Saturday, June 30, 2012

Bad Day in Marriage Land

I hate days like this.  Hubs  is in a foul mood.  Nothing I can do about it.  He is angry that my medical care is interfering with his life.  He is also angry that this all could have been avoided.  His response: "you really need to get a new doctor".

Yup, it was another trip into medical stupid land.  Two weeks ago I developed a very small tic-tac shaped clear bump on my big toe.  It appeared to be full of fluid.  It was tiny.  It didn't hurt.  It didn't itch.  I decided to leave it alone and see what happened.  Last week I saw my doc for a routine follow up for my CFS.  Catch up on bloodwork, symptom lists and meds.  I asked him to look at my toe.  The tic-tac had now resolved into three small lumps that had a dark red almost black centers.  He took out his magnifying glasses and declared that they were bugs bites.  More specifically "breakfast, lunch and dinner."  Cute.  He decided to leave them alone since they weren't bothering me.

Over the course of this past week, more clear lumps showed up until a dime sized patch was covered with them.  The entire area was red.  Hubs said the toe was slightly swollen.  My masseuse, who used to be a dermatology nurse, said it looked like an allergic reaction and asked me if I had been in contact with anything weird.  Why, yes.  I had walked through the garage barefoot a few days back but I'm pretty sure the lump was there before I did that.  Timelines really aren't my thing since becoming sick.  I get events out of order all the time and can never figure out how many days pass in between events.  Anyway...

Yesterday, some of the clear lumps filled with pus.  Great.  Think its time to take care of this.  I call the doc and talk to the nurse.  Doc decides that he wants me to go see a dermatologist rather than go back in to see him.  The nurse emails me the contact info late in the day right as I'm going out the door to see my chiropractor.  There is no way I can call during office hours.  I'll have to wait until tomorrow.

Overnight, I discover a second patch in between my toes.  This one is a vicious red and it looks like some of the lumps have burst and bled.  Can't really tell because it is facing away from me and I'm not enough of a contortionist to really get a good look at it.  All I can tell for sure is that there is a dime sized patch of small bumps there as well.  So today I call the dermatologist my doc wants me to go see.  He is booked until October and his colleagues are booked through the end of July.  Well, the way this situation is rapidly deteriorating that isn't an option.  I call my doc's office back and tell the substitute receptionist that I can't get in to see the dermatologist.  She talked to my doc and then got back to me.  The regular office manager will try and set up an appointment for me with a dermatologist on Monday.  However, she has been out since her daughter is getting married and substitute doesn't think she will get to it on Monday but just call back if I don't hear from by the end of the day.

I promptly feel myself descending into medical hell.  I have a rash that is spreading and probably infected and a doc that wants to foist me off on a specialist rather than reassessing the situation and giving me drugs so that this doesn't get worse.  Next week is July 4th which is a HUGE holiday and poof it is on Wednesday.  People are either taking the entire week off or Wednesday, Thursday, Friday off.  I have my IV on Monday and I'm going to VT on Tuesday night for some unknown period of time.  If I go to a specialist I need 1) a facility that is wheelchair accessible (no kidding this is a problem in lots of places) 2) a driver 3) a person to push my wheelchair.  I also have to schedule the visit around the other doc visits I have and preferably in the afternoon so that I'm not a mumbling idiot when I go see them.  Both hubs and kid are now working full time, my regular ride is going to NH for the entire week and I've already tapped my alternate ride for my IV on Monday.  I'm basically f'ed.

After hubs gets home from work, this idea pops into my head.  Lets head up to the walk in clinic.  It is after hours so they can't call my doc.  The regularly treat skin rashes or at least stabilize them so they don't get worse before you can see your regular doc.  They will prob give me drugs to treat this. If it is really bad they have a podiatrist on staff who might be on call (if it comes to that but I doubt it is that serious).

So already grumpy hubs drives me two towns over to the walk in clinic.  The staff is great but the check-in is kind of stupid.  I have to go back and forth between the triage nurse and the check-in desk.  Hubs goes back out into the waiting room first chance he gets.  For some reason he doesn't like waiting with me in doctors offices.  I get triaged, signed in and make my co-pay.  It is about 30 mins between walking in the door and actually seeing a medical professional.  Not too bad.  It is a quiet night.

I finally see a nurse practitioner.  She used to work for my doc many years ago.  She remembers my name and vaguely remembers me.  I look totally different than I used to and I'm in my wheelchair so I'm not too surprised that I didn't look that familiar.  Anyway, she tells me that yes indeed I had an active skin infection and the patch between my toes looks like a fungal infection.  So I get scrips for cream for the fungal infection and antibiotics for the skin infection.  Woohoo!!  Hurdle number one overcome!  No trips to the ER this weekend!

