Monday, February 26, 2018


At the risk of sounding oh so repetitive, I have been struggling ever so much.  There is just ... too much ... to endure right now.  As a result, I think, I have been on a bit of a tear around my house doing what I think might be best termed "micro-organizing/downsizing."

For several years now, I have been working on down-sizing my stuff.  In doing so, I discovered, as I have written before, the value of visual rest to me.  Chaos distresses me, and that includes the chaos of mess and the chaos of clutter.  When things are neat and straight and less, I am calmer.

Every night, before I got to bed, the last thing I do is straighten up the first floor.  I used to try have all the dishes done from the day, but I am, more and more often, too weary or too ill to do so.  When that is the case, I work to at least stack the dishes in the sink and clean the counters.  If dishes are still drying throughout the night, I put them away on one of my trips to fetch ice packs, so when I start my day, eventually, I start with a clean slate in the kitchen and elsewhere.

If you have less stuff, it is easier to straighten up.
If you have less stuff, it is easier to maintain a visually restful environment.
If you have less stuff, it is easier to achieve "a place for everything and everything in its place."

Distressed beyond words or even sensibility, I cleaned out a drawer and two small antique wooden boxes.  I've been through them before, but, over time, all organization and down-sizing needs to be repeated.  I've also not been at thorough as I could be, not carefully looking at every single thing in those locations.  I did that, finding things that had been given places since my last time round in this process.

One of the things that I found were business cards.  I seemed to have accumulated stashes of business cards in several locations instead of in one "place."  I collected them all together and put them into a binder that I had in the basement, one with business card holder pages.  But I also went through the pages I already had and organized them.  I came up with seven categories and created title pages for each, which I color-coded and then put into top-loading sheet protectors as dividers.  Since then, when I've discovered a business card that I wanted to keep, I've had a place to put it.

Since then, too, every time I've started to become overwhelmed with distress, if possible, I've looked for something to micro-organize/downsize.

I've also been tending to things put off.  For example, I've found three things long in need of gluing.  Is it even possible to use superglue without gluing your fingers together?  I have replaced batteries.  I have added labels.  And I have needed to do some sewing, especially on a pair of bike shorts that I wear when torturing myself on the treadmill for a few weeks now.  I also have had a scrunchie that needed sewing years ago.  Now it is tended to as well.

Of course, sewing meant that I took the opportunity to clean out my grandmother's sewing kit, something I've never done.  There was so much ... debris ... in the bottom of it.  However, I now have it all organized and clean and have a place for everything in it.

I've been through the bathroom cabinet and the two glove drawers (which I use for other things) on my grandmother's dresser.  I've cleaned out the top drawer in the servant's closet, which meant that I also fetched a few things that were out of place elsewhere and put them where they belong.

It is hard to really explain, but life has been a bit ... slower ... because I keep pausing whatever I am doing to put things in their place or to downsize or both.  Or I am tended to things long neglected.

When organizing, it is far too easy to have things that you simply leave in place for no other reason that you have no idea what to do with them. I would argue that that is a good practice.  You do not want to have anything stopping you from getting started or from finishing.  Only it is good practice to eventually get to the things that you skipped the first, second, or even third time round.  Gosh, I think I might be on my fifth or sixth time through my house, but I am actually thankful to have such organizing and downsizing labor for me, even if it is one thing in each place.

I often think of my dear friend Becky going through my house after I have died, for I very much intended to die here.  I think of her having to decide what to do with my stuff and want that process to be as easy as possible.  Sure, I am most certain she shall snicker at what she finds, but I am confident that were she to go looking for something whilst she is here, that Becky would be able to find it.  I have tried to be logical, for the most part, about my places. And I have also, in each peeling off the layer the proverbial onion that is organizing/downsizing, found stuff that I realized I no longer need.  Or is it want?  The line between needs and wants seem to get blurred when it comes to examining our stuff.

Mostly, I figure she'll gather up all my clothes, bedding, toweling, kitchen items, food, and office supplies and donate them.  And, hopefully, do the same with my books.  She'll toss out all my dissertation stuff that I just haven't been able to toss myself.  And, I figure, toss out all the stuff in my utility closet and garage, other than what can be donated there.

