Sunday, July 15, 2018

Side effects, birthday boxes, and frozen food...

As I mentioned before, research has shown off-label use of an SNRI in combination with lyrica or gabapentin  has helped with neuropathy more than just lyrica or gabapentin alone.  I tried taking duloxetine in December and gave up after two months, because going up in dosage was a mitigated disaster of side effects for me.  However, seeing how the pilocarpine has produced saliva for me at sub-dosage levels got me to thinking that my sensitivity to drugs might mean that a sub-dosage level of an SNRI might help my neuropathy.  So, I asked my GP to try duloxetine again.

She wanted me to try the other SNRI, effexor, first, so I did.  Two days was all I could bear at an even lower dose than the initial dose of duloxetine.  It was brutal.  So, last Monday, I started the lowest dose of duloxetine again, with the goal of trying to stay on just it for 2-3 months to see if there is any gains in the constant shocking in my hands.

It has been a long, long week.

Primarily, I have done a prodigious amount of napping.  Three days, I think I was asleep more than I was awake.  I have been napping heavily in the evenings for more than a year now, with the added exhaustion of Sjögren's on top of the fatigue of Dysautonomia.  I am weary of being weary.  Yesterday, I only had one nap and today none, but that was because I was laboring and my sister's phone call kept me on task instead of curled up on the sofa!

I have had headaches again and an increase in Trigeminal Neuralgia flares.  It is the latter that is truly discouraging, but I can say there have been less in the past two days than there were in the first two days, so perhaps there is hope.  I am not certain I can live with more of those brutal pain flares just to take this medication.

The IDON'TCARE is back.  And, to be honest, I am welcoming of it.  The numbness or distance or however best to put it is a welcome abject relief from all the things that have been weighing on my being.  I am still overwhelmed with the thought of all that I am facing, but just not also with the emotion of it.

The other neurological issue is the dystonia and tremors.  I learned that they are called extrapyramidal side effects and that one way to treat them, providing that you wish to stay on a drug that can cause permanent neurological side effects, is the use of benedryl.  I have not tried it yet, but I am thinking hard about it.  It is just that benedryl makes me so darned drowsy and I do not need another drug causing that side effect.

I am trying to deal with the dystonia (muscle clenching/continuous spasms) by mind-over-matter.  The jury is out over whether or not I am gaining ground.  I am at least aware of the problem much of the time and am actively working at relaxing.

Sadly, I am also back to sleeping in 90-120 minute increments during the night.  My sleep has been very light, but I think that is a step up from insomnia.  How you can be drowsy and have insomnia at the same time is a mystery to me.  In any case, I wake up, fetch fresh ice packs, read a tiny bit, crash, rinse and repeat.  I do that until I think that I can get up and stay up ... at least until my first nap.

I know the first two weeks are the worst, so I am working hard not to really think about how I am just now.  Instead, I have been moving from one day to the next, still in shock over my fourth cavity and all the other ways Sjögren's is attacking my body, and caught up in the battle that is trying a new medication.

However, I had an almost impossible goal today:  two birthday boxes.

Two birthday boxes means making two Lemon Greek Yogurt Pound Cakes.  Plus cookies.  And wrapping things up.  Plus taping up the boxes.  Plus writing out labels.  I am glad to report that the first task was accomplished.  Don't you think that I did a stellar job on the glaze this time??  

My last glazing was such an abject failure that I worked to improve my process.  Not once, but twice I was able to not over mix the glaze and to apply it in a more aesthetically pleasing manner.  Frankly, I wish that I was eating this!

My sister had a most brilliant idea:  Only mail half the pound cake and keep the other half to celebrate the birthday!

I must say, I was sure tempted to try out her idea.  Instead, though, I wrapped up both of them whole and (hopefully) safely packaged them up for the birthday boxes.  I have to try and get to the post office tomorrow morning, since I have a delivery window in the afternoon for the replacement of the replacement refrigerator.

Yes, the Maytag one has finally arrived.

Here's hoping to no more frozen food on the morrow.  And birthday boxes off in the mail.

Saturday, July 14, 2018

A warning...

A year ago, I seriously injured my back by digging holes to plant the azaleas.  It took about a month to heal.  Yesterday, I felt the same searing pain start as I leaned forward.  I wasn't straining. I wasn't even bending. I was just leaning forward!

I immediately froze and then slowly straightened up.  For a moment, I was transported back to being stuck in the back yard, wondering how I was going to get myself back inside.  However, I was able to walk and immediately took myself upstairs to take some Toradol.  I thought the powerful NSAID I used with my migraines might help, but it ultimately did not.  I then made my way downstairs and promptly put an ice pack against the back of my pelvis.

