Tuesday, December 29, 2015

CFS/ME and The Gut

One of my first health problems after coming down with CFS/ME was my gut.  Food made me sick.  Very sick.  I would get nauseous no matter what I ate and my acupuncturist put me on double boiled white rice just so that I could eat something.  I rapidly dropped over 20lbs.  My gut slowly recovered and over the course of a month or so I could slowly add foods to my rice and eventually graduated to soups.  That was in 2010 but that was the start of my gut problems.

I damaged my gut decades ago.  Unbeknownst to me I had both osteoarthritis of the spine and fibro.  All I knew is that I was in great pain so I started taking the industrial strength ibuprofen I had been given for use after a surgery.  It very quickly wrecked my intestines.  About 15 years later I developed a wheat intolerance so my gut was pretty not okay even before the CFS/ME insult.  Then I contracted CFS/ME.  It wasn't until I did a Paleo Whole 30 and then a modified GAPS diet for a year after that that my gut finally started to heal.  Four years later and I can now tolerate wheat in small doses and am generally much better off than I've been in years.

However, my gut problem have come back to haunt me recently.  After four years straight on Celebrex for my headaches and joint pain, my gut finally rebelled and put in me in the hospital with gastritis, a painful inflammation of the gut lining.  So it is with some interest that i saw this recent study done on the gut microbiome of CFS/ME patients.  The only bit I don't agree with the authors on is that they jump to the conclusion that the differences they discovered in the gut and blood of PWME are the cause of CFS/ME symptoms.  That is a HUGE intellectual jump with not a lot of foundation under it.  Other than that the study has some interesting results.




  • Published: December 18, 2015
  • DOI: 10.1371/journal.pone.0145453




Saturday, August 22, 2015

The Downward Spiral

I'm in a prolonged crash.  It has been a crappy year for me.  I had a bad sinus infection this past spring and I had to do several courses of antibiotics to get rid of it which messed up my stomach.  Then due to the insane weather here and my weird sleep schedule I haven't been able to sunbathe to catch up on my vit D.  To top it all off I've had several super heavy periods that needed prescription progesterone to stop.  Each of them sent my already low iron levels into the basement.  It has been hot and humid for weeks now which makes me so much worse.  Even in the AC I'm sitting directly in front of a fan.  The AC unit in my bedroom is so old it no longer dehumidifies the air so while it is cooler in there it is still soggy. Those are the physical hits I've been dealing with this year.

The emotional hits haven't helped either.  My CFS consulting doctor retired earlier than he told me he would.  I thought I was going to have one last visit with him this year but I called and they told me had already left the practice.  I shopped around and carefully chose a new treating CFS doctor and after herculean efforts on my part managed to get an intake appointment, extensive nutritional testing done and one follow up appointment.  At the second appointment he gave me tons of paperwork.  Reams of it, which I thought odd at the time.  A week later I got a letter that the practice is closing due to financial difficulties.  It has been a month since then and I still haven't received my medical records from them.  They won't answer the phone and won't call me back.

So I tried calling my second choice and they don't take insurance of any kind.  The intake process alone will be over $1000 out of pocket and I can't get a straight answer out of the office chick as to what their fee schedule is.  I think I'm going to try back at the Marino Center again but with a different doctor.

Then to add insult to injury I get a letter from Prudential that they are reviewing my disability case so I have to assemble two years worth of medical records, sort them all out, make copies and write extensive explanations of my illness and why I can't possibly go back to work.  GAH!!

I want to go on vacation.  I want a house on the beach so I can just walk out the back door and straight into the water.  I don't want to cook.  I want to sleep and be quiet for at least a week.  I don't want phones or internet or TV or paperwork or doctor appointments or endless minor arguments with hubs.  I want to be alone and quiet and well fed and sun drenched and water logged.  Even us sickos want a vacation.

Tuesday, August 11, 2015

Vagus Nerve

From personal experience, I believe that inflammation is key in generating a good deal of the symptoms of CFS/ME. I got considerably better when I had cortisone shots in my joints for an unrelated problem.  The symptoms quickly returned as the steroids wore off.  None of my docs would prescribe a regular course of steroids to help with CFS/ME since it would be an off label use.

