Sunday, August 28, 2011

Don't Know What You've Got ('Till It's Gone)

Earlier this month, I went back on Adderall, which my internist prescribes off-label for my intense chronic fatigue. I stopped taking it in January after one of my specialists suggested it could be the cause of my frequent headaches. (I also went off pain killers at that time.)

Apparently, in the seven months or so I stopped taking it, some kind of shortage developed. The pharmacists can't tell me if the manufacturer of the generic has cut back production or what, but they haven't been able to fill my prescription for the last three weeks. 

It's complicated by the fact that the only place I can actually afford to fill the prescription is at Costco, and it's possible that it's a distribution issue limited solely to Costco. Or that the high demand for it at the retailer who charges literally half to a quarter of the price other local pharmacies charge is keeping them from satisfying demand. (Costco charges me just over $26 for a 30-day supply of generic Adderall. My usual pharmacy charges $70. When I called around to see what other pharmacies charged, it ranged from that $70 to $107.)

When I quit taking it, I'd just refilled my prescription so I had a 30-day supply on hand when my internist gave her approval for my resumption. I wasn't worried when Costco told me the first time I went that they didn't have enough pills to fill my prescription. After all, I had plenty at home to get started on and I figured they'd get a new supply within a few days. 

But they haven't. And they tell me it's back-ordered and they don't know when they will receive more. 

So I looked at my dwindling supply and decided that I needed to save the 17 I have left for "special" occasions. Like Ellie's first day of first-grade next week, when I want to go along for drop-off. And I'll need that artificial energy boost to survive travel to and from Chicago later this autumn. 

So I stopped taking it on Friday. And while Friday itself was manageable -- aided by the fact that I didn't have to leave the house -- I really started feeling the loss yesterday, when I pretty much needed a nap when I finished breakfast. 

The irony is that the Adderall doesn't give me a huge boost. It's actually somewhat disappointing since my fantasy was that it would make me feel fully human again with a normal (whatever that is!) sense of energy, and it definitely doesn't. But it gives me enough improvement that I can do something, even if I feel drained, at least for a couple hours. Funny how the improvement felt negligible until it went away, and then I realized how much improvement I'd had.

Googling the issue suggests that there has been a shortage of medicines like Adderall since sometime in early spring. Apparently the Drug Enforcement Agency is limiting some of the raw materials used to make the meds as part of its efforts to combat prescription drug abuse. (See news story here.) Since the shortage was supposed to only last a couple months, I'm not sure why it's still a problem. But it apparently is.

Tuesday, August 16, 2011

But Some Things Never Change

So there I was feeling somewhat optimistic and making plans for the future -- a trip to Chicago, an Etsy store, who knows what else? -- and then the same thing happened that always seems to happen when I start feeling optimistic: 

I ran into a big brick wall that I never saw coming although, in hindsight, there were warning signs. I just ignored them, preferring to live in blissful ignorance. 

You see, apparently my body has decided that if I'm going to choose to ignore my fatigue and pain and "push through" it, it will simply multiply exponentially how much fatigue and pain I have.  

Somehow, I think I've taken that lesson several times over the past few years; it has a familiar feel to it, a definite sense of deja vu. 

So, after more than a week of essentially hibernating, I'm poking my head up online again and hoping I can find some semblance of balance again. 

And I'm a bit worried about that trip to Chicago ... 

Meanwhile, the hematologist has run a battery of blood tests on me to see if he can make sense of some "interesting" results on tests run by my neuromuscular neurologist, who out of the blue requested that I come see him again. My understanding was that I wasn't due until December, but his assistant has scheduled me for next week. And my ferritin levels have apparently petered down to just above the level that my hematologist wants to give me infusions to send it back up to healthy levels. (It's been about two years since the first round of infusions that I'd hoped would be a one-time experience, although it was a fairly painless experience, especially when compared to all the chemo patients I saw in the clinic.)

