Sunday, December 23, 2012

Reveling in Slowness

I was stuck in bed today.  Yesterday started with a trip to the ER for a bladder infection that came on rapidly and ended with a migraine.  So today was a day spent in bed.  You would think it makes me sad and in some ways it does.  Hubs threw one of his predictable temper tantrums but was much better after some car therapy in the garage.  I'm annoyed that I am THAT sick.  AGAIN!

However, there are certain days that I revel in the slowness of being bed bound. Today was one of those days.  I've renewed my love of radio broadcasts.  I get to listen to NPR's Saturday lineup which consists of Wait Wait Don't Tell Me, the Radio Lab and the Vermont Story Slam.  All of which are wonderful to listen to on a slow afternoon.   It is a strange combination of geekyness and story telling.  Today was an odd combination of grammar jokes, mathematics and personal stories.   And it was wonderful!

While I listen to the radio, I get to watch the clouds floating around; forming and dissipating on their own schedule.  I also get to figure out the air traffic patterns out of Logan for the day.  This changes with the weather and wind so I'm never quite sure which way the planes will fly on any given day.  Of course, during warmer weather I also get to listen to and watch the neighborhood birds.  Today being the day after winter solstice, however, I got to watch the bare tree branches bobbing in the wind which is almost as calming as watching ocean waves crash on the beach but without the dramatic sound effects.

Today I was treated not only with sunshine through my window (a rarity this month) but also a spectacular sunset.  If I had been doing my usual thing I would have missed the short lived glory of the brilliant red clouds.  So sometimes I enjoy lying abed all day.  I get to see life that occurs on a slower scale than we normally live it.  All the subtly that we are too busy and too bustling to normally see.  So despite being sicker than normal and hubs' hissy fits, I had a nice day.  An enjoyable day.  A day reveling in slowness.

Monday, December 17, 2012

The Hormonal Apocalypse

Just to add to the general fun and games of CFS, being female throws an extra curve ball into the works every month or so.  Yup, this was the week of the Hormonal Apocalypse otherwise know as my period.  What makes it worse is that since the CFS started I have no idea when it will show up.  It skipped a month this time so arrived unannounced on Friday evening.  This explains my bizarre meltdown on Wednesday closely followed by the three day physical crash and burn culminating in not being able to get out of bed yesterday.  Ah fun times...

 At least when I was healthy, I knew when it was coming and I understood my bizarre behavior and took some extra B6 to avert the sense of impending doom.  I tend to get very VERY depressed just before my period.  It slowly builds the week before to climax in an epic meltdown.  It was so predictable that when I went crying to hubs that I was a terrible mother/wife/employee/fillintheblank, he would ask me if my period was coming up.  This meltdown phase rapidly ends as soon as my period starts.  It is like a light switch gets flipped and I'm happy again and left wondering what the big deal was a couple of days ago.  Yeah, whack.  I know.

So now I have a problem.  How can I tell if I'm truly depressed or if it is just hormonal?  The randomness of my periods doesn't allow me to use the calendar as a warning system any longer.  I have so many mood swings because of my illness anyway that I am at a loss to figure out whether to take antidepressants or not.  I hate adding more meds to my regimen.  I hate taking antidepressants in general.  But this last meltdown was a doozie, a total sobfest on my shrink's couch on Wednesday.  I had no idea it was hormonal.  I'm probably going to try the antidepressants.  This emotional roller-coaster I'm on sucks.  I hate it just slightly more than I hate taking the meds.

I did feel better when I started my Paleo diet a year ago but I'm no longer sure if it was due to the food or the hope that it would "cure" my CFS.  While the diet has helped with symptoms, I'm obviously not over the CFS.  I've been cheating a lot but I don't know if that is due to my pissy mood of late.  Apparently carb cravings are part and parcel of depression.  After all, wheat acts as an opiate in the brain so it isn't too much of a stretch that it makes you feel better emotionally after you eat it.

BTW, yesterday morning I couldn't get out of bed.  In fact, I could barely move.  You know what I did... I ate sandwiches.  Yup, I had a carbolishous day!  Roast beef sandwich and fries, then a turkey club on sourdough with potato chips and a chocolate shake.  You know what.  I feel GREAT today!  I'm up.  I'm moving about.  I have a little bit of intestinal pain from all the bread but I got to shower and go grocery shopping and go out to eat with hubs.  And I'm happy!  So potatoes or prozac????  Or was it just the end of the Hormonal Apocalypse???

Monday, December 10, 2012

Run of Bad Luck

Well I'm in the middle of a fairly severe and lengthy crash.  I keep hoping it will lift but I fear the winter crash has started and is here to stay until spring.  Basically I have had a run of nasty luck.

I got over excited that my son moved back in and have been going out for breakfast, coffee and shopping trips way too frequently.  I have been enjoying his company so much I didn't want to rest when I knew I should have been.  He has cheered me up immensely and is a sheer pleasure to hang out with.

Then came Sandy and a second storm.  Both of which quite literally put me in bed.  Don't ask.  I have no idea why low pressure systems tank me but it happens to other CFSers as well.  In fact it rained most of November which meant no sunshine for me for the whole month.  NOT good.  I know sun exposure is crucial for my feeling better.  I'm going to have to try out the local tanning bed and see if that works the same way as sitting out in the actual sun does.

Then I got a huge lump in my mouth and had to have it surgically removed.  And two days later it became infected.  I had to take antibiotics that made me nauseous and gave me heartburn.  It made it really difficult to schedule taking those with my other meds and supplements and of course food.  So I spent a week sick to my stomach and underfed.  Brilliant.

I started new medicine for my never ending rash and herxed on it for several days.  I've been eating way too much wheat which the doc pointed out is probably contributing to the continued rash problem.  And I didn't make this connection why?  Oh yeah, the old brain isn't working much these days.

Hubs came home with some crud or other.  While I didn't get it I did crash even worse from the exposure.  It didn't help that he literally coughed in my face when I climbed in bed the first night he had it.  I ended up back in bed and sleeping from that.  I slept 14 hours the first day after exposure.  I could only stay awake a few hours at a time and I would have to go back to bed and sleep again.  This has continued for several days.  Today was the first day I managed to get through the entire day without sleeping for some chunk of it.

So I'm barely on my feet right now.  I'm back to super simple breakfasts of boiled eggs and toast (I don't have to stand there and cook) and dinners out of the crockpot or my son cooks.  I haven't been able to read. Very limited trips out of the house which has meant lots of canceled appointments.  Absolutely no driving.  Very limited walking.  I'm trying to keep it under 50' but that doesn't always work out particularly when my son is driving (he is terrible at parking).

I think the worst fallout from this last nosedive is the fact that I've gotten into misunderstandings and fights on facebook.  Between my being cranky and cantankerous and plain not being able to put two thoughts together to have an intelligent conversation, I haven't done so well in the communication department.   Not sure I'm going to be able to repair those loose friendships.  Might just have to chalk the loss up to lesson learned.  Stay off FB or at least keep quiet when I'm doing so stinky.

