic relationship, considering suicide when the physical pain got so bad. My life is going to be over NOW? Now you say? *falls off the couch laughing*         

4)   “The second trimester will be much better.”

LMAO.  Ummmm we’re in the second trimester now. Where’s my unicorn?

5)   “You have a doctor for your health issue, right? What does he say?”

*shaking my head*

No, I do not have a specific doctor for my health issue. Actually Dysautonomia specialists are extremely, extremely rare. And even a specialist is playing catch up with the research. Dysautonomia diagnoses “POTS” are syndromes that have not been determined to have a definitive cause. Anything could be the cause. Multiple things could be the cause. There is no fix.

I spend a lot of my medical consults informing the doctors about my health issue.

This quote is similar to "But you have a high risk OBGYN, right?"

I love my OBGYN but he does not understand my health issue specifically.

6)   Me: “I’m upset about how crappy my job maternity leave is.”

You: “Actually, that company is better than most in the states.”

OR

You: “It’s amazing women even get paid for having a baby these days.”

These are funny because they completely undermine my fear of being able to function after the baby because of my chronic illness and being able to support us. I get to feel more inadequate than the average healthy woman having a baby, while feeling guilty that I’m not more grateful.

7)   “Oh yeah I had a lot of fast heart rate when I was pregnant too.”

Unless you’re a POTS or NCS patient, or dealing with a chronic illness that has extremes in heart rate, I find your statement hilariously naïve.

On Trying to Be a Better For Her

Like many moms to be I want to be the best mom I can be to my daughter to be. I want her to be able to look up to me as a role model—as a thriving writer and artist—as someone who pursued and continues to pursue being creative because that is who I am to the core.

 This is complicated in a weird way. I was so chronically ill for years that my career fell behind. I often feel like I lost about ten years of my life. I’m playing catch up. And yet, it’s kind of hard to catch up with a baby on the way.

I feel the weight of financial stress—of trying to prep for baby, of trying to save up money for all the impending medical expenses, of trying to save up for a wedding too. There’s that nagging If Only, If Only, If Only . . .

If only I had figured out a stay at home career in my twenties that could’ve supported myself. If only I had even been well enough to begin with. If only I had researched biochemistry earlier to figure out my genetic issues.

 I know. I can only live for the present and hopeful for the future. I can’t dwell on the past. But as a memoirist finishing up a book, I had pretty much forgiven myself for all of these things—for not being “good enough” because I was so sick—for not being as successful as I could’ve been.

 But now with the baby on the way, call it the hormones or whatever, but those feelings are coming back up. Doesn’t everyone re-assess their lives when a baby is on the way? And how do you reconcile that with a life of chronic illness?

My Body is Not my own - Pregnancy v. chronic illness - Healthy weight gain v. Insulin Resistance

The thing is – when I was at my worst points of POTS (Postural Orthostatic Tachycardia Syndrome) or NCS (Neurocardiogenic Syncope), I’d have the sensation that my body was not my own, that I had no control over it—how it acted, how it lost or gained weight, how it stayed upright, how much energy it could grant me. There were always negatives associated with this lack of control, and sometimes changes meant permanent bad change or worse symptoms to come.

And now that I’m 22 weeks pregnant, I’m feeling that same sense of “my body is not my own.”

My only history of that feeling is coupled with a chronic illness that at times took years away from my life. It’s hard not to feel panicky sometimes because of this. It’s hard not to feel a sense of dread and impending doom. It’s hard to see the impending joy that so many people keep telling me about.

Weight and body shape is one way in which I’m feeling lack of control similarities between my chronic illness and my pregnancy.

The weight that I’m putting on? Though it’s normal for a pregnant lady—it’s starting to remind me of back when I went for years undiagnosed with insulin resistance.  I went for years trying to get doctors to give me the glucose tolerance test (GTT) WITH insulin measurements at each interval. Back in 2009, before my weight had gotten up to 200 lbs, I even asked a trusted doctor who I admire whether being on Metformin (a blood sugar medication) might benefit me. The conversation never really went anywhere. In 2010 (?), I tried to get the rare diseases doctor handling my case at NIH (back when I was a research patient) to run the GTT.

