Friday, November 30, 2012

Pills, Pills and More Pills

Luckily I'm on very few prescription meds.  Celebrex for pain, low dose trazadone for sleep and tramadol if I have a really bad pain day which isn't very often.

Supplements however are another story.  I have tons of them.  Every doc I go to puts me on more of them.  I have been to eight health care practitioners and see four of them regularly and almost all of them have put me on one supplement or another.  I also have tapped the patient community to see what has worked for others with the same illness such as melatonin for sleep or the methylation protocol which includes three different pills and several drops.  Between all the docs and the patients, I ended up with a pill collection that took up an entire shelf in my fridge and an entire chunk of counter space in the kitchen.  However, between neglect, trial and error and plain old forgetfulness  I ended up taking roughly 20 pills per day, frequently less (did I mention the forgetfulness?).

At this point in the game, I don't even remember who told me to take the things, never mind dosing and the reasoning.  I have no idea if most of them are even doing any good.  I know about five of them help but the rest I'm taking because someone told me I needed to.

Two weeks ago I went to my chiropractor.  He is strongly intuitive: i.e. he can sense things in the body, what is wrong and what is right.  He can also sense energy flow.  I trust him completely and he has helped me overcome many physical problems.  Anyway, we were talking and he mentioned muscle testing supplements and a light bulb went off.  Why the heck hadn't I thought of this sooner!?!  So I made a special appointment for today for a long session.  I had my adjustment and then my son emptied out the two boxes of supplements onto the desk and we sat down for a muscle testing session.  We had some surprising results.  Stuff he swore by, I didn't need. Stuff he wouldn't have given me, I do need.  Stuff I thought was helping me, he told me not to take. He is sensitive enough that I even got dosing levels from him.  My son took notes and most of the pills were a no go.  Woohoo!!

I went away so happy.  I'm down to my original meds and eight supplements.  Six for right now and two to add in when I'm done healing from the oral surgery I had on Monday.  I got home and felt like a weight had been lifted.  I had tried to go through the supplement lists with my two CFS docs and I either ran out of time or they guessed at what I should be taking or guessed at dosing.  But now I have some answers tailored specifically to my body's needs.  My body let him know what I need to take and what not to take and how much.  I'm so happy that the number has been so drastically reduced.  I got to throw pills out.  I got to clean out my fridge shelf.  Them I rearranged all the ones I not using right now and put them in storage in the fridge.  I only have the ten bottles out on the counter and I'm ecstatic!  I feel like I have made some progress with my illness.  I feel like I'm a little better.  I feel a little bit more normal.  I'm also so very happy that someone took the time to finally help me figure this out.  I have a custom tailored med/supplement plan.  Now to see if I get some improvement out of it....

Notes:  Muscle testing is formerly called Applied Kinesiology.  There is a lot of debate surrounding it regarding whether it is legitimate or not.  I have had it fail me before when I had nutrition testing done this way.  However, I think with my chiropractor's strong intuitive abilities I trust his ability to do the muscle testing in a way that is valid and will help me.  So readers, take this with a healthy dose of skepticism.  Do some reading and decide for yourselves if you want to give this a go. If you noticed I didn't include my meds in this testing.  I do trust traditional western medicine for some things.  However, they tend not to be well versed in vitamin and mineral supplementation.  For more reading:
International College of Applied Kinesiology
Applied Kinesiology Center of Los Angeles

Thursday, November 29, 2012

Minor Surgery

I've had a recurring small hard lump show up and disappear just inside my mouth.  When it gets big enough I bite it by accident and I get a whopper of a blood blister and it gets even bigger.

I finally went to an oral surgeon and he removed it.  So I've been recovering from minor surgery since Monday.  Of course a normal person would be up, walking around, going to work and taking aspirin for the pain.  Not me.  I've spent the last three days unable to get off the couch.  The first 24 hours my mouth hurt so badly even my teeth hurt and I had to crack open my stash of Tramadol.  Today is the first day I managed to skip pain killers most of the day.  I'll have to take some before I go to sleep.

Of course recovery for a CFSer isn't a simple thing.  I can't detox from the surgery because I have to take pain meds.  I can't sleep properly because I'm in pain, I can't wear my dental sleep appliance so I'm not sleeping well when I do get to sleep and I can't eat my regular diet since I can only tolerate soft foods.  Of course eating a real food diet means I use my teeth all the time and chew a lot so I'm off my normal diet completely.  So I'm tired, toxic, underfed and haven't drunk enough water.  Holy crap.  Such a simple thing becomes so difficult so fast.

