Here again

Yesterday was a good jumping off point to get back to the blogesphere


Before I begin, though, I want to thank Julianna Schoeder  who let me know about the article I shared yesterday.  Here is her response and a link to her blog about old Munichsburg

The article was first posted by the Old Munichburg Association and was subsequently shared by Historic City of Jefferson. It was written by Walter A. Schroeder, recent past president of the Old Munichburg Association, who grew up a member of Central Church.

The article is excerpted from Schroeder's forthcoming book, "Southside Sketches: Essays on Jefferson City's Old Munichburg." It will be available in a few months from the Old Munichburg Association. 

Here is a link to her blog  http://munichburgmemories.blogspot.com/

I am looking forward to the reading the book!

The point of this blog was originally a way to let people know about life with Multiple sclerosis and to give me some sense of purpose since my working life has wound down.  Instead, yod blog has been all over the place, and, frequently its purpose is merely to let my Facebook peepsknow I'm still alive!

I've written about my family, my emotions, my understanding of God; thrown in a little politics, and done tons of life review.  Oh!  And a little about life with MS thrown into the mix. 

Now I actually think I  see a direction and an endgame for my aimless ramblings.  One reason to write more frequently is to try to actually be able to call myself a true writer with a body of work.  I know I can do it.  I wrote a poem about my dog every day for a year, don't forget.  That was stupidly difficult, but I did it.  So why cant't I make a habit to blog everyday?  T
I have to let myself think it's okay if they not so deep all the time (As if the ones I do now are !)  

So for today I will leave you with the PROMISE that I will be back tomorrow!  See you then!

Perfect day to blog 

Actually, everyday would be a good day to make myself write something.  I have no problems making a habit of playing Words with Friends, or working a virtual jigsaw puzzle every morning.  I've even managed to make a habit to go yo Yoga 4 times a week.  But writing still feels like a chore.  The actual typing is a killer, but it also requires using good grammar and correct punctuation not to mention coming up with interesting (sorta) things to say and entertaining (sorta) ways to say them).

But today the official word came out. It was a rumor, or a an unconfirmed possibility,.  But now it's fact and apparently final.  They are tearing down the old parsonage in Jefferson city!


 The news is just another layer in my need to become aware of the ethereal quality of life and mortality..  The sweet little home where I experience coming-of-age has been declared unworthy of renovations.  It is being relegated to the heap of :used to be" building; beloved by those who had the opportunity to experience her, but not enough to warrant a full overhaul for those who are financially responsible.  It has too many problems, some of which were probably there when we were!

For now,  I am remembering the list of firsts in my life that occurred at 713 Washington. First crush, first date, first kiss (none are the same person).  Remembering the laughter and the arguments.  The pain of unrequited love;  Practicing the cello in the living room and switching over to the piano to pound out melodies of all the song from the Reader's Digest song book.  I would sit there and sing for hours!  I learned old standards; songs from movies and Broadway, and everything else I could find. It must have made my parents and sibling nuts!  But no one ever stopped me.  Love, love, love in that house.
We had sleepovers -or bunking parties.  JC was just far enough south for that name.  Boyfriends, best friends, frien-emies,  all made appearances there.

It was a sad day in 1981 when I watched my parents leave for their new house in St. Charles. I stayed behind with  the stuff I was taking to college in Kansas City on the opposite side of the state.  It made no sense for me to drag everything to St. Charles only to drag it back a week late.  So I stayed by myself in the dining room using the beautiful pocket doors to give me a sense of cosiness and safety.  I said goodbye to old friends.  Went on a date with my long-time off and on crush one day, and went on another date the  next with the guy who seemed out of reach for so long.  He's still in the top two of ones who got away!

When you're 18 years old, embarking on a who new journey in life, it is hard to comprehend the significance of small things.  It's hard to see the conveyer belt of life moving you a little closer to mortality and finality.

But as a firmly middle-aged grown -up, I am able to see losses and goodbyes and send offs through the lense of longing and wisdom and, ultimately, the beauty and magnificence that is life.

This is the article and some pictures from the Jefferson City Historical society  I hope I am not breaking any laws by putting on my blog!  I am bolding the whole thing so you know it is not mine!!
I'm sad I didn't know half the things it says about the house in that article!

