Thursday, September 30, 2010

Mental Puzzles

As I alluded to in earlier posts I had a physical and mental set back last week.  I'm doing much better now but am left with a puzzle:  was I actually depressed or was it due to a vitamin B6 deficit? 

I had a great week three weeks ago.  I had lots of energy, managed to clean my house a little, cook a few dinners and even attend a wedding.  I was starting to make plans.  Maybe I would get to go skating!  Maybe I would be able to have company over!  Maybe I would be able to start exercising!  Oh the joy!! 

When my husband threw a ginormous hissy fit while I was doing so well, he upset the proverbial apple cart and I very quickly spiraled downwards.  But instead of leveling out at my "normal" bad day, I kept going down and spent several days moping around the bottom of the depression well.  After agreeing with my chiropractor and doctor that I needed to start seeing someone for therapy, on some whim I decided to take my vitamins.

Now I hate taking pills so I had stopped taking them.  My chiropractor put me on a regime that is used for FM and since we both believe FM is just the other end of the pain scale of CFS maybe the same regimen would work for me.  This means I have to take 16 pills a day plus a liquid multivit.  Did I mention I hate taking pills??  I tried it for a few weeks and didn't think it was doing any good plus I had a sore throat flare so I stopped and never started up again.

For some reason  (sometimes my intuition saves my butt) I started taking some of them again.  This included a huge dose of B6.  I did this two days in a row.  Now I feel normal again.  Well, CFS normal.  The depression is gone as if I never had it.

I learned about B6 many years ago from my old shrink.  We noticed that I had a bad depressive swing the day before I got my period.  She told me to take 50mg of B6 to help regulate my hormonal system and it worked!  I was shocked.  No more crying, weeping and beating myself up the day before my period!  This is awesome!  Of course, NIH doesn't believe me and says that a sugar pill would have the same effect and as much as I love Ben & Jerry's, ice cream doesn't quite do the trick.  Trust me I've tried.

Now I know the little buggers that have taken over my body are experimenting with my systems: there are huge problems with my power distribution grid, heat and vent sporadically goes on the fritz, and someone keeps leaving the lights on making it hard to sleep.  So why wouldn't they be dicking around with my hormonal system?? 

I am guessing that it was some combination of too much excitement, husband's hissy fit, actual depressive episode and a hormonal system hiccup that caused the physical and mental crash.  I got over the physical part by spending the last week and a half either in bed or on the couch.  The mental recovery was some combination of crying a lot, letting myself feel bad (yes that is actually good for you), getting angry at CFS and all the s*&^ that it has caused, fessing up to two of my doctors that I needed help, and my old friend B6.

More info on B6:
http://en.wikipedia.org/wiki/Vitamin_B6
http://ods.od.nih.gov/factsheets/vitaminb6.asp
http://news.bbc.co.uk/2/hi/health/349077.stm

WARNING: taking too much B6 will lead to toxicity and potential nerve problems (see above NIH link).  The daily upper limit is 100mg/day.  I never take more than 50mg/day and I only do this sporadically.  My normal dose is 25mg/day.  The RDA is 1.3mg/day for women 19-50 yrs old.

Wednesday, September 29, 2010

Cool Stuff from the Blogsphere

Just found this blogger today.  I love her description of chronic illness and can totally relate:
http://dearthyroid.org/chronic-snarkopolist-the-tidal-wave/
I also adore the 50's style pictures on the site.  Since this is a multi blogger site if you click on her name you can get a list of her other posts.  I've got a lot of reading to do :-)

Here is some great info on drug therapies, flu shots and XMRV tests from Sue over at Learning to Live with CFS:
http://livewithcfs.blogspot.com/2010/09/visit-with-infectious-disease-doctor.html

And this from Phoenix Rising:
http://www.forums.aboutmecfs.org/content.php?233-Chronic-Fatigue-Sydrome-10-Things-People-Misunderstand-About-This-quot-Fatigue-quot

Another Alternate Universe Doctor's Visit

The only explanation for this is alternate reality.  One where the use of normal logic and brain cells doesn't exist.

I went to for my annual ob/gyn exam today.  Nothing has changed: I have the same address, same insurance (but new card #), same policy, same primary care doc, same employer, same phone number, etc.  I have been seeing this doctor for almost ten years so I'm not new to the office. 

Okay, so I go up to the window to check in:
receptionist: "Do you live at ## X Street?"
Me: yes
R: Your phone number is ###-###-####?
M: yes
R: Your insurance is blah?
M: yes
R: You work at blah blah?
M: yes
R: Your work phone number is ###-###-####?
M: yes
etc
She is checking all this stuff on her computer monitor and I confirm that everything is the same.  They take my insurance card because for some reason that makes sense to corporate health care the number had to be changed on my card even though the plan hasn't changed a bit.  I guess it keeps some manager's kid employed at insurance headquarters.  The receptionist hands me a pile of forms to fill out.  Apparently they make the patients fill out the lab work forms so they don't have to do them.  However she doesn't mark which boxes I'm supposed to fill out of the thousand on the form.  I manage to pick out name, address, phone and insurance info (which I can't fill out since she has my card) out of the plethora of lines and boxes and I dutifully fill them in.  The next form is a fill-in-the-blank for their office and guess what?  It is the same 20 questions that I just answered at the window.  The same 20 answers that are in their computer system.  The same form I filled out the last time I was here a year ago with the same 20 answers.  I leave half of them blank and use as many abbreviations as possible.  This is STUPID.  It probably gets filed away and no one ever reads the thing anyway. 

She calls me up to the window because they are having trouble with my insurance card.  I don't know who did what but the 20 questions start again: "who is your primary doctor?" (uh did this change since five minutes ago?) , "who is your insurance company?" (like duh I can see my card in your hand from here!  Who do you think it is??).  "Well the computer says you have Amica." (and of course the computer is right??  right??).  "That is my auto insurance," I tell her.  (why in hell does my ob/gyn have my auto insurance in their system?) "But the computer won't let me put in your health insurance number."  (and this is my problem how??  I can't fix this for you.)  "Do you see any other doctors in blah practice?" "No just my primary," I answer.  They look utterly stumped.  I get the deer in the headlights stare from the insurance lady.  (Sorry I really can't fix this for you or even attempt to figure out what you guys did to mess up your database.  I'm smart but not that smart particularly since I am on the other side of the window and not at your work station.  If you gave me an hour I could probably hack your system and fix it for you but I don't think you'll let me do that.)  "We'll have to figure this out."  (ah yeah I'll just go over here, sit down and read my book) 

The receptionist calls me back to the window.  "You have to fill in you DOB on the labwork form and your insurance number and fill in the emergency contact information and insurance information on the office form."  (Your kidding right?  Are your fingers broken?  Does your brain not work?  Do you expect me to drop dead in your office so you will need to call my spouse?  Why am I being punished for not filling out your anal forms correctly?  All this already exists on file since I filled this form out the last ten times I've been here, it is also in your computer system and NONE OF IT HAS CHANGED!!  WTF!?!)  Can you tell I'm starting to loose my patience here?  Then the insurance lady calls from the other work station "Don't worry we figured out the problem with your insurance card!"  She was so happy.  I just mumbled "I wasn't worried."  (which I truly wasn't, after all it isn't my problem anyway so why should I worry?)  I kind of busted her bubble.  Ah my geeky introverted self bursts forth and does something socially inappropriate.  Of course a good deal of my lack of patience has to do with the sheer number of doctor appointments I've had to go to this year, the reams of paperwork I've had to fill out and the fact that the people putting the data into the computers will fight you to the death that the computer is right and the patient is wrong.

I go back to my seat after three rounds of 20 questions and two rounds of anal form filling.  Now, I am the ONLY one in the waiting area.  I've been the only one here since arriving 15 minutes ago.  The nurse comes out and asks me if my name is blah? (You have GOT to be kidding me!  I know they like double checking and such but can't you be a bit more subtle than that? ARGH!) 

The rest of the appointment slipped back into real space.  I was no longer asked what my name, phone number, insurance company etc was.  However, I was now crashing and had a headache and was worried about how in hell I was going to drive myself home as my brain fog started to ooze back in.  Sometimes I swear doctors' offices exist in an alternate reality.

