Wednesday, July 26, 2017

To Sleep Perchance To Dream

My apologies to the bard....

Sleep is very VERY important.  Even more so when you have CFS/ME.  We sleep badly.  We sleep badly for all sorts of reasons.  I sorted out my sleep meds a long time ago.  I take 25mg of trazadone (to stay asleep), magnesium taurate (to initiate sleep) and MSM (for pain) before bed. This past year I've been wrestling with my new CPAP machine and more recently the move to the new house where I had to throw out all my bedding and buy new.  Hence the continued search for the perfect pillow.

First CPAP
When I first got sick, I was on a CPAP machine for the first time.  My dental appliance wasn't cutting it for my snoring and fits of lack of breathing anymore.  I'm from a long line of champion snorers and apparently my tongue is too big for my mouth.  Between all of that and my weight voila! Sleep apnea!  Well I hated that thing with a passion.  Of course when my insurance got all out of whack due to switching from my company policy to Medicare I had to return the machine and I reverted back to my beloved dental appliance.  By that point I had lost weight due to my illness so it sufficed for many years.

Well, I've gained back the weight I lost and added on quite a lot of extra pounds.  No exercise makes me fat(ter).  It all finally caught up with me last year and I ended up at the Brigham and Women's sleep lab.  It was the only one where I could arrange for a sleep study during the day.  No point in sending me to the local hospital lab.  All they would end up doing is watching me watch TV all night.  So after a huge nightmare ordeal with the doc's incompetent office staff, I ended up seeing the nicest sleep doc I've had yet.  And I'm back on a CPAP machine.  The new ones are better.  They start at a low pressure and ramp up slowly until you keep breathing while asleep.  There are way more mask options than 7 years ago and after the first one was a spectacular failure I got fitted with one that goes over both my mouth and nose.  These don't bother me much because I've had to wear facemasks in the lab for work on and off for years.   So I've settled in and made peace with the machine.  I no longer wake up with headaches from oxygen deprivation or a spectacularly sore throat from snoring hard all night.  I have to do have to play the radio to drown out the air flow and air pump or my breathing won't settle into a natural rhythm.  This is okay most nights but if I'm flaring badly and can't stand noise sometimes I skip a night with it.  I sleep so terrible that I actually look forward to using the machine the next night.

I just had a vid chat with my doc today and I'm doing great on the machine.  He lowered the pressure for me so it is much more comfortable to wear.  I'm using it almost every single night for an average of 4.5hrs per night with my longest stint at 7hrs!  I only stop breathing about once per night which is better than a normal person without true apnea!  Woohoo!

I have done a couple of things to make the mask more comfy.  I now use a fabric liner from Remzz's.  I've also removed the rubber/silicon standoff that rests on my forehead and replaced it with a folded up tissue.  I found the mask doesn't adjust down close enough to my face when the rubber standoff is present.

I did come down with shingles around my eye for about a month and had to switch to nasal pillows after sleeping for a week without the CPAP at all.  I couldn't tolerate anything touching my face as it felt like a severe sunburn.  I couldn't wear the pillows for more than two hours without the inside of my nose hurting severely.  Nothing I did would stop this pain from happening so I just tolerated it until I got to switch back to my face mask.

Anyway, I'm happily back to using my regular mask.

The Bed
Ah now this still hasn't been solved.  We moved.  I have a waterbed.  It leaked at one point and I'm highly allergic to mold.  I bought all new plastic bits including bladders, liner and cover.  I also bought a new foam pad and the cotton cover that makes it look like a normal bed.  Now this is a king size bed which means it is slightly longer than wide but you can't tell by looking at it.  After we moved, hubs set up the base, then put the foam box on the bed, put the liner in, then the bladders.  The bladders get filled with water, one for each side of the bed so we can adjust each side for our preference.  Then the foam topper goes on for thermal isolation and finally the cover gets zipped into place.  Well we get to the zipper part and the foam doesn't fit properly.  It is my strong belief that hubs had put the foam box on the base the wrong way round.  It was now too short by several inches and too wide by several inches.  But he wasn't to be defeated and forced the foam and the zipper to work.  So now the bed has high points at the head and foot of the bed. Problem #1

