Wednesday, July 18, 2018

A first harvest...

Today is the day that I would have stepped up another 1/4 dose on the saliva drug (pilocarpine).  But it is a day that has had me battling exhaustion the entire day.  I was able to get up and take Amos outside, but soon thereafter, I found myself struggling to stay awake again.  So, I napped.

It wasn't until after 5:00 PM that I could manage to get up and try to move some.  I fed Amos and then forced myself to go down to the treadmill.  I wanted to then go nap some more, once I cooled down, but I had harvested my first eggplant before walking so that I would then be forced to cook some dinner.

I Googled when to harvest and learned that you don't want them to get ripe, because ripe eggplant is inedible.  I also read that smaller ones are rather tasty.  Since I am the only one here, I thought this one-serving sized eggplant would be a good trial harvest.

I dipped the slices in milk and egg and then in seasoned flour and sautéed them in olive oil.  I used some of my homemade ranch dressing as a dipping sauce.  The Internet was right.  Young eggplant is divine.  It practically melted in my mouth.  I look forward to eating the other nine eggplants that are growing at the moment!

The dishes washed, I collapsed on the sofa again.  I wonder if the predinsone is a factor in my exhaustion or if it is merely a combination of having both Dysautonomia and Sjögren's.  I want to say that the two medications have something to do with my excessive napping, but I do not feel drowsy all the time.  By that I mean, if I nap, then I awake a bit refreshed and am able to get up and do things much of the time, for a little bit, before needing to nap again.

But then there are days like today where I am so very bone deep exhausted that nothing helps but lying down.  Heck, I am so very weary that reading and streaming is too much effort!

The thing is ... Becky and her entire family will be here in just three days!  I haven't cleaned, not that they expect much.  Nor have I fetched groceries.  I worked out meal options with Becky and spent the whole day trying to work on a shopping list.  No, not a single item has been written down yet.  SIGH.

I cannot wait to see them.  I haven't seen her children in years, and I haven't seen her beloved since I moved.  I like Gary.  He's witty and kind and really, really intelligent.  I have missed visiting with him.

I sure hope I can stay awake for their visit!

Tuesday, July 17, 2018

Mind over matter...

I definitely think that the side effects of the duloxetine are easing a bit, but just a bit.  I am so very exhausted and also drowsy, so it is difficult to be awake and present.  Last night, in the shower, I swear I almost fell asleep twice.  Or something akin to sleeping whilst standing up.  Twice I found myself shaking myself back to the fact that I was standing beneath water and was supposed to be doing something.  What I was supposed to be doing took a few moments to come to mind, despite my location and the running water.

Yesterday was the refrigerator exchange.
It, too, was exhausting.

I am terribly disappointed to realize that I somehow missed that in switching to a Maytag, I lost 2 cubic feet of space.  I dearly miss that space!

The work of taking everything out of the broken refrigerator and putting it into the new refrigerator was made all the more difficult in realizing I do not have enough space for the way I had been doing my icepacks and the other freezer items.  Right now, things are not very organized on either side, and I wish them to be each and every time I open the doors, but I am weary.

Today, I dropped off cucumbers at my GP and therapist's offices and gave a bag to my realtor.  In all, I gave away 18 cucumbers and still have six in my refrigerator!  It was so terribly hard digging out the honeysuckle, but getting rid of the source of powdery mildew in the yard has made cucumber-growing finally a success.  Plus, the crabapple was being affected.  I wonder if I could grow summer squash now....

On the way back, I fetched a prescription from the drive-thru pharmacy.  I brought Amos with me because we both are more attached at the hip than ever.  Plus, I get lonely on errands.  He has gotten really good about not arguing with me when I tell him that he has to stay in the car.  Even though it is hot, I was only gone a few minutes at each stop, just long enough to drop off the cucumbers and come back out.  When we got to the pharmacy, Amos started hanging outside the window and barking at the screen.  I quickly told him to hush, but I soon realized the why behind his agitation.  Amos remembered that he gets a doggie treat in the pharmacy bag when we go there!  This is just his third time of being with me there, so I find that a bit remarkable.  Of course, it is food.  He has a mind like a steel trap when it comes to sources of food!

I am proud of how Amos has improved his car behavior.  Going to therapy with me has helped me teach him better manners.  He is a very smart little Fluffernutter.  I want to try and train him some more, especially try to train him on the leash.

Of course, he is also a very stubborn puppy dog.
And I am a weary puppy momma.

I could note one more gain that I hope is not a one-off.  Whenever Amos is in the basement, he will not tell me that he has to poop.  He will just poop.  Upstairs, he will ask to go outside.  But downstairs all bets are off.  Usually, this happens when I haven't been paying attention to his bodily needs and he's been waiting for me to get off the treadmill.  He gets up and poops ... and then disappears because he knows he's done wrong!

If I try to get him to stop, mostly by yelling, he just continues.  However, yesterday, he stopped long enough to have me follow him up the stairs and let him outside.  Even having to pause a bit in the kitchen was okay as far as the proper dispensation of his bodily waste.  I really do hope we turned a corner on that one.

Mostly, I blame myself.  The majority of the time Amos poops inside is because I haven't had him go outside ... I haven't been keeping track of the fact that he needs to go outside.  The only other time is the "fear poop" when servicemen or visitors have arrived.  The latter I doubt I will ever be able to do anything about, because it happens even when I have him take care of business right before folk arrive.  But the former is clearly on my shoulders.  Yes, I want him to ask me to go outside with him, but I know that after both meals needs are pressing.  If, in the morning, I let him avoid his fears and come back inside without doing his business, it is incumbent upon me to remember to have him conduct his affairs once we get up for the day.  I do not always do that.

Anyway, we had a great celebration of Amos being able to hold his bowels until reaching the Great Outdoors yesterday.  Yes, I was proud of him!  Yes, I told him dozens of times!!  It was a genuine triumph of mind over matter!!!


I guess you could say that is my battle of late:  Mind over matter.  Will I be able to bully my body its way through the side effects mind field I am traversing?  Right now, this very minute, it is mind over matter vs muscle spasms, neuralgia flares, and headaches.

Time for another nap....

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.

Wednesday, July 04, 2018

Hand me the shame...

I confess that I dismiss the shame of Christ on the cross.  I very much dislike it when I try to speak of my shame and I am handed the shame of Christ on the cross as a panacea for my own.  Christ was naked (not that most Christian artwork shows this), yes.  I understand that for Him, that for a man at that time, public nakedness brought shame.  But hanging naked on cross is not the same shame as being raped or having parts of your body played with by an adult who knew well what he was doing when, as a child, you did not comprehend what was happening.  As a child.  As an adult, you know well what is happening in those flashbacks and some part of that shame fills the flashbacks with a greater horror.