Then there are all my ... stuff ... that is merely decorative, such as my vintage camera collection, the small mementoes from my few travels, the bits and pieces of family history, my rocks and minerals collection, etc.  You know, the stuff that fills the void of memory for me and serves as reminders of memory for most folk.  In close knit families, there would be loved ones who might want those things, but in our isolated, fragmented family, there is little anyone would want.  Mostly, there are a few pieces of furniture and my father's clock that my sister would like.  Also, she would like the pieces of jewelry that are from my family.

It is hard, for me, to think that I have no one to pass on to the things that have meaning to me.  No one who will cherish the antiques I have the way that I have, who will appreciate their history and think of the lives they have ... witnessed, if you will.  SIGH.

Alas, I should not think of this, for it is just more distress upon me, adds to my loneliness.  What soothes me is that, in the past few weeks, my home has become more organized and less.  It is a splendid thing when even opening a drawer provides you visual rest!

Sunday, February 25, 2018

The seemingly impossible...

ARGH!  If only someone could help me keep up with my online rememberer!

I absolutely understand why it is that all of my favorite folk-with-dysautonomia blogs just stopped.  Life gets so very hard and writing about it ... well, who wants to read my misery? fills your mind when you try.  That or brain fog blocks the way.

So, I wanted to back-date and cover the crux of more-bad-news-as-it-happened.  But that is simply not going to happen.  I mean, I cannot get to writing about February 7th and March is nearly here!  SIGH.

Bottom line:  I went to my dentist appointment expecting a little twitting about my ardent love of baking soda toothpaste as the worst to happen.  Unfortunately, that is not what happened.  What happened was that I was told I had three cavities.  I was so shocked that I couldn't find two words to put together and my inability to weep the tears spilling from my soul over just what Sjögren's is doing to my body.  And so soon!

Of course, the other thing coursing through my body was fear.  Not fear of the impending dental work.  Fear of what it will cost.  I was right to be afraid.

Even with a $50 discount card that will then provide discounts on everything for a year, the work will cost $693, for a total of $743.  It might as well be $7,430 or $74,300 as far as I am concerned.  SIGH.

I have spent days and days and days trying to figure out how to pay for this work.  Because there is no question about doing so.  One of the cavities is so bad that I am in danger of having to go straight to a crown ... not that I really understand what that even means.  I'm the good-teeth member of my family.  That one ... infected?? ... the tooth next to it.  The third is encroaching on a fourth tooth.  SIGH.

I haven't just been trying to figure out how to pay for three fillings.  Sjögren's patients usually see a dentist four times a year.  I knew this, but I truly thought that I had more time before it would be affecting my teeth.  After all, I use baking soda toothpaste.  Oh, yes, my teeth were "impressively" clean.  It is just that all of my cavities are between my teeth.  You cannot brush there.

I asked the dentist if I did this to myself because I am just not a flosser.  Flossing, she told me, might have helped, but what I was experiencing was classic Sjögren's.  Oh, I can step up my dental game, but I also have to be prepared for the inevitable: the likely need for dentures.  SIGH.

I am now brushing my teeth four times a day, flossing two times a day, and using a specific Sjögren's-friendly mouth wash twice a day.  I am also already scheduled to start seeing the dentist every six months.  She said she thought I might could get by with two visits a year instead of four since I have been clearly assiduous about my teeth care.

So, I am in need of paying for two visits and a set of x-rays every year as well.
And $743 for fillings.

I am still not sure how I will get everything paid for, especially this year, but I am ... humbled by incredibly generous help from my very dear friend Becky and some from my sister.  I have my dental debt whittled down to $449.  I also worked out what I needed annually and set up yet another monthly automatic savings account and back-filled it for January.  Today is the day all of my savings accounts pull funds.

I was sort of proud of myself for finally working through my shock and fear and upsettedness to figure out what I needed to save.  Then I searched and searched and searched for how to absorb that $35 a month.  Sadly, though, my sister pointed out that I would need to be saving more for my next filling.  Dang it!  She's right, though. I am very thankful for her observation.  More math later, I figured out that I need to be saving at least $66 a month.  That's well and good, but there is no possible way, at all, to jump to that amount until December.  And, really, January is more likely given that December is the month of Christmas.

I will say that I was quite despairing until the news of the help.  The balance left is still overwhelming, seemingly impossible, but God has certainly provided help thus far in a very unexpected way.  And, like I said, humbling.  I am still grieving over my parents rejection of my request for help.

