Monday, September 17, 2018

Day One


Day One of my impossibly long week was survived.  Thankfully.

I know that Luther teaches that our foe prowls around like a lion, looking for opportunities to attack, but it is hard to think of myself as someone worth attacking.  I mean, what threat am I to him?  And, yet, sometimes I wonder at the obstacles that oft come my way.

For example, last night, around 1:00 AM, I started coughing from a dry, burning throat.  I coughed the rest of the night and got very, very little sleep.  This on a day when I had to get up at 7:45 AM in order to get to the training session that I have been trying to get to since June.  Somehow, almost magically, after I dragged myself out of bed, that cough and dry, burning throat went away.

Another example is my trying to go to church again.  I have managed to get there five weeks in a row now, which is a bit mind-boggling.  Although three of those weeks, I became terribly ill in the few hours before needing to leave.  So many symptoms have flared on Wednesday late afternoon that it gives me pause.

Where was I trying to go this morning?  Hospice.  Back in the dark ages, I was a hospice volunteer.  I tried volunteering with Make-a-Wish foundation, but my first partner kept breaking the rules of safety and, when I reported the problem, she sent rather ugly texts to me.  The resolution of the matter was to keep that wish granter and just find me another partner.  The whole situation was unsettling, and I realized how rather unprofessional the entire set-up is.  I believe it is unsafe, too, without a local office or staff to oversee what is actually taking place.

Rather disappointed, I was about to give up on the idea of my volunteering, but I pulled myself up by my boot straps enough to apply to a hospice program and ask about the training.  My mother was here for the first training.  Becky was here for the second training.  And so this was my third attempt. Maybe.  There might have been something I missed in July, too, but I am not sure.  The point is, trying to get to the training session has been fraught with reasons why I really couldn't go.

I wanted to just stay in bed this morning.  I mean, I feel wretched and I still have the bulk of my long week to go.  However, I decided that if I could get up, I would.  I could, so I did.  And I completed the first segment.

Next up is a 9-hour webinar that I need to complete.  Then I have a physical.  [Do you think that I will pass the drug test?]  After that is a TB test.  I also have to track down documentation for my flu shot.  I believe, too, my references need to send back their responses about me.  Once all of those boxes are checked, I have another session and individual interview.  Then, hopefully, I can be on the register as a volunteer.

I came home and napped, but not as much as I needed.  I am not sure why I could not sleep more.  Then, I walked on the treadmill, fed Amos and myself, and languished on the sofas a bit trying to work up the energy to shower.  I was nearly out again when Amos went nuts over a thump in the house (at 98-years-old, my house makes noise from time to time).  So, instead of sleeping a second time, I showered and then languished the rest of the evening.

By languish I mean that I am too weary to stream or read and oft just sit thinking ... or trying not to think.  Mostly.

I have been doing puzzles lately on my rather old iPad mini.  I started challenging myself by not looking at the picture of the puzzle after I start.  Then, I stopped organizing the final puzzle pieces by shape and have concentrated on finding what I need by looking at them all mixed up.  So, mostly, I  start with the edges and then look for colors that I can combine until I get enough started to work out the puzzle.

As children, my siblings and I did puzzles with our father when we visited on his weekends.  Doing puzzles was probably the only real true family activity we ever did.  I learned that my sister has carried the tradition on with her boys.  In part, I believe she does because my autistic nephew loves them.  She buys them at the dollar store and then donates them when he is done with them.

After watching him work on a puzzle one day during a video call, I resolved to buy some puzzles.  Only I kept forgetting whenever I drove by a dollar store.  And forgetting.  And forgetting.  Finally, I went looking for an app and found one that I thought was a good option.

I wish I could remember the four of us sitting around the coffee table, working on a puzzle.  I wish I could remember the things that my sister tells me about growing up.  I wish I lived close to her so that I could do puzzles with her and my nephews.

The good news about tomorrow is that my appointment is not until late afternoon.  The bad news about Thursday is that appointment is at 7:45 AM!!  I totally dropped the ball on that one because I was so overwhelmed at the news that my lung function had not improved.  It is out at the hospital complex, so I have to leave at 7:15, which means I need to get up at 6:30.  Come Thursday about noon, I shall be knackered beyond words.

