Tuesday, August 14, 2018

Torture's over...

More lost days.  I blame the spinal tap.

Monday was the day of torture, though I really struggled the week leading up to it and continue on today, though in a much different day.  I want to blog about it, but I am not sure I am up for the blow-by-blow entry that I prefer.

Today, my back hurts and my head aches.  I battled a migraine and a blood sugar crash in the middle of the night and so have the post period of both of those in which I always feel like crap.  But I feel like crap from the GINORMOUS needle that was shoved in my spine yesterday!

I have been rather frightened of the pain (yes, it did hurt) and the triggers (successfully navigated, Christ be praised) for several weeks, but have been especially felled since last week.  I knew my nerves would not like being stuck with a needle (they did not) and I knew that my mind would not like being unclothed (it did not).  I could not see a way through either of those.  I mean, there is nothing much to do about the pain.  And I could not see a way past having my gown untied.  But, as for the latter, God could and He provided in a way that was an absolute blessing.

Having Becky here is just amazing to me.  I get so darn giddy, that the excitement carries me through what would otherwise send me to my mattress for days on end.  In a way, having her come on Saturday was probably the biggest blessing of all because we visited right up until it was time for her to go up to bed Sunday evening.  That was wonderful for me in terms of plain distraction.  Only, once I realized I'd be alone the night before the spinal tap, I tried, nearly, to keep her downstairs with me.

There were two Myrtles:  one who wanted her friend to have the rest she desired and the other one who was finding herself in the throes of abject fear about the morrow.

Sadly, the fearful one won out and kept her exhausted friend up got all snippy with her.  It was not a gracious moment by far.  Grace, as far as that which was received, came later.

The first definition of grace I learned was: "unmerited favor."  Grace is favor from God we receive by no merit of our own.  Never before have I believed a moment filled with unmerited favor more so than when the radiologist tech told me that she had scrub pants for me to wear with my gown.  In that moment, I knew that I was loved and I knew that I would be able to get through the unclothed portion of the procedure.

Or at least most of it.

Emboldened by Becky's presence and the varied ways that she works to cheer me (such as wearing our shared Dr Pepper shirt), I ended up just telling the radiologist tech my two main fears right up front when she said wanted to know how she could help me get through the spinal tap.

First, I finally found the words to explain, in brief, what the biggest trigger for me would be and why:  opening my gown ... because it reminds me how I felt having my clothes removed by those who were hurting me.  I know that the two are not the same at all, but my mind and body don't.  They become caught in the past and there is little I can do about that ... at least at the moment.

Second, my nerves over-react all the blooming time.  Mukcking about with a needle in my spine did not seem to be the way to a pain-free life.  And I was right.  IT HURT.  In fact, the entire time the needle was in my body, after he reached about mid-way through its insertion, I had this shooting pain that arced from the insertion site over to my left hip.  It pulsed and throbbed and made me want to call a halt before much was done.  But I was serious.

What brought me to my figurative knees is that I began to overheat.  As sweat was pouring down my neck from my head, I started to throw in the towel. Nothing was going to be all right ever again.  I just despaired.  And then Becky fetched my bamboo and paper hand fan from my purse and started to cool me off.

Becky kept that up for more than an hour, with just a few breaks being spelled by the radiologist tech.  Truly, it was from her interaction that we learned of the testing happening just a wee little bit from the tech.  I was astounded at her stamina and her willingness to help me.  Truly I did not think that I could get through the procedure, but I did.

Part of the difficulty was that my cerebral spinal fluid (CSF) flow rate was interminably slow.  It was about twenty minutes until the first drop, the first drop made it through the tubing from the needle up to the valve and into the collection container.  TWENTY MINUTES.  The lab requested 18cc for the tests that were ordered, but the radiologist essentially gave up after 10.5cc.

Throughout the hour plus of the dripping part, he would adjust the needle to try an improve flow rate and trigger my nerves.  He also kept raising the table until it was probably at a 70 degree angle.  Nothing really worked.  There was no great increase in flow.