Tuesday, September 28, 2010

Craft Therapy

A great post regarding arts and crafts as therapy:
http://iheartartpdx.com/2010/08/23/the-healing-arts-and-crafts/

Assistive Technology

I've had problems in the past with my wrists from keyboard overuse.  I was doing a science project that required a huge amount of data entry.  I spent days typing on the numeric keypad doing the same keystrokes over and over until my body quit on me.  After seeing a specialist I got an ergonomic desk, chair, split keyboard and a mousepen.  And, I found this excellent company to purchase all sorts of assistive tech from Office Organix.  Now that I have muscle and joint problems I'm going to be outfitting my home computer with some of this tech.  It will make surfing and blogging much more comfortable.

Here is the split keyboard.  It is split down the center and is hinged on a ball joint at the top.  You set it up as a tent so your wrist are in a more natural and less fatiguing position.  Yes it looks weird but once you get used to it, it is a pleasure to type on:

Here is the mousepen:

http://www.wacom.com/bamboo/pen_input.php

This is more advanced than the model I purchased for office use over five years ago.  The one I use is just a pen input device and doesn't have the more modern touch capability.

The problem I'm currently having is with TV remotes.  The newer ones require a lot of pressure to activate the buttons.  This makes my already sore joints even worse.  When I find a light touch remote I'll let you know.

BTW, if you are still working you can ask for assistive technology and the company has to provide it if you are having health issues.  See: http://www.eeoc.gov/eeoc/publications/adahandbook.cfm

Slipping and Sliding

I knew it would only be a matter of time; depression is slowly setting in.  I did awesome for so long considering my history of depression.  Things are weird for me.  My husband isn't coping with the changes in the house or me very well.  He hates having to take care of dinner and virtually throws a daily hissy fit when he has to deal with it.  Now that I've crashed for the last week from a combination of regular illness fatigue and depression fatigue I haven't been able to cook at all.  I don't think I've cooked for ten days now and we've been on a steady diet of take out.  Hubby doesn't cook.  I'm beginning to think I need to teach the kid.  He is certainly old enough to learn.

The battle against the depression this time has been odd.  This is the first time I've had an excellent acupuncturist taking care of me during a depressive bout.  We haven't quite figured out the protocol (number of needles where thing) yet.  The first session worked well and my good mood lasted several days.  The second session he pushed it and put in lots of needles to the point I was nauseous and he had to take some out.  The result was just short of a manic episode.  I felt great and stayed up all night.  Then when I finally came down I slept for 12 hours and then couldn't get off the couch for an additional 9 hours.  I eventually managed to get up and around and the depression crept back in.  I just finished session 3.  I've got a slight headache and it is 2am and I'm still up.  I'm feeling tired though which is a good sign.  I might get a decent nights sleep. He didn't use nearly as many needles this time.  I'm hoping for a good couple of days ahead. 

I see my regular doc tomorrow for my monthly check in.  We'll see what he says about things.  I wouldn't be surprised if I end up in talk therapy again.  Since I am in totally new territory I'm not adverse to the idea.

Saturday, September 25, 2010

To Hades and Back Again




Hades
   


Cerberus
  I'm standing on the edge of the abyss.  I can see the path to the underworld from here if not the actual gates of hell.  It is a hazardous path since it is covered in scree.  It is very easy to slip down and very very difficult to climb back up.  I've slipped a few times this week.  I slid quite far down the path.  I could hear the agonized howls of Cerebus.  He actually snapped at my heels once.  But I've managed to scramble back up into the light.  I am once again standing on the edge of the abyss looking down.  With some help I might be able to walk away altogether.

Wednesday, September 22, 2010

Extra Extra

New serology tests are available to test for XMRV and varients.  The kit itself only costs $65 but there is no word yet about the tests costs.

http://www.fightingfatigue.org/?p=8629&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+fightingfatigue%2FuZPJ+%28Fighting+Fatigue%29

In other words I can go to my doctor and get tested for XMRV whether my insurance will pay for it or not.  Now, what to do with the information once I get the test results back is another matter all together.

In the News

Just doing some on line reading and ran across a couple of  interesting articles.

From Phoenix Rising is an excellent article on balance and CFIDS
http://www.forums.aboutmecfs.org/content.php?231-Lost-in-the-World-the-Romberg-Stance-and-ME-CFS

From Science Digest is a short article on Gluten Ataxia
http://www.sciencedaily.com/releases/2002/04/020424073708.htm
I found this particularly interesting since my worst symptoms when I used to eat wheat were neurological symptoms.  I did have some digestive issues but the worst stuff was the brain fog and extreme fatigue (nothing like CFS but bad none the less).  If I was presently eating wheat while dealing with CFS I would be bed ridden instead of housebound.  Being wheat free has made a huge difference in my life.

There was also this article on Tai Chi on Phoenix Rising but it address non CFS/FM type illnesses.
http://www.forums.aboutmecfs.org/content.php?232-Tai-Meditation-in-Motion-by-Jody-Smith  I am interested in doing Tai Chi and it will probably be the first form of exercise that I take up when I am more mobile again.  However since I'm 80% housebound right now with about 4 hours of functional time a day adding Tai Chi is not currently a viable option for me.  That said I did find this web site: http://www.5min.com/Video/How-to-do-Seated-Tai-Chi-Routine-32271715  She goes a bit too fast for my taste and there is no instruction with it but it is a good start for a seated routine.

This one made it on to The White House Chronicles.
http://whchronicle.com/2010/09/the-awful-disease-washington-forgot/
Maybe we will become visible after all.

CFIDS Atlantis Style


http://upload.wikimedia.org/wikipedia/en/d/dc/Stargate_Atlantis_intro.jpg

Okay, maybe I've been watching a little too much Stargate Atlantis recently.  I'm already half way through season three and I've been at it less than a week but I did crash hard yesterday so I've been a couch sloth for two days.  That is my excuse and I'm sticking to it.

I've decided that rather than House I would like Dr Beckett to be my personal physician.  After all not only did he design a retrovirus that turned Wraith into humans, he also figured out how to kill nanites.  He has way cooler toys than House and he is way cuter.  Well, they both do have gorgeous blue eyes but I prefer the Scottish accent and pleasant bedside manner.  Given the complexity of the little buggers that have invaded and are currently holding my body hostage I think Dr. Beckett has a better chance of solving this puzzle than House and he's not nearly as grumpy.  Maybe they can use the Asgard transporter to separate the bugs from my body and hence cure me.  They safely removed the Goa'uld from Col. Caldwell that way.  That would be cool.  Instant and painless and I get a free trip onto a deep space carrier to boot.  Now if I could only find that Stargate.  It must be around here somewhere.....

Monday, September 20, 2010

Who Turned Out the Lights?: Blog Carnival #2

Just wanted to let everyone know that September is also Suicide Prevention month.  I wrote The Long and Winding Road for a blog carnival at Graceful Agony.  The carnival was posted today so if you are interested in reading others' journeys with depression please head over to her blog.

Quote of the Day


Where can I get one of these Tshirts??

Are You Better Yet?

So goes the eternal cry of the cranky husband.  He is trying to be funny, but not really.  He is trying to be cute, but not really.  I haven't quite figured out what it is code for.  When he says it though, it just irritates the hell out of me. 

I spent Friday getting ready to attend a wedding.  I was very fortunate that this week was one of my good ones.  Friday I caught up on shaving off extraneous body hair that I have come to neglect since I rarely go out in public anymore.  I tried on different outfits since I've gained weight and that gorgeous new white dress with huge red flowers on it that I bought this spring has no chance in hell of fitting anymore.  I laid out the third outfit that I tried on.  I dug my dress shoes out of the back of the closet, dusted them off and put those out.  Saturday I slept as much as I could.  Ate.  Showered.  Threw on my clothes and then it started.  Husband wanted to take the loud fancy '55 Bel Aire that he so lovingly restored to race track condition.  He loves driving this car.  I hate riding in it.  I knew I was pushing my luck attending this wedding in the first place and here he wanted me to ride in a loud uncomfortable car for two hours.  Napping in this car is NOT an option.  He got really angry that we had to take the VW diesel.  I think I managed to nod off during the trip there despite the angry waves oozing off my husband in the driver's seat.

I did tremendously well.  I was out of the house for 9 hours total.  This is the longest I've been out since I became ill back in May.  I sat the entire time.  I got the shakes at one point but I just sat still and tried not spill coffee on myself.  I kept quiet.  I watched everyone and listened to them talk.  My husband spent over an hour talking with someone he knew but hadn't seen in months.  I sat there quiet.  I felt abandoned.  His back was turned to me the entire time.  I watched the couples on either side of me talking to each other.  Paying attention to each other.  I looked at my husband's back and wondered how we were going to weather my illness as a couple.

