Monday, April 16, 2018

Long lost...

I reached out to someone who was a dear friend to me when I was getting my Ph.D..  She had given me her daughter's sonogram in this most loving of cards and I had held onto for all these years.  I thought that it would be a great birthday present for her sixteenth.  Over the past twenty plus years, I have prayed over that small photo and often wondered how my friend was.

I do not remember how or why it is that we are no longer friends.  I do not remember her at all.  I do not remember our friendship.  I remember facts about her ... a few.  She was absolutely a kindred spirit in a literary fashion.  She was also the cool kid on the playground I never dreamed would be my friend.  I think, though I am not sure, she was a master's student whilst I was in the doctoral program. Perhaps I am wrong.  In any case, she holds her doctorate now.

When I got out the card to pray for her and her daughter, I thought to Google her.  The first hit was her profile page at her college with her email right smack at the top of the page.  In bold.  In blue.  Almost pulsating on the page.

I finally worked up the courage to click on the link.
Girding my loins is exhausting these days.

She sent me her address so that I could return the sonogram and said she would like to catch up some time.  As my dear friends know, being my friend is not exactly easy these days.  Celia gifted me with a FaceTime call tonight and I wasted the few precious minutes with her talking about medical stuff.  SIGH.  If not medical woes, then financial ones.  If not that, then my talk is filled with cooking and recipes and ingredients and culinary dreams.  If you are not into cooking, I can be extremely boring.  And, if not cooking, I am most ridiculous about my beloved Fluffernutter. Seven years on I remain amazed at just how attentive and comforting he can be ... when he's not too busy being a RAT BASTARD.

Still, even though I was quite clear that I am not friend material and I cannot remember anything of our friendship, I did give her my phone number (and hint about how much I like texting) and my Facebook identity.  I didn't hold out any hope she'd want to connect once more.

My old friend immediately friended me.  Fear and trepidation followed at her discovering just how weak and weary I have become.  And yet she also warmed the cockles of my heart.

Should she really want to catch up, I offered my B&B.  You see, my old friend is just three hours away from me.  She could visit, perhaps, if she wanted.  Will she?

I think it would be immensely difficult if she chose to visit because I have no memory.  I moved away from Becky and we are dear friends.  Mary and Celia I met "online" and are far away from me (though Celia actually moved closer), but both are dear friends.  All three women are true kindred spirits and amaze me anew each day that we are friends.

I do not remember them.  Mary and I have been friends for year now, but to me I have this sense I just met her.  She's visited three times.  Or is it four?  I only have photos of one visit, so I think of that one.  But then she had just two children.  Now she has six.  That alone speaks of a lengthy friendship, but I remember it not.

I am like a little kid these days.  Tell me a story.  Tell me a story of me.  Tell me a story of us.  Tell me a story so that I can know we are truly friends.  I work really, really, really hard not to ask, but I long to do so with everyone.

My friend Caryl, whom I met in the course of working, recently mentioned that we've been friends for twenty years.  Not quite, it turns out, but close.  NO BLOOMING WAY!  She started to mention a work road trip we took once and I immediately wanted to say, "Tell me that story."  But I didn't.

So, how would it be to reconnect with a long lost friend whom you do not even remember?  I think I would just make things ever too awkward for her.  But ... but ... but I still hope we might could find our way back to being friends.  That would warm the cockles of my lonely heart.

And my cockles could use some warming.

Sunday, April 15, 2018

Side effects...

Oh, my!  Is the pilocarpine throwing me for a loop!  This is the medication to try and increase saliva to help with the Sicca Syndrome in my mouth and throat that is a result of Sjögren's Syndrome.  Sicca is the dryness.

Sicca in my eyes.
Sicca in my mouth.
Sicca in my throat.
Sicca in my sinuses.
Sicca in my skin.
Sicca in my lips.

Fun times.

Because of several adverse side effects, you start the medication at a tiny fraction of the end dose.  The first two weeks were not that difficult for me.  However, Week Three has not been going well.  I am insanely dizzy, where I often find myself listing or the world listing or both.  I am also insanely tired.  I fall asleep at the drop of the hat and have to actively work at staying awake.  I even started falling asleep on the treadmill!  Like I said ... insane.

The third side effect, abdominal pain, has been more mild. However, when you are struck with a bout of pain that caused you to curve inward to stand against it, the pain is still disturbing.  It disturbs my body.  And it disturbs my mind.

It is no secret that I am deeply torn about this drug.  The monthly cost of it is not really sustainable for me.  However, this is for the Sicca in my mouth.  I've already had three cavities.  Me!  And I just read another post in the support group from someone who's now lost all her teeth. This woman lost all hers in a year!  Such sobering tales of dental suffering I read.

So, whilst I want to all ready quit the medication for how difficult it is being on it and the cost of it, I want my teeth to stay in my head!

The thing about dysautonomia, medication becomes this rather strange world in your life.  So often, you are taking medication for its side effects.  Then, because you are often on lots of medications, you have to worry about how the medications side effects will work together.  Then, like now and with the duloxetine, you have medications that you want to take for what they do, but their side effects prevent you from doing so.  SIGH.

The battle the past few days has me questioning my own sanity.   Why would you want to put yourself through this, Myrtle?  But riding the side effects roller coaster is part and parcel to living with chronic, incurable illnesses.

Still, I've been mighty ill since Thursday.

Friday, April 13, 2018


I have been working to have some structure ... some routine in my world.  I mean, I do most everything with a process, a routine, if you will, so that I know that it will be done correctly, so that I will not miss important steps, so that I will have some success.

It is hard for me when folk visit who do not understand how the processes help me get through what I need to do.  I struggle with forgetting so deeply that I have to have a set way of doing things that I can follow.  When others distract me from my process, I make mistakes.  And mistakes make me agitated.  And I forget more.  And things just fall to pieces.  I fall to pieces.

