Wednesday, December 17, 2014

Brother Dearest

Warning: this is another rant session.  One of these days I'm going to have to write about some nice stuff that happens to me.  Nice stuff does happen.  I just don't write about it.  I prefer writing about my turmoil.  It helps me think things through.

The relationship with my brother has been odd to say the least.  He was raised by my grandmother and great grandmother (a separate very long story) in England and I had very little contact with him during that time.  I moved to the US with my sister and parents when I was seven and we left him behind.  He moved over nine years later after they both passed away within a month of each other.  We were great friends back then.  He taught me how to solder.  We hung out together.  Played checkers a lot.   Went to the movies together.  As he got to know more people and made friends we hung out less but still got along fine.  After I moved out of my parents house we lived together on and off for a few years.  We got along fine.  Then I moved to another part of the state.  He met the love of his life and got married.  They went to Hawaii for three years on a work contract.  Things were never the same again.

Once he got back, I kept trying to hook up.  We lived near each other again but they were always too busy.  Didn't matter how many times I asked they were busy.  Over the years this degraded into a once a year three to four hour get together the day after Christmas with a few emails exchanges in between.  Once I bought a house this get together was ALWAYS at my house.  I cooked.  I cleaned.  I hosted.  They brought beer (we don't drink) and presents.  On the years that they went skiing instead, I mailed a box full of presents which often got sent late (I'm notorious for this).  We received and envelope full of gift certificates to places we don't shop at.  In fact I still have a few of them since the stores went out of business.  The emails got fewer in number and I always initiated the exchange.  Once I got sick those stopped all together.  I still hosted the Christmas get togethers even though I was sick.  I cooked.  My husband, son and housecleaner cleaned.  My family showed up with booze, more gift certificates and the occasional exchange student.

Last year my sister changed the holiday dynamic by inviting herself and my mom over to my brother's house for Christmas.  No one invited me so I invited myself.  This didn't go well since we could only agree on Christmas eve after dinner for our get together.  This turned into a three hour car trip in heavy traffic which messed me up to complete head bobbing stage.  Luckily I had my walker with me because I couldn't stand up on my own by the time we got to his house.  Of course I also couldn't talk, track conversations or take social cues at all.  My son told me stories later of all the uncomfortable stuff I missed: sis being drunk, SIL's banter about divorcing my brother, etc.  My mom was so uncomfortable that she wanted to leave and come to my house for Christmas which she did.  We had a wonderful time.

Then this past summer there was a huge family get together that no one even bothered to tell me about, let alone invite me to.  I found out because my mom had been so excited to meet up with her old friend that my sister had invited.  The whole thing was a  huge surprise party for the two of them.
This prompted my letter to sister dearest and our subsequent falling out.

Now Christmas is at my brothers again and again I didn't get invited.  My mom has refused to go.  She is coming here instead.  She also decided to call him to find out what the heck is going on.  I know  she filtered the conversation heavily and since it is pretty much open season on hubs the version I got puts the blame squarely on hub's shoulders.  Now I could understand this if he was actually mean to anyone.  Granted he can be very socially awkward sometimes but he has never gone out of his way to be nasty to any of these people.  As he put it, "I see these people three hours a year and even then I don't talk most of the time so where are they getting this stuff from?"  The only time he saw my brother on his own ever was at a job site a couple of years ago and they had a very pleasant lunch together and chatted for three hours about work stuff.  So what gives???  We've puzzled over this at length and are at a loss.  Even if they did hate hubs that much why not see me individually.  This is what hubs and his brother do.  He sees all of his siblings sans spouses.  I have never seen my brother without his entourage in tow.  It is weird.

So now what?  I'm pretty much done.  Can't get blood from a stone.  I've tried for many years to maintain a relationship with him but he just isn't interested.  I think if we weren't related by blood we would have stopped talking once he got married.  I often wonder if I'm not SIL approved and that is what is driving this entire thing. We got along fine prior to him getting married and we are almost identical personality wise.  I wonder if he is that much of a milquetoast?

Either way, I'm done.  I'm too sick to pursue this any further.  I don't want to contact him directly because my ego can't take another rejection after that last one from my sister.  I would like to at least maintain the illusion that the relationship can be saved at some point.  Hope springs eternal.  This will get interesting if SIL goes through with her threat of divorce....