Here's one more story about that house.  Birds used to stay in the chimney on the migratory pattern in the fall (maybe spring...I forget). They would roost in a tree in the day time, but then,one by one, the would circle up to the sky before diving into the chimney. the would star slow, but after a while there would be dozens of birds diving in. It was avery good idea to keep your mouth closed if you were standing close to the house to watch!  More than one person was baptised by bird poop!

One more thing.  I sincerely hope they salvage all the beautiful wood and architectural details.  If they do, I hope they let me buy the
rose window!
Enjoy the article!

Disheartening Breaking News! Central United Church of Christ has just voted to DEMOLISH ITS HISTORIC 1898 PARSONAGE. The vote was made at a congregational meeting after the 10 a.m. service, May 1, 2016.The cost of rehabilitating the structure was estimated as roughly twice the cost of tearing it down. Architect for the Queen Anne-style building was Charles Opel, who designed many of Jeff City's notable buildings. Read the below for its history--an essay written in 2015 by Walter A. Schroeder:

Central United Church of Christ in Jefferson City in 2015 announced its intention to demolish its vacant parsonage at 713 Washington Street. Should this happen, we all will miss this wonderful, historic residence in the very heart of Munichburg. A brief history and a taste of the lore of the 117-year old parsonage is appropriate to inform us of its importance to Southside.

It is not the congregation’s first parsonage. Shortly after the immigrant German Protestant congregation was organized in 1858 and built its church in 1859 on the hill on the corner of Washington and Ashley, it hired Reverend Joseph Rieger for its first pastor. On the day he arrived, the congregation decided to build a parsonage next to the church and directed the new pastor to design it. It was constructed of brick on a limestone foundation and built directly on the front property line, which was the custom in the old country. It was similar to other simple German-style cottages being built throughout German-speaking Muenchberg at that time, like the Hess house across Washington Street and the Buehrle house across the alley on the north. It was finished in 1860. Reverend Rieger cared for Civil War wounded in that parsonage, while at the same time it was home to his family of five daughters and two sons. During the war, “Southern” ladies of Jefferson City entrusted jewelry and other valuables to the pastor for safekeeping in the parsonage. Reverend Rieger also married former slaves in the parsonage (identified as Farbige, or “colored,” in the marriage register). Reverend Rieger died in 1869. All of his next six successors and their families also lived in that parsonage.

In 1891, the congregation, having outgrown its original church building, built a new one, the present Gothic church with the tall steeple. That was during the time when many of the original small German cottages built by immigrants in the surrounding Munichburg neighborhood were becoming obsolete. Their prospering children replaced them with more modern, larger, American-style residences. Joining in that trend, Central’s congregation voted May 1, 1898, to replace its 1860 parsonage with a new one in the same general Queen Anne style as other Munichburg residences then being built in the neighborhood. This is the present parsonage now being considered for removal. Charles Opel was the architect. It was completed before the end of 1898 at a cost $3,109.33. The congregation had instructed Pastor Theophil Mueller to collect funds for its construction—for his own residence—and he raised money well in excess of the final cost. Just a few months earlier, Charles Opel also had been architect for congregational member and city councilman Henry Asel’s residence at 210 Lafayette Street, which was nearly identical to the parsonage. Could Asel’s residence have influenced the choice of style for the parsonage? Asel’s very similar 1898 house still stands and is in excellent condition.

The new parsonage for Central Evangelical Church (the congregational name at the time) was built on the same land the old parsonage sat on, but this time set back twenty feet from the property line, conformable with the American style for front yards. The parsonage measures approximately thirty feet wide by fifty feet deep, with two-story bay windows on both the north and south sides. The main floor has a large front hall with open stairway and beautiful banister, a large living room facing the street, large dining room, kitchen with pantry, and a spacious pastor’s study with bay window facing the church. Abundant woodwork shows high-quality craftsmanship. The second floor has four large bedrooms and bath (a “porcelain bath tub” was specified in the contract). The ceilings are high! A full basement extends underneath the entire house. Except for the limestone foundation, the residence is built completely of brick. Fred Buehrle, a member of the congregation, was responsible for the brickwork. The congregation paid members Ernst Braun and a Mr. Schwartz for construction work. Foundation stones and bricks from the original 1860 parsonage were probably recycled into the new parsonage.