I do worry about being seen as OCD, because I've heard a few jokes about that.  Only my therapist has assured me that what I am doing is I am coping with my deficits, not trapped in mental illness.  Fearing that another routine is just going to send me further up the river, I nevertheless have chosen structure for every other Friday.

On most Fridays, I run the dishwasher.  However, I only run it if it has a full load.  Sometimes it takes more than a week to fill it up.  And, on Fridays, I am following my goal of being a more responsible pet and homeowner by keeping the yard cleaner than I had been doing.  So, those two tasks get done whether or not it is my newish Friday.

Every other week, I now strip the bedding and remake it.  That is such a gargantuan effort for me, one I realized that I was taking longer and longer and longer to get around to doing.  Now, I know I have fresh sheets at least every other week.  I would like them every week, but fresh sheets also means laundry and laundry is difficult for me.

On these Fridays, I also do the laundry on account of the aforementioned dirty sheets.  I work hard to collect everything possible that needs washing, including the hand towels I so oft forget.  I sort it and do between two and four loads, usually two of them.  This way, I have fresh sheets and my pile of laundry is gone.  By having this structure, I know that I will have the things I long for at least every other week.

There are small ways that I am trying to build some structure into my life, but, of course, I cannot think of them at the moment and I did resolve not to leave my entries hanging  for days and weeks trying to finish them.

Suffice it to say, I like knowing that I have a plan for those Friday nights.

In the winter, I try to exercise early so that I can shower early so that I can spend the evening (when not doing laundry) roasting before the fire.  I find the time rather peaceful, knowing that I am ... well ... being normal for a time, getting something done, and getting it done in a time and manner of my choosing.

And there is something sort of safe about structure.  Comforting.  Knowing it will be there no matter how things are going.  SIGH.

Thursday, April 12, 2018

A before and after...

I did a Spring Cleaning in my home, in part because it needed it and in part to see just what it would take to do it all within a short enough time that I could enjoy cleanliness all at once.  It was a gargantuan effort.  But I have thoroughly enjoyed, these past few days, having a fully clean home.  Usually, everywhere I look I am reminded of how poorly I keep house now.  Or I am reminded of how strongly my vision is being affected by my illness.  But, right now, for the moment, all I see is a clean and lovely home.

I also have a full larder ... well, almost full.  Yesterday, I made another batch of Chilorio and one of Peruvian Pork Stew with Chilis, Lime, and Apples.  Good times with pork!  I remembered to use the new fan my sister got me last year (I oft forget), and so the effort was peaceful and cool for me.  I was able to clean as I went, so I did not end with a massive amount of dish labor.  Plus, I thought to take a before and after photo of the stew!

Wait!  How could that be stew?

Through the magic of cast iron!

Afterwards, I wrote the following on Facebook:

One of the great blessings I've had in falling ill is the necessity of learning to cook so that I can avoid those hard-to-digest unpronounceables in processed food.

Meal options from my freezer now:

Spicy Dr Pepper Pulled Pork
Peruvian Pork Stew with Chiles, Lime, and Apple
Pomegranate Pulled Pork
Spicy Corn Chowder
Chipotle Chicken Chili
Black-Eyed Pea Medley
Beef Stew with Beer
Lemon Chicken (for gyros)
Vietnamese Chicken Curry
Santa Fe Soup
Sun-dried Tomato Chicken Meatballs
Homegrown Tomato Sauce
Butternut Squash Ravioli (commercial)

I also have naan, gyro, and Texas flour tortilla dough balls and vegetable stock.

My goal is to add Chicken Tikka Masala and Shish Tawook with Lebanese Rice Pilaf. The former I've made. The latter is the next new recipe that I am gearing up to try.

It it is nice to have good things in the midst of less than good.

I am of two minds about the appointment today with the podiatrist.  Mostly, I feel that it was a waste of time because I do not believe that she was listening to me.  Her treatment plan is: inserts, good shoes, stretching, and ice.  I've already done stretching, ice, and good shoes.  I just cannot see how adding inserts is going to help.  Maybe in prevention, but how can inserts reduce inflammation??

The hard part was that I was nervous and talked too much and then very nearly keeled over.  She was having me walk around the round.  Around and around and around.  I avoid morning appointments because I faint more in the mornings.  This was a cancelation that got me in nearly two months quicker.  However, there I was, going down.  I did end up flat on the floor trying to avoid the practically inevitable.

My pacemaker went off and I had that pressure in my neck, but still I kept walking.  Trying to be the compliant patient.  Being a rather foolish patient.  I did try to say that I needed to get down.  She thought I said "sit down" and guided me back to the chair.  I slid to the floor, eventually, and got my feet up.  I was feeling rather awful, but still tried to push through.

I did feel as if there was a concerted effort to get me gone.  I had brought my shoes with me and so needed to put them all back into my backpack.  With no other recourse, I was standing as I did so.  Standing after a near-faint.  I started feeling the pre-syncope coming on again.  I was left alone to make my way back to the waiting room and took a very, very, very long time to trudge back there.  Reception took once look at me and ordered a wheelchair, took me to valet parking (which I had not realized was there), and got the man to fetch my car even though I was the one who had parked it.

I was not scheduled for a follow up, so I am still wondering what was the point of the visit.  She did mention, before I went down, that if the pain continued I could have a shot in my heel.  I am trying to decide if I should write my GP a message to ask if she could communicate that I had already been following the treatment plan or try to write that message myself ... or wait three weeks until I see my GP next.

Filled with disappointment, though already seeing how the inserts could be of value, I went to get my blood work done.  I had to wait about a half hour in reception there, but I laid down after about five minutes.  The extended rest helped me.

