More Sick Stories

  Prednisone and Myasthenia Gravis (MG)
Folks like me, who have an autoimmune disease are treated by taking something that puts our immune system into low gear overall, in hopes that production of bad antibodies will stop, or at least slow down so we can function.  I take prednisone, effective, but filled with side effects that, for me include weight gain enhancement (I can add a lb by looking at a piece of cake), and erratic blood pressure, blood sugar, mental stability, osteoporosis, and a few dozen other exciting and novel conditions.  So, we all try to figure the lowest effective dose.

At my last visit with the neurologist, I found out that tapering it might work best for me by taking it on alternate days, then every 3rd day, every 4th day etc, until either MG returned or I got off of prednisone totally.

Woke up this Tuesday feeling OK. Tuesday is the day for 30mg prednisone on my every 3rd day regime started March 4th, my experiment in trying to get off of prednisone and see if my underlying Myasthenia Gravis (MG) comes back again.  There is a slight chance (15%) that I am one of the few who goes into a natural remission--but I can't find out without quitting prednisone.

"What the heck," I thought recklessly, "might as well go for every 4th day instead of waiting for April." And so I skip prednisone on the 4th day.   No signs that MG was returning, nor problems with prednisone withdrawal yet.


Supposedly sudden withdrawal from pred. is fraught with peril, but not yet for me.  Dr. Google says abrupt withdrawal symptoms may include:  confusion, headache, fever, joint and muscle pain, peeling skin, weight loss, nausea and vomiting, dehydration, muscle weakness, and difficulty breathing.  None have appeared yet.  Wonder if it takes longer to crash?

Prednisone stops the adrenals from producing cortisol (sort of body made prednisone).  The withdrawal symptoms are because the adrenals have to restart again and produce their own stuff.  Somewhere in the quitting prednisone and startup of adrenals is a gap where the body is short on the stuff for awhile.


A trip Tuesday to Mayo for Margo. Walked briskly for 30 minutes roaming the subterranean passages under Mayo that only a former employee would know, before heading to the 19th floor to strap on a 24 hour Holter BP monitor.

My family doctor worries about my somewhat high 162/92 blood pressure--is it real, or just when she is holding my hand (30 year old very attractive woman). So, every 10 minutes the portable machine inflates the cuff, my hand goes numb, and another pressure is read.

Tuesday evening I am relaxing in my recliner, trying to get ready for the night shift with every 20 minute machine squeezes.  Everything seems normal.  Heck, if I wake up, may try skipping another day of prednisone.  Remember friends, my goal is to find out if I am in true MG remission--that MG has gone away and I no longer need to treat it.  I suppose, my reckless behavior might be attributed to prednisone withdrawal confusion ;-)

Wednesday March 20th--the first day of spring starts out at 4 degrees above zero here on top of the big hill west of Pine Island.  Down the hill in Pine Island it is 1 below zero! Living on top means more wind so the temperature advantages don't really matter.  The cardnials and chickadees are singing spring songs despite the 12 below windchill.

Another morning feeling reasonably good. So, for the 5th day in a row I am skipping prednisone.  Wondering if MG symptoms (double vision, closed eyelid, breathing difficulty and weakness will return or if I the prednisone withdrawal will start, or if I can tell the difference).  I do notice sore joints that I haven't had for many months. Prednisone masks the normal aches and pains of old folk's knees, elbows, hips etc.

My BP monitor, after waking me up for a couple of 20 minute starts at night, soon was forgotten and I slept through. When I awoke with the sun shining in the window, I took the BP monitor out of the pouch and watched it go through a cycle. At the end of a the cycle, for a few seconds, it shows the BP reading and HR.  The values were well down in the normal range!   Makes me think that all I need to do to have normal blood pressures is stay in bed or the recliner more of my day!

My prediction:

Doctor: "We don't have to treat your BP, but if you would lose 20 lbs, it probably would be back in the excellent range all of the time."
Patient: "Sure thing, that is next on my schedule."

Margo and I retired 7 years ago (just striplings at the time) and have spent most Jan-Feb's in the deep south avoiding the MN/WI winters. Of course this winter we had to stay near Mayo for Margo's chemo.   In LA, AL, and TX we acquired a taste for grits, biscuits and gravy, and ham steak with red-eye sauce.

Up here those are rare, so for breakfast today I do my imitation.  We buy the canned version of B&G, Pillsbury refrigerated biscuits, and substitute our own MN made Hormel Spam with Soy Sauce for ham steak and redeye. Once a week we try it--and if I am ambitious, some cornbread in place of the Quaker instant cheesy grits.

Margo is recovering nicely from surgery. The flood of advice from her doctors are "do the radiation, as 5% chance of cancer recurrence is much better than 30%."  Margo agrees.  So 5 weeks of 5-day per week treatments are likely to start in mid April.  Her hair continues to come back--now a fraction of an inch, but giving her head some dark color again.  She hasn't taken out the vacuum cleaner to redo my efforts yet, but I think by week's end she will be at it a sure sign of returning health.  ;-)

Prednisone -- The Lyrics

To keep my myasthenia gravis under control, I take prednisone to keep my immune system running on low.  In autoimmune diseases, like MG, the immune system attacks one's own body.  Prednisone is the most common drug that works to lower the immune system activity.  It has many difficult side effects, but it does work! 

I am active on a myasthenia gravis discussion/support group at Myasthenia Gravis Discussion Group where I can talk to others with MG.  I have never met a real live person who has MG, as we are quite rare  -- about 1 in 5000 people, so this is our support group.  We sometimes try creative looks at our disease.   My latest contribution is a re-write of the lyrics for the 1973 Paul Simon song "Kodachrome".  

You first need to listen to Kodachrome first and get it back in your mind:   A fun video to the song can be watched at 

Link to Kodachrome Video    A video enthusiast has the sound track and snippets of 30s-80s dancing movies--quite well done.  A test is to identify each of the many segments. 

 After you have the tune and Simon lyrics well in mind, try my lyrics.  

Kodachrome by Paul Simon
When I think back

On all the crap I learned in high school

It's a wonder

I can think at all

And though my lack of education

Hasn't hurt me none

I can read the writing on the wall

Kodachrome

They give us those nice bright colors

They give us the greens of summers

Makes you think all the world's

a sunny day

I got a Nikon camera

I love to take a photograph

So mama don't take my Kodachrome away

If you took all the girls I knew

When I was single

And brought them all together

for one night

I know they'd never match

my sweet imagination

Everything looks worse

in black and white

Prednisone  by the Rambler (apologies to Paul Simon)

When I think back of all the crap I took for Gravis
It's a wonder I can breathe at all
But it’s the lack of medication that’s hurt me most of all

I can read the label on the bottle 

Prednisone

You give us those nice strong muscles

You give us the strength to swallow

Makes us think all the world’s a better day, oh yeah!

