Nuvigil Update

When you last heard from me—if anyone is even paying attention, and this isn’t just my public journal—I was about to start Nuvigil in an attempt to vanquish the Rip Van Winkle-esque state I’ve been existing in for I-Don’t-Know-How-Long. True to form, it’s been about a month. When it comes to blogging, I’m nothing if not consistent.

Anyway, Day 1 on Nuvigil was AMAZING. I took it in the morning and was on fire. I stayed up all day, cleaned the house, was patient with the kids (remembered why I wanted 5 children to begin with), caught up on laundry, scheduled a dinner date with a friend and just felt like my old self again. I felt 22 instead of 82. I’d forgotten what it was like to be human until that day. Day 2 was equally productive.

Wow. Was this really all I’d needed for so long? A little “surfboard-shaped pill”, as Monster would say. Maybe going back to school was within reach. Maybe having another baby was doable. I guess I should note that the first 2 days weren’t without side effects. Both days, I had a dull but consistent frontal headache the entire day, very little appetite, mild to moderate nausea and significantly increased acid reflux. However, I was willing to swap the dead-tired feeling for these.

The headache was the worst on Day 3 and I ended up taking 2 doses of Relpax and some Reglan for nausea. I also didn’t feel very energized, which invoked immediate fear that the medication had failed. I found that I felt better when not upright, so it may have been that I was more POTSy/dehydrated after running around for 2 days and not eating. I tried to ride it out. I rested and waited impatiently. I sipped Gatorade and did shots of Maalox to settle my stomach.

The next few weeks were tough, physically and emotionally. I never had any more days like Days 1 and 2 on Nuvigil. I tried being neurotically consistent with my sleep schedule, my asthma medication, my long-acting opioid—hoping, hoping that one of those was the key to getting back to good. Nope. In addition, my daughter went through a tough medical procedure.

Feeling completely helpless, I stopped taking the Nuvigil entirely, started senseless fights with Cam and resigned myself to a life of exhaustion. Then, in a moment of clarity, I called my psychiatrist. My psychiatrist doesn’t do much for me these days—we check in twice a year, he writes refills for my Cymbalta, lets me vent for 30 minutes. I started seeing him because I couldn’t close my eyes after Atiyyah died without picturing the moment of his death. That was horrible. In contrast, the Nuvigil situation isn’t so bad.

So my psychiatrist saw me the next day, suggested talking to the doc who prescribes the Nuvigil about a dose adjustment and also suggested changing the timing of my Cymbalta dose from PM to AM. Maybe, he theorized, I’m getting walloped with it first thing in the morning and that’s either causing or exacerbating the hypersomnia. And since I was a bit on edge that day and having a hard time with recurring thoughts of my children dying, he added Wellbutrin XL, an antidepressant offering good coverage for anxiety. It has the adding bonus of being “activating” so maybe it would keep me awake, too.

Things have settled down. I’m awake-ish. I’m sure the Nuvigil has some benefit, as I haven’t had those scary falling asleep driving moments. I’m hoping to get more info from the MSLT on October 1^st and fine tune the meds. So all in all, Nuvigil is no panacea, but it ain’t half bad.

I hope you’re all well.

-Xan

Oh yeah! Before I forget…I stumbled upon (without the use of stumbleupon), a fantastic site called Band Back Together. It’s a compilation of writings and resources about everything. The underlying message is “We are none of us alone.” So not only is it a veritable information clearinghouse, it’s an incredibly positive, supportive community. There was recently a submission about Ehlers-Danlos, which is how it popped into my inbox via Google Alerts, but it’s fabulous. I encourage all of you to read, comment and WRITE. I submitted a piece recently about my daughter, so perhaps I’ll let y’all know when it’s going live. Until then, I’m With the Band. I hope you will be there too. <3

A Birthday

August 10^th is Atiyyah’s birthday. He would have been 9. Old Boy and I brought flowers to the cemetery for him. We shouted “Happy Birthday Atiyyah” as we drove out. While we were at the market buying the flowers, Old Boy happened to tell the florist that it was someone’s birthday today. She must have thought it odd that I shushed him. I felt bad doing it—I like to let Old Boy speak freely about his brother. It was more for the florist’s sake, to save her from that awful moment when the bouncy little 6 year old says the bright flowers he and his mom picked out with such care are actually going to be laid atop the grave of his dead brother. I’d rather she think I’m a jerk than ruin her day with thoughts of us spending ours in mourning.

But as time has passed, the days, even the birthdays, aren’t as sad. Sometimes the grief still swallows me, overpowers me, but today I just enjoyed the sunshine.