What was most lovely about the lab visit was two-fold:  1) the stick was amazing, almost undetectable and 2) my blood flowed extremely quickly from my hand.  Normally, it flows slowly, which is why asking for a hand-stick usually nets quite a bit of resistance to the request.  But, this time, the vials were filled so quickly I was in a bit of disbelief.

What is not lovely is that some of the results have already been posted.  And my kidney function, despite reducing the Celebrex in order to better my kidney function in preparation for having the dye needed in a contrast MRI.  I am not looking forward to how my GP receives the results.  At least one question was answered though:  dropping the Celebrex by a third was not nearly enough to ready for an MRI.  Not by a long-shot.

I try very hard not to think about the poor kidney function too much ... what that really means for me now.  What it could mean later.

For the record, the doctor said that Sjögren's can definitely affect plantar fasciitis.  That's what I'm blaming for this new wretchedness determined to stay with me.

I think about the before and after of Sjögren's in my life quite a bit.  I feel as if few in my life are listening when I try to talk about it.  Such an extraordinary change in such a relatively short period of time.  It is a before and after that boggles my mind.  And troubles my soul.

Wednesday, April 11, 2018


Sometimes, I think that I will never get back to my blog the way that I long to do so.  It has been a part of my life since a time when most folk didn't even know what the word "blog" was.  I am just so bloody overwhelmed that it is hard to do most everything.

I am reeling from what I think maybe I should call death by a thousand cuts because I keep getting less than good medical news, which means less than good financial news.  And I am still flattened by the realization of what my parents think of and about me.

So, I stumble through every moment and always fail to gather myself enough to write the way that I long to do so.  But.  But maybe I should try to just write.  As in, write what I can and post even if it is unfinished or error-filled or just not what it is that I set out to say.

I am losing my hair.  I laugh, bitterly, at the vague memory of all the early posts where my hair was falling out.  I raged at the hair in my hands.  I huddled in the corner of the shower (not that my shower had corners since it was in a bathtub).  I wailed to the world.  Now, I just cannot cobble together the words.

I washed my hair tonight.
This came away in my hands.

If you know me, then you know what this means to me.  No, wait.  You know a tiny fraction of what this means to me, of what my hair means and has meant to me.  So, you can begin to grasp the loss.  But there really are no words.

However, this isn't really what I meant to write or rather what I long to write.  To record.  To capture. To work through in the one way I truly know how to work through something.  To write.

I am triggered.

There I was, watching this seemingly non-triggering show and I realized that my entire being was trembling.  I was fighting an overwhelming urge to go shove myself into the corner of the closet upstairs because of the certainty that bad things were happening.  Now.

I do not know what triggered me or what it is that I am struggling not to relive.  Or reliving and struggling not to remain aware for the experience.  I could maybe try to ask myself questions, as if I were in therapy.  But I am not, actually, in therapy.  I am frozen to the corner of my sofa, cold and stiff with terror.  My pacemaker is going off willy nilly, not giving me a break because my body and mind are raging against one another.  Or maybe they are each trying to pull away, but have chosen different directions.

I don't know.
I don't know what is wrong.
And I don't know what is right.

I don't know what I want, other than for what is happening to me in this very moment to stop.  It it too late to call either Becky or Mary.  It is too hidden for me to try to help myself (not that I am even remotely in a place where I could help myself).

I am trying to at least capture this moment, but my body is now fighting me.  My eyes hurt so badly that I find myself closing them tightly against the pain.  In turn, this is causing a deafening roar in my ears from the tensor tympani muscle contracting.  I keep searching for the train that is not coming, yet my body knows is nearly upon me.

What a sound that only I can hear!

At least the thought is a momentary distraction, a spate of time in which I am divorced from what my triggered self is doing, is experiencing.  SIGH.

Tuesday, March 27, 2018

Less and less...

Watching television shows and movies has become harder and harder for me.  I cannot tolerate ones that make me anxious or drag me down into darkness.  I am weary of criminal shows where the bad guy is a masterful psychopath constantly outsmarting everyone else, including the ones who have either hacked the authorities or have moles working for them.

I am also weary of shows where the storyline has sex peppered throughout.  For example, I tried watching the new show "Station 19," a spin-off from "Grey's Anatomy."  Where I like "Chicago Fire," even with its heavy dose of interpersonal relationships and light treatment of calls out in the community, "Station 19" had but a fraction of firehouse calls and a suffocating dose of interpersonal relationships, including sex.

Gosh, "Grey's Anatomy" has you believing that half the activity in a hospital is sex.  Talking about sex.  Before sex.  Having sex.  After sex.  You do get some good medicine in there, but the promiscuity and cheating that goes on is appalling.  I just do not think that hospital culture is truly that lewd and salacious.

Why is it that there are not more shows like "Blue Bloods," a show rife with interpersonal relationships but where sex just isn't a factor.  The rest of life is.

I want a story, not a distraction.  And I want a realistic story, unless I'm watching science fiction.  I want a beginning, middle, and end.  I want thoughtfulness.  I want workplace integrity.  I want a realistic look at the lives of those involved outside of the story.  And I want bad guys who are not exceptionally brilliant psychopaths.

Is that too much?

I have enjoyed "Marvel's Agents of S.h.i.e.l.d," but the ongoing torture of the team is just a bit much. I glimpsed a bit of a review of this past episode and have, thus, not watched it.  Poor Fitz ... I hear he gets broken.  I just do not want to watch that.

I do like shows that explore how broken people function or how broken people heal.  But I need to be in the right headspace to watch the breaking.  And I'm not there.  Nor do I want to go there anymore.  I want to finish the story of S.h.i.e.l.d., but I do not think that I can endure it.

"Fringe" ... now there was a show where team members went through the ringer at times and when the world seemed lost.  But the show's writing team never left you in true despair.  I miss "Fringe."

