this much concentration may make my head explode

I had a post all planned out (well, loosely outlined in my head) about my rheumatology visit today and I was really looking forward to it. I was going to gush about how Dr. Awesome is pretty damn near being my favorite health care professional of all time, next to the labor & delivery nurse who got her other patient covered to ensure that I got the drug-free birth I wanted. I don't even remember her name, but I'll never forget how she spent the last hour - which was the majority of Emily's labor - coaching me through it. (I still can't decide if it would be classified as precipitous labor since I had not only contracted uselessly for weeks beforehand, but also had the occasional painless contraction once my water broke in the wee hours of the morning...since labor didn't start until six hours after that, and then lasted about an hour and forty-five minutes, I think I can claim it. For the record, it was pure insanity. IN-SAN-I-TY.) Without her I think I would have completely fallen apart...for real.

Then the migraine that's been torturing me like a schoolyard bully became worse again. It keeps teasing me, backing off and lingering right around the corner before jumping up and punching me in the face.

So not only is it exacerbated by the eye strain that comes with sitting in front of a screen and scanning back and forth as I read, but I'm also in a perco-fog after finally yielding to its half-hearted promises of respite from the pain. It took an entire episode of The West Wing to muddle my way through that first paragraph.

(For the record, I'm not writing this in an attempt to garner sympathy; we all have our issues to deal with, whether they're physically painful, mentally taxing, emotionally draining...or not that affecting at all. To put it simply, if I don't get mine out and try to at least lighten them up a little, I won't be able to focus on anything else.)

I was sadly excited to write all about why Dr. Awesome is so awesome, but it'll have to wait another day.

I've been laying pretty low on my alcohol consumption and drinking a literal gallon of water every day in the hopes of discouraging the migraine from beating the hell out of my brain, but since, as one of my chronically awesome friends put it...

@cakeumms Because migraines are assholes. *hugs*
— Jenny (@jenrobinegan) April 22, 2013

...I'm just going to indulge anyway. Can't let them take away everything that I look forward to.

return from hiatus

Is a hiatus still considered to be a hiatus if it's lasted for 17 months? As I pondered that earlier, I remembered that Family Guy was off the air for nearly 18 months before it came back, better than ever. Then again, it was canceled and then revived, it wasn't just halted for a half a season. Obviously nobody's "canceled" my blog or forced me to stop posting; I've just become so busy with life that I've lost all motivation to write about it.

A friend of mine - who blogs for an Irish e-magazine and actually gets paid to write about her life - told me one night recently that she had read through my blog, and thought I was a decent writer. The idea has been pushing its way into my thoughts when I read blog posts from others, and particularly when I feel the need to blather on about my various ailments without shoving it in everybody's faces on Twitter and Facebook. Living a chronically ill life is isolating at times, and although there's a great community of chronically awesome people on Twitter, I don't think it's necessary to bombard them with every last detail.

Writing this blog gives me the satisfaction of a one-sided phone conversation without the guilt.

In other words, I'm back, just like Family Guy. (Let's pretend it just came back now rather than 8 years ago.) Not necessarily better than ever, but I'm back nonetheless.

Here is an update from my last post, in bullets this time:

• I didn't get into nursing school. I did take some more prereqs, but that's where I left it. I'm okay with this right now. Gives me room to explore other options.
• I did run that 5K distance! In fact, I ran in a timed 5K last May, and did it in 32:33.
• I have been on and off Enbrel for 18 months. I've taken a week or two off here and there for various mild illnesses, 4 weeks off this past summer due to an antibiotic-resistant jaw infection (3 antibiotics and no improvement until urgent oral surgery to remove the offending cyst), 6 weeks off in December and January while I fought some upper respiratory infections, and a self-imposed break because I've been getting facial rashes that could have been related to drug-induced lupus. (They don't seem to be, at least I haven't heard back regarding my latest bloodwork.) I haven't been on MTX since mid-December and I haven't decided if I want to go back to it.
• I found a new rheumatologist after being seriously dissatisfied with my old one, but that's a different post for a different day.
• Susannah is 6.5 now. Emily is almost 4. The party we threw for Susannah's 5th birthday turned out well; Emily is still not fully potty-trained. Funny how certain things go by so quickly, and others seem to drag on forever.

