Madwoman's Attic: In The Attic

back to (almost) square one

Mom came home from the hospital on Saturday evening.  She checked herself out because the hospital staff refused to treat her pain or listen to what has worked in the past.  Since they've never heard of her condition, it obviously doesn't exist.  Something I find amazing considering the wealth of information found at wikipedia.

Anyway, she is home now and exhibiting signs that the Transverse Myelitis episode (of which this is her fourth, indicating the presence of severe MS) possible caused a small stroke.  As a result, she cannot use the left side of what is remaining of her functioning limbs.  The pain in that side is quite severe, and if it doesn't abate by the latter half of the week, to the hospital in Fresno we go.

But, she's eating like a horse, so I guess that's somethin'. 

In the meantime, I am working from home this week (during the day) and am having what recruits I can find stay with her in the evenings while I am in rehearsal for Last Train to Nibroc

The title of this refers to the fact that once again, as was the case 5 years ago this spring, mom is entirely bed-bound, unable to do very much for herself and entirely dependent.  If the situation cannot improve, we must face the fact that it may be time to put her into convalescence.  Something I do not relish.  In the least. 

Mom Update: Suffering

So, the biggest question issuing forth from my mom's lips in the last two days has been "Why does God want me to suffer so?"

And when she says "suffer", she means SUFFER.  Not "Why does God make me put up with these little annoyances?"  "Why does God inflict this obstacle upon me?"  But suffer-- in the physical, mental, emotional, and spiritual sense.  But primarily the physical

Last night at about 10 p.m., some symptoms came forward that were very similar to what occurred when her acute transverse myelitis presented itself the first three time-- which is what made her a paraplegic, raising her paraplegia higher in her spinal chord each time. 

This time, though, since the damage to her spinal chord is slowly getting higher and higher, the pain and dysfunction occured in her breathing and in her heart operation.  She literally thought she was going to die.  And the thought crossed my mind, too. 

And, the fact that the pain from transverse myelitis is almost entirely neurological, there is only so much a traditional opiate treatment can do.  Opiates help manage her pain on a day to day basis, in conjunction with neurological meds originally intended for epilepsy and anxiety. 

So, when the extreme pain of the spinal chord wigging out on her body comes along, most E.R. staff (who have never seen this before) don't understand why 8 mg of morphine isn't knocking her on her ass.  Well, that's because only an antianxiety med (to help the nerve impulses slow down) and a corticosteroid (to slow the inflammation in the spine) will do ANYTHING.

I know this.  But will they listen to me?  No.  I'm just the one who has watched the progression of this disease for six years.  Observed closely the person who has lived with it everyday. 

Anyway, she finally got some relief and what happens?  This afternoon the same sort of neuropathy has presented in her left arm and she is, again, in extreme pain.  Would the floor nurses in the hospital listen to what she had to say about her condition?  No.  They accused her of being drug seeking.  Well, they would be seeking drugs, too, if they knew of the pain she suffers daily.

So now she is home, slightly more comfortable simply for the fact that we can use her regular antianxiety meds to her advantage to make the pain at least tolerable.  And Monday, we will go to a larger hospital where her regular physician will be on duty. 

But right now, she experiences nothing but suffering. . . in the "comfort" of her own bed .

It's 10:10 p.m. and Mom is still up and baking. 

"That sounds like a good thing, Heather," one might say.  But, no, you see *i'm* ready to go to bed.  I have a good book waiting for me in bed.  But, yes, she's feeling well enough to bake which is an improvement. 

She's reaped a great benefit from a change in anti-depressants and pain medication.  The nerve pain is "tolerable" now and she's sleeping better and is generally more able to cope with the day-to-days.  This has helped us both be able to create a plan for our fiscal needs. 

Don't get me wrong, our perpetual state of "genteel poverty" is confining and still often frustrating.  But it's not quite as hopeless as it seemed a few weeks ago.  It's something we have to stay on top of everyday and we're still very much living hand-to-mouth.  But I've got a line on a few jobs that might work out for our situation.  We've got a schedule and more daily structure which also helps both of our states of mind.  So, with Mom generally hanging in there a little better, I might actually be able to achieve some steady employment.

In the meantime, my friends (both face-to-face and in-tor-net friends) have been exceptionally loving and supportive.  Just being able to have a laugh with Mom on a regular basis has made our journey together once again bearable.  Perhaps even worthwhile. 

Mom is rebounding a bit.  Today she got up and made some spaghetti for dinner, so things are more tolerable.  She's still pretty sick, though, and needs a lot of care and attention. 

Additionally, my cat Trixie got hit by a car and her tail is broken in two places.  The vet said to watch for constipation or bladder problems, which she has as of tonight.  So I think we're going to have to amputate her tail.  Poor Trix.  She needs a lot of care and attention, too. 

