Saturday, August 22, 2015

The Downward Spiral

I'm in a prolonged crash.  It has been a crappy year for me.  I had a bad sinus infection this past spring and I had to do several courses of antibiotics to get rid of it which messed up my stomach.  Then due to the insane weather here and my weird sleep schedule I haven't been able to sunbathe to catch up on my vit D.  To top it all off I've had several super heavy periods that needed prescription progesterone to stop.  Each of them sent my already low iron levels into the basement.  It has been hot and humid for weeks now which makes me so much worse.  Even in the AC I'm sitting directly in front of a fan.  The AC unit in my bedroom is so old it no longer dehumidifies the air so while it is cooler in there it is still soggy. Those are the physical hits I've been dealing with this year.

The emotional hits haven't helped either.  My CFS consulting doctor retired earlier than he told me he would.  I thought I was going to have one last visit with him this year but I called and they told me had already left the practice.  I shopped around and carefully chose a new treating CFS doctor and after herculean efforts on my part managed to get an intake appointment, extensive nutritional testing done and one follow up appointment.  At the second appointment he gave me tons of paperwork.  Reams of it, which I thought odd at the time.  A week later I got a letter that the practice is closing due to financial difficulties.  It has been a month since then and I still haven't received my medical records from them.  They won't answer the phone and won't call me back.

So I tried calling my second choice and they don't take insurance of any kind.  The intake process alone will be over $1000 out of pocket and I can't get a straight answer out of the office chick as to what their fee schedule is.  I think I'm going to try back at the Marino Center again but with a different doctor.

Then to add insult to injury I get a letter from Prudential that they are reviewing my disability case so I have to assemble two years worth of medical records, sort them all out, make copies and write extensive explanations of my illness and why I can't possibly go back to work.  GAH!!

I want to go on vacation.  I want a house on the beach so I can just walk out the back door and straight into the water.  I don't want to cook.  I want to sleep and be quiet for at least a week.  I don't want phones or internet or TV or paperwork or doctor appointments or endless minor arguments with hubs.  I want to be alone and quiet and well fed and sun drenched and water logged.  Even us sickos want a vacation.

Tuesday, August 11, 2015

Vagus Nerve

From personal experience, I believe that inflammation is key in generating a good deal of the symptoms of CFS/ME. I got considerably better when I had cortisone shots in my joints for an unrelated problem.  The symptoms quickly returned as the steroids wore off.  None of my docs would prescribe a regular course of steroids to help with CFS/ME since it would be an off label use.

It turns out that stimulating the vagus nerve reduces inflammation in the ENTIRE body without the nasty side effects of steroids.  Now I'm on a quest trying to find out how to stimulate my own vagus nerve.  While I would love to have the pacemaker type device implanted in my shoulder, it isn't available for use in CFS/ME yet.

Here is various information on the vagus nerve and vagus nerve stimulation.

BBC podcast (20mins long and explains the pacemaker style device)

The Gut Brain Axis (hint the vagus nerve is the info highway between the two)

Cort Johnson's article on The Search for Neuroinflammation in CFS/ME

Of course this would all go faster if someone would cough up a sizeable chunk of money for some research on actual CFS/ME patients.  If it could get approved I would be first in line to give it a try.

Sunday, June 14, 2015

House Shopping

Been gone a long time I know.  I just haven't felt like writing.  Of course being wicked sick for most of the spring season didn't help matters much and I've been juggling doctors' appointments.  But to be brutally honest I just haven't felt the urge to write.

On to today's topic: house hunting.  Hubs and I finally purchased our own house in 2000.  We knew very little about house ownership.  Although both of us grew up in single family homes, neither of us were involved much in maintenance.  In hub's case he was too young and his Mom moved into a condo after his dad passed.  In my case, my father didn't maintain the house at all.  I had to learn carpentry, painting, electrical and plumbing from books in order to fix faucets, light switches, etc.  I knew nothing of construction, heating systems, etc.