Okay, I have to stop writing since my brain is shutting down again and I still have some food and supplements to order online before I get to go to bed.  Night all!

Tuesday, December 4, 2012

Insurance Update

Quick update on the insurance situation.  I am now officially covered by Medicare Part A courtesy of the US gov and Medicare Part B&D courtesy of my former employer via Blue Cross Medex program.  The coverage is retroactive to Nov 1 so all my costs incurred over the last month are covered.

A few nice things that I have quickly discovered:

  • I seem to not have any copays.  Of course I might get billed later but no one has asked me for copays at time of service!
  • I do NOT need referals!  At all!  For anything!  As long as the doc takes Medicare I can go see them.  WOOHOO!!
My husband still has no health insurance coverage which means that my son also doesn't have any coverage.  My husband is inheriting my old coverage courtesy of my old employer (i.e. I got dropped off the policy and hubs became the subscriber) but they messed up his application form which means they haven't processed him yet.  

So far by refusing to deal with insurance for our family it has cost hubs $350 in meds and ~$100 in office visits. I'm not filing the paperwork for reimbursement when the coverage gets sorted out and I'm not calling to find out why they have no health insurance coverage.  This is a problem of his own doing and I'm going to let him get bit in the butt good and hard for this one.  I'm not being vindictive (well maybe I AM enjoying this a little too much) but I've had a horrible month, I'm still dealing with the aftermath of the "minor" surgery and phone calls and forms tire me out really really fast plus they are really really confusing.  He is a healthy, mentally capable adult and should put his man pants on and take care of this.  

Anyway, so far I think I like this Medicare thing.  It looks like the government gets things right once in a while :-)

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!

Wednesday, October 31, 2012


I learned an important lesson from drinking coffee today.

I stopped drinking coffee many many years ago even though I love the stuff.  I consider it nectar of the Gods.  However, it did weird stuff to my sleep.  Not the usual keep me up at night stuff but some kind of weird sleep disruption.  I slept but by the end of the week I was exhausted.  When I switched over to tea, even though it has caffeine  the problem completely went away so it must be some other chemical compound in it that was giving me problems.

Anyway, since discovering that my neuro symptoms improve for many many hours after drinking the stuff I have started my coffee habit again.  I was expecting the old fatigue problems to crop up but I'm on two different sleep meds now so I get a really good nights sleep no matter what I do to abuse my body during the day.  Of course I should be buying the Bullet Proof Coffee offered by the Bullet Proof Executive since it is organic, fair trade and mold free but silly me I'm going out to coffee shops with my son instead.  Way more fun that being politically correct.

Since starting up my coffee habit again I've noticed that it suppresses my apatite quite a bit.  My kid confirms this and he uses it for his breakfast meal so he doesn't have to deal with food in the morning.  Not healthy but he is old enough to know better and he does know better but does it anyway.  But I digress...  

So today we went out to Heavenly Donuts for our afternoon "beans" as my kid calls it and had a medium with lots of cream and a cheese danish.  I love cheese danish and this is the first one I've had for over three years.  I used to eat them once in a while at work and haven't had any since being sick with CFS.  And dang if that didn't taste awesome!  But I digress again...   So I had a medium coffee and danish around 4pm.  I had a cheese omelette at 1pm for lunch.  At 6pm I felt nauseous.  That blood sugar crashing nauseous.  That I have to eat real food right now or I'm gonna barf nauseous.  So why the sudden blood sugar crash?  I had eaten enough food spaced at reasonable amount of time for that not to occur.  So what gives?

I thought about it for a bit and realized that this has happened to me several times after having coffee.  I haven't quite figured out if it is just the coffee causing me to not eat enough food so I get nauseous instead of hungry or if it is the coffee sugar bomb (danish/donut/muffin) combo that is causing the problem.  The donut shop gives away free donuts with a cup of coffee after 2pm so donuts have reentered my life as well.  A little bit more observation should help now that I know what to look for.  Upon further consideration I think that I had better apatite signaling when I was a teatotaler than a coffee drinker. I haven't had the blood sugar crash upset tummy thing for many years unless it was brought on by meds.

So now the problem is how to integrate coffee back into my life without causing blood sugar problems.  Eating yogurt with my coffee instead of a sugar bomb would be a good start.

Tuesday, October 30, 2012

Goodbye Sandy!

I, my family, my cat, my house and my cars survived Sandy's onslaught.  I count myself as very very lucky.  We only had to deal with a one hour power outage.  No biggie.  I've also heard from my friends and my internet CFS/ME friends that were in the path of the storm and everyone is alive and well although a few are still without power.  Whew!

One thing that did surprise me with Sandy's arrival was the huge exacerbation of my symptoms.  Very suddenly as the barometric pressure dropped I felt like I was wearing a lead suit.  I didn't have the strength to hold myself up anymore.  I was stuck in bed semi-conscious for most of the storm.  By the time 3am rolled around (when I'm usually wide awake especially if I've spent part of the day in bed) I was dog tired again and had to go to bed early where I slept for another ten hours.  WTH!?!

Today I'm a bit better but not as mobile or full of pep as usual and have spent most of the day stuck on the couch.  An improvement over yesterday but still not great.  Today I'm still in Sandy's tail and have been watching the weather vacillate between clear skies and torrential downpours and outright nasty thunderstorms.  My body aches all over.

It will soon be over.  I have one more day of Sandy to go.  Then clear skies and sunshine.  I'm looking forward to sunbathing on Friday and hoping that will help.

I must say I wasn't prepared for my body being slammed so hard by the storm.  I can't say it was the prep work since I couldn't do any.  I didn't even do my usual grocery runs prior to the storm since we had so much left over from the prior weekend.  I didn't even need milk.  I went into the storm well rested but noticed that I lacked energy several days before she hit.  Dr. Klimas has studied this phenomena in CFS/ME patients and it is very real.  However, they haven't really figured out why.  I'm not sure it happens to all of us either since one of my CFS buddies was in the direct path of the storm and she seems to be doing okay.

This illness is just one huge mystery.   I am just happy that everyone and everything is okay.  It could have gone so much worse.

Monday, October 29, 2012

Hello Sandy!

Prepping for a potential disaster is a lot of work when you are well.  Having CFS makes it damn near impossible.  I am totally dependent upon my husband and son to do all the work.  Hubs put all the yard stuff away.  Luckily we already had tons of food in the house and gas for the grill if the power goes out.  Although BBQing during a hurricane doesn't sound like too much fun.  The one thing that fell through the cracks was the refill on my sleep meds.  Yup, I ran out.  We're crossing our fingers that my regular pharmacy is open tomorrow morning otherwise it is going to be a rough couple of nights.  Luckily it isn't anything more serious.