Don't get me wrong.  Christ Himself is the answer for shame.  Christ is the answer for the whole world.  His being naked on the cross, however, isn't the answer.  It just isn't the same.

Something I also very much dislike is the comparing of suffering.  You could say that I am doing that here, but I am not.  Suffering is suffering.  Suffering is such a personal and idiosyncratic experience.  What is horrifying to me might not be to you and vice versa.  But we each have our own horrors of the mind.  That is suffering.  And what miseries of the body fell me might be mere annoyances to you and vice versa.  But we each have our own miseries of the body.  That is suffering.

Besides, comparison of suffering moves one away from what is needed:  compassion, empathy, presence.

But still I compare shame.  And, for me, to hand me the shame of Christ on the cross when I try to speak of my shame is to hand me dismissal, disconnection, loneliness.  And, honestly, it is also to add to my shame in a sense of failure.  Failure to communicate, perhaps.  Failure of faith for certain.

Sometimes, it seems to me that answers that I am given, even as a Lutheran are really thinly veiled "let go and let God."  That is not ... biblical to me.  At least I've never found that verse.

Unless just a little while ago, every single time I had a pudendal neuralgia flare, I was not lying on my bathroom floor or in my bed, but rather I was trapped beneath the body of a man, writhing and even screaming, now, as an adult, as an object was shoved up by backside.  That is the sensation one can have with a pudendal neuralgia flare: as if something is being inserted into your rectum.  Even without a history of sexual abuse, it can be a terrible experience.  But for one who was abused in that manner, it is the trigger of all triggers, melding the pain of the present with the pain of the past in a wretchedly warped manner.

Now, understanding has helped change how I respond to what I am feeling.  I do, admittedly, fall back into the flashbacks, but most often I am able to gather the reigns of my mind and drive them to the knowledge that is most important.  I close my eyes and picture a diagram of the pudendal nerves in the human body.  I follow the branches of those nerves on the left side down to where the branch affects the rectum and I force my mind to focus on a true medical fact:  What is happening to my body, what I am feeling, is a malfunction of my pudendal nerve, following down from along my spine, though my pelvis, and branching throughout my pelvic region; it is not what happened in the past.

The power that is most effective against flashbacks is the ability to remain in the present so that you can concentrate on what is actually happening rather than what has happened before.  The ground I have gained in the battle of enduring pudendal neuralgia flares hasn't come because I let go and let God.  No, that gain came through medical knowledge I have gathered about my pudendal nerve allows me to remain in the present.  Now, that present stinks and I oft want to die as much as I do when I am lost in a flashback, but I savor the victory of remaining present.

But even as I do the shame of those flashbacks comes creeping back, just as it is beginning to flood my mind as I write this.  The dirty, secret actions in that place where my body was violated and, sometimes, would violate itself with responses too overwhelmingly laced with shame that even to dare touch the thought is to flirt with a desire the die that is just as strong as the shame.

Sexual abuse shame is a shame that is complex, I believe.  There is the shame of the body and the shame of the mind and the shame of betrayal and the shame of behavior and the shame of society.  I could try to explain what I mean by each of them, but I would be falling down my own rabbit hole and tonight is not the time or place to do so.

I just wanted to admit that, after a fashion, I dismiss the shame of Christ on the cross.  Instead of that, when I speak of my shame, perhaps, hand me the shame of the prodigal son.  You might not understand, but a part of me feels responsible.  Hand me the shame of Christ on the cross and you are handing me an example of nakedness that does not match my own and only serves to make me feel more wretched for having spoken.   Hand me the shame of the prodigal son and you are essentially handing me the hope of forgiveness.

Tuesday, July 03, 2018

The trauma response...

The trauma response in our brain is to either fight, flight, or freeze.  For me, my life has been defined by and bound by the latter:  Shut up.  Be still. Wait until it is over.  I snap into that ... easily.  Too easily.

It is not a response that some predators like.  Or, rather, I think that I should say that my disassociation that accompanies the trauma response is not what they want.  I wonder what I look like.  However I do, it used to enrage my last boss when she was filleting me for this, that, and the other.

Instead of leaving (and suing), I shut up, was still, and waited until it was over.  Even though I was an adult and had learned some things about abuse.  The same is with others ... those who abused my body.  At 44, I was still unable to do anything but shut up, be still, and wait until it is over. 

I know that that what I learned at a young age.  I know that it is a normal trauma response.  I know that my brain is wired differently.  And yet I feel immense guilt and shame for my response, for what seems to me to be ... participation in the abuse of my body, in the sex (even though I know it should be called rape).

How could Jesus forgive a life of that?

The past three therapy sessions, we have used the article that I shared here about Complex PTSD as a framework, a tool that is perfect for me.  The past two sessions have been about how I struggle to trust God.  I am not sure I do much at all.  That grieves me.  And it terrifies me.

I have been trying to figure what it is that I believe.

As I have written before, I believe in the power of prayer.  I believe that God desires us to pray.  I believe that God yearns for us to pour out our hearts to Him.  I believe that prayer comforts.  I believe that prayer heals.  I believe that it matters not so much what we say, because the Holy Spirit takes us to Jesus and Jesus takes us to the Father.  The Holy Spirit understands our groanings and speaks them.  We need not worry about our words when the very Living Word of God brings our cries to the Father, who collects our tears.

To me, the beauty ... the awe really ... of the Psalter is that it shows so clearly that we, as human beings, are known to our Creator.  He understands our doubts and fears and joys and exultations and wonders and yearnings and questions.  They are all there.  In the collections of prayers He gave to us.

Which brings me to the other certainty I have:  I believe in the efficacy of the Word of God.  It is powerful, performative, and perfect.  Hearing it changes you.  The Word of God sustains and heals and feeds and encourages.  Having it in your mouth and on your lips, in your ears, and in your eyes is what God desires for us because the Word of God is and has done all that God is and has done.  It will not return void.

I could write forever about the Word of God, about the wonder of it and its perfection.  The latter is why I love (and have been so very blessed by) Michael Card's commentaries on the gospels.  He, too, believes in the perfection of the Word of God (and the Living Word).  They are an amazing celebration of Jesus ... not a exploration of how Christians should live.

Good stuff there.

I'd rather hide in the Psalter and in those commentaries than think about the fact that I struggle with trusting God.  What does that mean for me?