I, for one, am very excited that this next weekend is wide open on my calendar.  Sure, I have a staged reading to do next week, but that's three nights of rehearsal and one performance.  A blip on the radar screen compared to the Macbeth commitment. 

That means time for me to clean my sewing room and organize my office area and iron my clothes and pretend like I have some order in my life.  It's also time to devote to some heavy duty text work on Murder in the Cathedral and Measure for Measure.  And also time to read at least three mystery novels. 

It'll also be time to reflect on how it is that I miraculously became the least insane person in my family. 

Yes.  It will be a blessed weekend.  I'm truly looking forward to it. 

Vicodin, Methadone, Dilaudid, and Ambien

It's pretty back when THAT combination of pharmaceuticals doesn't knock out the pain. 

My mother shouldn't be feeling anything right now, but alas. . . .  her pain is so bad -- compounded by the pain of a pulled tooth in a dry socket-- that no matter what she takes she can still feel the pain. Occasionally it is unbearable.  Some of the time it is quite bearable.  But it is never subsided enough for her to sleep. 

She's going to try a new neuropathy drug that they give to MS patients, but the pharmacy had to order it and it won't be here until Monday. 

Oh, the joy. 

infections suck

Mom discovered last week that she has two abscesses in her mouth, thanks to a cracked and rotting molar.  She's on so much pain med, that she barely even noticed any pain until the abscesses were so bad that the opiates couldn't touch the pain.  And it was BAD!

She's been back and forth from the dentist and yesterday we saw an oral surgeon (who didn't say much more than the general dentist) for a consult.  He did try to "drain" (read:  withdraw with a needle) some of the infection in the abscess to culture it. 

Today, mom's blood pressure is pretty darned low and she's running another small fever.  I don't know if it has anything to do with the infection in her mouth, but when you're immunosuppressed any infection in the body is dangerous. 

She's been lying with her legs elevated and drinking saltwater to get her bloodpressure up.  So we're going to the regular doctor today.  She hasn't been drinking as much liquid lately because of the dentistry factor, so I'm just hoping that this little dip is a dehydration issue more than anything else. 

Ready for this?

The army of specialists at UCSF who have finally taken a close look at my mother's FULL health issues and history ordered a battery of test, scratched their heads, put their heads together and came up with a working diagnosis of. . . .

. . . are you ready for it. . . .

transverse myelitis FROM Multiple Sclerosis. 

No, not just the one like we thought. .  but BOTH.   A rare form of MS from a viral attack on the immune system, probably. 

She's being released from the hospital tomorrow and will have a referral for a work up at the MS Clinic in a month or two. 

Woo hoo. 

Well, now at least I have something people have at least heard of when they ask me what's wrong with my mother and why she needs a full time care giver. 

UCSF Update

The doctor at UCSF has decided that my mom's sceptic infection simply needs dressing changes.  Yes, that's right.  No debreeding surgery.  No antibiotics.  Dressing changes. 

For an immunosuppressed woman with a bevy of other health problems. 

Dressing changes. 

Her nurse did say that she's very stable now and will be transfered out of ICU this evening. 

What this probably means is that they aren't going to do much for her and are going to release her in a few days.

What this also means is that we are documenting everything and calling our lawyer. 

UCSF

Mom has been transfered back to UCSF Medical Center.  She had to have a blood transfusion because she apparently lost a lot of blood during the surgery (something they failed to mention to her) and her spinal sutures are severely infected.  She's fully sceptic now. 

On the one hand, we understand her being sent back up there because they were the ones to do shoddy work and they should be the ones to fix it.  On the other hand, we don't trust them.  God's Little Acre:  East of the Rock and West of the Hard Place. 

I'm leaving tomorrow to be with her for a few days.  Hopefully, she'll be released in that amount of time.  I'm leaving a ton of things undone here at home to get there, which bothers me.  But I'm sure I'll get over that once I'm outta here. 

Sceptic

So, mom is officially sceptic (filled with infection) from the surgery at UCSF.  She's be admitted to the hospital in Tulare and her doctor is trying to decide whether to transfer her back to San Francisco or not.  Her surgery site is "draining" (read:  oozing) and even her feet are developing sores with pus in them. 

Ironically, the only place she doesn't have an infection is in her urinary tract-- where she usually gets them. 

Her blood pressure drops at a moments notice and she get delerious at times.  This is probably the worst case of scepsis she's had.  While she typically has bumps in the road after a procedure because of her suppressed immune system, this one is particularly bad. 

I am distracted for her, but not gravely worried as of yet.  She's allergic to a lot of antibiotics now so the coming days on the few antibiotics left to her will tilt things one way or the other.