Sunday, April 30, 2017

Grumpy and despairing...

Yesterday, I went to Walmart to fetch the groceries I forgot when I went on Saturday.  Much to my frustration, I completely forgot butter, even though it was on my list both times.  I am completely out of butter.  Well, that's a lie.  I am completely out of regular butter.  I still have some European butter for special occasions.  Actually, had a I brain in my head, when I made the rosemary butter, I would have used that instead of my regular butter.  But, as plenty of evidence exists, I am greatly lacking in the brains department.  SIGH.

On the way home, I decided to try this tiny Dominican restaurant I had spotted.  I did so because I have been in much greater pain of late and I wanted some food that I didn't have to prepare and thought that would be a judicious use of some of my grocery money.  The chicken empanada on that plate changed my life.

The plate was so generous that I was able to put away two more servings.  These are the takeout containers from my beloved Lebanese restaurant back in Alexandria.  I've kept them all this time because, back when I could afford to eat out regularly, I always had leftovers.  I absolutely adore leftovers.

There were no leftover empanadas.
I ate Sunday's on Saturday.
And wanted more.

I actually bought three chicken dishes: the plate, the empanadas, and a roasted chicken.  Oh, my!  I thought it was a fair price:  $6.75.

When picked, I came up with three cups of white meat and two of dark.  I admit that I felt the need to taste several parts of the chicken to make sure it was okay.

Protein is really important in my diet, especially when the gastroparesis is flaring its ugly head.  And when my blood sugar is low.  And when I am not up for eating much because of the violent waves of nausea.  And, basically, I practically cluck.  One cannot have enough chicken!

I am already salivating over the next time I might fetch me some chicken empanadas.  Mmmmm!!

Friday, I cut Amos' nails.  Saturday, I plucked the curls from inside his ears.  [Both of us like to pretend this doesn't happen.]  Today, the plan was to cut the curls from his body.  Tomorrow, is his bath.  You see, on Tuesday, Amos has his six-year-old check-up.  I like him to be especially presentable.  Mostly ... probably ... it is because I worry I might be judged as a bad puppy momma if he's not all sweet-smelling and presentable when being poked and prodded by professionals.

But cutting his hair today was especially difficult for me.

It wasn't just that he has become worse than a baby on a changing table when it comes to the application of scissors.  It was/is because of the pain.  Oh, my!  Has the neuropathy been terrible!! Cattle prod pokes in my arms and legs and pelvis.  The electrical pulses of pain are so very difficult to endure.

This whole week, I've also had a lot of visceral pain, which had been better for a while.  That is difficult to swallow because when the neuropathy is in your abdomen, you start to become convinced that something dire is wrong.  Like with the chest pains you have with NCS (dysautonomia).  It is so easy to become convinced that you are having a heart attack or some other coronary event.  On the Dysautonomia forums I've visited, so many talk about having chest pains, going to the ER, and being sent home.  They are angry that nothing was done (other than a cardiac work-up), but there is little to be done with nerve pain like this.

So much of dealing with pain is having a good self-talk protocol.  Words that you can speak to remind yourself what is true when your body is screaming its insensibility.

We've had tumultuous weather of late, and I suspect some of the pain is the fronts that have been passing through.  Cool.  Sweltering.  Cold.  Steamy.  And lots and lots and lots of rain.  It is good that I do not have to go out until Tuesday late afternoon.  I have more time to swallow the pain.

Wednesday and Friday are doctor appointments for me.  If the part is in, I am hoping Thursday will be a second visit by the refrigerator warranty repair person.  He believes the terrible grinding noise I am hearing is the damper motor, which is also why he believes the refrigerator is so cold.  Apparently, the damper controls the cold air from the freezer.  I already knew that the only cooling in a refrigerator that happens actually happens in the freezer.  So, his explanation seems plausible.  In any case, it does worry me that something so vital has broken on my practically brand new refrigerator.  And I would like it repaired as soon as possible ... definitely before I end up with more frozen food in my refrigerator.

I sure do hope that this coming week is easier physically than this past one.  I admit that I am not all that amiable to be around when I am hurting.  I can manage a fairly high level of pain, but when I get to that tipping point, I become rather grumpy and a tad despairing.  I very much dislike myself at those times.  Since I have several appointments this week, I'd like not to be grumpy and despairing during them.

Lord willing...

Friday, April 28, 2017

Showering myself...

When I was out today, I spotted this very old couple walking into Lowe's.  They were holding hands. It was this really strange moment for me.  Normally, seeing loving couples hurts in a way that emphasizes that I have lived my life alone, that no one has ever loved me.  And, these days, I think about how, in all likelihood, I will die having never known the loved that I am seeing.  But, today, what I saw was so ... pure.  I know absolutely nothing about that couple and yet I know that they were  gentle and kind to each other.

I watched them for a while.  They dropped hands so that the husband could push the cart, but whenever he stopped, they clasped hands once more.  When the wife bent to look at flowers, the husband put one hand on the small of her back and one on her upper arm, supporting her as she bent over.  It wasn't that she seemed to need support, but more than he wanted to be close with her.  As they browsed, I think they inhabited their own little world.  I saw him, looking at her, whist she was admiring a blossom, touching it with her fingers.  I swear, I could hear him thinking, "I can't believe she's mine."

It was a weird and sweet and oddly calming to watch them.  I think, too, it was a bit hopeful.  But hope of what??

I was at Lowe's because I finally found large pipe wind chimes that I could have for my haven.  Alas, after hanging them, I realized they are too large large pipe wind chimes.  So, the hunt remains.

My other trip out was to Walmart to get four things:  kitchen towels, heavy duty foil, chicken, and fabric.

Since I have never, as an adult, had a grand birthday party (or much of one at all), I decided—as I've practically shouted to the world—to celebrate my 50th myself.  For me, that includes getting the presents I've never really gotten.  I admit, I was greatly disappointed when I got my Ph.D. and I was the only one to celebrate the accomplishment.  I bought a bed (I'd only ever had a twin at that point), an antique book by Gene Stratton Porter, and a puppy dog.  This celebration, I have been thinking of things that will either make my life easier or things I struggle to believe I've earned or deserve.

Retroactively, I'm calling the handles on my garage and recycling bins a birthday present.  After all, if I am doing the celebrating, then I can make such declarations, eh?  I bought a new cover for my laptop, to replace the broken one.  [I often drop my laptop and the covers blunt the impact.]  This time, instead of getting one that was as cheap as possible, I got one that I have been hankering for:  Vincent Van Gogh's Starry Night.  This is a reminder of my second most favorite television episode: Doctor Who's "Vincent and The Doctor."

It is such an exquisite exploration of mental illness buried in the sci-fi-ness of it all and it has my most favorite quote:

The way I see it, every life is a pile of good things and bad things. Good things don't always soften the bad things, but vice versa, the bad things don't necessarily spoil the good things or make them unimportant.   ~The Doctor

The fabric is for a larger weighted blanket in my bed.  I like the small one I use, but sometimes I want my torso and my shoulders covered.  I've had enough of the weighted pellets (I think) for a while now, but I have been waiting to 1) find the right design on the Waverly fabrics I've been using and 2) have the money for a larger fabric purchase.

I bought blue and kaki denim flowy skirts, because I want to wear less men's lounge pants and the peasant skirts I bought several years ago have fallen apart.

I bought a new band for my medical alert bracelet because the current one keeps slipping off since one of the clasps is loose.  However, I bought a pretty one this time, instead of the cheapest, most practical stainless steel link chain I could find.

I bought a plastic wrap dispenser because I am absolutely tired of fighting to tear off pieces of plastic wrap.  And, since I cook most of my food now, I am using more plastic wrap than I ever have before.  No matter what brand I try, I have the hardest time tearing one off.  The dispenser has this slide zipper that makes cutting plastic wrap a breeze.  I chose one that was sunflowers because of that same Doctor Who episode, remaining me of Van Gogh's sunflower paintings.