The original small, ornamented, wooden porch at the front door (Germans were known for decorative entranceways) was replaced in 1914 by the present, much larger, brick-pillared porch that wraps around the south side. Also in 1914, water usage was put onto a meter, because the frugal congregation wished to save on the flat-rate monthly fee then charged for residences. The coal furnace was converted to a gas furnace in 1954.

In 1915 the congregation put in a driveway along the north side of the parsonage and built a garage (at a cost of $131) for the newly arrived pastor, Reverend Paul Stoerker, who was the first pastor to have a car. The concrete driveway and garage served as the ceiling for the church’s bowling alley, dug out and built 1920. The bowling alley was entered through the adjacent Sunday School Building. The remnants of this structure, demolished in 1981, butt against the parsonage’s basement wall and are causing structural problems with the parsonage today.

Over the years the parsonage gained many stories to tell. During Reverend Berlekamp’s pastorate (1923–1939), 151 of the 191 weddings he performed took place in the parsonage. On one busy day, four couples were married there! During World War II, Reverend Henry Damm’s wife, Esther, and their two daughters often served as witnesses for marriages hastily arranged for servicemen home on short furloughs. While the war was being fought, the discovery of an abundance of four-leaf clovers in the backyard of the parsonage led to sending one of the lucky charms to several dozen members in military service.

In his memoirs, Reverend Damm recounts an incident during the days of racial tension in Jefferson City, around 1950, while the city was still strictly segregated. The nationally famous mezzo-soprano gospel and classical singer, Rosa Page Welch, came to Jefferson City for a musical performance. Arriving by railroad late with an entourage of six or eight people, the African Americans could not find any place that would serve them food. They needed someplace to eat and relax after their long travel, and Reverend Damm invited them to the parsonage. “So,” in the pastor’s own words, “if anybody knows my Esther, you will know that within 30 minutes she had quickly gotten together everything we had in our kitchen and had a marvelous meal for about a dozen of our black friends and there probably never has been and never will be again such a beautiful evening of classical and church music as was held in that parsonage that evening.”

The Damms’ younger daughter, Nalora, had the bedroom facing the church. As a teenager, she longed to “sleep in” on Saturday mornings. However, Carl Burkel, the musical prodigy well-known to all in Jefferson City, would begin practicing on the church’s powerful Moller organ at 6 a.m. With the facing windows of both parsonage and church wide open to let in cool morning air, Burkel’s booming chords and octaves of Bach’s D-minor Toccata shook teenager Nalora out of bed. (Nalora went on to sing on the Metropolitan Opera stage and for presidents in the White House. She is now professor emerita at the renowned Berklee College of Music in Boston.)

Every pastor’s family complained about the “roar and rumbling of the bowling alley” underneath the driveway just below the parsonage bedroom windows. Bowling could go on well into the night. And several teenage PK’s (“preacher’s kids”) later admitted leaving some marks on ceilings, walls, and woodwork.

Naturally many updates were made to the parsonage since 1898. Knob-and-tube electric wiring had to be improved and the electrical system expanded. Since the original parsonage was built without closets, they had to be constructed in the large bedrooms. Until 1948 the women of the church were responsible for redecorating and cleaning the parsonage from attic to basement twice a year. The women also raised funds for repairs and painting, interior and exterior.

When Reverend Stephen Buchholz and his wife, Becky, moved into the parsonage in 1982, the aging parsonage could no longer be considered suitable as a residence for a young family of the late twentieth century. The neighborhood had transformed into one of rental properties with attendant safety issues. And, like other ministerial families, the Buchholzes wanted to own their own home and thereby have the ability to gain equity in it for time of retirement. Fortunately, Reverend Buchholz was on the board of the Evangelical Emmaus Home for developmentally disabled people at Marthasville and saw the opportunity to convert the parsonage into an Emmaus group home. Central Emmaus Home opened in the former parsonage in 1991. It became the home for five or six developmentally disabled men and was a mission of the church. The residents participated in congregational life.

Central Emmaus Home closed around 2010, and a short while later the congregation leased the parsonage to Calvary’s Gifts, a resale shop for the benefit of Calvary Lutheran High School. But Calvary’s Gifts outgrew the parsonage’s space and moved a block away to 722 Jefferson Street in 2014. The venerable parsonage building has been vacant since, awaiting its new fate.