She refused and said I was fine blood sugar wise if my fasting blood sugar and my A1C was always normal. (Actually, this is absolutely not true for insulin resistant patients. My fasting blood sugar and A1C are usually quite normal).

Even after I got my first GTT, my general practitioner at that time didn’t read the results correctly. I needed a really great endocrinologist years later (end of 2013) to know how to give the test and how to read the results. Then, after taking my history and doing lab work, she felt that I had probably dealt with insulin resistance even as a dieting skinny teenager. People can have an underlying genetic issue that predisposes them to insulin resistance. People can even be skinny when they start out with insulin resistance. For years.

While undiagnosed I went from my lowest NCS/ POTS weight of 125 lbs up to 230 lbs before I stopped looking at the scale. And most of that weight was on my abdomen. I looked like a pregnant woman, but I didn’t have the impending joy to go with it. There were no baby kicks, there was no loving partner, there were no friendly faces. In fact I stopped going to the beach after two young men walking behind me on my way out to the sand made cracks about my weight and what a real fatty I was.

At some point between 200 – 230 lbs I took a vacation with my parents before I started my current teaching job, back in September 2013. At that point I figured I’d take a photograph of myself in a bathing suit, because I couldn’t believe how absolutely out of control my body had become. It looked foreign to me. I remember saying, “Holy shit, I look pregnant.” Only I wasn’t. I was just very improperly diagnosed at the time.

NOT pregnant - Insulin Resistance out of control - September 2013 - in my bathing suit at hotel

Once diagnosed, I was put on Metformin and taught about how carbohydrates and protein effected my blood sugar. I was given a Diabetes booklet on how to eat. Within three months I lost the first 40 lbs. At one point I got as skinny as 130lbs again. Just before I was pregnant I was at 149. Healthy.

At 21 weeks while getting over Bronchitis no less.

At almost 22 weeks.

Bump

On one hand I’m joyous looking at my baby bump because now it’s a bonafide baby bump. On the other hand, every time I look in that mirror I think back on that picture of me in my bathing suit from 2013 absolutely freaked out about my shape.

Let me be clear—it wasn’t just the weight itself though. It was all the health issues associated with that weight—the shortness of breath, the exhaustion, the back pain, the feeling like I had a weight belt around my stomach at all times that I wished I could just take off, the overheating because of the extra fat, the blood sugar crashes, the bouts of feeling starving and needing to eat way more than I should.

And then there’s the anger.

How many times was my insulin resistance overlooked? How many times did I ask to have that checked? How much of my career was lost because my blood sugar was so unbalanced that it would provoke my POTS and NCS symptoms? (Dysautonomia patients are actually more likely to faint due to changes in blood sugar).

The bottom line though?

Chronic illness has greatly shaped my view of pregnancy symptoms. And part of functioning day to day is working on changing my own perception of “my body is not my own” as something that has the potential to be extremely positive. It’s not easy though. The past still haunts me.

A Visit from Ashley Inguanta

My friend Ashley came to visit last night. She was having an allergic reaction and didn't want to be alone. So she took some benedryl and came on over to house. Matt was at the Gator's football game.

I have disinfected a bunch of the house from when Matt and I were sick and aired out the baby room/ art studio. Washed a ton of laundry. So I put her up there for the night.

I'd have to say, having had a chronic illness I feel more empathetic to stuff like random allergy attacks. I often wonder if I'd be capable of the same level of empathy--or even sympathy-- if I hadn't been so sick most of my life. Would I be cold towards people with illness if I hadn't been so sick? I don't know.

Anyway, this morning we hung out and listened to baby lullaby music of bands like Smashing Pumpkins, The Clash, and Muse.

LOL Unbelievable

So get this:

The heart monitor kept trying to fruitlessly submit the recordings to T-mobile cell towers and there was no way for me to keep the monitor on for recording purposes AND stop it from fruitlessly throwing out its signal to transmit. So the brand new batteries are now dead within HOURS of starting the heart monitor.

I'm going to call my doctor's office on Tuesday. (Monday is labor day). If they don't have another heart monitor company they use I have no idea how they plan on getting heart monitor readings from me.