I did ask and have the nurse assigned to my post care call my neurologist's office to ask that the tests be ordered in importance in case there was not enough fluid for all of the tests.  I asked this because the MS panel was listed 8th and I really wanted that one first!  I had no desire for the lyme test because I have been tested for lyme disease umpteen different times already.  Thus far, two tests have posted.  Since my follow-up visit is not for five weeks, I am hoping that all the tests results post.  One of those results is for cryptococcal meningitis.  Since I was certain I did not have that either, I didn't care for that result and sincerely hope the test was run because all the tests were run.  The reason I say this is because I am NOT doing this again.

The two greatest risks from the procedure are infection and a CSF headache, which can become rather serious.  The main way to diagnose the latter is symptoms, primarily it being a positional headache.  Lying down will alleviate the headache.  Because nothing is easy for me, I will note that I have a headache that is alleviated with standing, but is made worse by sitting.  Go figure.  I should no longer be at risk for the CSF headache after Thursday.

The thing about the scrub pants is that God had already provided a solution for me before I even had a chance to fumble and bumble my way through explaining my fear and the trigger!  It was so humbling to hear her words and realize at that time the provision my Good Shepherd had made.  If I did not have Sjögren's, I think I might have flooded the room with my tears!

I am hoping that the lingering shame I feel leaves soon, along with the headache and injection sight pain.  I am hoping the profundity of the realization of the depth of God's care for me will remain.

Friday, August 10, 2018

I love words...

About the only thing that I did not do today was laundry!  I started out with a list of five tasks and ended up with a list that had nearly quadrupled!

Some of the things I did were personal tasks, such as writing letters to my bank and my insurance company, paying bills, and filing.  Some were cleaning tasks, to get the house ready for Becky's visit. I also went to Walmart for groceries and Panera for bread.  And I made brown sugar oatmeal cookies, tea, Gatorade, and bacon bits.  My goal was to have everything that needed doing done by midnight, so that all I have to do until Becky's plane lands tomorrow is rest.  Plus, I didn't want anything nagging me whilst she is here, like those letters and bills.  And I was tired of being dive bombed by the hummingbirds because the feeders were low!

Needless to say, I am weary.  But I am weary much of the time.  I am bloody exhausted all of the time.  And I am fatigued often.

I love words.  I love how there are so many different words for what is essentially the same thing, but is not the same in the meaning you are trying to convey.  Okay ... that was clunky, but I am tired.  I mean that I love that we have "beach," "shore," and "coast."  All three can be the same place, but not always.

I used to collect words in my word book, and I wish I still did.  But I am tired.  And struggle with brain fog.   In the past, I would keep sticky notes on the covers of my books and write down the words I didn't know as I read.  I define "don't know" as being unable to define it for another person.  So often, I glean basic meaning from the context and thus understand the sentence, but the truth is that I do not really know the word.

In thinking about words and my adoration of them and my lack of word study of late, I started using the definition feature on my Kindle.  So, for example, last night I finally learned what a halberd is.  I knew it was a weapon, but now I know it is a combination of a spear and an axe and what you often see in fantasy movies.  Thus, when someone is described as throwing a halberd as a spear at a door, I now understand the extra strength it took to throw something not designed for throwing and have it hit your preferred target.

I love words.  I love when folk use a goodly variety of words instead of depending on the tried and true.  I saw an interview with David Tennent once where he said it would be churlish if he did something.  Then he had to define churlish for someone there.  Of course, if you do a quick Google, you would see that it means "rude in a mean-spirited and surly way."  But he was speaking more of being boorish.  But not quite that.  Really, I haven't found the word that comes closer to what he meant because he was saying that to complain in the situation was wrong because of all that he has in his life being David Tennant and being on "Doctor Who."  I often think of that interview and how that I love that he used the word "churlish," and that I love thinking about what word could better fit what he was trying to say at the time.

I love words.  Sometimes I love words because of how they sound.  For example, one of my word book words is "alacrity."  I love saying the word, but I also love the meaning; eager willingness is what I memorized.  Google tells you it means brisk and cheerful readiness.  I cannot decide which way of defining "alacrity" that I like best.  Both inspire the imagination ... at least my imagination.  The first two words I deliberately learned on my own, when I was in high school, were "plethora" and "microcosm."  I worked those two words into as many college essays as I possibly could ... and felt so very proud of myself when I did!