Sister

Before I begin my real blog post, I want to give the reasons for being absent so long

1.  I started this blog in an attempt to justify my existence when I thought my private practice was tanking.  Every time I figure its a forgone conclusion, I get a referral so I get busy

2.  I hate typing and Dragon is not as fabulous as I thought.  I'll dictate "under no circumstance"  but I will get "udder know surgum stasis" and I'll just have to fix it anyway

3.  I always think of something else (usually play a game or go shopping) that I would rather do

There are more reasons, but they sound whiney and irritating when I think of them, so I'll spare you

Here's the reason I'm back today

I missed sister day on Facebook and I wanted to make up for it.  I actually think my sister deserves better than a blurb in my status.  The relationship I have with my sister is glorious and complex and complicated and wonderful.  It, too, deserves more than a FB post.

I know I have written about my sister before so you are probably aware that she is an actor and an acting teacher.  She is also one of the most beautiful people you will ever meet in real life. She is intelligent, funny, kind, and did I say beautiful?  Sheknows how to challenge and motivate students in classes at her private studio and with her high school students. She creates and produces shows with limited budgets and resources.  In other words, she is the whole package..pretty close to perfect.

she was pretty gorgeous even as a as a baby

My very first memory ever was of my sister. I thought we were playing hide and seek, but apparently she had taken a potty break.  When I found her "hiding" on the toilet, she let me know we were no longer playing by reaching out with her foot and slamming my finger in the door, severing the tip of my middle finger and prompting a trip to the emergency room where my finger tip was sewn back on just a little crooked.  Any future dreams of becoming a hand model were thwarted. 

  

Most of my earliest memories revolve around my sister. 

I remember an Easter egg hunt when I followed her around looking exactly where she looked for hidden eggs.  She missed one or two, but needless to say her egg count was much higher than mine.  That was a pretty good harbinger of things to come.

Being in Beth's shadow was just inevitable.  Once were were going to Six Flags or some place like that and the person in the ticket booth told Beth she was the prettiest little girl she'd seen all day.  I'm sure my parents said something about both of their girls being beautiful, but the message was clear.  Beth was the pretty one.

I didn't have any animosity about her  beautifulness then  It was just so obvious to me that she deserved that title.  She had a heart-shaped pixie face, and her eyes were huge.  My hair was stick straight and my head was shaped like Charlie Brown  I had curly hair only after sitting through being given a torturous, stinky permenant by my grandma. Thankfully, I don't have any pics of that particular frizzy hair don't that probably just pointed out my perceived homeliness.   

But, being beautiful was only one thing that made Beth so intimidating and wonderful as the same time.  She was the best playmate, coming up with the most creative and imaginative games, mostly involving acting and putting on shows.  She was also my biggest defender.  Don't get me wrong, she could be as cutting and cruel as any other big sister in the world, but when someone was picking on me she would put a stop to it.  She even defended my when I was just being a brat.

We had a backyard swing set.  One day when we were playing, some neighbor kids came over and tried to use the swing.  I don't know what was bugging me but somehow, it just didn't sit well with me and a had a screaming crying tantrum to get those bewildered kids of my damn swings.  I was sitting on the swing pouting as I listened to my sister tell those kids a very made-up story of those swings being given to me by some dead aunt or something.  I don't remember the exact story, but I do remember being very impressed with her ability to come up with and deliver such a convincing lie in order to save my reputation from being the neighborhood brat.

I could go on and on ad nauseum about grade school, high school and present day squabbles and rivalries and ultimately loving and fabulous memories.  I may write more of those stories later, vut for now, I want to just tell you this about my sister.

She is better than me in every way and I begrudge her none of it.  She is more beautiful, smarted, thinner, more talented and accomplished.  But I have one thing on her.  My hair color is still natural, and she has to dye hers to cover the gray!  Thanks for being my best friend!

Yesterday was a good day.  One thing actually happened, and the other was a good discovery

I want to make oyster stew on New Year's day.  It's supposed to  be good luck, but I just want it because it's yummy. ( Milk, cream, oysters;  how could it not be good!?).  So Eli and I went to a new (to me ) grocery store that has oysters and duck (I also want to make duck l'orange.  Duck breast is one of the main reason I still eat poultry!)

I am not naming the store because I want to keep my semi-guilty feelings to myself.  If you know the store, you may feel like reporting me or something, even though I didn't do anything illegal.

