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.