Oh I still have a slight case of MCS and can't tolerate odors.  Particularly chemical odors.  The bed now stinks.  You know that smell of a cheap new shower curtain.  Yeah, like that but from the bed I'm supposed to sleep in and I sleep face down.  STINK!  Oh so stinky!  So I end up in the guest room on the brand new bed I bought for my kid because even though that is a brand new gel topped mattress it doesn't stink.  And I had the forethought to purchase an adjustable base so I can put the head and feet exactly the way I want them.  Problem #2

We don't own any curtains.  The windows are a weird shape; very wide but short.  The old shades don't go with the new paint scheme and hubs doesn't want to wrestle with the old hanging system.  So both bedrooms have tons of light streaming into them during the day.  And because of the positioning of the house it only gets worse as the day goes on.  The guest room does still have the old slat blinds mounted in the window so I can reduce the amount of light in that room but it still isn't even close to being dark.  Problem #3

The second floor of the new house has almost no air circulation.  Even when I open the windows not much air flow happens.  When it is sunny out the bedroom turns into an oven easily topping 80F even with the AC on.  Turns out that the central AC system for the house is a single zone and underpowered for the size of the house.  So while it might be a comfy 75 downstairs the masterbed is 85.  I prefer sleeping in 65-70 range.  Yeah I kept waking up in a pool of sweat hugely uncomfortable and generally pissed off.  I would trudge down the hall to finish sleeping in the slightly cooler guest bedroom with a fan blasting at me.  Problem#4

Back to the Bed Again
Turns out the bladder is too full which means I end up with all sorts of body pain when trying to sleep on it.  Even now that it doesn't' stink anymore I get woken up with limb, joint or back pain.  I had to throw out all my old pillows.  I had it setup just right before the move.  The bed was really soft and my upper half was cushioned in pillows that didn't make me sweat.  Taking water out of the bladder while a pain in a butt is fairly easily fixable.  About a half hour's worth of work for hubs.

But the pillow problem oy vey!!  The amount of money I've spent on various pillows is in the hundreds of dollars at this point.  My son now has three different pillows to choose from that I've rejected for one reason or another.  I've bought organic wool, cotton, kapok and latex.  Turns out I'm mildly allergic to kapok.  Latex just plain old stinks and is very very hot.  Wool and cotton pack down which makes them too hard for me to sleep on top of like I was doing in my old house.  So I went to Walmart and bought some cheap ass pillows that didn't smell.  Well, they turn out to be insanely hot.  And the weird synthetic fabric covers on them catch on me when I try to move.  This wakes me up as I end up in a wrestling match with the stupid pillows and I'm all sweaty too boot.  They now reside inside my closet.  They will be the ones that end up inside the decorative shams when I get that far with the bedroom; i.e. they'll get tossed on the floor every night.

I finally bought a bamboo covered temperpedic foam core 7" wedge for my torso.  It is soft enough and very comfy to lie on top of but I'm back to the stink problem.  It is outgassing.  Each day it is less stinky but in the meantime I'm back to trying to sleep on my uncomfortable bed.

I also got a weird foam CPAP pillow that has scooped out corners so it doesn't jam into the mask.  I still end up with dents on my face in the morning but it is much more supportive and comfortable than trying to faceplant in a regular pillow with a hard plastic mask on your face.

In the End
I'm still wrestling with sleeping in the masterbed.  The bladder in the waterbed is still a tad too full so hubs is going to have to play with it some more.

I bought blackout curtains for the windows but the room feels weird and icky with them up.  Not sure how to fix that.  They were just cheapo curtains for a temporary fix.  I couldn't keep sleeping with the sun streaming in the room.

