Sept 24: general health and life updates

Rather confused:  I put a post up last week and it seems to have disappeared into the air.  There are changes on the blog site itself which I probably need to pay more attention to.....

So, lots going on.  Still on the prednisone, trying to get down to 10 mg a day.  Have taken 4 doses of methotrexate, haven't seen any change but it takes 2-4 months to really kick in.  Will not be taking this week because I'm in the middle-late phase of one of my 'typical' asthmatic bronchitis attacks.  Began suddenly Saturday, I started taking Cipro later that night but it continued to progress.  Temps up to 102, nasty chunky stuff being coughed up, and my whole ribcage and back are very painful with all the coughing, despite all sorts of medications.  Didn't go to work Monday, won't be able to go in tomorrow.  Had to cancel my rheumatology and cardiology appointments for today as was just too sick to leave the house.   Haven't been able to use the CPAP, up multiple times a night coughing and hacking stuff up.

On Sept 3 I officially gave notice to my bosses of my intent to leave and pursue disability.  It went as well as it possibly could.  G, and the others, were rather stunned, as they had no idea how lousy I felt.  In preparation I put together a group of pictures showing what I'd given up with the house and car, and all the boxes and mess still left untouched since moving here six years ago as my testament of my fatigue.  I pointed out that wen I was in heart failure with horrifically bad pulmonary pressures I had kept pushing through, so they should take that into account now that there is a health issue which is less quantifiable.  Inherent to the employer-employee relationship is that they don't pay me to come in and whine, they pay me to come in and work.  All were supportive and have promised to work within legal boundaries to assist as much as possible.

Even in the early stages of this I'm already amazed at how complicated this is and is going to become.  Trying to coordinate insurance, COBRA, apply for Social Security Disability (can't be done until I'm officially on short-term disability), deal with the company who does short & long term disability, how to handle retirement accounts without taking away all my future security, when making withdrawals makes the most fiscal sense.....  At this point just trying to get as much information as possible.

Also coping with the knowledge of how much this is going to affect me financially.  It's not going to be easy.  While I decreased my mortgage substantially last year with all the extra hours there is still a mortgage, taxes, upkeep, utilities, lawn care, etc that have to be paid for, in addition to now having to pay for my health insurance.  I'm very glad for having the rental income, but it's still going to be incredibly difficult.  Having assets will probably keep me from getting aid from some sources. 

Despite knowing that this is what has to be done to protect my physical health it does come with some very difficult further adjustments.  This is, in many ways, giving up being a PA: something that I fought very hard for.  I may never work professionally as a PA again.  While I'm hoping that maybe with a couple years of rest and recuperation, experimenting with different medical diets (ie anti-inflammatory) and exercising maybe I'll be able to work again, but with two major chronic health issues and all their ramifications it is pretty doubtful. 

So exhausted now that I'm retiring to the couch--again.  Thanks for checking in,   Laurie

September 11: the 12th anniversary

On Cape Cod, will be driving close to Boston, where of course one of the hijacked planes came from.  There are a lot of flags out, more so than the last few days.  Any on poles are flying at half staff, as they should. 

As I've noted before, what astounds is how 'normal' this day has become.  Maybe that's the lesson.  No matter how huge and horrible something is, whether it is personal or national tragedy, life goes on.  It did after WWI & II, and it has after 9/11.  It doesn't mean that things aren't permanently altered--we are now all much more aware of terrorism and our vulnerability.  But life goes on. 

I pray for the difficulty of those who lost loved ones who must re-live this day in the national spotlight.  I pray for courage for those who must go on after being so affected, obviously top on my list the co-workers of the emergency service personnel lost.  I pray for our country, that we will never again have so great a tragedy occur on our soil. I pray that we will not go to war again, not risk losing so many of our brave soldiers for something that probably can't be stopped no matter what we do or don't do.  I pray for the leaders of our country, whose decision making affects us all. 

In Memoriam

To all those lost at
WTC & The Pentagon

To the brave passengers and crew of
Flight 93

who were the first Americans to fight back against the terrorists

To those who knowingly made the ultimate sacrifice

FDNY, NYPD &  PAPD

and to those whose efforts then are leading to their deaths now

WE WILL NEVER FORGET

 

 

Please spend a few moments sending out your prayers or thoughts for peace.  You never know who is listening.

 

 

In peace,   Laurie

 

 

 

 



Sept 11: personal updates

Was not feeling well following the prior post.  Exhausted constantly.  This auto-immune thing is kicking my ass.  Sjogren's sounds like just an inconvenience, but combined with my other stuff it's really life-affecting.  I'm waking at least twice a night because my eyes and mouth are so dry between the Sjogren's and the air from the CPAP.  Frustrating. 

Started a new medication, very common for auto-immune disorders: methotrexate.  It's a mild form of chemo.  The rheumatologist did redeem herself and came up with this plan.  Still on the prednisone, had to go back up to 20 then 15 mg, today trying 10. Tomorrow will be the third dose of the methotrexate, it's taken once weekly as with many chemo treatments.  Takes a while to build up in the system.  More on this later.

Right now I'm on Cape Cod, having just spent several days with Diane, a friend from UUMAC.  Leaving as soon as I finish posting for New Hampshire to meet up with the cousins. Susan couldn't make it at the last minute, so it won't be as much fun, but still planning lots of quiet contemplative time, reading and writing.  The new medicine makes me even more sensitive to the sun than usual (which is already pretty sensitive), so will have to stay inside from 10-3 or so but then hope to get in some decent kayak trips.

More details  when I get back......  Now to do the yearly post.

Thanks for checking in,   Laurie