I got a prednisone bottle

I love the maximum dose

So Doctor, don’t take my prednisone away

If you took all the pills I took when I was testing
And brought them all together at one time 
I know they'd never match my sweet pills of prednisone

And everything looks good with eyes wide open

Prednisone

You give us those nice strong muscles

You give us the strength to swallow

Makes us think all the world’s a better day, oh yeah!

I got a prednisone bottle

I love the maximum dose 
So Doctor, don’t take my prednisone away

Doctor, don't take my prednisone away 
Doctor, don't take my prednisone
Doctor, don't take my prednisone 
Doctor, don't take my prednisone away   etc

Myasthenia Gravis Update

As most of you are aware of to the extent of boredom of my finding out I have Myasthenia Gravis (MG) last May, I will pass on the latest news. 

After nearly a year over which I got quite weak and then, taking high doses of prednisone, much better by December, although messed up other ways by the prednisone,  since January I have been gradually reducing the amount of prednisone I take each day.  

The goal was to reduce prednisone until the MG muscle weakness came back.  The good news is that I have reduced prednisone to zero (at zero for the past 3 weeks) and so far MG has not returned and I am almost normal physically again.  I say almost, because when you take off 6 months when you can't really do much following another year or two of limited activity because of the leg and knee problems, getting back to full activity requires a lot of muscle rust removal.  

For the past 3 weeks I have been not only off prednisone, but very active doing maple syruping.  It has gone well.  I do have lots of muscle aches, but they seem to be the kind that come about from prednisone withdrawal as well as using muscles that have been idling much too long.   I figure I will make it through the last 3 days of the maple season--we pull the taps on Saturday when the weather gets in the 60s and sap spoils quickly.  

15% of people who get MG go on to a remission that can last the rest of their lives (or maybe only months) where they don't have to take drugs to lower the immune system.  Right now, it looks a little like that may be happening to me.  However, I really have to wait a few more months to know for sure.  In any case, I do know that if it comes back, I can beat it back by taking prednisone or something else to lower my immune system to stop it from making antibodies that attack my own muscles. 

 MG was bad!  The treatment, prednisone was bad!  But at the moment I am OK, at least as OK as an overweight out-of-shape 66 year old should expect to be.  

And to top it all off, my mind is tarp as a shack!

Anhedonia and Euphoria -- a Phantasmagoria

Spock of Star Trek
Did he suffer from
ANHEDONIA?

My neighbor just down the hill says he will tap his maple trees today!   I stopped to visit as we came back from Margo's daily trip to Mayo and caught him with the blower clearing the 6 inches of  fresh snow at the end of his driveway.

"Last year I tapped February 1st through March 1st, a whole month earlier than normal for me," he   told us.  "Got about half of my normal yield."   He is a physical therapist and his wife a school teacher.  They have a 10 acre woods around their house, full of large sugar maples--quite rare in our mostly prairie area of SE Minnesota.
 
My neighbor's father, Dr. Walters, a physician who had an old style family practice in Wanamingo, had the 10 acres and a small A-frame cabin on it for 40 years and every spring took some time from his medical practice to put out 50 pails and cooked some syrup.  When he passed away 15 years ago or so, his son and wife built a new house there and have continued the annual syruping--making 10-20 gallons of syrup each spring.  They are the only folks around this neighborhood who make syrup as far as I have seen from driving through the area.

Our home is between two branches of the Zumbro river that meander in from the west, cutting deep broad valleys in the prairie lands meeting in Pine Island.  The two valleys make a wedge of land that is about 1 mile wide and 6 miles long, an area that escaped the prairie fires, heavily wooded when the settlers came in 1850s.  Where the rivers joined was the island of Pine.  Where we live, on a high hill midway between the two valleys was an island of hardwoods; maples, basswood, elm, oak, butternut, ash and cherry trees.  The 10 square miles of forest in the midst of a thousands of acres of treeless prairie was (and is) an oasis for wildlife and forest products. Although much of it has been converted to farmland, the steeper valley sides, and as in the case of my neighbor and my forests, pieces of land never fully cleared.     My piece has not one mature maple on it--just a few young ones too small for tapping. We own a 5 acre woodlot strip -- 1/4 mile long and 166 feet wide, sold to a prairie farmer in 1900 for his wood supply.

Maple syrup season appears to be out for us this season.  Margo has cancer surgery March 11th followed by daily radiation April and May.   Mid March to mid April is the maple syrup season most years at Cushing, where our 60 acres of maple woods and lake cottage are usually open for business on March 1st.   I have almost no motivation to tap the maples this season, so I am not too bothered about skipping it this time around.

Which brings me to a health update.  Margo is gradually regaining strength lost from chemotherapy that completed January 14th. Since then she has had daily treatments for lymphodema (swelling) of the left arm and hand.  That means a 50 mile roundtrip to Rochester Mayo five days a week for light, massage and compression treatment. It is helping, but we can't help but wonder what will happen when she has the lymph nodes removed on that side.  Just have to wait and see.

Margo has a dozen tomato seedlings ready to transplant into their own containers this weekend as well as 30 geranium seedlings--all under lights in the basement.  She was so tired and sick from chemo, that December and January were months where just eating, sleeping and getting to medical treatments were as much as she wanted to do.  Now, life is becoming interesting again.  We are told that the left breast mastectomy and lymph node removal surgery and the following radiation is much less of a problem than chemo, so that sounds good.

My own condition is pretty fair physically and rather strange mentally.   I take large daily doses of prednisone to keep my immune system from producing antibodies that attack my nerve-muscle connection and make me weak. It works pretty good and I am mostly functional physically.  However, my mind has gone wonky.  I have developed anhedonia (this is a self-diagnosis at the moment--have to try it on my doctor next week).

For those of you for whom anhedonia doesn't ring a bell, -- hedon is a root word from the Greek meaning pleasure.   Anhedonia means "without pleasure."   Prednisone has this side effect in some small number of addicts-- it takes away the feelings of pleasure that are part of a normal life.

The technical explanation:  when we anticipate doing something we like. when we do something we like, and when we complete doing something we like to do, we get a feeling of pleasure.  This actually comes from our brain releasing dopamine into itself.   When something stops this, we lose our enjoyment in doing things--just a bucketload of chemicals being dumped underlying it all.  This includes not only our hobbies, our jobs, but eating, sex, exercise or whatever gave us pleasure turns into just a flat non-emotional, non-enjoyable dullness.