It is a tad challenging when my therapist talks about faith, and the Bible, and theology.  She believes in God, but I think she is lapsed in whatever denomination she might be.  I suspect it was either Catholic or Lutheran.  In any case, she made a suggestion for something for me to consider:

If God is our Creator, then He created that trauma response in our brains to preserve us.  So, therefore, there would be no shame in freezing, no shame and no guilt.  Certainly Jesus would have forgiveness for that response ... again and again and again.

I spent the week thinking about what she said, wondering if her thought could become my thought.  I have yearned to speak to a pastor about her thought, to work through what that could mean for me.

We talked more about it today, along with trust in general.

1. Deep Fear Of Trust
People who endure ongoing abuse, particularly from significant people in their lives, develop an intense and understandable fear of trusting people. If the abuse was parents or caregivers, this intensifies. Ongoing trauma wires the brain for fear and distrust. It becomes the way the brain copes with any further potential abuse. Complex trauma survivors often find trusting people very difficult, and it takes little for any trust built to be destroyed. The brain senses issues and this overwhelms the already severely-traumatized brain. This fear of trust is extremely impactful on a survivor’s life. Trust can be learned with support and an understanding of trusting people slowly and carefully.

After setting aside her idea about the trauma response, we talked briefly about how she would like for me to come up with three ways that I view trust in others.  What a tough assignment!  I could think of one:

Don't tell me that you will call or visit or write and then do not.  If your plans change, call me or send a text.  I understand that.  But if you blow me off—for that is how I feel about it—then I cannot help but think that I matter not to you.

I am not sure what she means, but when I think about trust, that came to mind first as an example when the trust I built is threatened or even destroyed.  "The brain senses issues and this overwhelms the already severely-traumatized brain."  Oh, man! Is that ever a sentence I understand. SIGH.

Monday, July 02, 2018

Like every other day...

The fireworks have been blasting for over a week now, here in Fort Wayne.  And we are still two days away from the 4th.  Not that the holiday will end the madness.  For me, it is that.  Madness.

Both Amos and I do not do well with fireworks.  Each of us are felled by our PTSD, made insensible by the trigger.  It is a comfort knowing that we are not the only ones felled by PTSD at this time of year, albeit a small one.

When I am on the phone or with someone, it is easier to shove the fear below the surface.  But when it is just Amos and I, each pop, rattle, and BOOM makes me jump and long to crawl into the recesses of my closet.  I just don't understand why my neighbors like having such deafening and overwhelming and frightful noises in their backyards.  But, boy oh boy do they ever like them.  SIGH.

The first of the year is also difficult for the same reason.

It is hard for me to this of this as a holiday.  I mean, holiday have little meaning for me since I am home all the time, home and not working.  Home and alone.  But the celebrations drive me to despair as the fireworks start even as dusk is still falling until after midnight.  Hours and hours of torture for me.

One of the questions I dread are about holidays.  What are you doing for ____________?  I don't have an answer because I am usually not going anything any different from any other day.  I don't have special plans for meals.  I don't have plans to go out.  I don't have visitors coming.  The day of the holiday will be like every other day of my life.

Unless it is one with fireworks, where the flashes of light bring unwanted flashes of memory to my mind ... and body.


Saturday, June 30, 2018


The heat index today was 110 degrees!  This is our third heat wave in a month and summer only officially began last week.  This is my eighth summer in Fort Wayne and the first one that has been so incredibly hot.  We've been under a heat warning and air quality warning since yesterday noon and it will be stinkin' hot tomorrow, too.  If the forecast holds well, we will have two days of respite and then another heat wave.  It has been difficult to endure the heat, which is both debilitating and exacerbates my symptoms.

What is worse is how many folk tell me that I'll get used to the heat.  It isn't about acclimating.  It is about a malfunction in my body having a reaction to the heat that makes me ill.  No amount of acclimation or "exposure therapy" is going to make that better.  In fact, it will just make me worse.

Likewise, when folk tell me that I can just have my house warmer if I wanted.  I have had the thermostat set to 68 degrees in the summer for years, but I did move it to 70 degrees.  To me, that is a huge concession for those visitors who are cold.  To me, two degrees is like 10.  But, to be honest, I am trying to endure 70 degrees all the time to save money.  No matter how much I crunch the numbers, I simply do not have enough money for all my expenses.

I did spend hours and hours going over my non-fixed medical expenses from January to June to attempt to come up with a fixed number monthly.  What I need is more than my funds will allow.  So, I earmarked $250, the most I could reasonably carve out.  Before now, I had been paying my medical expenses in a slapdash fashion ... or maybe as a neglected step-child fashion.  But starting with June, since I could rework the month, my medical expenses will be a first-pay as opposed to a random-hoping-money-will-appear fashion.  Of course that means I only have $225 left.  With $125 earmarked for groceries and household items, such as paper towels, that leaves me a mere $100 to pay for everything else.  One tank of gas and the month becomes rather dire in the financial department.  SIGH.

As far as the $250 goes, if I do not spend all of it on medical, then I will sweep the leftovers into the medical savings account.  Likewise, if I spent over $250, then I will pay myself back out of the savings account.

I hope I can keep up this way, because I really do not need to be putting off my medial expenses.  I need to be planning for them from the get go.  I am sick after all.  And I need to find a way to live (and be ill) on the amount I receive.  After all, the financial situation I find myself in is not going to change.

My financial situation is near impossible, as is living with the heat.  I am failing at both and see little help in either department.  SIGH.

Friday, June 29, 2018

Warm your cockles...

I could hardly imagine you haven't at least heard about it, but I hope that, by now, you've watched Paul McCartney's Carpool Karaoke with James Corden.  I've never been good at embedding things, so I hope this works for you.  Watch it.  Even if you don't care for his music all that much.  Or him.

It will warm the cockles of your heart and teach you a few things.

I cannot say that I have heard any of Paul's music, though I, of course, know his work with the Beatles.  So, I was not particularly interested in watching this, only I heard the hype.  I thought, why not?

I've since watched it five more times.  Maybe more.  I'm not going to count anymore.  It is such an uplifting and interesting encounter that thoroughly surprised me.

I found this article (and, yes, I am going to cut and paste it again here) by a Jesuit Priest that beautifully elucidates why it is that I like the video so much ... why I am awed by it, truth be told ... because it teaches us about humility, vocation, human connection, humor, and grace.  I am so very thankful that he wrote this so that I could share its insight about such a lovely encounter.

Grace-filled is what he called it.  It certainly was that.  And grace is always, always uplifting.

[Have you watched the video yet??]