They are biopsying the lump.  I'll know the results next week.  I had to return to the doc this morning because when I woke up my entire lip was swollen and my mouth hurt again.  I'm scared to death of infection since once they start they just take off because of my compromised immune system.  So he gave me antibiotics to take.  This of course will mess up my stomach flora which I just got cranking by eating fermented foods and yogurts.  Sigh....  I can't win sometimes...

However, there was some humor in my day.  I cracked open my new med bottle to find it full of blue pills.  I guess I'm stuck in the Matrix for a while longer....

Sunday, November 25, 2012

Cutting The Ties That Bind

Prior to my getting sick I figure skated for several years.  I had done it as a kid and passed a couple of tests but gave it up in my teens.  After a being rear ended twice and spending a year on the couch as a result I was pretty out of shape.  I decided that I needed exercise and I wanted to do something fun.  I had already been doing water yoga to help with my recovery and I knew it was time to step it up a notch.  I found a figure skating class for adults and joined up.

Turns out the teacher was a serious figure skater who, back in the day, competed at the national level and had been coached by one of the big guns back in the sixties, i.e. she was an awesome coach.  I got hooked.  I went to Lake Placid to see my Mum compete in Adult Nationals and while there saw the other women competing at bronze level and walked away with a new goal; I wanted to compete.  I knew I could do it.  I knew I could skate that well.  I went back to my coach and started training.  I needed to pass four tests before I could compete at nationals and also get some experience in the local competitions.

I skated at four different ice rinks but mostly with two clubs, one of which was small enough to get to know me.  Since that was the club with the adult class, I made friends there.  Four of us formed a small group.  We were the adults that kept coming back.  The ones that wouldn't quit even though it was hard.  We became friends.  We were a disparate group; I was the oldest, then a man that used to work at the same lab as me, and two younger professional women in their late twenties.  We went to local ice shows together.  We went to competitions together to support each other.  We were eventually asked to perform in the ice club show.  I came up with the idea of doing Bali Hai to the old Frank Sinatra number.  I made the costumes and recorded the music.  We had great fun.

After I got sick, I stayed in occasional touch with each of them.  I went to the Christmas shows and the club's end of year exhibition to watch them skate and visit with them and my coach.  It has been two and half years since I skated with them.  It has been two and a half years since getting sick.  The emails have tapered off.  I haven't heard from one of the girls for almost a year even though she now lives in the same town as me and is friends with me on Facebook.  The other girl had two children so she is busy with her family.  I still hear from her once in a while but she isn't skating right now.  The guy sends me email a couple of times a year to check up on me.

Well today I found out that the club's holiday show was this evening.  No one told me about it.  No one asked if I was coming to watch it. Not one single email letting me know it was happening.  I have been forgotten.  They have moved on.  Since I no longer skate with them, they are gone.  I am so very sad.  I keep crying.  Not that they were close friends, we only had skating in common.  But we had gone places together, gone out to eat together, gone to shows together and supported each other in competitions.  I thought the ties would last longer.  I didn't think they were that fragile.  But they are almost completely gone.  I can't quite let go completely.  I still hold out hope that I'll return to the ice in a couple of years.  I'm crossing my fingers that my coach will still be teaching.  How will I treat them when I see them again?  How will they treat me?  I think I'm going to be really angry when I get back out in the real world.  Really pissed off at the people that abandoned me when I was sick.  What kind of friends do that?  How had this become acceptable in this society?  I'm hurting.  The emotional hurts cut far deeper than the physical illness ever could.

Sunday, November 18, 2012

Crash Recovery

I can't explain what it is like to crash and then recover.  It is like my entire body shuts down.  I've been reading lately about the central nervous system's involvement in CFS.  I know it has severely affected my brain.  I guess the CNS involvement explains the weird constellation of crash symptoms.

I don't breath right.  My husband has caught me not breathing at all.  He'll suddenly yell at me "Breath!!".  I can't swallow properly and chewing food becomes a problem.  My eyesight gets really fuzzy.  I'm severely dizzy.  First my ability to find the right word goes, then spelling, then typing, then speech altogether.  When I've been really bad thinking in complete sentences has been impossible.  It is like my brain is swimming and is no longer connected to my body in any way.  It is a strange sensation.  One that I've only experienced prior to fainting.  But during a crash it is constant.