I love words.  I bond with my dear friend Mary over a love of words.  We've never really plowed through exchanging favorite words, but I know that any time I want to geek out over a word, I can share my excitement with her.

I love words.  I love the words I've learned and oft use them repeatedly, such as "fervent" and "frenetic and "fillip."  Of course, from there, you will see that I also love alliteration, but that is an entirely different topic.    Unless, perhaps, the point of bringing up alliteration is that I also love words about words.  "Alliteration" and "onomatopoeia" being chief amongst them!

I love words.  I spend the day plowing through a list of tasks, but thinking about words, because I have been struggling to find the right words to talk about my concerns with Monday.

In therapy, I often search for the right word that will strike a chord with my therapist.  I think she thinks me a bit odd, but most of the time when I hit the right word, she stops and takes it in, suddenly understanding what I am trying to say.

I love words.  But I also loathe them.  There are some words that are too ... big ... for me to speak or hear or even think.  I cannot bear to touch them.  And there are words that I would like to carve from my vocabulary (usually a vocabulary acquired from another person).  For example, I would like to eliminate the word "nasty" from my daily vocabulary.  I cannot think of an environment in which that word would be welcome in my ears.  It is spoken in my family.  If I never hear the word again, I will be deeply, immensely grateful.

Anyway, in case you haven't noticed, I love words!

Thursday, August 09, 2018

Dreading Monday...

I earmarked today as a day of rest, after yesterday's gazillion errands, even though I rested much of the afternoon and evening after the completion of those errands.  Tomorrow, I plan to fetch groceries, vacuum, dust, make cookies, and water the plants on the front porch.  That's quite a bit of laboring for me.  And then, on Saturday, my plan is to rest all the way up until Becky's plane lands.

I have been so bloody exhausted for eons now and I do not wish to be even more exhausted because I was doing too much before Becky comes.  I have a habit of doing so when visitors arrive, trying to ready the house and larder and yard and Fluffernutter.  Heck, because Becky has experienced the lavender-scented version of Amos, I am not even planing to give him a bath before she comes.  Less work is my motto this visit.  If I succeed, it will be the very first time I have not run myself down before a visitor arrives.

The main obstacle to this is that I didn't sleep much last night.  Mostly, I did not sleep from 6:00 when I fed Amos and took meds until 1:00 PM when I rolled out of bed.  Instead, I battled my fear about Monday's spinal tap.

I am very, very, very worried about one PTSD trigger.  I almost do not want Becky in there with me because I do not want her to see me melt down.  She did, once, I think. I mean, I think she saw me absolutely melt down the second night of the pacemaker surgery.  I very much would like for her to never see me that way again.  Plus, the trigger will be at the beginning, so I hate to set a negative tone for the medical torture session.

The second concern is how my pesky nerves will react.  I mean, needles often trigger them, sometimes for months.  Sometimes, the trigger is rather painful.  And, well, I just do not think it would be a good thing to jerk your body against pain when a needle is being inserted into your spine.

And, even if, somehow, those two Grand Canyons of obstacles are overcome, the spinal tap is going to hurt.  Lidocaine shots HURT.  Frankly, they can be just plain awful.  And then you still have pain when the needle is being shoved into your spine.  "Discomfort" is the word.  NEVER ONCE has "discomfort" been anything less than MIGHTY PAINFUL when it comes to medical procedures.

I screamed my way through my last spinal tap.  I know that this one is going to be different.  After all, the radiologist is going to be using a fluoroscope to ensure that he hits the right spot the first try.  But, still, it is not going to be a walk in the park.

I was a bit surprised this morning when I couldn't fall back asleep.  I tried and tried and tried, fetching fresh ice packs every couple of hours as I normally would.  But no shut eye came my way.  Just a few hours after the late night/early morning violent waves of nausea subsided and Amos awoke me for his morning meal.  Then fear.

And thoughts.
And more fear.
And more thoughts.


Wednesday, August 08, 2018

Errands and more errands...

Today was an errand day, an early errand day. I don’t usually do mornings, but I needed to get my blood work for the spinal tap done, and I had a free breakfast sandwich at Panera, which means getting there by 10:30 AM. So, I was super productive early.