The biggest thing that I have bought, thus far, is a Roku.  Selling my Roku and keeping the free Fire TV stick was a HUGE mistake.  I HATE the Firestick.  So much of it is not as intuitive as the Roku, but it also kicks me off Netflix all the time.  I think it is cursed.

The other big present was "Fringe."  Frankly, I shouldn't have to explain why I wanted that show.  It's just so stinking awesome!!  Plus, when Becky is here for my extended birthday celebration, we plan to binge watch the last two seasons because it left Netflix before she could watch it.

And, well, I guess you can say that finishing off my haven are many other presents.  I mean, I have the tulip stained glass window (which hopefully will be framed by my actual birthday), the table set, the table settings, the fire pit, and the makings of the fountain.  And the wind chimes if I ever find what I need.  I did save for four years for my haven.  I just didn't save enough.  So, I raided my retirement savings to finish it.  It has exceeded my expectations as far as providing a sense of privacy and safety.  It really has made my life more bearable.

Of course, I did not plan to have to replace the darned printer and the darned ceiling fan and the darned sleep mate (and the darned refrigerator last December).  But, right now, I am just not looking at my budget.  I have a plan ... a hugely austere plan for the rest of 2017.  Of course, if either or both the repeat thyroid scan and the repeat kidney function blood work are not ... good ... medical expenses might blow my plan.  And I have been looking for more things to sell on Craigslist.  For example, I did not have the electrician install the remote device on the fan.  He said they sell for $32 as an add-on, so I am hoping I could sell it.  I doubt they will sell, but I re-used my shades from the original fan and so I have a set from the new fan.  Little things.  And maybe that darned Fire TV stick.

My aunt sent me Spring treat money, so I immediately changed that into early birthday money and bought the pump for the fountain.

And ... let's be honest.  I usually get two checks for my birthday.  I know you are not supposed to count your chickens before they hatch, but I figure that I shall pay myself back just a bit.

Oh, yes, I also opened a new credit card, one with slightly better rewards and a $100 bonus in the first three months.  I count that bonus as birthday money!!  I currently earn 1.25 miles for every dollar spent.  This one is 1.5% cash back.  Since all I do is get account credits, switching to a cash back card is just fine.  And I'm sticking with the same bank.  I charge as much as possible and pay it off every month just to earn rewards.  It may not seem like much, but I think that .25 bump will help.

I have a few more presents on my list, the chief being a glass straw with a frog on it.  Maybe.  Something practical and fun.  But I might be at the end of my buying list.  After all, I have definitely treated myself in a way that I never have.

Plus, I've been trying to figure out about the cardiologist's suggestion that I upgrade my Fitbit to a heart rate monitor one so that I can more easily know what my heart rate is.  If I am more aware when it is low, I might move more at those times to lower the amount of time I am being paced.  I think that is a sound plan.  And if I do qualify for the Restasis and the Dulera manufacturer medication assistance programs, then I should be able to swing a new one through my medical budget funds.  The birthday part would be two-fold:  1) I decided on the Alta HR, but I think I would like the special order one black gun metal, which is $30 more, and 2) I would like to have a different band (I found a brown leather one for $12.98).

Oh, yes, and I want a cake.  I want a real cake, a wonderful cake ... not a Walmart bakery cake.

So much treating and wanting for someone who's been struggling to learn to live on a low income with deep medical bills, eh?

My original idea for a birthday celebration was the old-fashioned weekend party.  I wanted my three close friends to come.  I wanted them to come and celebrate with me because I've never had a party as an adult.  Frankly, I never thought folk would come if I had a party.  I've never had a party of any kind.  And since I have had no wedding to attend or baby shower or the like, I wanted my 50th to be that grand reason for a visit.

Becky is coming, making the trip for my greedy, greedy self, from Thursday to Tuesday (an extended, extended weekend).  Celia is coming, but only for one day.  She just couldn't arrange more.  Mary cannot be here.  I can barely think about that, about how disappointed I am that my one chance to have my three friends together fell through.  I think having them all come was really too much to hope for ... I thought for sure that Becky would, because her mother is so very kind about helping with the children so that she can travel and her beloved has been so very gracious over the course of their entire marriage to make sure he did what he could so that Becky and I could visit ... but not all three.  Sure enough, my weekend birthday party dream isn't going to happen.  I sort of moved on to showering myself with presents.  SIGH.

I think the real gift has been—at least thus far—is that my showering has been without guilt.  I made the choice.  I think I can recover from the showering.  I have enjoyed my gifts thus far.  And I have not felt undeserving of the things I have chosen.

I do wonder if anyone else would understand or if I would just be considered reckless.

Tuesday, April 25, 2017


A small house ... a darker interior, with paneled walls maybe ... a record collection ... being punished because I was a bad little girl ... hiding in the back yard waiting to go home.

I started to tell my sister about this last ever visit to a relative's house.  Flashes, really.  She asked me why I was being punished and I couldn't answer.  She asked me how I was being punished and I started shaking uncontrollably.  I still couldn't answer.  I just know those few things I told her.

I wish I could remember the vast swaths of my childhood that are blank to me ... the vast swaths of my adulthood that are blank to me ... but I am not focused so much on remembering as I am learning to handle emotions after disassociating so much.

I also wish I didn't believe that I must have been such a very bad little girl.

Monday, April 24, 2017

Gardening and fountaining...

Gosh, what happened to Saturday and Sunday?  I cannot even say.  I mean, I can post what I had to eat for one meal each day, because I have been spending time out in my haven.  However, aside from those photos, I am not sure how the days passed.

I did, a few days ago, successfully replace the burnt out bulb beneath my microwave.  I am surprised by just how much brighter the stove top is now.  It makes me think that the bulb has been out the entire time I have owned the microwave.  I was proud of myself.  Perhaps a tad bit too proud.

What happens at such times?

The light inside my microwave went out!  I am working up to Googling how you go about replacing one of those.  Already, I am wondering how you get a screwdriver inside a microwave.  I really do not want to pay an electrician to replace the light.

Man!  I've had so much break lately.  Well, if you go back to the practically new refrigerator (which needs a warranty service call because it is making terrible noises when the water is moving around inside), I've had the refrigerator, the stove light, the sleep mate, the bedroom ceiling fan, and printer, and now the interior light on the microwave.  I'm not counting the light beneath the microwave, because I really do think it never worked.

I'm ready for a break in the cost of home ownership.

Meanwhile, about those meals...

Today, I had another melt.  I've been working on perfecting my melt making skills.  This one was a Southwest Chipotle Chicken Bacon melt.  It didn't last long.  In case you were wondering, the best melting cheese to use on a melt (that I have tried thus far) has been gruyere.  I prefer using a combination of two cheeses in all my melts.  White cheddar cheese pairs well with gruyere.

Somehow, I had forgotten how to make chicken enchiladas!   What a thing to forget!!  I finally tracked down the ratio of enchilada sauce and evaporated milk.  I told myself I was going to wait until the 27th to get the ingredients, but with all the "breakage" spending that I have been doing, I gave up on budgeting and went grocery shopping.  Of course, I forgot about half the stuff I've been waiting to buy, but I did get what I needed.  Mmmm!

I did remember something I did this weekend, just looking at this!!  I planted my raised bed goodies:  thyme, cucumber, lettuce, and carrots.  I haven't been able to track down sage.  With more gardening space, I chose tomatoes and broccoli as what I plan to branch out in my growing endeavors.  I loathe tomatoes, but I would like to learn to make sauce from scratch.  My dear friend Becky advised for me to plant roma tomatoes.

Anyway, last summer, with my bountiful crop of cucumbers, I started making lettuce-less salads.  This is my new favorite:  pulled poached chicken, cucumber, goat milk cheese, dried cranberries, and maple chili sunflower seeds, with Briana's Blush Wine Vinaigrette.  I've had this salad a bite frequently of late.

This was chicken in Thai honey peanut sauce over Basmati rice.  Mmmmm!