I don't know what a pinched nerve feels like, but I do know what neuropathy does.  This pain is searing ... almost tearing ... and nothing electrical or burning or pulsing like neuropathy.  So, I decided it must be muscular somehow.

When I lived in Alexandria, for a while there I kept getting neck pains that I learned were actually spasms in my back.  My doctor there, when I once came in just as one was happening, treated me with some sort of ice spray, which stopped the spasm right away and then had me work on using heat to relax the muscle against the pain I was still feeling.  Hence, the ice pack.

I iced my back for hours and hours and then I switched to heat for hours and hours.  And I broke down and took some ibuprofen, even though I know that my beleaguered kidneys do not respond well that that most beloved of pain drugs to me.  I took two high doses, back to back, and then stopped.  So, perhaps doing so was not too much of a danger.

You see, the thing is that I have been in shock, for a week now, struggling with a mixture of disbelief and despair about my teeth.  How in the bloody world could I have another cavity just four months after discovering that I had three?  As my mother continues to point out, I've always had the best teeth in the family.  And it was really, really, really difficult listening to the dentist telling me what fantastic shape I was keeping my teeth in—how pleased she was with my home dental care—and yet make plans to fill my tooth then and there.

So, this whole searing back pain for no reason at all has me also in shock.  I keep thinking I cannot have a bad back on top of everything else! 

I've been working on my abdominal muscles, doing the two exercises the physical therapist I saw last year directed, as well as two exercises to work on my backside, since your back is supported by your abdominal and backside muscles.  As a result, I have noticed that it is easier for me to sit up in bed.  I guess you could say that I was feeling a bit better about my back.

Not so much anymore.

I didn't walk yesterday, because I could feel the pain in my back every step I took, though not whilst on the stairs.  However, I cautiously got on the treadmill today and was able to walk.  I did skip the abdominal exercises, just to be safe.

I think that stopping the movement that was hurting me immediately and getting ice on it immediately helped to stop whatever was happening with the upper left side of my pelvis in my lower back.  And the ibuprofen.  Or probably that I am starting my second week of high dose steroids.  Or maybe it is all of that.  Or none.

In any case, I spent most of yesterday and all of today holding my proverbial breath against another injury to my back.  I am giving thanks that it was, I suppose, just a tweak.

A warning, it seems to me, though of what I am not certain.

Thursday, July 12, 2018

This day...

Oh, my goodness!

I've had four two-hour naps today and am struggling to stay awake at the moment.  I've got 41 minutes until my last meds of the day and I am trying to hang on for that.

It is as if I have taken too much baclofen or something, but I haven't.  Something is off.  Or not.  Well, I do feel more drugged than exhausted.  Only I don't feel dizzy-drugged.  Just drugged.  So sleepy that I just cannot stay awake.

It is a good thing that Amos likes naps!

A part of me wonders if it is because of this day.
This day that is so very hard for me.
And terribly lonely.

Seven years ago was the most violent experience I have ever had.  It tore away pieces of Amos and I that both of us have never gotten back.  I doubt we ever will.

I have flashes of the pit bull attack that bring up such horror that I dare not touch them.  It was such a ferocious battle between he and I over Amos.  Being dragged to the ground again and again and again, knowing that each time I got up brought me closer and closer to the last time I would be getting up.

Violent is not really a sufficient word to describe what happened.  Neither is brutal.  They are too hollow, too empty of what I experienced then and oft experience now.

Life has never been the same.
It won't be the same.
And I feel so alone with this.

Wednesday, July 11, 2018


Tuesday, I was slotted in to see the dentist and ended up with a filling for the cavity.  I still cannot believe that I have a fourth cavity.  I am absolutely overwhelmed at the way Sjögren's is attacking my body ... and the cost.  Yes, I started a dental savings account, but I've only had four months to start saving for more dental work.  Just four months!


I really have spent much of the time since I laid eyes upon that tiny black hole in my tooth in shock.  It has been a strange few days for me, isolating and devastating.  When I could, I threw myself into some labor in the yard.  Sunday and Monday, I tackled weeding all of my beds and watering by hand the bushes, ornamental trees, raised beds, pots, and baskets out in my haven and on all three porches, as well as cleaning and re-filling the four birdbaths and two fountains.  Tonight, I pruned the forsythia, the last of the major yard tasks for spring/summer.

Labor requires napping.  Lots and lots of napping.  Labor also requires not thinking.  By that I mean, labor, for me, is hours and hours of slow work in which I am alone, alone with my person and alone with my thoughts.

Sometimes, I can manage not to think.  To just be whilst laboring.  This is most easy when I am puttering in soil.  It is then that I can mostly meditate on the good gift of creation, one that continually awes me.  It is in this way that I think I have learned, in brief moments, to be still and know that I am God.  But when my mind cannot be still, when thoughts of what my life has become crowd too closely, I pray.