And "Lethal Weapon."  The brilliance of that show is that a viewer could almost just stick with the slick and skip the interpersonal development.  But a viewer can also savor a continual journey from an abusive past and adult loss to creating safety and building family.  As far as storylines goes, Fox offers a hauntingly beautiful pathos in this action-flick-turned-television-series.  Just brilliant ... at least it is to me.

More and more, I find myself retreating to older shows or British, Irish, Australian, Scottish, or Canadian ones.  Whenever I feel a disturbing angst beginning to well within me, I jump online to read a recap or movie synopsis to see if I am being led down a path from which I might not return.  If so, I stop watching.  That is a marvel and a sadness to me.  I stop watching.

I stop because I have become so very weak.
Weak and weary.
In body.  In mind.  In spirit.

So as lonely as I am and as much need have I for distraction from bodily wretchedness, I often choose silence over streaming.

You know, what is needed is a streaming service that is for the weak and weary.  That would be great.  Heck, I'd subscribe.  And I bet a lot of folk in the support groups online would welcome the same.

Sunday, March 18, 2018

A bit of structure...

You know, I really like Marvel's Agents of S.H.I.E.L.D., but the writers are really pushing the envelope of believability.  I mean, gee, you don't bring alien tech back to your stronghold.  Period.  And if you are going into a place that magnifies your fears, you don't listen to the first guy you see who is supposed to be dead and who admits to being a figment of your imagination (fear).  YOU SHOOT THE GUY ON FIRST SIGHT!

I sometimes think of writing and how much I miss it and how much I ache for not doing what I wanted to do, not being what I wanted to be, whenever I watch television shows or movies.  The good.  The bad.  I often think about the writing, the story, as much as I do anything else.

And then, of course, I think about the story of my life.  It is one that saddens me greatly.  SIGH.

I have been working on a bit of structure in my life, so every other Friday, I have started changing my sheets.  I'd like them changed every week.  Heck, if I were wealthy, I'd have them changed daily.  Fresh sheets are such a pleasure.  Anyway, changing the bedding is rather arduous for me, terribly difficult and draining.  Still, I wanted to establish a routine of sorts to ensure that I have fresh sheets at least every two weeks.

It is isn't just fresh sheets every two weeks.  I have been doing the laundry that day, usually one load of my things and one of the bedding.  Up and down the stairs is wearying.  Bending over the machines is wearying.  Hanging the laundry is wearying.  Folding the laundry is wearying.  Still, I like having a routine.

I try to torture myself early, so that I can get to the chores earlier in the day.  First exercise then I cool down.  After that I change the bedding out, which is as exhausting as exercising.  Next comes a shower, which is also exhausting.  Then, my sweaty exercise clothing is added to my laundry pile and I cart the overflowing basket downstairs.  Yes, you guessed it.  Doing that is exhausting.  Really, all this structure is exceedingly exhausting!

But, then, before I take the laundry down another flight of stairs, I lay a fire.  This involves getting a fire starter out of the deacon's bench.  The deacon's bench, which serves as my downstairs closet, that has a terribly heavy lid and requires that I bend over as I open it.  Bending over makes me faint unless I am very, very, very careful.  [NOTE:  It is hard to be very, very, very careful when one is already exhausted.]   Then, I put all the kindling into the fireplace and set my fire starter in the center of it with a fire stick (Firewood Man cuts 1.5-2 inch pieces of wood for me to use to start my fires) right above it.  Next, I fetch a load of wood that is smaller pieces, so that the fire will start easily.  I stack those above the kindling on the andirons.  Finally, I fetch a second load of wood that is comprised of larger pieces of wood that will burn well once the fire has been going for a while.

Fire laying is exhausting.

I do that before I go downstairs to start the laundry, because I can get an impressive fire in just a couple of minutes.  If I light the fire before I go downstairs, then I come back upstairs to a roaring fire and sofas inviting me to rest.

After that, my DO SOMETHING has mostly ended.  I make myself a meal, having usually planned for something that is the shortest amount of preparing time, such as black-eyed peas medley, beef stew with beer, or spicy corn chowder.  And I collapse on the sofa, with my only goal for the rest of the evening is to keep remembering that I am doing laundry so that I can get it done save for folding the things that will be air-drying overnight.  My goal has been to collapse on said sofa by 7:00 PM or there abouts so that I can have a good, long fire.

Going to bed on Friday nights is heavenly, for I am sliding between fresh sheets.  And I have had an evening of fires (as long as it is cold ... which it has been since I started this structure plan).  And I have had an evening of snuggling Amos, guilt free, having done the work of changing my bedding and doing my laundry.

So, my Fridays are nothing special on the outside, but they have become a real blessing to me with the structure and soothing fire (and snuggling) that takes place.

* * * *

Golly Gee Wilikers!  That simple entry in my online rememberer has taken me FOUR DARN DAYS to write.  I absolutely HATE what a slog fest trying to use my brain has become!  ARGH.

I am missing so darn much of my life these days.  I want to have something recording this time since I won't remember it.  But I am at a loss as how to do so with how hard writing has become now.  SIGH.

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.

Wednesday, January 31, 2018


Trying to take the third nerve pain medication has been terribly arduous for me and I am crying "Uncle" at my GP appointment on Friday.

To be indelicate, I have not pooped since I started the 90 mg dose on the 16th of January.  Monday, I messaged my GP and switched back to 60 mg.  It is my hope that dropping back to the previous dose will help the constipation.  My most fervent hope.

I found this constipation recipe from a pharmacist: 1 cup applesauce, 1 cup coarse, unprocessed bran, and 3/4 cup prune juice. Mix all the ingredients together. They will turn into a pasty, stiff glop about the consistency of peanut butter. After mixing, it should be kept refrigerated. Take one or two tablespoons daily and wash it down with a full eight ounces of water.  