The butcher shop also has seafood.  It is not self service.  The poor girl waiting on customers did not have any help which is probably why the good luck thing occurred.  Oyster stew call for 2 dozen oyster (my recipe does, anyway).  They only had un-shucked  blue point oysters at $1.29 each. Yikes! 30 bucks! Oh well, it's once a year.  First the butcher/seafood lady told me she didn't think they had any oysters even though I was looking as them in the display window. After I pointed them out, she put 24 of them in the bag and put the price on them

We also got a big old duck which was 6 pounds at 3 dollars a pound.  This was turning into an expensive experience, but, again, it'sonece a year.  We got a few other things, but couldn't find shallots.  Someone will have to make a trip to Trader Joes (that not where we were, btw)

When we went to check out, the man in front of us actually was buying shallots.  Maybe he got the last two in the store.  I wasn't really paying attention to the clerk as  he ran everything through, but when he got to the oyster, he said "This say $1.29.  That can't be right."  I said, "Yes that was the price, and I got 24."  He said, "Okay, that's what is says."  I thought he was commenting on the high cost of making oyster stew, but when he gave me the total for the entire order ,  he said "Your total is $24.75."   He had rung up the entire bag of 24 oyster as $1.29.  For 24 oysters. I paid the bill and calmly walked to the exit.  Eli started to say something about the cost being awfully low, but I told him to shut up and keep walking.

So that is why I feel guilty about my good fortune...but not guilty enough to go back and fix their mistake.  I am just thinking that this oyster stew will be the most lucky one we've ever made.  I have decided that, to ease my mild guilt, I will think of this as a flash sale of buy one oyster and get 23 free.


My good fortune continued with my discovery about some earring I already own.  A few years ago, my mom gave me a bunch of bead leftover from her bracelet making craze.  Actually, I think she was going to throw them out and I rescued them, thinking I would use them for play therapy.  But when I looked through them, I realized they were really cool and starting making my own stuff.  Because I can't keep myself from thinking I need to accumulate even more stuff than I need, stuff, I started scouring thrift stores for jewelry I could take apart and repurpose.

I was in Jefferson City visiting my parents, and found this big old vase stuffed with jewelry.  It was $30, but It was really cool and I figure it was cheaper than buying actual beads at a big box craft store.  I was right about that, but I also discovered some really good jewelry amongst the stuff to take apart.  In that first vase, I found three stretch bad rings that retail for about $7 each and a 24 K gold chain.  I was hooked!

The Goodwill near me is close enough that I could walk to it , if I could walk.  I buy a lot of stuff there.  I buy almost all my tops and sweaters there.  I've found at least 10 really nice cashmere sweaters there.  I'v also discovered the art section.  There is a lot of crap in the mix.  Bad poster, prints from target, and a few paint by number on velvet.   However, I have found tons of originals including original oils and water colors and several signed and dated lithographs.  One I saw listed at an art gallery for $300!  Quite a good return on an investment of $4.

 But now comes my good fortune from yesterday.  I have probably ended up buying about ten of those vases full of jewelry.  I actually really do use the beads and other finding in my own jewelry making.  But in a few of these thing I found silver and gold chains, sterling silver bracelets with gemstones and some very nice earring.

With many of the earrings only one of a pair has made it into the vase.  Lots of times they have a Clairs tag on them or they are just hideous  .But this one pair....

I found the first one, and immediately felt how heavy and well-made it seemed.  It was covered in some white substance that I do not care to found out what it was.  I gave it a basic cleaning.  It looked and felt like silver with a brass X on top.  I finally dug through the vase and found the second earring.  I thought they were pretty enough even with someweird substance on them  They're pretty heavy, so I took them off and put them in my pants pocket.  I then sort of forget about them until I emptied the washing machine. Ooops...

They were pretty clean after their trip to the laundry.  I could see that there was a mark inside.  It said 14K.  Now, I know that silver is marked 925, but never 14k. Maybe this had gold on silver instead of brass!

Sometimes I am able to find things on ebay that are pretty comparable to some of my finds, so I tried my luck  with the earrings,  Searching for silver and 14k hoop earrings

Guess what!  I actually found the exact earrings, and then guess what?  Someone is asking $650 for the very same pair!  Score!  I will no longer feel bad about spending $30 on a vase of "junk" jewelry!