For now, I am trying very hard (and not yet succeeding) to not worry about the impending dental work on Wednesday.  I am not afraid of the dentist.  I am not afraid of the work.  I am afraid of the shot.  Shots actually.  Three of them.  My nerves do not take kindly to be disturbed in any fashion.  I no longer can have a shot in my right arm.  Or, to put it another way, I abjectly refuse to have one.  Four times now, after a shot, I have had terrible pain and numbness along my entire arm for weeks and weeks after a shot.  And the nerves along my pacemaker incision took long past a year to recover.  I am deeply worried that the nerves in my mouth might respond poorly to the shots.

But, of course, there is nothing I can do about it.
If it happens, I can only endure.
And endure.

The work commences at 10:00 AM on Wednesday morning.  Should you believe in prayer, I would deeply appreciate the covering.


Sunday, February 18, 2018

Playing in the kitchen...

So much for ... well ... I'm not going to mention that again.  If I do capture the missing memories, I do.  If not ... ARGH!

It has been an incredibly tough week.  Friday night, just about at the end of my rope, I jumped in the car to use my Menard's rebate to get a replacement squeaky bone for Amos (his new love that has caused him to leave all other loves in the dust) and some summer sausage for me (my childhood love).

This is what happens if you are drowning in upsettedness, have no one to talk to, and find yourself at Menard's.  Those are butter toffee peanuts, if you are wondering.

It helped to do some retail therapy, even though this is the worst possible time to do that.  The absolute worst.  But that's another catch-up post.  I then came home, still upset, turned on Adele, and played in the kitchen.

Someone mentioned a yogurt turmeric marinade to use on a whole turkey breast.  I thought that sounded tasty and worked out how you could use it on boneless, skinless chicken breast.  I bought the ingredients, thawed some chicken, and experimented.

The marinade I created is comprised of whole milk Greek yogurt, lemon juice, minced ginger, garlic, and onion, turmeric, cinnamon, coriander, sea salt, cayenne, and peppercorn medley.   I put the two chicken breasts in a larger bowl, made sure they were thoroughly coated, with no chicken peaking through, cover them with plastic wrap, and stuck them in the refrigerator for 24 hours.

I didn't eat all day and didn't even think about it with all that contraband that I bought.  I did, later on, think about just stopping eating all together.  Maybe I'll just fade away.  Hunger is yet another thing that I have lost through illness.  It is a very, very rare day when I am actually hungry.  The hunger didn't leave with dysautonomia, per se, but with the theophylline.  Hunger ceased on that medication and when I stopped taking it after getting the pacemaker, the hunger never returned.

Sometimes, I think I've been hungry, but it might be more accurate to say that I have been a tiny bit peckish.  Sometimes, I graze, again not of hunger, but of wanting a distraction from what is going on in my head or to pass the time.  It is a weird existence ... especially when doctor's ask me about my appetite all the time.  Well, no, because there is no need to satisfy hunger with this body of mine!   

Of course, spending so very many hours nauseated, eating tasty food has become a passion of mine.  Almost as if eating something savory or sweet, something that lingers on the tongue and mind, is a way of thumbing my nose at the nausea.  So, I really didn't cease eating.

I do think about that often these days.

Instead, Friday I worked on the marinade and Saturday I tried the first of the two cooking methods I wanted to explore with the marinated meat.

Holy Moly!  This was so darned moist I am still shocked!  I read up on roasting chicken and found a cook who said that the longer chicken is in the oven, the more it dries out.  So, naturally, we should be cooking chicken at higher temperatures for shorter times.  I roasted this at 450 degrees, and then broiled it for a few minutes to finish browning the marinade.

It has a thick coating of flavor.  I sliced it in thick slabs and then cut those in thirds.  Each bite had enough marinade to satisfy the desire for flavor.  And every bite was so moist I had to stop and marvel!  I ate half with the broccoli, a quarter cold from the refrigerator, and a quarter reheated with saffron rice.  I was especially glad to see the cold chicken was still tasty.  I do love me some leftover meat straight from the refrigerator.