I'm not in the direct path.  Fortunately we are much further north.  Our biggest problem is going to be high winds.  We aren't even getting that much rain, only 2" predicted.  I am also fortunate to live in a town with a municipal light department which means we aren't dependent on National Grid or NStar for service.  Woohoo!!  If we do loose power it will only be for a few hours rather than days.

Hubs has the day off work and kid's school is canceled so we get to drive each other nuts tomorrow. Particularly if the power goes out and we will be forced to entertain each other.  Maybe I'll just sleep all day.

Wednesday, October 24, 2012


Warning: Profanity laced rant enclosed.

Hubs:  Our upload speed is 1/6 of our download speed for the internet.
Me: Yup.  It is very typical for the provider to have a much slower upload speed than download speed.
Hubs: But it is more than one half.  Could that be why the delay is occurring during my online gaming?
Me: Yes.  It certainly is.  You need to get the original contract and see what they promised you.  People have sued them in the past for breach of contract for not providing the services as stated.
Hubs (with enthusiasm): I'll get right on that.  I'm calling them tomorrow and get this fixed.
Me (to his receding back): You might want to look at the Medicare info instead.  It is a bit more important than whether you can shoot at zombies before getting killed.
(long delay: I go back to internet surfing)
Hubs (returns to room): I've got an idea, why don't you call them?
Me: I can't.
Hubs: Why not?  Just get a list of questions together and have them explain it to you.
Me: I can't.  It doesn't work that way.  The booklets explain everything I just can't read them or absorb the information.
Hubs: So hire someone to!  Get a lawyer to do it for you.
Me: It isn't a lawyer problem.  It is our health care.  We need to figure out what plans that we need and I can't do that.
Hubs (really agitated): I don't want to.  I already do the laundry, the garbage, the dishes...
Me (cutting him off): I know you do and I appreciate that but I just can't do this.  I can't read it.  I can't understand the information.  It is too much and too complicated.
Hubs (really pissed off): I don't want to do it.  (storms off)

So now what?  My insurance policy covers my entire family.  I'm getting pushed onto Medicare by the long term disability company.  This isn't supposed to happen until Dec1st but the last letter I got from the gov says it starts Nov1st.  I have no idea if my family will have no coverage in a week and a half.  I told hubs he needed to take care of this when the booklets started arriving in the mail months ago.  I told him I couldn't do this.  That I can't understand it.  He has ignored it.

What am I supposed to do when someone refuses to help me.  I mean flat out refuses and he is supposed to be my go to person.  My fucking SPOUSE who is supposed to be my partner and helper is refusing to help with something that is critical to not just me but the whole family!!  What do I say to people?  Hi, you barely know me but can you help me figure out my Medicare because my husband is refusing to have anything to do with this?  Yes, I know it is vital to my continued health care, access to doctors and prescription medications.  Yes, I know my child and husband will be affected by the changes.  No, he is refusing to help and I can't read or make sense of this.

So, he cares more about the fucking internet speed for his online gaming than health insurance for his family.  How does that make me feel?  A burden.  Useless.  Unloved.  Unimportant.    I am SO VERY ANGRY right now.  I cried a lot but it didn't help at all.  I'm really ANGRY.  FURIOUS.  Rip someone's head off angry.

I'm going to have to ask for help from my teenage son.  He shouldn't be doing this.  I hate asking but I can't think of anyone I can ask for help from.  Who is supposed to step in when a spouse won't help with something as fundamental as health care insurance?  My brother?  My sister?  They have crap of their own to take care of.  What is hubs doing?  Shooting zombies!!  What the FUCK is wrong with this picture!?!

Monday, October 22, 2012

Cooke's Skate Shop

Most days I'm okay and even happy even though I have this unrelenting illness.  I get up, do what I can to help out, rest a lot, cook a simple meal, visit doctors and sleep.  I kiss my husband and listen to his stories.  I sit in the yard and watch the clouds and the bugs.  That is about the extent of my days.

Every once in a while something sneaks up on me and upsets my domestic bliss.  This time it was a receipt.  In preparation for my upcoming disability claim review I'm already sorting papers.  I'm giving myself several months because I can only work on it sporadically and only for short bursts of time.  Two days ago I was sorting through old receipts looking for slips from the pharmacy for all the meds I take.  Since I haven't sorted receipts since before I got sick there were several years worth to go through.  Most of them were from the supermarket (I save and then destroy them since I use a credit card to pay: call me paranoid but both hubs and I have had our cards cloned).  I was almost done.  I was nearing the bottom of the shoe box when I found it.  A receipt from Cooke's Skate Shop for some minor work I had done to repair my figure skates a couple of months before I got sick.  Then it hit me.  That overwhelming grief.  The deluge of tears.  That yearning to be normal again   The desire for my old life.  The hatred of my illness and all the things it has robbed me of.  I cried.  I wept.  I wailed.  My cat looked at me funny.  As fast as it had snuck up on me, it was gone.  My tears dried up and I went back to sorting receipts.  Within the hour and one last wistful glance I ran the receipt through the shredder.

For some reason figure skating does that to me like nothing else can.  The last major moment of grief and tears occurred when I found out that the 2014 Adult National Figure Skating Competition is going to be held in my home state.  The big goal I had when I started figure skating again was competing at adult nationals and here it was coming to my backyard and I am stuck in the house with CFS.  Even if by some miracle of God I was instantly cured I probably wouldn't be able to compete since it had taken me two years to even get close to qualifying and now I have the muscle tone of a limp noodle and would have to start from scratch.  Again, I cried.  I wailed.  I soaked hubs' shirt with tears.  Then I got over it and carried on.

It has taken two years but I can finally watch figure skating on television again, well actually the internet since they have crappy TV coverage.  For the first year I couldn't watch it at all.  Then, last year, only if I was in the right mood.  Now I can finally enjoy watching it.  I miss it terribly.  I've had dreams/nightmares about being on the ice.  Most of them had me trying to skate in tiny spaces or jumping over obstacles   There were always barriers in my way of skating freely and fast.  I miss it.  I miss it terribly.  And if I let myself, I would pine for it.  It is something I have to ignore for now.  Stuff it down and hope that someday I'll be able to skate again.  Even if it is just figures.  Just to be able to walk into the rink to visit my coach and friends would make me happy.

Grief is part of this illness.  We never know if we will be among the chosen few who will recover.  I hope I am.  But in the meantime I'll have a few crying jags when skating sneaks back into my life and blindsides me.

Wednesday, October 17, 2012

Return to "Normal"

I'm very happy to report I'm returning back to baseline.  I made sure I had no appointments after vacation so I could rest.  I'm sleeping in every morning and lying down in the afternoons.

I'm not totally back to my good level of functioning (I still can't read books) but I drove today.  With the radio on!  That is a first in over a year.  Whenever I've driven this past year I've had to turn off the radio due to it being too much stimulus for my poor brain.  I found it distracting and frazzled my nerves.  Today it was sunny, I had the window rolled down and the tunes on.  I felt normal.  The most normal I've felt since last fall.

