Obnoxious Bitch

Tuesday, May 17, 2005

Trying to catch up

I should have been making entries for the past few weeks, since there’s been quite a few things going on.  Quite honestly though, when I’ve not been too tired or too busy, I’ve been feeling too ill or else I’ve been just too damned lazy.  I’ll take a quick stab at providing at least some highlights (or lowlights as the case may be).

We met some very nice families at the Myositis Association event a few weekends ago in Universal City, Juvenile Myositis: A Conference for Children and Families.  It was great for the Princess to meet other kids who are dealing with some of the same things she is, and for us to meet other parents and share our experiences too.  I also found out about a new organization, The Cure JM Foundation and I hope to get more involved with them somehow.  The rarity of Juvenile Dermatomyositis makes it difficult to get funding for research, and Cure JM is committed to finding ways for the much-needed research to get done, and to spread information to the public.  Our kids deserve at least that much for all the hell they go through, living with an incurable autoimmune disorder.

As for my own physical health, I’m still feeling really shitty (literally and figuratively, hah!)… exhausted, with a bellyache that ranges from simply rather uncomfortable to “Screw this, if I don’t eat today, maybe it’ll stop hurting so much!” I’m waiting to hear back from my GI doc as to when they’ll start the Remicade treatments for Crohn’s Disease flare-ups.  If we can get this flare-up under control and get me back into remission, I won’t have to worry about another bowel resection for a long time.  It was 6 years between my first and second surgeries, so at least this time it’s been longer, and there’s far less narrowing than there was before.  All this “good news,” and I haven’t been on ANY meds for almost 4 years now, which really IS a bright spot!  I need all of those that I can find right now.

Is it wrong that sometimes I feel like just copying and pasting parts of the Key Findings of the Study at Voices of Crohn’s in an email to all of the people in my life so they might understand a little better how difficult it sometimes is for me just to do something simple?  Feeling lousy SUCKS, and feeling guilty for feeling lousy just makes things worse.  But feel guilty I do, because I just can’t do as much as I expect of myself - and I’m letting people down who count on me.  I’m sure it’s as difficult for others to hear, as it is for me to say, “I can’t (fill in the blank) because I’ve got the raging trots and my gut’s killing me,” for the 20th time in a month!  So unless I’m hurting so bad I just can’t fulfill an obligation, I suffer through it as best I can.  Admittedly, it’s getting more and more difficult these days… so I want to hurry up and get the damned treatments started and feel better!!! 

Time for the shits I’ve gotta TAKE to stop interfering with the shit I’ve gotta DO, goddammit!