Rays of light…

25 06 2015

A few days ago, Esther Pearl took my hand and walked me out to the big rock in the middle of the yard. “Let’s watch the sunset, mama! The sky is PINK!” It gave me those deep-down shivers, the kind that only happen a few times in a life. We sat and watched the sky morph from orange to pink and red and violet, while we played “camping” and she set up our pretend campsite. She noticed the fireflies coming out to play, so she ran and caught a few to say hello. It was a simple, clear, perfect stretch of time, as she invited me into her world and I chose to really join her there. We breathed deeply together and made pretend smores, we snuggled and watched the Earth around us settle into night and made up our sleeping bags on the rocks-turned-tents. I settled into her Space, where the only things happening were Us, colors in the sky, blinking lights in the trees, and the best, most perfect campsite ever. 

This morning, when I woke for the fourth bathroom trip of the night, I saw the sky coming into orange at the horizon. I took a chance: I rubbed Esther Pearl’s back and said “Would you like to come sit at the bathroom window with me and watch the sunrise?” 

She nodded yes and held out her hands. 

After a few minutes watching from the window, we decided to go sit on the front porch for a better view. I sat down on the front step, my four year old baby in my lap, the two of us tightly entwined for the tiny extra bit of warmth we needed against the lingering chilly night air. She’d sleepily look now and then at the horizon, “Look mama! The sky is PINK!” and giggle at the cat stalking invisible prey, take note of all the roosters calling to each other from every direction, yawn and rub her little hand on my back. We sat like this  for 10 minutes or so, while the sky between the tree line grew brighter: orange, pink, fire-red, yellow. Colors that happen no where else in the universe besides the precious moments before Mother Earth rotates to that exact point and Father Sun joins us for the day. 

After a particularly big yawn, Esther Pearl decided she wanted to return to bed and a couple more hours of sleep. It wasn’t until then that I thought to check the sunrise time on my phone, to find we were still 15 minutes away from the official sun-over-horizon moment. It didn’t matter though. She was happy we watched the colors, and she whispered to me that she’d do it again this summer at the RIGHT time. 

So I promised the next time would be at the beach, to watch the magical fire show over the ocean. And again, I teared up, and felt those deep-down chills as she nestled into my armpit to fall back asleep. 

Twice in three days, for a rare pure-bliss-and-peace moment? I’ll take it. Just when I was feeling so depleted, running on empty — My cup is overflowing now, and I know I will make it for another stretch. 

*As much as I wish I had a picture to share, I’m not sorry I left my phone behind for these moments. Hopefully you have a beautiful picture in your mind’s-eye of what we were seeing. If not: I suggest that now is as good a time as any to get outside and see for yourself. Next clear evening, pause your life and take in the sunset. And then set your alarm to wake up the next morning to watch the sunrise! You won’t regret it.


A Thanks-giving Promise

6 04 2015

Thanks to Lindsay Coursen, Laura Thompson, Elizabeth Parker and Jenny Huisenga’s collective decision and effort to fund-raise for us, we have LESS THAN $700 to go!!!!! 


Can I just say that our family is right bowled-over with everyone’s love and support and encouragement and kindness and empathy and compassion? You better believe that we are chomping at the bit to get the very most we can out of this opportunity and come home to a new life of implementing some remarkable changes to improve upon our overall health and happiness, as well as improve upon, more specifically, my unique health and pain management issues. And along with that, comes the very special privilege to seek out opportunities to PAY IT FOWARD. 

We take to heart that our journey through this lifetime is endowing us with the very important and solemn responsibility of teaching our children the truth of giving and receiving. Of graciously accepting and joyfully offering. Of humbly seeking help, and unconditionally and unabashedly acting upon a recognition of another’s plea for help. And you, who have shared our needs with others, who have given what you can, you have intersected with our life-path, and you have done good! (And well. This is one of those rare times when that phrase is intentional and grammatically correct;  when “good” is good😉.)