I want to say that holidays bring out the worst in some people but really it is that you can very easily hide the family dirt under the rug the rest of the year.  However, when you pick the rug up for the obligatory annual holiday get together that pile of dirt is right there staring you in the face.  It hasn't gone away just because you ignored it all year.  Someone inevitably steps in the pile and the dirt flies everywhere spraying everyone in the room.  It would be best to deal with this prior to the holidays but some people hide very well.

Thursday, December 4, 2014

It is NOT about the knife!

Why do arguments with your spouse get so weird?  It is almost like you are talking in two different languages.  You're using the same words but they have completely different meanings.

For instance....

Hubs put my good knives in the dishwasher.  I paid over $100 for each of them since they are my tools that I use daily.  One of them had a really nice wooden handle and was a Christmas present from my son.  This isn't the first time I've asked him not to do this.  In fact, I've lost count on how many times I've asked him.  This time though was different.  I lost my cool.  I started slamming doors.

Of course he came to find out what was wrong.  He couldn't fathom why I was angry.  "What did I do?  At least tell me what I did wrong?"
"You put my knives in the dishwasher."
"I know."
"You can't even say sorry can you?"
"I'm sorry I made you mad."  Luckily it was dark so he didn't see me roll my eyes.

"It is a knife.  So what?  You shouldn't be this angry over a stupid knife."
"It isn't about the knife.  It is about the fact that I ask you something, repeatedly ask you something, and you ignore my words and do it anyway."
"I don't care.  It is just a knife."
"That.  Right there.  That.  'I don't care.'  That is the problem.  You don't care.  You don't care what I say.  You don't care about my stuff.   These are my tools; my very expensive tools that I use everyday and you don't care.  More importantly you choose to ignore me, ignore my words."
"I don't understand."
"Then I can't help you.  I can't explain this any more clearly than that."
"It is just a stupid knife."
groan...........

Sunday, November 16, 2014

A Trial of LDN

Many CFS/ME patient use low dose naltrexone (LDN) with some modicum of success.  You start at a 0.5mg dose and slowly work your way up to 4.5mg in 0.5mg steps.  I've been excited to try this med since I first heard of it a year or so ago.  I even got a scrip from my now retired CFS doc but it was for 1.5mg which caused me sleep problems.  When I went to see my new CFS doc (whom I'm not going back to but that is another story for another day), I talked her into giving me a scrip for 0.5mg dose.

Last week I tried my first pill.  I took it just before bed.  I then slept for 8 or so hours and woke up with "one of those" headaches that I knew would escalate as the day went on.  Sure enough it developed into a migraine.

Now, I'm not new to migraines, having suffered from them on and off for 30 years or so.  However, I have an odd type called ice pick migraine due to the fact that the pain is a sharp stabbing pain in the side of my head.  I usually have them just over my right ear but occasionally have a milder version over my left ear.  These are excruciatingly painful but I very rarely get nauseous from them and never have aura.  When I first came down with CFS/ME my migraines became a regular monthly visitor and I had to start Celebrex to control them and my daily headache.  Apparently the CFS migraines were linked to brain inflammation.   Anywho.....

The LDN migraine was totally different.  It was along my occipital ridge at the base of my skull.  As it intensified the pain spread around to the front of my face and involved my jaw and teeth.  Instead of it being a stabbing pain this was constant.  As the day wore on it escalated to the point of photosensitivity, sound sensitivity and full blown nausea.  I skipped all my first line defenses of magnesium +B6 doses with a side of espresso, and the Excedrine migraine meds and went straight for the Tramadol and ice packs.  This controlled things enough that I could lie down and binge watch Elementary which has more dialog than flashy action sequences.

For the migraine day and the following migraine hangover day I stopped all meds and supplements while my system calmed down and returned to "normal".  I got on the LDN facebook group and started asking questions.  The basic answer I got was "oh yeah, that is normal.  Just tough it out and keep taking the LDN.  The headaches will go away in a couple of days."  They must have missed the migraine part of my post.  This was hands down the WORST migraine I've had in decades.  There is no "riding this out" or "tolerating it" until my system acclimates to the new med.  It is simply just too painful.