Since I planned to use the skewers, Saturday night I took the chicken out of the marinade, cubed it, and then returned it to marinade.  Oh, my!  Marinating for 48 hours!   Tonight, I roasted the chicken on skewers.  Mmmm!  I still think that, next time, I will roast it both ways since it is just me here, but maybe not.  The cubed meat would be easier to freeze.

Gosh!  This really is an impressive marinade!

I ate half the meat with my beloved grilled ginger mustard summer squash.  Mmmm!  I am thinking about having the other half with either Lebanese rice pilaf or flatbread, either naan or gyro.  Or, of course, I could just eat it straight from the glass storage container!

Lots to consider.  Perhaps you could try the Turmeric Roasted Chicken and tell me the best way to eat it!

Tuesday, February 06, 2018

[Backdated to capture missed memories.]

I don't want to just keep missing things.  Of course, I keep trying to write.  Like just now.  An hour went by as I battled what happened today, which I want to capture.  Crap.

Last Tuesday, I had a mammogram ... the third  time I made the appointment.  I wasn't going to go.  The last time ... the last time still triggers me.  I understand better, now, about why it was so awful for me, without even talking about it in therapy yet!

For one, my therapist has spoken about how going through experiences like that are trauma for me.  New trauma and old mixed together.  It doesn't matter that it is a medical procedure.  For one like me, it is trauma.  I haven't really processed that yet.  Actually, I am struggling to understand what it means to process something.  But I have heard it.  Hearing has not be my strong suit for a very long time.

To note one other thing ... there were two techs and both were touching me.  Just remembering that ... [shudder] ... I cannot go where that takes me.

I did so very many things right this time round.  And I can hear that without shying away from it or dismissing it.  I worked to make it better.

  • I had comfortable clothing to wear instead of a gown.
  • I had a photo of Amos to look at.
  • I had an advocate talk with the tech ahead of time.
  • I was able to identify what the tech could do to help me.
  • I asked for that help.
  • I had friends stay on the phone with me whilst driving.
  • I planned for it to be just before therapy.
  • I saved the last of my wood for a fire.

I didn't really ask my friends ahead of time to help me.  I mean, the whole world knew about my appointment, but I am not sure anyone was paying attention to my shoutings.  [I really don't use Facebook the way that I'm supposed to do so.]  But I called Mary on the drive between the imaging facility and Becky on the drive between therapy and my home, knowing my realtor would soon be there to distract me.

She was a great blessing to me, for Leslie really wouldn't take "no" for an answer.  She wanted to go with me and I didn't want her to see me the way that I was the last mammogram.  I knew it was a different facility and it would be with a different technician, but still.  Still.

But it snowed four inches and Leslie's day opened up and she just ... didn't accept my "I'll be fine."  And she came up with the best idea ... I go to therapy and she goes to COSTCO for pizza.  And she din't just bring me a slice like last time she went there ... no, she brought me an entire pizza!  Mmmmm!

But the best thing I did was to schedule the mammogram before my therapy appointment.  By doing so, it put me in a safe place where I could ... experience the flashbacks.

I wanted my therapist to make them stop.  I wanted her to ... well ... something.  But she didn't.  She talked with me.  Well, she let me talk.  And talk.  And talk.  I was trying to keep the flashbacks at bay.  And I ended up talking about cooking.

I'd get lost in what I've learned and what I've cooked and what I thought she'd like to try and then ... someone make it stop ... the trembling would worsen, I could feel hands, the fear, the shame, the pain returned ... then she would ask me a question, get me talking about my bliss once more, the only area in my life that has moved forward in the past few years.  

I learned that she was trying to keep me in the present, because that is the way to get through such a storm.  I learned something without ...  well ... I learned something by experiencing it in such a natural and authentic manner that I understood it when she explained the goal afterwards.   Or near the end of my session.  When I was ... easier ... with what was happening.

What I love best about my therapist is that she was a nurse for many, many years.  When I started getting lost in my past, she explained that what was happening was real.  That what I experience now was triggering the emotions from then stored in my brain.  She explained that what was happening in my body was biological, not just some sort of crazy that needs to be medicated away.  Or shushed.

This is the first time that I understood what is meant about moving through the flashbacks.  And my therapist also explained that by talking about things that clearly made me happy ... content ... that I was, in a sense, overwriting those distressing emotions, lightening their burden a little bit by little bit until they no longer hold sway over me.  