Ground Control to Major Tom

After trying to set up the heart monitor (see last blog/ vlog) it turns out that the company doing the heart monitoring uses T-mobile to transmit the recordings. Well, T-mobile has shitty service in the Maitland, Orlando area. Thus, I need to use a landline instead. Only I don't have a landline and neither does anyone near me. Insanity ensues. . . . . 

Monitor away oh Boxy Thing-a-Ma-Jig!

In today's vlog I discuss setting up an external heart monitor device.

See follow-up here: https://youtu.be/88ZQhXyGLww

Pulp Problems, Vegetable Problems

I’ve been wanting to eat more vegetables since I’m pregnant. I also figure it might help just in general Dysautonomia/ POTS health issues to get more nutrients.

The problem is I’m not on big on vegetables to begin with, but now that I’m pregnant I can’t stand the taste of so many of them. I had already planned before the bronchitis to use the new juicer I bought. So I decided to try it.

Okay-- The juice was amazing!!! and it included cucumbers, spinach, and carrots.

Juice contained: watermelon, carrots, spinach, guava, apple, cucumber, banana, blueberries, and mango.

But then I was left a ton of pulp. Like A LOT. A ridiculous amount. It seemed like such a waste.

So I mixed up the following and stuck it in the oven: organic egg, baking powder, brown sugar, half and half, flour, (salted) butter, dried lavender petals, dried cherries, lemon juice, vanilla extract, and pulp from watermelon, carrots, spinach, guava, apple, cucumber, banana, blueberries, and mango.

First Round Ingredients:

• 1 and ½ cups organic flour
• 1 stick of (salted) butter
• 1 egg
• ½ cup half and half
• ¾ tablespoon baking powder – (Would try ½ tablespoon baking powder next time – added to the salty battery taste.)
• ¼ cup brown sugar – (This probably needs to be raised to 1 cup of brown sugar. ¼ cup I could still taste too much flour taste. Plus the bits of spinach add bitterness.)
• ½ a teaspoon of vanilla extract
• sprinkle of lavender petals (didn’t seem necessary later)
• sprinkle of dried cherries (added a great vibrant hint of flavor!)
• one squeezed small slice of lemon
• Left over juicer pulp from watermelon, organic rainbow carrots, fresh spinach, guava, apple, cucumber, banana, blueberries, and mango
• I added pulp to consistency liking (ended up with probably about 1 and ½ cups of pulp)

I Wanted to make muffins but didn’t have a muffin pan so I put in a rectangle glass cake pan about two inches deep

At 375 degrees. It ended up taking 39 - 40 mins total.

Texture wise it was a moist dense cake but stable in consistency.

Lessons learned:

1) If I had to do over again I’d probably nix the spinach. It’s too bitter. I’ll probably never juice spinach again anyway, because it really didn’t do well in the juicer. It’s meant for a blender.

2) But keeping the batch I have (which has spinach), at the very least I’d add more brown sugar or add stevia. **Really, most cake and muffin recipes count on more, but since I’m trying to cut down on my sugar intake, I had significantly reduced it. Stevia might also be a good option.

3) I also have to wonder if that was too much baking powder – perhaps that added too much salty taste.

4) I might also nix the lavender. Really doesn’t seem needed.

5) I also might try it with cream cheese icing, but again, that’s adding sugar, which I’m trying to steer clear of.

6) At the end of the day, I still ended up with amazing juice and I'm eating more vegetables because of it.

The SICK CHEF Cooking Show! and I Love You My Little Thyroid

The SICK CHEF Cooking Show!

I had a 15 minute burst of energy enough to make the fiancé and I some chicken soup. (See cooking special below for absurdity).

Overall it’s been a gloriously ill ride the last couple of days. I had a brief burst of energy the Thursday after the ER, but I spent most of that energy doing the most basic of things like cleaning, eating, and grading creative writing papers. That said, I may have overdid it, because Friday (today) I’m wiped out again.