I check out.  We head over to Walgreens at the end of the road to get the scrips filled.  I have never EVER used them for my scrips before.  I use a local mom and pop pharmacy which of course is now closed.  I give hubs the scrips and my Blue Cross card.  I settle into the truck to read my Kindle.  Much later he emerges and asks me for my ExpressScrips card.  Turns out I don't have it on me.  Of course I'm too muddled up in the head to explain the BCBS covers our meds.  I have an unusual plan.  ExpressScrips is for buying pills through the mail not from the pharmacy.  Now he really gets his panties in a bunch; grouses at me for not having my card and stomps back into the pharmacy to cancel the transaction.

As we get back on the road home, I start telling him the details of our health plan and how every time I go to a new pharmacy they try to use the wrong card because they don't get too many BCBS accounts that cover meds.  They never believe me until they call the companies themselves.  So now Mr. Crankpants decides he wants food.  Screw the pharmacy.  So we stop in Longhorn which is on the way home.  It is another half hour wait.  He plays with his phone the whole time.  He is pissed.  We eat in silence.  Only swapping a few words here and there.  He texts his friends more than he talks to me.  Food done, we head home.

As we leave the parking lot, I tell him that I have accounts at CVS as well as at Smith Drug.  We should be able to go to ether place and they should have my records.  He drives towards our house.  He is in lala pissed off land and drives right by the turn that would take us to the pharmacies.  I say "drugs" and point down the road we just missed and he grunts.  He goes the long way round to a different Walgreens.  When we are parked I ask him to look in his wallet since he should have the drug card himself.  He does.  I tell him if there are any problems just pay for the stuff and I can get reimbursed from BCBS after the fact.  Why in hell he didn't just go to CVS down the road is beyond me.

He goes in and it is a long wait.  I'm too messed up to read by this point so I watch some kids in the parking lot hang out.  One of them lights off a bunch of firecrackers and they scatter.  Next thing I know the cops are there.  The manager is outside.  Everyone is grousing about the kids.  Hubs finally emerges and tells me that Walgreens no longer takes BCBS.  WTF!?!  He just had to pay $50 for my meds.  No biggie really.  If it were car parts he wouldn't even blink.  Instead he is even angrier.  He had to pay FIFTY DOLLARS for that!  OMG!  I would have had to pay more than that if I ended up in the ER over the weekend from the infection getting worse.  But no.  He is in full tilt crank mode.

We get to the house and he has to help me inside.  I can no longer walk and I'm doing a very poor job with my gross motor skills.  Not quite headbobbing but damn close.  He leaves me on the bench in the vestibule and disappears into the garage.  Now I need my walker to get around at this point.  I need someone to get it for me since I can't walk.   I'm not even sure where it is in the house.  He doesn't come back in.  I hear the floor jack.  This means he is fixing cars and won't be back into the house.  I'm stuck on the bench.  I have to sit and wait until I'm able to get up and hobble around until I find my walker.

He spends the next several hours outside.  He is ANGRY.  He finally comes in only to discover the pile of stinky dishes he has been avoiding all week so now he has to do dishes.  Something he hates. I think it has become a symbol of my disability.  He gets really really angry when he has to do housework.  So now he is stomping around the kitchen.

This whole thing reminds me of some horrible YouTube vids called Tourette's Guy.  He is this man who has Tourette's Syndrome and anger issues.  He will do something which gets him angry and then he does something stupid because he is angry which usually results in him injuring himself.  During the entire debacle he is swearing his head off (which is the Tourette's).  CJ often reminds me of him.  He gets angry and acts out of anger or because he isn't thinking clearly because he is angry and the whole situation just escalates until he is walking around swearing.  If he just calmed down and thought things through it wouldn't get nearly as bad.

OMG I hate days like this.  There is nothing I can do about them.  I can't fix him.  This is his own crap he needs to deal with.  I have no idea what to do with him so I ignore him.  He finally tells me that he is going to bed because he is getting up early in the morning.  I ask him where he is going and when he is going to be home.  He has set up a little boys getaway for tomorrow without telling me about it.  He is going out first thing in the morning to get his noisy car so that he can put it on his trailer and take it to a car show tomorrow night.  I'm going to be at home all by myself for most of the day.  I remind him that we were supposed to go to the farmer's market tomorrow noontime.  He explodes.  I HATE going there!  IT is the SAME thing every week!  It is SO repetitious!

I just look at him "you are spending all day tomorrow doing car stuff and you can't spend 45mins taking me around the market?  Besides you like what I cook with what I get from there."

Silence.  He is in bed at this point so he just turns out the lights.  I give him a lame kiss and leave him to stew in his own juices.  I wish he enjoyed his time with me.  Instead I just seem to be a huge inconvenience to him.  I'm in the way.  I have to be wheeled around.  I can't do stuff on my own.  I have to be helped.  Makes me wonder about our relationship.  It also makes me glad that I'm dragging him into my next counciling session.

I've done the best I can.  I've got medicine to stop this infection from turning into something serious. I've managed to do this outside of work hours so that no one has to take time off.  I've avoided a potential trip to the ER.

