Saturday, October 18, 2014

Apartment Shopping

Lately whenever I get really pissed at hubs I start online apartment shopping.  Lately it has become almost an obsession.  I can very clearly picture myself walking into an empty modern loft apartment with nothing.  Absolutely nothing.  No clothes.  No furniture.  No books!  Nothing.  I am there to start my life over.  A new beginning.  A new life from scratch.  

Thing is I just realized that what I'm really after is walking away from my current life.  I want to run away.  I'm so tired of it.  The illness.  The lack of friends.  The lack of family support.  I'm tired of trying to figure things out.  While I'm very very busy trying to learn biology and a way to fiddle with my supplements so that I get even slightly better, my marriage is dissolving into a puddle.  I'm so busy trying to fix me that my marriage is failing.  I don't know how to fix that either.  I can't fix me and I can't fix my marriage so I just want to run away and start over.  From scratch.  Maybe I'll do better next time.

Of course when I realized all this I knew it was impossible.  You can't run away.  Problems have a nasty habit of following you.  I won't get better by moving.  I might get slightly better if mold is involved in my illness but that is a risk.  And I could move with my husband instead of striking out on my own which is this fantasy.  He is never a part of it.  I'm on my own.  

The horrid reality is that I am not well enough to live on my own.  I'm too sick.  I can't walk away.  I can't even pack.  Heck I can't even plan.  On my best days I manage to make both breakfast AND dinner instead of collapsing in a heap by 4pm.  I can't clean.  I can't do laundry.  I can't do dishes.  I can barely cook.  I can't run away.  Hell I can't even walk away.  I need to be pushed in a wheelchair.  
Not sure where this leaves me.  I like my fantasy that I've woven together.  I love the idea of starting over.  Reality bites.  I'm in limbo for now.  

Wednesday, October 15, 2014

It's Not Okay

I came from a verbally and physically abusive household.  My father was a mean drunk.  I am both uncomfortable and used to meanness in my relationships.  I find that more often than not I just need to hear from my therapist that "It's not okay to be treated or spoken to like that."  It scares me that often I don't recognize certain behaviors as mean; that I consider them normal; that I need someone to reality check my relationships for me because I'm blind to mistreatment.  Instead I feel vaguely uncomfortable and can't quite put my finger on why and I keep trying to figure out what I did wrong.  Once the therapist tells me that it isn't me, that the other person was behaving badly, then I am swept with relief.  It isn't me.  That wasn't okay.  That person was behaving badly not me.  Once I get turned in the right direction I can figure out how to handle things.  However, more often than not I need that prompt, "It's not okay."

Where I'm going with this is my crappy vacation.  I only get to go on one vacation a year.  I don't travel from my house for overnight stays elsewhere except on 4th of July, when we visit his longtime friend, and a short vacation.  This year didn't go well at all.  Things that went wrong, let me count the ways:

