Thursday, August 30, 2018

Being a zebra...

Sometime around now, a week ago, I got a tickle in my throat that turned into a raging sore throat that turned into uncontrollable coughing in just 18 hours.  I went to the doctor, received a prescription for antibiotics, and came home.  Saturday and Sunday, I got worse, but Monday morning the antibiotics brought me to the proverbial corner around which I turned.

I am amazed at just how well I am, cough-wise, given where I was.  But I am also so very, very, very, very, very, very, very exhausted.  I can barely do anything without needing a nap afterwards.

I saw the integrative medicine specialist yesterday, but it was the first visit I left a bit disappointed.  I talked about the incessant, overwhelming exhaustion that I have been battling for well over a year now, but more so of late, illness not withstanding.

Just as I did with my GP, I talked about how I fall asleep sitting up now.  I feel better after a nap, but only for a few hours.  When Becky was here, the adrenaline of my giddiness over her visit helped me stay mostly awake during the day, but I have been sleeping ever since she left.

Very little have I accomplish, although I did systematically organize and downsize all of the non-kitchen drawers in the house.  I want to do more, to address the basement and the attic once more.

But I was too exhausted.
And then I became ill.
And I am even more exhausted.

Being chronically ill takes you out of the rhythm of the rest of the world.  Not working means you no longer count the days to the weekends or mark the days until the next holiday.  At church last night, the pastor mentioned that it was Labor Day weekend this weekend.  Had he not done so, I am not sure if I would even know that.  I mean, I have not been on social media too much and I have not been streaming or watching television.  Aside from a couple of movies, I have not watched anything else since Becky left.

The house is so very silent.

Being out of the rhythm of the rest of the world makes your days and nights long.  When they are mixed together by the need for excessive sleep, life becomes almost unreal.  At least to me, it does.  I feel like a non-person at the moment.

An exhausted non-person.

I was disappointed in talking about the exhaustion because she asked if I wanted to do a sleep study.  I DO NOT HAVE SLEEP APNEA!  When you have a chronically ill patient, you really are supposed to be looking for those zebras!!

Sleep is ... complicated.  I sleep, on average, 90-120 minutes at a time, before the ice packs melt enough to then have pressure on the nerves on the back of my head and then I start getting sick and then I wake.  Waking ill over and over and over during the night makes for a long night.

I wake, stumble out of bed, battle presyncope, go to the bathroom, trudge downstairs, fetch fresh icepacks, and stumble back upstairs and into bed.  Often, I am asleep nearly before I finish arranging the icepacks on my pillow.  But sometimes I read a little bit just because I haven't been able to read much with all of this falling asleep stuff.

I also battle violent waves of nausea, cold spells, blood sugar crashes, and writhing.  So, in between those sleep segments, I am often awake ill.

When someone tells me that I would feel better if I would get more sleep, I want to punch him in the face.  When someone tells me that I would feel better if I would go to bed on time, I want to punch him in the face.  When someone tells me that I would feel better if I would go to bed earlier, I want to punch him in the face.  When someone tells me that I would feel better if I would get up earlier, I want to punch him in the face.


It is not that sleep is my enemy, it is that my body is attacking itself, oft making sleep this near impossible challenge.  SIGH.

There are medications that you can take for exhaustion.  I am not actually looking to take yet another mediation because of the expense, but I am wanting to have a discussion about when is the time to consider medicating for exhaustion. I mean, my quality of life is poor enough without struggling to stay awake for more than a couple of hours before falling asleep whether I want to or not.

All I get, though, are discussions of sleep apnea, narcolepsy, insomnia, and sleep habits.

I do not have sleep apnea; I am chronically ill.
I do not have narcolepsy; I am chronically ill.
I do not have have insomnia; I am chronically ill.
I don't have poor sleep habits; I am chronically ill.

And I can have 10 hours of good sleep and still wake exhausted because I am chronically ill.


In medical school, students are taught to not look for zebras, but instead to think of horses.  The idea being that the exotic is not common.  Stick with the basics.  But I live in a world of the exotic.  I am a zebra.  It annoys me to no end when my doctors, who know full well I am a zebra, talk about horse issues, and ignore the reality of life as a zebra.

I am, at the moment, a rather exhausted zebra who would really like some help with that.

I see the cardiologist on Tuesday and then the GP again on next Friday.  Over the coming weeks, I will also see the rheumatologist, the pulmonologist, the neurologist, the ophthalmologist, and the podiatrist.  With the exception of the latter two, I am hoping one of those doctors will hear me and remember my stripes.

Tuesday, August 28, 2018

Not much...

I awoke today and worked on my shopping list, since my budget has cycled and I will be out tomorrow.  Making my list is something that now takes me many days, because I price compare between Walmart, Target, and Meijer.  It is mostly finished now, although I remembered I have a $10 coupon at Meijer, so I need to switch a few items to there even if they are priced slightly higher.