I will probably still go see the dermatologist since this fungal infection seems to be spreading all over my body rather than going away.  My toe isn't the first place it has shown up but it is the first time it turned into a full blown skin infection.  At least going to the dermatologist is no longer a time sensitive thing and it won't matter if I have to wait a couple of weeks.

Hubs on the other hand is on his own.  I don't know how to fix him.  He is broken.  He doesn't/won't appreciate the fact that disaster has been averted.  He is angry that he had to take me to the clinic.  He is angry that he had to spend money on meds.  He is angry that he has to take me to the market tomorrow.   And to think two days ago he was a happy camper and was actually kind and understanding and willing to help me out....  I just don't get the mood swings.  And you know what the kicker is to this whole thing.  He will NOT ever apologize to me about it.  Don't ya just love marriage!?!

Wednesday, June 27, 2012

Go Mum!!

Now for something completely different....

My Mum is going to be 80 years old this year.  She is still skating.  In fact she just particiated in the Adult Skate Week in Lake Placid.  I used to attend this with her before I got sick.  This is a video of the rehearsal for the group number that is performed in the show at the end of skate week.  She is the short lady with silver hair.  I am SO proud of her!!  I wish I could have seen her in person but this is almost as good as being there.  Her ice dance coach is the one who choreographed the number and makes a brief appearance in the video himself.  Go Mum!!

Tuesday, June 26, 2012

A Confession

I have been driving hubs nutty.  I'm obsessed with food.  Thing is I like food.  Rather, I LOVE food.  I like the way it tastes.  I like the way it looks.   I like the smells.  I've been cooking since I was seven when I helped my Mum bake a pie and I got to make the crust.  However, normally, my thoughts only tend to revolve around food when I'm a) making a shopping list, b) planning out the menus for the week c) cooking or d) I'm hungry.

Trouble is, lately, I've noticed that I've gotten way worse.  I think about food almost ALL of the time.  I'm reading food blogs.  Following real foodies on Facebook.  I'm borrowing cookbooks from the library.  I'm reading about nutrition and nutrition studies.  I'm reading about the guts and CFS.  Every once in a while I step back and wonder why.  Why this obsession?

I haven't been this bad over the entire course of my illness but the illness didn't start off well either.  One of the main first symptoms of my CFS was almost constant nausea, food was immediately a problem.  I couldn't eat anything!  I was rapidly dropping weight.  My acupuncturist put me on congee (double boiled white rice) just to get food into me while he riddled me with needles to get my digestion working again.  Then he had me adding boiled meat and boiled vegetables.  Then a little fermented soy.  Then I moved onto chicken broth based soups.  Slowly I built up a repertoire of food that I could eat without wanting to throw up afterwards.  It was a slow process but it worked.

Once I got past most of the worst digestive issues, I ate a very clean diet.  Organic fruits, vegetables, meats and some tofu.  Gluten free breads, English muffins and crackers (GF stuff doesn't come organic unless made at home from scratch- like that was going to happen with CFS...).  I had made a private bargain with myself; if I ate a really clean diet I would be well by the fall and would be able to go back to work.  Of course, I still didn't know what I had.  I kept thinking this would just go away.  That I could fix it.  (If I'm being really honest with myself, I still think I can fix this.)

Once I hit the six month mark, the neuro symptoms hit (this is the normal progression of the disease BTW which I didn't know at the time), I got a diagnosis and I took a turn for the worse so I threw caution to the wind and started eating junk food.  I stuck with the GF because I'm not suicidal but I was purchasing muffins, cakes and brownies.  I ate chocolate and ice cream.  Desserts every night.  I just didn't care.  Slowly I noticed that I felt like crap after eating such things and I slowly but surely dropped them back out of my diet.

By spring when I did the Elimination Diet (The Diet from Hell), I was a mess.  I was so sick.  The diet made me bedbound and it took several months to recover from it.

Then fall came along and I found Paleo.  I figured what the heck.  It can't hurt any worse than the Elimination Diet.  Within a month I dropped several meds.  The nausea, terrible heartburn and intestinal pain all went away.  My period got back to normal, my mood lightened, I had more energy. I was a convert.  That is when the obsession started.  I made another secret pact with myself; try this diet for six months and you'll be cured.  After all, Dr. Wahls cured her MS in six months why not CFS?

I'm ten months into the diet and, no, I'm not cured.  But I'm still obsessed.  I did have a period of depression when a three month relapse happened.  I went from being able to walk around small stores with my walker to being bedbound, which is enough to put anyone out of sorts.

But the food obsession is still there.  I'm still reading blogs, papers, studies, articles.  I'm thinking about food all the time.  I keep thinking "if I only I had enough energy I would be making yogurt or ferments or kefir or sourdough bread or fill in the blank and then I would be able to heal faster".  I have wondered a few times if this was unhealthy mentally.  I've told myself a few times that I need to get a different hobby.  Other days I just say that I'm obsessed because I'm trying to heal myself.