I found that if I had the central AC fan run continuously the upstairs cooled off better than if I let it cycle via the thermostat downstairs.  I bought a portable AC unit just for the materbed.  Hubs is rigging it for the window casing so it isn't up and running yet but should be in the next few days.  This is a temporary measure until we fix the central AC.  We have to put a second unit in the attic for cooling the second floor so it will have its own zone.  But that isn't going to happen for a few years yet.  We have more pressing things to fix/spend money on.   I also bought a fan just for the guest bed since that room is going to continue to be too hot.

The wedge pillow will work out once it finishes degassing and my CPAP pillow is fantastic.  I still don't have a body pillow that I like and keep ending up with the smaller wool pillow tucked up against me.

Now the other weird ass problem I can't fix easily has to do with the orientation of the bed itself.  Both of us have noticed this before in other places, hotels, our old house, etc.  We sleep better/worse depending which way the bed is facing.  It makes no sense to us but is a real phenomena.  Well it turns out I don't sleep well in the masterbed in its present orientation.  I sleep WAY better in the guest bed which is 90 degrees different from the masterbed.  I've found that when I wake up at the midpoint in my sleep cycle if I climb back in bed across the bed instead of the correct way I sleep much more deeply.  Because this is a water bed and because of the doors/windows/ AC vents it can't be moved easily.  We are basically stuck with this orientation for the foreseeable future.  So I guess I'm stuck sleeping across it rather than along it.  The problem this creates is wearing the CPAP mask.  I'm tethered to the machine and the way I like to lie in the bed will limit me to sleeping on my left side only when the mask is on.  I have yet to find out how feasible this is since I'm currently only sleeping sideways after I take the mask off.

I still have my various weight blankets but need a sheet.  I have some pajamas that still fit but a very limited assortment.  I vary what I wear and which blankets I use based on the room temp.  I need some more pjs of different weights.  I want to sew them up myself but the sewing room is currently a storage room and hasn't been unpacked never mind setup.  I guess I'm stuck buying from a catalog right now.

In Conclusion
Things are coming along.  I have pillows, curtains and my CPAP machine.  The AC is in the works and the bed needs less water.  The bed doesn't stink anymore.  I need to buy more pjs and a sheet or two.  Maybe I'll get a wool mattress cover and a wool body pillow but I need to save up for those as they are quite expensive.  I think I'll end up with lighter colored curtains eventually with a blackout shade underneath.  That way the room doesn't feel so gloomy.  I still have work to do but after living here for five months I had had enough and decided to start fixing things even if they were temporary fixes.  I need to be able to sleep well.  While I like the guestroom more, my son is home more often right now since he lost his apt in NYC (that is another long story) so I need to setup the masterbed properly.  I'm getting there.  It has taken lots of trial and error and quite a bit of money.  I'm not looking forward to my credit card bill next month but, hey, it is getting better.

Tuesday, July 25, 2017

Ten Perks From Being Housebound

I got the idea for this post from Toni Bernhard's piece in Psychology Today
Top Ten Reasons I Don't Mind Being Housebound

I changed the title a bit because I DO mind being housebound and would love it if I weren't.  Anyway, onto some light hearted fare....