I then walked on the treadmill.  Being ill, I am sure that is not the best decision, but I just cannot explain why I have to walk everyday.  If I stop, I just might not start again.  It is so very hard.  I did back the speed down just a tad.

Then, I had to take a nap!  I was that exhausted after doing so little!

I awoke after 5:00 and fed Amos.  Then, I went up to take a shower.  That exhausted me, but I did manage to get something to eat afterwards.  Next, it was back to the shopping list to figure out what get at Meijer with the $10.  I have almost all of it spent, but not quite.

Now, just 8:16 in the evening, I am fighting falling asleep again.  Sometimes, I try to hang on, but most of the time it is best to just give in and sleep some.

I am definitely better.  I mean, my throat was WRETCHED Friday and Saturday and it is now just peachy.  I am still coughing and coughing up gunk every now and then.  I see the integrative medicine doctor and I figured that she can listen to my lungs and tell me if I should go back for stronger antibiotics or wait out these.

I had my first Trigeminal Neuralgia flare since upping the duloxetine.  That is the side effect I have been dreading the most.  For some reason, it triggers them rather frequently before easing off.  They are brutal, brutal pain.

Awk.  I just cannot stay awake.  It is so weird to fall asleep typing because what I end up saying makes little sense.  Maybe one time I should just leave the garbled text!  In this case,  I have corrected my words and will sign off.

Monday, August 27, 2018

Misery upon misery in my body...

I feel like I might be feeling better.  Does that count?  For me, the key is that I was not coughing and gasping all night long and only used Chloroseptic spray once.  The bottle has gotten rather low from Friday and Saturday nights.

The pain in my throat and the dry scratchiness that was triggering the cough that then dropped into my chest are gone.  So, I am hopeful the antibiotics are doing their thing and doing it well.

Meanwhile ...

Today was the first day of increasing the dose of duloxetine.  When I tried taking it a second time, two months ago, the first two weeks were rather brutal.  Only the hope of easing the shocking in my hands kept me going.  The excessive sweating is really the only symptom that has lasted, aside from some extra dryness in the morning when I take the pill.

Today, well, the nausea came back full force.  And I had forgotten that it is a nausea that my beloved Zofran cannot touch.  It eases many hours later, though.  I have a crushing headache.  I am dizzy.  And the clenching has returned.

I am having constant jaw pain from the last spate of clenching.
I am not looking forward to having that escalate.

I was too chicken to try it last time, but I read that benedryl can help counteract the clenching.  I am going to try it tonight.  Maybe.  I absolutely loathe the drugged feeling that I get from benedryl.

I am also telling myself that I just have to get through the next two weeks.  Then, hopefully, the side effects will ease again.

Meanwhile ...

I am rather miserable.

Sunday, August 26, 2018

Katharine the heroine...

The day has passed with a whole lot of coughing and not much else.  Thursday about midnight, I had a bit of a tickle in my throat.  By Friday afternoon, I was coughing up my lungs!  I am hoping that the antibiotics will be kicking in by the time I crawl out of bed on the morrow. Most fervently hoping.

My goal was to get Friday's laundry done, and I accomplished that.  Three loads washed, dried, folded, and put away.  One of the loads was the bedding from Becky's visit.  Seeing her sheets got me all verklempt. But I soldiered forth and finished.

Other than that, I had a few naps and have sat huddled on the sofa.  Again, it was another day of no streaming.

Being ill when you are chronically ill STINKS!

I did learn that it is Katherine Johnson's 100th birthday!  Have you seen "Hidden Figures" yet?  If not, rush out and buy the movie and watch it!  She calculated trajectories by hand!

NASA wrote this lovely little article about her and the lessons she's learned over the years.  Katherine is an inspiring and heroic figure in the history of both space flight and NASA.

When Becky was here, we watched that movie.  For me, I had memories of my sister watching with with me over the phone, whilst telling me about the movie in between, especially stuff.  I love the movie, but I also know my father, who spent his the bulk of his career in the space flight program. Never more have I missed him than this day.

I sent the tweet and article to my brother.  He reminded me to send it to my step-mother.  She said that she went out and got the movie as soon as it came out because she knew that's that my father would do.  She is right.  He would!  SNIFF.  SNIFF.

Saturday, August 25, 2018

Catching up...

Another week lost!
But maybe not.

I had an idea to post the "life" things from Facebook here, at least, since I cannot go back and look at Facebook by date.  Or, rather, I at least do not know how to do that.

Last Saturday
Becky helped me tie up some loose ends before she left today. She took apart the top and front of my microwave in order to find out how to replace the interior light bulb. She fixed the crooked part of the back of my hair from when I cut it all off. She helped hold Amos so I could cut his belly hair that had gotten to be quite a mess. And she helped whilst I made basil paste.

Becky also changed the sheets on her bed and took the laundry to the basement. And she made a million trips to the basement so I wouldn’t have to later.

On the way home from the airport, I fetched a new halogen bulb. So, the dark grey interior of the microwave that has been pitch black is now brightly lit once more.