But I was out of the house.  I could see Mt Monadnock from my seat at the dinner table.  I couldn't dance but I got to eat really good food.  I spoke a little bit to the groom and the groom's mother.  It was nice.

Of course I crashed today.  But I managed to clean the kitchen island first.  I mean scrub it down and wash everything.  A good thorough going over which hadn't been done for weeks.  After laying down for an hour I went out to dinner with hubby.  He was excited that it was cheddar broccoli soup day at the Cheesecake Factory.  We talked a little.  I brought up the fact that he was so angry.  Just my acknowledging it seemed to mollify him a little.  He started to talk some more.  I brought up the fact that I felt abandoned and it was like I just asked him to pull out a tooth and hand it to me.  He feels like he is being put upon.  He has to do everything.  And he does.  I don't deny this.  However, I don't have the energy left in me to debate my abandonment comment or even to explain things or have them make sense to myself never mind him.  I change the subject.  Brain fog is starting to set in.

So we get home and I am completely spent.  He notices my shuffling gait as I walk towards the house.  I no longer have the energy to pick my feet up as I walk.  I collapse on the couch to watch hours upon hours of Stargate.  He is playing kill the zombies on the Xbox in another room.  I'm freezing cold and covered in blankets.  He does some laundry.  My only movement is to advance Netflix to the next episode.  Then the kid calls for a ride and now hubby is in full cranky pants mode.  He is angry that he has to do everything.  That I can't pick up the kid.  That I am broken.  That I can't help him.  The clean kitchen and dinner has already been forgotten.  He always gets like this when I am too tired to do anything about it.  I am too tired to do anything but give him a blank stare.  I feel hurt.  I did my best.  I did better this weekend than I have in months but it is not enough to mollify him.  He has his cranky pants on again.  All I can do is ignore him.  I don't have the energy to cope.  I feel like my husband has morphed into a two year old child who is now throwing a tantrum in the middle of the living room.  All I can do is stare at him.  I'm just too tired to dance this dance.  He leaves and I go back to watching TV.  Too tired to even think about him.

I worry about us.  I can barely take care of myself and I certainly can't fix him.  He seems to want me to do something.  I don't know what.  I did my best this weekend.  I went to the wedding.  He wanted my company there.  I cleaned up the house a little and even offered to make dinner.  But all I know is that what I did do, what I can do is not enough.  This makes me sad.  And I worry about us.

Sunday, September 19, 2010

Sunday Reflections

http://www.jpl.nasa.gov/gallery/images/PIA11066_modest.jpg


"Look again at that dot.  That's here.  That's home.  That's us.  On it everyone you love, everyone you know, everyone you ever heard of, every human being who ever was, lived out their lives.  The aggregate of our joy and suffering, thousands of confident religions, ideologies, and economic doctrines, every hunter and forager, every hero and coward, every creator and destroyer of civilization, every king and peasant, every young couple in love, every mother and father, hopeful child, inventor and explorer, every teacher of morals, every corrupt politician, every 'superstar', every 'supreme leader', every saint and sinner in the history of our species lived there - on a mote of dust suspended in a sunbeam."  -Carl Sagan

Saturday, September 18, 2010

National Sewing Month

September is a busy busy month.  There are 29 health related awareness days or weeks listed for 2010.  The only month that appears to be busier was May although I didn't actually count.  I have already posted for Suicide/Depression, Celiac and Invisible Illness so here is something a bit more light hearted: National Sewing Month.

Prior to becoming Ill I used to sew a lot.  It is one of those things that I'm good at but not overwhelmingly fond of.  I learned to sew from my Mum when I was little.  I sewed my first dress for my doll when I was about 6 from fabric scraps from my Mum sewing a dress for me.  My doll and I ended up with not quite matching dresses.  By the time I was in my teens, I was sewing entire outfits and when I hit college I started designing medieval costumes without patterns.   After college, I didn't sew for about 20 years.  I took it up again a couple of years ago as a result of skating. 

After a 30+ year hiatus from formal figure skating lessons I started taking classes again.  After a while I decided to start testing and competing.  Now I am not young and I am not skinny.  All skating outfits are designed for 13 year old girls.  Even if I scaled the patterns up they still wouldn't look right so I bought myself a serger and learned how to sew knits.  I've also been designing my own patterns either from existing dresses or from pattern pieces cobbled together from different dress patterns.   I've made four skating outfits and a skirt.  The one I made for a friend came out the best.

What I find most disturbing since I've returned to sewing is the loss of information.  It seems to be a dying art.  It is amazingly hard to find fabrics, notions and sewing machine accessories.  The large fabric stores have had to resort to including crafts of all sorts to keep themselves viable.  While I understand this, I wonder why no one sews anymore?  Why is this becoming a lost art?  So lets celebrate sewing during National Sewing Month and hopefully it will see a revival like knitting has.

Friday, September 17, 2010

Sick Humor

I just found this on Hyperbole and a Half blog and I LOVE it.  Here is my favorite bit




0: Hi. I am not experiencing any pain at all. I don't know why I'm even here.
1: I am completely unsure whether I am experiencing pain or itching or maybe I just have a bad taste in my mouth.
2: I probably just need a Band Aid.
3: This is distressing. I don't want this to be happening to me at all.
4: My pain is not fucking around.
5: Why is this happening to me??
6: Ow. Okay, my pain is super legit now.
7: I see Jesus coming for me and I'm scared.
8: I am experiencing a disturbing amount of pain. I might actually be dying. Please help.
9: I am almost definitely dying.
10: I am actively being mauled by a bear.
11: Blood is going to explode out of my face at any moment.
Too Serious For Numbers: You probably have ebola. It appears that you may also be suffering from Stigmata and/or pinkeye.
 
For the entire post http://hyperboleandahalf.blogspot.com/2010/02/boyfriend-doesnt-have-ebola-probably.html  which is quite funny.  I think this is my new favorite humor blog.

Thursday, September 16, 2010

What? Me Worry?

Should you worry when the nurse that is drawing your blood has something like this hanging off her id badge??  BTW, I asked her if she ever stuck needles in it and she said yes.  She also calls him a different name every day.



Image scarfed from http://www.etsy.com/listing/54501239/black-voodoo-doll-stitched-scary-face

Wednesday, September 15, 2010

I AM Worthy

This post is going to be a bit rambling.  I'm still pretty fried from My Big Day in Boston.  I was so nervous last night I couldn't sleep even though I was tired.  I think I got about four hours total so I was already cooked when I arrived at Tufts Medical.  I made hubby follow me around.  This is the first time ever I have needed him at a medical appointment. Usually I am very self sufficient.  Hubby came in very handy.  He read over my papers that I had to fill out.  He remembered stuff I had forgotten.  And generally kept me from having a massive crying jag in the middle of the waiting room.  I was scared they would think I was dumb.  I was scared they wouldn't take me seriously.  I was scared they would think I was lazy/faking.  And OMG I was so very very tired.  I couldn't think straight and needed help walking.

I had my initial interview with a fellow (that is someone who has done their residency and is now studying under a specialist but who isn't a full doctor yet).  After a long interview regarding my history, family history, blood tests and not so much with my current symptoms she disappeared saying she was going to discuss this with The Specialist and would be back in a minute.  I could tell she was tired herself in the normal sort of way.  I kept seeing a thought bubble over her head that said "if you think you're tired you should try being a doctor for a while...." each time she looked at me.

Apparently I was "interesting".  Not only did she show up with The Specialist but he also had another student in tow.  I was worthy of lots of attention.  I had weird symptoms that they couldn't immediately figure out.  (I had the fore thought to type up a symptom list the night before which I had given her with my packet of papers from the doctor.  This was a good thing since she did a bad job of getting a list of my current symptoms.)  I was a medical puzzle.  He went over my history again and it was cool.  He really listened to me.  Made lots of eye contact.  Asked me lots of questions.  Examined me again.  He then rattled off a long list of blood tests he wanted done based on my symptom list, the fact that I have cats and the fact that I traveled to NM the month before falling ill.  I asked him about testing for XMRV.  He smiled and immediately asked the students if they knew what that is.  He then told me not yet.  He wants to try this other stuff first and doesn't want to jump to the conclusion that I have CFS yet.  He said if we get to the point of testing for XMRV he has a colleague at Mass General that is looking for study patients.  That would be cool if I could help the docs understand this better.  I could then contribute to finding a cure.  I've been trying to keep good records of symptoms and the like.  Mostly because my memory has been so bad but it is helping document the course of the illness. 