Here are the earrings on the left along with a silver ring with fire opals and a silver and gemstone bracelet

Hello

It's been awhile.  I have been over-thinking.  I have been dithering about subjects to explore and whether I can be interesting or deep or insightful.  I have lost the essence of blogging, which, to me, is to write what is on your mind... and I have a lot on my mind,  I am political and emotional.  I am concerned about my future and whether I am doing anything that matters.  I am wondering where my life is going and how will I  manage my increasingly more annoying and debilitating MS symptoms.

So rather than trying to come up with some interesting topic for you, my small and simple blog, I am going to try to make this an actual blog and give you my current thoughts feelings and occurrences. I don't want it to be a diary because my day to day life is just not all that interesting.  

So here is what is on my mind right now

I have come to realize that I have two of the most n-sentimental men in my family.  My husband used to be at least a little enthused by things like birthdays and Christmas, but somewhere along the way he became a curmudgeon extraordinaire!  We put up a tree for Christmas, but the rest of the decorations sit in unopened storage bins.  I know what the problem is, but he won;t say it  even if he is aware.  He is the one who does the lion's share of the work.  If I do it, he gets mad because he is concerned that I will hurt myself or break something.  But if I don't do it, it doesn't get done.

My son is not much better.  We left his ornaments off the tree until he got back from school, and I had to basically beg him to hang them up on Christmas Eve.  Plus, he couldn't come up with anything he wanted as a gift, and he  s not the most gracious gift  recipient.  Where did I go wrong?!

We went to see Star Wars on Christmas day.  We saw it at the I-Max in 3D which was way cool.  Dana got miffed at me for eating popcorn.  I know the sound was annoying him, but it is annoying to me that he didn't just suck it up or eat some himself.  It is unnatural to not have popcorn at the movies!.  I really wanted to get a picture of the three of us in our 3-D glasses, but there was not even a glimmer of cooperation for this particular photo op.

So as usual, my friends and family have lovely pics of festive homes with big family dinners and general Christmas frivolity, and I got nada.  

All right.  It sounds as if I don't appreciate my family.  I do.  They are phenomenal in so very many ways, and I am no picnic for them to manage, I am sure.  Just need to vent regarding my sad little holiday celebrations.  There are more important things than Christmas decor, most of the time!

Hello again

Here's something to know about me.  When I disappear for a long while, it is because I get into a low place.  Not depression, because I still able to function and do what I need to do,  Ie,  change my self talk, distract myself, etc. I can's say that just chucking it all and leaving the planet hasn't crossed my mind, but there are just too many things to consider and by the time I do consider them all, the idea has passed.  Plus that Dorothy Parker poem plays in my head and I realize it would be too messy for the people who would have to clean it up.

For reference the poem is:  Razors pain you.  Rivers are damp.
                                           Acids stain you.  Drugs cause cramp.
                                            Guns aren't lawful.  Nooses give.
                                           Gas smells awful  Might as well live.

Here are the thoughts that put me in a low place.  "I am a burden.  I am worthless.  No one would miss me.  I am lazy and sort of dim..."  You get the picture.  The other thought that makes me feel like a big steamy dog turd is "If you were a stronger person, you could follow a diet/exercise plan, and you would have more energy, walk better, be less fatigued etc...

These last few thoughts are particularly harmful and soul sucking.   These thought are called "victim blaming" or even "victim shaming."

Here's the deal. I have and am taking supplements including iron, vitamins D and B.  I go to yoga, physical therapy, and weight training.  I do as much aerobics as I can.  My diet could be better because, even though I have not eaten red meat since I was 25, I still like the occasional chocolate bar or a Culver's concrete mixer  (in lieu of Ted Drew's or , better yet, a Junior delight from Central Dairy in Jefferson City).  Despite my best efforts, I am still a good 30 lbs. over weight, and, oh yeah I still have MS and it is slowly progressing the way MS does.

Every time someone tells me that I should try the Wahl's protocol or go gluten free, or eat Paleo, I am being told that MS is my fault.  I know it is well meaning, 100% of the time.  But, I have heard of these diets.  I have seen Terry Wahl's TED talk touting her miracle diet for curing MS and pretty much everything else that ails you.