On the way to my first errand, I called the new podiatrist for an appointment, because my left foot is getting worse and worse. I wonder if the prednisone was masking the problem. Now that I am only on 10 mg, the pain is back. When I have been sitting or sleeping, getting up and stepping on it is excruciating. But them more I walk, the easier it is.

I have been having a problem ever since I had the plantar fasciitis in March. That issue was cleared up, but then I had swelling and cramping and pain. The swelling has slowly ... very, very slowly ... gone down, but I still have some. I have trouble with the outside edge of the bottom of my foot and to top of the middle. And nothing that my GP and I have tried has really helped, except for the high dose steroids, which I cannot stay on full-time. Hence, trying a new specialist.

I was trying to get to October before spending the money on a specialist, but I am worried at just how much worse my foot is now compared to before I did this last round of high dose steroids. SIGH.

First, I went to the lab to get the blood work done for the spinal tap. Because I am charged for each stick (visit) rather than blood work order, I went ahead and did my kidney and thyroid blood work, too, even though the latter was a couple of weeks early. I don’t think that much matters much, since it will be four months since I last saw the Integrative Medicine Specialist.

After that, I fetched my prescription from Walmart. This is the final increase on the saliva medication. I have been worried about the money, because the price went from $26 a month to $63 a month.  However, I was able to pick up this month’s bottle for only $55. That is $8 less than the normal GoodRx price.

I had wanted to also pick up a few groceries for Becky’s visit, but I forgot to put an ice pack into the thermal grocery bags that I have. So, that errand will have to wait. Maybe we can go together after she gets here, but I would rather go ahead of time so that more time with her is spent playing games and watching streaming and eating tasty things whilst we do so.

Then, I headed to Target in order to get my flu shot. I went there because you get a $5 Target gift card for doing it there. I wanted to use that to get a second basket that I discovered would fit on the shelves of my new refrigerator freezer. Also, getting my flu shot meant that I could redeem a $5 Amazon gift card from my insurance company. That meant that I could use it to buy the magnesium that I need and free up $5 for grocery money for Becky’s visit! 

The baskets would help with the fact that the refrigerator is 2 cubic feet smaller than my last warranty replacement refrigerator, especially since I can put things on their side or stack them up without having to worry about them falling over.  The baskets also mean less bending down for those lower shelves, which means less pre-syncope for me.  And they makes it easy to just pull one out and dig for what I need ... or organize them, as these need to be.  

I just dumped the shelf contents in them, which are contents that were just dumped from the old freezer to the counter and then back to the new freezer.  I thought about organizing them and taking another photo, once I saw how they looked in this one, but that would be disingenuous.  I can always post one, maybe, once I turn my hand to working on the freezer.

Next on tap was to race over to Panera before 10:30 so that I could redeem my free breakfast sandwich. The Target pharmacy did not open until 10:00, so I was cutting it rather close. I ended up having to phone in the order to get it in under the wire and then pick it up when I got there.

Finally, I went to Goodyear to get some service on my beloved, ancient Highlander. You see, Becky and Gary had a problem with one of their vehicles. When I Googled their issue, I stumbled across this article about maintenance needed over time, not miles, when you have older cars that have low mileage. And it suddenly struck me that we have been looking at mileage and not time with my Highlander. It has been five years since the last maintenance and so I called yesterday to discuss the matter.

Today, the service manager, August, who has been working with me for four years, double-checked the brake fluid and then went through my service history. What would be due in December was the coolant service and the fuel injection service. Since I have the money in the Highlander savings account, I wanted to go ahead and get it done.

The call to Goodyear was a bit difficult for me because the serviceman with whom I have been working since I moved here retired. Jim was amazing. The first two (okay three) years, all I did was weep when I called and came in. I wept everywhere. I was so sad and anxious and worried and afraid … a real mess. Jim never treated me as anything but a normal person and was patient and gracious and kind to me. When August came, it was difficult for me to learn to trust him, but I have. I depend on these men to advise me and guide me with my car, working as hard as I do to save money whilst taking care of it the best way that I can. On the call, since August was gone, I had to talk with Josh, who is the new Jim.

