One Day At a Time

Once again, sorry for being absent so much lately.  It has been a difficult week, and I have had no time or energy for blogging (so, also sorry I haven't been visiting blogs lately!).  So a quick update...

Craig recuperating with his new little friend, a pet hamster

My younger son had knee surgery on Monday.  It was arthroscopic, but the surgeon did a fairly extensive repair, so Craig's leg is in an immobilizer and he is on crutches for at least two weeks.  I expected him to bounce back pretty quickly, but the brief surgery really took a lot out of him.  He is still in quite a bit of pain and still needing pain meds, so he has also been very groggy.  Mostly, he has just been exhausted all the time.  His CFS is fairly mild and normally well-controlled with Florinef - he even plays soccer - but stuff like this knocks him out.  Just being on crutches for a couple of weeks last spring really wore him out - he'd go to school one day, then crash for the next two days.  So, although we are hoping he is able to go to school on Monday (he really hates missing school), we know this could be a rough ride for him for several weeks.

Our newest family member

I felt good on Monday - even took a short walk around the parking lot while Craig was in surgery - but crashed severely for the next two days.  It might have been the stress (though the surgery was quick and went well) and the running around or perhaps a viral trigger, but I was pretty useless for much of this week.  I am doing better now, but all of my energy has been focused on taking care of Craig - helping him get around, keeping track of his meds, bringing him food (14-year old boys eat constantly!), and changing his ice packs.  He and I have had a very low-key week here - lots of naps and TV.  We did get out of the house today because he's getting a little stir-crazy.  We went out to breakfast, and then I surprised him with a stop at the pet store for a hamster - a little buddy to keep him company while he recuperates!

I did (finally) write my testimony for next week's CFSAC meeting.  I don't know yet if I got a speaking slot, but at least my written testimony will be part of the record.  This time, I focused on the need for urgent education of medical and educational personnel and illustrated that with some horror stories from our online parents' group.  I am sure each one of you has your own horror stories, too; I am hoping this will have an impact on the committee members.  I'll post my testimony separately.

OK, nap time after I finish the lunch dishes. 

NOTE:  If you or a loved one with ME/CFS needs surgery, be sure to share these guidelines with your surgeon and anesthesiologist beforehand.  The staff at the orthopedic center Craig went to was great and very understanding about the issues with OI.