  • Hubs treated the whole thing as my consolation prize for letting him drive out to Chicago to see his brother.  That is not okay.  My vacation shouldn't be a consolation prize but a time to enjoy each other's company going someplace together.
  • Hubs mentions the vast sums of money it cost him more than once.  This is not okay.  If we are that strapped for money then I'm fine with staying home or figuring out something that is within our budget.  But do NOT complain after the fact about how much it cost you.  It cheapens the entire thing and make me feel like a bloodsucking leech and somewhat worthless.  I take the message as 'you are not worth spending my money on'.  
  • Hubs kept his nose in either his phone or ipad the entire time we were together.  This is not okay.  At least attempt a conversation.  This was supposed to be a time to connect and talk and get to know each other again.  Instead I feel like I'm interrupting at best and uninteresting or a big bother at worst.  Again I take this as 'you are not worth my time'.
  • Hubs complained the entire time we were walking (he was walking and pushing me in a wheelchair) about how difficult it was to push me and how stinky the poop plant was we happened to go by.  This is not okay.  Don't pick an activity and then complain how difficult the activity is and how much I should be thanking you for doing something nice for me.  Honestly, if you are going to complain the entire time about how it is a such a chore then I would prefer to stay home.  It makes me feel horrible.  I get the message 'you are not worth the effort'.  I shouldn't have to grovel when you show me the slightest kindness.  It makes the entire relationship into some kind of dominant subordinate dynamic which isn't healthy at all.  I also feel like I have to beg to be let out of the house and no matter how crappy the event is I have to kiss your shoes to show how much I appreciate the attention and Herculean effort you put into the event.  That is really fucked up.
  • Hubs didn't help with ANY of the planning but complained when he couldn't find someplace to eat that he liked.  That is not okay in oh so many ways.  I'm too sick to plan stuff.  I'm too sick to coordinate stuff particularly after a long car trip.  I'm too sick to realize that we could take a taxi to go eat at a place where there isn't any parking or wheelchair access.  I can't look up places to go or places to eat when I have no maps and you are watching movies on the ipad i.e. no computer access.  I need your help with planning and execution.  It shouldn't be all on me.  It should never be all on me.  This was even a problem when I was well.  I was the one that was supposed to plan the trips.  It is a long standing pissing match that I can't participate in anymore.  
  • Hubs makes me feel guilty for making him help with anything.  This is not okay.  Planning should be a shared activity.  Picking out the destination.  Picking out activities.  Picking out restaurants.  Guilting me into planning the entire trip and then coming up with some excuse as to why it needs to be completely scrapped isn't cool.  You did this to me even when I was well.  Not cool.  Very not cool.  The whole "let's wing it" thing doesn't work either particularly now that I'm so sick.  This needs to be a shared activity.  Lets hope that planning our anniversary dinner redux goes better.
  • Hubs getting a non handicapped room because hey its cheaper.  Also SO not okay!  I need the room to get the wheelchair into the room and the grab bars in the bathroom.  The seat in the shower is a bonus as well.
  • Hubs moved us out of first hotel to a second cheaper hotel.  It's not okay.  Moving me constantly is such a bad idea.  This one is partly my fault since I agreed.  I shouldn't have.  The first hotel was nice.  It was in a good location.  The bed was comfortable.  It was a handicapped room.  Being cheap is not a good reason to make me uncomfortable on my one and only vacation.  For a $100 savings I had a terrible nights sleep, several days of severe pain, a week of CFS crash, a miserable last day of vacation for me, a horrible dinner that probably added to my pain and misery the next day.  So not worth the $100.  Then he had the nerve to complain that I didn't feel good.  Well no shit Sherlock!  
His behavior is probably just his temper tantrum at my illness coming out but that doesn't mean that it is appropriate.  He shouldn't be taking his anger at my illness out on me.  This vacation went wrong in so very many ways.  It wasn't until my shrink told me that this wasn't okay that I realized that it wasn't all me.  That his behavior wasn't acceptable.  That things need to change.  It needs to be different next time.  Now I just need to learn how to manage it for next time.  To make it better.  To make it more equitable.  To make it okay.  Let the planning begin.

Friday, October 10, 2014


There are tons of probiotics on the market and I really haven't looked into them.  I try to get most of them through eating sauerkraut and fermented beets and drinking kombucha.  The bug count is orders of magnitude higher in food than pills so are a much better source.  I keep buying kefir but don't drink it regularly.  I do use it to make creamy salad dressings and smoothies.

Anyway, I do have four probiotics that I try (not very diligently) to rotate through:

  1. Saccharomycis boulardii: this was prescribed to me by my food knowledgeable CFS/ME doctor and is available in the fridge section of your health food store
  2. Biffida: my treating CFS doc put me on this after my stool test showed I was deficient
  3. Fermented fish oil: recommended by real foodies everywhere
  4. Lactobacillus plantarum:  which I discovered in this article and thought might be helpful in my case
As part of my new action plan, probiotics are going to be a big part of healing my gut further.  I've come a long way in this department but am still having the occasional heartburn and am now having trouble with cruciferous vegetables.  Even my beloved sauerkraut is giving me heartburn.  Sigh....  Time for a revisit.  

Thursday, October 9, 2014

Tweaking Treatments

After my mom's visit, where I was running around a lot, and then my vacation, which didn't go as I had planned and I had an emotional meltdown, I didn't recover very well.  Lots of fatigue and brain fog.  I had a week off but spent a good deal of it in bed.  I kept hoping that things would improve but instead I kept getting slightly worse.