Anyway, not to bore you with a million and one meal photos, but I have enjoyed eating out in my haven immensely.  In a way, I have tried to think of it as my own little café.  By taking time to have a bit of presentation to my meals, I have been cheered ... thinking less about being ill.  At least whilst I am out there.

Truly, my hopes for the haven have been exceeded beyond my wildest dreams.  It is far prettier than I thought (the panels) and the tumbled stone pavers.  It is even more private than I hoped it would be.  And it is already cooler than I imagined.  By that I mean that I was outside whilst it was 74 degrees and yet I was comfortable eating in the shade.

I hadn't thought about a future haven when I moved my beleaguered variegated maple tree other than to make sure it wouldn't be in the way of any future fencing.  It turns out that the tree anchors the space beautifully.  I need to take a better photo, one further back, to emphasize its perfection.  You can see, though, that it is leafing out.  My fingers are crossed for that poor tree.

You can also see that I opted for a stacked pot fountain.  Firewood Man said it would be mid May before he can finishing the wiring.  It's driving me nuts, but I am trying to be patient.  I thought I got all that I needed, but I realized that I need to get a different plug cover, some river rock for the top, and more tubing to run from the pump that will be at the bottom of the fountain and the top.  I thought I had enough from eons ago when I got my first fountain, but I don't.  Oh, how I cannot wait to get the water running!

It is my hope that the frame for the tulip window might be done soon.  I'm trying to find that perfect balance between reminding Tim and not annoying him.  He does tend to forget things.  He is, however, crazy busy right now.

Oh, yeah, look carefully beneath a chair and you can see that I finished my footrest!  It sure makes it easier on me when Amos hops up in my lap when I am streaming out there.  He's partial to cheesy sci-fi, too!

There, I did remember via the photos.  I gardened and fountained since last Friday.  And ate tasty food....

Friday, April 21, 2017

Back to back...

Thursday was my next appointment with the rheumatologist.  Even though I know better, I went over my blood work and noted two things of interest:  results showing kidney damage and muscle damage.    I want my blood test results to be normal.  SIGH.

To be honest, I have avoided learning much about Sjogren's Syndrome.  This whole new turn in my medical journey has not been one that I have handled with any amount of grace.  I have, however, not actually, technically had a hissy fit over it.  I've been to busy trying to deal with living with Sjogren's whilst being overwhelmed.

Seeing the blood work, though, made me realize it was past time that I start reading.  But I wanted a gentle start.  I went looking on Facebook for a support group and found many strident ones that sounded a lot like that first dysautonomia one.  Then I stumbled across this Sjogren's "sisters" group and I got my "gentle" introduction.

I will say that the one truly disturbing discovery was how many of them had dentures!  The little I read about how a dry mouth can cause tooth decay came crashing home.  The rheumatologist had told me, on my first visit, that I needed to switch to a baking soda toothpaste.  No problem! I thought.  I've  been using Arm & Hammer baking soda and peroxide toothpaste for years and years.  My family (and other visitors) have complained when asking to borrow my toothpaste because it tastes rather terrible.  Hah!  "Terrible" has at least kept my teeth safe thus far.  However, I learned I also should be seeing a dentist once a quarter.  I haven't gone since I moved here.  I am not sure how to swing that change.

I read several posts on how Sjogren's affects the kidneys by folk who were experiencing that, so I learned a few questions I should be asking.

When I saw the blood work, I immediately thought of the Celebrex.  I remain worried that I will be taken off the only pain medication that has ever helped my arthritis.  And I was rightly so because my doctor brought that up.  But she ultimately said that discussion would lie with a specialist if warranted.  She wants to repeat the blood work on my kidneys in six weeks to make sure this was not a blip.  If it remains poor, then she would like my GP to follow up and manage that problem, coordinating with a specialist.  That sounded reasonable and fair.

We talked about my eyes quite a bit and she walked me through two successive next steps if the Restasis does not start working.  I liked knowing what could be coming.  She was adamant, though, in her admonishment that I not miss the scheduled drops that I am on now ... both the Restasis and the three other drops.  She said not to let two hours slide into three.  Be vigilant!  SIGH.

We talked about the Reynaud's in my hands and feet, with my expressing my frustration with how hard it is to keep the latter warm.  She suggested I consider hunting gear for my feet and hands as that might provide a better opportunity for success.  I, uhm, don't know any hunting stores!

I did the best I ever have with the physical exam, and I've only met her twice.  So, I am deeply thankful for that.  She also was rather encouraging to me because she observed that it must be hard handling my illnesses and a pacemaker!  She's the first doctor who showed an understanding that having a pacemaker might be a difficult adjustment ... one that might be long in coming.

It was a good visit.

Today, I had my pacemaker check appointment.  I think the best way to explain how that went was to say that the tech wore GREEN just for me!  A really good moment came when, after explaining that Georgie was just not helping me whilst walking, riding the recumbent bike, or standing whilst cooking, the movement sensor screen that she checked showed that the highest the sensor had raised my heart was 60 beats per minutes (BPM).  HAH!  Data backed me up!!  Good times, man!

I do not do well when I have to have leads attached to me (being exposed), and I most decidedly do not do well with the pacemaker check tests.  I start to panic when my heart is forced to beat faster and really lose it when the ventricular chambers are tested.  The tech, knowing this, very deliberately asked me thinking sort of questions just as I started to feel the testing.  The distraction made this testing session go better than any of the others.

The CLS setting is based on my own heart, because it involves learning algorithms for all the settings based on how my heart responds thereafter.  So, the changes we made will take a while to evidence whether or not they are of benefit to me.  I see the cardiologist in six weeks and he can make tweaks or I can go back into the pacemaker clinic.  This main setting is best for folk who faint.  However, it makes adjusting the settings for movement difficult.  I need to be patient.

Beforehand, I asked for prayer on Facebook, because today marks 44 days without a meltdown and, because of the magnitude of my last meltdown, 44 days since I cut.  I was so fearful of how I would respond to the shame I feel when being hooked up with the cardiac monitoring leads that I vomited as I was getting ready.

As a reminder, the ophthalmologist, upon seeing me so agitated, suggested that I bring headphones and listen to music during my medical appointments.  I took her advice and added music to my arsenal that now includes a weighted blanket, a diffuser necklace pendent, a squishy ball, a frog ring, a photo of Amos, and music.  She suggested Bach, which was the same suggestion for trying to use music in pain management.  I do not yet have any Bach, but I brought the soundtrack to my beloved movie "The Martian," a gift from my dear friend Mary.  So, I had a great orchestral score and a reminder of her love and affection.  I kept one earbud in during the entire appointment so that I could hear the music as I struggled to get through the difficult moments.

Gosh, there goes Georgie!
Should I mention how often she goes off whilst I blog??

Back-to-back medical appointments are very difficult for me, draining both physically and mentally.  This is especially so whilst I am so very overwhelmed with all that has changed in my life since last fall.  However, I really could not asked for better appointments.  I mean, they could have been even better, but they were most definitely better than I could ever have imagined at this point.

Two days. Two appointments.
Doctors who listened and who showed compassion.
Fairly good communicating on my part.  Great communicating on their part..
Plans for next steps to help assuage my angst.
No meltdowns.

My next appointment is on the 3rd, though Amos has his on the 2nd.  Tuesday, the 25th, I am getting up early to ferry my realtor to her very first colonoscopy.  I hope to be able to sleep in my car whilst she is being tortured, but I might have to stay awake inside because the clinic where she's going is pretty adamant (thus far) about a patient's ride being on hand at all times.  The 26th Electrician Man is coming to service my HVAC system and hang the replacement fan for my bedroom.  And, soon, I'll be calling Whirlpool because my new refrigerator is making funny noise.  SIGH.

All I want to do is rest after yesterday and today, but I have several things on tap in the coming weeks.

Lord, have mercy.
Christ, have mercy.
Lord, have mercy.

Tuesday, April 18, 2017

Another broken thing...