 Anhedonia is found as a side effect of some medications, is present in some folks with depression and some folks with schizophrenia, and can be found in former drug addicts.  Many abused drugs give their high by bathing the brain in dopamine (i.e. oxycodone/oxycontin pain killers gave me euphoria when I took them after knee surgery) turning on the pleasure response artificially.    However, too much of that can burn out the pleasure areas that dump the dopamine.   Prednisone, in some folks, seems to limit the amount of dopamine produced in the pleasure part of the brain--leading to lack of motivation and enjoyment until you quit taking it   Prednisone can cause other mental problems including confusion, irritation, mood swings, and so on, so folks taking prednisone may think they have strange mental conditions that are really just part of a mental confusion produced.  

My regular doctor, when I complained that I didn't have any motivation nor enjoyment to do anything, said I was surely depressed and stressed, with Margo and me both haviing health problems, and I needed to go on depression meds or seek counseling.  As I am not in the least bit sad, or down, just unbelievably lethargic, I disagreed and went to Dr. Google.  Depression without sadness search led me to pages describing anhedonia--which, I thought, pretty much fit my condition, and gave me an explanation that prednisone probably was the culprit.  

There are alternatives to prednisone for keeping the immune system running on low. So my next step is to switch to one of those as a trial--none work for everyone and some have even harsher side effects.  The process of getting unhooked from prednisone is several months -- it shuts down the adrenal glands and you have to gradually bring them back to life--and the alternative medicines take 3-6 months to take effect.   So, somewhere in March I will being trying to switch over with the goal autumn to be addicted to something else and have the thrill and agony of discovering a whole new set of side effects.    

In the meantime, if I seem to be quite lazy and accomplish little, I would hope you blame the prednisone rather than me.    Although I can force myself to do something because it is my duty, it is surely not as motivating as enjoying it.  That is why I haven't been writing much for the past few months and in fact barely doing anything other than what I must do.  

 To give you an idea of what this is like,  think of what it would be like if sex was always just a duty like shoveling the sidewalk.  I suppose I could be a good Catholic anyway!

  I call my condition "Spockification."   I have the cold, logical, unemotional, unjoyful pure rationalism of Mr. Spock from the Star Trek series.  I am in the tapering down process with prednisone, and I noticed I got irritated with a dodging and weaving driver yesterday while driving through the snowstorm to Margo's appointment--a good sign that some emotion is stirring again.  Now if ice cream started giving me pleasure again....
    

Update on Margo

Margo had her 8th chemo of the first series of 12 this Tuesday.  She is getting along pretty good--tired more of the time, but in good spirits and feeling reasonably good.

The main tumor in her left breast that measured 5 x 8 cm at the beginning of the treatment is now shrunk down to 2.5 x. 2.5  -- so the chemo is working very quickly.  The researcher thinks that the special research drug that prevents new blood vessels from growing and feeding the tumor is helping along with the taxol that stops cell division.  Both are to stop new growth, but they are making it shrink too.

About December, Margo will have some scans and measurements to see how things are going then.  The current schedule is to start another 12 sessions of chemo at that time with a different drug, however, the results of the first round may change the treatment drug or schedule for round 2.

One complication Margo is having is that her left hand is swollen.  It appears that when she got an IV into her left arm for a scan, the injection of fluid missed the vein and instead went into the arm itself, causing the swelling.  She has been wearing a set elastic wraps from shoulder to fingers to squeeze the fluid out of the hand and arm.  It has been working, although it is a nuisance to put on.  Tomorrow, she thinks they will give her an elastic glove and arm tube that will be easier to put on and off.  Most of the swelling is gone--just some in the hand itself.

Margo is staying in Pine Island now with our son Scott, who takes her to chemo.  I plan to join her at the end of October when I close the cabin for the winter this year.  With phones, email, facebook, etc., we keep in touch every day.

I am still not normal from myasthenia gravis, the auto immune disease where my immune system makes antibodies that block and attack the muscle receptors and make my muscles weak and tired.  I am tapering down the amount of prednisone I take to slow the immune system trying to figure out the minimum I need to block most of the MG symptoms, yet not have so many side effects of prednisone.  I was at 60 mg per day and now am down to 20 per day.  I have to start doing 20 one day and 15 the next with the goal of getting to 20 one day and 0 the next on my way to 10/0 in a month or two.  I may have dropped down a little too fast as some of my MG symptoms are returning, but it is hard to know if the problems are from prednisone tapering, from prednisone itself or from prednisone itself!

I have been trying to get a project at the Luck museum going--to digitize some of the records we have there and make them available on the web.  I am using a scanner and have been testing a camera to see if it can make the job faster--taking a snapshot of the document or record book is fast if the quaility is good enough.  It is something that keeps me occupied when I can't do much physical.  My first project is scanning/photographing the old Luck HS yearbooks.


Saturday I am out in the public--in Frederic, WI.  11-2 at the Frederic Depot museum with Stanley Selin to sell our history books and Saturday evening at the Frederic Arts Center 7:30-? to read selections from my books.  The evening session I share with Buz Swerkstrom from Atlas and Edward Emerson from Four Corners.  What we have in common besides writing books is that we all dropped out of the workforce while in our 50s and started alternative lives that include living economically and trying to have a few quality years of doing our own thing.  Should be interesting to hear from three dropouts!

Myasthenia Update

The MG is progressing rapidly.  In the mornings I feel it most.

May 17th  I started having persistent double vision, one image above the other.   After a series of tests at Mayo Clinic in Rochester, MN (where I  worked most of my life), I found I have an autoimmune disease, Myasthenia Gravis, a condition where your body attacks the nerve-muscle interface.  Now, almost four weeks later, I am in a treatment program, watching my symptoms progress far too fast.

The symptoms have progressed rapidly beyond just the double vision.  Early on I noticed weakness in chewing--after a few bites, my jaw felt tired.  I also overall felt tired, somewhat weak and dizzy.   This morning, I notice that even my fingers have trouble typing--sort of worn out.

I take pyridostigmine (Mestinon) as soon as I wake up.  For the first few weeks, I woke up relatively normal for a little while, but I have less time now.  I take the pyridostigmine right away with the other longer term prednisone.  Pyridostigmine takes 30-60 minutes to kick in and then makes me dizzy and weaker before catching up and jump-starting me towards a more normal day (although I suppose the side effects might be from the prednisone--will try taking pyrid first and then an hour later prednisone to see tomorrow).

Eventually, in a two hours or so, I can do physical things OK.  I am supposed to take 3-60 mg pyrids per day, but find that they wear off in about 4 hours, so am taking an extra one in the evening.  The medical information on the internet says that each person has varying requirements.  I think I might end up with 5 per day to function OK while the prednisone knocks down my immune system creating the problem in the first place.

I am debating this morning whether I continue spraying the 30 full size apple trees at Mom's this year.  I want to, but my ability to do it is questionable, especially in the morning while waiting for function to improve.