Josh was sweet. After he closed for the day, he called August at home to say that I would be coming in since Wednesdays are his day off. When I walked in today, I asked for Josh and was distressed that he was gone, but August greeted me and said he was all ready. The hard thing is that I don’t remember what people look like. Not even Becky. Not without looking at photos. So, I never remember him. But he remembers me. And my beloved Highlander. I am blessed mightily by him and by the service I get at Goodyear.

My next car thing is the timing belt. It is due at 90,000 miles, but that would be 10 more years at the rate I am driving. Since my vehicle is 14 years old, I am planning on doing it soon. But it is a HUGE chunk of change. It might actually wipe out my savings account. I am saving $40 a month for the Highlander. I think that I need to be saving more. But where would that more come from? Right now, I don’t think I could increase anything until 2020. Or rather December 2019. At that point, I would be done with the television, fillings, and phone payments. But that assumes that I don’t have more medications, which is probably a foolish assumption. SIGH.

So, that meant that I came home, exhausted, at 12:30. Amos was very, very happy to see me again. He strongly dislikes not going with me. And, to be honest, I strongly dislike not having him with me. Taking him to therapy with me has made separation harder for both of us.

The rest of the day has been a blur of naps and wakes, snuggling with Amos during both.  I did manage to walk on the treadmill and to make my next batch of my beloved Baked Oatmeal.

What made my errands easier was Becky. She is so very merciful for hanging out on the phone with me whilst I run errands. She had a long list of To-Dos herself and managed to get a few things done whilst talking with me. However, once I got to Goodyear and settled down at their new workstation, we parted company. How very thankful I am for the blessing of her friendship and the blessing of cellphones and unlimited calling!

I despair, often, of how much misery I must endure, the illness and the suffering. But I am working to be cognizant of the myriad ways that God has provided for me and to give thanks to my Good Shepherd in that moment.

Tuesday, August 07, 2018

Life in pictures...

I dressed up today, for no reason.  I miss the symphony.  I miss having a reason to wear my flowy skirts and my boots.

Do you think that if I slept in my boots that I wouldn't have the night terrors?

I am very much enjoying plucking eggplants out of my raised bed near the haven and cooking them up for dinner.  This was a simple sauté with homemade ranch dressing, which is so very satisfying.

I brush the eggplant with olive oil, thoroughly, and then sprinkle on some of Becky's seasoned salt.  I do the same to the other side.  And then I place them in a dry, hot pan.  I find that, since the eggplant soaks up olive oil very easily, that it is better to put it on the eggplant directly than in the pan.  At least for me it is.

What is wrong with this picture of my crabapple tree?

Look in the center.


Yes!  That is a cucumber hanging down there!  I harvested it, along with 16 others and took them to my therapist's office today.  Somehow one of the vines made its way into the tree.  There is another cucumber even higher up.  I will need a ladder to harvest it when it is ready!

I came across this today.
It is giving me much food for thought.
I am arrested by it.

Monday, August 06, 2018


Every other month, I have been sending out notecards to friends and family and folk whom I like to let know I am thinking of them.  July was to be one of those months.  However, I could not gather my brain enough to do so.  Much of July, I haven't even read or watched television when I am awake.  Instead, I have sat and tried to gather my brain rather unsuccessfully.

It really blows my mind than, when not napping, hours can pass without my doing anything.  A little bit of thinking.  A little bit of app game playing with friends.  A little bit of household chores.  Very little bit of the latter.  Normally I am a streaming fool, throwing myself into viewing as a way to escape nausea, presyncope, blood sugar crashes, and other bodily ills.  But not for a long while now.  Instead, I am trapped in my exhaustion.

Today, through a gargantuan effort, I was able to get all of my note cards written and mailed.  I also boxed up and mailed a dozen of the worlds most bestest cookies (Brown Sugar Oatmeal) to my brother's house, so that he, my sister, and my nephews can enjoy them when they arrive their visit this week.

I confess this last mailing had more spelling errors than in past ones and have some cards where I did not take advantage of both blank sides.  I was doing good to just put pen to note card.

Today, I also started the fourth dose of the saliva drug for the first time.  I am hoping that taking it as prescribed, finally, will make a difference in my teeth.  It has been a brutal few months, trying to get used to this drug.  Between it and the other drug I am trying again for nerve pain, I now have severe hyperhydrosis from my head.  Fun times.