After waiting some more the nurse came and fetched me and drew 8 vials of blood and then filled a syringe as well.  She then injected my blood into two bottles of liquid which are going to be baked for one to two days.  They then take the guck that grows in them and spread it out on a petri dish and let it grow some more.  When they look under the microscope they will be able to see what is living in my blood and if they are aerobic bugs or anaerobic bugs.  The later being the nastier of the two.

I'm excited.  I have to wait a month before I can see them again.  The docs wanted me back in two weeks but the first available appointment is a month out.  The next one is at 8:30am so I will be toasted again.  But, I'm making progress.  I'm very happy with the way things went.

The Long and Winding Road

I warn you. This is going to be a long post. I am also nervous about this. This will be the first time discussing my depression in public. Not even some members of my family know that I've been battling this on and off most of my life and none of them know the gory details.

Why is this? I am old enough (almost 50) to remember when dealing with mental illness wasn't cool. You were frowned down upon, less than, defective, irreparable. Of course this was prior to the politically correct age and the plethora of antidepressants that are available now. Back then depression was seen as a personal defect that you should be able to pull out of if you just put some effort into it.  If you couldn't you should be locked up. They didn't yet know that it was due to a chemical imbalance in the brain.

My lack of forthcoming is also a result of being English. My Mum was raised by a Victorian era grandma. You don't talk about it: keep a stiff upper lip: get on with it, kind of people. This was passed on to me. Unfortunately there seems to be a genetic predisposition to depression that runs in my family. I've seen evidence of it in my Mom (sorry to out you), me, my sister and even my son. I don't know about my other sibling. We aren't close enough with each other to discuss such things. It's just not the done thing.

So when did this family secret first raise its ugly head? I was actually a very happy kid. I even adjusted well when my family emigrated to the US from England in 1968. However, when puberty hit so did the depression. It was like a switch being thrown. Apparently when my brain got rewired it had a few bad spots woven in. (MRIs show that the adolescent brain is physically rewired during puberty. The prefrontal cortex catching the brunt of this reconstruction. It also explains why teenagers do the weirdest stuff.) I had my first bout with clinical depression somewhere around the age of 14. I really should have seen someone since I was borderline suicidal at the time but back then depression was kept hidden. I managed to pull out of this myself by deciding one day that I didn't want to live like that anymore. I started to do things just to get me out of the house. Stupid things like going to the grocery store; being English we used to shop every day. But it worked to a degree. I became functional again and was no longer suicidal.

Since that first bout of depression I was what used to be called melancholy, a low grade depression. I was angry all the time. I had obsessive thought patterns. I was sullen and quiet. I made few friends and kept to myself. My bouts with full blown clinical depression seem to occur at major changes in my life, getting married, moving across state,going away to college, coming home from college, becoming a mom, etc.

The bouts I had around college were mostly ignored. I did try several different talk groups on campus none of which were helpful. I healed more by leaving behind my dysfunctional group of "friends" and joining a new group of highly functional friends in a new dorm. These are people I am still friends with today. I haven't heard anything from anyone in the dysfunctional group.

The bout of depression I had after I got married was the first successful professional treatment and the most successful drug treatment I had. I did a round of talk therapy with an excellent councilor who put me on Prozac which I did very well on.

The next bout I had occurred after I moved across the state. That one wasn't dealt with very well. I had a different therapist who wasn't very good at talk therapy and they never gave me Prozac. Again I pulled myself out of it enough to function normally again and the HMO I was in declared I was "cured".

The bout I had after my son was born had to be dealt with through talk therapy since I was nursing at the time. I didn't make the adjustment to motherhood easily and I still get pangs of jealousy when I hear about parents swooning over their new baby. I hated being a new mother. This time I had a very good therapist and we decided together not to pursue drugs.

Then, in 2001, my world fell apart. I had a HUGE problem with my marriage, I became the target of sex discrimination at work, there was a major fall out in my husband's family and a minor rift formed in my own family. If I had to deal with any single event I might have been okay but this was the perfect storm. Every support system that I had failed within months of each other and I fell to pieces. I still had my great therapist but she couldn't prescribe drugs so she sent me to a psychiatrist and the medication nightmare began. He must have been on the receiving end of kickbacks from the drug companies. I told him I did well on Prozac but he insisted on trying me on the new meds first. I was too messed up at the time to refuse. I cycled though each new drug having one adverse reaction after another; thoughts of suicide, loosing time, no muscle strength, staring off into space for hours, hearing voices, thoughts of killing others. After a half dozen different drugs I said enough. I was done. I didn't care if I was depressed it was better than being parked on my deck wrapped in a blanket for hours on end while I drifted off to nowhere. I spent the next several years in talk therapy. My husband and I patched things up. My work situation changed and I slowly became functional again.

Now, between my terrific husband and wonderful therapist I managed to get out of my chronic melancholy and perpetual anger but I still suffered from obsessive thoughts. My real breakthrough came when I started practicing Buddhism with a nun. I learned meditation. I learned Buddhist philosophy. I attended weekly classes and special seminars. I participated in a healing ceremony and became part of the tiny Buddhist community in my town. All in all I did a steady practice for about three years. During this time my thought patterns changed. My obsessive thoughts stopped. The melancholy went away completely and I was happy most of the time. During this period my therapist and I decided that I no longer needed her services and I haven't gone back since. There is now MRI evidence that the brain gets rewired in a person that practices meditation. There are several studies that have been done on Buddhist monks specifically. Luckily the Dali Lama is very curious about science and has volunteered his monks for all sorts of brain studies. I don't know if the results are the same with people who practice other forms of meditation or prayer but I suspect that there are detectable changes in brain wiring.

Now I am facing another major change in my life and I am on the lookout for the symptoms of depression. Both my husband and I know that it often shows up in chronically ill people. It makes sense. Your life has totally changed. You can't be the person you were. You have to reinvent yourself. At least now I know what to look for and I know enough to call my cool therapist as soon as I start to get into trouble. But so far I doing fine considering. I'm five months into my illness and I'm generally still pretty happy. I get cranky on bad days but I figure hey I'm allowed. I've been reading about treating serious illness as the "dark night of the soul" and using the illness as a soul journey. I enjoy putting a philosophical framework around my illness. I have been toying with various definitions of success and happiness. I have been thinking about the cultural norms that are imposed on us and the roles society imposes on us that we willingly take on. What will I become as a result of this illness? Who will I be? Instead of dreading this trip into the abyss I see it as an adventure. But I still have my spyglass in hand scanning the horizon for any warning signs of that ugly monster. So far so good. Maybe I should put my therapist's number on speed dial just in case.

Some older musings on the chronic life:
My Labels Have All Fallen Off
Why Am I Not Angry?
Secret Worlds

Tuesday, September 14, 2010

Home on the Range

Just had to share this.  It is sung to the tune of Home on the Range (of course):


Oh give me a day,

Where I don’t have to pay,

Three days for five minutes of sun,

Where my hair doesn’t fall out,

And my life’s not about,

A pill bag that weighs half a ton.



Home, home yet again,

Where most of my time I do spend,

I can’t afford fun,

One dinner out and I’m done,

Cause my fingers, I can’t even bend.



I know you don’t understand,

It’s not something I planned,

Or just how plain crappy I feel,

I may not look sick,

No this isn’t a trick,

I assure you my illness is real.



Home, home yet again,

Where most of my time I do spend,

I can’t afford fun,

One dinner out and I’m done,

Cause my fingers, I can’t even bend.



This face I put on,

Doesn’t mean pain is all gone,

It’s just so that I won’t expose,

That the snores you do make,

While I lay wide awake,

Make me want to clothespin your nose.



Home, home yet again,

Where most of my time I do spend,

I can’t afford fun,

One dinner out and I’m done,

Cause my fingers, I can’t even bend.



Now my face is all rashed,

My day is all trashed,

My knees are as big as balloons,

All my muscles just ache,

No more can I take,

Just lost a whole week’s worth of spoons.



Home, home yet again,

Where most of my time I do spend,

I can’t afford fun,

One dinner out and I’m done,

Cause my fingers, I can’t even bend.



The next time you complain,

About some random pain,

Or the annoying cold that you caught,

To walk in your shoes,

Is what I would choose,

Be thankful for what you have got.