I was scared that it was mold.  It was the only thing that made sense to me.  I was still following Yasko's protocol closely but it no longer seemed to be working.  The under/over methylation argument didn't make sense because I had symptoms that were on both lists.  I was convinced that it was the mold so I was having very anxious moments where I was ready to walk out of my house into a sublet to get away from it.  I was even sublet shopping on Trulia.

Then I read one line in a 500+ page book that changed everything.
L-glutamine deficiency causes brain fog.  
I went to my kitchen took down the tub of glutamine that had been gathering dust on top of the microwave since I bought it months ago and cracked it open.  I took the dose listed on the tub, one teaspoon which is five milligrams.  I started to feel better within the hour.  Holy COW!!!  That was it.  I've been so fixated on GABA that I missed this.  I took someone's word on an internet forum that the glutamine would change into glutamate and that glutamate was EVIL, BAD, HORRIBLE and would do bad things to me.  Well glutamate is also a neurotransmitter that is needed for the brain to function properly and has to be in balance with GABA not eliminated entirely.  I'm also not sure the glutamine changes to glutamate anyway.  Either way it doesn't matter since the stuff WORKS!  I am now dosing at the lower rate of 1/8th of a teaspoon per day and am able to read again and my good mood is back.  No more meltdowns or 'my world is ending' moments.

Here is the info on this fantastic book I found that just got published.
Treating and Beating Fibromyalgia & Chronic Fatigue Syndrome by Dr. Rodger H. Murphree, published by Harrison Hampton, Birmingham AL.
Now that I can read again, I'm putting together a new supplement protocol based on his book.  I'll be starting with a liver detox due to my MCS which is fairly simple: ALA and milk thistle for one week, multivit the second week and then ramp up on 5HTP the third.  Then onto adrenal heal.  Then diet again which will probably be Paleo AIP.

I'll integrate it with Yasko's info and include some aspects of methylation protocol in with Murphree's info. Although he mentions methylation and even MTHFR in particular he just says to go see a doctor since you shouldn't be supplementing for MTHFR on your own.  HA!  Both my CFS/ME docs didn't know squat about this and they are both leaving their practices.  How the heck am I going to find a doc that is versed in both MTHFR and CFS/ME?  So I am on my own.  Luckily due to the glutamine my brain is working for a few hours a day again so I have to figure this out myself.  But I digress.....

I need to back track here a little.  I've been on Yasko's short cut protocol since April.  I've slowly added in more supplements to work on the CFS/ME part of the puzzle that isn't addressed by Yasko (she specializes in Autism not CFS/ME).  Slowly I've gone from six pills and three sprays to 20 pills and three sprays.  I've also started to have some weird side effects crop up such as lots of waking, tons of hot flashes, and restless legs waking me up and not letting me get back to sleep.  Just how does someone with severe CFS/ME deal with restless legs???  It isn't like I can jump up and walk it off.  Geesh.  So I had plateaued and the restless legs was annoying me and my cats who like to sleep on me.

I kept trying to read Yasko's material to sort things out.  I love her to bits and thank her profusely for making her books available for free and designing compounded supplements specifically for MTHFR.  However, my one big criticism of her work is that her writing is scattered.  She knows her stuff really really well, more than anyone else I've looked into.  She does use nice analogies but she has not done a good job of accreting all of that information down into a single well written source.  You are constantly being referred to chapters of other books she has written or papers available on Scribd or YouTube vids or the online forum that is run by her cohorts.  I end up with multiple sources up on the screen jumping between them trying to follow the complicated logic.  I have a hard enough time following one source never mind this scattershot style of writing.  I keep running across the line "I've already written about this.  Just look it up in xyz." or some such variation.  I also have no idea who the people are on the forum that answer questions.  I've used it and gotten some good answers but again they post Yasko quotes from multiple sources without the context of the quote so I have no idea of the original source or if it is applicable to my case.  I have to trust these random folk on the internet.

The other issue I have with her is that she is too general.  If you use any of her tools or tests or go through her protocol you end up with a supplement list a mile long with the instructions "try a few and if they don't work for you try something else on the list".  Yeah, that isn't helpful at all.  Many of the suggestions are compounded supplements with TONS of ingredients in them.  Trying to sort this out with brain fog is next to impossible.  I finally had a good day this week and started cross referencing the ingredient lists of the 50 or so supplements recommended to me based on my genetics and hair metal analysis test.  Turns out they all overlapped significantly to the point where I whittled the list down to four or five pills.  When I looked up another vendor I found one that whittled it down further to a single supplement.