In a nutshell, some things are the same, many things have changed.

Oh, and it was snowing on the second day of spring. Bizarre.

all we need is just a little patience

This seems to be the underlying theme to my life right now.  I thought it would best be summed up in bullets, to avoid rambling, but I ended up with big blocks of painful-to-get-through text. (Kind of a shame, cause I like making lists, shocking as that may be to those who know me well.  I may be disorganized, but it's an orderly sort of chaos.  Or something like that.)

In no particular order, here are all the things that I'm white-knuckled over - for the immediate future, at least.

I submitted an application to a nursing school; more specifically, a one-year program for people who have a bachelor's degree in another field.  The deadline was October 17th (I submitted it on the 11th, go me!) but I don't expect to hear back until around Christmas or so.  Some days I think that I have a good shot at getting in, others I think there's no way they'll take me.  Mostly, I obsess about it regardless of how good or bad my feelings are regarding my chances of being accepted.

I've been having excruciating pain in my shins and calves after I run.  As soon as I start, I can feel some pain, and then it just gets more and more intense until I feel like I'm plodding along while someone wails on my legs with a crowbar or seven.  Post-run stretches are like torture sessions.  I am still trying to get to that 5K distance (my team was bumped from the triathlon, much to my relief) and I'm going about it in a smart way, by trying to increase my distance by 10% per week.  I can't get past 2.15 miles or so because I keep having to take breaks over multiple days in order to let my legs feel better.  On top of that, life is too busy for me to be able to even get out there to give it a try.

I started Enbrel injections three weeks ago today.  Dr. Rheumy told me that it can take a few weeks to see results, but he seems optimistic that it will help (as per our conversation mentioned in this post, where he advised me to go off MTX) so I have been trying to remain optimistic.  So far, no difference whatsoever.  I have not discontinued MTX because everything I've read says that biologics work better when paired with it.

After reading many stories from other Enbrel patients, it sounds like there's no rhyme or reason to who responds to it, who doesn't, and how long it takes.  Some people feel a difference in their symptoms within a day or two, some feel a significant difference by the three month mark, and it is not "clinically effective" for about a third of RA patients who take it.

I don't know how long Dr. Rheumy wants me to be on it before we decide if it's working, and what criteria he will use to make that decision.  Will it be a reduction in my RF and/or anti-CCP levels, relief from the symptoms I have, or both?  I want to know as soon as I can if it would be better to move on to another biologic and see if it works better for me, but, again, this isn't something I will have an answer to until around Christmas.

I had to skip this week's Enbrel dose because I'm coming down with some sort of cold or upper respiratory virus.  (I stupidly told myself it was a "chest cold," which of course guaranteed that I would feel like my head is filled with cotton by this evening.)  I called Dr. Rheumy's office today to ask if I could take it this week, and he wants me to skip it until I feel better.  So that's one more week of waiting to see if it actually works for me; one more week before I can try something else.  I know a week doesn't sound like a long time, but I want to be able to sleep without being woken up by hip pain, I want to sit in any position I feel like without having painful stiffening of my ankles and knees, I want to be able to do things like type on a computer and knit without my knuckles feeling like they're on fire!

I want, I want, I want, and I want it now!!!  (I would stomp my feet, but I'll be feeling it in my ankles all night if I do that.

Susannah's 5th birthday party is in a week and a half, and so far I've only heard from 4 out of 24 parents of kids who were invited.  Only one of those is a yes.  Trivial, maybe, but I need a head count by Tuesday and I want her to have a decent turnout.  Ten kids (the minimum that I need to pay for) would be ideal - less money for me to spend - but what if we only get 3 in the end?  So we wait for those phone calls.

I am trying to get Emily out of diapers and onto the potty.  Enough said.

So...see why Axl Rose's voice is running through my head tonight?

murphy's law

The kids and I have been pretty active since Susannah finished up preschool and the summer officially began.  Lots of trips to the beach, even if just for an hour or two, some time spent at the playground, a trip to the mini zoo and a little swimming in the pool at my mom's.  My body has been behaving while we're out and about, even though I've had quite a few painful flares pop up in the evenings.  Overall, I haven't had too many complaints.