And I guess I'm back on the medical-mystery merry-go-round despite trying to jump off. Which means this blog won't be switching over to a crafty mama blog anytime soon. :)

Monday, August 15, 2011

Ch-Ch-Changes, Part One

I wrote this post about two weeks ago, and then was waiting to find time/energy to upload some photos with it. Of course, then I flared and pretty much disappeared off the web.

Ch-ch-ch-changes ...

In most ways, nothing has changed here in Sick Momma-Land: I'm still trapped in limbo without a clear diagnosis; I continue to be intriguing to (some) doctors because of my tantalizingly abnormal labs that indicate something isn't right with me but diagnosis eludes them; I still search for that elusive balance between taking care of myself and being a good parent and spouse.

So what's changed?

I find myself infected by a meme I keep finding in various places on the Internet: the choice to push the boundaries of life with a chronic illness and to stop putting everything off until the illness goes away.

It is a fine line, of course, to do more without making oneself sicker by doing too much.

I'm mostly taking baby steps onto the tightrope as I try to find my center of gravity, and hoping that my safety net is securely in place as I occasionally make the inevitable stumbles.

I'm trying to face my fears of trying things I know will be challenging. In April, I went along for the four-hour drive to visit my inlaws for a weekend, and while it confirmed I don't travel particularly well anymore, I learned an important lesson: I need to schedule longer trips so I actually have some time at my destination that I'm not flared. In other words, I need to build in rest days/periods.

We will test that out this fall when we go to Chicago to visit my family for the first time since before I got sick. In fact, it was on June 5, 2007, that I woke up in the wee hours intensely ill with what started as bilateral pneumonia and turned into my mystery illness. We'd been scheduled to fly that day to Chicago to celebrate my eldest niece's high school graduation, and since I literally was unable to sit up much less get out of bed, we canceled the trip at the last minute. 

I have tentatively planned trips there since, but haven't followed through. This time, we've got the plane tickets bought ... and I'm hoping that there isn't a jinx that will force us to cancel this trip too.

Other changes?

I have increased the frequency of acupuncture appointments. And I think it's helping with my energy levels, which have a greater impact on me than my pain levels.

Also, I've found a new hobby since I fear I will never have the energy and stamina again to make quilts. It has some of the same appeals -- pretty fabrics, the ability to play with color, the sense of creating something -- but is on a much smaller scale so that I can accomplish something in the 15-30 minutes I'm able to spend before my hands hurt too much. 

I'm making fabric flowers that can be made into hair pretties for the young crowd and things like brooches or purse decorations for the grownups.

I'm still mastering the techniques, of course, but my quality assurance tester and model is delighted by them. And she tells me that they are much admired by her friends, so I have fantasies of someday having enough stock to open an etsy shop and sell them. :) In the meantime, I have a girl who is loving the test models and I hope to get them perfected enough to give them as gifts and maybe to donate for the school auction. 

One wasn't enough, but she thought three was almost enough. :)

Please ignore the messy counter and fridge behind her!
I also participated in a six week workshop on parenting wirh chronic illness led by  the awesome Maria of My Life Works Today. I wasn't sure going in what I'd get out of it, but it  was definitely worth the time and I felt like I made real friends who grok what it's like to live this life.

I love the support I've found online in so many places; the online chronic illness community has been a godsend! But it's also wonderful to get to hang out in "meat space" and have the kind of free flowing conversations that work best verbally. It was hard sometimes to drag myself out for a two-hour session when I was home already feeling drained and exhausted. But even though the sessions tired me out more, it was a "good" tired. (Of course with three spoonies involved, there were a few cancellations. I think it took us eight weeks, maybe nine, to do our six sessions. But it was a wonderful, wonderful experience for me.

Meanwhile, I will try for one more change: to become a more frequent blogger. I'm not sure how it got to be so long since my last post, but I'll be trying to do better. :-)

Hope all of you are as well as possible.