Neurology is the morrow.  I am dreading that appointment and wish I were not.  SIGH.

Sunday, September 16, 2018

Catching up again...


Oh, my!  I didn't even hit publish on last Tuesday's post and then have just been ... existing since then.

The rheumatology visit was overwhelming.  Everything is these days.  SIGH.  It was overwhelming because she wants to switch me to DMARDs (disease-modifying drugs), because my pain response to the prednisone I've been on for my lungs has shown that my joint pain is inflammatory and not degenerative in nature.  And, according to her, I cannot just remain on prednisone.

Why not?

The problem is that she needs to know what the neurologist is going to do and what medication the pulmonologist is going to transition me to after the prednisone, assuming she doesn't just keep me on it.  Really, I should be seeing the pulmonologist first and the neurologist after, but that is not the way my appointments are this week.

I left her office and sat in the parking lot awash in my tearless weeping.  I felt (and still feel) so very alone and most desperately wish that I had someone with whom to walk this journey.  A husband.  A roommate.  Someone in my family.  Someone who would take the pamphlets on DMARDs that I came come with out of my hand and read them with me.  Someone to go over the prods and cons of each drug and help me price-compare them.  Instead, I am the only one to try and figure out if I want to try Methotrexate, Leflunomide, Hydroxychloroquine, or Sulfasalazine first.  Of course, all that research and deciding could be made moot by the lung treatment is chosen.

I want someone with whom I could go to all of these doctor appointments.  Someone to keep me company.  Someone to listen to all the information pouring in my ears.  Someone to remember what symptoms and updates I need to share with the specialist.  Someone to help me review treatment options.

But it is just me.
SIGH.

Then, Amos had another massive allergic reaction to a flea bite the way that he did in the fall of 2016.  Then, I switched to the much more expensive but comprehensive heart worm/flea medication.  After a year, I just couldn't keep up with the cost of the drug, so I went to the one that is a third of the cost.  Here we are, nine months into that change, and somehow Amos got another flea bite.  Amos who is as much of a hermit as I.

Off to the vet to learn that, he simply cannot be on the cheap medication.  After all, the visit, treatment, and flea medication to get us to the first frost wiped out most of the savings of the cheaper medication.  And Amos has been absolutely, utterly miserable.  

As much as I have been counting weighing every penny I spend, trying to make the most economical choices (except when it come to having Blue Bell in my life), I opted for the immediate treatment ($13 more) than the pills that he would have to take over two weeks.  This way, in just a few hours, his misery would start to abate.

I came home and crunched numbers.  That's what I do ALL THE BLOODY TIME now.  I get hit with another financial sucker punch and, after I pick myself up off the floor, I try to figure out a way to make it happen.  The problem this time is that my pie simply cannot be slivered any further.  I know what I need to do, but I do not know how to do it.

I did find a cheaper option for paying for the Trifexis that my beloved Fluffernutter needs: Chewy.com.  I know that there is all this admonition against mail order drugs on both human and animal fronts, but I need to do this.  If I order the pills online, I will save $95 over the year.  I cannot pass up such savings.  I simply do not have the money.

I was talking about the option with my sister, when I found out that she also uses Trifexis on both of her puppy dogs.  She, too, tried to use the cheaper option, but the heat and fleas in Dallas are too great.  So, I set up an account for her, entered her dogs' information, entered her vet information, and set up an auto-shipment order.  [You get a regular discount with auto-ship and a one-time discount with your first order.]  In just two days, the prescription had been verified by Chewy.com and the pills!  At least that was some good news.  My sister is saving over $90 on her first order and well over $300 on the year.  More good news.

And then there has been a whole lot more exhaustion.

I did learn, Sunday, that I have royally messed up my meds for quite a while.  Both my thyroid medication and one of my blood pressure medications are small, round, pink pills.  It turns out that I mistakenly poured blood pressure medication into my thyroid bottle when I was filling it some time ago.  So, I've had a third dose of that medication and none of the thyroid medication.  I am hoping that that was the reason for the utter inability to stay awake.  And some of the pre-syncope.  And a whole lot of the wretchedness that I have been feeling.