James Martin, S.J. | June 26, 2018
The grace-filled encounter between Paul McCartney and James Corden

I don’t usually comment on too many “non-religious” or “non-spiritual” things (since I try to stick with what I know), but I thought I would make an exception. A few days ago, I watched Sir Paul McCartney’s “Carpool Karaoke” with the television host James Corden video, as did 16 million (and counting) other people, and found it deeply moving.

Why? Not just because I’ve been a Beatles fan since the 1960s (and marvel that my 13-year-old nephew is, too: he saw Ringo Starr in concert just a few weeks back). But because this extraordinary episode has much to teach us.

First, it teaches us about humility. Of course, Paul McCartney has had 50 years of practice in dealing with fans from all over the world, and, of course, he knew that he was being filmed at the time, but notice how kind, patient and generous he is with everyone he meets in his hometown of Liverpool. (“I’m comin’ in your shop, Luv!” “Tell him I said hi!”) Notice a myriad other small instances of humility: how, for example, he confesses that he thought the Beatles’s songs wouldn't last for more than 10 years. To my mind, it’s hard to “fake” humility. Sir Paul is clearly someone who doesn’t need to prove anything. It’s refreshing to see.

Second, it teaches us about vocation. Clearly, Paul McCartney has a vocation and one that he has lived out well: as a singer and songwriter. That’s a bit of an understatement, isn’t it? But anyone with even a passing knowledge of the Beatles knows something about their hardscrabble beginnings (cf: the Cavern Club), how diligently and tirelessly they worked, and how each tried their best to live out what they felt they were called to do—even at the end, when the band broke up. (Martin Scorsese’s wonderful film on George Harrison, “Living in the Material World,” shows this as well.) It’s a joy to see someone so fully living out his or her vocation and continuing to live it out so completely. (My cousin told me that Paul McCartney astonished her in concert, just a few years ago, in his 70s, with his vitality and range.) Seeing someone live out their vocation so fully is like seeing a flower finally bloom.

Third, it teaches us about human connection. The moment when Sir Paul shares a personal story about the origins of the song “Let It Be” is followed by Corden sharing something equally as personal about what the song meant to him as a child, which is followed up Paul’s simple spiritual encouragement to Corden. To me, that particular moment is a marvelously real example of what Jesuits call “faith sharing.”

Fourth, it teaches us about humor. They have a lot of fun, these two, and so do those around them. Sir Paul has a healthy sense of humor about himself and his “mates,” which has always been one of the most appealing things about the Beatles. (See the superb documentary about their longtime fan-club president, “Good Ol Freda,” for more on the enormous fun that “the lads” had in their heyday.) The same kind of larky attitude is evident here. Life can be fun. Why not have a laugh from time to time?

Finally, it teaches us about grace. There are moments of grace all throughout this lovely video: the expression on the face of the owner of the eponymous barber shop on Penny Lane when Paul surprises her; Paul showing James how he used to play the guitar sitting on the loo; and the look on the face of the middle-aged woman in the pub when Paul starts to sing (you know that she must have been a big fan of the Fab Four back in the day).

So, in the end, this segment is indeed religious, in its original meaning (re-ligio: to tie back). It reveals how one person’s living out of his or her vocation can tie so many people together. And it is deeply spiritual as well, in that it shows us how the spirit can work in such beautiful, touching and unexpected ways. In such grace-filled ways.

Grace is all you need, to paraphrase John Lennon.

And Paul McCartney.


Thursday, June 28, 2018

A Myrtle tool...

Shortly before my mother's visit, I came across this article on how Complex PTSD impacts survivors.  It was as if someone had crawled inside my head and copied down the battle of my life, all the things that I used to be ever so much better at keeping hidden.  Trauma broke me, broke my ability to pretend and so much of the below came spilling out.

I posted this article on Facebook, because I wanted my friends to read it.  I think that it is a great tool, a perfect tool really, to talk about PTSD and its impact on my life, my faith, and my relationships.  But only one person commented on it.  So, I copied the article in to a word document and cut out all of the ads and images to make it easier to read and emailed it to my friends.  I still yearn to talk about it.  But that has not happened with them.

I took it to my therapist, who was almost dumbfounded at such a great resource, how comprehensive it is as an overview and who immediately saw its potential with some of her other clients and her other therapists.  She made copies for both and started using it.  What I asked her was if we could use it as a blue print to start talking about PTSD, since most of what we've talked about for 14 months has been the battle (and trauma) of being chronically ill.

My realtor came to visit and, almost on impulse, I gave her the copy I had in my purse to use during my therapy visits.  To my surprise, she read it that night and texted me the next day offering to talk with me about the article.  For one, she said she saw me all throughout it and it helped me to understand her better.  But she also has a dear one who has PTSD and the article helped her to understand her.  She was thankful that I shared, for our relationship and for that with her loved one.

And then I also sent it to the financial advisor who helped me back when I was first seeking disability and with whom I have recently got back in touch.  I reached out to her, a veritable stranger, on a terribly dark day and God has blessed me through her ever since.  Oft in most surprising ways.

One of which is that she read the article.  Really read it.  So much so that I can tell her "the problem is No. 9" and she knows what I mean and we can talk about looking for a rescuer and how that has hurt me.  She and my realtor better understand my spiritual agony give No. 1 and No. 6 (and even No. 9 ... because of the guilt).  

With my entire being, I long for my two closest friends and my sister to read it and to talk with me about it.  To let it become another Myrtle tool in our relationships.  And I desperately wish that I had a pastor who knew me would read it and talk with me about belief and salvation.

I could post the link here, but I thought I would make it really, really, really easy to read by including the text, with the link at the end.

I read the article and I felt known.
I read the article and I felt despair thinking about my life.
I read the article and I felt the shallow, burning cuts of hope.

AUGUST 17, 2017

12 Life-Impacting Symptoms Complex PTSD Survivors Endure

Complex trauma is ongoing or repeated interpersonal trauma, where the victim is traumatized in captivity, and where there is no perceived way to escape. Ongoing child abuse is captivity abuse because the child cannot escape. Domestic violence is another example. Forced prostitution/sex trafficking is another.

Complex PTSD is a proposed disorder which is different to post-traumatic stress disorder. Many of the issues and symptoms endured by complex trauma survivors are outside of the list of symptoms within the (uncomplicated) PTSD diagnostic criterion. Complex PTSD does acknowledge and validate these added symptoms.

The impact of complex trauma is very different to a one time or short-lived trauma. The effect of repeated/ongoing trauma—caused by people—changes the brain, and also changes the survivor at a core level. It changes the way survivors view the world, other people and themselves in profound ways.

The following are some of the symptoms and impact most felt by complex trauma survivors.