Today, however, today I had an epiphany.  I was sitting out on the deck obsessing over a food war started by a real food blogger who decided to publish a post bashing Paleo.  I was pissed.  I stopped following her blog and un-liked her on Facebook.  I spent hours reading through the comments section on her blog and the rebuttal blogs.  Then I asked myself, why?  Why am I wasting so much energy over this?  Why am I obsessing over this?  Then it hit me...

Food is the ONLY thing I can control in my life right now.  I have NO control over: work, housework, finances, reading, health, friends, family, exercise, weather, etc.  NONE!  Food is it.

So I have a double edged sword in my hand: I'm trying to cure myself by eating the correct foods and food is the only thing I can control in my life.

I'm wondering if this will end well....

Monday, June 18, 2012


Still haven't needed the stuff myself.  But here are some great article on sunscreens.

How to make some yourself:

Ranking of natural sunscreens:

Don't just take my word for it (diet helps with sun exposure).  There is a great list of links for more info at the end of her blog:

Sunday, June 17, 2012

From Starvation to Gluttony

I was born in England.  My dad was a blue collar worker.  Back in the 60's this meant that he wasn't upwardly mobile as far as class and work went.  He even took elocution lessons to loose his working class accent so that he might, MIGHT, get promoted in to a management position.  Hence he wasn't paid much.  Blue collar work pays poorly in the UK.  We were also house poor and barely making the monthly payments and taxes on the small house we were living in.

So my first memories around food are not having enough of it.  I remember my Mum putting out a nice dinner for me and my sister and when I was finished I was still hungry only to discover that all the food was gone.  There were no seconds.  And this happened a lot.  I remember eating jam sandwiches to fill in the holes in my tummy.

When I was older I found out that my Dad insisted on eating steak every night even though we couldn't afford it so my Mum would often skip eating the meat or the dinner so that us kids could eat.  Beans and eggs on toast was a fairly common dinner when I was growing up.  As well as boiled ground beef with peas and carrots served over pasta.  But mostly I ate steak and potatoes.  Just not a lot of it.  I was tiny and skinny.

After we moved to this country we had money for a while.  Dad had gotten a really cool job and we were relatively rich.  Rolling in to the US in the 70's meant Wonder Bread, Sunbeam Bread, Hostess Cupcakes, Twinkies and Dunkin' Donuts.  We were in food nirvana and I almost immediately got chubby.  I had lots to eat and, what seemed to a seven year old, an unlimited supply of sugar.  Mum tried her best to keep our desserts to a reasonable number.  But daily candy/chocolate, lunch dessert and dinner dessert were daily occurrences with an occasional box of donuts that would be consumed in a few hours by three of us.  Of course back then this was considered normal.

By the time I got to high school we were poor again.  But now I could work.  As soon as I could, I started paying for groceries so that we had food in the fridge.  By this point I had a very bad body image.  Looking at my pictures now I wasn't that overweight but at that time, when the girls either had eating disorders or were on diet pills, I felt huge.

My mum had done a wonderful thing and taught me how to cook.  She made sure we had lots of fruit and veg available and fresh meat.  She tried very hard to limit our sweets.  She also let me loose in the kitchen at a young age so that I could experiment on my own.  To this day I learn to cook via cookbooks.

The 80s rolled around and fat was bad.  I watched as fat got swapped out for sugars and artificial sweeteners in processed foods.  100 calorie packs were invented.  I was poor again since I moved out and wanted to make it on my own.  This meant pancakes, oatmeal and lots of eggs.  Chicken was the only meat I could afford.  My weight had settled down to a nice chubby 225lbs on a 5'2" frame.

In the 90s, still overweight, I caved and went on my first official diet.  It was based on science so I had some confidence in it: high carb, low fat.  I learned a different way to cook.  I lost a lot of weight. I think I got down to 150lbs.  I was within my goal weight of 130lbs.  Didn't last long because I got pregnant soon after.  I ate healthy during my pregnancy which went well.  The birth was a bit of a cockup but that is a story for another day.  Lets just say I ended up with a week long stay in the hospital when they originally wanted to toss me out the next day.  I was five pounds lighter after giving birth than before I got pregnant.  Woohoo!!

Then the postpartum depression set in and I could no longer get to the gym for my weight lifting and aerobics sessions.  Heck I was spending 3hrs at the gym several days a week and that just isn't sustainable with a newborn and work and husband.  I gained all my weight back.

It has stayed put, hovering around 220lbs, for decades.  Didn't matter what I did.  How much I swam/stairmastered/treadmilled/weightlifted. What I ate.  I was stuck at 220lbs.

Now I'm at 260lbs.  Yup.  That is a big number.  But I'm also stuck on the couch.

It is a scary number.  However, like I said last time, I have to be patient.  I'm using diet to heal.  It is working all be it slowly.  I can work on the number later.  I have to get my body working right first.

But given my sordid history with food, is it any wonder that I'm obsessed with it!?!

Plus I'm bored off my nut and it is one of the few things I can tinker with and explore as a chronic chick.