I love pretending that I'm not sick when these moments strike even though I know they are fleeting.  I'll crash in a few minutes or an hour but in those few precious minutes I'm normal.  I can make pretend I will get better.  I can pretend I can shop, travel and have a life like a normal person.  It is such a glorious feeling.  Of course I had to lie down in the quiet and close my eyes when I got home but the trip home was wonderful and delicious and normal.

Monday, October 15, 2012

A Little Vacation

Lobster Pot, Lobster Pound, Lobster Claw, Lobster Pit, Lobster Shack, Lobster Shanty, Lobster & Clam Bar, The Laughin' Lobstah.  These are names of real restaurants I passed while driving around Cape Cod on a little vacation this past week.  Being slightly warped I started collecting names of lobster places even though I hate lobster.  (I prefer my fish served without the legs and eyes still attached.)  I couldn't get over the sheer number of lobster joints down there.  You would think that is the only type of food available.

Before I went on vacation, I was really worried about crashing.  Crashing from the drive.  Crashing from the activity.  Crashing from the new sleeping accommodations   You name it, I was worrying about it.  Including worrying that hubs would have an awful time from taking me on a trip where I couldn't participate in activities.  This is my first vacation since contracting CFS/ME so I had no idea what to expect and after the horrible reaction to the trip to York ME I was seriously stressing over things.

Now, one odd thing I've noticed and been playing with is the use of coffee for car trips.  It appears that if I drink coffee right before a car trip I have a less adverse neurological reaction to the trip.  Maybe it has to do with the blood vessel expansion keeping blood circulating in my head but that is a sheer guess on my part.  So before I set foot in the car I drank a large cup of coffee.  This seemed to work.  I would still have a degradation of my neurological function during the trip but it wasn't as severe and it decreased my recovery time.  This delighted me to no end since it meant I could legitimize drinking my favorite beverage again.

Another thing we did was stay at a resort with an ADA room (outfitted for persons with disabilities) .  This meant really comfy accommodations so that it was pleasant to stay in the room during rest times.  It was also really nice grounds so hubs could go walking while I was resting.  He took several long walks on the beach while I was snoozing.  Having an ADA room also meant that I was safe in the shower since it had grab bars and a shower seat and a handheld shower head.  I still can't stand while showering so this was great.

We kept the day trips short with lots of stops so it wasn't continuous driving which kept my neuro symptoms down.  We also looked for restaurants that served real food so we weren't eating junk.

Oh and National Parks are the bomb for people with disabilities.  They are very handicapped friendly.  There are ramps and all sorts of special access for people in wheelchairs such as mats on the beach and dunes.

We had a great time.
I got to rest when I needed to in a really nice room.
We stopped at many beaches and lighthouses.
Thanks to the National Park Service, I got to sit on the beach in my wheelchair with a kite tied to my armrest while hubs took a walk.  I got to listen to the surf, watch the gulls and clouds and get really strange looks from the tourists.
I got to eat lots of yummy food including the best fish and chips I've had in many years.
I got  to visit the  house where I grew up.  It is way tinier than I remember and the tree I used to climb as a kid is now gone.  Bummer.  Other than the tree it is just the same.
I got to visit the new ice skating rink that replaced the one where my parents worked and I learned how to speed skate.
Hubs got to walk around a nice place while I was resting.
I bought a new ring to replace my wedding band that no longer fits (I don't want to cut my antique band since I'm planning on loosing weight once I'm doing better).
We drove far more than I thought possible and covered way more miles than I thought I could tolerate.
I got to drink lots of coffee!  And even had some handcut donuts with it.
We visited monuments and drove through the dunes.
And after three days home I'm writing again.  This is miraculous.  I'm so happy!

So here is to resorts, coffee and National Parks!  Love you guys!

You wouldn't think going on vacation is legitimate when all I do is sit around the house but the change of scenery and pace has done wonders for my mood.  If you can tolerate it and plan for the CFS/ME weirdness then I highly recommend it.

Saturday, October 6, 2012

"Life is Good"

I don't know if this is from something I saw on TV or in a movie or if I read it somewhere.  The author/main character was searching for the meaning of happiness and sat down next to a homeless man in a park.  They got to discussing the philosophy of life and the homeless man said something along the lines of "Life is good when you can eat, sleep and poop."  I tend to agree.  It really is that simple.  If any one of these gets out of whack it is sheer misery.

Doing better today.  The plumbing isn't quite working properly yet but things are moving along.  I seem to have lost my appetite today.  To tell you the truth I'm kind of scared to eat solid food.  I'm worried it will get stuck again.  So today was a diet of yogurt, prunes, fermented cod liver oil, butter oil, coconut oil and homemade chicken soup with very overcooked rice.  I even had lots of tea and coffee.  Coffee always gets things moving.  So I'm still in pain but not as much.  I'm tired from the ordeal and don't feel quite right.

I managed to get out in the sun today finally after a week of rain.  The lack of sun exposure isn't helping things at all.  I also had my glutathione IV today.  So I'm hoping that my energy levels will bump up tomorrow.  Hopefully my guts will start behaving themselves.  I'll take the trots over this any day.  Ugh.

Friday, October 5, 2012

Sick Humor

Oh yeah!!

Bentonite Clay

I think the clay has come to the end of its usefulness in me.  The last two times I've used it is has clogged up my plumbing something fierce.  Today was the worst.  I have never had so much trouble pooping in my entire life and that includes after major surgeries.  UGH!!

After lots of water and chewing on prunes things are working again.  No more clay though.  I'll switch over to activated charcoal instead and monitor myself for any problems.  It is tricky since the effect doesn't happen until 24 hours or so after ingested.  If I do start clay again, it will be at half dose and chased by tons of water and prunes.

Of course if I behaved and stopped eating grains again, I wouldn't need the clay and charcoal.  Time to get back on Paleo/Primal.  I've convinced hubs and kid to do the Paleo Whole 30 with me.   I have to count back from Thanksgiving and squeeze it in before the holiday.  Kid said to make Tday Paleo but then I reminded him that meant no dinner rolls and no stuffing.  He didn't like that idea much.

Saturday, September 29, 2012

The Big Carb Experiment

I've been wanting to write this for a while but my keyboard keeps crapping out on me.  So here we go....

Since eating that amazingly yummy pizza I've been experimenting with various carbs.  So far donuts, pizza, pasta, white bread, wheat bread, flour tortillas, English muffins and rice have all been tried.  Rice of any sort seems to be fine.  Corn can be dicey.  I haven't eaten it enough to figure out if I'm fine with organic and it is just the GMO corn that is giving me problems.   Wouldn't surprise me since I've had serious problems with breakfast cereals with GMOs in them before (yes I ended up at the hospital with an ultrasonic transducer up my hoohoo after eating breakfast cereal: the indignity of it all!)  Donuts are a problem as is pasta and even the pizza.  A few pieces of toast or an English muffin seem to be fine.  Regular bread is pumped so full of air I'm thinking it is just a quantity issue.  I'm fine with small amounts but larger doses cause problems.