Written by: Stephanie Kennedy

and scarfed from http://www.butyoudontlooksick.com/articles/sick-humor/sick-humor-a-spoonie-anthem/

The Big Day

Tomorrow is the Big Day. I'm going into Boston first thing in the morning to see an infectious disease specialist at Tufts Medical. Of course I don't get to see the actual doctor the first time around. No. My time isn't as valuable as his. My illness not yet worthy of his attention. I get to see one of his fellows. Even though myself and my illness have been snubbed at least I have an appointment. I have a foot in the door. I am one step closer to "the specialist".

I am actually excited about this. I got all of my medical records sent over which includes three rounds of blood work, two TB tests and a chest x-ray. (I had been exposed to pneumonia and was hoping it was that. Sigh. Fat chance.) I have my entry papers for Tufts and even a little card that I was issued when I had eye surgery done there a couple of years ago. My little piece of plastic lets me forgo the obligatory visit to the registration department where they issue little bits of plastic. Ok. Now I want to scream "the medical system is SO F*&^ed up!!!"

Patience. Patience. It has only been four and half months since first falling ill. I still don't even have a real diagnosis yet and I have insurance forms that have to be sent in soon so I can collect long term disability when my sick leave runs out. Of course the CDC doesn't help much with this. Their criterion is that I have to be sick for six months before they even call it chronic fatigue. Doesn't matter that I've exhibited post exercise malaise since day one (this is one of the hallmarks of CFS). I have to be sick for six months before I qualify for the diagnosis. Insurance forms be damned.

I have to take my shower tonight and lay out my clothes and papers. I won't be functional in the morning. I have to get up too early. Because "the specialist" is so busy I could only get a 9am appointment rather than something in the afternoon when I have a chance of being coherent. I hope they don't think I'm an idiot. I sure act like it when my brain isn't working from the CFS.

Wish me luck!

Monday, September 13, 2010

"These Aren't the Sweets You're Looking For"

These Aren't The Sweets You're Looking For
see more My Food Looks Funny

Celiac Awarness Day!


This is a busy week.  It is Invisible Illness week which I will post about later.  It is also Celiac Awareness Day.  I got diagnosed about five years ago with a wheat allergy.  I was a mess for about six months prior.  The doctor couldn't figure out what was wrong with me.  I was beyond tired.  Actually worse than I am now with CFS.  I was dizzy.  I would almost pass out.  I couldn't concentrate on conversations or driving.  My brain barely worked.  My joints ached all the time and I had horrible intestinal problems.  My doctor never figured out what was wrong and he is a gastroenterologist.  You would think he would know to check. 

It was a nutritionist I happened to be seeing at the time who figured it out.  She had me do a simple thing to test her theory: don't eat wheat for two weeks and see what happens.  Turns out this is a lot harder in the US than one would expect.  In this country wheat is put in EVERYTHING and I do mean everything.  Within the two weeks I felt almost normal. Then I forgot and ate a sub.  The plumbing problems returned instantly.  The brain fog and tiredness was back the next day.  It was confirmed: I had a wheat allergy.  I went to my doc and he did a simple blood test on me that showed that I did NOT have celiac but I had a bad reaction to wheat.  I started a GF diet and within a month was back to normal.  I was ecstatic. 

Yes, a lot of my symptoms mimic CFS.  Although from experiencing both, the symptoms do have subtle differences.  The problem with true celiac is that the symptoms stem from the damage done to the colon by the immune system.  Which means, each person will have a different symptom set depending which part of the colon gets damaged.  Most of the symptoms are from vitamin and mineral malabsorption.  Celiac itself is symptomless. 


Here are a few useful links:

I was just reading on another blog that some athletic teams are now eating GF before big races.  There is some anecdotal evidence that going GF reduces inflammation in the body.  My Mom has gone GF even though she did have full blown symptoms and she is now experiencing less bloating and fewer achy joints.

WARNING:
If you suspect that you are celiac get the blood test done FIRST.  It will only test positive while you are eating wheat.  If the blood test comes back negative then try going GF for two weeks and see if you feel better.  If you do these steps in reverse you will have to go back to eating wheat for at least a month prior to getting the blood test for it to be accurate.

Sunday, September 12, 2010

To Do List

What can you do when you can't do anything?  Interesting problem.  I've been thinking about this one for a couple of days now.  Well, really a couple of months.  I've watched all the really good instant play movies on Netflix and am beginning to run out of good SF show to watch online as well. So now what?

Stargazing
I have a really nice telescope that my dad gave me when I was a kid.  Maybe it is time to set it up in the yard again.  I can also just lay on the deck in a blanket looking upwards and watching.  It takes about a half hour for your eyes to adjust to the dark so patience is key.  Also a nice dark spot in the yard.  I have to get out of the streetlight glare.  Just a pair of good binoculars makes this fun.  Husband will often join me on this one, particularly when the space station is going overhead or comets or meteors are flying about.  This evening I saw the new moon right next to Venus.
http://stardate.org/nightsky

Painting
I haven't done any painting in a long time.  I used to be good at drawing but never got good at painting even though I like it.  Thing is I would like a place I can set my stuff up and then be able to leave it and not have to clean it up so that we have somewhere to eat dinner.  Maybe I'll convert my sewing space into a painting area.

Calligraphy
Another art form I haven't practiced in a long time.  This takes a very steady hand though.  Mine shakes a lot lately and I have trouble even writing some days so maybe I'll wait on this one. http://www.studioarts.net/calligraphy/

The Womanly Arts: Needlecraft
I've stopped sewing since I've been sick.  Since I make my own patterns I have to be up and about and moving around constantly to sew which is too much for me these days.  I was actually sewing a lot when I first got ill.  I didn't know this wouldn't go away and I was in the middle of making a skating dress for a competition.  I remember wanting desperately to fall asleep while I was sewing.  However, there is also knitting which is much more sedate, along with embroidery, crochet, cross stitch, rug hooking, etc.  Maybe I'll try some embroidery again.  I haven't done any in about 25 years.





Printmaking
Carve up a potato, roll on some paint and print away.  Time to make some homemade cards for the holidays.  Stickers, glue, sparkles, different papers, cut up old holiday cards.  Be creative.  What the hey, cheat.  Do the black part on the computer and then fill in the color with your kids' paint set.  Easy piesy.






Make Music
Screw Guitar Hero, buy a recorder.  It is a small handheld instrument that was popular a few hundred years ago.  It is easy to learn (I learned it in kindergarten) and you can play some fairly complicated music on it when you get good at it.  There is also violin, a real guitar, cello, viola, keyboards.  Drums are a bit energetic.  My friend who is dealing with cancer right now has been writing blues songs since he has been ill but he has played guitar for decades. 

Take a Virtual Museum Tour
Most of the big museums have virtual tours that can be done on line.  This is particularly fun if you have a technophile in the family that has a large HD plasma TV with a computer hooked up to it.  I sat with a wireless keyboard and mouse in my lap and toured the Prado in Madrid for three hours while laying on my couch.  It was a blast and I saw a lot of very famous paintings complete with audio guide.  http://www.museodelprado.es/en/the-collection/what-to-see/

Play Blogspot Roulette
This is a fun online game I invented.  Go to any blog that is part of the blogspot family such as mine :-)  Use the "next blog" button in the top menu bar to go a semi-random blog.  If it isn't interesting press again.  This button will cycle through roughly ten blogs before you get back to where you started.  To jump out of this loop and into another one click on one of the blog links that the author has posted that has an orange B next to it.  This will jump you to another blog outside the first loop.  You can then use "next blog" to cruise through a fresh set of blogs.  Switch between the two methods to find blogs on random subjects.  This is how I've stumbled upon some ultra cool stuff such as http://rulesformyunbornson.tumblr.com/ 

Ornithology
My friend who is a professional ornithologist told me that 90% of bird identification is done by ear not sight so spend some time learning bird songs.  Then next time you sit out on the deck you can try and identify the birds by their songs rather than trying to remember where the hell you put the binoculars and the birdguide.  http://www.enature.com/fieldguides/view_default.asp?curGroupID=1
BTW, it was my friend that told me that the tortured cat sound I was hearing at night was really an Eastern Screech Owl.  Freaked me out when I first heard it.  Although I hear these every summer I have never seen one.

Saturday, September 11, 2010

The Call of the Wild

I was reading another CFS blog and the woman was lamenting about having fun things to do when you can't do anything.  I do this all the time myself but it got me wondering, "What have I been doing to entertain myself when I can't move?"  Basically I sit outside and enjoy nature.  I watch things I was too busy to notice when I was well, birds, bees, butterflies, stars, meteors, clouds.  Since I didn't have to get up for work the next day I had the privilege of laying out on my deck late at night wrapped in a blanket to watch the Pleiades Meteor shower this year.  It is an annual event which I have never spent a lot of time on.  It is a bit slow by our Boston standards.  I am so glad I spent several hours out there watching the meteors streak across the sky.