If I do anything the slightest bit strenuous for me, I start sweating profusely from my head.  I really ought to wear a headband all the time, but I either forget or  I am leaving the house and I refuse to perpetuate my personal revival of the Richard Simmons look outside my house.  I do wear one whilst I am on the treadmill and cooking and house cleaning and just about every other hard thing I do around the house.

I would much rather not sweat profusely from my head, but I do not wish to stop either of the medications.  I do, however, dread leaving the house lest I end up sweating all over someone assigned to me.

Today, I struggled with my vision much of the day.  Dysautonomia has been messing with my eyes for a long while now.  It is truly disheartening to have good days and bad where your vision is concerned.  You want the good days, but they are depressing for all the things that you can see clearly.   And then there is the fact that the saliva drug is affecting my vision now that I am finally at full strength of the medication.  The nausea is finally easing, but the vision issues are slowly increasing.

Today, I called the hospital to have them correct my bill once again, but the correction was in its favor.  Every few months, when comparing my EOB (explanation of benefits) from my Medicare insurance company and the hospital bill, I find mistakes in billing.  However, this time, it took me a few days to work up to calling.  You see, I had to tell them that the money owing for the lung function testing from May was not a $5 co-pay, but was rather a percentage the total amount owing.

Sometimes being ethical stinks!

Sunday, August 05, 2018

Two peas...

Amos has been really clingy of late, crawling into my lap and following me all over the house.  I would think that, perhaps, he is being clingy to comfort me.  However, he has also been crawling beneath my weighted blankets and stuffing himself behind my back so that I am squishing him.  So, that tells me that it is not my upsettedness that he is trying to sooth.  But I do not know what is bothering him.

Would that it were I could talk with Amos.

Meanwhile, I do not mind the extra attention from my beloved Fluffernutter.  I mean, sometimes, I stop and worry a bit.  But mostly I just enjoy his presence so close to me.

In bed, he has started curling up at my back.  If I roll over, he then leaps over my stomach to curl up on the other side.  It sort of cracks me up that he is so intent on sleeping that one way right now.  But I also admit that it is very comforting because he adjusts his body so that it is sort of atop mine a bit, with the result that he puts quite a bit of pressure on my back.

We really are two peas in a pod at times.

Saturday, August 04, 2018

The keep silent part...

I want to write about something that is inordinately uncomfortable.  But the longer I keep it hidden, the harder it is on me.

If it can happen once, it can happen again.
If it happens twice, then I think that is my future.
I despair over my future.

I am not being pessimistic.  I am looking at the patterns in my life, particularly in my body, and making a logical supposition.  The former is what I have heard from others, which is ever so hurtful.  The latter I have heard from my therapist, who, as a former nurse, understands.  For that, I am grateful.

The pudendal nerve runs down both there right and left side.  It is my left nerve that is troublesome.  And the pudendal nerve branches thrice on each side, controlling functions in your pelvic region.  For me, my symptoms have all been anal.  To be blunt, when I have a flare, the pain feels as if something is being inserted into my backside.  It is pure torture, because it reminds me of childhood sexual abuse.

It is stool moving along my colon that triggers the nerve.  Until I actually go to the bathroom, usually, the flare does not stop.  But, most often, the nerve is triggered well before it is time to actually go.  So, I have 90 minutes to two hours of pain ... or thereabouts.  Pain and flashbacks.  After I go, it takes about a half hour for the nerve to calm down.

I am filled with horror.
And shame.
And I want to die.

Each and every time.

Baclofen—thank you Jesus—added to the increased gabapentin, once I got to the max dose, greatly reduced the frequency and intensity of the Trigeminal Neuralgia flares.  And the baclofen greatly reduced the frequency of the Pudendal Neuralgia flares.  But they still happen.

And they are worsening.
They are worsening because the pain has expanded to other parts of my body.

Thursday, I had a flare that triggered such pain that I was absolutely convinced that I had another ovarian rupture.  I was trying to decide if I should go to the ER and kept putting it off because I just don't want to be in an emergent situation and needing to be examined.  I am just not ready for that.  It was at the very height of the pain that it struck me what was happening.  It was stool and that damn nerve.