But that’s the way with POTS and a lot of chronic illnesses. We might have brief bursts of energy—and often we aren’t sure whether we should even use them. We don’t want to use ALL of our energy. And maybe that burst is all we’ll have for days. But then sometimes, I just embrace it and use it. I never know if I’ll have more again anytime soon, so it’s best to just get what I can get, particularly now that I’ve got the secondary virus and bronchitis with sinusitis I’m fighting.

Some of what makes the wax and wane of energy so crappy, doesn't even have anything to do with my body. It's when people see people like me have a brief burst of energy and they think we’re okay. They think, “Oh she’s fine again.” No. More often than not it is short lived.

I Love you my little Thyroid

Last night a bunch of my hair fell out in the shower in two lumps in my hand. Mind you I have the finest, thinnest hair already. Losing it makes me cringe.

It sucks, but it’s not uncommon. I have hypothyroidism and when I get really ill, sometimes that puts a strain on my thyroid to the point where I end up with clumps of hair in my hand, standing in the shower, sighing or cursing.

But I’m pregnant too, so that puts its own strain on the thyroid as well. Tests in the past month showed that my thyroid was doing well, but as with everything, I’ll have to get a follow-up test. It may be once I’m better from being sick with the virus and Bronchitis my thyroid will be fine. Or it could be now that the baby is much bigger at 5 months that I’ll need a higher dose.

That said, today I was out of my Armour thyroid.  And since Matt seemed so ill this morning, I didn’t have the heart to wake him to get it for me. Looking back, I probably should have just woken him. I felt shitty just from getting the meds. And then, after all that, I realized Dad had left me some of his spare pills in the house just for a situation like this. I'd forgotten all about them!

Checked On In the ER - Wednesday Night

August 24th, 2016

I wasn't really getting better so I talked with my OBGYN, and he thought I should be checked out at the ER at Winnie Palmer. (My OBGYN is my high risk doctor just down the hall from that ER. So far they've been a good hospital). Anyway, I received an assessment from a respiratory specialist, breathing treatment, and a cool device that vibrates the lungs as you breathe out to help break up junk in the lungs, called an "Acapella." I'll write more on the ER experience later because as a lot of people with chronic illness knows, this can be a nightmare more than for the average person if we have to deal with a doctor who feels threatened by how much we know about our bodies already.

In the meantime I wanted to share a moment that took place. I'm a strong woman on my own and I have many amazing friends who can bring me to full on laughter, but my fiance makes life feel easier and calmer, and yes, he makes me laugh too. When I'm sick, the love for my partner grows, because he comes through as someone who is caring and compassionate, and I think, Wow, he's gonna be a good dad.

Anyway, he asked the respiratory specialist where the bathroom was and she pointed down the hall, so he left, and I looked at her and said, "Isn't he just so handsome? He's so handsome!"

She laughed and said, "Yeah, he's a redhead."

"I swear he can ask where the bathroom is or anything stupid and all I think is he's so handsome."

"Yeah, you're in love."

Yay! Bronchitis for the win!

While at the Clinic

So I’m in this curtained off space, not a room—more like a typical ER than the CentraCare Clinics I’m used to. But it is what it is. And there’s this woman in the curtained area next to me who is obviously in the early stages of a stroke or heart attack, but is in total denial. And it’s because I know so much medical info by now and so much stuff about heart rate and blood pressure that I’m picking up her oral medical history in tandem with the doctor, and it’s registering for me the same as it is for the doctor: this woman needs to be in the emergency room.

Note to self: Sometimes the most disgruntled ultrasound techs give the most happy exclamation-pointy ultrasound pictures.

It’s bizarre. The baby is kicking away. She thinks going to the clinic is the coolest field trip this week. I’m in my curtained space curled up five months pregnant, studying the CentraCare pattern on the blue fabric, waiting on my antibiotic prescription and this woman begins relaying her symptom of weakness on her left side, how she can’t use her left arm, how she has hereditary early onset hypertension but it’s been fine off of her medication for the past two years—her blood pressure is usually normal she tells the doctor—and I’m thinking, Wait for it—wait for it—wait for it. The doctor asks her what “normal” is for her. 160 over 110. !!! That’s classic hypertension and that’s not even how high it gets when it spikes apparently. So I and the doctor on the other side of the curtain die a little when she says this. I’m recounting an old cardiologist warning me not to let my blood pressure get higher than 150 over 90.