It turns out that stimulating the vagus nerve reduces inflammation in the ENTIRE body without the nasty side effects of steroids.  Now I'm on a quest trying to find out how to stimulate my own vagus nerve.  While I would love to have the pacemaker type device implanted in my shoulder, it isn't available for use in CFS/ME yet.

Here is various information on the vagus nerve and vagus nerve stimulation.

BBC podcast (20mins long and explains the pacemaker style device)
http://bbc.in/1ycMkCm

The Gut Brain Axis (hint the vagus nerve is the info highway between the two)


Cort Johnson's article on The Search for Neuroinflammation in CFS/ME
http://www.cortjohnson.org/blog/2015/06/16/search-neuroinflammation-me-cfs-fibromyalgia/


Of course this would all go faster if someone would cough up a sizeable chunk of money for some research on actual CFS/ME patients.  If it could get approved I would be first in line to give it a try.

Sunday, June 14, 2015

House Shopping

Been gone a long time I know.  I just haven't felt like writing.  Of course being wicked sick for most of the spring season didn't help matters much and I've been juggling doctors' appointments.  But to be brutally honest I just haven't felt the urge to write.

On to today's topic: house hunting.  Hubs and I finally purchased our own house in 2000.  We knew very little about house ownership.  Although both of us grew up in single family homes, neither of us were involved much in maintenance.  In hub's case he was too young and his Mom moved into a condo after his dad passed.  In my case, my father didn't maintain the house at all.  I had to learn carpentry, painting, electrical and plumbing from books in order to fix faucets, light switches, etc.  I knew nothing of construction, heating systems, etc.

The house we bought was originally built as a small ranch with slab heat.  A hundred year old map of the area showed swampland and there is indeed still swampland in walking distance of the house.  Hence the high water table and the slab style house (wood structure on a single poured slab of concrete).  The structure was then added on to twice.  The first addition was by the original owner who put on a second floor.  The second by the second owner who added a massive livingroom, kitchen and loft to the back of the house.  The fact that there is no basement has lead to some funky plumbing which for various reasons have frozen and burst at different points during the life of the house.  Then one of our renovations drove a cement fastener through the return line of the heating system effectively killing the slab heating system.

During our various renovation projects we found evidence of mold inside the walls from the aforementioned leaks.  We would remove the damaged materials and then put up fresh insulation and drywall.   The leaks had been repaired at some point but the water damage inside the wall hadn't been addressed so mold grew.  After the slab heat quit working, I started noticing musty smells in various corners of the original building.  Then I learned that concrete isn't supposed to be in contact with the timber framing of the house.  I know for a fact that not only do the walls sit directly on the concrete slab but that the slab is not sealed and the carpet is just laid on top of the concrete with only the rug pad as a barrier.  So NOT cool.  The quilts that were stored under the bed smelled musty when we brought them out.  I can no longer store paper goods under the stairs since they smell musty when brought out.  I guess the slab heat used to burn off all the mold and mildew but now the cement is just wicking the damp from the ground inside the living areas right up through the rugs.  Sigh....

Last fall I started to follow a mold group on Facebook which scared me silly.  While I have had fibro since my mid 20s, the worst flare ups have been during construction projects on this house.  I haven't gone through and verified medical tests with construction dates but if I were a betting person I'm guessing that there is some correlation.  I do know that being shut in the house over the winter makes me worse.  Again not sure if it is vitD deficiency or mold exposure or both.  After scaring myself, I decided that I want a new house.

Hubs doesn't want to fix anything anymore either.  Once I got sick we  also didn't have the money for huge projects and he prefers to use the money we do have on cars and racing.  So we have a house that still needs a new kitchen and quite a bit of work to remediate the mold problem.  Easier to move.
Now we are house hunting or should I say I'm house hunting.  I hand hubs a list of houses that he rejects for various reasons and I go back on Trulia again.  He has finally started to look at houses but only the ones he likes that have huge garages attached.  We just missed a house that would have been perfect for me but only had a two car detached garage.  He waited too long to arrange a viewing and it is under agreement.  Poop.