The reason I knew it was because the nerve has also started affecting me in a third way aside from pelvic pain.  It is terribly difficult for me to even write this, because it is something about which I do not speak.  However, the pudendal nerve can also affect ... a flare can trigger the response a body has expressing pleasure after lying with another.

The unspeakable about sexual abuse is that your body can betray you whilst you are being abused by that physical response.  It is the only time that I have experienced such.  It is not something that I care to experience again.  But, twice now, a flare has triggered that response in my body.  Started it, I suppose is more accurate.

This second time was worse in that it confirmed to me that things were changing with my pudendal nerve.  I cannot fathom a life being tortured this way.  Because, for me, it is torture.  The sensation and the flashbacks.  I want neither.

When I think about having to endure such sensation on a regular basis, along with the pain of the flare, I just ... I feel bleak and lost in a blackness that I must escape immediately.  It took everything, everything not to immediately effect my departure from this life the first time it happened.  And the second was bleaker and blacker.

But there is this tiny part of me that clings to the reality that I have been unbelievably blessed when it comes to Pudendal Neuralgia.  Most folk do not respond as well as I have to medication.  The Pudendal Neuralgia support group I'm a part of on Facebook is one of the saddest places on earth.  The suffering is so great.  The frantic and frenetic search for help.  The desperate procedures some are willing to risk.  Folk have constant burning, stinging pain.  They have constant ... sensations.  They have terrible bladder dysfunction.  They cannot sit at all.  They have an agony that most people cannot even begin to comprehend.

You cannot compare suffering.  Mine is enough for me.  But I can appreciate that I have been blessed by my response to baclofen and gabapentin.  I have been blessed.  And spared.

Still, I would have said that I could not endure more than the anal pain.  And now I have more.  And I cannot really speak about it.

Friday, August 03, 2018

To be normal...

When I graduated from my Ph.D. program, I bought myself three presents:  Kashi (my first puppy dog), a rare book by Gene Stratton Porter (Kashi promptly chewed on the spine), and what I called a "big" bed.  Up until that point, I had slept in a twin bed.  I chose a full bed, primarily because that was the size that had a GREEN iron frame on clearance because it had (unbeknownst to me) the wrong bolt holes on one side of the headboard.

Even though I have, since 1995, slept in a full bed, I have slept only on one side, taking up even less space than my twin bed!  I decided that I wanted to learn to sleep in the middle of the bed.  In part, I decided so to give my beloved puppy more space on the bed.  In part, I bought the bed for myself and long to be more ... normal.

I sleep in fear.  Always.

In Alexandria, I slept first on the left side and then on the right side.  This is because I slept on the side furthermost from the door.  Once I got Kashi, I slept with a something between me and the door. I believe this is because of the sleep paralysis I endure with night terrors.  You lie there in bed, awake and yet still caught by the terror of the dream.  It is hard to endure because you know you are awake, but you are still in the dream.

Amos is loving having all this extra room in the bed.  His preference is to sleep by the front window, which was my side of the bed.  Since I slept on just a sliver of the mattress, there was no room for him.  Now, he can stretch out to his heart's content.  And he can travel back over to his side of the bed and stretch out there.  Only his greatest preference is to press his body up against mine, so he has been sleeping just off-center.

It has been a hard transition for me.  I find myself gravitating to the left again.  And I find myself staring at the door in fear.  And then I feel such shame that fear still binds me so.

I will say that I have enjoyed being able to roll over to the left without falling off of the bed.  And I have finally been able to sleep on my right side after two and a half years—darn that pacemaker! I have not particularly used more space, because I now sleep, primarily, with my knees drawn up to my shoulders or at least to my waist.  Doing so flattens out the small of my back and means less arthritis pain.  I also will sleep a flamingo.

Whole decades of my life had me standing like a flamingo, on leg tucked up against the other.  I am not sure when I stopped doing that after I moved here.  Or perhaps before I moved here.  I actually do not remember the last I did, but it was probably around the time that I was getting diagnosed with dysautonomia.  Balance has become such an issue with me.  Try standing with your eyes closed and your feet together.  I do that and bad things happen.  Think for a moment.  You usually have your eyes closed washing your hair, right?  You cannot do that if you are chronically ill.  I stand and close my eyes in the shower and chaos will follow as I tilt my head back to wash or rise and I realize that pre-syncope has started.