Sealing the fencing in the haven was not mere hours of work, but days.  During the first day, I prayed through the ins and outs of the lives of family and friends.   I did the same the second day, but I also included all of my doctors.  It was the third day that I began to listen to the sounds of my neighbors.

Amos is most particularly terrified by the sounds of the neighborhood, including my neighbors and the nature therein.  He is most at peace when we are out in the dead of night, where silence and stillness reigns.  I admit that I am most at peace when out in my haven, where the fencing also separates me from the hustle and bustle of the world around me.  I want the quiet of my space where the sounds I hear are the flow of water in the fountain and the tinkling of the wind chimes.  Well, those and whatever show or movie I might be streaming.

Before, when I listened to the neighborhood, I really only heard the cacophony, unless it was the arguing of my neighbors on both sides.  I was listening as a whole, to the collective of the neighborhood.  As I was moving the brush back and forth, back and forth, I started listening to the individual sounds of my neighbors.

Something that has saddened me is that most of the child's play I hear around me is centered on violence and death.  They mostly play at killing each other.  It is a sorrow of mine.  However, thanks to the rather loud talking of my neighbor, I learned that the pitiful musical noises coming from next door is the high school graduate giving music lessons.

I learned that a neighbor has a new baby.
I learned that a neighbor has started a new job.
I learned that a neighbor has a newly broken leg.
I learned that a neighbor has a new marriage.

Thinking about them as individuals is not really my strong suit, especially this time of year.  They are all just the NUTTERS around me who inside on using fireworks for every possible second of the fireworks-using period in this area.  Well, every possible second of the legal period and then some.

I started praying for them as individuals.  And, for the first time, I ask God to change to my heart about my neighbors on either side.  I cannot change their hurtful behavior, but I can change my attitude about them.

But it wasn't really praying about me, because I don't do that.  It was about praying for that baby, for getting the soothing that he/she needs ... and the love and the wisdom and the patience and the physical care and instruction in the catechism.

I prayed for the new job and all the ways he was going to be interacting with others, including those whom he would be serving or comforting.  I prayed for patience and wisdom and discernment.

I prayed for the marriage and the injury.  And I moved on to the others sounds I heard, such as construction and gardening and relationships.  I listened to the life around me and lifted it up to the Lord.

This listening ... I've continued.  Listening and praying.

Perhaps it is eavesdropping at medical offices.  At the dentist office, I heard a new mother despairing of her fatigue, so I prayed for her, the baby, and her family.  After all, I know a thing or two about fatigue.  I also prayed for an elderly gentlemen despairing of losing his teeth.  I clearly know about that!

It is weird, for me, to spend so much time listening and praying.  I mean, coming from the Bible Belt, praying is par for the course.  But I haven't ever been an ... interventional ... prayer like this.  Such a strange way to flee from my mind and my body, eh?

Sunday, July 08, 2018

Something done...

Amos is my shadow, inside or out.  I don't blame him.  I want him with me as much as he wants to be with me.  But, when in the Great Outdoors, his preference is to be atop my shoulders, protecting him from all the fearsome things about.  However, it is most difficult to weed and to water with a Fluffernutter on my shoulders.

His most favorite place in the yard, now, is the haven.  And, in the haven, he adores surveying the world from atop the bench.  Even if all he is surveying is his sweaty, shaky puppy momma.

I have been really struggling with spotting the spot on my tooth ... not just the spot.  It is everything that has gone to pot on my body since being diagnosed with Sjögren's.

Crap eyes.
Crap kidneys.
Crap lungs.
Crap joints.
Crap teeth.

It's the failings of my body.
It's the constant strain of trying to figure out how to pay for meds.
It's the struggle to take meds all the day long.
It's the enduring of even more illness in side effects in the oft futile hopes for help.
It's the illness.
It's the never-ending exhaustion.
It's the loneliness.
It's the isolation.
It's the uncertainty.
It's everything.
And nothing.

So, I strove to get some things done in the yard today.  I weeded all of my beds, though most were nearly clear.  I had some more of the baby Rose of Sharons to pluck and I had the whole shade bed on the far side of the house to weed, just a few inches away from a bed that is nearly all weeds.  Thankfully, most of the weeds were ones that I could pull rather than dig.

When I finished, I napped for a couple of hours.  Most days, I nap twice, between 2-3 hours each time.  If I try to stay awake, I oft fall asleep sitting up!

After my nap, I watered and watered and watered.  Every summer, we have a mini-drought, which has clearly started.  The raised beds, the bushes, the ornamental trees, the pots, the baskets.  And I tended to the bird baths and the fountains.  Water, water everywhere.

It was good to get something done, to be outside of my body for a while.

Saturday, July 07, 2018

Another blow...