The house we bought was originally built as a small ranch with slab heat.  A hundred year old map of the area showed swampland and there is indeed still swampland in walking distance of the house.  Hence the high water table and the slab style house (wood structure on a single poured slab of concrete).  The structure was then added on to twice.  The first addition was by the original owner who put on a second floor.  The second by the second owner who added a massive livingroom, kitchen and loft to the back of the house.  The fact that there is no basement has lead to some funky plumbing which for various reasons have frozen and burst at different points during the life of the house.  Then one of our renovations drove a cement fastener through the return line of the heating system effectively killing the slab heating system.

During our various renovation projects we found evidence of mold inside the walls from the aforementioned leaks.  We would remove the damaged materials and then put up fresh insulation and drywall.   The leaks had been repaired at some point but the water damage inside the wall hadn't been addressed so mold grew.  After the slab heat quit working, I started noticing musty smells in various corners of the original building.  Then I learned that concrete isn't supposed to be in contact with the timber framing of the house.  I know for a fact that not only do the walls sit directly on the concrete slab but that the slab is not sealed and the carpet is just laid on top of the concrete with only the rug pad as a barrier.  So NOT cool.  The quilts that were stored under the bed smelled musty when we brought them out.  I can no longer store paper goods under the stairs since they smell musty when brought out.  I guess the slab heat used to burn off all the mold and mildew but now the cement is just wicking the damp from the ground inside the living areas right up through the rugs.  Sigh....

Last fall I started to follow a mold group on Facebook which scared me silly.  While I have had fibro since my mid 20s, the worst flare ups have been during construction projects on this house.  I haven't gone through and verified medical tests with construction dates but if I were a betting person I'm guessing that there is some correlation.  I do know that being shut in the house over the winter makes me worse.  Again not sure if it is vitD deficiency or mold exposure or both.  After scaring myself, I decided that I want a new house.

Hubs doesn't want to fix anything anymore either.  Once I got sick we  also didn't have the money for huge projects and he prefers to use the money we do have on cars and racing.  So we have a house that still needs a new kitchen and quite a bit of work to remediate the mold problem.  Easier to move.
Now we are house hunting or should I say I'm house hunting.  I hand hubs a list of houses that he rejects for various reasons and I go back on Trulia again.  He has finally started to look at houses but only the ones he likes that have huge garages attached.  We just missed a house that would have been perfect for me but only had a two car detached garage.  He waited too long to arrange a viewing and it is under agreement.  Poop.

Today I went to look at one and it is such a mixed bag.  It is perfect for him but pretty horrible for me.  The layout is super funky because it has had two large additions put on.  The driveway and garage are at basement level.  The front door is between floors as it is a split entry.  The main floor has a small kitchen, living/dining room, decent size bedroom and the only full bath.  Then there are nine steps up to the rooms above the garage which are a HUGE master bed with walkin closet and another large bedroom and a small useless sitting area.  The master has a small deck with a spiral staircase to the backyard.  The kitchen has a balcony but no stairs into the rear huge family room addition.  The actual access to the family room is down the front stairs and through the basement.  Access to the backyard is the same, down the front stairs and through either the basement and family room or through the workshop: i.e. grocery hauling and BBQing will reach a whole new level of pain in the ass.  I also won't be able to make it outside if I'm doing badly.

The upshot is hubs LOVES the garage and workshop and it is laid out perfectly for him.  For me all sorts of renovations have to happen to make it usable for me: at least one chair lift, a brand new bathroom (there is a tiny corner model shower stall that won't fit a shower seat in it), either a wheelchair ramp to the front door or a step removed to make a wheelchair friendly path from the garage to the front stairs and possibly another lift/staircase from the kitchen to the back family room.  The basement room also needs work as it is laid out terribly and I would love to have a clothing care room that would include the laundry, sewing area and ironing area.  Plus the downstairs bath only consist of a toilet and sink crammed in next to the HVAC unit.  Ideally a powder room should be installed next to the master bedroom since there is no bathroom on that level despite the colossal master bedroom.