I made the glop tonight and took one tablespoon.  ICK!  I added a generous measure of honey before taking the second tablespoon.  Better.  I hope it helps.  Fervently.
The reason I am crying "Uncle" is not just the constipation, but primarily because of the clenching (which I've learned is muscle spasms), which is, in turn, causing multiple Trigeminal Neuralgia flares every day.  And the increased sicca.  Life is brutal at the moment.

My therapist, who was a nurse for 20 years, believes the new medication is causing the increase in Sicca Syndrome (what causes the severe dryness that comes with having Sjögren's Syndrome).  My eyes, throat, and sinuses are terrible, as if I am not taking any of the medications I am using currently.  And my lips are cracking, too.  I put in eye drops or gels every hour.  I rotate nasal spray, nasal emollient, and nasal gel every two hours.  I put lip balm on every two hours.  And I take olive oil three times a day, trace minerals, three times a day, have more than doubled what I drink (now over 100 ounces), and have doubled the hyaluronic acid to try and address my desert dry throat.  All this and I am taking my other medications eight times a day.  It's exhausting just trying to make my daily existence manageable.

In the past few days, my eyes have gotten so bad that I am having trouble sleeping.  They are as bad as they were before starting Restasis and all the other eye drops and gels.  And my vision is so very blurry that I can no longer drive at night.  Along with the other increased dryness, the medication side effects, and the normal symptoms I battle daily, my bodily misery has escalated beyond what I can endure.  SIGH.


Monday, January 22, 2018


One of the things that has been difficult to endure of late, aside from the attack of the Trigeminal Neuralgia, is the sicca syndrome that companion to Sjögren's Syndrome.  It is possible to have sicca syndrome without having Sjögren's, but sicca is usually the presenting set of symptoms with Sjögren's.  It is the excessive dryness of tissue:  skin, eyes, lips, mouth, throat, sinuses, and private areas.  Generally, you hear about the eyes and the mouth.

I am rather thankful that I do not have a severe dry mouth.  Mine is dry, but the go-to help of Biotine works for me.  However, as I have written before, I have dry eyes, a dry throat, and dry sinuses.  And, well, dry lips, but I am ignoring those in light of the Big Three that are plaguing me.  The thing is, that which I have been doing to manage those symptoms are no longer working for me.  I mean, they are working, but no longer well enough.

I wrote about my eyes, about the specialist discussing cauterizing closed my tear ducts as a next step if the drops-every-hour doesn't start moving the needle for my beleaguered corneas.  With my throat and my sinuses, the dryness is worsening as well.

With my sinuses, there are more things that I can try.  The nasal emollient helped and is still helping because it shoots up rather high.  But I am back to bleeding and large scabs every day.  I just started using nasal gel and have some nasal mist on the way to see if I can get more moisture up my nose!  I snort the steam in the shower and use saline spray every day.  And I have the house humidifier set higher.  I still haven't gotten the hang of using the nasal gel.  I suppose there might be a You-Tube video for that, but I haven't looked.  I am quite skilled at sticking gel in my eyes, which I've always been squeamish about when it came to my contacts.  I'm hoping I figure out the secret to using the nasal gel.  I am not concerned about the nasal mist when it arrives.  I am the Queen of Snorting these days.  SIGH.

The problem with the dry throat is that there is very, very, very little to do.  There are no medications and no over-the-counter products for dry throat ... at least not the actual throat as opposed to the back of your mouth.  The dryness is so very bad now that sleeping—and not drinking—means that I start coughing and gasping.  I'm trying to drink whenever I get up to fetch fresh ice packs.  And I am using Chloroseptic, Cepacol, and the Tesselon Pearls.

It is hard to get the throat spray far enough down my throat to work since you have to let it sit on the tissue a bit to get the numbing factor started.  I've been hanging my head backwards off the bed trying to swish the Chloroseptic around my throat without swallowing it.  It's the same with the Cepacol lozenges.  I try to suck on them at the very back of my throat without choking.  And, lately, I have been trying to let the Tesselon Pearls dissolve at the back of my throat before swallowing them.  It's a tricky thing because the numbing factor is severe with that drug.  Sometimes it interferes with my ability to swallow and I end up choking on my saliva when trying to sleep.

The coughing and gasping are so very despairing.  When I am trying to sleep, it is because the nausea or the chills or the writhing or the blood sugar or the blood pressure or some other part of me is not malfunctioning and I can actually get some sleep.  The fact that I struggle so very much to sleep ... I just sort of lose any sense of equanimity and sensibility and ... and ... hope.

It's a bit wild and a whole lot frustrating to have such a dry throat and down a few dozen ounces of water and gatorade and have your throat be just as dry when you are finished.  Currently, I am also trying the use of honey to coat my throat.  Thankfully, my friend Emily sent me some local honey as part of the most lovely Christmas package she sent.  I am not seeing a significant result yet, but I do like the taste!

On Wednesday, I see the Integrative Medicine Specialist and am most fervently hoping that she will have an idea of something to try.  I am going to ask if the two weird OTC meds I am taking can be increased.  Most particularly, I am wondering about the hyaluronic acid, since I am taking it once a day.  She also mentioned trying trace minerals, so I thought we could see if she still thought there might be a chance of that helping.

The problem is that I am taking four different eye drops in addition to the Restasis and now four different nasal meds and four different meds for the chronic constipation that the new nerve pain medication is making worse, as well as a dozen other over-the-counter medications and supplements, such as the high EPA fish oil for my beleaguered eyes.  All of that adds up something terrible and yet nothing that I am taking is expendable.  I know, for I have already eliminated what I could.  The last time I crunched the numbers, I was spending over $200 a month on over-the-counter meds just to try and keep up with my symptoms.