This morning, I wanted to claw my eyes out of my head, the pain was so terrible.  I keep thinking, "How did I get here so quickly?"  SIGH.

There are so very many obstacles to sleep and it just stinks to have yet another one.  No matter how hard I try, at times, the burning, stinging, scratchy orbs of mine cannot be ignored.  This morning, I actually screamed:  "I JUST WANT TO SLEEP!"  Poor Amos when flying off the bed.  At least my Fluffernutter is forgiving.

As I have said, this new battle with my eyes makes me feel inordinately lonely.

I didn't fall asleep until around noon, which meant I have had very little sleep.  For someone who already battles exhaustion, this problem has been especially draining.  I sort of ambled my way through the late afternoon like a zombie, but I did eat out in my haven.  I had heated up my 15-bean soup and a sweet cornbread muffin, but the soup was still cold.  I was too tired to walk back to house to warm it again, so I made do.

Whilst sitting out there, I checked the most awesome weather app that Firewood Man introduced me to a few weeks ago.  It was 74 degrees outside.  My theory was correct ... at least for today.  Out in my haven, I was in the shade, so the heat was not bothering me.  I found that rather hopeful for my continued use of my haven as the weather warms.  You see, I've been sitting out there as much as possible because I worry that I will have to wait until the fall to enjoy it again.

Once the sun drops low enough, the weather begins to cool significantly. All winter I have noticed this in a way I never have before.  It is as if that giant orb in the sky is directly heating the air around me and the lack of its presence is keenly felt.

I watched "The Voice" whilst waiting on that sun to drop.  My wi-fi signal is not all that strong outside. I do find it interesting that it is easier to stream Netflix than it is Hulu.  I suppose I should have chosen a show or a movie, but I wanted music.

Tonight, cooling off was especially helpful for me.  You see, I had some more gardening to do.  I hooked up the back yard hose (a job which I fervently wish someone else would do) and pulled it out so that I could water the raised bed.  I had some concerns that the hose wouldn't reach to my new bed, but it did, rather easily I will add.  I watered that soil mix and stirred it up a bit before smoothing things out.  Then I planted lettuce and carrots.  Last year, I stunk at growing carrots, but I thought I would try again.  In that smaller bed, I plan to grow lettuce and carrots until the lettuce turns bitter and my herbs all summer long.  Once the lettuce is bad, I thought I might try eggplant.  You know, just to see.  It could have most of the bed because I plan to grow rosemary in a pot (crossing my fingers on that one) and the sage and thyme in the bed.  Those herbs would only need about 1/3 of the bed.  The rest could go toward a new vegetable experiment.

In my original long bed, I planted cucumbers on both ends and in the middle.  The idea is to use the chain link fence like I did last year when the cucumbers were growing in the pot.  Only the pot had to be watered several times a day. I am hoping the raised bed will mean the cucumbers need less water ... or the bed will hold more water than the pot.

So, what to do with the rest of it if my herbs are elsewhere?  Well, I bought tomato plants and broccoli.  I adore roasted broccoli, so I thought that would be an interested challenge, even though I heard growing broccoli can be a hard row to hoe.  I DETEST tomatoes, but I do use tomato sauce and would like to make my own.  My dear friend Becky suggested I plant roma tomatoes, so I got a six pack of those plants.

It is early to plant plants here, but we've had unseasonably warm weather since February.  And, at Menard's, there were very few growing plants left ... absolutely no rosemary, thyme, sage, or cucumbers.  I am hoping to get cucumber plants, but I thought I would try the seeds since no plants were available.  The gardening staff at Menard's said that the cucumber plants sold out in two days. After enjoying those tasty treats last summer, I certainly understand the greedy response to a load of cucumber plants.

Since I had bought the tomato and broccoli plants, I wanted to get them into the raised bed.  I wasn't feeling pressed on the seeds, but I went ahead and took care of them, too.  Now, though, I think I should change how the carrots are sowed.  ["Sowed" or "sown"?  I just got myself into a cognitive pickle trying to figure out the proper conjugation for that sentence.]  I am not sure that is possible.  I'm crossing my fingers that some of my friend's dill comes up again this year.  Last year, I harvested all re-seeded dill.  I am not sure I will get that again this year.

I watered everything in and rolled up the hose.  Then I went and laid in the grass in front of my haven to try and recover.  Amos took his perch up on the stone bench and kept watch over me.  In return, as thanks for his good care, I dragged myself on a walk with him.  Then I spent the rest of the evening trying to work up to take a shower.  I am not sure I am going to get there, but I will at least clean myself up with wet washcloths.

Tomorrow is the third A&E appointment, as warranty service for GE.  This will be the SIXTH appointment I have actually had, the first three being three other companies who never showed up.  I asked, last Friday, when I was stood up a second time by the same employee of A&E, for a new technician, a senior technician.  I will not be holding my breath over this.

The really bummer part of my day is that my printer died.  Yesterday, my bedroom ceiling fan died.  That was 19 years old and I shouldn't be grousing over it, but now is not the time to have unexpected expenses.  Only, well, should I have expected it??  My printer, an HP laser printer, is 12 years old.  Should I have expected that demise, too?  I REALLY need to print some test results for a doctor appointment on Thursday, but there is nothing I can do about that.

I've wanted a new printer for two years, so I have two options in my Amazon cart, because I have wanted color to help organize my life more and to make homemade cards (since I am not a crafty sort of person).  I am still, when faced with the actual need for a printer, not sure which one I want.  One is a printer and one is a printer with a scanner and copier.  I very much dislike having to go over to Staples for copies, so I'm leaning toward the all-in-one.  However, I have only ever owned and used plain printers.  I guess I am nervous about it.  It is an HP though.  I've only ever owned HPs.  Just like I've only ever owned Toyotas.

You know, my first car lasted 10 years, my next lasted 11, and my current vehicle is 13 years old.  My first printer lasted 10 years and my second lasted 12 years.  That's not necessarily a bad track record, eh?  But being a good shopper and a good keeper of my goods doesn't ease the burden of having these replacements crowd upon me.

I mean, I am still paying for the mattress and I am paying for the stove (since selling mine let me buy my eye glasses and upgrade to gas).  I can manage those things.  But I am still reeling from having to replace my 5-year-old refrigerator last November.  And, as I have said, I have beggared myself through 2018 for my haven (since my four years of saving fell woefully short) and for my 50th birthday celebrating that I am currently doing.  So, the fan was a punch to the financial stomach.  The printer?  I think that might be a knock-out blow.

Should I mentioned my new refrigerator is making a rattling noise?
I'm not calling Whirlpool until I get GE to take care of my new stove.

Monday, April 17, 2017

Sticks and stones...

Today was a tad rough on me.  For one, I was felled by dizziness whilst the maids my mother sends each month were here.  I ended up sleeping on one of the sofas almost the whole time they were here.  It is the first time I gave into feeling poorly during one of their visits, the first time I didn't try to pretend to be better than I was.

As it was, I was exhausted when they arrived, for the day's bout of nausea was extensive and I had little sleep before they arrived just before 1:00 in the afternoon.  And, really, I was exhausted from all my DO SOMETHING coping that I did yesterday.

But, in truth, I have been hurt and upset from an exchange that happened yesterday.  I was out in my haven, helping my neighbor, when Firewood Man and his helper came to put in the raised bed.  The conversation turned to my haven and I mentioned my latest idea for it:  a small metal trashcan with a lid.

A while ago, one of my other ideas was to put handles on my trash and recycling bins.

I looked for handles and finally decided on cheap and unattractive over everything else that caught my eye.

Since the handles were for drawers (I couldn't find any that had screws than went back into the handle that were not for drawers), I had to make up for the thickness a drawer would have that the plastic lids did not.  My solution:  the handy dandy nifty wifty cheap washer.

I wanted the handles because, with the bins in their new location due to the privacy panels Firewood Man put up for me, I had to put them in front toward the fence so that it would be easier for me to pull them out for the trash and recycling collectors.  Where the bins were previously, with the odd angle of the fence line, I could just leave them in place since they were within the prerequisite distance to the alley.  And I had them hinge to hinge so I could more easily open them whilst leaning over the fence.