I miss her.

I’ve napped and I’ve cleaned out and organized four of the drawers in the dining room built-in. I think I shall use my missing-Becky-post-visit funk to organize and downsize in my basement and attic over the next week.

Part of the reason I started organizing and downsizing again was that my sister came back from visiting my brother, an avowed minimalist, all fired up to downsize her life.  I was a bit jealous and thought about how I've crept up in "stuff" in the attic and the basement.  So, I want to tackle those areas. The attic will have to wait until the weather changes to fall cool breezes.  However, when I am better, I can tackle the basement.  Wanting to DO SOMETHING, I started in on the drawers.

Last Sunday
The GREAT SLEEP has begun. I don't mind, for I would rather have been awake whilst Becky was here. Without the giddiness of her presence, I cannot escape my usual exhaustion. I just awoke a little over a half hour ago, took Amos out, tortured myself on the treadmill, and am now about to fall asleep again.

You know, sadly, Becky does not care for asparagus. So, when I am awake, I get to start eating all of this. What do you think? One meal? Perhaps two?

Being all exhausted, my drive to work out my post-visit-missing-Becky-upsettedness by downsizing and organizing has been a bit stymied. However, before I fell asleep last night, I organized and downsized the contents of my purse and of the basket I carry to and from my bedroom each day.

Baby steps when in the throes of post-visitors GREAT SLEEP.

One of the things I find interesting is just how much water the asparagus drinks up when stored in the refrigerator this way.  If you are going to have them in there for more than a week or so, it is best to take them out and do a fresh cut on the bottom, taking off a wee little bit.  I've had asparagus last three weeks before it started to go bad, primarily by drying out.


I zonked out for a couple of hours. And already I am thinking about another nap. Only, right now, I am working up to taking a shower.

After Nap No. 2 today, I organized and downsized the main shelf in the bathroom, the top two drawers (the toilet paper, soap, and spillover medicine drawer was a total mess), and the top drawer in the servant closet.

I believe very strongly in the mantra of "A Place for Everything and Everything in Its Place." This helps with Visual Rest, it makes finding things easier, and it facilitates straightening up. It also aids young children participating in the process, especially when they have been involved in creating the places in their bedrooms. Back in the dark ages, when I babysat, I was oft called back help organize a child's room and teach him/her about "A Place for Everything and Everything in Its Place."

Anyway, as to my drawers, even in the most ... full ... drawer, I still crave Visual Rest. I achieve that by having it organized. However, when you are in and out of drawers, over time, they become a tad disorganized and visually unrestful.

But, also, with "A Place for Everything and Everything in Its Place," over time, you oft find better places or additional ways to group items. So, your places change.

Thus, whilst I am to weary to tackle the basement and the attic where I would like to do some re-evalutation and downsizing, I am making headway on ensuring all of my drawers are put back to right.


I got my shower in, as well as organizing and downsizing the bottom drawer in the bathroom and the bottom drawer in the dining room built-in.

The good thing about "A Place for Everything and Everything in Its Place" is that you always know where something is. The bad thing about "A Place for Everything and Everything in Its Place" is that if something is not in its place, your systems can get messed up.

For example, I like to have Spares for Key Items in my house, both grocery and household items. When I run out of a Key Item, I grab the spare and then put that Key Item on my shopping list to pick up some time in the near future.

One Key Item for me is real maple syrup, because I use it in the baked oatmeal recipe that I make every 18 days so I can have a muffin for breakfast. Before Becky came, since I knew we would be going to COSTCO, I checked to see if I needed maple syrup. The space where the syrup spare is supposed to be was empty. So, I used precious grocery money to buy the spare.

However, when I was working on the drawers in the dining room built-in, I found the syrup spare NOT in its place. So, at the moment, I actually have two syrup spares and could really, really, really use that $10.97 on groceries for the rest of the month since I now have just $3.32 left to spend on EVERYTHING this month.

But, for the most part, my "A Place for Everything and Everything in Its Place" and my Spares for Key Items systems work rather well for me.

I am feeling more settled knowing that the main (non-kitchen) drawers in my house have now all been organized and downsized this weekend.

I wanted to write a blog post about "A Place for Everything and Everything in Its Place," but this post  sort of hits the highlights.

Maybe I will try to flesh it out more.
When I'm not so bloody exhausted.

This past Monday

Holy cow! I sure did neglect the front bed!! Here I was oozing pride at how I’ve kept up the weeding and the front bed was FULL of weeds!!

Isn’t my beloved Fluffernutter adorable as he waits for me to finish torturing myself on the treadmill?
PS. I HIGHLY recommend NOT trying to take a photo whilst walking on the treadmill.


Violent waves of nausea. Today is a No-Zofran day. SIGH. Only two more of those to endure. Wednesday and Friday.

NEVER AGAIN am I agreeing to take medicine that keeps me from being able to have my beloved Zofran. If I start talking about maybe doing so, please STOP ME from caving.