Though the financial portion of the chain of events required to make this trip happen has almost become a good strong link, another (unexpected) link has weakened, as many of you may know. Admittedly, I have felt panicky over this latest challenge: what started out with “this is probably just a 24 hour bug that hit me hard and the attack will subside as soon as the bug clears up” has turned into a much more serious and potentially dangerous situation RIFE with complicated…complications. Today I must make the difficult decision to do what I am worst at doing. 

I must choose to relinquish control. 

I pledge to do so to the best of my ability, while continuing to advocate for myself and responsibly act upon the doctors’ and nurses’ suggestions and “orders” (insofar as they do not conflict with my intuition or general knowledge of what is safe for porphyria) and I will accept that I can not change the outcome of whatever has been set into motion. 

Because maybe, MAYBE, I’m not supposed to! 

I can’t possibly predict which way this whole thing is gonna go, so there is nothing responsible or wise or safe about exerting stress-energy and control-energy over the infection lurking in my body. It brings me so much sorrow and disappointment to even ACKNOWLEDGE the possibility that come 5:30 am Friday morning I am not physically well or strong enough to get on an airplane and fly west. But if that IS what comes to be, there must be a very important reason for it. I will be open to learning, I will be receptive to the lesson. I vow to not let my selfish rage over my perceived unfairness of it all blind me to the likely simple, yet HUGE, and BEAUTIFUL, thing that I’m supposed to gain from that possible outcome.

Or, perhaps, tomorrow: 

My fever will break. The staph will exit my system entirely. I’ll get another PICC-line (the current is considered contaminated of course) to last me the month until they clear me for a new port. I’ll go home the following day (Tuesday) armed with my new IV meds regimen to REALLY, REALLY be thorough about clearing out every last residual bit of infection. I’ll spend Wednesday scrambling, panicking, giggling, taking care of last minute details. And with help from several – as in ALL – of the alarms, at 5:30 on the beautiful morning of Friday April 10, Eric and I will board our wide-eyed kids onto a big, real-life airplane, and we will try not to let anyone (especially each other!) see that we’re getting misty-eyed over seeing our beautiful girls so unabashedly and authentically and genuinely full of wonder, discovery, joy. 

Maybe. Juuuuussssstttt maybe. 


Oklahoma is the place to be!

18 03 2015

Theres an event next month. In Oklahoma. For folks with porphyria and their families. I’ve wanted to go, but I’ve been afraid to try to go, because everything’s been a failure as late and I can’t take failure anymore. 

But my friends want me to go. I want to go because my kids will meet other kids affected by porphyria in their life somewhere. Because my husband will meet other husbands of porphies. Because my family will get a break from the struggle and grind of everyday life with a sick mom. Because my kids have been begging to ride on an airplane.

My friends want me to go so I can network with other porphies, learn about the latest and greatest in porphyria land, and meet with the expert who will be there for a Q&A. 

So they set up a fundraiser for me, and at just two days in, I’ve almost got half of what I need. I’m starting to let myself think the trip will happen. STARTING TO. If I don’t get enough, I’ll at least pay a medical bill with what was raised. Which is something of significance. 

Here’s the grit on the event in Oklahoma. 

And here’s the link to the fundraiser. 

If my lovely followers would pass this link around the world and back, I’d be ever so grateful. My friends love me so much, and they remind me to take care of myself first. I have a hard time with that, as most of us with spouses or children or jobs or commitments do, but it is NOT AN OPTION, ok? Remember that. It is an ABSOLUTE. The simple fact is: if I stop taking care of myself to take care of my kids first, I will get sick and not be able to take care of my kids at all. If you don’t take care of yourself, you will crumble. You know that. SO DO IT. Like I’m doing it. By asking the world to give me a couple of dollars, per person, to help me get to the place where I may meet people who can help me find a healthier, happier quality of life. 

It’s certainly not easy, asking for help. In fact, for many of us, it feels damn-near un-doable. You’d rather crawl into a hole in the ground than ask your friends for help. (Especially monetary! Shudder.) But trust me: once you get past the initial horror of the ASKING part, I bet you’ll be shocked at how easily people oblige. People are inherently good (or I choose to believe they are, anyway,) and want to help whenever they can’t. They just don’t know how or when, unless you tell them. How often, when you’ve updated your Facebook status to let everyone know you’re back in bed or in the hospital or having the toughest day ever, have your friends said “what can I do to help?” Probably fairly often. 