When we straightened the angle of the corner of the fence line back to a right angle,  the bins would only fit along the fence side-by-side.  To put them with the lids outward instead of the hinges made pulling them out for pick-up too difficult, as I stated.  But it also made them really, really difficult for me to open.  Hence, my handle idea.

For the record, I'm not the only person who's commented enthusiastically over how easy it is to open the bins now that they have the handles.   But all I care about, really, is my response.  The handles worked even better than I envisioned.  So, I am pleased.

Back to the trash can.

Because the birdies like my haven as much as I, generally I have to clean off the table (sooooooo glad I bought a glass top right away) every time I go out there.  The first few times I carried a bottle Windex and a roll of paper towels, but now I bring three cleaner soaked pieces of paper towels.  I really don't like having dirty paper towels on the table whilst I am eating.  But if I put them on the ground, Amos will mess with them.  So, I've been making a trip back to the house before sitting down to enjoy my meal.  More steps for me.

I also have this new condition that I really don't like to talk about: gustatory rhinitis.  My nose has become a sieve when I eat.  So, I need to have Kleenex near by.  After I finish eating and am savoring time in my haven, I really dislike having to hang onto my dirty tissues to keep them from blowing away.  For the same reason as the paper towels, I cannot drop them on the ground.

Hence, my main two reasons for desiring a trash can in my haven.

I have thought about this quite a bit.  I figure a metal one with a lid will mean that I can leave a bag inside and then just empty it when it is full.  No more extra trips to the house (or to the trash bin which is more steps than to the house).  Of course, typing this, I realize I could put some sort of trash bag in the garage and deal with my trash there, but that is still more steps.  I want less steps.  I want things in my life that make my life easier rather than more difficult.  It is plenty difficult enough for me.  Anything that makes what I do easier is precious to me.

Tonight, after I finally finished languishing on the sofas, I went outside with Amos so he could tend to his business.  It was so lovely that I spent quite a while out there just savoring the evening.  What I love about my haven is that I feel safe out there.  I cannot really explain why, but I do not feel safe when I am outside, even in my back yard.  I have to battle abject fear every time I take Amos for his walk (which is why I love it when Becky talks on the phone with me whilst I am doing so).  I am okay up on the airing porch, but when we spend hours up there, Amos had needs.  We tromp downstairs and then back upstairs and I get exhausted.  Out in my haven, it is private and I feel safe and Amos can tend to his needs as much as he wants.

Since Firewood Man finished the pavers out there, I have been outside more than I have since the pit bull attack.  And I have felt safe outside more than I have since the pit bull attack.  I have a place of peace and rest and I actually have high hopes that the shade will let me be out there during the summer (at least during the shady times).   Amos enjoys it.  I enjoy it.  Dare I say, I have been happy out there.

Having that space does make dealing with the misery of my body easier.  Okay, maybe not easier, but I have something to look forward to that is outside of this house.  Maybe I just don't have the words for it, but this has been the best thing I have ever done for myself.  And it has been the best thing in my life since moving here ... okay, second best because Amos came after I moved here.  You get the point.  It is a good thing.

But yesterday there was this joking or teasing or mocking that started and I was trapped, socially, into laughing along when all I wanted to do was weep.

Words were bantered about concerning how this project had ballooned into something over the top all because I mentioned the trash can.  And yet, from the beginning ... well ... once Firewood Man said he could pave it for me, I knew I wanted a space that had a table and a fire pit and wind chimes and a water feature.  I knew I wanted plants, but I am waiting until I figure out if I want planters that match the privacy panels or large pots.  I knew I wanted some sort of art, but most likely not on the panels and dreamed of finding a cheap stained glass window (I did that!).  I wanted things that would make me feel comfortable and enjoy the space, but not anything crowded.  I absolutely do not believe that what I have created or what I want eventually (as in, the water fountain of some sort) is over the top.  Nor do I think wanting a discreet trash can outside is over the top.  But the twitting and the mocking based on that thought really, really, really hurt.

I mean, if I created a Liberace-themed patio and that made me feel safe and happy, wouldn't that still  be a good thing?  Wouldn't that be something to celebrate and laud?  Firewood Man teases me mightily and drives me to my wits end, but he also makes me feel safe and normal himself.  He never picks on things that are hurtful.  Instead, he picks on things that I mock about myself myself.  He wasn't the one driving the let's-pick-on-Myrtle discourse.  Yet having him be there in that moment made it all the worse for me.

So, I feel crappy on all sorts of levels.  I know in my head that what was said was wrong, was not a true thing, but it doesn't feel wrong.  It feels like the familiar I'll-never-do-anything-right refrain I'm used to hearing.  Especially when it is what is socially right.  SIGH.

Stick and stones
May hurt your bones
But words will never hurt you.


Sunday, April 16, 2017

Do something...

In an effort to escape the crushing loneliness of Easter, I spend the day getting through each moment because I was busing DOING SOMETHING.

  • I took Amos for a walk.
  • I replaced the glass panels for screen ones on both storm doors.
  • I sanded and stained a block of wood for a foot rest.

  • I cleaned out, turned the soil, and added soil mix to the raised bed,.
  • I replaced the water in all three bird baths.
  • I took out the trash.
  • I helped my neighbor with her contract and benefits paperwork.

  • I made honey butter.
  • I brewed tea.
  • I made a pitcher of gatorade.
  • I made a batch of baked oatmeal muffins (but I forgot the blueberries, so it is a naked batch of baked oatmeal muffins).
  • I made a batch of flour tortilla dough balls for my freezer.

  • I changed the sheets on my bed.
  • I gave Amos a bath (he was all sweaty from keeping watch out whilst I was working on the raised bed).
  • I took a shower.
  • I did the laundry from the bedding and the toweling.

I'm bloody exhausted, but I managed to get through this day that is about the wonderful gift Christ brought to this world in His birth, death, and resurrection, but is filled with images of family and loved ones gathering together.  On Thanksgiving, Christmas, and Easter, it is seemingly impossible to escape the fact that I do not have a family and/or loved ones who gather together.  It isn't just loneliness, it is this acute reminder that I do not have a place where I belong.  SIGH.

But I do have this amazing home.  
I do have my beloved Fluffernutter.  
And I do have friends who love me.

Saturday, April 15, 2017

New tech...

When I left being a professor, finding a job with a Ph.D. was rather difficult.  After a long road, I ended up in communications (and grants management, event management, and knowledge management), which turned out to be a wonderful professional challenge.  But it was a long road.  I wish I could have landed there first and had a longer career before my health declined.

When I finally, finally landed a job, it was with a man who owned many, many companies.  I was, essentially, his Gal Friday.  And, in that position, I learned a lot, chief amongst those lessons was building management, which I credit for my greater skill in responsible home ownership.

Back in those days, in addition to the 1,001 I did for him, I was the defacto IT department.  When he switched the employees in his construction company from radios to cell phones, I was the one who programmed them all.  You know, back in the days when you had to program your own cell phone after buying it.  I also managed the server and all the computers.  One of my first big tasks was to install Windows 98 on all of the computers, ones with 256 RAM, and re-install all of the programs the company used.  It was a multiple hour process on each computer.

I had my own computer and my self-sufficiency with it led me to being his IT department.  I knew nothing about servers, but I learned quickly the basics I needed to know, primarily how to add users and manage their settings.  I never really thought about what I was doing or learning.  The work needed to be done and I did it.  The biggest change I brought to the company was when I talked my boss into getting a T-1 line for Internet access.

In the five years that I worked for him (I think it was that long), technology radically changed.  He upgraded the computers twice, the server twice, the Internet connection (we eventually got DSL), the phones five times, and countless versions of new software.  If I am honest, I would admit that by the time I left that job, I knew that I was losing the ability to serve as Chief IT Boss (the title I preferred).  One of the last tasks I did was to learn Net Objects Fusion and create a website for my boss' main company.  It was laughable, but he was one of the first construction companies to have one.

