Happy National Porphyria Awareness Week!

20 04 2010

Sound the trumpets! Strike up the band! It’s National Porphyria Awareness Week, everybody!

So, I’m late. In my head, the week was from Monday through Friday. But upon further inspection, I realized that it actually began Saturday, and goes through Saturday, but a week starting on Saturday just doesn’t make sense to me.

And since I missed yesterday’s post I’ll do two today.

I’ve been a little distracted from all things Porphyria, though. Last week Eric did something to pinch his sciatic nerve, and he pretty much couldn’t get out of bed all week. A trip to the ER and then to Patient First, and now to Dr. LaPlace, tons of pain meds, steroids, antispasmodics, muscle relaxers and anti-inflamatories, hot tubs, pools, steaming showers, and a bunch of massages with holistic herbal massage gel (given by yours truly,) and he’s finally able to hobble around enough to at least get to work, but it’s certainly not cured.

Usually I’m the patient and he’s tending to me. Since I’ve known him he’s never been sick for more than two days. I don’t like this one little bit. I’m exhausted. He’s been trying to be as much help as possible, but most of the housework and child-rearing was left to me all week, and my poor little porphyria body can’t take that.

Oh yeah, and did I mention I’m pregnant?


We found out last week. I was going to wait at least a couple of weeks to go public, but last Saturday, Eric was bored and home all alone, and decided to post it on Facebook.

So, as soon as I found out, I emailed the hematologist, Dr. Bremmer, and let her know, because there’s not much research that I can find about the safety of hemetin on a pregnant woman, so I’m giving it up for now. I’ll still go in weekly for glucose infusions, just to give me that extra boost of protection. Especially because it may get hard for me to keep anything down soon, and that’s a perfect trigger for an attack.

But if this one is like my first, I’ll feel nauseated all day (much like I do right now,) but never actually throw up, and in fact, I’ll stuff my face with snacky food, looking for the anecdote to the nausea.

My pants are already snug.

So, the first trimester of pregnancy makes me super tired and annoyingly nauseated. Hmmm… Sounds like a normal day with porphyria to me!

I am more tired than I was, if that’s even possible, and the nausea is more persistent, and my food tastes and distastes are getting weird. It will be interesting to see if my life is substantially more difficult while pregnant than just while porphyric, BUT. The silver lining is that supposedly, the hormones that are making me so tired and sick are also supposed to protect me from an attack. The little information that’s out there about porph during pregnancy supports the theory that porph goes into remission for most pregnant women for those 40 weeks. Once Babo pops out, though (Adelaide has named her/him Babo,) the drop in hormones may bring on an attack.

Although, I’m not sure how breast feeding plays into that. I BFd Adelaide for 27 months, and fully intend to BF Babo for as long if not longer, and I’m pretty sure that all the stuff I read about the drop in hormones stimulating an attack was assuming that BF was not in the picture. (Which makes me crazy, but that’s another story.)

I’m very sad that I won’t be able to enjoy any mojitos on my porch this summer. But we’re all super excited to welcome Babo into our lives in December.

This blog just took on a whole new attitude, by the way 🙂

I’ll be posting tonight my official Tuesday post, as this is my offical Monday post. Tuesday’s topic: Be Aware of Your Environmental Toxicity. In other words, stop blowing your F-ing smoke in my face.





5 responses

20 04 2010

Congrats!!! I actually skimmed a headline earlier this morning that said something about pregnancy being protective. My bet is you saw that one already, but if you want I can try to find it again later. Hope you and Eric are both feeling better soon!

20 04 2010

Congratulations on baby Part Deux. My husband and I aren’t ready now, but have talked about pregnancy now that I’m a Porph and how that might affect me. I’m excited already to hear that the hormones during pregnancy can actually help protect you from attacks. With your husband, has he tried a Chiropractor? My husband is one and sees patients all day with sciatic pain. It can be easily corrected…. and of course without drugs (which in my life is always preferred). Again congratulations and Happy Porphyria Awareness to all!

21 04 2010

He’d like to go to a chiro but we’re trying to figure out if our insurance will cover it. Our financial situation is horrid at the moment. I had to quit my job last fall because I was too sick, and my husband lost his job at the year’s end when the store he worked for closed. So, he’s been out of work for months, although he just found a temp job with the census. It doesn’t pay much, but it’s a job! We’ve continued our health insurance through Cobra for my sake, since I’m getting weekly treatments of $3000 doses of hemetin… But to pay for Cobra, we have no money left over at all. It’s very frustrating. I’d like to have him go to an acupuncturist and a naturopathist, but that’s not in our realm of possibility at the moment. Sucks.

20 04 2010
Laurie Smith

I’m so happy for you and Eric and Adelaide!!
I think that is true about being protected during pregnancy. I had no problems during my pregnancies. I had two, both very normal and healthy, both natural deliveries (no drugs). Sabrina, I hope you have a blissful pregnancy!

21 04 2010

Thanks for the encouraging words! I’m actually interviewing midwives and trying to plan for a home birth. I believe it’s safer than a hospital, especially for a porphie. I’ll post more about this later, once I’ve worked out all the details.

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