Guess what. They are sincere, the lot of them. Instead of saying “oh just keep me in your thoughts!” or “thanks but I’m hanging in there!”… how about saying “well, a meal would be great. I’m too tired to cook. Would this weekend work?” Or what if you said “I’ve been in bed for three days and the kids have nothing to wear! Do you think you’d be able to come over this afternoon and maybe throw in a load of laundry?” 

Sounds uncomfortable, doesn’t it. 

But it doesn’t have to be. Your friends will be happy to help, most likely, just as you’d be happy to help them. 

And the upside to this is that you have one less worry, a bit more rest, and some energy to put into something that counts. Like your kids, your spouse, your job. And there’s certainly no shame in that. 

Sending you all love and light! 

Oh…. Yeah.

13 06 2014

There’s this thing I forgot all about. You know when you forget stuff that you think should be important enough to remember? Like the year you got married, or a fifty dollar bill in a coat pocket, or how much you used to love studying British literature because of that one professor who made it come alive…
This thing I forgot, it got lost. In porphyria. In motherhood. In budgeting. In laundry. In potty training and breastfeeding and doctors appointments and pain and stress and fatigue, in wine and Cymbalta, in isolation and play dates.
But, y’all: I remembered it last night.
What I remembered is: that music is at my cellular level. It is my stardust. I am made of it, and it of me. It tingles through my tissue like blood pulses through my veins. It is home to me. It is The Thing. Of my life. My Thing. And for years I was intimidated away from letting it happen, and had excuses of no time, not the right people, not the right equipment, no money, a disease, kids… All this shit that in my mind meant that I’d missed my boat and that was that. I lived ten years thinking I failed my potential. It never occurred to me (and WHY DID IT NEVER OCCUR TO ME) that I did NOT miss my chance. I’m not too old. Too tired. Too busy.
I remembered last night that making music wakes up little tiny places in me that have been dead for the longest of time. Like, I sat on my foot for ten years and it went numb, and last night it finally dawned on me to just stop sitting on my foot, and the feeling came back. And it was uncomfortable and tingly and tickly for a few minutes and I couldn’t put weight on it, but when the blood filled up the space again, I was all like “oh yeah! I have another foot! I can walk!”
It was like that. I found my other body part that had gone so numb it disappeared from my psyche. And can I just say, ahhhhhhhhhh.


Addendum to Friday night’s post.

13 04 2010

Like I said.

Money makes the drugs makes the world go ’round.

Read that.

And hmmph.

Dr. Porphyria Himself: Part Two.

12 11 2009

The Appointment is now a thing of the past. The good news is that while having lunch at the posh eatery, I spotted some sweet, beautiful, holy sweet potato fries on the menu, and Eric and I decided that would be my post-visit reward.

We went back up to the office at 12:50, and were called back at 1:15. For my 1:00 appointment that I showed up at 10:30 for. I guess 15 minutes late isn’t so bad, except I knew once I was “in,” I’d sit on the table and wait for another 30 cold, boring minutes. I had my weight and height checked: Still 5’5″, and up to 118.3 lbs! My BP was 124 over 70, which was excellently high (for me) and normal (for the general population.)

After a 20 minute sit in the exam room, a nurse practitioner entered and asked why I was there. I told her I was hoping she could answer that for me. So I explained the history, and at first she was skeptical. I could tell. When I told her about the red pee in the hospital, she tried to blame it on a bloody bladder infection that was noted in my records. I had to point out that it was in fact suspected at one point that I had UTI, but it was ruled out. Which I knew, because I had spent the entire evening before pouring over the medical records from the hospital with a red pen, making notes beside each bit I disagreed with and thought was incorrect. Like the part about “Patient is a 29 year old white female [I agree with that,] who appears uncomfortable and complains of mild pain.” WHAT!??! Mild pain my ASS! Appears UNCOMFORTABLE! So, if screaming and begging to die is complaining of mild pain, I’d hate to see what it looks like for someone to complain of severe pain.