Skip this bit if you don't want to read the gory details...
Basically it involves lots of burping for about 24 hours, bringing up stomach acid when I lie down (truly painful and results in a swollen throat for several days afterwards not to mention really nasty tasting), and then intestinal cramps until I can eliminate the offending mass.

I've used both activated charcoal and bentonite clay to help with eliminating the toxins out of my system faster after eating carbs.  But it really comes down to behaving myself.  I can have toast once in a while but I have to stay away from pasta dinners even if they are the most delicious thing on the planet (I had pasta and shrimp in a cream sauce that was gastronomic heaven!).

So back to my Primal diet with some rice thrown in on the side.

Talk to you again when my keyboard works again.

Monday, September 24, 2012

Sick Humor

Second New Post

I'm recovering.  It has been slower than I thought but I pushed way too far last Sunday.  The car ride was too much.  A few things would have helped: traveling in my car instead of the '57 Chevy, staying overnight to break the trip up and not having appointments to go to as soon as I got back.  Those three things conspired against me and brought me down way further than I care to go.  The short stay up there, only a few hours, was not worth the crash that followed.  Today is the first day I've made it through the entire day without needing to lie down and rest/sleep/pass out and the first day that I didn't need my walker at some point.  So things are improving.  I made breakfast and dinner today.  A major accomplishment even if they were simple meals.  I've managed to lie out in the sun several days this week.  Recovery takes time and patience.  I'm still not back to pretrip levels but I managed to function all day today.  Woohoo!!

I had several really good moments today.  Hubs took me for a long walk around the neighborhood.  He has never EVER done this before.  He always told me that pushing my wheelchair makes his back hurt.  I figured he would only push me around the block but he went down side roads and went back and forth up and down the street several times.  With the warm sun it was delightful seeing the flowers in the neighbor's yards.  My son even joined us for part of the trip and we talked politics for a while.  Much fun.

I also got to watch the bees today.  They have switched from my catmint to the Autum Joy sedum as the plant du jour.  The plants attract very different pollinators and I want to learn the different types of bees.  If I never had CFS, I would have never learned this never mind seeing this for myself.  Even the bluebottle flies like wandering around the plant heads.  It is pretty amazing watching all the bugs in my garden.  The variety of life and the fact that I am moving slow enough now to see it.  It is fascinating and makes me want to learn more.

I am hoping to recover enough that hubs and I can go away for a short vacation of a few days.  He has agreed that we shouldn't be stingy for the lodging so I'm voting for someplace nice since I'll be stuck in bed/on the couch/on the deck/on the beach for at least the first day that we are there.  I also need a handicapped room so that we can use the wheelchair to get me around the facility.  I still can't do stairs.   I'm looking forward to getting away for a few days.   I now have to decide if I want to go back to Maine or to Cape Cod instead.

Wednesday, September 19, 2012

New Post

I'm still messed up so bear with me....

Went for a drive to York ME on Sunday.  Hubs wanted to go in his 57 Chevy, a car he just finished restoring.  It is a gorgeous car.  He did a fantastic job on it.  He built it for us to go driving in.  He loves driving it.  No that doesn't do it justice...  He LOVES driving it!!!!!

Now you have me with pretty bad neuro symptoms for CFS.  I have daily problems with concentration, memory, attention span... oohh shiny!   You get the idea.  On bad days I can't walk or talk it gets that bad.  Riding in cars makes me worse.  Riding in noisy bumpy cars makes me exponentially worse.  

Hubs wanted to spend the day with me driving in his fancy restored car so off we went on an 160mile round trip drive in a loud bumpy car.  It was a perfect fall day in New England.  Sunny.  Dry.  In the seventies.  By the time we got to York I was a little messed up but we had my wheelchair so he pushed me around.  We had lunch.  We ate ice cream.  We watched the surfers. We watched a beach wedding.  As soon as we got back on the highway for the trip home I was out.  With CFS I'm never quite sure if I'm actually sleeping or gone comatose.  I would love to have someone do a brain-scan when I shut down like that.  Anyway, I slept/passed out for most of the trip home.  I woke up suddenly.  We were near our house but still on the highway.  I had a panic attack.  I never have panic attacks.  I wanted to jump out of the car.  Right then.  Home couldn't come fast enough.  I talked myself down from it since I knew I wasn't in any real danger.  I was just freaked out.  By what I have NO idea.

We pulled in the driveway and I could barely walk.  I couldn't talk at all.  Hubs got me upright and into the house.  He disappeared so using furniture and walls I made my way into the bedroom where I literally collapsed in bed.  He covered me in a blanket and I woke up 2 hours later in the same position.  I spent the rest of the evening using my walker to get around the house, using slurred speech and truncated sentences to communicate.

Yesterday I spent on the couch.  My kid had to cook for me.  I had no strength in my limbs.  All I could do was watch TV shows.  It was all I could manage.

Today I had a doctor's appointment.  I put my papers together as soon as I got up.  I always take a list of meds, a list of supplements and a list of symptoms and activities with me to give to him.  This time I also took info regarding tricyclic antidepressants so that I can start anti anxiety meds and the oxygen therapy info from Dr Cheney.  I made myself eggs for breakfast and took a shower.  I knew I was in trouble even before I walked out the house.  My brain was slowing down.  My pace was slowing.  My brain processing speed was slowing.  By the time I got to the docs I was back in nonverbal mode.  Luckily hubs was there to answer questions for me until I recovered enough to hold a somewhat decent conversation.  I still sounded like I was drunk/high or really stupid.

Strangely enough the appointment went really well.  Hubs was a great help.  And it was really good that my primary saw me that screwed up.   I have disability forms to fill out again soon so having him visually confirm that I'm that messed up that I can't possibly work is a good thing.  I also found out that he had no idea that I used the walker in my house to get around on my bad days.  Hubs injected that car rides to the market often caused me to have to use the walker when I get in later.  Doc was surprised that I went to the market and I had to explain that someone drives me and then pushes me around in the wheelchair.

Anyway, I'm seeing my shrink tomorrow to talk about the tricyclics.  I'll probably start something.  My skin rash has spread all over the place.  A different form of it is now on my open skin on the top of my leg so it is no longer confined to the cracks and folds of my body.  Ugh.  I hate this.  He doesn't want to put me on the pills yet either since they do nasty things to the liver.  So lots of cream must me applied.

I have to stop writing now.  My brain is shutting down again.  See ya later!

Tuesday, September 11, 2012


I've been really bad about writing lately and I'm going to blame it on my keyboard.  Gremlins have gotten into it and it now only works intermittently.  Welcome to the wacky world of wireless comm. and yes I've replaced the batteries.  Several times in fact.  And moved the receiver.  Like I said this is an intermittent problem which means everything works.  Sort of.