When I'm coming out of it it is like a veil being lifted.  Suddenly I can think again.  Then I can see.  Soon I'll be able to get off the couch and walk around without that weird floaty tilt-a-whirl feeling.  I'm curious how far I'll come out of the pit.  I won't know until tomorrow.

Thursday, November 8, 2012


Update on Hubs and the Insurance Fiasco

I finally fessed up to hubs that I was super angry at him for ignoring the Medicare and health insurance forms.  Since I had let several weeks pass I was no longer inclined to call him strings of four letter words and could hold a grown up discussion with him about it.  I told him how angry I was.  I made sure he understood how angry I was.  I told him that I don't have insurance for some time period because of him ignoring the paperwork.  I explained that when I ask for something done it is because I can NOT do it.  I'm not the type to make others do my own work.  I have always taken care of things on my own without expecting help.  For heaven's sake I was practically a single mom for 15 years since he was out working so much.  I lived on my own for many years before we got married.  I'm not one of those clingy dependent people.  So when I ask for help I NEED help.  I think he got it.  He made one of those fake husband apologies which is an improvement over the not apologizing at all things he has done for 20+ years so improvement.  Things I accomplished:

He knows he messed up big time.
He knows I need real help when I ask for it.
He sort of apologized.  (a vast improvement)
He said if I needed medical attention then it would be paid for out of pocket if insurance didn't cover it.
We discussed his frustration with my illness and I acknowledged his burden.

Baby steps.

Wednesday, November 7, 2012

Slap in the Face

I always seem to think that the CFS community is just one big happy supportive family.  Once in a while I get a taste of reality.

The first time this happened was a couple of years ago when I was new to the community and I had someone hating on me for using the term "CFS" to describe my illness.  She was insisting that if I didn't call it ME I didn't have a real illness.  Um, I'm still wicked sick no matter what the heck you call it.  I cut off all contact with her so I didn't have to listen to the vitriol anymore.  I'm too sick to be dealing with people like that.  To misquote the Blues Brothers "she was on a mission from God" so it was a complete waste of my very limited energy to interact with her.

Today was another reminder that people in the CFS community aren't always that friendly or supportive.  About two years ago I met someone through the CFS blogs.  She wrote her own blog and I got to know her through that.  When she became bedridden and unable to read anymore I sent her a bible on CD since I knew that was important to her.  She loved it and thanked me for the gift.  The months roll on and she recovers.  She goes out into the world and leaves the CFS community behind.  This is as it should be.  I hope all of us are that lucky.  We kept in touch on Facebook and I heard all about her adventures out in the big wide world.  I admit I was slightly jealous but again, this is as it should be.

Well then the election gets going and we are on opposite sides of the aisle.   No biggie we both said.  We could still be friends even though we have different political views and we even went so far as to agree that some healthy discourse would be good.  We could explore the issues from both sides.  We could learn from each other.  We had a couple of heated discussions and I decided in the best interest of our friendship to hide her Facebook posts.  This would reduce my temptation to start arguing various points with her since we obviously had some deep philosophical differences that were influencing our politics.  I made sure I didn't post just political stuff since I still have other interests not just politics and I didn't want to alienate all of my friends by becoming myopic.  I was never sure if she hid my posts as well since she never commented much on my posts even prior to the election but I wouldn't be at all surprised.

I kept checking her page once in a while to keep tabs on her and to see if she was posting anything besides political items and the answer was no.  In fact as the election drew near her posts got more and more desperate.  She was making comments like she was heartsick or nauseous or crying because of the liberals and how we were ruining the country.  So I checked up on her last night after Romney lost.  I was kind of worried and a bit morbidly curious if she would have a complete meltdown.  Instead she was in denial.  Along with Fox news she was waiting for all the Ohio counts to come in.  Romney couldn't possibly have lost.

So today I went to check on her again.  Not only had she defriended me but completely blocked me so I could no longer see her page or message her.  This is someone I supported through the worst of her illness.  Someone I worried about and checked up on if I didn't see posts for a while.  Someone I exchanged recipes with.  Someone I had never met but sent gifts to because she was in need.  I know I shouldn't expect anything in return but holy crap!  Really!?!