I still have work to do to figure this out but I'm pretty much done chasing my tail with Yasko.  Now that I've found this new book I'm ready to move on.  I might return to Yasko later as I trust her for my source of MTHFR info but I need my brain working better before I can do that.  So for now I'm switching over to Murphree's protocols starting with his MCS instructions.  Not only does he list supplements but also dosing information.  I'm quite excited to try this out.

Wednesday, October 8, 2014


This is probably going to be the oddest TV show review that you are ever going to read and yes it is going to be somewhat uncomfortable.

I LOVE science fiction.  I've read it since I scared myself silly back when I snuck about reading one of my dad's books when I was 12 or 13.  It was, to me at the time, a very scary story about an invisible monster alien.  Ever since then scifi has been my favorite genre.  Needless to say the bulk of my TV and movie watching are science fiction shows.  I loved the first three seasons of Torchwood which is an adult version of Dr. Who, a show I've watched since I was a kid when Tom Baker was Dr #4.  The third season didn't go so well and almost got the show canceled until Starz picked it up for a joint season with the BBC.

I was very angry that Starz locked the fourth season out.  Only Starz subscribers could see it.  I was very angry at this turn of events.  I wanted to see the last season.

This past month I decided to subscribe to Amazon Prime so that I could get access to Falling Skies and Orphan Black both scifi shows that I've heard a lot of good things about and low and behold I found the last season of Torchwood also available.  So with much excitement I've spent the last three days binge watching it.

Warning spoilers ahead.  If you don't want me to ruin the ending for you stop reading right now.

The show somewhere along the line lost its way.  This last season strayed very very far from its original format and the quirky bits that originally drew me into it.  Two things really stood out for me and got me wondering just who the heck wrote this thing:  lots of gay sex, and an artifact that looks like a giant three story high vagina that needs the main characters' male blood sent into it to return the world to rights.  There is a subplot about a pedophile that become famous, some fat shaming and grossly misogynistic bits thrown in for good measure.  All leaving me to wonder what the hell were they thinking!?!  Did some woman hating gay guys write this?

I am a prude and don't really like butt naked hetero sex scenes never mind same sex scenes.   While I am glad that this is finally getting air time and it is becoming normal for gay characters to hold leading roles in shows while being in romantic relationships, I seriously don't need to see their very naked butts.  Please note that I say the exact same thing for straight sex scenes.  Lets leave something for the imagination please.  This is supposed to be a regular TV show and not some mild porn.  Okay, I'm almost off my soapbox.

If it were just the above, I would let things rest and just chalk it up to the writers getting some much needed air time and equal opportunity for the gay community, which I'm 100% behind as long as I don't see any behinds.  However,  and this is a big one, what the hell is up with that three plus story high vagina that is screwing up the entire world?  And why do the two main male characters of the season have to bleed profusely into it to set things right again???  I forgot to mention that rocks are constantly being pulled into it.  People with impure soles die when they are in its presence.  It is a huge life sucking vagina.  Something I read in the very distant past, mentioned that this was a man's worst nightmare, a vagina that sucks them in and mutilates or kills them.  This is the first EVER science fiction show, movie or book that I've read or seen that has had this imagery in it.  I mean they could have made it look much less vagina like, say making it round instead of a huge slit or gray instead of various shades of pink.  They could have had the main characters jump into it rather than have them bleed into it.  Rocks and debris didn't have to be constantly sucked into it.  I mean come on!!  This is just horrible!!  What on god's green earth were they thinking???  At least the pedophile killed himself in the end and was generally a despicable character through out the season.  Bill Pullman did a good job of playing him as a not quite right in the head character.  However, I want to see aliens and spaceships and weird technogadgets not pedophiles, gay sex and huge life sucking vaginas.

After watching the disaster of the last episode I can now say that I'm happy that it got canceled.  I might at some point in the distant future watch the first two seasons again since those were good.  But I'm not watching the last two ever again.  Not worth the time, even my copious amounts of time.