So now I'm scared to take it again.  They told me to titrate it down to a smaller dose.  Other than cracking a capsule open and using a wet toothpick to pick up the dust, I'm at a loss as to how to reduce my dosage further.  I would love for this to work for me.  I really really want it to work for me.  At what point are the side effects bad enough for me to give up on something entirely?  So the bottle is on the kitchen counter, mocking me daily.  Daring me to try one more time.  Was the migraine a fluke or was it really induced by the LDN?  Can I reduce the headache intensity by reducing the dosage even more?  Why didn't I get a headache with the higher dose?  I need to pick a week that I can lose to pain and recovery before I can try it again.  Right now I'm just plain too scared.  It f'n hurt!

Saturday, November 15, 2014

Sick Humor

You know you are chronically ill when your house hunting centers around the drive to your doctor's office.

Friday, November 14, 2014

In The News

Lots of interesting news of late: there is the Standford study showing inflammation and low blood flow in the brains of CFS/ME patients that hit the main stream press a few weeks ago and then there are these interesting tidbits:

1)  MIT has started a new department to study the human microbiome.  I've been wondering for quite a while now if the microbiome in CFS/ME patients has been altered by the illness.  I've heard anecdotal stories of patients being cured via fermented foods, traditional foods and/or juicing.  All of which will alter the microbiome significantly.  And of course, there is the work of Dr. Chia who believes that CFS/ME is a virus of the gut.  I would love to see some CFS/ME researchers take up MIT on its offer of money and resources for further study, maybe even Dr Chia himself.
http://newsoffice.mit.edu/2014/new-mit-center-microbiome-and-human-health-1106

2) In a completely different department, MIT has figured out how to store data in E. coli.  Makes sense since it can be used as a four bit storage device which increases storage capacity immensely over traditional two bit computers.  The funky thing is that they could be used in the microbiome research listed above.
http://newsoffice.mit.edu/2014/bacteria-storage-device-memory-1113

3) Since diving down the MTHFR (genes responsible for methylation) rabbit hole, I've developed an interest in SNPs (single nucleotide polymorphisms otherwise known as genetic abnormalities) for conditions other than MTHFR.  Low and behold a study was recently published on SNPs associated with CFS/ME.  I'm very annoyed that it is behind a paywall since I would love to read this report in its entirety.  However, here is the abstract and conclusions:
http://jcp.bmj.com/content/early/2014/09/19/jclinpath-2014-202597.abstract?papetoc

4)  And here is more detailed study of methylation problems in the CD4+ immune cells of CFS/ME patients.  I haven't read and absorbed all the info here as it is a very long report.  However, I believe it would tie in nicely to the study on SNPs listed above.
http://omicsonline.org/open-access/methylation-profile-of-cd-t-cells-in-chronic-fatigue-syndromemyalgic-encephalomyelitis-2155-9899.1000228.pdf

5) It would also be interesting to look at the genetic data from CFS/ME patients to check to see if they have anything in common with the HLA genes for chronic inflammation that is found in Lyme and mold illness.
http://www.drdaveou.com/blog/?p=406

6) And in the exciting field of epigenetics is this study on immune system changes that are intentionally induced by human direction.  This could potentially lead to treatments that could downregulate or upregulate the human immune system which would a boondoggle for CFS/ME patients.
http://www.the-scientist.com/?articles.view/articleNo/41092/title/Epigenetics-of-Trained-Innate-Immunity/








Tuesday, November 11, 2014

Anniversary Redux

So several weeks ago, hubs and I discussed the horrible anniversary and we both agreed to a do over.  We were going to pick another day and make pretend it was our anniversary and try again.

Believe it or not this one turned out WAY worse than the first one.

Me (a little over a week ago):  Well the kid is going away this weekend so Saturday would be a great day for our Anniversary Redux.  Let do dinner, possibly a movie but generally make a point of spending the day doing stuff together.

Hubs: (on Thursday night after I had an IV and was severely brain fogged): Hey, can I go out to the movies with my guy friend on Saturday night?

Me: Sure.  (I very rarely say no to these requests since it isn't fair to lock him up in the house just because I'm sick.)