I shall greatly miss the eggplants in my back raised bed once they are finished. I forgot there was still some broccoli in the refrigerator, else I would have had a trifecta of vegetables. I am not a big fan of vegetables, but the ones I do eat, I adore in great measure. I have not had 15-bean soup in eons. It is such a tasty recipe of mine. Of course, I had to take a nap after my dinner, so exhausting was preparing this meal.


Today, I weeded the front bed and harvested one eggplant and 18 cucumbers. That’s it.

In order to accomplish that small amount of labor, I napped three times and am falling asleep for a fourth time.

This [an article] enrages me. The jury, not the judge, set the sentencing. How folk can believe that a doctor RAPING a sedated patient does not deserve jail time is beyond me. His wife said they have suffered enough from this. WHAT ABOUT HIS VICTIM?

I can tell you that when you are assaulted in a hospital it is difficult to EVER feel safe again. That it was a doctor and whilst incredibly vulnerable makes trust in the medical world near impossible.

Sexual assault is NOT sexual misconduct. It is a crime against the body, mind, and spirit. For many, sexual assault is NOT a one-time experience, but one that must be endured many times before healing can come.


PRAYER REQUEST: I have been trying to budget more for medical expenses ... or rather acknowledge that I need more for them and simply have less for everything else.

I switched to a new system for just that line item. I increased the budget to $250 (does not include premiums) and made it a formula. If I spend less than that, I put the balance into the medical savings account that I created when I was given medical money in April. If I spend more than the budget amount, then I deposit the difference back into my checking account from the savings account.

In my brain, I call this process "sweeping," moving money back and forth manually. It is the only savings account that does not have an automatic deposit. This is primarily because I pay so many medical bills and expenses throughout the month it doesn't make sense to do an automatic deposit and then turn around and put that money back into checking.

I started this system in June, so I have just three months of the sweeping. However, I already have all my expenses for September entered into my Number Crunching spreadsheet. That lets me know that, barring anything else, September's medical expenses are at $516.63. I am fervently hoping the spinal tap bill doesn't post until October's statement.

If you are doing the math, that is more than double the budget for that month and, because I don't have many months under the sweeping system (also think of it as even greater austerity for me), is more than what the balance will be in my medical savings account.

Now, October and November will be months where I will be sweeping a goodly chunk of change from checking into the medical savings account. Or it would be if the spinal tap didn't happen. So, whichever month that bill drops will be the month I hope the lack of specialist visits helps pay for the spinal tap.

In a nutshell, I am very much concerned about paying all the medical bills in September.




"I began to realize that the Psalms were filled with words from desperate, sad, hopeless, and confused believers. They had words for me that I didn’t know I needed. What was a deeper, more surprising comfort was that they were inspired by God, who knows what men and women need to say when we don’t know what to say. God knows how desperate we can get and has provided words for us to say in those times. “Here,” he says, “use these words. They’ll help.” Yes, the Spirit groans for us when we lay wordless like a frail leaf, but the Psalms provide words, language, for when our souls need to reach for expression. “My soul melts away for sorrow.” Psalm 119:28; “I am worn out from my groaning.” Psalm 6:6. “My life is consumed by anguish and my years by groaning; my strength fails because of my affliction, and my bones grow weak.” Psalm 31:10. “Let not the deep swallow me up.” Psalm 69:15. “For my soul is full of troubles … I am a man who has no strength.” Psalm 88:3.

"These words can feel like emotional handlebars as we try to make sense and grapple with our experiences."

[From this article]

LOVE ME some psalms.

I really do love how the author talked about the psalter.  He totally get it.  

Someone asked for topics if addressing seminarians.  This is what I suggested:

When you are struggling for words to speak to a broken person, read aloud psalms with him or her. They are filled with the gamut of human experience, including anguish, doubt, and despair. They show how intimately God understands even our brokenness and thus provides words that we can pray in the darkness of our lives. You don’t have to think up words to say in the face of brokenness; God already has.

There is such a sufficiency to the Word of God that, I believe, is oft forgotten or overlooked in the effort to provide seemingly "better" words.  Only there are no better words that those which show us how intimately we are known and loved by our Creator.


My first truly abnormal result has a recommendation to repeat the spinal tap. It is the cancer test. I had red blood cells (RBC) in the sample. Since 4 vials were taken, each vial should have been tested for RBC. They were not. I am not looking forward to the neurologist’s recommendation for this. And I’ve got 4 more weeks to go before I see her. Even more now, I want the blasted MRI!!!!


I harvested another eggplant. [Try not to be jealous!] Whilst doing so, I discovered a few more started, so, if they all finish growing, I will have eight more lovely meals. Whatever will I do when I cannot pluck an eggplant out of my raised bed and serve it up on my plate??

I counted only 5 more cucumbers (although I dropped another 16 at the doctor's office yesterday). The vines have all turned yellow, and being exhausted from harvesting them and being ill, I did not try to treat them.