Thursday, June 14, 2012

My First Cavity

since contracting CFS.  Yup.  My first trip to the dentist for tooth repair since getting sick.  Needless to say I was scared.  The cavity was in a tooth that is on the side of my head with THE most sensitive nerve in my face.  My tongue tip often tingles and my nose itches from it.  I don't get numbness I get the itchies from it and the dental hygenist has to numb my gums before she can clean my teeth.  Yup.  Hypersensitive nerve plus cavity not a good combination.

I had three things going for me: 1) the tooth didn't actually hurt yet, 2) the cavity was in a tooth that had broken off to the gum line and reconstructed almost 15 years ago (i.e. it was mostly dead material) and 3) lots of friends and resources on the internet that could give me pointers.

So here is how the visit went.

I had selected this new dentist a few months ago based on their website claims that they fully cater to patients' needs.  They have an office that is wheelchair accessible and a staff that dotes on the customers.

I had my teeth cleaned there a few months ago and was treated really well by the staff even after I told them about my hokey illness.  They took every care that I was comfortable, not in any pain and even that I wasn't dizzy or too hot.

Today I went in and explained that my illness was neurologic and that anything that affected my central nervous system would cause problems.  I told them that I shouldn't have adrenaline/epinephrine in the numbing shot which they accomodated without question.  They also gave me additional pain killer/numbing agent so that I wouldn't feel any pain.  I told them about the nerve problem.

The dentist came in and gave me lots of time for the shot to take effect.  Then he told me that he was going to go slow and if I had any pain at all to just indicate that to him and he would stop immediately.  As he drilled away at the tooth, initially everything was fine.  He did hit a tender spot and I winced and he immediately pulled out of my mouth.  He asked me what was going on and what I was feeling.  I told him it was pain.  He gave the shot a few more minutes to take hold and he might have changed to a smaller drill head and started drilling again with no problems.  He accidentally hit the painful place twice more and figured out exactly where the painful spot was and avoided it for the rest of the procedure.

They used a high suction device to continuously remove the debris from my mouth.  I didn't swallow anything nasty at any time during my visit.

The new filling was made out of cosmetic composite so I have a white filling that is indistinguishable from my tooth and no mercury at all in it!  Woohoo!!

He also made sure my dental appliance fit over my reshaped tooth.  The real trick will be trying to wear it tonight now that the shot has worn off.  Honestly, I couldn't really say if the appliance fit well since the right side of my head was numb by that point.

I came home and immediately took several activated charcoal caps to remove any toxins from my system including any mercury from the old tooth.  I will be drinking some clay after I finish this post.  It is hard to time these since they have to be between meals and pills so that they don't interact with the meds rendering them useless.

So now, ten hours later, I'm doing fine.  I'm not too wiped out (but that may change tomorrow).  My mouth doesn't hurt much and I only have a slight dull ache in my tooth.  I don't need pain meds.  I even forgot about it and mistakenly chewed on it when I had my evening snack.  Ouch!  It did hurt but not nearly as bad as I worried about.

All in all not a bad experience.  I'm happy with my new dentist.  They listened to me and were respectful of my needs.  I came away with a filling I was happy with with minimal disturbance to my CFS riddled body.

Wednesday, June 13, 2012

Jabba the Hut Revisited

I figured something was up with Paleo and women's bodies.  Check out this article:
Paleo Sexist Woes

The author tackles some interesting subjects not just how scientific studies often exclude women or if they do include them they use menopausal women so all that messy monthly hormone wackiness doesn't screw up their data.  She also looks into perfectionism and sexiness vs healthiness.  She also gets into why women store fat on their bodies and why it is a bad idea to get super thin.  One of the comments (which sounds really biased and so not politically correct) talked about the fashion industry being run by gay men who like their women to look like young boys which results in the social norm for sexy women looking like stick figures.  Not sure I agree but an interesting argument.

Anyway, great article.  She normally blogs here.

And next time I start whining about looking like Jabba the Hut, will someone please remind me that I'm taking steroids?  I keep forgetting that little detail and then wondering why the scale keeps creeping up on me.  Of course I blame myself and start on that little headtrip of self loathing.  Like DUH!  So NOT my fault!

Thursday, June 7, 2012

Sick Humor

I recommend NOT eating snacks while watching this.  But very funny....

A Good Day, Butt....

Finally a good day.
All the methylation supplements are now detoxed out of my system.
I've cut back to bare essential supplements until I figure out what I should be taking.
I've discovered melatonin to help me fall asleep and I only need a tiny amount of it.
I had my biweekly glutathione IV yesterday.

I'm full of pep today.  I went to the supermarket with the kid today.  Then I actually managed to put piles of stuff away!  You can actually see the top of my dining room table for the first time in six months!  Woohoo!!  Major victory!

