29 11 2008

The title of this blog is a pun.  This is why: Lately, I’ve formed an incredibly horrible habit.  For the past 2 1/2 months I keep falling asleep in one of our chairs.  To make matters more bizarre I also have managed to get on a total night schedule where I work and live all evening/night until about 4pm-9am and then I sleep from 9am-4pm.  It’s such a messed up schedule and the only reason I go on this schedule is because I hate sleeping without Jax in our bed.  I am certain that it’s horrible for my RA since the full blood circulation gets cut off from sitting.  But for some reason I continue to do it. My legs are so swollen.  I can’t stand up or move just this minute.

I don’t like living alone.  It’s so quiet without Jax here.  I am getting through it, but still very down about why he left me.  It definitely seems like he’s going through a midlife crisis.  All of the tell-tale signs are there.  1) Desire for a motorcycle.  2) Only comfortable when hanging with the guys.  3) impatient for no reason.  4) Makes plans with me a lot but only keeps them 1/4 of the time.   I totally understand that I have to really move on.  I’ve started the process, but now I just need to finish it for now for good.  That’s so hard for me to do because Jax always helped me to take care of me. But let me please say that before Jax i was the most independent woman ever.  I would have boyfriends leave me because they felt I was too independent.  But–that was before I got a failing autoimmune system.  That was before my body decided it wanted to try to kill me.

I miss my family this holiday season.  I miss all of the love and hugs and instant large group of pals.  I miss the noise and the quick naps on the couch.  I miss the yummy amounts of food.  I miss the words of encouragement and sweet laughs.  I miss a support system and everyone I truly love being so far away.  I am rethinking where I live again and again. I’m afraid to leave LA for one reason only – my health. If I move I would have to switch doctors and who knows if a smaller city would have the caliber of doctors i have here in LA.

I read your comments and sometimes it totally freaks me out how many people get what i feel are unnecessary surgeries.  I feel that the doctors are treating their patients in smaller towns with technology & knowledge from 20 years ago when they graduated college.  I shudder to think what would happen to me without the progressive doctors at Cedars Sinai or St. Johns or UCLA.  I have so many medical options here for good care and I feel incredibly lucky and grateful.

READER ADVICE:  The main advice I have for readers this week is this – please get a second opinion even if you feel too horrible to get out and about.  I fear they are just picking straws to determine your possible Dx as opposed to actually knowing what is wrong.  It’s truly awful.  So this is why I feel i can’t just pick up and move.  So I don’t have another option other than having to make this place work for me. I would most likely still be deathly sick right now OR dead because of incorrect Dx.  First, with RA I have Sero-RA which means it doesn’t show up in my blood work even though the starting bone damage was severe.  My mom had sub-par care and as a result her fingers are all gnarled up.  She only just got Dx with RA now at 65 after all the damage has made her deformed.

And for my chronic pancreatitis Dx… I would’ve already been dead because the docs are usually only looking for your pancreatic enzymes being out of whack.  But that isn’t the only marker that your pancreas is diseased.  So I worry about some of the readers here.  So my best advice (this is only my opinion) is to go to the most progressive hospital you know about.  Also, just because 1 doctor wants you to have surgery – it doesn’t mean you should.   That’s really when you should get a 2nd opinion.  DOCTORS ARE NOT GODS!  Please remember that in some cases they are making their best guess as to what to do.  It doesn’t mean they are always right. But I want to be sure that you know that this is only my opinion and should not sway you from seeking proper medical advice.

More very soon,

Love Sasha xoxoxo




One response

29 11 2008

Wish you well! If you miss all the love, hugs and instant groups of pals try reconnect with your family and your pals. Hope you are not offended with my unsolicited words.

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