I Suck at Healing

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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.

Recovery

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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

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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

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http://en.wikipedia.org/wiki/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.

Amnesia

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Been out for a full week now, recovering at my parents’ house.  I have almost total amnesia of the three weeks I spent in the hospital, which is very disturbing to me.  Not sure if it was the drugs or my brain just trying to protect me or both, but it’s like trying to recall the details of an old dream that I’d previously described to someone else.  A memory of a memory of a dream, so to speak.  What little I do know could more easily be converted into an itemized list than an actual visual memories.

Everything seems different now.  Everything is strange.  Foods I previously liked do not taste the same; I look in the mirror an see a stranger’s angular face.  Even the scent of my own body is alien to me; it seems sterile and foreign, like the environment in which I was being kept.  Not sure if this is a side effect of the anesthesia or the delaudid or what.

Much thanks to everyone who’s stuck by me and visited, called, sent care packages, etc.  I’m very lucky to have such wonderful friends/family.  I’m greatly looking forward to the 18th, when the reconstruction of my leg — with metal and cadaver bone, my mom’s been telling me o_O — can finally be completed.

Day 22: Discharge

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I was finally discharged today after three weeks in three different hospitals and one nursing home.  I fell on February 15th, broke my femur completely IN HALF, and as a bonus was diagnosed with BONE CANCER.  I go back in for another surgery on the 18th.

We live in a second-floor apartment, and my wheelchair is no match for the 19 steps it takes to get up there, so for the time being, my son and I will be staying with my parents. o_O

Here’s a side-view of my right leg:

They sliced me open, scooped out a tumor the approximate size and shape of a facehugger, cut out the surrounding cartilage, bone, and muscle before stapling me back up.

The red dot you see near my Self-Made Man tattoo is from the screw they put in to keep my leg from falling completely apart, and the red dot to the right of the staples was used for post-op drainage — blood, lymphatic fluids, etc.

A set of x-rays taken of my lower body showed “significant deterioration” (their words — not mine) in both hips, so I have a feeling the bone scan will turn up even more fun stuff. 😦

Day 12

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My Grandmother has been hospitalized with heart failure, I’m in a nursing home, and my parents are basically raising my child.

It’s been twelve days since my hair has been washed, twelve days since I’ve last eaten, and I really, REALLY have to pee.

Now I find out that the nursing home doesn’t actually have a pharmacy at its disposal; it takes time to order and receive prescriptions.

And the nurse’s assistant spilled the contents of the bedpan all over my skirt AND the bed. She put a pad over the bed and said they’d change the sheets tomorrow.  The skirt she threw in with my clean clothes.

And these motherfuckers are supposed to reteach me how to walk?

To top it all off, I have a roommate. More on that later, I’m sure.