I believe that it took me until this weekend to finish off all the extra medication in my body and am hoping that things will turn better soon.  After all, these past two days, I have only had a single nap instead of three.  That's rather remarkable.  However, tonight has been a most terrible instance of constant pre-syncope every darn time I try to get up off the sofa.  I'm just a wreck.    Still, I'm hoping things might be better ... eventually ... with having thyroid pills in the thyroid bottle.

This week is going to be brutal.

I have training on Monday, if I can make it.  I have the neurologist on Tuesday.  I have the dentist on Wednesday.  And I have the pulmonologist (and the next round of pulmonary function testing) on Thursday.  I shall be half dead by Friday, with all that extra dressing and driving and walking and thinking (and hoping and being overwhelmed).  Plus, I have managed to get to the church five weeks in a row.  I would still like to keep that trend up, if at all possible.  Like I said, this week will be brutal.

SIGH.

Tuesday, September 11, 2018

Ravaging...


With all the silence, you would think that I would be grateful for all the going-out I have to do over this medical month, but I am not.  Getting up, getting dressed, and driving myself to an appointment makes me all ready for another nap!  Only I am stuck with needing to get through my appointment and then drive myself back home.  So ... extra exhaustion.

Today, I went to the dentist to get the tray molds done that will be the last-ditch, crossing-all-my-fingers-and-toes measure to try and keep from having to doing fillings on the SIX teeth that Sjögren's has targeted next.

Two of my doctors are not all that thrilled that I will be doing intensive fluoride treatments daily, but both are in agreement that it is a good decision to try and ... what ... reverse??? ... the damage starting on those teeth.  Five and a half months of putting fluoride gel in the trays and sticking them on my teeth for a half hour each evening and then my annual exam to see if I could, for once, have good news at the dentist.

Funny that.  I'm the good teeth person in my family.  The one who's had nary a dental worry her entire life until this BLASTED DISEASE started ravaging my teeth.  My family are still shocked at the news of all these fillings.  IF the fluoride doesn't work, that will be 10 fillings in a year.  TEN FILLINGS IN A YEAR!!!!!!!!!!

SIGH.

Tomorrow, I have my appointment with the rheumatologist, where I hope to address a whole long list of questions from my head and that of my GP.  Life has changed greatly for me since I saw her last.

Monday, September 10, 2018

Snoozing life away...


My doctor did an assessment for narcolepsy last month.  I just don't think that I have that.  And neither does she.  This month, we discussed medication, provigil being the one she thought would be okay to add to my millions of pills I am taking.  However, not being covered, it would be $50 a month.  I just do not have that.  I am wondering what other stimulants that I could try.  Only I have been too tired to try to Google that answer or even message the integrative medicine specialist (which would be far better than Dr. Google).

Exhaustion is par for the course for both dysautonomia and Sjögren's Syndrome.  Coupled together, what hope have I?  But, oh my, I am growing weary of my days.

Two more have passed where I woke, took Amos outside, walked on the treadmill, showered, and slept.  Then I got up, fed Amos, fed myself, and slept.  A little puttering and then back to bed.

To me, this is not much of a life.

And, in case you were wondering, hypersomnia is a poor companion to loneliness.  Sleeping so much makes me feel even more isolated.  I am so lonely it hurts.

I realized tonight, as I sat down to write this before bed, that the entire day has passed without a sound in the house save for Amos' periodic protestations of folk daring to walk in front of our house.  No television.  No music.  No phone calls.  Just a woman and her dog, snoozing life away.

The silence is truly deafening.

Saturday, September 08, 2018

Medical news...


I had good news that was also bad news at the cardiologist on Tuesday.  You see, I've had a significant increase in palpitations over the past few months.  I have the heart pounding ones and what I call flip-flops ... sort of like that feeling when your stomach drops out whilst swinging really high.

When they happen, they consume your senses and everything else fades away.  It is difficult to concentrate on anything and it is practically impossible to sleep.  Yes, I have had many a night now where I could not sleep because of the palpitations.

