Monday, April 17, 2017

A Long Hard Year

It has been a crazy year both on a health front and personal front.  At the beginning of 2016, I started with a new CFS/ME doc which triggered a cascade of new doc apts.  However, these were all in Boston or south of Boston in Jamaica Plain which all meant pretty bad crashes both from the car trips and the lengthy appointments.  I had a running tally of all the apts and hospital visits and it was quite ridiculous.  Undoubtedly in random order: CFS/ME doc at MGH, the head of neurology at MGH (this was a Dr House style visit with him and his staff), sleep study, multiple sleep doc visits, pulmonary doc and cardiologist.  This was on top of my regular doc, chiro and shrink visits.  I ended up in the ER several times due to a kidney infection and almost dying from the morphine they gave me in the ER and a recurrent UTI that they were scared would end up in another kidney infection.  Then of course when I managed to get through all of that I went in twice for procedures that I had been putting off due to all the other doc visits.  So I went under anesthesia for the first time since having CFS/ME.  The doctors and anesthetists were great.  They read the literature I brought and dosed me properly and I had very little side effects from the surgeries.  I think I crashed more from the stress of it than the actual procedure.  Lets just say the near death experience didn't help allay my fears about going under anesthesia for the first time since having severe neuro symptoms from my illness.  Anyway, this has all wound down for now.  I came out the other end of all of this with a diagnosis of severe sleep apnea which resulted in a CPAP machine and a diagnosis of an enlarged uterus which the doc wants to take out.  I'm still on the fence about that one.

On a personal front we were house shopping and fixing up our current house while all this medical crap was going on.  Last spring we decided that the kitchen had to be gutted completely and a new kitchen put in for us to sell our house at the price it should go for in this market.  So hubs proceeds to demolish stuff.  Dust everywhere and then the bad thing happened.  He opened the wall up when I was sitting on the couch next to the kitchen.  Black mold filled an entire bay.  Turns out the roof had been leaking probably for one to two years but the leak was inside the wall.  It was damp inside and covered in mold.  I immediately started coughing hard.  A year later and I still have a bad cough.  The pulmonologist who isn't mold savvy tried me on three different inhalers before we found one that didn't send my neuro symptoms into a tailspin.  It didn't help.  All I could do was eat cough drops all day.  And of course my CFS/ME got WAY worse.  I also gained weight due to both increased inactivity and eating take out almost everyday.  I was off my normal semi-healthy diet.  I got worse.  Instead of the 2-3 months we were quoted it was closer to six months for everything to be complete.  Everything trigger coughing fits: dust, walking, breathing.  Hubs stopped the cleaning lady from coming over during construction so the place got outrageously filthy.  The dust was staggering.  The house was open concept so even with the plastic sheets up (which the cats ripped doors into so they could access the kitchen) the dust, noise, and fumes were a daily problem.  Then there were the times I had to chase the cats down in the backyard when the construction guys accidentally let them out. I got worse.  On the weekends we were going to open houses which meant I was often climbing stairs to see the other floors if we were going to bid on the house.  This also meant more car trips.  I got worse.  We kept being outbid so we had to keep shopping.  It took us three years of shopping but we finally closed on a new house in November.  Now the packing started.

But the mold contamination was a problem and hubs wanted to ignore the whole contamination thing.  I did manage to talk him out of bringing the upholstered furniture to the new place.  We threw tons of stuff away but this was a large house with 16 years of stuff accumulated and I couldn't help.  Ideally everything should be washed and encased in plastic before moving.  HA!  Like that was going to happen.  The stuff that would take forever to decontaminate should go into the basement while the easily cleaned stuff go into the living space.  Again HA!  Hubs really doesn't take this seriously.  I'm being paranoid.  Imagining it.  However, every time I went to the new house, even though it also had construction dust I didn't have the nasty coughing fits I would at the regular house.  Hubs put together a huge list of repairs that needed to happen before he would let us move to the new place due to dust and smells.  It was torture knowing that I had a pristine place to move into but I had to wait.  My mom came to visit and she helped me clean and pack the kitchen up.  I also managed some of my clothes.  I labeled the boxes "washed" and "needs washing" since our washer decided to kick the bucket and put a halt to all laundry proceedings.  I couldn't get out to the cleaners to get stuff washed so I gave up.  Just pack it and I'll deal with it at the other end.  Not ideal but there was nothing I could do.  I was tired.  Oh so very very tired.  I often had days with the shakes or days I could NOT get out of bed.  My muscles literally wouldn't work and I couldn't get up.

Good news is: I'm moved.  I'm coughing less.  I'm improving.  Still eating way too much take out and processed foods.  I've had to use instant meal stuff like premade meatballs or trays of mannicotti or boxed pulled pork.  Not ideal but a tad better than takeout.  The deck on the new house has full sun in the afternoon so I literally step out the backdoor and can sunbathe.  I don't need to be able to get up or down steps, walk over to a sunny patch, haul a chair around.  I just walk two steps out and sit down.  I'm also facing the woods so naked sunbathing is an option.  I've done it once so far.  Topless has been happening regularly though.  My old yard I could only go topless in certain spots where I was hidden from the neighbors and even then I had to be lying on the ground.  Much easier here.  My new furniture isn't bothering me from a chemical standpoint which is a minor miracle.  The new couch is wicked comfy and I ended up sleeping on it until the water bed made it here.  A stair lift was installed so I have complete access to the second floor and the master bed & bath.  I have  a walk in shower with a handheld head which makes showering so much easier than it used to be.  While the tub is difficult to climb into and out of with the help of hubs it isn't impossible.  I had my first bath the other week and OMG it is awesome!  It is a soaking tub with jets.  I didn't turn the jets on but to be in a large tub with lots of water was divine!  My old tub was tiny because the bathroom was tiny.  As I got bigger I no longer fit well in the old tub.  Now I've got tons of room!

Life is getting better.  I'm slowly improving.  I managed to cook an entire dinner today mostly by myself.  That is the first time in many many many months.  I'm slowly getting my diet back on track.  Slowly taking my supplements again.  I've noticed I can read for longer and read more complex material.  I seem to be able to write again.  Not very organized but still I'm writing again!  It has been a tough year.  I love my new house though.  I still have to go through the exercise of finding new docs near me.  I've lucked out and found one that treats mold illness that is the next town over.  Haven't gone yet since I have to do extensive tests prior to my first visit.  Hubs is still playing with the old house prepping it for sale.  My kid moved to NYC so transportation is a problem.  Plus I just want to settle down first.  I want a couple of weeks without apts or places to be.  I want to eat better food for a while.  I want to improve a bit more before starting another doc apt barrage.

So that is where I've been for the last year.  In and out of hospitals, doc apts, renovations, moving, etc etc.  Things are settling down and I'm enjoying things again.  I have so many plans.  I hope I continue to improve.  I would like to be able to cook again.  I also want to start sewing my own clothes.  There is shite available when you get over size 28.  It sucks.  I have plans.

1 comment:

  1. OMG! When you say a long hard year you are not over stating the fact. so sorry to hear about all your health issues. Glad you got the sleep apnea thing sorted as that can be life threatening if left undiagnosed. Good Luck with a better year ahead