What bothers me most is the rapid increase in symptoms and weakness--going from what seemed normal 4 weeks ago to being unable to follow the garden tiller around the sand garden yesterday without several rests and feeliing like I was going to fall over.  If I get too weak, Mayo does a blood apheresis,  where they run your blood through a filter machine and remove the unwanted antibodies and clean you out for a few months improvement.

However, much of the day is better; the prednisone should soon be helping, and in a few months I hope to be functioning normally.  My brother, Ev, who three years ago went through 5 months of chemo for leukemia and now as been in full remission for several years told me "five months of misery followed by 5 years of decent living is an acceptable tradeoff."

Health Update #207

I am quite sure these health posts are getting boring, but I use this blog and Facebook as my journal, my diary, and my memory. When I want to see what we were doing 6 months or 3 years ago, I just look at the blog or Facebook and find out what I was whining about then ;-)

Birch firewood chunk doesn't wait for the splititng maul
long before rotting out.  Many of my birch trees died
last year in the woods at the cabin.  

Margo has 2 more chemo treatments.  She has 14 done.  Things are going better than expected and, other than some tiredness, she is handling things amazingly well.  With surgery to be determined in January and then radiation a month later, she should complete treatments in spring and, we are hopeful she will be completely free of cancer for the future.

She continues to be active and is baking more Christmas cookies, having only done 4 kinds so far, with a few more she wants to try. Scott is working part time at the local ski hill, mostly long weekends, and so helps with the cooking.

I am in prednisone induced Myasthenia Gravis remission.  That means the prednisone has stopped most of the bad antibody production that attacked and destroyed my muscle receptors and they are gradually growing back and I am gradually getting some of my strength back, and feeling much more normal.

Wednesday Morning Dec 4 2012  7:15 AM sunrise was quite pretty.  I took the photo standing in
the little cemetery just east of the house looking SE towards Pine Island, 4 miles away.  It is
underexposed a little to get the colors -- my digital camera otherwise tries to make everything
look like a full day time shot. Have to play with the settings to keep things from being washed out.

Now, the main problems are those of prednisone having lowered my immune system, increased my appetite, created mood swings, keeping me from sleeping, and leaching the calcium from my bones!   So, my neuro and I will, in 2013, look at some of the other long term immune system suppressants that might work OK too.  In the meantime, I am so pleased that I can see, talk, chew, walk, type, and hold up my head normally, I don't get bothered by the prednisone symptoms.    As I do have to take something to keep my immune system in check the rest of my life, and there are choices (all with problems) there is no big rush to pick the poison.

The whole immune system process of targeting enemies and ramping up antibody production to destroy them runs amuck with many folks.  There are dozens of these diseases, and most end up with some kind of immune system suppressing medication to treat, but not cure.

Scientists use the immune system as an example of evolution.  Instead of a "static" created human where things stay the same, we are evolved to meet the challenge of a world that continuously presents new bacteria and viruses to attack our body.  Our immune system responds to each attack and builds some antibodies to try to get rid of the problem.  This ongoing change sometimes runs amuck and an antibody decides part of our own body is the enemy and gears up to the attack. In my case, it destroys the muscle receptors for voluntary muscles leaving MG patients very weak because nerve to muscle communication fails.  The immune system is too often fooled, but in the billions of people on earth, each with their own unique immune system, some will do fine and others won't--natural selection.  However, with modern medicine, those of us selected for oblivion get to stay around even though nature had intended us for the scrap heap!

One of the most fun activities on bad days for Margo and I is watching TV.  Our gift to ourselves this summer as we were both laid up was a 42 inch Vizio Smart TV.  This means it connects to the Internet.  One free channel is YouTube channel.  We search on a topic and then watch a string of home made movies about the topic.   We watched topics Christmas cookies, Myasthenia, Pileated woodpeckers, nature photography and more this week.  What you see is a string of short videos one after the other playing on the TV.  Most are homemade, but amazingly entertaining and beat regular TV by a lot.  And they are free!!!!

Margo and Scott are making pecan ball cookies, the delicate ones that are rolled in powdered sugar that melt in your mouth.  They make 12 dozen at a time of most cookies.

Chemo treatment 14 Dec 4th 2012. Two more!

The old Wolf Creek School Clock is
behind Russ, who shows "prison pallor" as a result of
too little sun!  Actually my laptop webcam got
fooled by the dark room and over whitened me!
Prednisone has robbed me of my sense of humor, so
thus the stern, sober look of a Pious Lutheran. 

Myasthenia Gravis 18 months later

Remission continues for me.  A fellow patient isn't so lucky.  

May 22, 2012, I started to have double vision on top of some other physical problems (extreme tiredness) and was diagnosed at Mayo Clinic as having Myasthenia Gravis (MG).

MG is where one's immune system churns out antibodies that attack, block and destroy the connection between nerves and voluntary muscles.  The primary result is weakness and inability to do physical things and eventual death without treatment.  It is chronic (not curable, but treatable).  

After a hospitalization for difficulty breathing (yes, breathing muscles are voluntary), I began treatment to suppress my immune system and in about 6 months most of my MG symptoms were gone, replaced by prednisone side effects.  So, the next step was determining the minimum level of prednisone needed to rid myself of most MG symptoms while having the fewest of prednisone side-effects (pretty terrible).  

In tapering the prednisone from extremely high doses to zero over many months, I finally got off of it altogether last April, and now for 9 months have been symptom free without meds -- remission it is called.  For most folks with MG, it will likely to return again sometime in the future.   About 15% of people do get a long-term remission that may last months, years and decades.  

I am optimistic MG is gone permanently, although the statistics are not in my favor.  I had MG for many years before it was diagnosed--my doctors couldn't figure out why I was so easily fatigued and attributed it to being out-of-shape.  However, as I couldn't really do much active without fatigue and getting immediately out-of-breath, I couldn't get into shape. 

I attributed this to some personal moral failing--I just was too lazy, or lacked self discipline, and got to the point where I accepted that I was just lacking in this area--my fault.  My doctors reinforced this idea I was at fault as my lifestyle was not good, or I would be healthy, as there was nothing wrong with me they could find out.

Undiagnosed, blamed for my illness, and having difficulties doing the things I liked to do, life was pretty bleak.  

When, in May 2012, when my eyelid refused to stay open and I got severe double vision, the doctors were motivated to run some additional tests that showed I had MG--blood levels showed bad antibodies.  

Breathing a sigh of relief that there was a physical cause for my problems, not just innate laziness and lack of will power, I began the treatment--which took almost 6 months to get me fully mobile and functional so I could walk around and breath all at the same time. 

 MG had destroyed about 80% of my muscle receptors by that time (however they regenerate when the antibody attack is lifted).  