So, the good news is that they are not from my heart rhythms.  Instead, they are from dysautonomia.  My heart is having to work overly hard and I am feeling that.  Yes, being that they are from dysautonomia, there is nothing to be done about them.

There is ever so much in my life that I simply must endure.  The palpitations.  The fainting and near-fainting.  The violent waves of nausea.  The pain.  The exhaustion.  The sickness with bowl movements.  The brain fog.  The blood sugar crashes.  I could go on and on, but even typing those things brings on the despair that is my constant companion.  Despair and fear.

The pre-syncope (near-fainting), well, he believes it is because of the amlodepine that I am taking.  DON'T MESS WITH MY AMLODIPINE!  I practically shouted at him.  Well, not really.  I only repeated the word "No" every time he started trying to suggest that I reduce that medication.

Okay.  So, blood pressure medication.  You have beta blockers and calcium channel blockers.  Normally, or at least until recently, you were not prescribed both classes.  But, back in February, the Raynaud's Syndrome started affecting my fingers.  I went to my GP and begged her to try the drug, the calcium channel blocker she had mentioned: amlodipine.  It took me a long, long time to learn to say that drug, but it now rolls off my tongue with much affection.  It is beloved.

Rare.  It is so very rare to actually have something ... fixed ... when you live with chronic illness.  But amlodipine did that for me.  Yes, my blood pressure dropped even lower, but I acclimated to it and my hands when from blue and numb and hardly useable to warm and just peachy king.  DON'T MESS WITH THAT!

We went back and forth about lowering my amlodipine before he suggested that we try lowering the beta blocker: metoprolol.  He said that we could cut it in half.  IMMEDIATELY, I became deflated, thinking about how I had just received another three-month supply and I was exhausted at the thought of cutting all of those pills.  I said as much.  He gently reminded me that I take it twice a day.  He was talking about taking it once a day.  Oh.  Stupid Myrtle.  "Yes, I can try that."

I am not sure if the change has helped or not.  Yes, I have had few pre-syncope episodes.  However, the ones I have are more severe.  SIGH.

So, that was Tuesday's appointment.

Well, three was also the news that I could possibly FINALLY be approved for an MRI by the radiologist.  In fact, I learned that, it appears, a whole lot of miscommunication meant that I could have not have had the spinal tap.  SIGH.  In a nutshell, the cardiologist said that all my neurologist needs to do is call the radiologist and say that she needs the MRI.  He said he would call her and let her know.

Of course, things don't work out that easily for me, eh?

Next week, I see the rheumatologist, so Wednesday I did the blood work for that visit.  Sadly, it showed that I have taken a HUGE step back with my kidneys.  All that I have gained by cutting back on the Celebrex and drinking more water and such things are gone.  My numbers are the worst they've been.  And that means that I would not be cleared for an MRI with contrast, which is what I need.

I was rather worried about my appointment with my GP.  I new the end result would be to give up the Celebrex completely right now.  At least I have the steroids to help with the pain.  SIGH.

I tried to talk with her about the exhaustion.  I've been trying to do that for several months now.  She is aware of it, but I still haven't really communicated to her just how bad it is gotten.  I did ask about medication.  The option she came up with is $50 a month.  I just don't have that.  At all.

I feel as if my whole life has become about sleep.  I mean, I can only be up for a few hours before needing to sleep again.  With visitors, the adrenaline of having company can keep me going.  Then, they leave ... and I crash.  Hard.

Today, I awoke, took Amos outside, walked on the treadmill, showered, visited with my realtor, and crashed for two hours.  So exhausted after doing so little.  But that was not so little to me.

After my GP appointment, I called Becky because the news about my kidneys is just so very devastating to me.  And I was deeply despairing over not being able to make myself clear about just how bad the exhaustion has become ... though I did not bring that up with Becky.  It is a silent grief of sorts.

And I'm still worried about my lungs.

I had planned the monthly shopping fairly carefully.  I picked a few things at Target that were on sale (and one that was not ... and not on my list).   I had a $10 credit at Meijer to use.  Then, at Walmart, I had two prescriptions ready and my main grocery order for pick up.  Between the two, I also picked up some deli meat.  I had my spending down to the penny, though the pennies changed on the fly.  I had planned on using the money for the week on a meal out, but ended up switching it to some more groceries, including the deli meat.  I thought I had the energy down, too, but I didn't.  By the time I got home, my head was buzzing.  Literally buzzing.