So here is the conundrum: we live on planet earth and we come from nature but most of us work in an office building, get around in cars and live in a house.  Can you name the trees in your yard or on your block?  Do you know the names of the birds that come around for a visit?  Do you know what grasses grow in your lawn?  Did you know that there are over 20,000 species of bees?  Or that the Monarch butterfly migrate from Canada to Mexico and it takes 2-3 generations to complete?

So I have a challenge for you, learn about where you live.  Learn the names of the things you share this little patch of earth with.  What bugs are in the soil?  What bushes are outside your window?  What makes that weird sound at night?  Why do the ants like coming inside your house?

Our One Precious Life

There is no where else than here.
The only gate is now.
The only doorway is your own body and mind.
There’s nowhere to go…there’s nothing else to be.
There’s no destination.

It’s not something to aim for in the afterlife.
It’s simply the quality of this moment.
Just this…this room where (you) are.
Pay attention to that…
Pay attention.”

— Poets Jane Hirshfeld & W.S. Merwin

Image courtesy of Osel Shen Phen Ling
Medicine Buddha

Friday, September 10, 2010

On a Clear Evening You Can See Forever

I had acupuncture again today using the FM protocols.  I crashed shortly afterwards and have just risen after spending five hours on the couch.  I feel normal right now.  Like I could go ice skating or do jumping jacks.  My head is clear and I want to jump for joy.  This is the best I've felt in weeks.  I think I will probably take a sedate walk around the block instead.  Keeping an eye out for stars and the one planet that is mid sky right now, breathing in the crisp Autumn air.  I'm going to enjoy this moment while it lasts and try to restrain myself so I don't crash tomorrow.

Why?

This post isn't about what you expect.  It isn't asking the question why am I sick?  It is asking the question why do people behave the way they do?  I'm not a people person.  I'm a registered, off the scale, Myers-Briggs official extreme introvert so people often do things that baffle me.  I just don't get it.

I am starting to reach the breaking point of one of the few friendships I have managed to maintain.  This is what happened.  She emailed me wondering if we could get together for movie night this Saturday or next.  This is something I've done with lots of success with other friends.  It is low key.  I don't have to talk much or do much.  We sit and watch a movie together on my big screen TV and then chat over coffee afterwards.  It is an easy and fun way of entertaining.  So I email her back that this Saturday at 8pm would be perfect.  I also put in a cautionary note that if I'm not feeling well I might have to cancel at the last minute since I don't know on a day to day basis if I'm going to be okay or not.  Days later I get this email back that she is now going canoeing that day and doesn't know if she'll be back by 8pm to come over my house for the movie.  Can we get together the following weekend?  That's a no.  If I'm doing ok I'm attempting to go to a wedding.  Of course the following two or more weeks aren't good for her since she has other plans.  I tell her to contact me when she gets back from traveling so I don't expect to hear from her for months if ever again.

Here is a bit of background.  She loves talking.  She knows best.  She eats dinner at 8 or 9pm.  She doesn't have kids.  She stays up late at night and gets up late in the morning.  She is afraid of aging and hates hanging around "old" people even though she is already in her 50's.  She is busy busy busy and fills her days up with lots of stuff to do.  In order to get together in the past I've had to book it literally months in advance.  We had booked a movie night months ago but I had to cancel after a TB test made me crash hard and I was bedridden with a fever.  I couldn't even talk because my throat hurt so much.  Hubby had to call her to cancel.  I got an email the next day from her that she had managed to rescue her plans and found something else to do.  She never asked me how I was doing.  Thanks for caring.

I keep running over this week's events in my head.  Why ask someone to get together and then say it is inconvenient for you?  Why ask someone who is major league ill to hang out and then dictate the time and place to them because you eat dinner at 8pm even though the rest of the local universe eats around 6pm?  Why get all snitty with someone who is very ill had to cancel on you?  Why would you go months without asking how they are even though we are supposed to be friends?  What is wrong with this woman?  Can't deal with aging?  Can't deal with people getting sick?  Is she trying to avoid her own mortality?  She certainly has hamfisted control over her little world she has created for herself.  She runs her own business and has a milquetoast for a husband (whom I love dearly BTW he is such a nice person).  Every thing is tightly under her control.  I think I'm done with her.  I'm going to set the rules from now on.  I'm the one who is ill and needs to set the timetable and location and the content of our get togethers.  If she doesn't like it tough noogies.  Go find someone else to boss around.  I'm very angry about being treated this way.

Thursday, September 9, 2010

Catch 22

Damned if I do damned if I don't. Since becoming ill my stomach has been dicey at best. When I very first got ill back in May I couldn't tolerate food at all. My acupuncturist put me on a diet of double boiled rice, which is plain white rice cooked twice. Boring as hell to eat but at least I could get something down. Slowly I managed to add a bit of chicken or salmon to it and some plain vegetables. I then graduated to a Japanese inspired broth that had rice noodles, stir fry vegetables and soy and lots of ginger in it. I craved ginger. I used it in every meal. I drank ginger ale. I wanted ginger. I'm not much of a ginger aficionado so this was a bit odd for me but whatever was driving this my stomach was just fine with it. After a few weeks I graduated to real food again. Plain chicken or fish with plain vegetables and rice based products. No dairy. I even switched to almond milk so I could eat rice cereal again. After a month or so I could tolerate yogurt and eventually milk in tea but not a lot. Today I can eat plain food. Night shade vegetables and dairy are still troublesome and I absolutely can't have spicy food.  I also have to avoid cinnamon and fruit drinks.  I am on a nice bland English diet.

This poses a problem. I'm tired all the time and often have no energy to cook. However, if I go out to eat I often end up spending the evening in the John afterwards. My digestive system just can't handle the food. I'm not sure if it is the extraneous wheat, the spices, the ubiquitous mashed potatoes that get served with everything. I just don't know what triggers it. I wish I had the energy to stay home and cook every night. I wish I had the money to hire a cook. I think a macrobiotic diet at this point would be a good idea. I just need someone to cook for me.  Eating out doesn't seem to be working out well for me unless I stick to boring salads.  I miss real food.

What Is Wrong With Me?

I stopped eating wheat about five years ago. I've adjusted pretty well. I cheat here and there but they are usually small bites unless it involves chocolate cake. I'm not celiac so I don't have serious health problems if I cheat just severe brain fog and cramping. I know TMI. Anyway, I have never ever eaten American sausage. Hate the stuff. It is icky. I'm also not crazy about peppers. Haven't liked them for 20 years or so. So what happened to me? I've been craving food all day, which in itself is weird. This illness has curbed my appetite not made it worse, but today I just wanted to eat constantly. I ate all of my GF cookies, half a bag of Dove chocolate, my regular meals, corn cakes (similar to rice cakes) and I've probably forgotten a few things. I'm still hungry. Why oh why did husband choose tonight to leave his left over pizza on the table? It smelled so good. It has been calling to me since dinner. I kept hearing its siren song "I taste yummy. You miss eating pizza. Don't resist me. I taste wonderful. You love pizza." Oh I do. I DO. I so miss eating pizza. Real pizza. Not that rice crust crap they claim is pizza. The thick crispy crust with the soft doughy insides. The melted cheese. The tomato sauce burning the roof of my mouth. I lasted until 2am. I was SO hungry. I had to close the kitchen windows before going to bed and there it was smelling like mana from heaven. I couldn't resist its siren song any longer. I told myself it would only be one bite. One tiny bite. After all it had everything on it including sausage and peppers and I hate those. But I took one bite and I was lost. I took another and then another. It rapidly disappeared from my hand before I could talk myself out of this folly. When I was done I looked over at the table and the last piece still called to me from the pizza box but I fled the kitchen before I succumbed. I can't do it. I'll pay for this tomorrow. But OMG it tasted so GOOD. Despite the sausage and the peppers. Real pizza. Ohhhhhhh....... This is not good.

Wednesday, September 8, 2010

eXcellent news

The 1st International Conference on XMRV convened yesterday. According to the Wall Street Journal a new study is being launched. This time it is going to be a blind study of 100 CFS patients and 100 controls from geographically diverse area. Once the blood is drawn and prepped it will then be sent to FDA, WPI and CDC to see what they can see. This is awesome! Maybe we will finally be taken seriously and they will start to unravel this mystery.