During the first 6 months, when things were not improving, I contemplated ending things, however, one of the support groups that kept me going was at dailystrength.org, the MG forum where people like me discussed treatments, outcomes, and railed about our years of mistreatment in the medical field.    They counseled patience and along with the stories of misery, were occasional stories of success and improvement (people who got healthy left the forum, those who didn't stayed there--so one gets a skewed picture of things at times). 

I haven't really thought about my MG for many months as I am truly in remission, and I don't want to think about it returning, but a few days ago, one of my MG fellow sufferers got a shock, that brought MG to the forefront. 

She is a 50 year old woman, a runner who ate right, lived right, and did all the right things, but about 18 months ago too was diagnosed with MG.  She chronicled her path through MG online, writing wittily of her battle to keep a semblance of regular life as a mother, full time worker and athelete.  

  I have never met her other than through her posts on the MG forum.  She took much the same treatments as I did, but her path has been to more and more problems. Her neurologist and other doctors (at the big U in MN) seemed to have no solutions for her problem and her physical ability dwindled.  She pushed her many doctors hard, and switched a few times when she found MDs who would not take her seriously.  

She is still pushing, but now they take her seriously, in the hospital, in a fight for her life from failure to diagnose cancer in addition to MG.   

In January, having leg pain, her medical team imaged for blood clots and found, incidentally, she has cancer that has spread to several organs, possibly starting in the pancreas (probably the worst possible cancer when found at her stage IV level--spread to several organs). 

She had been under the "highest quality" treatment for 18 months, at a premier medical institution and only now, when it has spread to several organs, was cancer diagnosed--and only accidentally as it showed up on a scan for blood clots.  Why so long to find this out? Who messed up?  Her future is fraught with peril as the cancer is spread, so whose fault is it for missing this so long?

Myasthenia Gravis chonicle

Two weeks ago while mowing Mom’s lawn, I started having double vision.  One week ago at Mayo the eye doctor told me I probably have Myasthenia Gravis (MG), which translates into “grave muscle weakness.”  

This week I visited the neurologist who looking at a CT scan of my thymus gland, often the root of MG said essentially,   “Your thymus is not the problem.  It has shrunk to the tiny organ that we normally see in older adults.  You definitely have MG, but it is not one that we can treat by taking out the thymus gland.  We don’t know what causes MG, but we do have a treatment plan.  The treatment can be quite life changing, but without it, you will likely progress into very serious muscle problems including inability to breathe or swallow. ”

The neurologist, Dr H., was the Chief Resident, in his last week at Mayo’s training program and headed out to Boston with his family next week to begin practice as a fully trained neurologist.  Most of his 90 minute visit with me was in testing my different muscles—how strong they were and how quickly they got tired and asking questions.  In my online medical chart he states “there is fatigability in every large muscle tested including the neck flexors, deltoids, and iliopsoas” meaning that although I can use my muscles a few times, very quickly they tire—more than a normal person.  A heck of an excuse for not doing physical work, I suppose.

MG is auto-immune, meaning your body creates anti-bodies that attack your own self.  In MG, the attack is on the area where nerves talk to muscles by creating a chemical, acetylcholine, that does the communication.  The anti-bodies appear to diminish the chemical and the “receptors” on the muscle side, if I understand it correctly.  To learn more about MG, check out http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001731/

Since this is not curable, just treatable, Doctor H discussed the two medications he thought I should have.  One is pyridostigmine, to help keep the chemical, acetylcholine, available longer (the body creates it, uses it for the immediate nerve to muscle message, and then removes it).  He said it acts quickly and disappears quickly from the body, so taking a tablet every 6 hours during the day should help my muscle weakness including the double vision. 

The other medicine, prednisone, a type of cortisone (discovered at Mayo Clinic some 60 years ago leading to the Mayo doctor then getting a Nobel Prize) is used to beat the immune system down and to reduce the production of the bad antibodies. 

About 30 minutes was used to explain all the side effects of the two drugs.   The pyridostigmine could (and does) cause digestive tract upset including the number and urgency of bathroom trips.  A few dozen other possible problems including muscle cramping are likely to possible along with drooling, salivating and a runny nose.  

The prednisone includes damage to many other systems including possibility of diabetes, significant weight gain, and what folks call “moon face” where your head begins to resemble the Pillsbury Doughboy. 

I started on pyridostigmine at 12:30 yesterday afternoon after having picked up a bottle of 300 pills, to last me for 3 months ($30 co-pay with my Mayo insurance).  After an hour I started noticing brief flashes of single vision (for two weeks I have had severe double vision that requires one eye shut or patched).  By 2 hours, I had sort of a weak single vision most of the time – with a little effort.  It was very encouraging.  About 5:30 the double vision was coming back and when I took my second pill (can take one every 6 hours during the day, and skip over night) at 6 pm, it was back.  This time in an hour or so I was mostly back into single vision so I could use the computer with both eyes and somewhat see normally at a distance.  It was still OK when I went to bed and read my book reader for 30 minutes.

So, this morning, I got up with the birds at 5:00 am, took my pill.  Most mornings I have an hour or so of single vision, brought on by the overnight rest, but then the eye muscles are tired and the whole day has been double vision.  It has been worse that way—having some normal vision to remind me of how good two eyes working together are, before changing into the one-eye version of the world.

Last night I did have some foot and leg cramps, maybe a little more intense than the ones I often get.  However, today, my stomach is churning and the bathroom calls often.  The doctor said that after a few days or so, I would likely adjust to the pills and the symptoms would lesson—so persist!

My prednisone won’t start until next week to see what the first drug  does.  “Prednisone does not immediately do anything, and you have to taper on to it.  We will prescribe 10 mg a day for the first week, then 20, 30, until you are up to 60 mg and then hold at that for about 6 months before trying to taper back down and see if the symptoms have left you. 

In the meantime, I am getting a new “refraction” the name eye doctors use for glasses prescription testing--when you have diminished vision "it is important to have glasses that work well" and see my neurologist next week, Dr. M.  

He came in after the chief resident had done the work up and checked everything over.  Dr. H is still in training for 3 more days.  He said, that as Dr. H was leaving, he would be my long term neurologist at Mayo.  He is about my age and was interested in my having worked in  research at Mayo.    

When he heard I was from Pine Island, he was interested in the chronic wasting deer found here a couple of years ago and told me a little about a similar disease in humans,  Creutzfeldt–Jakob disease, obviously part of his  neurology research interests. 

So, with a churning stomach, and 1.1 – 2.0 vision (2 meaning double, 1 meaning normal--with some effort I can see single vision) I head into my third week of the MG stage of my life, one that likely will annoy me for what years I have left, and hasten my final departure.  I have been wondering about the "on/off" switch my dad had thought about in his final years with Parkinsons.