1. Deep Fear Of Trust
People who endure ongoing abuse, particularly from significant people in their lives, develop an intense and understandable fear of trusting people. If the abuse was parents or caregivers, this intensifies. Ongoing trauma wires the brain for fear and distrust. It becomes the way the brain copes with any further potential abuse. Complex trauma survivors often find trusting people very difficult, and it takes little for any trust built to be destroyed. The brain senses issues and this overwhelms the already severely-traumatized brain. This fear of trust is extremely impactful on a survivor’s life. Trust can be learned with support and an understanding of trusting people slowly and carefully.

2. Terminal Aloneness
This is a phrase I used to describe to my counselor—the terribly painful aloneness I have always felt as a complex trauma survivor. Survivors often feel so little connection and trust with people, they remain in a terrible state of aloneness, even when surrounded by people. I described it once as having a glass wall between myself and other people. I can see them, but I cannot connect with them.

Another issue that increases this aloneness is feeling different to other people. Feeling damaged, broken and unable to be like other people can haunt a survivor, increasing the loneliness.

3. Emotion Regulation
Intense emotions are common with complex trauma survivors. It is understandable that ongoing abuse can cause many different and intense emotions. This is normal for complex trauma survivors.

Learning to manage and regulate emotions is vital in being able to manage all the other symptoms.

4. Emotional Flashbacks
Flashbacks are something all PTSD survivors can deal with, and there are three types:

Visual Flashbacks: where your mind is triggered and transported back to the trauma, and you feel as though you are reliving it.

Somatic Flashbacks: where the survivor feels sensations, pain and discomfort in areas of the body, affected by the trauma. This pain/sensations cannot be explained by any other health issues, and are triggered by something that creates the body to “feel” the trauma again.

Emotional Flashbacks: the least known and understood, and yet the type complex trauma survivors can experience the most. These are where emotions from the past are triggered. Often the survivor does not understand these intense emotions are flashbacks, and it appears the survivor is being irrationally emotional. When I learned about emotional flashbacks, it was a huge lightbulb moment of finally understanding why I have intense emotions, when they do not reflect the issue occurring now, but are in fact emotions felt during the trauma, being triggered. But, there is no visual of the trauma – as with visual flashbacks. So, it takes a lot of work to start to understand when experiencing an emotional flashback.

5. Hypervigilance About People
Most people with PTSD have hypervigilance, where the person scans the environment for potential risks and likes to have their back to the wall.

But complex trauma survivors often have a deep subconscious need to “work people out.” Since childhood, I have been aware of people’s non-verbal cues; their body language, their tone of voice, their facial expressions. I also subconsciously learn people’s habits and store away what they say. Then if anything occurs that contradicts any of this, it will immediately flag as something potentially dangerous.

This can be exhausting. And it can create a deep skillset of discernment about people. The aim of healing fear-based hyper-vigilance is turning it into non-fear-based discernment.

6. Loss Of Faith
Complex trauma survivors often endure a loss of faith. This can be about people, about the world being good, about religion, and a loss of faith about self.

Complex trauma survivors often view the world as dangerous and people as all potentially abusive, which is understandable when having endured ongoing severe abuse.

Many complex trauma survivors walk away from their religious beliefs. For example, to believe in a good and loving God who allows suffering and heinous abuse to occur can feel like the ultimate betrayal. This is something needing considerable compassion.

7. Profoundly Hurt Inner Child
Childhood complex trauma survivors, often have a very hurt inner child that continues on to affect the survivor in adulthood. When a child’s emotional needs are not met and a child is repeatedly hurt and abused, this deeply and profoundly affects the child’s development. A survivor will often continue on subconsciously wanting those unmet childhood needs in adulthood. Looking for safety, protection, being cherished and loved can often be normal unmet needs in childhood, and the survivor searches for these in other adults. This can be where survivors search for mother and father figures. Transference issues in counseling can occur and this is normal for childhood abuse survivors.

Inner child healing can be healing for childhood abuse survivors. It is where the survivor begins to meet the needs of their hurt and wounded child, themselves.

8. Helplessness and Toxic Shame
Due to enduring ongoing or repeated abuse, the survivor can develop a sense of hopelessness—that nothing will ever be OK. They can feel so profoundly damaged, they see no hope for anything to get better. When faced with long periods of abuse, it does feel like there is no hope of anything changing. And even when the abuse or trauma stops, the survivor can continue on having these deep core level beliefs of hopelessness. This is intensified by the terribly life-impacting symptoms of complex PTSD that keep the survivor stuck with the trauma, with little hope of this easing.

Toxic shame is a common issue survivors of complex trauma endure. Often the perpetrators of the abuse make the survivor feel they deserved it, or they were the reason for it. Often survivors are made to feel they don’t deserve to be treated any better.

Sexual abuse can create a whole added layer of toxic shame, which requires very specific and compassionate therapy, if this is accessible. Often, sexual abuse survivors who are repeatedly enduring this heinous abuse can develop feelings of being dirty, damaged and disgusting when their bodies are violated in this way.

9. Repeated Search For A Rescuer
Subconsciously looking for someone to rescue them is something many survivors understandably think about during the ongoing trauma and this can continue on after the trauma has ceased. The survivor can feel helpless and yearn for someone to come and rescue them from the pain they feel and want them to make their lives better. This sadly often leads to the survivor seeking out the wrong types of people and being re-traumatized repeatedly.

10. Dissociation
When enduring ongoing abuse, the brain can utilize dissociation as a coping method. This can be from daydreaming to more life-impacting forms of dissociation such as dissociative identity disorder (DID). This is particularly experienced by child abuse survivors, who are emotionally unable to cope with trauma in the same way an adult can.

11. Persistent Sadness and Being Suicidal
Complex trauma survivors often experience ongoing states of sadness and severe depression. Mood disorders are often co-morbid with complex PTSD.

Complex trauma survivors are high risk for suicidal thoughts, suicide ideation and being actively suicidal. Suicide ideation can become a way of coping, where the survivor feels like they have a way to end the severe pain if it becomes any worse. Often the deep emotional pain survivors feel, can feel unbearable. This is when survivors are at risk of developing suicidal thoughts.

12. Muscle Armoring
Many complex trauma survivors, who have experienced ongoing abuse, develop body hyper-vigilance. This is where the body is continually tensed, as though the body is “braced” for potential trauma. This leads to pain issues as the muscles are being overworked. Chronic pain and other issues related such as chronic fatigue and fibromyalgia can result. Massage, guided muscle relaxation and other ways to manage this can help.