Tuesday, September 7, 2010

Thanks Everyone!

I'm still learning this blogging thing. I just discovered the "Stats" tab in blogspot. I didn't realize that it tracked the number, country of origin and orgination site of the readers of this blog. OMG, my mom isn't the only one reading this!! I'm actually in shock and my eyes are watering. I'm also starting to find comments on some of my posts. I have never had to check for these before. Wow! Is that cool or what?! I am so excited that people are starting to show up from all over the world to read my words. WOW! I just want to say thanks to everyone. I've tried to answer most of the comments. I might have missed a couple but at least I know to check now ;-)

Monday, September 6, 2010

Finances

Now that is a dirty word. When combined with a chronic debilitating illness things get even weirder.

Basically I am a very very VERY lucky person. Before I became ill I worked at a place for almost 12 years that has excellent benefits: six months of paid sick leave, they don't fire people when they get ill, they pay for everyone to have long term disability insurance. FMLA guarantees that you won't loose your job for the first three months you are out of work for either being sick yourself or having to care for someone who is ill. It does NOT guarantee pay just that your job will still be there if you get better within the three month period. After that all bets are off. Most places let you go if you are still unable to work. My place, five months later I'm still employed. I will still have a job if I have a miraculous recovery. I have been paid in full for the last four months. In the US that in itself is a miracle. Now I have to transition from FMLA protections which expired last month to the long term disability insurance which starts in a month or two. My illness has to be approved first so there is a slim chance I may not get it but that is why we have lawyers. I just found out that when on disability I get 60% of my pay which is taxable. The other great part is that the company picks up the medical, dental, vision and life insurance payments while I'm on disability. I don't have to pay for them! They also keep making payments to my 401k while I'm out sick! Holy crap! I'll keep the insurance for my family and still get a sizable paycheck. Like I said I am very VERY lucky.

Now here is where things get weird. Husband owns his own business. Since the economy took a nose dive his business has dried up. He is lucky he has the odd job here or there but that measly trickle of jobs don't even cover the rent on his shop space. Now his ego is tied up in this business. He has steadily built it up over the course of the last ten years. Until a year ago he always ran in the black. He was good at what he does and he had the business brains to run the company well. Now, through no fault of his own it is dying. He is selling off equipment to pay the bills. He is home most days now. He works on the house a lot, painting, fixing things. He isn't lazy by any means.

So here we are; we're both home and my salary is about to be cut. This is roughly the conversation that took place last night:

H: "You're Visa bill is $1800/month"
M: "That is gasoline and groceries. I don't buy anything else."
H: "Why is the grocery bill so high?"
M: " I have to eat GF food and I have to eat organic fruits and vegetables or my stomach gets upset."
H: "I can't believe we spend over a third of the monthly budget on food."
M: "Food is always the highest component of a household budget besides rent."
H; "How are you going to pay for this?"
M: dead silent, my brain isn't working since he picked the crash point of my day to have this conversation, I'm barely awake, lying on the couch only letting my eyes move around
H: "What are we going to do? My life has fallen apart."
M: (in my head) your life? what about me? I'm the one laid out on the couch unable to move. At least you can still run around, go places and work.
M: "What about getting your truck driving licence? You like driving and trucks. You could do deliveries." (I have already tried this tactic on other days with the jobs of electrician and auto mechanic. He has four good skills, sound engineer, electrician, auto mechanic and the aforementioned driving)
H: long pause "If I get my CDL and then get in any kind of car accident there are huge fines. If we didn't live near Boston that is a good idea."


Now, I've been poor before. I grew up poor. The name of the game was to work. You got a job so that you always had income. It didn't matter if you were slinging hash or bagging groceries. You worked. Now I am listening to both my husband and kid come up with a stream of excuses why they can't go out and get jobs to help with the bills. Ok. I keep my mouth shut. I don't say anything.

But around 3am when my brain switched back on again and I absorbed the conversation I just documented something clicked. What about that car he just bought? The 1950's Bel Air he is having shipped from Oregon so that he has something to do this winter? Where is the money coming from for car parts? Why is he giving me crap about eating organic when he has just paid thousands of dollars for his THIRD project car. Yes this is number three! There are two other Bel Airs taking up the garage. I no longer figure skate. I no longer buy lunch every day. I no longer travel. I haven't bought clothes in over six months. I haven't purchased shoes in over a year. I haven't even gone out to the movies since I've been sick. The only thing I do is buy good wholesome food to help me feel ok. Now I am furious! I mean really furious. I can't sleep and today I don't want to be near him in case I rip his head off.


They always say that the money arguments aren't really about money. I'm curious what this one is about. My being ill? His loosing everything? The death of his career and business? Why do I have to be punished for this? Grieving for the loss of my old self? He has lost his partner. I can no longer do things with him or for him. I am a lump on the couch. On good days I can cook a lame meal. What is going on?

Sunday, September 5, 2010

And the Other Foot Falls

Back to my old groggy self today. It was nice to be almost normal for a couple of days. The dog waking me up this morning didn't help any. At least hubby traded our antibarking device for a bigger better one. This one is automatic so I don't have to aim it at the dog, which I was very bad at. It looks like a little brown birdhouse. Hubby has wedged it near the fence to be as close to the dog as possible even though it has a range of 50'. Hubby could nail the dog with the old handheld one from our bedroom window even though it only had a range of 30'. I can hardly wait for tomorrow morning to see how effective it is. Maybe I'll finally start having some undisturbed sleep for a change. I also have an acupuncture treatment tomorrow so I also looking forward to seeing if I feel normal for a couple of days following that.

Saturday, September 4, 2010

Whoa!

I went to accupuncture for the first time in two weeks this past Thursday. I had been doing horrible at the begining of the week. Very tired. Crashed for two days that included all the joints aching. I got back from acupuncture and slept all afternoon. Then I went to bed at 2am and slept really deeply. Much deeper than I normally do. I woke up Friday refreshed. I even tidied up a little which was the first time in weeks. Today after only 8 hours of sleep instead of the normal 10 I not only got up early but I just finished cleaning the kitchen counters, dry mopping the kichen floor, swifering away the cobwebs and doing a few dishes. WTF? What happened? Where did all this energy come from? I am amazed. I am shocked. Hope I didn't do to much. I don't want to crash again. But what a nice surprise. Days like this give me hope.

Friday, September 3, 2010

That is Where My Brain Went!

Good Intentions

"The world's just not as sparkly as you want it to be. We should all carry some glitter and add a little bit along the way." -Sleep Talkin' Man

Even if I am housebound and don't believe that happy thoughts will cure me, I do believe that I can make the world a better place in small ways.

I just found this awesome website: Nerdfighters They are a group of Nerds that work to "decrease the suck and increase the awesome" in the world. What a great idea! Oddly enough I came to this website because of another chronically ill chick, Esther Earl. She recently lost her fight with cancer and a story was done about her on NPR. Apparently she was housebound due to her fight but that didn't mean she couldn't do good. She was very active on line and as a result affected many lives. There is a wonderful tribute to her on nerdfighters. I now want to spread the news about nerdfighters in hopes that other nerds out there like me want to decrease the suck and increase the awesome. We CAN do good even if we are housebound!!

Thursday, September 2, 2010

A Simpler Explaination

Just found this post at Phoenix Rising. It is a great explaination of the two studies that have just been published that found MLV viruses in 80% of CFS patients. For the entire article with comments and links to other papers click here.



MLV related viruses - a simpler explanation
by Bob
on August 30th, 2010 at 07:36 PM
11 Comments

I've already posted a blog about MLV-related viruses but I thought it might be quite difficult to follow for some people who can't follow the science easily... So I've now written this shortened, simpler, version, which hopefully might be easier to grasp. (feedback welcome.)


MLV = Mouse Leukaemia virus

MLV's are mouse retroviruses that cause cancer in certain mice.

Judy Mikovits and Harvey Alter have discovered a variety of MLV-related viruses in ME/CFS patients.

These MLV-related viruses are not MLV's (mouse viruses) but they are closely related to them.

The only difference between Alter's viruses and Mikovits' viruses are that they are related to slightly different types of MLV's.

Judy Mikovits' viruses are related to Xenotropic MLV's, and so they are 'Xenotropic MLV-related viruses'.

Whereas Alter's viruses are related to Polytropic MLV's and so they are 'Polytropic MLV-related viruses'.

