Thursday, August 28, 2014

Sister Dearest rev.2

There is no doubt that relationships of all kinds are stretched to their limits when you become chronically ill.  Sometimes those relationships break.  

I originally wrote this post two weeks ago when it was all still very raw.  I had to save it as a draft because it was long and nasty and angry.  So here is the revised version.  While it sticks to the facts more and I don't ramble as much, I still get incredibly angry so there are some bad words in it.  Consider yourself warned.  

It has been only two weeks but it already seems a lifetime: I broke off all contact with my sister.  Things have been weird between us for about two years.  She stopped visiting.  I can't travel so that meant no contact.  We were never ones to chat via phone or email.  Mostly I would hear from her when she wanted something.  So this meant no conversations casual or otherwise.  We did visit in passing at family functions. Mostly it was the big hug at the beginning and end of the visit like we were long lost pals but the bulk of the day would be me joining conversation groups only to have them dissolve around me.  After a few attempts at having conversation with various family members, I would decide I was too tired to participate in this game and go into a quiet room to sit by myself for the remainder of the event.  

The cold shoulder from my sister reached new heights this year: I had to invite myself over to my brother's for the family Christmas get together (he never hosts Christmas so I can only imagine that my sister instigated it).  Both my brother and sister didn't visit Mum and I when we were all on Cape Cod together this spring.  Then I wasn't invited to a family dinner this summer that my sister had arranged.  

I had enough by this point and called her out on this.  I sent her a simple to the point email asking why I had been excluded.  (You have no idea how big a deal this is for me.  Standing up to my sister is like challenging Thor.  You risk bringing her wrath down upon your head.  I was proud of myself for sending the email.  It took great amounts of courage for me.  Anyway, I digress...)  I got odd lame excuses for the exclusions.  Things like it was all my brother's fault for the Christmas exclusion even though he never makes arrangements and she ALWAYS invites him to my house.  Or that it was my fault for not arranging the dinner party myself.  While this isn't stellar behavior, it is what I expected from her.  If it was only that, I might have dropped the entire thing.  However, the second half of the email took the biscuit.

The first paragraph was a bizarre attack on my husband for some slight that occurred over two years ago.  None of us can figure out what happened to prompt this.  My sister though has never gotten over her man hating days.  Going through three and a half husbands doesn't elevate her opinion of men either and I think my husband is just a convenient target.  Misandry at its finest.  

I do know hubs was horrible during the first year of my illness and I did almost leave him.  However, he has turned things around and our marriage is almost back to normal now.  It took two years but it looks like things are back on track.  My sister on the other hand seems to want war.  

Okay, horrible and weird but still not a pull the plug on the relationship offence.  This is just normal bat-shit crazy sister stuff that I've come to expect from her.

The next paragraph was the kick in the teeth though: 
"I surround myself with positive people. ...  I choose to have positive thoughts and be with positive people. People that can see the good in everything.  [sic] Not the little negative nit picking little things. ...  Bottom line [sic] I believe that you and I have never had anything in common and never will. ... I wish positive things for you but I do not choose to be around you."

I did do some heavy editing but it was necessary for clarity.  The actual paragraphs wandered all over the place: telling me how awesome my brother was for taping my mom skating; accusing me of mocking my brother; accusing my husband of making jokes at others' expense; accusing me of laughing at said jokes; she doesn't want to be in the same room with my husband; her wishing I would get well; etc, etc.

I would have thought she wrote this while drunk but it was sent at 8:30am.  The writing was all over the place hopping from topic to topic.  But, the basic gist was I'm a bad person, my husband is a bad person, and she wants nothing to do with either of us.  Sorry you are sick but fuck off.

Involved in the middle of that mess was the following question:
"If you were handed today a miracle pill that you could take, and your CFS and other ailments would just disappear - which means that you would have to go back to work tomorrow, clean the house again, and lead a "normal" life....would you take the pill?"
How bloody insulting is that!?!  I've done nothing but try to find a cure or even symptom relief.  Some of my "cures" have made things worse (see the posts on Cipro).  Luckily most cures have been ineffectual or had side effects that went away when I stopped taking them.  Some have helped as I've talked about before.  I would love nothing more than to lead a normal life again.  I HATE HATE HATE her for even asking this.  How horribly mean is this????  She is implying that I like sitting around the house not doing anything.  That I like being sick.  What the ever living fuck!?!

 I just can't write about this without getting horribly upset and angry.  How DARE she!?!  Positive thoughts my ass!

So after much hand wringing, discussions with hubs and mum and my therapist, I cut off all communication with her.  I sent her a brief email stating "There will be no further communication between us.  I will only contact you with regards to Mum's health and well being.  I have copied Mum and [brother] to make them aware of the situation."  If I engaged with any of her content, then a massive massive fight would ensure.  I wouldn't win.  It would take a huge amount of energy on my part for very little gain.  I thought long and hard about things and decided that the best course of action was to severe all contact.  Even my therapist told me that it would be the healthiest thing for me to do; the best way to take care of myself.

You know what I felt afterwards?  Relief.  I'm done with her.  I'm done with her crazy.  I'm done walking on eggshells around her scared that I'll set her off and get yelled at.  I don't have to host any more weird family gatherings where the only people that actually talk to me are my Mum and my niece.  You would think that after feeding and hosting that lot for decades they would at least talk to me.  Fuck them.  Fuck them all.  I'm done.