I like being able to take them to those who are caring for my body, but I think, next year, I will only plant three of the six-pack and try to find someone else who would like to grow cucumbers.

I would like to use the space to try summer squash one very last time, even though I am basically a summer squash murderer.

To be honest, this part of me wants to rip out the daylily bed and make a third raised bed. However, the whole point of having just one raised bed (and I already have a second) was not to overwork myself.

But Gee Willikers! Is it ever BLOODY AMAZING to harvest and eat your own food and use your own herbs!!!!


I am trying to go to church again tonight, but I already forgot and took a shower and got into my pajamas. If folk go to the midweek service in shorts (scandalizing my good southern Christian soul), could I just go there in my pajamas??????????


Girding my loins for my attempt to have the Word of the Lord in my ears two weeks in a row.

I’m here. Quaking in my boots. Wearing Annie’s skirt for courage.

Flares of dysphasia (disruption to swallowing) frighten me. They feel like you are choking, even though you are not. You have to force your mind to concentrate on remaining calm even as you are panicking. You have to put your entire being into keep trying to swallow until the process actually starts up again. And you have to do this in the face of great pain because having food stuck in your esophagus becomes more and more excruciating the longer it takes to get things moving again. In short, swallowing is such a primal act that when you lose the ability the world begins to unravel around you, making enduring the pain and the panic increasingly difficult.

I hate it.

I especially hate it in the early morning, when it is dark and my loneliness is magnified tenfold.


SIX BAD SPOTS ON MY TEETH!!!!!! I’m brushing four times a day (except with visitors here), flossing twice, using fluoride rinse twice a day, and taking expensive saliva medication four times a day. And Sjögren’s is still RAVAGING my mouth.

Another $613 today all in preventive stuff!

It was sobering the change in my dentist.  I had vacillated something fierce about spending the money on x-rays because she thought it would be fine to wait the year.  I was all for that, but for the fourth cavity that I discovered and had filled in July.

She said that we clearly need to go on a postseason defense.  I am to have trays for my teeth made and then I am to soak my teeth in this special fluoride gel for a half hour each evening.  The gel is not  expensive and the trays can be used for other things, such as whitening.  I feel that I should give trying to save my teeth the old college try.  But, if come next February, I learn that I need a bunch of fillings, I am going to look at having my teeth extracted.



More ... discouraging news. My lung symptoms have been coming back as I have tapered down to the maintenance dose of the steroids. It's been getting worse and worse, so I emailed the pulmonologist and described the symptoms and what I was noticing. I have a new one, too. I get short of breath. I also get breathless (as in I go to breathe and it feels like there is no air in the room). And now I get this pressure in my chest, as if something is sitting on me.

She called today to let me know she's going back up on the steroids. I thought she would move up the testing, but I know ... absolutely know ... I'm going backwards again.

This thing with my lungs truly frightens me.


I've been stalking my insurance website to see what the hospital claim is for the spinal tap. It posted today. This crap day. It is ever so much more than I thought. $300. Three times more than anything else I've done in radiology. Way more than even the endoscopy.


That day just kept getting worse and worse for me.

I wanted some lavender aroma therapy, so Amos obliged, along with a couple of hours of swaddled snuggling. The last time he was in the tub was before the Kulps came to visit, more than a month ago. Post bath, my beloved Fluffernutter is the softest bit of creation on the planet!

Writhing. Something fierce.


In the span of less than 24 hours, I have gone from a tickle in my throat to coughing up my lungs. I just left the doctors office, and I’m heading to the pharmacy to pick up some antibiotics. And I am really, really, really worried that this could affect my other lung issue.

The thing about interstitial lung disease is if it is from Sjogren’s syndrome then there is no cure and the damage will just continue to get worse. The pulmonologist is holding off making any sort of definitive diagnosis, because we are still at the beginning of treating the patches of groundglass opacities in both lower lobes of my lungs.

The thing about interstitial lung disease from Sjogren’s is that it means a life expectancy of about five years from diagnosis. So Amos and I are crossing our fingers that it is idiopathic interstitial lung disease or something mimicking interstitial lung disease.

However, I don’t know how some lung infection could affect my current crappy lung function.

I am rather frightened at the moment.


Since I received treat money in the mail yesterday, I decided to self-medicate with Blue Bell. I chose Sea Salt Caramel as the next new flavor to try.



In my opinion, pharmacies use entirely too many staples!


Dining out in my haven!


Because it's been a crap two days, I decided that I needed to have TWO helpings of Blue Bell. I tried the second flavor: Key Lime Mango Tart. I have to say, I preferred the latter to the Sea Salt Caramel. However, I will not be hard pressed to finish off both half gallons.


My sister, after hearing me cough, advised me to make a hot toddy. I Googled recipes. Many had water or tea, but that didn't seem right. So, I kept to the three main ingredients: 2 tbsp whiskey, 1 tbsp honey, and 2 tsp lemon. I used my Tennessee Honey Whiskey.

Oh my!