I was so very, very tired.
I still am.
Always now.

Thursday, September 06, 2018

I wonder...


Yesterday, I tried to squeeze a—for me—prodigious amount of activity.  So, today, I have done nothing save for walk on the treadmill.

You see, sadly, my therapist is going on vacation, which means I will not see her for a month.  She freed up an extra day in her schedule so that I could see her yesterday.  The appointment was not my usual time, so I had to forgo my new habit of getting up and torturing myself on the treadmill right way.

I got up, got dressed, went to therapy, came home, and fell asleep.  I am so darned exhausted ALL OF THE BLOODY TIME!

When I awoke, I sat staring at the clock, trying to figure out if I could squeeze in all that I wanted to do before church, because I am trying to fight the PTSD and keep going.

First, I changed into my exercise clothes.
Then, I walked on the treadmill.
Then, I cooled down.
Then, I cooked dinner and fed Amos.
Then, I took a shower.
Then, I changed into church clothes.
Then, I raced over to get my blood work done.
Then, I stopped for gas.
Then, I made it to the church on time!

I really hate missing the forgiveness at the beginning of the liturgy.

All of that constant movement for several hours on end was too much for me.  Normally, I would have had a nap in there, at least something between dinner and church.  However, there was no time!

I stopped for gas because there was a gas alert for Fort Wayne, which is generally in the 30 cents range.  With all of the medical appointments that I have this month, already need gas again.  Or rather I would be needed gas after my next two appointments and I wanted the $2.69 gas.  Have I mentioned that there is a cheap gas station just up the street from the church I am attending?

My blood work was just posted.  The rheumatology blood work is good, but my kidney blood work is the worst it's ever been.  I am not looking forward to seeing the GP tomorrow.  I know it is taking both the Celebrex and the steroids.  I already went down on the Celebrex 11 days ago, but I stopped it yesterday.  I will not know if I can bear that, if the steriods will be enough, until tomorrow or Saturday, since my body hangs on to drugs quite a bit.

I want to stay on the steroids, because I notice a difference in my breathing on them.  And this lung issue stuff has me rather frightened as far as long-term consequences.  Have I mentioned that I HATE Sjögren's Syndrome?

Amos is all better.  I even finally pulled up all the coverings that I had put down on my bedroom floor.  All in all, I am glad that I was forced to finally shampoo the carpet, but I am not happy that I triggered such a terrible stomach upset in my dog.

I suppose, though, I should say that Amos is almost all better.  He still seems to be itching some.  Not a lot.  So, I am waiting to see if it is just residual itching that will continue to get better.  His hotspot is healing really nicely.  That is a huge relief.

Because I couldn't find the E Collar from two years ago, after unsuccessfully trying to behavior modify him from licking that spot, I fashioned one from material around the house.  Amos didn't like the homemade E Collar any more than he did the commercial one.  But two days of wearing it was enough time to get the healing started on the hot spot so that he would leave it alone.

Amos also denuded the bottom side of his tail (stump).  I am contemplating going ahead and cutting off all the rest of his curls (I keep them long so it looks like he has a tail) so that they can all grow out together.  I just really detest stumped tails and wish that I had known the seller was going to do that as a part of his "service."  SIGH.

I am so weary that, again, I have not read or watched anything.  Amos and I just sort of sit and think or not even think because thinking is hard work.

I wonder if this crazy exhaustion is ever going to end.
I wonder if this is how the rest of my life is going to be defined.
I wonder if Amos think's I've turned into a dog with all the napping that I do now.

Monday, September 03, 2018

Bleh...


For eight days now, I've had near constant nausea.  At first, I paid little attention to it because I was just turning the corner from the upper respiratory infection.  I was so happy the antibiotics were working.  Then, I thought the nausea was from the antibiotics.  Finally, I remembered that I increased the new pain medication on Monday and that was the cause of the nausea.  I know it is because it is pretty much impervious to my beloved Zofran.  And so I am stuck with it until the side effect wears off ... hopefully.