Anyway, I'm going to write a post while I can.

Now, everything I've been reading for the last year had me convinced that Paleo was the way to go for some improvement in my symptoms.  I went hardcore Paleo (except my raw dairy) last September for one month.  Yup.  No grains or tubers for an entire month.  Drove my hubs nutty.  I reintroduced rice and then sprouted spelt in small amounts in October followed by white potatoes a short time later.  In addition to Paleo, I added fermented foods, bone broth, gelatin, grass fed cows, grass fed animal fats and lots of sea salt back into my diet in order to aid in gut healing and to add back in nutrients that I've probably been missing for years on my low fat, low salt, whole grain "healthy" diet I've been on for the last 20+ years.  Things went well.  By December I was walking around really well on my own for longer distances.  I was still hampered by significant brain fog but I was able to cook, do light house cleaning, tidy up a bit and occasionally read for short periods.  Woohoo!!

In January I relapsed.  I got steadily worse until I was stuck in bed for most of the day doing only the simplest of cooking.  I canceled all of my appointments for about two months.  It was just too much for me to go out of the house and it would make me worse so I saw no real benefit from it.

This year, I've been doing a so so job with my diet.  It is better than it was last summer but I was definitely more strict last fall.  I've slacked off with the vegetable and fruit consumption.  And I haven't had any ferments of any kind in several months.  I've also slacked off on juicing and making smoothies with whey protein.  Part of it is that I'm just not that hungry this year.  Now that I'm off the steroids my appetite has plummeted.  I have to remind myself to eat my third meal even though it usually consists of a piece of fruit, a bit of cheese and a few nuts.  I'm no longer snacking at all.

Then a few weeks ago I got sick.  It was a weird one and I'm not entirely sure if it was a virus or just a new incarnation of the CFS.  I had a severe headache for 7 days that escalated into an ice pick migraine on five of those days.  And plumbing issues that I'm not going into detail.  During that time I stopped all dairy and didn't have much of an appetite.  I was eating eggs for breakfast and whatever meat and side I made for dinner.  So for over a week I was essentially eating nothing but protein.  After the headaches and tummy issues resolved I still felt terrible.  Not unusual for me.  CFS usually means a crash during and after a viral illness.  But this just wasn't resolving.  A week then two weeks went by and I still felt like crap.  And when I feel like crap I don't cook full meals.  I was still eating eggs, meat and a side.  Maybe a piece of fruit now and again.

Now eating Paleo isn't about eating straight meat.  After lots of reading last year, I decided on a diet of 50% fat, 25% carbs and 25% protein.  I spent several weeks plugging all my food into an online tracker and found out I was hitting my target with my regular Primal diet.  I was consuming between 1600-2000 calories a day with the correct ratios of carbs to fats to proteins.  I discovered that the calorie heavy days occurred when I included rice which also skewed my ratios.  I found that I got all the carbs I needed from my fruits and vegetables and nuts that I was consuming and I really didn't need the rice or potatoes in my diet for the numbers to work out correctly.

Ah but reality doesn't always agree with the numbers does it....

During my illness I ended up with a protein heavy diet with a bit of fat and almost no carbs in it.  Then one day hubs wanted a pizza.  A real honest to god pizza.  And I went "f*** it", me too.  I haven't eaten a real one in years due to a wheat intolerance.  I love pizza.  I always have.  So I threw caution to the wind and we devoured a large mushroom and onion cheese pizza and a salad between us.  And it was good!

A few hours later when I expected the belly ache and heartburn to kick in quite the opposite happened.  I felt better.  I felt much better.  I felt better than I had since I had been sick.  I must have needed the carbs.  Even though they weren't organic.  Even though it was full of wheat (I even ate the crusts).  Even though it was the polar opposite of Paleo.  I felt better.  I needed the carbs.  Apparently I needed a lot of carbs.

So now I'm in a quandary.  Last year getting rid of grains made me feel better and now eating them made me feel better.  What is right?

I have to trust my body.  Things are changing.  I know I am no longer intolerant of wheat.  I ate the entire half of a pizza with only minor intestinal discomfort the next day.  Normally this would have caused heartburn, intestinal cramps, severe brain fog, severe fatigue and pretty bad IBS.  So my guts have healed.  Apparently a lot.  I love pizza, sandwiches and donuts but I know they are full of crappy chemicals and GMOs.  So I guess I'm compromising.  I'll do Primal most of the time but I can have the occasional sandwich or pizza or donut.  These will not be a regular part of my diet.

Also, I have to do a better job of balancing my diet when I feel bad.  I can't just eat protein and nothing else.  I need fruits.  I need vegetables.  And I need the occasional carb.  I also need to add ferments, cultures and raw dairy back in.  So I started my evening large glass of raw milk again.  I've bought some sprouted spelt bread to eat with one egg for breakfast.  And I've added a large tomato slice to my egg breakfast.  I'm going to go back to eating my fruit, cheese and nut plate for my third meal.  And I'm eating fruit for dessert after a smaller dinner.

I'm still not eating as much as before I was sick but at least it is back in balance again.  And what a shock about the pizza!!  Who knew pizza would make me feel better!!!  Maybe it isn't the total evil that the Paleo community makes it out to be.  Or maybe our bodies are just that wonderful that we can eat a wider range of foods than we think we can once we manage to heal ourselves.  What ever the reason it is a cause to celebrate!!   I can eat pizza again!  I've managed to heal my guts somewhat. I'm bummed about the CFS still being pretty crappy but I'm healing other parts of me and I am going to continue that journey.  As long as I eat more ferments, bone broths and vegetables, I will be able to enjoy a pizza once in a while and that is a wonderful thing!

Thursday, September 6, 2012

The Egg or The Chicken

Had a long talk with my shrink today.  At our last meeting he suggested that I go on meds to "even out your mood swings."

I told him about my abysmal record with anti-depressants.  The only one I've done well on is Prozac and that was over 20 years ago.  I've tried many of the new ones.  I had side effects to most other SSRI class drugs and that was BEFORE CFS.  I had a severe reaction to SNRI class drugs that were proscribed in low dose for pain use after I contracted CFS so those are totally out of the question.

Of course I was told by Dr. Komaroff that anything that acts on the central nervous system wreaks havoc with CFS patients so I'm loath to even try the Prozac.  I would have to start out on the lowest dose they make and maybe even mix it into juice and only drink half.  I would also have to be monitored closely for side effects of any sort.

Aside from the drugs themselves, we also talked about why I would be taking them.  I told him that it made me feel like my sadness, my grief wasn't legitimate.  That it wasn't right to feel this way.  That it needed to be wiped out by the drugs.  He gave me an excellent list of things to consider:

Is the sadness overwhelming?
Does it interfere with everyday life?
Is it persistent?
Can I tolerate the sadness?