I think I could drink a dozen of them.


I took a nap a bit ago. Now, I've decided my evening therapy should be another showing of "Bright." I really like that movie.


Jacoby: Everywhere I go, why do orcs always got to be the bad guy?
Rodriquez: Don't look at me, man. Mexicans still get shit for the f____ Alamo.

I just love all the little throwaway lines in this movie, especially the historical ones. Being a Texan, of course you got to "Remember the Alamo"! In my world, you didn't leave elementary school without carving an Alamo out of a bar of Ivory soap. Ah, the pleasures of childhood!

So that brings us to today.  I shall not post the blow-by-blow, except to say that it was remarkably difficult to do anything given that I have such a terrible cough and that I slept very little last night.  I am much better sitting and standing that I am lying down.  

I am annoyed at the cost of the antibiotics.  Two years ago, the exact same prescription was $2, a Tier 1 medication.  Now, it is a Tier 3!  So, I was charged $34.56.

I already am freaking out over all the medical expenses in September.  Then I have the $300 that I will owe for the spinal tap.  And now this extra expense at the end of the month when I was hoping to have a bit of money to sweep back to the medical savings account.

I will note, however, from a positive perspective, that Amos has been particularly understanding of my wretched state.  He's allowed me to languish on the sofa as much as I need and to put off getting out of bed this morning three times.  Of course, he is quite skilled at holding his bodily needs in check when he deems it necessary.  Still, I appreciate the sacrifice on his part.

May tonight bring less coughing and more sleep!

Friday, August 17, 2018

Counting the cost...

Of course I have to be that small percentage that gets the CSF headache (low pressure headache or spinal headache).  I emailed my GP yesterday and called the neurologist's office today.  The treatment is a blood patch, but I cannot have one scheduled.  I'm supposed to show up an an ER and ask for one.

Yeah, right.  Like that's going to turn out in my favor.  Plus, it is expensive.

The old school treatment is high doses of caffeine, fluid loading, bed rest.  I have not been able to crawl into bed and stay there for the duration, because I still have my dear friend here.

I should have called by Wednesday.
I should have rested more.

It rather stinks to have to endure the spinal tap and then the agony of the CSF headache.  Every time I cough or bend over with my head tucked down, I get these get these stabbing pains that are worse than the pain of a migraine.   I could could pretty regularly because Sjögren's has my throat so dry of late, but I am trying not to do so, for I think I shall about die whenever I do.

After hanging up with the nurse, I went to see if the cramps medicine that I still have on hand was expired or not, since I knew it had caffeine in it.  It has not.  60mg.  I took that and drank a Dr Pepper.  Since the pain eases whilst lying down, I am not taking it at night, but I will as soon as I get up in the morning.  I think ... I think that there has been a bit of an easing in the pain when I cough.  The neck pain is much better.  However, the ringing in my ear is getting louder.

I am weary of being ill and I've done my darnedest, whilst Becky is here, to walk and talk and move and eat and play as if I am not ... at least not that much.

I have neglected the drops in my eyes and this evening, both eyes suddenly turned into the Sahara desert.  It was the weirdest thing. I was putting drops and gel by the gallons and I did a heat treatment.  Finally, my the dry, scratchy agony in my eyes eased.  I think it might have been the world's briefest flare.  That or another stab at me by my foe.

The only good is that I did not become grumpy with Becky.  I was scared, but I think I did a great job of stuffing that fear far down inside and just doing a bit of light worrying out loud.  I sure do not want to lose my vision.

And I am terrified that, since the duloxetine appears to be muting just a bit the constant shocking in my hands, I will have to give it up because of the dryness it causes.  I really, really, really want to make this medication work for me.

One finally note when it comes to medicine:  I just don't know if I will ever become accustomed to having saliva again.  The pilocarpine works for about four hours, so I have a two hour gap of effectiveness in between doses.  However, I just cannot afford more pills.  Once I take one, usually within 30 minutes or so, I have this rush of saliva.  It is so very weird and yet oddly wonderful and comforting.  One can hope that mostly covered is not too far off from needing cover.

I'm listening to the trains running through town on their way to somewhere grand.  I, too, wish to elsewhere. Where am I?   Where am I going? 

Where am I?
Where am I going?

Thursday, August 16, 2018

Not wanting to be...

I got so upset tonight that my pacemaker didn't seem to kick off.  Well, it did.  But it would wind down and then spin back up.  What ultimately helped was putting on a flowy skirt.  I kid you not.  We came home from dinner and I dug through my closet until I chose a flowy skirt and a comfortable tank to go with my most favorite lightweight hoodie.

I wish that I were not me.
That I were a different person.

Becky and I went to a movie.  It was the first time that I have been in a movie theatre since 2010 because of money.  We get there, and I immediately feel the cloying heat of a room without air-conditioning running.  We were the only two folk in the theatre, and I honestly believe AMC was trying to save money.  Becky went and asked for the air-conditioning to be turned up whilst I stripped off my jacket and started using the hand fan in my purse.  I was rather miserable.  Eventually, some cool air entered the room and I could remain as long as I did not move around too much.