In an odd way I feel like this illness has been an opportunity in disguise.  I have lost friends and am now shedding family.  I have lost my job and my career.  But in return my relationships with my mother and son are better now than before.  Hubs and I are on the mend.  I can pick a new job.  I can make new friends.  I can make my life so much better than it was.  All new and shiny and one that will hopefully make me happy.  I'm looking forward to my new life.  I think it will be spectacular.

Saturday, August 23, 2014

CFS vs. Broccoli

Several years ago I tried (and failed spectacularly) to follow Dr. Wahls diet.  In it she calls for NINE cups of vegetables with three cups specifically cruciferous vegetables; i.e. broccoli, cauliflower, cabbage, brussel sprouts, etc.  I ate all of these growing up so I dove in with gusto.  With each meal, I had something from the cruciferous family.  With each meal, my heartburn got worse.  It got so bad that it felt like someone was holding a blowtorch to my chest and it was set on max burn.  Holy cow did it hurt.  I called my integrative doc and asked what the heck was happening.  He asked about my diet and I told him I had switched to Wahls' protocol.  He immediately told me that the heartburn was directly related to the cruciferous vegetables and that I had to cut back.

Nutso.  So much for that plan.  I knew of two people that had their CFS drop to non-existent or manageable levels after incorporating huge amounts of vegetables in their diet.  Here I was stuck with rip my chest out heartburn.

Now, two years later, I find this little gem:
"Is Broccoli Good For You?"
Turns out that a chemical in cruciferous vegetables:
  • Poisons mitochondria (cell energy generators)
  • Inhibits microsomal enzymes in the endoplasmic reticulum (cellular manufacturing and detoxifying centers)
  • Generates reactive oxygen species (these are damaging “pro-oxidants”)
  • Interferes with thyroid iodine absorption
  • Disrupts epithelial barriers (can poke holes in sheets of cells)
  • Depletes glutathione levels (the most important antioxidant inside our cells)

So maybe eating broccoli isn't such a good idea for me.  Maybe my heartburn is trying to tell me something.  One of the reasons that I trusted Dr. Wahls is that she has done extensive research on food, diet and MS.  This is how she developed her diet plan.  Makes me wonder how she decided that we need such a huge amount of cruciferous vegetables in our diet to make us healthy.  This article is the complete antithesis of her work.

In my case it doesn't really matter because right now I can't eat much of any of the cruciferous veg.  Even sauerkraut is giving me heartburn two hours later.  Dang.  I am so not happy about this.

Friday, August 22, 2014

A Question

I'm in the beginning stages of learning biochemistry and neurochemistry so I'm not completely sure I'm interpreting this correctly.  If I am guessing correctly, then I just pulled on the right string in this huge knotball of an illness.

In the video (I posted yesterday) the modeler discovered that CFS/ME patients were all deficient in Phenylalanine.  Of course I had to look this up on Wikipedia:

Two things jumped out at me:
1) If people can't metabolize pheylalamine, they have to monitor protein intake to make sure they don't eat too much.
2) Pheylalamine is involved in neural glutamate receptor binding/activation.

If I'm reading into this correctly it explains two things to me:
1) CFS patients have too little pheylalamine rather than too much.  My craving and eating large amoutns of protein might help build up pheylalamine levels in my system since it is deficient.  I always feel better after eating a heavy protein meal.  Light meals even with small amounts of protein just don't cut it.  I feel lousy later and need to eat again much sooner than normal for me.
2) The phelalamine deficiency might be the origin of the glutamate/GABA imbalance in the brain.  Makes me wonder if the same underlying mechanism exists in autism.  The supplement protocol I'm following was originally designed for autistic patients who also have a glutamate/GABA imbalance.  Maybe the trigger is different but the same treatment works for both.  No matter; it seems that the pheylalamine shortage might be the cause of excess glutamate in the brain.

Now take all of this with a grain of salt since I'm guessing here.  I could be totally wrong.  It is interesting none the less.  I'm looking forward to the treatments that Dr. Klimas and company come up with if the pheylalamine model works out.

To be honest I looked up the Wiki article hoping that I could figure out which supplements I could take.  However, reading the article, it sounds too dicey.  It would be playing with brain chemistry in a big way based on an unproven chunk of science.  Mathematical models don't always work out the way we want when applied to real life.  I'm already making people nervous screwing around with genetic testing and taking supplements based on a doctor I found on the internet.  This would be too cutting edge even for me.

Thursday, August 21, 2014

CFS/ME In The News

Finally some encouraging news from people researching CFS/ME.  People are finally starting to look at the illness as a systemic, dynamic one and looking into genetics/epigenetics.  WOOT!!  This is so very exciting!

First a YouTube video on the mathematical models being developed.  From what I gather it looks like it is based on modeling of dynamic communications networks (yes I used to listen to lectures on this stuff prior to getting sick: I know more about optical packet networks than I care to).

For some reason I can't embed the video but here is the link:
And an article on the video:

Here is an article on epigenetics and CFS/ME:

Good stuff!!