What I have not seen, however, is empirical evidence validating that these diets will have a similar effect on everyone who tries them.  The only research I've seen regarding the Wahl's protocol is that, in a very small clinical trial, there was on overall improvement in the subjects subjective sense of fatigue.  This is a giant leap away from being a cure.

Now, I am not saying that diet does not play a huge   our health, but it is one piece in a ginormous puzzle that creates wellness.

And sometimes a disease happens because you got dealt a shitty hand.

Be aware that if I knew for sure that some particular diet would "cure" me, I would be all over it like a cheap suit, but until I hear the news from a well developed clinical trial, I am not willing to make my life more difficult and less enjoyable for the off chance hat I may experience some minor alleviation in one area.  Until, then, I will do the best I can with what I have, from where I'm at, and I will call out myself and others when they unwittingly blame me for not being cured with diet.
                                         

This is a rant

I am taking time away from my life stories because I am sorely in need of some rant time.  I have talked before about what a lovely place denial can be.  For many year's I could almost pretend that MS had a very limited role in my life.  Occasional exacerbation and some mild hearing loss were just small bumps Annoying, yes, but severely problematic? Not so much.  Then problems began to be more of an actual issue a little at a time.  MS is a progressive disease, and it certainly has progressed.

 My handwriting, never really all that legible, became undecipherable, even to myself.  (Why are ipps on my grocery list?  Oh.  Eggs...)  I used to like to go on long walks around the neighborhood.  When Eli was an infant, I must have pushed him hundreds of miles in his stroller.  Then, one day, I walked several blocks by myself, and realized that I couldn't continue without resting.  Even after a ten minute break, I was limping and unable to stand upright by the time I got home.  I still didn't need a cane, but any walking I did was significantly curtailed.

I also remember the time I tried to run.  My sister was in town, and we were playing outside with our sons.  I tried to run to catch up with them, and realized that my legs were totally unable to respond to my request to move faster.  I think I may have even fallen.  I was laughing at how funny I must have looked, but it was an unnerving moment of realization that there was another thing I would never do again,  I was about 38 years old.

So my abilities have become fewer and fewer over the course of the past 20 years.  I continue to find denial a lovely place, but I have moved into the fourth level- I know I have MS. I know I am always going to have MS.  It has a significant impact on my life, but  I don't have any feelings about it.  I pop out of denial when I am tired or frustrated or angry and do the emotional work that is part of grief.  I grieve anew every time another ability to lost or another dream dies.

I think people dealing with MS or any chronic disease has enough crap to deal with every day.  I struggle to get in and out of the car.  I struggle to type this. I watched West Side Story on tv and wept.    I remember being able to sing those songs and hit those high notes.  Age is a culprit in taking my range, but MS took the muscles of my vocal cords.  I miss being able to sing.  And, my least favorite struggle, it trying to get to the bathroom on time.

I realize the incontinence is not uncommon in MS and is or even uncommon in the general population.  I have come to terms with finding the right incontinence pads and the neurologist has prescribed medication,to curtail the worst of it.  However, I still find myself with mortifying spots and having to change clothes in order to keep away offensive smells.

So now comes the real rant.  I am taking 20 mg of something called Oxybutinin.  I am supposed to take one in the morning and one in the evening.  I have discovered that, if I take them both in the morning, I can keep leakage to a minimum and am able to be more successful in getting to the bathroom before I have a problem. However, this means that I don't have one for the night and I have to get up more frequently,which disrupts my sleep even more than it is normally disrupted.  So I asked my very competent and well educated neurologist if I could increase my dose to 30 mg.  He listened to my concern and said, that it is okay to increase that articular med by that amount,  Cool!

 I want to the drugstore to pick up the med, but it wasn't in yet. I'll have to chew out the neurologist for taking so long!  Then I got a call from his office. Unfortunately, the insurance won't pay for the higher dose.  Someone, somewhere who is NOT a doctor has decided that I don't actually need this medication at that dose.  So something so incredibly humiliating that can be held off a tiny bit with a simple mediation increase, that my DOCTOR said is okay, that would help me feel a wee bit of dignity when so much has been taken by this dumb illness, is being denied to me because the for-profit health care system doesn't want to hurt it's bottom line.   There is something truly reprehensible about that.  So I am going to box up the content of my adult diaper pail, and mail it to my insurance company.  I may keep doing that every month until someone understands that , yes, IT IS medically necessary.

Thanks for letting me get that off my chest