As I moved into the non-profit world and communications, I left behind my IT role, but I brought that  knowledge with me.  IT folk loved me because I was always able to handle my own upgrades and never called for silly problems that only needed someone to hit the Escape key.  Or a restart.

Because most of the calls for IT help were things I could solve, I started helping my co-workers.  I think that many of the problems stem from what I call the Happy Clickster.  If in doubt, folk would just keep clicking, not understanding that the computer, when freed up, would still need to do all the actions from the clicking.  Sometimes I would say in a deep voice: "Step Away From the Mouse!"  It was my way of lightening the moment.

The bittersweet part of my becoming the unofficial HelpDesk support, was that I heard, over and over and over again:  "You are such a great teacher!"  Or I would hear:  "You should be a teacher!"  Oh, how I still miss teaching!  The truth is, though, that whilst I am an excellent teacher, I am horrible at school politics.  I left because I believe that students needed to read their books, take their own notes, and study for their exams.  That stance was at odds with how colleges were beginning to cater to students.  I do not know, had I remained in public schools, if I would have succeeded.  However, finding a job in public school with a Ph.D. was as impossible as finding one in the business sector.

One of the things that I first noticed about my cognitive decline was my growing confusion with technology.  When I tried to talk about it, folk would scoff at me and treat me like I was hinting for compliments.  I wasn't.  I knew what was beginning to happen in my brain.

The days when I can understand technology have long, long gone.  And I am to the point that I simply refuse to try things that will confuse me.  I don't discuss it.  I actually try to hide it.  Not from pride, but from exhaustion.  I am weary of having to convince others that I am confused and struggle with so very many cognitive tasks.

Well, I read an article that strongly recommended that you back up your data.  I am probably the last person who doesn't use the "cloud."  As long as I have had an iPhone, I have backed it up to my computer.  Then, I regularly back up my computer.  Back-ups, I understand.  Clouds are a mystery to me.  The problem is that, with my broken rememberer, I have come to rely more and more and more my Awesome Note app.

It is a note app, that has grown and grown and grown in capabilities.  I, however, still just use it for note.  You can organize your notes by folders and I very much depend on those folders.

The one I have used the most is the shopping folder.  I keep a running list for each store I visit in that folder.  I also have specially running lists that I stick at the end by putting the letter "z" in front of them.

Since I mostly re-read now, I have the need for ready access to the order of the books in my favorite series.  You know, because I cannot remember what order they are even though I read and re-read them all the time.

I haven't been all that great at recording information that is important for my doctors to know, but I am trying to get better at that.  I start and then fall off in my diligence.

My latest folder is for the tasty (but a tad unhealthy) treats I will sometimes have.  Since my ice packs take up so much space in my freezer, I have those treats just in their bags, rather than in their boxes.  So, I created a folder for their cooking times and temperatures.

I have folders for hymn lyrics and house tasks and financial jobs and To-Do items and family info and liturgies and songs that I want to buy and online viewing (streaming) and things that are important to me.  I adore this app and depend on it more and more.

One of the upgrades Awesome Note did a few years ago was to make it so that you can sync it with Evernote.  I created an account and tried that, but I ended up with duplicates and a mess in my folders.  So, I stopped trying to back-up my folders.  But now I needed to know that all my notes would be secure if I lost my data in the current iOS upgrade.

I am very, very, very proud to note that I figured out how to 1) create a back-up of my folders and 2) how to use Apple's iCloud feature to back up the back-up.  Actually, what I think I did is 1) sync all my folders to the Cloud and 2) create a back-up and save that to the Cloud as well.  This was a monumental accomplishment.  As in ... I should be given another advanced degree for learning this because it is that much of an accomplishment for me.

Of course, it turns out that all that worry and hoopla was for nothing.  The operating system upgrade on my phone took forever, but it went without a hitch or glitch.  All my data was present and accounted for once I was done!

Friday, April 14, 2017

Hello spring...

I love my haven.  Although not yet complete, it is already so much more than that for which I hoped.

Yesterday, I had a mid-day (my mid-day) meal out there and stayed in my have for hours.  I started by enjoying this bacon-wrapped fillet topped with Boursin cheese and some sautéed asparagus, along with a peanut butter Nutella cheesecake bar (my last of this batch).  I then wrote some notes and streamed two episodes of "Shetland," a new-to-me British detective show on Netflix that Becky told me about.  I would have stayed out even longer, but after a few hours my computer died (the plug is not yet finished).  Even though my fingers were blue from being out in the cold, I was such a happy girl for my time outside.

I love that Amos loves my haven as much as I do.  He is especially happy with this latest round of furnishing musical chairs.

He now has a spot from which he can keep an eye out on the world.

Or keep an eye out on me.

Or ponder his existence.

Because I have this wonderful space outside, I have seen more of these.

And been sanguine enough to laugh at (rather than despair over) how all of my Easter lilies, once so carefully separated, have all seemed to have somehow migrated to the front of my lily bed.

In between the bouts of illness (in its many symptoms), since gaining my haven, life has been better.  Of course, I shall love my haven even more once I figure out what I want as a water fountain and once Firewood Man has finished off my two outlets and built a frame for my tulip window.  Then, maybe, I might even say that my in-between life is good.

On my walks with Amos, I pass by this clump of tulips.

Even though I have an entire tulip bed, I think I need to find a space in my yard for a clump of tulips ... or two or three.

On my walks I also pass by this tree.  I do not know what it is, although I privately call it a tulip tree. I think I need me a tulip tree in my yard.  Somewhere.  Somehow.

When I get back home, these days, I pause to check on the progress of my redbud tree.  Soon.  Soon and very soon I shall have blossoms!

In the background, you can see that my ornamental pear tree is already in full bloom.  My redbud is a late bloomer compared to all the other ones in the neighborhood.  I have high hopes, though, that this might be the first year that the pear and the redbud have blooming overlaps.  That would certainly be blossom bliss!

The bulbs beneath the ornamental magnolia tree (the blossoms of which where cruelly zapped by a freeze this year) have sprouted.  Although, if you look closely, one clump didn't come up.

As far a blooms go, these are a tad disappointing because the blossoms are too small for me to see with my crappy eyes unless I get down on the ground.  So, today, I got down on the ground and admired them for a while.

A welcome sight amongst all the new growth are the buds on my very non-economical variegated maple tree.  After languishing in the full sun on the other side of the yard, last fall I made a desperate attempt to save it by having Firewood Man move it in the lee of my neighbor's garage.  This way, it only has partial sun.  What was a surprise about this tree (that I discovered last fall after I got some new growth after the leaves all died off in the summer sun) is that the new leaves are not variegated GREEN and white, but are variegated bright pink and yellow and then somehow fade to GREEN and white.  Fascinating, eh?  I am fervently crossing my fingers that the move will me a solid season of growth rather than a season of growth then death then growth then death then growth.

I shall end with this strangle sort of blossom that I found on a tree whilst I was walking.  The sunlight is making these seem yellow, but they are actually GREEN.  So, from afar, my crappy eyes think they are some sort of strange leaves.  But, upon closer inspection, they are blossoms!  I so adore the color GREEN, but I do happen to think that blossoms should be any other color than GREEN so has to shout their presence to the world.

Hello Spring!

Thursday, April 13, 2017

Nothing much has changed...

Last night, I finished watching a show and, after a few minutes, found myself bursting into tears.  Wrapping my arms around myself, I bent over and wept as my body shook from head to toe.  Amos pawed at me until I was able to calm down enough to pull him into my lap.  What a comforter my beloved Fluffernutter can be.

My mind was racing as to why I was weeping, why I was so very, very sad.  At first, I started to spiral, fearing that I was having another hormone flare and wondering just how bad things could get for me if menopause, for me, might means hormones no longer working to even out my levels.  My thoughts were getting bleaker and bleaker until I considered the fact that if I were having a hormone surge—at least all the other times—I was unaware of my insensibility.  And I was insensible, not sad.