Basically I'm regrouping.  I've had enough of obsessing about diet.  I'm on the right track with it.  My guts are slowly healing.  I've collected way more recipes than I'll ever make this coming year considering I can only cook a few times a week.  Plus I'm not loosing any weight.  Here comes the butt...  (hehehe)(I love puns)

Blerg!  All this chatter on the Paleo boards that you don't have to pay attention to what you eat since you are eating healthy and the pounds will just melt off.  It's a crock.  Or it only happens with men.  Yup.  It is a known fact that it is easier for men to loose weight than women.  They have all the luck.  Generally they have a faster metabolism.  Plus we need a certain amount of fat to bear children (whether we choose to or not is another issue) which means our bodies want to hang on to the stuff for dear life.  Mine is no different.  I have lots of fat around my middle.  Yup.  The worst place to have it.  And it doesn't want to leave me.  It must like my company, after all, I AM pretty interesting.

I have been various degrees of overweight since puberty.  That is just shy of 40 years.  The thing I've discovered with my body is that it needs exercise to shed fat (not necessarily weight).  And here I am sitting around virtually everyday.  I've put on 40 pounds since becoming sick two years ago.  God knows how much muscle mass I've lost.  I shudder to think.  Initially, I lost ten pounds due to a combination of not being able to eat and loss of muscle mass.  Thankfully, I've slowed down with the weight gain.  I thought I had leveled off last fall but being stuck in bed for the first three months of this year and slowly rebounding from said crash has lead to a slow but steady increase in weight.  I'm beginning to feel like Jabba the Hut.  I'm buying clothes in a 3x!!  Ugh!!  I have never EVER been this big.  Even my fat clothes don't fit anymore.  I try not to worry about it but some days it bugs me.  I'm going to be one of those fat ladies that gets their fat ass filmed as I'm being wheeled around the supermarket and posted on YouTube for people to laugh at.  It is humiliating.

Here I am doing this major diet overhaul.  I'm eating minuscule amounts of sugar and very few starches.  I'm eating better than I ever have and I'm getting bigger.  ARGH!!  I'm doing everything I'm supposed to be doing to switch my body over to fat burning from sugar burning but my fat doesn't want to cooperate.  It likes me too much to leave.

Part of it is that I like food.  I like eating.  And, damn it, I get hungry.  I read some of these blogs and wonder how the women are still standing.  "I ate a mango for breakfast."  Really?  I would be starving an hour later.  "I ate some carrot sticks and an apple for lunch."  My blood sugar would be on a roller coaster ride if I ate like that.  I would be rail thin and clawing my husbands eyes out due to lack of food.  I'm not fun to be around when my blood sugar tanks.  On top of being cranky (megabitch cranky mind you) I also get nauseous.  I feel like I'm going to throw up.  So eating fewer calories (apart from not working for the general population) isn't really an option for me.  For peet's sake I'm already not eating sweeteners except my once a week ice cream and a small amount of dark chocolate in the evening.  Weight is such a complicated thing.  If it were easy to loose weight, then everyone would be skinny.

Not being able to move bugs me on so many levels.  I liked being active.  I love swimming, weight lifting, aerobics, ice skating, hiking, bike riding, rollerblading, walking, yoga.  You get the idea.  It never mattered that I was big I was moving.  I liked moving.  Now I'm stuck.  Stuck in bed.  Stuck on the couch.  Stuck in the house.  It is an excellent day when I can circumnavigate the perimeter of my own yard and only happens a few times a year.  December was the last time I walked down my own street.  God this bugs the heck out of me!!

My doc even said to me that he didn't understand why I was so heavy and that was before I was sick.  I was in the gym or on the ice six days a week and eating low fat, low sugar.  Of course now I wonder what would happen if I could do that same routine with my new diet.  Would the pounds drop off??  Would I become skinny for the first time in my adult life??

I don't want to buy 4x clothes next year.  That is just plain scary.  What the hell!?!

I just have to be patient I guess.  I have to trust that the diet changes are helping.  After all I've had lots of good things come about due to the diet changes:

  • My hormones are more balanced.
  • My period has become regular for the first time in two years.
  • I don't get the adrenaline spikes/crashes as badly or as often.
  • My brain works better.  My head is more clear more often.
  • I don't get my severe neuro symptoms as often.  They used to be a daily occurrence.  Now they only happen if I push way too hard.
  • My heartburn is gone and I'm off all heartburn meds.
  • My intestinal pain and cramping has stopped.
  • My skin is more clear.  I only get zits after I eat wheat or corn.
  • My teeth are whiter.
  • I have less tartar on my teeth.
  • My hands and feet don't swell up as often as they used to.
  • I can now tolerate wheat when I cheat although I do get some late night heartburn afterwards as well as zits the next day.  I no longer get the horrible gut problems.
  • I can digest beans more easily.
  • My hands and feet aren't as cold as they used to be.
  • I can tolerate heat better.
  • I have days where I can read for short periods of time or even problem solve.  I managed to do a math problem in my head last night!!  Hallelujah!
  • My libido has made a few guest appearances.  (It had run away for a while)
  • Haven't had a single migraine.  Woohoo!!
  • My cholesterol numbers have come down along with my blood pressure.
  • I no longer get sunburns.
  • I'm loosing my sweet tooth.
  • I'm pooping regularly and with ease.  (yes I went there....hehehehe...but normal pooping isn't something that often happens with CFS particularly when the guts are involved with the illness)
  • As long as I get enough sun and glutathione I see a slow and steady improvement in my energy levels.
So I guess I just need patience.  My body seems to be making repairs now that it has the right fuel. Things are getting better even if I'm getting fatter.  I'm in much better health than I was this time last year.  I'm not begging for pain meds from my doc.  I no longer need several prescription meds my doc had me on this time last year.   I'm mobile once in a while.  I'm getting out of the house a few times a week.  I'm going out to dinner and the movies again.  I snuggled with hubs the other night while watching X-Files!  Yay!!  Patience.  I must have patience and count my blessings that I'm not bedbound and there is improvement in my health.