  1. Only loosely bound to a schedule.  The only time I need to pay attention to a clock is for dinner prep or doctors appointments.  Otherwise I can completely ignore it.  I no longer need to wear a watch.
  2. I can sleep whenever I want and don't have to stress over insomnia or an irregular sleeping schedule.  When I first got sick I was constantly nodding off wherever I happened to be sitting so I started calling it free range sleeping.  Now that I've been sick for six years I've settled into a more consistent sleeping pattern.  Since I'm on disability and can't work, I don't have to force myself to sleep on a regular schedule.  A few docs' have suggested I take sleep meds but I figure why?  I don't need to be up in the morning so why stress over it.   I go to bed when I'm tired no matter what time of day it happens to be and sleep for as long as I need to.
  3. Binge watching entire TV shows.  I think the longest binge was the original Stargate series.  Nine seasons at 22-24 48min episodes per season.  It took me over a month to get through it.  I am a bit bummed that the current practice is down to 13 episodes at 41mins a piece.  Now it only takes a couple of days to get through one season.  Sigh....
  4. I no longer have a boss to answer to.  No more uncomfortable performance reviews where they tell me I'm doing a great job but they can't give me a pay raise because _____.  No more office politics.  No more misogynistic coworkers. 
  5. No more commute to/from work.  OMG this one was getting horrendous by the time I got sick.  A 15 mile drive that used to take me about 20mins was up to 45mins on a good day and 3+ hours on a bad day.  
  6. I can go outside into my yard almost whenever I want (I do have the occasional day where this is out of the question).  Working in a government lab meant that around the winter solstice I literally never saw daylight.  I went to work in the dark, worked in a lab without windows and drove home in the dark.  Now I can open shades, open windows, or even walk onto my deck whenever I want.  It might be freezing outside but I can stare at the trees whenever I want and breath fresh air whenever I want.  During the warm weather I can sit outside for hours.
  7. I get to have cats around me ALL. THE. TIME.  Woohoo!
  8. I get to drink lattes almost everyday.  My son and I go out for coffee most days.  We get to chat a bit and have great coffee together.  We search out little coffee shops together.  This was a tradition that me and my mom started decades ago.  We used to go to Dunkin Donuts for a coffee and donut together once or twice a week.  I'm so glad that I get to do it with my son now.
  9. I can wear my pjs all day if I want to.  Or I can wear the same clothes for multiple days in a row.  And, I don't have to wear coordinated outfits.  I can wear sweats or yoga pants or leggings or tee shirts.  And I don't have to wear a bra!!!!
  10. Lots and lots of pillows!  This is the one perk that I share with Toni.  I have a big pile of pillows on the couch and another pile in my bed.  

Monday, July 24, 2017

General Update

My recovery from last year is going really slow.  However, I'm coughing way less.  We have a buyer for our old house but we haven't closed on it yet.  Hubs keeps going over there every weekend so my cough hasn't gone away completely yet.  The concept of his showering and changing clothes after being over there has never occurred to him.  I'm lucky if he changes his shirt and that only happens if I bug him.  Then he sleeps in our bed and contaminates the sheets and blankets.  So I'm still coughing.  Occasionally I have to use my asthma inhaler.  But things are way better than before.  A pack of cough drops can last me almost an entire week instead of one day.  I'm using my inhaler about once a week instead of daily.  I do have setbacks if I'm not careful when unpacking boxes.  My son gets it so he showers, changes clothes or handles crap from the old house that hasn't been decon'ed yet.  He can see the direct relation between his exposure and my coughing fits.  Hubs just gets annoyed that I'm coughing rather than helping out.  Sigh.....

I'm still pretty crashed.  I'm sofa bound.  I'm cooking very simple meals still.  Luckily it's summer so we can grill a lot so all I have to make are sides or salads.  On my good days I'm scrambling eggs and making coffee for breakfast in addition to the simple dinners.  I'm getting out a bit when my son is around (he's currently flying back and forth between here and CO for his work).  We go for coffee and late breakfast almost daily when he is here.  I get to the supermarket once a week and have just started to go to the farmers market roughly twice a month.   I'm not using enough fresh veg to go more than that.  It is a waste of spoons.  I'm still eating way too much take out but that has been improving.  I actually feel better on days where we eat in.  Even though I'm not making everything from scratch I'm buying mostly organic nonGMO foods and it makes a marked difference in how I feel.  I'm considering hiring a prep cook to batch cook for me.  My son has a friend that is interested.  Haven't gotten around to arranging it of course but I'm hoping it will happen sooner than later.

After one bust, I managed to find a chiro I really like.  (That is a story for another day.)   I'm doing phone conferencing with my sleep doc and I FINALLY got it to work so I no longer have to travel to Jamaica Plain to his office.  I've an apt with a potentially new internist.  She works with Emerson Hospital and has a background in rheumatology so might be familiar with fibro.  Here's hoping.  My old doc, while not perfect, actually had some exposure to CFS/ME through a relative that ran a clinic for patients.  I need some follow-up bloodwork from her: cholesterol, thyroid, vitD, and iron.  Tell her/teach her about my illness and get the "lose weight" lecture.  I still haven't managed to fill out all the paperwork yet.

