Wednesday, January 30, 2013

Sick Humor

This was me Tuesday:

Tuesday, January 29, 2013

Sick Humor

Sick Humor

Monday, January 28, 2013

Status Update

One week on Equilibrant.
One month on Prozac.
One month on methylB12 and glutathione shots.

I have WAY more energy!!  I'm doing stuff again!  Like laundry and dishes.  I'm walking short distances unassisted.  I can tolerate car rides pretty well.  I can read for about a half hour.  I have periods when I can't sit still and have to get up and do something!  Wow!!  Even my recovery time is shorter and I don't seem to crash the next day after doing things.  I'm SO excited!!

I'm in a good mood.  I'm joking and singing.  Hubs has noticed and finds it odd and slightly disturbing.  He isn't used to me being happy.  After all it has been three years of sick yuckies.

My sleep is slowly returning to the nocturnal hours.  No more getting tired at 8pm.  I was up until 4am yesterday and it is already 12:30pm and I'm still full of pee and vinegar.  I started taking melatonin again to try and induce sleep.  It didn't work last night but I'm sleeping more heavily on it so I'm going to keep taking a 1/4tab.

Friday, January 25, 2013

Sick Humor

Some days are like this....

Tuesday, January 22, 2013

Cheating on Tests

Even though I am horribly sick I do have some limited control over how functional I am on any given day.  Need a shower?  Plan it on a day with few activities and take it at a time when most functional and get the most mileage out of it (I'll look clean for that doc visit the next day).  Have a doc apt?  No cooking, cleaning or trips outside the house for a few days prior and lots of rest the day before.  

I can also throw things in the other direction.  Taking a cognitive function exam?  Eat a nice wheat filled dinner and lunch the previous day and go for a walk and long car ride day off.  I'll look like I've lost my marbles on the test.

I've done this a couple of times for various tests.  I did make myself worse for a cognitive exam.  However, I have a high IQ so I made myself  appear normal.  Poop on me.  I also did it for my driver's exam last July.  I rested up for the entire week prior.  Had hubs drive me to the town where I had to take the exam hours early so I could recover from the car trip.  Ate breakfast, drank coffee and had a donut to load up on sugar.  The caffeine and sugar improve my cognitive and physical coordination so I was better able to cope with driving.  I passed the test.

So now we come to the ethics portion of the program...
Is this ethical?
I can tinker with my physical and cognitive abilities just enough to throw tests in my favor.  I can make myself appear more or less sick.  Of course this is temporary and I have hell to pay afterwards via gastro problems or more often becoming bedbound for days afterwards.
Does this mean I should be working?
Does this mean I should loose my drivers license?
Does this mean I should do my best or worst on my medical tests to show that I can't work?

I am sick.  I am horribly sick.  I'm on the low end of most functionality scales.  While I can take care of most of my toileting myself I still can't shower everyday.  I consider it a waste of my precious energy.  I can often cook breakfast but not dinner everyday.  I can't walk more than 50' without needed to sit down or risk passing out.  I can't read for more than 20mins without severe and rapid cognitive decline.

So, how does a 15-20min snapshot test represent my full capabilities or lack thereof?
Throwing the driver's test only shows that on a good day I have no trouble driving.  It doesn't show that on my bad days I cancel appointments, call taxis, have a friend drive me or use public transport for the disabled.  It doesn't show that I am very well aware of when I shouldn't be driving and on those days I don't drive.  The test doesn't take into account that I'm staying off the road on my bad days.  

What brought all this on?  My doc is threatening to have me road tested again.  There is a box on my handicapped placard application that asks if he considers me a threat.  Last year he ticked it off which lead to a whole world of hurt for me.  I had to call the registry daily for FIVE months before I landed an appointment slot for SEVEN months after he triggered the test.  Phone calls are very hard for me with this illness.  They tire me out very easily and guess what.  EVERY.  SINGLE.  DAY.  I was on hold for at least 20 minutes with the registry before I could even talk to someone.  ARRGGH!  I had to borrow someone's car for the test since mine doesn't meet the criteria required by the registry for the test.  I did nothing the week prior and ended up in bed for days afterward.  My hubs had to take the entire day off work to drive me to and from the test and to sponsor me.  He was livid that he had to loose a day of income for this.  So why am I ranting now?  Just a short six months after passing my road test with flying colors my doc is threatening to tick off that box on my application again.  I might have to take another road test.  Right now I'm in negotiations with him.  Trying to make him see reason but this really makes me wonder if I should keep my license or surrender it.  I do have good days.  More so now than last year.  On good days I can drive myself to local appointments and even out for dinner or coffee if I pick someplace that is less than 100' between car and counter service.  I have some limited freedom with my license.  Am I evil that I know I can throw this test once again?  My doc can't win this but he can make me suffer horribly in the meantime.  Is it worth it?  Is it right?

Monday, January 21, 2013

Prozac Not Potatoes

I started a low dose of Prozac just over three weeks ago.  Several things have happened.  Actually a whole bunch of things have happened.  I am much happier.  Yup, this stuff works for me.  I'm singing and cracking jokes.  I'm giving my husband grief (this is part of our verbal horseplay).  I stopped taking trazadone for sleep since the Prozac makes me sleepy.  The Prozac has reset my sleep clock and I now go to bed between 8pm and 1am like a normal person.  Apparently the seratonin boost also boosts the production of melatonin and hence the clock reset.  I no longer need to take melatonin to get to sleep at night.  I'm already tired from the Prozac itself.  I'm not sleeping as deep but I'm also no longer drooling during my sleep.  It also takes me a tad longer to fall asleep.  When I took melatonin I would basically pass out as soon as my head hit the pillow.  Now my falling asleep is more like my old self preCFS.