Today I went to look at one and it is such a mixed bag.  It is perfect for him but pretty horrible for me.  The layout is super funky because it has had two large additions put on.  The driveway and garage are at basement level.  The front door is between floors as it is a split entry.  The main floor has a small kitchen, living/dining room, decent size bedroom and the only full bath.  Then there are nine steps up to the rooms above the garage which are a HUGE master bed with walkin closet and another large bedroom and a small useless sitting area.  The master has a small deck with a spiral staircase to the backyard.  The kitchen has a balcony but no stairs into the rear huge family room addition.  The actual access to the family room is down the front stairs and through the basement.  Access to the backyard is the same, down the front stairs and through either the basement and family room or through the workshop: i.e. grocery hauling and BBQing will reach a whole new level of pain in the ass.  I also won't be able to make it outside if I'm doing badly.

The upshot is hubs LOVES the garage and workshop and it is laid out perfectly for him.  For me all sorts of renovations have to happen to make it usable for me: at least one chair lift, a brand new bathroom (there is a tiny corner model shower stall that won't fit a shower seat in it), either a wheelchair ramp to the front door or a step removed to make a wheelchair friendly path from the garage to the front stairs and possibly another lift/staircase from the kitchen to the back family room.  The basement room also needs work as it is laid out terribly and I would love to have a clothing care room that would include the laundry, sewing area and ironing area.  Plus the downstairs bath only consist of a toilet and sink crammed in next to the HVAC unit.  Ideally a powder room should be installed next to the master bedroom since there is no bathroom on that level despite the colossal master bedroom.

I like the location.  I like the land.  You can still hear some road noise despite all the trees but there are tons of birds.  Apparently the traffic is pretty bad in the area so things will be worse not better in that regard.  Easy access to NH from there though.  The border is 10mins from the house.  I would need new health care providers since trekking down from there would be just too much for me and also all the people I see would be outside the paratransit coverage area.  Good thing there are two large medical hubs near there but they won't be as good as where I am now.  I'm really not looking forward to doctor shopping again.

It is such a mixed bag.  Some of the renovations are great but the layout is dumb and the kitchen is small.  If I make the kitchen bigger it is going to overwhelm the space it is in but I need more in order to cook properly.  Lots and lots needs fixing and I don't know if hubs is going to take care of that.  I guess I don't trust him in that regard since the renovation of this house didn't go the way I wanted and it was never finished.  My current kitchen is literally falling apart since they installed really cheap nasty cabinets when it was thrown together in the 80s.

I didn't smell any mold in the new place but the shower stall is horrible and I'm worried that when that gets pulled away from the wall they'll find problems back there.  There is also water damage in the workshop where the back deck is which means there will also be water damage in the family room that can't be seen due to the flooring.  I think the ground is probably pitched towards the house so the runoff from the roofs ends up seeping into the building.  In that case the entire deck has to come out in order for it to be repaired.  Probably a french drain needs to be run around the outside to get the water away from the house and then the deck needs to be rebuilt.

Nice place but lots of repairs and upgrades need to happen to make it even usable and bring it up to code.  Geesh....

And then there is all the furniture we would have to buy since we have to get rid of most of our old stuff due to mold.  The whole thing makes me sad and angry.

Friday, June 12, 2015

Oh Mr. Sun, Sun Mr. Golden Sun....

This just hit the press

http://onlinelibrary.wiley.com/doi/10.1111/joim.12251/abstract

It is a 20 year study showing that women that avoid the sun have a higher all mortality rate than those that sunbathe.  Science is starting to back up Stephanie Seneff's ideas.

Sunday, March 1, 2015

Game Changer?

Here is the link to the actual science paper on CFS/ME/SEID causing the immune system to go into hyperdrive during the first three years of illness.  Hopefully this will be the game changer for my illness.  We now have a potential biomarker if the illness is caught within the first three years.  Now to wait not so patiently for treatments.

http://advances.sciencemag.org/content/1/1/e1400121

Saturday, February 28, 2015

Spock

Normally the life and death of celebrities both entertainers and scientists don't bother me much.  However, the recent loss of Leonard Nimoy has affected me deeply.  I'm old enough to have watched the original Star Trek.  I watched for many many years often seeing episodes multiple times.  The show had a profound influence in shaping who I am now.  I came to understand the absurdity of racism, the value of sentient life and the wonders of science and space.  Spock was my favorite character and from what I can remember the first person that I ever admired.  He was smart, knew tons of science and had no emotions.  Having an extremely sexist father emotions weren't valued but rather seen as a weakness so I aspired to be like Spock.  I wanted to be devoid of emotion but smart as a whip and know lots about science.  He heavily influenced the core of my being while I was at an impressionable age.