That thought alone helped me to crawl back to a place of quietness in my mind.  For a while, I just let myself weep and clutch Amos and wait.  After a long while, I started to think about what I had just watched, an episode of "Madame Secretary."

I really love that show.  I mean, I was prepared to dislike it, thinking it might be another agenda show coming out of Hollywood.  But the show is nothing like I expected.  Teá Leoni is magnificent, as is Tim Daly as her husband, a religion and ethics scholar.  I really like their relationship and their interactions with their children.  But as Secretary of State, Leoni shines.  She can be rock hard one moment and gentle the next.  She is witty and intelligent and always thinking on many fronts when presented with the difficulties that comprise her job.  I think the show has excellent writing and is cast exceptionally well.  Bebe Neuwirth plays the head of Leoni's staff and brings class back to television that has been sorely lacking in that department.

So, why this episode?

Finally, it dawned on me.  The main topic was sex trafficking of women and girls.  The staff became rather depressed after their attempts to save one well-known kidnapped missionary failed.  So many others were rescued, but a truckload of women and girls were found dead.  Suffocated.

Secretary McCord asks them why it was this terrible thing that they saw that felled them when they are daily privy to the horrors of humanity.  I am not sure a real answer was ever given.  I mean, answers were given and I think the point behind them was that McCord had come into the office as a bit of a firebrand and shook up the playing field, but now the work they found themselves doing was more playing to the middle and to compromise where deaths like what they witnessed were par for the course.

I didn't get a sense that the secretary felt smitten by their words or had taken them on as judgement in any fashion.  I am not sure the show writers meant for the audience to join the staff in their conclusion.  I think this was more of an episode ending that was leading viewers to ponder what they had scene and if they themselves were a part of actually making a difference or merely going through the motions having given in to the inevitable.

It took me a long while to realize why I was weeping.  It was not the show or how it was presented.  Again, I find "Madame Secretary" to be truly a cut above most everything else on television.  I realized that what I was weeping for was my own sense of futility that cloaked the staff in melancholy.

Just as the trafficking of women and girls is getting no better, despite public figures coming out staunchly on the side of females all over the world, the plague that is sexual abuse is getting no better.  What I survived is no better.  Despite the progress in the public eye of at least taking the topic out of the darkroom, despite the spotlight that "Law & Order: SVU" has placed on the topic for nearly two decades, the sexual abuse of others is no less common.  Actually, a part of me wonders, with so many shows now having the violent rape scenes that were once seen as too scandalous for television, if sexual abuse has actually become too common.

Mankind will always be comprised of sinners, at least until Jesus returns.  So, this sinful world will always be full of sin, including sexual sin.  But with so much outrage out there fueling the pressure to be politically correct on so many social fronts, why can we not become outraged over sexual abuse and make that the next politically correct behavioral norm? By that I mean, make it so that sexual abuse becomes such an outrage and results in the social bullying of a person to such a profound degree that no one dares take the risk of harming another.

People are "outraged" by so much these days, but I do not see and hear the drumbeat against sexual abuse that I see against the slightest word of intolerance.  During the Australian tennis tournament, I believe, an ESPN broadcaster referred to Serena's play as her guerrilla tactics.  It is a phrase that had been prolific in tennis commentary before (and most likely will be again).  Only the hair-trigger public assumed he said "gorilla" tactics and shortly got him fired (forced to resign).  I know the broadcaster is now suing and, in this instance, I'm all for litigation.  He should not have lost his job.

Besides, to describe Serena's play as employing guerrilla tactics is no longer accurate.  The woman, when at her best, embarks on a shock-and-awe approach that is unmatched in the world of women's tennis, in the world of tennis.  Get with the times when it comes to warfare metaphors!

It is stupid that he lost his job.  It is stupid that the bullies came out in full force against him.  It is stupid that there was such wholesale ignorance shown in the matter.  And yet I want that hair-trigger response to come out in full force against sexual abuse.  I want the bullies and the trolls and the arrogant judgmental pontificators of the world to decimate anyone who dares hurt another sexually.

In the world of Hollywood, the only ones grieving the deaths in that truck were the families of its occupants and the horrified staff.  I am hoping that the writers meant for the message to be that the staff were as equally horrified over the complacency shown in the face of the horror of human trafficking as the deaths themselves.

We live in a world where "boys will be boys" and girls "were asking for it" through their dress or drinking or demeanor.  We live in a world where what goes on behind closed doors can easily stay there.  We live in a world where churches prefer to save face than call out the sin committed against those most vulnerable.  We live in a world where public face in our schools and military and other institutions matter more than the human lives devastated by sexual abuse.  And we live in a world where a professor can assault me and keep his tenure and I, his victim, did not bat an eyelash over the outcome.

I was weeping for the little girl who I was and the woman who I have become, because, in nearly 50 years, nothing much has changed.  There is a part of me exultant over my realization, over not remaining lost in the emotional storm.  And yet there is also a part of me grieving deeply the futility I see in ever hoping for change, for success in the fight against sexual abuse in our society ... in our world.

Wednesday, April 12, 2017

Low points...

One of the low points I've had about my eyes is discovering that the reason that I have not been able to get a good prescription on my new glasses is that my corneas are too dry to adequately find the right correction.  At my last appointment, I was told that I should not come back for three months, long enough to see if the Restasis will help me.

The problem with three months is that you have 60 days from the purchase of your glasses at Walmart to change out the prescription or frames or whatever problems you have.  So, that means that I will have to buy new lenses for both my glasses and sunglasses.  New lenses for both will be $575, when I just spent $642 getting my new set of glasses.  I just don't see how I'll do that.

I am actually fairly good at living with a poor prescription on my glasses.  After all, I went 18 months, I think, once my eyes really began to change prescription-wise.  That is because try-focals—the best way to correct my eyes—are expensive lenses.  Plus, I need the expensive lightweight lenses because of the nerves on the side of my head.  I have to have the lightest glasses presence as possible.

So, what is bothering me is that this set of lenses are not correct and won't be corrected unless I pay to replace them ... as in I would be paying double for them.  I tried to ask for one more appointment with the optometrist (he had already changed my prescription twice since the original appointment), but he said that he was in agreement with the ophthalmologist regarding it being futile to try to find a correction whilst my corneas are so dry.


The other low point that comes with my new normal in the orb department is that, when I put in the drops, I cannot see clearly for a long while afterwards.  This is worse with the gel drops, often taking a half hour for my vision to clear.  Strangely, the gel is not quite so bad, because I can usually see again in about 15-20 minutes.  The extra-strength glycerin takes about 10 minutes, give or take.

It is rather disconcerting to be in a position of being completely unable to read or discern much of anything.  Whilst I have because quite adept, as I have written, at putting gel into my eyes, I have not become accustomed to the lack of vision associated with moisturizing my corneas at all.  It oft is quite a mental and emotional battle for me.  Morning and evening I put in the gel.  Then, throughout the day, I alternate between the gel drops and the glycerin ones, starting first with the gel drops.  So, all throughout the day, even two hours (or sooner if the dryness and pain is too much to bear), I have to battle this lack of vision.

When I realized that I would never be able to run to save myself ... when I realized the impact asthma has on my lungs when I try to run even a very, very short distance ... I was felled by that knowledge.  It was such a sobering and strange realization for me.  Each time I put stuff into my eyes, I am reminded that I am doing so because of the danger of losing my vision beyond just whilst my eyes are absorbing the goop I have put into them.  Like I said ... a mighty battle.

I could say that, fortunately, the Restasis drops, which I must put in every 12 hours like clockwork (I have yet to achieve clockwork status), do not distort my vision.  However, they burn my eyes and they make it feel as if I have something in them.  It is difficult to stop myself from standing in front of the mirror to look for an eyelash or something.  I have to keep telling myself, over and over again, "It's the drops.  Just wait."