This dry throat thing ... well ... I give anything if there was something I could take to bring it back to a manageable state.  Anything at all.

So many people with Sjögren's end up with dentures because our teeth need saliva to remain healthy and in our mouths.  I want my teeth to stay right where they are.  That's why I am assiduous about using the Biotine even though my mouth is not miserable dry the way my sinuses, throat, and eyes are.  I wonder, sometimes, if the tissue in my throat can become damaged the way my corneas are being affected, the way gums and teeth are.  I wonder the same about my sinuses.  SIGH.

Sometimes, I want to lie on the floor, flailing my arms and legs, and scream how unfair it is to get Sjögren's on top of Dysautonomia.  Sometimes, I want someone to sit beside me and hold my hand and whisper how unfair it is to get Sjögren's on top of Dysautonomia.

I think it is easier to talk about how chronic pain is isolating, because dealing with pain on a daily basis changes you as a person and few, if any, of the people in your life can understand the battle ... and the loneliness.  But I believe that living with chronic illness and having to manage symptoms and mediations and medical appointments and insurance and bills day in and day out is just as isolating, even if you are blessed not to battle pain.  You find yourself trapped in a different world, out of step with everyone else.  As much as you want to rejoin the world in which you were living before your body began to fail, you cannot.

My sister told me, a while ago, that she thought it would be better if I stopped trying to talk about specific medications or use medical terms when I am interacting with others.  She said that she found herself tuning me out because she couldn't follow what I was saying.  "Nerve pain medication" is better than saying gabapentin, baclofen, or duloxetine.  People can understand and create a frame of reference for nerve pain medication, but they cannot for the specific medications.  What she didn't say is that she realized I was trying to be less alone with what is happening to me, but my attempts to get someone interested in my medications and symptoms and tests and treatments had the effect of ... well ... pushing folk away.  It was hard to hear her words, but I do not think she is wrong.

My dear, dear friend Rebecca Anne Bettina Matilda Boyles Kulp is trying to learn what she can, but she has a life with a husband and children and a new job.  It takes most of my days just trying to stay on top of my medical life.  How can I expect or even want someone to try and take in the massive change to my life when that person would only have bits and pieces of time here and there?  It is too much to ask ... or desire.  SIGH.

Yet I do desire that.
And I continue to try to explain.

I do not think that I will ever be able really describe what my battle with pain is like.

Or my cold spells.
Or my dry throat.

How can I get you to understand how sicca can drive a person to despair?  How can I show the misery of body and mind and spirit that festers in the deserts of my body?

"Sicca" is a word that I long for you to learn and it is a word that I wish I had never heard.

Sunday, January 21, 2018

What life has become...

Yesterday, I had four flares of Trigeminal Neuralgia.  Today, I had three.  SIGH.

Never have I had so many attacks in a single day, much less a week.  At least, never until now.  I've been enduring the brutal attacks frequently ever since I started the new nerve pain medication.  I think that this is because one of the side effects I have been battling is clenching my teeth shut.

It is the weirdest thing for me to find myself clamping my jaws together as if my life depended on it.  I work and work and work to try and relax my jaws and hold my teeth slightly apart, but when my attention wanders—and when I am asleep—I discover that my teeth are clenched tightly once more.  As a result, I have also been enduring constant headaches.  With my crap kidneys, I can no longer take the medicine that always knocks out my headaches.  And I suspect the clenching of my jaws is what is triggering the Trigeminal Neuralgia.

I saw this a while ago and loved it.  Mostly, because I still cannot quite believe that my life has become a life of pain.  I struggle with multiple types of pain.  I take four different pain meds.  I've spent part of every doctor visit for the past two years discussing pain.  I talk about it most weeks in therapy.  And my life has become incredibly isolated as I struggle to live with chronic pain.  It is hard to hide my deep despair.

To be honest, I do not believe that even my dearest friend understand just how brutal Trigeminal Neuralgia is.  Even when I say that it is known as the Suicide Illness because so many sufferers cannot bear to live with it.

  • Arthritis pain
  • Trigeminal Neuralgia
  • Pudendal Neuralgia
  • Occipital Neuralgia
  • Peripheral Neuropathy
  • Visceral Neuropathy
  • Small Fiber Neuropathy
  • Shocking in my hands
  • Migraines
  • Chronic headaches

I find it rather defeating that, I am assuming, medication for one type of pain is causing another type of pain.  Resolutely, I started the second increase in dosage on Friday, in the hopes that, eventually, the constant shocking in my hands that I have endured for 94 days now might end.  I have a month at this dose and then one more increase to get to the therapeutic dosage my GP is hoping will help.  But will increasing the dose increase the clenching and increase the Trigeminal Neuralgia flares?

Living in fear of the next attack is not living.
It's surviving.

The good news is that the emotional numbness and the I DON'T CARE side effects have eased a bit.  I no longer feel so trapped in my own body.  I think, because of that, I had more confidence in going from 60 mg to 90 mg than I did from 30 mg to 60 mg, which I did with much fear and trepidation.  But the side effects that remain are troubling.

I do not merely clench my teeth.  I sometimes find different parts of me clenched.  My hands.  My arms.  My body.  As if I am bracing for some mighty blow.  When I realize what I am doing, I force whatever part of me it is to relax.  Over and over and over again.  SIGH.

And there is the pain.
Always present.
Singular or plural.

A life of chronic pain is like trying to get comfortable on a cactus sofa.  You keep trying because you have no choice.

Thursday, January 18, 2018

The heart guy...

Today's cardiology appointment was my BEST EVER, mostly because I got the BEST NEWS that I could hear at this time from him:

My pacemaker is MRI capable!  The issue is not the pacemaker.  It is with the FDA, who stepped in to monitor devices in MRIs.  The associations for cardiologists and for radiology say the device is safe.  The central data clearinghouse medsafe says that the device is safe.  Folk with the device are getting MRIs in Europe.  Yet the FDA needs more information.  SIGH.