Oddly I never knew much about Leonard Nimoy the person.  My husband had met him once about ten years ago when he sat in front of him with his friend William Shatner.  Hubs was mixing sound for a Klezmer band at the time.  That was the first time I found out about his Jewish roots.  Since his passing I seen some of his gorgeous photography and found out that he was a supporter of the fat activist movement.

Each time someone posts something about him I cry.  I am in mourning.  He was such a huge influence on the way I am.  I can never thank him enough.


Astronaut Terry Virts captured this photo from the International Space Station flying over Boston, where Leonard Nimoy was born.

"May the Lord bless and keep you and may the Lord cause his countenance to shine upon you. May the Lord be gracious unto you and grant you peace." The accompanying spoken blessing, "Live long and prosper."

Wednesday, February 25, 2015

Thyroid

CFS/ME/SEID just ate my thyroid.  It is no longer working very well and I started taking synthroid a few days ago.  Of course this has sent me into a mega relapse.  I have about a 2-3 hour window before crashing hard.  Last night I went to bed at 8pm and slept for 2.5 hours and went to bed at my regular 5am bedtime just as tired as if I hadn't slept.  I'm about to go to bed again and it is only 8:30pm but I can't keep my eyes open.  So here are a couple of articles on Hypothyroidism that I want to save for later when I can read and remember things again.

http://www.hashimotoshealing.com/hashimotos-mthfr-gene/

http://drknews.com/breakthrough-research-hashimotos-diet-coming-soon/

Tuesday, February 24, 2015

Ms Period Meet Mr ME

Ever since I contracted CFS/ME/SEID my period has been wonky.  There has been quite a bit of debate among my doctors as to whether it is CFS or menopause.  The cause doesn't really matter to me but the effects have been weird and occasionally disturbing.  Basically I fluctuate between three states at random intervals: no period at all, spotting and deluge.  I've gone as long as six month with no period and also had one very heavy period for six weeks where I had to be put on prescription progesterone since I was becoming anemic from all the blood loss.  Yuck!

Well, science has caught up with reality

http://www.eurekalert.org/pub_releases/2015-02/tnam-sfl020315.php

and

http://www.ncbi.nlm.nih.gov/pubmed/25647777

Thursday, February 19, 2015

Leptin and Brain Inflammation


Feel free to start at 5:50 to skip the introductory stuff and them futzing around with the software.

Wednesday, February 18, 2015

Medication and Supplement Review

For the last year I've been working on MTHFR thinking that GABA/Glutamate was the key to making my brain work again.  I got the idea after finding out that being floxed causes glutamate to become dominant which result in brain fog and cognition issues.  Ever since then I've been on a quest to make my brain work well like it did after being floxed but without the severely debilitating joint pain and anxiety attacks.  So far, I've had minimal success.  I had some improvement when I first started Yasko's shortcut protocol but leveled out after a few months.  Of course this winter I've backslid horribly and the MTHFR supplements aren't helping keep the CFS/ME/SEID in check.  However, I might have been misguided...

I was just searching my old posts for information on Cipro and ran across some information that I had forgotten about.  This is one way my brain isn't working at all.  I get hyperfocused on one thing and forget all the other stuff going on at the same time.  What am I referring to?  It turns out I was experimenting with several treatments at the same time as being floxed.  I'm guessing that they all interacted in some weird synergistic way, particularly since one of the treatments involved Chinese herbs in the form of Equalibriant, which NONE of my doctors understood.  By all counts, floxing should have made my brain function worse but weirdly it got vastly better.  Upon review I was not only taking Equalibriant but also started my first B12 shots i.e. kickstarting my faulty methylation cycle.  So I had three things going on at once: methylation cycle working again, whatever the heck Equalibriat does and getting my neurotransmitter biochemistry seriously rearranged.  All at the same time.  No wonder I had the wonky reaction.  