You would think that I ...

Dang it.  My pacemaker is going off again just trying to write.

I am not sure what I was going to write, but I was rather annoyed that the movie-going experience was marred in that way.  However, Becky was gracious about the whole matter, steadfastly ignoring my sticky, sweaty grumblings.

In between movie and dinner out, we ran three prescription errands, two for me and one for Amos.  At the first pharmacy, my prescription was not run correctly, so I worked on getting it corrected, given there was a price difference of $8.60.  It made me realize that the other two times the prescription for prednisone was not the $2 Tier One cost was that it was run through GoodRx by mistake.  Since I did not catch it, as I did today, there is no way of getting the money back.

I tried to be ... not me ... but I was a bit grumpy.  So, I worked on reigning that in and trying to finish out the exchange pleasantly and thankfully.

The second pharmacy stop included a grocery run of getting an avocado for chilorio.  Becky bought the avocado and walked over to my vehicle before I finished.

The third "pharmacy" stop was actually at the vet's office, since I knew that we'd be fairly close to it when heading to the restaurant.  I had called to discover how often to follow up on the foot treatment once I finished it.  The instructions simply said "as needed."  The medication is from a year ago, and I just started treating his feet again.  The shampoo means wetting Amos' paws, lathering them up, and then letting him stand in soapy paws for 10 minutes.

The "sample" (translate that an entire bottle) is of a new version that is a mousse.  All I have to do is work it through his hair and keeping him from  messing about with his paws until they are dry.  MUCH easier than the original method.

His vet tech offered the sample bottle to see if the mousse might be easier for me to use, if I am going to treat his feet on an on-going basis.  Free is a good thing.  So is an easier method.

You see, Amos has been licking his paws (and now chewing on his nails) for 18 months.  Most of the time, we've been treating it like an allergy, but it was not.  I finally tried the fungal shampoo again and discovered that was the problem.  I must have not given it a good go the first time I tried it a year ago.

The answer:  Start with once a week and work up to once every two weeks.  Now that I can do.

After our third prescription pick-up, we headed to Olive Garden, where, for the second time in the second time of eating out with Becky out at a restaurant, I ended up sending my meal back.  SIGH.

The first time, when her whole family was here, my pizza was raw dough.  It was a deep dish pizza with raw dough.  It was disgusting.  But I felt as if I caused such a ruckus that the family was embarrassed.  Even now, when I think about that meal, I struggle with believing that I ruined the entire meal.

This second time, well, the dish was missing two key ingredients: sun-dried tomatoes and balsamic glaze.  And I was not about to pay for and eat a dish that was left undone.  Since we were splitting the dish, this time round it was even more embarrassing to me.

I want to be the person who doesn't care what her meal is like.  I want to be the person cares more about the other person(s) at the table than her meal.  But I am not.  Well, I do care about the other person, but I wanted the dish to be ... right.

The server was going to take it away to add those two bits of the dish, but they should have already been incorporated into it, not just plopped on top.  So, I asked for the dish to be re-made.  And then I just started thinking about how much I wish that I could be re-made and now much remaking  I would need.

I grew more and more upset and my pacemaker could barely keep up.

It doesn't help that my headache is worse again today and that coughing makes it excruciating.  Worse even than a migraine.  It throbs for a while before calming back down.  Each time, I swear I won't let it happen again.  Only then I feel that awful pain again.  And I immediate regret every moment I've spent not lying down.

I emailed my GP, but I believe that there is nothing to be done now, except for strict bed-rest, as least as a first line of treatment;  But we are far away from the final solution, which is to do some sort of blood patch over the hole in my spine from the needle used in the lumbar puncture.  Of course, I am only assuming the CSF headache is the problem, since I have not yet been diagnosed.  I am just getting worse and worse and mostly ignoring it so I can enjoy my visit with Becky.  It is my goal, however, to try and lie on my back much of tomorrow.

In any case, it is also my goal to stop being upset with myself.  I haven't even really scratched  the surface trying to explain.  All I can really say is that I am deeply embarrassed that I sought recourse for my dish at two separate meals out with Becky.  I am distraught over who I am on so very many different levels and all that came spilling out tonight.  I am distressed over the pain in my head.  I am annoyed at my pacemaker.  And I am worried that I am ruining Becky's visit with who I am.


Wednesday, August 15, 2018

One very last time...

So, the CSF headache, also known as a low pressure headache, has the defining characteristic as being positional.  This means that the headache happens when sitting or standing, but is relieved by lying down.  I am still battling a headache, but it is really only relieved by standing up.  Lying down does not bring respite.  Sitting is the worst.  SIGH.

One of the things that I asked Becky to do whilst she is here is to go to church with me.  I do not like to talk about it, but I have not been in a very, very, very long time.  Getting where I was going was so hard and having the pastors come visit was ... well, one wanted to come and the other was not comfortable.  The one who wanted to come left to go to another church.  And, after a while, I thought that there was nothing connecting me to the church and the pastor really didn't want to come and then....