All of these issues are very normal for complex trauma survivors. Enduring complex trauma is not a normal life experience, and therefore the consequences it creates are different, yet very normal for what they have experienced and endured.

Not every survivor will endure all these, and there are other symptoms that can be endured. I always suggest trauma-informed counseling if that is accessible. There are medications available to help with symptoms such as anxiety and depression.

There are also many self-help strategies to manage the symptoms and help heal.

Lastly, I advise that empathy, gentleness and compassion are required for complex trauma survivors.

~Lilly Hope Lucario (Severe and multiple complex trauma survivor).


Wednesday, June 27, 2018

More pain, new pain...

My mother came to visit June 10th through the 15th, having not been here for 18 months.  I worked very hard to give her a peaceful and pleasant visit, filled with things she enjoyed.  Sadly, we did not play a single hand of Skipbo, but otherwise the visit went as I desired for her.  Well, she did say that I need to serve her more of her beloved Santa Fe Soup on her next visit.  I can do that.  Too bad that I could not send her home on the plane with a few jars.

Alas, though, I have spent the bulk of the time since she left sleeping and resting and doing a little bit here and there and getting all exhausted all over again.  I don't mind.  I mean, I wish that I were better at just being sick around others, but I am not sure that that many folk want to be around me whilst I am sick.  And I am lonely.  So, it is simply better to pretend to be well.


A little while ago, not even two months, I think, my left shoulder had a twinge.  I stopped doing my free weights immediately and thought it would blow over.  Then, just before my mother came, it started hurting.  During her visit, it got so bad I thought I would just about die from it.  It sounds like an exaggeration and I know that it could always be worse.  But ... oh my!  I was in such despair.

I started putting the topical NSAID (like ibuprofen) from the plantar fasciitis in my left foot that just won't go away.  My foot is despairing.  My shoulder is despairing.  The medication is helping.  Although, tonight, I wept my tearless tears because it struck me that the gel is like my Celebrex.  It doesn't heal anything.  It is just a pain medication.  Another monthly medication to try and fit into such a tiny pool of money upon which I am trying to live.

Okay.  Not tiny.  Only tiny if you are chronically ill.

The x-ray shows arthritis has developed there.  So quickly is surprising ... at least the pain escalating so quickly.  What I need next to determine course of treatment is an MRI.  Yes, well, that is not happening, is it?  SIGH.  Right now, the topical pain treatment is my best option.

It just grieves me that so much of my life has to do with pain, dealing with it, figuring out how to treat it with the limited options available to me and with the even more limited funds available to me. I cannot just ignore the pain, but I want to do so.  I want to declare from here on out I will just fall silent.  I suppose I could do that.  But I would also want to truly be that hermit, the one who simply doesn't seen anyone.

Bones breaking.  That's what it feels like.  It hurts when I move my shoulder.  So much so that at times I gasp.  But it it almost worse when I am still.  And it feels as if the bone in my arm near my shoulder is breaking.  It aches just like when I've had broken bones in the past.  The aching gets to me.  Deeply.

So, I've spent the past two weeks mostly sleeping and resting and trying to recover from a visit from my mother.  And I've spent the past three weeks trying to swallow life with constant pain in my left shoulder.

More pain.
New pain.

Thursday, June 07, 2018

Giving thanks...

I don't know where I would be without Immitrex (sumatriptan) and Toradol (ketoralac).  There simply are no sufficient words for the pain of a migraine.  I often think back to back when I was caught in the maelstrom of chronic migraines.  Such misery.  I certainly could not cope with that now on top of everything else.

Climbing my way out of that black hole was one thing that I have done for myself that was truly good.  I read about the whys and wherefores of the chronic migraine cycle and began to work on what I could do myself, aside from finding the right medication for me.  What I can do is stop the stimuli whilst battling the migraine (turn off lights and sounds) and work on relaxing after the pain has ceased (my Sunbeam neck and shoulders heating pad being my big gun in that regard).

My original GP when I moved here helped me to figure out that I needed something immediate to help with the intense pain and gave me Toradol.  And she helped me to determine that I need a second dose of Immitrex with my migraines.  I take them two hours apart, so getting to that second hour is the hardest part, hard to hang on, hard to not fall into deep despair.  Somewhere into the third hour, the pain begins to ease and hope seems a possibility.  Hope that the pain might eventually come to an end.

Then, I could have migraines as much as half the month.  Now, I am closer to 2-3 a month.  That is a manageable number, though having none would be preferable.   What would be best would be: none. In any case, what makes them manageable is that I escaped the cycle of bounce-back and chronic migraines.

Thank you, Jesus!

When I was trying to figure out what meds I needed, the neurologist I saw was more interested in trying new ones rather than ensuring that what I was taking was helping me as best it can.  One of the new medications landed me in the hospital!  Now, I know there was a conflict with one of my other medications.  But I also know that it is oft important to look at what you are taking and how you are taking it and evaluate if an adjustment is needed before abandoning it altogether.

Think of the pilocarpine, my new saliva medication.  It is taking me a long, long while trying to adjust to the medication.  Truly, as I have told anyone and everyone, it is "kicking my butt."  However, with patience, I can now take two full pills, twice a day.  That is half the normal dose.  And yet half means that I have more saliva in my mouth than I've had for years.

It is so very weird!

I have struggled and struggled and struggled to take the medication, increasing my dose by a quarter pill at a time.  So often, I think why are you doing this to yourself?  But this is why.  Weirdness!  Saliva!

I am taking a break, though, for the interim.  I mean, I am pausing at the half dose before I start the long, long task of doubling what I am taking now.   Still, that's quite an accomplishment, if you ask me.

I do wonder ... how long until having saliva in my mouth is not longer weird?

Meanwhile, I am giving thanks for two other medications.  I am giving thanks because I have been battling a terrible migraine, brought on by the utter and absolute wretchedness that follows missing doses of gabapentin and baclofen.

Last night, I missed my midnight meds, which has doses of both.  It was the third dose of baclofen that I have missed this week already!  SIGH.  Anyway, there I was, growing more and more ill and then, in the wee hours of the morning, I realized that I had missed last night's meds.  That's why I'm so ill!  I'm in withdrawal! 

Sadly, it takes at least two doses before I start to feel better.  Being in withdrawal and battling a migraine is an awful combination of wretchedness.  And it is a terrible place to be, waiting on medications to start working for different reasons and being ill for different reasons, all the while struggling to get through moment by moment, being crushed by chronic illness despair.

So, I spent much of the day working on giving thanks for medications that I have, for the GP who was persistent in helping me, for the Internet for teaching me about bounce-back and chronic migraine cycles, and for friends who remain even when so very much of my life is focused on being ill.