Still, there is a workaround.  It is a long and involved process that my cardiologist has to do that involves seeing a waiver and arranging for a programmer to be on hand and personally taking responsibility for any damage to the pacemaker.  If I decide that the MRI is necessary, he will go through the process for me.

I am absolutely, utterly relieved about that.

At my GP's visit, I learned that 60 mg was not the therapeutic dosage goal for the new nerve pain medication.  She would like to get me to 120 mg before making a decision about whether or not it will help me.  I'd need at least two months at that level.  So, on the morrow, I will be moving up to 90 mg for the next three to four weeks.  So, the plan is that, after two months at 120 mg, if I do not have adequate relief for the constant shocking in my hands—Day 91 of that particular misery now—then my cardiologist will start the process so that I can have an MRI.

Originally, she was going to do an MRI of my head and cervical spine, but I am going to ask her to go ahead and do an MRI of my entire spine and possibly my lungs, since we wouldn't want my cardiologist to have to go through his song and dance more than once.  I do fear that, after all of that, the MRI would not show any further changes in my brain, but I know that it would be needful, at that point, to rule other things out before concentrating on simply trying to calm down my blasted nerves.

That news alone would have made the visit worthwhile, but I was able to talk through several other matters.  One of the best moments—aside from my blessed pacemaker news—is that I was able to think of a way to describe the palpitations I have been having: it feels like my pacemaker is in test mode.  He knew exactly what I meant and told me that I was feeling PVCs.  That is something that he can track on my pacemaker to see if I am having more (which it feels like to me) or if I am merely noticing them more.

We talked about the daily torture I am doing, and he gave me something to try since I've abandoned the recumbent bike again.  Once the plantar fasciitis and then the tendonitis were resolved, I kept up the bike by rotating between a day of walking, a day of biking, and a day of half-and-half.  Only the biking hurts my thighs so much I finally decided a couple of weeks ago that I was going to just walk.

I also started back with using my free weights with my arms and shoulders.  In addition, I have been working on my calf muscles and trying to work on my thighs.  I tried to do lunges, but kept falling over.  I need a walker for that.  I've been doing squats, but I have worried they wouldn't count since I cannot go down very low because of my crappy knees.  I have thought about buying sleeves for them, but I am not sure the investment would been a good one for me.  And I just started back on some backwards leg lifts the physical therapist suggested I do.  [It is embarrassing to admit, but she believes that working on my backside muscles would be very, very good for me.]

Always, my cardiologist asked me to considering doing stair steps.  I was a bit ... well, I repeated for the dozenth time that stairs are hard for me.  But he was saying to use the steps of my stairs the way folk do in a gym.  Up and down on two steps, holding onto the handrail.  I thought that was a good idea to try.

At this point in the visit, my cardiologist told me that he thought I was doing a very good job taking care of myself and was clearly doing the best that I could.  Maybe not the best, but I would go with the good job.  After all, I am not a big veggie eater.

My cardiologist also said the most lovely thing today: "I don't want to do tests on you that will only come back normal, because I don't want you to think that your symptoms are not real or are unimportant."

He totally gets life with Dysautonomia!

It was following talk about the MRI (and my comment that it would probably be normal) and also about the echocardiogram he offered after my last appointment in a message to me.  It was an offer that I took a bit ... hard ... and waited to respond to until I saw him again.  The nurse wrote the email back to me, so it could have been her words or it could have been that I was upset after my last appointment.  In any case, I read it as ... if you really insist on being tested for something we can do this.

That's not what he meant.
Which I knew.
I just couldn't hear what he meant then.

My cardiologist, when I said what my plan was about the MRI, responded that it was a good plan.  That warmed the cockles of my heart.  After all, you know I sure do LOVE ME a plan.

When we were talking about the echocardiogram, he brought up the MRI plan again as being a good one and then said he felt we were on a good plan for watching out to be sure that the symptoms of Dysautonomia do not mask any symptoms of heart disease, given my concern about my family history.  I see him every three months; I talk about the symptoms I am having that worry me—such as the chest pain I get when my heart rate tops 130 or the palpitations I described this time—he listens closely and repeats back to me what I am saying to be sure he understands; and then he considers the possibly causes of what I am experiencing.  Thus far, he is confident everything is Dysautonomia-related, other than I now have a lazy heart.

However, my cardiologist said that I am the one living in my body and so if I tell him that I am just not sure about something, he is happy to follow up my concern with testing.  Then he made that most lovely and caring and compassionate of statements:

"I don't want to do tests on you that will only come back normal, because I don't want you to think that your symptoms are not real or are unimportant."

I got a bazillion "likes" when I posted it in the Neurocardiogenic Syncope (NCS) support group on Facebook.  Lots of congratulations on having such a fantastic doctor and lots of jealousy wanting the same.  I find it interesting that in the general Dysautonomia group, which is mostly Postural Orthostatic Tachycardia Syndrome (POTS) folk, there was not as much love.  I have had a lot of negative interactions with POTS folk and have noted they are more of a test-happy group.

I've read oodles of posts about having a second, third, fourth, and even fifth Tilt Table Test.  That is a very dangerous and quite awful test.  I would never go through it a second time.  But I see folk traveling from one doctor to the next, one specialty clinic to the next either wanting a cause or a cure or both.

Dysautonomia is incurable and its cause is primarily merely a good guess.  Some women get POTS after pregnancy, but why that happens is unknown since pregnancy itself is not a cause given there are a bazillion pregnancies each year and not a bazillion new POTS patients.