Still…I wish you were here, buddy. I miss your sweet face.  

What I've Been Thinking About

Maybe it's something about turning 30, but I have this urge like never before to have a baby. No, not just to have a baby, to have a baby. There, I said it. It doesn't mean I'll actually do anything about that—since that would require a lot of planning, given the sort of relationship I'm in, but I feel it deserves some attention.

Let me back up. When I was first diagnosed, I remember sitting in the office of the esteemed shoulder doctor, my head swirling with questions, hands shaking as they clutched the handwritten lists I'd written but forgotten. My eyes quickly shifted from the brilliant x-rays illuminating my useless bone held together by titanium plates and screws to the surgeon's white coat and kind face to the door. I wanted to run, to escape the future, to forget the words I'd just heard.

“What do I do now?” I stammered.

“There are support groups,” he said. “See a genetics counselor if you want to have a baby. We can talk about what to do if you need more surgery...”

No, no, NO!!

I wanted to scream, to shake him, to tell him that I didn't care about surgery or a baby, that I was 19 and that all I wanted was for him to be wrong. I've been told that my face doesn't mask emotion well, so I'm sure he got it. I know Cam did. We drove the 2 hours home in unusual quiet, occasionally making small talk.

Over the years, Cam and I talked about having a baby, but as my body got worse it seemed obvious that a pregnancy would be hard for me. Not that it would have mattered—since Cam was a little girl, she's wanted to have a baby. She carried the Poodle and her pregnancy was wonderful. I never felt I missed out on anything. Until now.

Cam thinks she might want another baby “in a few years.” Until recently, I was perfectly content, but now I am struggling. It's new. Foreign. We talk about it, but it's painful.

I don't want to give the wrong impression here. Adopting my older children was an amazing journey. I was blessed with four precious beings that I treasure each day. When I think of them, especially of Atiyyah and Miss Puggles, whose birth parents I do not know, I often think there was some sort of mix up that led to their being born into the wrong family and just taking a little longer to get to us. Since I know Old Boy and Monster's biological mother, I feel a little differently—mostly thankful. She gave us the most selfless gift of all, the gift of our boys.

It's not that I don't want to adopt another child, it's just that the internal voice won't relent. That damn maternal instinct (which should be satisfied by parenting four children despite the constant gnaw of pain and pummel of exhaustion) screams, “Time to have a baby!”

And what about that EDS anyway? I may catch some flack for this, but even if the stars were to align and my hips and spine were in good shape to carry a baby and I were off the cocktail of pharmaceuticals, I feel uneasy when I think about knowingly passing this on. Yet I feel just as badly about knowingly saying, “Uh-uh” to the little EDSers-to-be during a potential genetic counseling appointment. What if they had my eyes? My mind? My...? (And this from a staunch defender of reproductive rights. Do you see the mayhem that the big 3-0 has brought to my mind?!)

It's all hypothetical...if that. I will never be able to have a baby. This body barely holds itself together enough to support me, let alone me +1. I've known this for years. I'm fortunate that I have 4 living children. I'm fortunate that I have a partner who could potentially carry another child. I will never be able to have a baby. I've known this—somewhere within myself—for years.

Why then, does typing it bring tears to my eyes?

Unprepared

So yesterday I implored the general public to be generally nicer...and today it happened. So you'd think I'd be prepared, right?

In the words of my 3 year old, “No, nope, never.”

I was actually outside the preschool of said-3 year old when it happened. It was 20 minutes before closing and I had been driving for an hour, having left Old Boy's outpatient OT appointment right at rush hour.

Puggles and the Poodle were sleeping in the van.

Monster's preschool is in a large building in the back of an old mill complex. Since there is no view of the parking lot from his classroom and picking him up is often an unnecessarily long process fraught with odd rituals and delays, I am uncomfortable leaving the two little ones alone in the car.

Since I can't walk well and neither of them can walk at all, the only choice the three of us were left with was to use the double stroller. Luckily, our double stroller is light (enough). However, I was completely exhausted, so the thought of lifting anything more than a banana felt overwhelming. And I knew that getting the stroller out was only the first of several undesirable steps including probably waking two children, rushing in to pick up my anxious toddler (who hates being picked up when “the sun is sleeping”), then repeating the whole process to get back into the van and home.

I must have looked as tired and miserable as I felt at the moment that I opened the rear door of my mini van and pulled out the stroller because another mom a few cars over asked, “Do you need some help?”

I was so taken aback by the question that I didn't quite know what to say. I'm fairly sure I stared at her blankly for a moment.