I trying to tell myself "At least it's not chemo."  For I think that chemo must be the most difficult thing a person can ever do.  I mean, the first time you have chemo, you really don't know just how bad it will be.  The second time, you know.  And that's not even the worst part.  The worst part is that most chemo is, I believe, cumulative in its effects.  So, the second time is worse than the first.  The third time is worst than the first and the second.  And so and so forth.  I honestly cannot fathom the intestinal fortitude it must take to sit down in a chemo infusion chair.

Even so, despite my eye travails not being as bad as chemo, they have felled me and have left me feeling rather isolated and weary.

All of this is just so inescapable....

Tuesday, April 11, 2017

A new normal...

I've been trying to write what I want to write for hours and cannot seem to get anywhere.  



For years, ever since I was diagnosed with MS, I have had trouble with my vision.  At first, it was just double vision and blurred vision.  Then I started having trouble focusing when changing from far sight to near (and vice versa).  And when I am weary, when my eyes are weary, sometimes I cannot see at all, so blurry that I cannot read or watch something or write.  Then there is the pain when I move my eyes and when I am in bright sunlight.

I stopped really thinking about how much my eyeballs were on the fritz.
That was my normal. 

I thought that the blurriness was getting worse because of my need for new glasses.  I never connected it with how dry and painful my eyes were becoming.  What I learned during my initial appointment with the eye specialist is that my corneas are becoming so dry that they are scattering the light that is hitting them.  It was those words that convinced me to try that rather expensive Restasis that, essentially, you need to take for the rest of your life.

I had this pain flare, from November to March, in which I almost couldn't believe how much worse things got.  My beloved Celebrex seemingly stopped working, as if I were taking a placebo.  I recklessly and shamelessly added ibuprofen to all that I am taking and that helped.  I really didn't care about my liver and kidneys.  I cared about my pain.

But it wasn't just my arthritis.  I had this terrible pain in my right hip (new) and my neuropathic pain had been dialed up past bearable.  My hands were stiff and felt swollen, even though they were not.  I was a walking wretch of human misery.

During all that, it is as if someone also spun a dial on my eyes.  They have become this desert on my face.  I use gel and gel drops and extra strength glycerin drops.  It actually sort of freaks me out how skilled I have become at putting gel into my eyes.  SIGH.  And I used lots and lots of compresses.  Hot compresses.  Cold compresses.  Tepid compresses.  

My eyes burn.
My eyes sting.
My eyes feel as my eyelids are made of sandpaper.

All. The. Time.

A lot of doctors (rheumatologists) have written that the dry eyes of Sjogren's is little more than an inconvenience.  Yeah.  Right.  If you don't deal with that dryness, your corneas become permanently damaged.  And some of us find it difficult to "deal" with the dryness.

As much as I don't want to be tied to Restasis for the rest of my life, I am fervently hoping it works.  In the two dysautonomia forums I frequent, several folk like me said it didn't for them.  Some found it helpful.  I'd like to be part of that group of some.

I go through these spells where my eyes are so bad I cannot imagine getting through the next hour, much less the day or week.  I want to weep, but that just makes my eyes worse.  I cannot help myself at times, though.  When I am on the other side and I have some measure of control over the dryness, where it is more manageable, I hope that I have turned a corner.  

Only I keep finding myself in need of another corner with my eyes.

This new normal is overwhelming.

Monday, April 10, 2017

Weird but good...

Today was a weird day for me.  Walking Amos was hot and sweaty and rather miserable, so, of course, I thought I would keep up the sweating by putting together the fire pit that I got on sale yesterday.  I had barely started and found damage on one part.  So, reluctantly, I dragged myself over to Menard's to get a replacement, with the intention of putting it together there so there would not have to be a third trip.

What should have taken me about ten minutes, took me just over THREE DARN HOURS!  All the while, I had Menard's staff watching me.  I must say, the designer of the fire pit clearly never put one together.  There is a safety ring around the body of the fire pit so that your legs won't touch it when it is hot.  That ring is made of four pieces.  You use four screws to put them onto the body and then four screws to hold them together.  Eight screws.  Three hours.  ARGH!

If you look closely, the design around the barrel is lattice work, so it matches the top of the paneling of my haven.  I thought that was pretty cool!

I bribed the neighbor guy with peanut butter Nutella cheesecake bars to help move the concrete bench.  Strange that I once was able to move that myself.  Now, my "help" was a bit laughable.  However, being me, I just had to get that fire pit in place to see how my space is turning out.  Once he got the bench moved and helped me with the table and chairs (and left with his sweets), I nudged the fire pit nine ways to Sunday, trying to figure out the best spot for it.  Finally, I concluded that I really need a water fountain against the garage wall before I can find the balance that I am wanting.  That will be rather hard since I have no real idea yet of why kind of fountain I want, other than I want to make it myself.

This is a pot at Menard's that I keep coming back to and thinking about when fountain thoughts enter my head.  It is about two feet tall.  There are smaller versions, so I could do one of those stacked-pots fountains.

I would have a different water spray, but I do like this example.  Only I am to sure the pot that I like is the kind you would stack.  I feel like that ... eventually ... I will know what I want.  Hopefully.

Yesterday, I had my first meal out in my haven!  Spicy Dr Pepper pulled pork tacos on blue corn flour tortillas.  Mmmmm!

I admit that I started weeping when I realized that a lady bug had joined me for my inaugural meal.  How auspicious!!  I just adore lady bugs and sort of kind of maybe took this as a sign of good things for me in this space.

Anyway, today was a day without doctor's appointments and without nausea and without confusion and the hours and hours and hours of eye pain had finally ended.  So, there I was, making my dinner (a weird salad of pulled poached chicken, cucumber chunks, goats milk cheese, dried cranberries, and maple chili roasted pumpkin seeds, topped by Briana's Blush Wine Vinaigrette) when the phone rang.

It was this pastor who is working with this Lutheran organization that is launching a campaign to get parishioners to start reading and sharing the Christian Book of Concord.  He wants to use my booklet Dare to Read:  The Christian Book of Concord as a central piece.  No problem.  It's free.  Go forth and download!  Only he also wanted a sort of poster layperson and thought I'd be good.  HAH!

In our email correspondence, I disabused him of that notion.  Then he thought to have a blurb about me in their materials.  I really, really, really don't want the effort to read and share the BOC have anything to do with me ... with the spiritually terrified person that I have become.

He had wanted to talk anyway, to get to know me, and I did want to weigh in with my two cents on what I thought would be good messaging and to demonstrate just how comforting the BOC can be.  It was a long (Of course!  I was talking!!) conversation, during which I got to talk about things that matter to me.  And I got to talk messaging for both the Psalter and the BOC.  He suggested three books that I might want to read, one of which really intrigues me.  And I said I wanted to end our conversation by reading to him.

I did.
A segment of Part V of the Large Catechism.
And my beloved Psalm 77.

I made my point!

My poor little "salad" was still there on the counter when I finished.  I ate it, with a bit more peace than I have had in a while.  Talking about the Psalter and the BOC, getting to share my thoughts, and give the gift of having that goodness in the ears of another ... well, that was just wonderful.

Whilst we were talking, Amos grew agitated, so I move to the kitchen floor and he curled up against me.  After dinner, I went to the sofas and curled up next to him.  But that wasn't enough.  Amos whined and whimpered and shook until I scooped him up and put him on my lap and then smothered him with my large weighted blanket.  He promptly fell asleep and soon started snoring.  Later on, he climbed out beneath the blanket to stuff himself behind my back.  Such an odd little Fluffernutter I have!

The evening ended with one of the ferocious storms that we have here in Fort Wayne.  Six years in and I am no more accustomed to them than when I moved here.  This was one of the torrential downpour varieties.  We also have terrible thunderstorms and wind storms that boggle my mind.  Sometimes I am amazed that my house and my garage and my tree in my haven are still standing.  I love the music that comes out of my large pipe wind chimes during the storms, but I do find myself a bit frightened.

A weird sort of day ... but a good one.