I do understand the desire to be better, but those of us are not going to get better.  We can have better management of our symptoms, but even then that can be tenuous at best.  I was making headway on the dryness in my throat and my sinuses, but what worked for me before is no longer effective.  And the Restasis is barely holding ground in the battle of dryness in my eyes.

Pursuing a cure will only lead to a troubled bank account and a troubled spirit.

NCSers tend to be more pragmatic about posts, asking about doctors and meds and symptoms.  And they are less strident about folk all being on the same page when issues are raised.  So, I was not surprised at all that there was an outpouring of emotion in the NCS group about my cardiologist's view about testing and just a sniff of that in the POTS group.  I am just thankful I had a place to share that loveliest of comments with folk who would understand its beauty and comfort.

But back to the visit, I will also note that I was able, whilst discussing the echocardiogram offer, to tell my cardiologist that I was triggered during my last appointment.  I told him that I didn't understand what was happening until my therapist pointed out that I had had a flashback.  It was a different sort of flashback than I had had before and didn't recognize it as such.  After she pointed that out to me and that news sank in for a few hours, I was able to see that my thoughts during my upsettedness were not based on what had happened now, but what had happened then.  I didn't tell him what triggered me or what I was thinking, but I was glad to be able to talk about that briefly.

I forgot to tell him that I should get brownie points for not sending him an upset response to the echocardiogram offer or after I was told the less than accurate news about my pacemaker not being MRI-compatable.  It is.  The FDA just hasn't recognized that fact yet.  Oh, the heartache that could have been avoided had the nurse from the pacemaker clinic just have explained that to me!

Well, I'm sure that I am forgetting something about my appointment, but you get the gist of it:  GOOD NEWS and good communicating.  This was my best cardiology appointment thus far, and it leaves me rather hopeful about future appointments.

Just how giddy was I about the pacemaker news?  I scheduled Attempt #2 at having an MRI.  I am going on Tuesday, just before my therapy appointment.  It is my hope that I go through with it so that I have a safe place to go afterwards.  SIGH.

Should I mention that I got COSTCO pizza on the way home??????????

Friday, January 12, 2018

a long day...

Today was to be another snowmageddon, but it never materialized.  Going with how I am struggling and my GP's permission to delay the mammogram, I called and canceled it.  Staying home from that was an enormous relief.

My GP appointment yesterday was rather productive, if discouraging for me.  The main thing I avoided discussing in depth was the whole problem of the chest CT showing a finding of interstitial lung disease.  In short, my GP wanted to talk with me first before consulting with the rheumatologist about treatment.  She also wrote a referral to a pulmonologist.  The soonest available appointment is in April.

The best part of the appointment, even though it made me feel like a blooming idiot was when we were discussing the dry coughing fits I am having, primarily in the morning when I am trying to sleep.  I know it is not my asthma and I am fairly certain it is not sinus drainage because my sinuses are severely dry from Sjögren's Syndrome.  I felt like a failure for not being able to manage the problem and I have been quite despairing about it.  I sort of lose it when I could be sleeping (i.e., the nausea has abated) but cannot because of the coughing.  Well, my GP pointed out that I have severe dryness in my throat and by the morning, it is most dry since I do not hydrate in my sleep.  Lightbulb.  Ohhhhhhhhh! Yes!

It is like my eyes. Because I no longer had to use hot compresses just to get through the day, I thought the dryness in my eyes was better. It is and it isn't. Learning that it isn't at my eye appointment last week was a bit devastating.  I am not feeling all that positive about having my tear ducts cauterized closed. 

Because I have been so much better at swallowing my pills, I thought the dryness in my throat was better. It is and it isn't. And, by golly, in the early morning to noonish when I'm trying to get some better sleep in, the dryness has me coughing up a storm. I was quite despairing about it when the tesselon pearls, chloroseptic, and cepacol all started to fall short and the coughing grew worse. But now that I know that my problem is dryness I can try to work the problem with that in mind.

Last night, I drank more before bed and drank a little bit every time I got out of bed to fetch fresh ice packs.  Before the integrative medicine specialist started me on n-actyl glucosamine and hyaluronic acid for the dryness, my GP has me trying carafate, dissolved into a slurry, to see if I can coat my throat.  It is the weirdest and most frustrating thing to have the driest of throats and have water quench the agony not at all.  The problem is needing your body hydrate the tissue from the inside out and having your body give up that process.

Buy, my goodness, why didn't I figure this out?????

Yesterday, I was grumpy and tired, having already done too much before seeing my most amazing doctor.  I had been to the orthodontist to have the broken retainer removed, to Best Buy to drop off my broken television for recycling, to the pharmacy, and to Walmart for groceries.  And, of course, having my hands shock me for 84 days at that point, going nuts dealing with that pain just makes everything worse.  Mostly, though, I have been felled by both my parents rejection when I asked for help with my medical expenses and the bad news about my lungs and eyes.  

I do want to think of something I can do next month to thank my doctor for being gracious about my grumpiness.  SIGH.

After the end of my 90-minute appointment, I walked outside and was shocked at how pitch dark it was.  And it was raining.  It was a bad day for my vision and, having started my journey home, became rather frightened about making it there safely.  I called my sister then Becky and then my  friend Mary trying to find someone to help me.  With six children at dinnertime, I thought it was a bit selfish of me to ask her for help, but I did.  But she, in a beautiful act of mercy, did help, staying with me on the phone as I drove through the rain, struggling to see the street signs and battling fear the entire way.

It was a long and trying day.  But I had the problem with my broken retainer resolved, I no longer have a television riding around in the back of my Highlander, I have milk milk enough to last through any snow in the next two weeks, I am ready to fill my two-week medication holders on Sunday, and I was blessed both by the care of my doctor and my very dear friend.  So, I am working on viewing it as a good day.

Is it even possible for any day you stock up on milk to be a truly bad day??