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?

the good, the bad, the ugly, and the uncertain

The good: I decided to take up running again, and it went really well at the start. Within a few runs, I was able to run 2 miles without stopping, and was averaging over a mile of running each time.  My short-term goal is a little over 5K distance, and my long-term goal for a year from now is The Great Cow Harbor 10K.  I'm supposed to be running 5.3K (3.3mi) in a relay team for the Town of Huntington Sprint Triathlon, and that was looking really promising this time last month.

The bad: Between TS Irene, shin splints, and Susannah starting kindergarten, I haven't run in almost 3 weeks.  The triathlon is 12 days away.  I was proud of myself for going 2 miles without stopping, but on the flip side, I've hardly run 2 miles without stopping...that was before the hiatus!  I'm afraid I've really set myself back now.

The ugly: My left knee decided to revolt last night, and unlike my typical RA joint pain that tends to be better by the morning (or, should I say, after my joints loosen up), it is still swollen.  I've iced it, rested it, elevated it and had it in a compression sleeve all day.  Still puffy, still sore.  So I'm thinking that I've actually hurt it and that it's not just RA pain.

The uncertain: I thought for sure at first that I would be able to throw up my swollen middle fingers at RA and say, "Fuck you, my lower body is strong enough that I'm going to run 15 miles a week, and it's gonna be awesome!!!"  Now I'm thinking that I'll have to very humbly apologize to my body for being so reckless.

Oh, and just for an added bonus, my inner upper gumline, my hard palate, and the back of my lower gums are like a big minefield of sores.  You would think that this would at least help me lose a little weight since eating is so painful, but no luck there - I've got eating more than covered!  I've been stuffing my face with soft things like bread and pasta since I feel like I'm going to vom if I don't.  Yeah!!!

Dr. Rheumy told me at my appointment two weeks ago that I could quit the MTX, since I've officially "failed" the treatment (I'm not noticing a difference in my symptoms this time around) and should be starting Enbrel soon anyway.  I'm too scared to discontinue for good.  Now I'm not so sure why...surely untreated RA isn't as bad as unresponsive RA coupled with unrelenting nausea and what seems strangely akin to leprosy in my mouth.  (Sorry to anyone out there suffering from leprosy - though at least there is a cure for it that the WHO will provide free of cost.  I wish there were a free, readily available cure for autoimmune disease!)

Why am I torturing myself again?  I can at least answer that question: because of that pesky little thing called hope.  Deep down, under my pragmatic cover, I am a hopeless dreamer.  Maybe - just maybe - the MTX will suddenly start to do something.  I've only been back on it for 8 weeks...maybe it is just taking my body a little longer than usual to respond to it.