I like the location.  I like the land.  You can still hear some road noise despite all the trees but there are tons of birds.  Apparently the traffic is pretty bad in the area so things will be worse not better in that regard.  Easy access to NH from there though.  The border is 10mins from the house.  I would need new health care providers since trekking down from there would be just too much for me and also all the people I see would be outside the paratransit coverage area.  Good thing there are two large medical hubs near there but they won't be as good as where I am now.  I'm really not looking forward to doctor shopping again.

It is such a mixed bag.  Some of the renovations are great but the layout is dumb and the kitchen is small.  If I make the kitchen bigger it is going to overwhelm the space it is in but I need more in order to cook properly.  Lots and lots needs fixing and I don't know if hubs is going to take care of that.  I guess I don't trust him in that regard since the renovation of this house didn't go the way I wanted and it was never finished.  My current kitchen is literally falling apart since they installed really cheap nasty cabinets when it was thrown together in the 80s.

I didn't smell any mold in the new place but the shower stall is horrible and I'm worried that when that gets pulled away from the wall they'll find problems back there.  There is also water damage in the workshop where the back deck is which means there will also be water damage in the family room that can't be seen due to the flooring.  I think the ground is probably pitched towards the house so the runoff from the roofs ends up seeping into the building.  In that case the entire deck has to come out in order for it to be repaired.  Probably a french drain needs to be run around the outside to get the water away from the house and then the deck needs to be rebuilt.

Nice place but lots of repairs and upgrades need to happen to make it even usable and bring it up to code.  Geesh....

And then there is all the furniture we would have to buy since we have to get rid of most of our old stuff due to mold.  The whole thing makes me sad and angry.

Friday, June 12, 2015

Oh Mr. Sun, Sun Mr. Golden Sun....

This just hit the press

It is a 20 year study showing that women that avoid the sun have a higher all mortality rate than those that sunbathe.  Science is starting to back up Stephanie Seneff's ideas.

Sunday, March 1, 2015

Game Changer?

Here is the link to the actual science paper on CFS/ME/SEID causing the immune system to go into hyperdrive during the first three years of illness.  Hopefully this will be the game changer for my illness.  We now have a potential biomarker if the illness is caught within the first three years.  Now to wait not so patiently for treatments.

Saturday, February 28, 2015


Normally the life and death of celebrities both entertainers and scientists don't bother me much.  However, the recent loss of Leonard Nimoy has affected me deeply.  I'm old enough to have watched the original Star Trek.  I watched for many many years often seeing episodes multiple times.  The show had a profound influence in shaping who I am now.  I came to understand the absurdity of racism, the value of sentient life and the wonders of science and space.  Spock was my favorite character and from what I can remember the first person that I ever admired.  He was smart, knew tons of science and had no emotions.  Having an extremely sexist father emotions weren't valued but rather seen as a weakness so I aspired to be like Spock.  I wanted to be devoid of emotion but smart as a whip and know lots about science.  He heavily influenced the core of my being while I was at an impressionable age.

Oddly I never knew much about Leonard Nimoy the person.  My husband had met him once about ten years ago when he sat in front of him with his friend William Shatner.  Hubs was mixing sound for a Klezmer band at the time.  That was the first time I found out about his Jewish roots.  Since his passing I seen some of his gorgeous photography and found out that he was a supporter of the fat activist movement.

Each time someone posts something about him I cry.  I am in mourning.  He was such a huge influence on the way I am.  I can never thank him enough.

Astronaut Terry Virts captured this photo from the International Space Station flying over Boston, where Leonard Nimoy was born.

"May the Lord bless and keep you and may the Lord cause his countenance to shine upon you. May the Lord be gracious unto you and grant you peace." The accompanying spoken blessing, "Live long and prosper."

Wednesday, February 25, 2015


CFS/ME/SEID just ate my thyroid.  It is no longer working very well and I started taking synthroid a few days ago.  Of course this has sent me into a mega relapse.  I have about a 2-3 hour window before crashing hard.  Last night I went to bed at 8pm and slept for 2.5 hours and went to bed at my regular 5am bedtime just as tired as if I hadn't slept.  I'm about to go to bed again and it is only 8:30pm but I can't keep my eyes open.  So here are a couple of articles on Hypothyroidism that I want to save for later when I can read and remember things again.