Wednesday, June 06, 2018

Catching up...

[I started writing this last Thursday and have been struggling to finish it.  SIGH.]

Yesterday, I felt sucker-punched by my blood test results. My kidney function was the worst that it has been thus far ... not the temporarily “better” it was supposed to be having cut my arthritis pain medication in half in order to bump up my function so that I could have the contrast I need for my MRI.

Now ... crap kidneys and the very real possibility of not getting to have the MRI that I have been waiting for since December. The MRI that should help determine the reason for the constant shocking in my hands. If I miss this appointment, it will take between four and six weeks until I will be able to get another appointment.

That is bad enough, but the reality is that my kidneys are not tolerating the high dose steroid treatment that I am on right now and steroid treatment is par for the course with Sjögren’s! I need to be able to tolerate steroids. Plus, I still have two weeks remaining on my current course. So, the kidney function results were both an immediate blow and a long-term concern.

There.  There I stopped because I my doctor walked into the exam room and we started my appointment.  My sucker-punch got worse.  Much worse.  

You see, the radiologist who has been dragging out the approval for my MRI decided, after FOUR WEEKS, of having an appointment on the books, that he was not going to do the MRI.  He wants me to have a spinal tap first, to check for banding.  It is an MS test I already had ... it was part of my diagnosis in 1994.  It is also not something normally done before an MRI of the brain.

I just ... I was crushed.  My GP said she would call the neurologist and try to talk with her about talking with the radiologist.  But I knew ... I knew this was the end of the line for me.  I just knew it.  Sure enough, this morning, my neurologist called to talk about the problem and to say that my cardiologist was out of town.  I spoke with her about his approval and she went to call the radiologist.  Shortly thereafter, she called me back to say that the radiologist was refusing to do the MRI because of the risk of DEATH.

I'd laugh if it wasn't so absurd.

I mean, my pacemaker has been on the market for years and has been MRI-ed safely in Europe for years.  No one died.  No one is going to die.  I am not going to die.  There is just no risk of death.  Maybe ... just maybe ... there could be a glitch in its programming, but that is why I'd have a pacemaker tech on site.  But Biotronik would not be the bazillion dollar company it is if there were even glitches on its pro-MRI series of pacemakers.  THERE IS NO RISK OF DEATH OR OTHERWISE.


My neurologist is going to send the order for the MRI over to Lutheran Hospital to see if a different radiologist might see the matter more clearly.

Here's the problem in a nutshell:  When I received my MRI, there was no such thing as an approved devices list.  But then the FDA decided it wanted to create one.  Not content to rely on YEARS of proven data, the FDA wants its own data.  So, sadly, my device is not yet on the list.  My leads are.  The wires going from the pacemaker into my heart muscle are approved.  Just. Not. The. Pacemaker.

Back in January, my cardiologist told me that all he had to do was to make a personal guarantee for the safety of the device and I could have an MRI.  One to two weeks to arrange the matter was all that was needed.  MONTHS later, I heard that it was just a matter of getting one of the three MRIs my GP had ordered done first to prove the device was safe.  So, we whittled the list down to one.  Another month later, I learned that the radiologist wanted me to see a neurologist first, before having a MRI to ensure that it was needed.  Then, last Wednesday, four weeks after getting the MRI finally scheduled, he started a new round of objections centered on having a spinal tap first because of the RISK OF DEATH he is certain I am facing.

Basically, the radiologist is insulting my GP, my cardiologist, and my neurologist because they are all "needlessly" risking my life.  SIGH.

I was so very crushed Friday night.  So very despairing about my kidneys and about the shock of hearing the MRI was in jeopardy.  I am so weary of bad news and having to fight for what I need medically.  Insurance.  Prescriptions.  This darned MRI.

Of course, I have been crushed since the trifecta of how I was treated but the podiatrist, the colonoscopy staff, and the neurologist's nurse.  I have been so very hopeless, seeing no way forward other than to Shut up.  Be still.  Wait until it is over.   The radiologist wants me to do that ... to just let this man who has NO TRAINING in neurology be the deciding factor on what testing I will or will not have in order to assess my treatment options.

And, to be honest, a part of me wanted to SCREAM This is not fair!  Especially since Sunday was my birthday.  Why did I have to receive bad news on my birthday weekend?  It's not fair!  

I was looking forward to my birthday, to having my Facebook friends wish me happy birthday.  But only eight did so.  Is it so very hard to wish someone a happy birthday, especially since Facebook reminds you to do so??  I mean, I have a small group of friends because I want my interactions to be real.  I did start posting most everything as publish, so folk could follow me, if they want, but so that I could keep my friends—keep the ones who could write on my wall—limited to folk I know.  It is such an easy thing to do.  I just wanted to be remembered.  I wanted my birthday to matter.  But it was but a blip.


As far as my birthday goes, I had wanted to spend my birthday money on presents, on things for myself.  The past few years, for birthdays and Christmases, I have been spending the money on needful things, such as medical and bills and groceries.  This time, I wanted to enjoy the money.  However, I caved and spent half on medical and half on myself.

I had decided that the way I wanted to add flowers/color to my haven was to have planters in the back two corners.  For a while, I was contemplating Firewood Man building me ones that matched the fence panels.  However, I decided I wanted ceramic ones.  The evening of my birthday, I went looking, thinking only to window-shop.  However, I found two ceramic planters on clearance that fit my space well, I think.

I wanted to cheat and use pots in the top so that I didn't have to bring in the pots in the winter, lest they freeze and split.  However, I could only find red ones left.  Well, there was one GREEN pot and lots of reds ones.  Hopefully, next spring, I can get the GREEN ones that were a close match.

I couldn't decide which flowers I wanted, so my realtor, who was looking with me, talked me into buying a mixture of coleus.  I think that that was a good idea.  Once they grow up some, I think I will have what I want ... a riot of color brighting up my haven.

So, now, I am officially declaring my haven completed.

The other two birthday "gifts" I bought with my money are a top to wear with my skirts and a small bluetooth speaker to use when I am streaming out in my haven.  The speakers on my laptop are not quite loud enough for my ears.

I thought it rather adorable where Amos chose to sit whilst I was working on putting the pots together.  Look carefully.  Look between his legs.

Today, today I leveraged my anger at the radiologist, after getting the official call about the MRI being canceled, by working on needs in my yard.

I love my Rose of Sharons, but they started dropping babies each spring.  Thousands of babies.  Thousands of babies that I have to dig out of the long bed that is on that side of my yard.  It is grueling weeding work.