But flamingo standing?  I started that as a young, young child and kept it up ever since.  Well, until very recently when I gained all that weight from the gabapentin.  And until I started having less and less control of my balance. I miss that stance.  It anchored me.

Ah, but I digressed.

It might seem a strange thing to be trying to learn to sleep in the middle of the bed.  But I do hunger to be normal wherever possible. 

Thursday, August 02, 2018

Mission accomplished...

My beloved Fluffernutter was enjoying the fan after coming in from being outside.  It is so funny ... sometimes he curls up into the smallest ball and sometimes he stretches out into this impossibly long version of himself.  He sure does love the back of the sofas!

I've given away 42 cucumbers and eaten many, many myself and yet here is another colossal haul.  Yes, there are still more growing on the vines.  I plan on taking the majority of these to my GP's office on the morrow.

I've been enjoying harvesting the eggplants in my raised bed.  I cannot believe I grew some the very first time I tried.  Thus far, I've had them sautéed, breaded and sautéed, grilled, and roasted with basil feta and balsamic glaze (above).

I think that my mincing skills have become rather finely honed.  This is fresh rosemary, thyme, and sage for the 15-bean soup.  Yes!  I met my goal of getting the soup and the Chipotle Chicken Chili made today!  Whew!!

Of course, whilst cubing the smoked ham, I learned that my santoku knife in the photo above is much, much sharper than I thought it was.  In the blink of an eye, I sliced through two of my fingertips.  Holding something in your palm as you cut it is pretty much the most stupid of actions you can do whilst you are cooking.  It is my most favorite of knives.  I do love my tomato knife and my boning knife, but the santoku serves me well each and every time I use it.  Well, except for today, perhaps.

Aside from the cooking, I also worked on a few tasks:  made the follow-up appointment with the neurologist (Why didn't they do that when the spinal tap was scheduled?  I have to wait five weeks!); called the hospital billing department and got one of my claims properly re-billed; tried twice to return the call from a nurse from the radiology department; restocked my stashes of toilet paper on all three floors; picked up the poop in the back yard; took out the recycling and the trash and set out the bins for tomorrow; entered the new router's password into my Kindle so I could update it; and repaired the wood brace piece of the library table that I have in the dining room.

One of the ways that I try to stay on top of things is to send myself emails, one per task, with the task as the subject line.  I delete them once the task is done.  Right now, I have five outstanding tasks in my inbox.  More missions await!

Wednesday, August 01, 2018

Sleeping day...

My goal for the morrow is to make Chipotle Chicken Chili and my 15-bean soup.  My larder in the basement freezer is getting a little low.  Once I get to the grocery store, I also plan to make lentils.  Today's goal was to thaw the meat for both recipes and to set the beans to soaking in beer.  A small goal because it was a sleeping day.

I think that is what I am going to call them: sleeping days.

I have been rather frustrated at just how exhausted I have become.  I have also had a terrible time with getting up after sitting on the sofa for an extended period of time and walking up the stairs.  I battle pre-syncope most of the time. And, for whatever reason, my pacemaker is not kicking in when I do.

But I have decided that I need to focus on the days when I am not so exhausted that getting out of bed is practically the only accomplishment of the day.  Even on single or double nap days, it is has been hard to be productive.  SIGH.  On those days, though, I am thankful for being able get things done, around the house and out in the yard.  For I am the only one here to do what needs to be done.

On the sleeping days, I am working on not punishing myself for being so exhausted.  I get so very frustrated for having to nap again when it hasn't been long since I awoke last.  I end up weeping and wailing and gnashing my teeth ... before falling asleep once again!  I feel useless.  And unworthy of living.  And all sorts of other dire and negative thoughts and feelings and ideas about myself.  I am working on not doing that.

It is hard.
But there is nothing else that I can do but languish on one of the sofas.

I hope that the morrow does not bring another sleeping day.  I hope that it is a day for cooking and spending time out in my haven.