Presently I'm push/crash cycling so I have to work on that.

I've been trying to improve my sleep space.  I was sleeping in the guest bedroom but my son has been visiting more and more since he no longer has a NYC apt.  So far I've purchased blackout drapes for the master bedroom which work great!  I bought a wedge pillow which is comfy but still smells weird so I've got it degassing.  I think the waterbed still needs some water removed as it is too hard.  I still have to find a solution for overheating with the mattress and pillows.  Probably need another cotton or wool filled pillow and a cotton or wool filled mattress cover.  Right now I wake up and I'm soaked in sweat.  I found that if I sleep across the bed I do better than if I sleep normally in it.   I also bought an AC unit for the masterbed but it isn't hooked up yet.  Turns out the central AC unit is too small for the house and only cools the first floor adequately.  The solution is to put a second unit in the attic to cool the second floor.  The portable AC is a nice stop gap measure until we refurb the central AC in a year or two.  Plus, typically I'm the only one that wants to sleep in a refrigerator.  Sleeping during daylight hours means the bedroom I'm in heats up to oven temps which wakes me up and makes me miserable.  Both guys sleep at night so the bedrooms aren't too bad for them.

Once I'm done with the masterbed, I'm going to fix the guest bedroom because damn that gel bed is AWESOME!!!  Plus I bought the adjustable frame to go under it so I can raise the head and foot of the bed to get it just right for my aches and pains.  All the room needs is some new blackout blinds.  It is nice to have a second space to sleep in.  I'm very comfortable there and sleep the best in that room.  Hopefully I can upgrade the masterbed so I'm equally comfortable sleeping in that room also.  It is a pain to drag my CPAP gear back and forth between the two bedrooms.  Until my kid gets another apt somewhere he'll be here most weekends and some weeks so I get kicked out the room every four days or so.

Other irons in the fire: I'm trying Dr Teitelbaum's protocol for increasing blood volume.  I'm still experiencing dizzy spells even with my period problem solved.  My biggest hinderance lately is dizziness on standing and getting out of breath really easily.  I figure fixing my blood volume will help.  So I ordered Vitalyte (formerly known as Gookinaid) and D-ribose powder.  I already have CoQ10 and zinc.  I like the electrolyte powder.  I bought lemon.  I add the D-ribose to it and have been drinking two glasses a day.  I'm already seeing improved brain function.  That is typically the precursor to improved physical function.  I haven't started the CoQ10 yet.  The protocol also calls for acetyl L carnitine but it is contraindicated in folks with thyroid issues so I'm skipping that part.  I might introduce it at a very low dose after I get my thyroid tested by my new doc.  That way I'll have a baseline and see how the supplement affects my thyroid.

I'm also trying to sunbathe more.  I haven't been going outside due to the heat.  I used to sunbathe late in the day after 4pm at my old house but my deck goes into shade pretty early due to all the trees so I can't sunbathe late in the day at my new place.  I'm now trying to go out no matter what for 5-15mins around 3:30pm.  It isn't long but it is better than nothing and I can tolerate the heat for that time frame particularly since I'm stepping back into the nice AC.  I always take ice water outside with me.  And I get almost naked so the sun exposure is all over and I get a good dose of sun in a short period of time.

That is about it.  This post has gotten way longer than I intended.  But I have plans.  Lots of plans.  I was getting a bit depressed but decided to take the bull by the horns and try to improve things for myself starting with better sleeping conditions.  Then food, then sun, then supplements.  Maybe new meds after I see my new doc.  Hope has returned!  Woot!

Things I want to do but haven't even thought about yet; get a new dentist, get a new therapist, hire a house cleaner, detox from mold.

Sunday, July 23, 2017

My Lady Parts

For some this is going to be a TMI post.  However, my period has been highly irregular since contracting CFS/ME and I've found that no one talks about this even though it is well known that our hormones are totally whack from the illness.  To my mind that means it is going to screw with Aunt Flo's schedule and then some.