Pearl Harbor Day

Pearl Harbor Day
Friday, December 7, 2012 |   (Taken from my postings at the Myasthenia Gravis Support Group )

Today is Pearl Harbor Day, remembering Dec 7, 1941 when the US got bombed in Hawaii and World War II for us got started.  My father-in-law, 87. enlisted in the Army and is one the veterans still left of what we call the "Greatest Generation."  He is still quite spry and does funeral honor guard duty for 2 fellow veterans each week (has been doing it for several years now in West Bend WI).  

December has other birthdays too.  My mother turns 91 December 18th.  She lives at home in NW Wisconsin on the farm I and my three brothers were raised.  She is independent and still in pretty good health despite having had to take prednisone for 30 years to treat an autoimmune disease, polymyalgia rheumatica.  She sent 100 Christmas cards this year, each with a page long handwritten note included.  When we asked if she wanted a Christmas party, she said "No, my mother had a big party on her 100th birthday and I think I will wait too."  

December 8th we awoke to winter.

Margo's mother turns 85 on December 22.  She has been in a nursing home for the past 7 years after having been diagnosed with Alzheimer's about 10 years ago. It is a terrible disease; Myrtle's body is in good condition (taking after her mother who lived to be 99), but she has forgotten almost everything she ever knew, including her family and how to eat and so on.  Now she mostly sleeps between being fed.  Her husband, the World War II vet, joins her for lunch each day and does that feeding and tries to bring her to awareness briefly--sometimes she responds a little.  He lives in a condo, having sold their large farm house in the country to help with the costs.   

My own 66th birthday is December 10th.  Last year at this time I was preparing for a knee replacement (had fallen off doing a roof and damaged my leg and knee 2 years earlier and although the leg healed, the knee did not get better--and I had damaged it skiing back in 1988 with a totally torn off ACL).  As I entered Medicare last December and had my initial medical exam under that program, I knew I had breathing problems and so had a lot of tests to see what was wrong.  Nothing was found, so we agreed I must be out of shape from not walking or doing much with 2 years of bad knee/leg and that series of surgeries, so aimed for a knee replacement in 2012.

 Those of us born in 1946, when World War II was ended, are members of the Baby Boom generation--the first year of it.  We hit 65 last year and are destined to break Social Security, Medicare and restaurants who give the senior discount on our way out!

Last year, on the 65th milestone, I decided to work on getting in better shape and losing some weight as a new year's resolution.  I was so tired and the tests said it must be because of being out of shape,   so through the winter and spring and the knee surgery (one to remove 13 pieces of leg hardware and another in March to put in the new knee) and into May, I lost 15 lbs and was getting mobile and walking as much as the knee allowed, with a feeling of great success. 

 Then, on May 17th, as I was mowing Mom's lawn on the riding mower, I started having double vision and had troubles seeing to dodge the apple trees in her orchard.  It persisted, but next morning was fine; then came back and got worse the next few days.   I had a knee followup at Mayo 6 days ahead, so while there strolled into the eye emergency desk and a few hours later, by then my left eye mostly shut, got a quick, MG diagnosis, referral to a neuro; and a week later with a positive MG antibody test was into learning and planning about a future with MG.    Things rapidly got worse and I had an MG breathing crisis early in June and spent a long 3 days in the hospital learning that with a lot of Mestinon I could function. and started prednisone--and over the past 6 months have gone from bad to moderate to reasonable to almost acceptable now. 

So, with my new knee, and again mostly functional, I come back to where I was a year ago, thinking about getting back in shape.  Over the nearly 8 MG months, I put on 20 lbs, wiping out the 15 and adding 5, so as my birthday nears, I am determined to get back into an exercise and weight loss program.  

It was quite wonderful to have lost the 15 lbs and to have found old clothes fitting again, and it is quite depressing to have put it all back on plus.  My doc says that prednisone seems to encourage weight gain by increasing appetite--and I do think that is part of the problem, as well as being depressed I couldn't do much of anything physical for most of the summer and fall.  I do find my appetite quite ravenous at times. 

 However, I don't want to use that as an excuse in 2013.  With MG no longer totally in control of my life, it is time I take on this battle again!  I have pre-diabetes and high blood pressure--mostly prednisone induced, but losing weight will surely help with those.  

December 7th, Pearl Harbor day seems like the day to start the attack, but I will weight until Dec 10th when I turn 66.   First I have to have just a few more of those 6 different kinds of Christmas cookies Margo has baked this year ;-) 

 I wonder what new tricks my body has hidden that will come in 2013.  I think my left eye is cataractously inclined, and will visit the eye people in Jan.  My knew knee is quite wonderful.  

 I suppose if my will is not strong enough to lose the weight, there is always lipo!  By posting this and telling my friends I have a goal  (it is the same as last year, lose 25 lbs over a year), the embarrassment of a public failure will encourage me to persist! 

Fall Colors

 The colors on the lake are leafing the trees and settling on the forest floor as fall progresses inexorably to winter bareness.

  A few trees, some of the oaks, have a different strategy of holding their green, to burgundy to brown all winter long and drop them in the spring.  Most things that happen in nature have a purpose and I have often wondered why these trees choose to hold onto their leaves throughout the winter--probably some advantage to their survival -- maybe related to fires or attracting wildlife (turkeys roost in them and fertilize the ground below?)
 
Saturday was interesting!  11-3 Stanley Selin, Carolyn Wedin and I were at the Frederic Museum to sell books.  We sold a few, however that was only a minor part of the day.  Another local author, Sam Jones wasn't able to make it as he was in the hospital.
    We visited intensively with many folks dropping in including Eddie Melquist and his daughter from Grantsburg (Eddie is in his mid-90s), a Wedin who was back visiting Wood River, where he was born, who came with his sister.  He works in Riad Saudi Arabia, hosts Leif Erickson and William Johnson, Ray and Myrna Lundquist of Rochester MN (who was in town to visit his sister who just found out she has inoperable cancer) and many more folks.  Stanley is recovering from a bout of shingles that pushed him into 30 lbs weight loss of a few months with the discomfort and pain.  The pain still comes back at times, but he did say he was back to his HS weight again.  Several bikers on the Gandy Dancer trail stopped by to use the restroom and to warm up from the cold wind and scattered snowflakces outside as they looked through the museum.
   I think we need a sign in Luck to route the bikers into the museum and library too--I think along with a group of Boy Scouts maybe a dozen trail folks stopped by at Frederic.  We might get them to stop by at Luck too.