So the only difference between them is the use of the terms 'Xenotropic' and 'Polytropic'.

The terms 'Xenotropic' and 'Polytropic' indicate a slightly different behaviour of a virus.


XMRV = 'Xenotropic MLV-related virus':
X = Xenotropic
M = MLV (Murine Leukaemia Virus)
R = Related
V = Virus


Alter's viruses are 'Polytropic MLV-related viruses', and so he could have named them 'PMRV' (instead of XMRV). He hasn't named them PMRV, yet. Instead, he refers to them as Polytropic MLV-related viruses, or just MLV-related viruses.

All of the viruses found so far in the two papers, are MLV-related viruses, and they are Human Gamma Retroviruses (HGRV's), which is an umbrella term.


'Xenotropic' means that a virus cannot infect, or replicate in, its original host species (i.e. mice), but it can jump to another species (i.e. humans) where it can become a whole, complete, replicating virus.

'Polytropic' means that a virus can infect both its original host species (i.e. mice) and it can jump to another species (i.e. humans).

The difference in the meaning of the two terms is why the new viruses that Alter has detected cannot be called XMRV. Alter's viruses are related to Polytropic MLV's, not Xenotropic MLV's.

It remains to be seen how all of these new viruses, or variants, will be labelled and categorised.
XMRV's (more than one variant of XMRV has now been detected by Judy Mikovits) are clearly a subset of a larger group of viruses (MLV-related viruses and Human Gamma Retroviruses).
We might end up with a new collective name for all of these MLV-related viruses.

Are Alter's viruses and Mikovits' viruses different variants of the same virus, or are they totally different viruses?
Obviously there are differences, but the similarities seem to be more significant than the differences.

Alter says that these differences are exactly what he expects to see in a retrovirus, so these observed virus mutations support the type of human retrovirus infection that Mikovits' XMRV research indicated.
Alter says that the Hep C and HIV viruses exhibit the same pattern of variants as this new type of human retrovirus that Alter and Mikovits have found in ME/CFS patients.

Indications from Alter are that all these viruses might be referred to as variants of a single disease associated virus, just the same as the multiple Hep C virus variants are often referred to as the Hep C virus (singular).

Of course, it might turn out that these retroviruses are also associated with other diseases, such as Fibromyalgia, Gulf War Syndrome, MS, Autism.

30 Things About My Invisible Illness You May Not Know

1. The illness I live with is:
CFS? Right now I have the diagnosis of mono but my primary says my symptoms don't match up so I'm heading to another specialist in a couple of weeks.

2. I was diagnosed with it in the year:
2010 hopefully

3. But I had symptoms since:
May 2010, I'm new to this

4. The biggest adjustment I’ve had to make is:
Not being able to do ANYTHING

5. Most people assume:
If I just _____ I'll get better.

6. The hardest part about mornings are:
Finding a reason to get out of bed.

7. My favorite medical TV show is:
House

8. A gadget I couldn’t live without is:
Computer with an internet connection: it is my link to the outside world

9. The hardest part about nights are:
I like nights. I usually feel pretty normal after my late afternoon/early evening rest session. The house is quiet and I can putter around or watch what I want on TV without having to worry about others.

10. Each day I take __ pills & vitamins. (No comments, please)
No meds. I tried taking a fist full of vitamins for several weeks but when they didn't do anything I stopped.

11. Regarding alternative treatments I:
Am currently using chiropractic and acupuncture. I am considering naturopathy and osteopathy.

12. If I had to choose between an invisible illness or visible I would choose:
Visible. The last time I had a protracted invisible illness my supervisor at an old job (not my present one) gave me crap for only working part time when another guy came in even though he was having chemo treatments at the time. I haven't let my current supervisor know what I have. I have been working through HR to keep a lid on it.

13. Regarding working and career:
I have been out of work for four months now. I have been replaced by others on all programs I used to work on. I have lost my office so that if I ever go back I will have to unpack a stack of moving boxes. I'll be lucky if I have a computer desk and a bookcase. I have probably killed my career dead even if I make it back to work. When people get really ill there no one wants to work with you since you are now "unreliable".

14. People would be surprised to know:
I was in the middle of my first ever figure skating competitive season when I got ill. I won a bronze and a silver medal and had one more competition to go. I was planning on skating with my mom in the adult week ice show in Lake Placid this summer.

15. The hardest thing to accept about my new reality has been:
Boredom. I'm 80% housebound and spend most of the day laying down. What the heck can I do with my time when I can't do anything?

16. Something I never thought I could do with my illness that I did was:
Learn to relax properly.

17. The commercials about my illness:
Since there is no cure for CFS there are no pills to advertise yet.

18. Something I really miss doing since I was diagnosed is:
Skating

19. It was really hard to have to give up:
Eating desserts. Since I am not exercising at all I am gaining weight even though I am eating way less food and have an ultra healthy diet. My body needs exercise to maintain its weight and I just can't do it.

20. A new hobby I have taken up since my diagnosis is:
Blogging in multiple blogs

21. If I could have one day of feeling normal again I would:
Drive to Lake Placid and skate with my mom and sister.

22. My illness has taught me:
Patience and how to say no

23. Want to know a secret? One thing people say that gets under my skin is:
Have you tried ____? It should fix _____.

24. But I love it when people:
Tell me they miss me.

25. My favorite motto, scripture, quote that gets me through tough times is:
"Barn's burned now, now I can see the moon." -Masahide

26. When someone is diagnosed I’d like to tell them:
There are two new studies out showing a link between CFS and viruses. Maybe they might just figure this out and we'll have some antiviral drug protocols within a few years.

27. Something that has surprised me about living with an illness is:
How cranky my husband gets. How great my kid is.

28. The nicest thing someone did for me when I wasn’t feeling well was:
Sent me a Tibetan Healing Bell CD which he recorded. It helps me sleep.

29. I’m involved with Invisible Illness Week because:
I'm an advocate at heart and we need to make ourselves visible even if we are housebound.

30. The fact that you read this list makes me feel:
Proud. Maybe this blogging thing will get the word out and help others.

This Strange Fatigue

My kid asked me today why I just couldn't get up earlier in the day (I typically sleep until 11am or later). He looked at me and asked "you know how you feel weird if you sleep in too much. Can't you just get up earlier?" I wish it were that easy. The fatigue of my illness is so strange. It isn't being tired. Sleep won't fix this. It's more like the battery in the car dying. If it were a matter of just being tired I would be able to sleep and wake up refreshed. Like shutting the car off, fixing the battery and we're good to go again. This is more like being in the middle of the highway and suddenly the headlights start to dim, the dashboard lights start to go dark and you know you are in big big trouble. It is the oddest thing. I'll be going along and I start to notice muscle weakness. My gait slows. I want desperately to sit down. My legs feel heavy and my feet start dragging. I start having dizzy spells. If I push on as when I decide to make dinner sitting on a bar stool so I can reach the stove instead of lying down like I know I should be doing, then I no longer can open lids on jars that aren't brand new. My speech starts to slur. I loose words. I can't concentrate. I loose my place in the recipe even if it is simple. I forget what I'm doing when I'm in the middle of doing it. If I keep going, keep pushing because I just want to feed my family, I get a short temper, I snap at my husband, I get upset easily and end up crying. But I keep pushing and now I can't walk straight. I have to use the counter to hold me up, to keep my balance. I am beyond talking. I can't put sentences together. I can't hold a conversation. I desperately want to lie down and literally not move a muscle. I don't have to sleep. I have to NOT move. Not even twitch. I have to lie very very still. I am done. I loose time when I get like this. I have no idea if I sleep. Time passes unnoticed. I am as still as the dead. Uncounted hours pass and I slowly, very slowly come back to life. First I change position because I finally am able to notice that body parts have fallen asleep. Hands or feet have gone numb. Shoulders or hips ache. I finally have the energy to roll over. Slowly I am able to sit up again. In small bursts at first. A few minutes up and then I have to lie down again or I have already forgotten why I wanted to get up in the first place. Slowly I can sit up for longer or even venture a walk down the hall to the kitchen or bathroom still using the walls for balance. Slowly very slowly I can walk unsupported, fetch my own drinks or a piece of fruit. Slowly I can pay attention to the TV again, watch a show or a movie. Slowly very slowly I can sit at the computer and read emails, read Facebook posts or read the blogs. Slowly I can answer emails, I can type again and hold conversations that make sense. Then, finally I am human again. A fully functional walking, talking human that can think and communicate and feel again. This happens every day.