Wednesday, October 19, 2011

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?

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