I pick up on the dismayed tone in the doctor’s voice at her confession that she hasn’t taken blood pressure medication in two years. But on my side of the curtain all I can think is, I understand. I’ve been there. There’s so many damn side-effects with these things. She was probably relieved and feeling better off of them.

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I ended up getting medication for the infection because trying to get better on my own wasn't working. In this vlog, I discuss medication complications posed during secondary illness while having a chronic illness and pregnant. I promise in the future I'll be way funnier. But bonus side note material: I swear that's not a booger in my nose. It's just my sopping wet nose glistening. I SWEAR.

Even still, I figured if that is indeed a booger, let's be real here folks: This is what being in bed sick looks like. This shit is more real than Madonna's Truth or Dare film. 

To Clinic or Not to Clinic? - Week 20

August 22, 2016

I'll write more later but for now here's the vlog for this morning.

Sunday Before Week 20 - Hi

August 21st, 2016

showing off horror flick moves in utero

I’m starting this blog because while I found a ton of info, articles, and blogs on whether or not I should conceive while chronically ill, I didn’t find a whole lot regarding the in-over-my-head feeling I have now that I am pregnant while chronically ill.

This really came to a boiling point this week, because on Monday, August 22nd, I’ll be twenty weeks pregnant (5 months)—the “half way point” of pregnancy—and I've felt the worst I’ve felt yet, while every pregnancy app out there says stuff like, “You’re probably feeling like you have much more energy now! Most women feel this way in the second trimester.” To top it off I woke up yesterday with a sore throat, headache, and cough, which will mark the fourth time sick while pregnant (I’ve already dealt with Shingles and Epstein Barr reactivations), because when you have a chronic illness, getting a cold is pretty darn easy.

I’m a writer and artist. It’s what I do. I suppose I need this in order to process the isolation at times, but the more I thought about it, the more I realized, If I feel this way, how many other women must too?

So I dedicate this to you, ladies. We are the “high risk” ladies. We are the knocked up chronically ill. We are the invisible illness ladies and the not so invisible illness ladies, working on making a human while trying to function basic tasks. I toast this start off message with a non-alcoholic beverage just for you.

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My journey begins as a POTS (Postural Orthostatic Tachycardia Syndrome) patient, co-diagnosed with Fibromyalgia, Chronic Fatigue Syndrome, Insulin-Resistance, Hypothyroidism, and a couple of amino acid or vitamin deficiencies that are the first of their kind documented in the entire world. I was a research patient for about six years. I’ve had more tests done on me than I care to remember. I wanted to make a difference though for other POTS patients. Finally, this research paper was written and published about my cells. (See: http://www.ncbi.nlm.nih.gov/pubmed/25466896 ) Hopefully it will help others.

Just before I got pregnant I had the worst bout of Shingles in years and period that lasted a month (they found a polyp and presumed that was the cause). I didn’t anticipate my body was even well enough to conceive, let alone maintain a pregnancy beyond the first trimester. And we weren’t trying to conceive. I simply miscalculated my ovulation because of all the previous bleeding like a total moron and the lousy mathematician I am.  My mother had asked, “How did this happen?”  Well, Mom, the usual way combined with sheer stupidity, really.

In fact I had already decided I wasn’t well enough to try to have a pregnancy. I had set up an appointment with a fertility doctor to discuss getting my eggs taken out. I had filled out forms to receive information about adoption. My significant other hadn’t proposed yet, but I’m thirty-five. I figured it was high time I plan stuff. Frozen eggs and adoption info seemed logical. And terribly responsible. I would have children at forty via adoption or surrogacy if—and only IF—I was well enough then. I was pretty proud of my well-planned genius self.

Here's a snapshot of a dorky thirty-something couple with almost everything figured out during Christmas vacation.

But we got pregnant and I figured if out of all the miraculous things that had to come together in order for my body to even conceive, I would help this life the best I could. There are parents out there dying to conceive. Maybe, I thought, this is the lucky gift I get after so many years of suffering a serious chronic illness? 

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