This is what a God fearing Christian republican does to someone just because they are a liberal democrat?   What in hell??  This is such a slap in the face!  Such an FU!  When did behavior like this become acceptable?  It certainly isn't Christian.  Do the republicans condone this?  Do they encourage it?  Screw the democrats and their evil liberal ways!  Don't associate with THOSE people! Apparently she pitched a whole bunch of people out of her Facebook account today.  She claimed it was due to the CFSers no longer being active on FB.  I wonder if she is so angry and upset about Romney loosing she is now taking it out on her friends.  She is getting rid of anyone that is a democrat.  What a sad way to be.  I feel sorry for her that her world has become that narrow.  That tiny.  Her mindset is so small that she can't possibly accept views that contradict her own.

So now I'm thinking about things.  Things such as, should I send presents to people I don't know?  Should I make friends on the internet?  Should I trust the CFS community?  But when I think about it, I've met some wonderful people online.  I've met some wonderful people in the CFS community.  I don't want to stop helping people just because a few people have atrocious manners.  I should give without expectation.

As someone told me after my altercation with the vitriolic ME person, "if they were sour grapes before they got sick they will be sour grapes after they get sick."  There is nothing magical about being a CFS patient that makes us supportive understanding friends.  We might share CFS in common but sometimes that just isn't enough to make a friendship.  So I'm angry.  I'm sad.  I'm licking my wounds.  But tomorrow is another day.  There are lots of cool people out in the world that I still haven't met.  Maybe some of them would even like to meet me.

Saturday, November 3, 2012

Primal Plus

I mentioned several times over that I've gone on a Primal style diet (Paleo + dairy) and that I follow it about 80-90% of the time.  I've been at it for a year now and I've got some good news to report:

  • My hair is thicker.  Yup.  Wasn't expecting that one.  I knew my hair has been healthier since going 'pooless many months ago but hadn't noticed that it was falling out less.  Maybe it was the addition of iodine to my diet that knocked it over the edge.  Thinking back these past few months much less of my hair has been ending up in my comb and lining the bathroom sink.  In fact I hardly have to clean my comb at all.  The other day I noticed that the small elastic bands are starting to be difficult to put on.  A year ago I was tripling them over if not quadrupling them over.  Now I can barely make a double fold.  I even broke on the bands the other day trying to stretch it over my ponytail.  Woohoo!!!  My hair has been falling out for the last three decades!  Yup, 30 years.  I used to have hair so thick I had to buy the huge elastic bands for my braid.  I've been using the small ones for decades now.  Hubs used to find my hair all over the house.  I just shed like crazy.  Now?  Almost nothing.  I'm no longer pulling it out the bathtub drain, having to clean out the sink after a comb through or brush of my clothing.  I am so excited about this!  YAY!
  • My teeth are cleaner.  I had noticed them getting a tad whiter and they felt cleaner to me but the other week my dentist confirmed it.  She was getting me ready for my six month cleaning and said "you must be one of those people that just naturally get less plaque buildup".  Now this is monumental for me.  I'm English.  My teeth are chock full of fillings.  At one point I didn't see a dentist for 10 years or so; a combination of no insurance, no money and abject fear.  The first time I had to get my teeth cleaned they were so bad after an hour I had to come back for another one hour session for her to finish up.  I have improved my dental hygiene by leaps and bounds since that incident 15 years ago but never had a hygienist say my teeth looked good before she started working on me.  Anywho...   My new hygienist doesn't know my history.  All she saw were sparkly clean teeth that didn't need much work.  Yay me!! 
So HOORAY FOR PRIMAL FOOD!!  It is fixing my body slowly but surely.  Now if my CFS would just clear up....

Friday, November 2, 2012

Hello Coffee!

In order to further my experiment of N=1 vs coffee I had another medium one today.  This time with a hamburger instead of a sugar bomb.  And, Ta Da!!  12 hours later and no blood sugar crash!!  Just many many hours of functioning brain.  Woohoo!!  So I hereby welcome coffee back into my daily routine!  Not overboard crazy three cups a day back but one reasonably sized cup, 8-12oz to get specific.

Anyway, here is a little vid I found today on caffeine and coffee.  Don't forget either drink it black or with lots of grass fed heavy cream.  Skip the sugar.  YUM!