Wednesday, January 14, 2015

Twisted Logic

I've been having a really difficult time with my sister for the last two years.  It finally culminated, at my therapist's urging, in cutting off all contact with her for my own piece of mind and general health.  Of course she is still giving my mother heartburn and information wends its way back around to me.
For some reason she doesn't think I want to get better.  I finally found out why, I'm not seeing the type of doctor that she approves of.  She doesn't like the fact that I'm being a "know it all" regarding my illness and doesn't agree with my treatment plan, not that she actually knows what it is. Sis wants me to travel six hours to see the "real" doctor in the Adirondacks because she "cured" herself of CFS and fibro with magnets and aura cleansing.  The world famous CFS doctor and the functional medicine doctor that are treating me that have been treating actual patients for decades obviously don't know what they are doing.  And because I choose to see them instead of her "real" doctor I obviously don't want to get better.

To take this at face value, I would never EVER hired her as a patient advocate.  She never researched my illness, never mind treatments (there are none).  She is taking this holistic doctor's word on her self diagnosis and treatment plan.  She doesn't understand that there are degrees of severity of the illness.  The doctor might well have had real CFS.  People that contract the mild form often go into remission after two years.  The doctor might have treated herself with her magnets etc for two years and POOF she is cured.  My sister really doesn't have a grip on the notion of correlation doesn't equal causation.  She doesn't know that both of my CFS treating docs told me that I was the worst case of CFS that either of them had treated, although via the internet I do personally know of patients that are worse than I am.

I looked into the "real" doctor to see what treatments she offered.  In the same paragraph she has EMF blocking plan along with a mega spectrum photon generator to re-energize your cells.  What the what!?!?!?  The photon generator is basically a lighted neon bulb that you rub on your body giving yourself a mild electric shock, i.e. it generates an EMF field and you are giving yourself an electric shock.  It even says to wear rubber gloves when using it to insulate yourself from shocks.  Talk about quackery.  And I'm supposed to hop in a car and drive six hours to see this shyster?

Never mind the hocky treatment, there is such a thing as respect for the patient, patient rights, etc.  Even if she had picked out the best CFS/ME doctors in the country she has no right to second guess me on my own treatment.  She definitely has no right to say that I don't want to get better just because I'm seeing doctors that she doesn't approve of.  She doesn't have a right to come up with her own treatment plan and then get angry when I refuse it.  This is all sorts of wrong.

However, to get at the core of this issue you have to realize that this is my sister's belief system.  She has swallowed the wishful thinking philosophy hook line and sinker.  That whole If You Just Have the Correct Thoughts Then Wonderful Things Will Manifest In Your Life thing is her core belief system.  Me and my illness flies in the face of that.  I'm not wishing hard enough.  I'm must not really want to get better because I'm still sick.  Chronic illness doesn't fit in neatly with this philosophy.  The patient must have done something wrong to manifest this illness.  They must have thought the wrong thoughts because health hasn't returned.  This is why I walked away from this philosophy years ago.  Something didn't quite sit right with me about it.  Sorry Wayne Dyer.  This leads to blaming the patient for becoming sick and staying sick because they obviously did something wrong.

Buddhism makes more sense to me.  Things change.  Things always change.  Life is impermanence.  We have been given this gift of a body and this life for a brief moment in time.  We are lucky when it works well and even lucky when it breaks.  Wait and things will change again.  Suffering comes from wanting.  Suffering comes from yearning.  Let go of wanting and suffering will end.

As you can see we have a huge chasm between our core belief systems and this underlies her comments.  If she accepts that I have a chronic illness then she has to change her belief system.  No one reacts well to a challenge to their core belief system.   It is the framework with which we understand the world and therefore sacred to a degree.  Some people can alter that framework after much thought and deliberation.  Others can not and will deny reality rather than change their beliefs.  I am coming to believe that Sis sits in the later camp.  Her beliefs are right: reality is wrong.

Because these comments are coming from her belief system they can't be argued with.  She has had a rough life and her belief system is holding her afloat right now.  All be it the wishful thinking isn't working for her either.  There will be no discussion or reasoning with her.  Sometimes all you can do is walk away.

Saturday, January 3, 2015

When Things Get Weird

It is a truly odd day when you realize that you are more successful financially than your siblings despite being fully disabled and the reason they act so weird towards you is that they are jealous of you.

I am so glad I decided to start doing financial planning 20 years ago and live my most productive years out of debt.  It meant that being disabled hasn't bankrupted my family and I get to live in relative comfort despite not being able to work.

I am one lucky person and I need to be more grateful for what I've managed to accomplish.  

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."

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.

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.

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:

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.

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.

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.