I know I am not a dentist, but I am 99.99% confident in my diagnosis.  SIGH.

Friday morning, I awoke to a call from my new neurologist. This is the second time that she's called me and the second time that she has called me to break the news that I will not be getting an MRI.  The other hospital in town also refused to do the MRI.  Without the imaging, she stated that we need to do a lumbar puncture (spinal tap).  I am not looking forward to that.

I did think to see exactly when my dear friend Becky and her brood will be in town (just two weeks from now), so I called to see if I could get it scheduled during her visit.  I doubt the stars will align for that, but I am going to beg come Monday, since the scheduler never called me back.

So, already Friday was a rather distressing day for me.  But when I went to brush my teeth—floss actually—it got worse.  I noticed a black speck on the top of one of my molars.  At first, I thought that I had missed something when I was brushing my teeth.  So, out came my electric toothbrush and I went over the tooth several times.  But the speck remained.  Then, I tried using my dental pick, thinking that perhaps it was some bit of pepper that was just plastered down hard.  Alas, know, it was a small hole actually.

Google tells me that I have a fourth cavity.
I agree.

The saliva-producing medicine has made me quite ill, so I have had to increase the dosage by 1/4 of a pill every two weeks.  After the first week of June, I finally got to two whole pills, a half dose.  I decided to take a break, in part because of the side effects and in part because I have gotten such strong pushback about trying to take the medication, basically questioning if I even needed to take it.

A fourth cavity.
Just four months after my x-rays, exam, and three other fillings.

Even though I have bewailed my despair on Facebook and tried to text with a friend about it, I really haven't gotten too close to the thought of what this means.  By that I mean, I think I would tip the scales towards leaving this world if I were to go there.

It isn't just the thought of dentures, it is the expense.  They would be out of my range if I wanted to not drain my meager retirement.  Actually, it is not just the dentures.  It is the extractions.  And it is not just the extractions.  It is the root canals.  And it is not just the root canals.  It is the crowns.  And it is not just the crowns.  It is the fillings.  By all accounts, I very well could be at the event horizon of a financial black hole visited by so very many folk with Sjögren's.

A financial black hole.
An emotional black hole.
A physical black hole.

I admit that I am not always diligent about brushing four times a day, flossing twice a day, and using the fluoride rinse twice a day.  That is my new routine.  I am also not all that diligent about putting drops in my eyes every hour or tending to my sinuses with various products every two hours or putting the topical NSAID gel on my shoulder ever four hours.  For that matter, as much as I strive to take my meds at 5:00, 6:00, 7:00, noon, 4:00, 6:00, 7:00, and midnight, I have not excelled at doing so.  Not lately.

I've let my visual rest go.
I've let my personal care go.
I've let my butter passion go.
I've let my cooking journey go.

This whole MRI thing and new shoulder arthritis thing and lung function thing has had me in a real funk, but that black speck has tripped me down a hole that is seemingly impossible from which to climb out.

I am weary and alone and medically hopeless.
With crap teeth.

Thursday, July 05, 2018

No change...

I had such disappointing news today.  I posted about on Facebook and was surprised that no one responded with consolation.  After all, despite two months of treatment, there has been absolutely no improvement in my lung function.  My function has held steady, which is something, but no improvement.  My ability to draw a breath remains at only 50% of what it should be.

I hadn't known the percentage of my dysfunction until today.  I am not sure why not or why she chose to tell me.  I am not sure why I didn't ask more questions the other times I have seen my pulmonologist.  Perhaps it is because this is just so very overwhelming.  After all, breathing is such a primal need.

All those "thumbs up" responses.
Not a single sad face.
No consolation.

It doesn't matter that my therapist tells me that most folk don't know what to say to those who are ill and/or suffering.  I still feels so absolutely and utterly alone.

It seemed to be a cosmic sucker punch when my tire low pressure warning system came on whilst I was driving out to the hospital.  I had my oil changed, a service inspection completed, and my tires rotated just yesterday.  There I sat, back in Goodyear, wanting to cry and to cut and to hold my beloved Fluffernutter.  Instead, I was waiting for a mistake to be corrected.

Instead of losing it, I very quietly asked to speak to the manager and requested that the serviceman who worked on my car have a bit of re-training.  Not checking the tire pressure after rotating the tires is a pretty basic fail.  I adore the men who work at that Goodyear and am grateful for all that they have done for me over the years.  I was annoyed at having to both drive all the way out to the shop again and sit again in one of their hard plastic chairs.

Besides, it is hard to be devastated in public.  I just wanted to go home.

I have been rather ill with the new medication.  I have been sitting here for a few hours tonight, wondering why I am trying to so hard to find a medication to help my hands.  It seems as if I am the only one that wants the shocks to cease.  SIGH.

What a crap day.
No change.