   Saturday evening Buz Swerkstrom, Edward Emerson and I had a 2 hour program of reading at the Frederic Arts Center down by the lake.  A dozen or so local folks stopped by to listen.
   An old Atlas friend I got to know in college, Scott, came--hadn't seen him for 40 years or so.  Gov. Walker encouraged him to retire from his teaching/guidance counselor job and he moved into Frederic after having lived in SE WI for most of his career.  He looked just about the same, maybe a little more serious than I remember, but time has been good to him.

    The Saturday  program was each of us reading excerpts from our writing.  Ed was the most polished--he recited poetry and essays in a measured and dramatic voice--practiced and quite effective I would say. Buz read excerpts and had a few two person dialogues where he and Ed read parts --including Masterpiece Wrestling where a PBS like announcer interviewed a literate wrestler -- whimsical, erudite satire, I would say.
    I read some of my humorous fluff including "Sex Education on the Farm."   I think we knew most of the audience, and they seemed to enjoy our attempt to raise the cultural level of Frederic for a short time.  I sold a book and gave a couple to the Arts Center for their library.

   I parked my truck and trailer load of pumpkins and squash along hwy 87 up the hill from the cabin and sold $50 of stuff over the weekend.  I would have had more, but it appears someone is checking the cash jar more often than I am as even my $5 in ones I left for change was gone.  A neighbor told me that there was $30 in cash in it in the afternoon when they stopped by and bought some, but when I went to pick it up in the evening it was empty.  Hopefully the person who is redistributing my wealth is using it for rent or gas to to go work payments rather than drugs.  I choose not to let this bother me other than to reflect on it--if you do sweat these things then you would have to make steel money lockboxes and your mental health would suffer.  Luckily my own next gas tank fill does not depend on whether I sell enough pumpkins or not!
 
    The lake has been home to swans, geese and ducks nearly every day.  Evenings large flocks of geese come in, to leave again and spread over the local farm fields freshly harvested.  I walked over the corn fields at Mom's with brother Ev yesterday. Kernels of corn and an occasional ear missed leave a lot of food for wildlife to eat before it becomes buried in the winter snows.  Every day the geese, turkeys, sandhill cranes, deer and other wildlife is out on the fields -- some in the day, some in the evening and some at night adding to their winter fat supply.

   My own winter fat supply has been increasing too.  I had done quite well on a diet up to May when I got myasthenia gravis and started on high doses of prednisone.  Prednisone has side effects of increasing your appetite, decreasing your mental control, and allowing your body to more efficiently store fat.  Between that and being almost fully unable to do any excercise of anykind including walking for a few months, I have almost gained back all of the 12 lbs I worked so hard to get rid of since last December.  However, I am on a much lower dose of prednisone now, I can get out and walk around an do some things physical again, and my motivation is strong--my new pair of pants bought in May won't quite fit now in October--so I am getting back at it again.
 
 When I got the myasthenia gravis and was told it was an incurable disease and I was so limited in what I could do and even see, for a time I was pretty much of the attitude that life was probably not worth continuing--however between getting used to lowered functionality and improving quite a bit, I guess it is worthwhile hanging around a while longer so I have to get back to my diet!  I did have to alter it to drop most sugar things as the prednisone pushes one into diabetes otherwise, but I substituted fat (cheese, bacon, etc)--when I should have moved to fruits and veggies.  Oh well, as of today I probably will do better.


   With Margo getting cancer and having a year of treatments to go through (and she is doing very good so far), it will change our winter plans to go south--we will be in SE MN instead at our home there.  Margo and Scott are there already, and I will be there from Nov - March or something like that.  I prefer being up here as I have a lot of things I volunteer for or participate in, but with the internet a person can connect even at a distance.
 
    I have had many folks tell me they miss my River Road Ramblings column in the Inter-County Leader.   I usually tell them I retired having run out of things to write about. I had a weekly column there for 7 years and retired it as of the end of December 2011.

  The retirement was because the Leader changed polices for me; I was to quit pushing commercial events/books etc as part of the column; I could no longer have a local sponsor ad in the column either.  Both policies were to get more money for the Leader by having anything that looked like an ad be paid for.  When I did the column I asked for money, but the Leader told me the only way I could get money was to get my own sponsor --sell and ad that went with the column and I could get the money for that.

 I hadn't done it only sporadically over the 7 years, but as of 2012, I managed to get one for 6 months.  I made a deal--for running a small ad in the column, he would make a donation to the Luck Museum.  I liked it because I was a "paid" writer; I liked it because it brought in some money to the museum; and so I planned to do the 2012 year of columns quite happily.  However, the Leader changed it's mind and policy--no ad, no pushing commercial events (i.e. the River Road Ramble), and so I wrote a column explaining that and retired.  The Leader didn't print the retirement column.

The Leader believes that it can get enough writers who will write for free that they don't want to set a precedent of having non-staff writers get paid.  Of course, as they are a co-op with a board of directors, and membership in the co-op costs you $5 with an active subscription and they have an annual meeting coming soon, the shareholders could push changes to the policies.   I actually prefer the blog route as I can do photos, videos, unlimited posts and so on without having editors changing, chopping and turning "hell" to "heck." However, many of my most faithful readers don't do the internet and tell me they liked the mixture of history and BS I brought to them each week.
  For a detailed look at why the Leader and I parted see:
http://riverroadrambler.blogspot.com/2011/12/rambling-out-of-newspaper.html

Unbearable Happenings at the Cabin

Back at the Cabin again today after almost two weeks of medical appointments.  A bear has rummaged through the area knocking over lots of stuff and generally making a nuisance.  He dug up all the Jack-in-the-Pulpit bulbs under the plants by the cabin and the potted ones I had planned to move.  Guess they must be edible.

I have been on prednisone to slow down my immune system building the antibodies that are causing myasthenia gravis, weak muscles.  The biggest side effect that is noticeable to others is what is commonly called "moon face" where your face fattens up.  I took a before photo and then one after 3 days--don't think it is doing much yet.

The Rambler is taking prednisone for his Myasthenia Gravis.
Can you notice any side effects yet?  Before is on the left. 

The gardens have jumped with some great fresh lettuce to pick.  We have to get the hoes out.  I took the old Cub cadet with the back cultivator and did the pumpkin and squash garden both ways.  I planted it so the tractor would drive through up and down the rows, and then cross ways--like the farmers in the old days when they "checked" there corn to cross cultivate. 

Went to the Northwest Regional Writers meeting this afternoon after dropping the 91 Olds off at Jensen's garage in Cushing to replace one of the exhaust pipes up front that made driving from Pine Island to Cushing a real noisy ride.  He had it done by 5:00 pm.  