I actually started pulling them up last night and got about 40% of the bed done.  Today, I sat down and plowed through the rest of it.  If you look closely at the grass, you will see what is most likely hundreds if not another thousand babies in the yard.  Hopefully, Firewood Man will be able to put out weedkiller this weekend and solve that problem for me.

Frankly, I don't know how many more times I can do this rather grueling job.  Have I mentioned how difficult it is?  It is grueling.  I wonder if I should have Firewood Man dig up the Rose of Sharons and start over with some other barrier to block the rather unattractive back yard of my neighbor.

The soil is incredibly dry and clumpy, so as I worked I dug down about six inches.  When I was finished, I sowed in a healthy dose of gypsum to try and break down the soil a bit.  In the mail today, I received an unexpected $40, so I plan on getting mulch either Friday or Saturday.  Or maybe even tomorrow ... after my lung testing.  I've been trying to figure out how to pay for groceries for my mother's visit and mulch.  Now, I can have both!

Since this was the first window of reasonable weather and no rain, I also sealed the two raised beds.  This one has not been sealed since I put it in ... three or was it four years ago.  I cannot remember. It is looking ever so sharp again now!

The Raised Bed 2.0 back near my haven still has wood that is green!  I mean, the wood has been drying out for 14 months.  It should be ready now!  I think I might should have waited until the fall, but I did not.  I plunged ahead and took care of this bed, too.  I didn't want the raw wood look spoiling the visual rest of my haven now that it is completed.  You can see those green bits, but I still think the bed looks better overall.

The last "wood" task was to seal the back steps.  The lowest one (not quite in the shot) is much more rough than the others.  They could have waited another year or two or maybe even three.  But that step needed sealing, so I did the whole staircase for continuity's sake.  Now, I just have to remember not to let Amos trot outside and down the steps for the next two days.  

I was glad to have ticked off two large tasks from my homeowner list, even if it was because I am so very frustrated.  

And brokenhearted.  
And crushed.  
And despairing.

As far as being a homeowner, the tasks I still need to do is to power wash the airing porch deck, to wash the airing porch railing, and to paint the attic windows that I failed to paint last year.  I'd be mighty happy if I could tend to the latter.  Oh, yes, it is also time to clean the carpet upstairs.  The latter is most likely the only thing I will be able to get done before my mother arrives next Sunday.

The other task I started yesterday and finished today was to strip the leaves off of the dill that I harvested yesterday.  I let some dill go to see, because I was worried about it not coming up again this year.  Hah!  I have dill everywhere now.  I don't mind digging it up, because I have harvested all the dill I downsized from the spot where it is growing.  I was hoping to send some dill out to my dear friends, but I will have to wait and see how much is left once it dries out.  Of course, there is plenty more dill to harvest!


Thursday, May 31, 2018

What no one wants to hear...

I spent Sunday and Monday working on building up my larder again, which always makes me feel as if I accomplished something worthwhile.  It is rather amazing to me this way of cooking I have learned.  I mean, learning to cook is the only thing in my life that is moving forward.  The rest of me is falling back, losing ground, fading away.

With all the things that I have learned to cook, I have more than a dozen "staples" now that I like to keep on hand as my main meals.  When the mason jar drawer becomes full, I get out the pots and start cooking.  Usually, I just cook what I am hankering for, but this time I took an inventory of the basement freezer to see which of my staples were low.  That changed my cooking agenda and leaves me with a full freezer of my favorites with 14 different options from which to choose.

It was nice have forward progress for once.

Tuesday ... Tuesday I spent trying to say something first in therapy and second to a friend.  But the words I was speaking did not seem to translate from my brain to their ears.  I have been struggling mightily ever since the colonoscopy, the visit to the podiatrist, and the exchange with the neurologist's nurse.  All three instances of really crappy medical care.  But instances that drive home the need to be ... compliant and quiet as a patient.  Anyone who needs more, needs care beyond that which is not already scheduled and practiced and normal is someone to be crushed.  Crushed by callousness.  Crushed by cruelty.  Crushed by being crazy-labled.

Shut up.  Be still.  Wait until it is over.

More and more, I feel as if that is really what I need to do in the medical world and out.  That I should just ... live that way.  That crushes me.

So, of course, I thought about writing about what no one wants to hear as a means of turning aside my thoughts about the Sanctuary.  The torment and torture of my bowels.  Because I cannot escape them.  And I deal with them daily.  And the wretchedness and ... the shame.  Shame from the part of my body torturing and tormenting me.  Shame from where I am whilst being torment and torture.

I need to poop and I scream from the pain of my pudendal nerve flaring.
I need to poop and I struggle to not faint from the trigger of pain.
I need to poop and I battle nausea from pressure against my vagus nerve.
I need to poop and I vomit from pressure against my vagus nerve.
I need to poop and I battle pre-syncope from pressure against my vagus nerve.
I need to poop and I faint from pressure against my vagus nerve.
I need to poop and I grow weak from pressure against my vagus nerve.
I need to poop and I tremble and shake from pressure against my vagus nerve.
I poop and I scream from the pain of my flesh tearing.
I poop and I scream from the pain of my pudendal nerve flaring.
I poop and I struggle to not faint from the trigger of pain.
I poop and I battle nausea from pressure against my vagus nerve.
I poop and I vomit from pressure against my vagus nerve.
I poop and I battle pre-syncope from pressure against my vagus nerve.
I poop and I faint from pressure against my vagus nerve.
I poop and I grow weak from pressure against my vagus nerve.
I poop and I tremble and shake from pressure against my vagus nerve.

I take five different things just to try to poop every day, because my bowels are so very slow.  This leaves me feeling crazy, because ... well ... who would want to poop, when pooping causes such wretchedness in the body? 

Because my bowels are so very slow, the need to poop can start hours before the act can happen.  That means I am ill for hours.

When I do not manage to go, then I am stuck with the agony of constipation.  A while back, I went 19 days before I finally tried a medication that tipped me over into diarrhea for more than a day.  Violent diarrhea.

And then there is the gas from both a medication I take and from the slow bowels.  The pressure of the gas is enough to trigger pain, nausea, weakness, fainting, trembling, and shaking.  Sometimes, when it is particularly bad, I will mash on my abdomen to try to move the gas along.  But I can become so bloated I look as if I am expecting a baby and the pain of it leaves me writhing on the bathroom floor or flailing about in my bed as if I were a beached whale.

Daily, I deal with wretchedness in my body because of my bowels.
Wretchedness and shame and silence.

It's one battle amongst many when it comes to my body.
A lonely battle.
A shameful battle.
A silent battle.
A weary, dispiriting battle.