Addendum

I rambled so nonsensically yesterday that half of what I intended to ramble about didn’t get mentioned. I’ll likely do the same today because while I’m far calmer I’m still relentlessly neurotic about that thing I can’t talk about. Also, I am cryptic.

Anyway, the biggest thing I didn’t mention was this article on the Health and Wellness blog at The New York Times about EPI. I am so thrilled that this article has seen the light of day because it is really big exposure for EPI. I can’t stress enough how important it is to spread awareness of EPI because that lack itself is one of the largest hurdles to deal with. And even among those that are familiar with the condition, it’s still one that is mostly associated with German shepherds, however, it is not exclusive to the GSD or even just to dogs!

Yara and me lying in the grass togetherI sincerely hope you take the time to read the article, but even more I’d appreciate it if you would share the link with others and help increase awareness of EPI. And, if you’re in a particularly generous mood, there are a bunch of fine products you can purchase that will benefit EPI research and the campaign to spread awareness, including, but not limited to the 2013 calendars which features this lovely photo by Red Cottage Photography. (Thanks again, Mike!)

Speaking of guide dogs, I also neglected to mention my sort-of-kind-of resolution for next year to really get guide-dogs.org off the ground. I know I’ve been saying that for, well, awhile, but in my defense I need to eat and so unfortunately things that actually help with that need took priority. Also, there was that whole pain issue. But I still have everyone’s contact information who voiced any interest in helping and I fully intend to pester those people relentlessly. Along with anyone else who wants to help out!

Oh, and I also totally forgot about the pain stuff. Well, honestly, there’s not too much to report. My new doctor remains awesome and she is in total agreement with me about not prescribing drugs with crazy side-effects just on the off chance they might help. Unfortunately, she’s exhausted any ideas beyond that and so has referred me to a rheumatologist. My appointment isn’t until after the New Year, but frankly at this point waiting is the least of my issues. As far as I’m concerned it may well be fibromyalgia and everything we’re doing is pointless because there really isn’t anything that can be done. But I’m relieved that my new doctor is on board with me and isn’t taking that diagnosis as the ultimate answer. The stiffness in my fingers is what concerns her the most, which was something my previous doctor didn’t seem to think was much of an issue at all. Personally, I’m really fond of the ability to use my hands and those few weeks where I couldn’t even bend my fingers to hold a coffee cup were almost worse than the few weeks I was in so much pain I couldn’t move.

Comments

  1. Cyndy before you pain issues suddenly came on, were you by any chance treated with any kind of steroids? The sx you write about, are pretty much exactly how mine presented that the rheumy deduced were likely triggered by a course of steroids I was given for another problem as within less than 72hrs after the steroids I was in such pain and I couldn’t use my hands, turn a door knob, hold a drinking class as well as immense pain in my shoulders, neck, knees, etc. The positives to if that was your trigger, the sx are pretty well known to abate in under 10yrs, and for me things got significantly better within 5, I still have some issues but mostly they happen when the weather is expected to change drastically or I don’t walk/move enough and sit too much stationary in a day

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