The writers got a proof copy of the anthology of poems and stories we are planning for this fall.  It looks like a good book, even though it is only half there and needs a lot of editing.  The 5 proofs cost a total of $20 through Amazon's createpace.com including postage and came in seven days after I sent the file in.   The title is being mulled over--titles are the most important thing in getting a person's attention to pick up the book and consider buying it.  

We dropped over to the Luck Museum to see Marilyn Berg who started working there this week.  The museum is open Monday 1-4, T-F 11-3:30 and Saturday 10-1.  The brand new geology of Luck display and rock collections are finally all out and on display.  The photos of an old barn in the neighborhood are also on display.  Should be an active summer. 

The rest of the evening has been spent picking off wood ticks.  In Pine Island there are none.  Two years ago, due to a single deer with Chronic Wasting Disease, 1000 deer in the area were shot off.  The tick count there is zero!   I suppose the glut of deer around this area (the sand barrens with 10 miles of woods on the west and the farm fields and pastures on the east) causes so many ticks.  

Saturday Margo and I volunteer at the Luck Museum and Sunday we visit Mom for Sunday brunch.  Then Margo heads back to Pine Island and then down to her parents for father's day and I head back for another appointment on Thursday at Mayo.  They need to keep increasing the prednisone dosage to get rid of my MG, and they want to check to see if they are going too fast.  Too fast and my head will blow up rather than just stretch.  

Nice to be back in Wisconsin where the ticks, mosquitoes and now deer flies are flourishing.    Oh, by the way, we planned to pull my new trailer up north, but getting it out on the road it started swaying back and forth terribly.  My guess is one of two things: I loaded it with too little weight on the front or I built it backwards on the axle and wheel set (I got the toe-out forward rather than the toe-in to the front).  Tried to get Margo to ride on the tongue while I took it up to 40mph to see if extra weight on the front would help, but she was notably uncooperative.  Since she turned 65 last week, she has been real bucky.  

Margo's Radiation Begins

Yesterday, Margo had her radiation treatment setup for the final phase of breast cancer treatment.   She starts the treatment on Monday afternoon and continues 5 days per week until June 10th.  

Margo is getting along pretty good.  Her father was up to visit early in the week to make sure she is OK.  Her father turns 88 in mid June.  He just traded his last year's model Ford Focus for a new a Ford Fusion.   He and Scott spent a while trying to figure out how to turn off the emergency blinkers.  There are few knobs or buttons--most things are controlled from a touch screen computer.  

The Polk County Fair book is available online and probably in local banks.  You can find it at http://www.polkcountyfair.com/Fairbook.php  Entries are due June 12th for the Fair beginning July 24th (entry day).  Entry cost is $6 and you can enter from 1 to 23 items for that $6.  Plus it allows you free entry to the fairgrounds for the whole 4 days of the fair!  Not only that, you may win some ribbons and money.  Margo and I always enter a bunch of things and more than make back our $6.  

This year, the Sterling Laketown and Eureka Historical Society hosts the Red School House on the fairgrounds for the Polk Co History Society.   We are hoping to get each of the local history societies to participate with an exhibit and some time in the school house.  It is a great place to rest up as the only air conditioned area at the fair with free ice water and cookies and a chance to visit an 1850s school house!

Down here in Pine Island for a few days, to make sure Margo gets into radiation smoothly, I am taking it easy and waiting for next week's warmup to head back to the cabin and bottle 30-40 gallons of syrup waiting for me.  We ran out of wood slabs for cooking sap, so have to remember to order another load this spring.   

I have been off of medications for Myasthenia Gravis for a month now waiting to find out if I am in true remission or if MG will come back.  I was taking prednisone to stop the immune system from making the bad antibodies that attack my nerve-to-muscle connection and make me weak.  So far the MG has not come back, but the withdrawal from prednisone has been difficult, as my muscles and joints ache and are sore so without ibuprofen or other pain killers, I walk around like a much older man than I really am.  Supposedly, my adrenal glands have been shut off by the prednisone I took for 10 months to stop the MG, and they have to get started again to produce the normal cortisol that will again let me feel only the normal 66 year old aches and pains rather than what I have right now.  I am waiting for that to happen and also waiting to see if MG returns.  Another month or two and something will happen--just uncertain what.  In the meantime if you see me creaking around, offer me a couple of aspirin.  

We had another 2 inches of snow this morning on top of the 16 inches yesterday.  Quite a few broken off branches to clean up and still light snow coming down.  We set a record here in the Rochester area for most snow ever in May.  The snow doesn't really bother us too much, but yesterday, having the electricity off from 5 am until noon showed us how unprepared we are for losing the juice.  Our only heat is a propane furnace that requires electricity; our rural well requires electricity; we found a couple of scented candles and flashlights with the batteries already haven eaten out the metal, so need to make a trip to the local hardware and stock up.  Probably a generator would be the most useful--although we would have to put outlets and plugs for the furnace and well.   Luckily, in a few days we will forget all about it and be just as unprepared next time. 

Panting Problems

Feeling pretty good today! My MG has been mostly under control for a few months, and I have been optimistic that I will have a good year not too badly bothered by MG. However, in the past 8 months I have been quite disappointed with myself for adding almost 20 lbs!

Before drooping my way into MG, I had been in a weight lost plan that over 6 months had dropped 15 lbs as part of a goal to get 25 lbs off.

And then along came prednisone ( Click for the soundtrack ) My neuro said "you will really have to watch your diet as prednisone increases the appetite and seems to make it easy to put on extra pounds." Boy, she was right.

Of course, it isn't all my fault. Margo went into chemo shortly after I started prednisone, and was told the opposite-- "you must eat high calorie foods--force yourself if you have to." So we bought lots of tempting food to help convince her to eat when she felt sick. It has worked for her--she only dropped a few pound so far (chemo done, surgery and radiation next). Having all the extra food around tempted me too much, and of course I had to set a good example by eating with her.

So, feeling terribly fat again only 8 months after having thinned down some, I have been beating myself up for not having enough will power to diet and exercise enough. MG was an excuse, but not really so much anymore as i can exercise everything but my willpower.

But, yesterday, I think I solved the problem! I went to town and bought a new pair of pants, one size bigger than the ones I was wearing. They are quite wonderful! They are even slightly loose, It appears I judge my weight by how tight my pants are around the waist. Now, with the bigger ones, I find that my breathing is easier (the tight pants were limiting the diaphram movement, I guess), and my mental attitude is great, not being reminded by tight pants all the time.

And, you know what-- there are still even bigger waist sizes on the shelf! So, life is again comfortable and the pressure to lose weight has been relieved!

Of course, this won't last as I have an appointment with my family doc in mid February (my annual physical) where I will surely be hassled greatly about my regression. I wonder if I can lose 20 lbs before seeing her? Gotta stop now, Margo wants a dish of ice cream, and as a good husband, I need to support her by having one too.