Friday, Me: Hey!?!?!  We were supposed to go out for our anniversary on Saturday.

Hubs: Yeah, but I asked you about the movie with J. and you said okay.  I just figured we could go out on Sunday instead.

Me: But kid will be back then.

Hubs: He is old enough.  He can feed himself.  (We usually always have family dinners.)

Saturday comes and I'm fuming mad.  Hubs tells me that the sewer is backed up and that we have to get a repair guy in there to clear the line that goes from the house to the street.  This is 3pm.

I get on the town local's Facebook page and ask who should I call.  Turns out the town will come and fix it for free.  I tell hubs and he calls and gets an answering service.  4pm we get a call back.  Will be there in half an hour.  Sure enough he shows up about 4:30pm.  Hubs is out buying me a sub for dinner.  I show the guy the pit in the backyard that accesses the line to the street.  The pit is almost 3' deep but is full to the brim with brown water and smells disgusting.  He drags his gear over and asks me for an outlet for his gear.  I get the outdoor outlets working and plug his equipment in.  He starts work.

Hubs gets back hands me my sub; goes in the backyard and hands the guy the last of his cash (the service itself was free); comes back in and raids my wallet for his night out with his friend.  Oh and he is going to see the new science fiction movie in 3D that I would just love.  He leaves.

I eat my sub.  I keep checking on the worker.  Keep asking him if he needs anything.  He needs an extension cord so I run and go find that.  When he plugs in his gear, it pops the breaker.  I have to run into the garage, find the breaker and try to reset it.  (At this point I knew I was cooked.  I have severe CFS and here I am pretending that I'm a normal person.)  I run back out to the deck and still no power so I take the extension cord and run it from the kitchen out to the deck so that he has power and the cats can't get outside.  I go back to watching TV and the cat falls asleep on top of me.

About an hour later he knocks on the door and says he can't clear it so I go out into the yard with him for a chat.  I call hubs and ask him if the pit was full when he dug the shit out of it earlier.  "No."  So I tell the guy and we both decide that maybe the mainline in the road needs clearing out.  He leaves to get another guy to help him out.

By 6pm on the day of my anniversary redux, I'm staring at two town sewer trucks in the middle of my street flushing the main sewer line.  My entire house smells of sewage even though nothing actually backed up into the house itself.  I'm talking to the cat because I'm in the house all by myself.  Back to watching reruns of Elementary.

7pm and I'm on the deck watching the two guys trying to clear out the line from the house to the street.  They need a garden hose and running water.  Off I go to the shed.  Drag out the lawnmower so that I can get into the shed.  Drag out the hoses.  Untangle one and hope that it doesn't leak.  Drag it over to the faucet.  Get it hooked up and turned on.  Drag it over to the far side of the deck.  Untangle it three or four times so that water will actually go through it.  Place it away from the power strip so that the guys don't get electrocuted.  I collapse on one of the deck chairs.  One of the guys asks where hubs got to.  I told him he went off to the movies.  Stunned the guy asked me "You mean he left you here all by yourself to deal with this?" and he didn't even know how sick I am.  Then the whole thing struck me: this was supposed to be my anniversary redo and I'm here breathing in sewer stink helping the workers while able bodied hubs is off watching a new scifi movie with his friend.  What the F is wrong with this picture!?!?

In the irony of all ironies, I'm again eating a meatball sub on my "anniversary" and smelling sewage, just like a month ago.  Only this time I'm alone.  At least I'm not in a sports bar this time and the town sewer workers turned out to be really nice guys.  Hubs on the other hand....  What in f'n hell!?!

I'm done.  I give up.  I'm not planning anything.  I don't want to go out.  I don't give a crap.  If he wanted to take our anniversary redo seriously then he would have never gone out with his friend.  He managed to place the whole thing on my shoulders claiming that I gave him permission to blow it off.  Then me, the sicko, got to stay home with the sewer backup exerting way more energy than I have spoons for while he goes out.  I'm vacillating between being really angry and not giving a shit anymore.

Strangely we are getting along really well.  Probably because I didn't pop a cork and he got to do what he wanted.  In the meantime, I feel vaguely used and slightly depressed.  Oh and I found a gorgeous loft in Chelsea.

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.