History in a nutshell.  Prior to CFS/ME I had very regular periods which were moderately heavy on the first day and then tapered off and lasted 5-7 days total.  I could mark my calendar and it would arrive on schedule give or take a day.  I could even head off my PMS crash with B6 dose if I paid attention.  Anywho....

Then came CFS/ME.  After the first six months, when I started to get severe symptoms, my period stopped.  Being 48 at the time, I figured it was a menopause thing.  Then, six months later, it showed up but it was very heavy for two days and tapered to almost nothing after that.  This irregular schedule kept up.  Nothing for some random number of months then a ridiculously heavy period.  Slowly the periods got worse.  I started to pass clots.  I went to the ER because I was bleeding so much it was making me dizzy.  I got anemic from it.  Then, the periods wouldn't stop.  I would get the heavy onset with larger and larger clots and while the flow did taper off it didn't stop.  I would bleed for weeks until I was dizzy from anemia.  If it did stop, I would only last a few days and a new period would start again.  Finally, my new ob/gyn gave me prescription strength progesterone to stop the bleeding.  It worked.  I would let the period run for about a week and then call him for ten days worth of pills.  Finally he said no more.  I had to go see him in the office before he would give me any more pills.  So in I went and he did an exam.  He couldn't see much.  After one of my hospital visits, my CT scan of my kidney showed I had an enlarged uterus so back I went to my ob/gyn after I got out of the hospital.  I told him and he said he already knew that.  I have no recollection of him informing me of this however.  But now he wanted to do a D&C to see if I had cancer or fibroids or something else going on.  Hence the D&C last fall.  Turns out I have a sizable fibroid which was probably causing the problems.  Well my ob/gyn being very old school guy only gave me one option; hysterectomy.  Of course with all the other crap going on: mold exposure, moving, CFS/ME crash; the last thing I wanted to do was major surgery so I put it off.

This spring I found that Brigham and Women's in Boston has a special ob/gyn dept just for minimally invasive surgery.  Woohoo!!  Second opinion time!  I was nervous because I'm now over 300lbs and already had one run in with a verbally abusive doctor.  Turns out the surgeon I saw was awesome!  He was so nice and very respectful.  He went over every possible course of action available to me.

He did need an MRI before we could come up with a game plan though and that turned into its own ordeal.  I'm now so big that I no longer fit into the scanners.  I had to go to a facility that has an open frame scanner.  Again it all worked out in the end since it was closer to my new house so easy for me to get to.  But I digress...

Turns out I have a large fibroid attached by a stem to the interior of my uterus.  So we talked over the types of surgeries I could have, all the risks involved both from the CFS/ME, the surgery itself and my weight.  We also discussed some non surgical options.  After a good think, I decided on one of the nonsurgical options.  He told me that the likelihood of me going into menopause during the next 12 months was really high.  At 55 I was already in the 5th percentile of women that still had their periods at this age; i.e. my periods should have already stopped.  I am to use prescription strength progesterone as soon as my period starts to halt it.  Stay on it for ten days and then stop.  If my period continues then call him and double up on the dose.  We are going to do this for the year and see if I go into menopause during that time frame.  So far so good.  I've had one period that I stopped within two days.  I'm no longer anemic but still dosing with iron.  I need another blood level taken and I see my new GP next week so I'll ask her to do the draw for me.

I'm so happy I went for the second opinion.  The doctor was super nice.  After the initial visit we did all the follow-up via phone which helped me greatly.  He was honest about how my weight was going to affect my surgery risks but was very respectful about it and didn't shame me at all. And best of all I get to keep all my lady bits!  Woot!!

I like my plan.  The prospect of having major surgery and the following crash was just too much for me.  It makes sense to me to leave everything in place and deal with this with medication for a year and just wait things out.  Let nature handle this with a little help.

On a side note, this also means that I can try both fish oil and B12 again without triggering a nonstop period.  Both would start a period and I had to stop each one due to excessive bleeding.  So things are looking up.


Tuesday, April 18, 2017

New Pain Drugs?