I had been wondering why I dropped Equalibriant and going back over my posts it looks like I had mistaken the floxing symptoms for side effects of the Equalibriant.  Thinking it was the supplement I halted it.  Of course that didn't stop the symptoms since they were actually from the Cipro/Levo.  I'm guessing all the problems I had with the B12 shots were also due to floxing.  I remember having really bad reactions to the shots when I had originally tolerated them well.  We kept reducing the dosage until I finally just switched to sublinguals since I could no longer tolerate the pain from the shots.  

The entire reason I started looking into this is that I'm starting to have trouble with Yasko's supplements.  The GABA induces heavy somnolence for about 24 hours.  Both SamE and 5HTP cause serious problems with the dopamine/serotonin balance resulting in either serotonin syndrome or an attack of restless leg syndrome which interrupt my sleep and which I don't normally suffer from.  I've had to back off Yasko's full protocol and even reduce the dosing of the shortcut protocol.  

So I need a new plan.  I would love to get rid of some of the pills I take.  I can't keep up with them all.  I have so many that I often don't take about 2/3rds of them.  I need a better plan that I can keep up with.  So:
  1. Review supplements needed for CFS/ME/SEID (I have some new info regarding microglia that I need to look into further)
  2. Review supplements for MTHFR and stick to the minimum
  3. Consider adding Equalibriant back into the rotation

Friday, February 13, 2015

Enduring vs Thriving

There is a vast and sometimes what feels like an insurmountable difference between the two.  According to Google:


en·dure
  1. 1.
    suffer (something painful or difficult) patiently.
    "it seemed impossible that anyone could endure such pain"
  2. 2.
    remain in existence; last.
    "these cities have endured through time"
thrive
    1.  (of a child, animal, or plant) grow or develop well or vigorously.          "the new baby thrived"    2.  prosper; flourish.         "education groups thrive on organization"

As a chronic chick, I definitely endure daily the slings and arrows of my illness.  So far I still "remain in existence" and often "suffer patiently".  However, on my better days I also thrive.  I flourish and prosper and grow and develop.  I guess it is a matter of perspective and a new definition of success.  

I am so glad I studied Buddhism under a nun for several years prior to becoming ill.  I think it has been my bridge between just enduring and actually thriving as a chronic chick.   In Buddhism it is believed that the basis for all suffering is grasping/wanting.  As a Buddhist, I try not to grasp at things.  It can be something as simple as wanting a new bathing suit that I can't afford and won't use anyway to desperately wanting to get better.  I constantly remind myself that all things change and all things are impermanent.  All of my things will be gone in years, decades or centuries hence.  All turned to dust.  And I am just as impermanent as my things.  My body will leave this earth at some point and will become dust.  While my body feeds the worms my spirit will be reincarnated into another body and my lessons will continue.  


I think this is why I can thrive as a chronic chick.  I'm not dependant upon my body working for me to prosper and flourish.  Instead of trying to accumulate wealth/status/influence, I'm happy to feel wind in my hair and sun on my face.  Hey I managed to toddle out onto my deck today to enjoy the sunshine!  To bask in the glory of nature!  Hey I managed to answer someone's question on Facebook who is also struggling with chronic illness.  Now they are happy since they know they aren't alone and they have someone else they can add to their support team.  My definitions of success are making someone else happy, lightening someone else's burden, managing to get out into nature, enjoying sun and wind and rain and snow, noticing and taking pleasure in the minutia of life, learning the names of bugs and plants and trees, managing to read a science paper, learning something new.


Without my Buddhist perspective, I would more than likely be stuck enduring this illness but instead I find that I'm often thriving despite it.  I see it all the time on blogs "I am not my illness".  I think this is what is meant by that.  Once you stop grasping at the life that you once had or grasping for a fully functioning body, you can thrive instead of endure chronic illness. I consider my body a blessing, even if it is broken.  We are lucky to be born into this world and wander this earth for a short time before reuniting with the stardust once again.


White Tara
Female Buddha of Healing

Thursday, February 12, 2015

The Eyes Have It

One of the ways my husband can tell I'm crashing, often before I know myself, is by looking at my eyes.  I start losing my ability to track properly.  My eyes start darting around more than usual.  Of course, I also have the other eye symptoms related to ME/CFS/SEID such as dry eyes, blurred vision and the light sensitivity.  They all get worse as my functioning declines.  Due to my annual midwinter crash, I've had blurred vision for about two weeks now with some days it getting so bad that I can't read even magnified text.