My sadness comes and goes.  It isn't persistent.  I cry more often in his office than outside so his perception is a bit skewed.  I generally have triggers for the sadness such as watching the Olympics (people doing things I used to do such as swimming or running)  or digging my ice skates out of the closet.  I cry.  I get most of it out of my system.  I go on with life.  I get annoyed that I'm still sick.  I get angry at not being able to do stuff.  I grieve for the life I've lost.  But most of my days I'm okay.  Most days I can function within the boundaries of CFS.

I also realized that I can't really untangle the CFS from the sadness. I don't know if I wake up feeling crappy because of the CFS or because I'm sad at being sick.  The proverbial chicken and egg problem.

I know what would absolutely improve my mood: BEING ABLE TO DO STUFF!!  If i could get a drug that cured CFS I wouldn't have to take any prozac!

Saturday, August 25, 2012

Weird S**t O' Meter

This one definitely pegs the Weird Shit O'meter:

In short it is a new treatment for autoimmune illness that involves swallowing porcine parasite eggs every two weeks for 12 weeks.  Apparently it makes the body stop attacking itself.  The research is being done at Tufts and the company is couple of towns over from me in Burlington MA.  

Right now they are only testing it on Crone's patients.  If it works I can see them trying this out for other illnesses.  Not sure if they will ever get to us CFSers.  I did talk to one guy from Australia that got a fecal transplant that didn't help but that is a single data point.

Sicko Update

Labs came back normal except for my inflammation markers.  I've been too sick to dig out my old ones so I have no idea if they are more elevated than normal for me.

I was doing pretty good yesterday but spent almost all day today sleeping and resting.  It is like my limbs are made of lead.  I just don't have the energy to move them.  Ugh.  At least my head doesn't hurt anymore.

Tuesday, August 21, 2012


I caught some weird virus and the CFS has just made things worse and confusing.  The worst part of this illness has been the nasty headache that lasted a week along with an ice pick migraine that lasted five days.  I've had other strange symptoms including back pain around my kidneys, sweats while being hot and cold at the same time, no fever at all, plumbing issues and really swollen and sore lymph nodes.  I looked like a chipmunk who just raided the birdfeeder.  The pain was the worst part.  I've been sleeping lots and having really strange dreams.  Probably due to being hopped up on caffeine and pain killers and not eating.

I did get to the nurse practitioner today.  My regular doc is on vacation and I'm not going to a sub who doesn't know diddly squat about CFS.  I called my CFS doc who was busy but I got in to see his nurse.  She was upset but I had the excuse that my CFS doc wanted me to let him know if I caught a virus since he might have to put me back on steroids since my immune system is all messed up.

I gave another five vials of blood to the cause and three throat swabs.  Ugh.  My throat is still killing me from that.  The nurse had me close my eyes while she did a sneak attack on my throat since I have such a wicked gag reflex.  I coughed all over her.  I felt so bad.  Here I am with God knows what and I'm coughing all over her.  I couldn't help it.

So now I wait.  It will be several days but I'm having CBC, CRP, sed rate and white blood cell counts done along with viral and bacterial cultures.  I'm looking forward to seeing how things have changed.

Wednesday, August 15, 2012


I hit a milestone today with my CFS.  I've been sick for 27 months, basically couch bound for two years come October.  This past week I've been walking short distances unassisted.  I'm a poor judge of distance but probably 50-100ft or so.  This means walking with no walker and no hanging on the arm of someone or hanging on to furniture or walls for balance.

But today, TODAY, I actually had the urge to stretch my legs.  I had the urge to walk to get a little exercise.  I wanted to feel the movement.  I wanted to get the blood flowing and the cobwebs out.  I had the urge to exercise.  So I made my husband leave my wheelchair in the car, walked into the restaurant on my own, talked to the hostess myself (I'm usually below counter level in my wheelchair so they talk to hubs instead of me), walked to the table unassisted and, after dinner, walked out to the car with my fingers laced in hubs' hand instead of clinging to his arm for dear life.

I don't know if I'll crash tomorrow.  We'll see.  My little walking adventure last week caused a four day crash where my legs were too week to keep me standing up.

No matter.  Today was a milestone for me.  I haven't had that urge to exercise for over two years.  That urge to move.  I'm not talking about desire.  I've had the desire to move, skate, swim, walk, hike, run, drive, etc.  Heck, I spent a lot of time crying when watching the Olympics.  I wanted to swim in the damn pool with Michael Phelps!  But today was different.  Today it wasn't my head wanting to move, it was my body.  My body wanted me to walk around.  I used to get like this when I hadn't been on the ice for several days.  I would get antsy and have this drive to get the energy out of my system.  Today was the first time I can remember it happening since I came down with CFS.

Maybe this is my turning point.  Maybe this is the start of the real road to recovery.  I have to wait until tomorrow to find out if I survived this minor miracle or if CFS is going to yet again kick me in the butt.  Patience.  Patience.

Sick Humor

Sunday, August 12, 2012

Rubbing Salt in the Wound

Well on top of my horrible week I just got some more crappy news: in 2014 the Adult National Skating competition is being held on Cape Cod which is roughly two hours away from me.  Why is this crappy news?  The whole reason I got into testing and competing in the adult track of USFS (United States Figure Skating) was that I wanted to compete at Nationals.  I was in the middle of my first competitive season when I came down with CFS.  I had one more test to take to qualify for Nationals.  I had already passed three tests and received two medals in competition.  Since the competition is so close several of my old skating buddies will probably go to compete.  If I am lucky, very lucky, I will get to go and watch.  I've been crying for days over this.  It is just one more thing to grieve for.  I HATE YOU CFS!!!!!

Thursday, August 9, 2012

To Drug or Not To Drug. That is the Question.

Sorry Shakespeare.  I just couldn't resist.

Bad week here in this chronic chick's house.  The tumble I took the other week has reactivated the fibro pain in my back.  I've had a tough two weeks moving around and sleeping due to pain in my spine and the surrounding tissues.  I always get cranky and out of sorts when I can't sleep enough.

To add to the not enough sleep problem the neighbor has been tying their dog up to the tree outside my bedroom window and letting it bark.  This happens at all times of the day and night, 8am, noon, 1:30am.  Doesn't matter.  They are too lazy to walk it so they just put it outside where it barks the entire time.  I got woken up twice this morning.  I want to shoot it and I like animals.

I also sat on my damaged ankle wrong the other night and crunched several bones.  Since then it has swollen up again and just aches all the time.  It often hurts to put weight on it but not constantly. I can hardly wait for my chiropractor to readjust it and get it working right again.  That is tomorrow.