As for the future.  This week I'm regrouping.  I'm going to go through my medical papers.  Get organized.  Figure out what supplements I should be taking (I can't remember what all the different docs have said to me over the last year.).  Figure out what I want to say to my doc and which blood tests I want done.  I haven't seen him in six months.  This is the longest I've gone without seeing him since I got sick.  I need a medical to do list.  Both for my own health issues but also to start prepping for the insurance battle that will happen this fall.  I want to give myself lots of lead time so I don't have to panic later or not be able to get stuff done because I'm crashed.  Lots to do.  Lots to do.  Worrying about my weight needs to be left off my list.  For now anyway....

"Adopt the pace of nature, her secret is patience."  - Ralph Waldo Emerson

Monday, June 4, 2012

Sunshine on a Rainy Day

British pop star aside....

One more article on sun exposure, real food, sun screen and skin chemistry:

Back to the pop star:

Gaston and the Methylation Protocol

My friend, Gaston, has just solved a puzzle for me.  Yesterday was a horrible day.  I woke up with a headache.  Never a good sign as these always escalate sometimes to rip my head off migraine proportions.  This one was no different.  As the hours wore on, the muscles in my neck, upper back and shoulders all started to spasm just adding to my headache misery.  By dinner time, I couldn't move my head without causing excruciating pain.  Normally I have a handle on this stuff.  I know what caused it and how to treat it.  But this one was a mystery.  The only thing I had done was eat at a Chinese restaurant that I don't normally go to.  The local joints don't bother me so I didn't think anything of going to the big national chain for some of the high end stuff.  Was there MSG in it??  Something I was allergic to??

Turns out the solution was much more insidious.

So, many many months ago, I read about the methylation cycle and how an engineer came up with a protocol of pills and drops to help improve the CFS symptoms in his wife.  This is now available on the internet so I downloaded the info and bought all the pills and drops.

Now I have pretty bad brain fog as one of my symptoms.  I also forget things constantly.  Since hubs wants nothing to do with my care, I'm on my own managing my medication/supplements.  I have them all lined up on the counter.  I have written on the lids with a sharpie how many pills I'm supposed to take. The position of the pill bottle in the lines indicate what time of day I'm supposed to take them.  In theory, I should be taking a pile of pills at each meal with the ones in the fridge between meals.  What happens in reality is that I take my morning pills most of the time since that includes my pain meds (anti-inflamatories).  I feel like crap if I forget them and yes I have forgotten them on more than one occasion particularly if I'm thrown off my morning routine.  Most days I forget to take everything else.  Sometimes this is even on purpose.  I HATE taking pills.  It annoys me and I often gag on the things.

Okay, so months and months after ordering the methylation pills and drops, I decide I should start taking them.  I've lost the instructions but I've got the doses written on the pill caps.  So I should be fine right? In typical fashion I take the drops in the morning: B12 and methylmate B.  Occasionally I remember to take the pills: folate, neurologic health and phosphatidyl serine complex.  By this point, I've forgotten everything I read regarding this stuff.  I'm also taking my regular pile of supplements without remembering why I'm taking any of them.

So here I am.  I've been taking the drops fairly regularly for a couple of weeks.  Hubs has moved the potassium pills out of my neat lines of bottles since he is taking them as well.  I don't notice.  Occasionally I remember to take the methylation pills and now I have a raging headache and muscle spasms and I think it is the food I ate the night before.  I don't want to take my prescription pain meds since that will knock me out for at least 24 hours.  I always leave those for the last line of defense.  So MSG toxicity?  I took a dose of bentonite clay.  I started to feel better within a half hour.  Okay.  Good.  I'm not going to die.  At this point, I remember that this type of headache/muscle ache combo is usually a potassium shortage and I had just run across an article saying that the US RDA for potassium is over 4000mg/day so I pop 400mg.  This time it took an hour or so before I felt somewhat better but I still had a slight headache.  For migraines I have used large magnesium doses with some good results so what the heck.  I haven't had any magnesium since my last blood test in December so 1000mg down the hatch.  Finally, at one in the morning, I'm feeling better.  No more headache.  No more muscle cramps.  No more pain.  I'm just tired and exhausted from the ordeal.  I still am today.