We have been taking it easy the past couple of days, which was supposed to give me some quality knitting time.  I actually finished up my first project in a couple of months last week, a Posy tank for Emily using Knit One Crochet Too 2nd Time Cotton in Avocado.  I decided to frog (that's unravel, for you non-knitters) a sweater I had started last year for my mom, since it was shaping up to be more fitting for me, and start over in a smaller size.  I figured I would at least be back to where I joined the neckline by the busy work weekend, which starts tonight, since I had all this free time on my hands and no plans to do anything more than take the girls to swimming this morning.

Of course, my right hand decided to swell every night this week.  Normally that wouldn't stop me, but I was actually getting a little clumsy with my needles, so I didn't want to compromise the finished product.  My left hand and both wrists are acting up too, something that doesn't happen nearly as often as the swelling in my right hand.

Now I am about to get ready for the start of a 6-shift weekend at work.  I work in a restaurant, so there's plenty of walking around to be had, and quite a bit of standing still, which is much worse for my hips and knees than the walking.  Aside from a flare last Wednesday night where my right knee painfully puffed up, the joints in my lower body have been feeling pretty normal recently.  Another "of course" - my left hip and knee have been on fire on and off today and I've been getting some lovely nerve pain all the way down to my ankle.

Murphy's Law is just plain evil.

today was a good day

My rheumatologist is usually booked 6-8 weeks out, so when I finally called a couple of weeks ago to schedule an appointment, the earliest I could get in was August 10th.  (He only sees patients on Wednesdays at this particular location, which definitely accounts for the wait.)  I don't know why I had never thought of this before, but I called this morning to ask about cancellations, and gave the receptionist my number.  I figured I would just call every Wednesday up until the day of the appointment to see if I could get in, but I happened to get in today.  Sweet!

I had to bring the kids with me, and they were incredibly good for the two hours we were there - including the five minutes I had to leave them under the watch of the receptionist at x-ray, since they couldn't come in there with me.  I had my appointment with Dr. Rheumy, a TB test, labs, and x-rays of my hands and wrists.  The new med plan is to continue my 15mg/week of methotrexate, then inject Enbrel 1x/week (pending the normal TB test, of course, since tuberculosis is one of the several serious infections a person on biologics is susceptible to), while adding in 1mg/day of folic acid and a prednisone burst/taper for the next 10 days.  I told him that Dr. Primary (did I mention I found a PCP?!) wanted to prescribe Prilosec so I could reduce the wear and tear on my stomach from Aleve, and he told me he had a coupon for a new drug (called Vimovo) that is a combination of 500mg naproxen and 20mg Nexium.  I'm sure in the long run, generic Prilosec and naproxen will save money, but the first time filling the Vimovo is free with the discount card, so I figure it can't hurt to try.  Then he sent me for a CBC, ESR, CRP, RF, CCP, and hepatic profile, just to see how things look compared to this time last year, when I was diagnosed.  (I was supposed to have the hepatic profile and CBC done every 6-8 weeks on the MTX...this is the first time it's being run since last July.  Whoops.)

All that boring med talk aside, I feel pretty relieved that I've got this appointment over and done with and that Dr. Rheumy didn't hesitate to move on to biologics.  I don't think another 8 week trial of MTX would have really done much other than confirm that while it seems to work to a degree, I still have plenty of pain and stiffness to go around.

The girls got rewards of a lollipop between Dr. Rheumy and the wait for labs/x-rays, stove-popped popcorn and Despicable Me after we got home, and  Ralph's ices after dinner.  If they were that quiet all the time, I would have to seriously think about a way to reward them that doesn't include pumping them full of sugar.  One thing at a time, right?

milestones

In about 9 hours, there will be two notable milestones in my life that are going to occur at the same time: my firstborn will be "graduating" from preschool, and it will officially be 2 years since my youngest came into the world.  My little girl is getting closer and closer to being a full-fledged school-aged child and my baby will really no longer be a baby.  Slowly but surely, my kids are growing up.