 

--Am I dreaming? Is someone actually offering help?--

Of course, I graciously accepted stammered something unintelligible before saying, “No, I'm ok.”

She gave me a look of complete non-belief.

“I just have to pick up my son,” I continued, as though the sling, brace, limp, and obvious exhaustion were commonplace... “My two little ones are sleeping and I have to bring them in with me. It just takes a little longer, that's all.” Oh lies, lies, lies.

“Oh, ok,” she said, probably half-relieved and entirely confused. “It's just that you look so--” Disabled? Exhausted? Forlorn? All three? “But as long as you're alright.”

“I'm alright,” I parroted. “Thank you, though.”

She drove off and I slowly got the little ones into the stroller, managing to keep the Poodle sleeping and Puggles hooked up to her feed. I hobbled in to get Monster, who ran happily to meet me, which temporarily eased the exhaustion. I gladly chatted with him and piled everyone back in the car in what I felt was a reasonable amount of time.

Still, I could have accepted this kind stranger's assistance. I could have asked her to stand with the kids for a minute or to run into the preschool for me, or something. For goodness sake, I'm a mom and beyond that, I'm human. If I had seen anyone in the shape I was in tonight, I would have offered to help them--and not just out of obligation, but because I'd genuinely want to do so. Instead, tonight I was just too me—shy and stubborn and independent and leery all rolled into one.

Jeez. No wonder people drop the door on me.

Week in Review, My Thoughts on Public Hobbling

 

This past week has been crazy-busy with appointments of every kind for me and the kids. We also seemed to have wrapped up the week of stomach-yuckiness, until I was stricken yesterday afternoon. I think I made out much better than my poor kids and wife, though. Everything has stayed in, perhaps as a result of the many painkillers, but I feel gross. Thankfully, the big guys had school today and Cam took the Poodle out with her, so Puggles and I just maxed and relaxed. It's funny—Puggles is exclusively tube fed as a result of her genetic disorder and dysmotility. (I will eventually get her blog to be more than a figment of my imagination), but I swear sometimes she wants to eat. Either that or she's teasing me. Today, as I was forcing myself to eat Saltines and sip ginger ale so that I could take my regular meds, she was practically wiggling out of her seat whining at me. Out of common courtesy, I offered her a cracker. She looked at me like I was crazy!

So aside from my current stomach woes, I've actually been getting out of the house recently—to places other than the hospital and pharmacy, no less. It's still a work in progress. Some days I feel fabulous. On Sunday, we had the Poodle's birthday party, and I had so much fun.

We have some pretty awesome friends and family. One of Puggles' little friends, Skye, came over after the party with her parents, and we all enjoyed feeling normal for the evening.

I notice now when I go out in public (right arm in sling, left in brace, limping with a crutch), I'm met with one of two reactions:

1. The Over-Reaction
   People keep their kids away from me and generally treat me like I'm dying. Also, like I'm deaf. A very strange conversation took place behind me at Stop & Shop. It was between two women trying to figure out how to pass me in an aisle and was **VERY** dramatic. I felt like turning around and informing them that I was able to hear them or like whacking them with my crutch as they attempted to rush by. I didn't.
2. Complete Ignorance
   People either have no common courtesy, are completely oblivious to what goes on around them or think that a person with a physical disability would be appalled at any offer of help. This past weekend I went to Old Navy to get a Halloween costume with Old Boy. After shopping for a while and standing in line, he was even more wired than usual; I was even more tired. We walked to the doors with a group of people no more than three feet behind us. Instead of taking a step forward to grab the door for me as I struggled with a large bag, a crutch, a heavy door and a hyperactive child, the group pushed into us and huffed.

For cripes sake. It isn't that difficult. To the over-reactors: If I were in some critical condition, it's unlikely you'd find me at the grocery store or Old Navy. You don't need to whisper near me or avert your eyes. To the second group: have some decency. I'm not suggesting that anyone make a big show out of helping a person with a physical disability if they appear to be doing fine on their own, but if someone seems to be struggling, it doesn't hurt to ask if they need a hand. Furthermore, this doesn't just hold true for a person with a cane, but for any person. (After all, I'm still disabled on days when I'm not wearing the sling and using the crutch.) What's the worst that could happen? You might get snapped at. But chances are, you won't. And as a person with a crutch, I've really appreciated door-holding recently!

So overall, a pretty good week. I actually had two very productive appointments with new providers (for myself.) I have a great deal of anxiety when it comes to seeing new providers, especially since I am prescribed a lot of pain medication and have had some unpleasant experiences along those lines. To my pleasant surprise, both the neurologist and the gastroenterologist took the time to research EDS and were thoughtful and kind. Wow.