However, it wasn't until Gaston sent me an email about detoxing from the methylation supplements that it made sense.  It was one post from a forum thread:
"My guess is that because I'm not taking any of the other stuff anymore- B12, metafolate, etc- it [the pain] wasn't as bad but I still have enough of that stuff in my system to require more potassium than a normal person." 
The person had had a horrible pain reaction from stopping the methylation protocol.  S/he had this problem before and landed in hospital from the withdrawl.  So here I am dabbling with the protocol.  Often forgetting to take pills and/or drops.  Not following the protocol and I totally forgot to take ANY potassium with it.  So the Chinese food chain is off the hook.  It was my own damn fault for not reading the f**ing instructions before going back on this stuff.  Also for not looking into the protocol again to check for reactions etc.  I also feel kinda stupid to think this was fairly benign.  How could I forget that my system is hypersensitive to EVERYTHING!?!  I mean seriously!  I take half doses of the lowest dose pills for my meds.  I'm always slicing and dicing pills up into little tiny bits.  Why wouldn't something that messes with my system not screw me up?

So to borrow from Patrick once again:

Just don't do it.  Research EVERYTHING!  Here is the link to the simplified protocol:

Here is the background info which I haven't wadded through yet:

 And if you decide to try this, TAKE YOUR POTASSIUM!!

Sunday, June 3, 2012

More Sun News

I don't take sitting in the sun lightly (good pun huh!?!).  My sister was operated on for skin cancer this year.  My boss had to have multiple surgeries for skin cancer as did my sister in law.  I grew up on Cape Cod where I had several BAD sunburns.  The skin blistering up and peeling off the same day don't touch me or I'll scream kind of bad.  Until I switched to pastured/grass fed meats I used to burn with very short sun exposure.  However, after reading chunks of Seneff's blog and thinking about things long and hard it occurred to me that if we actually got deadly skin cancer from sun exposure alone we should have died out as a race many thousands of years ago.  Hence, in my undoctorish opinion, I think something else must be going on.

So I'm performing a grand experiment on myself: going out and sunbathing without sunscreen with about 90% of my body exposed at least 30 minutes every day that it is sunny here in New England.  That means about 2-3 times a week.  So far not a single sunburn.  It has taken me since March to show just a slight tan.  I tend to stay out for 45-60mins at a time often longer.  I wait until my skin tingles and is uncomfortable and then either sit in the shade or flip over to toast the other side.  This definitely has a positive effect on my energy levels.  I start to feel awful if it is rainy for 4-5 days straight.  Some might claim this is a placebo effect but it is very predictable and repeatable.  I'm not going to argue with it.  Hopefully I won't get skin cancer in the process.

Anyway, aside from the recap here is an article I wanted to pass along about sunscreen lotions causing skin cancer:

Meet Patrick

I had this great post all planned out in my head but I've had a terrible, rotten, horrible day of pain, headache and muscle cramps.  So you're SOL today.  Instead I'm going to send you to another blog.   I just discovered it today and I wish I could talk to this guy face to face.  Like me, he is only recently sick and recently diagnosed.  He has a great sense of humor.  His vid of Downfall had me in tears I was laughing so hard.  Turns out he has written a pile of memes for CFS/ME.  So here you go: Quixotic

Friday, June 1, 2012

Virus Hijacks Mitochodria

This is a short interpretation of a paper I (sort of) read yesterday (I skipped around a lot and read the short version of it on another web site).
"To spread, nervous system viruses sabotage cell, hijack transportation" by Morgan Kelly,
So here is the crux of the study:
  • Virus floods the mitochodria with calcium
  • Mitochodria stop moving and release one of its transport proteins to virus
  • Virus can now move using the stolen transport protein to invade nervous system
  • Mitochodria are frozen in place since they can no longer move due to missing transport protein
WARNING:  This study was only done in rats with only the herpes simplex virus (HSV-1) so it is too early to tell if this happens with other viruses.  However, this would explain a lot of the mitochodria dysfunction seen in CFS.  The author even suggests this might be the mechanism occurring in polio and West Nile.

Some cool pics/vids to help explain this:

Harvard has two amazing vids that are animations of what goes on inside cells.  I wish they had narration so that I knew what was what and what is going on.  However, start with "The Inner Life of the Cell" which show the assembly of the microtubule and the Kinesin-1 protein hauling a cell along the tubule.  Then, for giggles, watch "The Mitochodria" which shows a mitochodria working properly.  They actually show the lipid rafts on the mito wall that allow other cells to pass through the wall.
To see both vids you might have to click on the Mito one first, then exit, which dumps you to the page that has both vids on it.

Alternatively you can watch this vid of the animator explaining his work at a TED conference.  It has the clip of the Kinesin walking along the microtubule towards the end of the talk.

When you are done with those vids, go to the paper itself and watch the embedded vid that shows normal mito running around and then mito after viral infection.