I Suck at Healing


Aaand a month after my leg was expected to have healed, it’s still only partially healed.  (I should have had these X-rays a month ago, but I had to reschedule because of stuff with my kid.)  The bottom part has fused with the cadaver bone, but the top part hasn’t fused at all.  My doctor was stunned.  We’re guessing it’s probably due to the Ehlers-Danlos, even though that tends to affect soft tissues more than bone.  He said it’s possible I may never heal, and we’ll have to do a bone graft between my hip bone and the cadaver bone.  Right now the plan is to give it another two months (while doing these bizarre electromagnetic therapies) and then schedule a bone graft if the x-rays don’t look any better.

On top of that, my knee keeps slipping out of the joint, perhaps half a dozen times per day.  It all started after my kid accidentally kicked be under the table while my legs were crossed, although my doctor (same doc — orthopaedic oncologist) doesn’t think it’s really related.  He says it’s likely due to the EDS as well, heightened by the fact that the joint is so damned atrophied.  I reminded him that I have Type 1 EDS as opposed to Type 3 (in which joint subluxations are common), but he says he’s “not overly concerned” because the x-rays look good and it’s happening below the area he’d operated on.  Well, I’m concerned.  It hurts like a motherfuck every time it happens.



I’m here; I’m alive.  Been back at my parents’ house for the past ten days or so, and I haven’t really bothered charging my cell.  Whatever time I’m not spending with Ev is largely occupied by BBC America: Orphan Black, Doctor Who, and of course Star Trek TNG.  (The upside of being here is that there is cable.)

Doing home PT and looking forward to trying crutches next week.  Had the staples taken out on Wednesday (all 55 of them), and the surgeon says everything looks great.

As for my memory of the second hospitalization, I’d say it’s spotty, but mostly intact. I remember becoming aware of the fact that I missed out on an entire 24-hour period (I think it was a Thursday) and at one point waking up not knowing who I was or why I was in the hospital (which was scary) Dilaudid is some nasty shit.  At least I wasn’t acting like a total madwoman the second time around.  (In other words, I was nice to people.)

About ten more weeks until I can put weight on my new leg!  June cannot arrive soon enough.

Blood Transfusion


Back in Hospital; 2nd surgery went fine, only now I’m not supposed to put any weight on my right foot for a full 90 days.  (!!!)

The post-op pain is indeed terrible, and I can’t say it’s being managed very well, which puts  a lot of limitations on what I can do in physical therapy.  When you have one doc in charge of palliative care and another in charge of recovery, you’re bound to find a place in which the minds simply do not meet.  That place is here, in room ***.

Supposed to be getting a blood transfusion today, but what I really don’t understand is WHY.  Two days ago, they said I was anemic.  Now that’s improved, but the doctor insists my blood pressure — which has naturally fallen into the hypotension range (under 90/60) my entire life — is too low and that this will help.

I signed the permission forms prior to even having the surgery, but I find the thought a stranger’s blood circulating through my veins a disturbing one . Even moreso than the cadavar bones they have in my leg.

Retrograde Amnesia



It’s been reported as a rare side effect of Delaudid by around 2.5% of users.  The higher the dosage, the more complete the amnesia.

The more I hear about the way I was during those three weeks, the more alarmed I become.  It’s like my body was inhabited by a completely different person.  To anyone who had contact with me during this period: please accept my apologies for anything awful I may have said and realize that I was COMPLETELY out of my mind.