Then there is me.

I have better words now, for what I fear, but I no longer have a pastor to whom to speak them.  And, to be honest, I am not sure I want to do that.  I am not sure I ever want to try again.  After all, whilst I have not spoken them to God, I know that He knows and understands that I better know and understand what it is that I fear.  I believe that His knowing is enough, that I do not actually need to speak them aloud.

I'm not totally sure about that.

It is like with having my gown untied.  It wasn't until just this weekend that I finally was able to say what it is that triggers me.  I actually am  looking forward to therapy just so that I can tell my therapist.  We tried to talk about it when I last saw her, but I didn't have the words then.  So, it was a bit of a flop.  Now, I have the words.  Untying a hospital gown brings me back to the head space and place of having someone remove my clothing.  I don't know how to unpack everything behind and beneath those words, beneath that connection, but she will.

Not, mind you, that I am looking forward to working through that.

When I tried to talk about my spiritual fear, I kept having folk focus on "faith."  And I was oft accused of trying to measure my faith by my own faith instead of by that of Jesus', since His is what saves me.  But that isn't the crux of my concern.  It isn't faith.  It is belief.  What does it mean when Jesus says, "Believe..."?  What is it that I believe?

In therapy, we've talked a wee little bit about the fear.  In part, because she assumes that I have this great comfort in my faith.  And I have struggled to explain to her why that is not true.  And yet she's does a fairly good job of following me when I wax poetically about the Psalter or talk about the Book of Concord.  She has no problem with the dissonance between my doubts and fears and my tendency to spend eons talking about the Psalter and the Living Word and the power and efficacy of the Word of God.

Anyway, I started looking for a church where I might try one very last time to find a home.  My thought was that I could maybe go one Sunday a month.  Maybe.  And there I discovered a church very near to my house that has a regular evening service!  I thought the only other evening options in Fort Wayne were contemporary Saturday night services.  Alas, no!  This church has a service loosely based on Diving Service Setting III.

It was a smaller church with a smaller number of folk attending.  Becky and I stuck out like a sore thumb, but I enjoyed the service anyway.  At the end, there was a time for announcements, and the pastor opened it up to folk in the pews.  Sure enough, a woman had two thoughts to share and stood up right in the pews to do so.  I thought, that's just the way it would have been done in a non-denominational church when I was back in Texas and back in the 80s!  I felt right at home.

I definitely plan to go back next Wednesday and so on, to continue to search for a church home.  Plan being the operative word there.

The part of the church visit I wasn't expecting was the pastor telling me that it was not as important that I have a membership at an LCMS church, but what I believe about the true body and blood of Jesus Christ.  So, I was served the Lord's Supper in the pew.

It's been so long.

After the pastor finished his sermon, my pacemaker kicked in as I thought about finally having the Lord's Supper again.  I think the report from my pacemaker for earlier this evening would make for rather fine reading.

When thinking about going tonight, Becky and I listened to one of the sermons on the church's website.  I liked it so much that I listened to it a second time.  It could just be that it was because the sermon was about peace, but I felt like it was a Word that was just for me.

The thing about this afternoon is that, as it wore on, I felt worse and worse and worse.  I started to think that the devil just didn't want me to go.  And I felt that a foolish thought.  Still, this headache that I cannot shake is getting worse.

It both concerns me and it doesn't.  After all, there is too much hurting in my body to be truly worried about any one thing.  So, mostly, I focus on what scares me in the moment.  And, today, what scared me more than the ills of my body was the thought of actually going to church ... trying to go ... once again.

One good point about the church:  I can park right by the front door and be in the sanctuary lickety-split.  From an energy stand point, it is the easiest church journey, door-to-door, since I became ill.  That has to count for something, right?

Anyway, I really do feel a tad foolish for trying, one last time, to be a part of a church body.  I do not know if this is a place to do that.  I do not know if I can even ... follow through.  I mean, when Becky is here, the power of her presence excites me so much that I can do more than I would alone.  I am, of course, exhausting myself, but I simply do not care.

Today, I just couldn't keep going and napped for a short period of time.  I wasn't sure that I actually slept, but Becky confirmed that I snored, so there was that.  We were playing games, having a grand old time, and I just had to lay my cards down so that I could lay my head down.

Tomorrow, our plan is to see a movie and go out to eat.  To be normal at real places in real clothing.  Of course, keeping up with the Jones in the eating department might have my new outfit rather tight.  I know I've already gained weight since she's been here.  Today, I ate a bit less.  Tomorrow, I hope to eat a bit more normal.

And, of course, I need to stop eating freely from the stash of brown sugar oatmeal cookies that I made for Becky's visit.  Who am I kidding?  That I made for me to eat during her visit, so I would feel less guilty since I could pretend, at least, that I made the cookies for her.  SIGH.

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.