So, I've been pretty bleh.  Between the nausea and the abject exhaustion, I have done little else but sleep and languish.  I haven't really read or watched anything.  I've barely existed.

And then Amos somehow got some fleas despite his expensive medication.  He is highly allergic to them and got pretty punk himself.  Forgetting what benedryl does to him, I gave him benedryl and slathered his hotspot that he created with cortisone.  The first two days were fine.  And then.  The vomiting started.

Amos vomited ALL OVER MY BEDROOM.  On the bed.  One the trunk.  On the floor.  It wasn't until he had pretty much emptied himself out that I Googled if dogs can have Zofran.  They can.  I gave him some.  He stopped vomiting.

I had procrastinated cleaning the carpet upstairs all summer long, so you could say that this was a blessing in disguise.  However, I am SO BLOODY EXHAUSTED.  Still, I cleaned the carpet today.  Trembling and sweating and barely making it through the task.  And I put all the bedding in the wash.

Eight hours later, after successful water consumption, I fed Amos.  He was begging for food.  I thought all was good, but four hours after that, Amos vomited his dinner all over the living room.  The good news is that we were not upstairs yet.

I know that you are not supposed to give food for 24 hours if vomiting, but, my goodness, I am so weak willed when it comes to a pitiful Amos.  I sure learned my lesson though.

I am so nauseated and thirsty and exhausted.  I very much want to take my meds and go to bed early, especially since I still have to put the bedding back together.  However, I want to stay downstairs until I am sure that Amos is not going to vomit anymore.

Somehow, too, I need to remember to lay down towels all over the floor once we do go to bed.  I do not wake when Amos leaps off the bed to the floor.  I only wake once he starts retching.  So, trying to get to him to move him to the bathroom or somewhere without carpet is pretty much impossible.

Ah, crap.

Amos just vomited again.  He very kindly went to the front door to vomit on the cloth doormat.  He does sure like a soft landing for his vomit!  SIGH.

Poor puppy dog.

All I can think is that I somehow missed his pills last month.  Although I also cannot figure out how I would have fleas in the yard since no other dogs are in there.  And the yard is the only place where Amos could pick them up.  Well, there are stray cats that wander around.  Maybe one left some fleas on the front porch bench or in the back yard.  In any case, a flea bite is so hard on Amos.

It was nearly two years ago that we we through this.  I thought I could handle it at home.  But maybe not.  I'll need to call the vet on the morrow if he's not improving.  Of course, the morrow is my four-month appointment with the cardiologist.

ARGH.  I am so darn NAUSEATED!

I feel as if I should be better at handling nausea by now, but I am not.  Not really.  I mean, this is so very unbearable since nothing really stops it.  Eating helps a little bit, but it is hard to enjoy food when you are nauseated.  The nausea eventually went away when I started the medication, so I am hopeful this will go away again.  Maybe in another week or so.

Well, I've written through the hour needed until it was time to take my midnight meds.  However, with Amos' vomiting again, I am definitely staying downstairs for a while.  After all, I am determined not to ruin all that hard work of cleaning the carpet.

It is hard to read, to do anything being so nauseated, but maybe I can listen to some sermons for a while.  I am trying to listen to the sermons from this year at the new church I started attending so that I can get a better feel for the pastor and the teaching and maybe ... I don't know ... have a better chance of fitting in??

Look at me trying to be hopeful even as I feel so utterly bleh!
Is that progress????

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.

I SLEEP WHEN I CAN SLEEP.

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.

ARGH.

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.
Later.
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.


Tuesday
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.

SIGH.


Wednesday



...

"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.


Thursday
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.

I AM SO OVERWHELMED!

...

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.

I AM TOTALLY OVERWHELMED.


That day just kept getting worse and worse for me.


Yesterday
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.

I NEED A BREAK FROM MY BODY AND BAD NEWS!!!!

...

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.
~"Bright"

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!



Today
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.
Wholeheartedly.

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.

SIGH.

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...
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.

Maybe.
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.
Maybe.
Hopefully.

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.