OH! Another story, related to the medical records:

I read a part that the same idiot mild-pain doctor wrote that said “Endoscopy reccommended, and the patient received endoscopy on 9/29/09.” I don’t recall ANY talk of an endoscopy, and I’m puh-retty sure I’d remember such an event. (Endoscopy is the act of shoving a camera on a tube down one’s throat and into the intestines and stomach to explore for goodies.)

Just to double-check, I went to Eric and said “So, this idiot doctor wrote that I had an endoscopy! Isn’t that crazy? I never had an endoscopy, did I?”


“Uh, yeah.”

Oh shit.

“Yeah, the surgeon came in on Sunday and we all talked about it a lot and thought it’d be a good idea, so they wheeled you out on Tuesday and you had it done. I waited in your room for you, and you seemed fully aware of what was going on.”

If I wasn’t before I’m now a true believer in the fact that our brains block out traumatic events to protect us or something, because goodlordyjesus I have NO recollection WHATSOEVER of any conversation about an endoscopy, much less actually having the damn thing done! I realize I was doped up, but I remember plenty of other things from those days, like conversations with the hospitalist about it probably being pancreatitis, and Rose trying to tell me I weighed 50 pounds, and the nurses calling for security when Eric lost his shit after they gave me an aspirin for the worst pain of my life. It just completley dumbfounds me that I have no memory at all of the endoscopy.

Anyway, back to Dr. Mezey: After I finally sounded like I new my shit enough for the nurse practitioner to start actually feeling sympathy for me, she said, “Well, let’s see what the professor has to say,” and stepped out of the room.

Eric almost fell asleep in his chair while we waited, so I mad him get up and move around. He moved to the exam table, dangling his legs, while I sat in one of the chairs and organized my notes. My nose started feeling itchy all the sudden, so I scratched it. And rubbed a bugger right out of my nostril, which planted itself firmly on the outside of my nose.  “You have a bugger,” Eric said. “I know! You wanna get me a tissue instead of just sitting there?”

Of course, at this moment, the handle of the door turned.

“Help me! Help me!” I hissed, glaring at Eric, who sat paralyzed and giggling. The door swung open all the way as I tried to wipe my nose clean… with my right hand, just as the doctor extended HIS right hand to greet me. I was panicked. Eric had now managed to secure a tissue, but it was too late. The little thing had latched onto my right hand, and it wouldn’t budge.

I held up my left hand to shake the doc’s hand, and Eric stood up and turned to face the doctor, passing me the tissue behind his back.

So that’s how it started.

Good thing is, Dr. Mezey is old. I mean ooollldddd. So I have very little confidence that he caught any of that nightmare, and even if he did, he strikes me as the type of old man doctor who wouldn’t find it funny or mortifying, because a bugger is just another part of the glorious and fascinating workings of the human body.

He started off by telling me that he’s no expert in porphyria. Excellent. Glad I made the trip. However, he had seen a couple of porphies before, and he actually had consulted one of the US’s porph experts several times, so he did seem to have a decent grasp on the disease. He helped me find some alternative nausea meds to use in case of another attack, since the ones I’d been given previously were actually unsafe. The nurse practitioner would flip through my giant binder, (the one I’ve put together with all sorts of porph info that I’ll keep with me at all times from now on, in case of an emergency,) looking up drug names that he called out, to check to see if they showed up on the unsafe list. He also found me a non-narcotic pain med to try to wean to, in order to get off morphine. Other than that, he told me things I already knew, told me it looked like I was doing a good job researching things on my own, and told me to avoid triggers.

And that was pretty much that.

Life changing? Not a chance. But I didn’t really think it would be. Now I can say I’ve been to Johns Hopkins, and now I can move on. I’m figuring out (again,) that this is MY health and MY responsibility. Doctors can help me in an attack, but only if I tell them how to help me, and otherwise, it’s up to me to stay healthy and research triggers and keep diaries to see what hurts me.

We made our way back down to the first level, where the posh boutiques were (the kind where old ladies who wear hats shop for stuff to put in giant gold-gilded shopping bags and look burdened,) and we bought Adelaide a posh present from a posh baby boutique, and I ate  posh sweet potato fries. And then put on my hat.