Now one of the super odd things that has occurred is that prior to my starting Prozac I was craving carbs ALL the time.  The cravings were so intense that I was cheating on my Paleo diet on an almost daily basis.  I was eating toast and/or sandwiches without regard to my health.  The cravings were too intense and I would cave constantly.  Once I started the Prozac the cravings went away almost overnight.    I guess there is some connection between carb cravings and depression and seratonin but I haven't looked into it yet.  The whole episode reminded me of a book that came out in the 90s called Potatoes Not Prozac that encouraged people to eat more carbs instead of doing drugs.

Which brings me to my final thoughts on Prozac.  Because I'm hooked into the Real Food community I'm privy/subjected to fairly frequent statements to outright rants against big Phrama and the evils of medications.  But face it, because I am SO sick, I need meds!  When I had a bout with severe pain I was begging for pain meds.  Over Christmas I would have probably died from the UTI if I hadn't received two IV bags full of antibiotics and the ten day course of anitbiotic pills.  So here are my thoughts on Big Pharma and meds.  Sometimes we are just too broken for food alone to fix us.  Meds can be life saving.  Meds are more commonly helpful to make our lives more comfortable and hence more bearable.  As much as the Real Foodies rank on Big Pharma and the evils of meds, I am supremely grateful for them.  My celebrex keeps a lid on my pain and daily headaches and my Prozac has made me much more happy and has normalized my sleep.  I have my Tramadol and Oxycodone for those really REALLY bad days when I want to start removing body parts because of the intense pain.  And of course I'm really happy there is a wide variety of antibiotics to help keep me alive when infections threaten to wipe me off the face of the planet.  This isn't to say food hasn't helped me heal.  It has.  By going full fat, grain free, Paleo I got off cholesterol meds and heartburn meds.  My guts are way happier with the new foods.  Even my brain works better on pastured meats.  However, I still need meds so that I can be more comfortable each day.  I, for one, am very happy they are available to me.  I will continue to tinker with my diet hoping that it will continue to aid in my healing.  My big wish is to improve enough that I don't need any meds.  But in the meantime, thanks Big Pharma!  Without you my life would not be possible.

Sunday, January 20, 2013

Energy: My Long Lost Friend

Apart from my period bringing me to my knees yet again, I seem to be maintaining my new found energy levels.  I've been cooking breakfast and dinner and even some extras.  I've been driving around town again.  I can read for about a half hour before brain fry sets in.  I've been doing multiple activities in one day such as showering, making breakfast, going on an appointment and then making dinner.  Holy Cow!!  I'll be skating next!

So what happened??  As far as I can tell it was the antibiotics resetting my system.  Once I stopped taking them I loaded up on probiotics both in pill form and food form.  I have eaten little in the way of sugar or wheat products although I have been trying various gluten free breads this past month (most of which aren't agreeing with me so back to Paleo I go).  My body seems to be doing best with lots of protein.

I do have two other things that might be contributing to this upswing:
I've transitioned from glutathione IVs to a glutathione shot combined with methyB12.
I also just started taking equlibriant.  I heard about this from another CFS blogger who's doc put him on it and he saw some improvement.  He then posted this video so I decided to give it a try.  What the heck!?!  I'm desperate and my docs have told me they can't do anything for me so I'm kinda on my own.

So I continue on my experiment of N=1.  Wish me luck!

Tuesday, January 8, 2013

Holiday Craziness

Since my last post I've been in the ER twice and had a killer migraine headache.  Hence the lack of posts here.

The ER visits were the result of a UTI that took off within six hours of onset to feeling like someone was holding a blow torch to my genitals.  OMFG talk about painful.  Of course one visit wasn't enough and after being in Friday day I had to go back Christmas evening.  A combination of not enough food, not enough water and an infection that was doing its best to take over my body.  Cipro is one nasty ass drug.

A result of being on killer antibiotics for two weeks is that it purged my system of every bacteria known to man and then some.  Once the infection cleared up I felt GREAT!  Better than I have in months.  Since I had a clean gut I decided to repopulate it with good bacteria so I've been eating fermented beets, sauerkraut, sourdough bread, yogurt, fermented cod liver oil, and massive probiotic pills.  I have also kept grains and sugars out of my diet as much as possible so I'm not feeding the bad bugs.  The cool thing about starting with a clean gut is that there was no die off reaction to the large doses of probiotics.  Woohoo!

I have energy.  My head is clear.  I'm reading again.  I want to exercise.  I'm in a great mood. My sleep has reset and I now have no trouble falling asleep in the late evening and getting up in the early morning without having to take melatonin or trazadone!

Of course there are a few other confounding factors to my new found health: I started glutathione shots (long story for another post) instead of my IVs, the shots include a dose of B12 and I started a pediatric dose of prozac.

Whatever is going on I'm happy about it.  I feel like I can take on the world for a change.  Don't get me wrong CFS is still there lurking in the background.  I still have to rest after each exertion.  I still can't walk down my own street but I'm feeling better than I have since last winter.  Whatever it is I'll take it!