I cannot say as I would like to experience what I was experiencing again, but I know that I will.  If nothing else, I have a pelvic exam next October.  SHUDDER.  I am wanting ... very much ... to have my burden lessoned.  And so I show up every Tuesday when my fear would otherwise keep me firmly behind my closed and locked doors.

Amos!  Oh, how my beloved Fluffernutter rose to the occasion.  Once I started to descend into darkness, in a place no one can follow, Amos was there, abandoning his weekly exploration of my therapist's office to leap up into my lap so I could bury my face in his curls as he pressed himself against my chest.  I wouldn't have gotten through that session without him.  I remain in awe that my Good Shepherd has provided a therapist who is bearing almost the full cost of my sessions and who allows Amos to tend to his puppy momma in her distress.  It's almost unbelievable.  

At least, to me it is.

[So, this back-dated rememberer entry took over 13 hours to write.  Once, it would have taken an hour, if that. How am I going to catch up??]   

Friday, February 02, 2018

A new danger...

I shouldn't have been so worried about how my GP was going to receive my request to cease the latest nerve pain medication.  She said she was impressed I stuck with it as long as I did.  She also surprised me with how quickly she believes that I can get off of it, given that duloxetine has a terrible reputation for withdrawal.  Tomorrow, I take one last dose of 60 mg and Sunday switch back down to 30 mg already!  She believes that if I do get withdrawal symptoms, such as the brain zaps, they should not last too long since I have been on the medication for such a short time ... though it has felt like a lifetime to me.

The distressing news is that the neurogenic flushing has now officially caused rosacea.  Fun times.  My main concern is that, on the left side, where it is worse, I am now experiencing ocular rosacea.  My poor, beleaguered eyes do not need any further dryness!  So, I am a bit frantic to find something to help before the ocular rosacea worsens.  Sadly, there is little to be done, although I found a few studies of neurogenic rosacea, a new fifth subset of rosacea, that suggest an off-label use of an OTC drug.  I am interesting in trying that.  Although, tell me, how would one go about applying a nasal spray topically??????

Now that it is not merely my skin, but further danger to one of my eyes?  Well, I have started asking my GP to move this to the top of the agenda instead of languishing at the bottom.  It is one of those thing that just has to be so darned complex and out of the purview of most doctors.  Normally, you would see a dermatologist and work on triggers.  But, with neurogenic rosacea, the triggers are within my faulty autonomic systems.  And, with the skin of the face, you have the sympathetic, parasympathetic, and sensory systems all at play.

I am galvanized about putting my research skills to work to see what I can find.  After an initial search, I have four good articles to start, though one of them is so technical that I can only understand a small fraction of the text.  Once I have a goodly collection, I plant to give an annotated bibliography of them to my GP.  She also has a doctor friend who is currently in India but who might be informed on possible treatment for ocular rosacea.

I have to admit, it crushes me to have what I now consider a clown face.  When I flush on the left side, there is a large letter C on my face, or maybe better put a tilted letter U.  So there is this gap in the center and on one side where my skin is the pale tone that I have had my entire life.  When I am not flushing, I still have redness on both cheeks and on the bottom of the left side of my face.  I very much dislike looking in the mirror these days because I no longer recognize myself.  And I am stunned at just how much my skin has become damaged in the past few months.


Thursday, February 01, 2018

Midnight comfort...

There are so very many days where all I accomplish is getting up, feeding Amos, walking on the treadmill, feeding myself, and napping.  It still boggles my mind that great chunks of time can pass without my streaming or reading.  More and more, I find myself just ... resting ... from whatever arduous task I have done, such as get out of bed.  SIGH.

One of the side effects of the third nerve pain medication is excessive sweating from the head and face.  It is ... gross ... to me.  But it has also be a bit of an encouragement in this strange sort of way.  You see, I sweat when something is difficult for me to do, such as walking on the treadmill.  But the treadmill is not the only arduous task I face in a day.  It tickles me, in a way, that I find myself drenched after getting out of bed and dressing myself.  I have to wrap a towel around my shoulders to keep my clothing from becoming sopping wet and have to wait on any powder or mascara (about the only make-up I wear anymore) until I can wash my face after I finally stop sweating.  Why does it tickle me?  Well, I now have objective proof that getting up and getting ready is difficult for me!