Some interesting findings coming out of China regarding pain signalling.  While these experiments were done in mice and rats, the human nervous system is similar enough that the scientists expect a similar system to be in operation in humans but needs to be proved. The upshot is that both GABA and ion channel gates seem to be involved in pain signal regulation in the peripheral nervous system: i.e. the intensity of pain is regulated locally in the body rather than in the brain. If this proves to be true, the authors claim that an entirely different class of pain drugs could be developed that help relieve pain locally rather than using opiates and the like that affect the brain. I somewhat have my doubts about this last blanket statement since both GABA and ion channels exist in the brain as well as in the peripheral nervous system so a drug that affects one will probably affect the other unless they make it so that it can't cross the blood brain barrier. Anyhow, greater minds than mine are working on this and it is exciting for CRPS, fibro, CFS/ME and any other chronic pain patient.
"After spending five years studying ganglia cells taken from mice and rats in the lab, they found that they could actually exchange information with each other with the help of the signalling molecule GABA - an ability that was previously believed to be restricted to the central nervous system.
More than that, when the researchers stimulated pain signals in rats, they found evidence through this GABA pathway that the ganglia cells were communicating with each other, and regulating and changing the signal they sent on to the central nervous system."

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.

Friday, February 19, 2016

Treatments with Unobtainium

"Unobtainium is a highly desirable material that is hypothetical, scientifically impossible, extremely rare, costly, or fictional, or has some of these properties in combination."  --Google

On the occasions that I can read, I read a lot of science paper abstracts and journal articles.  I learn about all sorts of potential cures that sound fantastic on paper.  However, I see very little if any movement towards these cures actually being developed or if they are developed they aren't available in the US.  It makes one wonder if the BigPharma has a stranglehold on the market and doesn't want us to have cures that don't involve popping pills.  Hum.....

Conspiracy theories aside, here are three unobtainium treatments:

1) Phage treatment for gut infections
This involves the use of a virus that is bred to take out specific strains of bacteria, C. diff for instance, while leaving the regular gut bacteria untouched.  This is a huge benefit since the health of our microbiome is tantamount to our overall health.  Since there is a possibility I might have Whipple's, which is a weird rare bacterial infection of the gut, I would greatly benefit from phage treatment if I tested positive.  The current treatment for Whipple's is IV antibiotics for several weeks followed by 1-2 years of treatment with doxycycline.  I can't imagine the damage to the microbiome from this treatment regimen.  UGH.
Clearing Gut Infections by Jyoti Madhusoodanan   The Scientist Jan 1, 2016


2) Vagus Nerve Stimulation
I've been reading about this one for a while.  I've long suspected vagus nerve involvement with CFS/ME possibly even a viral infection migrated into the nerve itself causing inflammation.  Anyway, there have been great results in fibro patients with vagus nerve stimulation with many patients going into complete remission.  Although there are subcutaneous stimulators that are implanted like a pacemaker via surgery and also noninvasive stimulators that clip to the ear lobes, neither one is available in the US.  The subcutaneous ones are in the US but only for seizure disorders and of course the easy peasy noninvasive clip ons are only available in Europe. Geesh!  Proven tech that isn't allowed in the US.  If I could travel I would take a medical trip to the UK to get my hands on one of these puppies.  WTF!?!!?  So much for the US being the center for medical excellence.  
Vagus Nerve Stimulation, Fibromyalgia and Chronic Fatigue Syndrome (ME/CFS) by Cort Johnson Health Rising Jan 11, 2016 
3) Hyperbaric Oxygen Treatment
Again proven not only to relieve pain in fibro patients but also to reverse brain damage caused by the illness.  Most doctors will NOT prescribe this treatment.  You would think that with the CDC taking away our opioid meds they would allow this safe effective pain treatment to become standard but no.  
Hyperbaric Hope for Fibromyalgia Sufferers by Mike Williams Rice University Jun 2, 2015 
 Hyperbaric Oxygen Therapy Can Diminish Fibromyalgia Syndrome - Prospective Clinical Trial by Shai Efrati et al  PLOS One May 26, 2015