Anywho....
Here are two different types of studies that recently made the news; one that is looking at eye problems in ME/CFS/SEID patients in particular and the other on a new type of eye tracking test that I would LOVE to see used on us.

Eye health could help diagnose people with chronic fatigue syndrome

Wednesday, February 11, 2015

Potato Pohtahto

The IOM released its findings on ME/CFS today.  They suggested a name change, Systemic Exertion Intolerance Disease or SEID for short.  My first reaction was scorn "Oh great another cruddy name for this illness" but it is growing on me.  I read the slides that were used in the meeting this morning and they are pretty interesting.  NBC totally botched their report on it but that is another rant for another day.

While I strongly believe that their is brain inflammation involved in SEID, there isn't enough solid evidence to use the ME name.  I guess not enough of us suffer from pain either.  I know in my case while the pain was intense it only lasted about a year during my worst time.  I was doing pretty well until I got floxed. 

There is a simplified diagnostic criteria for my illness which is based on actual scientific evidence so it can't be argued with like the other definitions.  I'm kind of bummed that the CCC and the IC for ME are both gone but they were based on clinical experience rather than solid science studies.  

I'm hoping that this will now start to move things in the right direction: more money for research, better controls on study cohorts, more widespread acceptance, more doctor training.  They are going to be releasing a physician's guide for diagnosing and treating patients so that will be fun reading.  I'm actually looking forward to it now.  I'm very curious what they will list for treatments.  I can't wait to take it to my doc. 

As long as people don't interpret "exertion intolerance" to mean lazy, I might be okay with the new name.  At least the name got switched from syndrome to disease.  I guess I'm now officially sick.

Here are the slides from the IOM meeting:

Saturday, February 7, 2015

Ataxia

As I have already mentioned, Dr Komaroff my consulting CFS/ME doctor retired last year and my treating CFS/ME left the state.  In my search for a new doctor I was on the Mass CFIDS site and ran into a great page on the new SSD requirements for proof of disability with a CFS/ME diagnosis.  Under the list of things to monitor was 'ataxia'.  I had never heard of this so after consulting Dr. Google I ended up on the National Ataxia Foundation website and EUREKA!!  There was a list of my neuro symptoms!  All of them! With a few extras I had no idea were related!

  • Balance and coordination are affected first
  • Incoordination of hands, arms, and legs
  • Slurring of speech
  • Wide-based gait
  • Difficulty with writing and eating
  • Slow eye movements
The is also overactive bladder, crying jags, heart issues and low blood pressure.  All of which happen to me.

Woohoo!  I have a name!  Even more exciting I discovered that the top Ataxia Unit is near me at Mass General Hospital!  The head of the department is THE Ataxia guy in the US.  They have treatments for the neuro crap I've been dealing with for four years now and they specialize in the treatment of diseases of the brain.  I am SO excited!  I just printed out the referral forms and health history forms.  I also printed out the Stanford study that shows brain inflammation is part of CFS/ME Now I just hope that it won't be a six month wait to get in there.




Thursday, February 5, 2015

In Mourning

I'm coming up on my fifth anniversary and starting to dread the fact that I might not get any better.  Progress has been so slow and everything sets me back.  It doesn't help that February is always my worst month of the year and we've been having horrendous storms that have robbed me of what little energy I have.

What has also upset me is two deaths in the patient community.  One from heart complications due to the illness.  I don't know the specifics of the second one.  I've been reading posts all day in memoriam.  Other patients are crying.

For unrelated reasons (mostly being angry at my siblings) I'm in the middle of rewriting my will and adjusting my benefactors for insurance and various accounts.  However, this got me thinking that what I once thought would be a very long life might get cut short by this illness.  With the deaths today this has hit home particularly hard.

There is a Buddhist practice where you have to sit and meditate on death.  This is supposed to aid in the realization of impermanence, that life is fleeting and all things change constantly.

Right now I'm just very sad.  There is a good possibility that this illness might just kill me.  It is not what I wanted nor what I expected out of this life.  Not only do I mourn the loss of my fellow patients but also, truthfully, the loss of my own vibrant existence.  I'm now a slave to a body that doesn't work very well.  I'm at the mercy of its fickle ways.  Today I have no hope.

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.