The same is true for standing.  The longer I stand still, the harder it is for me to remain upright.  It is one of the chief reasons why cooking is so very difficult for me.  Yes, I get confused following the recipes.  Yes, I miss-measure quite a bit.  Yes, I even forget that I am cooking and end up burning things.  However, I also start sweating up a storm from the strain of standing.  I would do that even before I started this medication, which is why I was so very blessed when my sister bought me a fan for the kitchen.  However, now, I could fill up a kiddy pool with the sweat pouring off of me whilst I cook.  Sweating and cooking do not go well together, which is the main reason I haven't done much of that of late.  That and the whole IDON'TCARE side effect.  SIGH.

I am very, very,  very nervous about my GP appointment on the morrow, even though I am continually amazed at what a wonderful doctor she is to and for me.  I believe I have a very strong case to cease the duloxetine and it was my idea to try it in the first place.  However, I do trust her and if she wants me to continue taking it, even after I present my case, I would be hard pressed not to acquiesce to her request.

I am rather nervous about getting off of the medication, for like three other medications I am on, I have to be weaned off of it.  I have been battling wretched headache since going back to 60 mg after having been on 90 mg for 10 days or so, but the change was not as bad as I worried it might be.  I am most worried about going back down to 30 and then off if it from there.  The medication are capsules with little beads in them and some folk, when going off the medication, count out the beads to gradually decrease the medication because withdrawal can be so very brutal.  I am hoping it is not that way for me since I have only been on it for a little over two months.

Anyway, today i did a bit more:  I tortured myself on the treadmill, did my hand weights exercises and squats, reconciled two months of my bank register, paid bills, filed paperwork, took out the trash and the recycling and put the bins out in the alley, cleaned the stove, gave Amos his monthly heart worm pill, watered the plants in the solarium, scrubbed the tub, shaved the callouses on my feet, showered, and lit a fire. Oh, yes, I also fervently hoped the glop will soon start working. Day 17 of stalled innards.  SIGH.

I tended my feet because tomorrow my GP will be examining them.  To me, not having cracked heals and callouses is like not wearing dirty underwear to the doctor.  I have an ancient pedegg and this weird sort of emery board for feet.  I shave with the pedegg and then smooth with the emery board.  I used to then also use a peppermint foot scrub and finish off with peppermint lotion, but I just washed my feet in the shower as I would normally.  And I put on plain lotion, though I would have preferred the peppermint.

It is weird tending to my feet now because I get wigged out over them.  You see, if not in wool socks, they turn blue.  Even in the shower, my feet get cold.  I keep thinking about putting the plug in the tub when I shower so the warm water builds up, but I never remember when I am actually in there. Anyhow, it is just plain disconcerting to be working on your feet and watching them turn blue and feeling your fingers and hands grow cold from the icy skin of your feet.  Essentially, the Reynaud's is much worse.

Sometimes, on the treadmill, my feet turn into blocks of ice and it makes it difficult for me to walk.  My wool socks are too thick to wear in my shoes.  You would think that half killing myself on the treadmill would keep my feet warm, but it doesn't.  If I were still working and had disposable income, I would regularly buy those foot warmer pad thingamajigs that hunters and folk going to football games in winter use.  The struggle to keep my feet warm is yet another one of the daily battles I must face and which wearies me.  SIGH.

The glop hasn't worked yet, so I am in need of a bit of midnight comfort.  Tonight, I decided that would be a Dr Pepper.  Surely Dr Pepper will help things start moving along, eh?  Dr Pepper and a section of Panera French bread.  I received a gift card to there at Christmas.  Ever since I figured out how to keep French bread fresh in the freezer—I divide it into six portions, wrap each up in plastic wrap, and then put all the portions in a gallon ziploc bag—I added French bread to my meal rotation. Sixteen seconds in the microwave will thaw the bread, but not cook it, so you can still tear into it with great satisfaction.  I like eating it with a slab of extra sharp cheddar cheese.  Doesn't midnight Dr Pepper, French bread, and cheddar cheese sound like just the trick to finally turn the tide on seemingly never-ending constipation?

Seriously, I am beginning to resent Amos' ability to leave deposits out in the back yard three times a day.  At this rate, I would settle for three times a week.  Living with croci illness stinks.  SIGH.