I also got a call from the CDC to do a telephone survey.  Cool, I thought.  I can tell them all about CFS etc.  But no!  It was a survey on sexual harassment, sexual abuse and domestic violence over the entire course of my 50 year life.  Man did that dredge up some unpleasant memories.  I swear as a woman in the US you can't live out your entire life without getting at least harassed if not actually felt up or raped at some point in your life.  It sucks but there it is.  Yes, I have been felt up on more than one occasion, the first time when I was just 7.  When I was older, I was pawed at by high school boys and coerced by boyfriends that had only their penis on the agenda.  My sister and I chased off a peeping tom when I was in my 20s and we think it was probably my own dad.  I've had coworkers both feel me up and threaten me in a sexual way when I worked as an automechanic.  I even had a customer wave money in my face and proposition me for sex.  The manager threw him out.  And even in a research setting I was told that I had no right to free thinking since I was a female.  I was told that my husband should think for me and had "Why a Woman Can't be More Like a Man" played over and over again in the lab.  "Just for fun" of course.  And, even now, I've been in a few uncomfortable situations with hubs since getting ill and this is from someone that has been an awesome spouse for 20 years and a great boyfriend 4 years prior to that.  Not the most pleasant of phone conversations.

Also, my Mum has been quite sick.  This on the eve of her 80th birthday.  She never gets sick so we were quite worried about her since she had a odd set of symptoms.  It took the doc a couple of tries to figure this one out since it is a fairly rare disorder.  She is on the mend though.  Once the doc figured it out they got her on the right meds and she is much improved.

Well her treatment actually triggered some anger in myself over my own CFS treatment.  You see the illness she has requires low dose prednisone to tamp down the inflammation in her blood vessels.  Last year, I had a cortisone shot in my shoulder for an unrelated condition.  The cortisone stays in my system for about 30 days.  It is supposed to last longer but in me it doesn't.  Anyway, while the stuff was hanging out in my body making my shoulder work properly, all and I mean ALL of my CFS symptoms calmed down.  I was driving, reading, cooking, walking, shopping, etc.  When the month was up I returned to my bedridden self.  When I told my ortho guy about the reaction he told me that my doc could prescribe low dose prednisone for the CFS.  Of course, when I talked to my doc he said no.  It was too dangerous.  I've been on prednisone before and had no adverse reactions to it but of course that was short term.  So on the way home yesterday from my ortho followup for my knee I broke down and had my first cry.  Why can't I get prednisone?  Why does my illness have no treatment?  My life sucks!!  I want a drug that will help with my symptoms and at this point I'm not too fussy about danger.  I'm just supposed to hang around the house hoping this will resolve when I know a drug is out there and available but my doc is too chicken to give it a go??  WTF!?!

To give my doc some credit it is probably a liability thing.  It would be an off label use of the drug.  He could potentially get his license yanked for turning me into a guinea pig but at this point I DO NOT CARE!  I WANT TO TRY THIS!  I AM SICK TO THE TEETH OF SITTING AROUND THE HOUSE!  I am SO frustrated with him.  My last visit I went in with a list of odd treatments that other CFS patients have tried with some success.  They are low risk so I figured he might go for them.  Not a chance.  He said no to all of them.  I'm to messed up in the head when I'm in the actual office I can't argue my case at all never mind well.  And of course I had forgotten to print out papers regarding the treatments to help bolster my case.

Which brings me back to spouse...   Yes, he loves me.  Yes, we are getting along way better.  Yes, our marriage is recovering.  However, I can NOT talk about my illness in any way or he gets wonky. Sometimes it is a little wonky but often he gets angry.  So much so, that reasonable conversation is no longer possible.  So the idea of me explaining things to him so that he can go to the appointment and actually advocate for me is beyond the realm of possibility at this point in time.

Which brings me to my final rant of the evening, my new waterbed.  We got it three weeks ago.  While I sleep really well on it and it is great for my sore joints, it smells.  It is like going to sleep wrapped up in a brand new vinyl shower curtain every night.  The smell has abated somewhat.  The room no longer stinks.  However, I'm a stomach sleeper so my face is inches away from the mattress every night.  When we first got it the smell made me nauseous.  It isn't that bad anymore but I have to wonder what horrible chemicals I'm inhaling every night.  I really don't know if we are going to keep it.  We haven't had that discussion yet.

Okay, so on to the drugs.  I saw my shrink today and unloaded most of the above on him.  I left out the CDC phone call since that is another can of worms for another day.  Of course I was crying the whole time.  It has been that kind of "me against the world" week.  Also I just cry at the drop of a hat these days.  Must be a hormonal thing from the illness.  I used to be so stoic.

Anyway, after he explained that he in no way considers me clinically depressed, he suggested maybe I take something to even out my moods.  So I'm thinking drugs or no drugs?   Prosac is the only antidepressant I've had any luck with in the past (I've gone through three major bouts of depression over the last 50 years) but that was before CFS.   Dr. Komaroff told me that anything that affects the central nervous system is highly reactive with CFS.  I've already had severe reactions to Gabapentin and Effexor so that whole class of drugs is off limits.  I took Prosac over 20 years ago so I have no idea how I will react to it now.  Also I don't feel depressed.  I have bad days and occasional bad weeks but I'm not classically depressed just really tired of being sick.  So here is comparison of my symptoms:

Depressed me:
"I'm worthless"
"I'm shit."
"Why would anyone like me/want to be friends with me/etc?"
"I'm a terrible parent."
"I'm a terrible employee."
I mope around.  I don't want to do anything.  I'm not interested in doing anything.  All I want to do is sleep and hide.  I'm not happy.  I'm not angry.  I'm emotionally flat.

CFS me:
"I'm angry at my primary doc."
"I'm angry at the CDC/NIH/CFS research funding/etc."
"I'm angry at my CFS doc."
"I'm angry at hubs."
"I'm angry at my illness."
"I'm angry at my broken body."
I cry at the drop of a hat.  I'm so angry I want to punch walls.  I want to yell at people.  I feel like everything is a fight.  I feel like I am on my own fighting with no help.  But on good days I do stuff.  I cook.  I enjoy the outside and the sunshine.  I enjoy the flowers in my backyard.  I like going out for rides with my son. I love going to farmers markets.  I'm often happy.  I love it when my son and his girlfriend come over.  I love it when my friends come over to visit.  I love it when my Mum comes to visit.  I love spending the quiet hours of the morning curled up with my cat on the couch watching Hulu or Netflix.

So, do I want to be drugged so that I'm not as angry?  So that I don't cry as often?  So that I'm not suffering?  So that I'm not in emotional pain?  So that I "level out" my emotions?  Is going through the darkness of this illness something to be fixed with meds?

There is this idea that we need to walk through the darkness and not turn away from it.  That the darkness will make us stronger.  I've been through lots of darkness in my life and I know I'm very  very strong.  I'm a fighter.  I don't give up even when I'm crying.

There is also the Buddhist idea that this is all illusion and impermanent and will change soon anyway so why get attached to it in the first place.  Maybe that is what I need to remember.  I get angry because I am wishing for things that I can not have at this point in my life.  I am wanting.  In Buddhism, it is wanting that is the root cause of suffering.

I need to figure out how to let go of the wanting.  Then I won't need the pills.  And, I'll be stronger for it.